POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: PittGurl on August 10, 2015, 02:39:34 pm
-
Please bear with me - this is long......I'm a 43 year old female. 2012 was the last HIV test I had which was negative – since then I haven’t had sex with anyone at all. I had been waiting for my husband that left me 3 years ago and hoping for a change in heart…..well my husband left the other woman and came back to me May 16th after 3 years apart. He then left again June 24th to go back to the other woman he had been with for over 2 years. We had unprotected sex.
After he left there was another encounter i had with a friend from July 2nd to July 19th unprotected sex. My body is very sensitive and when i haven't had sex for a long time i get UTI's pretty quickly. July 21st i had a very bad one, was put on Cipro. I had also been washing my 3 cars and had a horrible backache and just felt yuck. The Cipro took away the pain and burning. Yet, I was still feeling like my ovaries were going to burst so I went to the ER. They ran blood tests (no HIV – wasn’t even mentioned) and did a CAT scan that showed everything was normal; gave me some morphine in the ER. My white cells were down a little but ER sent me home to continue Cipro for UTI.
One day later I was feeling like my skin was sensitive to the touch, my head was hurting, and just feeling yuck. I don’t think I had a fever and have had NO rashes at all. Went to a different ER, then ran more blood work (no HIV – wasn’t even mentioned) They did a CAT scan with contrast to make sure my kidneys were functioning, intervaginal ultrasound – everything was fine. They did a monospot test and said I had Epstein Barr virus but not mono just the virus that causes it. Said there is nothing they can do for that – just rest, fluids and time. That I would be tired and achy for a while. Same place decided to run STD tests and treated me in the IV for gonorrhea without confirmation – just as a precautionary. Called 2 days later and Chlamydia had tested positive. Dr called in Doxycycline for 10 days – which I finished this past Friday. I don’t know if my reaction to that meds is HIV or just the meds, but it gave me very loose bowels, loss of appetite and nausea/tired. They did a spinal tap while there and confirmed viral meningitis. Again, no medication, rest and fluids and sent me home.
2 days later I followed up with my primary dr from the ER visits. He was sure I was dealing with the Viral Meningitis but I requested additional STD testing and HIV.
August 3rd - The dr called me in and said my worst fear ever Initial Blood test was positive for HIV, then they resent it out and it was indeterminate and are now sending it out again for confirmation.
I feel like a pile of bricks was just dropped on me – Im a single mom of 2 kids (17 and 11) and all they did was refer me to infectious disease and my appt is 10 days later!!!! The next day the Dept of Health called me – and I wasn’t warmed about that either and didn’t know what to say to her. Meanwhile, I don’t know what is going on! I feel so alone, so helpless, so sad, my anxiety is through the roof. Right now, physically – I don’t feel tired, or achy or anything. I have an occasional shooting pain on the left side of my head which hurts more if I put my head straight down. From what I read that is part of the Viral Meningitis. The internet scares the poop out of me. I started having an appetite again the day after I finished the Doxycycline and my bowels started getting back to normal. I’m sleeping fine and maybe I went through the seroconversion? Im so scared
Here are my test results because I don’t know what ANY of this means.
HIV 1,2 AB DIFFERENTIATION
Component Standard Range Your Value
HIV-1 AB DIFFERENTIATION Negative Indeterminate
Confirmatory HIV-1 antibody test is ordered.
HIV-2 AB DIFFERENTIATION Negative Negative
MANUAL DIFFERENTIAL
Component Standard Range Your Value
Segmented Neutrophils 37-75 % 49
Bands Present 0-10 % 1
Lymphocytes 14-48 % 36
Monocytes 0-12 % 5
Atypical Lymphocytes 0-1 % 9
nRBC 0-1 /100 1
RBC Morphology Normal Present
Anisocytosis Normal Slight
Poikilocytes Normal Slight
Ovalocytes Normal Slight
ANC Manual 2.0-8.0 10E3/UI 2.7
COMPREHENSIVE METABOLIC PANEL
Component Standard Range Your Value
Sodium 135-153 meq/L 137
POTASSIUM 3.5-5.3 meq/L 3.6
Chloride 98-109 meq/L 109
CO2 24.0-31.0 meq/L 22.5
Anion Gap 4-12 meq/L 6
Glucose 70-99 mg/dL 119
BUN 5-26 mg/dL 7
Creatinine 0.50-1.50 mg/dL 0.92
Calcium 8.5-10.5 mg/dL 8.7
Total Protein 5.9-7.9 g/dL 7.3
ALBUMIN 3.4-4.6 g/dL 3.4
Total Bilirubin 0.2-1.1 mg/dL 0.6
AST 9-33 IU/L 60
ALT 5-38 IU/L 114
Alk Phos 38-110 IU/L 62
eGFR (MDRD) 66.62
Chronic Kidney Disease: eGFR <60 mL/min/1.73 sq.m.
Renal Failure: eGFR <15 mL/min/1.73 sq.m.
Patient Fasting Status Non Fasting (<6 Hours)
MONONUCLEOSIS SCREEN
Component Standard Range Your Value
Mononucleosis Ab (Mono Spot) Negative Negative
CBC WITH AUTO DIFF
Component Standard Range Your Value
WBC 4.8-10.8 10E3/uL 4.6
RBC 4.00-5.40 10E6/uL 4.54
Hemoglobin 12.0-16.0 g/dL 12.8
Hematocrit 35.0-47.0 % 40.1
MCV 80.0-99.0 fL 88.3
MCH 27.0-34.0 pg 28.2
MCHC 31.0-37.0 g/dL 31.9
Platelets 130-400 10E3/uL 176
MPV 8.0-13.0 fL 12.1
RDW 11.0-16.0 % 15.8
Apparently i was just told there could be another test that wasn't put on the Patient Portal that i have to go pick up in person because of privacy issues. I wish they would tell you these things!!!! My nerves are shot!
-
Unprotected intercourse is a risk for infection, but based on the HIV results you posted, you are negative. You need to ask your doctor, exactly which tests they are running to determine your HIV status. You can read about testing here: Testing Information (http://www.aidsmeds.com/articles/HIVtests_5029.shtml).
Every other test you posted has nothing to do with HIV and your doctor needs to provide some clarity for you as to your HIV status.
Joe
-
Update.....Western Blot came back positive August 3rd. From my post above i can almost pinpoint when I was infected - somewhere between May 16th through July 19th. I had 3 ER visits after that where i was feeling horrible - never did any of the hospitals ask or do a HVI test. That really bothers me alot...one day I hope that i can advocate for that. But right now I am constantly overwhelmed by this new diagnosis. Its all i think about.....
So i had my 1st ID appt Monday......CD4 285 and Viral Load - 43800 (which Dr was surprised as many VL's are in the 100K's?) - confirmed that low CD4 was bc i was just infected in last 8 weeks and it should go up with medication.......she mentioned a percentage and ive heard of people talking about it ? She said 13%?
CD4 285 and Viral Load - 43800 (which she was suprised as many VL's are in the 100K's?) - confirmed that low CD4 was bc i was just infected in last 8 weeks and it should go up with medication.......she mentioned a percentage and ive heard of people talking about it ? She said 13%?
I was recommended to get 2 vaccines (3 really but 2 were lumped in 1 shot). Hep A and B - bc the blood work came back that I am not immune to either so they want to make sure I am protected against that if exposed. Also a Prevnar 13 which is a pneumonia vaccine. The Dr said that all blood work looked good except my liver count was a little low but with starting meds that should come up.
Dr was pleased with all the blood work and my levels and said as long as I take meds every day at same time (keep it constant in my system) and take care of myself that I should be able to live a normal life. The Dr presented 2 medication options (Stribild or Triumeq) but was opting more towards the Triumeq bc if I do need to start an anti anxiety (i was on Zoloft a year ago and am considering it again as i feel like i am obsessed with this) at some point that the best choice was the Triumeq since it doesn’t have a booster in it? She also said that Triumeq doesn’t affect the liver or cholesterol as much as the other one.
So the medication came today and Im staring at it like it's my best friend and my worst enemy.....i should have NEVER gone on the internet to see all the side effects and this card that says CARRY THIS WITH YOU BC OF RISKS. Yes, i was tested against the allergy but im so afraid that maybe i could be this 0.000000000% that could still be allergic and die.
Help!!
-
PittGurl,
I have moved your thread from the Am I Infected forum to the I Just Tested Positive forum, where you will get the support you need.
Welcome to the forums.
Joe
-
Hi Pittgurl,
Welcome to the forums, sorry for your recent DX.
Glad you found us , the forums are filled with many kind , compassionate,
and knowledgeable people. If I'm understanding correctly your Triumeg
Just arrived ? If so it is your best friend and absolutely not your
worst enemy. Sounds like you found a good ID doctor.
I'm sure your overwhelmed and anxious , but try to relax .
You will start feeling and getting better everyday. You'll also find plenty of
support here !
Be well Gurl ,Wade
-
Thanks Wade - yes the med just arrived from mail order pharm - i was told that was best since sometimes pharmacy's (esp in suburbs) dont carry the meds due to cost and not as many diagnosis out here.
I feel totally alone - like a walking petri dish. I also am really angry at myself and at 1 of 2 people but bc i dont know i guess im mad at them both.
I do have to say that the Center for Public Health has been wonderful. I have been treated with respect and dignity and as if I am the most important person. The Dr, nurses, case manager, etc have all been a blessing. Yet my head is consumed almost every moment in thinking about death, and those opportunistic infections and what's if's 10 years later or even a year later....and what is the mail system goes down for med delivery .....i have HUGE anxiety!!! :(
-
PittGurl,
You're not alone, we are here for you. I felt the same way you did when I first found out a lil over 2 years ago, not sure who to punch so I ended up punching myself. I took off work for the rest of the week stayed in bed, didn't open the blinds, didn't answer my phone. It all went away when I contacted a close friend of mine and I told him and come to find out he had found out he was HIV pos just a few weeks before.
I have come to terms with my life, take my meds every day and I move on. Yes I feel like you when I go to the Dr. or any where I know I'm going to be taken care of so I assist and I help take care of me. You'll be fine as each day goes by and remember we are here for you; I joined this site and whenever I need to post something everyone has always been here, even if you just need to vent we are here. Stay happy and walk with your head up as if you were just crowned miss america. Stay blessed
Gam65
-
Thanks Gam65 - you made me feel like 100 bucks :) I feel like my entire physical life was yanked away :( I read about reinfection and the a supervirus if you choose to be intimate. I was somewhat about to puke when at the intake they handed me a bag of a variety of comdoms! I thought how could this possibly be!!! I never wanna think or do that again.
-
Thanks Gam65 - you made me feel like 100 bucks :) I feel like my entire physical life was yanked away :( I read about reinfection and the a supervirus if you choose to be intimate. I was somewhat about to puke when at the intake they handed me a bag of a variety of comdoms! I thought how could this possibly be!!! I never wanna think or do that again.
ojo Hello PittGurl...welcome ...I think you should concentrate in digesting your dx, take your med, if you were to be allergic, just call your doctor, he will tell you to stop it, that's it, you will not die from an allergic reaction...stop reading on the internet, and ask your doctor any question you may have...you are going to be fine as long as you take your med as presscribed, I've been doing it for the last 21 years, so, I think you can do it too...please keep us posted, and yes, you are not alone, let's us know when you need a hug, and we will send them to you,...best of luck...hugs ojo
-
Thanks Tonny2! 21 years WOW! Everyone says (dr's nurses friends, etc) there's no reason that you cant live a healthy life but my head just has so much fear. Yes, I am in counseling with church and through my dr. But there are times that I seriously feel like i have weeks, days, or hours left and it's not bc i feel bad - i dont feel anything at all right now - a little tired. Yet, starting this Triumeq in less than 13 hours is totally freaking me out. :( I could use hugs too :)
I just wish i could erase the past 3 months and change my choices :(
-
I've been on Triumeq since Dec 2104 and I haven't had any side affects or bad dreams, all has been well. Triumeq is the 3rd med that I've been on because Stribild would only affect my kidneys more. We all wish we could turn back the hands of time at moments when we dwell on our status but like I said before each day gets sweeter than the day before and I pray to God that he keeps my mind in perfect peace and I go on. I take med for depression as well but that's just to keep me balanced from all of the anxiety that I have to deal with.
Being pos is just something that's living with me, just like both of my hips that are pertruding into my pelvis and I'm going to have to have double hip surgery soon, earlier this year I had cancer surgery so overall I'm doing great. I'm glad that I made you feel like a 100 bucks.... :) :) :) :)
So hug yourself everyday and know that you are loved............ You are going to live a long and healthy life and the other thing that I've learned is that being pos has made me the healthiest person that I know because we go see our Dr every 6 months and yes taking precautions is what we do to protect ourselves and others that we meet in our future.
-
Ugh T-10 mins till I take the Triumeq :( Why is it so darn hard to do this! I hate reading stuff on the internet :(
-
Ugh T-10 mins till I take the Triumeq :( Why is it so darn hard to do this! I hate reading stuff on the internet :(
ojo Hello again, why don't you chamge your mind set from reading the side effect to the benefits of starting treatment...when you take your pill, thank God or life itself, that there is this medication that will give you life and it will keep you feeling better and enjoy life and your children (I think you mentioned you have kids, I'm getting old), you are going to be fine...let me tell you, that when I was dxed, my doctor told me that I would live for two more years, this was in January 1995, as I told you before, it's been almost twenty one years (November) since my dx...just last June, I went to my niece's graduation ceremony, and she told me,, "Uncle Tonny2, since you made it to my graduation, I want to see you on my wedding party", I also just came back from my old country, where I met my new grand niece (OMG, indeed, I'm old)...so, you will be around to see your kids, graduations, weddings even they will make you a grandmom...so, just take your medication and stop reading the internet, well, just keep reading us, ok?...best of luck hugs ojo
-
Tonny2, thank you for that perspective - ive been staring at this pill in my hands for over an hour. It's like i know I am so fortunate to have found out i was positive within 2 months of being infected and I know having meds in the USA is a blessing as opposed to other countries (as far as i know)
Yes, i have 2 kids alone (11 and 17) which is probably the biggest reason i didn't commit myself to a psych ward or worse when i found out. Its like the dr told me - then 10 days later i had an appt with intake. Between those 10 days i amsure the only way i stayed sane was thinking of my kids and God.
What does ojo mean?
I think the fact that my mom just had an allergic reaction (out of the blue) to a medication really has thrown me for a loop too in my head. I also get scared (and i know this sounds crazy) but what if i run out bc of a crisis in the US with the mail or a war or something so profound.....i keep thinking how to hoard these pills or where would i go or what foods would help? i know this sounds nuts - its just how my head works...im sorry :(
My dad just texted me TAKE THE HONKING PILL. I needed that laugh but am still looking at this darn HUGE pill! I keep thinking ok in like 3 hours i could be dead from this thing from some freak allergic reaction.
-
Welcome to the forums . I agree with dad ;) . I am wishing you the best and sending you courage to do what is right for you. My meds cause me zero side effects so you should expect little or no adjustment and wont even know the difference in two weeks. Its also important to remember that if this combo is not for you there are more to try. Best of luck !
-
What does ojo mean?
ojo Hi again...meds are good when you take them by mouth, holding the pill with your fingers won't do anything to fight hiv, so, take the pill and stay with us, so you don't feel alone, but it's time to do it for your kids, but especially, for yourself, because you want to be around for a while, don't you?...you doctor might have told you if you get a rash to call him, right?, so had the test done (sensitive), so, you are not allergic to it, stop thinking in swallow the saving life treatment...go and get a big glass of water and take it.
ojo=two eyes and a nose, it means to read my message
I'm waiting for you to take it...best of luck, I'll be here with you, you'll be fine...hugs ojo
-
Thanks JeffG and Tonny2 - Im at the point that I put the darn thing back into the medication Sunday to Saturday holder. Yes i have the test for allergy which came back Im ok to take this - no allergy......so its all in my head.....and im alone here at home.
Dont i have to take at same time everyday? Im more afraid to take it as the day goes on because then it will be night time....and what if I go to bed and get reaction and die.
-
Thanks JeffG and Tonny2 - Im at the point that I put the darn thing back into the medication Sunday to Saturday holder. Yes i have the test for allergy which came back Im ok to take this - no allergy......so its all in my head.....and im alone here at home.
Dont i have to take at same time everyday? Im more afraid to take it as the day goes on because then it will be night time....and what if I go to bed and get reaction and die.
ojo I don't know why you think you would die of an allergic reaction?...I did take the abacavir, pasrt of your med, there was no test on those days, I'm allergic to it, I got a bad rash, I looked like the pink panther, my doctor said to me, that I can not take it anymore...you know that you are not allergic to it....when do you want to take it?..I would take it at night, best, at the same time, and do not worry, you are no going to die in the middle of the night, wouldn't that be nice?, dieing, without suffering...ok, enough, as you are not going to take it right now, I will go and do some work...again, wishing you the best...poor pill...hugs ojo
-
because the card that came with it says in BIG letters WARNING carry with you at all times! Within hours you may get a life-threatening symptoms that may include very low blood pressure or death. i tried to attach a pic of it but i dont see a way to do an attachment.
-
because the card that came with it says in BIG letters WARNING carry with you at all times! Within hours you may get a life-threatening symptoms that may include very low blood pressure or death. i tried to attach a pic of it but i dont see a way to do an attachment.
ojo Helo again my friend, you are going to be the reason I would be fired from "work: (I;m cleaning carpets), lol, don't worry, nobody is going to fire me...do me a favor and do yourself a favor...you know that your meddication is a combination of three drugs, don't you?...look for the side effects of each drug,...I CAN TELL YOU THAT YOU WILL NOT DIE FROM TAKING LAMIVUDINE, THE OTHER ONE i DON'T EVEN REMEMBER THE NAME, ITS A CLASS OF MEDS (INTEGRASE i THIN) , i TAKE RALTEGRAVIR, , i'M STILL HERE, THE ONE THAT IS OF CONCERN, i THINK, (CORREC ME) IS THE ABACAVIR, WHICH YOU WERE TESTED BEFORE YOUR DOCTOR PRESCRIBED TRIQUEM...SO, PLEASE HELP ME OUT BY CHECKING THE SIDE EFFECTS OF EACH INDIVIDUAL DRUGS (i'M LEGALLY BLIND, SO YOU WILL HELP ME BY DOING IT FOR ME) AND LET ME KNOW WHICH ONE IS THE ONE WITH THE WARNING LABEL...BEST OF LUCK...HUGS OJO
-
I'm sorry Tonny2 :( I dont want you to get fired. I had my own business and bc of everything i went through since May/June i have lost my entire income....and i certainly dont want that for you :(
Yes i know it is 3 drugs - the BIG warning is the ABACAVIR. my entire day has been consumed by that A word! UGH! It's says the poop outta me - yes i was tested. WAHHHHHHHH
-
take your pill like a good gurl
only thing i would suggest, and would i say this for any drug or medication... first couple times you dose, take it in a safe place, somewhere no matter what happens, you've got a couch and a phone nearby, and your life responsibilities won't be thrown into turmoil if you freak out or pass out. see first hand how it affects you, instead of the fears the card puts in your head. once you know, you can fit your dosage time around your life and the known effects.
you can change your dose time without harm, not a good idea to dose at random times every day, but if night time works better, take it night the next time, then maintain the new schedule
you're not going to suddenly drop dead, or die in your sleep. we promise. if you have a negative reaction, you'll know, and you'll be able to respond to it.
(http://i.imgur.com/DezGH4X.png)
(http://i.imgur.com/W4kAJmm.png)
-
Thanks Zach - how did you get the pic to insert? that's exactly what is sitting right in front of me the past 6 hours- that card!!!!
-
i'm peeking in your window now! put some clothes on, it's the middle of the day 8)
no, really, it's a simple process
open an account with image sharing site... imgur or photobucket work well
upload whatever picture you want
i did a google image search for "triumeq warning card" came right up
upload whatever pic you want to post to the image share site.
once uploaded, you'll see a list of addresses on the sidebar... select and copy the "direct link"
paste that direct link into this text field, then highlight it, then click the button above all the smiley faces that says insert image
it will automatically place these [] bracket boxes around the direct link
click preview to confirm you've done it right
profit!!
now, go take your pill, then play with pictures on poz
(http://i.imgur.com/yRpiSXc.jpg)
-
Thanks Zach! :) hahaha and thanks for the laugh! :) I'll start pill tomorrow - id rather do in the morning with a smoothie so i can gauge how i feel all day. Plus, my kids have a 1/2 day and then there's the weekend so at least someone will be around me
-
Hi Pittgurl & welcome,
I'm so sorry you gotta be here but glad you found your way here.. It's also very nice you've gotten such good support by lots of members, and great advice too..
I've been on 3 different treatments since Jan.2014 but this present treatment Triumeq is the best bc I reached an undetectable viral load while on it :) so your on a great regimen and I'm wishing you lots of luck on it..
Taking it first thing in the morning is I think a very good idea.. I have my alarm set to a very good song as a reminder to take it in the morning, I have mine with coffee but a smoothie sounds even better ;)..
You shouldn't have to worry about OI's cause your cd4's are in decent shape and will only get better on Triumeq..
I think it's a good idea to be health conscious, eating right and exercise.. Also I don't know if you know but Viiv also offer's a coupon to help with copay for Triumeq..
I'll be honest here, at first I was angry, scared, sad, crazy, stupid, jealous and a big jerk.. and it took some time to get my act together but I did.. We all handle dx somewhat differently but what I've learned was that I'm a very lucky guy with love in my life and a life to live.. I wish you the same.. Lots of luck.
-
Thanks Almost2late...your name scares me :( and makes me sad....
I am SO thankful for the conversations everyone so far has had with me. It's helped me through so crucial times and even though i couldn't quite bring myself to take my 1st pill today the support from here has been amazing and so very appreciated.
So you are on this too....should i even ask side effects for you or will that cause me more anxiety LOL.....It just scares me how our lives are in the pharma's hands and really is there long term enough studies on these drugs? Im 43 and i think everything right now is a big QUESTION in my head.
It's been 1 month since i found out and im still consumed with it.....today i just sat here and cried and yelled because i dont want to believe it. I dont want this. And now Im so tired from being emotional. LOL...I want to believe there is more to life than this diagnosis .....then me feeling like everyone knows and its plastered on my head...that I will feel like a human again instead of a statistic :(
-
Hi PG
Just checking in to see if you noticed what almost too late included in his post above. "Viiv also offer's a coupon to help with copay for Triumeq." If you have insurance, Viiv's co-pay assistance card, which you print out from their website, is worth signing up for. You give it to the pharmacist, and then they have your number on file for all future Triumeq prescriptions until your card expires. Then, you sign up for a new one if the pharmaceutical companies are still extending this graciousness.
-
Hi Emeraldize :) yup i saw that about the coupon - thank you.
-
It's not plastered on your head, I thought that but realized not true..
I call myself a2l bc when I was dx I had pcp with 13 cd4's and was 40 lbs lighter than I'm now.. My name is Frank :)..
At 54, I work hard, bike 15 to 20 a day and enjoy life, all with 187 strong cd4's ;)..
No side effects, well I feel energized after my pill.. Our minds can play some awful tricks on us, its important to keep a good attitude which helps us deal with life, even people without HIV have issues..
This virus is very manageable on treatment and with a little sunshine you're gonna do just fine.. Stay positive, no pun intended, lol..
-
www.mysupportcard.com
A link to the coupon.
-
Thank you Frank - you are very encouraging. Im really blessed to have all of these interactions here....i really dont know how i would cope without leaning on you all. Thank you.....
tomorrow is a new day and im going to do my best to swallow that darn big pill with those letters and numbers on it....grrr....i hate meds to start with so this isn't easy knowing for the rest of my life i am going to be on medication. I dont run to get tylenol for a little headache or what not....but I know once i start it I wont stop bc of the same anxiety i have about starting it LOL.....reverse side effects a catch 22 for me....it's just that initial starting that is a mental block.....i am trying to focus on how its going to help me and to see my #'s change for the better and live for my kids.....asking for prayers of strength just to DO THIS!
-
I'm sorry Tonny2 :( I dont want you to get fired. I had my own business and bc of everything i went through since May/June i have lost my entire income....and i certainly dont want that for you :(
Yes i know it is 3 drugs - the BIG warning is the ABACAVIR. my entire day has been consumed by that A word! UGH! It's says the poop outta me - yes i was tested. WAHHHHHHHH
ojo Hello pittgurl, do not worry, I was just joking, I was doing some cleaning, and you were the reason I couldn'tt finish, so....did you take the pill?...remember that you are not allergic to the abacavir, which is the one with the label that scares you (I was scared too, when I took it, there was no test then,), please take it so I can finish cleaning...best of luck...hugs -jo
+ Attachments and other options
-
Tonny2 - morning LOL....uhhhh didn't take it yet - making my smoothie - i have an alarm to take it at 10am....6 mins - AGH!
-
I TOOK THE BIG HONKIN PILL!
-
I TOOK THE BIG HONKIN PILL!
ojo CONGRATULATIONS!!!...now, to keep your mind busy, how about if you help me finishing to steam clean my carpetets...do you like the idea?...you are going to be fine, you'll see...hugs -jo
-
GOOD GURL !
-
LOL Thanks Wade and Frank (Tonny2) - 2 hours later ....dont feel anything yet....trying to keep myself busy. Ive never cleaned any carpets but I am looking for a job! LOL :)
-
LOL Thanks Wade and Frank (Tonny2) - 2 hours later ....dont feel anything yet....trying to keep myself busy. Ive never cleaned any carpets but I am looking for a job! LOL :)
ojo good for you...you are suppose to say, "I don't feel anything, I don't feel my legs, don't feel my hands, etc", get it?...Frank (tonny)????? no comprendo...hugs -jo
-
ahahah :) si comprendo!
-
ahahah :) si comprendo!
ojo Could you tell me why you wrote Frank (tonny2)?...no comprendi...hugs, ojo
-
sorry - i must have gotten it confused with almost2late...my apologies
-
so you dosed?
and apparently have not died of horrible reactions.
this is at least anecdotal evidence.. no?
suggest if you do have side effects, keep a journal describing them with dates, and discuss with your doctor.
you'll find that mild side effects do occur, but usually subside within a week or two as your body adjusts.
you may also have some initial reaction of your immune system. it now has the weapons needed to fight your infection. your body is going to battle now.
think whac a mole with little green viruses, getting beat down every time you take your medicine.
-
Yes 10:10am 1st dose and now it's 8:25pm.
So far nothing.....seriously NOT A TWINGE! Im under a little stress from my teenage daughter so that could be why ....LOL...but seriously...only thing i noticed was that i wasn't too hungry today. But it could be that humongous green smoothie i took it with LOL Im trying to drink one with kale, spinach, blueberries, coconut milk, greek yogurt, chia seeds and a banana every day (of course with some substitutes)
What kind of initial reaction of immune system?
-
Your Cd4 count is high enough and your viral load low enough that you need not worry about an immune response from treatment .
-
Thanks JeffG
:) :) :) :) :) :) :)
-
You are very welcome, congratulations, you are on a combo you tolerate well and it will kick HIV’s ass and you can get on living a good long life.
-
sorry - i must have gotten it confused with almost2late...my apologies
ojo Do not worry, but you got me confused, between tonny, tonny2 and other users name, I almost forget my real name...I{m glad you are feeling great...I{m with Jeff, you will not have mayor problems with the reacciontio of your immune system...keep us posted and good luck...hugs ojo
-
I TOOK THE BIG HONKIN PILL!
That's great, hope it all went down smoothly with a smoothie ;).. And continue taking them each and every morning, its very important to remain consistent..
Hope your day went well and you are not dwelling too much on the virus.. You've taken the most important step to dealing with it and now you can just get on with life..
Whenever you feel its getting you down, come back here and talk to someone, that's what this here is for.. There is even a lady's forum here for if there's a topic you just don't feel comfy talking with the boys..
Also, try and refill your rx early if you can, I've been trying to get mine 7 days before its due, slowly creating a surplus of meds just in case of a zombie apocalypse ;D.. it's no fun going to the drug store and being told that there "out of stock".. Hope I'm not overwhelming or scarring you, I really just want to help..
Hey Tonny2, I'm flattered she confused me with you ;)
GROUP HUG!!! Lol
Edited to add.. My god I'm slow, 4 new post while I typed 1 :(
-
You guys are so encouraging - thank you!! Once i took the 1st pill i know i wont stop - that i think was also a struggle - knowing i would be taking pills forever. I am more scared NOT to have it...i was explained that the pill is like putting a lid on the virus (she said like lots of little spiders! EEEK) and if i dont take it the lid comes off...well that is scary! So no worries of me not committing to take it....im in it now for the long haul. (praying it's a long one)
Oh gosh please dont bring up not having access to the med....that is also a huge anxiety to me! Mine are sent via mail and from what i am told they call a week before i am out....plus i have 2 extra right now from starting late..... how else to stockpile LOL....
-
Just make sure to get refills as soon a possible and you will eventually build a stockpile .
I have lived with HIV for over 30 years, if I can do this you can too .
-
Didn't mean to frighten you.. I get scared too but not since I built this little cushion.. I was also terrified when I started meds and even more at what would happen if I didn't..
Yes, for the rest of our lives these pills but many other illnesses carry the same kinda cross to bare..
-
ojo Hello PittGurl...how was it on your second day on med?...are you ok?...hugs
ojo
-
Hey Tonny2 - well i am still here. LOL.....again 10:10am took the big pill.....another smoothie to down it. LOL....so far still no side effects...that I can notice...Im on alert though. I'm sleeping well, not jittery, no weird dreams, nothing GI....seems ok so far....yet i think someone had said that effects could ramp up over 2 weeks and then subside....sooooo....my mind is replaying that again and again.
Went for a 30 min walk today....so far so good! Thank you for checking in on me....means the world to me as only a small circle of friends know and I think ive exhausted them on my constant text and calls freaking out over the past month :(
-
Grats on getting over your fears and taking the first step toward getting healthier and knocking the virus on its ass.
You really shouldn't have any side effects or feel anything from the meds. Just set up a system where you remember to take it each day. I use an app on my phone called Pill Monitor that reminds me to take mine and I check it off that I did and it keeps a record for me so I never forget and can go back to make sure I took it.
Other than that...thats it. Remember to take your pill in the morning and go on with your life. The anxiety, anticipation, and emotional roller coaster you've been on is 1000 times worse than the actual pill. That pill is gonna help your body to keep your virus in check to leave you alone and let you be healthy. It only gets better from day 1 and sooner than later HIV becomes the last thing on your mind.
-
Thanks GoFor It.....yes i have my alarm on my phone but maybe an app as a back up would be a good thing to do too! thanks!
I sure hope I get where you say I will....i can't imagine it though. My head is consumed with this - i lurk on the pages reading different forums trying to grasp everything i can. And then i end up exhausted.... :(
and im still very angry....although yes no one forced me to have unprotected sex.....i am angry at myself and at the 2 possible people...one being my husband that slept around.... (and left us in June for yet another woman) and then a rebound guy. :(
-
you have nothing fear, not now, not two weeks from now
you are doing great... keep going
do not let nagging fears and anxieties overwhelm you
let go of past, of how/when/where you were infected...
the only thing that matters is how you move forward
you got this
-
Same boat as you. When it first started...I lurked forever until I was emotionally drained. Looked and read everything forever. Sooner or later it just becomes accepted but the important thing is you did the right thing. You got tested, you got medication, and your taking it. That is going to keep you healthy and that is all that is important. There are so many other problems in the world that require invasive surgery or can't be fixed at all. HIV is a pretty simple one that just requires a pill so that is a plus in my mind. Its like diabetes..except they have to give themselves insulin shots which is much worse in my mind because I hate shots/needles and couldn't do that every day without cringing. Swallowing a pill is easy.
What is sad is how many people are living with HIV and don't even know it. They never get tested and it ends up being too late. Doing the responsible thing, staying knowledgeable and acting with responsibility is going to save your life and you will see over time if you stay adherent to your meds every day you will pretty much forget about HIV in your every day life.
This message board is very encouraging and really removes a lot of the stigma. Many members have been around forever and even started with some of the worst medications that had many side effects and were much harder to take. Today with only 1 pill, no side effects, its a pretty nice world we live in I think that we are so lucky to have an answer.
-
PittGurl,
I'm so glad to hear that you took your meds, it's only a pill. Just like eating lemon heads or something that you love to eat. Taking my meds is a part of my life as if I'm putting on clothes, keep it up and before you know it you won't even think about it. And remember we are here for you.
gam65
-
Hey Tonny2, I'm flattered she confused me with you ;)
GROUP HUG!!! Lol
Edited to add.. My god I'm slow, 4 new post while I typed 1 :(
ojo Hi, almosttolate...just a regular guy trying to help and leat from others, even living with the bug for almost 21 years and going through a lot of OIs, I'm still learning from you newbies...hugs ojo
-
Thanks Zach for being encouraging. :)
GoForIt - I know it's not the worst thing in the world to have this compared to alot of other issues. Once i get over the anxiety of the medication, and the actual diagnosis im hoping i can deal better. The OI's scare me - bodies are more susceptible to stuff right? so now the risk of cancer and other stuff is more easy to get? Plus, im only 43 and who would put themself at risk to love someone - i feel like that part of my life is totally ruined and gone. Isn't there risk of 2 HIV people infecting each other with a more potent super bug? Maybe i read wrong?
Gam65 - today i downed the pill without fear. It's Day 4 - anxiety hit a little last night...not sure why. I had a family get together yesterday and told my only sibling and his wife. Both of which totally get it and totally supportive - even knew an older person that has it. {by the way, i want so bad to write HAD it} UGH!
Tonny2 - hi! LOL :)
-
Hi pittgirl! nice to meet you but im sorry for your Dx. Like you i was just Dx'd recently but i have yet to start meds. I think watching you start meds and having absolutely no side-effects gave me the courage to go to my next ID appointment (sept 14th) and ask to be put on meds no matter what my cd4 count is :)
Ps. You are an amazing mom :)
-
YoungNScared - well, as much as you feel that I helped you- you just made my day. Thank you for sharing! :)
My appt with ID was supposed to be 9/15 (45 days from initial dx and 30 days from my 1st appt with intake nurse). However, they had a cancellation and got me in 8/31 and as glad as i was to get in 15 days earlier - it totally rocked my emotional boat as i had a friend lined up to go with me to support me. I was a wreck - i still cry from time to time in unbelief and wanting to go back and change my actions.
As you can tell when you read this i have HIGH anxiety - i question everything and i probably take it higher than most people. The people on here are AMAZING and there's no way else to say it but sent from God! My new best friends ;)
They helped me get to where i am to take the HONKIN pill (as my dad said). It's now Day 4 and still no side effects, and mind you....I AM LOOKING FOR THEM LOL.....
-
Isn't there risk of 2 HIV people infecting each other with a more potent super bug? Maybe i read wrong?
the only way possible to create a "super infection" (being infected with two mutations of HIV that are resistant to different meds) is when two HIV+ people are not on successful treatment (meaning they both have greatly elevated viral loads because either they are not on meds, or their meds are no longer working) and have unprotected sex.
there are only a few recorded instances of super-infection; but one I think is a great example/explanation. Two dudes were in the hospital with AIDS, both dealing with OIs. So even though they were sick enough to be in the hospital, and both had high viral loads, they had unprotected sex. Each of them then had HIV resistant to their meds and to the meds the other one was taking. What a terrible risk they took and what a mess they were left with trying to find a treatment regimen that would work against their newly multiple mutated HIV.
When people are on successful treatment (undetectable) then the meds act as both PrEP (pre-exposure) and PEP (post exposure), protecting the individual from any new HIV infection. We also know that people who are undetectable for a long enough time simply don't transmit HIV.
-
leatherman - honored to see you here- as I've lurked around the boards reading i have seen your advice and posts....thank you for posting :) and for the explanation. I just pray one day I can say i HAD this and not HAVE it. :(
-
To your question. If you take the meds every day and get your VL to UD the chance at OI is so much lower. Before I got on meds I was so tired all the time, I was getting ulcers in my mouth similar to thrush, and feeling like I had a flu of some kind. Once I got on the meds it all went away. My energy came roaring back and I started working out in the gym again and running much farther than I ever would normally as it felt so good to get all my energy back. I wouldn't waste time thinking about what MIGHT happen. Just be very glad in this day and age we can diagnose and treat with medication that has no side effects. I wake up every day, pop my pill, and I don't even feel anything from it, not the slightest effect. I know I feel lucky to have found the right medication regimen and be able to turn my life around from sick to not sick. Don't worry about what MIGHT happen and just move forward doing the right things like taking the medication and staying healthy in both mind & body. The only thing working against you is stigma in the mind. Just think about all the people walking around on this planet who have it and have not been diagnosed living with it ;/ You've probably passed by so many people with HIV or met someone with HIV and you never even knew it and franky neither did they. Makes you wonder what other diseases are out there that we have not yet identified and even started working on medication for. The push to further advancement in HIV treatment is larger than ever and I'm 100% sure the medications are only going to get better and better as science & technology advances. The level we are at today with the medication is a clear cut example that when people put their mind to something they can achieve amazing things.
-
Thanks GoForIt - i obviously am almost living on these boards (my quick replies LOL)....i dont know if its bc i was just infected sometime in the last 2-3 months but i am tired after like 2-3 hours...and I have a slight cough....the 2nd of which concerns me. No wheeze, dr said lungs are clear, i can walk, do stairs, etc and no problem, cough doesn't wake me up, it's a dry cough nothing raspy or wet and usually it's like once cough and that's it.....a few hours later again - 1 cough.... But still....with my anxiety....i think cancer of lungs, or pneumonia (just got the shot for it last week)....scares me....Sometimes, i am talking and all of a sudden i feel like i need to cough. Right now, i am telling my head that it's my ex that was smoking around me constantly back in May/June (im not a smoker) and/or the quality of the air (its been bad for asthmatics lately with the heat...and i have a touch of asthma) and they are doing construction outside my condo taking down stucco and putting up vinyl siding.....
Think I have anything to worry about?
-
Yup, I was in your shoes a few years ago as well. I spent every waking minute reading the boards and it was an obsession at first as I was so concerned and uninformed on the entire topic. All I knew was stigma and basically that guy from Real World on MTV passed from it, Freddie Mercury passed from it, and Magic Johnson is still around with it. Felt like I had just entered a coin toss with my life. But after I found an amazing doctor who explained everything to me and the level of where medication is today and felt for myself just how great the medication is, I very quickly got back to my life and I only check the boards once in a while now when I'm bored. But my health is in tip top shape and I haven't gotten sick in 3 years with even the slightest flu or fever.
Your body is going through a process of healing itself right now as the HIV in the blood is basically turned OFF while you are on medication. You will feel slightly tired in the first couple months because your body is working hard to regenerate.
The issue with the impurities of the air and your boyfriend smoking I think you answered your own question. Get away from people who smoke. Smoking cigs will kill you and 2nd hand smoke can kill as well. Has nothing to do with HIV. But people with HIV are more susceptible to infections in areas like the lungs so its just another reason to stay away from smoking which is known to kill any and everyone regardless of HIV. I never liked being around sick people or impurities in the air even before I was diagnosed HIV+ and I still don't like being around that environment. Everyone on planet earth eventually gets a slight cough at times its nothing to worry about if it just stays a slight cough. If you are ever really concerned about it go to the doctor and get checked up. Don't worry about cancer. I know people who have passed from cancers that never had HIV and were very very young. They got a cancer diagnosis and needed immediate invasive surgery that failed and they passed. Cancer is an awful awful thing so much more serious than HIV. HIV has a pill answer where cancer does not. Stay away from cancer causing things like smoking...smoking would be the cause not HIV. HIV causes certain kinds of cancers, but ONLY if you do not take medications and let OIs get out of control through years and years of being infected yet not taking any medication to put it in check. But if you take medication you never get to that level.
Its about getting yourself to a healthy place. Clean up your environment and it will reflect on your mind & body. Eat healthier and it will cleanse your body and make sure you take the medication. This will send you right back to being as healthy as anyone else on this planet with the same chances everyone else has of having something positive happen to them as well as negative...
-
GoForIt - thanks - gosh i feel like you walked me shoes LOL....those were the only people i knew who have it too.
Yes my exhusband (who was the possible infector) was a smoker - he left us back in June for another woman (whom he had gotten pregnant twice)...long story....
I hate cigg's and the smell :( all this craziness about people wanting to LIVE and yet they smoke...i know it's an addiction - its like a double edge sword ...buy smokes and yet give me healthcare to save my cancer from smoking. Anyways, who am i to judge.....
LOL u made me laugh bc even before this dx i paid attention to people that didn't wash their hands or cover their mouth properly when sneezing or coughing.... LOL...in church i hear people cough and Im like AGH let me outa here!! LOL....so yes I get that! I stay away as much as I can from any sickness....
-
Ya. Its crazy. I am just like you. The longer you are on medication the more you will see that its just another responsibility you have to take care of. And its better to take care of it by taking medication every day than resenting it and ignoring it like many people do and then its just way too late. When I first heard about HIV (being younger) I thought, Gosh if I ever got that I wouldn't want to know I had it...just kill me because I don't want something so horrible. Fast forward to my late 20's and wow....some how I end up with it. Well thank the lord there actually is a medication that works as amazing as it does today because I was just a stupid young kid with complete fear rather than being educated and understanding the real situation in 2015 vs 1980s. Thank goodness HIV is so manageable today. So many worse things out there on this planet to fear or worry about. We got crazy people shooting up movie theaters for no good reason these days....
-
Saw the screen name, had to stop by and just say "hello".
I hope you are starting to adjust, and glad to hear that you identified the infection pretty early on.
I go to the PACT clinic in Oakland myself for treatment, which is part of UPMC. Very good care there- and kind, and very supportive of those newly diagnosed.
-
Hi Pittman - LOL...yeah the screen name gives it away LOL...although I moved from Pitt a few years back further east towards Philadelphia to be near family. I miss Pitt terribly!!! :(
Anyways, thanks for the encouragement. Today is 1 week from day i started Triumeq. Still feeling a little tired, not as much anxiousness day to day and a little foggy, also not too hungry either. All in all though i guess that's ok considering, right?
-
ojo Hello PittGurl...how are you?...no third leg or arm yet?, I hope no...judt checking on you...hugs ojo
-
Tonny2 - wow - thank you for checking on me! Seriously....that means ALOT!
ok so 1st things 1st - no 3rd arm or missing body parts LOL. Still tired but no jitteriness or anxiety like before. no other really mentionable reaction that I can think of. sometimes i dont sleep too well but i think that is more anxiety and my mind racing on this than the Triumeq.
Today was my 2nd labs since DX - wow only 5 tubes compared to like ...25 before??? LOL so ive been on Triumeq 16 days and that's pretty early to do lab work but whatever. Med nurse said dont be too disappointed if #'s for CDL dont rise too much and VL doesn't drop as much - usually they like to wait 4 weeks but i think the dr office prob mis scheduled me too early. Anyways, im hoping for some magic LOL :)
However so now that is out of the way.....my 17 year old gets sick (a cold) and i think she passed it onto me - this afternoon feeling yucky and sneezy and more tired and eyelids burning and just run down.....SO GUESS WHAT THAT MEANS?!?!? .....yeah anxiety over what if this is pneumonia (i got vaccine about a month ago) or how is a cold going to affect me ....or what if it's more. :(
So now am drinking herbal tea and honey like crazy and pushing the juice ....can we fight colds just as well as others or no? i have no idea and you know if i google it the internet is going to tell me i am going to die in 30 mins. LOL ;)
-
Hi Pittgurl!
Don't worry about getting a lil bit sick if you do. Your numbers are not bad and treatment Will keep you healthy just just like any other negative person. My VL was 80 million! and CD4s were 57 (2%) and I'm still alive! never got PCP or any other serious complications due to AIDS.
I'm on truimeq as well almost UD but not quite there yet but every test my VL is lower.
And stop reading the Internet because if any of the crap was true I'd be dead lol.
We're all gonna be just fine. :)
Kind regards.
-
Hi efox020 - LOL thanks for the reply and your encouragement! I went to bed early and feel much better....these kids bringing home first weeks of school germs! UGH! I must say WASH your HANDS constantly! LOL
How long have you been on Triumeq?
-
UPDATE!!!! :) I was having a terrible last few days....but nurse just called me .....
9-21-15 labs after 16 days on Triumeq CD4=570; VL 26!!! HOLY COW it's working!
I hope it continues to do what its supposed to do and no long term issues !
-
UPDATE!!!! :) I was having a terrible last few days....but nurse just called me .....
9-21-15 labs after 16 days on Triumeq CD4=570; VL 26!!! HOLY COW it's working!
I hope it continues to do what its supposed to do and no long term issues !
Wow that's pretty awesome! Any noticeable side effects?
-
Congrats on your awesome results! Im sure it helps to get some good news.
-
Thanks ChrisnTX - yes it sure does! Now just to find a job which i think i did!!! :) Then i think some of the stress is going to reduce...ya know when everything gets yanked away from you physically, financially, parts spiritually, and almost mentally - it really brings you to the core of who and what you are. My kids are the only reason i didn't fold the cards.
TriPolarTroy - side effects...well I have alot of anxiety that was caused from my husband coming back, then leaving a month later for another woman and ...well it's a long story....but anyways....situational anxiety and stress. Then to get a DX on top of that like this...you can only imagine. So what some would probably relate to situation i started relating to the meds. To be honest as i look back - mind you only 20 days so far of meds....i would say....some jitteriness - like a shot of coffee for a little while, other times tiredness, sometimes headaches (not bad though only if i dont eat or get enough sleep), and a day or so i kinda felt out of it in the beginning. I try my VERY BEST and so far haven't strayed from it - to take it every day within 1 hour or 10am. That way i dont get any drop off effects - i dont know if there are any but i dont want to take chance.
I havent had any GI issues or bowel issues with it. I sleep pretty well - no weird dreams or stuff like that.
-
Oh thats great news on the job too, I very much understand where you are it Im just now starting to get back to feeling normal mentally, physically, spiritually. It's a nice feeling to finally start putting things back together and feeling like its gonna be ok.
Sorry to hear you have personal issues causing you more stress than you already have from the diagnosis, keep chugging along and it sounds like you'll come out of it all in the end. :)
-
ChrisnTX - i sure hope so!
-
Thanks so much for the fast reply
-
How long have you been on Triumeq?
Hi Pittgurl! I've been on Truimeq for 3 months now Prior to that I was on Prescobix/Truvada. Congrats on the new lab results!
I'm still not UD yet I've must have one bitch of a virus.. hopefully I'll be UD by my next labs. :)
-
UPDATE!!!! :) I was having a terrible last few days....but nurse just called me .....
9-21-15 labs after 16 days on Triumeq CD4=570; VL 26!!! HOLY COW it's working!
I hope it continues to do what its supposed to do and no long term issues !
ojo Hello my friend...you have a long thred that it is difficult for a almost blind guy, keep up with you, lol...I think I already congratulated you on your other thread, thank God its shorter, lol, but any way,, if I didn't do it...CONGRATULATIONS!!!...you want to know how long it took me to get an UD reading?, from January 95 to March 2007, yes, 12 years, I HATE YOU!!!, lol...you newly dxd people, are so lucky for having better treatments, now, and even better I hate you even more, lol...you just take one darn pill at day, hum, lol, I'm taking four different pills twice a day...well, it is what it is, congratulaciones again, and I think I read something about a new job?, good for you, keep yourself busy and you will not be thinking too much about your bug...kids, ok?...hugs ojo
-
efox020 - thanks! question - did you have any muscle tightness? I feel like ive been working out my chest, neck and shoulder areas but i haven't. Dr said she is running some kind of blood test next labs to check on that. :( Nothing below the waist though - no legs, thigh, lower back tightness that I can tell
Tonny2 - my buddy! :) hahah please dont hate me :( Im only following drs orders LOL Yes a possible new job - just waitressing for now for some quick cash but who knows. Love the people aspect of it - dont love the way people eat aspect of it LOL....nasty ! Kids are doing well too- thank you for asking!! How was your weekend?
-
efox020 - thanks! question - did you have any muscle tightness? I feel like ive been working out my chest, neck and shoulder areas but i haven't. Dr said she is running some kind of blood test next labs to check on that. :( Nothing below the waist though - no legs, thigh, lower back tightness that I can tell
Hi Pittgurl
I've had body aches and fatigue I'm not sure it's related to triumeq. I'm going to wait a bit longer and see if it goes away. How's your muscle tightness, has it improved?
-
Hi efox020 - yes i am still pretty tired - feel like i could nap all day! But I also get some spurts of energy once i get started so Im not sure if it's the meds or just depresssion. Yes I still have muscle tightness....it's odd - but labs came back ok from the blood test. Ive lost some weight though over these past 4-5 months too so i wonder if that could be it.
-
Hi, Gurl!!! I see you are doing better and that you are taking that big pill... It comes down easier as time goes by!!! Love your numbers!! GREAT... Keep up with it and we all be survivors.... As someone said (and my doctor) stop reading all the junk is written in the internet... Surround yourself with people with knowledge and experience and keep a positive (pun?) attitude.... Great to hear you are doing well.... :) :)
-
Hi JosephP - thanks for response....yes am taking that BIG HONKIN pill - ugh - luv and hate it all at the same time....somehow I started hating the word "positive" ugh....
ive taken some steps back in my head and in my life from things and people i dont need. im usually someone that would do anything for anyone even before taking care of me....im quick to say yes to everything.....i learned pretty quickly that I need to take care of me. Even ahead of my own kids.....right now - im back at ground floor and having to rebuild me - if i dont rebuild me than I can't be there for them and they are all i have. I felt like i was pretty close to mental breakdown... :(
-
2nd labs today since Triumeq - waiting for response....hoping it's good. I still hate taking this darn big pill though. Also, in another thread (sorry moderators!) i've notice alot of hair loss by the follicle. Not sure if that is stress related, the virus, medication or what. Right now that's really bothering me. I also started to feel nausea about 2-3 days ago which hasn't happened at all since starting the medication.
-
2nd labs today since Triumeq - waiting for response....hoping it's good. I still hate taking this darn big pill though. Also, in another thread (sorry moderators!) i've notice alot of hair loss by the follicle. Not sure if that is stress related, the virus, medication or what. Right now that's really bothering me. I also started to feel nausea about 2-3 days ago which hasn't happened at all since starting the medication.
ojo Hello my friend, how are you?...I see you are still having stress problems...when will you see your ID doctor again?, ask him about your hair loss, I have taken two a the meds on your med (abacavir and lamivudine, tho, abacavir didn't take it for a long time, I'm allergic to) but, I never had problems with my hair, you could use my head as a mop, because I have a full head of hair, lol, I think that you are living with lots of stress, look for proffesional help to help you get adjusted to your new normal...stop hating what is giving you a second chance, stop hating what is giving you a chance to keep enloing your children, stop hating your pill, that there are a lot of people in our countries whom are taking still, toxic meds, like azt, and not just one damn pill, but more than you can imagine..just a thought my friend, I wish I could find the words to make you understan that you are going to be fine, I wish I could find the words to make you feel better, so you can go back to live your life completly...hugs ojo
-
Tonny2 - thanks i hear and get what you are saying...Im trying ....I really am...but some days I guess i am just so bitter about this. It hurts that someone didn't tell me they were infected and thus i feel like my carefreeness has been robbed. I'm more careful now with so much and aware of so much (coughs, cuts, flirting). Just feels like a world that I dont fit in any longer.
My next appt is mid Nov - there are no openings until then. It's 6 weeks from the last appt although i did my labs today at the 4 week mark. I'm hoping that she will allow me to now have a glass of wine or beer since it's been 6 weeks on the medication. She wanted to wait to make sure liver function was normal.
I have a case manager and another person that I am meeting with that are helpful in my emotional struggles - i haven't seen them for a little over a week so i think i am going to make an appt. I was focusing more of getting a job.
-
need you experts on here as i am waiting to hear from nurse.....CD4 count went from 570 to 522 (im now 6 weeks on med)....now ya'll know me and I am freaking out- WHY did it drop??? I dont have the VL back yet but shouldn't CD4 be rising? I did lab first thing in the morning. help!!!!!!
-
CD4s fluctuate throughout the day by as many as one hundred points or so. You have nothing to worry about. Your CD4's are above 500, so are in a "normalish" range. At this point in treatment, it's more important that you attain and maintain an undetectable viral load, so here's to hoping you do. You are doing well. No worries.
-
need you experts on here as i am waiting to hear from nurse.....CD4 count went from 570 to 522 (im now 6 weeks on med)....now ya'll know me and I am freaking out- WHY did it drop??? I dont have the VL back yet but shouldn't CD4 be rising? I did lab first thing in the morning. help!!!!!!
ojo Hello my friend, mine went down from 578 to 414, and I'm smoking a cigar...there is not changed in your numbers, well, they are just numbers...they change frecuently, do you know your cd4%?...I'm sure you will be UD, that's the number you need to concentrate for now...so, please, do not freak out, your cd4 is still() the same even though the numbers look different, trust me, don't you?...you need a big hug, here it goes... () ojo
-
Got results on the VL today......
10-27-15 labs after 7 weeks, 4 days on Triumeq
CD4=522
VL UNDETECTABLE!!! ;D ;D ;D
-
Got results on the VL today......
10-27-15 labs after 7 weeks, 4 days on Triumeq
CD4=522
VL UNDETECTABLE!!! ;D ;D ;D
Well done !
-
That IS great news ! Congratulations.......
-
That's awesome!! I get my first labs back in 2 weeks (Blood drawn today) after 4 weeks on Triumeq ....anything lower than 60,300 would be great lol
-
Got results on the VL today......
10-27-15 labs after 7 weeks, 4 days on Triumeq
CD4=522
VL UNDETECTABLE!!! ;D ;D ;D
ojo ojo hello my friend...I told you, now that you are UD, stop browsing in here and go and get a job...let me ask you this, would you rather have your previous cd4 and not being UD, or are you happy with this cd4 levels?....happy for you amiga...big bear hug...welcome to the UD club ojo
-
Jeff G and Wade.....Thanks to all of you for the big congrat's!
Tonny2 - you know my smart comment is going to be ....I would rather not be here at all ;) LOL but since i am....im glad you are my buddy!
TriPolarTroy - im praying for the best for you!!! It's gotta be good news! Keep me up to date!!! Usually CD4's come back within 24 hours - the VL is the one that can take about 3-4 days. (at least where i am)
-
Jeff G and Wade.....Thanks to all of you for the big congrat's!
Tonny2 - you know my smart comment is going to be ....I would rather not be here at all ;) LOL but since i am....im glad you are my buddy!
TriPolarTroy - im praying for the best for you!!! It's gotta be good news! Keep me up to date!!! Usually CD4's come back within 24 hours - the VL is the one that can take about 3-4 days. (at least where i am)
ojo Hola amiga, I'm just happy for you you will be fine, I'll see you back here in 20 years...va?...hugs ojo
-
Question - obviously there are long term effects to all meds.....anything specific on Triumeq?
-
Question - obviously there are long term effects to all meds.....anything specific on Triumeq?
Yeah I have the same question
-
Hi I'm coming into the conversation late. Sorry about your diagnosis. I was infected as well by my now deceased husband. I have been positive since 1999. Didn't start taking meds til 2010. A body can go a time without meds, but from my experience, 9 years seems to be the average time that the HIV overcomes ones health. Who is to say I would have been better off or worse starting later or sooner. I do know the meds can have ill effects, but the benefits outweigh the risks. Every body is different.
I am a 43 year old woman, and am doing fine now. I'm on Triumeq as well. Started on Atripla in 2010. Tried another in case of pregnancy. Now off that regime. I think the thing is to be healthy in your life and spirit.
Yeah, the dating circle gets smaller and can be bleak, but honestly, it wasn't much better before, and HIV's silver lining is showing one's character. If that makes any sense. I have had men wanting to date me despite the HIV. I always am upfront about my status.
I have no current side effects from Triumeq. Most of these new drugs are just recombinations of older ones, with some tweaking to get the ill side effects out. Triumeq goes down easier than the other meds I have taken. I think I have been taking it since August. Atripla made me feel whoozy headed and drunk after taking it. I don't miss that.
Due to my vanity, one thing I worry about is facial fat loss. But that comes with age anyway. I had lost too much weight at times and that in itself takes a toll. Stay at a healthy weight.
Eat extremely well. I eat so much healthier than I ever did.
Exercise and rest when needed.
I think the depression and isolation that comes with the idea of being HIV+ can take a big wallop on ones health.
All things happen for a reason. I try to see what the this experience is teaching me and how it can help me grow spiritually.
Wishing you wellness.
-
chwhyoche - thank you for your response...i too am 43 year old woman infected by my ex-husband (or possibly 1 other person) :( I dont even know if either knows or not.
Im surprised (have heard this before but still ...) at hearing that someone would chose to date someone with HIV when they are not positive themselves. There's no one for me to ask why that thinking....do you have any idea? I know love overcomes alot but HIV to me is HUGE and the what's if's of infecting the other person or the burden of taking care of someone....maybe im just ignorant in know all the facts yet but I guess i feel like i would be putting alot of responsibility on someone. :(
Anyways, im really thankful to know that you have been on it too - only a month prior to me but still. :) I find that I am pretty tired still but i think i am depressed and in the phase of still somewhat denial, angry, worried, - a big mess :( I dont cry as much anymore but it still hurts really deep -esp since my kids have no one but me....scares me
-
ojo Hi, my favorite lady, pitgurl...hugs on your way................ojo
-
Tonny2 - thank you so much :) YOu are a true blue friend ;) Praying for your eyesight
-
I don't really understand either why someone would choose to date someone with HIV. Maybe they are ignorant. Or maybe they really care about the person. But still, its not something to be taken lightly.
One older man wanted to date me, and he did not know my status. Besides not being interested, I did not want to mislead him and told him my status. He did not care and still wanted to date me. I thought that strange.
I dated one guy for about 6 months. Thought things were going okay. Then he freaked out with worry. He was negative. He had other major issues though. I usually attract narcissists. Overall nice ones, but still.
Next man was HIV positive, but was bipolar and relapsed from addiction suddenly, and overdosed. He was a good soul.
Another was positive, but some of the ways people get this disease are from behaviors that are not conducive to a monogamous relationship. Honestly, he had been to too many group sex fests, probably way out their type sex, and could no longer get an erection from just normal interaction. Or maybe he had no attraction. He bailed.
I have hope I have met someone finally that would last, but besides the HIV, he has major detachment issues, fear of relationships.
All good souls, but I'm realizing that there are maladies of the soul that are far more debilitating than HIV.
I'm not sure how my husband got it. He had been highly promiscuous. I seem to attract men that have been highly promiscuous that want to finally settle down. Most don't know quite how to go about relationships. Lots of fear of abandonment, attachment and loss of what they perceive as freedom. Though I must have my own issues to keep gravitating to such dysfunction.
lol Kinda all depressing in a tragic comedy sort of way. I do get depressed because I do miss being married in a monogamous steady relationship.
I have heard that HIV is pretty hard to transmit if the person is undetectable. I'm sure there's still a slight chance. But if the lid is kept on the can as you said, then the risk is small.
I understand how scary it is of being a single parent, but you and I will be fine. Take your meds. You'll stay well, and grow old and be healthy.
Do take iron and calcium, as the meds seemed to leach the bones, probably along with the chemo. But he always had health problems since birth.
One good thing is that I hardly get sick. No flues, rarely a cold. The meds annihilate all those bugs. But we do need to be cautious about things like our liver and kidney function, and our bones. I drink a vegetable fruit smoothie every morning, take cod liver oil, as well as a vitamin D supplement, B vitamins, calcium. Red palm oil, coconut oil. I separate them out of course. Vitamin D is critical for those with HIV, as with other immune suppressive diseases. Some of these doctors don't stress this enough. But they don't live with this. I've done my research and felt the effects of low D, and yes it is critical.
I console myself with the knowledge that things happen as they are supposed to, life unfolds as it is meant to, all that is, is how it is supposed to be. Our task is to learn the lessons the experience gives us. We are souls first, bodies second, and this is definitely a soul journey.
-
chwhyoche - your post was a balm to my soul....thank you for taking the time and writing out all you did....i haven't met anyone yet that is a lady, hetero and single now. The women's board isn't very active which is frustrating too :(
Do you live in a large city? I live in a very small town and there are little if NO dating options, plus it would leak out quick :( i can't risk that....and honestly....not sure how i would ever trust a man again since most likely my husband or the other man after husband left me - one of them knew and gave it to me :(
I totally get what you are saying about attracting dysfunctional men....i too have that issue....i wish i knew why! Maybe i dont feel i deserve someone as good or better than me. Im seeking a therapist to deal with some of this in the next few weeks.....its taken me some time from everything else i had to deal with to be able to fit that appointment now into my schedule LOL :( I totally miss feeling hope, excitement, flirting with the opposite sex in dating.... - i think i will always feel like im hiding something until i disclose and then when i do tell....all the what-if's!!
I too do alot of organic and smoothies with spinach and kale, chia seeds, papaya, walnuts, greek yogurt etc etc! I was told the liver and kidney with Triumeq doesn't affect those? or am i being told wrong? I take a B12 mouth spray (whole food organic) and a multi vitamin (just started that one2 days ago) but i take them 6 hours after the Triumeq bc of absorption and binding issues per Dr. Hmmmm i wonder if I should add in a D and Calcium? Please explain the D as it relates to the virus, if you have a moment? I use alot of coconut oil too - sometimes in the smoothie, in my coffee, i cook with it, on my hair, sometimes my face and skin, etc etc.
You seem very well educated and i would love to continue to compare notes with you! Have you noticed any hairloss or thinning? How about with menstruation?
Thank you so much!!!!!
-
I'm glad my words can comfort you.
I think hetero women don't speak up much in regards to HIV, or let their status be known. Occasionally I will see women at my clinic that are much like myself, but it is just in passing. I go so infrequently, but would like to get to know them. I do have a friend who I met at my clinic (who I really need to catch up with .. she lives 4 hours away) who shared with me that she has hiv as well as her then 16 year old child. The mom had it for nearly 20 years (got it from a partner) and the girl since birth, and if she had not told me I would not have been able to tell. They look so healthy. Plus they began when the drugs were a little harsher. Healthy living does a lot for living well with this illness.
Plus my ex-boyfriend who eventually overdosed, he had it for 25 years or more, and many of those years he was doing drugs and drinking. He said that sometimes when he was using drugs, he would go long periods without even taking the HIV meds. Weird thing is that he never went below 600 or so tcells. He must've had 9 lives. So it depends on the persons genetics perhaps.
REgarding the Vitamin D, google HIV and Vitamin D and it will bring up articles regarding a study that was done.
Another person I know, takes the meds on 3 days then off a day, uses prescription Vitamin D, and maintains a tcell count at the high end of the spectrum. But thats just him. I tried for a couple months, and it did not work for me. Tcells went down.
I just learned the other day at this organic market I go to that Co-enzyme B Complex is best . Co enzyme makes it already metabolized so the liver does not break it down.
The liver and kidneys have to filter these HIV meds to my knowledge because they are the bodies filters. Perhaps he meant they do not put a heavy loaded burden on them. But I figure we have 40-50 years using these drugs so best to give our organs as much consideration as possible.
My hair thinned when my tcells got very low. I also got night sweats and oral candida. What happens when the tcells plummet is that the candida runs rampant and from my experience this contributes to hair loss. All that was reversed when I started the meds. Its only been 6 years and my viral load is undetectable and tcells average about 400. Everyone has a different "normal" when it comes to tcells. My deceased husband had tcells of about 700-800 and was undetectable but still had full blown non-hodgekins lymphoma. But again, every body is different and he was sickly since birth.
Oh, regarding dating, there was another guy who I met as friends at Whole Foods. He had a child as well. We became good friends, then the moment came, as most male female relationships happen when I could tell he was interested. I told him I was HIV + at that point, and he was no longer interested. LOL It was minorly disappointing simply because I was being rejected sort of. But I got over it quickly. We continued as friends and it was actually kind of nice to have a male friend without the possibility of it becoming a sexual relationship. It was like having a girlfriend with the lovely ways of a man. But then he became a jerk in other ways. Lol See because he had no interest sexually in me, he let his jerkiness show. So he would tell me how he was dating online but was not telling his partners that he had Herpes. He was just a selfish asshole. So I'm glad the HIV kept us apart. Our friendship finally ended because he was becoming advantageous monetarily.
Ironically, several years later, he bought some sandals from me on Ebay. I thought it funny that the name of the buyer was his name. Plus the buyer wanted to meet in person to save money on shipping. I thought it could definitely be his cheap ass.
I meet up with him and he wanted us and the kids to get together again. He looked so much thinner and sickly. He told me he developed kidney disease. I sympathized. But then, get this!, I could see that he was interested in me again. I guess he thought his sick ass and me would now be the perfect match. LOL after a few get togethers with our kids, his manipulative ways irritated me again. Then came termination of friendship for the second time. lol I thought the whole meeting again was funny. The Universe has a sense of humor.
Why we pick dysfunctional relationships is something I've been researching. Want to understand why I pick who I pick and vice versa. Look up special relationships versus holy relationships. Special relationships reenact the past; the other person is to atone for what has happened to you in the past by those who you perceived as hurting you; and also the hope that this time it will be remedied, and forgiven. But usually it just repeats over and over. Different actor, same script. And both parties are guilty. Until there is an awakening. I think the hiv experience is an invitation that for now, just to focus on myself, and not a partner. Its never been something I have been good at. I preferred being distracted with caregiving and becoming immersed in the other persons needs. Ugh. Sex is the only thing I miss. But if the relationship is not going well, that becomes less satisfying too.
A girlfriend of mine (not hiv+) is having similar relationship issues. Her therapist told her that "her picker is broken" and for now until she gets her picker figured out and operating correctly, its best to stay single. I thought that was so cute to describe the affinity towards dysfunctional relationships as having a broken "picker" . lol
Regarding food: a good book is Nourishing Traditions. Although it does promote a lot of meat eating. Bone broths are very healing. I think thats the book that I looked about fermentation and soaking as well. Nuts should be soaked because they contain phytic acid which is hard on the digestive system and if I remember correctly, an extra burden on the kidneys. Soaking and then drying them in a food dehydrator is easy. Raw vegetables also have phytic acid. Sauerkraut and the juice is awesome. Many a time it has eased my indigestion. The meds can mess with the stomach and cause indigestion. By the way, cashews are legumes so no need for soaking. I'm in the process of gaining weight. Would like to go from 113 to 125 or a healthy 130. Skinniness is not easy on the face past 40. So I have a container of cashews on my kitchen counter and I eat nut butters by the spoonfuls.
Food derived vitamins are best, not the synthetic ones. Again they are more easily digested.
It helps me writing this out to you. :-) Things really will be just fine. Its just the adjustment to a new way of living. honestly, I'm way healthier now than pre-hiv. I was so ignorant to nutrition and health back then. I even ate Mc Donalds back then! GROSS
lol
-
Hmmm my dr is thinking that the thinning of hair may have to do more with the stress i am/was carrying and all of the changes. I think my number since infection have been pretty good and I went UD within 7 weeks of starting meds.
Yikes on the meeting of that guy TWICE! LOL freaky!!!
I definitely have a broken picker - i think it's been broken a very long time UGH! I like that word "picker" hahahah
I went from almost 200 down to 160/165 in 4 months - its weird to see myself now. I wasn't eating from the stress of moving twice in 6 weeks, then husband leaving, then infected....people say i look really good but im so not used to it that i feel weird and i didn't lose it the traditional "gym" or "working out" way so i almost dont know what to say ....uh thanks? i was sick or sero? lol
I eat pretty healthy (fish, chicken, veggies, fruits) just dont have a huge appetite....i could go on 1 meal a day. Food just doesn't look as good as it used to. Im tired of eating the same things too - seems like its all running together plus i hate to cool :) But im not a soda or fast food person but love love love breads!!!
-
Hey Gurl,
Sounds like you are doing PDG !
I like your broken picker finger....I had one a couple times...Lol
You stay well ,Wade
-
The more you eat the more you will want to eat. I am the same way. I could go on one meal a day, but its really bad to do that long term, especially since our bodies have the extra stress of digesting the meds which are so strong.
We also need the extra weight in case we ever do get sick, to have some fat reserves.
Its probably the depression as well making you have less appetite, and the meds cause my appetite to decrease as well.
Get some nut butters and just have a couple of spoons of it between meals. And avocados are great and will improve hair texture.
Doctors and even aids denialists will blame either our side effects from the drugs on stress or the fact that we are succumbing to HIV without taking meds on stress. Well stress does play a part, it is true that the meds can have side effects and the virus (regardless if it was manufactured originally or not) will eventually overcome the body. Thats a whole other topic. ;-)
The fruit veggie smoothies every morning seem to be helping me a lot, feel better and gain a healthy appetite. I put organic tofu in them as well, to hopefully counter the lessening estrogen as I get older. Cilantro is really good too.
I think once our bodies are nourished and well, we can overcome the depression and get to work on fixing our pickers.
-
the virus (regardless if it was manufactured originally or not) will eventually overcome the body. Thats a whole other topic. ;-)
Hello chwhyoche, thanks for your inputs i really found your suggestions about nutrition helpful. However, it really disturbed me that you would make a statement something like this. I dont know what makes you have that opinion. would you like sharing some resource/links that can help us understand your viewpoint?
there are many newly diagnosed here including me and the OP who are still trying to come to terms with the diagnosis and deterrent statements like this only grow the irrational anxiety or fear in them.
Pittgirl, I got my first fill of Triumeq today. I will share the experience with you all very soon
-
samm2015 - thanks for your input - i am very very interested in hearing your experiences with the Triumeq.
I'm thinking that maybe chwhyoche meant that even though we might not die from the HIV per se....but that the virus will cause more weakness or susceptibility for other issues down the road. Not sure...but that was how i took it?
-
Sam, not trying to stress you. But rather encourage. I will clarify in a bit.
-
Sam, I totally understand how this is all new to you. But the statement is not a deterrent statement but rather a warning to adhere to the meds. There is so much information if one starts to really dig deep and research that it can scare a person into thinking it is better not to take the meds, and while some may go for awhile without, the effects of being HIV+ will eventually cause in severe decline in health. And its not due to stress. It really bothered me when some told me my AIDS symptoms were due to stress. I had been stressed before in my life and didn't develop night sweats, candida and wasting. It is a pretty well known fact that HIV by a admittance of Merck's Dr. Maurice Hilleman was intentionally put into vaccines in the 80's , but regardless how it came to be, the disease will cause one to become sick. And the meds are so much better now days. We are lucky not to lived in the times of AZT monotherapy!
I should have started earlier on the meds, but I didn't because I research too much and the information made me too paranoid and scared to take the meds.
I would hate for another to do this and get sick. You may have misunderstood my information to be deterrent but actually it is an encouragement.
I take my daily med and eat as nutritiously as possible. :-) Do that and everything will be fine.
-
It is a pretty well known fact that HIV by a admittance of Merck's Dr. Maurice Hilleman was intentionally put into vaccines in the 80's ,
that is untrue. >:(Hilleman discovered a simian virus SV40 in the polio vaccine in 1959. The polio vaccine has not been contaminated with sv40 since 1963. HIV has never contaminated any vaccine. HIV is a disease that has been traced back to Kinshasa African in the 1920s. At some point, thanks to global travel, HIV was carried to the states where it was introduced in the subgroups of homosexuals (through unprotected sex), hemophiliacs (through an unprotected blood supply at the time) and injection drug users.
http://www.skepticalraptor.com/skepticalraptorblog.php/polio-vaccines-cancer-debunking-myth/
-
I think once our bodies are nourished and well, we can overcome the depression and get to work on fixing our pickers.
LOL.....yes at some point i hope to fix my "picker" lol....wishing the same for you too :)
-
Hi I'm coming into the conversation late. Sorry about your diagnosis. I was infected as well by my now deceased husband. I have been positive since 1999. Didn't start taking meds til 2010. A body can go a time without meds, but from my experience, 9 years seems to be the average time that the HIV overcomes ones health. Who is to say I would have been better off or worse starting later or sooner. I do know the meds can have ill effects, but the benefits outweigh the risks. Every body is different.
9 years ago there were mixed opinions about starting meds at diagnosis.
There are no longer mixed opinions about this and all rich countries (that I am aware of) recommend treatment at diagnosis and pay for it.
-
I don't really understand either why someone would choose to date someone with HIV. Maybe they are ignorant. Or maybe they really care about the person. But still, its not something to be taken lightly.
One older man wanted to date me, and he did not know my status. Besides not being interested, I did not want to mislead him and told him my status. He did not care and still wanted to date me. I thought that strange.
Each person has their experience in their location and in their particular community.
Each person is entitled to their own feelings and actions about sero-discordant relationships.
I had gay relationships from the 1980's until now in NYC and Europe. And had experiences in these gay communities. Sero-Discordant relationships are not the norm but in my experience they are common enough and they are not considered strange. They were not even strange before the treatment existed. Now in Europe seri-discordant relationships can be quite banal because in some communities the fear has gone way down with all the knowledge about treatment and effectiveness and options such as PREP etc. etc. And heterosexual sero-discordant couples having babies the old fashioned way (unprotected sex - which is now "protected" sex because of the drugs).
-
chwhyoche
Could I encourage you to educate yourself a bit more and not post lies/misinformation and conspiracy theories that only make newbies nervous and perhaps confused.
No Swiss specialist has ever told me that the virus is going to win. I have been HIV+ for about 7 or 8 years and treated from a few months after infection. Every Swiss specialist I have seen has said to expect a normal lifespan and total control of my infection for life, or until there is a cure.
Secondly, believe what you want about conspiracy theories but they are just that.
And, they can be counterproductive to living well with HIV. Most HIV+ people have to empty the virus of all meaning and design, and use science and the medical establishment to treat it, which it does very well.
Thinking that the virus "means something" meant millions HIV+ people DIED in the past. Why treat something degenerates get? Why treat something that "doesn't exist". Why treat something that is a product of Big Pharma, or the CIA, or planned murder of africans by white people, or is simply "bad faith" or blah blah blah blah blah blah blah.
Thinking that it is warfare by the establishment, is counterproductive to getting people to deal with it as matter of factly as possible using experts to treat their infection.
If people do not trust the medical establishment, it is counter productive to their own health. I see that you agree with me on this point so why bring conspiracy theories into the mix when helping someone dealing with a diagnosis and living well with this infection?
-
mecch, you don't seem to understand me.
I take my meds. I trust they work now. AZT monotherapy did not for so many.
I accept there is corruption. There is profit in illness and disease. This does not mean that I think the meds do not work now. They are whats keeping me alive. Never did I say I would not live a normal life span. I'm in my 40's , so I reckon another 40 or 50 years is a reasonable lifespan.
There are conspiracy theories and conspiracy fact.
But my point is that although they may exist, that being HIV + will have long term negative health effects regardless how it originated, IF YOU DO NOT TAKE YOUR MEDS. Got it? I am encouraging not to get caught up in the debate if HIV is real or not and let that prevent you from taking medications, regardless of conspiracy facts. HIV will eventually kick your ass if you do not take your meds. So Take your meds.
-
Ok glad we are on the same page.
See, I thought you were claiming that Dr. Hilleman put HIV into vaccines and he never said anything like that. He said maybe infected monkeys were used in vaccine research before the HIV virus was known.
HIV would NOT survive in an everyday environment, outside the body in a "vaccine" - so I was worried you have this fear that HIV was spread through vaccine serum loaded with HIV. Ridiculous.
And I, and other posters here, thought you were saying treated people are going to get sick with HIV eventually no matter what.
So, glad to hear you didn't say that.
-
Hello chwhyoche,
I agree with what meech said, even though you didnt mean to say it that is how it somehow sounded, and we thought you are saying that inspite of taking meds virus is eventually going to come over.
you can understand how that can be perceived as deterrent.
but glad that you are pro treating virus as soon as possible :)
-
No. I didn't say that.
I personally don't believe the monkey theory.
I just wish someone would have spoken straight forward with me initially, instead of negating the corruption. Because if someone omits information from me a little, then I doubt everything they say. And being newly diagnosed, as you can imagine, once I started researching and finding conflicting information, I became frozen like a deer in the headlights, too scared to start the meds. And there will be folks who encourage HIV+s not to take the meds, but instead do natural therapies, but those do not work long term. Whatever comes with being HIV is too aggressive and will kill a person if they are not treated.
If treated, we can live long lives. Well, thats if you don't eat garbage and ingest other nasty stuff.
-
chwhyoche
I guess that you see some information is science and some "information" is bias- and lie-based argument. So its a false equivalence to say there is conflicting information. This is no "information" that says don't treat HIV, these days. That would be a lie-based argument. not info.
I am not so much telling you that as putting that on this forum in this thread.
There is still old information, of course, from old science, on the Internet. So it is important to look for dates on anything one reads.
chwhyoche
My personal politics is that we should take a critical eye to the excesses of the institutions of any social system - so yes, capitalism, and of course authoritarian countries too. We can be critical of Big Pharma, for example, about some things. We can distrust governments and their surgeon generals and their police and spy networks. Look what happened in South Africa with AIDS denialism - a mini genocide. Look what happened in many poor countries for over a decade when HIV treatment was available mostly only to rich countries.
So yes, a very critical eye about politics.
But that is apples and science is oranges. I realise that not so long ago, science could be corrupt but mostly in my lifetime, not so much. Institutions doing science or using science, yes, keep the critical eye.
So we don't throw out the science with the bathwater. That means we DO trust our doctors and we do trust science - with scientists working in a network of thousands, by research labs, universities, and pharma companies. They used science to get a drug that is proven to work - we can be critical about the institutions, but still benefit from the result of the science.
My personal choice and outlook in life is that I like experts to identify and if necessary fix my problems. I have to apply my smarts to make sure I am listening to an expert I can trust. But I can never have the expertise of the expert - that is his or her job - that is his or her experience over many years, and education. I have my expertise, others have theirs.
I have no medical expertise so I pick doctors I trust and let them figure out and treat my medical problems.
Everything I learned about HIV and its history was mostly for curiosity, psychology, and was not going to apply to the treatment of the virus - which is outside my area of expertise. Also always learning about the social contexts of being HIV+ in this world and how to deal and defend, etc.
Well that's my contribution to this thread. Take what is interesting and ignore the rest.
-
chwhyoche
chwhyoche
My personal politics is that we should take a critical eye to the excesses of the institutions of any social system - so yes, capitalism, and of course authoritarian countries too. We can be critical of Big Pharma, for example, about some things. We can distrust governments and their surgeon generals and their police and spy networks. Look what happened in South Africa with AIDS denialism - a mini genocide. Look what happened in many poor countries for over a decade when HIV treatment was available mostly only to rich countries.
So yes, a very critical eye about politics.
But that is apples and science is oranges. I realise that not so long ago, science could be corrupt but mostly in my lifetime, not so much. Institutions doing science or using science, yes, keep the critical eye.
.
This is where my distrust comes in....so thank you for addressing it so eloquently! It's like a double edged sword....I consider myself pretty smart but YES BUT i will never have my dr's education or years of understanding this virus nor will i be so educated to understand the people that made and researched the drugs to combat it.....BUT i also do not trust the Big Pharma and Government one stinkin bit..... but i think not taking the drugs scares me more than what the Big Pharm & Govnmt could be up to in all these meds. SIGH.....so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind......
-
so i take the BIG HONKIN PILL every morning
think positively! (woohoo for the pun!) :D
you could be taking 4 pills every 4 hrs every day or you could be taking 28 pills and liquid meds throughout the day, trying to match pills with eating, pills 2 hrs before food, and pills two hrs after food. :o
Oh, I'm not suggesting your pill isn't big, or isn't somewhat of a burden to take; but as with any tough situation that happens that you must live with all the rest of your life (disease, deaths, breakups, relocation, etc), you have to find your happy spot to make peace with the situation so you can move on with a happy, productive life. ;D
that's Leatherman's Motivational Message for the day ;) :D
-
This is where my distrust comes in....so thank you for addressing it so eloquently! It's like a double edged sword....I consider myself pretty smart but YES BUT i will never have my dr's education or years of understanding this virus nor will i be so educated to understand the people that made and researched the drugs to combat it.....BUT i also do not trust the Big Pharma and Government one stinkin bit..... but i think not taking the drugs scares me more than what the Big Pharm & Govnmt could be up to in all these meds. SIGH.....so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind......
ojo Hello my favorite gurl...now you are getting more stress by reading all this bs, who cares about if the virus was created, or if there is a consiperacy theory about goverment and pharma co., the fact is that we all have a virus, a virus who has been shown, I'm and example as many people here whom have been living taking meds for decades, that the onle thing tha suppresses de virus is that honkin med and others...like leatherman just said, in other words tho, you newbies are lucky to take just one pill a day, if it's to big, ask your doctor if you can cut it in half, you have even imagined, as leather mentioned, how difficult we LTS had it, and yes, we took toxic meds, we were guine pig so you guy now have eaiser, that what science does, someone has to suffer, even died so other can have better treatments...so, my dear gurl, I wish I had the words to help calm your anxiety, I'm rreally sorry you have to go through all this stress and uncertenty, I just can tell you, that, do not worry about you have something to worry about, nobody know what will be the long effects in your body by taking triquem, the only thing you HAVETO DO now, its taking the med or not taking it, you made the smart choice to take it, so relax and keep enjoying your kids, they feel when your are anxious and I'm sure they are suffering...if I may, stay away from this site, go beack to your normal lefe (at least for awhile), you'll see it will make you feel better (some other members have told me that)..best of lucks, lots of love for you and your kids, they are the ones you have to concentrate in, I think..your buddy tonny2...hugs ojo
PS 2 leatherman, do you remember the taste of norvir (ritonavir) liquid form?...the worse thing I have tasted in my life, thank God for science, don't you think so?
-
Well stress does play a part, it is true that the meds can have side effects and the virus (regardless if it was manufactured originally or not) will eventually overcome the body. Thats a whole other topic. ;-)
chwhyoche,
This is a very scary statement you made and I am glad you explained what you meant! I was dxd back in 2013 and went thru a difficult time when reading on the internet about it. Had I read this post two years ago, I would have freaked out... Back then I thought I only had few months to live. My ID doctor, which is a fantastic woman, basically told me to stop reading! She told me I was making myself sick. I had symptoms of every sickness in the world... Her words... 'you are not dying of AIDS... You are living with HIV and if you follow all instructions, you will be fine. I am. And I thank her for her advice and insight...
-
Pittgurl! "so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind." Great! Nice to hear you are doing well and lerning to live with this 'present' we received...
-
(http://s9.postimg.org/ov4r7zt63/LOL.jpg) (http://postimg.org/image/ov4r7zt63/)
-
This is where my distrust comes in....so thank you for addressing it so eloquently! It's like a double edged sword....I consider myself pretty smart but YES BUT i will never have my dr's education or years of understanding this virus nor will i be so educated to understand the people that made and researched the drugs to combat it.....BUT i also do not trust the Big Pharma and Government one stinkin bit..... but i think not taking the drugs scares me more than what the Big Pharm & Govnmt could be up to in all these meds. SIGH.....so i take the BIG HONKIN PILL every morning and pray for peace in my heart and mind......
High PittGurl. I haven't chimmed in ...in a while but I understand what you are saying about "Big Pharma" they basically control the entire planet and everybody on it and I don't take meds without letting my OCD take over and research the crap out of everything because I have had BiPolar Type 1, with mixed episodes, rapid-cycling, anxiety, severe Misophonia (Crippling annoyances to certain noises mostly people eating loudly) and mild OCD, my whole life and have always had to take a butt-load of medicine to achieve anything resembling stability. I'm currently living on a Federal Disability Pension due to having a 4 month long Manic episode which led to me being forced into an early retirement so now my full time job is achieving livable mental health which includes taking 4 years to get the med combo that works for me (Lamictal, Lisinopril, Ambien, Wellbutrin, Zyprexa, remeron) and in an effort to fall asleep I have about a 45 minute nightly routine which includes, melatonin, Valerian Root, mediation, mindfulness techniques and a bunch of other stuff. I've uploaded over 100 videos on my youtube channel explaining what I do every day to live with mania, depression and anxiety. Sorry I kind of got off track but the point I'm trying to make is even with all of that shit going on with me I still had anxiety about taking that Big Honkin Triumeq Pill for rest of my life manly due to the uncertainty of side effects and so far after taking for about 3 months I really don't have any for which I am so grateful. Okay so what I'm trying to say is even as bad as things may seem which this horrible diagnosis, and then getting additional mental health issues that are directly related to the HIV diagnosis and possible the meds to beat it there is always a Silver Lining to be found somewhere. I thank the Universe (I would thank God but I'm an Atheist) that I have 2 layers of very good health insurance to cover all of my treatments and meds for all of the shit I got going on. Obviously I would rather not be in this HIV & Bipolar Club but I am and still I understand things could be much much worse. We are alive, we are POZ and now we are stronger than every person we know. Not sure if any of my manic rambling made any sense or helped but just know that I'm sending Positive Energy in your direction. ;)
-
TriPolarTroy - thank you so much for your input!!! Everything you said makes sense to me - i feel like sometimes Im on the edge of where you are with the OCD, research, letting my mind take over and anxiety. It totally sucks and it takes a ton of energy to stay out of that mind cycle with or without meds. I did try the Zoloft but it's not working great for me - i had to go from the 50 mgs initially down to 25 last week. Was not feeling myself and couldn't sleep.
i'm trying to be thankful for everything and that takes alot too - im so jealous of "what used to be" and feeling like i had a life. Now i just feel like im passing time and worthless except to my kids because they have no choice LOL...they are too young to be on their own and their dads arent involved. I think i will always be too scared to tell someone that might be interested in me - i think i will end up sabotaging it to defer the potential rejection.
In an odd way, i do feel a tad bit stronger emotionally- but mentally and physically - it's a struggle everyday. I look around and hear the clock ticking - wondering what's next for me - what's the med going to do to me - what dont "they know" about it. And in the same breath, i know that us newcomers are so fortunate not to be told we can't do anything for you - take these 25 or so pills. It's like a mental battle all the time.
-
"I don't take meds without letting my OCD take over and research the crap out of everything because I have had BiPolar Type 1, with mixed episodes, rapid-cycling, anxiety, severe Misophonia (Crippling annoyances to certain noises mostly people eating loudly) and mild OCD"
Troy, I didn't realize there was a title for my condition "Misophonia". lol I have it bad. Some days I am so on edge, I will wear earplugs most of the day. My son will tell me "The dog isn't barking (a few houses down), you can take the earplugs out."
I'm pretty sure I have a Bipolar condition. I was always prone to melancholy, but now after several traumas in the last year, I can pretty much feel the "ride" . One day I will be feeling a high mood, and so lately it pretty much guarantees the next will be low with some crying.
I get a little weary of the medical establishment putting a diagnosis on every part of the human condition. We can't even react to severe conditions anymore without being diagnosed and prescribed something.
I'm OCD about some things, like I have ran out of our calcium supplement for the last week and a half, and I imagine our bones being leached of calcium as I type. lol IRRATIONAL, I know! .. maybe. lol
-
Misophonia is very real ... I've only known about it for about a year but I've struggled with it most of my life .... "Micro" Noises make me lose it ....I mean like I have my finger on the mute button and as soon as I hear crunching, kissing, or any exaggerated sounds especially eating noises. I'm going to post a video talking about it here in the next couple of days
-
Troy, I've got it pretty bad too. I don't mind things I can control, but if its some noise that has a pattern I cannot predict or control, it drives me crazy. Like the dog 5 houses down, or chewing, slurping, sniffing, chairs squeaking, ... :o
I keep it to myself unless its just beyond normal. Because I know I'm not quite normal in this regard.
-
I am interested to see your video. Let me know when it posts.
-
I'll send you the link as soon as I have it up
-
Misophonia is very real ... I've only known about it for about a year but I've struggled with it most of my life .... "Micro" Noises make me lose it ....I mean like I have my finger on the mute button and as soon as I hear crunching, kissing, or any exaggerated sounds especially eating noises. I'm going to post a video talking about it here in the next couple of days
lolz
I almost replied to this the other day. My two younger brothers and I have this disorder. They didn't know the name of this until I told them a few yrs ago; but we've all talked about this problem for years - with people thinking we're crazy for being "so sensitive to a few little noises".
I seem to have a harder problem with misophonia than my bros. It's interesting to see that we all react a little differently (mainly instant irritation/anger) with slightly different trigger noises (for one it's the smacking, for me it's the slurping and gulping sounds, for the other it's the clicking or crunching sounds.) Our mom may be losing her hearing; but she freaks out about the smallest nail-biting or nail-clipping sounds. She also has tinnitus issues which is associated frequently with misophonia (hey! while many people might not have heard about this disorder, spellcheck knew when I mistyped it LOL), so perhaps it's hereditary.
I compensate with more noise. At night, when every sound in the quiet house seems as loud as a political rally and twice as irritating, I either play music softly or a use a white noise machine. (although the volume has to be exactly right or even these sounds will grate on my nerves) During the day, if my mp3 player headphones aren't jammed in my ears, then the TV is on (like all the time on!) Quietness (or perceived "quietness") drives me crazy/angry!
https://en.wikipedia.org/wiki/Misophonia
-
Hi everyone - quick update....see signature below....I called into the clinic and the nurse gave me an update. My dr appt is Wednesday and of course I will bring it up....but im concerned :(
so labs came back VL undetectable (since October) but CD4 dropped again??
makes me sad :( why would that happen? She said its only 42 points but in total it's almost 100 over 4 months....
-
perhaps you need to poke around some more of this website. I say that because I would have hoped by now you would have read some of the many entries about cd4s. so here's a quick primer:
1. cd4s can change by 100 pts within a day!
2. they are higher in the later afternoon (4p-6p) and lower in the morning hrs (10a-1p)
3. you need to judge your cd4s by the trend of at least 3 tests over a 6wk to 6 mo period. it never matters what one single test says; but what the trend is.
4. the "normal" range is between 400 to 1200. (your average of 522+ is certainly well in the normal range)
5. the quality of your immune system is based on your genetics, and there's little to nothing you can do to make it any better. Of course, improved basic health (exercise, healthier diet, etc) can help a person be healthier so their immune system is working at it's prime (that's quality vs quantity); but there's no med or magic trick to use to raise your cd4 level. As a PLWH about all you can do is to stay adherent to HAART to halt the HIV, so your immune system can work.
6. the cd4 count is simply a number representing the quantity of cd4s - not the quality of those cd4 cells. Some people with 300 cd4s are very healthy while others with cd4s over 1000 have multiple health issues. Usually more cd4s does mean a person has a more robust immune system; but not necessarily. (so quality is better although we'd all love to have a great quantity - even if a higher cd4 number doesn't really mean that we are "healthy")
Let's look at your #'s
8-2-15 CD4 286
9-21-15 CD4=570
(omg! in one month your cd4s doubled! plus you basically became UD)
10-27-15 CD4=522
1-28-16 CD4=479
your cd4 trend was a quick up and then leveled out. Technically, because of the 100 pt fluctuation within a one day, you have had NO realistic change in your cd4 counts since sept. yes, in this case 479 is equal to 570, especially with a mid-range test there in the middle. Graph it out and see the almost straight line. ;)
7. finally, cd4 counts are becoming less of a measurement anyway, quite simply because, as I explained above, the cd4 count doesn't show the "quality" ("hardworkingness", if that's a word LOL) of your immune system. Once a person gets over 200, and sustains UD, the CDC is recommending to check cd4s once a year because this count doesn't tell the doctor much clinically about your health.
Keep taking your meds because everything shows to be working incredibly well! :D
-
haha right after I posted that i did a search in the tool bar and saw how much the CD4 #'s fluctuated for everyone :) I spent a good 2 hours reading posts
Question - why are they lower in the morning? All of my blood tests were done in the morning....
You are so smart and I thank you so very much for putting time and effort into my post....still a newbie here and definitely am so very thankful for you & the others.
-
Question - why are they lower in the morning?
um, just because, I guess. LOL Your cd4 count is in flux all day long
did you know that the first 45 minutes after you exercise, your cd4s drop! it's not till nearly an hour later that you'll get a boost in the count after your time at Planet Fitness or wherever. Smoking a cigarette can actually give you a temporary increase of 50-ish points - before dropping down further than it went up.
(did you know that less than 10 yrs ago, >500 was undetectable?!?! And we were all hanging in there fairly well too. ;) but then as tests got more accurate the level considered to be undetectable dropped to 250, 100, 75, 50, 40, 20. Now they can measure down to 2 but the cost of that test vs. any "benefits" to diagnosing and treating the patient is negligible (meaning big cost but little help to the patient))
and that's why it's about the trend over time. A cd4 test is simply a snapshot of the moment when they took blood from you. If you had it taken every hour, you'd see that number jumping all over the place. LOL
-
LOL gotcha! Thank you - can you imagine for something that is so anxious like me and borderline (self diagnosed) OCD hahah (i dont do handwashing or stuff like that - more just like things the way I like things neat and orderly) to see numbers jumping around like that every hour!?!?!? hhahahhaa!
-
Might be a good idea to stop self-diagnosing psychological conditions, such as OCD. Of if you must, maybe cut out the "hahahaha", cause its not funny haha to people who have OCD, including the "hand washing or stuff like that." It can be hell
-
mecch - am so sorry - didn't mean it like that. I think the dr has somewhat diagnosed me with a slight case of OCD but for years has more focused on the anxiety and panic attacks but i think why she prescribed Zoloft is for the OCD too without really touching on it bc hearing another diagnosis would just drive me bonkers.
For me it's more mentally than actually physically. I fight hard to stop the physical OCD - i used to not be able to leave the house without dishwasher being empty, all beds made, entire house picked up, all electronics off or closed, needed to clean the bathrooms, all blankets folded with the fold facing out and the open parts against the wall.
I remember the day about a year ago that my therapist instructed me write all of my OCD tendencies on pieces of paper and rip them up them drop them on the floor in my house. I could NOT do it. I tried but it bothered me in my core to see them - as i was instructed to leave them on the floor. :(
Im trying very hard to now just be OK with not folding up all the blankets and not making my bed - its hard bc I am a perfectionist and with kids - its even harder!
I apologize - i wasn't making fun at all - i guess bc my kids tell me all the time to stop being like this it was easier to poke fun at myself - please accept my apologies
-
Thats sweet of you to say. Look it seems like you are OCD and shrinks have even explored that with you, so why not just be straight about that, and not bracket it with "hahaha" and "self-diagnosis". That's all. Maybe you do that because you are nervous or want to minimise it or distance yourself from it, but for some reason it seemed off-putting. I wish you well.
-
mecch - thank you; yes am a bit nervous i think - i wish you well too :)
-
Hi everyone, haven't updated for a while. Life's been hard....
my 17 year old daughter has moved out of the house bc she doesn't want rules. She threatened suicide for the 4th time now and was inpatient, now has moved out to her grandmothers house on her dads side. This side of her family hasn't been in her life by their choice for over 15 years. Maybe her knowing about my status and my financial collapse this year was too much for her to handle....
My 12 year old son is great and Im trying to focus more on him - he doesn't know about my DX.
I got in touch with my HS sweetheart and reconnected and our relationship took off quickly (prob too quickly) - we both were single (still married by law but single in terms of being with the other spouse for years). I told him about my status - my first disclosure to someone i was interested in- i even pushed him away and told me to just walk away....life would be easier for him to just not have to deal with this. He told me he has Type 1 Diabetes (and wasn't doing a good managing it- went from 51 to over 300 some days!) However, he accepted my DX and went to dr appts, got tested himself, etc. Unfortunately, our relationship has ended bc of other issues (found out he had past drug use, dealing, and even dabbling in the masseuse happy ending facilitation.) All of which i dont need in my life. :( I felt like I was losing my handle on my health while taking care of him - i tend to overcare and enable :(
In the past year my dad was diagnosed with ALS, we've moved 2x, daughter moving out, my DX, husband left again, boyfriend came and went, financial collapse, etc. it's been so much.....
All of this has caused so much stress on me that i haven't been feeling great the past 2 weeks. I know stress can take a huge toll on us. I'm scared that maybe the stress has caused me so much physically that meds aren't working or maybe just that im so exhausted that im opening myself up to other illnesses
That being said - i have not missed 1 pill within a 2.5 hour window every single day. I know when i go back to the dr next month she is probably going to want me to get on something for anxiety though.
-
Sounds rough and sorry to hear you challenges but you are hanging in there! Good stuff!
Great that you did your first 'disclosure' too and it went fairly well (the disclosure part at least). I think we all assume people will run for the hills the moment they know
Aside from that, I must admit, I'm tempted to facilitate myself some masseuse happy endings though... sounds fun :)
-
Sorry to hear about the hard times you have been going though but I did want to comment that it's great to hear that despite all of this you have been adherent with regards to the meds. I hope things start settling down and looking up for you soon.
Jim
-
Welcome and sorry about your DX. I won't repeat what so many others have shared with you, but know that in the US the FDA requires warnings even if one person had a side effect. It is good to be aware of the possibilities but trust your doctor.
I struggled with depression and anxiety at first and some days still have fleeting thoughts but thanks to this forum and a couple other sites I've come to be more confident in my future.
-
Hey PittGurl so so sorry that you got so much shit going on .... we kinda started in this forum around the same time so I feel connected but what I wanted to say is that I have like 145 videos uploaded to my youtube channel dedicated to my daily battle with Bipolar Disorder in addition to having actual footage of me being manic or depressed I also have videos of me talking about the things that I do in an effort to achieve and maintain some level of stability. Not sure if you have a diagnosis for your son yet but I thought maybe some of my vids may help. T
Troy's Bipolar World
https://www.youtube.com/playlist?list=PLgKCrS5-teFAmVayWKtRULicGrkzHIKaQ (https://www.youtube.com/playlist?list=PLgKCrS5-teFAmVayWKtRULicGrkzHIKaQ)
-
thanks Troy- i will def check it out - it's my daughter - and no real diagnosis just Gen Anxiety.....im tired of being so tired of being tired.....if that makes sense
-
thanks Troy- i will def check it out - it's my daughter - and no real diagnosis just Gen Anxiety.....im tired of being so tired of being tired.....if that makes sense
Makes perfect sense actually :-)
-
Just got my labs back! 8 months on Triumeq
4-27-16 CD4=580; VL=UD; 32% almost 8 months on Triumeq
-
Nice that's truly excellent results. :-)
-
OJO hELLO MY DEAR AND FAVORITE GURL, i COULDN'T BE HAPPIER FOR YOU, AND ENVIOUS, LOL, YOU CD% IS BETTER THAN MINE, UGH!...i LIKE PEOPLE WHO ARE FIGHTERS, THAT'S WHY i INVEST MY TIME IN SUPPORTING AND SENDING pmS, TO SHARE EXPERIENCIES AND TRYING TO GIVE A BIT OF HOPE, TO OUR NEWBIES...i'M GLAD YOU ARE HAPPY WITH YOUR RESULTS, NOW, i'M READY FOR MY BEER, CHEERS AND HUGS MY FAVORITE GURL OJO
-
Thanks Jim and Tonny2! :) I'm kinda shakey today LOL....i dont know if too much coffee or just the relief and letdown of worry. I dont have to go back to Dr. until August - seems long but that is only 3 months away. Ironic that my appt will be on the exact day I was DX.
-
Just got my labs back! 8 months on Triumeq
Excellent! ;D
any side effects? looking back now can you see why we told you were overly worrying about things? ;) :-*
seems long but that is only 3 months away.
just think, with numbers like that after 8 months, that in another 16 months (which could mean as few as just 2 more labs), if you remain UD (and that's easy-peasy by just remaining adherent to your meds) then you could go without ever checking your cd4s again and probably only having a viral load test done once a year! That should certainly help alleviate your worries a bunch. ;D
the current guidelines are:
After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months
After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional
https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)
-
LOL Ok Most Respected Leatherman :) Yes, i do see now - still doesn't qualm my long term fears - however, id rather be ALIVE!
I take my meds faithfully with 1 hour before or after 9am since DAY ONE :) i have 2 alarms on my phone - one regular one and the other through an app that i can show my dr at any given moment my 100% adherence. Also if i add in another med (like Ativan as needed or whatever) i can track that too.
I have been hearing from my Dr that the % is becoming more important than the CD4 count. I was worried that in Jan (see below) my CD4 dropped that meds werent working....however the % was up so the dr said not to worry...we dont look at CD4 as much as the %...... Can you explain that more? I dont quite get that.
-
I have been hearing from my Dr that the % is becoming more important than the CD4 count.
knowing the % was really mainly a factor back in the days when we had to wait to 350 to start meds. So yes your doctor may have cared about the percentage here at the very first to take a more narrow view of how well your meds were working. However, the percentage will never be important again after the first year.
In 30 yrs, I've only asked about my percentage once because that's never a number I or my 3 ID doctors have ever needed to know to treat me. Trust me, with your excellent cd4 count and UD, your percentage means absolutely nothing to you now and will mean nothing in the future. After year one, all you need to know is a once a year viral load and another cd4 count. after year two, all you'll ever need is a yearly viral load
edited to add: and that is info from the CDC ;) whose guidelines your doctor is using to treat you.
-
I have been hearing from my Dr that the % is becoming more important than the CD4 count. I was worried that in Jan (see below) my CD4 dropped that meds werent working....however the % was up so the dr said not to worry...we dont look at CD4 as much as the %...... Can you explain that more? I dont quite get that.
The CD4% is more stable than the absolute CD4 count. Once stable on meds and in a decent CD4 range (as you are), the CD4% only really becomes useful if a CD4 count dips, as the % will show the doctor if the dip is likely to be a real dip or just a transient change in your count. Thats pretty much why it was used when your CD4 dropped and now that CD4 counts are likely to be less frequent, will only help inform the doctor if any follow up will be required under that scenario in future counts.
As said though, now you are back into the 'normal' range and doing well, focusing on CD4 will (almost) be a thing of the past. I saw recently that Dr Gallant said that we are now 'living in a post CD4 era', which says it all really.
Overall, you are doing great :)
-
Thanks to both Leatherman and CaveyUK!
-
:-[ i love this entire post. It is helping me to deal with worries since the recent DX of being hiv positive in April. I'm yet to make an official post introducing myself etc but I'm getting there soon
-
:-[ i love this entire post. It is helping me to deal with worries since the recent DX of being hiv positive in April. I'm yet to make an official post introducing myself etc but I'm getting there soon
ojo Good for you...welcome and keep us posted...I'm glad you found us and happy to hear your positive attitude, no pun intended...hugs ojo
-
ojo Good for you...welcome and keep us posted...I'm glad you found us and happy to hear your positive attitude, no pun intended...hugs ojo
You guys are my online family. I don't think I will ever let my family find out about my status! I want to know I have this virus under control ASAP and I live my life the healthy way that is mostly eat the right kind of food, rest, exercise and take care of my mental health. You guys provide so much strength and encouragement to persons who just DX their status. Keep it up!
Also my partner and very close friends are keeping me mentally strong as well
-
hiv_rizzy - when you are ready we are here....i dont think any of us have ever hoped to be here but we are ...so we are all family no matter gender pref, religious, political etc. We all have the same thread running through us with this DX. Here you will find education, love, opinions, great discussions, and forever friends. When you are ready....we are here :)
-
You guys are my online family. I don't think I will ever let my family find out about my status! I want to know I have this virus under control ASAP and I live my life the healthy way that is mostly eat the right kind of food, rest, exercise and take care of my mental health. You guys provide so much strength and encouragement to persons who just DX their status. Keep it up!
Also my partner and very close friends are keeping me mentally strong as well
ojo I'm glad you consider us your family...like my favorite gurl said (Pittgurl), you will learn and will find support from lots of good people on here...you can vent or rant, we'll listen to you and try to keep you calm and cheer you up, we all know that after a dx everything looks very grim, but, thankfully, hiv is considered a cronic desease, so, let us know when you are ready to start your own thread and introduce yourself to the club, so everybody can know your story and can keep your progress in such thread...again, welcome and happy you are not alone dealing with your dx, we are here too for you...best of luck, ah!, wgen you get your blood work results, you want to know, cd4, cd4% and VL...discuss treatment options, you might want to make a list of all the questions you may have for your doc, go to lesson on the top of this page and start learning more about the bug...hugs ojo
-
really down tonight....i just feel like im hiding something from everyone and if my friends or family knew they would be disgusted by me. I have only told 15 people (closest friends and family) but those people just a hair outside my circle - no way! I live in too small of a town and can't risk my kids being made fun of or the hatred that might come with the stigma. So tonight I just feel like crap....like i crave so bad inside of me to go back to 1 year ago...when i wasn't infected, when i was whole and wish i could make a better choice. No one is home and I think ive been crying straight for almost 2 hours, drinking wine, eating dark chocolate and just yelling out loud I DONT WANT THIS! but nothing is going to change this...nothing at all....and yes yes yes... I KNOW take meds, all will be ok....and i do faithfully. But Im so bitter, so angry that this man who knew (whether it was my husband or the man afterwards) took my life into their hands and had such lack of care, lack of concern for me, to infect me. It's such a deep deep painful hurt that it almost chokes my breath. Im sorry to vent and dump but my pain is killing me tonight so much that I wish it would all end.
-
really down tonight....i just feel like im hiding something from everyone and if my friends or family knew they would be disgusted by me. I have only told 15 people (closest friends and family) but those people just a hair outside my circle - no way! I live in too small of a town and can't risk my kids being made fun of or the hatred that might come with the stigma. So tonight I just feel like crap....like i crave so bad inside of me to go back to 1 year ago...when i wasn't infected, when i was whole and wish i could make a better choice. No one is home and I think ive been crying straight for almost 2 hours, drinking wine, eating dark chocolate and just yelling out loud I DONT WANT THIS! but nothing is going to change this...nothing at all....and yes yes yes... I KNOW take meds, all will be ok....and i do faithfully. But Im so bitter, so angry that this man who knew (whether it was my husband or the man afterwards) took my life into their hands and had such lack of care, lack of concern for me, to infect me. It's such a deep deep painful hurt that it almost chokes my breath. Im sorry to vent and dump but my pain is killing me tonight so much that I wish it would all end.
PittGurl be strong please!! We are all here for you and want to be around for a long time to say to the world! Look we have survive so long and we have overcome our sorrows. Please don't give up. I havent started meds as yet. I angry at whoever gave me this virus but ofc Im partially to be blamed to not becareful, Im losing an aunt who has been a mother to me from childhood to colon cancer as well. I'm dealing with some many worries about the future, etc etc. Please be optimistic and feel free to vent to us :'( :'( :'( :'( hold strong PittGurl
-
ojo Hello my favorite Pittgurl...I wish I knew where you live so I could stop by and give you a big hug...I'm sorry you are going through this situation once again, all I can tell you is that it will get better, just hang in there...hugs ojo
-
Hey Pittgurl,
You ARE still whole and the same person you were before, you just
needed a good rant that's all.
Sure things look better this morning except for the hang over... ::)
Hugs, Wade
-
WOW, almost a month since I've posted here on my thread. Today I took the time and reread my entire thread......I can honestly say life is pretty good right now and alot of it has to do with the support i received here from Day 1. I'm still looking for side effects....long term, short term but not as much...not as consumed
My oldest daughter graduated Boot Camp this past month. My middle daughter graduated HS and is leaving for college next month and my son is enjoying playing on his soccer teams (right now on break and at overnight camp for a week)
I'm back to running my business and that was probably my biggest accomplishment so far. I'm taking my BIG HONKIN PILL every day within 2 hours of my alarm. No side effects still, hair loss has stopped and my hair filled in (must have been the stress!)
Still single, but have an interest in someone that if everything was "perfect" would be someone i would want in my life forever. But his situation is a little complicated and Im torn inside on how much to let him in to the deep parts of my heart. I already disclosed and expected him to say "nice to meet ya buhbye!" - sidenote......My personal take on disclosure is how i would want it. I felt a huge connection when we remet (dated him in HS) and I want to give a person that is interested in me first chance to walk away and not invest time if they can't see past or care enough to get educated about my DX.
We've been spending alot of time together text and in person. He got tested himself for all the above gamma of STD/HIV test. I'm scared bc I like him almost too much. He's incredibly smart, driven, sexy, a great dad to his kids, business owner, caring, a fabulous kisser, beautiful smile and great communicator. I could talk to him all day and that is rare for me! He has goals and things he wants in life for himself. I feel like in my heart he could be my next 40 years..... Guess time will tell....just dont know if i can go thru another heartbreak by opening myself up completely to someone again. I'm trying to hold on to pieces of my heart to keep safe.
And then there is this..... I still dont know who it was that gave this wonderful gift to me - ex-husband or rebound....I still get pretty upset and down about that part. Trying to move past it but it still gets to me.
Questions....i thought i knew the answer to these but just want to make sure....
1-are pregnant women tested or newborn babies tested for this? (ex-husband has a new family)
2-are pro sports players tested? (rebound guy)
3-are international students tested before they come into the country? (rebound guy)
Im trying to narrow it down as much as i can between these 2.
-
ojo Hello my favorite Pittgurl...it's no nice to hear from you and know that you are doing great, you see, you've done a good job as a mother, daughters finishing school, especially, you have done even better with your son, letting him play the most beautiful sport of the world, REAL FOOTBALL, lol, I'm sure he followed the Copa America, Colombia did better than Mexico, ugh!!!...happy for you, too many "enamorados", I envy you, lol...about your questions, I will let the smart guys answer them for you, I just wanted to say hi and I'm happy and jelous, lol...hugs ojo
-
Hey Pittgurl ...... just wanted to say hey :)
-
Hey TriPolarTroy :) My bday today.... :) Good day to be alive LOL
-
Happy BIRTHDAY!! Isn't crazy that the reason I came back to this forum today was to see how you were doing :)
-
haha Very crazy!! Thank you so much!!! Its not such a big deal anymore..... LOL
-
Question....so i know there is no fail-safe way to not transmit except condom or abstinence. Been reading that PARTNER study..... Ive been UD since Oct of last year. 100% adherence to my meds (ya'll know how committed i am to meds!)
Is anyone out there with a male negative and a female positive that doesn't use condoms and hasn't infected the other one? Id like to hear from a real person instead of a study. My BF wants to "get that feeling" back but i dont know how comfortable I am with that. I worry as it is....not saying I will allow it but just would like to be more educated and also hear from real couples.
-
Question....so i know there is no fail-safe way to not transmit except condom or abstinence. Been reading that PARTNER study..... Ive been UD since Oct of last year. 100% adherence to my meds (ya'll know how committed i am to meds!)
Is anyone out there with a male negative and a female positive that doesn't use condoms and hasn't infected the other one? Id like to hear from a real person instead of a study. My BF wants to "get that feeling" back but i dont know how comfortable I am with that. I worry as it is....not saying I will allow it but just would like to be more educated and also hear from real couples.
I've been researching the same shit and there doesn't seem to be even one documented case of transmission from someone who is med compliant but nobody wants to be the one who tells people "yeaaaaah fuck it just start smashing ass without protection" but it seems that with you being UD and taking your meds there has got to be like close to a .001% chance of you infecting him ..... I'm no expert this is just based on all the data and studies I've been reading and videos I've been watching on UD people transmitting it.
-
It's not the Anniversary that I had hoped for all my life....but it is one that I am alive. Soooooo HAPPY 1 YEAR DX to me today! LOL
Had my 3 month check today on EXACT date LOL
Amazed at results - not sure how CD4 bounced this high (see below trend) but i will take it!
7-28-16 CD4=991; VL=UD; 38% almost 1 year on Triumeq
Things I have learned this year:
- real friends
- life is short dont take it for granted
- dont judge others
- relationships are important
- not everyone will accept you
- life goes on even if minute by minute (that first month you guys were my lifeline)
- my children are my strength
I am so thankful for this board and everyone who helped me thru those first 24 hours until today. I honestly would have taken my life had it not been for you check in on me...a HUGE hug and thank you to everyone. I keep this thread going as my journal :)
Besitos y abrasos
-
Happy birthday!!
-
Thanks Zach!
-
ojo. Hello my favorite girl, I do remember those days, I am glad you were doing fine, congratulations!!! ojo
Besos y abrazos de regreso
-
Oooooi! Mi favorito Tonny2! Miss you buddy!! How are the eyes?
-
Oooooi! Mi favorito Tonny2! Miss you buddy!! How are the eyes?
ojo. My favorite girl I am in Mexico on vacation I will get back to you soon kisses my eyes getting worse. Ojo
-
Congrtttt :)
-
Thank you Newtolife.
On a sep note - need you guys input. Had my tubes tied 2 days ago. Sar my ID dr 1 day ago (got Meningitis vaccine) Was fine that day and yesterday. Woke up last night 4am with itching and hives on my back. By the time I got up to my daughters room my top lip was swollen and i felt like it was flapping. It wasn't too noticeable but felt very weird. Called 911- after vitals were all good and discussing it with ENT they said takes a shower, then take some benadryl and see if it goes away and thats what ER would do too.
So I took 2 kids doses (Meds affect me heavily) and fell asleep. Just woke up about an hour ago and no hives or itching. However, my top lip is STILL swollen and feels like its protruding. It's only slightly noticeable. I called both ID dr and surgeon and am waiting for a call back.
Anyone ever experience this? I dont know if it is from the tubing down my throat (my glands are a bit swollen too) from surgery or what. I dont have any allergies.
-
Been MIA - had some hellish experience with a guy i started dating.....found out he was MARRIED :(
Anyways, it's been a year now since DX. I got pretty brave the other day and decided to ask the 2 people that could have transmitted this to me about their status in a round about way. First assuming they had it and then questioning. I'm very perplexed. Both men are negative and I've asked now for actual proof. Which brings me to a dilemma!
I tested negative in January 6 months prior to DX. Before that was not sexually active for 3 years. And then got really sick in June of last year - was DX with epstein barr, then viral meningitis and then this. Is there ANY chance at all this could be wrong? I mean i dont think so since i had a VL and also had Western Blot....experts? Im really stunned how there was only 2 possible people and neither (so far since i dont have documentation yet) are saying they are negative.
-
Hi
Sorry to hear about the guy and him being married.
Not much to say about that, other than it really sucks and I hope you find someone who is great for you and makes you happy.
I tested negative in January 6 months prior to DX. Before that was not sexually active for 3 years. And then got really sick in June of last year - was DX with epstein barr, then viral meningitis and then this. Is there ANY chance at all this could be wrong? I mean i dont think so since i had a VL and also had Western Blot....experts?
You are living with HIV and if you had any doubt as you already stated there is a sequence of tests to confirm positive results. You know yourself that you had a detectable VL that you are suppressing with treatment at the moment. Don't let any "how's and what if's" or "who" cloud your thoughts on this point, ;)
Its simple you are living with HIV, now I am not sure i understand why you are focused the "who". I would not let it take up too much of your time or energy as it's the past now and you need to keep moving forward.
Take it easy.
Jim
-
OJO HELLO MY FAVORITE GURL, I GUESS THAT'S PART OF THE DATING GAME, YOU HAVE TO PICK BETTER, THIS IS THE SECOND ONE, RIGHT?, I'M SORRY, MAYBE YOU AND I CAN HOOK UP AND EAT SOME CREPAS COLOMBIANAS, HAHAHAH.
MY DEAR AND FAVORITE GURL, IT IS WHAT IT IS (ES LO QUE HAY), FOCUS IN THE PRESENT, I DON'T THINK THESE GUYS WILL SHOW YOU ANYTHING...KEEP TRYING AND IF YOU FIND A NEW GUY, ASK HIM IF HE HAS A FRIEND FOR ME, VA?...HUGS Y BESOS OJO
-
Anyways, it's been a year now since DX. I got pretty brave the other day and decided to ask the 2 people that could have transmitted this to me about their status in a round about way. First assuming they had it and then questioning. I'm very perplexed. Both men are negative and I've asked now for actual proof. Which brings me to a dilemma!
I think there is little point for you to pursue this investigation. It brings you no comfort or benefit, nor does it help the guys you are quizzing about it. If they are negative then it just makes you sound a bit crazy to demand documentary evidence, and if they are positive but either don't know or are hiding it, then thats up to them. It really does serve no purpose whatsoever in my opinion aside from fuelling your anxiety.
I tested negative in January 6 months prior to DX. Before that was not sexually active for 3 years. And then got really sick in June of last year - was DX with epstein barr, then viral meningitis and then this. Is there ANY chance at all this could be wrong? I mean i dont think so since i had a VL and also had Western Blot....experts? Im really stunned how there was only 2 possible people and neither (so far since i dont have documentation yet) are saying they are negative.
You could have had the virus for many years, which unless these 2 guys are the only people you have ever slept with, may broaden the possible transmission routes. Again, it's really not worth spending any time worrying about.
If you have had a confirmatory HIV test and had a detectable Viral Load then you have the virus. It's done, and no amount of tracking back or trying to work out a source will change that. You are on effective meds and doing extremely well now, so try to look forward rather than back. I know that sounds a bit preachy but I honestly think it will help you psychologically moving forward.
You have every opportunity to do everything you would have done if you didn't have the virus. So grab hold of the possibilities and enjoy life :)
-
Thanks for the replies from before. Im not going to address them bc it's just the person i am and i want to know. Maybe i will never know and maybe i will. And i do know i only had this virus when it was found bc i have previous tests that show negative. So i did not have it for years.
In any case, a new struggle. How do you combat feeling completely alone? I like in such a rural place that ive told hardly anyone in my circle. Im also hetero and feel like there is no one like me struggling through this. My desire to even come out of my house is dwindling. The past 2 guys I met just shot my self esteem to pieces. But i crave to have love, a relationship, someone to be there for me and share life with. I feel like everyone got what they want but me. What is so bad about me?
-
OJO HELLO MY FAVORITE GURL, I'M SORRY ABOUT WHAT YOU ARE FEELING RIGHT NOW, IF IT MAKES YOU FEEL BETTER, I'VE BEEN WITHOUT A RELATIONSHIP FOR 18 YEARS, NO BECAUSE OF HIV, BUT BECAUSE OF MY VISION PROBLEMS, DO NOT GET ME WRONG, I DO FEEL LONELY SOMETIMES, BUT I SEE WHAT I DO HAVE NOW, FAMILY WHO LOVES ME, AND THEN, I FORGET ABOUT MY LONELINESS...I THINK YOU DON'T HAVE TO TELL EVERYBODY YOU ARE HIV POSITIVE, JUST THE PERSON YOU ARE INTERESTED ABOUT, AND DONT WANT YOU TO INTRODUCE YOURSELF TO ANYONE AS "HI, I'M PITTGGURL, BY THE WAY, I'M HIV POSITIVE", NOBODY DOES THAT, YOU HAVE TO GET TO KNOW THE GUY, YOU HAVE TO CHOOSE WELL, MAYBE THE THIRD ONE IS THE CHARM, YOU ALREADY BROKE THE STIGMA, SELF STIGMA THAT YOU ARE POSITIVE...I DON'T UNDERSTAN WHY YOUR NEIGHBORS HAVE TO KNOW IF YOU HAVE DIABETES, OR SMOKE POT, OR THAT YOU HAVE STINKY FEETS, LOL, MAYBE THOSE TWO GUYS YOU MET DIDN'T LIKE YOUR STINKY FEET, LOL, SERIOUSLY, GO LIVE YOUR LIFE, YOU HAVE TO CHILDREN TO LIVE FOR, THEY GIVE YOU LOVE, I KNOW IT;S DIFFERENT KIND OF LOVE, BUT IT IS UNCONDICINAL LOVE...IF YOU KKNEW THAT I LOST MY PARTNER BECAUSE I CHOSE FAMILY OVER HIM, LONG STORY, BUT I'M SURE MY EX AND I WOULD STILL BE TOGETHER IF I WOULDN'T DONE THE CHOOSING THING...BE PATIENT, AND IF YOU FEEL ALONE, DO SOMETHIN ABOUT IT, YOU ARE A HEALTHY LADY, YOU CAN SEE, WALK, DRIVE, ETC, ETC, YOU JUST NEED A BIT MORE OF DETERMINATION...JUST A THOUGHT...HUGS OJO
PS; I'M MAD AT YOU BECAUSE I POSTED MY LATEST RESULTS AND I DIDN'T HEAR FROM YYOU, HUM...LOL
-
Thanks Tonny2 - you always know how to lighten my mood. I just came out of my room from sitting on my floor balled up crying. I feel so much despair....so lonely at 44 that Im just wasting away here. Ive poured so much into my kids and my job. I wish i could just find the person meant for me. My husband left me for another woman almost 2 years ago and 3 guys i have dated turned out to be liars and just hurt me. I feel so broken and worthless
-
OJO MMY DEAR PITTGURL, YOU ARE NOT LETTING HIV DICTATE YOUR LIFE, LET ALONE THOSE THREE LOSERS...DON'T YOU EVER LET ANYBODY CONTROL YOUR LIFE, YOU ARE A STRONG WOMAN, DON'T LET THIS SITUATION STOP YOU FROM LIVING, YOU ARE A YOUNG WOMAN STILL, JUST, GET TO KNOW BETTER THE MAN YOU GET TO MEET, NO "CUCHICHUI" (SEX), UNTIL YOU GET TO KNOW THE MAN YOU ARE INTERESTED IN, LIKE ALL TIME, NOT EVEN A KISS ON THE FIRST DATE, I KNOW YOU CAN FIND THE RIGHT GUY, JUST BE PATIENT AND KNOW MORE ABOUT THE PEOPLE YOU DEAL WITH, YOU DON'T WANT A BEATUFUL GUY TO TELL YOU BEATIFUL LIES (BILLY JOEL), YOU NEED A GUY WITH FEELING NOT ONE WITH PERSONALITY...I KNOW YOU WILL KEEP FIGHTING BECAUSE IT'S WHAT YOU WANT, AND WE ARE FIGHTER, WE FIGHT FOR WHAT WE WANT...THE WORSE IS IN THE PAST, NOW, LET'S LIVE A NORMAL LIVE, LOVE IT IS DIFFICULT TO FIND, WUTH OR WITHOUT HIV, JUST TRY HARDER, DO NOT QUIT, WE LATINOS NEVER QUIT...BEST OF LUCK...KISSES...YOU WANT TO BE MY CYBER GURLFRIEND?, LOL OJO
-
thanks - ive tried the 2 hiv dating sites and find the same old people on there just giving out their phone #'s and wanting sex. UGH!
You are right - my Latino blood doesnt wanna give up but my heart is so tired of trying and finding skeletons that are STILL awake! :(
Yes, would love to be your cyber girlfriend! We can exchange Valentine besitos ;)
-
Insurance question - live in US - started a new job...does employer get notified of an excessive amount of billing? Im working for a pretty large company (worldwide) but am afraid if i get on their healthcare they are going to question the costly amount of my medication....any advice?
-
Hey PittGurl good to see you again .... I'm also not having any luck dating ..... just been rolling solo ....maybe I'll meet somebody one of these days ???
Troy
-
Thanks Troy - medically going ok - nothing to really report (owe more gratitude to the longtermers that i can never repay- makes me really emotional about their sacrifice!)
tired of looking....so many closet crazy's!!!
-
OJO HELLOOOO MY FAVORITE GURL, LOOK NO MORE, HERE I'M FOR YOU, I WILL GO STRAIGHT FOR YOU, LOL...IT'S SO NICE TO HEAR FROM YOU, I'M SORRY YOU HAVEN'T HAD LUCK FINDING LOVE, AND YES, THERE ARE LOTS OF CRAZIES OUT THERE, I ALREADY QUIT, MAS VALE SOLO QUE MAL ACOMOANADO, LEI CAPICE?...HUGS FAVORITE GURL OJO
-
hahah you guys always make my day :) thank you!!! :-* :-* :-* si entiendo
Im only 43!! there's gotta be SOMEONE out there for me!!!!
-
I'm 49 ..... If I was closer I'd love to take you to dinner ....js ;)
-
OJO HELLOOOO MY FAVORITE GURL, LOOK NO MORE, HERE I'M FOR YOU, I WILL GO STRAIGHT FOR YOU, LOL...IT'S SO NICE TO HEAR FROM YOU, I'M SORRY YOU HAVEN'T HAD LUCK FINDING LOVE, AND YES, THERE ARE LOTS OF CRAZIES OUT THERE, I ALREADY QUIT, MAS VALE SOLO QUE MAL ACOMOANADO, LEI CAPICE?...HUGS FAVORITE GURL OJO
Hello Tonny I think about you often ....I hope are doing well 8)
-
Hello Tonny I think about you often ....I hope are doing well 8)
OJO HELLO TROY, HOW ARE YOU?...YOU ARE SO KIND, I'M DOING FINE, WELL, ALMOST BLIND, WITH EYE PAIN, NEUROPATHY PAIN, GETTING OLDER, I'M OK, I GUESS I CAN'T COMPLAIN, I COULD HAVE BEEN DEAD, HAHAH...SERIOUSLY, I'M DOING GREAT, I JUST MET THE NEWEST MEMMBER OF MY FAMILY, A BRAND NEW BABY GIRL (GRAND-NIECE, OMG, I'M AN OLD FART, LOL), SO CUTE, LIFE IS GREAT, ALTHOUGH MY LOVE LIFE IS WORSE THAN MY FAVORITE @PITGURL, I TOLD HER, SHE WANTS TO GO OUT WITH ME, SHE SAYS THAT IS NOT DESPERATED YET, HAHAH, GOSH, I LOVE THAT WOMAN, I GUESS I WILL DIED LONELY ;(...THANKS AGAIN FOR YOUR KIND WORLDS, NOW YOU ARE MY FAVORITE GUY ;P...CYBER HUGS OJO
-
haah you guys are too funny! Oh Tonny2 dont be jealous :P Besides you got a brand new girl to lay eyes on....that beautiful lil grand-niece!! heeheee
Yea Troy - Louisiana is a bit of a hike from PA hahah :)
Hope you guys have a great weekend...Im ready for a nap!!!
-
Visited dracula again.....had a BLIP :( I know ....no big deal...but for some reason it's bothering me :(
CD4:709
VL: 27
39%
-
I know blips can be stressful, i get very inpatient whenever it happen to the next test.
But like you say, its not big deal so try to focus on that instead. ;)
Jim
-
VL: 27
39%
technically anything under 200 is not considered a blip.
did the percentage change?
-
Nope - same percentage - I think my stats are in my sig - didn't add this newest one yet though
-
ojo Hey my favorite gurll, it's always nice to hear from you...if I were you, I wouldn't worry, it's just a blip, let's wait and see your next Draculas results, you will see the big UD again...I envy your %, share some with me, plz?, and I will love you even more...besos y abrazos amigucha ojo
-
Thank you mi amor Tonny2 :) Tomorrow will be a hard day for me. It's my 14 year wedding anniversary...and i miss him so much....
-
ojo I'm sorry my dear, I will be there for you...hugs ojo
-
Question.....can meds stop working with 100% adherence ? I'm just wondering only cuz I haven't been feeling great lately. I had a blip last time...now i have a cold with a horrible cough....keep thinking what if in these past 3 months my VL is rising and now i got an OI like pneumonia....
-
Question.....can meds stop working with 100% adherence ? I'm just wondering only cuz I haven't been feeling great lately. I had a blip last time...now i have a cold with a horrible cough....keep thinking what if in these past 3 months my VL is rising and now i got an OI like pneumonia....
meds don't stop you catching colds, unfortunately.
You say you had a blip last time but it was 27 so was tinier than tiny. You also have a pretty strong CD4 count and percentage, so even if the drugs had failed - which they almost certainly haven't - it won't have made any difference to this particular cold bug you are suffering from.
You simply don't have to worry about OI's at all
So try to relax :)
-
OJO HOLA MI FAVORITA GURL...I THINK WHAT YOU NEED RIGHT NOW IS A BIG HUG AND A NICE KISS...DID YOU KNOW THAT ARTs DON'T MAKE US SUPERMEN/WOMEN?, ARTs JUST SUPPRESS THE HIV VIRUS, WHICH MEANS, WE ARE STILL GOING TO GET COLDS, FLUS, PIMPLES, LIKE HIV NEGATIVE PEOPLE DO. SO, PLEASE, MAKE YOURSELF A CHICKEN SOUP, INVITE ME OVER TO EAT AND RELAX. GET SOME REST AND YOU WILL GET BETTER...COMPRENDE?...ABRAZOS AMIGA OJO
-
Thank you CaveyUK and Tonny2.....I am going to bed ....coughed all day at work....some reason like 3am I wake up so scared i am dying lately! :(
-
Been a few months - just popping in to say hi.... i guess i am doing ok.....
...medically haven't missed but 2 pills in 2 years, UD, good counts, etc....dr says I am "the perfect patient"
...emotionally, still trying to deal and sort this out ....some days good and others not so good..feel like walking secret
...dating..well dating sucks...45 and single is terrible - hate the games played, the disclosures that have to be made, the fear of rejection...
i guess you could say im living but not really living...
-
ojo Hello my girlfriend. It's nice to hear that you are still single for me, LOL...I'm glad you are the perfect patient, that means you want to live, so, go out and live. You have not idea how much money I will pay if I could see and being able to drive, so I can go out and have fun, meeting people, enjoy life that way...I enjoy life differently now, with family, some friends, I travel twice a year to Mexico, I'm "reading" a lot, doing stuff in my house, I keep myself busy so I don't feel sorry for myself, although, I must confess, sometimes I feel lonely, but I look around and see what I have and forget about my lonelimess...I'm very happy that you are doing great health wise, I just posted my last results, unbelieveable...Ok my girlfriend, hang in there, someone will come to your life when you smile...besos ojo
-
Been a few months - just popping in to say hi.... i guess i am doing ok.....
...medically haven't missed but 2 pills in 2 years, UD, good counts, etc....dr says I am "the perfect patient"
...emotionally, still trying to deal and sort this out ....some days good and others not so good..feel like walking secret
...dating..well dating sucks...45 and single is terrible - hate the games played, the disclosures that have to be made, the fear of rejection...
i guess you could say im living but not really living...
Hey PittGurl I just wanted to say Hi and I'm right there with you I turn 50 in December and I haven't dated anybody in over a year and the whole idea of trying to find somebody who continue to stick with me after I tell them I am Bipolar and HIV poz just seems exhausting and impossible ....I have however made the decision to travel the world in the next 2 years, I'm going to New York City for Christmas and New Years and I'm in the middle of planning a trip to Norway next fall with my Brother and then after that trip I'd like to go to Madrid and Barcelona....I'm feeling like I'm just sitting barely existing ....I want to live in stead of sitting around waiting to die....now having said all of that I still feel like extremely damaged goods and I don't think that will change any time soon.
-
yeah i hear that ....the mind game it plays with you when do you tell? what happens when you tell? would that person even wanna be still in your life as a friend? who would they tell? do you tell right away as to not waste their time or yours? or do you tell after a few months and if rejection, then you wasted your time and prob emotions at that point, and dealing with hurt.......on and on and on..... {sigh}
I feel like my choices are men that are thrown away and damaged goods since no one else wants them. :(
-
Updated questions: once in a monogamous relationship....
- Is there any chance of me (a woman) infecting him (a man) (I am UD for 2 years) -
with no condom and sex during menstruation
- What about oral sex during menstruation?
- What about oral anytime?
-
OJO HELLO MY DEAR FRIEND, SO, YOU ARE CHEATING ON ME?, THAT'S GOOD...WELL, ABOUT YOUR QUEATIONS, I HAVE NOT IDEA ABOUT MENSTRAUTION, BUT READ THE PARTNER STUDIES, AND CHECK WITH YOUR DOCTOR, TAKE HIM WITH YOU SO HE CAN HEAR IT FROM THE DOCTORS MOUTH...I'M GLAD YOU ARE CHEATING ON ME, IF YOU ARE HAPPY, I'M HAPPY...BESOS
-
:)
Ill leave my own thoughts on this short and ill move on, he's an adult and its up to him to worry about his sexual health to be blunt.
To answer your questions well on the forum we get this question or versions off this question in HIV prevention all the time, maybe reading this will give you some additional peace of mind on the topic
https://forums.poz.com/index.php?topic=68030.0
https://forums.poz.com/index.php?topic=65601.0
https://forums.poz.com/index.php?topic=67676.0
https://forums.poz.com/index.php?topic=65636.0
Also, in terms of HIV here is the consensus statement that is very reassuring. http://www.preventionaccess.org/consensus
People living with HIV on ART with an undetectable viral load in their blood have a negligible risk of sexual transmission of HIV. Depending on the drugs employed it may take as long as six months for the viral load to become undetectable. Continued and reliable HIV suppression requires selection of appropriate agents and excellent adherence to treatment. HIV viral suppression should be monitored to assure both personal health and public health benefits.
NOTE: An undetectable HIV viral load only prevents HIV transmission to sexual partners. Condoms also help prevent HIV transmission as well as other STIs and pregnancy. The choice of HIV prevention method may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners or in a non-monogamous relationship, they might consider using condoms to prevent other STIs.
Jim
-
hahah my dear ONE love Tonny2 <3 This man is amazing and treats me amazing too! I pray it works out. I was upfront from Day 1 and he was ok with that. Its going on 1 month now and he has met my kids and is very protective of me. I just pray it lasts because I have so much to give a partner. KWIM? He has said if he gets it am i going to think of him in some sort of way...I said no....so that brought up another question...if he does by chance get it from me...would he get the strain i have?
-
Thanks Jim.... I would love for this to be my last relationship!!! He's a great guy!
-
A few updates:
- Bye bye boyfriend...ended up being a very weird man {sigh my picker is so broke}
- Completely flipped my Kia Soul and skidded down a guardrail while on lunch running to pick up my CPAP machine bc i have a touch of sleep apnea on 12/11/17 (walked away with only muscular pain - - airbags never went off which im thinking possibly lawsuit). Car totale at $18K damage and was only 5 payments from paying it off. Had glass in my throat and mouth :( But am thankful to be alive!!!
- Lost my daddy who was 69 years old to Bulbar ALS 12/18/17 :( I miss him so much My brother and I took turns for the past 4 weeks 24/7 by his side to help my mom. He wanted to be at home and hospice was wonderful. At the end he only recognized my 14 year old son who they were best buddies. Everyday I cry- he and I were diagnosed within a month of each other.
-
Grr had my flu shot and still I got it!!!! Y'all know I am scared of everything....and I'm told this years is really bad one...and it is!!! I'm scared :( saw dr today....said no signs of pneumonia, lungs sound good but if anything changes to call her. Or go to the ER. She ordered Tamiflu for me but when I got to my Pharmacy they told me it needs pre-authorization and by that time the doctor's office was closed so I haven't been able to pick it up. I've been using Sudafed PE and it's been helping a lot and I cleared it with the pharmacist in regards to interactions with my triumeq.
-
It does seem to be a bad year for colds and flu.
I had a cold at xmas which seemed to disappear but keeps popping back up which is annoying. It's not flu though (thankfully), but is the first time I've had a cold since diagnosis 2 years ago so perhaps without the flu shot it would have been worse. Lots of folk at my work have been laid up with various bugs over the last month or so.
And sorry to hear about your car accident. Glad to read you are okay.
-
Thanks CaveyUK - 95% better but wow it was a pretty bad one! Thank you for the good thoughts!! How are you other than the recurring cold?
-
Hi! Just checking in and saying hello! All is going well right now (i feel like i have grown leaps and bounds since my 1st post 3 years ago!)
I do have a question.....i live in PA and have state insurance through MAWD (disability) and pay a $100 premium. HIPP just called me and said that i am being enrolled in their program and will need to take my company offered insurance. I hate change... ugh! Its Aetna and supposedly good but i really would love some input here on this if anyone has HIPP. i have really dont want my employer digging into my DX!!!
-
Still around and doing well! :) miss everyone!