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Main Forums => I Just Tested Poz => Topic started by: LeftyBowler300 on March 26, 2017, 08:13:45 am

Title: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on March 26, 2017, 08:13:45 am
So I've had a headache, low grade fever (99.2-101), nausea and fatigue for about two weeks. I've had oral thrush, itchy legs and throat sores for about 2-3 months. My body feels like I got hit by a truck. I can't hold down much food, and I've lost probably 7-8 freshly gained pounds (I was working out and eating a lot before this attack).

I'm currently taking augmentin for what my PCP thought was diverticulitis (abdominal pain, nausea, belching, fever), but now I've realized it's most likely something worse.

The thrush tipped me off to go to Walgreens and get a OraQuick take home HIV test, even though thrush is commonly caused by antibiotics. I took it about 24 hours ago, and it was positive. My heart hit the floor, and I immediately ran to the bathroom to vomit. I told my partner while crying hysterically. He tried his best to comfort me. I told him to get tested. He did, and he's negative.

I have a hard time figuring out when I could have gotten infected, as my sexual encounters as of late are all low risk (giving oral).

My last high risk encounter (unprotected anal) was back in late 2012, so if that's when I got it then I'm scared to death because that means I've had it for four years. But, I followed up with the guy and he said he's negative and gets tested regularly (of course I understand that I'm trusting his word).

My last oral encounter was almost a year ago, but this guy is suspect because when we hooked up he had a facebook but now it seems as if he's dropped off the face of the earth.

So as much as I'm hoping this is symptoms of ARS, I'm fearing for much, much worse, like advanced stage

My hysterical borderline panic crying quickly turned to realizing how awful I'm feeling and that I need to step into action to confirm a diagnosis and start treatment.

It's the weekend, and clinics and the health department is closed until Monday.

I thought about going to the ER in hopes that I can speed up confirmatory testing, but I called them and they said they'd probably just help my symptoms and direct me to the health department when they open on Monday.

I know test results from the health department take about 7-10 days, so that means at least 7-10 more days of feeling like this before I'm confirmed and on treatment...

But the way I feel I'm honestly questioning if I have that much time... I can't eat much and I feel horrible.

I just need some support right now... and hopefully some similar stories of people who made it.. because I really don't want to die before I even get on treatment. What do I do?
Title: Re: Is there a light at the end of the tunnel?
Post by: Ptrk3 on March 26, 2017, 12:14:16 pm
Since you did have an event of unprotected, receptive anal sex, you are at risk for potential HIV infection, so you will need to be tested for HIV antibodies (as you plan).

The OraQuick test is not conclusive, so you should not presume that it is accurate.

Symptoms are not a reliable indicator of HIV infection since symptoms, if they occur at all, vary widely among individuals.  Therefore, we don't assess them on these forums and you should not assess them, either.  Thrush, in fact, can be caused by a heavy regimen of antibiotics.

If it turns out that you are, in fact, HIV positive, you will be fine--even if you have been infected for several years.  Antiretroviral medication these days is nothing short of miraculous:  you are not dying and are not in the "late" stages of anything (other than, perhaps, your current anxiety over the matter).  Many people on these forums have survived single-digit CD4's and multiple opportunistic infections (I am one of those people).

You will live a long and healthy life.

For the time being, however, though I sure you are very anxious, you will simply have to wait for an HIV-antibody test and a subsequent confirmatory test. 

Continue to rely on this forum for ongoing support and guidance.
Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on March 26, 2017, 12:18:55 pm
Hi

Sorry to here you had a reactive result. Look if what you said is correct it's not ARS and could be anything making you sick, so go see your doctor and treat what is making you sick.

I agree with Patrick.

Look if you was indeed infected 5 years ago its not the end of the world and will be fine once you start treatment . That is of course if your follow up test indeed confirm your status we see plenty of false reactive results here so no need to panic and even if confirmed than still no need to panic.

Test and in the meantime treat what is making you ill.

Jim
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 06, 2017, 03:22:11 am
Hi all,

I was diagnosed on 4/1 (5 days ago)
CD4 8, VL 800,000+

I was hospitalized for 6 days with histoplasmosis, and what I think they said was mild PCP.

I've been discharged due to fever going down and good vitals, but I still have the PICC line in for out patient IV antibiotic for the next 8 days.

I'm taking mepron, amphocetirin B and cefuroxime axetil (the amphocetrin is the only one through IV).

I haven't started ART yet because the doctor wanted to get these infections out of the way first.

But this treatment seems to be giving me very frequent diarrhea. I got tested for C. Diff. Which was negative. But I feel like I'm living on the toilet. I don't even want to go to the grocery store out of fear of urgently needing to find a toilet. I don't have the desire to eat much, and I get full/nauseous after very little. I'm losing weight.

Is this normal? Will it ever end? I know this is probably the hardest part, but it's just hard fighting through it. It's very stressful and scary.
Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on April 06, 2017, 03:57:48 am
Hi

Sorry to hear you are not feeling the best and I hope you recover soon with the treatment.

Quote
But this treatment seems to be giving me very frequent diarrhea

Yeah I can image that, look I know you are feeling really rough at the moment and not having a very pleasant time at all (understatement I know) however the treatment is not going to be for ever so do keep that in mind, you just need to get through this hurdle.

You will get better and once you are and can start your HIV treatment and suppress that bug and get back to your life. I know its seem hard to Imagine but its the truth trust me.   

Wishing you all the best.

Jim

Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 06, 2017, 04:02:09 am
Thanks Jim,

I'm trying to hang in there. I just miss what well feels like.
Title: Re: Is there a light at the end of the tunnel?
Post by: harleymc on April 06, 2017, 01:41:45 pm
I'm sorry you are so crook at the moment. It will pass.

This stage of your life will give you a lot of strength in years to come. Any time you have a crisis, you'll look back at this time and say to your self, If I got through April 2017, then nothing is too big a challenge.

Hope you are feeling well soon.
Title: Re: Is there a light at the end of the tunnel?
Post by: Hito on April 06, 2017, 09:19:11 pm
Hello Lefty.

I felt the exact same way when I was diagnosed. I wasn't sick like you were, but I am so happy that you are getting the care you need.

I remember be just as scared and helpless. I also remember what it was like to tell my partner at the time. I know it isn't much, but I want to let you know that things do get better and you will be OK.

Once you start treatment you will be surprised how soon it works. I reached undetectable within a month and I know that you will be there soon.

I am still a newbie myself within this community, but you will be OK. One day at a time.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 07, 2017, 08:34:01 am
Thank you Harley and hito for your kind words.

This is a rough battle. I've lost over 12 pounds, down to 5'9 136. I just don't have the desire to eat, and any little food makes me nauseous. And I also know anything I eat right now has to come out the other end...

I'm also facing mental stresses. I look and feel like a walking zombie right now, and I'm embarrassed to be seen in public, especially by people who know me.

If there's anyone out there who's been through worse, your encouraging story would be super helpful right now.
Title: Re: Is there a light at the end of the tunnel?
Post by: harleymc on April 08, 2017, 07:30:18 am
The dreaded squirts, they are just the pits.

I fully empathise with you on that. Hopefully when all the antibiotics cease, your gut can get back to normal.

If you diarrhea is liquid rather than poorly formed I have a suggestion., this sounds counter intuitive but it helped me a bit. Try adding some dietary fibre. It regulates water in the gut.

Try mixing up a live yogurt with some water and fibre, swallow it as fast as you can, it's not real nice, but it may help.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 08, 2017, 07:38:21 am
Hey Harley

I've been eating probiotic yogurt and taking an additional 2 probiotic pills per day.
My stomach still rumbles and tumbles like there's a water slide in my colon, but what comes out seems a tad easier to handle. I do have a fiber supplement that I might start taking though, since you mentioned it. I hope I'm not OD'ing on probiotics
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on April 08, 2017, 08:32:01 am
Hi Lefty,
I was in the hospital with PCP for 2 weeks in 95 so I know how shitty you feel.
The good news is your diarrhea will subside the same time as the PCP and you will feel tons better soon. The even better news is that the new meds are awesome and most have very little side affects if any.

You want to hear worse ... the original version of norvir was liquid and was refrigerated. It tasted like shit and to make matters worse it went through you like greased lightning.  Everyone carried spare underwear in those days  :)

Hope you feel better soon and start getting on with life as you once knew it.

Hugs, Wade

Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 08, 2017, 09:21:28 am
Hey Wade,

Thanks for the encouragement. I'm sure PCP was super scary back then. I'm glad medicine has evolved.
It's good to know there are people with AIDS diagnosis in 95 still doing well. Especially since I know you guys had to suffer a whole lot more than us youngins have to. Little
things like that give me hope and keep me from breaking down.

I feel a little better today. The past few days for breakfast I could barely finish 1 pop tart. Today I was able to stuff down a pop tart and a yogurt. Baby steps I guess.
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on April 08, 2017, 09:39:01 am
Hey Lefty,

I remember eating a lot of peanut butter, it's full of protein and my gut tolerated it well
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 14, 2017, 11:00:00 am
Hey guys,

Today seems a bit of a rough day for me mentally.

I got the picc line removed yesterday (histoplasmosis treatment), and I start Genvoya/Bactrim Monday. Either the Ceftin or Ambisome gave me a pretty bad hives breakout that itches like crazy. My IDS thinks it's from the Ceftin, but I'm wondering why it's still there a couple days after I discontinued it.

I've been paranoid and checking my body constantly for any new moles or lumps or rashes. I know my body is vulnerable right now and I'm scared to death for things like melanoma, lymphoma etc...

This still feels like a nightmare I've yet to wake up from. I've been prescribed Ativan for anxiety, but I haven't really taken it much. I feel like I can breakdown and start sobbing at any moment.
Title: Re: Is there a light at the end of the tunnel?
Post by: terrymoore on April 14, 2017, 12:05:53 pm
Hi,
Sorry about your diagnosis and sorry you are feeling so lousy. I was lucky enough to get symptoms shortly after i was infected so i got tested and stated pretty soon after. I remember how crappy i felt - especially the runs and the lack of appetite etc. I am sure it is nothing compared to what you are going through. I was also very paranoid and over analyzed every single new spot, pimple, cough, sneeze, itch, twitch etc etc (read back in my posts - today it seems eons ago!
Drink lots of water, take your meds, get better. Today we are lucky - the doctors know what they are doing, the meds work, you will feel better soon enough. Keep your spirits up!
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on April 14, 2017, 12:06:27 pm
Hey Lefty,
There is light at the end of the tunnel !
You're starting Genvoya on Monday, it's powerful with little or no side affects and you will feel better in no time short. I take that myself.

It takes a few days for things to be flushed out of your system and the itching should be subsiding. You are being treated for the things your body is vulnerable for and you are starting treatment in a few days. Try to relax, get some rest and for Pete's sake eat something  :)

Hugs, Wade
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on April 14, 2017, 12:08:02 pm
Terry and I posted at the same time  ;D
Title: Re: Is there a light at the end of the tunnel?
Post by: DANIELtakashi on April 14, 2017, 08:04:07 pm
Hi.

I was down with PCP and other things three years ago.
I cried saying my life was over but now l am back at work, leading a busy life here in this greater TOKYO.   Today l am going to a beachside city and enjoy the hot spring spa and good sushi.
You will get recovered when you start taking medicine.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 15, 2017, 05:27:34 pm
Thank you guys for your company and encouragement. I'm absorbing it all in right now, because I need all I can get to keep my sanity.

I started Sporanox today. It's a nasty liquid, and I read that I might need to take it for up to a year to prevent a histoplasmosis relapse, so I'm not too happy about it. (20ML twice a day on an empty stomach)


Terry -
the paranoia sucks.... how long did it take you to snap out of it? Did your vigilance catch anything early during that period or was it all in vain?

Wade -
I took your advice on the peanut butter. My stomach seems to handle it pretty well, although bread makes me nauseous right now for some reason, so I just take a spoonful or two of crunchy peanut butter by itself or eat it with saltines.
The hives are becoming less severe and itchy, thankfully.
When do you take your Genvoya? I'm trying to decide if I should take it in the morning with breakfast and risk dealing with side effects at work, or just take it after work around dinner time and risk insomnia.
I'm inconveniently returning back to work the same day I take my first pill, so I'm not sure what to expect.

Daniel -
glad you're recovered and living your life awesomely. I hope in a few years I can say the same. How long were you hospitalized?
Title: Re: Is there a light at the end of the tunnel?
Post by: JosephP on April 15, 2017, 11:09:01 pm
H
I've been paranoid and checking my body constantly for any new moles or lumps or rashes. I know my body is vulnerable right now and I'm scared to death for things like melanoma, lymphoma etc...

This still feels like a nightmare I've yet to wake up from. I've been prescribed Ativan for anxiety, but I haven't really taken it much. I feel like I can breakdown and start sobbing at any moment.

Hang in there... I felt exactly the same way when diagnosed almost 4 years now... Yet... I am here.. I was really scared to the point that my ID doc said to me to stop reading everything that came across my eyes and her very encouraging words: "You are not dying of HIV. You are living with HIV". I still check.. And I still worry about new symptoms, new freckles, new lumps.. But it has become easier! You'll see how everything's gonna work out for you! Adhere to your meds. Genvoya is exceptionally mild in side effects. I, myself, am on it.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 16, 2017, 03:50:16 pm
Thanks Joseph,

When do you take your Genvoya?

I start taking it tomorrow (with Bactrim and Sporonox), and I'm trying to figure out the best routine before I take my first pill. I don't want to risk side effects at work (breakfast/lunch) but I also don't want insomnia (plenty of time to metabolize it before bed) which makes dinner time tricky.

Sporanox needs an empty stomach, Genvoya needs food.

I am determined for adherence, but I want it to be optimal and less stress as possible.
Title: Re: Is there a light at the end of the tunnel?
Post by: DANIELtakashi on April 16, 2017, 07:12:34 pm
Lefty,

Hi.
I was hospitalized for a month.
I couldn't eat anything for the first two weeks,  no appetite.

One local man with the same disease, 70 years old,  was down with PCP ten years ago and now he goes to the gym five days a week.   You will be all right.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 17, 2017, 05:38:36 pm
I took my first Genvoya today.

Something in that short time between taking the pill out of the bottle, and swallowing it down with water, caused reality to sink in full fledged.

This is the first time I've really had a hard cry since my diagnosis. My first cry was more of a panic cry. But this time, this cry was full of nothing but anguish, despair and shame.

It must have gone on for almost an hour, and I kept repeating over and over to myself "I don't want this. Why do I have to have this. Why me."

I can't help but feel like I'm less of a human. My confidence and self-worth are shot. I feel like a small fraction of who I used to be.

I guess I just gotta carry on...
Title: Re: Is there a light at the end of the tunnel?
Post by: harleymc on April 17, 2017, 06:43:12 pm
Sorry to hear you've been feeling psychologically rough around the edges.
I remember having those same feelings, but that was in 1985 and their were no treatments.

Anguish despair and shame... your mind is playing in some nasty territory.
Shame.... HIV is just a bit of dna in a lipid casing, it has no sense of morality. We get HIV if we are being fully human, we get it loving, being loved, seeking and giving pleasure, seeking or giving comfort. In a very small percentage of these very normal, very human exchanges an infection occurs. You can't undo the past. In time you may even welcome the changes you make in your life in response to the virus.

I'm not sure what the despair and anguish  is about. Is it about taking a pill once a day? That'll be the only major difference in your life. There is no reason that you can't do anything in your life that you would have done without HIV. You'll fall in love, maybe out of love, change careers, travel abroad, get a degree, even have children.

I know this is all new to you, but this could be a great time to see a clinical psychologist or a psychiatrist so you can get your thinking  and your moods onto an even keel that will set you up achieving your best out of life, and feeling happy while you do it.
Title: Re: Is there a light at the end of the tunnel?
Post by: FES on April 17, 2017, 10:40:31 pm
Lefty,

I am sorry to hear your story but I can truly relate to your situation.  This time last year I was in the battle of my life with Cryto Meningitis.  The thing is I did not have a clue that any of this was even happening to me at the time.  My partner  found me unresponsive on the couch one morning and has told me that I was actually talking to a little boy, a man and woman that where standing in the corner and at that point he realized I didn't have long before something bad would happen.  I would always talk about when caring for patients in ICU about how they would talk to others that where not there before they passed.  He took that experience and ran with it and me to the ER where I was diagnosed with AIDS CD$ 20, Cryto Meningitis, brain had already started herniating out of my skull.  The ER physician told him that I had approximately 12-24 hours at most before I would have passed and that there were still no guarantee that I would pull through. AT the time I was to unstable to go to the OR to receive the pressure to help control the brain herniation.  I was in ICU for 3 days before I could make it through surgery and when I came out it was all confirmed, that I I had AIDS / Crypto in my brain, blood, and bones.  I remained in the ICU for 14 days where I received AMP. B to try and get the crypto under control.  So fast forward here just a little after 17 days I was released home to start recovery which I still have no recollection to any of this happening to me, it was not until about a month and half out that I realized what was going on.  I was unable to walk because of the lose and hit my body had ring my illness and discovery.  My body lost 50lbs within the 17days that I was hospitalized, at home I had to craw if I was able to even manage that little bit of movement.  The only thing I could do for nutrition at the time and something you may try is ENSURE, yes it tool a little getting use to but it got me back to my feet with in a couple months (CHOCOLATE MY FAVORITE, lol).  The next few months where beyond anything that I could ever describe and can not even start to touch on how I felt.  Like you stated about feeling just plan ashamed, dirty, unwanted, untouchable, and that no one would ever want to be with me again including friends or family.

Fast forward once again, after being home for a couple months I started on Genvoya as well.  It has worked miracles for me, just make sure you eat something about 10 to min before you take it or within 10 min after for me to keep from getting nauseated.  My CD4 went from 20 to now 264, and my VL is undetectable.  Even with the results and everything I have been through and see the improvements daily I feel as though I should not be here that I would be better off if I would just pass on.  Guess what I am totally wrong.  My partner that took me to the hospital is now my spouse he has literally been my guardian Angel, Best Friend, Partner, Spouse, and Love.

Here is some of the things that I think you really need to get through this time.  A great health care team that will help you, support you, and be there for any need you may have.  IF you do not have an ID physician make sure you get referred to one that can watch and manage you close as well refer you to other specialist if needed.  AMP B did some serious damage to my body but it was take it or die and Im here so I got it, lol.  Try to stay positive even tough it is truly one of the hardest things to do at this point, I did not believe anything that anyone was telling me at the time.  Everyone was like it will get better trust me, I was like you have no idea what this is like.  Well they may have not actually experienced the situation themselves but has assisted many other in the past. If you have any problems affording your medication Genvoya drug company will assist you and it can all be completed on-line.

Sorry this is so long but this has actually helped me to talk about my experience.  I have jumped around a little but its hard still to keep somethings straight with my thought process. My hope is to return to work within the next 6months to a year, fingers crossed.  Keep your chin up and stay strong it will get better.

Huggs
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 18, 2017, 11:08:11 am
FES,

Thank you so much for sharing your story. It's good to know the body can recover from some pretty harsh things. Crypto Meningitis sounds very scary.

I guess I got pretty lucky as far as OI's go, because I was able to return to work in 3 weeks. It helps that I have a cushy sit down job with very little physical stress.

I hope you keep recovering so you can work again!
Do you have a thread that you post in so I can follow your updates?


On a Genvoya note ~
Definitely felt the nausea this morning, but it slowly got better. That could have been the Genvoya or the bactrim. I have what I call the "foggy head" fatigue and a mild headache.  Still have the squirts, but meh whatever sadly I'm getting used to them. I expected worse side effects, so this isn't too bad.
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on April 18, 2017, 11:18:01 am
Hi Lefty,
Has anyone ever tested your stool for a parasite ?
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 18, 2017, 05:35:47 pm
Hi Lefty,
Has anyone ever tested your stool for a parasite ?

Hey Wade!

They took a stool sample while I was at the hospital (not sure what it was tested for), and another stool sample when I was going to the outpatient clinic almost 2 weeks ago. The second time they tested for C. Diff, which was negative.

But I looked at the side effects of the medicines I'm taking, and literally every single one of them can cause diarrhea (Mepron, Sporanox, Genvoya, Bactrim, Azithromycin), so I can take my pick when guessing which one(s) is/are the culprit. It seems to be worse in the morning, but starts to settle down a little after lunch time. I think it's the Sporanox I take on an empty stomach when I wake up, but my IDS seems to think otherwise.

I take a probiotic pill everyday and eat at least one cup of active culture yogurt, so hopefully things will work themselves out eventually.
Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on April 19, 2017, 07:01:48 am
Not much to add but just wanted to say that, thankfully you will not be on this large combination of drugs for long, so you should see improvement with time and as you heal and can stop some of the meds. I know antibiotics always mess me up, and Bactrim (well the same class) was a particular unpleasant rough ride.

Hope you feel better soon.

Jim

Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on April 19, 2017, 08:39:54 am
Hey Wade!

They took a stool sample while I was at the hospital (not sure what it was tested for), and another stool sample when I was going to the outpatient clinic almost 2 weeks ago. The second time they tested for C. Diff, which was negative.

But I looked at the side effects of the medicines I'm taking, and literally every single one of them can cause diarrhea (Mepron, Sporanox, Genvoya, Bactrim, Azithromycin), so I can take my pick when guessing which one(s) is/are the culprit. It seems to be worse in the morning, but starts to settle down a little after lunch time. I think it's the Sporanox I take on an empty stomach when I wake up, but my IDS seems to think otherwise.

I take a probiotic pill everyday and eat at least one cup of active culture yogurt, so hopefully things will work themselves out eventually.

I glad they ruled that out, must be the antibiotics or everything combined as Jim mentioned.
You will probably be on the bactrim for a while, but what about the others ?
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 19, 2017, 09:22:32 am
Thanks Jim.

I really appreciate your kind words of encouragement. Especially when I'm down and feeling hopeless. It really does help me get through rocky parts and make me feel like I can still have a life after this hard part is over.

Wade -

I guess how long I take all these meds will depend on how quickly my CD4 can bounce back. Since it was only 8, and my VL up over 800k, I'm sure it might take some time. Hopefully It may help that I'm young (~30). I know I've read some posts on here where people's CD4 counts take years to recover, so I'm a little scared. I have an appointment on May 5 and they'll be giving me an update on the numbers.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 21, 2017, 05:44:45 pm
Today is my 5th day of Genvoya
Nausea is better, diarrhea seems less frequent, but out of all 5 work days, today I felt the worst as far as general unwell feeling. I look paler, I have a mild headache, fatigue/tired. No fever, sore throat etc.. I was still able to work, but I felt "off" all day.

Obviously this could be any number of things, but I was wondering if anyone else taking Genvoya (or any combo drug) experienced something similar in the beginning
Title: Re: Is there a light at the end of the tunnel?
Post by: harleymc on April 22, 2017, 12:11:14 am
I'm trying to get my head around where your head is at.

You're showing the same level of anxiety about your successful week at work where you were headachey one day as your time in hospital when you could have died.
You're shifting the goalposts from Can I survive the next day or two, to I've taken a pill for 5 days why isn't my health perfect?

genvoya isn't prescribed for headache.

Go and see a counselor to get your anxiety under control.
Title: Re: Is there a light at the end of the tunnel?
Post by: hiv_rizzy on April 22, 2017, 12:44:24 am
Hang in there. Things might look rough but you will pull through. I've been on Atripla for months and I am undetectable <20 . My cd4 was only 16 but viral load was just about 13,000k. It has been a slow recovery for my cd4 (currently at 137) but I know it will probably keep getting higher once the virus remains under control
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 22, 2017, 09:20:31 am

You're shifting the goalposts from Can I survive the next day or two, to I've taken a pill for 5 days why isn't my health perfect?

Yeah, and honestly I'll probably keep shifting the goalposts, just because I will be changing. The health goals I have next year won't be the same as the goals right now. Right now, I just want to survive the damage that's been done to my body and immune system. Next year I might have anxiety because my cd4 isn't jumping as high as I expected. It's all relative.

I think my battle right now is knowing that while my cd4 is a merely 8, my body is very vulnerable to many different things. I'm also taking several medicines that cause a wide range of side effects (including fever).

So any new cough, rumble, pimple, headache, paleness, bump, pain, or unwell feeling causes me to be high alert, because I don't know what's just a new and weird side effect or an OI showing its ugly face.
Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on April 22, 2017, 11:44:23 am
Quote
Next year I might have anxiety because my cd4 isn't jumping as high as I expected.
I hope not as worrying about it is kind of pointless ;)

Quote
So any new cough, rumble, pimple, headache, paleness, bump, pain, or unwell feeling causes me to be high alert, because I don't know what's just a new and weird side effect or an OI showing its ugly face.

At the moment you have set yourself on red alert for this stuff and i can understand this, however look you are going to get sick in life just like any other person regardless of HIV status So coughs, rumbles, pimples, headaches, paleness, bumps, pains, or unwell feeling, bruises and scraps that's living.  ;)

If you're unsure about something and you feel unwell and i mean over the long term the next 10,20,30 or 40 years + that you are going to around, simply see a frontline doctor (GP/Primary) as you are going to get through this time now however its not much good if you spend the rest of your days freaking out or setting goals like CD4's that you can not influence, it not going to be much fun if you keep worrying long term if i am honest.

Wishing you all the best over the next few weeks as you adjust to treatment and settle in and I hope you feel better soon and that you soon (within a few months I hope) can drop the preventive treatments like Bactrim

Take it easy, try not to overthink or worry about thing. I know that easier said that done.

Jim
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on April 23, 2017, 07:14:28 pm
Thanks Jim.


Can I post updates in this post, sort of like a blog of my experience? Or are there certain rules to follow?

Update:

day 7 of Genvoya
day 3 of headache (back/top of head, pain is in sync with heartbeat kinda like a stress/tension headache). tylenol helps.
day million of diarrhea (at least that's what it seems). Seems worse in the morning then settles as the day goes on. Probably because 4-8 episodes in the morning eliminate everything inside of me. I originally started taking probiotics and active culture yogurt in hopes to help the diarrhea, but now I just take them to replenish what keeps getting wiped out.
Appetite is better. Ate so much crappy food yesterday and got bad indegestion that kept me up all night.

Overall in a pretty good mood today. Company from my mom and partner helps. They've occasionally caught me googling information on my phone out of anxiety and told me to cut it out.


Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on April 23, 2017, 07:22:29 pm
Thanks Jim.

Can I post updates in this post, sort of like a blog of my experience? Or are there certain rules to follow?

Post away. Several members maintain long running threads.  Just keep in mind unlike a blog people will reply to stuff.

Quote
They've occasionally caught me googling information on my phone out of anxiety and told me to cut it out.

Indeed, cut it out ;)

Jim
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on May 03, 2017, 07:25:16 pm
Just an Update:

The headaches are pretty much gone. Same with neck pain that I had for a while.

Diarrhea comes and goes. It's gotten a lot better since I decided to eat with the Sporanox. My bowel seems to have a habit of waking me up at 5 every morning, cramping, and telling me I need to get to the bathroom ASAP.
I go 2-3 times in the morning, usually within 30 minutes of each other. First one is well formed and healthy looking, then the succeeding bm(s) are progressively mushier.
I guess it's not too bad given the large amount of prophylaxis I'm on.

But enough about poop. (Sorry, but it's been the story of the past month and a half of my life, and the main cause of my stress).

I haven't missed a day of work since returning.

Overall I feel pretty good, except my eyes feel weird. I seem to be squinting a lot more lately, maybe due to sensitivity. They're also more watery than usual. Vision seems fine
Naturally I obsessively googled things like ocular lymphoma, crypto, cytomegalovirus, and other things that can kill me. I also found that allergies and staring at computer screens all day long (my job) can also cause this. I'll go with that for now  ;D.

Oh, and I've been eating like a pig the last 10 days. Mostly healthy stuff (yogurt, fruits, veggies, fish, chicken and whole grains) with a couple slices of butter cake, pizza, brisket, or some chips thrown in the mix. I also started drinking green tea.

I hope I stay feeling halfway decent. I'm scared to death of developing some sort of cancer while my immune system is so damaged. I've googled this obsessively too.
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 03, 2017, 09:51:02 pm


      OJO      HELLO THERE....I JUST WANT TO WELCOME TO THE FORUM...I READ THAT YOUR CD4=8, WAY TO LOW...I ALSO READ YOU ARE ON ANTIBIOTICS TO PREVENY OIs...WONDER IF YOU HAVE SEEN AN OPHTAMOLOGIST TO CHECK FOR CMV, BE AWARE FOR FLOATERS IN YOUR EYES, IF YOU SEE THEM, LET YOUR ID DOCTOR KNOW SO HE CAN REFERRER YOU TO AN OPHTAMOLOGIST, YOU MIGHT EVEN WANT TO ASK YOUR DOCTOR FOR MEDICATION TO PREVENT CMV...I'M GLAD YOU ARE FEELING BETTER. NOBODY SAID THAT LIVING WITH AIDS AND HIV WAS EASY, YOU HAVE TO BE STRONG. IF YOU FOLLOW YOUR ID DOCTORS INSTRUCTIONS YOU WILL BE FINE...YES, THERE IS LIGHT AT THE END OF THE TUNNEL, BUT, IN ORDER TO FIND IT, YOU REALLY NEED TO FIGHT HARD TO FIND IT...BEST WISHES...BY THE WAY, TAKE IT FROM SOMEONE WHO WAS IN YOUR SAME SITUATION 22 YEARS AGO, THERE WERE DIFFICULT TIMESM BUT I WANTED TO SEE THE LIGHT AT THE END OF THE TUNNEL AND FPIGHT TO FIND IT, I DID FIND IT AND I'M STILL HERE, SHARING MY EXPERIENCES WITH YOU AND OTHERS...KEEP FIGHTING, IT WILL HET BETTER...IF I MAY, PLEASE STOP GOOGLING, YOU WILL GO CRAZY WITH THINGS YOU WON'T UNDERSTAND...CYBER HUG ON YOUR WAY OJO

PS. HAVEN'T REAG THE WHOLE THREAD, JUST IN CASE I MISSED SOMETHING
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on May 04, 2017, 05:59:03 pm
Hey Tonny,

Thank you so much for your response. I read a lot of your replies to various posts, and you seem like a warm and welcoming person.

I did get checked by an ophthalmologist. I had to look into bright lights, got dialated, tested my vision. Nothing out of the ordinary. "

Do you have your story on here? I like to read stories of people in my situation that have made it.
Title: Re: Is there a light at the end of the tunnel?
Post by: harleymc on May 04, 2017, 06:08:56 pm
Hi, things sound like they are on the up and up except for your anxiety.

Your anxiety is crucifying you at the moment but it doesn't need to.
Go and get your anxiety treated, get an appointment with a psychologist  or do an online program like moodgym.
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 05, 2017, 01:03:49 pm
Hey Tonny,

Thank you so much for your response. I read a lot of your replies to various posts, and you seem like a warm and welcoming person.

I did get checked by an ophthalmologist. I had to look into bright lights, got dialated, tested my vision. Nothing out of the ordinary. "

Do you have your story on here? I like to read stories of people in my situation that have made it.

      OJO       HELLO AGAIN LEFTY...I'M GLAD THAT YOUR EYES ARE DOING FINE, JUST KEEP AN EYE (ojo) IN CASE YOU NOTICE "FLOATERS", IF YOU DO, SEE RHE EYE SPECIALIST, BETTER SAFE THAN SORRY...YOUR NUMBER ARE VERY LOW, BUT, WE HAVE ANOTHER MWMBWE @2CELLS, EVEN LOWER THAN YOU, YOU CAN READ HIS STORY TOO. YOU NEED TO TAKE YOUR MED/S AS PRESCRIBED AND TRY TO HAVE A GOOD ATTITUDE ABOUT LIFE...DO NOT GET ME WRONG, LIKE SOMEONE DID IT, I'M NOT SAYING TO SUCK IT UP, OR GET OVER IT, I GUESS NOBODY EVER GETS OVER THE FACT THAT WE ARE LIVING WITH A VIRUS, AT LEAST, IN 22 YEARS, I HAVEN'T GOTTEN OVER IT, BUT, YOU DECIDE HOW LONG YOU WANT TO MOURN, TO DIGEST THE NEWS, THEN, YOU DECIDE WHEN TO START LEARNING HOW TO LIVE WITH THIS VIRUS, THAT IT SEEMS, IT IS HERE TO STAY FOR A LONG TIME...I HAVEN'T READ YOUR WHOLE THREAD, I HAVE SOME LIMITATIONS DUE TO CMV RETINITIS, SO, FORGIVE ME IF I'M REAPITING WHAT SOMEBODY ELSE HAS SAID THE SAME.

OK, ABOUT MY STORU, YOU CAN SEE LOTS OF  OTHERS MEMBERS STORIES ON "LIVING WITH HIV"...IF YOU ARE INTERESTED IN MINE, I THINK I TOLD SOME OF MY STORY ON ONE THREAD "22 YEARS OF OVERTIME", JANUARY 11...THERE IS ANOTHER THREAD, "HOPE DIES LAST", ON APRIL 10...YOU MIGHT WANT TO READ "2TCELL" STORY, IT IS MORE RECENT, BACK IN THE DAYS, WE, LTS, HAD OTHER CHALLENGES.

ANYWAY...I AGREE WITH @HALEYMC, YOU DO NOT NEED MORE ANXIETY, STOP READING ABOUT WHAT "MIGHT" HAPPEN, JUST TRY TO RELAX, YOU DO NOT NEED MORE STRESS...IF SOMETHING WERE TO SHOW UP, THEN, YOU WILL WORRY ABOUT, AND TREAT WHATEVER IT MIGHT BE...WISHING YOU THE BEST, I HOPE YOU CAN UNDERSTAND MY BAD ENGLISH, IT SEEMS THAT THE MOST DIFFICULT IT GETS TO ME TO TYPE, I LOST CONCENTRATION WHAT I'M TYPING, SORRY IN ADVANCE...CYBER HUG, YOU WILL BE FINE. YOU ARE NOT ALONE ANYMORE                                                                                                                  OJO
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 08, 2017, 08:44:37 pm


          ojo       Hello @LeftyBowler300...I was wondering how you have been doing, I hope you are feeling more relax...I sent you a PM and for some readon you have me blocked...wishing you the best...more cyber hugs                                           ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on May 09, 2017, 01:53:14 pm
Hey Tonny!

I'm feeling a little better day by day.

My coworkers asked me if I'm feeling better, because I look better.

They said I got my color back (instead of being pale like I was when I first returned to work).

But one coworker said "You look less AIDS-Y now." Mind you, no one at work knows. They just know I was in the hospital for "something."
When he said that, I was a mixture of shocked and hurt. But I hid it and went along with it.

I'm sure remarks like that will sting for a while.

I'm not sure how you got blocked. I added you to my buddy list and you a PM. Hopefully that fixes it!
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 09, 2017, 05:08:16 pm


      ojo      HELLO LEFTY...I'M GLAD YOU ARE FEELING BETTER DAY BY DAY, PRETTY SOON YOU WILL BE BACK TO NORMAL...ABOUT THAT IGNORANT COWORKER, DON'T LET HIS COMMENT GET TO YOU, I'M SURE NOBODY KNOWS ABOUT YOUR STATUS.

OK, I WILL TRY TO SEND YOU A PM, JUST TO CHECK IF IT WORKS...AGAIN, HAPPY FOR YOU...HUGS                                                                                         ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: Orez on May 09, 2017, 06:41:17 pm
Lefty,

Good to see you are bouncing back.  I was diagnosed a year ago with VL 8329600, yup that not a typo it was really that high.  For almost two months I was like in a dream staring out into a world that does not see me.  Periodically the emotion would swell in me and then the tears start flowing (never in public).  I Started with Stribild because at the time Genvoya was still new on the market.  Stribild and me did not get along.  Major headaches which causes extreme nausea which interferred with me taking my meds.  On my next visit to IDS I requested he switch me to Genvoya. Even though he did not regular prescribe it at the time he was in agreement.  Genvoya gave me mild headaches and constantly faint like I could pass out at anytime.  Yes the diarrhea comes and goes but it is less often then when I first started meds.  Now most of the side effects are either gone or unnoticeable. You have just started your treatment and you are already seeing improvement.  You will most like keep seeing improvements over time.

You are still 100% who you were before your diagnosis.  I felt much the same as you when I first found out.  One thing I know about me before and after is I still treat people around me with love and respect.  Since that has not changed I know I am still the same person I was before my diagnosis and so are you. I hung in there not knowing how I would and I am still going. You keep going, you will be fine.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on May 09, 2017, 07:20:35 pm
Holy cow Orez, 8 MILLION? And you still had a high cd4? It only took a vl of 800,000 to knock me down to 8  :(
It's great to see Stribild annihilated all that in 3 months time. Hopefully Genvoya is even quicker. I'm really worried about how fast my immune system will rebound. I've got a long way to go.
Title: Re: Is there a light at the end of the tunnel?
Post by: Orez on May 09, 2017, 08:07:45 pm
Lefty,

Everyones body is different so you can't really compare with others how your CD4 will recover.  You had other issues at the time so that could be something to consider.  It may be for me that I eat half way healthy before and still do, not saying you don't.  You will have a better idea of what to expect ahead when you have follow up test and see your IDS.  Keep in mind the first follow up will let you know if it is working but the second follow up should for me was more helpful as I could see a positive trend.  Just the first two tests is hard to see what trend can be expected.  Just take your meds regularly and eat as healthy as you can (I could do better eating healthy).  Fluctuation is normal in results and as long as the trend itself keeps moving in a positive direction you will be fine.  I too was scared when first diagnosed that I would catch something because I didn't know anything about HIV outside it was bad.  I was so scared of catching something I didn't like people touching me and when people coughed I was furious when they did cover their mouth right.  I thought they would infect me for sure.  Well they didn't and I am still here.  I too was fearful and scared in the beginning but with working with my IDS and some self research (weeding out junk post on web) I am much more calm and stable mentally.  For me in the beginning HIV was a big deal now after a year on meds and knowledge gained HIV does not seem very big anymore.  I just went to my first group last week.  Please keep us updated on your progress.
Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on May 10, 2017, 01:55:51 am
I'm really worried about how fast my immune system will rebound. I've got a long way to go.

Glad to hear your getting better and doing much better. Things take time you know. As for your immune system i presuming you mean CD4?

Well its not a measurement of how healthy your immune system is and its just a snapshot result, even under the HIV negative population its between 500 - 1200 ish and differs from person to person. You could be perfectly healthy with 200 and sick as a dog with a 1000, so less focus on them and instead just focus on what does matter and you can control, Taking your meds, healing and living your life  ;)

Jim

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
https://www.poz.com/basics/hiv-basics/understanding-lab-work-blood-tests
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 10, 2017, 05:00:21 pm
Holy cow Orez, 8 MILLION? And you still had a high cd4? It only took a vl of 800,000 to knock me down to 8  :(
It's great to see Stribild annihilated all that in 3 months time. Hopefully Genvoya is even quicker. I'm really worried about how fast my immune system will rebound. I've got a long way to go.

      OJO      HELLO LEFTY

AS JIM JUST TOLD YOU, EVERYBODY IS DIFFERENT, YOU DON'T WANT TO KNOW HOW LONG TOOK ME TO GET UD...ONE THING IS FOR SURE, DOESN'T MATTER HOW LONG WILL TAKE YOU TO WHERE YOU WANT TO BE, EVENTUALLY, YOU WILL BE THERE. SOME PEOPLE TAKE A COUPLE OF MONTHS, OTHERS LONGER, BUT YOU WILL BE THERE...TRY TO RELAX, KEEP YOURSELF BUSY, STAY AWAY FROM THESE FORUMS IF WE MAKE YOU MORE SCARED...YOU ARE NOT ALONE ANYMORE, HANG IN THERE...CYBER HUGS                   OJO

PS. I GUESS YOU DIDN'T GET MY PM, HMMM
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on May 11, 2017, 04:51:41 pm
Thanks Tonny

These forums are a big help. I still don't know why I'm not receiving your PM. I don't even know how to find my blocked list to see if you got blocked by accident.

I'm definitely keeping myself busy, mostly with work and side projects (fixing up my apartment, taking some computer classes, etc..)

It helps to distract me.
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 11, 2017, 08:45:22 pm

       OJO       HELLO LEFTY...I'M GLAD YOU ARE KEEPING YOURSELF BUSY, THAT WAY, YOU ARE NOT THINKING ABOUT THE BUG...JUST IN CASE you finish fixing up your apartment, and have some free time, you can always come  do some fixing up in my house, you will feel even better cause you will be helping a legally blind guy, lol.

about the pms, i'm an old timer on here, and i didn't even know you could block people, i could've used that option a long time ago, lol...just kidding....maybe somebody who knows about the subject, would be kind enough to help us out with this situation...hang in there, you are on your way to see the light at the end of this dark tunnel...cyber hugs                                                                                      ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: JosephP on May 20, 2017, 10:10:03 pm
Hey lefty, As you have found out, there is, indeed, light at the end of the tunnel! I am glad you are getting better and Genvoya is really your miracle drug. I never had any problems with it or its sibling, Stribild. I take it with dinner thinking of changing to lunch time just because is easier. Dinners seem to be complicated affairs..  Keep on going... Keep adhering to your meds and you will be fine..  ;) ;) ;)
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on May 21, 2017, 01:27:28 pm
Hey Joseph!

Yeah I switched the time I take it to lunch time as well. I don't have any side effects, and I don't want to keep rushing home after work to scarf down some food and take it. Lunch time is much more convenient. I carry a small pill pack (looks like a locket only a little deeper) in my pocket, with Genvoya, a multivitamin, my allergy pill, and a probiotic, with a "mothership" weekly pill box in my bag, just incase something happens and I lose the pill pack.

Most recent appointment with my IDS was last week. They only took a CBC and a test to check the spornox levels in my blood. She said everything looks good, but I'm still anemic (given how far I've got to bounce back I'm not surprised). She said eventually that will resolve, and to make sure my multivitamin has iron in it. (My last one didn't, so I bought a new one.)

Sometime in early June will be my first VL/CD4 since my diagnosis. IDS thinks the results will be good. I'm anxious as always.
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on May 21, 2017, 04:25:38 pm


        OJO       HELLO LEFTY

IT SEEMS THAT YOU ARE DOING BETTER, WHICH I'M VERY HAPPY FOR YOU...LUCKY GUYS, A PILL A DAY, GRRR!!!, LOL...YOU WILL SEE GOOD NUMBERS NEXT VISIT TO THE VAMPIRE, JUST KEEP TAKING YOUR PILL AS PRESCRIBED, YOU ARE ON YOUR WAY TO COMPLETE RECOVERY...BTW, I REPLIED TO YOUR PM, NO ANSWER, HMMMM???, I GUESS NOBODY ON HERE WANTS TO HELP US RESOLVE THIS PROBLEM  :(...ANYWAY, BEST OF LUCK AND KEEP US POSTED, WE WANT TO CELEBRATE WITH YOU THE BIG UD RESULT...CYBER HUG                                                        OJO

PS, MAYBE YOU WANT TO ASK ONE OF THE MODERATOR ABOUT THE "BLOCK" THING
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on June 12, 2017, 10:07:10 pm
Hey all just giving an update.

Got my first labs since my diagnosis
Timeline:
March 29 - VL 820,000 CD4 8
April 17 - Started Genvoya, Bactrim, Azithromycin, Sporanox
June 09 - VL 100 , CD 42

I'm very happy about my VL, kind of upset about my CD4. I guess I had a fantasy of being UD and 200+ after less than two months of treatment. Ridiculous I know :P. I just want to hurry up and be over that 200 CD4 threshold.
Title: Re: Is there a light at the end of the tunnel?
Post by: Ptrk3 on June 13, 2017, 12:19:42 am
Congratulations on your significant viral load reduction!  That's a huge reduction.

You will be fine.  Your CD4's will recover.  It just takes time.

Keep to your antiretroviral regimen (and related prophylactic medications) and all will be well.
Title: Re: Is there a light at the end of the tunnel?
Post by: paintedroom on June 13, 2017, 03:52:02 am
Great news Lefty. :)

We share the disappointment in cd4`s - my nadir of 50..after 3 months on meds 193.I gave bloods again 2 weeks ago and haven`t rung in to find out the new numbers.As they say around here,it`s not the only measure of health,it`s how you feel and being UD, which you will in a matter of weeks.

I think i`m a slow riser so i decided to quit drinking and having a social smoke(which amounted to a bottle of red on the weekend..and a half sometimes) and clean up my diet.. and of course regular exercise.I guess the only way i will have peace of mind is to do everything in my power to enable my cd4`s climb above 200 and stay there.

The main thing is that you are moving,most certainly,in the right direction.Stay strong and healthy,P.
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on June 13, 2017, 07:18:06 am
You go Lefty !

Those are some seriously good numbers in short period period of 2 months  :)
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on June 13, 2017, 03:44:59 pm

          ojo        Hello Lefty, I guess you got a "300" with your med, excelent number, I'm sure you are already UD by now...Your "soldiers", yhey just fought and defeated (almost) the enemy, (the virus), they are all in the process of recovering, it will take time tho, but now, that there is not enemy to fight against, they will be able to recover and start multiplicating like bunnies...congratulations and be patient, just keep doing what you have been doing...cyber hugs                                                          ojo

@psintedroom...my dear friend, good things come to those who wait...I'm sure you are over that treshold and we will celebrate with wine...You do not have to change drastrically your life in order to get an increase of your cd4, tho, living a healthier life is ok too...huge ciber hug on your way...If I come to visit and you aren't drinking anymore, who is going to drink with me?  ;(
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on June 14, 2017, 07:32:34 pm
Congratulations on your significant viral load reduction!  That's a huge reduction.

You go Lefty !
Those are some seriously good numbers in short period period of 2 months  :)

Thanks guys. It's amazing that all that VL got wiped out in less than two months.

Great news Lefty. :)

I think i`m a slow riser so i decided to quit drinking and having a social smoke(which amounted to a bottle of red on the weekend..and a half sometimes) and clean up my diet.. and of course regular exercise.I guess the only way i will have peace of mind is to do everything in my power to enable my cd4`s climb above 200 and stay there.

Luckily i don't smoke or drink, but my diet has been "liberal" lately to say the least. I've eaten whole grains yogurts fruits one meal, fried chicken sandwiches soda and ice cream the next lol...

          ojo        Hello Lefty, I guess you got a "300" with your med, excelent number, I'm sure you are already UD by now...Your "soldiers", yhey just fought and defeated (almost) the enemy, (the virus), they are all in the process of recovering, it will take time tho, but now, that there is not enemy to fight against, they will be able to recover and start multiplicating like bunnies...congratulations and be patient, just keep doing what you have been doing...cyber hugs                                                          ojo
Thanks Tonny :) sweet as always "cyber hugs" hope you're doing well
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on June 26, 2017, 04:36:16 am
Hey guys,

I have a question about some symptoms I'm having.

I'm getting a strange breakout of itchy bumps on my face and arms.
Around the temple, above my eyebrows, on my cheekbone below my eye, on my jaw line, and on my upper/outer arms are pretty much the only areas. My eyelids seem itchy as well.

I was wondering if anyone has experienced something similar. I want to pinpoint the cause (maybe the bactrim?)

I'm taking azithromycin, bactrim, itraconazole, genvoya

It's frustrating trying to figure out if it's my body trying to fight something, or if it's medicine.
Title: Re: Is there a light at the end of the tunnel?
Post by: paintedroom on June 26, 2017, 06:14:10 am
Hey again Lefty,

Well i was put on bactrim as well and got a ferocious rash all over my feet..i was spared the face thankfully.I used that 1% steroid cream and it helped control it somewhat,so i could put a pair of socks on.It disappeared as i got stronger.
Bactrim is known to give various rashes and skin reactions so that may well be it.The curse of this thingy is the forever watchful forensic inspections and the ready panic that sometimes attends.

Anyway,as we all know, a Doctors visit is the only way to really know..or maybe some other member here knows better.My bet is it`s the bactrim.

P.

Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on June 26, 2017, 09:00:39 am
Hey Lefty, I was on a Bactrim IV while in the hospital in 95. I can't remember for how long but it was at least over a week before I was switched to oral doses.

Several weeks after I was home I was still on high doses and out of the blue I developed a nasty rash. It was from the Bactrim, I developed an allergy to it and am still allergic to all Sulfa drugs to this day.

See your doctor if you can or at least call, I was switched to Dapsone and had no problems tolerating it.

Wade
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on June 26, 2017, 04:22:45 pm


         ojo       Hello my good friend lefty...well, I guess you have to talk to your doctor about this situation...are you staying away from the sun's rays?, does it feel like burning?...azythromicin and bactrim can cause this kind of symptoms if you are under the sun a lot...I had the same thing when taking zithromax, I'm allergic to Bactrim and sulfas too (hives)..please check with your doctor, I hope you find out what the problem is, I know what you mean feeling frustrated no knowing the cause...cyber hugs      ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on July 22, 2017, 01:08:15 pm
Just an update on my latest numbers:

Apr 1 - CD4=8 , VL=820,000
June 9 - CD4 = 42 (3%) , VL = 100
July 17 - CD4 = 57 (4%) , VL = 53

Well I'm happy things aren't worse, but I guess my body is wanting to take its sweet little time to get where it needs to be....  ::)
Title: Re: Is there a light at the end of the tunnel?
Post by: Ptrk3 on July 22, 2017, 01:15:54 pm
Congratulations on your continuing progress!  Everything is moving in the right direction.  Keep up the good work.
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on July 22, 2017, 04:22:46 pm


       ojo       Hello my dear "blocker" friend, how nice to hear from you again...I'm glad you are doing good, slowly but in the right direction, remember, your initial cd4 were too low, so your body is recovering little by little. Just keep doing what you have been doing, blocking me, lol...Is always nice to hear back from members like you, for some reason, I like you, eventhough you blocked me form the PM thing, hahahh, Just teasing you...please let us know how things keep going in your life. Remember that you have to take care of you for a while, washing your hands often help...wishing you the beastas always...hugs                                                                                 ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: JosephP on July 22, 2017, 06:46:04 pm
Holy cow Orez, 8 MILLION? And you still had a high cd4? It only took a vl of 800,000 to knock me down to 8  :(
It's great to see Stribild annihilated all that in 3 months time. Hopefully Genvoya is even quicker. I'm really worried about how fast my immune system will rebound. I've got a long way to go.

Yes, wow... 8 million and great cd4! Me like lefty was knocked to 198 (yeah... two points below for Dr. to check the 'AIDS' box and report me to Health Department!!!) by a miserable count of 78K!!! I started on Stribild and two months later I was UD! Never had a problem with meds.. I got switched to Genvoya because of its easiness on liver and haven't had any problems.. I was scared to switch! What if this one doesn't work? What then?
And your immune system will recover and, although, we still have the 'bug' you will feel better!
Title: Re: Is there a light at the end of the tunnel?
Post by: JosephP on July 22, 2017, 06:49:15 pm
Just an update on my latest numbers:

Apr 1 - CD4=8 , VL=820,000
June 9 - CD4 = 42 (3%) , VL = 100
July 17 - CD4 = 57 (4%) , VL = 53

Well I'm happy things aren't worse, but I guess my body is wanting to take its sweet little time to get where it needs to be....  ::)


Going the right direction is the point here!
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on July 23, 2017, 09:35:52 am

       ojo       Hello my dear "blocker" friend, how nice to hear from you again...I'm glad you are doing good, slowly but in the right direction, remember, your initial cd4 were too low, so your body is recovering little by little. Just keep doing what you have been doing, blocking me, lol...Is always nice to hear back from members like you, for some reason, I like you, eventhough you blocked me form the PM thing, hahahh, Just teasing you...please let us know how things keep going in your life. Remember that you have to take care of you for a while, washing your hands often help...wishing you the beastas always...hugs                                                                                 ojo

Hey Tonny! *hug*
I swear I didn't block you, at least intentionally lol. I've been trying to figure out why I'm not getting your PM's, I even messaged Jim about it!

I've been feeling okay. I do need to take better care of myself though. I've been eating lots of unhealthy food lately.. I've upped the soda and the sweets, and lessened the fruits and vegetables. I guess I can't complain about my body given the stuff I'm putting in it :P

Congratulations on your continuing progress!  Everything is moving in the right direction.  Keep up the good work.

Thanks Patrick :)
Going the right direction is the point here!
Yeh I guess that's all that matters. I wish there was a NOS button or a turbo to speed it up  ;D
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on September 19, 2017, 05:03:14 pm
Well I got my most recent lab results today... itís been two months so I was really hoping for good news and a nice jump in numbers.... didnít get that at all...

My CD4 stayed the same at 57 and my VL actually went up to 130...

Iím not sure what to do as I have been 100% adherent.

Iím trying to stay positive and not get discouraged... but this feels a little like a knife in the heart  :'(
Title: Re: Is there a light at the end of the tunnel?
Post by: Ptrk3 on September 19, 2017, 09:37:55 pm
Your viral load is much lower than when you were first diagnosed, so things are going/remain much better.  Sometime these things do take time.  Very likely, your viral load--which, really, would have been considered undetectable not that long ago--will be undetectable by your next blood test.

It does take time, too, for the CD4 count to rise.  Do not be discouraged.  Keep to your regimen and continue to work with your healthcare provider.

You will be fine, truly.
Title: Re: Is there a light at the end of the tunnel?
Post by: lightalltheway on September 20, 2017, 01:44:44 pm
Lefty,

I have spent all my evening reading your posts and following up with your case. I really feel your pain and all the suffering that you are going into, rest assured there is a BRIGHT light at the end of the tunnel.

Do not worry about a minimum increase in your VL because it could be due viral blips which can happen due several reasons. Simple one: the body is fighting a minor infection. A better clear idea will be within your next lab results. I am sure your doctor said so too.

in cite of your cd4 count, please don't stress much about it. It will take time to recover and increase, gradually and slowly. A reading of cd4 count is not an actual one. CD4 test results may vary for several reasons such as stress, sickness, infection, sport, and the time of the day (AM, PM). It is advised to look at the cd4 percentage and over cd4 trend through several tests. I say this out of experience.

What matter is you feel ok and healthy, try to stay focused on adapting to healthy life attitudes. I read that you are a gym guy, how is it now? Maybe it is the right time to go back ..

Finally, you will very soon be UN, the virus will be so little to the extend that it wont do any harm to your body and that's the start of a great victory.

I really hope you will read my message with both, your heart and your mind, sending you my wishes and light all the way.

Prince
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on September 20, 2017, 01:58:05 pm


       ojo       Hello Lefty "blocker"...it took a long time for your cd4 to get where it is, so, it will take awhile to recover, try to be calmed...your med is working, let's wait and see your next blood work results, you will see that you are going to be UD,,,now that you are positive, you got to be positive...hugs and keep us posted                       ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on September 21, 2017, 01:48:54 pm


      ojo      Hello Lefty...I got your PM, and I replied to it. I hope you got it...hugs
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on September 21, 2017, 05:35:58 pm
Your viral load is much lower than when you were first diagnosed, so things are going/remain much better.  Sometime these things do take time.  Very likely, your viral load--which, really, would have been considered undetectable not that long ago--will be undetectable by your next blood test.

It does take time, too, for the CD4 count to rise.  Do not be discouraged.  Keep to your regimen and continue to work with your healthcare provider.

You will be fine, truly.

Thank you for your encouragement Patrick. I'm an impatient person who likes instant progress, especially when it comes to my health. I guess I have to change my expectations when it comes to this..


I really hope you will read my message with both, your heart and your mind, sending you my wishes and light all the way.

Prince

Thanks Prince. I do feel like my body is fighting something. I have a headache and nasal congestion, so possibly a viral sinus infection. Maybe that affected my numbers a bit.

I am back in bowling leagues.. 4 of them actually.. so I've been pretty active. That also means I'm around a lot of people so more chances I'm around someone who's sick  :P


      ojo      Hello Lefty...I got your PM, and I replied to it. I hope you got it...hugs

Tonny it looks like I can PM you, but you can't PM me since I didn't receive your reply. I will get to the bottom of this!
Thank you always for you warm words of encouragement  :)
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on October 23, 2017, 10:35:54 pm
got my 3 week lab results (my IDS wanted to do them quick just to make sure I'm not having treatment failure, since my CD4 was "stuck" for 2 months.

Well it went up a bit... to 63 (5%)

VL dropped back to 100 from 130.

So I guess it's working... just at a snail pace.  ::)
Title: Re: Is there a light at the end of the tunnel?
Post by: CaveyUK on November 01, 2017, 05:15:57 pm
It's a frustratingly stuttering start for sure, but hang on in there.

Your VL would have been UD a few years back, and your CD4 cells will take their time given the low start you had.

I'm sure like many things in life, you will see a breakthrough before you know it
Title: Re: Is there a light at the end of the tunnel?
Post by: kentfrat1783 on November 01, 2017, 05:55:27 pm
Hi,

I'm with you.  My numbers are taking time to adjust as well.  I'm just waiting for next month to see where my numbers will be at. 

Some of us are just the lucky ones I guess.  Just trying to be a little positive (no pun intended). 

I still remember others on here talking about don't pay attention to just a single data point but make sure to look at over time.  I do agree with them on that, but as work with financial statements I like looking at data points.  Just need to remember sometimes things go down but they always go back up. 

Just keep doing what you should do.

Kenneth
Title: Re: Is there a light at the end of the tunnel?
Post by: harleymc on November 02, 2017, 05:04:49 am
I really have no idea why your doctor is ordering blood tests so frequently, it seems like overkill to me and somthing that is leading to more patient stress.

Maybe you could tell your doctor you don't want to know the results unless a change in treatment is warranted.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on November 03, 2017, 09:42:04 am
Is a VL of 100 after 6 months worrisome? I see most people with UD and <50. Iím hoping the medicine knocks that last bit down, but what if it doesnít?
Thereís not enough VL for genotyping, but probably just enough to ensure my CD4ís stay to a crawl, if they move at all.
Title: Re: Is there a light at the end of the tunnel?
Post by: Jim Allen on November 03, 2017, 10:43:29 am
What does your HIV specialist say?

My two cents are some people are UD within weeks and others take months. I've seen some people switch treatment to knock the low level VL down if it takes a really long time, however as long as your HIV specialist is happy with the progress so should you be. 

Jim


https://www.poz.com/basics/hiv-basics/switching-hiv-treatment

Quote

How do I know if my treatment is not working?

You and your provider will need to keep an eye on your viral load and CD4 cell counts using routine blood tests. If any of the following occur, it might be possible that your drugs arenít working correctly:

If your viral load is not lower than 400 after 24 weeks (six months) of starting therapy. An early way to tell if a drug regimen is effective is to look for a 90 percent drop in viral load between two to eight weeks after starting therapy. For example, if your viral load starts off at 50,000 and drops to 5,000 after eight weeks, chances are good that your viral load will be less than 400 after six months of treatment.

If your viral load is not lower than 50 (ďundetectableĒ) after 48 weeks (almost a year) of starting therapy. Undetectable does not mean zeroóit means that your viral load is less than the minimum amount of virus the test can detect. Todayís more sensitive tests can measure 50 copies/mL or above, so undetectable means ďless than 50Ē. There are tests in existence that can detect HIV when there are less than 50 copies present, but they are commonly used for research purposes only.

If an undetectable viral load is detectable again. Some experts believe that a viral load that goes from being undetectable to detectable is a possible sign of treatment failure. But the results of one viral load test showing this jump is nothing to panic about. You should repeat the testóit may simply be an error or nothing more than a temporary ďblip.Ē If a second test confirms the results of the first test, it might be time to alter your regimen. If the blip is less than 400 copies, and only occurs once, this is not usually something to worry about. If virus is over 400 copies, however, or detectable on two tests in a row, this might be a sign that treatment is no longer working.
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on December 04, 2017, 01:57:14 pm
WHOOOOOOOOO!!!!!!!!!!!!!


Got my most recent labs today.

Viral Load is officially <20 !!!!!!!
I was worried that my medicine wasn't working, but it's kicking butt!
To anyone reading this in the future and starting Genvoya: DO NOT TAKE IT WITH A MULTIVITAMIN.

My CD4's were only 56 (3%), but I'm the midst of a fun spar with a cold virus, so I knew my CD4's would be some big babies. My CD3's were also 300+ higher than last test, and my CD8's were 250+ higher (fightin dat cold)

My CBC was good. No surprises. A whopping 15 HGB (better than 11 at diagnosis  ;D), normal RBC, almost normal WBC, Globulin was 2 points higher than normal range, but whatever.

Time to go play basketball.
Title: Re: Is there a light at the end of the tunnel?
Post by: paintedroom on December 05, 2017, 01:54:01 pm
Delighted for you Lefty  :) Ride that wave all the way through christmas. 8)
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on December 05, 2017, 02:12:19 pm


         ojo       hello my ex PM blocker friend, congratulaciones amidgo, i'm very happy for you, now that your soldiers (cd4) have no hiv virus to fight, with time, they will replicate like bunnies...i can imagine how you might feel after all those bas numbers...wishing you the best, keep us posted please...hugs all the way to the basketball court,,,take care                                                                            ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on December 06, 2017, 09:15:04 pm
Delighted for you Lefty  :) Ride that wave all the way through christmas. 8)
Thanks  8)


         ojo       hello my ex PM blocker friend, congratulaciones amidgo, i'm very happy for you, now that your soldiers (cd4) have no hiv virus to fight, with time, they will replicate like bunnies...i can imagine how you might feel after all those bas numbers...wishing you the best, keep us posted please...hugs all the way to the basketball court,,,take care                                                                            ojo

They can start replicating at annnnnnny time now  ;D
Seems like I have one of the slowest cd4 rises in the forums. Even 2Tcells rose faster.
Sucks to be me I guess. Iíll be under 100 forever.
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on December 07, 2017, 04:37:02 pm


        ojo       hello again lefty, i', sure you will be above 200 pretty soon, what it matters now it's that you are UD, if you knew how long it took me to get UD, and get over 200, i guess you will be happier to know that i was even worse than my buddy 2tcells, there for, worse than you, so, NO TE DESESPERES PEREZ, have patience and keep playing basketball and keep yoursels busy...please keep us posted...hugs amigo
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on December 09, 2017, 08:40:30 am
Lefty...!!!!

Great news :)

Be sure to eat when you take your meds, Genvoya requires food you know ;)

Hugs,

Wade
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on December 10, 2017, 01:40:02 am
Hey wade   ;D
Iíve gained 30 pounds since starting Genvoya. Iím eating like a pig!
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on December 10, 2017, 01:31:08 pm


        ojo       hello lefty, you better keep going to p;ay basketball...i wish i could gain weight, i eat a lot and never gain weight, but if i don't eat, i lose weight very quickly...hugs my friend                                                                                 ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: JosephP on December 13, 2017, 11:53:35 pm
WHOOOOOOOOO!!!!!!!!!!!!!


Got my most recent labs today.

Viral Load is officially <20 !!!!!!!
I was worried that my medicine wasn't working, but it's kicking butt!
To anyone reading this in the future and starting Genvoya: DO NOT TAKE IT WITH A MULTIVITAMIN.

My CD4's were only 56 (3%), but I'm the midst of a fun spar with a cold virus, so I knew my CD4's would be some big babies. My CD3's were also 300+ higher than last test, and my CD8's were 250+ higher (fightin dat cold)

My CBC was good. No surprises. A whopping 15 HGB (better than 11 at diagnosis  ;D), normal RBC, almost normal WBC, Globulin was 2 points higher than normal range, but whatever.

Time to go play basketball.


Nice! Nice! Nice!! Happy for you... Perserverance pays off!! Dust that basket ball and give it hell!
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on February 05, 2018, 05:26:41 pm
I guess Iíll give a quick update. Hey everyone. Itís been a while!

Been sick almost all of January with a nasty bug that caused bronchitis. But most of my friends caught the same bug and it was just as bad for them if not worse, so I guess my immune system kicked its ass just as good as anyone else  ;)

Didnít take any medicine for it besides an inhaler to help with wheezing and ate cough drops like candy. I guess my 56 CD4ís are Spartans.  ;D

Hope everyone else is handling the flu season well. *hugs*
Title: Re: Is there a light at the end of the tunnel?
Post by: Wade on February 06, 2018, 08:15:46 am
Hey there Lefty !

Good to hear from you, and sorry to hear you were sick.
The winter crud is everywhere, I went to my Drs appointment last week healthy and left with a nasty cold. I'm sure that's where I caught it, those places are full of sick people you know  ;D
Fool sitting next to me was sneezing and coughing all over me, wanted to hose his ass down with Lysol :o

Proof is in the pudding, your cd4s are kicking ass and glad you're feeling better ;)

Hugs,

Wade
Title: Re: Is there a light at the end of the tunnel?
Post by: LeftyBowler300 on March 20, 2018, 11:26:25 am
Got my cd4 count test done a couple days ago. Itís at 73. I swear I have a case for being the slowest riser with a suppressed viral load... this is frustrating...
Title: Re: Is there a light at the end of the tunnel?
Post by: Tonny2 on March 22, 2018, 01:32:55 pm

          ojo      Hello my friend...I'm sorry you are feeling frustrated, trust me, I know how you feel, it happened to me, although, you should feel blessed that your trearment is working, in my case, I had to wait twelve years to become UD. I guess, you are just like our good friend 2tcells, it took him a while to get a good increase of "soldiers", but I guess, it is more impotant to be UD, than to have a good number of soldiers, I also know, that, it would be better to have both, VL and CD4 levels with good numbers...hang in there my friend, good things come to those who wait, just see 2tcells, he didn't get good numbers but he, became a father...sending you a big frustating busting hug (not sure if that sentence  makes sense) on your way...you will be fine, keep getting 300 games                                                               ojo
Title: Re: Is there a light at the end of the tunnel?
Post by: Chel on March 23, 2018, 08:50:41 am
Hey LeftyBowler300 Good morning!

I was reading about your history and you battle with CD4.
For my experience, CD4 usually takes time to rise. I also had ups and downs...
I was very anxious about that my doctor haven't asked me for CD4 tests anymore. He told me as my VL is controlled, CD4 is going to rise slowly.
Stay strong. We all are going to win the battle against this Virus. I'm sure.

Hugs from Brazil. :)

Michel

Title: Re: Is there a light at the end of the tunnel?
Post by: terrymoore on November 21, 2021, 08:44:04 pm
Hi,
No offense to OP, can you please remove me from this thread?