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Author Topic: First Post  (Read 70456 times)

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Offline tryingtostay

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Re: First Post
« Reply #100 on: May 22, 2014, 06:53:14 am »
Are you an expert on psychology and somatic symptoms? 

All the symptoms are really concerning and disagreeable, agreed.  I am repeating my question a third time - have you seen a psychologist, therapist or psychiatrist to get some expert opinion on these symptoms?

Maybe I've missed your answer, if so, I'm sorry.

No.  And No.  I'm just looking to get back to physical normality.  I'm familiar with depression in the experience from coming down off of a Vitamin D3 happy high and I don't think I'm in that depression state. I am also aware that I can get into depression swings for as long as 2 weeks after drinking alcohol.  I was never a drinker and haven't drank in maybe 10yrs and that if I did it was very infrequent. I was aware of the anxiety I would bring myself when reading stories of mortality on these forums but I haven't come close to that state in a while.  Things like the palpitations, swollen stomach and gut, swollen hands and feet with a slight bit of stinging, dizziness, forgetfulness, inflammation, stomach ulcers, etc.  These things are chronic too. I think Pittman's post # 63 made alot of sense in regards to my "ulcer" Link and the whole mucasal lining thing may go even further.  I've also noticed that I do not produce as much mucas from my chest anymore nor in my nasal passages.  The worst thing about all these stupid symptoms is that this GP doctor won't go ahead with meds because my VL in my first test was so low.  I am pressing him about possibly getting on Sevelamer Link but he doesn't seem to be listening to that.  If he doesn't I am seriously considering jumping off his ship.  No where have I read he's a specialist, he only has 3 yrs experience, and I think as a GP.
« Last Edit: May 22, 2014, 06:56:14 am by tryingtostay »

Offline mecch

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  • red pill? or blue pill?
Re: First Post
« Reply #101 on: May 22, 2014, 09:24:44 am »
What is the downside to seeing what a psychiatrist has to say?
My observation is that I have the feeling you are overly involved in speculations about your various distresses and medical issues, and that the doctors are under-involved. You yourself report that you feel the doctors are not treating you comprehensively and aggressively. So you may be right. Or, possible, your view on the situation does not confer with the reality that the experts have investigated.
As I said, this is just my feeling and of course I don't know you and I want to say I am not denying or belittling how unwell you feel.
I would say it would be quite interesting to have another expert on mind/body have a look.  You can always chalk it up afterwards as useless. But, it might be helpful, for treating the entirety of your malaise.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #102 on: May 22, 2014, 10:29:51 pm »
Thanks mecch.  You are seem to be a very smart and well versed guy.  I appreciate your sensitivity. 

I spoke with my case worker today.  We had a good talk.  I agreed to go see someone, she said she'll call me back with an appointment. 

Got an odd question. Can someone not on meds suppress the virus to an undetectable VL, or maintain it to a low range/level?  Say maybe like an elite controller?

Offline mecch

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Re: First Post
« Reply #103 on: May 22, 2014, 11:24:32 pm »
Yes "Elite Controllers/non progressors"  and "Slow Progressors".  Your doctor should be able to tell you if you are one or the other but it may take many months to decide cause you need to see the trend. 
But you already know that presently you have extremely low viral loads.  ;D  So cross your fingers maybe you won the genetic jackpot...

Good luck with the referral.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #104 on: May 22, 2014, 11:54:19 pm »
Thanks. 

I know not to get too excited about early numbers as there needs to be a trend for such things.  I keep waiting to see the results posted for my VL.  We'll see tomorrow and if I don't get them back it'll probably be on Monday or Tuesday.  Didn't realize this was a holiday weekend coming up.  If you ask me now if I trust my case worker I'll tell you after I get my results back.  While on the phone with her she was somehow able to check my results, I don't know why.  I asked her why they weren't posted yet, it may be due to my doctor being busy getting ready for his vacation.  But if what she says is true I don't understand why he wouldn't post them.  Let's hope I can continue to trust my case worker.

Offline tryingtostay

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Re: First Post
« Reply #105 on: May 28, 2014, 04:12:06 pm »
Living as Undetectable whether from meds, a weak strain, or a non progressor/elite controller, and having a good CD4 % and count, what health risks are we still susceptible to from this virus? 

 

Offline AusShep

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Re: First Post
« Reply #106 on: May 28, 2014, 05:15:37 pm »
Before you get all caught up in that, what was your latest VL results that you were waiting on?

Offline tryingtostay

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Re: First Post
« Reply #107 on: May 28, 2014, 07:22:11 pm »
I'm just trying to learn what to adjust my life around like eating habits for certain issues.  For example I've just purchased some apples to try out for my stomach.  I haven't ate an apple in probably over 15yrs but I've learned it helps the stomach out.  Also every time I drink carrot juice by Bolt House i feel a significant relaxation in my stomach.  So these are the types of things I want to look out for and understand and address.

It's only been my second test and I'm trying not to pay too much attention to it because I know there has to be a trend with readings.  I am not on any meds and my numbers are looking interesting.  My CD4 count dropped from 1730 to 1309 and my % rose from 41 to 42%.  My VL results are odd.  Maybe just a fluctuation, or maybe it was due to the Omeprezole.  My Viral Load "Detectable for HIV-1 RNA by PCR, <20 copies/mL, not quantifiable" 

Offline AusShep

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Re: First Post
« Reply #108 on: May 28, 2014, 07:47:00 pm »
So the sort of summary I have is you tested positive are not on meds, cd4 1730, VL 87. 
Then about 6 weeks later your cd4 is 1309 and VL undetectable?

Which protiens and antibodies were present on your western blot? 

If you are a controller, you may want to check out some of the studies, such as this one.  http://ragoninstitute.org/hivcontrollers/

There are still health risks the studies are trying to understand, in addition to vaccine/cure info.  For instance, long term immune activation in order to keep the virus suppressed in controllers leading to chronic inflammation, maybe increased cancers, heart disease, or other problems; they have studies comparing controllers on/off ARVs to try and see if these are really problems, etc.

Offline tryingtostay

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Re: First Post
« Reply #109 on: May 28, 2014, 10:52:30 pm »
So the sort of summary I have is you tested positive are not on meds, cd4 1730, VL 87. 
Then about 6 weeks later your cd4 is 1309 and VL undetectable?

Correct.  Also my percentage went from 41 to 42%

Which protiens and antibodies were present on your western blot?
 

That I don't know.  I just emailed my Doctor and asked him that question.  I'll find out hopefully in a day or two.  If not I see him on the 4th of next month and will find out.  Are there better results than others?

If you are a controller, you may want to check out some of the studies, such as this one.  http://ragoninstitute.org/hivcontrollers/

There are still health risks the studies are trying to understand, in addition to vaccine/cure info.  For instance, long term immune activation in order to keep the virus suppressed in controllers leading to chronic inflammation, maybe increased cancers, heart disease, or other problems; they have studies comparing controllers on/off ARVs to try and see if these are really problems, etc.

Ok.  I'll have to ask my doctor about it.

So basically people who are EC have more of a risk ending up in a hospital due to cardiovascular or other problems from complications, great :(
« Last Edit: May 28, 2014, 11:24:18 pm by tryingtostay »

Offline AusShep

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Re: First Post
« Reply #110 on: May 28, 2014, 11:26:42 pm »
That I don't know.  I just emailed my Doctor and asked him that question.  I'll find out hopefully in a day or two.  If not I see him on the 4th of next month and will find out.  Are there better results than others?


There have been studies on banding differences between slow and rapid progressors, such as absence of a strong p15 or p41 being more common in rapid progressors.  Mostly, just curios if you have the minimum bands or many.  I just have p41 and 120/160.  Most people have them all, or all but one.  Average disease progression seems slower in those with unusual patterns overall, but it's been a long time since I've read up on it.

...
So basically people who are EC have more of a risk ending up in a hospital due to cardiovascular or other problems from complications, great :(

It's one of the things they're looking at, no idea if it will be true or not.  You can always follow the cdc and take meds anyway...
« Last Edit: May 28, 2014, 11:29:09 pm by AusShep »

Offline tryingtostay

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Re: First Post
« Reply #111 on: May 28, 2014, 11:37:48 pm »


There have been studies on banding differences between slow and rapid progressors, such as absence of a strong p15 or p41 being more common in rapid progressors.  Mostly, just curios if you have the minimum bands or many.  I just have p41 and 120/160.  Most people have them all, or all but one.  Average disease progression seems slower in those with unusual patterns overall, but it's been a long time since I've read up on it.


Where would I read information/studies like this at?

Offline AusShep

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Re: First Post
« Reply #112 on: May 28, 2014, 11:55:22 pm »
Where would I read information/studies like this at?

Like I said, mostly just curious, but also making sure the confirmation was done given the low then UD VL. 
Giving these a quick read, the unusual patterns may be more for both rapid and slow progressors vs. normal, but just read the stats very quickly.  I really wouldn't read too much, or anything really, into it as far as your particular results.

Early Navy study
http://www.sciencedirect.com/science/article/pii/S1047279796000531
http://www.dtic.mil/dtic/tr/fulltext/u2/a458697.pdf

Indian study
http://ispub.com/IJID/6/2/8784
http://www.ncbi.nlm.nih.gov/pubmed/17050930


Offline tryingtostay

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Re: First Post
« Reply #113 on: May 30, 2014, 08:53:38 am »
One condition I constantly have and am curious if others do as-well is a constant inflammation feeling in the middle of my sternum accompanied with dizziness.  I don't know if it's a GI problem that's not healing correctly due to possibly HIV in the mucusal lining in that area or just normal inflammation due to this shitty virus.  Is this a normal thing with HIV?  It's making me more and more upset as the days continue on.

Offline tryingtostay

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Re: HIV associated neurocognitive disorder
« Reply #114 on: June 05, 2014, 06:42:57 pm »
I sometimes tend to shy away from people when I'm not up to "keeping up" with conversations, including posting here, although often I just don't really care if I appear to be a bit dizzy.

I know my ability to function has been slipping. It gets frustrating but if I focus on it it just gets me depressed. Better to go with the flow I guess and hope others understand. If not, oh well.

This is a reality I face and I feel the same way as what mitch777 has posted here.

I've had a steady dizziness since about 8-9 moths ago.  It seems to be progressing.  I was just about to type my age and it took me a second to realize I am a year older than I was going to post.  I have excellent numbers according to a Family Practitioner who specializes with HIV but I am starting to get curious about seeing if I can get to an ID doctor.  I was CD4 1730 @ 41% with a VL of 87, then this last test I shown a CD4 @ 1309 @ 42% & detectable but <20 copies without any meds.  It doesn't make any sense to have this brain fog with where I'm at with my numbers and recently dx'd. 

mitch777, I just read the link you posted Fat Marker cognitive decline...  Here is a little bit of interesting information.  I've been doing relatively fine with my brain fog/HAND until about 2hrs ago when I left the GI doctor.  Before I went to see this Dr I ate some BK fast food.  Classic Chicken Sandwich meal and fries, deal.  The brain fog just hit me pretty bad as I left the office.  I couldn't even remember where he told me to get my meds, and I am still wondering where I get my stool test kit as I don't see a "prescription" for it, only lab paper-work from it.  I can't remember wtf he told me.  Took me a long time to go through all the paperwork I had just to see if there was even a prescription for it.  So this garbage food binge I had may have had an effect on my noodle. 
« Last Edit: June 05, 2014, 06:51:49 pm by tryingtostay »

Offline tryingtostay

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Re: Re: HIV associated neurocognitive disorder
« Reply #115 on: June 05, 2014, 07:51:50 pm »
Remembering how my cognitive function use to be makes me feel I am locked in a prison that I can't get out of.  It's like looking out of a jail cell or as if I were dead when I remember my past cognitively functional healthy life.  I remember looking at these forums long before I was diagnosed and had a fear in the back of my head, that I didn't listen too.  I am feeling very down and regretful right now so excuse me for this post, sorry :(

Offline Ann

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Re: First Post
« Reply #116 on: June 06, 2014, 05:15:08 am »
Trying, I removed your two latest posts from a thread in the Mental Health section and put them here in your original thread.

You do NOT have HAND. Your issues have nothing to do with HAND or hiv. All of them can be attributed to stress and anxiety, but you don't want to hear that or investigate it properly.

Please do NOT continue to hijack other people's threads with your issues, issues that don't have anything to do with hiv - or if they do, it's only related through the stress and anxiety that hiv seems to cause you.

Yes, this is a warning.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline zach

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Re: First Post
« Reply #117 on: June 06, 2014, 09:25:26 am »
oh no?!?!?! ann!!!! I"VE GOT TWO OF THEM!!!!!   ;D

i dunno what turn this thread took, must read later. wtf is hand?

Offline Ann

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Re: First Post
« Reply #118 on: June 06, 2014, 02:49:39 pm »

wtf is hand?
 

HAND = Hiv Associated Neurocognitive Disorder. There's currently a thread in the Mental Health section started by one of our members who has been diagnosed with it. :-\
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline tryingtostay

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Re: First Post
« Reply #119 on: June 09, 2014, 07:30:25 pm »
How has everyone been doing? 

Me, I'm alright  :-\.  Just taking it day by day.  Moment by moment. 

Offline absopozilutely

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Re: First Post
« Reply #120 on: June 11, 2014, 01:48:56 am »
How has everyone been doing? 

Me, I'm alright  :-\.  Just taking it day by day.  Moment by moment. 

Good! That's how you should take it! You're doing fine, say the serenity prayer a few times, and actually believe it. In fact, while writing this I just said it, it helps. It goes like this:
"God, Grant me the serenity to accept the things I cannot change, Courage to change the things that I can, and the wisdom to know the difference..." :) Glad you're doing better.

Always,

Abso!
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy
5/1/19 CD4 1100 VL still UD.

Offline eric48

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Re: First Post
« Reply #121 on: June 11, 2014, 10:41:24 am »
So basically people who are EC have more of a risk ending up in a hospital due to cardiovascular or other problems from complications, great :(

With regards to brain fog here is my observation (on self):

until April 1 day of Dx: Nothing Nothing nothing
From April 2 : next day: brain fog, visions, chills
Started Meds in June : brain fog events which have lasted about 3 three years. They are gone now. I have not have one in the last 6 months

So , in my case, not HIV related, not meds related (most likely)

What about keeping your eyes OFF the internet and Dr Google for a week or 2 ... ?

One thing that has help me too... When I was referred to a specialist (neurologist, ...) they always ask me why I have full insurrance coverage. I tell them HIV... Then, every little peanuts thing that they find, they say HIV related. Since 1 year, I have changed that: I say Diabetes (which I do not have)
and then everything becomes, by magic, diabetes - related

You need to put things in perspective

let's have one: a recent re-analyses of the Swiss Cohort confirms that, yes, HIVers have a higher risk of cancers. But he goes further and restrict his database to non-smokers, and since HIVer in Schweis are not millions he finds ... nothing

With the paucity of HIVers who, like yourself, have hardly any detectable virus, which is so rare, I am so jealous, they will always find an additionnal risk. Like a doubled risk of heart attack... Which means, on very small cohorts, that they had 2 where they where expecting one ... Big deal ! Doubled risk ? Yes 2 divided by 1!
Did they had a look at smoking status, VHC and other things ? No... The only thing they care is putting out some paper with some findings, so that their little group can receive fundings

Look... CD4 1000+ VL < 200 that means your immune system does n't give a shit about the virus. Not that you should neglect it yourself... But, yeah... Come down , land on earth and be happy to be the happy winner

Eric

NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline DodgerDawg

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Re: First Post
« Reply #122 on: June 13, 2014, 03:21:00 pm »
Dear Trying;

I love you! (well we're together, but not together). I actually thought I was sick! Rushed to the ER January 2014, diagnosed full blown AIDS, three AIDS OI's, emergency surgery one for upper chest tube, four days later emergency surgery for chest tube two, renal failure, sepsis, sepsis shock, three basil cell tumors one of which is my new best friend (thinking of naming it), on, and on and on... Oh spent 18 days in infectious ICU, another three weeks in a surgery recovery ward; CD4 count of 5, and a viral load of 1,800,000. Heck they told my family to make funeral arrangements! After reading this thread, I think I'm cured, at least of gory google gaggling (sp?).

In sunny southern California we have a saying: "DUDE IT COULD BE WORSE". Now that I'm feeling so much better, I'm going to the kitchen, prepare some fish tacos, and have some fine Mexican beers!

Take care, and thank you!  Kevin
January 2014 CD4 = 5      .03%  VL = 1,800,000
June      2014 CD4 = 206  .15%  VL =            48
January 2015 CD4  = 211  .13%  VL =            71
June      2015 CD4 = 155  .12%  VL =             UD
July       2015 CD4 = 148  .11%  VL =             48

Offline tryingtostay

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Re: First Post
« Reply #123 on: June 18, 2014, 10:11:27 am »
Thanks abso :)  Just doing things day by day.  Thankfully it's summer and I can get out and enjoy the weather.  Hate winter time.  Just being outside and doing things is very helpful.  It free's my mind from the silliness and other things.  I still wonder how I'll be down the road.  I have a few more questions for my Dr. 

eric48.  Thanks for reading my thread :)  I'm hoping these numbers turn into a trend and I don't need meds for a long time.  Just waiting to see how the numbers turn out.  I'm not too concerned over it right now which is good.  While I do see myself as fortunate in regards to medicating  I am dealing with troubles that I have never had before.  I guess I am still fortunate in regards to what others are going through.  I look at the research going on and see that they are approaching it in several different ways.  The first category that everyone seems to be hoping on is reducing the medicating from daily to infrequently.  They call it a functional cure.  Looks like the Calimmune study is one approach.  But for others like me what does that mean?  And then my group is more than likely not on the priority list.  I think for myself and others like myself the second category, our best hope is the Kick and Kill type strategies.  IMO I think the dosage amount of Romidepsin per patient may have been mis-judged.  A recent example of mis judging a dosage was in the case of the Little Couples Cancer Scare Another study I am hopeful about is Novel Approach to reactivating latent HIV  Anyways lets hope they find something soon so we can all live healthier lives. 

DodgerDawg.  Actually I never really was sick until Doctor Google told me I was!  Everything I looked up I had!  AMAZING!  Hehe ;)  I hope you are doing better, and enjoy that damn sunny weather out there! take care :)

So how is everyone doing, btw???

Offline thunter34

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Re: First Post
« Reply #124 on: June 18, 2014, 11:55:14 am »
So how is everyone doing, btw???

FAAAAAAAAAAAAAAAAAAABULOUS!

I am without my psyche pills, and currently going through the beginnings of a manic phase, so wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!
AIDS isn't for sissies.

Offline tryingtostay

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Re: First Post
« Reply #125 on: July 11, 2014, 05:15:36 am »
FAAAAAAAAAAAAAAAAAAABULOUS!

I am without my psyche pills, and currently going through the beginnings of a manic phase, so wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!

I'm very sorry to hear that.  Has things gotten any better as of late?


Not sure if anyone reads this thread any more but I am curious as to how some people get prescribed meds immediately after following dx?  For example I vaguely recall someone posting that the doctor started them on meds before finding out what meds work for his strain the best?  I understand there needs to be a reliable test of above 500 vl count to determine what meds work but these people seem to be getting meds before a reliable determination is made.  Am I missing something???

I'm curious mostly because I feel some neuropathy symptoms as well as a few other things, and wonder why wasn't I put on meds under the same conditions as others have been prescribed meds???  Again I understand a reliable test has to have > 500 VL to be determined but these other posters are saying they were immediately put on meds.  What difference in factors am I missing between my comparison?  The biggest that sticks out is my possible dismiss of their CD4 count being on the low side but I can recall stories where that wasn't an alarming factor.  Maybe the posters didn't include or write out exactly what happened along their timeline, hmm.  I don't know, it's just weird, and more so I'd like to put off any slowly progressing problems like the one's I am living with. 


Anyways, thanks if you are still around and listening.  Hope everyone has a wonderful weekend :)

Cheers

Offline Irish Eyes

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Re: First Post
« Reply #126 on: July 12, 2014, 03:48:08 pm »
Yes, we are all here.
I also wondered about those getting meds immediately.
My guess is that they didn't included all the details for a full and complete story.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43
11.26.2014      CD4 1350 33%
01.26.2015.     VL 27
01.26.2015      VL <20
06/03/2015      VL 28
06/03/2015      CD4 1135 42%
12/10/2015      VL 27
12/10/2015      CD4 1111 36% cd8+tcell 1058 34%
06/23/2016      VL 49
06/23/2016      CD4 1255 41% cd8+tcell 882 29%

Offline tryingtostay

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Re: First Post
« Reply #127 on: July 13, 2014, 09:25:41 am »
Yes, we are all here.
I also wondered about those getting meds immediately.
My guess is that they didn't included all the details for a full and complete story.

More than likely.  Hmm. 

I just wish I could start something as this numbness is spreading throughout my body more and more.  The back of my head is now constantly numb.  My concentration is getting worse I've also noticed.  I tried nutrition geared for neuropathy about 3 months ago and I noticed a burning through my body immediately upon starting it, then I read up on it and it's said to be common when the nerves are starting to heal.  It was obviously working but I stopped too soon and now the same nutrition doesn't help things out.  I just hope my nerves haven't reached the "dying back" state.  Can the HIV meds of today stop the progression of this neuropathy?


Offline tryingtostay

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Re: First Post
« Reply #128 on: July 25, 2014, 12:06:53 am »
I've gotten a referral to a Neurologist. 

Offline tryingtostay

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Re: First Post
« Reply #129 on: July 25, 2014, 04:23:56 pm »
Can meds clear HIV from the spinal fluid?

Offline Jeff G

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Re: First Post
« Reply #130 on: July 25, 2014, 05:02:57 pm »
Can meds clear HIV from the spinal fluid?

No ... They can't .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline tryingtostay

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Re: First Post
« Reply #131 on: July 25, 2014, 05:06:37 pm »

Offline tryingtostay

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Re: First Post
« Reply #132 on: September 07, 2014, 11:34:14 pm »
Got some labs back.  Still waiting on the VL.  There are a few things I don't get.  What is a CD3 + T Cell NO. - 3247  - lymphocytosis ?

Offline tryingtostay

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Re: First Post
« Reply #133 on: September 08, 2014, 07:21:28 pm »
Got some labs back.  Still waiting on the VL.  There are a few things I don't get.  What is a CD3 + T Cell NO. - 3247  - lymphocytosis ?

Does anyone have an idea what the CD3 + T Cell no means or should I ask somewhere else

Offline Jeff G

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Re: First Post
« Reply #134 on: September 08, 2014, 07:25:50 pm »
Here is a source to answer some of your questions http://www.aidsmeds.com/articles/Introduction_4702.shtml
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline tryingtostay

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Re: First Post
« Reply #135 on: September 08, 2014, 07:35:59 pm »
Here is a source to answer some of your questions http://www.aidsmeds.com/articles/Introduction_4702.shtml

Thanks Jeff.  I briefly went through it.  I didn't see any CD3 + T Cell NO. reference.  I'll ask my doctor about it.  It's just hard to communicate with him via email board, he usually never responds.  As it's looking so far my CD4 numbs are ok, 1655.  I'm assuming the VL will be low - Hopefully.  If it is then the little indicator of lymphocytosis will be what I'll want to look into, and possibly detoxing my lymphatic system.  I know it's not a cure for HIV but if it's the cause of my tired and dizziness then maybe I can get a little improvement here n there on it.  It would be a big improvement from my perspective. 

Offline Jeff G

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Re: First Post
« Reply #136 on: September 08, 2014, 07:38:58 pm »
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline tryingtostay

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Re: First Post
« Reply #137 on: September 08, 2014, 07:44:03 pm »
I googled and got this . http://www.ncbi.nlm.nih.gov/pubmed/22686509

uuUUUuu, yer googre fru is veddy veddy honorabru!  haha
« Last Edit: September 08, 2014, 07:49:53 pm by tryingtostay »

Offline BKKKevin

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Re: First Post
« Reply #138 on: September 08, 2014, 10:51:09 pm »
Are you taking vitamin supplements 2-3 times a day at the reccomendation of a doctor?... What effect do you think all those vitamins have on your liver, urinary track and stools?...

Offline tryingtostay

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Re: First Post
« Reply #139 on: September 08, 2014, 11:47:45 pm »
Are you taking vitamin supplements 2-3 times a day at the reccomendation of a doctor?... What effect do you think all those vitamins have on your liver, urinary track and stools?...

No I am not taking supplements 2-3 times a day at a doctors recommendation.

I assume you want to answer the second question by yourself so go ahead. 

Offline tryingtostay

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Re: First Post
« Reply #140 on: December 16, 2014, 01:18:41 pm »
Recent labs report my VL has changed and gone up, half way between 100-200.  No where near where others have had but it's enough to where I'm constantly weak and feel sick.  My CD4 is the highest it's been almost 1900s.  I'm battling this sick feeling everyday and daily I'm mentally in and out of a dark place.  I'm starting to experience Vertigo.  My liver ALT and AST numbers are above the normal.  My WBC is above normal.  My Lymphocytes, Eosinophils, and Basophils are also above normal.  I feel like I have a flu everyday.  Slightly feverish.  The usual symptoms are still with me and I'll write them down as I have made a list to bring to my new doctor come Feb. I enrolled in an Insurance plan so I will no longer be dealing with this health care I currently am with.  I might move up the start date to Jan.  I will be covered by Aetna Gold.  I have looked up and found a couple of ID doctors in my area that I will visit before I decide on a doctor. 

Anyways this journey sucks and I WISH I would of known about PreP 2yrs ago. 

Offline mecch

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Re: First Post
« Reply #141 on: December 16, 2014, 02:11:09 pm »
I hope you get a good doctor who will give you a diagnosis that you can believe and work with.
I would bet money that your malaises are not due to an active HIV infection but I am not a doc!  If an ID tells you it might be about HIV, then start treatment.
If an ID tells you its not HIV, then get an alternative diagnosis.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tryingtostay

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Re: First Post
« Reply #142 on: December 16, 2014, 02:28:21 pm »
I hope you get a good doctor who will give you a diagnosis that you can believe and work with.
I would bet money that your malaises are not due to an active HIV infection but I am not a doc!  If an ID tells you it might be about HIV, then start treatment.
If an ID tells you its not HIV, then get an alternative diagnosis.

Thanks mecch.  I most certainly will.  I was interested in getting an MRI or fMRI but with all the screw ups with the social worker from the Gastro visit, and then uncertainty with further tests like an MRI I decided to wait.  It will be one of the things I push for unless the doctor wants to discuss meds which I will be looking to talk about further with everyone on here.  I am still with my current health care doctor and have another blood drawl to look at my elevated liver numbers, right after the holidays. I'll be with him either till then end of the year or till the start of February in 2015. 

Good to hear from you, Have a Merry Christmas/Happy Holiday,

Cheers

Offline tryingtostay

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Re: First Post
« Reply #143 on: January 17, 2015, 08:29:14 am »
Just a little update from my early Dec. 2014 Labs

VL 151
CD3+ T CELL %    Range 60 - 89 %            Value 85    
CD3+ T CELL NO.    Range 958 - 2388 Cells/uL    Value 3730    H
CD4 PERCENTAGE    Range 34 - 61 %            Value 43    
CD4                            Range 533 - 1674 Cells/uL    Value 1895        H

CD4 COMMENT         Clinical interpretation of lymphocyte subsets must be
made with caution.





Offline zach

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Re: First Post
« Reply #144 on: January 17, 2015, 08:37:53 am »
i'm just a pincushion, with no clinical training

but i'll still cautiously interpret those numbers

i'm my best tony the tiger

their greeeeaaatttt!

how are you feeling? still tired? any progress on that?

Offline tryingtostay

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Re: First Post
« Reply #145 on: January 17, 2015, 09:19:38 am »
Hi Zach, I was wondering about you and how you were doing.  Good to see you, and still kickin it. 

Thanks for asking.  I'm doing better.  I think it may have been a touch of the flu, but otherwise it seems I get sick easily though.  Got on a plane for the holidays to do some family visiting to the west coast and I got a little dragged down again with something.  Wasn't jet lag.  I've been trying to maintain a little exercise during the day and I feel a little bit better afterwards.  I just am not nearly as active as I once was with work.  I exercise for maybe 15 minutes and fall asleep twenty minutes later.  The trick is not to over do it I guess.  I think I might get one of those weight vests and walk around the block or just wear it daily to keep my strength up.  Still have those lumps under my armpits and the doc discussed some options like an Ultra sound, or an X-Ray/CT scan but said the Xray comes with exposure to radiation.  I think he's waiting to see what I do when I get my insurance come Feb. 


How are thing with you?

 

Offline Tonny2

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Re: First Post
« Reply #146 on: January 18, 2015, 05:04:05 pm »
Hi Zach, I was wondering about you and how you were doing.  Good to see you, and still kickin it. 

Thanks for asking.  I'm doing better.  I think it may have been a touch of the flu, but otherwise it seems I get sick easily though.  Got on a plane for the holidays to do some family visiting to the west coast and I got a little dragged down again with something.  Wasn't jet lag.  I've been trying to maintain a little exercise during the day and I feel a little bit better afterwards.  I just am not nearly as active as I once was with work.  I exercise for maybe 15 minutes and fall asleep twenty minutes later.  The trick is not to over do it I guess.  I think I might get one of those weight vests and walk around the block or just wear it daily to keep my strength up.  Still have those lumps under my armpits and the doc discussed some options like an Ultra sound, or an X-Ray/CT scan but said the Xray comes with exposure to radiation.  I think he's waiting to see what I do when I get my insurance come Feb. 


How are thing with you?

     ojo    Hi tryintostay...I just wanted to say HI, hope everything goes well with you...hugs     ojo

Offline tryingtostay

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Re: First Post
« Reply #147 on: January 18, 2015, 06:07:55 pm »
     ojo    Hi tryintostay...I just wanted to say HI, hope everything goes well with you...hugs     ojo

Thanks for saying hello :)

How are you? How was vacation?

Offline Tonny2

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Re: First Post
« Reply #148 on: January 18, 2015, 09:08:43 pm »
Thanks for saying hello :)

How are you? How was vacation?

    ojo   Hi again...vacations went well, my vision still hanging in there, no a piate yet, lol...I posted my last numbers, my combo still working. still UD....thanks for asking and you too, hang in there, ok?..hugs    ojo

Offline tryingtostay

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Re: First Post
« Reply #149 on: January 19, 2015, 11:24:53 am »
    ojo   Hi again...vacations went well, my vision still hanging in there, no a piate yet, lol...I posted my last numbers, my combo still working. still UD....thanks for asking and you too, hang in there, ok?..hugs    ojo

Doin ok besides my usual issues, just wish my brain would work a little better

 


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