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Author Topic: ID vs. Shrink vs. Me? When is it a HAART side effect, when is it stress??  (Read 1044 times)

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Online mecch

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I previously posted to this same section on Oct 20.

My questions were - how much should one "bug" one's ID - cause I'm new to being HIV+ and to being treated. Also the question was motivated by feeling 10 weeks of perfection on HAART and then feeling some strange stuff.

I am posting again because I'd like some more feedback -- especially from the treatment experienced and knowledgeable folks here.

I've finally posted my labs below in my signature.  I seroconverted and then had high viral loads all summer. I am treated by a very pro ID.  I'm told he's one of better in all of Europe.  In August he said unfortunately I was one of the rare people who can't mount much of an immune response to HIV, so I got HAART.

I was really thrilled by my September labs.  99.9% reduction. My ID said great and see you in three months, December.

In October I started to feel a bit off, more like I felt in the Summer when I had such high viral load.

My October "feelings":  burning under the skin in my forearms.  Feeling cold, and feeling "chills" all day long (back, shoulders, scalp).  But no fever.  I felt a bit nauseous for a week but that since disappeared.  I don't have the energy I had in September.  Sometimes I just make it to the end of my day and then go home and lie in bed.  Like before I went on HAART. Well, not as bad. Before I went on Haart in August, I had for a few weeks, only a few hours of energy a day.

So I called back my ID. He said wait a week and call if there was a change.

I waited, and there was not much change but I felt not OK.  So I called him and saw him two weeks ago. He invited me in, examined me and said, no thrush, very normal lymph nodes, back to normal weight. Everything seems fine. I asked about the odd possibility of treatment failure, so early.

He said no, extremely unlikely, and I didn't have any signs of that. I asked about possibility of neuropathy so soon. He said no.  He said it was stress and told me to discuss with my shrink.  He refused to do any blood work. Said I was fine, in his opinion, and if I insisted on blood work, he wouldn't sign off to get it covered and it would be about 1000 bucks out of my pocket, cause insurance wouldnt pay.
So I decided to believe him, since he's such a big cheese, and since, afterall, his diagnosis (anxiety and stress is causing my symtoms) is better than then my two ideas!!

I called my shrink and saw her and asked her to treat me. She said I should double my anti-depressant Zoloft from 50 mg to 100. (50 is a minimum therapeutic dose.)  She also gave me an immediate chillout pill I could take after work or at night - Lorazepam - if i felt the need.

I called a reflexologist who used to work wonders and saw him. I describe the burning in my arms sensation and he said that was common from back tension. His treatment is VERY painful but very effective, he breaks the knots and pushes muscles back where they should be. He did his work and asked to see me again (which was today).

I chilled out and did my job but still, the weird pains continue.  I do feel completely stressed out. But I also feel like I felt before I went on HAART so I can't get this horrible fear out of my mind that somehow I already failed HAART and I need different drugs...

I also asked my ID and my Shrink to talk to each other, which they did last week (after i was examined by my ID).  Then i saw my shrink and she said well, try the new pills and see whats happens.

She's on holiday this week.  I still feel the burning.  And kind of gross in the evening, sometimes. I took the chill out pill sometimes and it chills me out, definately, but still I felt the burning in my arms, occassionally my legs.  I felt it all day Wednesday when i was in a very boring and irritating day-long conference. I start to feel all tense and horrible.

I guess I'm uptight that i have to be on HAART the rest of my life, and at least it would be nice to have a smooth ride and the last few weeks... not as smooth as HAART had started.

I called my ID a week after I saw him, so this makes this Tuesday, and said I felt the same. Despite the "psychotropes". 

(My shrink actually said to me that it was strange that the pills don't decrease the symptoms. So she said it is in her opinion, an unanswered question - the source of my symptoms.  Maybe stress. Maybe my HIV. Maybe my meds, Maybe something completely different.)  So I asked my ID about what the shrink had said - why dont the chill pills remove my symptoms, if the cause is anxiety.  He said he was sure it was stress and anxiety. I countered I never had anxiety symptoms like this before. I also asked why the chill pills dont work. He said, quote, your mind is stronger than the psychotropes. He refused to see me unless I had a fever or cramps.  I don't. 

I must say, however that last week, when he did see me, and refused to do blood work, he compromised and said he would reschedule my labs to the EARLIEST possible date according to the protocal and what insurance would permit.  Thats why I am now having labs in two weeks - mid November, and not December as was previously planned.

So, first I want to thank all those who posted such thoughtful comments to my last post.

http://forums.poz.com/index.php?topic=23780.0

I'm not sure I have much "immune reconstitution syndrome" going on, since I wasn't HIV+ very long, before I went on HAART. Just a few months.  But HIV did take a big toll on my CD4s in that time, and I guess it wrecked havoc on my gut.  My digestion is just fine and dandy however, so no obvious symptoms there.

Just this burning. And not so much zip, energy.  And fear.

So I saw my reflexologist again today and he worked even deeper.  He said I need to see him one more time, and then I absolutely must start working out - that building muscle strength was the only way I was going to fight the tension that would build up from emotional stress. He said emotions can wreck havoc on the muscles in the back and shoulders, and this could cause symtoms like I have.

I don't feel great that I didn't get what I wanted from my ID - blood work to reassure me.  I know thats kind of being a baby.  I dunno. Its such a freaking shock to be positive after all these years negative and then such a freaking shock to be told I can only survive with HIV meds. 

I still have in back of my mind that I'm failing HAART. 

If I felt fine, like I did in September, maybe I wouldn't feel like that? 

It seems to me that since I am kinda weird, with the no genetic defense, the HIV doc could "justify" monthly controls to the insurance company until I am undetectable.  I want to stick with him, cause hes supposed to be the best.

But I want to be checked by the best science to be sure I'm on the correct meds. etc. etc. etc.

And I want my shrink to perform perfect medicine and take away my anxiety.

I want I want I want.....

Anyway, thanks for listening and thanks to those who take the time to comment with their own experience.

I do count my blessings I have this doc, and these meds.. And never had and OIs or much of anything, except complete exhaustion during the summer.  And now suspect or false neuropathy. 

That is, I love the meds, if they are working...  A vicious circle of worry...
« Last Edit: November 06, 2008, 05:31:36 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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Re: ID vs. Shrink vs. Me? When is it a HAART side effect, when is it stress??
« Reply #1 on: November 06, 2008, 05:56:48 PM »
Erm, if the chill pills is 3 weeks in, side effect.

Take a jar of bugs, best or no

- matt
"The object is to be a well patient, not a good patient"

Online mecch

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Re: ID vs. Shrink vs. Me? When is it a HAART side effect, when is it stress??
« Reply #2 on: November 06, 2008, 06:06:26 PM »
Erm, if the chill pills is 3 weeks in, side effect.

Take a jar of bugs, best or no

- matt


Thanks matt. So you would say, HAART side effect?
And sorry to be dense but what does this mean: Take a jar of bugs, best or no...?? Huh?
Many thanks for your thoughts.
And anyway, as for the other question - so side effects yes, but HAART failure so quick - no?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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Re: ID vs. Shrink vs. Me? When is it a HAART side effect, when is it stress??
« Reply #3 on: November 06, 2008, 06:22:30 PM »
Yep HAART

I expect your doc wants to not change your combo til you get undetectable and then perhaps unless you have really enduring, typical side effects. He (or she maybe, hard to tell these days) has a point cos a different combo is a different set of problems.

It is important to give a combo time, and let your body recover, because unchecked HIV is basically cellular war, but on the other hand, trying sommat different now ain't gonna compromise your outcomes. And will settle the is it? isn't it? question.

The working out idea is a good one, and it is strange how exercise ameliorates these kind of stress symptoms.

See..it's hard to decide - try everything, but in the end if you think it's the combo, bug your doc big time. The chills you describe are odd. Don't sound like PN to me. But...I am suspecting the Sustiva cos my ex got these massive skin chills every day he took it.

Not a very scientific basis, eh?

But, personally, if I thought it was possibly an ARV I would not hesitate to bug etc.

- matt

"The object is to be a well patient, not a good patient"

Online mecch

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Re: ID vs. Shrink vs. Me? When is it a HAART side effect, when is it stress??
« Reply #4 on: November 06, 2008, 06:45:07 PM »
Hey thats the perfect description - skin chills. 
Well i like the sustiva dreams by my sixth sense says its sustiva "chills" too.
Roger wilco for the advice. I will chill as best as possible, and also continue to bug the ID about the skin chills.

One more question then - do you put any stock in the supplements/KPAX stuff to ward off ARV side effects?  I asked the ID, he said a waste of money.  I figured, yeah, if this combo isnt the best, I should politic for a different one, rather than tinker with one thats not the best.

A the best would be??? As of July I had zero resistance, so open slate.

Is Sustiva/Truvada really gold standard these days?  Damn if hes such a big cheese he should be able to put me on anything -- even the newest -- and get the insurance company to fork out for it.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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