Questions from a Treatment Newbie

[mecch]

Reading Jenny's post about nerves in early treatment made me want to ask a similar question.

I seroconverted in May. ID started me on Sustiva + Truvada in early August. I had 99.9% viral drop in my first lab tests, down almost 5 million to about 2,000, a couple of weeks ago.

1)  First side effects - meds???  I felt great from the second day of treatment until the middle of last week. Now I feel tingly in my arms.  I had really stiff joints for three days but that has resolved.  But I'm slightly nauseous feeling during the day...  I wonder if this is anxiety (?),  the HAART (?), or is it at all possible that I could be having a viral escape already?  My ID said I was standard success response and expects undetectable by about XMAS.  So I highly doubt viral escape. But I am really really nervous to have a success - since only HAART can fight my virus, i produce few if any antibodies naturally. Any thoughts? My ID is on holiday for a week, which leads to the next questions::

2)  How often is it appropriate to have labs during first year of HIV and also by chance first months being on HAART?  Last time I saw my doc he said I could wait until December - 3 months! But I'm not undetectable yet.  Now its just three weeks since my last doc appointment and labs, and I'm feeling a bit like I felt before I started HAART - "virally", kind of fluey.  But its not the flue because of the tingling in the arms. 

Also, how often is it appropriate to call the ID?  It seems I have called him about every 2 or 3rd week with a legitimate question, and he usually puts my mind at ease with a good answer and I don't need to see him. He has never said I call too much, by the way.

I was just wondering what questions one should be asking and how often??  We can ask questions here and some of you are so knowledgeable that helps. So how often to ask the ID??  Its a pretty nerve racking time.  I called two weeks ago because I suddenly had heavy dandruf, and never had that in my life. He was cool and said, no problem, its not dandruf, it a part of immune reconstitution and viral load drop and my skin would be turning over. 

I was just wondering if anyone else was thinking about this during their first few months on HAART - how often to see the doc and how often to call with a question --  cause I guess its natural to want see and hear all is going well, when the anxiety starts to rise... 

I think I'll feel much calmer when I arrive at undetectable, even if eventually I have to put up with HAART side effects, just knowing the medicine is working and I'm not dying will be quite reassuring..

[Assurbanipal]

Generally I'd recommend erring on the side of calling too often; after all a little embarrassment beats hospitalization.  (But I have to admit that I personally struggle with this -- and tend to keeping waiting just one more day to see if things resolve.  My doctors DO NOT like this.)

But more to the point it sounds like you have a good solid relationship with a highly professional ID doc.  So next time you call, perhaps you could have a targeted discussion as to whether you are calling too much or at about the right frequency (or too little)?  (S)He will probably welcome the fact that you want to be an active participant in getting the right level of care and be glad to provide guidance.

Hope everything turns out fine.
A

[BlueMoon]

Mecch, first of all congratulations on your initial results.  That's kicking viral ass.

It sounds like your doctor has you on a typical schedule.  My first test was either two or three weeks after beginning treatment, then every three months after.  For awhile I felt like I could get tested daily just so I could be reassured the improvement was continuing.  Now every three months is more than enough, and if I can get my CD4 count up and sustain it, then I'd like to extend the intervals to four or five months.

You may be able to get your non-urgent questions answered here, even if the answer is "better call your doctor about that".  I've asked several questions in the forums and got good responses.       

 

[bufguy]

My viral load was much lower at start of treatment, (47500), and I was retested at 6 weeks, (130), after another 6 weeks I was tested again, undetectable. This last time my doc didn't test anything except viral load. I will see him in 3-4 months.

[newt]

Well many questions

But I'm slightly nauseous feeling during the day

Could be the meds, could be your body needing food, ready to deal with food even. HIV fucks your gut, it will take time to be back to normal. Could also be worry. You might try peppermint tea or some ginger root in hot water. << ooh, newt sez something about alternative folk remedies... 

In the 1st year of treatment I would have labs done at 4-6 weeks after starting, then 3 months after then every 3-4 months, paying most attention to viral load.

I would (always) bug my doc as often as I feel like. it's his job to be bugged << no sniggering.

Yes, a viral load <50 or 40 is a great reassurance.

It is important to realise that the meds is strong and the toll of untreated HIV big, and it will take some time to adjust.

- matt

[mecch]

Thanks everyone.

I did call and bug my doc. He was on holiday this week but apparantly making rounds in the local clinic so he called me back.  He told me highly unlikely it is either the meds, or viral escape.  He went with the anxiety.  That's kind of a catch 22 because the ants in the skin feeling and fluey feeling was exactly what I felt when i had the multi-million viral load this summer, and they kept telling me it was anxiety and nerves, and then bingo, they treated me and it all disappeared.  But i guess the anxiety could be building up again.  I dunno, i have a creepy feeling still. I don't like being bounced back between the ID and the shrink.  The shrink says I'm doing well and don't seem so anxious. And the the ID says I'm doing well but its anxiety.

Maybe I have carpal tunnel in my arms from typing too much!

Thats for the tip on the mint tea. I have been drinking a lot of that since my seroconversion. It makes me feel better and I tested it with a new age pendulum and that told me it was great for my body.

I lost weight in the summer but seemed to put it all back on in my first 6 weeks on HAART.  I have been eating a LOT. 

The thing about the gut worries me. Since my body only dealt with HIV for about 3 months, i figure my gut was about the only organ/lymph destroyed. (Besides my spirit, which took a beating.)  But, I haven't had any digestion or bowel movement problems.  Would be nice if I could be spared that with successful HAART.  I read that recent "shit" thread in LTS, it was so graphic, I really felt upset for all you who have to put up with that...  I remember it from when my BF in the 80s had AIDS.  Everything ran right threw him.  But came out horribly transformed anyway.  I think that, and his depression about no hope, drove him to suicide. 

I guess I had put such serious challenges out of my mind for some many years, and thought that HAART fixed that up for most people.  Maybe reading that thread made me anxious.

I think I better take a breather, and work on my post grad some more.... Change the air.

Many thanks for all your support.

[Miss Philicia]

I read that recent "shit" thread in LTS, it was so graphic, I really felt upset for all you who have to put up with that...  I remember it from when my BF in the 80s had AIDS.  Everything ran right threw him.  But came out horribly transformed anyway.  I think that, and his depression about no hope, drove him to suicide. 

I guess I had put such serious challenges out of my mind for some many years, and thought that HAART fixed that up for most people.  Maybe reading that thread made me anxious.

I think I better take a breather, and work on my post grad some more.... Change the air.

Many thanks for all your support.

That's what you get for reading LTS threads.

Keep some context in mind if you wade in there -- for example, my viral load was not suppressed for 13 years (actually longer, as that 13 is while on meds -- make it more like 18 if we estimate when infected).  So my digestive tract must have been much more damaged than what you will find yourself being damaged... like a LOT.  Hence why I still take so much diarrhea medication, etc.  I would assume there are others in LTS like that as well.

Same thing goes for wading in there and reading stories about drug resistance.  I can explain why many in LTS have resistance issues and why you must likely will not, if you haven't figured this out yourself.

I guess the larger question is why you feel the need to go in there and frighten yourself.

[mecch]

Thats a good question. It actually has to do with how I navigate the site. Sometimes I just click into a Forum directly and then its always "living with" or "off topic".  But sometimes I click "show unread" and then i sometimes see posts that interest me, or posters I have followed, in other forums.  For intstance I saw that fellow with the student load nightmares post something with a quite worrying title in LTS so I went and posted something. 
In fact, now that you call attention to "where we read", I'm not sure where I read the long thread about "shit" problems. Now I think it might have been this actif one about the bottom who still gets the runs, and that was not in LTS!  But i remember in the thread there was one person who made a joke a bout putting a cork in it, and a few talked about wearing panty shields when it got bad, and what colour underwear was best, and thats not in the bottom's thread. Perhaps i was having a sustiva dream and the thread doesnt exist.

By the way, another reason I might occassionally read a LTS thread is because although I am a newbie to having HIV, i am an "oldie" for contact with people with HIV or AIDS.  So I supposed I could handle whatever I read.  I don't have so much ignorance.  But in fact, it is rather different now that I have my own fears...  And also I see that forgot things because it was so out of my life for so many years...

Another reason any newbie might occassionally read a LTS thread is because he/she doesnt want to be that uninformed or potentially insensitive person who does think --  oh well, "us" newbies can pop my one pill, and my experience has nothing to do with "them".  Us/them

But yours is a good question, and takes me back to my post here, and the idea that perhaps the ants in my arms are anxiety and I have to be careful not to add to that. 

Wish you all the best.

[Miss Philicia]

But yours is a good question, and takes me back to my post here, and the idea that perhaps the ants in my arms are anxiety and I have to be careful not to add to that. 

Wish you all the best.

You said you're going to a shrink, right?  Was this something you were doing pre-infection or did that commence afterwards?  How are the two of you addressing the anxiety issue, as you've brought this up repeatedly now?

As someone who developed an anxiety disorder ~5 years after my diagnosis I know the situation well, and will only state it's best to get a handle on this before it gets out of control.  The anxiety one gets after diagnosis is quite normal, and it's obviously situational based, but for some people it can fester (even when you think you're fine) and then suddenly surface out of control.  Personally I've found it to have many qualities that one reads about as regards PTSD.

Anyway, hopefully yours is just a more normal short-lived thing.

[mecch]

Started shrink summer of 2007 when i decided to leave my longterm bf.
Have previously done therapy two times in my life, about a year each time, usually it works fine.
Just stayed on with my therapist in May 2008 when I seroconverted and got the diagnosis.
ID sends notes to shrink. Shrink does not converse back to ID, but perhaps should.
Anxiety dealt with in standard talk therapy and lowdose anti-depressant which I went on in May. Also have a pill - lexotanil - I can take if I feel particularly anxious. Don't take it much. 
I read that Haart can reduce the concentrations of anti-depressants but I haven't "noticed". Also heard that Sustiva can increase depression, also haven't noticed that. Its more anxiety than depression.

I agree, for me its like PTSD - i rather often feel shocked that after all these years I seroconverted.

Thanks everyone for your input about your relationships with docs.  Its hard to figure out how much to bother the docs, but I do see the point that they work for us, sometimes I forget this.

[AndyArrow]

Mecch,

If your problems with your gut are still severe only now that your numbers are under control it could have to do with your immune system trying to rebuild itself.  You might want to look here or on The Body.com for articles about Immune Reconstitution.

AA