Rocky First 5 months, other ppl suffer/overcome this?

[macaque3]

I'm wondering if other ppl have had such rocky courses and come through it OK. I'm also eager to hear how other ppl cope with circumstances like this. So here goes:

I was diagnosed HIV+ May 6 2009, in the midst of the acute viral syndrome. In fact, the day before the PCR came back + (6,660, CD4 525) I had a negative Elisa (antibody test). The doctors were of course all optimistic; they don't often catch someone this early in the first few weeks of infection, and they have relied on some fairly minimal data to suggest there's modest benefit to starting ARVs right away rather than wait as guidelines indicate, with CD4 going below 350, or more liberally 500. So i agreed, took Atripla and felt good on it, had undetectable VL a month into it. But then at 6 weeks, lived enzymes went way up, and i had to stop. [LFTs are now NL, three months later]. The ID doc (not my favorite) was fairly insistent that I try a second cocktail, because it would be a shame to miss this window of time when preservation of your gut immune system is thought to make a difference. This is when all hell broke loose. I agreed, a little gunshy, but started Raltegravir + Truvada. I developed a gradually worsening rash, worst of all on my scrotum (which started a little before Raltegravir I realized) but then all over. Got so bad while i was on vacation that I had to stop it--or risk having no scrotum at all... On vacation I did have some sex (first time after the Dx), was happy to get my mojo back, but was not the wisest in what i did/with whom. The last month has been hell... right after coming back had L ear sudden onset hearing loss and ringning, sensorineuornal according to the audiology. MRI of my head for that. Sores in my mouth have progressed to quite painful. I had to bed the ID doc for something to numb that. He was totally unfamiliar with those (?). The rash from August never went totally away, but came back with a vengeance 3 days ago. I mentioned to the ID doc it was there, that I was nervous about it, but it didn't really blossom til hours after that appt. He didn't even look at it. In fact said there's not much he could do for me if I wasn't on ARVs. Finally got so bad I got an urgent Derm appt (the trend is I'm being my own doctor, sometimes dangerous i think), and mentioned again the rash was on my palms and soles. The nice derm dr checked an RPR (only after she'd punch biopsied my leg to r/out T cell lymphoma). turns out it was syphilis. Today I insisted on getting the penicillin injection before the confirmatory test came back (maybe days later) because i looked like a leper (with measles) my whole life had come to a standstill. In some ways the syphilis was as bad as the HIV Dx. Feels somehow more embarassing. So my point is, that I've had to beg/insist/badger/cajole these doctors to do anything to really relieve my symptoms and find the true cause of these things rather than write it off. I already have appts with two other HIV docs, but feel as if i'd paid a big price for not bird-dogging these docs to be professional and investigate things. Is that all my responsibility?
This is not to mention the whole stigma i feel of not being lovable, now being REALLY toxic and unattractive. I'm going through this on my own, in a smallish university city, and pretty hopeless about finding other local folks who understand this. Other's have similar rocky beginning and live to tell about it? How'd you do it?
Thanks!
macaque3

[ruralguy]

Sure has been hard for you.  How did you know your liver enzymes went off badly?  Did you feel poorly or only find out in blood work?  I ask becuase I'm only 2.5 weeks into atripla doing well with it and, at this point, I really want it to work.

What a bummer to get syphllis in the midst of all this.  Just when you think it is ok to get back in the water, this bites you.  But at least you can leave that behind you fairly quickly. 

Hoping things get better for you!  Dave

[skeebo1969]

   I have to admit the going seems pretty rough for you, but most of us here chose to go off the beaten path so to answer your question, yes many of us here have had a rough start along with setbacks that keep you humbled and mortified all at the same time.

  Probably one of the hardest parts of this to deal with, and you made mention of it, is the stigma and the loneliness it can bring.  Will that ever go away?  That is solely up to you...  right now you are new to this and I just want you to know in time it can get better.   

  Sorry I don't have any advice for the medical aspects of what you are going through, however I am sure someone will chime in.  Just hang in there....  For some reason I sense you are a fighter anyways...

   

[mecch]

Yes it sounds like your ID doc is not an HIV specialist.  Anyway, even if he/she is the greatest expert in the world, the relationship isn't working if you have to push for every investigation.
I drew the line in the sand. I made my ID communicate with my Shrink, for example, something neither wanted to do but which quickly led to a much better HAART combo for me. 
I think you got to find the best possible communication with a doc, and then also politely insist on thorough treatment. If you are not getting what you think should be thorough, it is your right to EXPRESS this to the doc and ask for his/her rationale why he/she is doing it a different way.  Be prepared for any possible answer!!!!

Also, try not to feel embarrassed about HIV infection or and STD. 

Smoking is a delicious habit but risky and do you think smokers are all embarrassed when they need medical attention?  Motorcycle drivers?  People who eat delicious food from street vendors in the 3rd world?  etc etc etc.

[nyc_ev]

I had a doctor in the beginning I didn't like at all .... he didn't seem up to date on meds and also had a bad manner....didn't seem to actually "care" about me.  So I asked around and found one that I'm extremely comfortable with, and it has made all the difference in my attitude. 

That is great you are looking for other docs....don't feel bad about ditching any doctors you don't like, and also do a lot of research yourself and so you will be informed...and then keep trusting your instincts.  Ask questions and make sure you get a clear, understandable answer.

The bright side is that things will certainly get better, you're not alone, and you are lovable ...hang in there.  Wishing all the best for you.

[Inchlingblue]

Don't be scared off the meds because of those experiences.

The rash was probably not caused by Isentress (you mention how it started before you took it). Isentress is a very tolerable drug with very few side effects, if any, for most people. I've been on Isentress and Truvada for a few months now and I am not experiencing any side effects at all.

It's more likely the rash was due to the syphilis.

Hopefully you have not developed resistance to any of these drugs you've tried so far. There's definitely something to be said for treating very early, especially with advancements being made toward eradication of the reservoirs, which if it were to happen, would be easier to achieve with someone whose reservoirs are smaller. It's been shown that those who start treatment early have much smaller (and less varied) reservoirs.

I'm surprised you were not tested for syphilis at the same time as for the HIV, I thought this was common practice.

The American Academy of HIV medicine (www.aahivm.org) lists doctors who specialize in HIV, you can search by zip code for someone in your area. You can also start a thread on here asking others if they can recommend/suggest someone.

Even though I have not had a rocky beginning I do know others who have and I can assure you that with the proper medical care you are highly likely to do just fine.

[dtwpuck]

Yikes....

Let me say that being poz is pretty much a drag.  But syphilis... welll...  I feel your pain.   I had a lot of trouble with that little blessing and had a similar experience trying to get the doctors to treat it aggressively.   I got the weird feeling that they seemed to think my situation was 'interesting' rather than 'necessary to treat'.   Anyway . . .

It will get better.  There isn't a magic bullet to make it better.  But you will get there.
Syph goes away when treated, so don't worry...   HIV, well, there's a reason why this site is here.  You will have ups and downs.  At first, there will be a lot of downs.  Just hang in there.   

I am a firm believer that mental health is just as important as physical.  While being mentally together doesn't miraculously cure any disease, it does teach you to walk through the crucible of HIV.  So, here we are.  I've said a million times that learning about what you can control in life is extremely beneficial.  So, here I go again.  You cannot control what happens to you.  But you can control how you deal with it.   There is no right way to figure out what the right attitude is, or how to be an iconic, strong-while-facing-insurmountable-odds, person.   Only you can answer what is right for you.  But, I certainly hope you feel like there are people who will listen and try to offer the solace of 'having been there too'.
Peace,
Scott

[wow1969]

Morning .. I read your posting and could relate to parts of it .... I'm not an HIV expert and have only been dealing with this for 18 months so won't presume to give your advice ... But I will pass on something I'm learning that is helping me ...

Everyone comes to terms with things differently. I know I knew this before but there is a difference between what we know from an academic point of view and what we know from experience ... my experiences have opened up a whole new level of know in my life

I have found that some people have a meltdown immediately when they find they are HIV Poz and then seem to accept and move on; others have a meltdown later then accept and move on; some go into denial and stay there and others have a meltdown, accept and then have another meltdown and accept and then ...

One of my ex's did the meltdown and accept and is fine ... I'm jealous of that ... I'm more the of the cycle type ... I deal with things in stages and so I'm still dealling ....

What is important is not how you deal with it. What is important is that you deal with it. By taking steps. Being proactive. Fighting for your self. Reaching out to others. You are doing the right things. You will learn as you go what you need. I know I am.

Ok, maybe there was some advice in there LOL ... hope it wasn't too much.

Be kind to yourself :-)

[Stone]

I am so sorry to hear of your diagnosis and the difficulties you have faced in this short time.  What I can tell you as a health care professional is that you absoulutely have to stand up for yourself and be your own advocate.  The days of going in to see the good doctor and following all of his advice blindly are over.  I realize that it is hard and time consuming but you really should do your own research on things and find out the standards of care that are indicated for your condition.  That being said, make sure you are using reputable sites to obtain this information from as there is a lot of garbage on the net and your providers will be less likely to listen to you if you have substandard information.  Maybe you could also hook up with your local ASO for some assistance with this.  When there are issues with my brother and I don't feel that all of the tests are getting done that should be, I find the information backing up the request, print it out, explain it to my brother, and then he takes the printouts as well as the discussion to his doctor.  His doctor may balk a bit at times but he always listens and does the testing.    Good Luck

[macaque3]

thanks to you all. I just came back online after 2.5 days in the hospital,and was encouraged to read from ppl both new and not so newly into this. Yes, that rash was secondary syphilis, not Isentress. And the hearing loss I was having was likely otosyphilis. I did push for and got myself consults with ENT and Derm,who eventually together made the Dx of syphilis, and I was already doing the reading about neurosyphilis and hearing impacts. The ID doc (whom i've fired) only got excited when the other two lit a fire under his ass. I knew i was done with him. The hospitalzation at the Univ was hard, but i got a pretty thorough workup. I had to set limits when they couldn't get the spinal tap after several attempts, and wanted to repeat it. I felt good and self assured saying that nothing they found was going to change the intensive therapy (2 weeks of continuous IV penicillin on a pump at home) and the risks seemed not to justify the tests. Also had to push to get the to continue me on steroids and valtrex for a time, given some weak evidence in the ENT literature saying it COULD help hearing loss. Finally I felt like someone was listening to me, not belittling me (and i have to say, I'm a physician who was treated so miserably by that ID doc!).  The next debate will be over whether to restart raltegravir + Truvada although my VL still undetect and CD4 450+ off meds for almost 2 mos.  I may be more inclined to go back on than a few mos ago.
I too am someone who takes stuff in stages, can't just digest the whole thing at once and be done. So i expect that i'll have several little setbacks (or big) but also to recover. Yes, I am a fighter, and thank you guys for seeing that. At times when you're fighting alone, it's easy to forget that you could be winning the struggle in the long run even when it feels unbelievable.
thanks to you all. I wish you luck and strength in standing up for yourselves. Sometimes that means telling ppl who may be critical to you, but you don't have reassurance  about how they'll react in  advance. The risk can pay off i'm finding.
Best and hugs to all,
Larry