Im HIV positive and scared about whats happening to me
Nov 11, 2009
I dont know whats happening to me, I've been positive for 6 months and i had thought my sero conversion was over but i keep getting blisters in my mouth on my back and chest on my legs between my toes and on my palms; I cant keep going to the doc my insurance company dropped me and i already owe thousands in bills. Also i dont no if its related but i have impacted wisdom teeth and severely decayed teeth in my mouth im only 29. I tried to get medicade so i could see a dermitologist but they turned me down i dont know what to do. do you know what could be causing the rash? and should i be on meds my doc says he wouldnt yet but ive heard other doctors say to do it as soon as possible...i have no family left i dont know what to do ive always been able to handle major things but this is becomming too much i need help. ive only been with one person and they lied to me and gave me this now im lost.
Response from Dr. Frascino
Unfortunately, I can't diagnose the cause of your rash over the Internet.
You are HIV positive and your insurance company dropped you???? That's immoral and unconscionable! I'm sure there is a special place in hell reserved for insurance adjustors who make decisions like these. You are another prime example of why we urgently need health care reform!
I would suggest you contact your local AIDS service organization (just Google AIDS service organizations and the name of your city or town) and see if they have a benefits counselor who could help with your current situation. You might be eligible for some type of state or federal assistance program. There may also be an HIV provider in your area doing some pro bono work.
Your dental problems are not linked to your dermatologic problems. You'll need both an HIV physician and a dentist.
As for when to begin antiretroviral medications, see below.
Good luck. Remember to advocate for health care reform!
Different Answers by different Docs (WHEN TO START TREATMENT, 2009) Oct 28, 2009
Ok, this isn't a safe-sex question. I've read many of your replies to people and respect your wisdom.
My CD-4 has been 800 to 1,000 this year and VL not above 24,000. It has been a big decision whether to start meds. I've had 2 different docs from the HIV practice I go to give me 2 different answers. I've asked 2 other docs and got 2 different answers. Two say they would start meds if they were me. The other 2 say I should wait, because my numbers are so good and there's no need right now.
I'm wondering how you came to your decision. I know this is different for everyone. Did you start ASAP or wait until you became symptomatic? I worry about not being on meds with H1N1 lurking. Speaking of H1N1, should HIVers have Tamiflu on hand in case we get sick on the weekend and can't reach our docs? Going to the ER would just clog it up more and we'd probably catch something else while waiting 6 hours.
Again, I realize this isn't an HIV prevention question. Since you're the only doc on this site who shares this virus, I thought you may be able to offer more insights. At least I think you're the only one. I don't mean to take anything away from the other docs.
Thanks so much.
Response from Dr. Frascino
The reason you have gotten several different opinions on when to start combination antiretroviral therapy is that we really don't know the exact answer! If you were to follow the published recommended guidelines for when to begin treatment, you would wait until your CD4 count fell to the 300-350 range. If you talk to immunologists (like yours truly) and certain HIV specialist physicians, you would be advised that starting earlier than the recommended guidelines state could preserve immune function and decrease immune activation. There is mounting evidence that this may decrease long-term HIV-related morbidity and mortality. The clinical studies designed to answer this question definitively are still ongoing. The when-to-start conundrum is made even more complex by many confounding variables. For instance, how do we weigh the benefit of preserved immune function against the risk of short- and long-term drug side effects and toxicities which only occur in certain individuals? Also, combination antiretroviral therapy requires a very strong commitment on the part of the patient to adhere to the medication regimen. Some folks may not be ready for that lifetime commitment to taking medications. There is also the cost of the drugs and quality of life issues to factor into the equation.
I'll reprint some information below from the archives that discusses when to start treatment. However, I would suggest you continue to discuss this with your HIV specialist. He knows you and your case much better than I do. Consequently, he should be able to help you weight your options.
Tired (WHEN TO START TREATMENT, 2009) May 31, 2009
Hi Dr Bob.
2 weeks ago i had a routine blood test whch gave low neutrophile counts 1.200 X mm3 an d low Hb 11 and Hematocrit of 34 I got concerned and had an HIV test, this came back positive. My viral load is 6.000 and my CD4 257, the Dr says I must start treatment, is this correct? Besides feeling a bit tired sometimes, I feel fine. Thank you Paco
Response from Dr. Frascino
I'm sorry to hear about your recent diagnosis. If indeed your CD4 count is in the middle-250 range, I would strongly suggest you begin combination antiretroviral therapy without delay. Since this was your first test, if possible I would recommend repeating your CD4 count and HIV plasma viral load and also obtaining a resistance test (genotype). This will allow for confirmation that there was no laboratory or clerical error. Plus, the resistance test will help in selecting the best medications to include in your first regimen. I'll reprint some information from the archives that discusses beginning treatment. I would also suggest you read the information in the chapter "Just Diagnosed" that can be easily accessed on The Body's homepage. From there you can proceed to review the wealth of other information on this site.
Good luck. I'm here if you need me, OK?
Should meds be NOW considered? (WHEN TO BEGIN TREATMENT) Dec 26, 2008
Hello Dr. Bob.. Happy Holidays.. and may your coming year be as bright as a shining star.. I recently did my labs on received my results..CD4..453 and viral load 44,000. I have some minor discomfort such as swollen lymph nodes in the groin area and infrequent joint pains in elbow and knees. Do u recommend and consider the start of ARV treatment? Please give me your feedback because I am getting worried whether my immune system is rapidly degenerating.
Response from Dr. Frascino
The optimal time to begin antiretroviral therapy remains a hotly debated topic as we learn more about HIV pathogenesis and natural history and develop new, more potent, less toxic medications. I'll try to give you an update on where things stand at the moment, but I would strongly suggest you discuss your situation with your HIV physician specialist, as there are many variables that must be taken into consideration for each individual situation. There is no one right answer for everyone. When it comes to beginning antiretroviral therapy it's a case of "one size fits one!"
A new study presented at the recent AIDS meetings in Washington, D.C. suggested HIV-positive folks should begin antiretroviral therapy sooner than the guidelines currently recommend (CD4 count of 350). The large study found that delaying the start of treatment until the CD4 count falls to 350 nearly doubles the risk of death during the next few years when compared to the risk of death in patients who began treatment earlier (CD4 count under 500). The survival benefit, however, must be weighed against the chances of drug toxicities and side effects. There is also the risk that poor regimen adherence could breed a drug-resistant strain of virus. There are, however, now three recent studies all showing that HIV-positive folks who begin antiretrovirals while CD4 counts are above 350 have a better chance of their counts returning to the normal range (600-1,200) than those who delay treatment until the CD4 count falls below 350.
Personally, as an immunologist, I strongly recommend early intervention with antiretrovirals if the person is ready, willing and motivated to begin taking the medications.
I should also mention there are situations in which we currently start antiretroviral therapy immediately despite CD4 cell counts. These conditions include patients with concurrent hepatitis and certain types of kidney disease and those who are pregnant.
Ultimately, I'm confident there will come a day when any HIV positive patient diagnosed will be advised to begin antiretroviral therapy as soon as they are diagnosed. This year we've seen treatment guidelines for beginning antiretrovirals increase from a CD4 count of 200 to 350. I think it's likely that this trend will continue with a formal recommendation to consider treatment at a CD4 count of 500 in the near future. Stay tuned to The Body. We'll keep you posted as the guidelines are revised. My personal recommendation is to begin antiretroviral therapy as early as possible in most situations, being fully cognizant that there are risks involved and that our scientific knowledge is still incomplete.
Hope that helps.
Shingles Starting Treatment & Queen Issues (SHINGLES AND HIV, 2009) (WHEN TO START ANTIRETROVIRAL TREATMENT, 2009) Feb 18, 2009
Hi Dr Bob, Three weeks ago I came down with Shingles. A small patch on the back of my neck and a little across my chest all on the left side. I went to my local GP and he gave me Valtrex ( the 7 day shingle pack)Since then the pain has gone and the Shingles have crusted over ...yet are still present albeit not as visible. Ive been POZ since 20th july 2007 and am NOT ON HAART....do you think having Shingles is a sign that my CD4T cells have fallen below 500??? I have a meeting with my HIV Dr in 1 months time for my usual LABS (cd4 & viral load) Do you think if my CD4 T cells have fallen below 500( even though experts say below 350) i should start treatment?
Also im seeing dark circles appear under my eyes...Im 33 yrs old ..is this simply age related or Low CD4 T cells and high viral load?? I drink plenty of water and have no family background of "dark circles /bags " under eyes...maybe its AGE ..aaarrrggghh And Mardi Gras is only a few weeks away...HELP!?!?!
Thanks, Drew (Sydney, Australia)
Response from Dr. Frascino
G'day Aussie Drew,
Relax mate! Approximately 95% of healthy adults are seropositive for varicella zoster virus (VZV), the virus that causes shingles. Of this 95%, about 5% of healthy adults develop zoster (shingles). The risk for those of us with HIV is between 15 and 25 times greater. However, getting shingles (unlike many opportunistic infections) does not correlate with CD4 counts.
As for what your next CD4 count and/or HIV plasma viral load will be, I really have no way of predicting. (I don't know what your previous counts have been.) It's a good idea to wait a month or so after an intercurrent infection (like shingles) before checking your counts, because viral loads may well rise transiently and CD4 counts fall transiently as a consequence of any infection.
As for the optimal time to begin antiretrovirals, having just returned from the HIV/AIDS meetings in Montreal, I can advise you this topic continues to stimulate lively debate among HIV specialists. Recent studies, such as the North American AIDS Cohort Collaboration on Research and Design (NA-ACCORD), which included more than 8,000 patients from 22 North American prospective clinical cohorts, are designed to answer the question of when to start therapy. The investigators in this study found a 70% greater mortality in patients who deferred beginning treatment until their counts dropped to 350 compared to those who started treatment with counts between 350 and 500. This study was an "observational" cohort study and therefore there is the possibility of selection bias, etc. However, the results are certainly intriguing. It's also worth noting there are now several other studies that have also found lower mortality, morbidity, drug toxicity and/or improved CD4 counts with initiation of antiretroviral therapy at CD4 counts above 350. Current guidelines, as you mention, recommend treatment for all patients with CD4 counts below 350. However, with results of large studies suggesting earlier treatment is better coupled with the recent approval of new and novel antiretroviral therapies which appear to be better tolerated, less toxic, more convenient and less risky if adherence is not perfect, the treatment pendulum certainly seems to be swinging back in the direction of early intervention. Personally, I encourage earlier intervention if the HIVer is willing and motivated to begin. Ultimately, I think we'll be discussing "when not to start" rather than "when to start" treatment.
Would I recommend treatment if your counts are 500 or less at your next blood draw? I certainly would discuss the option of starting with you to ascertain if indeed you were ready, willing and motivated to do so. If so, yes, I'd recommend you start.
As for the dark circles, no, that's not HIV related. You've just probably had too many Fosters at the pub plus too many late nights at the Midnight Shift.
Enjoy Mardi Gras, Drew. I've got plenty of fond memories of the many Sydney Mardi Gras that I attended! I've even toyed with the idea of heading to Oz for this year's party as well. (Save me a dance, OK?)
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