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Viral Load Blip/Drug Change/Working = Fatigue (BLIPS, 2009)
Sep 8, 2009

Dr. Frascino,

First of all I have read many of your responses to various questions and I love the wit,and more importantly, the detail and the time you take in answering the questions. I have learned alot and I thank you.

I just read the following: Tuesday, August 25, 2009

Kidney function declines in patients taking antiretroviral therapy if their viral load is not fully suppressed, US investigators report in a study published in the online edition of AIDS. Although kidney function improved once a patient started taking HIV treatment, continued declines were observed in some patients, especially if their viral load blipped to detectable levels.

My last test, we think, was a "blip" and should I be concerned? Wondering if this is causing intermittent fatigue or could it just be simply I am working too much or????

I am a gay male 49 years old and until the Spring of 2008 I don't remember ever being sick. It had been well over 10 or so years that I ever called out sick that I recall to give you an idea. I never took anything during this time....not even an aspirin, but I did take a daily GNC mega-vitamin and sometimes would take echinacea and goldenseal.

In 1981 in conjunction with my routinely giving blood I found out I had Hepatitis B and was treated with Immune Gobulin as I recall and in 1982 I had an STD which was, of course, treated and cleared. Since that time I visited the Health Department frequently for STD screening and always tested negative. For many reasons and due to ignorance I always declined the offer for an HIV test. I thought, mistakenly, that one had to have had numerous STD's before getting HIV (which I recall was intially reported in the early 80's) and since I had had it once back in 1982 and never had another STD since and was regularly screened at the Health Dept, I thought I had escaped the "plague" And like I said I never felt bad or was sick and then when I started seeing friends and others die I became extremely cautious almost to the point of abstinence. I wonder if all this time I was an "elite controller" but ???

Anyway in the Spring of 2008 what I thought was just the flu was: 1) PCP Pnuemonia 2) Histoplasmois (Diseminated) 3) MAC (Mycobacterium Avium Complex)

I spent an entire month in the hospital and almost kicked the bucket, but thanks to some wonderful ID doctors like yourself, I am here to write this to you.

Upon discharge I was sent to the Medical Center's ID clinic (VA) and my tests have been as follows:

4-21-08 VRL 15,315 CD4 6 Was put on Atripla Clarithamycin and Ethambutol (for MAC) Itraconzole (Histoplasmosis) Dapsone (PCP Prevention) Gabapentin (Neuropathy)

5-14-08 VRL 244 CD4 60 8-5-08 VRL Undect CD4 83 11-17-08 VRL Undect CD4 113 CD4%5 Platelets 114,000 (Note I was given several units of blood and platelets when in the hospital and was told I was very anemic) 2-23-09 VRL Undect CD4 116 CD4%7 Platelets 126,000 5-8-09 VRL 80 CD4 166 CD4%7 Platelets 171,000 I was taken off of Clarith and Ethambutol and Omeprazole but remain on Itraconzole, Dapsone and Gabapentin and of course Atripla. I also have a script for Naproxen and Loperamide which I take as needed.

Funny because I noted when I went off the MAC drugs I had a little bit of extra energy but am now experiencing fatigue a little more than usual. Not every day but a little more often than before and was wondering if my body is just adjusting to "NOT" having those drugs in my system and nothing really to worry about or is it just from working alot. I went back to work (forced myself and I think all things considered that it has been theraputic) Summer of 2008 and have, except for some time here and there taken under the provisions of FMLA) and vacation time have maintained a full-time work schedule and sometimes with overtime. I also work on my feet (Airport)and have wondered if I am taking any risks by coming in contact with all sorts of folks (from A to Z). So when I get tired is it work or the drugs?

It may just be worry too Doc as I have been reading and reading and reading on many things related to HIV/AIDS. (I can't believe how ignorant and mis-informed I was) The one study that has scared me a little and if I could get your take on it please was the MAC study on Gay Men. If I understood it correctly on the topic of life expectancy it was saying now more or less that hivers on ARV therapy that did not have an opportunistic infection would have a normal life span but that those first diagnosed when presented with OI's and with a low CD4 count had a life expectancy of around 49. Did I read this correctly? My ID Doc (who is also with the CDC) (and who I think is fabulous)(and with whom I have taken an active participation in my care)seems to think I am not going to croak anytime soon. As someone that shall remain nameless likes to quip "what say you"?

Thanks again for all you do for so many!

Response from Dr. Frascino

Hi,

I'll try to answer your multiple concerns and make a few general comments along the way.

"Blips" are not related to increases in HIV-associated fatigue nor have they been found to be predictive of drug resistance or increases in clinical symptoms (morbidity). I'll repost below some information from the archives concerning blips.

HIV-associated fatigue is common and often has a multifactorial etiology (multiple causes working in tandem). Could you simply be working too much? Sure. Inattention to the basic daily requirements of sleep, rest, nutrition and exercise can be associated with increased fatigue. Other common causes include anemia, occult infection, anxiety/depression and drug toxicities/side effects. You should work closely with your HIV specialist to thoroughly address all the common as well as many of the not-so-common potential causes of HIV-associated fatigue. You can read much more about the causes of and treatment for HIV-associated fatigue in the archives of the Fatigue and Anemia forum.

Your delayed HIV/AIDS diagnosis is seen all too commonly in folks who decline routine HIV testing. I do not believe you were ever an elite controller, considering your severe degree of immunodeficiency noted at the time of your diagnosis.

Your problem with anemia and low platelets was most likely related to your Mycobacterium Avium Complex (MAC) opportunistic infection. Current recommendations suggest discontinuing MAC prophylaxis when the CD4 count rises above 100 and stays there for at least three months. However, since your fatigue is once again increasing, you should be screened for a possible recurrence of MAC.

Regarding your decision to return to work and whether you are potentially harming your health by doing so, I would discuss this openly with your HIV specialist. He sounds like a great guy and highly experienced. He can help guide you regarding work restrictions, part-time employment or disability.

The MAC study is a longitudinal study and I don't believe you can predict what's going to happen to any one specific person based on these types of observational cohorts. Also, it's important to note that we now have many more drugs in our treatment armamentarium. I'll reprint below some information about life expectancy. I agree with your doc. You're not going to be pushing up daisies anytime soon.

Be well.

Dr. Bob

Resistance (I know, not your "department.") ( BLIPS, 2009) Apr 25, 2009

Dear Dr. Frascino, I know that drug resistance is not your official "department" here at The Body, but the Drug Resistance Expert here no longer takes questions, and I am very anxious about my situation. I tried asking my question to the "Understanding Your Labs" Forum, but they did not respond. You are so knowledgeable about all areas of HIV and AIDS, I am wondering if you could help me understand what is going on in my case.

To put it as briefly as possible, I was diagnosed in July, 2006 with a tcell count of 90, and a viral load of 5,000. I was immediately put on Truvada/Sustiva, plus a prophylaxis agains PCP. Within a month or so, my viral load was undetectable, and my tcells started (slowly) rising: By July 2007, tcells had risen to 190, by July 2008, to 225. I just had my labs done this week (April 2009, obviously), and my tcells are up to 325.

My viral load has been undetectable for this entire period. Until this week's labs. Now, however, the viral load has risen to <184.

I have been completely adherent to my regime since I started taking meds. I have never missed a dose EVER. My only deviation is that I fly internationally for work frequently, to far flung places like Sydney, Singapore, and various places in Europe (from where I live in San Fran.) My doctor told me to always take my meds at bedtime, in whatever time zone I am in. This means, on travel days in some directions, that there is sometimes a 5 to 12 hour delay in the time I would have usually taken the meds. But I followed his instructions.

I should add that one year ago I was switched from Sustiva/Truvada to Atripla.

I am terrified that this rise in my CD4 tcells is signaling the start of drug resistance, and I am so upset as I have tolerated the meds with no side effects whatsoever. I should add I have also never had an opportunistic infection.

I am part of a program, and so see a different doctor on various visits. My current doctor is not one for explaining things very well, and when I asked about the viral load rise to 184, he just shrugged his shoulders, and said "We'll see what it is in 6 months." And left the room. He did not add "Don't worry, it's nothing."

So I am very confused, and very upset. Don't have a clue as to whether this is a blip (and if so, why now?) or if I am starting drug resistance. (And if so, did I cause it by my travel schedule?) Any information you can impart would be appreciated so very much. And if I am indeed developing a drug resistance, what would this mean to my overall prognosis? Would the alternative therapies be less effective? Are they likely to cause more side effect? I wish I understood what is happening here.

If this is happening, could it have been the switch from Sustiva/Truvada to Atripla which caused the rise in viral load? Could it be the deviation in medication timing caused by my international travel?

Thank you so much again for your help. Again, I fully realize that this is not under the "brief" of your particular site, but I would be so appreciative for your help.

It would be lovely if my own doctor would answer some of these questions, but they just seem to shrug. Straight men, what are you going to do with them.

Thanks so much -- Geo

P.S. I'm so sorry, but two other questions: Why am I still taking the antibiotic to prevent PCP? I thought that should have stopeed at tcell 200, but I'm still on it. Also, my tcell rise over 2 and 3/4 years seems slower than a lot of people seem to experience. Is going from 90 to 325 in 2 years and 8 months a reasonable outcome, or is this slow?

Response from Dr. Frascino

Hi Geo,

Glad to help.

First, I should mention I'm certainly not impressed with a healthcare program that makes you see a different doctor on each visit. Nor am I impressed with Dr. Shrugged-shoulders! What's up with that? That you are receiving such suboptimal care in a city like San Francisco is all the more shocking! Generally speaking we have excellent HIV care in San Francisco.

Let me try to address your many concerns (which should have already been thoroughly addressed by any competent HIV specialist!)

1. A rise in HIV plasma viral load to 184 copies after more than 2.5 years of being consistently undetectable on combination antiretroviral therapy is not at all uncommon. Most likely this is indeed a transient rise in viral replication, a "blip," which will subside spontaneously. Blips can be caused by a number of underlying conditions ranging from an intercurrent infection to a recent vaccination. See below.

2. Is this the start of drug resistance? Most likely no, it is not for several reasons. First, your viral load is extremely low (184 copies). Second, you've been "completely adherent . . . never missed a dose . . ." and you've had an undetectable viral load for over two years.

3. Could it be caused by your travel schedule? No, this is not likely. An occasional delay of 5 to 12 hours due to your travel schedule should not affect this regimen. Sustiva in particular has a very long half life.

4. Would drug resistance, if you did develop it, affect your overall progress? No, as long as you could be switched to another completely suppressive regimen. (You still have many options, as Atripla (Sustiva/Truvada) is your first regimen.

5. Would alternative therapies be less effective? No.

6. Would alternative therapies cause more side effects? Every drug has its own unique side effect and toxicity profile. If someone developed resistance to one regimen and needed to switch, this would not change the side effect profile of the drugs in the new regimen.

7. Is your blip the result of changing from Sustiva/Truvada to Atripla? No. These are identical combinations. Atripla merely combines the three drugs into one tablet.

8. Why are you still taking the antibiotics for PCP prophylaxis? Good question! Probably because you are seeing so many different doctors and no one is paying close enough attention to what's going on with you! The updated guidelines clearly indicate primary prophylaxis for PCP should be discontinued in adults who have responded to combination antiretroviral therapy with an increase in CD4 count to greater than 200 for longer than three months. Clearly you have met these guidelines criteria for quite some time. You might want to point that out to whomever you see at your next visit. Better yet, why not find a health plan that allows you to consistently see the same HIV physician?!

9. Is your rise in CD4 count slower than anticipated? This is a difficult question to answer, because there is great variability from person to person for a whole variety of reasons involving both the virus (viral strain, viral fitness, etc.) and the host (genetics, immune integrity, concurrent infections, medication adherence, etc.). It is true some folks respond more dramatically and quickly than others. Your rise from 90 to 325 (essentially tripling) is significant and encouraging. How high will your counts go and over what period of time no one knows. We are learning it's far better never to let the CD4 cells drop to low levels, because we can't always bring them back. Even when we do manage to increase their numbers, we still aren't certain these new cells function as effectively as the ones HIV initially wiped out. This realization is one of the factors that are driving us to begin treatment earlier and earlier.

Good luck. I'm here if you need me (even if it's not my "official department," OK?).

Finally, as for "straight men, what are you going to do with them?" Well, I suppose we could give them a queer-eye makeover for a start, eh?

Dr. Bob

blips Sep 6, 2008

Are frequent blips in VL (under 2000) common? I've had about 4 now after 6 years of being undectable. Wondering why this occurs as I am very adherent to taking my meds. Thanks fo your help.

Response from Dr. Frascino

Hello,

It's a bit difficult to give specific advice on "blips," because different folks define them differently. For instance, if your blips approach 2,000, that's fairly high. Most are in the hundreds. In general, a blip is a very transient rise in HIV plasma viral load from undetectable to low-detectable levels, which returns to undetectable levels quickly (within weeks). There are different theories as to the cause of blips, including:

1. release of virus from reservoirs or protected sanctuaries in the body where replication of drug-sensitive virus continues at a low level;

2. drug-resistant virus;

3. Immunological events, such as a concurrent infection or vaccination, which suddenly increase the number of infection-susceptible immune cells and result in a viral feeding frenzy. This subsequently causes a transient blip; and

4. variations in drug levels in a person hovering on the margins of total viral suppression.

Whatever the cause, most studies have suggested that there is no association between blips and loss of virologic control or disease progression. That said, if indeed you are blipping over 1,000 copies/ml, I'd suggest you get a resistance test (genotype/phenotype) at the time of your next blip, as you've now had four blips following a six-year period of being undetectable. The resistance test will let you know if you've developed any resistance to your current drug regimen.

Good luck.

Dr. Bob

Blips (part 2) Sep 10, 2008

Dr Bob, I think i may have worded my last question wrong. You answered it last week. I have had 4 blips during the 6 years I've been undectable. These did not occur concurrently and a few have only been in the hundreds. My doctor does not seem concerned but again, I was curious as to why I've had so many. Also does the VL have to be at a certain level for an accurate geno test? Thanks in advance.

Response from Dr. Frascino

Hello,

May have worded your last question wrong???? There is no "may" about it! (See below!)

I concur with your HIV specialist. Four "blips" over six years is not all that uncommon and not worrisome. You can read more about "blips" in the archives.

As for genotype and phenotype resistance assays, generally the HIV plasma viral load must be above 500 copies.

Be well.

Dr. Bob

HIV Lifespan (LIFE EXPECTANCY, 2009) May 27, 2009

Dr Bob,

I am HIV- and my partner of the last 5 months was diagnosed with HIV 2-3 years ago. Since his diagnosis, he's been on treatment that he's responded very well to, as his viral load is "undetectable," he is extremely strict on taking his medication and his side effects have been very mild, compared to what we are aware is possible. He visits a specialist regularly, who seems to be very careful, but also seems extremely optimistic.

I've researched a lot about HIV and mixed status couples, and have really feel like I've been enlightened on the issue. However, there is a large amount of conflicting information out there, and it is difficult to surf through. I've got a question that so far I cannot find a real answer to:

Is it possible, assuming everything continues going well, for HIV to continue to stay in that type of dormant state indefinitely? Or is there something inherent about the virus that takes its toll on the body after a period of time and will eventually get worse?

We are in our 20's, and I guess the core of the question, is if its possible or reasonable to expect a fairly normal lifespan for him?

Response from Dr. Frascino

Hi,

Unfortunately no one can give you a definitive answer to your question. The reason is that the newer, more effective HIV medications haven't been around long enough for us to know!

HIV is never really "dormant." Certainly you can have a protracted period in which an HIV-infected person can be asymptomatic; however, that doesn't mean HIV is sleeping.

I'll reprint some information below that discusses prognosis and life-expectancy issues for those of us who are virally enhanced. I should also state that we hope for further improvements in HIV treatment in the future.

Dr. Bob

How Long?(LIFE EXPECTANCY) (PROGNOSIS) Dec 12, 2008

If you are infected by HIV would you have a normal life span like any other human without?How long could you live without meds and how long can you live with the medications?

Response from Dr. Frascino

Hello,

The course of HIV/AIDS varies considerably from person to person. Many factors are involved, including viral strain, concurrent illnesses, age, immune integrity, etc. As for life expectancy with HIV/AIDS, see below.

Dr. Bob

prognosis for us all (LIFE EXPECTANCY) (PROGNOSIS) Nov 14, 2008

dr. bob,

hope the wedding went well! congrats. i wanted to ask you about the prognosis for long term med use in relation to life expectancy. i have read quite a bit and it's always very interesting to say the least. i know you can't give a definitive answer, as no one can at this point, but i know you have dealt with this on a very personal level for many years and i value your opinion both as a person and medically. given that a person is "in good health" and starts HAART at the "appropriate time" AND (lol) "adheres to one's regiment faithfully", what do YOU think the life expectancy is for someone dealing with this illness. i have gotten solid but unemotional answers from my ID doc and i have read everything from 10 to 23.22222 (lol) years. i hope i'm not putting you in a spot, but there's no one who has this that doesn't bounce this question around at some point. without going on anymore, please be honest with me on a personal level. i know you understand this need and i hope i'm not being intrusive. your input is invaluable as i consider you a very talented and compassionate individual. thanks for at least reading this. peace and health to you and your husband.

dale

Response from Dr. Frascino

Hi Dale,

Your question is not intrusive or inappropriate in the least! Nor are you putting me on the spot. In fact, I've addressed this topic recently. See below.

The reason we can't give a more specific answer is that there are so many variables at play, such as age, viral strain, concurrent illnesses, immune integrity, immune response, etc., etc., etc.

Personally, I plan to die of old age. Care to join me at the old folks' home?

Dr. Bob

Does HIV always turn into Aids (SURVIVAL) (LIFE EXPECTANCY 2008) Sep 29, 2008

Hi Dr Bob,

first l would like to say what a great effort you put into the forum, and you are my hero, l am recently Hiv Positive not on meds yet, CD450.... when my cd drops to 350 in the future, and l can take meds well, what are the chances l will end up getting AIDS or dying from Aids ??? if HIV even when your on meds leads to AIDS how long in years does it take to go from hiv to aids ??? l know you dont have a crystal ball, but just your expert opinion will do.. l live in Australia..... and l hope obama wins the election and approves stemm cell reseach, ......... thank you for your time Dr Bob

frank

Response from Dr. Frascino

Hello,

I've recently addressed your question. See below. I have nothing new to add.

Dr. Bob

how many people die from HIV in 2008 (HIV/AIDS SURVIVAL) Sep 6, 2008

Hi Bob, l am recently infected with hiv and and live in Australia, 36 years old and my hiv specialist told me hardly no one dies of hiv-aids anymore in Australia, he said maybe 10% of pepole with HIV die in 2008 in auz, but people infected in 2008 with a CD4 of 350 and start treatment early, will have a healthy normal life span with todays and future treatment, without hep b and c.. l read that with todays treatment a 20 year old can live at least 40 years on meds is this true ???

Dr Bob you are one man that tells it as it is... please what is your information and opinion on the above...

thank you for your time, you are my hero Dr bob for prez of america

Response from Dr. Frascino

Hey there Aussie Dude (or Dudette?),

How many people die from HIV in 2008? Well, if you are asking how many HIV/AIDS-related deaths will occur worldwide (or in the Land Down Under) in 2008, we obviously don't know yet, because it's only September, silly boy (or gal). The most recent actuarial data we have is for the year 2006. That year, an estimated 2.9 million people worldwide succumbed to the pandemic.

However, I tend to doubt that is the real emphasis of your query, right? I assume you're more interested in prognosis, wondering more how many of us will live rather than how many of us are going to be pushing up daisies any time soon. This is a difficult question to answer definitively, as none of us (even Professor Trelawney from the Harry Potter series) has an infallible crystal ball that accurately predicts the future. What we can say with great confidence and a grand sigh of relief is that HIV/AIDS is no longer a death sentence with a short shelf life, at least for those of us fortunate enough to have access to antiretroviral medications and HIV-knowledgeable health care providers. I realize many well-meaning folks in the HIV/AIDS health care field have made the prediction that HIV/AIDS is now a "chronic manageable illness" and those infected should expect to live "a normal lifespan." Well, I'm perhaps the most optimistic person on the planet, but I'm also a scientist and realist. As such, I can't really claim that we have good data to support this claim. What information we do have clearly demonstrates that the introduction of potent antiretroviral agents in the mid-1990s has been nothing short of miraculous in decreasing AIDS-related morbidity (illness) and mortality (death). These drugs are literally life sustaining, but they are not curative! As I mentioned, nearly three million lives were snuffed out by the virus in 2006! Antiretroviral agents offer us a reprieve from HIV-related illness and death. How long the reprieve will last is still unknown. Years ago, we used to say the average life expectancy was 10 years from the time of diagnosis to death for HIVers. That was an average with a wide-shaped bell curve encompassing that 10-year mark, because patients often don't get diagnosed with HIV at the time they actually contract the virus. In fact, many don't get diagnosed for years and years afterward when their immune system is already shot to hell (or heaven?). Certainly, HAART (highly active antiretroviral therapy) changed this 10-year statistic in a very dramatic fashion. In fact, in 2006, there was a statistical calculation of projected life expectancy for young hypothetical HIV-infected patients. This computer model estimated 24-year survival. But again, this was only a computer-generated model, not real life HIVers. But it in essence doubled our previous "10 year" estimate. We also have a case-control, population-based cohort study of all HIV-infected persons receiving care in Denmark. Denmark, unlike the U.S., has universal health care that delivers quality HIV care and medications to all who need them at no cost!!! An epidemiological study of Denmark's HIVers revealed a median survival time of 32.5 years for 25-year-old HIVers infected between 2000 and 2005. If we excluded those co-infected with hepatitis C, that median survival number increased to 38.9 years! Great news, eh? However, it's still not as good as age-matched controls that did not have HIV or hepatitis C. Their median survival was 51.1 years! So the message is clear. Let's all pack our bags and move to Denmark! Well, in case that's not an option, because you would miss the kangaroos, koalas and that awful tasting vegemite stuff, what we can conclude from these studies is that life expectancy is dramatically improving from the bad 'ol days of the epidemic. And equally important is the fact that none of the studies can factor in the effect of new developments that will come online within the next decade or two. We've made incredible strides in the treatment of HIV over the past decade and should assume progress in new and novel therapies will continue to be forthcoming in the future. So should you plan on buying that piece of retirement property on the beach for your golden years? Well, as they say in Denmark, ya! ya betcha! (Oops, I think that's a slogan from the Scandinavian Midwest, but you catch my drift, right?)

Be well and let's get through this together, OK?

Cheers Mate!

Dr. Bob

Follow-up to "Just found out..." (SURVIVAL) (LIFE EXPECTANCY 2008) Sep 21, 2008

Sorry, had to do a follow-up... and thanks for the kind words. Made me and my b/f happy for a bit, but he's ever the optimist and I'm ever the... not.

I'm in law school... I don't work... I'm already scared of the costs of all this stuff, and if my insurance (mom's plan) drops me before 25 where they would anyway, what would happen to me? I feel so lost... and when I pulled up that site, it pointed to like 4 docs only and three of them were at the UT health science center here... so I dunno what that means, but I see a doc there and she's a resident psychiatrist.

I'm afraid of why I lost so much weight so fast... why there were weird spots on my skin, night sweats... I guess what I'm asking is it true that if ARS hits you bad you're a fast-progressor or will advance towards AIDS fast?

I'm of course worried as to what strain, if it'll even be treatable... heck, doc, can I just ask? Is it true everyone with HIV WILL get AIDS at some point? Or is the truth the other side, that you can avoid it with meds?

I'm not the thinnest person, so I'm worried I'm screwed in health already and it'll just get worse. I understand I need to make moves to find a doc, and I so will... just have to ask what an outlook is for someone like me, considering how well you've done! I envy you, it sounds like it doesn't affect you nearly as much as the media makes it seem a person would be hampered.

At early 20's, will I even see 40?

Response from Dr. Frascino

Hi,

First off, if you're covered by your mom's health plan until you are 25, you can't be dropped just because you've acquired a viral infection! And by the time you turn 25, Obama will be president and hopefully we'll have universal health care so that all Americans won't have to be terrified of getting sick! (All readers please remember to register and vote for Obama and the Democrats!)

As for the four certified HIV specialists in your area that you identified from the American Academy of HIV Medicine's Web site, use the criteria discussed in my last post (re-posted below) to help you make your final selection.

Regarding severity of ARS symptoms, this is not related to disease progression or longevity.

As for whether everyone with HIV will eventually get AIDS, no one knows! What I can say is that we do not have a cure for HIV/AIDS, nor is there one on the foreseeable horizon. However, we have made remarkable progress in treating HIV/AIDS and this has improved life expectancy considerably. (See below.)

Will you live to see 40? If you turn off the computer and get your butt into an HIV specialist's office, I'd say your chances are phenomenally good.

Let's get through this together, OK?

Dr. Bob

Just found out... (CHOOSING AN HIV SPECIALIST) Sep 20, 2008

Well, doc, the feelings came and went and I got the nerve to test. It was positive... I don't know what to do now and I don't even know if I have long left cause of how bad I had the ARS and weight loss...

I want to live... I want to live a long happy life... I live in Texas, am I screwed? I'm a student in a grad school, so I'm poor, but what can I do? How do I move forward?

Response from Dr. Frascino

Hello,

Only those of us who have been through it really understand the full impact of hearing the words "your test came back positive." Many of us feel scared, wondering if we will soon get sick or die. We fear that we will be shunned, lose our jobs or maybe our housing; that we won't be able to have children; that we'll never be able to date, get married or have sex again. None of these things are, in reality, true.

The virus found me while I was working over 17 years ago! Back then, the prognosis for HIVers was about 10 years max. We've made remarkable, in fact miraculous, improvements in treatment of HIV/AIDS, which have dramatically decreased both morbidity (illness) and mortality (death) as demonstrated by the fact I'm still here answering your question rather than pushing up daisies. It is true we do not have a cure, but for many of those lucky enough to have access to antiretrovirals and expert (or at least competent) HIV medical care, "virally-enhanced," healthy and fulfilling lives are truly attainable. Here in the U.S., even for those who don't have or can't afford private health insurance (this includes undocumented immigrants, by the way), it is possible to get quality HIV care and support in most areas of the country.

Now that you know you are HIV positive, I would recommend two simple first steps:

1. Consult an HIV specialist. She will be able to assess the severity of your HIV disease and also help you access the health care system based on your health insurance or lack thereof. To locate an HIV specialist in your area, check the American Academy of HIV Medicine's Web site at www.aahivm.org. There you will find a roster of certified HIV specialists listed by locale. (I'll also print some information below from the archives that discusses choosing an HIV specialist.)

2. Get informed! Learn as much as you can about HIV and its treatments. This Web site is an excellent place to accomplish that. Begin by reviewing the information in the "Just Diagnosed" chapter that can be easily accessed on The Body's homepage under the Quick Links heading. Start with the articles found under the "Just Diagnosed Basics" subheading.

Finally, as far as living in Texas, well, yeah, that kinda sucks, but it really shouldn't impact negatively on your HIV disease.

Start learning more about HIV and get evaluated by an HIV specialist. I'm here if you need me. Let's get through this together, OK?

Dr. Bob

Need a Private doctor Aug 14, 2008

I am HIV Positive living in Seattle area. I currently don't have one and i am looking urgently in a private clinic? Do you know a good one? I asked this question earlier & was told about Peter Shalit who is fully booked until end of year. Please let me know if you have a good one in mind. Thank You.

Response from Dr. Frascino

Hi,

I would suggest you consult the American Academy of HIV Medicine Web site (www.aahivm.org). There you will find a list of certified HIV specialists arranged by locale. There are a number of well-qualified HIV specialists in the Seattle area. Be sure you hook up with one that you trust and with whom you can easily communicate. Your health insurance plan may have some restrictions, so remember to check this out as well. I'll repost some information below from the archives pertaining to locating an HIV specialist.

Good luck.

Dr. Bob

Choosing an HIV Care Provider

July 18, 2007

Why Is Choosing an HIV Care Provider Important?

Treating HIV disease is very complicated. There are choices to consider at every stage of the disease. It's best if you and your health care provider work together as a team. That makes it easier to choose and stick to your treatment plan. "Care provider" means a doctor, a physician's assistant, or a nurse practitioner.

There are several issues you may want to consider in choosing an HIV care provider. You might decide to have them be your "regular doctor" for all of your health issues. You might use a different care provider for most health issues and use your HIV provider as a specialist. If your regular provider isn't an HIV specialist, be sure they regularly get expert advice on HIV issues.

Training and Experience

Many people with HIV/AIDS get their care from physicians who are specialists in infectious diseases. However, especially now that people are living longer with HIV, it's important to deal with all of your health issues. You might prefer to have a family practitioner or a specialist in internal medicine as your primary physician.

No matter what their specialty, you will get better HIV care from providers who have experience treating people at all stages of HIV disease. Be sure to ask how many patients with HIV they have treated, and how many they currently see. HIV patients do better when their physicians have more experience treating HIV disease.

Do You Have Similar Ideas About Treating HIV?

Some providers are conservative. They prefer "tried and true" methods. Others are more aggressive. They are willing to try new and experimental treatments. Some are optimistic by nature, and focus on the hopeful or positive side when they talk about test results or future prospects. Others are more realistic. Some are pessimistic.

Some providers are comfortable suggesting "complementary and alternative" therapies such as massage, acupuncture, or herbs. Others stick strictly to Western medicine.

If you want a lot of emotional support, you probably won't be comfortable with a health care provider who only talks about test results. The more comfortable you are with their approach to HIV treatments, the easier it will be for you to get the kind of health care you want. Talk to providers and their patients before you make your choice.

The Provider-Patient Relationship

Many patients do better when they take an active role in planning their own health care. These patients do a lot of reading on their own, and bring information to their providers. They work together to make health care decisions.

Other patients are more comfortable with the provider making important decisions. Decide how you want to work with your provider. See if that fits with the way the provider likes to work with patients.

Help Your Provider Help You

Make sure that your provider has all the information needed to give the best advice about your treatment. This starts with your medical records, which may have to be transferred from another office. When you start working with a new provider, they will probably do a lot of tests to collect "baseline" information. This helps you see how well you're doing as time goes by.

Be sure your provider knows how you feel about using medications, and about your illness. Some people don't mind taking a lot of pills. Other people would rather take as few as possible. Are you willing to change your diet, or the amnount of exercise you do? Your provider should also know about other treatments you are using or want to try, including non-medical ones.

Be honest about your lifestyle. Your eating, sleeping, and work patterns can make a difference for your health care. So can your sexual practices and use of recreational drugs. If your provider seems too judgmental, try to change providers. It's better to have a provider who really knows you instead of holding back information.

Let your provider know about the important people in your life: the people who will support you if you get sick, or will help you make important medical decisions.

Availability

The best care provider won't do you any good if you can't get in to see them. Ask them (or their receptionist) how long it usually takes to get an appointment. Find out how well they usually stay on schedule during the day.

The type of insurance you have could limit your choice of a provider. Maybe the provider isn't on the list for your health maintenance organization (HMO) or insurance plan. Be sure to find out how you will be able to pay for their services.

Remember, you don't need an HIV specialist to help you with most of your health care needs. If a good HIV provider is hard to find, or if it's hard to get an appointment, use a non-HIV care provider for your general health care. Just be sure that when you are dealing with HIV issues, you see an experienced HIV provider, or one who consults with an expert in HIV.

Confidentiality

Some people are very concerned about keeping their HIV status private. You might choose to get your HIV care from a provider in another town to protect your privacy. You will need to find your own balance between confidentiality and convenience.

Changing Providers

Your health care needs might change as time goes by. Also, your ideas about treatment could change. Although you will probably get better medical care from a provider who has known you for a long time, you always have the right to stop seeing one provider and change to another.

To Find a Health Care Provider ...

You can get help finding a care provider from your case manager or from your local Department of Health. You can also ask other people living with HIV. The American Academy of HIV Medicine has a web page to help you find a doctor at http://aahivm.org/web/index.php?option= com_comprofiler&task=usersList.

The Bottom Line

HIV medical care is very complicated, and changes quickly. This makes it important to find an HIV care provider who works with HIV/AIDS patients and is committed to staying up to date. Your relationship with an HIV provider will be better if you are comfortable with each other's personal style and approach to dealing with health issues in general, and HIV in particular.



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