|Follow-up to an incomplete story a year ago.
Oct 28, 2009
Hi Dr. Frascino,
Thanks again for answering my questions a year ago: http://www.thebody.com/Forums/AIDS/SafeSex/Archive/Infected/Q196496.html
I know this probably doesn't fit the forum topic anymore, but I'm writing back as requested.
Because I've probably written and thought about this a million times, I'll just summarize it all: I'm HIV+ from a single exposure of questionable risk level. It effing sucks, especially considering how crazy I was about safer sex and being healthy to begin with.
Summary of the past year? For a while I was reading all I could, journaling, going to a bunch of "counseling" appointments. The biggest issue is that I feel I have to confront the person who infected me, instead of letting it go, because I really feel he could have and should have prevented my infection. And of course now I'm in his shoes.
I'm semi-hermiting myself from the HIV community because of some ridiculous counseling and a really awful talk group I went to. Tons of conflicting messages, feeling like I'm not heard at all, etc. I've told my dearest friends and feel like while they listened and were fine, they don't really care anymore. I'm totally fearful of my family, so I haven't told them, and feel the pain of that every time I interact with them.
Hmm ... to add to it all, I'm unemployed, uninsured, and I'm basically living a Notes from Underground existence while I'm supposed to be young and experimental and traveling the world (at least I want to be). Not that I wasn't a worrier before! And yes, I've seen a series of therapists, and antidepressants aren't for me.
But don't worry, I'm surviving, and actually I think I'm just hard on myself - I'm actually taking care of myself and trying not to stress out too much. Maybe I'm a hypocondriac about being a hypocondriac?
I guess the main reason in writing is just to put the gloomy update out there. Of course I'm worried about my health too. If I were a person other than myself, I wouldn't *know* whether to say if I'm healthy or not. I don't smoke, drink much, take drugs, have any other chronic issues, engage in any high risk behaviors, yet I'm worried that I don't have a balanced enough diet, consistent enough sleep, exercise enough, etc.
Aaanyway, my biggest worry right now is when to start medication. I was infected 1 year and 3 months ago. I'm at around 11,000 VL and 440 CD4 (these numbers have remained statistically constant over all tests since a year ago). I'm sensitive to all medications.
I read way too much conflicting information about benefits and risks of medication. You know: is my starting CD4 count too low; should I wait until 350; is it beneficial in general to have a low VL and higher CD4; are the accumulated drugs going to screw us all over, etc.? Just yesterday I was sweating over two articles that say not taking care of both counts carry a higher risk of cancer and makes death come sooner (in summary). That 500 is the new 350 and that really being above 650 is ideal. And of course I'm forming psychic thoughts in my head that just you wait, they're gonna come up with a cure but it only works for people who haven't been medicated, or something like that.
And now I'm afraid of H1N1, cutting my finger in the presence of another human, holding babies, and using other people's bathrooms because I get crazy nosebleeds sometimes. Well, I mean, that's being dramatic, but I have these thoughts. I feel like there are mixed messages on what level of precautions to take when protecting others from exposure. Kinda like how when a tourist is on the Japanese metro for the first time and freaks out about the face masks, he'll think, "Is everyone really that paranoid about catching something? Isn't that kinda isolationist and insulting?" When really, no, they're going through measures to protect *us* from *their* germs, mostly. I feel like I should wear a body condom when out in public, a different color for each day of the week.
Sorry for the long vent, but yeah. I just feel really damned if I do, damned if I don't. I'll sooner die from stress if I keep up too much on all the latest news and medical information. But I'll lose opportunities to better treat this if I go all holistic and refuse medication like my one friend (and sh*t, I don't have ancestors who survived the plague and I don't need a bone marrow transplant!).
Sigh. I'm just finding it very, very difficult to be motivated to do well for myself and feel like I still have things to look forward to in life. I feel like I can't plan for amazing journeys, can't approach getting started in new relationships, can't make intellectual or career goals ... but at least I can somewhat toss my head back and laugh and doom and gloom retirement articles, because I sho' don't have to worry about retiring at 75 vs. 82 and having enough money to survive 'til 100 at this rate.
In summary of the summary, my diagnosis hasn't been a beautiful wake-up call and spark to start living life to the fullest, I actually feel like I've been very pro-active on the medical and psychological front but still feel unhopeful, and I'm very angry and sad that this is happening to me or anyone else. Any clever new perspectives or advice?
Thanks, Feeling Trapped
| Response from Dr. Frascino
Accepting a new reality that you are "positively charged" requires a period of adjustment. Unfortunately, at one year and three months it does not appear that you are adjusting well at all. You report being "unhopeful, very angry and sad . . . ." Certainly being unemployed and uninsured and not having a strong support network are contributing to your problem. You may have "seen a series of therapists," but there is no doubt you need additional psychiatric/psychological help adjusting to and accepting your new reality. You are indeed clinically depressed. I would once again encourage you to seek the assistance of a psychiatrist. I would also expand your support network of friends and family who know and understand your situation. As for when to begin combination antiretroviral treatment, this is a complex question that I discuss frequently in this forum. I'll post a sample below of what you can find in the archives. I would encourage you to discuss treatment options with your HIV specialist physician. Finally, I'll post additional information from the archives about "being positive about being positive."
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?)
A question for humanity (BEING POSITIVE ABOUT BEING POSITIVE, 2009) Jul 12, 2009
Hi Dr. Bob,
I had written to you a couple of times but did'nt get an answer. I was worried of breast milk exposure with a massuese. I got tested negative on 7 occasions in 12 weeks (12th week included)on duo tests as well as a PCR DNA in week 9. However, this forum was a great helper during the times when I actually contemplated suicide. How do you manage to live with this damn disease and find it in you to help other people? I am 31 and realised that life is so precious and we can do so much for those in need. Just that it must be so difficult to live with this condition and still live a fulfilling life. Just how do you do it doc? I live in India and there are so many people who probably don't even know they are infected. May god give every soul a little bit of your compassion and courage. May you live long and prosper.
Your friend from India
Response from Dr. Frascino
Hello Friend from India,
I've addressed the question of breast milk as an HIV-transmission risk for adults many times in this forum. Hopefully you found those responses in the archives. I'm delighted (although in no way surprised) your definitive HIV test was negative.
As for how I remain positive about being positive (so to speak), I've actually addressed that in the archives as well. You can find those responses in the chapter entitled "About Dr. Frascino." I'll repost below a sample of what can be found there.
Be well. Stay well.
A reality you and i face everyday (BEING POSITIVE ABOUT BEING POSITIVE) Jan 2, 2009
Dr Bob, From the forum i have found that you are a person who has taken hiv and life in the same stride and lived it to the full! I am proud of you and i am sure so are many of the readers! But i was diagnosed just recently, a week before and i am an immigrant student who just got a job in engineering industry in the midst of this terrible economy! How do i make sense of everything? I mean first of all i need to convince myself that i didnt let my parents down by spending half a grand on education and now that i have a job to start in this poor economy, i also have a disease to deal with! How do i convince myself?What do i tell myself? How do i face myself in the mirror? And ofcourse what do i do to make sure that i go on living as the rest of us do without suffering since i think thats the most fitting reply to the world, "that i can live life just like you without being hindered by a stupid disease"?
Thank you and wish you a very happy new yr, Andy(not my real name)
Response from Dr. Frascino
"We" are not alone. Remember there are over 33,000,000 of us currently on this planet cohabitating with this unwanted intruder. Each of us has our own unique story of how HIV screwed up our life's plans.
1. How do you make sense of everything? Well, not everything "makes sense." Remember life, love, sex and illness are all essentially unscheduled events! Using a game of cares as an analogy: You may not be able to change the hand you've been dealt; however, how you choose to play the cards is totally up to you. I'd suggest you begin by reading the information in the "Just Diagnosed" chapter that can be found on The Body's homepage under the Quick links heading. Take control of your situation. Don't let your situation control you. (See below.)
2. Regarding your parents, this is not their problem. It's yours. Certainly they will be disappointed and probably scared. You need to gain control and perspective on your new reality before you'll be able to give others a proper perspective on being "virally enhanced."
3. How do you face yourself in the mirror? I'd suggest doing so with open eyes, a clear head, and an optimistic attitude.
4. Focus on living well with HIV, not on being ill or suffering with HIV. Get informed. Work with a knowledgeable and compassionate HIV physician specialist. Build a strong support system. Read through the information on this site and in the archives of this forum. There you will find many courageous and inspiring testimonials.
I'm here if you need me, OK?
Be well! (I mean that!)
What is your secret? Jul 10, 2005
Dear Dr. Bob, Can you tell me how you keep such a positive attitude? Your upbeat attitude shows in your answers on this website. I have been positive 13 yrs. and have gone from very bad health to right now my viral load under 200 and cd4 201. These numbers are better than I have ever had, but I still feel awful and have many bad health issues going on. I cannot work which I hate and recently I have become hateful to my partner, family and everyone around me. I had unsafe sex one time 13 yrs ago due to a breakup with my partner after 7 yrs and became infected. We are together now and July will be our 22 anniversary. He does not have hiv. I was tested before we got back together. I also have the support of my entire family and all my friends. What is wrong with me? I do not want to fight this anymore. Don't worry I am not going to do anything stupid to hurt myself. I am just ready to stop treatment altogether. I have read you bio and know how you got hiv and just wondered how you are so upbeat. You should sell the secret. You were helping someone and got infected and I was upset about my break-up and got drunk and got it. I guess I have not gotten over my guilt or should I have a swift kick in the butt and be told to get over it. I have taken up enough of your time, but would appreciate your answer. You are a wonderful person for all you do for people. Thank you and bless you.
Response from Dr. Frascino
How do I stay positive about being positive??? Hmmm . . . well, I truly believe life is not measured by the number of breaths we take, but by the moments that take our breath away. I guess I've been lucky enough to have had (and continue to have) more than my fair share of those moments. I don't have a "secret," but rather a philosophy on life. I'll post a couple of responses from the archives in which I've addressed this question, OK? Interestingly, the first two I pulled up both use one of my favorite George Bernard Shaw quotes. I guess it bears repeating.
I wish you peace and health.
I love your smile. Apr 18, 2005
Hey Doc. I had a question to ask you about insertive oral but i have read through the archives enough to realize you have said all you need to say about this. Anyway i couldn't help but wonder how you keep such a great disposition on life. I mean come on dude you seem happy and funny all of the time. I think the main thing i have learned from you is that no matter what happens keep on keeping on and dont let life get you down until your 6 feet under.You have changed my perception of role models from athletes to people who have to face maybe the harshest disease ever. I hope you are around for a long time and continue to let that vivid personality of yours shine.PS i am not gay but you are my man. Holler at your boy>
Response from Dr. Frascino
I see no reason to holler. Rather, I'll just give a quote from George Bernard Shaw that reflects my positive attitude on being positively positive.
"This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one. The being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy . . . . Life is no brief candle for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations."
-- George Bernard Shaw
Dr. Bob, What about you? Sep 6, 2004
Hello Dr. Bob,
I want to start by simply saying thank you for all of the work that you do each day on this site. You bring so much comfort and knowledge to people. You are a very compassionate and caring man.
Perhaps it doesn't surprise you that we (your devote fans) are just as caring and concerned about you. Some of us can't help but wonder how you are doing with this disease. What is your status in terms of viral load and CD4? How do you find strength each day to go on? and what can we do for you to help you with this very trying time in your life?
You do not have to answer this if you do not want to. We just simply want to know about someone we love. And I mean that Dr. Bob.
Your Friend Always William
Response from Dr. Frascino
What a pleasure to read a question that isn't self-centered and related to a lap dance from a bisexual cross-dressing transsexual Mormon midget! There were so many of those types of questions coming in from New York City last week ahhh, the fools and fanatics of the GOP Convention!!!
The best word for my viral load and CD4 count at the moment would be "stable." How am I doing with the disease? Well, according to the statistics at the time the virus found me in January of 1991, I shouldn't even be here, so I'd say I'm doing quite well. Sure, at times I feel as though I'm living on borrowed time. As I've said before, I really do believe we measure life in the wrong dimension. A life shouldn't be measured merely in length, but rather in depth. In many ways, perhaps because of HIV and the depth of my experiences, I've never felt more alive.
I won't say that cohabitating with HIV is easy. It's not. The drugs that keep me alive are science's classic double-edged sword causing not only great benefits but also some not-so-great side effects. At times I can be so exhausted I need to take a nap before going to bed. Once asleep, I can sometimes have my very own version of a "wet dream," a drenching night sweat that has, on occasion, made me wonder if I should wear a lifejacket and flippers to bed. At times I look at our linen closet and refrigerator, and see that it's now decorated in "nouveau pharmacy" style. Mack trucks deliver my medications in Godzilla-sized containers. Like so many other virally enhanced folks, I've had my fair share of HIV-related complications, but I see no point in dwelling on them. In life, as in playing cards, you can't choose the cards you are dealt, but you can definitely choose how to play these cares. Perhaps that's the real secret of living well on borrowed time. I also freely admit having Steve (Dr. Steve in The Body's Tratamientos Forum) to share life, love, sex, and other unscheduled events makes me the luckiest guy on the planet.
Here is my two-rule manifesto for living well with HIV:
1. "This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one. The being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy . . . . Life is no brief candle for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations." George Bernard Shaw
2. Always remember the wise advice of rule number 1.
Thanks for your concern and friendship, William. I find that compassion and generosity, when freely given to those in need, is returned a thousand fold.
Stay well, William.
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