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At the end of my rope. Am screaming for help. You are the only person that can. Mommy of Three
Feb 1, 2010

Hello My Doctor Bob, This is Mommy of Three. You have no idea how many times I have tried to write this email to you, the only person I have to talk to and SCREAM for help regarding my HIV status. Please, Doctor Bob. I am BAWLING while I try to see what I am typing. I am a NOBODY. I was abused since I was extremely young by my father emotionally, physically and mentally. As he put it, he beat me like a man. I was sexually abused by a male and then a female cousin when I was just a child as well. Never told anyone until I was in my 30s. Have NO SELF ESTEEM. NONE. I am a piece of trash. My blessings besides my God are my three children and I can count on two hands how many people I have to count on including my beloved second husband who is helping me raise my three boys (their dad passed away and was the person who transmitted the virus to me and my oldest son) My husband loves us unconditionally when it comes to our illness. PLEASE DR. BOB! Help me! There is so much to say that there isn't enough room to write it all. I wish I had you infront of me to talk personally infront of, to hold me while I cried all of it out. I know I am blessed and thank my God every single day for being alive and for allowing me to raise my three kids, but for the past couple of years, Doctor Bob, I have turned into a hideous (even more than usual) filthy (not because of bathing cause I do that three times a day) disgusting human being if you can still call me that. I have been gaining weight like crazy even though all I eat is one meal a day, I have this HUGE HUMP... I can't even look at myself in the mirror. I wont look at myself in the mirror. I am in SEVERE PAIN and cannot find a pain management specialist, no one to help me. Only have Medicaid. I have not seen a dentist in 6 years because of discrimination and have gained about 60 pounds despite my not eating. I have a triple chin, so help me, I look like that blob in the movie Star Wars was it? (never really was into those movies but thought of a character that I believe I am similiar to or is it Attila the Hun?) Doctor Bob, I only receive 149.00 dollars from Social Security and we pay our rent through Section 8. I have tried seeing a therapist, but as I thought, they wound up telling me what "I WAS FEELING" although I kept telling them it was not what I was feeling. I took care of my deceased husband who died of Hep C and he died in my arms, I took care of my father in law who had cirrhosis of the liver for 5 years, I currently take care of my 87 year old grandmother, my husband who had two abdominal aortic aneurysms and a dissected aorta from his neck down to his legs, take care of my mother in law who is diabetic and my mom not to mention my three kids, but am having extreme difficulty doing it now because I am so very depressed I can't get out of bed. I wish I had the monies to order from one of those diet food places to at least maybe start getting some self esteem back by losing all this weight, but I so want to be fit and confident, I want these severe pains to go away and I do not want to be depressed any longer. I wish I had a fitness trainer but of course, all of these things are just dreams. Do you know what I wish for the most besides, health and having my boys and family around me always? (ALSO HELPING THOSE IN NEED OF COURSE) Having a van that I can transport all my sick family members including myself, to and from doctors appointments. I lost mine when a truck (only in Texas) hit my van, split it in half and took off. Despite having his license plate fall off (that is how hard he hit us) they claim, he was free and I was to receive no compensation no way no how for our loss. Despite the fact that we all know how blessed we are that we did not lose our lives, I really want to be able to take my kids... (can't stop bawling...) for outings just to forget our troubles... even if for a while... Thank You My Loving and Caring Doctor Bob for listening (reading) what this huge blob had the courage to write finally. That you even read it means so much to me. I LOVE YOU AND AM BLESSED TO HAVE YOU THERE FOR ME... FOR ALL OF US... Love you forever, Mommy of Three

Response from Dr. Frascino

Hello Mommy of Three,

That was a lot of information, but I didn't see a specific question, but rather just a cry for help!

Regarding your pain, your HIV specialist should be able to refer you to a pain clinic or HIV-knowledgeable neurologist. Likewise, your HIV specialist or local AIDS service organization should be able to recommend a dentist who doesn't discriminate.

As for the weight gain, that's a difficult clinical problem to manage. There are no FDA-approved drug therapies for lipohypertrophy. Treatment with recombinant human growth hormone (rHGH) has demonstrated some improvement in lipohypertrophy in clinical trials. There has also been some promising results form clinical trials using growth hormone releasing hormone (GHRH). Check with your HIV specialist to see if there are any clinical trials in your area in which you should consider participating.

Finally, "hump" can be treated with liposuction, but it sometimes recurs.

Mommy of Three, it's also important you increase your support network. Check with your local AIDS service organizations for support groups and other services that might be of benefit. You could even try some "online" support services.

I do realize you had essentially no choice in the very difficult hand that life has dealt you (abuse, HIV, side effects, etc.). However, how you choose to play the cards you've been dealt is totally up to you. Don't let HIV win by ruining your life and/or your happiness.

Let's all be here for the cure, OK?

Dr. Bob

What options are available for someone whose buffalo hump is so huge, it is deforming! (BUFFALO HUMP, 2009) Aug 27, 2009

Hello to my favorite Doc. This is Mommy of three and I hope to find you are doing wonderfully and as happy as you can possibly be. I am finding that my buffalo hump has grown so big that despite being taken off of one protease inhibitor and remaining only on Kaletra is not helping at all. It is making it difficult to sleep, and as for clothing, there is NOTHING that hides it. I find even strangers coming up to me to ask what is wrong with me. (I am SO DEPRESSED over this despite feeling so blessed I am alive and raising my three beautiful children.) I am only on Medicaid and now reside in Texas, but could you please educate us on the latest data regarding this horrible side effect and what has been found to be promising regarding hopefully removing it permanently? I literally feel like there is a person sitting on my shoulders constantly that I am going to very soon need to get a Social Security Number for! Thank you, thank you, thank you for always taking the time to educate and comfort ones such as myself that are going through so many changes due to this incurable illness. Love you now and forever, Mommy of Three

Response from Dr. Frascino

Hello Mommy of Three, Unfortunately we don't clearly understand the pathophysiology (cause) of buffalo humps and consequently we do not have effective treatments available. Certainly the problem is most prevalent in HIVers on antiretroviral medications. The HIV meds that have been most closely associated with buffalo humps are protease inhibitors. However, buffalo humps can occur in HIV-negative folks and also in HIVers on a wide variety of different HIV regimens. The most effective treatment at present is ultrasound-assisted liposuction. With enough medical justification some insurers (including Medicare) will pay for the procedure. Difficulty sleeping and significant neck pain would need to be documented in your medical chart. Also, the dorsal cervical fat pad enlargement (buffalo hump) often tends to recur even after successful liposuction. Diet and exercise have only a very limited effect. Growth hormone and related drugs may be somewhat helpful but are expensive and can have considerable undesirable side effects of their own. Needless to say, currently we don't really have good options for treatment. Stay tuned to The Body. We'll keep you posted as new and better treatments become available. Until then let's hope neck scarves are the next wave in fashion! Be well. Hugs to the kids. Dr. Bob

Disclosure Issue Part 2- Mommy of Three Jun 12, 2009

Thank you my dearest Doctor Bob! When I have most needed you, you have always been the one person, the only person that I can count on for help and understanding regarding this disease. Is there any place or anyone that you can think of, that may offer specific information regarding what TX law is regarding Protecting a parents rights from a Doctor threatening to disclose to a minor child their HIV status without their consent? And as you commented, being Texas (Oh, How I miss NEW YORK!) isn't there a way to know if a Physician who tries to undermine a Parent's authority can have legal ramifications because of it? The hospital Patient Relations Person told me that she consulted the Hospital Legal Team and that they said there are no laws. How could that be possible? No laws?! (Yes my dearest, I know... We are talking about Texas) I BEG YOU, please help me find an answer soon, as they are threatening to tell him on his next visit without my consent and I need a legal leg to stand on. What age, if this act is permissable, would the law allow? I thought Parent's have rights over their children until the age of 18? I haven't slept trying to find answers online, even pleading with online Law Firms that would otherwise charge (again, am raising my three children on Social Security) but as of yet, no one has replied. Any help you would offer will be appreciated more than words could say. Thank you again, my kind Doctor, for your loving, considerate guidance and support. Mommy of Three

Response from Dr. Frascino

Hello, Sorry, I am a physician, not a lawyer. I have provided you with my medical advice and that is all I have to offer. I hope it helps.

Dr. Bob PLEASE HELP ME!!!!!DISCLOSURE ISSUE!!!!!MOMMY OF THREE!!!!! Jun 9, 2009 Dear Dr. Bob, Please help me. I went to take my son today to his ID Doctor and his Specialist threatened me by saying that if I did not tell my son his status, they would. The Doctor then came in and IN FRONT OF MY SON without my consent, told me, "You need to start telling your son his status now." He then turned to my son and asked, "Do you know what you are sick with?" My son lowered his head and said, "No, but my mom explained that I must take my meds every day." He then reiterated that I must tell him and that he was going to speak with me about this again soon. I was ambushed and feel violated. I currently reside in Texas. Do you know Dr. Bob what Texas law says regarding this issue? Do they have the right to disclose to my son without my consent and if so, at what age can they legally do so? PLEASE DOCTOR BOB! I CAN'T STOP CRYING. IT WAS DEVASTATING. I WISH, WITH ALL MY HEART THAT I COULD CONTRIBUTE TO YOUR ORGANIZATION, but living on SSI alone and raising three children... well... I know you understand. What can you tell me about this doctor? I anxiously await your reply and pray you can help me. Thanking you now and always for the blessings that you have always given me through your replies. Love you... Mommy of three Response from Dr. Frascino Hello Mommy of Three, Texas is a whacky place (after all Bush lives there, right?), but I doubt there are any laws about a doctor disclosing a diagnosis to his patient. However, I do agree this was handled badly. The specialist should have offered to help you explain what's going on to your son in terms he understands and in ways that won't frighten him. I don't know how old your son is, but I encourage parents to begin telling their HIV-positive kids as soon as possible. The words HIV/AIDS don't have to be used early on. However, the concept of a germ is helpful. For instance, you could discuss how when Grandma gets a cold it's due to a "germ" and she may have to take medicine to get better. Then move on to discuss that your son has a germ too and he needs to take medicines and have blood tests to get better and stay healthy. After that you should be prepared to answer any questions the youngster asks with direct honesty. You should give just the information that he asks for and not an entire dissertation on the pandemic. Just honestly and straightforwardly answer all his questions. I understand the desire to protect kids from this reality for as long as possible. However, ultimately they need to know the truth and I've found the best way is to introduce that truth early on. This prevents the youngster from formulating his own thoughts about his medications or why he is different from other kids, etc. Pediatric HIV specialists are usually excellent in knowing exactly how to talk to kids, based on their age, and should be able to help you get your youngster up to speed on what's happening in a nonthreatening way. Hope that helps. Dr. Bob

Is switching from Kaletra to Isentress wise after latest data? Feb 15, 2009

Hello Dr. Bob and as always, thank you for your input. I received the following article and was wondering what you thought, as I mentioned before, they are wanting me to stay on Kaletra and Viread, stopping my Invirase and instead adding Isentress in the place of Invirase due to excessive body fat redistribution (pain in the left flank continues but they think it is Kidney stone related because my Creatine comes back normal so she says there is no danger. I on the other hand am still very worried about it as pain is going on for months. Is there any other test they can run besides checking the Creatine to try and assess what is causing my pain?)I am resistant to NRTI class except Viread. (I am doing very well still with PI class, have an undetectable viral load and T-cells over 1000.) I am taking your advice regarding seeing an HIV Specialist who can help me, so thank you for that as well. Here is the article. I look forward to your input as always and send you my love and gratitude always. February 9, 2009 Kaletra-to-Isentress Switch Helps Lipids, but With Viral Rebound Risk by Tim Horn Patients with undetectable viral loadsbut struggling with elevated lipidswhile on a Kaletra (lopinavir and ritonavir)-based regimen are likely to see marked improvements in their cholesterol and triglyceride levels upon swapping Kaletra for Isentress (raltegravir), but they may be less likely to keep their viral loads below 50 copies. This was the joint finding of the halted SWITCHMRK 1 and 2 studies, reported by Joe Eron, MD, of the University of North Carolina in Chapel Hill and his colleagues on Monday, February 9, at the 16th Conference on Retroviruses and Opportunistic Infections (CROI) in Montreal. Another study reported on Monday by a team of French researchers indicates that treatment-experienced patients switching from Fuzeon (enfuvirtide) to Isentress were no more likely to see rebounds in their viral loads, compared with those remaining on Fuzeon. The SWITCHMRK clinical trials, also known as Merck-sponsored studies 032 and 033, were designed to evaluate the safety and effectiveness of switching to integrase inhibitor Isentress in patients with well-controlled HIVdefined as a viral load below 50 copieswhile on a Kaletra-based regimen. In these trials, 348 patients in study 032 and 354 patients in study 033 were randomized to either remain on their Kaletra-based regimen or switch to Isentress (400 mg twice daily) in combination with their other antiretrovirals. The major objectives, or endpoints, of the studies included changes in fasting lipidsincluding total cholesterol, triglycerides and bad non-HDL and LDL levelsat week 12, as well as the proportion of patients with viral loads below 50 copies at week 24. If the percentage of patients with viral loads below 50 copies was similar in both groups, Isentress would be considered non-inferior to, or statistically no worse than, Kaletra, according to the particular study designs chosen for SWITCHMRK 1 and 2. Not surprisingly, patients who switched to Isentress experienced significant decreases in cholesterol, triglycerides and non-HDL levels in both studies. In SWITCHMRK 1, for example, non-HDL levelstotal cholesterol minus any good HDL cholesterol in a blood sampleat study entry were 158 milligrams per deciliter (mg/dL) in the Kaletra group and 166 mg/dL in the Isentress group. After 12 weeks, non-HDL cholesterol increased by 2 percent in the Kaletra group but decreased by 15 percent in the Isentress group. Switching to Isentress also had a profound effect on triglyceride levels. In SWITCHMRK 2, triglycerides averaged 219 mg/dL in the Kaletra group and 210 mg/dL in the Isentress group at study entry. After 12 weeks, levels increased by 8 percent in the Kaletra group, but fell by about 42 percent in the Isentress group. Isentress did not, however, demonstrate non-inferiority with respect to maintaining viral load suppression. In the SWITCHMRK 1 study, 87.4 percent of patients who continued on Kaletra maintained viral loads below 50 copies for 24 weeks, compared with 80.8 percent of patients in the Isentress group. In the SWITCHMRK 2 study, 93.8 percent of patients who continued on Kaletra maintained viral loads below 50, compared with 88 percent in the Isentress group. An analysis combining data from both studies found that 94 percent of patients in the Kaletra groups, compared with 88 percent of patients in the Isentress groups, had viral loads below 50 copies at week 24. Merck has halted SWITCHMRK 1 and 2 based on these results and is currently conducting a thorough analysis of both studies to better understand the results. A possible reason for the somewhat poorer viral load control in the Isentress group, Eron explained, may be due to the fact that many patients in the studies who had viral load rebounds were treatment experienced. Twenty-seven of the 32 patients (84 percent) who saw their viral loads rebound after switching to Isentress in SWITCHMRK 1 and 2 had been on other regimens before initiating Kaletra. In fact, 18 (66 percent) of these patients reported a history of virologic failurepossibly due to the emergence of drug-resistant viruson earlier regimens. A similarly designed study involving highly treatment-experienced patients, presented at CROI by Nathalie de Castro, MD, of the St.-Louis Hospital in Paris and her French colleagues, explored the safety and effectiveness of switching off Fuzeonan injectable fusion inhibitorto the easier-to-take Isentress. In this clinical trial, dubbed INSERT SC10, switching to Isentress was associated with non-inferior antiviral activityonly one patient in each group experienced virologic failure during the 24-week study. Mommy of Three

Response from Dr. Frascino

Hello Mommy of Three, I just returned from the CROI meetings in Montreal where these reports were presented. None of them specifically addresses your concern about body-fat redistribution; although lipid abnormalities (which were addressed in the SWITCHMRK-1 trial) and body-shape changes may be related in some patients. My assessment and advice remain unchanged. (See below.) Regarding flank pain, there are a variety of tests that may be ordered to evaluate the problem. However, the first step is to be evaluated (completely history, review of laboratory studies and physical examination) by an HIV specialist physician. She will then order whatever tests are indicated. Tenofovir can harm kidneys; however, this is usually seen in folks who already have kidney problems. Creatinine is one measurement of kidney function. If one's kidneys aren't functioning well, then tenofovir may not be the best drug. There are other drugs that can harm kidneys, such as non-steroidal anti-inflammatory drugs (ibuprofen, naproxen, etc.). HIV-associated nephropathy (HIVAN) is one of the most worrisome kidney diseases seen in HIVers. It, like several other diseases that can affect the kidneys (diabetes, hypertension), is seen much more frequently in blacks. The first clue to HIVAN is protein in the urine. Hope that helps. Dr. Bob To my favorite Doctor Bob... Mommy of 3 Feb 14, 2009 Hello Dr. Bob. I hope you are doing wonderfully well. I needed your input please. I am on Kaletra, Invirase and Viread. I am undetectable and my T-Cell count is over 1000. I am suffering from really bad kidney pain on my left kidney. I recently had surgery to remove a stone. I still continue to have really bad kidney pain. My ID nurse says they check my creatine and it is always normal. About a week ago, I went back to the ER because of severe pain on my left kidney and after a CT scan, they said there were no stones. I have read that Viread can cause bad kidney problems that cannot be reversed so I am greatly concerned. Now my doctor wants to leave me on Kaletra and Viread and is adding Isentress in hopes it will help my fat redistribution problem. She says of the class that has Zerit and Epivir, I am very resistant to almost all except Viread. I am still good in the PI's and other drugs. Is there any other test that can be done to see if Viread is causing this pain? I do not want to run the risk of losing my kidney. Secondly, is that a good combination as I do not want to risk having my numbers go up again. I also want to ask, if by some chance my numbers go up, can I get back on the meds I am now and will they work despite the fact that my numbers can go up? Currently being on 2 PI's is also causing extreme fat redistribution, but I would rather continue to look like a sick camel :( instead of running the chance of having my numbers go up. I am so confused and just want what is best for me, but I am petrified. What do you know about all of this? Anxiously awaiting your reply and sending you lotsa love, hugs and kisses always. Mommy of three Response from Dr. Frascino Hi, These types of complex medical problems and treatment decisions are difficult to address over the Internet, as I do not have access to your complete medical file, laboratory tests and a physical examination. Consequently the best I can offer is some suggestions to consider: 1. Rather than see the "I.D. nurse" you need to be evaluated and examined by an HIV specialist physician. 2. You need a complete evaluation to ascertain the exact cause of your left flank pain (this may or may not be kidney related). 3. If you do have certain types of kidney disease, Viread is not the drug for you. 4. Whether you can recycle drugs you previously used successfully depends primarily on your resistance tests (phenotype/genotype). 5. One regimen to consider (depending on resistance profiles, etc.) that avoids dual PIs and Viread would be Isentress (integrase inhibitor), boosted Prezista (PI) and Intelence (non-nucleoside reverse transcriptase inhibitor). Hope that helps. Dr. Bob

Birth Control causing higher levels of HIV? Is this really so? Sep 8, 2008

Hello to my favorite doctor! This is mommy of three and I cannot belive what I just read. The following article terrifies me because I was put back on oral contraceptives due to my excessive bleeding etc. and now I am wondering if I am in serious trouble. I have been undetectable for way over 6 months and have a high T-cell count so did I jeopardize all my hard work, sticking to a strict HIV drug regimen so that I can remain this way for as long as I can? Should I stop taking contraceptives because of this article and if I did stop taking contraceptives, would it allow my undetectable status to return on the same drug regimen or is it now a lost case and must look for a different drug regimen? I anxiously await your reply. Sending you as always my deepest respect and love, Mommy of three. Please see article below: Hormonal Contraceptives and HIV Disease Progression There is a possible link between hormonal contraceptives and faster HIV disease progression, according to a research review article in the October 1 issue of Clinical Infectious Diseases (CID). The authors caution, however, that more research is needed to either confirm or deny the connection. Concerns about the impact of hormonal contraceptives on HIV disease began with studies of the monkey version of HIV, simian immunodeficiency virus (SIV). Researchers found that female monkeys treated with progesterone, a hormone used in contraceptives, were far more likely to become infected when exposed to SIV than monkeys not treated with progesterone, and that when they became infected they became sicker and died much more quickly. A more recent study involving women in Mombasa, Kenya, found similar results to the SIV data. Women who received an injectible hormonal contraceptive were more likely to become infected with chlamydia and HIV than women who did not receive a hormonal contraceptive. Moreover, the women who received the hormonal contraceptive had a higher viral load after becoming infected and were more likely to die during an eight-year follow-up period. Two other studies, one in Africa and one in the United States, did not find any such associations. The authors of the CID review article, Elizabeth Stringer, MD, and Erik Antonsen, from the Centre for Infectious Disease Research in Lusaka, Zambia, explain that biological mechanisms could potentially explain the increased risk of HIV transmission and disease progression among some women using hormonal contraceptives. For example, when blood levels of these female hormones are high, the immune system often responds differently to infection than when blood levels are lower. While women taking antiretroviral (ARV) drugs would not likely be affected by higher estrogen and progesterone levels from hormonal contraceptives, the authors speculate, it is possible that women not taking ARV therapy may be.

Response from Dr. Frascino

Hey there Mommy of Three, You can relax. Your fears are completely unwarranted. Please note the last paragraph, which states: "While women taking antiretroviral (ARV) drugs would not likely be affected by higher estrogen and progesterone levels from hormonal contraceptives . . . ." That's you! You're on antiretrovirals and consequently are not at risk. It's also important to note that these findings from Mombasa, Kenya were not confirmed by two studies done in the United States. So stop worrying! I see absolutely no cause for alarm or even mild concern. Be well. Stay well. Hug the kids for me. Dr. Bob

Petrified of what ifs PLEASE HELP Mar 21, 2008

Hello to my favorite doctor! I pray you and the rest of your family are doing well. I miss very much hearing from you but always appreciate what I learn in your forum. I desperately need your help. I recently had a LEEP procedure done and after almost three weeks, my husband who was acting like we had not had intercourse in a year, was asking for us just to "cuddle" and needless to say, had intercourse. What happened next is why I am sick to my stomach. When I wiped, I found some blood and although he said he did not see any on his penis,obviously he came in contact with it. I AM PETRIFIED he is now sick as well. I immediately that very moment contacted the clinic where I get my care and left a message for the social worker to call me. I spoke to her that very morning and explained what happend. She said that she would have the only doctor that would be in call me as soon as he could. He never did. She called me back today to tell me it was now too late to do anything and that he should be tested in three months. I was seething with anger. I did not take him to my local ER because the couple of times I was there and was honest enough to tell them my status, they treated me like I was an alien from another planet and wore space suits just to take my vitals. They had no idea how to handle me or my situation and blamed me for getting myself into my situation. They quickly then proceeded to state that the reason I had been there was for a stomach ache and discharged me immediately so as not to have to deal with me anymore. I am so sick of this doctor. You have advised me in the past to be brave and go out there and make them have to deal with me, but I keep running home with my tail in between my legs praying that no one in my neighborhood finds out I am sick. What are the chances he is sick doc? How high are the percentages? I have been undetectable for over 6 months and have a T-Cell count of over 1000, but I figure that the risk is double as bad because he came in contact not only with blood but fluid. I know that he still runs a risk and that even if it is 1% it is a risk but as far as statistic with the information I have provided, what are the chances? He will not get tested and all I keep thinking about is losing him like my previous husband who knowingly infected me but did not tell me he was infected. He died in my arms and... I cannot take this stress. PLEASE. Will you bless me with a reply? Looking forward to hearing from you and wishing you a wonderful day. Mommy of Three

Response from Dr. Frascino

Hello Mommy of Three, I'm assuming the "cuddle"/intercourse was unprotected. The estimated per-episode risk for HIV acquisition from unprotected insertive penile-vaginal sex with a partner confirmed to be HIV positive is 5 per 10,000 exposures. The presence of blood might increase that risk somewhat. However, that you have had an undetectable viral load on antiretroviral medication for over six months would significantly decrease the HIV-transmission risk. I should also point out that population-based estimated-risk statistics should not be interpreted as an actual risk statistic for any one specific coupling. (See below.) At this point the statistical odds are certainly very much in your husband's favor that he did not contract the virus; however, HIV testing at three and six months is warranted. Your degree of anxiety is a reflection of your previous loss and not really warranted based on the actual degree of real risk associated with this recent exposure. Regarding your local hospital and their staff's unprofessional behavior, I would recommend you write a letter to the hospital CEO and send a copy to your congressional representatives. Such discrimination should not go unchallenged. If they treat you that way, they are likely to do the same to others. Demand that the offending physician and/or ER staff be counseled or disciplined. One other thing to consider is talking to your HIV specialist. You can mention your experience at the ER. If the specialist is on staff at that hospital, he or she may help in educating their colleagues on the ER staff. Also ask your specialist about a PEP starter pack for your husband in case of accidental significant exposures. PEP is most effective if started as soon as possible and no later than 72 hours after an exposure. Finally I encourage you not to live your life in fear. Being HIV infected is challenging enough without adding all the negativity that comes with constant fear and anxiety. Good luck. Be well (not petrified!). Dr. Bob HIV STATISTICS Sep 13, 2007 Doc, Ive written to you many times over the past 3 years and youve answered several of my questions. Thank you! What I really need to know now is how accurate are your statistics about oral and anal sex. Is it really 1 per 10,000 for oral and 50 per 10,000 for anal? Im trying to explain to my negative partner exactly what our specific risk is. Neither one of us are math whiz-kids but this seems reasonably straight forward. He could expect to become infected once for every 10,000 blowjobs. Right? Thanks Dr. Bob Response from Dr. Frascino Hello, "He could expect to become infected once for every 10,000 blowjobs. Right?"??? Well actually no, that would be a wrong conclusion to draw from those statistics!!! I've covered this topic numerous times in the past, but I know HIV statistics can be a confusing topic. So even though this questions has now become a QTND (question that never dies) with an ATNC (Answer that never changes), I'll try to explain the limitations of these statistics once again. The statistics I quoted are "estimated per-act risk statistics for acquisition of HIV by various exposure routes" published in a CDC document. These statistics were generated by combining a variety of published reports and did not control for many different potential variables that occur in different populations and among individuals. In other words, these statistics are primarily useful in determining relative risk, but not specific risk or actual risk for any individual. The reason for this is that any specific sexual coupling has a wide variety of variables to take into consideration when attempting to quantify specific HIV-transmission risk. These would include both viral factors, such as viral strain and viral load, as well as host factors, such as immune integrity, concurrent illnesses, circumcised/uncircumcised, genetic susceptibility, etc. Add to this nonspecific factors/extenuating circumstances, such as roughness of the encounter possibly causing trauma to mucous membranes, menstruation, etc., and perhaps you will begin to see the difficulty in providing transmission-risk statistics for any specific coupling. Also I should point out we cannot conduct prospective controlled epidemiological studies to try to account for theses variables, as that would be unethical. There are some published reports that address risk associated with specific sexual practices that control for some variables, but these studies usually have relatively small sample sizes and again are not applicable to everyone's specific situation. Another reference that I quote frequently is http://hivinsite.ucsf.edu/InSite?page=kb-07-02-02 (SAFER SEX METHODS). If you review the specific epidemiologic studies in this well referenced report, you'll get a better understanding of the complexity involved in these issues. So why do I quote the statistics that I do? Good question! The main reason is that I am constantly barraged by anxious wrecks desperately trying to quantify their risk. I use the CDC statistics, because CDC is a very conservative organization and the numbers they generated are an amalgamation of many studies. They also standardized the relative risk to a common denominator ("10,000 exposures to an infected source"), which allows us to discuss relative risk. For instance, unprotected receptive anal sex is approximately 10 times more risky than unprotected insertive penile-vaginal sex, which in turn is approximately 10 times more risky than unprotected insertive oral sex. I hope that this will help clarify the limitations of these estimated HIV-transmission risk statistics. The bottom line is really much more concrete and easy to comprehend. If someone has placed himself or herself at risk for HIV, he or she should be HIV tested. Period. End of story. I can just about hear all the paranoid panicky worried wells beginning to type away furiously, providing me with a blow-by-blow of their latest blow-by-blow and begging for me to quantify their specific risk. But unfortunately, unless the other person they were having sex with was me, I will not have enough specific detail to give them an accurate response. Hell, even if it were me, I still might not be able to give a completely accurate risk quantification! Dr. Bob

Have I told you lately that I love you... THANK YOU Mar 29, 2008

Hello to my favorite doctor! THANK YOU SO VERY MUCH for taking the time to answer me. Words cannot sincerely express how much I appreciate you and all you do. I must tell you though (are you sitting) that I had already done what you had advised and contacted my clinic which happens to be the Health Department (no afiliation with the hospital by my home)and since there were no doctors in except for one that would be arriving later that day, I spoke to the case worker for the clinic and expressed the urgency and she not only had the nerve to tell me (the next day because she did not even return my call that day) that she did not relay my message to that doctor because "he was too busy" but gave me inaccurate information telling me that it was too late anyways to do anything because 24 hours had already gone by! And people wonder why I am so paranoid about divulging my disease! I have been literally persecuted and thrown out in the street with my three childen (when they were babies and their father had died) because the landlord found out my condition, chased out of neighborhoods, and treated like I had leprosy at health facilities that you would think would know better. You my beloved doctor make me feel sort of "normal" if that is possible despite my feeling I am disgusting and dirty. That is why I live my life petrified. You are a breath of fresh air and again, I need you... we need you and how awesome it is to know that I have you on my side... our side... to talk to and get understanding from not to mention the outstanding, accurate and compassionate information you provide and let us not forget the laughs that you help errupt from deep inside my soul despite the pain I feel, causing tears of joy to at least temporarily forget that I am this sick outcast. You are so loved... THANK YOU AGAIN and please remember that you can count on me to be there for you if you need me anytime. Loving you much, Mommy of three

Response from Dr. Frascino

Hello Mommy of Three, You're welcome. I do hope one of these days your self image of being a "sick outcast" changes. Having a virus any virus should never be a reason for shame. I realize your particular situation has arisen from your horrific personal experiences. Despite the unjust and reprehensible situations you have had to endure, I would still advise you stand tall, hold your head high and not allow yourself to be victimized, slighted or abused by anyone. Being a wonderful "mommy of three" is an accomplishment in and of itself that should engender respect and admiration. You certainly have mine. Hugs to the kids! Dr. Bob

What would you do? Sep 23, 2007

Sending you as always lots of love and appreciation for all you do. This is mommy of three and I am writing to you in so much pain. For the past couple of months, I have been experiencing severe pain in what seems to be my left kidney and have had many UTIs. Two weeks ago, the pain was excrutiating and I was taken to the ER. After a CT Scan, it was determined that my tube was dialated and they assumed I had passed a kidney stone. They gave me antibiotics because I once again had a UTI and gave me pyridium for pain. Today I went to see my HIV Specialist because for about six months I have been having severe pain in my joints to the point where I try to pick an object up and the pain shoots up my arms causing me to drop the object as well as for the kidney pain that wont go away. I have been on Kaletra, Viread and Zerit for years now. In the Zerit class, it is the only drug I am not resistant to as well as the Viread. He told me to stop my Zerit, put me on Fortovase and left the other meds the same. I am researching Fortovase and it seems that it is no longer available. Is that so? Also, what do you think about the new combination? He claims it will stop my severe wasting and does not have any significant side effects as well as hopefully it will also resolve my neuropathy. He had my blood drawn and had me leave a urine sample to determine if my kidneys are not working properly. He said it seems like I have a kidney blockage and I was also diagnosed two months ago with having fibromyalgia. The results should be in on Thursday and I am going back to get those results. All of this after months of clinic visits in tears explaining my symptoms and hearing so many different diagnosis. The new combination has me concerned as I do not want any additional fat redistribution problems. My viral load is still undetectable and my T-Cell count is over 1000 since I added Selenium once a day. I do not want to risk having those numbers change for the worse and am wondering about this combination. You know as well that I am fighting cervical cancer and now, anal cancer as well because of HPV. Sometimes Dr. Frascino, I feel so depressed battling all of these things, but am so grateful to be alive for my three beautiful children. I have trust issues, but with you, I feel like I have this big brother that whenever I feel down or confused as to what the right thing to do is, I can turn to him and trust his advise completely. As the commercial says and in this case I totally agree... having that is... priceless... Sending you lotsa love, hugs and kisses as always from this NY mommy of three living in Texas.

Response from Dr. Frascino

Hello NY Mommy in Texas, Your situation is indeed complex and it would be imprudent for me to try and micromanage it without the benefit of your medical file and a physical exam. Consequently, I'll just provide some general ideas on how to proceed. 1. I worry somewhat about folks with renal (kidney) problems taking Viread. Viread can have significant kidney-related side effects. In light of your repeated problems and abnormal CT scan, I would advise a consultation with an HIV-knowledgeable nephrologist (kidney specialist). I would also consider switching off Viread. 2. Regarding lipoatrophy, thymidine analogue drugs D4T (Zerit) and AZT (Retrovir, Combivir, Trizivir) have been implicated. Switching off and/or avoiding these drugs should slow down further lipoatrophic changes. I suggest you peruse the information in the Lipoatrophy Resource Center that can be easily accessed on The Body's homepage. 3. Zerit and other "d" drugs (ddI, ddC) have been linked to peripheral neuropathy. Stopping them may decrease further nerve damage, but may not resolve the damage that's already been done. 4. Regarding saquinavir, there may well be much better options for you to consider. (Fortovase has been discontinued but Invirase, the preferred formulation of saquinavir, is still available.) But that would depend on your resistance profile (genotype and phenotype). There are also several new agents with novel mechanisms of action integrase inhibitors, CCR5 inhibitors that might be very helpful in your situation. Consider getting a second opinion from another HIV specialist. You have an excellent CD4 count and since your plasma viral load is undetectable, it should be safe to switch from one potent fully suppressive regimen to another. I do believe there are better, less toxic, options for you to consider. Good luck. Dr. Bob

Thanking you from the bottom of my heart Jul 8, 2007

Hello again, this is Mommy of three thanking you from the bottom of my heart for your wonderfully informative guidance. You are literally the only person I have to turn to and am so grateful to know that you are there in my corner! Although mere words do no justice, THANK YOU so much for always being there when I feel lost and alone. Sending our love and appreciation always to you from your "family" from New York residing in Texas!

Response from Dr. Frascino

Hi, You are most welcome. Dr. Bob

Desperately want to make right right decision for my son... Dec 20, 2006

Hello again Dear Dr. Frascino. I would like to first ask about your brother and mother and pray that they are all doing as wonderfully as can be expected as well as you dear friend? I always feel blessed to have such an educated, sympathetic and well informed friend to turn to when we have any matter especially serious ones that concern us and we need guidance on. I have a situation that I pray you can help me with. My son who is on Kaletra, Zerit and Ziagen, I mentioned to you before, has a high cholesterol/triglyceride level. I tried my hardest to help cut back the amount of fat etc. in his diet, added Omega 3 fish oil twice a day as well as exercise. His latest lab work was done once again fasting and his cholesterol went down from 220 to 187 but his triglycerides continue to be in the 300s. This continues to worry me so much. I researched a number of websites and I found that it was also suggested to add garlic filled gel capsules to the diet and it would help in bringing down the triglycerides. His doctor had also suggested Niacin, but then seemed to change his mind saying he thought he had suggested that to us before, but when I asked him to elaborate further, he said to forget it, he had only meant it for a different patient of his. I then researched that, and found wonderfully positive information about how that too helps in the lowering of cholesterol and triglycerides. I previously asked online what was suggested about the amount of ml I should give my son as far as the garlic was concerned and was told not to give it as it lowers his meds. All the research I have done said garlic affects meds like Invirase, but never read that the meds he is on have any negative effects if garlic is taken. Can you please advise me of anything you recommend regarding this and also of anything you know regarding Niacin? Is Niacin also safe to take and if so, how much should I give my son who is 12 years old and weighs 88 pounds? How many ml of garlic supplements may I give him if it is possible for him to take it? What else would you suggest I can do to help him lower his cholesterol/triglycerides? Can I also give natural garlic in lets say food and if so, is there a limit? Thank you so very much as always for your time and attention you give to others like me. No matter what we go through regarding this illness, it is a wonderful feeling to have you standing right there next to us. I wish you a wonderful day and please send our love to your family and a special hug and kiss from me to you and your three "nephews" too. :) Love, Mommy of Three

Response from Dr. Frascino

Hey Mommy of Three, You pose a number of questions that would require considerable discussion to address completely. This type of very specific discussion is best when it's between you and your son's HIV specialist, as there needs to be a give and take of information, rather than just the general type of comments I can provide in this type of forum. But I'll certainly try to provide you with some direction nonetheless. The drop in your son's cholesterol from 220 to 187 with the dietary interventions, Omega 3/fish oil and exercise is great! Congratulations! Keep it up! Triglycerides in the 300s are not excessively worrisome, especially considering his age and presumed lack of cardiac risk factors. I tend to worry much more about cholesterol than triglycerides in these kinds of situations. There are prescription-strength medications that can be used to lower both cholesterol and triglycerides (Lipitor, for example) or just triglycerides (Lopid), but I don't feel either of these is warranted yet for your son. (They may even be contraindicated, depending on other medical factors or test abnormalities, etc.) Niacin can be used to treat dyslipidemias (abnormal levels of fats in the blood); however, it can cause side effects ranging form skin flushing to early signs of diabetes. The extended-release formulation may have fewer side effects. At this point, once again, I do not feel adding niacin to your son's regimen is worth the risk. Garlic has been shown to decrease levels of protease inhibitors when used in significant doses. This is generally not a problem for the amount of garlic used in cooking. At this point, I would not recommend any specific intervention other than diet, exercise and Omega 3/fish oil supplements for your son. If available, you could ask his HIV doctor for a referral to an HIV-knowledgeable nutritionist who could help fine tune his nutrition while reviewing healthy low-fat dietary options for him. Ultimately, other more significant interventions may become warranted. They would include either treating the elevated blood lipids or switching off his protease inhibitor. For now, those interventions are not necessary. I understand your fears, but they are unwarranted. I would continue to follow his fasting blood lipids every three to four months while maximizing the interventions mentioned above (diet, exercise, Omega 3, fish oil, etc.) and watch for trends. An 88-pound 12-year old with triglycerides in the 300s is not a cause for alarm, OK? Thanks for asking about my family. Mother is fine; my brother, not-so-fine, but still alive and, as we frequently say to each other, "every day above ground is a good day." Happy Holidays to you and my "nephews." Dr. Bob

Desperately want to make right right decision for my son... Dec 20, 2006

Hello again Dear Dr. Frascino. I would like to first ask about your brother and mother and pray that they are all doing as wonderfully as can be expected as well as you dear friend? I always feel blessed to have such an educated, sympathetic and well informed friend to turn to when we have any matter especially serious ones that concern us and we need guidance on. I have a situation that I pray you can help me with. My son who is on Kaletra, Zerit and Ziagen, I mentioned to you before, has a high cholesterol/triglyceride level. I tried my hardest to help cut back the amount of fat etc. in his diet, added Omega 3 fish oil twice a day as well as exercise. His latest lab work was done once again fasting and his cholesterol went down from 220 to 187 but his triglycerides continue to be in the 300s. This continues to worry me so much. I researched a number of websites and I found that it was also suggested to add garlic filled gel capsules to the diet and it would help in bringing down the triglycerides. His doctor had also suggested Niacin, but then seemed to change his mind saying he thought he had suggested that to us before, but when I asked him to elaborate further, he said to forget it, he had only meant it for a different patient of his. I then researched that, and found wonderfully positive information about how that too helps in the lowering of cholesterol and triglycerides. I previously asked online what was suggested about the amount of ml I should give my son as far as the garlic was concerned and was told not to give it as it lowers his meds. All the research I have done said garlic affects meds like Invirase, but never read that the meds he is on have any negative effects if garlic is taken. Can you please advise me of anything you recommend regarding this and also of anything you know regarding Niacin? Is Niacin also safe to take and if so, how much should I give my son who is 12 years old and weighs 88 pounds? How many ml of garlic supplements may I give him if it is possible for him to take it? What else would you suggest I can do to help him lower his cholesterol/triglycerides? Can I also give natural garlic in lets say food and if so, is there a limit? Thank you so very much as always for your time and attention you give to others like me. No matter what we go through regarding this illness, it is a wonderful feeling to have you standing right there next to us. I wish you a wonderful day and please send our love to your family and a special hug and kiss from me to you and your three "nephews" too. :) Love, Mommy of Three

Response from Dr. Frascino

Hey Mommy of Three, You pose a number of questions that would require considerable discussion to address completely. This type of very specific discussion is best when it's between you and your son's HIV specialist, as there needs to be a give and take of information, rather than just the general type of comments I can provide in this type of forum. But I'll certainly try to provide you with some direction nonetheless. The drop in your son's cholesterol from 220 to 187 with the dietary interventions, Omega 3/fish oil and exercise is great! Congratulations! Keep it up! Triglycerides in the 300s are not excessively worrisome, especially considering his age and presumed lack of cardiac risk factors. I tend to worry much more about cholesterol than triglycerides in these kinds of situations. There are prescription-strength medications that can be used to lower both cholesterol and triglycerides (Lipitor, for example) or just triglycerides (Lopid), but I don't feel either of these is warranted yet for your son. (They may even be contraindicated, depending on other medical factors or test abnormalities, etc.) Niacin can be used to treat dyslipidemias (abnormal levels of fats in the blood); however, it can cause side effects ranging form skin flushing to early signs of diabetes. The extended-release formulation may have fewer side effects. At this point, once again, I do not feel adding niacin to your son's regimen is worth the risk. Garlic has been shown to decrease levels of protease inhibitors when used in significant doses. This is generally not a problem for the amount of garlic used in cooking. At this point, I would not recommend any specific intervention other than diet, exercise and Omega 3/fish oil supplements for your son. If available, you could ask his HIV doctor for a referral to an HIV-knowledgeable nutritionist who could help fine tune his nutrition while reviewing healthy low-fat dietary options for him. Ultimately, other more significant interventions may become warranted. They would include either treating the elevated blood lipids or switching off his protease inhibitor. For now, those interventions are not necessary. I understand your fears, but they are unwarranted. I would continue to follow his fasting blood lipids every three to four months while maximizing the interventions mentioned above (diet, exercise, Omega 3, fish oil, etc.) and watch for trends. An 88-pound 12-year old with triglycerides in the 300s is not a cause for alarm, OK? Thanks for asking about my family. Mother is fine; my brother, not-so-fine, but still alive and, as we frequently say to each other, "every day above ground is a good day." Happy Holidays to you and my "nephews." Dr. Bob

Hello again from Mommy of three Sep 10, 2006

Hello again dear friend! This is Mommy of three and as always, extremely grateful for all of your wonderful works for people like us. You give us hope and on so many occasions cause for tummy aching laughter. I have a question that I pray you can help me with as I have searched for answers to this question and was disappointed with short curt replies. What do you recommend for someone who is on Kaletra, Zerit and Ziagen and although received the wonderful news of being undetectable once again and with great T-cells, has a high level of Cholesterol and Triglycerides? I am giving Omega 3 fish oil, have tried to lower the amount of fats in the diet as well as exercise, but because it is my 12 year old child, I am terrified of a heart attack or worse and I keep wondering if I am making the right decisions. The HIV specialist says that he is in no rush to change the PI med because he wants to leave other options open just in case, but what if it is too late? I have such issues dealing with this disease for the past 12 years not only for my child but for myself and the guilt I carry (although his deceased dad infected us both) but I should have known better. Now look what I have done. I am meticulous about his care Dr. Bob as well as that of his 2 brothers who are not infected, but I am terrified that although we finally get the HIV under control, the pay will be the heart. Reyataz was used before and had to be changed because of the yellowing of the eyes and skin so that is not an option although I was so excited when we first tried it because it didn't cause high levels of fat in the body. Please... What else can I do? I do not want to end this question without also asking for your brother who was extremely ill and how he is doing? As I have mentioned before, I am here for you too, although I know you seem to have such wonderful support. I care about you and what you go through as well. I wish I had money to send to your cause, but a family of 5 living with a Social Security income... Well... It is impossible, but it doesn't diminish the desire to be able to. Sending all of our love to someone so near and dear and wishing you a wonderful weekend.

Response from Dr. Frascino

Hey there Mommy of Three, Welcome back to the forum! First a couple of basic comments: 1. Excellent news that your 12-year-old's CD4 count is "great" and plasma viral load has remained undetectable!!! Congratulations! Maintaining immune integrity and function (high CD4 counts) and suppressing viral replication and activity (undetectable plasma viral load) are the two main goals of HAART (Highly Active Anti-Retroviral Therapy). 2. The risk of cardiac problems is related to the level and type of fats in the blood (good vs. bad cholesterol and triglycerides). Chances are the risk levels are much lower than what you might be fearing. Your pediatric HIV specialist, after examining your child's blood lipid profiles, should be able to explain what level of risk is present. Discuss this with him or her. Next, what can be done about elevated cholesterol and triglycerides in adolescents who are taking HAART? There are three basic interventions: 1. Try to decrease blood lipids with dietary modification. 2. Treat the hyperlipidemia (increased cholesterol and triglycerides) with medications. 3. Change the antiretroviral mediations that are causing the problem. Of the three interventions, there is no doubt #1 should be stressed and given the greatest emphasis, because we would rather not add additional medications, all of which have their own side effects, to anyone's regimen unless absolutely necessary. And since your youngster is doing so well immunologically (high CD4) and virologically (low viral load), we'd rather not switch antiretrovirals, as there are only a limited number of options. So my advice would be to learn a bit more about which blood lipids are elevated and how that translates into potential cardiac risk by discussing this with your HIV specialist. Then maximize dietary modifications to see if this helps. I agree exercise and fish oil can be helpful. I'll post a link to one of the many Web sites that discuss treatment of hyperlipidemia in adolescents below. (I chose this one because I went to medical school in Cincinnati and their pediatrics program is well respected.) If your adolescent's blood lipids remain significantly elevated, you'll have to proceed on to option #2 (drug treatment) or #3 (change in antiretrovirals). Thanks for asking about my brother, Pete. He was given a prognosis of four months when his lung and brain cancer was initially diagnosed. That was October 2004. He's miraculously still alive and continues to face his challenges with remarkable courage and fortitude. Our motto has become: "every day above ground is a good day." I'll be seeing him again early next month in Boston. I continue to wish the best for you and your family peace, health, harmony and happiness. Keep your spirit strong and vibrant. I remain convinced the human spirit is ultimately stronger than anything that can happen to it, including HIV or cancer. Be well. Dr. Bob

Do I have to disclose? Feb 1, 2006

Greetings, I first want to take a moment to wish your brother and mother strength and hope in dealing with their cancer as well as strength for you to continue offering them the support and love they need during such a heartbreaking, extremely difficult time. I know all to well what it is like not only to have cancer, but to have loved ones with various forms of it,having lost some to death, but victoriously helping others in their battle and win away from its grasp. This is mommy of three sending you my heartfelt love, thoughts and support, as you, kind friend, have always offered it to us in a world that in its majority shuns positive people. My question is: Although it is always recommended that a person disclose to his physician and/or dentist his status, if one so chooses, do we have a right under the law not to? I was discriminated against by a dentist, and although I know that that in and of itself is against the law, I have not had so much as a cleaning because I am literally terrified of the embarrassment and humiliation once again. Do I have a right not to disclose or are we forced to disclose even when we do not want to? Are we obligated by law? In their questionaire can we answer no even when it is yes in order to protect our right to privacy? I cannot tell you how this, that may seem like a simple thing, would ease at least one of my overwhelming concerns and fears. I want to thank you for taking a stand on behalf of all of us who suffer from this disease. Your unselfishness and courage is an example to all. You not only educate us by opening up such a personal part of your life, but teach us that we should never lose hope... We can continue living... Just keep believing and anything is possible. We live in a world where it is so easy to look the other way and maybe it will all go away. You too have a difficult life and yet you are out there educating and helping others. People like us desperately need not only the financial support, but the physical and emotional help as well and yet although there seems to be so much money to go to war and furnish the lavish lifestyles of the rich, cuts are continuously being made to programs that help people that are desperate to continue living as normal and productive a life as possible. Although I wish I had the funds to help wonderful programs like yours, I do find other useful ways to contribute to such worthy causes. We can all contribute in some way. Thank you for your time in reading this email. I cannot tell you what it means to have someone standing by me, that can understand what I go through, and can help me to go on. I too am here for you. Anxiously awaiting your reply, Mommy of three

Response from Dr. Frascino

Hello, Thanks for your kind words, good wishes and support! Being "literally terrified of the embarrassment and humiliation" related to HIV discrimination to the point you are neglecting your health care ("have not had so much as a cleaning") is indeed a sad and unsatisfactory situation. The reason to disclose HIV status or any medical condition to your health care provider is to allow them to better care for you and certainly not to engender their judgmental and sometimes illegal discriminatory behavior. Knowing that someone has HIV or diabetes or penicillin allergy or whatever may be critical to how another medical condition is diagnosed, or medical test is interpreted or even whether a specific treatment should be prescribed. I'm not as worried about your "right to privacy" as I am about your right to optimal health care. Certainly you have a legal right to both! Optimally I would suggest you find a health care team (physician, dentist, pharmacist, etc.) that are HIV sensitive and knowledgeable. There are a variety of Web sites that can help you locate these health care providers. Once you have one you trust for instance an HIV specialist he or she should be able to give you recommendations for other sensitive and knowledgeable providers (dentist, ob/Gyn, counselors, etc.). Try the American Academy of HIV Medicine Web site (www.aahivm.org) or the GLMA (Gay Lesbian Medical Association) Web site. Both have a find-a-provider function that should help. If for whatever reason this doesn't work out for you and you wind up in a generic dentist's office facing one of those questionnaires asking if you have AIDS, I would recommend you merely leave that question blank. If the dentist or hygienist asks about the blank, merely say, "I would assume you take all the necessary precautions mandated by the universal precautions guidelines whether a patient is or isn't or perhaps doesn't know his HIV status, right? So let's proceed with the cleaning or whatever." Living with HIV is hard enough. There is no need to put up with other people's ignorance and certainly no reason to allow discrimination to negatively impact your health. Isn't it time we turned the tables on the bigots? I have a friend who made such a ruckus in the waiting room of a dental office when his chart was flagged with a large "AIDS" sticker and he, as well as the rest of the folks in the waiting room, heard the staff discussing the need to be extra careful when rooming him for a routine dental cleaning. He went ballistic, and by the end of his diatribe, everyone in the waiting room left without being seen. He also alerted the local AIDS service networks, the American Dental Association and AIDS legal service. You wouldn't believe how apologetic that dentist has become. Mommy of Three, I do hope you are broadening your support network locally. There is strength and comfort in numbers. Don't try to go through this alone. Bring a loudmouth HIV-positive friend with you if you're shy about speaking out for yourself in these types of situations. If I lived near you, I would love the opportunity to enlighten the institutions and professionals who have caused your fears. Good luck. Remember I'm with you all the way. Now go get those teeth cleaned! Dr. Bob

Can you believe this? Oct 25, 2005

Thank you as always for your kind words, but from my heart, I MEAN IT! You are family to me and I am so grateful to have someone like you on the side of so many affected with this dreadful disease. Family always stick together, through the bad and the good. I am here for you. How is your brother doing? I hope you take alot of pictures so you have the wonderful memories to look back on. He must be very proud of you as I am sure you are of him. I have had the colposcopy done. I am awaiting the results. Thank you for giving me the strength to go through with it. I felt your presence with me and am very grateful for it and your encouragement. I pray you feel my presence with you and your family in your painful situation and may you gather the strength from it to continue to do the outstanding things you do for yourself, your family and the little people like me. Please take care. I think of you always. Sending you all my love, hugs and kisses. Mommy of three Hello dear friend. As always, this mommy of three has you in her heart and on her mind. I just received an email from POZ and a deeply upsetting article came up. I have pasted it so you can read it and please tell me if you think we are all at risk of this and if there is anything you can suggest we can do to stop it. Can you believe it? And then they wonder why people do not want to get tested. Isn't there a law that can protect us? What about confidentiality laws?It is not enough that we have to cope with discrimination from people who are petrified of us when we have to disclose, but imagine what this will do to the rest of us, who want the option of not disclosing. Is it legal? I am having such a difficult time coping with my diagnosis and my sons, not to mention my positive pap test and awaiting my colposcopy results and am already starting to worry about where on this earth can we hide, so they cannot invade our privacy in fear of our very lives. Anxiously awaiting your reply but more than that, sending you lots of love, hugs and kisses as well as your brother and Dr. Steve. Love, Mommy of three || Health News || October 20, 2005 Illinois will begin names-based HIV reporting in 2006 Eric Whitaker, director of the Illinois Department of Public Health, on Tuesday announced that Illinois will begin in January tracking cases of HIV by name rather than alphanumeric code in response to mounting federal pressure to bring its HIV surveillance system in line with those operating in most other states, the AIDS Foundation of Chicago reports. "The federal government has made the decision rather simple: Switch to name-based reporting or lose millions of dollars for essential HIV care, prevention, and housing programs," said Mark Ishaug, AFC executive director. "IDPH is facing this new challenge responsibly by bringing together stakeholders to ensure that every effort is made to protect client confidentiality and promote acceptance of HIV testing and care services." AFC will serve on a task force convened by IDPH to review internal systems and assist the state in developing and communicating how HIV surveillance will operate in the future. The Centers for Disease Control and Prevention is pressuring all states to adopt names-based HIV reporting, which it considers a more accurate and consistent collection method than codes-based systems. The CDC has refused to integrate data from 13 states using codes-based reporting into its national HIV projections. At least 10 of the 13 regions without names-based reporting, including the states of California, Massachusetts, and Washington and the city of Philadelphia, are in the process of switching to names-based reporting systems. (Advocate.com)

Response from Dr. Frascino

Hi Mommy of Three, I combined your two posts into one. Thank you for your kind words and support. They are warmly appreciated. As the song says, "People who need people. . . ." Regarding names-based HIV reporting, it is a battle that many of us have been fighting for over two decades. California is one of only seven states and the District of Columbia that use coded reporting for HIV cases. The federal government (CDC) has been pushing for names-based recording for many years. We, on the other hand, have encouraged a code-based system to protect privacy, prevent discrimination and encourage HIV testing. The code-based system used here, like those used elsewhere, has been somewhat cumbersome and expensive. Some cases are lost because laboratori



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