I Was Reading A Book On the Immune System
May 20, 2008
Dear Dear Dr. Moyle:
I have used the "Ask the Experts" many times when I was first diagnosed and went onto treatment during the loopy loop years of 1999-2005.
During those years information was scattered online, and the choice of meds for the med naive patient became a chess game.
Waiting for FDA approval on Tenofovir, I got into the early release phase, (dropping 3tC/Epivir) and reached "undetectable" for the first time in 3 years
of my Sustiva+2 nuke regiment. What finally worked for me...is as my Doctor agrees is 'the Gold Standard' in 2008. Your site helped.
When I was first on AZT, after first line of meds in 1999-I became anemic. My doc gave me some procrit and a work letter to stay home and rest. I pursued a
"2nd opinion" from your Experts, running my hemoglobin numbers by them-
and the answer was fascinating. "Mike you need to get a blood transfusion, right away-get off the AZT. Procrit isn't enough."
I printed the answer, took it to my Doc, and got permission to go to the Hospital
Emergency and get an immediate blood transfusion. The ER Docs, agreed with
the Expert at the Body-110%. After the transfusion, and dumping the AZT, my hemoglobin went 5.2 to over 8 and then the Procrit helped get it back very quickly up to the normal numbers of 13 and 14!
My relationship with my doc was good, and since he too was into Reseach at UCLA I used to rub it in abit, and how much I liked Cal Cohen, MD-who was then one of the "experts".
One day, my doc replied, well Cal Cohen doesn't see any patients, he is fully into Research! I guess I 'hit a nerve' but that doesn't matter, because my AHF doc is one of the very best in the West Coast AHF System. What is funny is that, my doc Dr. Khanlou is now fully in conferences and Research and letting go of all his patients at the AHF Valley Clinic. I got canceled 4 times after waiting 45-60 days for an appointment. That's all most a year without a doctor!!!!
Reading the writing on the wall, I switched to a more accessible HIV doc at my Valley (Sherman Oaks) AHF Clinic-who can get the job done-and my labs are overall "pretty darn good". Thanks to the choosing of the "Gold Standard" of HIV antiviral's back in 2001-2005 which I am still on, as of this date in 2008. I will miss Dr. K, but I suppose "HIV Research" needs all the minds it can muster-with volume patient care experience.
Having said all that, I recently submitted a query to a panel physician on something I came across. I don't think I missed the response, because "there was no response!!"
So I more or less copied the same question and sent it to another panel physician on Ask The Experts. I cannot remember their names. But there was no Reply!
I thought there would be an email auto reply if the question was addressed-but in the case there was no flag-I check ALL the Postings for ALL the experts and-No record, No Reply. Grrrrrrrrrrr.
The question was kind of went like this:
I was reading a book on the Immune System (2006) and the author made a statement like-"while new medications can help control AIDS, eventually the virus will defeat the drugs and lead to death."
Quite sobering. Is this what are friendly Docs are NOT telling us? (And who would want to?!)
Yes, I know it can't be eradicated and hope springs eternal but is the above quote true?????
(I am not one to panic)
Mike
It was submitted around the beginning of April '08 (twice) but I don't have the exact date. Just no response.
I am not being "fatalistic" just pragmatic while cautiously optimistic.
Around the same time, that I didn't get a response, the new Ask The Expert panel opened up, "Growing Older with HIV" or "Aging with HIV".
Did I TRIGGER Something????
Your interview with Dr. Steven Deeks in Winter of 2008 (Below)-seemed abit more pragmatic yet not fatalistic on what I was asking...
Hope Springs eternal, but disinformation is a drag...
------subquote----
One question that often comes up is whether you're optimistic about the possibility of getting beyond antiretroviral therapy at some point; whether the body might be able to be persuaded to do a better job of controlling HIV.
I'm actually very optimistic but -- I gotta tell ya -- I'm a bit dubious about whether we're going to come up with an immune-based therapeutic that prevents disease progression such that people never need antiretroviral therapy. But I think we can delay it, and we can probably improve the immune system in people on therapy.
But I actually think that immunopathogenesis-oriented work and immune-based therapeutics will lead to a cure, and actually, we're really focused on these elite controllers as a potential first step in that direction.
You know, maybe I'm naive -- I don't understand the viral latency stuff as well as I probably should -- but I'm somewhat optimistic that a cure might be feasible; and I'm happy that people are now willing to at least talk about it again.
---End of subquote---
Please forward a copy of the EMAIL to Dr. Cal Cohen-he was indeed a great resource during the 'rough years'. Thank him for me as well.
Please try and launch an answer to my above query, I will try a third and final time-
this time on the new "Aging and HIV". Wish me luck-
Feel free to use any part of this email for any story you wish...or just trash it.
A good title would be: "Am I too fatalistic for The Body?" or "Just Give Me the Real Deal."
Michael Sherrer (delete name if used on public site to MS)
MikePulse@aol.com or MichaelSherrer@aol.com
Sherman Oaks, California
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