IABF%SNYCENVM.BITNET@oac.ucla.edu (Amy Francis) (08/31/90)
My friend is HIV+. He recently went to Atlanta and became a patient of Dr. Alonso so he could receive the hyperthermia (this was a week before the death of the patient in Mexico). He was told that since he didn't have KS he would have to fly to Mexico and get it done there, that he could have the procedure within a matter of months and that the cost would be $50,000. He has recently tried to get in touch with Dr. Alonso to see if he could still get the treatment. Dr. Alonso's receptionist is giving him the old "I have NO record of your appointment, I do not recognize your name, as far as we're concerned you never saw Dr. Alonso..." etc... Obviously, Alonso is covering his ass and suffice it to say that my friend can't get the treatment (something he had alot of faith in). I realize this is a long one, but please bear with me. Two weeks ago my friend went to his appointment at Albany Medical Center in Albany NY. His doctor is not very aids/hiv informed in my opinion. Anyway, he told his doctor that he is going off AZT. He is able to tolerate it but he doesn't believe it is doing him any good anymore. My friend has been HIV+ for five years and was infected, he believes, six months prior to that. I'm not sure what his doctor's reaction was to him going off the AZT but his doctor DID say something very unusual, he told my friend that he and his collegues were quite amazed that my friend was doing so well. The doctor then went on to say, "...Dean (not his real name) you shouldn't BE here..." and that he and his collegues had been discussing his case and don't know why he is doing as well as he is. This is what I know of Dean's condition: HIV+, gets thrush periodically, has bouts with diahreah (sp?), has recently complained of some weakness in his legs, is very thin (but he's been VERY THIN all of his life). In the 5.5 years Dean has been positive he has never had a cold, christ, he's a smoker and I've never even heard him cough. When his T-cell count went below 200 (some time ago) he asked that his doctor not reveal his T-cell count to him (he says it's like some kind of moribund count down) his doctor just says doing good or not so good. He has been doing pentamadine for at least nine months. So, last week he went to see a doctor in Miami about alternative forms of treatment. He asked about interferon (which Albany Med doesn't even discuss nor do they discuss ddi or ddc or any of the other cutting edge recently approved drugs, Dean had to beg them for AZT a year and a half ago) anyway he asked about interferon and some other procedures. He told Dr. Miami (for lack of a better name) that he had decided to go off AZT. Dr. Miami told him that he thought that was best because (I guess) it causes cancer and isn't very good for long term use. Dr. Miami also told him about another treatment: Ozone. Apparently, they take a quart/pint? of blood out of the body, infuse and oxygenate it with ozone (which kills HIV) and pump it back into the body. He is not allowed to do entire transfusions yet (ie: pump all the blood out ozone it and pump it back in) but I guess he can do this other procedure. I can't remember what other things they are going to do, but this was the procedure that most excited my friend. Okay, so here are the questions: 1. has anybody out there heard about ozone? If it's in the archives, please let me know which one. 2. Do any of you know of Doctors in and around upstate (not westchester, mid state (albany) and beyond) that deal with the more experimental or alternative forms of treatment. If not, the closest? 3. If my friend's health is such a damned wonder to these Albany Med. doctors then why haven't they asked to do tests on his blood and compare it to other HIV's that are deteriorating more rapidly to find out if there's something there inhibiting the progression of the virus? Are they to be believed? 4. What do you think of what I've relayed here, and do you have any questions for my friend? 5. I am somewhat into Metaphysics (bear with me you real-world Doctor types) has anyone out there has any success with metaphysical treatments? Affirmations? Exercises? etc... The reason I am interested in this last question is this: (a plausible scenario) Two cancer patients, both have the same type of cancer, in the same stage, relatively the same environmental factors, one dies the other doesn't. Why? Could it be that mindstate has much more to do with recovery and illness than anyone wants to admit. Lets face it, changing one's mindset is much more difficult than taking a pill or heating your blood. Also, I read (I think in one of the health bulletins from this listserver) that in a double blind experiment with a group of ill (terminally?) patients that half of those patient's names were given to people (churches?) so that those people could pray for that half of the patients. The half that was prayed for did markedly better than the non-prayed for half. Maybe part of the reason my friend is doing so well is that he is very hopeful, he realizes that if stress can give you cancer (or make you more susceptable to disease) that the mind plays a very important role in keeping you healthy. And he, unlike alot of pwa's or HIV+ people or even healthy gay people, has alot of support. His parents found out he was gay and HIV+ at the same time and stood by him, making it their main objective to do whatever they had to to help him, and he's got a few very close friends (most of which happen to be heterosexuals <ie: people who might normally turn their back just knowing he was gay> who have stood by him and encourage him and help him get his head back on track when he DOES get down. And alot of pwa's/HIV+'s/gays don't have the emotional support that Dean does. They are outcasts abandoned by their gay peers as well as their heterosexual friends and family. Maybe love has more to do with it than anyone knows. Well, I've babbled on and on enough. Any thoughts, comments, critisisms, and mostly helpful advice on how I can help to keep my friend, my BEST friend, healthy until he finds the treatment that will rid him of this virus (which I KNOW he will, it's just a matter of time). Whatelse can I do? One last thing: if you are HIV+ or you have AIDS -- please be hopeful even though it looks hopeless! And whatever you do DON'T DIE FROM THE DIAGNOSIS.