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SteelyDanny
February 25th, 2010, 09:34 PM
I will try to keep this as concise as possible...

Been following this forum (in its multiple modes) and posting here and there over the years. After being labeled "HIV Positive" about 11 years ago, it hasn't been until recently that I've experienced any adverse health. I didn't know what was wrong with me, just that I was getting weaker by the day.

Started in October 09- went to a sporting event in Kansas City, requiring me to be outdoors a lot in record cold weather for that time of year (less than 40 degrees) and felt crappy for the remainder of the trip. Appetite also waning. Had gone camping twice prior within a few months timespan (in slightly better weather), the second time I felt a little weak, but nothing I could really identify, having never experience ill health in my life (just turned 43).

I had been seeing a naturopathic doctor for almost two years, after quiting my HIV doctor who tried to scare me onto ARVs (or at least bactrim) a few years back when my CD4 count was about 180. With the naturopath, adopted a diet that I had grown accustomed to for about a year and a half of chicken and fish (avoiding red meat and pork for the most part), organic vegetables as much as I could afford, also avoiding wheat and cow dairy and growing to like the goat dairy products I was using (cheeses, yogurt). Taking supplements to help with food absorbtion (which showed in my bloodwork), etc.

Mid to late October 09, got my scheduled naturopath appointment moved up because the weakness was increasing. Stayed home from school and work for a few weeks, but got so weak and couch-ridden I couldn't stand up to heat meals in the microwave. Everything became a task, in which I would have to plan my every move to reserve energy. My mother, living in another state, finally came to visit when I admitted I was sick, and she had me admitted to the ER the eve of her arrival to check on me (I was wheeled out of my apartment by paramedics, I was that weak).

Was in the hospital for 11 days total, off work on short term disability for 10 weeks. Never told them my "status," but they ran all kinds of tests and asked all kinds of questions. When I was moved from IC (because there were no regular hospital rooms available for a few days), I finally admitted to the doctor that I had "tested positive" years back. But they pretty much had already diagnosed me with PCP (CD4 count now about 30 or 40), and that's how my mother finally found out I had "AIDS", my HIV status I'd been keeping from her for more than 10 years- actually, a "burden" lifted.

Was sent home to finish recovering when I could take medication orally, but as far as I know, I wasn't on any ARVs while hospitalized. Just strong antibiotics, oxygen and something for my heart (had really high heart rate they were trying to bring down). I seemed to tolerate what they gave me overall and slowly bounced back.

My first appointment with my new infectuous desease doctor, he wanted me to start Atripla (but he at least waited until I got over the PCP). I've been taking that since December 09, along with other antibiotics.

I'm concerned about how to transition back to my naturopath or at least how to incorporate that into my regimen. I've been struggling with quitting antibiotics/Atripla cold-turkey, but feeling a bit apprehensive. I feel that if I hadn't gone to the ER, I would have died in my apartment. I understand that the medicines I was given helped clear up whatever was wrong (even before I started Atripla), but still having to continue the antibiotics has me worried, as well as the long term affects of ARVs. Oh, forgot to mention what they diagnosed as herpes soars around the anal area that have healed, so that's at least one reason they want me to continue the antibiotics.

I don't think I'll be giving up red meat and pork anytime soon, just monitoring my intake. Had a little anemia going on during all the previous. I do drink (wine mostly) several times a week. Don't smoke (weed, VERY rarely, a few times a yearish), was fairly active (especially in 09), but trying to be more moderate now.

Hope this is enough to at least get a discussion started. Feel free to ask me any questions. I can't wait to see House of Numbers when it comes out on DVD!

Brian Carter
February 26th, 2010, 04:53 AM
http://i50.tinypic.com/2vj69mr.jpg

Glad to have you back Steely! I remember you from whence I first came on board, which now seems like eons ago....

So whats this?

Was it ever explained to you what you had that made you so week? My concern for you is not the Atripla, per say, but antibiotics for that amount of time? Two months? I can't imagine what that is doing to your system. What antibiotic by the way?

jonathan barnett
February 26th, 2010, 05:39 AM
Are you from the Kansas City area, SteelyDanny? If so, feel free to private message me if you'd like to chat or meet.




Started in October 09- went to a sporting event in Kansas City,

SteelyDanny
February 26th, 2010, 11:54 PM
Hi Brian and All,

(I laughed when I saw that song, now I can't get it out of my head)

I go to the doctor this Tuesday, so I have a few questions for him- not to alienate him or be disrespectful, but we'll see how he reacts.

As far as antibiotics, I was taking Bactrim, but got switched to Dapsone. Also, Azithromycin, Fluconazole, and I may be missing one - don't have my paperwork with me.

I want to ask the doctor what can be reduced/eliminated, but on his end, its going to depend on what my CD4 count is. Not my choice, you understand.

Also, I'm not in the Kansas City area, sorry. I'm kinda leary of meeting fellow dissidents face to face... the last one-on-one email exchange I had, they were telling me how I should just come out of the closet already to my mother about my "status"- if it ended in "divorce," so be it. But that's not how I operate. So, I will be taking the dissident networking thing a little slow as well.

moonchild493
February 28th, 2010, 12:50 PM
Hi Danny,

Sorry to here of your problems. The one thing I'm curious about is your symptoms that led you to be diagnosed with PCP. You don't seem to mention any lung issues, just extreme fatigue. Did you have trouble breathing also? Do you attribute the weakness to lack of oxygen?

My first big illness began in a similar way. I first got sick after attending a crowded show at an art museum. Must have been a bunch of germs floating around in late January. Got sicker and sicker and less able to breathe for months, all the while looking for help from a naturopath and integrative doctors and such. The coughing was terrible. No one had a clue and they kept giving me things like inhalers as if I had asthma. It wasn't till late May, when I could no longer even pretend to go to work at my restaurant and couldn't drag myself up the stairs that I finally asked a friend to take me to the emergency room, where they got me on oxygen immediately.

I've told the rest of the story many times, and it's available over on Liam Scheff's blog if you want details, but I ended up diagnosed with AIDS after an HIV test "just to rule it out". I guess I can't fault any of the previous doctors for not going there since middle-aged white women aren't exactly considered a risk group. At the time, I was not at all aware of the dissidents perspective, and I underwent all the usual treatments in the hospital -- Bactrim, prednisone, fluconazole (I had developed thrush toward the end). I was there about a week and was extremely weak when I went home, especially my thigh muscles, which screamed every time I tried to stand from a sitting position. It took a long time to recover my strength, and I had lost quite a bit of weight (not necessarily a bad thing in my case, but it's not muscle you want to lose).

They made me an appointment with ID for about 3 weeks after I got out of the hospital. That's when I got "offered" participation in a clinical trial, which I accepted. Turns out I was on Trizivir and Sustiva. I did extremely well and my numbers behaved exactly as they should.

In 2005, at about the time I was wondering if I really needed all these drugs since I was doing so well, I happened upon virusmyth and, after a great deal of reading things that made a lot of sense, quit the drugs cold turkey. It did not go well, and 2 1/2 years later, with extreme fatigue, weird digestive issues, very strange labs (including elevated liver enzymes, which never happened on the drugs) and a cough that nothing would help, I ended up, in desperation, back in the ID department. I had lost almost 70 pounds. Was put on Atripla, while mostly ignoring Bactrim, etc. (I did not actually have pneumonia), and started recovering immediately. I made an unsuccessful attempt to get off the drugs last June but chickened out after a strange bout of diarrhea which was later diagnosed as salmonella. I'm doing well now, living a normal life but feeling my stamina is not where it should be. I don't know if it's effects from being sick or possibly from having been on the drugs in the first place. My CD4 count (for what it's worth) is having a harder time rebounding this time around, hovering around 300 for quite some time now, but I feel well.

Sorry for going on, but I guess my point is to be careful of quitting Atripla cold turkey if that's what you're going to do. Also, I would make sure your immune system seems to be fully recovered before doing it. I know there are many who have got off the drugs and done well. I don't know how many of them were those who were very ill before being put on the drugs. I don't know why some have bad side effects (I didn't) and some don't, or what the action of the "medication" is that seems to make it work so well for some. I will probably take another stab at getting off Atripla in the future, but I don't know how soon.

So keep us informed about what and how you do. I think the more input we have, the more we can learn from each other. And best of luck to you!

Linda

SteelyDanny
March 1st, 2010, 11:40 PM
Thanks, Linda!

I have to say that I was not experiencing a hard time breathing really until I couldn't get off the couch (but once I sat back down, say after answering the door, I experienced a sort of panting, but would get my breath back by the time the visitor had caught the elevator up to my fifth floor apt.), and I definitely did not have a cough. That's why I had no idea that it was pneumonia, or what it might feel like to have it. Just the gradual weakening until I was hospitalized. Lost appetite first (probably from the thrush), experienced increased weakness and weight loss (from 145lbs to 110), then the hospital.

At the hospital, I was having oxygen issues, and they didn't take me off those eleven days until I had a 90% saturation (I think that's how you express it).

2009 did seem like the year I was trying to do it all: freelancing, full time day job, softball from summer through fall, school, camping... just plain living! I'm a pretty high strung person that tends to avoid caffeine, to give you a clue. So if anything, this was a wakeup call to slow down and be more selective about my activities. Learning to say NO. Say it with me...

Brian Carter
March 2nd, 2010, 05:20 AM
Holy Batman Steely! Your dance card seems to be really full with those antibiotics. I've refrained from looking them up one by one, for fear I'd become nauseated.

Have you thought about taking a step outside western medicine, now that you've recovered for the most part, so that the detrimental effects of the long term antibiotics use can be effectively managed? What I can only think is that you may have severely upset your intestinal flora, which could result in much more unwanted events to come.

More on Antibiotic Damage (http://www.google.com/webhp?client=firefox-a&rls=org.mozilla:en-US:official&channel=s&hl=en&source=hp&btnG=Google+Search#client=firefox-a&channel=s&rls=org.mozilla%3Aen-US%3Aofficial&hl=en&source=hp&q=antibiotic+damage&aq=3&aqi=g6g-m2&aql=&oq=antibiotic+da&fp=c26c79a56c95bda8)

SteelyDanny
March 2nd, 2010, 08:38 PM
Hi Brian,

The one I was missing was Acyclovir. I reminded the doctor today about my earlier reservations about starting "the drugs", so I wanted to know which/when any can be eliminated. My labs from January are showing normal organ function, but I've got a little anemia going on. As I guessed, he's targeting to get my CD4 count above 200 (has gone from 3 to 60 so far), and one of them (I think the Fluconazole, the antifungal I take 3 times a week) I can stop when they reach 100. The Atripla, of course, will remain, so I'd have to consider "ditching" this doctor when I feel I want to stop them as well. From what I'm gathering, even then I wouldn't quit cold turkey, but gradually.

Don't forget, I was seeing a naturopath for almost 2 years (after quitting the first allopath who let me go about 8 years without forcing meds UNTIL I dropped to a 180 CD4 count). And I've only been taking all this stuff since NOV 09 because of "illness". The naturopath was detecting anemia and stuff from bloodwork, but couldn't figure out why I wasn't getting better overall from the recommended diet and supplements (was improving in some areas). In summary, I haven't shown signs of illness until my 11th year of being "poz." Not saying something isn't wrong, just not sure how to go about finding out what is. Mayo Clinic eventually? Who knows.

This new infectious allopath will probably not continue to see me if I don't stay on the Atripla, and the question is will the naturopath see me while I'm seeing the allopath. This is where I am. I am going to make an appointment with the naturopath in the future, but I would need a willingness to work with me until I feel comfortable "ditching" the allopath. This is where many people find themselves, straddling a fence. So noone else really can say what I should do. I have to take in all the information I can and finally decide what I'M willing to do, given the state of things.

I'm just glad that:

-the numbers don't really frighten me anymore, they are just a trade-off for dealing with allopaths.

-I am a relatively upbeat person, despite having HAD to deal with reducing the threat of HELLFIRE regarding religion and homosexuality, so in a way, this is VERY simular.

-I have a life. I don't even want to think of how a more "reclusive" type person would deal with stuff like this.

Brian Carter
March 3rd, 2010, 04:15 AM
You've had a long foray into all types of stuff as I and others can see and Jesus Jimminy Crickets, there's not any easy answers, are there?

Without sounding detrimental or negative in anyway, but you know what this is reminding me of?

Long ago and not far away, I was going to these HIV support groups. This one particular one had about 12 (newly diagnosed) individuals who would sit knights of the round table and give a round robin style little diatribe each week on how they were, how were they doing, yada yada yada.. Holy sweet cajones! What was said was enough to make one's head spin. I was on this drug, I was on that drug, the virus mutated, I had an ear infection, I'm depressed, my doctor said, this test said, by boyfriend left me and so on. Of course, I stopped going after 3 episodes, but things from time to time remind me of this and it's one of the reasons I became a dissident, but I digress.

The situation at hand nowadays seems like (and it's not only you Danny), that even in dissident circles, one cannot get away from this almost insidious insistence that whatever HIV is, one's on going health problems have to be explained in full detail leading to some way, somehow, some fashion, that HIV must be the very thing that's causing (or caused) that person to go down hill...

I remember our fellow friend Michael Geiger explaining that in order to deal effectively with health problems associated in and around the HIV disease mentality, that the only way to end, put a stop to it is to raise one's consciousness level above the level of all phenomena AIDS and HIV. OK; So if this seems plausible to anyone, think about this; Wouldn't it be wise to stop thinking and speaking like we do a lot of the times when it comes to one's own health problems?

What I'm pointing out (and gezz, I've said it before so many times) is that if you're going to keep referring to and using the language created to serve the grand debacle or "mind fuck" as some would call it, what you'll will get is more of the same, thus keeping you in the same predicament round robin. Change your focus, change the game in YOUR favor!

Danny's on to something though: Create a life. Your own life.


And remember this: Everything created about HIV and AIDS is (either intentionally or unintentionally) precisely designed to keep you in this constant state of forcing one to remain focused on only one thing: Them.

SteelyDanny
March 3rd, 2010, 07:55 PM
That is correct, Brian. Especially that support group stuff. I don't belong to any of that sort, preferring a more diverse network of friends, family and acquaintances. That's why I felt compelled to keep my "status" information to myself as much as possible, because I don't need an environment of people feeding me negativity.

I just want to make sure, though, that I am being clear in what I'm saying. I don't believe "HIV" is killing me or made me ill. I did get sick, though, and had to find a way to address it. When you are too weak to even move, all the positive thinking in the world isn't going to change that.

It is hard to get away from the "folklore" that the AIDS establishment has created. It seems the best you can do is understand that you don't agree with a lot of what they are saying, and be sure that you are translating it to yourself according to where you are in the "detox" continuum. For example, the doctor might say that you have x amount of CD4s, but you know in your mind that this is not necessarily a direct indication of ill health. I'm not going to waste my energy trying to argue with him over science when I can just do my own research to verify what he is saying. I tend to take a more surreptitious approach - get as much info as possible.

If you are physically feeling ill, then you may be on a quest to find a remedy. This may include not buying into the negative mental effects of the "orthodox language," but unless you are totally isolated from it all, you can't really not be affected by it in some way. It is a tightrope act, in my opinion.

Prior to getting sick, I had already spent years preparing myself to not fall into the AIDS zone, if I were to get sick.

G Man
March 3rd, 2010, 09:27 PM
Prior to getting sick, I had already spent years preparing myself to not fall into the AIDS zone, if I were to get sick.

That sure sounds familiar to me. I knew about Duesberg and others, and was well aware of the pitfalls of falling into the AIDS zone many many years before I even tested positive. I figured if the "unthinkable" ever happened, at least I'd be somewhat prepared. I don't know who he was, but thank god for that guy stationed in front of the HIV testing site who handed me those dissident flyers on the way out. That sparked me to do some digging into this about 10 years ago.

moonchild493
March 5th, 2010, 02:26 PM
Hey Danny,

I just want to encourage you with regard to the doctor situation. While I know that many here have horror stories regarding their treatment by ID docs and other allopaths when they go off the drugs. that has not been my experience. I have been treated with nothing but respect and even kindness. I also have dealt with homeopaths, acupuncturists and naturopaths who not only didn't mind my seeing conventional doctors but actually expected it, realizing that there are things with which they cannot always help.

The doctor who is currently doing my primary care is an MD who has a holistic family practice in which he mostly uses anthroposophic medicine, which ties in all kinds of mind/body stuff (he's particularly big on meditation) as well as remedies similar to homeopathy. But he'll be the first to tell you that if you have a life-threatening infection you need to get on antibiotics. In fact, he's the one who gave me a referral of sorts to the best ID doc at Duke, referring to him as "a god", and this is a much better fit for me than the doc I was seeing before. The man may be very orthodox, but his attitude is that the doctors work for us, and all they can do is suggest and then accept our choices while being supportive.

So don't despair of being able to coordinate a "team" that will work to restore and maintain your health. It's possible you may need to do a little searching, but it can be done. And anyone who refuses to help you if you go off the drugs is not worth your consideration.

Hope this helps,

Linda

Gos
March 29th, 2010, 09:25 AM
I have been treated with nothing but respect and even kindness. ......The man may be very orthodox, but his attitude is that the doctors work for us, and all they can do is suggest and then accept our choices while being supportive.

Linda,

PLEASE tell me your doc practices in the Houston area. I have nothing but horror stories about the doctors I've seen, and I really need to see a doctor who doesn't develop the one disease that I KNOW for a FACT that HIV causes: Physician myopia.

--- Gos
--- gos@nerosopeningact.com
--- http://myspace.com/nerosopeningact
"Nobody here but us heretics..."

moonchild493
April 1st, 2010, 02:55 AM
Gos,

Sorry, he's here in NC at Duke. I could ask if he knows anyone good in Houston when I see him in May. Surely in a city with such a large medical presence there must be someone!

Linda

jee
April 1st, 2010, 07:54 AM
SteelyDanny,

This is precisely the colossal tragedy of an hiv diagnosis. Everything about it is shrouded in mystery, yet, some of us (myself included) suffer illnesses which "appear" to be because of it.

From going to psychics, spiritual healers, ayurvedic doctor, homeopaths, naturopaths, there's a few stones I have left unturned but to no avail.

NOw, I have to start meds very soon but as my luck would have it, the liver enzymes have become elevated all of a sudden.

Brian and other may beat me up again for sounding too negative and not smiling in the face of this terrible illness but I'm trying to do the best I can

Brian Carter
April 1st, 2010, 03:23 PM
Jee,
Please, I'm not beating you up. I want you to get better. My opinion, based on what I know about you, is that you've not allowed any alternative solutions enough time to work. Read any of it and you'll find it takes longer than the traditional protocol, quick and masking effects of western medicine. Your not going to die tomorrow, so what have you done today that's going to help you?

Gos
April 1st, 2010, 07:28 PM
I am reminded of an old joke:

The difference between allopathy and naturopathy is that with naturopaths you'll die of your disease, and with allopaths you'll die from the cure.

--- Gos

SteelyDanny
April 1st, 2010, 07:57 PM
Jee,

Before I quit my first doctor, I used "elevated liver enzymes" as a way of staving off having to start the meds. Just before that visit, I participated in a "health screening" at work, and took the results with me. The elevated enzymes were measured at 40 (what measure of unit, I don't know), but the doctor told me that that wasn't high. I'd have to be in the thousands for it to be of any concern. Take whatever you need to gleen from that, but just thought I'd share that with you.

moonchild493
April 2nd, 2010, 03:20 PM
jee,

Just a quick note to tell you that when I was very ill after getting off the drugs the first time 2 1/2 years before, my liver enzymes had gotten very high. I thought this exceedingly strange that this happened a while after I got OFF the drugs. I used it as a reason not to get on the drugs, even though nothing else was working. Turned out that the enzymes dropped rather quickly once I started the Atripla. I don't understand it, and I can't guarantee the same would happen to you, but this was my experience. It's all very confusing.

I wish you the best,

Linda

Gos
April 3rd, 2010, 07:29 PM
Linda,

That is pretty strange.

My experience with meds (Viramune, Epivir, and Zerit) was exactly the opposite. After only a year of taking them my liver enzymes went through the roof so rapidly that my doctor took me off of meds altogether, fearing serious liver damage if I stayed on them.

Since going off meds, my liver enzymes have returned to normal.

--- Gos

moonchild493
April 4th, 2010, 04:21 PM
Gos,

I know how odd it is. I used my liver enzymes as an excuse for a long time to avoid the drugs. I had many other oddities in my bloodwork, including a ferritin level ten times the usual maximum. the other results, such as low WBC and platelets was more predictable. Perhaps the difference is I had something that actually benefited from the drugs, while you did not, as witnessed by what you found out about allergies and such. We really are all different, I guess. I will certainly keep an eye on my labs and address any problems that arise.

Linda

Gos
April 4th, 2010, 08:48 PM
Linda,

Yeah -- it's pretty obvious that the meds have SOME profound effect on the body.

Which, when you get right down to it, is the whole basis for pharmacology in the first place. The whole idea of using drugs to fight disease is one of having an arsenal of toxic chemicals at our disposal whose toxicity we can target towards whatever effect we want to have on certain biological functions. This goes all the way back to Paracelsus, the father of modern toxicology.

Given this fact, it seems kind of obvious in retrospect that there will be some people whose medical conditions may actually show some benefit from the drugs.

Does that mean that if I were in your shoes I'd make the same decision you have? No, I personally wouldn't, because I've already been down the path of taking toxic drugs (corticosteroids) which had some short term benefit for some condition I have, and for me the long term side effects simply weren't worth it.

But at the same time, does that mean that I'll look down on you or condemn your decision? Hell no. At the end of the day, it's your body, it's your life, and it's your health, and I'm not gonna be the one to suffer the consequences if you fail to take medicines that could improve or even save your life, or alternately if you take drugs that will make you sick.

Since I first stumbled across Virusmyth nearly 10 years ago, I've learned a very important lesson: No matter how much I think I know about anything, my ignorance will always outweigh my knowledge by a pretty substantial margin. I'm learning that the true mark of intelligence is not found in how smart you feel, but in how dumb you feel, because only the most intelligent people are even remotely capable of even the most dim comprehension of just how ignorant they truly are in the larger sense, while ignorant people (eg George W. Bush) go around thinking that they're geniuses, because they're just too stupid to comprehend the massive scale of their own profound ignorance.

Having said that, I really like the direction that QA has taken since the split from AME. In the old days, those of us who think we know everything (myself included, I'm ashamed to admit,) would likely have attacked Linda, accused her of being a Troofer mole, and probably ended up running her off, when there's so much that she and others like her can teach us.

Even the name "Questioning AIDS" is a lot more humble than "AIDS Myth Exposed". The former moniker implies that we have no knowledge per se -- only questions, and that we are willing to accept our own ignorance in order to learn more, while the latter implies that we already know everything and we're here to "expose" anyone who thinks they know something that we don't.

--- Gos

Tony Lance
April 6th, 2010, 12:12 AM
Gos,

You wrote:

"I really like the direction that QA has taken since the split from AME. In the old days, those of us who think we know everything (myself included, I'm ashamed to admit,) would likely have attacked Linda, accused her of being a Troofer mole, and probably ended up running her off, when there's so much that she and others like her can teach us."

I'm delighted to read such affirming notes as yours about the direction in which QA is going. That's what we're aiming for. And I'm even more happy to read what you wrote about Linda. We should pay close attention to the personal testimonies of dissidents like her (and there are many others) whose experiences don't go the way some of us might want them to. Put emotion and preconception aside and let these stories tell us what they will.

Gos
April 6th, 2010, 02:58 PM
Put emotion and preconception aside and let these stories tell us what they will.


EXACTLY!

I have nothing to add here, just thought that what Tony said bears repeating.

--- Gos

Robert C.
April 28th, 2010, 08:20 PM
@SteelyDanny: Just wondering how you're doing now? I realize this is my first posting here, but I saw some similarities in your symptoms (general weakness, high heart rate, anemia) as what I was going through about 6 1/2 years ago.

I too got diagnosed with PCP though I denied being hiv-positive to the docs. I took the drugs to treat that (turns out I was allergic to sulfa-based antibiotics, so I was eventually put on mepron, which worked). I had no cough and no shortness of breath unless I did something like walk upstairs -- though I did have a raging fever. In any case, that's what it was, and the mepron cured it.

About four months after that, though, I started feeling weak again, losing weight, almost fainted on the bus. I ended up being diagnosed with disseminated MAC. The MAC had spread to my bone marrow causing the anemia. Because my body was not producing enough blood, it caused the super rapid heart rate (sinus tachycardia -- mine got up to about 175 beats sitting!). I was hospitalized and discovered I had a t-cell count of about 15.

But, I'm here. I started the ARVs, got the proper treatment for the MAC (which, unfortunately, is 9 months of powerful antibiotics -- but they work), and -- knock on wood -- I've not been sick since.

I'm not saying you have MAC, but it's something I would ask your MD about. I was also having regular night sweats and fevers (along with the weight loss and general feeling of blah). Eventually, the fevers (and chills) got so extreme I could no longer function; it was painful and miserable. This is something I would not wish on anyone, so I thought I'd mention it as something to have checked out maybe.

I don't know if this posting will go through or not, but I figured I'd give it a shot. This is just my experience, and I thought I'd share it.

SteelyDanny
May 14th, 2010, 08:04 PM
@Robert and everyone...

Hi, still here. I got back to my normal weight. I'm back to my regular level of activity, though I do try to keep an eye on managing stress better. I'm still taking Atripla and the antibiotics I listed earlier... the acyclovir was reduced to twice a day and the prednisone stopped. The azythromicin (spelling on the fly, not time to look up if incorrect) won't be stopped by the doctor until my t-cell count reads over 100. I go to the infectious doctor about every 6 weeks, my t-cell count has risen to 70s last count (not that I put any stock in it). @Brian Carter, I've been drinking and enjoying kefir (regular as well as flavored- the regular reminds me of "skimmed buttermilk" to coin a phrase if it isn't already in existence). That has been one of my own prescriptions to counter any antibiotic damage. The naturopath (which I haven't gone back to see yet) would tell me to stay away from all cow dairy, but I've never been lactose intolerant. When I did abstain from cow dairy for almost two years, the result was that I found I liked goat milk products as well (especially cheeses, but not straight goat milk yet).

One thing I'm noticing is slight development in the pectal area- I think I feel a "core" on both sides, as if I'm a pre-pubescent girl getting ready for a training bra. I'm wonder if anyone else has experienced this side effect? Also @Robert, don't know how you were able to hide your HIV status from the doctors, because I let them do all the "testing" when I was admitted into the ER and they came back with that diagnosis, along with a t-cell count of 3.

Meanwhile, I've just been concerning myself with life in general and keep living. Being more selective in what activities I take on, not trying to overfill my dance card like in the past. Overall, enjoying life!

Just preordered my copy of House of Numbers (the Deluxe Set) and can't wait for that to ship in July.

Peace to all,

Steely

Brian Carter
May 15th, 2010, 02:04 PM
I had a young friend a while back who has been on meds for 4 something years, was always
complaining that his body changed after starting, Developing man breasts was his # one compliant.

jee
May 16th, 2010, 08:34 AM
SteelyDanny, good to get update on your status. It is indeed one of life's deepest mysteries that after what we know (or don't know about hiv) there are so many of us taking these toxic poisons and surprisingly finding that it's helping us (even if in the short run). The other option was sickness and disease that was more painful.

I also started the meds about a month ago after being a dissident for almost 8long years, but in truth, I could not find any valuable help that would improve my health. I learned a lot about supplements, about healthy diet and everything (more than I could even digest ) but the bottomline was that I continued to suffer for over 8 years.

Now, I cannot say if those years were wasted on dissidence or they were valuable years for me to learn what I did. Nor can I say if now I've chosen the right path by going on meds, because I am already noticing things in my body that seem new and different. I read a lot on how atripla got people's molluscum cleared, got rid of their yeast infections, gave them new appetite, I've yet to see all of those things, but I'm hopeful.

Good luck to you, keep us posted

Robert C.
May 17th, 2010, 07:12 PM
@SteelyDanny I was able to hide my hiv infection as long as I wasn't sick. But when I came down with pneumonia, they diagnosed me with pcp in spite of my continued denial. I refused a t-cell count, but they were able to diagnose the pcp using the chest x-ray and my symptoms -- it was pretty obvious.

Re: side effects. Other than a very occasional loose stool in the beginning, I've had no side effects from the ARVs (knock on wood). I've been on them now for 6 1/2 years. I do take a good amount of vitamins and supplements in an attempt to counter any possible side effects. I can't speak about the pectoral thing, but maybe you can ask your MD? I've had no body shape changes.

Just to be clear, I do believe I was in denial for several years. I took a normal coping mechanism to the extreme, and in the face of very real illness and symptoms, I continued to tell myself nothing was wrong. Ironically, my fears pretty much all disappeared once I faced the situation and started dealing with it (and, luckily, did it in time to survive). This is just my experience, and I know everyone chooses to deal with this in their own way, but I'm glad I woke up in time.

SteelyDanny
May 27th, 2010, 10:53 PM
I think I've read in here something to the effect that the antivirals may not be acting as antivirals per se, but actually as antibacterials. Whatever the case, the improvement I experienced from my illness was not a result of the Atripla. They did not start Atripla until after I responded positively to the antibiotic treatments. The doctor had me start Atripla because I guess that is the protocol for someone with tcell count below 200 and presented illnesses. Because I was able to wait and try other treatments before Atripla and showed improvement says to me that Atripla had nothing to do with my recovery. Also the fact that I am still on various antibiotics lets me know that Atripla can't necessarily "cure or treat what ails me." I feel that the doctor has me on Atripla as a way of increasing my tcell count and decrease my "viral load." I don't feel like this directly correlates with my health (what role it plays, if any, is the mystery to me). I'm just glad that I have not had much adverse affects from ANY of the medication I've been taking since Nov. 2009, other than what I've described in previous posts. I feel this will give me time to try and come up with an alternative gameplan that works for me but not necessarily for anyone else, because I don't want to be on this stuff for the rest of my life (and I'm looking ahead to my 50s, 60s, 70s and beyond when I say this).

I just felt I needed to clear things up, because I now understand how a person can not believe in a particular treatment but still undergo it for lack of other options, but not because of a sense of hopelessness or loss of zest for life.

Peace Everyone!

SteelyDanny
September 9th, 2010, 10:03 PM
Hello All,

Summer is coming to a wind-down and school is starting for me tomorrow. I have had a great summer, and I'm doing comparatively better than this time last year.

I am currently still on Atripla, acyclovir, dapsone and fluconazole, but several month's ago I decided for myself to start tapering off. The infectious doctor I'm seeing would not approve, so I'm deciding what I will be discussing with him when I have my appointment next week. The results from my last blood test from him probably wouldn't show any signs that I have starting the tapering, but I am wondering how to approach him and what my interaction should be.

I would like to discontinue seeing him, as I don't think he would continue to support me interrupting my drug regiment (he has been tapering the antibiotics, but unbeknownst to him, I have taken it a step further).

Currently, I am down to every-other-day with the medicines (except for the dapsone, which doc only had me taking 3 times a week- I've reduced it to two).

My first inclination is to not volunteer any info and just let him tell me what he will. I'm just stuck on the appropriate way of discontinuing seeing him short of cancelling the appointment and not showing up (it is quite stressful to have your phone "blowing-up" because your doctor is trying to get ahold of you and doesn't know why he can't get in touch with you). I don't think I should sign anything relieving him of any liabilities, but I want to thank him for his help and let him know that I've decided to take alternate routes for my health. Is anyone experienced in this type of crossroad navigation?

positivenegative
September 10th, 2010, 05:41 AM
@ steelydanny I don't have a similar experience however I would suggest given my knowledge of others on Atripla is to be aware that you could spiral down if you get off of Atripla because there are some psychoactive elements to Atripla where you could interpret your experience as failing in someway due to hiv but rather what you may very well be experiencing is withdrawal symptoms from the psychoactive drugs in Atripla resonating similar to opiate withdrawals.

I've even heard of those in poor countries selling their hiv drugs to those who will smoke the hiv drugs to get high.

Don't take my word for any of this but please do look into the side affects of tapering off or discontinuing drugs. It would be unfortunate to misinterpret withdrawal affects for hiv/aids disease.

Here's a link to BBC and a report on Africans smoking hiv drugs to get high.
http://news.bbc.co.uk/2/hi/7768059.stm

Anybody else want to chime in about this?




I am currently still on Atripla, acyclovir, dapsone and fluconazole, but several month's ago I decided for myself to start tapering off.

moonchild493
September 10th, 2010, 04:01 PM
Hi Steely (and everyone who might remember me),

I just received a nice email from Jonathan inquiring as to my well-being, so I thought I'd stop by and see what was going on. I must confess, I tend to be less anxious when not reading many of these posts.

In any case, I'm doing very well -- excellent labs and feeling quite well. The only prescription drugs I'm on are Atripla (I know -- you're saying "only!") and bioidentical hormones. My liver enzymes are great, as is my blood sugar, blood pressure and everything else they measure. I would love to ditch the Atripla, but my previous attempts at getting off the drugs did not go well in the end. That said, I did manage to taper off Atripla about a year ago with no obvious bad effects. I did resume when I developed a chronic salmonella, although the connection there is quite tenuous. I've take fluconazole on and off a few times when feeling I had yeast problems. But Steely, isn't it a long time for you to be on all those different drugs? Is it usual to take acyclovir for such an extended period?

You may be surprised by the reaction of your "infectious doctor". That makes me smile -- like you could catch something from him! Sometimes they're far more understanding than one would think. In any case, it's your health and your body and only you have the right to decide what you do with it. I am fortunate in having a very good team at Duke and Duke Integrative Medicine. Do you have access to any kind of integrative or complementary medicine in your area? It's nice to have the best of both worlds available, especially when everyone works off the same information.

I have always intended to once again attempt to get off the ARVs completely at some point, but things are going so well now, I hate to mess with things. Of course, if health or labs indicate a change is needed, I will reconsider and weigh all options.

If you can't have a good, honest conversation with your doctor, you might want to shop around. I'd want to know the time frame for staying on all those drugs, in his opinion. Please don't be afraid of expressing your concern regarding your health. I feel like I'm kinda rambling here, so I'll go now. I hope whatever you decide works out well for you, and please keep us updated so we know how you're doing and what is and isn't working for you.

Peace,

Linda

computergeek
September 10th, 2010, 04:13 PM
I'm glad to hear you are doing well Linda. Indeed, I was wondering (just yesterday) how you were doing, since you were one of those people here who specifically discussed how the drug regimen was clearly helpful to you.

Thank you for participating again, especially if you find the postings here stressful. I for one appreciate hearing dissenting voices and alternative viewpoints (especially when they come from someone that doesn't have to express themselves in ad hominem attacks!)

moonchild493
September 10th, 2010, 04:54 PM
Well, thanks, computergeek. It's nice to know people are concerned. I am no fan of allopathic medicine as a rule, but I'm finding it distressing to observe the increasing number of people here who get really sick and end up being carted to the hospital by ambulance or a well-meaning friend who insists they must go. Surely there must be a happy medium here. I'd love nothing more than to have natural medicine fix everything that has ever been wrong with me, but it just didn't work out that way. Of course, I take a bunch of well-chosen (I hope) supplements, but sometimes more acute intervention is needed. I found out for myself that if the natural stuff isn't working, you need to take the next step before things get totally out of control.

I don't want to hijack this thread, and I fear I'm going off on a tangent again, so...

Peace,

Linda

positivenegative
September 10th, 2010, 06:35 PM
@Linda How are you determining "the increasing number of people here..."?


I am no fan of allopathic medicine as a rule, but I'm finding it distressing to observe the increasing number of people here who get really sick and end up being carted to the hospital by ambulance or a well-meaning friend who insists they must go.

Kewlaid
September 10th, 2010, 08:28 PM
Hi Steely,

Brevity is not my strong suit but I have a medical emergency to attend to as well (at the Apple Store... hee hee).

Regarding Bactrim,Septra you may find this link interesting:

http://www.virusmyth.com/aids/hiv/hkpneumo.htm

I phoned a friend back east who worked for Burrows Welcome for 12 years. He confirmed that co-trimoxazole sulfa drugs are intentionally mis-categorized or people would be very wary of taking them. This class of drugs are actually a form of chemotherapy and not antibiotics. The mechanism of action is different to that of AZT the outcome is the same... damage or destruction of the mitochondrial DNA.

My story is listed under "Immune Building Nutrition?" I had PCP fungus running amuck. Once other diseases (TB) were ruled out, a MRI was performed. My lungs were lined solid white with a substance consistent with the texture of crushed ping-pong balls... this is described on many PCP websites. The next day a bronchial lavage was performed and PCP fungus was cultured. I watched the video... that was tres kewl.

I won't list the cofactors leading up to the PCP as they were numerous and specific to events in my life and yours will be different. It becomes obvious when one steps back and views the big picture, as to how a substrate was created in my lungs over a long period of time which allowed the fungus to flourish.

Nothing I say is to be construed as medical advice. It's up to each of us to figure out what has brought us to a particular point.

To Moonchild: I'm glad you have a program that is working for you and that you are happy with. I always have maintained that the best premise is to find out what works for you and go with that.

OOOOOo just saw the time... gotta go.

cheers to your health:D

SteelyDanny
September 10th, 2010, 10:09 PM
@posneg, thanks for that. I am aware that the CD4 cells will possibly go down and the "viral load" increase, and I recall a video I accessed from this forum a little ways back saying that stopping the drugs had shown to increased your chance of heart attack. If I start to show physical signs, like losing weight, the people around me that know of my situation no doubt will try to pressure me not to give up on the meds. At least I know that there are other explanations for ill health should I experience it, which should help me from freaking out completely and running to the nearest emergency room.

I originally made the doctor aware of my reluctance toward the meds when I was sick last year with PCP (a previous doctor that I ditched wanted to send me to counseling to get over my fear of the drugs, all the while saying he didn't want to make me do anything I didn't want to - the gentle coax approach). Again, they didn't start me on the Atripla until after I had recovered from the PCP.

I will likely just steer the conversation back to my original reluctance, and I already know the response could range from gentle coaxing to flat out rage on the doctor's part. I don't want to educate him or anything, just say my piece and if he's not on board then I start looking elsewhere (thanks, Linda).

positivenegative
September 10th, 2010, 11:06 PM
@SteelyDanny

My style would be to not share my reluctance because reluctance in their book could be considered a psychological disorder and reason for alarm. My opinion is you don't owe them any explanation for your reluctance especially if they don't ask for it. Be discreet and easy does it. If they ask you a question that you don't know how to answer in the moment excuse yourself to the bathroom and figure out your next move.

Know too that they are not out to get you but ironically their heart is in the right place and they really do believe they are helping you. Thank them and schedule out appointments way out and then call and cancel the day before if you don't want to deal with it.

Contact Karri Stokely. She has an inspiring story and her experience should help you. She got off the drugs on her own without her doctors permission. http://www.karristokely.com/ She goes by kstokely2 here on QA.


kHKeq9ZkGJg








I will likely just steer the conversation back to my original reluctance, and I already know the response could range from gentle coaxing to flat out rage on the doctor's part. .

BuffaloBoy
September 11th, 2010, 02:00 AM
Steelydan: Are you planning to stop all the drugs you are currently taking, including Atripla?

Kewlaid
September 11th, 2010, 05:33 AM
Hello All,

I am currently still on Atripla, acyclovir, dapsone and fluconazole, but several month's ago I decided for myself to start tapering off.
I would like to discontinue seeing him, as I don't think he would continue to support me interrupting my drug regiment (he has been tapering the antibiotics, but unbeknownst to him, I have taken it a step further).

Currently, I am down to every-other-day with the medicines (except for the dapsone, which doc only had me taking 3 times a week- I've reduced it to two).

Is anyone experienced in this type of crossroad navigation?

Hi,

I just sent an email to a long time friend to see if I can give you his personal email. He's been on about every cocktail combo there is, developed the hump, pcp, meningitis. He had no idea of the dissident pov with all this and actually worked many years for a major pharmaceutical corp... so I guess no surprise he was rather cocooned.

He quit Atripla and whatever else he was taking just over a month ago and says he actually is seeing his old self for the first time in about 12 years. I'll keep you posted as he had quite a bit to say about it all... perhaps he'll just permit me to share pertinent parts of personal emails.

cheers to your health.

moonchild493
September 11th, 2010, 01:43 PM
positivenegative,

I just have read and reread some posts, and noticed that there are more than a few who have allowed themselves to become really ill, even to the point of not being able to move under their own power, before being carted off to the hospital. I think that's sad that it comes to this point, even though many have tried natural means that apparently were not working. I was not quite to that point myself when I asked a friend to take me to the emergency room, but I had been trying for months to figure out what was wrong with me, and consulted a whole bunch of doctors, some natural and some not. Then I got the fateful diagnosis in the hospital...It just seems sad to be so afraid of western medicine that one would possibly risk one's life before resorting to it after all other avenues were explored. I'm a major proponent of doing things as naturally as possible, but it doesn't always work for me.

Linda

positivenegative
September 11th, 2010, 04:39 PM
Linda
Thank you for your response. I've been reading this post for several months now and I don't know what posts you are referring to. Would you please offer some (all) links to the pages you are referring to. Thanks.


positivenegative,

I just have read and reread some posts, and noticed that there are more than a few who have allowed themselves to become really ill, even to the point of not being able to move under their own power, before being carted off to the hospital.

moonchild493
September 11th, 2010, 04:57 PM
I'm afraid I have neither the time nor the inclination to do that right now, but we have SteelyDanny himself, gladalive, jee, fondoo and I'm sure some others. A few of these may have taken it upon themselves to get help without actually being dragged to the hospital, but it was after becoming extremely ill. If I happen upon any more, I'll make note of them and let you know, if you wish.

Sorry I can't be more helpful at this moment.

Linda

positivenegative
September 11th, 2010, 05:08 PM
Thanks Linda. I just needed some clues. If any of the persons referred to who are reading this post if they would kindly respond to me by sending me either a link to their story or share with me after how much time did they decide to go to the doctor and whether traditional medications were implemented would be nice. I'm interested in time lines too as well as illicit drug use history or not.


I'm afraid I have neither the time nor the inclination to do that right now, but we have SteelyDanny himself, gladalive, jee, fondoo and I'm sure some others. If I happen upon any more, I'll make note of them and let you know, if you wish.

Linda

moonchild493
September 11th, 2010, 05:33 PM
You're welcome. I regret that I'm not really up to much more than expressing the occasional opinion on what I observe or telling my own experiences. The scientific stuff I'll leave up to those more familiar with it, though I did do a bunch of research when I first discovered the dissident perspective. I'm kinda burned out on that now and mostly interested in what happens to people in this situation, what they do about it, and how it can be helpful to others. Of course, I'd love to get to the bottom of what is really making us sick. I'm not so concerned about a simple positive test, since I doubt it's necessarily important, although I don't think we can say definitively that it might not indicate a tendency to develop certain illnesses. I definitely don't believe in toxic drugs being used as a prevention.

By the way, I know of a woman who contacted me personally who had a positive test and went on to develop toxo. She used all manner of natural methods until one day she just fell down in the street and was rushed to the hospital. She has since become a firm believer in the existence of HIV and the wonders of conventional treatment. We still correspond some, though I always bristle when she wants to know how my "numbers" are. Apparently, she is still doing splendidly and last I heard was pregnant, though I'm sure it was through IVF. Heaven forbid we should risk "infecting" our partner! So it does indeed go both ways.

Please forgive my rambling, but I find the human condition both fascinating and frustrating.

Linda

SteelyDanny
September 13th, 2010, 07:28 PM
A "condensed" version of my history:

-In my mid-to-late 20s, involved in numerous studies/questionaires over a 3-5 year period targeting African-American gay males (regular testing and sex history questions, but did not participate in any drug trials). My sex habits rarely include the exchange of bodily fluids deemed "unsafe" and no health issues, always testing "HIV negative". No recreational drugs except for the very rare (once or twice a year-ish) social partaking of marijuana. Didn't start drinking alcohol routinely until my 30s, non-smoker (cigs).

-On the very last visit of a particular study, test results came back "HIV positive" (week of 32nd birthday). Had been dating a "steady" for 8 months before our first "fluid exchange". Informed this partner of my new status, and months later he tested positive as well (he had not been tested regularly).

-Saw first doctor for 8 years without pressure of starting cocktail, starting with a cd4 count of 500-600. When the numbers dipped to 180 in Year 8, the pressure was ON and I ditched that doctor (not to mention I had reason to believe doctor had discussed me by name with another one of his patients, also an acquantance of mine).

-Started seeing a naturopath who also had criticisms of the HIV/AIDS dogma. started taking supplements and diet change to fish/chicken, no dairy, etc. Also had a wisdom tooth removed that was piercing my sinuses.

-Started losing weight and appetite (not sure what order) gradually got weak over a 6 month period (during 2009). Eventually too weak to even climb stairs or get up from couch to go to the restroom.

-Finally taken to emergency room (did not volunteer any history) and the multitude of tests that were run yielded a diagnosis of PCP. That's when my mother put 2 & 2 together - she had just gotten over pneumonia, but didn't have the kind I had. Years of keeping my "little secret" finally released and feeling a load lifted, not to mention an abrupt slow-down from trying to burn the candle at both ends in 2009. It caught up with me and I now know not to try and do "everything".

-Returned to work after a 10 week short term disability leave in January 2010 and continued seeing infectious specialist to present (currently 43 years old.)

HansSelyeWasCorrect
September 14th, 2010, 07:57 PM
How was the PCP diagnosis done (biopsy?)? When I was in terrible shape, one thing I did not do was to take "medicine," even antibiotics. The only thing I did was to take a wafer drug for oral thrush (10 days or 2 weeks, don't remember), and it cleared up totally. Because of my job at the time I was able to do very little and sleep as much as I wanted. My lungs have always been very good but then again I've never even smoked a cigarette, let alone done any illegal drugs (I think I smelled marijuana smoke at an NBA game back in the 1970s; that's as close as I've gotten to illegal drugs). My weak point is my stomach, since I was an infant, and it was only around 8 years ago that I realized that I needed to take stomach acid supplements (though I haven't for a few years now, since that was "cured").

I don't eat any "meat," but huge amounts of dairy (but none with carrageenan in them). I eat very small amounts of nutritional yeast and gelatin with each meal, which I believe provides what meat does without any of the problems of meat (HCAs, high glutamic acid content, too much iron, etc.). If you want to know more about my research my site is at:

http://thescientificdebateforum.aimoo.com/

I'd like to know what medications you've taken and are taking, if your exercise, if you've had transfusions or chemotherapy, etc. Any other information would be helpful, including health problems you had when you were a child. If you don't eat properly you are complicating the issue because some of the symptoms may be due to malnutrition or PEM.

SteelyDanny
September 15th, 2010, 08:40 PM
My PCP was diagnosed with biopsy (if organism exists in everyone's lungs, what quantity needs to be biopsied for a PCP diagnosis?)

No medications until I was admitted into the hospital almost a year ago. On strong antibiotics as far as I know. I asked for medical records and got a condensed version (so much had been accumulated from tests and such during my 11 day stay).

No childhood health problems other than bed wetting and a picky eater until puberty (no restrictive diet and maintaining a steady weight of 145 for years), and a hernia operation around age 13 (only other hospital stay until recently). In my 20s, an 11 year stint without seeing a dentist, and still managed to get compliments on my teeth when I started back going. Didn't become sexually active until after highschool.

Atripla was not started until beginning of this year (a few months after hospital admission). Also diagnosed with herpes, low oxygen and high heart rate (probably due to the stress of my situation then). Medications (only since Nov. 2009) include Acyclovir, Fluconazole, Azythromicin, Prednisone, Bactrim/Dapsone, some type of water pills... don't have the list with me. But these have been tapered off by the doctor, so now I'm down to just the Atripla, Acyclovir, Dapsone an Fluconazole.

BTW- I didn't confront the doctor at this weeks visit. I just answered direct questions and kept it simple. Made another appointment, but I'm going to make an appointment with my naturopath before then and have another perspective on my medical records. Results from blood draw a few month ago were <46 for "viral load" and 199 for CD4 count (though I don't put much stock in those numbers). Doctor seems to think I could be down to just the Atripla soon. I must not be showing signs in my labs yet of tapering off beyond the doctors instructions).

positivenegative
September 15th, 2010, 09:01 PM
Excellent question below.

I'm curious too if you had gotten vaccination rounds and if there may be a connection to ill health. My sense is that vaccinations could wipe out years of naturally built immune strength but when a vaccination is employed it theoretically gives immunity but at the price of knocking out natural immunity.

I never got that far in my diagnosis and with the exception of the hepatitis vaccinations have not been vaccinated since childhood as I got a Hepatitis vaccination a couple years earlier and subsequently had gotten flu like symptoms several times up until my "positive" diagnosis but since my health has never been better.

I will be approaching two years as "positive" this Winter.


My PCP was diagnosed with biopsy (if organism exists in everyone's lungs, what quantity needs to be biopsied for a PCP diagnosis?)

HansSelyeWasCorrect
September 16th, 2010, 03:42 AM
SteelyDanny:

You've taken a lot of medications that can be strongly immunosuppressive. I'm not sure I understand why you've taken all of them. Could you give us some idea about when you took them, for how long, and for what reason?

In any case, I suggest you check to see if you've got enough stomach acid (or your doctor can do it), because if it's really low that can kill you (you will waste away, which is what happened to me). You can also buy Betaine HCl pills and take larger and larger amounts with each large meal until you feel warmth or burning, which means that you've taken too much (you can then drink water to neutralize it). Another thing is to take small amounts of gelatin, to rebuild tissues that need it. A B complex supplement is also probably needed (I'll guess you are at least low in B12). Then there is beta carotene. I would take at least 25,000 units in the morning and another 25K at night (this is good for fungal and viral infections). Of course, you need to start eating enough calories, and enough high-quality protein. Can you eat boiled eggs? Also, try to eat antioxidant-rich foods with each meal. Organic blueberries, dark chocolate, etc. You can also drink coffee, just don't add milk (I drink mine cold and plain). And if you don't get enough salt you can't produce enough stomach acid. If you can afford it, get Celtic Sea salt.

Kewlaid
September 16th, 2010, 10:23 PM
Hey Steely Dan,

My friend got back to me with some info for you.

"Dapsone is distributed throughout total body water and is present in all tissues. However, it tends to be retained in skin and muscle and especially in the liver and kidney: traces of the drug are present in these organs up to 3 weeks after therapy cessation" --- from:
http://dermatology.cdlib.org/DOJvol8num1/reviews/dapsone/wolf.html

My friend is not a doctor or researcher .... he worked for 12 years for a major pharma corp. Do not take this as qualified medical advice.... it is based on company feed back and his personal experience
NONE of these non-HAART drugs are necessary AT ALL. I would say, you'd be better off taking Atripla for a while then any Dapsone, or Sulfa antibiotics or Fluconazole unless ABSOLUTELY necessary due to ACUTE infections specifically identified. It just doesn't make any sense to me to take constant antibiotics or antifungals and NOT EXPECT your body to develop resistance....you see it's not actually your body developing resistance to the drug...but the actual fungi or bacteria...and they can do this almost ALWAYS when exposed constantly to the same enemy..they are very resilient and the human race will never be rid of them. In fact, the whole methicillin thing was discovered in a Sardinian sewer (Wikisearch "Methicillin")...which suggests to me that the whole reasons antibiotics exist is because certain 'good' bacteria developed resistance to the bad bacteria in a sewer filled with all kinds of disease.

SteelyDanny
September 17th, 2010, 08:00 PM
Don't worry. I would not blindly take (med) advice from people over the internet. Just want to exchange experiences and gain more insite. I thought I had answered most of the followup questions in my recent posts, but to elaborate even further:

1. Hope I didn't give the impression that I'm underweight. I'm currently 10 lbs heavier than my normal 145 lbs, and I'm only 5' 7"-ish height. Since puberty, I've always eaten a nice variety of foods (I grew up on the "4 Food Groups," pre-"Pyramid").

2. November will be my first full year of taking these antibiotics and a few months less than that for the Atripla.

3. I haven't gotten any vaccinations in years (except for something for Hep C they were urging the gay community to get about 6 years back).

4. The doctor prescribed all these medicines due to my PCP diagnosis, and I figure he continues to prescribe as a prophylaxis.

I understand these drugs to be immunosupressive in their own right, but that is the price of seeing an allopath. I pretty much have to be my own scientist to see how tapering off the drugs are affecting me (at least from a "how do I feel" standpoint) while lying to a doctor to at least still get some labs done. I do have access to a naturopath that I can be completely honest with, which is where I currently find my situation - making an appointment and having my records viewed from an alternative viewpoint. Still, the end decision is mine.

My limited experience has been that if you don't want to follow the doctor's advice, then you are on your own. How have others "divorced" a doctor? I could just cancel my future appointment and not take his calls (been through that stressful mess before), but if there are ideas about a better way of doing this, I'd like to consider.

HansSelyeWasCorrect
September 17th, 2010, 08:27 PM
From what I've read, taking these "medications" puts the person in a kind of "death spiral," with possibly a few "ups and downs." You didn't mention if you take the meds every day of the year, but if you do (or most of the year) I can't imagine it being the right thing to do. The problem is that medical doctors don't know what to do, and they just prescribe and hope for the best. Could you tell us how often you've taken the meds over the year period and also what the dosages are? I think this would help give us a sense of what doctors are doing to "HIV positive" people who have PCP.

Let me make clear that I am not suggesting that any pneumonia is to be taken lightly. There have been cases in recent years of "celebrities" who are "HIV negative" actually dying of it (as we've discussed on the site), and in those cases there was no claim that it was PCP. All I can tell you is what I think I would do, and why, and then you can make your own decisions.

SteelyDanny
September 17th, 2010, 10:23 PM
My current DOCTOR PRESCRIBED schedule is
Acyclovir- daily, 200mg a.m. and 200mg before bed;
Atripla- (600mg efavirenz, 200mg emtricitabine, and 400mg tenofovir) one before bed;
Dapsone- daily, 100mg in the a.m.;
Fluconazole- 100mg in the a.m. on Mondays, Wednesdays and Fridays.

But I have done my own prescribing and I'm down to almost HALF What the doctor thinks I'm taking, working my way to ZERO:
Acyclovir- 200mg a.m. and 200mg before bed on Mondays, Wednesdays, Fridays and Saturdays;
Atripla- one before bed on Mon, Wed, Fri and Sat;
Dapsone- 100mg a.m. on Mon, Wed, Fri and Sat;
Fluconazole- 100mg in the a.m. on Mon and Fri.

So I'm down to half my prescribed dosage, and I have been on meds DAILY since leaving the hospital in Nov. 2009 (once you can take medication orally, the hospital has to send you home or insurance won't pay for it). My doctor discontinued the following gradually: Azythromicin (originally 2 every Friday- a few months of that); Bactrim (one daily, but was switched out for the Dapsone); and Prednisone a few times a day; and a water pill (?) half a pill a few times a day.

Gos
September 18th, 2010, 04:53 PM
My doctor discontinued the following gradually: Azythromicin (originally 2 every Friday- a few months of that); Bactrim (one daily, but was switched out for the Dapsone); and Prednisone a few times a day; and a water pill (?) half a pill a few times a day.


SD,

If you have a history of candidiasis or any other fungal infection, you want to be extremely careful with prednisone or other corticosteroids. They're notorious for increasing susceptibility to fungal infections.

jonathan barnett
September 18th, 2010, 04:59 PM
As well as bone loss and necrosis, as I learned the hard way from experience.


SD,

If you have a history of candidiasis or any other fungal infection, you want to be extremely careful with prednisone or other corticosteroids. They're notorious for increasing susceptibility to fungal infections.

Deksman2
September 18th, 2010, 05:14 PM
Hm ...
I might be reading the forum incorrectly (and do correct me if I'm wrong), but I'm getting that sometimes people who react positively to the HIV 'anti-body' test, they end up suffering from a fungi infection (turning into PCP at some point).

Kaposi Sarcoma (KC) appears to be disregarded for the most part, and the focus remains on PCP.

Is it possible the HIV antibody test is reactive because people end up infected with a fungi causing PCP?
Is it also possible this is one of the reasons for declining CD4T cells?

Is it theoretically possible that in fact, we end up getting infected with a fungi that triggers HIV genetic material (if it's abundant in our system in the first place) to become active, but as such is not harmful, but it's the PCP that's causing it?

I already asked this question in another thread, but I wanted to post it again (or it might be better to open up a new topic altogether).

Yes, it would seem on the other hand that the OP seems to be prone to fungi infections though (although I could be wrong).

Gos
September 18th, 2010, 06:33 PM
As well as bone loss and necrosis, as I learned the hard way from experience.


As did I. I still have osteoporosis, a decade after getting off of prednisone.

Gos
September 18th, 2010, 07:19 PM
[QUOTE=Deksman2;43897]
Is it possible the HIV antibody test is reactive because people end up infected with a fungi causing PCP?
Is it also possible this is one of the reasons for declining CD4T cells?

Is it theoretically possible that in fact, we end up getting infected with a fungi that triggers HIV genetic material (if it's abundant in our system in the first place) to become active, but as such is not harmful, but it's the PCP that's causing it?

I already asked this question in another thread, but I wanted to post it again (or it might be better to open up a new topic altogether).[QUOTE]


These are all potentially valid interpretations of the facts on the ground. For some of the things you propose, you're not the first to suggest this or something like it.

Which is one of the reasons we have a discussion forum like QA. There can be no progress in understanding without the proposition of hypotheses, the examination and re-examination of available evidence, and the discussion of same. Scientific research can generate all the data that it can, and it won't result in progress unless people are willing to discuss hypotheses in the light of the data. (Which is not to say that this guarantees progress, just that without it progress is impossible.)

Gos
September 18th, 2010, 07:34 PM
As did I. I still have osteoporosis, a decade after getting off of prednisone.


...Incidentally, when I was diagnosed with OP, my doctor recommended this great new drug called Fosamax.

Today, Fosamax and other drugs like it have been implicated in a disfiguring condition known as "Fossy Jaw (http://en.wikipedia.org/wiki/Bisphosphonate-associated_osteonecrosis_of_the_jaw)", (or "Phossy Jaw (http://www.dentistryiq.com/index/display/article-display/364090/articles/rdh/practical-hygiene-applications/the-return-of-the-dreaded-phossy-jaw.html)") so named by dental professionals after Fosamax. (The two different spellings refer to two different versions of the same disease. "Phossy" jaw was a 19th century occupational hazard for workers who worked with phosphorus, thus it was named for phosphorus, while "Fossy" jaw is associated with biphosphonate drugs like Fosamax and Boniva, and is named for Fosamax.)


...MAN, am I ever glad that I told my doctor to fold that prescription until it was all corners and jam it about as fast and far as it would go!

HansSelyeWasCorrect
September 18th, 2010, 07:44 PM
Gos: I had severe osteoporosis several years ago, based on the bone scan, and now I don't (had a bone scan done again). I bought some calcium citrate and took a little with each meal (and I also eat a lot of dairy). My doctor also suggested Fosamax, but when I read about it, I was concerned that it would disrupt normal biochemistry too much. I don't think I've ever been on Prednisone or anything similar, but then again I've probably only taken antibiotics a few times in a twenty year period (for 5 days to 2 weeks at most). After reading about all the "medicines" SteelyDan is on, for so long, I'm surprised he's still with us! To me, that is malpractice.

Gos
September 18th, 2010, 07:47 PM
If overmedication is malpractice, the entire medical profession needs to be sued back to the Stone Age.

Deksman2
September 18th, 2010, 08:15 PM
SteelyDan likely has a higher tolerance for drugs in the first place and tries to take care of himself apparently (at least from what I was able to gather).

I noticed that a lot of people (although not all because others will likely be less tolerant due to their biochemistry in the first place) who do end up with adverse side-effects and have a lower tolerance overall to various drugs usually smoke and consume plenty of alcoholic beverages that further decrease bodies capabilities.

Medications are supposed to be used as a last resort because of their toxicity.
Some doctors realize this and will not put their patients on drugs unless absolutely necessary.

SteelyDanny
September 21st, 2010, 04:20 PM
@HansSelyeWasCorrerct: see post #55, I added the dosages.

HansSelyeWasCorrect
September 21st, 2010, 08:20 PM
Okay, so how long have been on this regimen and how much longer are you supposed to do it, or is it supposed to be indefinite?

SteelyDanny
September 22nd, 2010, 10:27 PM
November will be a full year, but the doctor had decreased the drugs and dosages to the current schedule. The doctor seems to think I can be off of everything (except the Atripla) soon. Maybe by year's end, I'm guessing.

Brian Carter
September 23rd, 2010, 05:59 AM
"The doctors seem to think" Yes my friend, but is this what you think and why not include Atripla? Did you see the post I made here (http://forums.questioningaids.com/showpost.php?p=44086&postcount=5)?

SteelyDanny
September 24th, 2010, 08:59 PM
Now I'm starting to get a little frustrated. I'm taking a big risk exposing details of my health history, and I keep getting asked the same questions over and over again. Please read, I may have already answered the question, that's all.

Just a few posts earlier, I stated that I am tapering MYSELF off of all the drugs. I don't have a handbook on the proper way to do this and at present I don't have the medical support for such a move. There are many ramifications for being one's own doctor/scientist. Eventually, I will run out of doctors I can ditch and no one will want to treat me for anything. I'm taking this thing slow and trying to plan every step. I listed the dosages my doctor THINKS I'm taking, and listing what I've actually been taking.

I participate in this forum not for anyone to tell me what to do, but to share experiences so that I can get a range of possible outcomes for various paths and then decide for myself what risks I'm willing to take for myself. My doctor is probably just as suprised as everyone else that I'm not showing adverse side effects from the prescribed drugs, and he may be getting a little suspicious about whether I'm following his prescription. I have LIED to him and said that I am.

Maybe the length of my posts deters many from reading them through, but this subject matter cannot be easily summed up in a few sentences. I do appreciate all the feedback I've been getting, though.

jonathan barnett
September 24th, 2010, 11:04 PM
Hi SteelyDanny.

I can understand why you might feel frustrated, and I can see how others here may have missed some of the things you've said.

I scanned this thread to see if there was something I've missed, and what I notice is that it started seven months ago on February 25, and has had 69 posts since then.

During that same time there have been a lot of other posts and threads and comments made all over these forums, competing for our attention.

You've provided a lot of information during that time, but it's scattered in several posts over a long period of time and at different points of your journey so far.

A lot of us with health problems are trying different things: nutrition and supplements; alternative drugs (like low dose naltrexone); spiritual or energy healing; reprogramming what we believe; and more.

I used to be hopeful that someone would find "the answer", but the more people I get to know, the more I learn how unique we are as individuals and how varied the problems we experience can be. Any answers are surely going to be as varied and individual. Some get KS; some PCP; others avoid "AIDS-defining" illnesses, only to suffer, or even die from something even more mysterious and inexplicable.

A place like QA can provide some support and information, but it is probably futile to expect to find "the answer" here.

As hokey and messed up as it sounds, I think we're all ultimately on our own to discover what works (or doesn't work) for ourselves, though I reserve the right to change my mind about that.

I quit all ARVs cold-turkey seven years ago and I don't remember having any serious withdrawal symptoms, but for one thing I was pretty fucked up with all the other drugs anyway, and secondly, I wasn't taking Atripla. Others report agonizing withdrawal. No one is likely to have a tried-and-true, tested and proven tapering program, so you're going to have to trust your intuition and then listen to your body about that.

I've also come to the conclusion that with very few exceptions, especially outside the largest and most diverse metropolitan cities in the US, like NY, LA and maybe a couple of others, it is very difficult to find a competent alternative or TCM doctor. However, I have managed to find some good help from people train to help us find our own answers, or just "tune in" a bit better, and that includes trades like acupuncture, meditation, biofeedback and even dietitians and shamanic hypotherapists.

These kinds of healers can probably even be found in back woods cabins in the Ozark Hills. Maybe it is helpful to distinguish between "doctors" and "healers".

While not following a straight line, or a level grade, my personal path seems to continually return to some form of understanding there is a mind-body-spirit connection that affects our health. I'm not so "woo-woo" as to think I can fix all possible acute medical problems myself.

I resort to the allopaths if I need a broken bone set, a dislodged kidney stone removed, or a DVT blood clot broken up, for example, and I will always be grateful that medical science has some great drugs for relieving pain during these ordeals.

The more complex, chronic illnesses that affect too many of us strike me as symptoms of unhealthy living and should be addressed as such.

And then there are those conditions that fall somewhere in between that probably best respond to some type of integrative intervention.

I still find myself constantly being side-tracked from what it is I'm really supposed to be trying to do. For starters, just be healthy. War is the ultimate illness, so stop waging war on disease. Stop engaging in arguments (so don't ask me: "why are you here?!") and lower stress, the hardest advice to understand, let alone follow that anyone can give you.

I don't look inward often enough to ask myself metaphysical questions like "why am I really here and what do I want to accomplish in my life?" I don't look outward enough to see how the planet heals naturally when it is wounded or sick.

If your posts are too long for folks to follow, then some of mine are hopeless. I'm not offering any advice, I am just responding to your comment about being frustrated. So am I.

I hope you find the best path possible for yourself. I'm encouraged by what I've seen you post, and I hope you find enough information and insight valuable enough to take away from here to have made it worth your time and effort.

FWIW, you've helped me.

HansSelyeWasCorrect
September 25th, 2010, 04:06 AM
Below is part of a private message I sent to another QA member. I will just add here that I don't have a problem, in general, with taking something like antibiotics or anti-inflammatories for a couple of weeks, unless I thought the medication was dangerous. Moreover, in an "emergency" situation, the doctor might say that you need to take a certain medication for months or risk death (and you will have to decide for yourself what to do). However, my belief at this point is that chronic use of medication is detrimental for your health if you are not old, unless it is for a deficiency or dysfunction that is known (such as insulin/diabetes). Here is the old message:

My thought is that your body chemistry is really "off balance," but the "good news" is that I think it is very easy to "cure." As to stomach acid, I bought a supplement called Betaine HCl, which is a form of stomach acid (made from beets, I think). As I read in a book called "Digestive Wellness," I took a small amount in the middle of a meal, and then with every meal I took a little more until I felt a little warmth in the stomach, which tells you that you took a little too much. You then take the amount you did with the previous meal. Only take such supplements with a large meal that contains substantial protein. So, if it's fruit and a salad, you don't take these kinds of supplements, though you can take digestive enzyme supplements if you like.

What I suggest is to eat a certain kind of diet, which is rich in antioxidant foods and high-quality protein (such as cheese and boiled eggs, though avoid soft cheese). Butter, milk, sour cream, cottage cheese, and cream cheese are fine, so long as they don't contain carrageenan. However, do not cook them or put them in hot tea or coffee. Coconut is very good too. What you want to avoid are meat and highly unsaturated oils. And you never want to consume these oils if they have been heated. Coconut oil or butter are fine, but again it's best not to heat them. I don't eat any hot food any more, for example. Ice cream is fine too, just make sure it's got no carrageenan in it. I suggest chocolate or coffee ice cream (Hagen Daaz is good). You can also eat things like blueberries and other fruit (organic is best) and dark chocolate (70% of more cocoa content). Avoid milk chocolate.

Do not "exercise" or do anything that is stressful to you. You should take small amounts of nutritional yeast with each meal (no other kind of yeast, though). My guess is that you could also use some magnesium citrate (which is actually used to make sour candy) and copper (small amounts only). Lastly, beta carotene is very important. Take as much as you can each day, splitting it up with each meal. One doctor prescribed 100,000 iu for my plantar's wart, which is viral, according to him, and it took 7-8 weeks to go away. I can't tell you how much to take, and you should ask a doctor, but if I were in your position I would consider 50,000 iu as a minimum each day. Now I take 25,000 iu every few days, but I really don't have any reason to do so, other than preventative,

Hope that helps! If you have more questions, feel free to ask, and please keep me updated. If you have the time, please keep detailed notes. I wish I had done this when I was having major health problems back in 2000-2001. Obviously, drinking, "recreational" drugs, smoking, staying up all night, etc. should be avoided.

NOTE: If you are on a medication or if you are an alcoholic or drug addict, you may need to wean yourself off of the substance over time, so I strongly suggest you consult an expert about this possibility before just stopping "cold turkey."

SteelyDanny
September 29th, 2010, 04:46 PM
Thanks Jonathan,

I realize this thread started back in February, but since I returned to it more recently, I retell key parts of the story to make it easier for newer readers. Some of the recent questions (such as how long I had been taking these drugs), were answered only a few posts back.

Whatever is keeping people from seeing information in the threads as recent as 3 or 4 posts back (at least on the same page) could also be leading to some of the debate frustrations I often read and follow.

Again, I appreciate all the feedback, just gets frustrating when I give a time period and in the very next post the question will be "what is the time period?" I'll work on being more clear and concise. :)

jonathan barnett
September 29th, 2010, 09:09 PM
You might consider writing your story in one place where you can update it and then link to that. That way the information won't be spread out over so many different posts and tangents.

There are several ways and places you could do this online and if you want to discuss doing that, feel free to PM me.




Again, I appreciate all the feedback, just gets frustrating when I give a time period and in the very next post the question will be "what is the time period?" I'll work on being more clear and concise. :)