Severity of ARV side-effects vs severity of CFS

[WestOzGirl]

In my view, treatment may not only involve ARV's but could include several combinations eg. ampligen, rituximab or a totally new class of drugs.

 

[ukxmrv]

Sasha, in an email you said

"That's a very interesting approach - even in the UK, if we at least get an XMRV diagnosis, we can maybe get referral to an HIV clinic. By the time a sensitive and specific test is availble in the UK, the research will have moved on anyway and we might be much nearer to causation having been proven."

I am XMRV+ and the local HIV clinics have refused to see me. My local PCT will not offer any treatment or immune system testing. Nothing

 

[SOC]

Very well put. Before they diagnosed me, my HMO sent me through many specialists including an ID doctor. Ironically enough, though he was the doctor I actually liked best - very smart, and didn't talk down to me because he said he could tell I was an "intelligent person" - he was also the only doctor to tell me that he doesn't really believe CFS exists, or at least that he doesn't believe it has an infectious cause.

What I did learn from him is that at my HMO (Kaiser Permanente, a major HMO in many US states) HIV positive patients are assigned to ID doctors as their primary care physicians. So *every* decision about their care is made by a doctor who is expert in treating HIV+ patients, knows the implications of what you do in a 'healthy' person versus what you do with someone with this underlying condition, and is expert in handling the HAART drugs and their side effects. So many advances have been made in HIV drugs, I think it's very true that today's regimes are much better tolerated than the early versions, and patients and doctors have more options than they used to.

I can envision a future in which ME/CFS patients are handled the same way. Can you imagine? - having a PRIMARY CARE doctor who thoroughly understands your condition, how to interpret your test results and symptoms in light of it, and how to manage your drugs and treatments? I know it's a crazy dream, but it sounds like heaven!

Wow, I wish our medical monopoly was that good. **sigh** Mine's more of the "If you can't test for it with standard tests, it doesn't exist" type.

I do dream of that heaven -- the one with an understanding PCP. No so much for myself as for my daughter, who was in remission until she got inappropriate treatment from her PCP. I want her future to, well, BE a future.

 

[Sasha]

Sasha, in an email you said

"That's a very interesting approach - even in the UK, if we at least get an XMRV diagnosis, we can maybe get referral to an HIV clinic. By the time a sensitive and specific test is availble in the UK, the research will have moved on anyway and we might be much nearer to causation having been proven."

I am XMRV+ and the local HIV clinics have refused to see me. My local PCT will not offer any treatment or immune system testing. Nothing

I'm really sorry to hear that. I wonder if this will be the case across the board or whether it will be a question of just being lucky enough to have the "right" PCT and HIV clinics (the postcode lottery rides again).

I hope the science starts to move faster so that even the UK is forced to get its act together on this. People seem confident that the pace of discovery and publication will accelerate now - I hope that's true. It will be interesting to see if anything comes out of this upcoming XMRV conference in early September that could help.

 

[Mya Symons]

I'm looking 6:tear: square in the eye like a gun barrel. I can't afford to wait around for a decade??? of tests and trials. What, get my health back at 70? I'm sick of my mush brain, not being able to go anywhere, the pain, losing weight, loss of appetite, exhaustion, etc. I want to get in a trial or get the drugs. My heart isn't too great anyway with the POTS and all. I consider myself not to have been alive the last ten years.

I agree. I have been sick for 10 years and I want to go back to school. I am 40 now and if I don't go soon I never will. Further, if my son ends up having this, I don't want time to make him sicker.

I can't imagine how tough it must be for people who have been waitng 20 or more years for answers. Does anyone know the average time it takes after a virus has been discovered (after they figure out just what that virus does to the body and clinical trials of drugs to treat what that virus does) that medical treatment finally reaches the mainstream medical doctors? Most doctors are so afraid of lawsuits or reprimands that they won't give out any medication that isn't approved by the FDA or treat any infectious disease unless it is recommended treatment by the CDC (unfortanately). What would be the average estimate on how long this will take and how can we speed up the process?--especially regarding prescribing antiretrovirals

 

[Peggy]

I think it is definitely a risks/benefits analysis. But I also think anyone who watched AIDS patients dying in droves, then some patients rescued in the eleventh hour by the new cocktail drugs, wouldn't have the illusion that these drugs aren't powerful. I met a teenager with AIDS right before the HAART drugs came out. At that point, his death seemed inevitable. When I saw him a couple of years later, he was jubilant -- his viral load was next to nothing, he had his life back. From HAART therapy. He had previously not thought he would live to see 20.

One thing they do know about AIDS is that certain organ damage -- such as cardiac damage -- is more evident now because the disease has been allowed to progress, thanks to the drugs allowing people to live longer. In other words, there was a lot of potential organ damage happening already, but nobody could see how bad it was because patients were not living long enough for it to play out. We know from Dr. Martin Lerner that ME/CFS patients have various infections in their hearts, including many that are known opportunistic infections in HIV/AIDS. So I think we can certainly conclude that the retrovirus is likely allowing these secondary infections, since they are so varied, and treating them aggressively to prevent heart damage might be wise. Some of us have known heart damage. I have had a secondary bartonella infection for almost six years that became highly opportunistic and almost killed me. Bartonella is linked to cardiac deaths in AIDS patients as well as AIDS dementia complex. And personally, if I don't take toxic bartonella drugs constantly now, I relapse significantly.

Most likely if I treated the retrovirus, I could in time go off of the bartonella drugs, and the antibiotics I'm on for secondary Lyme. But as long as I have a non-functioning immune system, these secondary infections are out of control. So it's a toss-up: do I take liver-toxic Rifampin, which requires ongoing liver testing, which already elevated my liver enzymes once, until I just burn out my liver? Or do I treat the underlying cause, which is likely the retrovirus?

I did not have the phenomenon of opportunistic infections, except for things like candida, until my ME/CFS was very progressed -- but candida alone is a sign in HIV that it is progressing to AIDS. So even secondary signs like that in ME/CFS can't really be taken lightly.

Many of the cognitive problems ME/CFS patients have, if seen in AIDS patients, would be considered precursors to AIDS dementia complex and aggressive therapy with ART drugs would be indicated. These can be symptoms as simple as slowed thinking, which many of us have.

My greatest concern is possible mitochondrial toxicity. Does anyone know about the three potential drugs for XMRV and their mito toxicity profile?

Also, I read that low dose naltrexone might help mitigate some of the dangers/side effects of AIDS drugs, so taking it simultaneously might be a good call. I also read one study about zinc and N-acetyl cysteine being helpful against ART drug toxicity.

I'm not completely sold on the notion that ART drugs are worse than other drugs ME/CFS patients are routinely prescribed. Klonopin lands many non-ME/CFS patients in detox facilities. Antibiotics destroy gut bacteria. Drugs like Valcyte are liver-toxic. Doxepin and other tricyclics which docs used to give out regularly for ME/CFS sleep disorders have cardiac dangers. Yes, many AIDS patients went on HAART therapy because otherwise they had a death sentence. But according to Dr. Leonard Jason's ME/CFS "death" study, and the small studies on cancer in ME/CFS, the chance of dying as much as 25 years earlier from ME/CFS is a real possibility. And many AIDS patients have lived healthy lives for a long time on HAART drugs now. Maybe for a 20-year old, the risk would not be worth it. For someone with life-threatening symptoms and near-death episodes from ME/CFS, the risk seems potentially more worth it. It's not just about patience, but about the physical damage XMRV is already doing, via secondary infections, etc.

 

[Sasha]

I just want to say thanks to everyone for all the great posts that have been made so far on this thread - they're extremely informative from lots of different angles.

I'm feeling much better about the prospect of ARV treatment if it turns out to be necessary. At this stage, I don't even know if I'm XMRV+ but I imagine that many, many of us are watching and waiting and wondering about this particular issue.

 

[SickOfSickness]

I agree with Dr. Deckoff-Jones... first two paragraphs on here really make the point... and some comments below the post are very good as well.
http://treatingxmrv.blogspot.com/2010/06/response-to-chicago-tribune-article-of.html

Of course I also think it's good to debate and for everyone to get informed to make their own individual decision.

I am "only" in my early 30s and could understand how someone younger would take a more cautious approach. Though I think it has lots to do with length of illness. I have lost so many years and just want to have some kind of life.

I will have difficulty waiting versus taking ARVs if I can get them. My insurance company will likely cause further delays so I'll be forced to wait longer anyway.

 

[SOC]

I'm not completely sold on the notion that ART drugs are worse than other drugs ME/CFS patients are routinely prescribed. Klonopin lands many non-ME/CFS patients in detox facilities. Antibiotics destroy gut bacteria. Drugs like Valcyte are liver-toxic. Doxepin and other tricyclics which docs used to give out regularly for ME/CFS sleep disorders have cardiac dangers. Yes, many AIDS patients went on HAART therapy because otherwise they had a death sentence. But according to Dr. Leonard Jason's ME/CFS "death" study, and the small studies on cancer in ME/CFS, the chance of dying as much as 25 years earlier from ME/CFS is a real possibility. And many AIDS patients have lived healthy lives for a long time on HAART drugs now. Maybe for a 20-year old, the risk would not be worth it. For someone with life-threatening symptoms and near-death episodes from ME/CFS, the risk seems potentially more worth it. It's not just about patience, but about the physical damage XMRV is already doing, via secondary infections, etc.

Brilliantly said, Peggy!

 

[grant107]

Dr. Peterson said it would be reasonable for someone over 60 to take antiretrovirals. I am 73 and have been sick for 23 years. I spend my days in my recliner just watching my life pass me by. I have an appointment with an id doc next month and I plan to start the arvs as soon as possible. I am somewhat worried about the side effects but I can't wait many more years for something better to come along. I am beginning to wonder if the FDA will ever approve ampligen. I could not get in that study because of my age. I think I will die of heart disease because of my high cholesterol which keeps getting higher because of my inactivity. If I can just get a little better I would put up with side effects.

 

[BEG]

Dr. Peterson said it would be reasonable for someone over 60 to take antiretrovirals. I am 73 and have been sick for 23 years. I spend my days in my recliner just watching my life pass me by.

grant107, I can understand your choice. I hope you're up and dancing before you turn 75. BTW, what is an id doc?

 

[SickOfSickness]

@sickofcfs - Very good example and explanation of how it's tricky for younger people. Thanks for sharing. Dr Deckoff mentioned this too, that everyone can be against 'experimental' drugs until it's their own daughter. I saw the same things slip away from me and am saddened when it's younger people whose future could be altered drastically.

Some risks would always stay unknown, risks that aren't discovered yet. I just hope that I can get a clear enough picture to make an informed decision. We need to be rational about it to a large degree, not emotional, IMO.

 

[SickOfSickness]

ID doc = Infectious Disease doc

 

[BEG]

ID doc = Infectious Disease doc

Thanks sickofcfs. I'll need to write that down.

 

[Peggy]

In the early 90s, when I first got sick with CFIDS but was still staggering through strung-together part-time jobs as I couldn't get a diagnosis and thus couldn't get on disability (I was way too sick to work) I had some jobs that thrust me into the world of AIDS. I was in San Francisco. People were dying in droves. My first very brief job was at a health food store in the Castro where HIV positive men would come in, flash a discount card, and get discounts on body building and immune-enhancing supplements that helped with wasting and the rest of it. But they were still dying. Another job was assisting a blind writer who needed help with her book: her son and his wife had both died of AIDS. A later job involved doing library research for an HIV-positive psychotherapist leading support groups for people with AIDS. He wanted me to compile as much information as possible on long-term survivors of HIV/AIDS, so I did. The bottom line was, while AZT was highly controversial and some patients felt it sped death along, nothing else was working much -- "long-term survivors" told inconsistent stories, and it seemed like they were largely just lucky. It was, in this sense, much like ME/CFS in that people were trying everything under the sun, trying to "stay alive for the cure" as one AIDS saying went. And yes, some of the supplements, alternative treatments, and positive thinking might have helped, but not really, not consistently. Gay men who were older than I was talked about how they had gone through address books, x-ing out the names of their dead friends. The carnage was undeniable, and that city was palpably worn down from fighting this monster for so long.

You better believe when the HAART drugs came along, people jumped on board. One good thing about having nothing to lose is that you have everything to gain.

I think some of the fear of ART drugs has to do with fear of AIDS. Isn't it possible the stigma around these drugs, and some of the fear, has to do with this association? Honestly, if one looked at toxicity profiles, these are somewhat toxic drugs, period. They are drugs with pros and cons. It's a highly individual choice but I think that SickofCFS raises interesting points about her daughter. When I was plunging down the rabbit hole into ME/CFS, I had just been accepted into a dream graduate program at Columbia. I couldn't go. I couldn't go to any of the weddings and funerals of anyone I knew from then until now. I missed out on the last 18 years of my life. I was only 23 when I got sick. If I had been offered those drugs, a few years into it, when some of those HIV-positive people in San Francisco were given a chance to simply live, I am pretty sure I would have been even more likely to take them than now, because the life I was living had not yet become acceptable to me, I had not yet gone into any stage of acceptance and all I knew was that I had to get well, to get my life back.

Would it have been worth it to have those 18 prime years of my life, to live it up, and die at age 53? It probably still would have been worth it. And I don't think that would happen anyway. There are new AIDS drugs in development, some geared toward knocking out HIV altogether. Those drugs could be coming for ME/CFS: even if they're here in 20 years, it might be possible to have 20 good years and stay alive until then.

 

[SickOfSickness]

Great post Peggy. Thanks.

At this point in my life, I have thought that I'd rather have 10 decent years and die. Maybe less. I am only in my early 30s and have been sick since I was about 6. I don't know what it's like to live a normal life. I feel I've gotten glimmers of it. I also feel that even if my body were free of allergies, viruses, etc I would still be scarred and I still have some issues to deal with. Now despite thinking that I'd like 10 years, if I was truly given a chance to live well but only for 10 years, I don't know. Obviously I'm more likely to go for it if I thought I'd get 20 good years.

Oh, and yeah I also doubt that the drugs would cause an early death. If they do, I guess it matters to me what I'd die of. Would it be painful, drawn out... I don't know...

The point you made. Being more likely to take risks of side effects if you were younger, and didn't want your career path to slip away. This is one thing I worry about. Someone who is younger and still has a bit of that invincibility feeling. Maybe they gained wisdom from being ill, but some balance doesn't come until you're older. In their 20's men would be more likely to drink way too much, drive sports cars too fast, and jump off cliffs. I probably would have rushed into it too. I'm not a proponent of just waiting until everything is safe, but I just hope that some people don't go quite as fast into things. Giving it just another 6 months or 12 months, to let research plateau a little.

Just some things that go through my head. And I'm getting itchy, I want to get tested, I am not very patient...

 

[Daffodil]

i spend a lot of time worrying about the stigma of this disease but if you think about it, if many patients with: autism, cancer, MS, fibro, lyme, etc etc end up having an MLV-related virus, could the stigma really be that bad? i mean..thats a heck of a lot of people.

some AIDS patients who went on HAART very late in the game still died early, probably because of so much immune system damage. i wonder if long term patients will have a lot of damage, too. this virus is much less cytotoxic than HIV so maybe we wont have as much damage but surely some will be there. i wonder if stem cell treatments might help repair some of it...dr. lombardi seemed bullish on stem cell repair the last i spoke to him.

i think that these days, if you are HIV+ and start HAART early on, you can live an almost normal lifespan. (that boat has sailed for many of us, i guess)

maybe in 15 - 20 yrs they will eradicate the viruses....

sorry just thinking out loud lol

 

[SickOfSickness]

Hm, re: stigma, guess it depends on if you already have people in your life who care. Sadly it would be hard to find a partner and others if you had cancer, autism, MS, etc too. I don't think most people would be scared to just hug or be near. But if it's sexually transmitted, which is pretty likely, if it's found in blood? I think that person could become a carrier, and probably needs some genetic thing and an infectious trigger to get sick, but still, people wouldn't want to risk being a carrier. Some already are and don't know it (since they're healthy), as we know from studies. But, I guess I'd rather get diagnosed since people already have a wrong view of me, they think I have psych problems.

 

[Daffodil]

yes...i think i can get used to being alone forever. maybe it wouldnt be that bad. i will hate it when someone asks me on a date and i have to tell them i have this....ugh.