Discussion in 'XMRV Testing, Treatment and Transmission' started by natasa778, Feb 25, 2010.
This is a really good cautionary tale for people considering AZT or other drugs for XMRV. Is there anyone who knows how to embed the video into a post. It would be great to let everyone watch it.
I don't think embedding for blip.tv works with the site software.
Thanks for the find, natasa778.
I hope Doc Mikovits and any others working on antiretrovirals for XMRV in CFS patients are aware of these findings (though I believe he said they haven't been published yet). He noted that this is something that needs to be addressed by the pharmaceutical companies. It was also disturbing to me that they found all tested antiretrovirals to be neurotoxic (in vitro). Even "mild" neurocognitive dysfunction added to the neurocognitive problems CFS patients already have would be too much for most of us!
Yes Doc but he also pointed out that HIV caused neurocognative impairment, something I hadn't paid any attention to, and that removing the HIV from the brain improved the 'thinking ability'. So theoretically if we took antiretrovirals we would gain say 80% and maybe lose 10% for a 70% net gain. (that's all numbers from my butt so don't take it seriously)
Interesting from reading many of the 'recovery' stories over the years I've never heard anyone say they regained 100% of cognitive function. Wonder what's up with that?
Dr. Yes, I believe the goal of people who have ME/CFS and would take antiretrovirals would be that these drugs would make them feel better. And if they would - and assuming that it would be because XMRV causes ME/CFS and those drugs would fight XMRV, than I think there is a good chance it would also improve their thinking. On the other hand, if these studies are correct, it might also decrease their mental ability and if focus on that mental ability alone (without the rest of the symptoms of the disease, which are ofcurse crucial), than the question would be if the drug does more good than harm or the opposite.
Nevertheless, I think that this study should be taken very seriousley (and I'm arfraid that it won't). I hope the drug companys would really make an affort to create antiretrovirals - against HIV, HTLV and XMRV - that would not harm the patient's brain (or at least, for the beggining, would harm their brian much less than it does now). But I don't know if that would be good for the drug companies finincialy, and therfore I'm arfraid that it's possible they would not care.
You're right about HIV and "AIDS dementia", George. But in our case, the key would be whether our neurocognitve probs are caused by XMRV in the brain or, instead, by a secondary mechanism, such as hypoperfusion, mito dysfunction, microglial inflammation/toxicity (if unrelated to XMRV), or co-infection with some other pathogen. If it's due to any of those but not directly (or at all) to the action of XMRV in the brain, then I would guess that the neurotoxicity of antiretrovirals that cross the BBB would be additive, overall. In other words, it depends on the extent of XMRV's role in our actual pathology.
Trouble is, antiretroviral trials and treatments will begin before this question can be answered. So I hope the issue of neurotoxicity is carefully addressed by the drug companies beforehand, without the assumption that XMRV is directly linked to ME/CFS cognitive dysfunction.
ETA - You're right omerbasket, it's an issue of cost vs. benefit... with an emphasis also on short term tolerability. And it may be largely up to us to push drug companies to take this seriously (not too many people - other than us and a few specialists - are aware of the degree of potential severity of ME/CFS neurological effects).
Like George said, at this point we must approach antiretroviral treatment with appropriate caution, given these findings.
Very interesting video. Thanks natasa.
I wonder if Shoemaker's info would help. He has studied neurotoxins, has a VCS test, and treatment protocols. I took cholestyramine for awhile, and it was the first thing that helped me with cognitive function. I'd been wondering about trying it again.
Shoemaker works a lot with mold, lyme and CFS. I don't know if he is involved with anything like antiretrovirals and neurotoxicity.
I don't know about 100%, but I recall reading that those on Valcyte recovered most if not all of their pre-morbid cognitive function.
Of course, Valcyte is an antiviral, not an antiretroviral.
Valcyte also helped some of my cognitive function. I'm still far, far from 100% but I only took it for 7 months.
There are a number of retrovirologists that claim that AZT causes the same symptom complex as aids and they attribute more harm to the treatment
Interesting...as after nearly 4 years on high dose Acyclovir (QUITE high!) - the only very noticeable improvement I've experienced IS with Memory/Cognitive function!
STILL have chronic shingles, PEM, fatique, OI, bad tummy and just LOADS of pain...but I can remember I have all these rotten symptoms AND think about them VERY clearly! That's good enough for me, for the time being! (Again...mine is a ANTI-viral)
(here's a little footnote...at the start of my ANTIviral treatment (and for about the first year into it) my Liver Enzymes were wonky (fluctuating up and down...but moving increasingly UP and toward the "unsafe" zone). The last labs I had done about 2 weeks ago showed a MARKED improvement!...in fact, they were perfectly normal! But during the same time frame my CRP#'s have crept steadily up and are now too high - 6.6. Wonder what would account for that? sigh.....can't wait to add in Tagamet to the mix!)
check out this article in NY magazine.
It talks about how HIV patients are showing signs of accelerated aging, and develping a host of problems usually seen in geriatric patients in middle age. It's not clear if this is down to the drugs or the illness or both.
Here's a quote.
One large-scale multi-city study released its latest findings this summer that over half of the HIV-positive population is suffering some form of cognitive impairment. Doctors are also reporting a constellation of ailments in middle-aged patients that are more typically seen at geriatric practices, in patients 80 and older. They range from bone loss to organ failure to arthritis. Making matters worse, HIV patients are registering higher rates of insulin resistance and cholesterol imbalances, and they suffer elevated rates of melanoma and kidney cancers and seven times the rate of other non-HIV-related cancers.
Read more: Why a Number of HIV Patients Are Aging Faster -- New York Magazine http://nymag.com/health/features/61740/#ixzz0ga5iNNTP
There is an HIV Aging group on Facebook.
In children HIV causes autism. It is called Peadiatric Neuroaids, but the symptoms match every single thing on autism checklist down to the tiniest 't'. It affects 30-50% HIV positive kids, interestingly enough UNLESS they are on antiretrovirals. HAART etc keep symptoms at bay, but not in every case.
That was was made me dig for retroviral cause of idiopathic autism months before xmrv news came out. If is not xmrv there is something very similar working in same ways (minus lethality of HIV). Could be 'just' a sneaky herpesvirus in some cases, but acting through same mechanisms as HIV.
Every single biomedical abnormality found in autism (apart from extreme/lethal immune dysfunction) is found in children who are HIV positive. Quite surreal.
linkon HIV and autism article, with references
I didn't go through the link but I wanted to put out my speculations. A couple things make me think the neurocognitive dysfunction in CFS may not be directly mediated by XMRV but by other factors like herpes viruses, immune activation, and blood flow to the brain.
1) Early of course and we'll need to see full results but no mention of XMRV in the brains of those monkeys
2) Cockshel 2010 review of cognitive function in CFS notes probs with attention, speed and memory but reasoning, verbalization, global function intact
3) I know several people personally who literally could not read due to attention probs prior to antivirals and afterwards, though many remained tired, were able to read novels, balance checkbook, etc. (herpes effect?)
Like all medications, we need to be careful about side effects but it's always about risk and benefits. Whenever I feel down about this being a retrovirus, I remember the people I knew who died from HIV/AIDs and the years afterwards when it was much different.
Hope123....Yep! That's me! (for several years prior to Antivirals) Couldn't read (former voracious reader...would read the same page or two over and over again with little comprehension)...balance checkbook (actually couldn't even WRITE out a check...let alone balance my account!), couldn't figure out how to follow a "pattern" or instructions for tasks (stuff like a knitting pattern, or a recipe...these were like reading another language! very frustrating).
Couldn't problem solve or multi-task, couldn't sort my mail...my list goes on and on. It felt like a combo of attention span/memory/cognitive....could not seem to "grasp" what people were telling me.
About 1.5 yrs. into the Acyclovir, it felt like a veil lifted. AND I also have Chronic Enteroviruses...chronic Shingles!
I'd kill to have a fMRI (wanted a SPECT...but I believe the functional MRI may be better)...COVERED/allowed by my Insurance Co.! I pleaded with my Neurologist to request one...no way. He'll give me all the "regular" MRI's I want...they just show a few white spots...I want to see decreased blood-flow!
What I DO notice now, is that during PEM or a crash, I have occaisional moments when I feel as though a part of my brain has been erased...I draw a complete and total BLANK, for a few seconds. It always takes me by surprise!
And I still experience some trouble with word finding/word substitution/spelling. I force myself to work on crossword puzzles as much as I can (but only in pencil, now!)...and I find Jig-saw puzzles work my brain, as well.
When it came time to dismantle my artificial Christmas tree...I stared at it and announced to my family "Looks like it's time to take that refrigerator apart!" (the worst of it was it APPEARED as a refrigerator...for a split second!)
My favorite part of the improvement is that I can finally hold my own again, in a friendly argument with my husband!
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