My Antiretroviral Trial

[Daffodil]

damn. now i want to add a protease inhibitor too. maybe thats why i am still not well

 

[energyoverload]

I have been a bit up and down lately. It is turning out to be bumpy ride. A few days ago I experienced an evening where I felt absolutely fantastic, infact what can only be described as euphoric. At this time I also experienced the greatest energy increase and a great feeling of strength returned to my body. Getting out of the bath tub was effortless. I have not experienced this in all of 3 years of being severely ill. However in the morning prior to this improvement, I was feeling incredibly lousy. Unfortunately this improvement has not lasted consistently. However, I still remain improved with regards to sensory overload and feelings of anxiety and distorted/ blurred vision. For me this is a very hopeful sign. Just to say I am not on any psychotropic medication except mirtazapine. I have also decided to add in Tenofovir, this may help prevent any potential drug resistance. Although I'm not sure if this med will make much difference, seeing as others have had limited results thus far. Ideally I would add raltegravir instead, but the price is prohibitive for me.

 

[Fejal]

Go back and read this thread from the start, please Fejal.

This patient is willing to experiment. It's their decision. Why are you so hard on people trying treatments other than the theory you are pushing?

(start)
My whole intention with trying the protease class of ARV's is that I could well be infected with a CFS type 1-4 MLV virus, as identified in the alter paper, for which Indinavir is shown to be effective.
(end)

Because it doesn’t make any sense. MLV as the keystone to the disease would need to be a sole pathogen. The fact that other viruses (XMRV, EBV) trigger CFS invalidates it as a unique critical factor that sustains CFS symptoms. You can’t tell me there is a way to discriminate symptomatically anything specific between MLV and XMRV so therefore neither of the viruses are doing anything unique. They are sharing a common pathogenesis which i believe is a period of low immunity that allows coinfections to take hold.

Post-infection XMRV I was recovering from the fatigue until I picked up two coinfections: epstein-barr virus and bartonella. This is another reason I don't buy the idea that viruses are the key to the disorder.

The low copy number is precisely why an active protease inhibitor (one that works on XMRV and MLVs) is necessary. It can very well be that most of the damage is caused by the integrated DNA continually spewing out viral proteins.

You need to understand that "antivirals" covers the whole lifecycle of a retrovirus, in theory. In practice, it has leaned toward preventing reverse transcription and host genome integration because HIV is a fast replicator. In theory, any drug that prevents damage from the retrovirus by working directly on the retrovirus is considered an antiviral. Therefore your outright dismissal of antivirals for gammaretroviruses makes no sense. We're gonna have to tweak the protocol a bunch of times before we get it right, so I applaud anyone who's brave enough to take the plunge as long as it's well thought through

By knocking down the viral load the immune system is “getting it right”. I have a hard time supporting a treatment that doesn’t make sense logically and justify the resource outlays. But have fun on your little adventure.

 

[ukxmrv]

This "little adventure" Fejal.

I don't know what your level of functioning is or how important it is to you that we find a cure? - but my life is at stake here, I'm not getting any younger and this is a very serious topic indeed.

I am very grateful for people trying to new treatments and reporting back here. Would like to make it a supportive atmosphere without encouraging people to take dangerous risks.

This is not "fun" for anyone.

 

[Daffodil]

fejal....if you read the last presentation on dr. deckoff-jones' blog, you would know that decrease in XMRV-expressing cancer cells occured after ARV treatment. the patient had CLL and CFS.

 

[leela]

I come here to hear all sorts of varying opinions, experiences, and ideas from a community of people I have one very important thing in common with.
This gives me a much-needed sense of support and community. While I don't think anyone on this thread has yet grossly violated any of the Forum Rules,
let me repost some of them here, just as a reminder of how important it is that we all feel safe in this environment:

RULES:

1. While we honor passionate and informed discussion we will not tolerate rudeness, insulting posts, personal attacks or purposeless inflammatory posts. Personal attacks include:
Attacking someone's character
Referring to members in a pejorative way
Referring to a treatment that works for someone in a pejorative way
Sarcasm intended to belittle someone's beliefs, treatment preferences, etc.
Questioning someone's medical status.
Critiques of individuals or organizations should be done in the spirit of constructive discourse; simply dumping on a person or organization is not conducive to the kind of conversation we strive for.

 

[Daffodil]

fejal...how could you possibly know when you contracted XMRV? there was no test then.

i find this amusing because in less than a year, you will be crying and begging your doctor for ARV's like everyone else.

 

[mojoey]

Post-infection XMRV I was recovering from the fatigue until I picked up two coinfections: epstein-barr virus and bartonella. This is another reason I don't buy the idea that viruses are the key to the disorder.

I almost took you seriously before you said that. Like Daffodil, I am envious of your ability to detect XMRV before the test came out. Tell us how so we can save hundreds of dollars!

I once heard a similarly talented AIDS patient say "Post infection HIV I was recovering from death until I picked up two coinfections, and soon I'll test positive for HIV!"

 

[Fejal]

This "little adventure" Fejal.

I don't know what your level of functioning is or how important it is to you that we find a cure? - but my life is at stake here, I'm not getting any younger and this is a very serious topic indeed.

I am very grateful for people trying to new treatments and reporting back here. Would like to make it a supportive atmosphere without encouraging people to take dangerous risks.

This is not "fun" for anyone.

UK I have CFS too. But mine appears to be coming from a bacterial coinfection from bartinella spp. which was obtained from flea bites off a stray cat that followed XMRV infection. I do take your case seriously but putting your hopes on something that doesn’t look to have a viable mechanism of pathogenesis to me is just cruel, expensive and setting yourself for a fall.

Taking an antiviral with their serious side effects without a good chance of benefit is taking a dangerous risk that I can’t justify.

fejal....if you read the last presentation on dr. deckoff-jones' blog, you would know that decrease in XMRV-expressing cancer cells occured after ARV treatment. the patient had CLL and CFS.

That doesn’t prove anything. Show me the decrease is correlated with better outcome markers: decreased fatigue, better cognitive functioning , etc.

Sarcasm intended to belittle someone's beliefs, treatment preferences, etc.
Questioning someone's medical status.
Critiques of individuals or organizations should be done in the spirit of constructive discourse; simply dumping on a person or organization is not conducive to the kind of conversation we strive for.

I did it to make a point not just for sarcasm. Given the lack of basis for the treatment it literally is entertainment and not a treatment I expect to work.

fejal...how could you possibly know when you contracted XMRV? there was no test then.

i find this amusing because in less than a year, you will be crying and begging your doctor for ARV's like everyone else.

I was exposed to XMRV via needlestick, know the exact date of the exposure and have positive bloodwork for low levels of XMRV to prove it. A confirmatory XMRV positive from the patient whose blood I was exposed to may or may not be forthcoming but I know exactly when symptoms hit. I also know the exact date of my mononucleosis exposure and an approximate date for when I was exposed to the bartinella spp (awaiting confirmatory bloodwork).

I almost took you seriously before you said that. Like Daffodil, I am envious of your ability to detect XMRV before the test came out. Tell us how so we can save hundreds of dollars!

I once heard a similarly talented AIDS patient say "Post infection HIV I was recovering from death until I picked up two coinfections, and soon I'll test positive for HIV!"

Lab tests show I have completely recovered from EBV despite the low levels of XMRV in my system. So poo on your belief that it isn’t possible. We’ll see if I regain my ability to have a high fever after I clear the bartinella. I suspect that I will and that will be the proof that XMRV is irrelevant.

 

[katieann]

Sustiva is not a PI and would not be indicated at all. It has some significant psychiatric adverse effects and should be avoided. It appears to have essentially no activity against X in vitro.

Jamie Deckoff-Jones MD

ACK!! Thanks for the info!

 

[katieann]

hi katie....can i ask where you heard Sustiva would be affective against XMRV? i cannot find this info anywhere.

also, i think you can get RAL free from the drug co. if you are eligible

best of luck! fingers crosssed

xoxoxo
sue

hi Sue. I found it in a list of anti-retrovirals here: http://www.aidsmeds.com/list.shtml

But when I go there now, I do not know what my brain was doing that day, as your right, it isnt a PI.

Well, the research continues.

I have chked out RAl, merck and everything thing on needymeds and another I cannot recall the name (X something). Most are:

1) You are not eligible if you are on medicare and/or
2) You have to be 500% below the poverty level to be eligible.

I have also looked at co-pay assiatnce as well. It's the same thing. If your on medicare, your not eligible.

 

[shannah]

Lab tests show I have completely recovered from EBV despite the low levels of XMRV in my system. So poo on your belief that it isn’t possible. We’ll see if I regain my ability to have a high fever after I clear the bartinella. I suspect that I will and that will be the proof that XMRV is irrelevant.

Interesting history Fejal! Good on you for narrowing down the sequence of events.

One observation that I have is that perhaps the EBV & Bartonella would not have been a problem for your system to clear had you not had the XMRV playing some underlying part. Perhaps the next infection you get, you may not be as fortunate in recovery. But let's not go there!

 

[Fejal]

Interesting history Fejal! Good on you for narrowing down the sequence of events.

One observation that I have is that perhaps the EBV & Bartonella would not have been a problem for your system to clear had you not had the XMRV playing some underlying part. Perhaps the next infection you get, you may not be as fortunate in recovery. But let's not go there!

Thanks Shannah. I totally agree with you that XMRV looks like it was the pathogen that made me more susceptible to the other two infections when the viral count was higher. However I am encouraged that my body seems to be slowly improving on the BALI protocol. My photosensitivity is greatly reduced, inflammation is decreasing and I was able to lower the olmesartan (benecar) dosing from q6h to q8h after seven months of treatment (3x/day). Prior to this there was too much inflammation to lower it.

It will be interesting to see how I do once the bartinella spp. is cleared since it is known that this L-form directly suppresses three critical immune system pathways. My symptoms are a dead on match to reported bartinella spp. cases however the L-form infestation is probably giving me the most severe presentation of the parasite.

 

[ukxmrv]

Fejal, how do you know that you have low levels of XMRV when the tests are yes/no?

 

[Fejal]

My physician spoke to the lab and they had a really hard time finding it due to the low count. It was missed in the first run and reported as negative. They had to quality control a second run to pick it up.

 

[Fejal]

This is daft. Did I not say I have a positive blood test for XMRV?

 

[Alesh]

Fejal, could it be that one of your neuropsychiatric involvements consists in aggression increase?

 

[illsince1977]

Fejal, could it be that one of your neuropsychiatric involvements consists in aggression increase?

You framed that so compassionately, Alesh. And you may be right.



Fejal - Your first post on this thread struck me as VERY angry. I am constantly reading provacative, angry posts from you often followed by slightly toned down posts. We are all suffering from this illness. Many of us are extremely emotionally affected by this illness yet we have learned the importance of treating others, either in life or on this forum, respectfully and gently. They say you can catch more flies with honey than with vinegar!

I, for one, am preparing for a doctor's appointment at the end of the month during which I may be forced to make the case for ARVs. I'm looking for and am so grateful for the information exchanged here. I'm not sure I'll have the time, energy, concentration and brainpower to gather all the information I need before then.

I do not appreciate the insertion of the same old negative saw I have been hearing from you (and, yes, I've given you a fair listen) since you joined the forum, in the midst of such a vital discussion. Please have pity on those of us who are attempting to discuss the topics at hand and have trouble focusing.

I plead with you to rein in your urge to tell us that you think our treatments and disease model are on the wrong track in the future, and let us discuss the topic at hand.

 

[Fejal]

FYI I try to avoid responding to weak ad hominem comments.

I am discussing the topic hand. The problem is that you aren't willing to hear points of view that contradict your beliefs.

Claims that the XMRV virus has been shown to be the cause of M.E. or that this test is useful in diagnosing M.E. are false, misleading and unethical. Research done on patients with a wide variety of diseases involving fatigue and/or immune problems, and discussed under the "CFS" banner, usually has nothing to do with M.E., and the much-hyped and very slickly promoted XMRV research is, based on all of the evidence produced thus far, just another such example

-HFME XMRV discussion paper: http://www.hfme.org/xmrvcfsandme.htm
http://www.hfme.org/xmrvpressrelease.htm

 

[Daffodil]

well...all i know is....i am on ARV's and slowly (very very very slowly) improving. i no longer consider my life a living hell.