Antiretroviral Trial

[sphynx on roundabouts]

i am sorry to hear that many of you are in the same boat as i am. really feels like its sinking fast lol

If the boat feels like it's sinking it's probably because there are so many of us in it! I'm happy to have your company in the boat as I'm sure are others who are unable to post - we can all keep each other going.

I really hope that your symptoms will at least calm down a little bit sooner rather than later.

 

[Daffodil]

thanks sphynx and charles. dont worry about harping!

dr. lombardi says that the ARV's shouldnt affect the serology tests.

sue
xoxo

 

[Rrrr]

sue, have you seen this: http://www.mecfsforums.com/index.php/topic,1721.0.html

dangers of ralt.

xxoo
rrrr

 

[Daffodil]

thanks, Rrrr. i read that article before i began taking the drug. i understand it triggered autoimmune disease in genetically susceptible mice but not in other mice. i talked to a few doctors and decided to take the drug anyway.

love
sue
xoxo

 

[leaves]

Hey Sue,

Are you doing a bit better today? still taking the Enhansa?
Hugs

 

[Daffodil]

hi leaves thanks for asking. i am still not well. i keep thinking i will wake up better but i never do. i also continue to have night sweats. i really dont think the meds are working at all.

how are you doing?

i stopped the curcumin because i didnt want it to affect my cytokines since i am getting the cytokines tests in 3 weeks...

sue
xoxo

 

[leaves]

oooooh too bad you had to stop the enhansa I understand tho, hope you can start again in 3 weeks. I am doing ok, energy level is quite bad lately (altho it improved after stopping LDN), but the enhansa really does a great job for me brain inflammation wise. i can concentrate again I started off slowly (1 cap) and I am now on 2 caps, and slowly building to 4. I also started oxymatrine, which has quite a lot of side effects for me.
On night sweats; did you try not drinking coffee or eating nightshades, gluten an caseine? NIght sweats often signal detox problem, and avoiding those foods may support your system.

hugs!

 

[Daffodil]

i read that gammaretroviruses reproduce mainly through mitosis of the cell, unlike HIV, and only infect dividing cells. they have an affinity for rapidly dividng cells. so i just dont see how antiretrovirals are going to work for this. many have said this before but i really agree with this now. it makes complete sense in regards to jimbob's and my case, because we improved a little and then stopped. i cannot explain why some are improving on the ARV's, though.

i probably have the virus sitting in every cell by now!

 

[Daffodil]

here is an email i sent to a researcher:

I realize little is known about XMRV/MLV so far but would you think, once antiretroviral treatment protocols are established, that cognitive impairment might continue to be an issue as it is with so many HIV cases and some HTLV-1 cases?

here is his response:

Really hard to say. There are major differences between the viruses -- HIV and HTLV can infect many more cells in the brain that XMRV cannot (all nondividing cells, for example), and are often cytopathic, where XMRV is not. Many of the antiviral drugs do get into the brain (though some do not). So all told, the story might be very different (and likely more favorable for XMRV disease). But how this will all play out for cognition is totally beyond our ability to guess. We'll just have to wait and see.

 

[energyoverload]

My Indinavir and AZT should be arriving anytime soon. I can't wait to start and keep you all posted of any news.

Sue...I really don't get the mitosis replication thingie anymore - is it right that once XMRV/MLV'(s) get into the cell using reverse transcriptase they become incorporated into our dna and thus these retrovirus genes will be replicated each and every time the cell divides by mitosis. Once integration of retroviral RNA into the cell has occured how can an antiretroviral help us? I thought this would only prevent infection... The genes will already be in the cell's there, now immune to all ARV targets. As messengerRNA will translate the Retrovirus genes (from the DNA) into RNA which is made into proteins at the ribosomes... At which stage these malformed proteins do not function normally and consequent disease occurs.

Can someone set the record straight with this?

 

[Daffodil]

energyoverload..i am just too foggy to figure even the simplest things out...at which stage with the ARV's get the virus? i cant even think at all

glad you are going to try the meds....has anyone suggested indinavir other than that 1999 article?

oh i hope my next batch of bloodwork indicates something good so i can just stay on the meds and wait it out. wonder when that paper is coming out regarding markers

 

[Hope123]

My Indinavir and AZT should be arriving anytime soon. I can't wait to start and keep you all posted of any news.

Sue...I really don't get the mitosis replication thingie anymore - is it right that once XMRV/MLV'(s) get into the cell using reverse transcriptase they become incorporated into our dna and thus these retrovirus genes will be replicated each and every time the cell divides by mitosis. Once integration of retroviral RNA into the cell has occured how can an antiretroviral help us? I thought this would only prevent infection... The genes will already be in the cell's there, now immune to all ARV targets. As messengerRNA will translate the Retrovirus genes (from the DNA) into RNA which is made into proteins at the ribosomes... At which stage these malformed proteins do not function normally and consequent disease occurs.

Can someone set the record straight with this?

I don't know enough about HIV to say for certain but it makes biological sense to me re: mitosis. Also, there is cell-associated spread apart from mitosis -- http://www.springerlink.com/content/u521468764r87417/

Re: the drugs. Currently, Raltegravir, as an integrase inhibitor, prevents integration of HIV into our DNA but once it is there, there is no drug that excises it out. A quick Google turned up this article which does talk about on-going experiments to find a drug which might be able to excise integrated retroviruses:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2908407/?tool=pubmed

 

[energyoverload]

Hope...thanks for that info that is very interesting. The ARV's don't necessarily sound too great a prospect for present sufferers :S Arggh we won't know until we try them I guess...!

Sue...I too am getting so desperate. I've now gotten hold of some selegiline, which by itself is not that powerful. But I've added in tyrosine which is converted to levodopa and then dopamine. This seems to give me a bit more energy. I am trying to get hold of some actual levodopa, Vitamin B6 (p5p) aswell to try and attack this fatigue. This is the combination they routinely use in Parkinson's Disease. Have you tried any meds with aim of boosting dopamine? I'm now too weak to get out of the bath I've just had enough of this downhill spiral. I use 0.5mg Klonopin but this isn't having much effect any longer.

I've just sent off the form to have my blood retested with the antibody...i'm sure Dr Jamie Deckoff-Jones is improving so rapidly because for her it is all XMRV. I really think we could be infected with other MLV variants and not X. You never know the addition of Indinavir might just hit the nail on the head?

 

[energyoverload]

Sorry my fog brain forgot your question... I haven't seen any other papers suggesting efficacy of Indinavir against MLV's other than the one I mentioned earlier. Do you think cytokine profiles are worth testing to monitor ARV treatment response? Supposedly these are all way out of wack, some are up by around ten fold, based on that data that was posted on the forum recently (can't remember where though).

 

[Daffodil]

hi energy....i am just reluctant to try things as a bandaid for my symptoms..its never worked for me in the past...but i am really glad they help you. ativan does help when the agony gets too much.

dr. mikovits and dr. lombardi talk about cytokine panels so maybe they will tell us something....i just dont know. i heard peterson used to test cytokines frequently to see if treatments were working, because clinical improvements could take very long for some people i guess..

i am just not sure why dr. deckoff-jones is improving so quickly. i thought that people with a lot of brain fog dont do as well....but thats very old data. dr. deckoff-jones doesnt have any brain fog. i am really glad the ARV's are helping some people.

you are right...and more than one person has suggested that i have another virus...perhaps related but not XMRV. but someone at VIP told me treatment would be the same for the other viruses, too.

i can just see me coming up negative again. what will i do then? i am already hanging on by a fraying thread!

 

[jenbooks]

Sue, did you see my thread on who's telling the truth? We can't entirely and sometimes even partially trust Internet reports. That's why Coffin is right we need to find ways to measure viral load before starting clinical trials.

I believe Dr. D-J and her daughter are improving. But note that she did have brain fog. At least what I call brain fog. Don't ask me for details. She doesn't now. In addition they did have tickborne illness and did treat aggressively with IV abx and with anti babesial drugs for two years. That's a lot of treatment. There's a decent chance they treated virulent coinfections successfully and there's a possibility that's relevant in their cases. After discontinuing the drugs and some other meds they began to improve somewhat. My personal read on that is yes the drugs treated virulent tick infections but were toxic. Finally off the drugs and freed from the toxic effects they saw improvement.

Then they treated their remaining bug, mlv(s). This is my personal and perhaps incorrect read of their situation. But I take reports with skepticism. People tend to highlight improvement and hide problems as per my post on who's telling the truth. I'd like to see a report from the doctor. One time I wrote about sound healing and got a first person story froma woman suffering severe disabling rheumatoid arthritis. She went to Sondra Ingerman's sound healing class and lay on s mat while everybody went outside and toned for her. Twenty minutes later she woke up dead or so she believed as she had no more pain. After that the occasional Tylenol rather than narcotics sufficed.

I did confirm that story with her nurse practitioner who said the improvement had lasted a year already.

Take internet and email reports with 10,000 grains of salt.

Also, Sue, can you get a lounge chair (Lowe's has great ones with sun roof things) and rest outside during the day and evening? Your house may have toxins. You would be surprised. The house I'm staying in has pesticide issues and I ge stinging nerve pains and muscle knots that disappear when I tent camp. It's a great house and I don't smell the pesticides but it was treated and were I not tuned into my body I'd just think I was mysteriously sick.

 

[jenbooks]

Sue, did you see my thread on who's telling the truth? We can't entirely and sometimes even partially trust Internet reports. That's why Coffin is right we need to find ways to measure viral load before starting clinical trials.

I believe Dr. D-J and her daughter are improving. But note that she did have brain fog. At least what I call brain fog. Don't ask me for details. She doesn't now. In addition they did have tickborne illness and did treat aggressively with IV abx and with anti babesial drugs for two years. That's a lot of treatment. There's a decent chance they treated virulent coinfections successfully and there's a possibility that's relevant in their cases. After discontinuing the drugs and some other meds they began to improve somewhat. My personal read on that is yes the drugs treated virulent tick infections but were toxic. Finally off the drugs and freed from the toxic effects they saw improvement.

Then they treated their remaining bug, mlv(s). This is my personal and perhaps incorrect read of their situation. But I take reports with skepticism. People tend to highlight improvement and hide problems as per my post on who's telling the truth. I'd like to see a report from the doctor. One time I wrote about sound healing and got a first person story froma woman suffering severe disabling rheumatoid arthritis. She went to Sondra Ingerman's sound healing class and lay on s mat while everybody went outside and toned for her. Twenty minutes later she woke up dead or so she believed as she had no more pain. After that the occasional Tylenol rather than narcotics sufficed.

I did confirm that story with her nurse practitioner who said the improvement had lasted a year already.

Take internet and email reports with 10,000 grains of salt.

Also, Sue, can you get a lounge chair (Lowe's has great ones with sun roof things) and rest outside during the day and evening? Your house may have toxins. You would be surprised. The house I'm staying in has pesticide issues and I ge stinging nerve pains and muscle knots that disappear when I tent camp. It's a great house and I don't smell the pesticides but it was treated and were I not tuned into my body I'd just think I was mysteriously sick.

 

[Daffodil]

thanks a lot jen...

unfortunately, i live in a condo and do not have a balcony but i have been trying to get outside more lately.

i communicated with dr. deckoff-jones by email so i know she is doing very well and was even able to attend the WPI opening in reno!

i just dont feel like anything can be worse than this so i am trying anything that has a chance....

sue
xoxox

 

[jenbooks]

Good you are getting outside.

She was my hbot doc for two months. All I am saying us she was indeed cognitively affected tho she seems quite clear now. And that she and Ali did aggressive IV abx treatment which you cannot rule out as part of their success now with ARVs. And that they do other treatments as well including saline IV when necessary, the Rx form of methylfolate, a smart drug called selegeline, bioidentical hormones (I do not know if Ali is on those) and for Dr. DJ various blood pressure meds.

It is in no way a simple as, "I got sick, took ARVs and am getting well." That's what I mean by who tells the truth? People selectively filter their stories.

 

[dannybex]

Hey Jen -- thanks for bringing up contributing factors again, especially pesticides, which are almost never discussed here.

I was wondering...if you couldn't smell them, how were you able to determine that the house had pesticide issues?

The house I live in has had wasp issues and my landlord sprayed parts of the outside walls a couple years ago...