Antiretroviral Trial

Daffodil

Senior Member
Messages
5,894
thanks, everyone. things are just very bad right now. i started valcyte a few days ago. my doc gave me a month's rx..no idea if he will agree to more or if my liver enzymes will hold up in light of my taking AZT, etc.

i really want cidofovir but it seems that the only way anyone will consider prescribing it here, is if i have proof of HHV6 or CMV in my spinal fluid, and i cannot get a spinal tap here. i surely dont have the money to go to the US and pay for multiple spinal taps and testing.

sushi......i am certainly keeping GcMAF in back of my mind, believe me. it is another little thread of hope. i am so glad you are responding to it.

so many times, i thought i was getting better, only to crash again....so i just dont hope anymore, and thats a bad place to be.

the swelling in my brainstem area has gotten insane. i really dont know why there isn't someone on this earth who could just tell me whats living up there.

WPI.....please hurry! :(
 

undcvr

Senior Member
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822
Location
NYC
There is no need to prove that you must have HHV6 and CMV in your spinal fluid to be on Vistide. Several ppl on PR have been on Vistide, all they had were a combination of 2 of ebv/cmv/hhv6. Look up cloud on PR here, he went on Vistide and recovered even though he is XMRV+
 

Daffodil

Senior Member
Messages
5,894
und.....i have to prove it to be given vistide here. i was going to be on vistide with lerner but i have to pay of out pocket and coudnt afford it.

chimerix has provided cmx001 (oral vistide) to several people with these sorts of infections but no doctor here will help me get that either.

really, its a miracle that i am getting the meds that i am. i would be surprised if anyone else in ontario is getting them.
 

heapsreal

iherb 10% discount code OPA989,
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10,225
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see how u go sue, u always started of crappy on valcyte and then slowly improved, just tell the doc your feeling better when u see him next and get another prescription. I hope u start improving soon. Just keep taking some supps to support your liver function.

cheers!!!
 

Charles555nc

Senior Member
Messages
573
In regards to GcMAF, MAF means macrophage activating factor. Reishi and maitake mushrooms are also listed as able to activate macrophages and other blood components. I did a dogpile search and found alot of websites listing "Activates macrophages" in the description of those two mushrooms. Maybe "you people" (joke) could look it up and see if you find something more official.

Edit: You guys/girls should really try the methyl folate (found in many vitamin stores) its good for your dna's resistance to viruses, and is great for nerve function.
 

Daffodil

Senior Member
Messages
5,894
thanks charles. my doc refused deplin but maybe i will check out methyl folate. i once bought a bottle of reishi for like $200 and i think ended up throwing it out cuz it expired.

at that recent seminar, natelson(?) was talking about he couldnt find xmrv in spinal fluid but dr. mikovits said something about how it can live in brain tissue and not spinal fluid (i think).

it just seems so hopeless for some of us who cannot wait for new drugs that can get to the brian in sufficient quantities...... as far as i remember, everyone who has improved on the ARV's didnt really have brain fog.

thanks for the peptalk heap..appreciate it.

sorry for being a whine-bag lately lol
 

undcvr

Senior Member
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Location
NYC
I agree with Charles in general I find the active folates both methyl and formyl more effective than methylation therapy (the B12s).
Deplin IS methyl folate
 

Daffodil

Senior Member
Messages
5,894
i have been on the HIV meds + valcyte now for over a week i think. nothing is differnt...still have horrible feeling in head. not sure if its worse or not. too foggy to remember much. am taking the loading dose.

will take couple of weeks for new VIP bloodwork results....will report here.
 

Charles555nc

Senior Member
Messages
573
Undcvr are you recommending both types of folates at the same time? Would u recommend NAC/selenium at the same time?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Thinking of you Sue and hoping things improve soon.
Only a few weeks to the Invest in ME conference and hope to get some good news there.
 

Daffodil

Senior Member
Messages
5,894
hi all. i got my cytokine results back today and they are very confusing. what was highly elevated before is normal now, and what was normal before is highly elevated now. i dont understand what this could mean. if anyone out there could help, i would really appreciate it. here are the results:

http://www.filejumbo.com/Download/1E38F501C5E4BB20
 

Daffodil

Senior Member
Messages
5,894
i think whats happening is, i have a co-infection. HHV6 or something. maybe now my system is able to respond to the infection so thats why some other inflammatory markers have risen?? ugh. i wish i could somehow speak to dr. peterson. how can i make sense of this stuff?

i have a little energy on some days now, and i dont feel too sick from the neck down. but, of course, things are still horrible from the neck up, which is the only thing i really care about!

in back of my neck..in back of my head...i feel this churning burning and swelling...like its "full". something is living in there!!

how interesting that the MIP1a and MIP1b are normal now....thats the macrophage inflammatory markers

sorry for my weird typing and mood swings on this board..i am so foggy and everything is confusing, even my feelings
 

ukxmrv

Senior Member
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4,413
Location
London
No apologies needed Daffodil. There are a lot of us in the same boat. Trying new things, trying to work out with little help what could be the right pieces of the puzzle.

Sounds terrible, the neck and head symtoms you describe. No wonder you feel foggy
 

Daffodil

Senior Member
Messages
5,894
thanks, uk. i was reading that HIV infection downregulates interferon gamma production..so maybe now that the XMRV is suppressed, gamma interferon production can resume?

i think interferon gamma is produced by the NK cells....
 

omerbasket

Senior Member
Messages
510
i think whats happening is, i have a co-infection. HHV6 or something. maybe now my system is able to respond to the infection so thats why some other inflammatory markers have risen?? ugh. i wish i could somehow speak to dr. peterson. how can i make sense of this stuff?

i have a little energy on some days now, and i dont feel too sick from the neck down. but, of course, things are still horrible from the neck up, which is the only thing i really care about!

in back of my neck..in back of my head...i feel this churning burning and swelling...like its "full". something is living in there!!

how interesting that the MIP1a and MIP1b are normal now....thats the macrophage inflammatory markers

sorry for my weird typing and mood swings on this board..i am so foggy and everything is confusing, even my feelings
Hi Sue,
Are you sure you have the units of the numbers (for example, mililiters Vs. liters) correct? I mean - are they using the same units?
And, you wrote that the normal range for MIP1 a is "169" and for MIP1 B is "304". I guess you meant something like "<169" and "<304", but can you make it clearer for us?
I guess that it might be possible that if you will upload scans of your original test result papers we would understand it better (be sure to not scan your personal details, unless it doesn't bother you).

Anyway, your results are, indeed, confusing - at least to me. But there are a couple of intersting things: We recently read an abstract of a work done by Dr. Silverman and his colleagues, were they infected a prostate cancer cell line with XMRV and looked what happened to the cytokines and chemokines there - and they said that they biggest change was in IL-8 - it was increased to a level 6-times higher than what it was before, and that's just when they looked at it for 48 hours (imagine what it might cause when it's there for years). When you were "just" 5 months into your ARV treatment your IL-8 levels were 1930.3. 7 months later, a ytear into the ARV treatment, there was a 14.65-fold reduction in it's levels, and the levels were 131.7. Still not normal (normal is <14) but much better.
Your MIP1-a and MIP1-b, which were very high, were hughely decreased and their levels are now normal. Notice that MIP1-a, MIP1-b and IL-8 are significantly (actually, very significantly) higher in patients than in controls in the table that Dr. Mikovits showed in one of her lectures, which I've attached to this message - that is a table that shows these cytokines/chemokines levels in XMRV positive ME/CFS patients, versus controls.

Now, the problem is, that you have also two variables that are on the opposite side, allegedly do not support the theory: TNF-a and IL-6 are higher in patients than in controls in the WPI levels, but although you took 7 more months of ARVs, your TNF-a and IL-6 levels were increased, and in very significant numbers.
Now, IL-6, I don't really know what it does. But TNF-a was lately shown in a study to increase XMRV's replication. One theory could be that your body did not produce TNF-a when you had a lot of XMRV in your body, because it understood that TNF-a helps XMRV to replicate - and now, when you have less XMRV in your body, your body lets TNF-a levels increase - but the question is: Why let it increase much more than normal?
Dr. De-Meirleir also found that IL-10 was increased in a group of 16 ME/CFS, XMRV positive patients - but your's got significantly increased when you got on with the antiretrovirals.

I wonder if something like other viruses, or the inflammation, are helping XMRV to replicate, and the ARVs helps (preventing it from replicating even more), but can't get you to actually feel well (because it faces strong forces - perhaps the viruses and inflammation, that helps XMRV replicate - and therefore the ARVs can counter that, but cannot totally defeat it).

But, that's much more question and theories than answers.
Two more questions that I'd be glad if you'll answer:
1) Do you have such (or somewhat similar) cytokine/chemokine test results from before you were on antiretrovirals?
2) Have you recently checked for levels of other viruses? If so - did you see they were increased on ARVs? Decreased? Not changed? Or perhaps you couldn't compare because you had no previous results (or the result was just "positive" or "negative" - which, I actually guess it was...?)?

I also attach Dr. De-Meirleirs poster (results regarding immune profiles of 16 ME/CFS XMRV positive patients).
 

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  • Dysregulated Cytokine_Chemokine Production Detected in Plasma from ME_CFS Patients_ Inflammatory.jpg
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Daffodil

Senior Member
Messages
5,894
omer..thank you so much. i am too foggy to make sense of anything now, but i will surely respond tomorrow. thanks again for taking the time to message:)

sue
xoxo
 

omerbasket

Senior Member
Messages
510
Sue, the things you write and the results of your tests (and of your medication self-trial) are just very interesting. I feel that understanding your situation better can help not just you, but also many others. Perhaps even me, although your health problems seems a lot different than mine.
 

Daffodil

Senior Member
Messages
5,894
thanks omer. a doctor told me that the inflammatory markers suggest virus and they also suggested looking at lyme. i did lyme testing a few times so i doubt its that. also, antibiotics have never had any effects on me. i guess i'll see how it goes on the valcyte. i think i might be a worse (brainwise) on the valcyte so far....

i am still noticing some improvements in energy. i think this brain infection, whatever it is, is keeping me from moving forward. if it wasnt for that, i think i might be on my way to recovery.

i cant seem to change the table...but the units for the cytokines is "pg/mL" and i did mean "<169", "<304"....for some reason, VIP dx didnt print the less-than sign but i called them to clarify it.

sue
xoxo
 
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