13th week of Valcyte

[undcvr]

I want to go further and say something bold (maybe) that I dont think CFS is an illness of the immune system. I think that instead neurotoxins that can overstimulate the CNS and immune system are left to circulate in the body for too long and that is what coses the haywire. I think instead that it is the liver that is either slowed down or unable to detox these class of compounds in the first place that coses CFS.

I think that is it a reasonable explanation as to why viruses that are other while held down are able to become activated.

I think that we should look to the liver to make sure that it is working properly, particularly its pathways of: Methylation, Sulphuration and Glucuronidation.

Looking back, everytime my CFS was in remission it seemed to coincide with me taking large amounts of NAC, 2-4 gm. I am beginning to understand more why so.

 

[undcvr]

My mercury results just came back, 3.0 ug/l. From what i understand the usual score is only btw 0-2.0 and if it is above 2.8 they want you to report it to the DoH.

Also the score is only usually so high after initial exposure since Hg moves from the blood into tissue quickly. So this high a level is scaring me.
No I do not have dental fillings made from Hg.

The test was done by ARUP Labs. ( Thanks Timaca ).

 

[anniekim]

I was reading the reference range for levels of mercury in blood at a lab here in the Uk and they list anything below 3ug to be in the normal range, in case that is of interest

 

[anniekim]

And since then I found the ref range for a NHS lab ( the other lab was a private lab) and they list the reference range as up to 4 ug

 

[undcvr]

Damn withdrawal failure again. I tried to bring down my daily dose on the 6th month anniversary of Valcyte at the highest allowed dose. I tried to drop it from 1800 to 900mg a day. I soon began to have copious amounts of hair loss and started to feel sick under the surface again. I call it feeling 'discombobulated' (new word, learn it !) It is a feeling I know and experience all too well over the years.

I am back up on the Valctye dosage again today. If things go back to normal, it means that I am right and the EBV/HHV6 is being kept in check again.

 

[undcvr]

Doing well. No CFS symptoms since going on a cocktail of AV/ARV drugs.

 

[heapsreal]

good to hear.
you still on 1900mg valcyte or lowered the dose? What is your future plan on using these cocktails, stopping any or lowering doeses etc?

cheer!!!

 

[undcvr]

-Sigh- that is a loaded question and one I was hoping to avoid. I just spent 2 consecutive days working out outside. 2hrs each day. I am fine, I am not feeling any PEM except some subtle residue of it which is to be expected.

I think I will be on the cocktail for another 6 months, or until my liver gives out, which ever comes first. I have just been thinking that on the cocktail I am more useful to the CFS community. I can help work with PR on some stuff and I cud even do some awareness activism stuff on CFS. This is all something to think about in the future but this is the most functional I have ever been in such a long time and I don't want to give it up or waste the opportunity.

That's where my thinking is rite now.

I am still on the 1800mg dose of Valcyte daily.

 

[slayadragon]

Jasper, are you continuing to take Viread and Isentress? What doses? Do you think those have had an effect on you?

There's a question about whether folinic acid (present in large doses in Leucovorin) might actually be a bad thing for some people with this illness. Freddd posits this anyway. Do you have any thoughts?

Thanks much for reporting on your progress.

Best, Lisa

 

[undcvr]

I don't think formyl folate in large doses is a bad thing, I take 7.5mg 2X a day. If anything I think it is helping. I don't understand how formyl folate can actually be bad for you when it is a natural active form of folate that the body needs to actually use.

I take the 2 ARVs at the doses that are prescribed for HIV patients and I take 3 other AVs simultaneously. I am not sure about Viread but I do think that Isentress does help. But the corner stone of the regimen is still Valcyte at 1800mg a day.

Lisa, one thing that I have noticed about is me that I do take large doses of alot of things that do bother alot of other pple with CFS. I am not so bothered by these supplements or drugs even. Eg, I take about 4 - 6gm of NAC a day and can take up to 5 5mg MB12 (Jarrow's) a day. It does not bother me.

This is strange because anything less than 1800mg a day of Valcyte and the viruses are reactivated. I always thot that since it takes so much Valcyte to suppress the virus, the viral load in me must be very high and it must be doing alot of damage and if it did it would make me very sensitive to supplements that would actually help CFS. But so far I have been okay ...... go figure.

 

[heapsreal]

-Sigh- that is a loaded question and one I was hoping to avoid. I just spent 2 consecutive days working out outside. 2hrs each day. I am fine, I am not feeling any PEM except some subtle residue of it which is to be expected.

I think I will be on the cocktail for another 6 months, or until my liver gives out, which ever comes first. I have just been thinking that on the cocktail I am more useful to the CFS community. I can help work with PR on some stuff and I cud even do some awareness activism stuff on CFS. This is all something to think about in the future but this is the most functional I have ever been in such a long time and I don't want to give it up or waste the opportunity.

That's where my thinking is rite now.

I am still on the 1800mg dose of Valcyte daily.

I would just be interested to see how long it takes on av's etc to beat these viruses back and then be able to come off them and hold your condition. Why in an earlier post i wanted to find out how some of montoya's first 2 valcyte patient studies are going as they were on the av's for 6 months, wondering if they maintained there improvement or had to go back on valcyte. Also dr lerner keeps his patients on av's for several years but havent heard much about how long he keeps them on valcyte for. I have heard a rumor that montoys now keeps his patients on valcyte longer but users lower doses but would be good if one of his patients could confirm this for us.

cheers!!!

 

[undcvr]

Based solely on how I am responding to it, 6 months is not enuf and I am sure it is longer now for Montoya.

 

[undcvr]

Not sure if this will help anybody but this is what I am taking. It is working and I do not have CFS while on it. Valcyte helps alot but I also believe that the other stuff is helping as well. I will tweak it in future as things change.

Valcyte 1800mg
Valtrex 2gm
Famvir 1gm
Amantadine 200mg
Tamiflu 75mg

Viread 300mg
Isentress 400mg

Arteminisin 200mg
LDN 4.5mg

 

[slayadragon]

That indeed is a lot of antiviral medication! Has your system showed any negative signs from the drugs?

I took a combination of Valcyte and Famvir, plus some Lamictal, for more than a year. It felt like I was doing fine -- my liver enzymes were only a little raised and the WBC's were okay.

Then I managed to do a very intense detox, I believe of a lot of the biotoxins that were in my brain. After that, my liver totally went out and I had to stop all the drugs. I intended to do it only briefly, but it didn't feel like I needed them any more. (The toxins also tore up my intestinal tract, so I've been working on that.)

My "working hypothesis" at present is that the toxins stored in our bodies create a terrain that makes it easy for various pathogens to proliferate, and that until we detoxify the terrain, the only way to keep the pathogens under control is with drugs (if things aren't so far advanced that they don't work either).

People who are early in the illness may not have the really bad terrain, and thus may not have to stay on the drugs forever, perhaps.

It is interesting that you can tolerate all those drugs. Have you been reading Joey's comments on CGMAF and C4a?

 

[undcvr]

So far so good with the liver enzymes test. One thing that was very interesting for me was that WBC count actually went up after being on the AV/ARVs for so long. I was really amazed by that. My WBC count was actually chronically low for a very long time.

I agree with your hypothesis and every now and then do check myself for heavy metals, I have not found anything out of range yet. No way for sure how to know what biotoxin to exactly look for but I think if I wanted to detox fat cells in my brain I would try to use glucoronic acid for that. I am also not so sure about the hypothesis after having tried several detoxes myself. The other thing I can think of is that our bodies some how provide an environment to trigger HHV6 and EBV to go on a more virulent path then it would have in a more healthy person. It could all be the timing and the point of time we were infected by them and I guess things just start to snowball from there.

I am reading Joey's thread on GcMAF but not really understand the concepts behind it.

 

[atoska]

hello undcvr!
Im happy to hear that you dont have cfs while on those drugs. Its nice to hear that some people can feel good with this illness
Im also seeing Dr Montoya and taking acyclovir. I have only been on it for three months now. My body didnt tolerate it good at the beginning, so I can only take 800 mg a day untill next week when I have to raise my dose again to 1200 mg.
So far Im not feeling better but worse.
I think I have read that you already felt better within 3 months of the treatment. is that right?
how long had you had the illness before you started the treatment? how bad were you feeling before the treatment?
Ive had it for 11 years, maybe thats the reason why it will take longer for me to feel a little better?
Is Dr Montoya prescribing you all those antivirals?
what herpes virus did you have? epstein barr, hhv6, cmv...?
im a little afraid that instead of helping me the av are hurting me. but im still confident that they will some day work
thanks for posting your experience! its very helpful to read it!

 

[undcvr]

It would seem that taking the Valcyte at such a high dose is beginning to catch up with me. I just had some lab work come back and both my white and red blood cell count is starting to fall outside of the lower end of the reference range.

 

[heapsreal]

So whats going to be your plan? Do you think higher doses of av's like famvir/valtrex would be enough to supress your viral load while taking a break from valcyte??
Are you feeling well still?

cheers!!!

 

[undcvr]

It's weird but I am feeling fine. I play about 4-5 hrs of tennis a week and I feel fine afterwards.

 

[perovyscus]

Interesting. I'd be willing to try this, although I don't know why the adamantine and tamiflu are added. I assume for broad-spectrum activity, do you attend the more famous doctor in NYC or just a general PCP? The retail price of this regimen is on the low side , so I'd have to convince Enlander to do this...