Antiretroviral Trial

[Daffodil]

hi jackie....my numbers were sometimes a little above normal for HHV6 but 3 yrs of valcyte and valtrex did not really help me.

i have been negative for XMRV but am having the new serology test done....i am worried i will be negative again.

i am also waiting for RNase L, NK cell, and elastase results. i had these tests yrs ago so thought it might be useful to compare.

generally, with the antiretrovirals, what has been happening is, when i add a drug or increase a dose, i start to feel better for 4 days or so, then plateau, and sometimes, start to deteriorate again.

this is definitely going to take a very long time, if it happens.

sue
xoxo

 

[redo]

How's it going with the insomnia sue?

 

[Daffodil]

hi redo. i dont really have too much of a problem with sleep but again i have been sleeping during the day and staying up till about 5 - 6 am.

i am debating whether to add tenofovir. hopefully test results will help with decision.

i wonder if improvements might be more obvious if i wasn't so depressed all the time.

sue
xoxo

 

[gu3vara]

Has the depression started with the meds or is it an old symptoms? depression is a common symptoms of herxheimer reactions so that could be a good sign.

 

[jackie]

thanks sue! I'll be very interested when you have a chance to compare some of these new labs with the previous results....i think this might be an important link for you. (i hope so!)

also...your comment about increasing dosage and feeling better for about 4 days (and crashing and deteriorating) is a bit similar to some complaints ive heard from folks using immune modulators (such as oxymatrine or equilibrant!)...since in your case its the arvs... this gives cause for some thought. (i can sympathize with your constant brain pain - enough to drive one mad! AND never-ending pain just adds to any depression youre experiencing...i have it, but in my case i THINK its the heresviruses (vzv?) as it becomes much more severe during a shingles flare...my assumption only)

take care...jackie

 

[Sheila D]

Antivirals

I am new to this forum having been ill for 32 years. Can someone tell me the kind of dose recommended in Dr Lerner's study on herpes and EBV? Can I take acyclovir or does it have to be Valtrex? My symptoms always improve on 400 mg of acyclovir x twice a day, but I am having difficulty persuading my GP to prescribe them.

 

[Daffodil]

sheila...dr. lerner's dose depends on body mass or something..but usually its 4 g of valtrex a day. you can take acyclovir i think but i am not sure how much you would take.

 

[redo]

I am new to this forum having been ill for 32 years. Can someone tell me the kind of dose recommended in Dr Lerner's study on herpes and EBV? Can I take acyclovir or does it have to be Valtrex? My symptoms always improve on 400 mg of acyclovir x twice a day, but I am having difficulty persuading my GP to prescribe them.

You can read about Lerner's EBV study here:

www.ncbi.nlm.nih.gov/pubmed/12582420
www.ncbi.nlm.nih.gov/pubmed/18019402

But please discuss this topic in another thread.

 

[Daffodil]

gu3vera....i have had depression since before the CFS. i was diagnosed with bipolar disorder but i question every diagnosis i have gotten since i developed CFS. it wouldnt surprise me if i was, though.

because the brain fog muted my emotions so much, i haven't pursued adequate treatment for the depression for a long time. i am still much too sick to travel to psychiatrists at this point.

sue
xoxo

 

[Daffodil]

hi all. felt the return of a little bit of short term memory and insight today. good brain changes.

2 researchers suggested adding tenofovir but my doctor wants to wait.

sue
xoxo

 

[Rrrr]

yaaaaay!!

thinking of you,
rrrr

 

[Daffodil]

ty rrr

dr. mikovits says people who have had it longer take longer.

xoxo

 

[Kati]

so dafodil, does Dr Mikovits thinks you are positive despite your negative results?

 

[Daffodil]

thanks, wildaisy

kati..yes

 

[Daffodil]

hi all. i think i have bad news about my situation. i got partial results from VIP Dx today, which showed that my NK Cell function is about the same as before treatment - maybe a little worse now.furthermore, my recent MRI showed a "tiny focus of increased signal in the right frontal lobe". i guess that is a white lesion CFS people get.

worse of all, i am no longer feeling a lot better, as i was for a few days last week. my brain feels very inflamed again and things are only a little better than before the drugs.

i receive RNase L and elastase results tomorrow. unfortunately, VIP is no longer testing the LMW RNase L, which i really wanted to know.

my doctor reluctantly agreed to give me 1 month of tenofovir but even i feel stupid for taking it now. there is no major improvement as there seems to be with some people. i am beginning to wonder if i even have this virus and have no idea what will become of me if i do not.

sue
xoxo

 

[energyoverload]

daffodil,

when you say you're take azt 300mg a day. is that 1 x 300mg tablet or are your splitting up the dose like 3 x 100mg capsule, morning, lunch and evening... etc..?

I have read that Azt is best absorbed on an empty stomach with very little fat. Therefore it is not very fat soluble, which suggests maybe this drug is not so great for CNS penetration (fatty tissues). On the other hand I believe tenofovir's absorption is enhanced by taking it with a high fat meal. Perhaps this ARV is the most suitable for all the cognitive issues etc. I don't know if you think any of this may help the efficacy of the medications? What's incredible is I just ordered some equilibrant and from taking the first tablet I had a major flare up of all symptoms, so I've stopped it. More interesting, if you look at: 'Broad spectrum inhibitors' on this wiki page: http://en.wikipedia.org/wiki/Antiretroviral_drug - it lists shitake mushroom extract - now look at the ingredients list of john chia's equilibrant - it lists Shittake mushroom extract!! Maybe shittake has far more potent antiretroviral activity than oxymatrine (perhaps targetting more regular viruses)??

Keep on with the ARVs sue i think it will be a rocky road, and for many may take 6months to a year or more to stabalise and have all symptoms disappear! But do not be discouraged! I am currently looking into the ARV route myself, even though I am XMRV negative by culture.

Jake

 

[jeffrez]

It seems crazy to take an anti-retroviral when you don't even know if you have a retrovirus (sorry if I missed anything, I didn't read the entire thread). Especially if you are getting worse - why???

And what if eventually you do turn out to be XMRV positive, and they find an anti-RV that works for XMRV way better than AZT or anything else, but now you can't take it because you've blown out your liver or kidneys taking something you didn't even need?

If it were me, I would stop taking any of those potentially toxic pharmaceuticals (for something you don't even know you have) and instead start taking supplements that are way safer and known to increase NK function, like various kinds of mushrooms (cordyceps, maitake, shiitake, reishi) and so on. JMHO, but it just seems to make more sense to treat what you know you have (impaired NK function, like most of us probably have) than something you might not.

 

[Rrrr]

sue,

this must be so very hard. i'm thinking of you. and i'm right behind you. i have my first appt with an infectious disease doctor this coming month. i hope to have my xmrv results by then and maybe start some ARV...?

cyberhug your way,
rrrr

 

[grant107]

sue,
I think you just haven't given it enough time. Dr. Klimas tested my nk cells when I first got sick in '88 were very low. Later when I get them tested again they had improved but I was still very sick. So, perhaps, your feelings of wellness is not dependent on the nk cell function.
Jean

 

[cfs since 1998]

hi all. i think i have bad news about my situation. i got partial results from VIP Dx today, which showed that my NK Cell function is about the same as before treatment - maybe a little worse now.furthermore, my recent MRI showed a "tiny focus of increased signal in the right frontal lobe". i guess that is a white lesion CFS people get.

worse of all, i am no longer feeling a lot better, as i was for a few days last week. my brain feels very inflamed again and things are only a little better than before the drugs.

Do you mind if I ask what your NK cell function is?

Have you thought about taking some immune modulators too? Isoprinosine, AHCC, or beta glucan. Isoprinosine increases the half-life and peak concentration of AZT. AHCC has liver-protective effects. All three of those should boost NK cell activity.

I think it will just take time to see improvement.

my doctor reluctantly agreed to give me 1 month of tenofovir but even i feel stupid for taking it now. there is no major improvement as there seems to be with some people. i am beginning to wonder if i even have this virus and have no idea what will become of me if i do not.

Good luck. There should be some pretty good synergism between the three. Her stories aren't that detailed, but it seems like Dr. Deckoff-Jones and her daughter didn't start to really improve until they started tenofovir.

daffodil,

when you say you're take azt 300mg a day. is that 1 x 300mg tablet or are your splitting up the dose like 3 x 100mg capsule, morning, lunch and evening... etc..?

I have read that Azt is best absorbed on an empty stomach with very little fat. Therefore it is not very fat soluble, which suggests maybe this drug is not so great for CNS penetration (fatty tissues). On the other hand I believe tenofovir's absorption is enhanced by taking it with a high fat meal. Perhaps this ARV is the most suitable for all the cognitive issues etc. I don't know if you think any of this may help the efficacy of the medications? What's incredible is I just ordered some equilibrant and from taking the first tablet I had a major flare up of all symptoms, so I've stopped it. More interesting, if you look at: 'Broad spectrum inhibitors' on this wiki page: http://en.wikipedia.org/wiki/Antiretroviral_drug - it lists shitake mushroom extract - now look at the ingredients list of john chia's equilibrant - it lists Shittake mushroom extract!! Maybe shittake has far more potent antiretroviral activity than oxymatrine (perhaps targetting more regular viruses)??

Keep on with the ARVs sue i think it will be a rocky road, and for many may take 6months to a year or more to stabalise and have all symptoms disappear! But do not be discouraged! I am currently looking into the ARV route myself, even though I am XMRV negative by culture.

Jake

Hi jake. That is a very interesting idea regarding the absorption of the various drugs. However, it seems that AZT is better absorbed into the CNS than tenofovir (link, 4th paragraph).

The oxymatrine was probably stimulating your immune system and thus the neuro flare.

It seems crazy to take an anti-retroviral when you don't even know if you have a retrovirus

People have been hassling her for months about this. You are beating a dead horse. Give it a rest already!