Anti Retro-viral treatment

C

Cloud

Guest
#1
Hopefully someone will let me know if I have missed a thread of this same topic.

I am interested in following safety and efficacy of any anti retro-viral drug treatment of xmrv. I have been on Vistide for almost a year and need to go off the drug soon. I am yet to get my xmrv results, but if I'm xmrv positive I will need to consider anti retro-viral drug treatment or face an almost certain re-activation of the Virus's now suppressed with the Vistide. I know this sounds strange that I would be concerned since I'm currently on a dangerous anti-viral drug anyhow, but I am reluctant to start anti retro-virals without some stats on how well it's helping and the side effects. So, please share if you will. And if confidentiality is important, please send me a private message....thanks
 
Kati

Kati

Patient in training
#2
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Ross, is the maximum use for vistide 1 year ??? Is that the reason you need to get off it? I wonder because if it's working, why stop?

Let me know if this is too personal information, I don't want to offend you.
 
C

Cloud

Guest
#3
Hi Kati.....No offense at all.....Ask me anything.

I think Dr Peterson's understanding of the best ways to use these anti-virals such as Vistide is always evolving. Originally I understood that 6 months would be it for the treatment, but I kept going beyond that because I continued to improve. I have made dramatic improvements on Vistide, but have plateaued in my progress over the last 2-3 treatments.....So, it appears that I may have maximized the benefit from the Vistide and, this is the reason I need to stop treatment soon. Dr Peterson did tell me that he typically does a med holiday with anti-virals in general at 1 year. I know he is concerned about viral re-activation for me if I'm xmrv positive, but one cannot stay on Vistide indefinitely for those purposes alone. Even if my liver and kidneys could take it, the insurance company isn't going to go for it at $2000.00/month for the Vistide alone.
 
Kati

Kati

Patient in training
#4
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Med holiday... hmmmm could I possibly have disease holiday pleaaaaaase? ;)
 
T

Timothy Luckett

Guest
#5
I think the quicker you go on an antiretroviral, the better. Isentress would be my prime choice - very few side effects, and it showed high activity against its closest relative. AZT can have nasty side effects, which are dose dependent - newer drugs are better, we don't yet know whether non-nucleoside reverse-transcriptase inhibitors have any effect on XMRV. If you lower your XMRV viral load, your immune system will be able to keep CMV in check. 450mg daily split in two might be a good start - half the dose used for HIV.
 
C

Cloud

Guest
#6
Thanks Timothy,

I think your right that it would be best to hit the xmrv immediately in my situation. I agree that knocking the xmrv viral load down would enable my immune system to keep the CMV in check, that is IF xmrv is truly the "puppetmaster". We don't know that it is for sure yet. We also don't know how well people are responding to anti retro-virals yet. I sure would like a few months grace to allow these questions to be answered before taking more heavy meds. But, I also don't want to lose a year of very hard work and recovery. Appreciate you advice.
 
R

richvank

Senior Member
#8
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Bringing up the immune system

Hi, Ross and the group.

I'm glad you have gotten benefit from antiviral treatment, Ross. As you know, the hope is that the immune system will be able to take over and keep down the viruses after antivirals have knocked them down a bit.

In CFS, I don't think we can just assume that the immune system is ready to take over. In fact, there is lots of evidence that the immune system is dysfunctional, and particularly the aspects of it that normally control viral infections, i.e. the natural killer cells and the cell-mediated immunity. Some of this dysfunction may well be due to actions of the viruses themselves in countering the immune defense of the body. However, there appear to be other factors suppressing the immune system as well.

For what it's worth, the Glutathione Depletion--Methylation Cycle Block hypothesis offers an explanation for the immune dysfunction. The glutathione depletion (observed in lab tests), partial methylation cycle block (observed in lab tests) and depletion of the folate metabolism (observed in lab tests) are tied together by this hypothesis, and these abnormalities are known to interfere with the operation of the immune system, and particularly the cell-mediated immune response.

Experience with treatment based on this hypothesis (reported at the IACFS/ME conference earlier this year) is that if the methylation cycle block is lifted, glutathione and the folate metabolites are brought back to normal. This is likely to at least help to restore the immune system to normal operation. Sufficient testing has not yet been done to determine the immune function before and after treatment, but patients in the clinical study reported statistically significant improvements in energy, freedom from pain, mental clarity, sleep, and overall feeling of wellbeing, which suggests that the immune system function improved, among other improvements in the biochemistry.

My point is that I think it is important to improve the "terrain," including the function of the immune system, as part of the approach to dealing with viral infections in CFS. If you want to know more about this, my papers can be found in the files section of the Yahoo cfs_yasko group's website.

Best regards,

Rich Van Konynenburg
 
jackie

jackie

Senior Member
#9
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Hi guys!:) Anybody want to venture an opinion on what to do (if I test for XMRV and am positive) regarding the protocol of long term/high dose Acyclovir?

Would I need to stop that or ADD an Antiretroviral (as in a "cocktail")? I've been at 3200mg. daily for about 1.5 yrs....titrating up to this dosage from a starting point of 1,000mg over 3.5 years ago.

I've had no break or "drug Holiday" in that time.:(

I should be adding an Immune-modulator to the antiviral...but simply haven't felt up to it. I've been told that 3200mg. SHOULD be ok - for another year or two.

I react badly to any attempt to even REDUCE my dosage - by say, 800mg. a day....let alone STOP!? Although, IF I begin adding an Immune Modulator, and IF I don't experience any Shingles outbreak for 3 months..I can attempt to reduce my dosage by one (800mg.) per day. (Sigh....such a LONG time - and I'm getting pretty tired of this!):rolleyes:

The main area of improvement is with my significant memory and cognitive problems....but still, that alone is worth what I have to put up with.

A bit less pain (which has also been a real problem as I'm usually a 5/6 on a good day -neuropathic type)....but an increase in fatigue, PEM and OI, and the flu-y sore throat swollen glands stuff.

Also, I've developed Shingles and am now having outbreaks nearly every month (located on the back of my neck - from a lymph gland/nerve pathway source). I can't imagine what my life will be like when I'm forced to stop the Meds.:eek:

I've been wondering if my dosage might "tweak" any XMRV test results?

Any ideas from the peanut gallery?;)

(BTW that 5/6 is for the pain scale...not energy/activity level - which is more like a 2, I guess)

jackie;)
 
cfs since 1998

cfs since 1998

Senior Member
#10
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jackie said:
Hi guys!:) Anybody want to venture an opinion on what to do (if I test for XMRV and am positive) regarding the protocol of long term/high dose Acyclovir?

Would I need to stop that or ADD an Antiretroviral (as in a "cocktail")? I've been at 3200mg. daily for about 1.5 yrs....titrating up to this dosage from a starting point of 1,000mg over 3.5 years ago.
Click to expand...
If it were me, I would take both.
 
C

Cloud

Guest
#11
richvank said:
Hi, Ross and the group.

I'm glad you have gotten benefit from antiviral treatment, Ross. As you know, the hope is that the immune system will be able to take over and keep down the viruses after antivirals have knocked them down a bit.

In CFS, I don't think we can just assume that the immune system is ready to take over. In fact, there is lots of evidence that the immune system is dysfunctional, and particularly the aspects of it that normally control viral infections, i.e. the natural killer cells and the cell-mediated immunity. Some of this dysfunction may well be due to actions of the viruses themselves in countering the immune defense of the body. However, there appear to be other factors suppressing the immune system as well.

For what it's worth, the Glutathione Depletion--Methylation Cycle Block hypothesis offers an explanation for the immune dysfunction. The glutathione depletion (observed in lab tests), partial methylation cycle block (observed in lab tests) and depletion of the folate metabolism (observed in lab tests) are tied together by this hypothesis, and these abnormalities are known to interfere with the operation of the immune system, and particularly the cell-mediated immune response.

Experience with treatment based on this hypothesis (reported at the IACFS/ME conference earlier this year) is that if the methylation cycle block is lifted, glutathione and the folate metabolites are brought back to normal. This is likely to at least help to restore the immune system to normal operation. Sufficient testing has not yet been done to determine the immune function before and after treatment, but patients in the clinical study reported statistically significant improvements in energy, freedom from pain, mental clarity, sleep, and overall feeling of wellbeing, which suggests that the immune system function improved, among other improvements in the biochemistry.

My point is that I think it is important to improve the "terrain," including the function of the immune system, as part of the approach to dealing with viral infections in CFS. If you want to know more about this, my papers can be found in the files section of the Yahoo cfs_yasko group's website.

Best regards,

Rich Van Konynenburg
Click to expand...
Thank you Rich,

As a matter of fact I do want to know more about this and will visit the yasko site. I have currently put this issue front and center because of once again experiencing a great response with SAMe which says a lot. It's a response that is beyond the usual "great response" that all us pwc's get with many things. I can tell that it affects a core problem for me. I know very little about this Methylation blocking problem....but can clearly see that I need to check it out. It would be interesting to see how much xmrv has to do with this problem.
 
D

DSan

Guest
#12
richvank said:
Experience with treatment based on this hypothesis (reported at the IACFS/ME conference earlier this year) is that if the methylation cycle block is lifted, glutathione and the folate metabolites are brought back to normal. This is likely to at least help to restore the immune system to normal operation. Sufficient testing has not yet been done to determine the immune function before and after treatment, but patients in the clinical study reported statistically significant improvements in energy, freedom from pain, mental clarity, sleep, and overall feeling of wellbeing, which suggests that the immune system function improved, among other improvements in the biochemistry.

My point is that I think it is important to improve the "terrain," including the function of the immune system, as part of the approach to dealing with viral infections in CFS. If you want to know more about this, my papers can be found in the files section of the Yahoo cfs_yasko group's website.
Click to expand...

Ross,

From my own experience, I completely agree with Rich. After receiving my genetic results from the testing that Dr. Yasko recommends, I did the protocol for 5 months. I'd probably still be on some form of it if not for the prohibitive cost. What helped the most was fixing my gut dysbiosis (she will also recommend a CDSA, though all the testing in her protocol is optional). Info from the CDSA allowed me to reduce my yeast and bacterial load through natural supps that she recommends dependent upon on your issues. My next step would have been metal detox and reducing viral loads, but unfortunately, I ran out of funding before I could do that.

While on Yasko, I reached a place where I could play touch football in the backyard with my kids for about an hour with a minimal crash. That was after two months of it. I had more energy, mental clarity, etc., just as reported at the conference Rich mentioned.

Looking back, I think what the protocol accomplished was to reduce many of the factors that perpetuate the "hypersensitive" state that is CFS, which seems very similar to neurological inflammation found in autism.

This protocol is certainly worth the investment of resources, and dedication it takes to conquer the formidable learning curve as to how it all works.

DSan

P.S. Rich, thanks so much for all that you do, and have done, for the CFS community.
 
pinkytuscadaro

pinkytuscadaro

#19
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Location
Seattle Washington
Cloud your experience on Famvir?

Cloud,
You have posted that your health improved while on famvir. Would you please tell me about your experience? Are you still taking it? If so what dose...etc. I have just started on it.
CFS 24years xmvr+
Thank you,
Pinky
 
C

Cloud

Guest
#20
pinkytuscadaro said:
Cloud,
You have posted that your health improved while on famvir. Would you please tell me about your experience? Are you still taking it? If so what dose...etc. I have just started on it.
CFS 24years xmvr+
Thank you,
Pinky
Click to expand...
Hiya Pinkytuscadaro (cool name), I was on Vistide (not Famvir) for one year from December 2008 - December 2009. I have been off that med for 1 year now. I was 90% bed bound, had severe OI, was very sick prior to Tx. Since treatment I have returned from that bed bound abyss and still have not relapsed (which was/is a huge concern). I am still disabled with PEM being my worst symptom, but I have made very significant improvements.

I have never taken Famvir.....only Valtrex and Vistide. Valtrex is kool-aid. Vistide is big guns and had a major impact on my illness. It's an IV treatment done every 2 weeks for a year (for me). It was a huge investment (time, money, stress, everything)...but I wouldn't hesitate to do it again in spite of the risks. Send me a message any time if ya want to chat more about it.

Wish you all the best with your treatment. I know that Famvir has been helpful for many people.
 
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