POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

Which ME/CFS Treatment Protocols Have You Tried, And What Was The Result?


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heapsreal

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@heapsreal, if you see the discussion above, contrary to what I said earlier, @Wonkmonk points out that high doses of Valtrex and Famvir have been shown to work against cytomegalovirus. So maybe your continuous use of Famvir over the years did help fight CMV. What daily dose of Famvir have you been using over the years?
Yes i did read the comments further down after making my post.

I recall dr Lerner saying it can several years to clear out and suppress these herpes viruses. Many quit of they dont feel any results in a couple of weeks, ive suggested 3 months but maybe for some it takes much longer. I can see people being hesitant or discouraged when told a treatment can take years. Theres not alot of ways to measure progress unfortunately, and progress can be at a snails pace and hard to judge if its helping. Also hard to test that these viruses are active, so jumping on a treatment that can take years and a cost that adds up. Its really an educated guess/gamble??

Ive been on famvir since 2009. Stopped several times but have had viral symptoms return as well as blood work indicating some type of infection. The first few years i was taking 250mg twice a day. I think 2015 when shingles became an obvious issue for me and i think this was when i started taking 500mg twice a day. I would still have the odd viral flare up and would take 500mg four times a day for a couple of days. Im currently on 500mg twice a day. My last shingles flare up was september and short lived with high dose AV to nip it in the bud.

If i can go 12 months with no flares, i will look again at stopping. I will add that ive also had big improvements on TRT. My testosterone levels have steadily been dropping since cfs and my free testosterone has always been low since cfs. Testosterone in men is greatly under rated in its effects on a mans immune function. HIV research has shown great improvements in immune function when testosterone levels are optimized. Treating infections directly is important but it needs to be backed up by something to get the immune system firing. There is hiv research showing trt increasing nk function in these people. Also my neutrophil count has been low for many years and now my neutrophil count is within normal range.

Sorry for the long post but i had to mention the avs have been very helpful but also that trt has been greatly added to my current improvements. Id rate myself at 9-9.5 out of 10.
 

zzz

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I would have voted for a major improvement from Valcyte, except that the option says "MAJOR IMPROVEMENT FROM: Valcyte for ME/CFS linked to EBV, HHV-6 and/or CMV", and the detailed explanation says:
Voting for Valcyte: only vote if you tried this treatment for at least six months at a dose of around 450 mg twice daily. And only vote if you tested positive for a chronic active infection with one or more of the following: Epstein-Barr virus, HHV-6 and/or cytomegalovirus, which you used Valcyte to treat. Dr Lerner says that antibody titers of 1:160 or higher are indicative of an active HHV-6 infection in the LabCorp HHV-6 IgM and IgG tests.
Throughout my illness, I have never tested positive for an active infection of any herpes virus. Nevertheless, starting in April 2001, based on a positive test result for Dr. John Martin's "stealth virus" (supposedly a variation of CMV, and for which definitive proof of existence has not been shown), I underwent a seven-week course of IV ganciclovir (the active metabolite of Valcyte) at a dose of 900 mg/day, which is equivalent to a dose of Valcyte at 900 mg/day. At the end of this seven-week period, my condition had improved two levels, from severe to mild. For this reason, @Hip, I do not think that a time minimum of six months should be necessary for Valcyte treatment in this poll, as there were many other people who responded as I did. Typically, people began responding after about two weeks with IV ganciclovir, as I did.

Several months later, when Valcyte was released, I began taking it at a dose of 900 mg/day, and continued to do so for the next five years. During this time, the gains I had made were consolidated, and I continued to slowly improve within the "mild" category.

These results can be understood in light of Dr. Montoya's findings (and my own experience) that Valcyte is a powerful immune modulator, as well as Dr. Montoya's findings that Valcyte reduces microglia-induced inflammation in the brain. From my experience, and from those of many others at the time who took Valcyte and/or ganciclovir, it appears that this drug can be very helpful to PWME regardless of their history with herpes viruses. (Dr. Martin's test results for stealth virus among PWME were 100% positive, with a small number of positives among healthy controls.) It is unfortunate that no controlled testing of Valcyte among PWME without herpes infections has been done. However, @Hip, I don't think that these people should be excluded from your poll.

I later developed major drug sensitivities that prohibited me from taking many drugs at their standard doses, including Valcyte. However, starting in 2015, I found that not only could I tolerate 1/32nd of a tablet (14 mg) per day, but that this tiny amount was sufficient to move me one level in the severity scale - from severe (to which I had fallen back) to moderate. I have had other issues that have been working against me in this illness, so I have been struggling to stay in the moderate range, but a recent increase in my dose of Valcyte to 1/16th of a tablet (28 mg) per day has helped. Obviously, at these levels, the antiviral activity of Valcyte is negligible, but the immunomodulatory and anti-inflammatory effects appear to be strong, as some others have found as well. For this reason, I don't think that a dose requirement of 900 mg/day should be required. Although no major ME/CFS doctors have used Valcyte at these low doses on a routine basis, Dr. Montoya started using doses lower than 900 mg/day on some patients several years ago, as his views on the way Valcyte worked and the significance of adverse reactions gradually evolved.
 

ebethc

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Yes, this is what I was getting at. I meant diagnosing and treating bacterial co-infections. Dr Lerner finds that patients with bacterial co-infections don't benefit from antiviral treatment - and let's assume that is a correct finding - then Dr Montoya should also look at co-infections and treat them if they exist before starting antiviral treatment.

I am not sure, but it's possible that Prof Montoya thinks that treating these bacterial co-infections usually does not lead to any improvements (eg, treating chronic Lyme with antibiotics rarely helps).
are either of you saying that montoya (or anyone else) advocates that the bacterial infection must be treated before the viral infection? I've noticed that sequence is important..eg I had a long-term gut infection (bacterial) and nothing else worked until I got past the stomach infection.
 

Wonkmonk

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Dr Lerner definitely treats (some) bacterial infections, if tests are positive, before starting antivirals. I don't know about Dr Montoya.
 

Wonkmonk

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These results can be understood in light of Dr. Montoya's findings (and my own experience) that Valcyte is a powerful immune modulator, as well as Dr. Montoya's findings that Valcyte reduces microglia-induced inflammation in the brain.
There may be two types of Valcyte responders (a) those responding because of immunemodulation and they respond very quickly, and (b) those responding because of the antiviral effect, which takes a lot longer.

In (b) it takes 6 months because it doesn't kill the virus and just stops replication (and not completely), so to get the actual viral load down, including inside the reservoir cells, takes time.
 

ErdemX

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I would have voted for a major improvement from Valcyte, except that the option says
I think you should still vote for Valcyte and the duration or dosage of the treatment should not be important in the poll, if a person has major or minor improvement from that treatment in any way.
 

TenuousGrip

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I am not sure if Prof Montoya checks and treats bacterial co-infections,
Montoya's clinic checked me for:

HSV-1 - IgG
HSV-2 - IgG
CMV - IgG
CMV - DNA - PCR QUANT
HHV-6 - DNA
EBV - EBNA - IgG
EBV - EA - IgG
EBV - VCA - IgM
EBV - VCA - IgG
CBC with DIFF
Arsenic
Cadmium
Mercury
Lead
Neutrophil-specific antibodies
-- Saccharomyces cerevisiae Ab IgA
-- Saccharomyces cerevisiae Ab IgG
HHV-6 - IgG
HHV-6 - IgM
Mycoplasma Pneumoniae - IgM
Mycoplasma Pneumoniae - IgG
C. Pneumoniae IgA
C. Pneumoniae IgG
C. Pneumoniae IgM
C. Psittaci IgA
C. Psittaci IgG
C. Psittaci IgM
C.TRACHOMATIS IGA
C.TRACHOMATIS IGG
C.TRACHOMATIS IGM
Parvovirus B19 - DNA
Coxsackie A10 AB
Coxsackie A16 AB
Coxsackie A2 AB
Coxsackie A4 AB
Coxsackie A7 AB
Coxsackie A9 AB
Coxsackie B1 AB
Coxsackie B2 AB
Coxsackie B3 AB
Coxsackie B4 AB
Coxsackie B5 AB
Coxsackie B6 AB
Echovirus Type 11
Echovirus Type 30
Echovirus Type 6
Echovirus Type 7
Echovirus Type 9
Comprehensive Metabolic Panel
MTHFR

Based on my specific results I was treated with three or four months (can't recall which) of Doxycycline for c.pneumoniae and m.pneumoniae ... so I think they test for many of the co-infections but I don't see where they did any Lyme testing ... at least on me.

HTH
 

Hip

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I underwent a seven-week course of IV ganciclovir (the active metabolite of Valcyte) at a dose of 900 mg/day, which is equivalent to a dose of Valcyte at 900 mg/day. At the end of this seven-week period, my condition had improved two levels, from severe to mild.
Very interesting post, zzz.

That certainly sounds like a spectacular improvement, two levels in 7 weeks of IV ganciclovir. So you were literally bedbound with severe ME/CFS, and 7 weeks later you had only mild ME/CFS (which usually means patients are fit enough to go to work)? Would you have any weblinks to stories of other ME/CFS patients that have responded that fast to ganciclovir or Valcyte?

One theory that might explain your rapid response to this antiviral is that you could have a chronic productive viral infection that ganciclovir can address, rather than the chronic abortive infections that Dr Lerner believed underpins herpesvirus ME/CFS.

In Dr Martin Lerner's abortive infection theory of ME/CFS, ME/CFS patients are posited to have abortive herpesvirus infection (where the virus infects a cell, and the infection is ongoing in the cell, but the virus is not able to replicate and not able to produce more viral particles); these contrast to productive viral infections (where the virus is able to replicate in a cell and produce many more viral particles).

Dr Lerner believed the reason it takes up to 2 years before the full benefits of herpesvirus antivirals such as Valtrex or Valcyte manifest in ME/CFS patients is because these antivirals do not target the abortive infection; these antivirals can only inhibit the productive viral infection.

But because in the body a productive viral infection may help replenish and maintain the abortive infection, if you target the productive infection with Valtrex or Valcyte, eventually the abortive infection will dwindle. That's the theoretical basis of Dr Lerner's antiviral treatment of ME/CFS. And this theory offers an explanation of why it seems to take an inordinately long time for Valtrex or Valcyte to work in ME/CFS patients.

Normally antiviral just take a matter of weeks to work, so the fact they usually take up to 2 years to manifest full benefits indicates that we may not be dealing with a regular productive infection in ME/CFS.

Dr Lerner says that if antivirals were developed which could directly target the abortive herpesvirus infections he posits exist in ME/CFS, then patients would get better in a matter of weeks, rather than many months or years.

So in your case, one could speculate that your ME/CFS might not be due to an abortive infection, but rather a normal productive infection, which may be why ganciclovir worked so rapidly for you.



Another thing: if I remember correctly, did you not have issues with varicella zoster virus? Since ganciclovir / Valcyte is active against VZV, that might explain your success with this antiviral. There are some theories that suggest VZV might be involved in ME/CFS.



These results can be understood in light of Dr. Montoya's findings (and my own experience) that Valcyte is a powerful immune modulator, as well as Dr. Montoya's findings that Valcyte reduces microglia-induced inflammation in the brain. From my experience, and from those of many others at the time who took Valcyte and/or ganciclovir, it appears that this drug can be very helpful to PWME regardless of their history with herpes viruses.
The immunomodulatory and microglial activation-inhibiting effects of Valcyte certainly could provide another explanation of why Valcyte works for some ME/CFS patients, and Prof Montoya has pointed out these possibilities in his published studies.

It would be interesting to know how many ME/CFS patients who do not have any active infection with any of the herpesvirus infections that Valcyte targets (namely EBV, HHV-6, CMV, VZV, HSV-1 and HSV-2) get improvements in their symptoms from Valcyte. In such patients, you might speculate that the benefits were due to the immunomodulatory and microglial activation-inhibiting effects of Valcyte.



For this reason, @Hip, I do not think that a time minimum of six months should be necessary for Valcyte treatment in this poll, as there were many other people who responded as I did. Typically, people began responding after about two weeks with IV ganciclovir, as I did.
The reason I stipulated a minimum of six months treatment (not only for Valcyte but also for other treatments in this poll) is that I did not want people who had only half-heartedly tried these treatments and got negative results to vote.

For example, if someone tried Valcyte for say only six weeks, and then got no improvement, I would not want them voting in this poll, because they have not given Valcyte a chance to work. Their negative results are thus not valid, and would skew the results of the poll if they were included — in a way that would make Valcyte seem less effective than it actually is.

So the six months stipulation is just a safeguard against that (in fact it should really be a bit longer than 6 months, because Lerner's clinical trials showed that the full benefits of Valcyte and Valtrex only appear after 2 years).

This is also the reason I stipulated that ME/CFS patients should have high titers to herpesvirus infections: to ensure that Valcyte was appropriately used (the antiviral effects of Valcyte would be of no use in patients with purely enterovirus infections).



But I do think your results with ganciclovir / Valcyte are very interesting, and perhaps we need to have another poll just on people who took ganciclovir / Valcyte, a poll focusing on the timescale of their improvements. As you suggest, perhaps there could be two subtypes of patients who respond to Valcyte: one subset has a rapid response appearing in less than 2 months; but for the another subset it may take up to 2 years for the full benefits to manifest.
 
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Hip

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@TenuousGrip, do you know if the coxsackievirus B and echovirus tests you got from Montoya were done at ARUP Lab, which uses the antibody micro-neutralization technique?

If Montoya's lab used antibody measurement techniques such as ELISA, IFA or CFT, these are not considered sensitive enough to detect the chronic enterovirus infections in ME/CFS patients. Only the neutralization technique is found to be reliable. This is what Dr Chia found.
 

Hip

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The Coxsackie tests appear to have been done at Focus Diagnostics. The Echo tests were done at ARUP.
I searched online, but could not find any details of the testing methodology used by Focus. If Focus use complement fixation testing (CFT), then it definitely is insensitive for the chronic enterovirus infections found in ME/CFS; if it is ELISA (also called EIA) or immunofluorescence assay (IFA, also called IFT), then I believe these will have some sensitivity, but are not as sensitive as neutralization or micro-neutralization (as used by ARUP Lab).

Among the ME/CFS specialist doctors, there seems to be this divide in-between those who test and treat enteroviruses (like Dr Chia), and those who test and treat herpesviruses (like Montoya, Lerner, Peterson, Kogelnik, etc).

It's possible that some of the herpesvirus ME/CFS doctors may not be aware that of these difficulties in enterovirus testing, and thus may be using tests that are not sensitive enough for coxsackievirus B and echovirus, so will miss these infections in ME/CFS patients.

Then these herpesvirus ME/CFS doctors may get the mistaken impression that such enterovirus infections are not common in ME/CFS; but this impression may just be down to inadequate testing. I'd like to find out more about the type of enterovirus tests used by the various herpesvirus ME/CFS specialists.
 
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ljimbo423

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These results can be understood in light of Dr. Montoya's findings (and my own experience) that Valcyte is a powerful immune modulator, as well as Dr. Montoya's findings that Valcyte reduces microglia-induced inflammation in the brain

Obviously, at these levels, the antiviral activity of Valcyte is negligible, but the immunomodulatory and anti-inflammatory effects appear to be strong, as some others have found as well.
This is my view of how Valcyte works as well, as a immune modulator. Although the connection to microglial induced inflammation I had forgotten about.

Jim
 

heapsreal

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Wonkmonk

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If you have everything under control with famvir, that's of course better, because it has fewer side effects (although short term use of Brivudine is also usually well tolerated).
 

Wonkmonk

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so I think they test for many of the co-infections but I don't see where they did any Lyme testing ... at least on me.
Thanks for posting this, this is a comprehensive test, but as you say lyme is missing, and streptolysin O also wasn't tested, which indicates streptococcus infection.

But maybe it's not needed...Montoya is an expert, he knows what he is doing.
 

ErdemX

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@zzz

Thank you for sharing your experience with Valcyte. May I ask you how many years have you used Valcyte in its regular dose and did you have side effects from long term use of it?
 

TreePerson

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If you have experienced major improvements from some ME/CFS treatment not included in this poll, please post details in this thread.
Hi @Hip I would be interested to know how many people have benefited significantly from the ketogenic diet. Many people on the Myhill forum seem to experience improvement but not everyone. It’s hard to tell how many. I would be interested in knowing what the percentage is and what the degree of improvement. I haven’t tried this myself. It’s possible you have already run a poll for this.