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

[Hip]

If you want to answer the poll, please see read the info below.

For a summary of the poll results, see here:

Poll Results

Percentage of ME/CFS Patients Achieving a MAJOR IMPROVEMENT:

Oxymatrine — — — — — — — — — 13% — — — — — Calc: 100 * 2 / (2 + 3 + 10)
Valtrex or Famvir— — — — — — 13% — — — — — Calc: 100 * 3 / (3 + 10 + 10)
Valcyte— — — — — — — — — — — 50% — — — — — Calc: 100 * 6 / (6 + 3 + 3)
Low-dose naltrexone — — — — — 3% — — — — — Calc: 100 * 1 / (1 + 19 + 15)
Methylation protocol— — — — — 3% — — — — — Calc: 100 * 1 / (1 + 8 + 20)
GcMAF— — — — — — — — — — — — 29% — — — — — Calc: 100 * 2 / (2 + 1 + 4)


Percentage of ME/CFS Patients Achieving a MINOR IMPROVEMENT:

Oxymatrine — — — — — — — — — 20% — — — — — Calc: 100 * 3 / (2 + 3 + 10)
Valtrex or Famvir— — — — — — 43% — — — — — Calc: 100 * 10 / (3 + 10 + 10)
Valcyte— — — — — — — — — — — 25% — — — — — Calc: 100 * 3 / (6 + 3 + 3)
Low-dose naltrexone — — — — —54% — — — — — Calc: 100 * 19 / (1 + 19 + 15)
Methylation protocol — — — — 28% — — — — — Calc: 100 * 8 / (1 + 8 + 20)
GcMAF— — — — — — — — — — — — 14% — — — — — Calc: 100 * 1 / (2 + 1 + 4)


Note that "major improvement" and "minor improvement" are precise terms defined below. The figures reflect the poll results as they stand on 15 March 2019.

This poll asks which standard ME/CFS treatment protocols have resulted in major improvements in your overall ME/CFS symptoms, which treatments have resulted in minor improvements, and which treatments resulted in no improvements (if a treatment actually made you worse, then please choose the no improvement option).

Note that here we are using the terms "major" and "minor" with a precise definition:

A major improvement is defined as one where a patient moves up one level on the ME/CFS severity scale of very severe, severe, moderate, mild and remission. For example, if after treatment a patient moves up from severe to moderate, or moves up from mild to remission, those types of one-level improvements are classed as major.

So if you obtained such a major improvement from one of the treatment protocols in this poll, please vote accordingly.

If the health improvement you got from the treatment protocol was less than major, but is nevertheless definitely noticeable, that is defined as a minor improvement. If you had a minor improvement, please vote accordingly.

Minor is quite a broad category in this poll: from relatively small but clearly noticeable improvements, right up to significant improvements — but ones which are not quite large enough to be classed a major improvement.

In this poll, obviously only vote for treatments protocols that you have properly tried out. Do not vote for a treatment if you have never tried it, or have only half-heartedly tried it.



Rules for Voting in This Poll

To ensure that those who respond to this poll have properly tried the treatment they are voting for, please read the following rules before voting:

Voting for oxymatrine or Equilibrant: only vote if you tried this treatment for at least two to three months to ensure you gave it time to work. And only vote if you tested positive for a chronic active infection with coxsackievirus B or echovirus via the ARUP Lab antibody neutralization tests (titers of 1:320 or higher in the ARUP tests indicate active infection) or a similar antibody neutralization test, or if you tested positive for enterovirus via Dr John Chia's stomach biopsy VP1 stain test, and then used oxymatrine or Equilibrant to treat your CVB and echovirus infection. Oxymatrine / Equilibrant is normally ramped up to 6 x 200 mg pills per day.

Voting for Valtrex or Famvir: only vote if you tried this treatment for at least six months at a dose of around 1000 mg four times daily, which is Dr Lerner's protocol (or a slightly lower dose of 1000 mg x 3 daily which is Prof Montoya's protocol). And only vote if you tested positive for a chronic active infection with Epstein-Barr virus, which you used Valtrex or Famvir to treat. Dr Lerner says elevated antibodies in the EBV IgM VCA test and/or the EBV EA diffuse test by ELISA indicate active EBV infection.

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.

Voting for low-dose naltrexone: only vote if you tried this treatment for at least six months.

Voting for the methylation protocol: only vote if you tried this treatment for at least six months.

Voting for GcMAF: only vote if you tried this treatment for at least six months.


In this poll you are allowed to change your votes at a later date; so if you feel you made a mistake in your voting, you can alter it later.



Further Info on These ME/CFS Treatment Protocols

Note that the treatment protocols listed in this poll are standard ones used by the internationally renowned ME/CFS specialist doctors.

For further info on these ME/CFS treatments, you can search this forum for details, or consult the roadmap of chronic fatigue syndrome treatment which provides a basic overview of these treatments. A comprehensive list of ME/CFS treatments is found on MEpedia.


If you have experienced major improvements from some ME/CFS treatment not included in this poll, please post details in this thread.

 

[*GG*]

I did lots of things around the same time. I have only done LDN of the "standard" treatments.

Think I will pass on this poll at this time

GG

 

[Sushi]

I had "significant" (less than major; more than minor) improvements from Nexavir. I had major improvement in OI from Strattera (norepinephrine re-uptake inhibitor).

 

[Jesse2233]

Excellent poll

 

[Wonkmonk]

Thanks for the poll. Will be interesting. As far as I'm concerned: Minor improvement with Valtrex (so far).

 

[heapsreal]

Major improvement for cmv from famvir??
I got more out of famvir then i did valcyte for cmv, but it may have been different if i had used valcyte first.

 

[ErdemX]

It is also interesting to see that (so far) one of the mostly tried treatments, LDN, did not lead to a major improvement for anyone and did not help majority of patients.

I've been on LDN for 2 years and had no benefit from it, now slowly tapering off.

 

[shannah]

Voting for Valtrex or Famvir: only vote if you tried this treatment for at least six months at a dose of around 4000 mg four times daily, which is Dr Lerner's protocol. And only vote if you tested positive for a chronic active infection with Epstein-Barr virus, which you used Valtrex or Famvir to treat.

@Hip
Is that meant to be 1000 mg 4 x a day for a total of 4000 mg daily?

 

[Hip]

Major improvement for cmv from famvir??

I don't think the benefits you got from Famvir could have been related to cytomegalovirus:

Valtrex and Famvir only work for EBV, varicella, and herpes simplex 1 & 2; unfortunately they don't have much antiviral effects against HHV-6 or cytomegalovirus.

Valcyte has a wider spectrum of activity: it is antiviral for all these viruses: EBV, HHV-6, cytomegalovirus, varicella, and herpes simplex 1 & 2.

Is that meant to be 1000 mg 4 x a day for a total of 4000 mg daily?

Thanks for pointing out that mistake. I've corrected it now.

 

[TenuousGrip]

Voting for Valtrex or Famvir: only vote if you tried this treatment for at least six months at a dose of around 1000 mg four times daily, which is Dr Lerner's protocol.

I'm a Stanford patient.

IIRC, Montoya doesn't Rx dosages anywhere near as high as Lerner did. In Montoya's experience, once you get past a certain point all you get is increased adverse effects; no increased benefit.

For Valtrex, they Rx'd me 500mg 2x/day.

For Famvir, they've Rx'd me 500mg 3x/day.

I'm about 190 pounds/86 kg

HTH.

 

[Hip]

I had "significant" (less than major; more than minor) improvements from Nexavir.

Minor is defined as quite a broad category in this poll: "minor" basically means any improvement that was large enough to be definitely noticeable, but not quite large enough to be classed a major improvement.

Perhaps I should have used to the word "significant" to describe this minor category; that might have been a better choice of word; but unfortunately you cannot edit poll options once the poll is set up.

 

[Wonkmonk]

Valtrex and Famvir only work for EBV, varicella, and herpes simplex 1 & 2; unfortunately they don't have antiviral effects against HHV-6 or cytomegalovirus.

At high doses (8 grams a day), Valacyclovir has some effectiveness against CMV and is used in Germany for CMV prophylaxis after organ transplantations.

Evidence:

http://www.cochrane.org/CD003774/RE...d-deaths-in-solid-organ-transplant-recipients

But I think Heapsreal had a much lower dose, so in that case, it probably wasn't effective.

 

[Hip]

IIRC, Montoya doesn't Rx dosages anywhere near as high as Lerner did. In Montoya's experience, once you get past a certain point all you get is increased adverse effects; no increased benefit.

For Valtrex, they Rx'd me 500mg 2x/day.

For Famvir, they've Rx'd me 500mg 3x/day.

That's interesting, so you say Montoya found lower Valtrex or Famvir doses were just as effective as the 1000 mg x 4 daily used by Lerner? Would you know if Montoya has documented his Valtrex or Famvir dosing protocol anywhere?

I'd like to put his Montoya Valtrex / Famvir dosing protocol for EBV into my roadmap document, in the EBV section, as an alternative to the Lerner dosing protocol. But I really need a documented write-up (eg a study, article or video presentation) as a supporting reference.

At high doses (8 grams a day), Valacyclovir has some effectiveness against CMV and is used in Germany for CMV prophylaxis after organ transplantations.

That's very interesting. The Merck Manual states that acyclovir and its prodrug valacyclovir have "minimal activity against CMV".

However, this study finds that in vivo valacyclovir (Valtrex) 2000 mg x 4 daily had similar anti-cytomegalovirus effects as valganciclovir (Valcyte) 900 mg x 2 daily. Although it was a small scale study with some limitations.

So that study suggests that for cytomegalovirus, 2000 mg of Valtrex is equivalent to 450 mg of Valcyte.

In terms of cost:
Valcyte 450 mg costs $6.91 at AllDayChemist, and $12.59 at BuyPharma
Valtrex 2000 mg costs $3.24 at AllDayChemist, and $7.38 at BuyPharma
Famvir 2000 mg costs $14.60 at AllDayChemist, and $11.96 at BuyPharma


The antiviral spectrum of Famvir and Valtrex are similar. This article says high dose famciclovir (Famvir) has also been used to treat cytomegalovirus:

High-dose valacyclovir, penciclovir, famciclovir, and acyclovir have been used for CMV prophylaxis in organ transplant recipients. The results have been mixed and depend on the transplant population.

 

[Wonkmonk]

Does Dr Montoya the same pre-diagnostic and, if needed, treatment of bacterial co-infections as recommended by Dr Lerner?

 

[TenuousGrip]

That's interesting, so you say Montoya found lower Valtrex or Famvir doses were just as effective as the 1000 mg x 4 daily used by Lerner? Would you know if Montoya has documented his Valtrex or Famvir dosing protocol anywhere?

I'd like to put his Montoya Valtrex / Famvir dosing protocol for EBV into my roadmap document, in the EBV section, as an alternative to the Lerner dosing protocol. But I really need a documented write-up (eg a study, article or video presentation) as a supporting reference.

Unfortunately, I'm not aware of anything like that existing.

I'm going to send you a quick PM.

 

[heapsreal]

I don't think the benefits you got from Famvir could have been related to cytomegalovirus:

Interesting how you know.

About 2007 had a positive cmv pcr test, along with this had elevated T cells, which has been ongoing throughout my cfs. 2017 cmv pcr negative and T cell testing shows all of them within normal range.
Famvir is the medication ive continued to take and regress if i stop it. Its possible varicella has been an issue throughout my cfs as well as cmv.

 

[Hip]

@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?

 

[Hip]

Does Dr Montoya the same pre-diagnostic and, if needed, treatment of bacterial co-infections as recommended by Dr Lerner?

By pre-diagnostic do you mean the viral tests that detect an active infection and determine eligibility for antiviral treatment? Lerner and Montoya seem to use similar but slightly different criteria. For example, for EBV infection:

Dr Martin Lerner says ME/CFS patients have an active EBV infection when there are elevated ELISA antibodies in the EBV IgM VCA test and/or the EBV EA diffuse test. Refs: 1 2

Professor Jose Montoya says a Quest EBV IgG VCA test result of 1:640 or higher and a Quest EBV IgG EA test result of 1:160 or higher is indicative of an active EBV infection. Ref: 1

These diagnostics for the various viral infections found in ME/CFS are detailed in the roadmap.



I am not sure if Prof Montoya checks and treats bacterial co-infections, but Dr Lerner certainly did. However, Lerner found that those with bacterial co-infections did not improve as much as those with purely herpesvirus infections, even though Lerner treated those bacterial infections alongside the viral infections. Ref: 1

 

[Wonkmonk]

I am not sure if Prof Montoya checks and treats bacterial co-infections, but Dr Lerner certainly did. However, Lerner found that those with bacterial co-infections did not improve as much as those with purely herpesvirus infections, even though Lerner treated those bacterial infections alongside the viral infections. Ref: 1

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.

In the Montoya studies I have seen, there is no indication that he tested or treated any of the subject patients for co-infections.

But it's safe to say he knows Dr Lerners research, too, so I am wondering why isn't he doing it?

 

[Hip]

But it's safe to say he knows Dr Lerners research, too, so I am wondering why isn't he doing it?

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 often does not help).