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

[Hip]

I found a diet forum poll that includes the ketogenic diet, but it does not actually quantify the degree of improvement obtained.

I would have liked to include more ME/CFS treatments in this poll, but unfortunately in PR forum polls, you can only have up to 20 answer options, so there was not enough room.


For this present poll, I was initially thinking of running it as an offsite poll, set up with Google Forms (a free questionnaire survey tool), which could then have included more treatments. I can still do this, I can set up a new offsite poll (that I can link to on multiple ME/CFS forums, in order to get more people voting).

If would like to have included additional treatments such as the ketogenic diet, Nexavir (kutapressin), Ampligen, rituximab, cidofovir (another antiviral), IVIG, inosine, tenofovir, Dr Shoemaker's CIRS protocol for mold, Dr Joseph Brewer's antifungal nasal spray for mold.

No doubt there are other ME/CFS treatments that could be included in a new offsite poll.

If anyone has any suggestions for other ME/CFS treatments that could be included in a new poll, please post here.

 

[ebethc]

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.

I second this...

also, Maureen Hanson is doing research on lipid metabolism problems in CFS.. I personally have problems digesting fats (saturated fats in particular) and am very interesting in seeing what dr hanson finds... keto did not work for me at all, and I'd love to know if that's due to an incompatibility between cfs and keto, or something else...

EDIT: here's a previous PR thread on lipid metabolism, will comments on keto diet:
http://forums.phoenixrising.me/inde...rbances-in-fatty-acid-lipid-metabolism.48474/

and the study:
http://pubs.rsc.org/en/content/articlelanding/2017/mb/c6mb00600k#!divAbstract

 

[Dechi]

I can’t vote because I haven’t tried any of those treatments but how does the percentage add-up ? No matter how I look at it, it isn’t 100%.

 

[Seven7]

I can’t vote because I haven’t tried any of those treatments but how does the percentage add-up ? No matter how I look at it, it isn’t 100%.

BecuSe you can vote more than once.

 

[ljimbo423]

I can’t vote because I haven’t tried any of those treatments but how does the percentage add-up ? No matter how I look at it, it isn’t 100%.

I think the percentage is of the total number of votes. When I looked at it just now there was 91 votes. The first question had 2 votes and that was 5%. 91 x .05% = 4.55%.

It's probably rounded up to 5%. That's my best guess as to how it works!

Jim

 

[jaybee00]

Could include dca dichloroacetic acid

 

[Dechi]

I think the percentage is of the total number of votes. When I looked at it just now there was 91 votes. The first question had 2 votes and that was 5%. 91 x .05% = 4.55%.

It's probably rounded up to 5%. That's my best guess as to how it works!

Jim

2/91 would be 2,2 %. I think @lnester7 has the answer.

 

[Mary]

@Hip - I had testing ordered by Dr. Chia 4-1/2 years ago done at Quest Labs, not Arup - He didn't specify Arup. And the tests were for antibodies, not neutralization of ABS. Results were 1:160 for echovirus 6 and echovirus 9, and 1:160 for Coxsackie B3, and 1:320 for Coxsackie B4.

He had me try Equilibrant for about 3 months, and I had no reaction to it at all. I then tried Inosine which did help me a little, but not much.

So given all this, I don't think I qualify to take your poll since the testing was not exactly as you specified - or should I participate anyways?

 

[Hip]

@Mary, I believe ARUP Lab tests can be ordered through Quest and LabCorp, so it's possible your test results were sent to ARUP via Quest. You might want to check your lab report so see whether ARUP is written on it. If Dr Chia ordered it himself, I think it would most likely be ARUP. And your result of 1:320 for CVB4 indicates you have a chronic active infection with this virus. So I suggest go ahead and vote in this poll if you wish.

but how does the percentage add-up

Ignore the percentages in the poll results. The way to view the results is to look at how may people got: a major improvement, a minor improvement, or no improvement from a particular treatment, and then convert those figures to percentages.

So for example, if we take the methylation protocol, as the voting stands at the moment, 18 people got no improvement, 5 got a minor improvement, and only 1 got a major improvement from methylation. Converting that into a percentage: 100 x 1 / (18 + 5 + 1) = 4.2% got a major improvement, and 100 x 5 / (18 + 5 + 1) = 20.8% got a minor improvement from methylation.

So the methylation protocol has come out pretty poorly in terms of its ability to make major improvements, with only 4.2% of people trying it for six months experiencing a major improvement.

This poor result is at odds with Rich Van Konynenburg's own informal study on his simplified methylation protocol, in which he claimed that "27% reported so much improvement that they now felt essentially well! Several who had not worked in over 5 years were able to resume full-time employment without difficulty."



By contrast, this poll seems to show that Valcyte is a pretty effective treatment, with a high percentage of major improvements. As the poll results stand at present, 3 people got no improvement, 2 got a minor improvement, and 5 got a major improvement from Valcyte. Converting that into a percentage: 100 x 5 / (3 + 2 + 5) = 50% got a major improvement, and 100 x 2 / (3 + 2 + 5) = 20% got a minor improvement from Valcyte.

A 50% chance at a major improvement from Valcyte (for those with herpesvirus ME/CFS) is pretty good odds as ME/CFS treatments go.

Thus the poll so far suggests that Valcyte may be one of the best treatments we have in our arsenal of ME/CFS therapies.

 

[Mary]

@Mary, I believe ARUP Lab tests can be ordered through Quest and LabCorp, so it's possible your test results were sent to ARUP via Quest. You might want to check your lab report so see whether ARUP is written on it. If Dr Chia ordered it himself, I think it would most likely be ARUP. And your result of 1:320 for CVB4 indicates you have a chronic active infection with this virus. So I suggest go ahead and vote in this poll if you wish.

Hi @Hip - I looked over my lab results and saw no mention of ARUP, and then I looked one more time looking at all the fine print at the very bottom, and there it was ARUP - they did do the echovirus and coxsackie B testing, so I'll go ahead and take your poll as to the CVB4

 

[halcyon]

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 intensive 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).

Focus is (or was) Quest. Inexplicably, Montoya and Stanford labs do not do proper Coxsackie B testing. I tried to bring this up with the PA there but she did not seem to understand what I was saying. They do proper echovirus testing but only by accident it seems.

 

[Hip]

I tried to bring this up with the PA there but she did not seem to understand what I was saying. They do proper echovirus testing but only by accident it seems.

Maybe we as the ME/CFS patient community need to write to these various ME/CFS specialist doctors and inform them on how to do proper testing for enteroviruses, which the ME/CFS specialists who focus on herpesvirus ME/CFS seem to know little about. I am sure a lot of active enterovirus infections in ME/CFS are being missed, as it is only antibody tests by the neutralization method that are sensitive enough for enterovirus in ME/CFS.

 

[ebethc]

@Mary
So the methylation protocol has come out pretty poorly in terms of its ability to make major improvements, with only 4.2% of people trying it for six months experiencing a major improvement.

This poor result is at odds with Rich Van Konynenburg's own informal study on his simplified methylation protocol, in which he claimed that "27% reported so much improvement that they now felt essentially well! Several who had not worked in over 5 years were able to resume full-time employment without difficulty."

the drawback of querying ppl on PR is that "major improvement" is unlikely to have a strong showing in any category b/c those folks are not hanging around PR... Querying inactive PR users would be more helpful if the goal is to find major improvements.

Is it possible to survey inactive* users for the above (18 questions)? Also, would you want to leave a couple of blank spaces each for MAJOR / MINOR / NO IMPROVEMENTS for treatments that are not included (e.g. IVIG, SIBO treatment)?

* e.g., "inactive" defined as > or = 6 mos not logged into PR

It would cost $35 w Survey Monkey, https://www.surveymonkey.com/pricing/

 

[Hip]

the drawback of querying ppl on PR is that "major improvement" is unlikely to have a strong showing in any category b/c those folks are not hanging around PR

To an extent, yes, but it depends where you are to begin with on the ME/CFS severity scale of very severe, severe, moderate, mild and remission.

For example, if you were severe to begin with, and treatment provided a major improvement (1-level improvement), then after treatment you will be at the moderate level, which means you still will be housebound and not able to work, and are thus likely to be still reading these forums.

But yes if you have say mild ME/CFS to begin with, that 1-level improvement is going to place you into remission, so then you will likely not be reading this forum very often.

So I agree that you may miss some people who have improved from treatment and then left this forum, and this may skew the results, and make the treatments look less effective than they actually are.

One way around this problem would be to restrict the poll to severe patients only; that way, even if they made a 1-level improvement to moderate, they would still be here on the forum.

Is it possible to survey inactive* users for the above (18 questions) PLUS leave a couple of blank spaces each for MAJOR / MINOR / NO IMPROVEMENTS for treatments that are not included (e.g. IVIG, SIBO treatment)?

It is possible to send PMs to most members of this forum, which they may receive as an email (depending on their messaging settings). So in this way you could ask inactive members to vote. However, to do that manually via PMs would take forever.

It would cost $35 w Survey Monkey, https://www.surveymonkey.com/pricing/

Google Forms allows you to set up a nice-looking survey for free.

 

[Natistar]

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.

Can you tell me your experience with
Famciclovir? Did you feel worse when you first started? When did it start to get better on that medication?

 

[Hip]

When did it start to get better on that medication?

Dr Martin Lerner's study showed that the benefits from Valtrex or Famvir only begin to appear after around 3 or 4 months at a dose of 4 x 1000 mg daily. The full benefits can take up to 2 years to appear.

Dr Montoya at the Stanford clinic uses slightly lower doses, which he says is just as effective.

 

[Stretched]

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.

Likewise. I tried Valcyte a couple of times - hard to tolerate - stopped. Doses were front end
loaded, 4x450mg daily??? Even 2x1 daily had similar effect. This was/is frustrating as my cmv level is high, 10!

Recently went with Dr Skip Pridgen protocol, Famvir and Celebrex (nominal doses). Overall, feeling better last 30 days (less pain) but for some unforeseen reason crashed
today. (Last night with ‘working nightmares’ interfered with sound sleep, significantly.) This occurrence, periodically leads me to think CFS has a direct brain/sleep component, especially considering that agressive rest otherwise lightens the ill load.

Otherwise, ‘have tried some of all popular routines over time. Apparently, they didn’t work ‘cause here I lie on the darned sofa:&

 

[Natistar]

How long did it take you to see results with
Famciclovir? Did you feel bad at first?

 

[Stretched]

How long did it take you to see results with
Famciclovir? Did you feel bad at first?

I’ll add in, FYI. I started with low dose Famvir, 1 pill daily, with Celebrex 30 days ago and no bad feeling at all. In fact, improved, less pain.

 

[Natistar]

I’ll add in, FYI. I started with low dose Famvir, 1 pill daily, with Celebrex 30 days ago and no bad feeling at all. In fact, improved, less pain.

So you didn’t have any bad reaction to
Famciclovir? I can’t eat anything since I took it and I feel like I need to go to the hospital... how depressing