Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

[A.B.]

Which is why there will never been an effective drug treatment aimed at symptom management for ME/CFS. The disease literally knows when you've messed with it and it just pulls another metabolic lever to drag you back down to the sick homeostasis it wants to be in.

Ron speculated that maybe there are too many metabolic deficits to start up again. If the treatment doesn't cover all metabolic deficits maybe a relapse is inevitable.

At least that is one angle to look at it. The other angle being that the body knows what it's doing, and that we need to remove the threat that forces our body into a state of hypometabolism in order to survive.

 

[Tuha]

why is there alcohol intolerance?

 

[A.B.]

why is there alcohol intolerance?

The hypometabolism can theoretically explain many symptoms. Alcohol intollerance could be simply due to reduced production of aldehyde dehydrogenase, which breaks down alcohol.

 

[Snowdrop]

why is there alcohol intolerance?

Admittedly a bit vague but I tend to think it might be related to POTS issues more.

 

[Sidereal]

The hypometabolism can theoretically explain many symptoms. Alcohol intollerance could be simply due to reduced production of aldehyde dehydrogenase, which breaks down alcohol.

Involving perhaps a global downregulation of dehydrogenase enzymes of which there are several key ones involved energy production including glucose-6-phosphate dehydrogenase which is involved in the production of NADPH via the pentose phosphate shunt. Low NADPH was identified as a key problem.

 

[Mij]

After reading these sort of accounts of temporary remission induced by medications, it almost seems to me as if this disease knows where in the body extra energy is being expended, so that when a medication provides some extra energy, the disease then responds by targeting that extra energy, and down-regulating it back to the very low energy baseline that is the normal state of ME/CFS.

I went straight to almost remission with magnesium and taurine injections. I was walking with a smooth gait and was out all day long, granted I was depleted at the time, but why did it stop feeling so great after I stopped the shots? I certainly did not become depleted again that fast, no way. i didn't go back to square one but I was back to running out of stamina quickly.

I also went back on the shots but didn't get the same great results.

 

[caledonia]

@Rose49 and @Ben Howell

This has intrigued me a lot. My dear partner is severely ill ( or was until 12 days ago).

Bit of history on this : 2 years ago I'd given him some of my high dose sodium diclofenac 75mg SRone a day upped to two a day after about 10 days. It had a remarkable effect. He went from being housebound to mowing my lawn. Then at about a month/6 weeks he began getting terrible breathlessness part after having a shower. He was told to stop it immediately as the gp thought it was allergy.

Here is a link showing that diplofenac has a black box warning regarding cardiac side effects - including shortness of breath. It could be fatal.
http://www.everydayhealth.com/drugs/diclofenac

The next question is why would there be a delayed response for this side effect (or any side effect). It may be because the drug depletes certain nutrients over time.

While the manufacturer doesn't admit to any nutrient depletions, this website states it depletes folic acid which could lead to high levels of homocysteine, leading to heart attacks, strokes, etc.

http://bottomlineinc.com/popular-drugs-that-steal-crucial-nutrients-from-your-body/

So if you decide to continue with the drug, it may be a good idea to supplement with folate (the ones listed in the article are good, assuming he tolerates them). If he doesn't tolerate folate, see these articles by Ben Lynch.

http://mthfr.net/methylfolate-side-effects/2012/03/01/
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
I think it would also be a good idea to monitor homocysteine levels and folate levels while on the drug, as well as other indicators for cardiac health.

Note that I'm not a doctor and don't have a medical background. I'm just a well researched patient who knows how to use google. I bear no responsibility if you decide to continue to use this scary killer drug or try these supplements. This is not medical advice, and is solely for educational purposes.

I also don't have any idea why this drug would cause a remission, but maybe another substance could be found which did something similar but wasn't so toxic. At a guess, maybe it has something to do with its action on cell membranes.

See the mechanism of action section, maybe it can provide some clues:
https://en.wikipedia.org/wiki/Diclofenac#Mechanism_of_action

Edited to add - the drug can also be found on this list of drugs that damage the mitochondria
http://www.mitopatients.org/mitodisease/potentially-harmful-drugs

 

[Snowdrop]

This has been the experience of so many people here now--there is quite a collection of anecdotes. I personally don't think this disease is amenable to an easy supplement fix.
A very few people here have managed a remission of some duration but there was lots of trial and error, research into their particular symptoms, and lab testing. Then they discovered things had to be done in a certain order at a certain dose and a particular form of the supplement. And often this will generally lighten your wallet long before any results are apparent.

That's a pretty tall order to expect of sick people especially ones without a science background. It shows a DIY resourcefulness but it's no substitute for proper biomed research for all the rest of us.

 

[knackers323]

Why not both? I'm not sure how LPS could get into the blood at increased rates without some sort of immune reaction. And once there it could trigger a body wide defense strategy that persists even after the problematic food is no longer in the gut.

Sorry has LPS been mentioned as a potential cause here somewhere or are you just throwing around ideas?

How soon after eating the 'wrong thing' do you feel worse?

 

[Hip]

I went straight to almost remission with magnesium and taurine injections. I was walking with a smooth gait and was out all day long, granted I was depleted at the time, but why did it stop feeling so great after I stopped the shots? I certainly did not become depleted again that fast, no way. i didn't go back to square one but I was back to running out of stamina quickly.

I also went back on the shots but didn't get the same great results.

For some reason, it's common on this forum to assume that when benefits are observed from very high doses of vitamins or minerals, that implies you are deficient in those nutrients.

However, this is not a good assumption, because high dose vitamins or minerals can have effects that are beyond their normal nutritional role. In this case, high doses of magnesium can inhibit the NMDA receptor (as can taurine), which has nothing to do with magnesium's nutritional role in the body.

This could be why you experienced benefits. People who have tried the drug memantine, another NMDA inhibitor, have also reported good results (but in one case I heard about, the good results eventually faded).

 

[Mij]

@Hip in my case it was not an assumption, I was tested and found deficient, my doctor would have never have rx'd it for me.

I do understand what you are saying though.

 

[rosie26]

Which is why there will never be an effective drug treatment aimed at symptom management for ME/CFS. The disease literally knows when you've messed with it and it just pulls another metabolic lever to drag you back down to the sick homeostasis it wants to be in.

For some of us I think the problem is an altered microbiota in different areas of the body which is keeping this illness activated and the question is how do you correct a microbiota so that it stops activating the immune system. If you can't fix the altered microbiota then it would need an immune system treatment. I think this illness will spin out to something else if the immune system activation isn't treated.

 

[Hip]

@Hip in my case it was not an assumption, I was tested and found deficient, my doctor would have never have rx'd it for me.

Even if there is some vitamin or mineral deficiency, this still does not necessarily imply that the benefits of very high doses arise from rectifying that deficiency.

For example, in a person who has magnesium within normal healthy ranges, there is not enough magnesium in their blood to have any significant effect on blocking the NMDA receptors. It is only when you use very high doses of magnesium (either through injection or by applying magnesium cream transdermally to your body) do you start to get these NMDA-inhibiting effects.

The NMDA-inhibiting effects do not come from rectifying a magnesium deficiency, but from the fact that you use very high doses of magnesium, where these NMDA-inhibiting effects appear.

Another example would be very high dose vitamin B12 hydroxocobalamin. In high doses, hydroxocobalamin has a significant nitric oxide scavenging effect, which might lead to some benefit (or might have some negative effects). However, that nitric oxide scavenging is not part of the normal vitamin functions of B12, but is a metabolic effect over and above B12's normal functions as a vitamin.

 

[Dufresne]

Ron speculated that maybe there are too many metabolic deficits to start up again. If the treatment doesn't cover all metabolic deficits maybe a relapse is inevitable.

At least that is one angle to look at it. The other angle being that the body knows what it's doing, and that we need to remove the threat that forces our body into a state of hypometabolism in order to survive.

I can just about guarantee you it's the latter.

 

[Ben H]

This is so great and thanks to all for opening this up for international patients. Would the costs be under $500 roughly do you think? I need to get saving. Thanks so much again.

Hey @rosie26

Id advise to save-your figure is in the ballpark (including shipping) but need to have an update from Laurel before I can start the thread. We are not there just yet.

Usually it is a very expensive test (For example Gordon Medical@$1500 is not a rip off for the technology) but Laurel has managed to reduce the cost massively. She is extremely impressive and frequently amazes me. I am so glad she is working with Prof. Davis, she is rediculously intelligent as well as very proactive in all areas of ME/CFS.

Someone we absolutely need and are so lucky to have on our side.

As I've said I will start the thread when its all ready

B

 

[lansbergen]

The other angle being that the body knows what it's doing, and that we need to remove the threat that forces our body into a state of hypometabolism in order to survive.

That was my goal all along but with an infection that is supposed to be unremoveble that is not easy. The concensus is once infected always infeced.

 

[alex3619]

The hypometabolism can theoretically explain many symptoms. Alcohol intollerance could be simply due to reduced production of aldehyde dehydrogenase, which breaks down alcohol.

... and alcohol is a mitochondrial poison.

 

[rosie26]

Hey @rosie26

Id advise to save-your figure is in the ballpark (including shipping) but need to have an update from Laurel before I can start the thread. We are not there just yet.

Usually it is a very expensive test (For example Gordon Medical@$1500 is not a rip off for the technology) but Laurel has managed to reduce the cost massively. She is extremely impressive and frequently amazes me. I am so glad she is working with Prof. Davis, she is rediculously intelligent as well as very proactive in all areas of ME/CFS.

Someone we absolutely need and are so lucky to have on our side.

As I've said I will start the thread when its all ready

B

Thanks @Ben Howell.

This could be far too much work but it would be interesting if there were a questionnaire sent out with the kit asking what treatments people are taking including supplements, nicotine use etc. Could these show differences/patterns in metabolities? Might be far too much extra work.

Edit. Excuse me if this is the plan and I missed reading it.

 

[Mary]

why is there alcohol intolerance?

For me, my liver was overloaded with toxins - apparently from heavy exposure to chemical solvents in a job when I was young, and many years later (12 years ago) I did a liver detox and started taking milk thistle, and now can tolerate alcohol with no problem - in moderation of course! also, glutamine reduced my sensitivity to alcohol so I can have a couple of glasses of wine now with no problem, whereas 12 years it would make me sick for several days.

 

[Sasha]

This could be far too much work but it would be interesting if there were a questionnaire sent out with the kit asking what treatments people are taking including supplements, nicotine use etc. Could these show differences/patterns in metabolities? Might be far too much extra work.

Edit. Excuse me if this is the plan and I missed reading it.

I hope there'll be a questionnaire to establish whether people have been formally diagnosed - or at least something that ensures that when our results are pooled, we'll know what kind of patients we're talking about and whether some need to be excluded from analysis (I'm assuming the results will be used as part of a study).