Who else is trying the Myhill/mitochondrial/stone age approach?

[Brixtonian]

Hi everyone, this is my first post here. I hope everyone is having a positive week and making progress!

Here in the UK I get the feeling that there are quite a few doctors and patients following Dr Sara Myhill's path to treat ME/CFS/SEID. I'm doing this under the care of Dr Franziska Meuschel in London and I would love to share info and tips with people all over the world who may be doing something similar.

Here's some background about some British institutional quirks: Meuschel, like Myhill, describes herself as a practitioner of nutritional and environmental medicine. Also like Myhill she started out as a general practitioner (family doctor) in the UK's taxpayer-funded National Health Service, but she quit the NHS and went into private practice because the NHS doesn't recognise nutritional or environmental medicine as 'approved' specialisms for doctors, doesn't accept that ME/CFS/SEID has a physical cause, and only approves CBT and exercise as proven treatments. No other treatment is up for discussion. I get the impression that the US has a few parallels, in that doctors don't study nutrition all that much at medical school, so if you go to your family doctor and ask about diet and supplements appropriate to ME/CFS/SEID, you'll probably get some blank looks.

Of course every patient is different, but I think it's fairly safe to sum up the 'Myhill way' as to take the ATP profile test, get diagnosed with mitochondrial failure, follow Myhill's variant of the stone age diet (which is pretty strict) and take a package of supplements, typically Coenzyme Q10, L-Carnitine, D-Ribose, Niacin, B Complex, D3 and Magnesium.

So, if anyone has read this far, have you any experience with this approach?

 

[Edie]

Hi everyone, this is my first post here. I hope everyone is having a positive week and making progress!

Here in the UK I get the feeling that there are quite a few doctors and patients following Dr Sara Myhill's path to treat ME/CFS/SEID. I'm doing this under the care of Dr Franziska Meuschel in London and I would love to share info and tips with people all over the world who may be doing something similar.

Here's some background about some British institutional quirks: Meuschel, like Myhill, describes herself as a practitioner of nutritional and environmental medicine. Also like Myhill she started out as a general practitioner (family doctor) in the UK's taxpayer-funded National Health Service, but she quit the NHS and went into private practice because the NHS doesn't recognise nutritional or environmental medicine as 'approved' specialisms for doctors, doesn't accept that ME/CFS/SEID has a physical cause, and only approves CBT and exercise as proven treatments. No other treatment is up for discussion. I get the impression that the US has a few parallels, in that doctors don't study nutrition all that much at medical school, so if you go to your family doctor and ask about diet and supplements appropriate to ME/CFS/SEID, you'll probably get some blank looks.

Of course every patient is different, but I think it's fairly safe to sum up the 'Myhill way' as to take the ATP profile test, get diagnosed with mitochondrial failure, follow Myhill's variant of the stone age diet (which is pretty strict) and take a package of supplements, typically Coenzyme Q10, L-Carnitine, D-Ribose, Niacin, B Complex, D3 and Magnesium.

So, if anyone has read this far, have you any experience with this approach?

D-Ribose gave me my leg energy back. Before that, I had a hard time walking, so all my cells must also benefit as well. I take 1 tsp 2x a day. What dose does Dr. Myhill suggest? Dr. Jacob Teitelbaum says to start by taking it 3 times a day and if it works for you, you can reduce the dose to twice a day. My Naturopath Doctor also started me on B Complex vitamins for stress and I was showing a deficit in vitamins & minerals because of digestion problems. He recently put me on Niacin no-flush for high cholesterol. I've also started on Ionic Magnesium & Minerals and trace minerals that are 100% absorbable. I also take D3. Edie

 

[Brixtonian]

Hi Edie. Myhill and Meuschel both suggest starting on 1 tsp 3x per day, plus extra doses as and when if you feel you need them. I don't know what the upper limit is. The idea is that as you start to feel better, perhaps after a couple of months, you reduce the number of doses. Here's Myhill's page about D-Ribose - well worth a read http://www.drmyhill.co.uk/wiki/D-ribose

Meuschel also suggests mixing the D-Ribose with coconut oil for increased SCFA (short chain fatty acid) which may benefit the brain. I'm trying to do that but my coconut oil keeps solidifying, which makes it hard to take when I'm not at home - i have to find a way of letting the bottle stand in some hot water.

D-Ribose is a new thing to me and I'm slightly amazed at the instant lift it can give me. It really does seem like a secret weapon. It's very encouraging to know that I can get control over my fatigue with a flip of a switch. I don't know whether it's supposed to be used in the long term. I'm supposed to review all aspects of my treatment with Meuschel after a couple of months.

 

[Remy]

Welcome, @Brixtonian !

I also take most of those supplements. They are a good solid mitochondrial support program.

Personally, I think it's better to get Vit D from light than a pill because it doesn't work orally the same way. It will raise lab values without actually functioning the same as light based D.

Glad you have found a helpful doctor!

 

[Brixtonian]

Hi Remy! Did your doctor diagnose mitochondrial dysfunction and suggest your supplements?

 

[Cort]

I'm doing the stone-age diet and will soon start taking D-Ribose. CoQ10 hasn't done much for me as of yet.

 

[Brixtonian]

Hi Cort. Are you trying one thing at a time in order to identify what difference each thing makes?

 

[Edie]

Hi Cort. Are you trying one thing at a time in order to identify what difference each thing makes?[/QUOTE

I'm doing the stone-age diet and will soon start taking D-Ribose. CoQ10 hasn't done much for me as of yet.

Cort, do you have more energy off grains? I have been off Amino Acids for 2 & 1/2 weeks now for retesting and my energy has severely dropped in the last 2 days. I've removed grains for breakfast and that helps a bit. I also doubled protein and will probably have to eliminate the half 12 grain bagel at lunch and after supper. Four days before my AA test I have to be off all supplements, including magnesium & my natural arthritic one also. I also cannot use Tylenol and it's part of my pain med, so it should be a lot of fun!

 

[Learner]

I take all of the above and more. I've found PolyMVA and NT Factor to be especially helpful for my mitochondria, as well as NADH, which I take sublingually when I'm struggling for energy.

It's important to be treated as an individual, with a program geared to you and your needs. A Genova Diagnostics NutrEval is valuable in determining your nutritional needs.

Make sure you get tested for mold, infections, and heavy metals, which can complicate things.

 

[Brixtonian]

It's interesting that several of you guys seem to be getting treatment for mitochondrial failure but nobody has mentioned getting tested for it or being diagnosed with it by a doctor.

 

[Learner]

I have seen 2 top doctors here in the US and both told me that there's no really good way to measure mitochondrial function and both knew of Myhill and McLaren's test, and commented that, even if we did it, it wouldn't change my treatment any.

I went to the United Mitochondrial Disease Foundation conference last year and went to all the doctor sessions and I agree. One takeaway from that, though, that's not discussed as much here as it should be, is mitochondrial toxicity. They showed heavy metals in mitochondria. Everyone is toxic, and I think its a bigger factor than most people realize.

PolyMVA has been getting toxins out of me that were sequestered in my mitochondria. I know this because they went from being undetectable in my blood and urine to being measurable at acute levels. It took being paired with a strong methylation protocol, curcumin, fiber, and gut binders to flush them out of me.

And the mitochondrial cocktail of nutrients and cell membrane replenishment.

While I wish there was a test, just having more energy and mental ability than I did 9 months ago tells me it's working.

But my immune system is another factor that I'm working on separately, so there's a lot to do.

 

[Brixtonian]

What did you learn about the ATP Profile test at the conference? How did your doctors diagnose mitochondrial failure?

Edit: I had a look at the UMDF site and could only find one mention of CFS, so I'm not sure how relevant the UMDF's take on mitochondrial disease is to someone who's been diagnosed with CFS, or to someone who's taken the ATP profile test and been diagnosed with mitochondrial failure. What a puzzle. What have you been diagnosed with?

What's your impression of the overlap between the scope of the UMDF and the CFS/ME 'world'? And do you think that there might be a 'Not Invented Here' attitude to the ATP profile test because of it being a UK thing? (You have to send your blood here to take the test, don't you?)

 

[Learner]

Not sure where the quote function went, but my answers to your questions are indented below:


What did you learn about the ATP Profile test at the conference?

Not a thing. All the other patients there had various primary mitochondrial diseases, diagnosed by expensive genetic tests, like the one from Courtagen. They were going around asking each other which Complex was impacted.

I have secondary mitochondrial dysfunction, due to toxicity, peroxynitrite damaging my membranes and a lousy Kennedy pathway.

I did learn all about how mitochondria work, how they get repaired, the mito cocktails of nutrients people take, and how toxicity of chemicals and 75% of FDA approved drugs damages them.

Most were clueless on diet and nutritional supplements, and singularly focused on their one bad SNP and not willing to look at methylation and other SNPs, other nutritional deficiencies, toxic exposures, mold, infections, leaky gut, etc.

One of the top experts warned people from giving their children l-carnitine - he used to highly recommend it but apparently got snookered by the highly biased study on vegans vs. meat eaters and TMAO production being linked to cardiovascular disease...(injected l-carnitine is fine, and the real problem is fixing the leaky gut... we need carnitine).

I was just happy to learn my mitochondria might be fixable, that they recycle themselves every 6 weeks or so, and that I should be extremely wary of pharmaceuticals. And I had an interesting chat with a woman from the FDA who encouraged me to look into CFS.​

How did your doctors diagnose mitochondrial failure?

First, if they failed, I'd be dead.

By my symptoms - I definitely seem to have an energy budget, where I crash after X amount of energy expended, with speed of onset dependent on intensity x duration of effort. I can't walk up a hill, not because I'm out of breath or not strong enough, but because my legs start feeling like lead, and I get dizzy and crash.

By my labs. I'm running through vast amounts of B12 and other methyl nutrients, which are used on the mitochondria.

By my SNPs. I have SOD2, PEMT, and SNPs that make me prone to peroxynitrite production.

By my reactions to methyl nutrients, NT Factor, NADH, d-ribose, CoQ10 and carnitine.

I actually did do the Acumen test to see what was stuck to my DNA, which turned up benzoate, so my doctor knows how to send labs to the UK. We just didn't think it would change what were doing. I've read all of Myhill's papers and website - we agree with the theory and I'm taking everything she recommends. I'd just rather spend my money, much as I like tests.
​

Edit: I had a look at the UMDF site and could only find one mention of CFS, so I'm not sure how relevant the UMDF's take on mitochondrial disease is to someone who's been diagnosed with CFS, or to someone who's taken the ATP profile test and been diagnosed with mitochondrial failure.

Like I said, we'd be dead if our mitochondria had failed. And in really bad shape if over 50% are impacted. UMDF's take is that if you've had symptoms all your life, go to one of the 3 genetic testing companies and get tested.

The rest of us have secondary mitochondrial dysfunction - we acquired it through environmental factors, in some cases assisted by faulty pathways due to bad SNPs. Our best hope is to fix them before the damage is too great...many diseases are due to damaged mitochondria.

The ATP profile is like looking at the contrail of an airplane. You can see it, but you can't see the mechanics that caused it.​

What a puzzle. What have you been diagnosed with?

ME/CFS, by OMI.​

What's your impression of the overlap between the scope of the UMDF and the CFS/ME 'world'? And do you think that there might be a 'Not Invented Here' attitude to the ATP profile test because of it being a UK thing? (You have to send your blood here to take the test, don't you?)

UMDF is focused on patients with genetically-caused primary mitochondrial disease. Some families have had multiple children die at very young ages due to these inborn errors. Their focus is on fixing broken pathways to help their people survive.

Fortunately, most of us don't fall into that category, though some may. There's one well known patient in PR who is going through testing now, and seems to have it.
The mito docs do somehow measure function. I'm not sure how, but I saw graphs similar to Myhill's in the presentations.

My naturopath will and has sent tests to the UK, Germany, Greece, and all over the US. He is well connected, goes to conferences all over the world, and is happy to run any test I want, though we discuss the possible usefulness and I have to pay for them.

MDs in my area, a major US city, are arrogant and can't even read the labs I have properly, even standard labs (like TSH!), much less knowing what to do with something exotic. So, I think it highly depends on your doctor.

I suppose the ATP profile would be nice to do to track progress, but my symptoms and other voluminous lab work do pretty well.
​

Hope this helps...

 

[Remy]

Hi Remy! Did your doctor diagnose mitochondrial dysfunction and suggest your supplements?

While I did see a fairly well known mitochondrial specialist, she was less than helpful (to say the least).

I did do most of the testing she recommended eventually but I think that given the high oxidative stress levels and wonky intracellular calcium issues that have been shown by other research, it's pretty much a given that we have mitochondrial dysfunction in this population. So I'm not sure I would recommend spending a lot of money on testing a given, especially since it doesn't appear to have a genetic basis.

As far as the supplements, they are things I found almost by accident on my own in the late 90s during my first serious relapse. I've basically taken them since that time to one degree or another. Now I'm taking them regularly and at higher doses than I did say, 10 years ago.

 

[Hip]

It is interesting that Dr Myhill's stone age diet is quite similar to the no amylose diet employed by Dr Ritchie Shoemaker to lower MMP-9 (in patients with high MMP-9).

Lowering MMP-9 is an essential part of Shoemaker's protocol to treat mold- and biotoxin-induced illness (an illness which Dr Shoemaker calls chronic inflammatory response syndrome, or CIRS), and in fact @Ryan recently mentioned this no amylose diet as being a key part of his recovery from CIRS.

Amylose is found in grains like wheat, barley, oats, rye and rice, as well as roots and tubers and other vegetables that grow underground, including potatoes, sweet potatoes, beets, peanuts, and carrots. So these are avoided on the no amylose diet. And such grains and high carbohydrate vegetables like potatoes and sweet potatoes are also avoided in the stone age diet. So the stone age diet is automatically a low amylose diet.



Dr Myhill does not really provide a great deal of scientific rationale for her diet, apart from detailing the problems that gluten and dairy products may cause (although she may have her own scientific observational evidence that it does help some ME/CFS patients). But looking at this diet from the no amylose perspective, perhaps one of the reasons a stone age diet (presumably) helps some ME/CFS patients is because it is a low amylose diet, and thus able to lower MMP-9.

The reason why high MMP-9 may be problematic in biotoxin-induced illness is explained here.

For Shoemaker, biotoxin-induced illness does not just mean mold illness, and illnesses induced by environmental biotoxins like ciguatoxin, blue-green algae and other harmful algal blooms, but also potentially includes biotoxins created by chronic infections within the body, such as Borrelia or Babesia infections (although there is less evidence for such infections creating biotoxins).