The following is an update on mitochondria and mitochondria testing in ME/CFS, a kind of overview as I see it. None of the following has to do with "Science", say, as practiced by Dr. Lipkin. Instead it fits more into the category of what Dr. Shoemaker would call "desperation medicine". I prefer myself to call it 19th century medicine, epitomized by this: "here, try this".
I do not pretend to be interested in science - especially relative to ME/CFS. However, real science activity in other areas - the immune system for instance, or gut ecology - is of great interest to me. I absolutely believe that something helpful will "slop over" into "my illness area" from other illnesses. This is my view and I work accordingly, trying to calculate the odds of any particular treatment, knowing that all treatments are experimental ("non-scientific") - and a potential threat. No one can convince me though that "my chronic illness" does not involve mitochondrial dysfunction.
Dr. John McLaren-Howard started Biolab in London many years ago. He has always been a real hero to me. When he retired, he formed the small lab Acumen lab in Cornwall UK. (I have always imagined Acumen to be in Dr. Howard's basement - or garage.) Dr. Howard has continued doing various tests that he began at Biolab. Principal among these is a mitochondrial profile test (examples are at the end of this post). Dr Sarah Myhill discusses the mitochondrial profile test here. Dr. McLaren-Howard offers other mitochondrial tests - translocator protein, DNA adducts, cell-free DNA, Cardiolipin studies in mitochondrial membrane, blood metallothionein studies, and toxic effects studies. All these tests give insight into the working of the mitochondria.
Dr. Howard has worked with Norman Booth and Sarah Myhill and published various papers on his mitochondrial testing, as it relates to ME/CFS patients. A 2009 paper can be found here. Here is another important paper from 2012.
I wrote about this mitochondrial test in 2011 in another post on this blog, and also here a year later.
For a fee, Dr. Myhill will write an analysis on the test result and suggest various treatments. The treatments that she suggests to increase mitochondrial function are well known and can be found here and roughly parallel what in the larger world of mitochondrial illness is known as the "mitochondria cocktail". This includes co-Q10, acetyl-l-carnitine, d-ribose, NAD, creatine, and magnesium. I think it is fair to say that great weight is put on magnesium.
Often magnesium is found to be low in ME/CFS patients and this is one element that Dr. Myhill says can be corrected through sub-Q magnesium injections. (I would appreciate hearing a conversation between Myhil and Cheney on this subject.) Tests at Quest or Biolab can be done on coQ-10. Status of blood levels of carnitine and NAD are part of the basic Acumen test. The basic test covers ATP profile, SOD, Cell free DNA, NAD blood levels, and Carnitine blood levels.
Anecdotally, various items can be altered with supplements. Blood levels of coQ10, carnitine and NAD can be improved. What this means clinically is another matter.
A third paper of the collaboration, emphasizing treatment, can be found here. It indicates that a majority of patients improve with supplemental treatment. I myself have found that the test can be normalized with aggressive treatment. In the third paper published by Myhill et al, patient betterment was achieved, indicating clearly, as in my case, that mitochondrial normalization (via this test) is helpful.
Dr. Paul Cheney might take a slightly different view of the matter of mitochondrial treatment. He might express that "front-door" treatment of the low measurements of carnitine and co-Q10 is ineffective, and indeed perhaps counterproductive. Dr. Cheney believes that mitochondrial dysfunction in ME/CSF is a self-protective down-regulation and has to be dealt with carefully. This is a fantastic idea and certainly possible. Dr. Robert Naviaux holds similar views with his "playing dead" thesis.
Dr. Cheney himself would perhaps treat mitochondria with high- dose hydroxocobalamin B12, frequent S/Q magnesium injections, transdermal creams or sprays. It is his belief that magnesium in these patients is constantly leaking out of the mitochondria and needs constant replacement. Dr. Cheney might also suggest Isoprinosine (Inosine) and Klonopin. Mitochondria have a klonopin receptor.
Dr. McClaren-Howard and Dr. Derrick Lonsdale, now retired, would suggest thiamine injections or supplementation with an active form of thiamine, as found at Our Kids. Dr. McLaren-Howard would suggest that thiamine is necessary to get magnesium into mitochondria. A transketolase test can be done at King James lab to determine active thiamine levels and the presence or not of a blocking enzyme. This is not an unimportant detail. (Actually King James lab has closed now. Life goes on.)
Dr Joseph Brewer tested PQQ on a number of his patients several years ago, looking to increase mitochondrial function. He also told me about Dr. Richard Boles, who is medical director at Courtagen Life Sciences, a mitochondrial research company. This is another level of mitochondrial research testing and perhaps the wave of the future. Current prices for testing put it far out of reach.
And then there is Terry Wahls. I first wrote about Terry Wahls in 2009 on this post. Dr. Wahls recently published a book on her mitochondrial diet, which is a great elaboration of her first book, Minding My Mitochondria. Various ME/CFS patients gain physical strength in taking on her diet, including daily bone broth, seaweed, and fermented foods. Again there is very little that one would call science here and the treatment improvement is only part of the larger picture.
LRT - lipid replacement therapy
The recent ME/CFS conference in SF featured a poster paper of Dr. Garth Nicholson on lipid therapy for mitochondria. Dr. Nicholson has been working in this area for some years. It was interesting to see Dr. Nicholson and Dr. Cheney discussing Dr. Nicholson's poster paper. Here is a recent article on Garth Nicholson's ideas about LRT - or lipid replacement therapy. Dr. Nicholson has made presentations at various conferences promoting his research and treatment into phosphytidyl lipids, especially NT factor. Dr. Nicholson was certainly telling Dr. Cheney how effective NT factor was - and that it really did get into the cell membrane for repair.
Differing with this and giving a second argument would be Patricia and Ed Kane, both of whom have long advocated a separate phosphytidyl lipid treatment, mostly involving IV infusion. This treatment involves their proprietary phosphytidylcholine (PC), sold at bodybio. More recently they have moved into liposomal or microsomal phosphytidylcholine treatment, which proves to be effective. Here is a video of Ed Kane speaking on phosphatidylcholine therapy. It is a winner.
All of the above are different approaches to "feeding the mitochondria" - and improving the function and the number of mitochondria.
Recently I received the heads-up from my friend Nancy Rouch about a mitochondrial lecture by Dr. Robert Rountree, chief medical officer of Thorne products. While this is one long advertisement for various mitochondrial supplements, it does present interesting information. (This lecture will be available for viewing until the end of July.) Dr Rountree suggests the "usual suspects" - or "foods" - for mitochondria - magnesium, co-Q10, acytel-l-carnitine, creatine. He also adds these items: sulforaphan, green tea polyphenals, berberine, quercetin, cucurmin, resveratrol, pterostilbene, melatonin, NAC, and ketogenic amino acids. He spends a significant amount of time on NR - nicotinamide riboside, a precusor to NAD. What he says about NR is quite impressive. NR can be purchased from Thorne as NiaCell and is a proprietary formula developed and marketed by Chromadex. It is not cheap.
Important research is being done on Nicotinamide by collaborating groups in Switzerland and at Weill Cornell. A significant study was published in 2012.
I would be remiss not to mention all the information and discussions on mitochondria function in ME/CFS on Phoenix Rising and Healthrising. Just search for mitochondria and start reading. The internet is an amazing resource - and these sites are just great.
All these suggestions have to be approached carefully and are entirely dictated by trial and error. To me, strictures and dogmas are not particularly welcome. It is well known that each ME/CFS patient responds individually to any particular treatment. So one must work carefully. Taking things slowly, over weeks and months as opposed to days, is often helpful, setting the goal of building a long term framework. This is a one on one game. Incidentally this is not medical advice. I am not a doctor and I certainly do not want to be one, never did.
Here are the first and second page results of this Mito Profile: