Thiamine

For years I have read about thiamine, and thiamine deficiency, in ME. Thiamine deficiency is known to cause many symptoms that are similar to ME. There are a few stories of people improving with taking thiamine injections. Here is one story. There are others, enough to make me wonder more than once over the past few years of the need to check for thiamine deficiency.

In the search for information about hyperacusis I came across this fine article by Melody O'Beau, written, I presume, years ago. In it she relates her experience with a rare metabolic disorder that short-circuits thiamine being taken up and used by the body. It is not so much the amount of thiamine in the blood, but more the "functionality" of thiamine in the body. This functionality is low, presumably the result of a missing enzyme. Melody postulates, in her case, that this is a mitochondrial defect. Coincidentally, a few months ago, Dr. Joseph Brewer handed me a copy of this same article (of which I was aware) but this "reminder" stirred my interest enough to finally pursue the functional thiamine test (for my daughter) suggested in Melody's blog.

This test is call the transketolase test and can be done for $1oo at the King James Medical Laboratory in Westlake, OH (1-800- 437-1404). The lab needs two blood vials, one ambient, one frozen, both shipped overnight. They give two result - one, a baseline blood level of thiamine, and two, a level of the functionality of thiamine under TP provocation. Results over 17% indicate poor functionally of thiamine - and the need to raise thiamine levels, most likely through injections. Results of raising thiamine can be dramatic.

Dr. David Bell writes about this low thiamin functionality in his Lyndonville News.

"Full thiamine deficiency is rare because of generally good nutrition, but some persons have a defect in the enzyme system that uses thiamine and as a result have dysautonomic symptoms. This can be detected with an erythrocyte transketolase index, where thiamine pyrophosphate (TPP) stimulation test greater than 14% demonstrates thiamine deficiency. The illness, caused by an enzyme abnormality, can be effectively treated by giving very high doses of thiamine which bypass the defect."

People with this situation have a difficult time raising thiamine with oral supplements. In this case, they take thiamine injections on a daily or twice weekly schedule. The injections can range from .1 ml to 2ml depending on the patient's particular need, which is determined by trial and error.

Thiamine function deficiency has been postulated to cause fatigue, muscular and sensitivity issues. The following bit of information appears on various sites: "Vitamin B1 (thiamine) deficiency produces optic nerve dysfunction". A noted mitochondrial researcher wrote to me, "The functional thiamine deficiency is an important finding as vitamin B1 is needed to get magnesium into cells. In muscle ATP always works as a complex with magnesium so correcting intracellular magnesium and factors that affect it like thiamine status is important."

From another dysautonomia study can be found this: "In spite of its largely unknown action TTP deficiency may play an important part since it is synthesized in mitochondria, supporting the conclusion that thiamine is an important nutrient where there is mitochondrial disruption."

Thiamine deficiency falls into the realm of something that is clearly identifiable and "something that is treatable". These are categories that escape ME patients except in rare instances - like Hashimoto's thyroiditis.

The internet is quite an amazing place to gather information. In this case the "trip-switch" information was written up quite a number of years ago by a seriously involved Lyme patient. Years later others are able to benefit from her written testimony/experience. I have communicated my appreciation to Melody herself, and noted the usefulness of this article written long ago.

Mitochondria

Recent events have gotten me to focus again on mitochondria and its relation to ME. None of the following is presented as medical advice or guidance. I am not a doctor and I do not want to be one. On the other hand, it is worth noting that those with ME are "on their own" when it

comes to medical diagnosis and treatment. The situation for ME sufferers is worse than the 19th century, when physicians at least would ply their trade.

Dr. Sarah Myhill's website, perhaps the most extensive ME website on the internet, has ample information on the critical role that mitochondria play in ME. It is a great starting point. Another informative article is by Dr. David Bell, and can be found in his Lyndonville News here. Dr Bell, an excellent clinician trying to find answers, has had a long-standing interest in the role of mitochondria in ME.

Various clinicians - Dr Joseph Brewer, Dr Sarah Myhill, Dr Paul Cheney - believe that mitochondrial irregularities play a part - perhaps a very large part - in ME/CFS. You can read an article by Dr. Myhill here. In this article Dr. Myhill outlines how mitochondrial failure plays such a very big role in ME. (Incidentally not everyone has caught on to this idea.)

Dr. Myhill collaborated with Dr. John McLaren Howard and Dr. Norman Booth in an important study published in January 2009. This paper, which can be viewed here, was presented by Dr. Booth at the IACFS conference in Reno, NV in 2009. A short article on these three researchers is available here.

Dr. John McLaren Howard is a real unsung hero in ME research. Dr. Howard co-founded Biolab in London (with Dr. Stephen Davies). Prior to retiring from Biolab a few years ago, Dr. Howard pioneered some very important testing in the area of mitochondria and ME. He has continued to do these tests at Acumen lab in Cornwall. His son Mark continues to work as Manager of Biolab.

Dr Myhill's website gives a good explanation of what Acumen is looking for in their testing.

The test itself is relatively easy to do. I believe my daughter was the first person from the US to do this test, back in 2007. In crude terms the test measures ATP function (the rate at which it is recycled into cells) and the efficiency with which ATP is made from ADP. Further testing looks at various blockages to the transport of ATP and ADP. Here is an example of an ATP results page:

The blood test requires one heparanised and one EDTA tube, shipped ambient via Fedex to Acumen lab in the UK. USA Fedex shipments have to be sent to Acumen labs, c/o Cameras Plus, 17A Gold Street, Tiverton, Devon UK EX16 6QB. The samples have to be shipped "international priority" which will get them to Dr. Howard in 48 hours. They need to be shipped in an insulated pack with the proper paperwork. Fedex will help with the international shipping label. They will not help with the packaging in any way. A triplicate copy of an international waybill needs to be filled out in a specific way, the process of which can also be learned through the Fedex site. If the blood is drawn into the correct tubes, if the shipment is packed according to international Fedex procedures, if the paperwork is filled out properly, the sample will breeze through customs to Acumen labs in a timely fashion. Some care has to be taken in these matters.

The test can be done through Dr. Myhill. She will write a particularized summary that is very useful. She has seen hundreds of these tests and works closely with Dr. Howard.

Rich van Konynenburg's thoughts (always welcome) on mitochondria and ME can be seen on the Phoenix Rising forum. This ME/CFS information site was founded by Cort Johnson. This website provides us all with much needed information and connections - and is an ongoing, necessary resource. Not a day goes by that I do not read it.

The big question is, once the specific mitochondria problems are identified, can these deficiencies be rectified? As with all matters with ME, the proof is in the pudding. It is trial and error - but at least the patient has a target, and a means of measurement and tracking. Many people have been helped by this test and its targeted treatment.

Is it possible that such sharp and diverse minds as Myhill, Cheney, Howard, Booth, Bell, and Brewer can be gathered around a subject - mitochondrial failure - and that there be nothing there? No, I do not think so.

The interesting thing about mitochondria dysfunction or illness in general is that it is viewed as a disease - as opposed to ME, which is viewed as nothing. At the moment there is broad attention being paid to mitochondrial diseases and mitochondrial dysfunction, and this reality opens up an entire area on to which ME might be able to piggyback. One of the greatest hopes for ME patients is that something will slop over from another research area - HIV, cancer, mitochondria, MS, stem cell - and inadvertantly land in the lap of ME.

Several national mitochondrial disease websites can be viewed here and here.

The proposed intervention, tailored by the physician to the particular needs of the patient, revolve around what is know as the "mitochondria cocktail". Dr. Myhill stumbled upon mitochondria support through the research of Dr. Stephen Sinatra, the American metabolic cardiologist. The mitochondrial cocktail consists of various supplements. These include NAD, Co-Q10, d-ribose, carnitine, Idebenone, b2 (riboflavin), b1 (thiamine), creatine, and magnesium and b12 injections. A good webpage that covers some of these supplements is this Medscape article. Each patient's cocktail is particularized - either by a physician or by trial and error. The experienced patient, whether with lyme or ME or both, will be able to tell what works for them, and what doesn't, thus devising their own balanced protocol.