LYME DISEASE & MITOCHONDRIAL DISORDERS
By Melody O'Beau
BIG news!! After years of suffering with hyperacusis from neurological Lyme disease and 5 years of online digging I found out I have a rare form of mitochondrial disease that is very vitamin B1 connected. There are something like 43 different kinds of mito diseases. Only "my kind" appears to have major connections with B1. Poet and peacemaker, young Mattie Stepanek who was the "poster child" for the Muscular Dystrophy Association (and frequently on Oprah and Larry King) had another kind of mito disease (mito is grouped into the MD family of diseases). The mitochondria are involved with energy production at a cellular level and the lack of energy to the cells causes malfunctions in any part of the body that needs energy...the brain, heart, lungs, and nervous system are near the top of the list. The cells also often have difficulty absorbing nutrients normally. For more info see www.umdf.org
Did I have the genetic predisposition before Lyme? Probably, but we'll never really know. What I find VERY interesting is the number of people on our on-line mito support group who were initially diagnosed with Lyme, or who started to develop mito symptoms after the stress of their Lyme. There is a total blurring of symptoms between the two and I expect misdiagnosis going both directions. My doc thinks there could well be a connection, perhaps the spirochete organism attacking the mitochondria and causing it to malfunction.
A vitamin B1 deficiency is well documented to have the capability to cause both hypersensitive hearing and hypersensitive nervous system function. Taking extra B1 is still helping me with both these symptoms. I still have some problems with both, though not nearly as severe as before, unless I don't take my daily small dose B1 injection. Apparently I have a rare metabolic glitch, so that I can't absorb oral B1 supplements. Because B1 doesn't store well in the body I must take a daily injection. For that matter, I can't absorb B12 either and have to take weekly injection of that, as well.
Serum vitamin B1 (thiamin) levels CAN be normal, but FUNCTIONAL levels can still be very low if the body can't adequately use the B1. This is true of all the B vitamins. I believe that FUNCTIONAL B vitamin tests are the only valid way to find out if the body is actually USING the B vitamins we are ingesting, in both food and supplement form.
To my knowledge there is only one lab doing the functional B1 testing...called the 2 part transketolase test. This is King James Omegatech Lab in Cleveland OH (1-800-437-1404). It is accredited. I have been able to gain access to the test via my local medical centre lab and insurance has paid. King James Lab Website
The lab first measures the activity of the isolated tranketolase enzyme, the enzyme that requires B1 as its coenzyme in order to function. According to Dr. Joseph Debé, "this enzyme can be measured as a test of vitamin B1 status... If it is low, vitamin B1 insufficiency is present. Additionally, a second test is performed that picks up more subtle insufficiencies. Vitamin B1 is added to the transketolase enzyme and the activity of the enzyme is measured again. A large increase in transketolase activity after the addition of vitamin B1 shows that the enzyme's activity has been limited by a functional lack of the vitamin."
The Metametrix Lab also does functional B vitamin testing, but I've found that their testing protocol does not provide results nearly as specific as those from the King James Lab. Spectracell Research also has a functional B vitamin test panel available, but their tests are considered "experimental" and the last time I checked, my insurance wouldn't pay for them. I believe that the B1 component of the Spectracell test is only a one step test.
One interesting note is the that I've recently read the that cephalosporin family of drugs (of which Lyme drug Rocephin is a member) is known to be an antagonist to vitamin B1. Now isn't THAT an interesting bit of "trivia"!!!
Mito is such a NEW disease (I think it should be called disorder) that there are very few doctors knowledgeable about it at all. It's only been known since the late 80's when the human genome was first mapped. There is a great deal of excitement in the medical community about mito disorders and how knowledge about them may influence treatment of diseases as diverse as Alzheimers and SIDS.
The treatment for the most varieties of mito includes a specific form of CoQ 10 called Q-Gel by Tishcon www.epic4health, and a specific form of prescription Carnitine called Carnitor. Then, additional treatments are tailored to the patients' specific mitochondrial disorder.
In closing, I am doing much better since the addition of B complex with extra B1 as part of my nutritional regime. However, please note that most nutritionists generally recommend that people with normal nutritional requirements should take the ENTIRE B complex, rather than one individual component, so as not to create an artificial imbalance of B vitamins. If you feel this information may be helpful to you, please be sure to discuss it with your doctor. I wish you all well on your own Lyme journeys!
*Reprinted with permission from the author.