Sunday, July 24, 2011
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.
Labels: Dr. David Bell, Dr. Joseph Brewer, King James Medical lab, Lyndonville News, Melody O'Beau, mitochondria, thiamine, transketolase
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After having a severe relapse for 5 years and amongst other things trying a high protein, low carb diet, I ended up in hospital unable to digest anything and with hypoglycemic symptoms. They gave me simple carbs and 200mg of thiamine. I woke the first night feeling euphorically better, put on weight and was discarged two and half weeks later. At home i switched to an easy to digest diet but a year later i'd again deteriated to the point where i was struggling to digest anything. So bought myself some B1 capsules and again instantly felt better. Unfortunealty no doctor has been interested in finding out what my problem with B1 is and i think there would be no chance of getting injections of thiamin in the UK. I find it particularly annoying that i'm having to self treat myself without any doctor support or investigations.ReplyDelete
Hmmmm... Hydrogen sulfide again, this time with thiamine. You would think they were talking about ME/CFS patients, not cows...ReplyDelete
But the article ALSO says that laminar cortical necrosis can by caused by hypoxia.ReplyDelete
That opens the door for a bunch of other possibilities.
Absolutely! And the hypoxia comes from...? Honestly, I just want to interest people in this area, and humor sometimes works... I think this is the right pond to fish in, and my approach is this: let's just get something caught, and then we can worry about whether it is purple, spotted, farmed, wild, or was dropped in from outer space.ReplyDelete
Besides, cows don't digest in the same way as humans, but we might get better quality research if we started mooing...
I have tried for years to tell people about the hypoxia "zones", and they simply refuse to believe it.ReplyDelete
Researchers consider this so unlikely that they refuse to research "the effect", so no real investigation has ever taken place.
I have to TAKE CFSers to these places and let it kick their butts before they believe me.
That has been extremely effective.
I don't want to monopolize this blog with my comments, so I'll be brief-
If you are talking about Lake Tahoe, I would be curious to know more about the weather, a sulfur mine overflowing, the early Elko Wastewater Reclamation Facility and the MTBE in Lake Tahoe.
I saw the same environmental "effect" start up in several locations in the bay area before it moved into the Lake Tahoe region.ReplyDelete
It was always centered on concentrations of microbial organisms.
In other words, MOLD. Erik had mold poisoning, so he thinks that all ME/CFS patients have it as well. And no one will listen to him...maybe because he keeps harping on the same thing over and over?ReplyDelete
Marian, I'd like to hear more about your theory. In layman's terms? You used to post on Phoenix Rising, but haven't seen you there for quite some time...
I read with great interest that a noted mitochondrial researcher told you "vitamin B1 is needed to get magnesium into cells." I have tried finding the source, but the only article I found seemed to indicate that magnesium was necessary to get B1 into cells (http://actachemscand.org/pdf/acta_vol_20_p0771-0785.pdf)
Is there any way you can get back in touch with them and see what they were sourcing?
I have CFS and depression has hit me hard this year with it. I would like to try a trial of B1 and magnesium. How much do you take of B1 and how much of magnesium. And
do you take it morning or night or both, or with or without
food. Thanks for helping .
B1 Test Centre LondonDelete