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Old 09-20-2005, 06:54 AM   #1
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Post MCS Info

Hello,

I hope all is going well with everyone. My wife has MCS, so I was researching MCS and ran across a review of various treatment methods and how effective they were. The review was by Alison Johnson in 1997. Of the 172 methods tried, there were 3 where everyone was helped and no one was harmed nor had no affect. One of those methods used Atropine. Now indeed, of the 351 people who had responded to the questionnaire, only 7 had tried this method. Still there were numerous other methods trialed with a small group of people and had no affect or were harmed by the treatment. So when one popped up where everyone was helped, I had to take notice.

I researched Atropine and found that it is used to treat organophosphate poisoning. Organophosphates are neurotoxins, and are used in agriculture. This led me to research neurotoxins, which lead me to an article about Dr. Shoemaker and Chronic Neurotoxins mediated illness theory.

Another more recent review was done by Pamela Gibson, Amy Elms, and Lisa Ruding. This was done in 2003 using 917 people. A 3rd evaluation was done by Leonard Jason using 305 patients in 1995. Using these 3 reviews at least gives me some idea what has the best chance at working and what does not. They also gave me some ideas of things to further look into. I hope this info is useful to some of you.

The article about Dr. Ritchie Shoemaker was by Patti Schmidt. Dr. Ritchie Shoemaker believes MCS, FM, and CFS are caused by Neurotoxins. It is fairly long so I’ll do my best to summarize it.

In the late 90’s a number of his patients had symptoms similar to CFS. It just so happened to coincide to sick fish in a local river. Upon further investigation, he found the patients all worked or played in the river. Toxins from a one-celled dinoflagellate, Pfiesteria piscicida, apparently infected the people. But their body’s systems could not rid themselves of the toxin.

He collaborated with Dr. Hilton Kenneth Hudnell a neurotoxicologist. He believes that neurotoxins form different possible sources; mold, ticks, spiders, agricultural chemicals, bacteria, viruses, and other sources, get into the body and the body can’t rid itself of them. They eventually determined a test for neurotoxicity and a way to rid the body of the toxins. The test is a visual acuity test. As I understand it, the neurotoxins affect the eyesight and this test can identify this.

He used Cholestyramine, a cholesterol lowering drug to remove the toxins. Again, as I understand it, the drug is taken on an empty stomach, which allows the drug to bind to the toxin, which allows it to be removed from the body. Otherwise, it just stays in the body and causes the chronic affects. He has apparently had some good results with curing people with the MCS, CFS, and FM.

So, now that I’ve gone over all of that. Has anyone got any experience with using Cholestyramine, this theory, or the doctors? Has anyone got more info of any kind on this?

And As long as I’m going over things, there was another article by Martin Pall called “Multiple Chemical Sensitivity – The End of Controversy”. He is a biochemist who had MCS and did research to determine the link between it and Nitric Oxide. I found that article sometime back and finally found the treatment protocol based on his work. It is referred to as the “Ziem/Pall Protocols for Neural Sensitization”. He teamed up with Dr. Grace Ziem to develop this treatment.

The final item I’ll bring up is the EDP or LDA treatment for allergies. We’re also considering that.

So, does anyone have any experience with The Ziem/Pall treatment protocols. EDP/LDA, or Dr. Shoemaker’s treatments? If, so, how did they work out.

Keep happy, hopeful, and have a good day.

 
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Old 09-21-2005, 12:50 AM   #2
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Re: MCS Info

Thank you so much for your informative post! I don't know if you read the message directly below yours, but I have been on Cholestrimine. After about 3 weeks my digestive system was so screwed up that I had to stop. My MD treats two other patients with this drug and they both had digestive problems but those were resolved with digestive enzymes. The enzymes did not help me.

I continue my quest. Please post any other info you come across and I'll do the same.

Did your wife try Cholestrimine or any of the other treatments you mentioned?

Lu

 
Old 09-21-2005, 09:46 AM   #3
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Re: MCS Info

Hello Lu,

Thanks for the reply.

We have not yet decided on which course of treatment to try. She tried the Visual Acuity Test for neurotoxins on line and it came out negative. That's both good and bad news I guess. It took her years before sh decided to turn me loose on this. She's afraid of any treatment that may make her worse. She'd been there before and doesn't want to go through that again. I didn't know her at the time. But she has finally agreed to let me research it, discuss it, and figure out which way to go. I'm still considereing a consultaion with Dr. Shoemaker. Proceeding with caution. :-)

BTW, did you try a lower dose of the Cholestyramine? Perhaps if you started with a quarter of the dose it might allow your system to adjust to it. just a thought. Keep trying, there are plenty of other options out there.

WW

Last edited by astroh2o; 09-21-2005 at 09:47 AM.

 
Old 09-22-2005, 01:27 AM   #4
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Re: MCS Info

Yes, because I am soooo sensitive I did start with a lower dose. I tried everything to take it because I felt that it was helping. Unfortuately, it really messed up my digestive system.

I'm not sure of all the options that exist and I am presently too tired to proceed. I'll probably not pursue treatment for another 6 months or so. I'm worn out!

Lu

 
Old 09-23-2005, 01:39 AM   #5
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Re: MCS Info

Lu,

May I ask what you mixed the Questran with? My pharmacist reccommended grape juice. I'm trying to find out what Dr Shoemaker recommends. And what foods were you eating? When it's was time to eat. What was the treatment protocol you were given? Time frame before meds? After, the time frame before eating or taking meds?

Are you taking NADH or any meds/ supplements to help boost your energy level? Food plays a big part in boosting your energy level too. Are you experiencing CNS hyperactivity with your symptoms?

Did you try taking it with yogurt or a smoothie? Just wondering if I should try? And continue taking diflucan and a antibiotic to help with the viruses and yeast issues?
goodnight... I should be a sleep, uvm



Quote:
Originally Posted by lu55
Yes, because I am soooo sensitive I did start with a lower dose. I tried everything to take it because I felt that it was helping. Unfortuately, it really messed up my digestive system.

I'm not sure of all the options that exist and I am presently too tired to proceed. I'll probably not pursue treatment for another 6 months or so. I'm worn out!

Lu

 
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