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.

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

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

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

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



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

Thank you,

This is confirmation, there is help and intriguing medical advancement on the horizon and getting closer all the time.

I am seeing a Dr Kent Holtorf, who insisted from the beginning (in November 2004) for me to take the test for neurotoxins based on my symptoms...he continued to mention it even after all the extensive blood and lab work he has done. When I took the test back in January 2005, I was negative, however it was my error!! (I do have corrective lenses and my vision is corrected to at least 20/50- I stated 'No' --Only took 9 months to realize!)
My cognitive thinking and brain fog were playing havoc at the time.

My journey with FMS/CFS has been a a roller coaster for the last 2 years. With treatment and time away from work I saw improvement, even days with no symptoms. Back to work the symptoms start up with in the first 5 days, then with every passing week more symptoms appear, the worse I got until I couldn't function at all, my whole body was under attack and I was deathly ill. My husband was ready to hospitalized me at UCSF and request Dr House to see me!! (sshh-grin)

So, instead I went to my doc, Dr Holtorf, who insisted that I take the test again, which I tested positive on August 31 '05, now I have started the Questran treatment protocol, 3 weeks ago. Reading all the info on neurotoxins and reading about sick buildings has been very interesting. I hope that this will be the real dx for me, that FMS/CFS was the misdiagnosis...that I will be healed along with finding the culprit if it's the building where I work. uvm

p.s. there are others I work with who have had the same symptoms, 2 went out on medical leave tried to come back, each time sick again and chose not to return. Along with others who have symptoms and are not being treated yet.

Are you supposed to take the test with the glasses on or off? My wife took the test with her glasses on and it came out negative. We were not very certian about that part.

Thanks,
WW

Hi, my daughter was exposed to chemicals at her daycare if you read the post under asthma we could not figure it out till now. What exactly is this nuro toxin test? Can it be done on a 4 year old? Does it produce accurate results? I belive my daughter was deathly ill due to chemicals and every time I put her back in the school she became lifeless at times. She has been out for almost 2 months. Can we still do the test? and what specialist do you see for this?

thank you so much