Letters from the SCD support group: Carl W. Tuttle: Chronic Fatigue Syndrome

This letter is a follow-up to a previous letter that I sent to you posted in the "Letters From the Mailing List" 1997  #16 Gottschall's Diet.  I have attached emails sent to doctors, professors and individuals involved with Chronic Fatigue Syndrome which I believe to be interrelated to intestinal dysbiosis and similar bacterial microbes causing inflammatory bowel disorders.
Fortunately for me I was introduced to a potent probiotic which complements Elaine's diet.
A lifetime of loose and frequent stools has been totally eliminated. The beneficial bacteria introduced to the intestinal environment are synthesizing the vitamins and minerals that I previously wasn't absorbing. My energy level continues to improve and I am now on a treadmill thirty minutes every morning. The color has returned to my skin.
If you or anyone reading this letter would like a doctors explanation for what I have experienced please email me at:  ctfutures@aol.com    and I will send you an audio tape by Dr.James T. Reese with a professional viewpiont of this probiotic.  I have sent a copy to Elaine Gottschall.

What I had to go through to get to this point is as follows:
 

[Carl Tuttle]  Dear Tim,
I thought I would keep you in the loop.This is a recent letter
sent to a friend who has CFS.
Im doing great!
Carl
 
 
 

Jan 6, 1998

I was diagnosed with Chronic Fatigue Syndrome in May of 96.  Not waiting for someone to find a cure for this illness I embarked on a one year research project on my own to get to the root of the problem.

What I have uncovered is as follows:

All of my symptoms were a result of an intestinal bacteria.
   -This bacteria feeds on carbohydrates and starches and any sugar whatsoever including fruits
   -Prescription antibiotics while effective in the short term eventually  proved ineffective
   -Natural agents (grapefruit seed extract,black walnut extract,wormwood extract,berberine,
     uva-ursi,ginger extract) all produced die-off which is a feeling of worsening symptoms
     when the bacteria die off in great numbers as toxins are released into the blood stream.

Immeadiate relief came after starting the Gottchall Diet, which eliminates the carbohydrates
and starches that feed this bacteria. The book "Breaking the Vicious Cycle" by Elaine Gottschall
$16.95 at Barnes and Noble, has recipes for individual meals.

Working with a doctor who uses The Great Smokies Diagnostic Lab allowed me to isolate and
identify the bacteria responsible for my illness through a comprehensive digestive analysis
(stool sample). In addition the bacteria was found in my small intestine through a breath test.
After drinking a challenge drink of lactulose breath samples are collected in vacuum tubes
every 15 min for the next two hrs. If  levels of hydrogen and methane gases are detected it is
an indication of the bacteria digesting the sugar. Pathogenic bacteria should not be in the small intestine.

I am convinced that the toxins released by this bacteria cause the brain fog. The liver is overwhelmed
trying to filter out all these toxins and what is circulating in the blood reaches the brain as well.

I have been able to control the proliferation of this bacteria by eliminating its food source through    Elaine's diet.
Through the help of a Naturopath I have changed the intestinal environment so that it is more
acidic and not alkaline. Pathogenic bacteria do not thrive in an acidic environment. I have added    lemon juice(freshly squeezed) and ginger extract along with colloidal bentonite clay ,digestive
enzymes,vitamins and minerals under the guidance of Dr. Jack Larmer N.D.
 .
I no longer have any brain fog
I stay up past 10:00PM
I have one bowel movement per day(no diarrher)
I go skiing with my family
I have NO FATIGUE
 

Find a doctor in your area who uses the Great Smokies Lab (They have a doctor locator on their
Web site) and identify any and all pathogens.
Buy the book "Breaking the Vicious Cycle"
If you don't stop eating the traditional American diet you won't get well!
Find a Doctor of Naturopathy who is familiar with treating the gut
Remember that there are twenty feet of small intestine and it will take time to heal the damage
done and return it to healthy status. Don't get discouraged if you don't see immediate results.
Everybody including myself wants a miracle pill that works overnightŠŠŠ..it just isn't the case with this illness. I am proof that you can beat this devastating illness

Any information provided in this document is not to be considered medical advice.
Iam not a doctor and you should consult a doctor before taking any medicine or natural agents.

The information provided is a true account of my own experience.

Good luck and get well!
Carl W. Tuttle

Research is being conducted at the University of Newcastle in Sydney Australia by Professor Tim Roberts and colleagues who believe that the debilitating symptoms of CFS is a result of changes in the bacteria of the gut. (Reported by Reuters Health Information Services,Sept.9.1997)
 

Dear Tim,

Thank you for responding to my email. It has been difficult at best to get people to listen to me regarding the bacteria theory. Most people are looking for that "magic bullet" (wonder drug)that is a cure-all for this debilatiting illness. The thought that diet and natural agents could control and ultimately eliminate the illness is beyond belief.
Early in this century doctors and scientists were baffled by a serious and lethal illness producing a mysterious rash, diarrhea, schizophrenia-like dementia and death. Most all of these cases were limited to the lower working class and prison population. It was determined that this illness was diet related. A poor diet low in niacin caused the desease known as Pellagra.
Even as people recovered after eating a more balanced diet, the doctor responsible for the discovery at that time was faced with criticism and disbelief.
Since my last email to you I have uncovered yet another situation that I believe is the most important to date. Through my reading I have learned that all intestinal bacteria compete for space and the dominant strains win out over the benificial bacteria when the apple cart has been disturbed either by antibiotics, antacids, viruses, poor nutrition,(too much sugar) etc.
Once those virulent strains sets up shop its next to impossible to reverse the situation and return to a healthy balance. Everything we put in our mouth will have a direct effect on that environment. Many CFS sufferers, myself included, report an improvement while on antibiotics. While temporarily reducing the pathogen in question, beneficial bacteria populations are also being systematically eliminated, forever perpetuating the vicious cycle.

Instead of trying to shoot the bacteria with that magic bullet, why not fight bacteria with bacteria. Not just any bacteria but a specific group designed to devour any pathogen and restore that invironment to healthy status.
I believe that I am now taking the correct combination of beneficial
bacteria in sufficient quantities necessary to reestablish healthy  populations.
I began taking these capsules on Saturday Jan. 10Th and within the hour experienced "Herxheimer reaction" (die-off) lasting most of the morning.
This die-off has been experienced with natural substances as reported in my previous email. This is the first time a group of beneficial bacteria has produced this effect. My past experience with die-off was an indication that a substance was effective. I will keep you informed of my progress.
 
I was unaware of the confrence scheduled in February. After reviewing the site it looks like the who's who of CFS research. I would be interested in their thoughts on what we have discussed.

I will fax test results that you requested from the Great Smokies Diagnostic Lab.
Tim, I am doing well and its by no accident. I spent the last year and a half experimenting  and finally I can honestly say that it has paid off and I feel that this approach is having a lasting effect.

I hope you are well,
Carl W. Tuttle
 
 

>Dear Carl,
>Thanks for the email about your health and its relationship to diet and bacteria.
>Could you send me more info on the bacterial testing and what it showed please?
>We are doing a lot on the role of gut bacteria as you can see from our web page and what you reported is most relevant and exciting.
>http://www.newcastle.edu.au/department/bi/birjt/cpruis/
>Have you been following the conference we are organising for Feb in Sydney?
>http://www.networx.com.au/mall/cfs/meeting
>Cheers Tim

Dear Tim,

I have assembled the documents you requested from the Great Smokies Lab. A total
of nineteen pages will be Faxed to: +61-02-4921-7281   Is this the correct number?
Prof. Garth Nicolson is also interested in the information I have and has sent a list of his recommendations for Gulf War Illness/CFS/FMS treatment. Here is my last email to him:
 

January 26, 1998
 
 

The Institute for Molecular Medicine
15162 Triton Lane
Huntington Beach, CA 92649
Attn:  Prof. Garth L. Nicolson

Dear Professor Nicolson,

Thank you for responding to my email.  There are items of concern in your list of recommendations that I would like to point out.  Please understand I mean no disrespect if I should disagree with your ideas.  I will do my best at explaining why I have arrived at my conclusions through my own experiences.

Carbohydrates and starches are complex sugars which require digestion before absorption.  A damaged or improperly functioning digestive tract cannot break these complex sugars down completely leaving a residue available for fermentation by the pathogenic bacteria.  Eliminating bread, pasta, potatoes, rice, all grains and corn is extremely important.  If these foods are not eliminated the food source is still available for these pathogens to exist.  Simple sugars found in fruits are easily absorbed and don't require the same complex digestive process.  Excessive fruit intake however, will also cause problems with too much sugar.  Cooked fruits are better because the cooking process reduces the sugar content.  The idea here is to starve the bacteria not the patient.  There is plenty of additional food to eat as outlined in Elaine Gottschall's book " Breaking the Vicious Cycle."  Unless you ferment your own yogurt for a minimum of 24 hours the store bought yogurt contains too much lactose, yet another sugar.  I myself drink mostly water.  Fruit juice would introduce even more sugar.  No dried fruits whatsoever because they are pure sugar.  FOS is a sugar as well and not allowed.

The bacteria responsible for my illness produced anemia.  The only combination of beneficial bacteria to date is as follows:  Lactobacillus Acidophilus Bifidobacterium Bifidum, Bacillus Licheniformis, Bacillus Subtilis, Lactobacillus Lactis, and Lactobacillus Bulgaricus.  The above mentioned combination actually produced Herxheimer reaction and returned the pink color to my skin.  Additional capsules include Lactobacillus Plantarum and Lactobacillus Salavarious.

I am convinced that this illness originates in the gut and given an opportunity it will travel throughout the entire system.  Starving this pathogen has produced the only lasting results.

Sincerely,
 
 

Carl W. Tuttle
 

Professor Roberts,

I meant to send you this email as well:
 

Subj: Re: cfids
Date: 98-01-08 21:56:36 EST:
 

Dear Glo,

Although the bacteria may originate in the gut it will travel throughout the entire body causing a multitude of symptoms. The bacteria found in my gut (citrobacter frundii) was responsible for pneumonia and recurrent sinus infections not to mention being bedridden with devestating fatigue.
The bacteria is capable of entering the bloodstream through lesions on on the intestinal walls. If I should cheat and eat any carbohydrates,starches or too many fruits the first sign of a relapse is a stiff neck followed by sinus congestion, lung congestion ,fatigue, loose stools, chest pain, shortness of breath, anemia, painful joints and the debilitating brain fog just to name a few.
Symptoms vary from case to case. Advanced stages are far worse than I have experienced , but I was headed in that direction.  If an exclusionary diet can produce improvement its worth trying.

Im sorry to hear about your daughters condition, my daughter is seven years old and I know how important they are to us. If you have any other questions please feel free to ask.

Carl W. Tuttle
 
 

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