Cannot say enough about L-Glutamine and Pro-biotics for MC

[Gloria]

Sheila,

I'm so sorry that you have lost your DH. My prayers are with you.

Gloria

[Ginny]

Sheila, so sorry to hear of your loss. I will keep you and your family in my prayers.

Tex, just reading this thread for the first time and I took L-glutamine for months and months in the beginning after reading Connie's success, but with no apparent affect on my MC. However, the diet that I have been on may indicate that I should try again. I will post shortly on my latest visit with my GI and my questions on an immune suppressant.

Love, G

[tex]

However, the diet that I have been on may indicate that I should try again.

That was my thinking, that it would be more likely to be effective after the diet has been in place for a significant amount of time, so that hopefully, all food-sensitivities, (and their lingering effects), have been removed from the diet. That's the way that Connie used it, also - after she had been on the diet long enough that most food reaction antibodies should have begun to decline, and it was time for healing to begin. As long as antibodies are at high levels, healing cannot proceed, anyway.

Love,
Tex

[Stanz]

I have finally transcribed the letters relating to my Grandfathers journey with what surely must have been Johne's Disease (pronounced yo-nees)/MAP.

He had previously been d/x w/a strangulated bowel. These letters are in chronological order, the first coming after he was seen at the Mayo Clinic for a bowel obstruction, which had been troubling him for quite some time. I don't know why he was in South Dakota or who Andrew Anderson is, but assume he must be a relative. At this time, my father, Elmer Norman, was 20 years old and headed for Medical School. His younger brother, 16 years old, was about to drown in Lake Lida, along with 2 cousins while skating on Thanksgiving Day, just about 6 weeks after this first letter was written. My father never got over that.

--------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
MAYO CLINIC
Rochester, Minnesota
October Fourteenth
Nineteen Eighteen

A 246011

Mr. N. Norman
c/o Andrew Anderson
Route Number One,
Brandon, South Dakota

My dear Mr. Norman:

I remember telling you that your trouble was probably due to a cancer of the large bowel and advised you to seek surgical relief. I still feel that this is the right thing to do and that it should be done at once, either here or at your own home. The surgeon, whom you mention, knows about your condition and can have any information from us that he may wish concerning our findings, if he will write us making that request.

Very truly yours,
W.S. Lemon M.D.
wsl-vd
----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

"either here or at your own home"----wow. Obviously everything went to hell after his brother died. His mothers brother had also died the same way, she blamed my father for his death, as he had bought the skates for him. He doesn't have the surgery, he is just living with it because he has a farm to run and a wife in crisis. My father leaves to go to college. Shortly before the second letter is written my Grandfather has an accident. A load of lumber falls on his chest. He goes back to the Mayo Clinic and is still hospitalized when they wrote this letter. My father has left school to come home and run the farm, which he hates. This is what they find:

----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
MAYO CLINIC
Rochester, Minnesota


Clinical Section
Of
Dr. Willis S. Lemon

October Twenty-fifth
Nineteen Nineteen

A-246011

Mr. Elmer Norman,
Pelican Rapids, Minnesota

Mr. dear Mr. Norman:

While making your father’s examination, we found that he has an advancing pulmonary tuberculosis and also evidence of tuberculosis in the bowel.

We advised him to have sanitarium treatment and have written a letter to the Modern Woodmen of America Sanitarium in Colorado, hoping that he may be admitted for treatment.

Very truly yours,
W.S. Lemon, M.D.
wsl-mb

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Six weeks later my Grandfather leaves to go to Colorado. The final letter is written at his discharge from the Sanitarium. I don't know how any of you will interpret this and the spelling errors are as they wrote it, or as best as I could make out from this handwritten letter, so I may not have some "medical terms" right, but my analysis is that he NEVER had TB and maybe some of you w/more medical knowledge can help me to understand it. From my research I think he had MAP, secondary to genetic gluten intolerance. He was a wheat farmer and had dairy cattle.
-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

State of Colorado
}ss
County of El Paso

To whom it may concern

This is to certify that Nels Norman, giving his age as forty-nine, his residence as Pelican Rapids, Minn. and his occupation as Farmer, entered the Modern Woodsmen of America Sanatorium December 9, 1919 and was discharged November 25, 1920.

On admission he was found to have impaired reasonance to the fifth rib and the sixth dorsal spine on the right, and to the third rib and the sixth dorsal spine on the left. Asthmatic rales and rhonchi where found in both lungs, but moist rales could not be elicited. The X Ray report was as follows:

R: Incease of hilus and upper and lower bronchus
L. Increase of hilus and of lung tissues of upper bronchial stem, enlarged heart

The sputum was found positive for Tubercle bacilli on December 10, 1919 and January 30, 1920. Thereafter, it was at all times negative for tubercle bacilli. The urine showed from time to time traces of albumin, or a light cloud of albumin. At other times it showed pus and epithelial cells. The Wasserman reaction was negative. The blood count was normal except for moderate anemia. Analysis of the stomach contents showed a normal reaction.

It was our opinion that Mr. Norman probably had a complicating tuberculous enteritis, but this opinion was never confirmed by X Ray examination.

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

My Father never went back to school. He hated the farm. In January of 1920 the stock market crashed, the Great Depression began, and my Grandfather returned home nearly 14 months after entering the Sanitarium. TB was rampant then, people were dying by the score. My Grandmother was out of her mind. She was afraid of catching TB, she would not let him live in the house. They built a shed that he lived in for nearly nine more years with no human contact. His meals and firewood were brought to him and left on the doorstep and I don't know if he was allowed out to get water to drink and bathe. I can only hope that he conversed with people from a distance and they could afford to buy him books to read. My father's sister goes away to college and family lore is that Lawrence Welk proposed to her and she turned him down. She ultimately marries a minor league baseball player who turned out to be the love of my life and inspired me to coach softball (but she was as mean as her Mom and I never liked her). In 1926 my parents marry, they live on the farm, they have 2 children and one on the way when one morning my Mother is bringing my GF his breakfast and he comes out of the shed vomiting blood and dies at her feet. During all this time, from 1918 when his Dr. recommended surgery for his bowel obstruction, until late 1928, he lived to die of what was likely the bowel obstruction. I cannot imagine nearly 9 years of living like that, without a water heater, without a flushing toilet, without anyone to hold him and love him and it just breaks my heart. My father was a gentle, sad man who hated the farm and went on to father 9 children he probably never wanted. My mother had her own sad legacy before this and is not something I want to share here, but is tragic. It's a miracle we survived. I was a fallopian tube baby, I nearly killed her, I heard this all my life. (forgive the self pity)

So, I got one GS gene from each parent and here's the health history as I know it. My GF died of a bowel obstruction, my Mother died of stomach cancer, her first daughter died of bowel cancer, one brother died of colon cancer and all but 1 of her 10 children have every sign of GS. My nephew, an MD, had a bowel resection in his 40's and both his daughters have Crohn's. I have at least one niece who is schizophrenic and some of the others ain't doing too good either. I cannot get ANYONE, except for my immediate family to get tested at Enterolab. My schizophrenic niece lives with her 81 year old widowed mother and weighs around 300 lbs. And I could just go on. There are only 6 of my mother's children living. Of my 3 older sisters, 2 are crippled with arthritis, I have no contact with 1 of my 2 living brothers, so I have no idea how he's doing, the other is pretty textbook GS and still eats bread, but I love him. And then there's me, the baby, the troublemaker nobody listens to. "There's a drug for that" is how they live, wouldn't want to give up their cookies.

I've got a book in me, if it keeps snowing here I may just start this week. I was happy to get a call from the NP at my PCP's clinic this morning, who had intercepted my messages to my PCP and CNA after I got the dx/w multiple organisms. They were closed for the MLK Holiday today, but open w/o any MD's there, so they let me come in and leave another urine sample so that they will have the results when I see my PCP on Thursday. I am not going to let this go. There has to be a test for MAP and I won't stop until I get it. When I talked to the CNA who called me this morning, she was fully supportive of what I'm asking for, so we'll see.

Your feedback/impressions of what these letters say to you would be wonderful.

http://en.wikipedia.org/wiki/Mycobacter ... berculosis

[tex]

Connie,

Very interesting history. You're right - your grandfather had an incredibly rough life, because almost everyone was scared to death of TB during that period of time, and the tough economic times, really compounded the problem. It appears to me that he initially had TB markers in his lungs and airways, and his spine, and most notably, in the small intestine. Based on some of his other symptoms, the disease was probably affecting other parts of his digestive system, and other vital organs, as well.

Q. What does tuberculosis of the small intestine mean? What are the symptoms? Is it curable? What is the best treatment and precautions?

A. Tuberculosis of the intestine will either cause blockage or ulceration. With blockage the main symptoms are pain, vomiting and distension; with the ulcerative variety the symptoms are mainly bleeding. It is a curable condition. Sometimes especially with ulcerative variety, anti tubercular medicines taken for 9 months will cure this. With the obstructive variety, treatment is also medicines but sometimes the symptoms are so severe that surgery has to be done first to relieve the blockage followed by medicines. While on antitubercular medicines, one must be careful about liver function tests because these medicines can cause abnormality in liver function. While the treatment is going on high residue diet should be avoided. Protein intake should be increased.

http://doctor.ndtv.com/faq/ndtv/fid/100 ... stine.html

Here's some info on abdominal tuberculosis:

http://www.pneumonologia.gr/articlefile ... al_TBC.pdf

Here's some interesting info on a connection with bovine mycobacterium:

Gastrointestinal Tuberculosis: This is uncommon today because routine pasteurization of milk has eliminated Mycobacterium bovis infections. However, M. tuberculosis organisms coughed up in sputum may be swallowed into the GI tract. The classic lesions are circumferential ulcerations with stricture of the small intestine. There is a predilection for ileocecal involvement because of the abundant lymphoid tissue and slower rate of passage of lumenal contents.

http://library.med.utah.edu/WebPath/TUT ... B/MTB.html

You may be interested in some of the information on this site, if you haven't seen it before:

http://www.johnes.org/general/faqs.html

And there is no way to diagnosis a MAP infection in humans, according to this site:

http://www.crohns.org/treatment/diagnosis.htm

Tex

[tex]

Incidentally,

Yes, definitely start writing that book ASAP. Getting started is the hardest part. And don't forget to back up your text files every time you add anything, (and back them up on more than one computer, and/or on a flash drive, as well). Some days you'll write a lot, some days you may add only a sentence or two, some days you won't add anything, and some days, you'll probably rewrite half of what you've previously written, but you'll eventually get there. It can't happen unless you actually start writing, though.

Tex

[Stanz]

Thanks for the feedback, Tex. Earlier in this thread on page 2, I believe, I was originally unsuccessful in posting live links to a couple of articles I found that relate to Naser's study at U of Florida. I went back in a few days ago and corrected in - sort of - you still have to copy and paste this one into your browser for some reason:[/url]http://www.thefreelibrary.com/Reducing+ ... 496611[url]

This is a more recent interview and contains the following:

Post: Do you believe that an infectious agent is a cause of Crohn's?

Naser: Absolutely, I do--at least in two thirds of Crohn's patients I tested. I also would like to focus attention on a possibility of co-infection where Crohn's and ulcerative colitis diseases are present in the same patient, which may lead to a misleading outcome if Crohn's disease symptoms disappear but ulcerative colitis symptoms remain. There is also increasing evidence that some patients with irritable bowel syndrome have MAP infection. Much research remains. I hope that more investigators will study and more resources will be devoted to researching these lifetime diseases.

Post: Is genetic susceptibility also important?

Naser: Absolutely. The latest discovery of two gene abnormalities hinted at the genetic susceptibility of the host and the involvement of the germ theory (possibly MAP or others) in order to develop Crohn's disease. My own take on this is that a host susceptibility may exist in the presence of an additional (defect) adhesive protein expressed somewhere on the gastrointestinal tract. This is complementary to another adhesive protein expressed on the surface of MAP. If such a patient is exposed to MAP, naturally MAP will bind, phagocytosed [consumed] by host immune cells where MAP outsmarts the immune system and starts causing inflammation. More work is needed in order to identify persons at risk, and then alternative measures, such as a vaccine, may be used to block MAP entry to the patient's tissue.

Post: If MAP is present in pasteurized milk, should one just boil one's milk or consume the ultrahigh temperature (UHT) milk?

Naser: We don't know who is at risk. If we can identify who is genetically susceptible to MAP, we can say don't drink milk or stick with UHT milk. The current pasteurization procedure does not completely eradicate MAP from milk. In England and other European countries, they already modified their pasteurization procedure, resulting in significantly improved eradication of MAP. Current literature clearly suggests that a good percentage of U.S. cattle is infected with MAP and that a better and more modified pasteurization protocol is needed.

Boiling definitely reduces the number of viable MAP in milk; however, there is a risk of losing some of the vital nutrients. Heating the milk to a few degrees above the current pasteurization temperature may help in killing more MAP cells.

Post: Have you treated patients?

Naser: My collaborators

Dr. Ira Shafran and Dr. John Valentine in Florida have many patients on different treatment protocols. In an article published in 2003, we reported that almost 70 percent of Crohn's disease patients who were treated with RMAT (rifabutin and macrolide antibiotic therapy--Rifabutin and Biaxin) moved into remission, and many of them are still off all medications. We chose this regimen following challenges and skepticism from many gastroenterologists who claimed that they used many anti-TB drugs and their patients' conditions had not improved.

This challenge motivated me to study the efficacy of 15 anti-TB drugs against MAP that we isolated from Crohn's patients. My biggest surprise was when we observed that MAP was resistant to 14/15 drugs, which may explain why traditional anti-TB medication may not be successful in Crohn's disease treatment. Following several experiments, we ended with a cocktail of two drugs called rifabutin and macrolide antibiotic therapy (RMAT) (rifabutin [Mycobutin], and Biaxin [(clarithromycin]) that showed significant synergistic activity, and MAP was killed instantly in the tube. This experiment confirmed the first successful use of RMAT in Crohn's treatment by Professor John Hermon-Taylor in London [Mar/Apr 2004 Post]. Many patients who are visiting with Drs. Shafran and Valentine seem to be responding to the antibiotic treatment.

Post: What advice do you offer Crohn's patients?

Naser: I encourage patients to research the Internet on MAP bacterium and to talk to their physicians, because not too many gastroenterologists are aware of current literature regarding MAP involvement in Crohn's and possibly more GI diseases. There are many Web sites and much literature now available that may bring awareness about this disease. For the patients, don't settle for anti-inflammatory treatment as a first resort. Test for MAP, for immune response defect or other agents, before choosing the treatment. Regarding milk: UHT milk or heated milk may be the best choice if you are at risk. Test early and don't ignore IBD symptoms.

Florida gastroenterologist and Crohn's researcher Ira Shafran reports significant success in treating a subset of Crohn's patients with an antibiotic regimen. Susceptible patients may have picked up the bacteria from conventionally pasteurized milk or other daily products. "More and more work using sophisticated technology to identify this organism in the milk supply shows that certain cheeses, milks, and dairy products, in fact, contain the bacteria," says Dr Shafran, Health advocates advise that consuming ultra-pasteurized milk (UHT) products, boiling milk to kill the bacteria, and cooking meat well can help reduce your exposure to the bacteria.

[ILLUSTRATION OMITTED]

For 18 years, Cecelia Matchett suffered from the painful, incapacitating symptoms of Crohn's. In 1999, Matchett enrolled in a clinical trial, conducted by Drs, Ira Shafran and Saleh Naser, to investigate the potential of antibiotic therapy in Crohn's patients infected with the MAP bacteria. Five years later, Matchett remains symptom-free and off Crohn's medications.

"Not only am I in clinical remission, but they tested my blood again, and my antigen response has converted back to negative," the Florida resident reports. "I am willing to tell anyone about this, because even if it only works for some Crohn's patients, it is worth it."

So there is a blood test according to the way I read this and other articles where Naser is interviewed. And this is what happened to this research, please click on the first "this" link in the article, the second doesn't seem to work: http://crohnsawareness.com/blog/2011/09 ... -the-sand/

So, unless I am out of my mind, which is entirely possible, they sold their research to an Israeli drug company that is currently working on the correct drug "cocktail" to kill the MAP infection, when they already know that two thirds of all Crohn's patients they tested for MAP in their studies tested positive and are likely suffering needlessly.

Our current pasteurization procedure in the US doesn't always kill the MAP bacteria, Naser suggests that milk would have to be heated 2 degrees beyond current standards. Currently the meat from cattle known to have Johne's disease is still sold and as one article I read said, if people knew how dangerous that was, and how many people get sick from it, it would make Mad Cow Disease look like a small problem.

I'm still having trouble leaving a live link to either of these articles, for some reason, but you can copy and paste both or go back to page 2 for the link to the blog about it being buried in the sand.

Connnie

[Stanz]

Yes, definitely start writing that book ASAP. Getting started is the hardest part. And don't forget to back up your text files every time you add anything, (and back them up on more than one computer, and/or on a flash drive, as well). Some days you'll write a lot, some days you may add only a sentence or two, some days you won't add anything, and some days, you'll probably rewrite half of what you've previously written, but you'll eventually get there. It can't happen unless you actually start writing, though.

Well, it's still snowing, and I have to pick up the grandkids from their schools in about 3 hours, so maybe I'll start now, after I unload my equipment from my van so that I can get the seat in there so I can drive legal and hopefully get off this hill w/o crashing. I do have snow tires on, thankfully.

Another link to an article written by an MD: http://www.mad-cow.org/00/paraTB.html

I am still not convinced my GF EVER had tuberculosis and the more I read, the more I believe that.

Connie

[tex]

I had read those articles from the earlier posts, including the one about the test, (which was sold), but a test that is unavailable, doesn't exist, for all practical purposes, unless the buyer chooses to use it, or license it to someone who will use it.

You may be right about your grandfather's medical problems. Obviously, the medical community is lost, on such little-understood issues.

Be careful on the roads - that's one of the reasons why I live in Texas - we rarely have to deal with snow and ice, and that's often enough for me.

Tex

[Stanz]

So, I got an email from my PCP today in response to my email about wanting to be tested for MAP. Her husband's family and their kids are GS but try to not eat much of it - --------. She asked me what MAP was. I am not joking.

[tex]

Maybe she would recognize the full name - Mycobacterium avian subspecies paratuberculosis.

Tex

[Stanz]

The last urine test was normal and she did read up on MAP and concurs that I was correct that there is no easy blood test for MAP, except for the one that the U of F researchers sold to the Israeli drug company. So, for now, I am stymied. Am feeling much better, though and getting back to Norman.

So, yesterday my DH met with a new doctor who is both an MD and ND. A friend of his recommended her doctor who after speaking w/my DH recommended this doctor. My DH comes from a family with a history of HBP, diabetes and cholesterol problems and is approaching 50 with all the signs of following that path unless he acts now. I went with him and guess what? Her mother has MC! She and her daughters and her mom have all been tested at Enterolab and they are all GS and GF. She has fought to get patients tested at Enterolab for a long time and knows it's a losing battle. She did whatever tests she knows insurance will cover on him and we'll go from there. We both really loved her style and forthrightness.

I've cancelled my appt. w/my PCP for today, as it's pointless and hopefully I'll never have to go back there, I think I've found a new doctor for myself in her. Marliss, she's near Mt. Tabor, so likely not terribly far for you to travel if you need a new PCP, too. She only works 2 days a week, and he had to wait forever to get in, which is frustrating, but I'm willing to wait.

Here's hoping........

[jmayk8]

Sheila,

I am very sorry for your loss. You and your family are in my thoughts..

Jenny

[Stanz]

In case anyone had any doubts about what is the main concern of our GI docs:

http://today.ucf.edu/ucf-licenses-bacte ... treatment/

and quoting from here: http://www.businesswire.com/news/home/2 ... -Bacterium

As part of the planned clinical trials, RedHill will screen Crohn's patients for MAP infection. The test may also be used by RedHill for future commercial purposes as a companion diagnostic with RHB-104.

Under the license agreement, in consideration for an exclusive license for all indications and medical applications, RedHill shall pay UCF an upfront payment, as well as future net sales royalties of 7%-20%.

I guess we should be happy that they are actually doing studies now that they've come up with the right drug cocktail to make a fortune "curing Crohns". Nasser's research was done in 2003.