NeuroTalk Support Groups - Fibromyalgia: A Likely Cause and Some Possible Actions

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Fibromyalgia and Chronic Fatigue (https://www.neurotalk.org/fibromyalgia-and-chronic-fatigue/)

- - Fibromyalgia: A Likely Cause and Some Possible Actions (https://www.neurotalk.org/fibromyalgia-and-chronic-fatigue/13427-fibromyalgia-cause-actions.html)

More Related to Fibromyalgia and Mycoplasmas

Here is a link with more information related to Fibromyalgia and Mycoplasmas:

http://www.thepowerhour.com/news/mycoplasma_testing.htm

I now think that my fibromyalgia symptoms are due to a chronic Lyme disease problem. Besides quite a number of supplements for general health, I am doing three specific things to deal with my self-diagnosed Lyme disease. I am avoiding fluoride where possible. I am taking boron supplements. I am taking seabuckthorn. So far, after almost a week, I am experiencing significant improvements. I will report back after my improvements have leveled off some. In the meantime, I think anyone with Lyme or CFS/FMS should seriously consider seabuckthorn (tea, seed oil, fruit oil). I am not supposed to give you links to commercial sites, so all I will say is that one producer of seabuckthorn products has some good background information in a section titled "Seabuckthorn Science."

Olive Leaf Extract and B12

I have decided to add olive leaf extract (to deal with what I suspect are reactivated viral infections - warts and possibly measles in the gut). I have also decided to add the methyl form of vitamin B12 to help with nerve and brain issues. That was yesterday. Today, I woke up kind of punchy, with more sensitivity to sound than usual. I take these increases in my symptoms as a good sign. I remain hopeful.

Here are some links I've found while researching celiac disease in regard to fibromyalgia and diet/ food sensitivities/ gut health. People with celiac disease are sometimes misdiagnosed with fibromyalgia before celiac disease is discovered.

Fibromyalgia: Elimination Diet May Ease Fibromyalgia

Chronic Fatigue, Irritable Bowel Syndrome Mistaken For Celiac Disease ImmuneSupport.com

FIBROMYALGIA: WHAT DOCTORS DON'T KNOW OR TELL PATIENTS

Is it FMS, CFS, or Celiac Disease?

Nutritional Healing on CFS/FMS

Also some PubMed abstracts that may offer some insight into how intertangled these conditions can be~

Quote:

Patients with fibromyalgia (FM) frequently have gastrointestinal symptoms and signs. This article critically reviews the available literature and concludes the following: evidence that inflammatory bowel disease is associated with FM is contradictory, but should be looked for in patients taking concomitant steroids; patients diagnosed with celiac disease often have a history of FM or irritable bowel syndrome (IBS) that may or may not be present; reflux, nonulcer dyspepsia, and noncardiac chest pain are common in FM patients; medications used to manage pain, inflammation, and gastrointestinal complaints confound the management of FM; and IBS affects smooth muscles and the parasympathetic nervous system, while FM patients have complaints of striated muscles and dysfunction of the sympathetic nervous system. Of those patients with FM, 30% to 70% have concurrent IBS.
Fibromyalgia: the gastrointestinal link. PMID: 15361320 Oct 2004

In the initial survey (N = 1032 respondents), the median age at onset was 46 years, and the diagnosis of adult celiac disease was often delayed (median 12 months, with 21% delayed over 10 years). Only 32% of adults were underweight, and only about 50% reported frequent diarrhea and weight loss. A second survey documented that common presenting symptoms were fatigue (82%), abdominal pain (77%), bloating or gas (73%), and anemia (63%). Initial physician diagnoses were often irritable bowel syndrome (37%), psychological disorders (29%), and fibromyalgia (9%)
Presentations of adult celiac disease in a nationwide patient support group. PMID: 12741468

Results indicate that 70% (14/20) of the PFM patients had IBS and 65% (13/20) of the IBS patients had PFM. In conclusion, these results indicate that PFM and IBS frequently coexist. A common pathogenetic mechanism for both conditions is therefore suggested.
Primary fibromyalgia and the irritable bowel syndrome: different expressions of a common pathogenetic process. PMID: 2049586

Coeliac disease is a common finding among patients labelled as irritable bowel syndrome. In this sub-group, a gluten free diet may lead to a significant improvement in symptoms. Routine testing for coeliac disease may be indicated in all patients being evaluated for irritable bowel syndrome.
Coeliac disease presenting with symptoms of irritable bowel syndrome. PMID: 12869084

An association between irritable bowel syndrome (IBS) and small intestinal bacterial overgrowth (SIBO) has been found.
A link between irritable bowel syndrome and fibromyalgia may be related to findings on lactulose breath testing. PMID: 15020342

This dietary intervention shows that many fibromyalgia subjects can be helped by a mostly raw vegetarian diet.
Fibromyalgia syndrome improved using a mostly raw vegetarian diet: an observational study PMID: 11602026

The elimination of MSG and other excitotoxins from the diets of patients with fibromyalgia offers a benign treatment option that has the potential for dramatic results in a subset of patients.
Relief of fibromyalgia symptoms following discontinuation of dietary excitotoxins. PMID: 11408989

Cara

Fibromyalgia and Celiac Disease

Cara,

Thank you so much for your response and for the links. It is self-diagnosed, but I do believe that I have celiac disease. I have been on a pretty much gluten free diet for about 2 years (towards the beginning I kept trying to eat just a little piece of bread for communion). I have experienced a huge benefit being on a gluten free diet. But not everything got better.

As I have researched my fibromyalgia symptoms, I have come to realize that I got Lyme disease over 40 years ago. I got the classic bull's eye rash (which I had forgotten about because at the time I thought it was ringworm), bad flu-like sickness and a dry cough that lasted for months. Then fatigue, memory problems and joint pain.

I agree with the thought expressed in one of your links: "Primary fibromyalgia and the irritable bowel syndrome: different expressions of a common pathogenetic process." I think that something about Lyme disease triggered my gluten intolerance. The idea I am playing with is that Lyme disease messed up my immune system so that measles was able to establish or reestablish itself in my gut.

Thanks for the links. I am glad to know more about celiac disease.

By the way, no MSG or artificial anything for me.

You're welcome, wasabi~

Your mention of Lyme Disease does not surprise me. It seems a fair number of people who have lyme disease have gluten sensitivity, too. I've been told people have noticed and discussed this on Lyme Disease boards as well. We've had quite a few conversations on GS/CD board trying to decide what really comes first. Does gut damage (leaky gut) from lyme disease set the ball rolling to develop gluten sensitivity? Or does the gut damage, nutritional deficiency, and compromised immune system from gluten sensitivity/ celiac disease... cause one to more easily succumb to lyme disease (and other things, like h. pylori, sibo, etc)? Seems like it can be rather circular.... perhaps go either way... but does frequently occur together.

In any case, we've had a few members pass through the GS/CD who have had both lyme disease and gluten sensitivity (and b12 deficiency, too!). These conditions can all cause similar symptoms, and all of them must be treated in order to get well.

I've also known a few who were diagnosed with fibromyalgia first, but improved only after discovering and treating the celiac disease. It can be a long process for people to uncover these co-existing conditions... one by one, over time. They may not always go together, but sometimes they do... and they all need to be diagnosed and treated.

Cara

Importance of Glutathione

Here is a short article that talks about the importance of glutathione:

http://www.dfwcfids.org/medical/whey.html

By the way, in addition to the expensive Immunocal, ImuPlus, or ImmunePro, the Fat Flush Whey Protein Powder claims to be undenatured as well - it only costs somewhat more than normal whey protein powder for bodybuilding etc.

Wasabi & all,
Have you encountered any research comparing "regular" whey with the special undenatured stuff? I have a teen on the spectrum with documented glutathione glitch, and he does much better with his "body builder" whey powder than without it. He uses Designer Whey French Vanilla, one of the few that doesn't have artificial sugars (this one uses stevia).

Thanks for your thoughts.

SnooZQ,

I really don't know about the research. What I've read has been based on Immunocal. I believe that most all whey proteins would help raise glutathione levels. I would guess that there is a difference between the various products' effectiveness. Immunocal, ImuPlus, ImmunePro, and GSH Plus are able to charge a huge premium for their products.

According to the GSH Plus literature the active components are "Concentrations of 3 bioactive proteins contained in the milk serum: Thermolabiles, serum albumin, alpha lactalbumin and lactoferrin."

Furthermore, "In the manufacturing of other whey proteins several things happen: in the process of heating and pasteurization critical bonds holding the cysteine molecules together are broken, thus destroying or diminishing the very proteins that serve to raise glutathione levels most effectively. We've developed a process by which these delicate proteins remain intact in their natural form to serve us most effectively."

I am using Fat Flush Whey Protein because their process does not denature these "delicate proteins." By the way, Fat Flush Whey Protein is sweetened with stevia and inulin.

About your son's Designer Whey Protein. If you go to the News and Press section on their website and click on "Whey - Protein's Role," you will read that in the portion of Designer Whey Protein made up of WPI whey protein isolate, "obtained using a unique pressure-driven ultra-filtration technology. The company says that WPI fractionated by pressure-driven ultra-filtration keeps intact components such as glycomacropeptide, which can aid dieters in curbing and controlling their cravings, as well as the anti-bacterial lactoperoxidase and the anti-microbial, anti-inflammatory, immune system-boosting fraction lactoferrin."

If you click on "Why Whey" in the "Whey Information" section you will read in section "4" that, "Also, in recently released clinical blood tests, hard-training athletes stacking 6 scoops of DESIGNER WHEY per day increased glutamine blood levels an incredible 15% during a sustained 28 day training period (1). These blood tests are even more remarkable considering glutamine levels have been shown to drop 55% after an intense workout. Even a 26% drop in glutamine levels results in an 11% decrease in protein synthesis, and therefore, a decrease in muscle growth (2)."

Glutamine is a precurser to glutathione, so there's a good chance that Designer Whey helps with building up glutathione levels too. Especially because he is probably consuming large amounts of Designer Whey, he is also getting a lot of the bioactive ingredients that go into building up glutathione levels.

You may also be interested in this article titled, "Augmenting Glutathione in Chronic Fatigue Syndrome"

http://phoenix-cfs.org/Glutathione%2...20in%20CFS.htm

Here's another thought. Donna Gates, who developed the Body Ecology Diet believes that "Body Ecology has a much more valuable approach for unlocking the mystery of autism. Our theory is that the missing piece lies deep within the intestinal walls and includes conquering systemic fungal and viral infections.
Indeed I believe autistic children are suffering from a gut and brain infection that creates neurological dysfuction, which can be corrected with time. The research needs to be focused in this direction, rather than focusing on mercury." By boosting glutathione, the Designer Whey Powder may help your son to fight gut and brain infections and thus improve his health. Here is Donna Gate's article, "The Myths and Truths of the Mercury/Autism Connection":

http://www.bodyecology.com/06/11/23/...connection.php

I am taking olive leaf extract, and now undenatured whey protein powder because I believe I have a measles or some other chronic viral infection in my gut.

Hi Wasabi,

Thank you very much for researching & clarifying this info. I think for now, for financial reasons, we will stick with the DW, as it is quite inexpensive compared to the alternatives: $15 for 2.5 pounds -- by my reckoning, about $ 0.33 per serving based on the recommended 15 gram serving.

Keep up the good work. I hope your olive leaf extract experiment is helpful.