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."

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~


Cara

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

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.