Hi, I'm new with questions

[dc2007]

Hi, I'm new to the FM forum. I got a great deal of information last year from the coeliac/gluten forum when I was first searching for a diagnosis and alwyas appreciate the intelligent input from all braintalk members.

I have had tons of medical work done and am negative for everything (except inflamation). I've never been able to accept that my symptoms aren't coming from something like Lymes or a micoplasm. I have experimented with herbs like grapefruit seed extract and oregano. I always have symptoms like herxheimers reactions (sp?) and sometimes have night sweats when taking herbs but my blood work is negative for everything I've ever been tested for.

My doctor has me on Plaquenil and I am continuing with some herbs because I have this hope that there could be improvement. But they say chronic parasitic infectins can take years to cure. There are some other prodcuts on the market that I would like to learn more about because they claim they are effective immediately.

Does anyone have any knowledge about the zapper or sputnik products which use an electric current or frequency to eliminate bacteria and parasites? there is tons of info on the internet about them but it is all too commercial for me. I am willing to try this stuff, but this is pricey and complicated and I would love some input from people who aren't trying to sell it.

Any comments are appreciated. DC

[Tootsie]

I'm not sure where to begin in replying to this posting. You do not mention what kind of symptoms you are having and if everything is negative, why are you taking Plaquenil? Does it help your symptoms? If it does, why are you searching for something different?

Your comment about the information you find on the Internet is very revealing. You find it "too commercial." That is precisely why it is being sold on the Internet. It has no truly scientific testing to back up the claims, and costs lots of money. Most likely, the only things these products cure is the poverty of those selling it.

It is very common for people suffering from depression to continue to seek an elusive, medical diagnosis, for their suffering. I did this myself, many,many years ago. My wonderful doctor tried everything in the Physician's Desk Reference to see if it would help. If it did, the improvement was so minor, and the side effects of the drugs, too much of a nuisance, that I stopped using any medication at all on a daily basis.

For fibromyalgia, most of us, have found that the combination of, a normal, nourishing, a healthy diet, mild enjoyable, regular exercise, an elimination of stress, and adequate sleep, keep the symptoms manageable enough to enjoy life. Cheerio.

[dc2007]

Thanks for responding and sorry I didn't explain myself thoroughly.

In brief: My message was vague because I do not have all of the answers myself.

More on the symptoms and treatments:

All symptoms arose in my 30's and have been progressively worse for over 10 years. I have FM which is persistent and most problematic in my neck and shoulders. I also get debilitating hand and foot cramps, I have a peripheral neuropaty and my coordination is poor, sun allergy, dysphagia, dry mouth and eyes, night blindness, heart palpitations, there's more and basically these things may or may not be explained by one thing. FM is my most chronic problem and I consider it a symptom of an underlying condition.

I have been tested for MS, coeliac, crohn's, Lupus, scleraderma, and other autoimmune diseases/infections and conditions that could be causing my symptoms. I have tested negative for all of them. I had a selenium deficiency and anemia which are rebounding after a year of supplements. I do have chronic inflammation in my throat, esophagus, stomache small intestine, and colon. Many of my symptoms have improved since I went gluten/soy/casein free and started supplementing for the selenium and iron deficiency. FM has not improved with the diet.

My current diagnosis is "probable Sjogren's/Sicca syndrome, possible mixed Connective tissue disease".

I was put on Plaquenil as a trial and I notice some changes in my symptoms but FM has not improved much. Since this is my only daily symptom that really bothers me I may not continue with the Plaquenil.

I do not fit the mould for depression. I will try anything that I understand to be safe and would love to talk to people who have experimented. .

Thanks again for looking and responding.

[Tootsie]

Whew! Thank you for the clarification! Now, things do make sense to me and it does sound like your fibromyalgia is secondary to your doctor's diagnosis. Even that sounds right to me. I worked for many years with a woman you had Sjogren's Disease and an accompanying arthritis. Plaquenil is a good drug to keep the arthritis type of symptoms under control. Just make sure that you follow up annually with an opthalmologist while you are taking it.

I also think you have been very wise to try the Gluten Free diet, as from what I have been reading, and learning here, on that forum, is that many of the auto immune diseases seem to have some strange connection to gluten sensitivity. There simply isn't enough data yet to make an outright correlation. I have another friend whom I worked with that was found to be severely anemic. At our age, anemia is thought to be from undetectable bleeding in the bowel due to a malignancy. All her tests were negative, until they did the bowel biopsy and found that she had celiac disease! She is in her seventies, had eaten wheat all her life, and her ONLY symptom, was the anemia! Celiac disease is part of that auto immune grouping.

On this forum, occasionally people have posted that magnesium supplements seem to help them. That may help with your hand and foot cramping. Also, please check out the Peripheral Neuropathy Forum. Rose, who posts there is very knowlegeable and helpful about vitamin B deficiences and her own experience is valuable. Let us know how things are going. Cheerio.

[makenzie07]

cymbalta helps with pain, but to be sure a healthy diet is a must with rest and much less stress. i dont know about the internet thing you talked about. also i make sure my ph level is up to snuff adding it to my drinking water or making sure my drinking water has a high ph value. ll