Diagnosed with fibromyalgia and Meni... 
#56608
11 y
6,576
† Cross †
Hi I've been diagnosed with Fibromyalgia, along with Meniere's disease, nystagmus, and oscillapsia.
I've been very sick for the last 4 years but have battled with the exhaustion for well over a decade now, but only since I got extremely sick did I start seeing doctors to find out what was going on. I've probably had fibro for 12+ years but until I lost my balance, tried to ignore it. In the last 6-7 years the exhaustion has increased to unbearable levels. In the last 4 the pain and weakness has become disabling.
When I first went to a neuro, he suspected MS. My MRI was fine so that was dismissed.
I've had people suggest Lyme but my lyme test was negative. I've tried to get a more reputable test done but my doctor wouldn't cooperate. I've been looking for a lyme doc that'll see me for a reasonable price -- just to get a solid dependable test done and start from there. If it's not lyme, then I can focus my energy on other possibilities.
Does anyone here know of anyone in NYC that'll see me just to get the test done?
What are others' experiences with this? Has anyone with fibro here been diagnosed with lyme? Has anyone recovered from this? If so, what did you do?
I've posted this also to allergies and intolerance because I'm totally affected by others' cig smoke, my neighbor smokes and it wreaks havoc on me! I use all natural cleaners but if someone has used bleach on their clothes my eyes burn and I get sick. Just want to put that out there because that's probably an important component to my health issues.
Thanks to everyone who takes the time to read and respond!
Best Wishes
- Re: Diagnosed with fibromyalgia and ... natway
11 y
5,729
This is a reply to # 2,079,845From your other posts you said you are vegetarian, have low blood pressure and also hypoglycemia.
The number one mistake vegetarians make is not eating enough and under-eating can cause things like low blood pressure and low blood sugar. I believe under-eating also causes Fibro.
According to this government site, for your age you should be getting at least 2,200 calories a day to be active.
http://www.nhlbi.nih.gov/health/public/heart/obesity/wecan/healthy-weight-bas...
A leading vegan site that warns about under-eating recommends at least 2,500 calories a day for women to be active:
http://www.30bananasaday.com/profiles/blogs/calorierequirements
The second biggest mistake vegetarians make is eating too much fat. I personally recommend the macronutrient ration of 80-10-10, or 80% or higher in carbs and a max of 10% of calories from protein and fat. Popular high-carb/low-fat diets are Starch Solution, Engine 2, and 80-10-10 (raw vegan). Check out the Raw Till 4 diet too.
Another mistake vegetarians make is eating too much junk food and processed vegetarian soy products.
I would start by making sure you're not under-eating, then go from there. A handy app to help calculate how much you're eating per day:
http://cronometer.com/
- Re: Diagnosed with fibromyalgia and ... Ten1988
11 y
5,726
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This is a reply to # 2,079,845MS is an illness with "no known cause". The actual causative agent is Borrelia Burgdorferi(Lyme Disease). I have done some research on MS and lyme. There is one study where 163 MS patients were tested for lyme, and in all 163 patients they cultured spirochetes from the blood. All had Lyme, leading to their decline in motor function and MS symptoms.
Just because lyme test is NEG doesn't mean you dont have lyme. Don't trust these doctors, trust your instinct. You don't have MS, go find a lyme literate medical doctor(LLMD). I began developing MS symptoms in 2010, after being ill for 5 years with an "unknown" illness. Then tested Western Blot for Lyme, had 4 positive bands that are significant antibodies to the bacteria.
Which test did they run on you for lyme, most likely the ELISA, which produces tons of false negatives! Once they run that and it is NEG, they always dismiss you from having lyme. Best test is a Western Blot, through Igenex labs in California. The western Blot is supposed to be a "confirmatory" test AFTER the ELISA, but the Western Blot actually shows if you have had exposure to any parts of the bacterium, past or present....I know how to read them and everything.
Don't take your MS diagnosis. You are probably full of bacteria, which is causing your decline. MS, ALS, and a number of other illness's I believe are ALL caused by Lyme and/or it's coinfections. It's all about $$$.
- Re: Diagnosed with fibromyalgia and ... Ten1988
11 y
5,791
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This is a reply to # 2,080,271Forgot to add that I am now 90% better, after having lyme 8 years. It would have eventually progressed to MS I believe, as I was having the jerking symptoms, and twitching, especially my facial muscles and extremities. Go pursue lyme disease heavily, until you find a LLMD that will run a western blot through Igenex. Don't pursue MS until you rule out lyme for sure, as lyme is a very tricky SOB and is what causes MS in my eyes. It's a re-engineered bioweapon, which broke out from Plum Island, NY. Why do you think it evades testing and diagnosis by many mainstream professionals?! $$$$, they diagnose you with lyme right away they treat you for 4 weeks and you are good.
If they stall you and say they cant find your problem, then the lyme sets in and by the time they make a diagnosis whether it be lyme or MS or whatever they say you "have", you are fighting an uphill battle while they get to make $$$ by prescribing expensive MS or ALS drugs, & even if you find a good LLMD, they get to prescribe you long-term Antibiotics which then rake in tons of $$$ for the big pharma industry. They want you sick for a while before they treat you, or they want to misdiagnose the lyme as something else. Believe it or not, it's true. I hope you find some actual help, and stay away from the mainstream medical professionals.
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- Re: Diagnosed with fibromyalgia and ... brooklynlady
11 y
5,595
This is a reply to # 2,080,271They did test me with the ELISA.
I got a kit sent to me from Igenex but my doctor won't give me a scr1pt for another test. I'm trying to find someone that is lyme literate that doesn't charge a fortune just to order me a test (using Igenex).
Finding someone has been impossible so far. If anyone has recommendations, I'd really appreciate it.
- Re: Diagnosed with fibromyalgia and ... Ten1988
11 y
5,791
- Re: Diagnosed with fibromyalgia and ... AngelofEventide
11 y
5,749
This is a reply to # 2,079,845Look into MTHFR, hypothyroidism, Epstein-Barr, candida, parasites, heavy metal toxicity, jaw cavitations, just to name a few. I too have Fibro, Meniere's and about 30 other symptoms. BTW, unless you are testing for Lyme theough Igenex lab, most other labs will give you a false negative if you have Lyme.
- Re: Diagnosed with fibromyalgia and ... brooklynlady
11 y
5,380
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This is a reply to # 2,081,117I got a kit from IGENEX and have been trying to find a doctor who will put in the order for the tests. For some reason my doctor wouldn't do it.
- Re: Diagnosed with fibromyalgia and ... brooklynlady
11 y
5,380
- Re: Diagnosed with fibromyalgia and ... shotsee
11 y
5,677
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Original Hulda Clark
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This is a reply to # 2,079,845Hi 566,
If you are unaware of the virtually "miraculous" results people have had ingesting ascorbic acid, i.e. vitamin C, at daily Bowel Tolerance doses, I encourage you to read the article written by a medical doctor here: http://vitamincfoundation.org/www.orthomed.com/titrate.htm
Best success to you in solving your health issues,
David
- Re: Diagnosed with fibromyalgia and ... natway
11 y
5,729
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