Old 06-03-2014, 12:09 PM #1 (permalink)
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Hi everyone, I just wanted to share my story. In 2008 I was diagnosed with Fibromyalgia. Now, I live on the East Coast, so i've heard of Lyme disease, but I didn't really give it a second thought. Anyway, fast forward 4 years...I'm not getting better, and I sure as heck am not getting any younger. Well, I decided to get a second opinion in Arizona at a place called Shea Medical. I found out I had, in fact, Lyme disease - not fibromyalgia. I had been misdiagnosed. I spend alot of time outdoors so I must have been bitten by tick. I am lucky I found out and got that second opinion. I'm much better now after treatment and feeling great. thanks for listening everyone. hope this helps.
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Old 06-03-2014, 04:49 PM #2 (permalink)
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You're blessed! I wish that I would be diagnosed with something treatable. Mine was a diagnosed by exclusion, and I've suffered 17 years. No one ever tested me for Lyme. What were your primary symptoms?
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Old 06-04-2014, 12:26 PM #3 (permalink)
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Well, let's see. I had muscle aches, brain fog, low energy...you name it. People always thought I was tired all the time but my body was being attacked by Lyme disease and it's co-infections. Because I didn't have the bulls eye rash the "professionals" didn't think I had Lyme disease. Boy were they wrong. Just glad I went the alternative route.
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Old 06-04-2014, 12:44 PM #4 (permalink)
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Default Re: misdiagnosed

Quote:
Originally Posted by jimmy deen View Post
Well, let's see. I had muscle aches, brain fog, low energy...you name it. People always thought I was tired all the time but my body was being attacked by Lyme disease and it's co-infections. Because I didn't have the bulls eye rash the "professionals" didn't think I had Lyme disease. Boy were they wrong. Just glad I went the alternative route.
That's totally wonderful that you found out it wasn't fibro that you had! I don't know much about Lyme and I had no idea that it could hand on for years like that... I thought it eventually just "went away" but obviously not! Is it something that can't be cured, just treated?

I wonder if doctors always check for that now before wondering about fibro and the other things they always check for?
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Old 06-05-2014, 12:56 PM #5 (permalink)
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What I found out is that infections stay in your body - it is your immune system that is always fighting them. Therefore, strengthen your immune system and you will beat Lyme disease - as well as some good IV antibiotics and biofilm treatment.
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Old 06-05-2014, 08:17 PM #6 (permalink)
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Although, you have Lyme Disease, with it you do get a form of arthritis that is similar if not the same as fibro, if left untreated. Those with Lupus, also get muscle aches and pains. I am glad you found out what was wrong and received treatment before it went into the advanced stages. Many of us have been tested for both of the above diseases several times with negative results. But sometimes one or the other pops up, and sometimes people are found to have fibromyalgia right along with these other conditions.

I would not consider myself lucky to end up with any of the above. What you are diagnosised with is something you must learn to treat and manage for the rest of your life. It is a hard battle which ever one you end up with. Like you say your immune system is always fighting them and with proper care and management life can be much better and with less pain.
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Old 06-08-2014, 10:06 PM #7 (permalink)
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I will mention Lyme testing to my doctor (next appt August), but I understand that only certain labs can test it accurately. Anyone heard this? I'm getting weaker and pain is slowly getting worse. Now I have bladder / genito-urinary symptoms, trouble swallowing for about 5 years, and I don't even mention it bdcause doctors frankly don't know how to do anything other than order basic bloodwork and write prescriptions. So tired of fighting...every ounce of energy goes toward my full time job and my home.
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Old 06-09-2014, 11:44 AM #8 (permalink)
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The good tests are the Elisa test and Western blot...
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Old 06-10-2014, 01:33 PM #9 (permalink)
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Wow. I am sorry that you were misdiagnosed and not getting the proper treatment that you needed. I think that a lot of us could be misdiagnosed to be honest. I, myself, feel like I'm being misdiagnosed. I mean I honestly don't have those tender spots that Fibromyalgia patients have. I just have a lot of pain. Now I was told I have a low level of Vitamin D, which they advised me to take 50,000 btu of it for about three months....NOT! I went and bought my own bottle from Walgreens and have been taking it in much lower dosages. Too much Vitamin D can harm you as well. I think most doctors are just throwing FIBROMYALGIA on a lot of patients because they are too lazy and too self absorbed to really get to the root of the problem. What does constant joint pain have to do with Fibromyalgia? How about checking me for osteoporosis or checking my swollen thyroid that has cysts on them? Sorry, I got off your problem. I'm just glad you got the right diagnosis and treatment.
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Old 06-10-2014, 04:12 PM #10 (permalink)
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I agree with you. The thing about this place is that they dug deeper into my problem - instead of just giving me drugs. We need more doctors like the guys at Shea Medical.
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Old 06-20-2014, 01:13 PM #11 (permalink)
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I know you all secretly wish this: That your doctor could spend ONE HOUR inside your body, experiencing what it's like to have this. I'm at work trying to use the keyboard, and my biceps feel like they're on fire. The bottoms of my feet burn, and I'm just EXHAUSTED. I wouldn't wish this on anyone, but I would LOVE for them to experience it for just one hour.
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