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07/19/2008 15:07
lovedar
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I've had fms for 20 years, at least they say that's what it is. Believe me the pain is not confined to just tender points,I have hurt in every single part of my body.At this point I am praying the tests are wrong and I have Lyme instead. Gentle Hugs to you.

Linda

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07/19/2008 20:22
darlabrown1
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Hi Linda...I'm glad you came to this site as I've found it to be emotionally supportive as well as incredibly informative. I encourage you to read posts, ask questions, and of course let me know if I can help.

You are not alone girlfriend!

Love, Darla

Darla
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07/26/2008 15:46
lmcclure4477
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I also have fibromyalgia but feel that my pain is in more places than the tender points. I think that I too may have lyme, but my tests keep coming back negative.
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07/28/2008 16:20
ConnieD
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Hi Lovedar,

Welcome to this site. I'm sorry you have been suffering for so long. Many of us on here have gone years and years undiagnosed, too.

I was diagnosed with FM in 2004 after suffering for years with pain. At the time, I was glad to have a name for my ailments (back then I just didn't know any better). My 'FM' got worse every year and it was getting worse fast towards the end (in 2006 and 2007). I was told to see a pyschiatrist. I found a new doctor and was finally correctly diagnosed with Lyme and coinfections. I began treatment for Lyme and coinfections in March of 2007 and I am now a recovered Lymie. I have my life back.

I hope you find the answer to your pain. Have you had any tests for Lyme and what were the results?

Are you seeing an LLMD?

When your body is in pain, it's trying to tell you something. I think it's shameful that people are just told that they have to live that way (in pain). In my case, FM was caused by Lyme. My lyme is gone and so is the FM.

feel free to ask any questions.

Peace,

Connie

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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07/28/2008 16:21
ConnieD
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Also, I saw that your tests are back Immclure. Which tests did you have and what were the results?
Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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07/28/2008 16:25
lmcclure4477
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My ELISA test came back negative through Quest Diagnostics and I am still waiting for my Western Blot also through Quest. They never ran the test last time because my ELISA was negative. If I want to get the Ingenix test, which tests would I order? I got the order form, but there are so many to choose from.
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07/28/2008 16:48
ConnieD
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What a pain....However, remember that Lyme disease is mostly a clinical diagnosis anyway. If you have a strong feeling that you may have feeling, seek out an LLMD. Jaime has the list, you probably knew that by now.

As far as which tests to order from Igenex, I'm not sure about that myself. However, I will look into that. My doc used a lab called Immunosciences. Many on here used Igenex. So, someone may even come along to answer your question while I am looking for the right answer.

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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07/28/2008 17:48
lmcclure4477
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Thanks Connie. I am not sure if I have lyme, I think I might, but my symptoms are also consistant with fibro. My sister works at University of PA hosptial and she said a rhemetologist there specializes in lyme and fibro. Do yout think I should make an appoitment with him?
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07/28/2008 19:47
AnnF
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I had my test done through Igenex, tested for Lyme and all co-infections. Good luck!

Ann


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07/28/2008 20:19
ConnieD
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Well, that's a complicated question. First of all, is this rheumie an LLMD??? I'm guessing not. So, the treatment will definitely be questionable. Fortunately, you have all of us to bounce things around with you.

Second, it might be worth an 'exploratory' appointment. Your insurance will probably cover the appointment. So, there's not a lot to lose....just your time if this doctor turns out to be , well, a joke (when it comes to treating and diagnosing Lyme).

Has anyone helped you find an LLMD in your area? Maybe you should just go ahead an make the appointment with an LLMD to 'rule out' lyme. It's my understanding that there can be a lengthy waiting period.

I'm still working on your question about what to check on the test form. You should be tested for Lyme and all coinfections, too. Is the form confusing?

We'll have more answers about that soon .

In the meantime, take good care of yourself....some good supplements are probiotics, monolaurin and glutathione, too. I take magnesium glycinate...it really helped to relax my neck muscles. You have to be really careful about which form of magnesium you buy. it can be difficult to absorb. Magnesium glycinate is apparently absorbed very well, by me.

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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