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marley Posts: 138
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Has anyone with fibromyalgia been tested for lyme disease?
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amommy02 Posts: 1891
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I was tested several years ago, before my fibro diagnosis. I had a tick, with the rash and all. The test came back negative but my doctor treated me with antibiotics anyway. I am not a doctor. Please consult with your doctor before following any advice given by myself or anyone else on this or any other forum. |
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Fletch2ya Posts: 3183
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HI... I don't think that fibro can minic lymes..... the two disease have some very simular symptoms... that is why so often lymes is missed, and fibro is dignosed as the problem... And if you are going to get tested for lymes, please go to a doctor that is lymes literate.. and the go to a lab for your blood work that is lymes literate... all labs are not alike.... lab corp. is not a lymes literate lab.. I believe that there are only 6 lymes literate labs in the U.S. There is one in Orlando, Fl. you have your blood drawn at a reg lab, they do some simple things to the blood and then you ship it to the lymes literate lab.. Really an fairly simple proceedure.... Not using a lymes literate lab can get you a neg. test even when you do have lymes...... Craig |
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fluffyluggage Posts: 4723
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Actually, Fletch, there are only 2 labs in the US that currently test and report all parts, called bands, of the Lyme test. If you don't have your blood sent to either of them, it's very unlikely you will get an accurate test. You can order the test kit from either lab, Fry or Igenex (there were 2 others that used to perform the test, but they have since gone into research--to my knowledge, there have never been more than 4 in the US), and have your own doctor pull the blood. If you are testing for Lyme, it is highly recommended that you test for what are called co-infections, which are diseases that are passed along with Lyme at the same time with the tick bite, as most people get more than just Lyme. Things like Rocky Mountain Spotted Fever, Ehrlichia, Babesia, Bartonella, etc. Also, I would disagree with you about Lyme not mimicking FMS. Most LLMD's, Lyme-Literate MD's, would also disagree. I have been mis-diagnosed with FMS and CFS, or if I do have them, they were caused by the Lyme that went undiagnosed for 14 years and ravaged my body. Lyme is called "the Great Imitator" for a very good reason. It mimics a number of diseases, and it's recommended that anyone who has ALS, MS, FMS, CFS, lupus, and a great number (over 100) of other diseases be tested for Lyme to be certain of their accurate diagnosis, and especially when they have multiple diagnoses. Trust me, this is something I've dedicated the last YEAR of my life on learning! Lyme is steeped in politics, it's appalling what is going on right now. Anyone who is interested in more information, I have collected several links that really cut through the crap and get right down to the heart of it all. There are 6 of them, I think. If you want the info, just send me a PM, and I'll give it to you. If the group leaders would prefer that I post, I'll gladly do it, just don't want to invade this group with something that they may not feel belongs here. However, I don't want misinformation getting out about something that's REALLY important! *hugs* and peace, Jen  Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help. I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.
Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version) |
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Fletch2ya Posts: 3183
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HI well I hve a have the info from the lab in Orlando, and they say that there is 6 labs..... And I don't know if it is a matter of disagreeing ... It is just that the two diseases have so simular symptoms, it is hard for doctors to tell the difference..... lymes does not say,"hey I am going to act like fibro" it just does its thing like it has for decades and is lymes. CRAIG Post edited by: Fletch2ya, at: 01/19/2009 08:23 Post edited by: Fletch2ya, at: 01/19/2009 08:25 |
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marley Posts: 138
Member
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Fluffyluggage has basically took the words right out of my mouth. It would be beneficial for anyone that has a diagnoses of fibromyalgia to be tested at a reliable lab. If you've been tested already for lyme, you may want to consider being retested. My opinion is that anyone who has fibro, would benefit from doing some research on lyme disease. Good luck |
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Janilee
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Hi Marley, welcome to our fibro family. I was tested for Lyme back in 1993 it came back negative but I'd like to get tested again. The gals here were talking about the Ingenex lab so last Dr visit, I asked her to do a Lyme test and send it to Ingenex and she laughed at me and told me that the lab the Clinic uses is just as good and cheaper. I don't trust the clinic lab for anything. I'm going to try one more time when I go in April. If she won't do it, I'll see if someone else will. |
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marley Posts: 138
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Fletch: Please just think about this. Perhaps getting retested at Igneix. It couldn't hurt. |
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fluffyluggage Posts: 4723
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Fletch, try this--ask the lab you know of in Orlando if they test and report for bands 25, 31, and 34. If they don't, and aren't named Fry or Igenex, you won't get accurate test results. Check out this website: www.ilads.org/basic.html It will tell you that bands 31 and 34 are the most diagnostic, but from my research, I've found that 25 is also just as diagnostic as 31 and 34. In fact, bands 31 and 34 are so diagnostic, they were used for the ill-fated vaccine. They've now been eliminated from testing--and it's NOT because they were used for the vaccine and produce false-positive results. The chances of getting a false-positive are almost nill, whereas the chances of getting a false-negative are about 90%. Great odds, if you ask me... NOT! Also, add to that the fact that most doctors know little to nothing about Lyme, and you actually have to seek an LLMD, not just any old doctor, NOR an Infectious Disease doctor, as they use the guidelines from the corrupt IDSA--I say corrupt, because the IDSA has $$$$$ interests in what they are supposed to be protecting us from. Not exactly the most unbiased way to protect us, is it? I'm only trying to help here, and none of my response is meant as sarcastic in tone, so I hope you don't take it that way. I, however, will NOT stand for someone giving false information about a disease I know a heck of a lot about. I've lived with the pain of Lyme for 14, yes, FOURTEEN years. And I've gone misdiagnosed and undiagnosed for way too long. Had anyone used their brains and listened to me and my history, they could have caught this long ago, and actually dealt with it, instead of let me progess to this point. I will do just about anything to help others NOT end up in my position. Do what you will with what I've told you, I offer what I can because I wish to help others. The info is there for those who wish to see it. And it's not stuff I'm simply making up. Igenex and Fry are top-notch labs who don't screw around, and they are the ONLY labs who test and report all bands. I've done the research and the legwork, and I've CALLED all the labs my doctors have used. I DO know what I'm talking about. Good luck to you in whatever you decide to do. If you wish to talk more about his, I'm happy to do so. *hugs* and peace, Jen Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help. I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.
Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version) |
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Iknowpain Posts: 1841
Senior Member
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My doctor insisted that I got tested for Lyme before they would diagnose me so they would not miss anything. Favorite Poem :
It is such a relief when you first find out.
That the pain really does have a name,
And then you will ask (and everyone does),
"Just where can i place all the blame".
No matter the limits, no matter the pain,
There's no evil, cruel "Master Plan".
It just simply happens, It just simply is.
You adapt, and you change what you can.
But even with the knowing the best and the worst,
All the pitfalls the future could hold,
You still have a choice, you quit or you fight.
You determine the story that's told.
And every small step that we take, my dear friends,
Each battle that we slowly win,
Just credits the love and the caring we share
With the FMily that we call our friends. |
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