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floridanative

What Is The Deal With Fibromyalgia?

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i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

is carpal tunnel connected to fibro? i am having so much trouble with it recently. i can't hold a book or magazine without my hands and wrists cramping. my fingers are starting to feel kind of clumsy, too.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

I don't know about carpel tunnel but you can call Igenex to get the paperwork for the lyme testing. The blood draw would need to be done early in the week M-W I think.

www.igenex.com


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

Yes, but you need him to use IGeneX. Other labs aren't as experienced in Lyme testing because they don't do much of it. I had the test kit mailed to my house and took it to my doctor to do.

Plus, remember, like celiac, it's a clinical diagnosis. They use the blood tests to support diagnosis.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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i have an appt. with a neurologist in 2 weeks---i suppose i could ask him to run a lyme test?

Make sure that if you get tested its not just by any "standard" lab your neurologist might use.

As previously mentioned all Lyme testing should be done by a lab which specializes in Lyme and has the greatest sensitivity....this would be Igenix.

As it is...Lyme is not easy to diagnose via testing....its still a clinical diagnosis based on symptoms because the tests arent 100% reliable. Igenix is the best available right now. Other labs have less than 60% sensitivity and give a large amount of false negatives.

One Dr.'s remark..

I have had patients covered in ticks or with a classic grossly obvious bulls-eye rash who, months after the rash, when seeking treatment were negative at many labs. Some of these well known labs have dummied down their results and testing because "they were getting too many positives."

The reason Igenix is considered the best is that its the only lab which has 13 proteins tested from 2 important strains representative of international Lyme.

The bacteria modifies itself...changing outer proteins....similar to how we change our clothing every day. The proteins have to be harvested at the lab...other labs do not harvest all these changing outer proteins.....which is one reason for false negatives.

All of these proteins represent specific parts of the bacteria...same way we each have a nose, mouth, ears, etc. Some labs might only be looking for the "nose"....Igenix is looking for 13 parts of Lyme.

Also...In order to be licensed in New York State you are sent clear negative samples and clear positive samples of Lyme proteins in blind tubes. Igenix results have been exceptional and approximately 100% year after year.

This info. came out of a newspaper article I just read today...and this is the reason if you're gonna bother with testing at all...I would recommend doing it with the best thats available as Lyme is a tricky bacteria which does a good job of hiding from the immune system. If antibodies against lyme are not available in the blood.....testing will be negative regardless of how severe the infection and regardless of which lab is running the test...including Igenix.

If the immune system is producing antibodies...Igenix is the best lab to pick these antibodies up as they are easily missed in other labs. Specific antibodies are directed to each part of the bacteria...so if a lab is *only* looking for antibodies against the "nose"....and these antibodies arent found in the blood...you could have a false negative.

Igenix is looking for antibodies against 13 parts of Lyme....increasing your chances of testing positive if indeed the bacteria is present.

Sorry for the lengthy explanation but thought that some might wonder why it matters which lab performs the test. :)


Rachel

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which test kit do i need to order to bring to the doc?


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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which test kit do i need to order to bring to the doc?

Carla or Rachel will have to answer this one. I know they are Western Blots but don't know anything other than that.

I wanted to invite you (and anyone else interested) over to the OMG thread if you'd like to join everyone over there. Basically people on that thread are dealing with issues that don't resolve with gluten free alone. The main issues seem to be lyme, mercury toxicity, candida, molds.....that type of thing. If you come over just jump in and ask questions and learn from the others and share what you've learned as well. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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which test kit do i need to order to bring to the doc?

My Dr. only uses Igenix for Lyme testing so I never had to order the tests myself. The first tests he ordered for me were the Western Blots. There are two....IgM and IgG.

Carla ordered her own and brought the kit to her Dr. I believe. Not exactly sure which panel she ordered.


Rachel

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IGeneX will just send you the box that you will mail it back to them in with the vials for the blood in it. You can choose the test after you get the box.

I got the complete initial panel. You need to at least get the two Western Blots.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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