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What Is The Deal With Fibromyalgia?


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chrissy Collaborator

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.


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AndreaB Contributor
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.

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CarlaB Enthusiast
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.

Rachel--24 Collaborator
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. :)

chrissy Collaborator

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

AndreaB Contributor
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. :)

Rachel--24 Collaborator
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.


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CarlaB Enthusiast

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.

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    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
    • trents
      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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