Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

What Is The Deal With Fibromyalgia?


floridanative

Recommended Posts

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Open Original Shared Link

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,991
    • Most Online (within 30 mins)
      7,748

    ZENken
    Newest Member
    ZENken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.