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

The Lyme Disease Thread

CarlaB

Recommended Posts

Rpm999 Contributor
Rpm999
Posted

ugh my god, i called and he doesn't use igenex anymore....what a joke already

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

Celiac.com Sponsor (A8-M):


  • Replies 886
  • Created
  • Last Reply
CarlaB Enthusiast
CarlaB
Posted
  • Author

What lab does he use? There are other TBD specialty labs.

Rpm999 Contributor
Rpm999
Posted

i'll call again, what should i ask if they have? i just want to make sure it's the most accurate, but hey who doesn't

CarlaB Enthusiast
CarlaB
Posted
  • Author

I would just ask what testing they use and from what lab. Then, research the lab ... we'll help. :)

home-based-mom Contributor
home-based-mom
Posted

Here is a link to a short bio about a local television personality who was diagnosed with Lyme in 1995.

Pay attention especially to the second paragraph. That is nasty stuff! :o

Open Original Shared Link

I remember watching part of an interview a while back. She related that she went to bed feeling perfectly fine with no symptoms whatsoever and woke up paralyzed. I don't think she has any idea how she got the disease.

CarlaB Enthusiast
CarlaB
Posted
  • Author

Thank you for posting that link. I have seen that .... she was on Good Morning America and now she has a blog at her news site. It's quite a dramatic story!

Rpm999 Contributor
Rpm999
Posted

well i called the woman and she said she doesn't know, and i plan to go wednesday...she said they have/do various tests, so i should be fine right? they have specific testing in the whole place and like i said, he's had it many times so i should be fine...i hear he listens and tests for a lot, so what else do you think i should get tested for carla? because you said it sounds like i have neurotoxins and it can be many things, so just want to make sure...a full thyroid panel, check my adernals, metals, levels/minerals, fibroymyalgia, blood sugar (just in case)...what about candida/yeast, is that something that's a blood test or is it a stool test? i'm sure there's plenty of things, but i figure i want to get anything checked that can cause severe/strange neuro problems, so i can be sure...since he's supposed to listen and have a passion for it all, i figure i can kill 2 birds with 1 stone if i know what should be checked with all these symptoms

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted
  • Author

First, I should warn you, I'm herxing today and am slightly brain-dead, :blink::lol:

I think your list looks pretty complete. Metals and Lyme would be what I would be concerned about. Be sure to get a copy of all your test results.

I don't know that there is an accurate test for candida ..... but I think the test that's out there is a stool test ... maybe someone else knows.

My LLMD tested me for adrenal fatigue (it was a test done on my saliva), metals, coinfections, hemoglobin, thyroid, CBC ... maybe there was more, but I don't remember.

I hope someone else jumps in here as all LLMD's seem to do things differently, so it would be good for you to have a lot of information to draw from.

Personally, I think something must cause fibro ... sometimes it's Lyme. And I would find out the name of the lab that runs the Lyme test ... it's important to know as they are not all alike. Your doctor may even appreciate learning about IGeneX if he doesn't use it as he sounds open to learning about Lyme.

Rpm999 Contributor
Rpm999
Posted

ah thanks, sounds good...these neuro symptoms are just so complex and strange, i want to make i get things tested that need to, it's horrible just having the third person/out of body feeling and problems with your senses :(

aprilh Apprentice
aprilh
Posted

Ok, seeing a dr. Thursday and will talk to him about the lyme. Is it the CD57 test I need to make sure he does? at this point I don't know if he will use igenex, and I will ask for that one, but just in case.....

dlp252 Apprentice
dlp252
Posted

The C.D57 test just measures the amount of certain "killer" (I think that's it, lol) cells...it's a useful tool which some doctors like to use. On the OMG thread, for those of us who have had the test done, it seems to accurately correspond with how bad our symptoms were. That isn't always the case I think, but several of us had the test done and at least with those on the thread, it accurately corresponded. Those who had the lowest number were having the most problems with the symptoms. I think I had one of the highest readings at 84. Most doctors like to see a score of at least 160 I think.

The Igenix testing will be the western blots, which will test for lyme.

dlp252 Apprentice
dlp252
Posted

Here's a link to an article about the CD57 test, if it doesn't open to the correct page, the article is on page 8:

Open Original Shared Link

CarlaB Enthusiast
CarlaB
Posted
  • Author

Not all LLMD's use the C D 57 ... mine doesn't.

Rpm999 Contributor
Rpm999
Posted

i thought it was a good idea to right all my symptoms down since my memory is so shot, and wow, i'm going to have like 2 pages to show this guy :lol:

CarlaB Enthusiast
CarlaB
Posted
  • Author
i thought it was a good idea to right all my symptoms down since my memory is so shot, and wow, i'm going to have like 2 pages to show this guy :lol:

:lol: :lol: Sounds about right!

confusedks Enthusiast
confusedks
Posted

I just wanted to jump in and say about a yeast test.

My LLMD used a test called D-Arabinitol for Candidiasis (Candida) and it only came out in May of '07...I guess it's quite a breakthrough because like Carla said, there never used to be ways to really test for Candida/yeast.

He may or may not know about it...I don't know. It's a fairly new test, so don't be too disappointed if he doesn't know about it or doesn't use it, etc.

It's a saliva test. They gave me a kit and it was through BioHealth. You can google them.

Rpm999 Contributor
Rpm999
Posted

ahh thank you, i'll ask about that...but before i go, i was wondering, is it possible if you have lyme or anything similiar, to have problems detoxing? just with how things have been, and still being sick from the dye, i'm wondering if my system is just not getting rid of what it needs to and making me nothing but worst

CarlaB Enthusiast
CarlaB
Posted
  • Author

Yes, it is possible. There are a couple threads on this topic on Lymenet right now. I detox fine, but I know many don't. I don't know much about detox problems.

Rpm999 Contributor
Rpm999
Posted

i give you and many others on here so much credit, i would have never guessed how hard sicknesses like these can be, it hits you like a bomb...i've gotten so much help on here, let's just hope this doctor is what people say because so many doctors just can't comprehend basic things, and when you feel your body getting worst and rotting away, you need the best of the best

CarlaB Enthusiast
CarlaB
Posted
  • Author

I'm hopeful for you. I learned about what I had on here, so I stay on here and try to help others deal with doctors and diagnoses. :)

aprilh Apprentice
aprilh
Posted

rpm,

I have trouble detoxing. I don't know if I have lyme yet.

Kassandra,

I heard about that test on the biohealth radio show that Rachel posted. I want that test! I am going to ask for it when i go to this new dr thursday.

Everyone,

I am so nervous because this is going to be $550 out of pocket just for the first visit. That includes the dr. visit and labs. I Have already spent so much. My hubby would FREAK if he knew. We are low on money right now so I am going to have to charge it. I am sure there will be more tests on top of that considering I am having adrenal issues (i think) right now and have never been actually tested for metals. Just been going by my kids results. We would be exposed to the same things and they would get some through pregnancy as well.

I don't mind paying as long as we get somewhere! I really just have this feeling that something deeper is going on other than candida and heavy metals. So, I have got to do it......

April

dlp252 Apprentice
dlp252
Posted

April, I think you're right...and it IS a lot of money out of pocket, but the money I spent for the LLMD was the best money ever spent because he has been one of the very few who could actually tell me what is wrong with certainty (with labs to back it up).

AndreaB Contributor
AndreaB
Posted

April,

Hope all goes well. We charged a lot of stuff this summer for LED treatments. When it's your health, sometimes you need to charge it.

aprilh Apprentice
aprilh
Posted

I feel the same way Andrea. My hubby doesn't necessarily agree, though. But, I gotta do this whether or not he agrees.

I wish I could find someone that does LED and ART here!!

Rpm999 Contributor
Rpm999
Posted

well i went today, wasn't the best experience with the guy, but he tested for lyme...all he said was western blot, didn't specify, so i hope it was a good test...and free t3 & free t4, anybody know which specific thyroid things that'll show? anyways, he gave factive for a week, just to see how things are, anybody know/heard anything about it? i'm nervous taking it, just with how sick i am and how everythings bothering me, i feel so bad right now that one more bad reaction would just kill me

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.