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rinne

Tailz Tests Positive For Lyme.

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Tailz asked me to post this on this board, I am not sure whether it is okay to do so but truthfully if not, please ban me too.

i do have lyme. my coinfections are negative right now, but apparently they show up once the lyme is treated. my lyme was chronic positive and my spect scan (brain) showed that i have neuro involvement. can you let the glutenfree forum know? i hope i can get my meds covered. i'm exhausted.

So Tailz has Lyme and she wants you to know about it, she is still trying to help.

I will be tested for Lyme in the near future, in order to do that I will fly nearly a thousand miles to a clinic that will use the Igenex lab, I will do that because I am being told repeatedly NOT to trust the Lyme results coming from other labs. I know for a fact that this can be true, my friends in Colorado were tested for Lyme and the tests came back negative, it was a lab technician that looked at their blood and saw the spirochetes.

I see many people posting here with symptoms of Lyme, sore neck and jaw, hair loss, anxiety, depression, brain fog, back pain...there seems to be a lot of overlap between Celiac and Lyme and then sometimes I wonder if there are people with undiagnosed Lyme manifesting as gluten intolerance identifying everything as gluten inolerance. :ph34r:

I know when I first came to this board I was happy to have so many of my symptoms confirmed as Celiac, it all made sense. What doesn't make sense is that my digestion has improved but my health continures to sink.

My heart goes out to Tailz, I understand what it is like to feel half insane with a misery that is eating away at you and not be able to get anyone to listen. It is no wonder she felt the need to shout. It saddens me that she was shut up so quickly here, I had thought that there was some patience here for those who are ill.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Well, I'm not afraid to say that everything you (and tailz) said (that I saw, anyway) MAKES SENSE.

So far, I do not exhibit any of your symptoms except recently a sore neck, but that seems to be caused directly by some of my PT exercises for my shoulder (was using the wrong muscles to lift my arm and weights), but I'm keeping your list of symptoms. If I do develop more of them,I will also ask to be tested for Lyme.

Thank you for posting, and I hope both you and tailz feel lots better very soon!

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Guest nini

I appreciate the concern for our health that Tailz exhibited, but there were some assumptions she made that overstepped certain boundaries... I've been ill all my life, since I was a baby... I've been tested for Lyme over and over again over the years, it was one of the first things ruled out which is why the Dr.s thought my illness was all in my head. It wasn't until the GI confirmed Celiac with definitive tests that I started getting better. Sure not all of our illnesses are "just Celiac" or gluten intolerance, but we ALL don't have Lyme either. Just my two cents.

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Thanks Fiddle-Faddle.

I know I'm a bit touchy about it at the moment.

I lost a friend of thirty years the other day, she inferred that I was overly emotional which was contributing to my supposed illness and paranoid to think that I can't trust the doctors here to diagnose me. I will be polite to her if I see her again but I will never make another gesture to include her in my life.

Earlier this week my mother-in-law informed my husband that my problem is I read too much. LOL I always knew reading would get me in trouble.

Sure not all of our illnesses are "just Celiac" or gluten intolerance, but we ALL don't have Lyme either.

Thank goodness for that. :)

I am very glad that a gluten free diet has resolved your symptoms, interesting that they were looking at Lyme in your case but then there does seem to be an overlap of symptoms.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Guest nini

yes, so why were they looking for Lyme in my case... well, because I had dogs, and our dogs had tics at one point or another and rather than consider this was something I was born with, they were looking for external triggers.

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Gayle, I am glad that Carol (tailz) has now finally got confirmation of Lyme disease, and I hope she'll get the right medications and feel better soon.

Earlier this week my mother-in-law informed my husband that my problem is I read too much. LOL I always knew reading would get me in trouble.

Well, I've heard the same thing. When I told Susie (my youngest daughter) about adrenal burnout, she rolled her eyes and said, "Oh mother, you ought to stop doing all that reading on the Internet, you're getting pretty ridiculous with all the illnesses you're coming up with!"

And the next daughter (also rolling her eyes) said, "I don't even want to hear it, you can't possibly have something else wrong with you, you're getting paranoid".

But my naturopath and my doctor (who I had to go to on Friday to order tests) don't think I am being crazy at all, fortunately.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Rinne,

Sorry to hear about your friend...I know how you feel. People just dont understand sometimes because they arent in our shoes. If I wasnt living this nightmare myself....I dont know that I'd really understand it either. :unsure: I'm just glad that there are alot of people who do have compassion and whoare supportive and I just dont let the other ones bring me down. I'd make the same decision you're making now.....to not include that person in my life because frankly the lack of support would cause me stress which would then make me feel worse than I already do.

I heard about Tailz...my heart goes out to her also. There are alot of us here who continue to suffer after the gluten-free diet and Lyme is certainly one of the things that should be looked into if symptoms persist. Igenix is probably the only lab reliable as far as diagnosing Lyme and I'm so glad that she finally got her answer. It makes me angry that she, myself and who knows how many others have to fight tooth and nail just to be heard and to be offered these tests.

Its been 4 years for me and even though I've requested the Lyme test in the past its only been this new Dr. that I just saw a few weeks ago who recognized that my symptoms can be caused by Lyme. Thankfully ordering the test (from Igenix) and getting it ruled out was his #1 priority.

I've already posted that my results are negative. Even though I still dont have the correct diagnosis its the hugest load off my mind and it brings me one step closer. I'm thankful I dont have Lyme Disease but I could easily have been in the exact same situation as Tailz because of negligent Dr.'s. who arent willing to listen. Because of the progressive nature of the disease its a shame that people are going undiagnosed....the longer the Dr's ignore the patient...the harder it will be for them to fully recover.

Like I said....my heart goes out to Tailz and I hope she has the best Dr.'s to aggressively treat the Lyme now that shes been diagnosed.

Obviously not all of us have Lyme as an underlying cause or as a trigger for Celiac. However, for those who remain symptomatic and who continue to develop other intolerances and "conditions" and generally do not get better.....sometimes Celiac is not the *only* diagnosis. Its only a bloodtest to rule Lyme out....and for me it was very important to get this answer.

Not alot of people here have the same symptoms that I have but I will share this info...in case anyone reading this post can relate.

Most of the symptoms that I've had or am still dealing with are consistent with Celiac symptoms....however not all symptoms were relieved by the diet. I had to go several steps further and eliminate just about everything. There truelly isnt one food that I can call "safe" for me. I react to everything but I manage best eating only organic foods...nothing processed and I only drink purified water. I react to all airborne chemicals....especially perfumes and scented toiletries.

My Dr. stated that the 4 top reasons for this level of chemical sensitivities and food intolerances are:

Lyme Disease

Exposure to massive amounts of chemicals

Exposure to mold in home or work environment

Heavy metal toxicity (i.e mercury or lead)

In my situation I got sick immediately after having amalgam fillings removed and crowns put in.

I agree that Tailz did overstep some boundaries however, it might be very important for someone reading to know about the Lyme possibility and to know how and (more importantly) WHERE to get tested. Since these type of conditions wreak havoc on the immune system gluten intolerance is almost an inevetiable consequence for those genetically predisposed...sometimes the gluten-free diet is only a first step in recovery.


Rachel

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Well said as usual Rachel. :)

I don't believe anyone in my family has lyme, but I do like learning about things and keep them in mind for others I may run into in my lifetime.

I'm glad Tailz got the diagnosis so she can continue forward in the healing process.


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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Just wondering --why is igenex the only lab who can correctly diagnose Lyme disease? (I'm not being argumentative here, I really want to know why!) And if this is true, then, nini, was your Lyme disease ruled out by igenex? (Just wondering,not trying to say that anybody has Lyme instead of celiac.)

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I know that on the Lyme boards Igenex is the lab that is trusted, my impression is that it has been the lab of last resort for many people with Lyme and through Igenex they tested positive. There was some kind of challenge made of Igenex and their credibility because they had so many positives and when they did a double blind study Igenex came out at the top in correctly diagnosing Lyme.

I know that my two friends in Colorado who were diagnosed with Lyme were done so by a lab technician in a small hospital and that their tests came back negative but I don't know what lab the tests went to


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Lyme Disease

Prepare to be utterly overwhelmed by that site which is just links to other sites., including:

Links common to Lyme disease misdiagnosed as other diseases/conditions

Lyme Disease Misdiagnosed as Alzheimer's disease (AD) alt

Lyme Disease Misdiagnosed as Amyotrophic lateral sclerosis (ALS) alt

Lyme Disease Misdiagnosed as Fibromyalgia alt

Lyme Disease Misdiagnosed as Guillain-Barré syndrome (GBS) alt

Lyme Disease Misdiagnosed as Juvenile rheumatoid arthritis (JRA) alt

Lyme Disease Misdiagnosed as Lupus alt

Lyme Disease Misdiagnosed as Multiple sclerosis (MS) alt

Lyme Disease Misdiagnosed as Parkinson's disease (PD) alt

Lyme Disease Misdiagnosed as Trigeminal neuralgia (TN) alt

Lyme is clever and subtle in its' attack on us. It nibbles here and there and over time a pattern emerges if it is not identified right at the beginning and that seems to be the biggest problem, it is not . Perhaps people have a flu, (I felt I had the stuffing knocked out of me) and many have a history of Mono or a feeling of anxiety and some hair loss but it is not so serious and certainly you don't feel as if your health is at stake. Then that goes away and something else happens, maybe a year later, perhaps your bladder gets weaker and your PMS symptoms seems exaggerated, maybe a weight gain or loss, again nothing that makes you feel truly ill but you don't feel truly well either. Then arthritic pain, often in a place that has suffered an injury and so seems almost expected and nothing to do with the bladder problems or the irritability or the food and alcohol sensitivities or the funny tingling bands at the back of your head or the shadows flickering at the corners of your eyes. Then there is a growing band of tightness around your chest and the feeling of not being able to fully breath, heart palpitations, frustration with the smallest irritations, and the sense that your health is in real jeopardy and you go to the doctor and the doctor does a physical and sends you to have your heart checked and you are told you are fine and you go away knowing that you are not but you've been told that you are and you want to believe that. Then you start to get sick, you can't digest food, your complete gastro tract is on fire and you are melting and you go back to the doctor and they do some more tests and tell you that you are fine and just need to take the pills that they prescribe. If you are lucky and I am feeling like I might be you discover a board like this one where you learn not only how to work with your digestion but that there might be other possiblities to what is wrong with you. I'm sure you know that I am "you". :) Lyme is clever though, a friend and I spoke for five months about her illness and mine and not once did we talk about my having Lyme because our symptoms are very different. She has much more the CFS kind of Lyme and there is also a neurological Lyme that Amy Tan, author of The Joy Luck Club, has.

This is not a very good overview, I have only listed about a third of my symptoms, what I was hoping to do was to give you a sense of how it takes your health in such a stealthy way and for each person it is unique.

What are your symptoms?


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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I dont know exactly whats wrong with the traditional testing for Lyme but it just doesnt seem to be very sensitive and misses alot of diagnoses. It seemed like on the Lyme board many people went years and years suffering with no diagnosis and negative test results (some even had the telltale bullseye at some point). It was only Igenix that correctly diagnosed them .

I just got tested a couple weeks ago. My doctor only uses Igenix for Lyme testing...he said they're the most accurate...the best lab for testing. Everything I've read about the traditional tests says they're pretty useless....cant really rule it out with those tests.

My results were negative...thankfully.


Rachel

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