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susieg_1

It's A Miracle!

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I recently tested positive for Lyme disease through IGeneX labs western blot. My PCP started doxy treatment as soon as results came back positive. I have been on doxy 300mg per day and after 8 days I feel great!!! No herx and symptoms are quickly dissapearing :D I haven't had to take a daytime nap the past 2 days after napping daily for the past year. Muscle/joint pain almost gone totally, can walk up stairs, bend over and get out of a chair with ease. Irritability gone, I feel almost giddy!!! Short-term memory improved greatlly as has libido and sense of humor!!! I can't beleive it!!! Yahoooooo!!! :P


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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Awesome Susie!!! Congratulations. :)


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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:) Hey that sounds like a dream come true. Why do regular Doctors always turn me down when I ask for a test, I have tons of symptoms? We have spent so much money on Doctors, labs, surgeries and meds , now the gluten-free food ( to tiered to shop) so I get the ready made stuff for now. Any way how can I get my Doctor to test me? He says your symptoms are not indicative of........ fill in the blank. I had to self Dx Celiac before he ran the test.

gluten-free/CF 5/8/08

Multiple food Allergies

Chemicle Sensitivity Syndrom

I suposedly have IBS

Psilly page member

Crohns

Celiac (duh)

"My llamas are in me head... "

-Llama`Llady

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:) Hey that sounds like a dream come true. Why do regular Doctors always turn me down when I ask for a test, I have tons of symptoms? We have spent so much money on Doctors, labs, surgeries and meds , now the gluten-free food ( to tiered to shop) so I get the ready made stuff for now. Any way how can I get my Doctor to test me? He says your symptoms are not indicative of........ fill in the blank. I had to self Dx Celiac before he ran the test.

I ordered western blot from IGeneX labs.

when kit came I dropped lab slip off at my dr office and called later in the day and receptionist said it was signed. I took whole kit and lab slip to my local hosp. where blood is drawn, the phlebobomist drew blood and they even had it picked up at hosp. by fed ex. two weeks later results were in Positive and Dr perscribed doxy. She had said previously that Lyme was probably not what I was suffering from as there is no Lyme in NY. And if I wanted to have rheumatologist give me blood test next visit I could. Of course rheumy would have ordered standard test.

Try ordering western blot and give Dr lab slip!! hth


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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YAY, YAY, YAY!!!!!

:) Hey that sounds like a dream come true. Why do regular Doctors always turn me down when I ask for a test, I have tons of symptoms? We have spent so much money on Doctors, labs, surgeries and meds , now the gluten-free food ( to tiered to shop) so I get the ready made stuff for now. Any way how can I get my Doctor to test me? He says your symptoms are not indicative of........ fill in the blank. I had to self Dx Celiac before he ran the test.

Please see the Lyme Disease thread under Leaky Gut on this forum about testing ..... regular docs generally will not test for Lyme, or if they do will not use the right labs. There is a political battle within the medical field regarding Lyme much like the one in the dental field regarding mercury.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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:) Hey that sounds like a dream come true. Why do regular Doctors always turn me down when I ask for a test, I have tons of symptoms? We have spent so much money on Doctors, labs, surgeries and meds , now the gluten-free food ( to tiered to shop) so I get the ready made stuff for now. Any way how can I get my Doctor to test me? He says your symptoms are not indicative of........ fill in the blank. I had to self Dx Celiac before he ran the test.

Yes, unfortunately when it comes to some conditions like lyme, we are mostly on our own. I was very very fortunate to have gone to my LLMD without a clue I had lyme, for help with the chronic pain. I was hoping for guidance for taking some supplements that might ease the pain. He immediately suspected lyme, later confirmed via testing and clinical response.

I am very grateful.

But a number of people have been quite successful ordering the kit first and asking their doctor to run it. Hope this might work for you.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Yes, unfortunately when it comes to some conditions like lyme, we are mostly on our own. I was very very fortunate to have gone to my LLMD without a clue I had lyme, for help with the chronic pain. I was hoping for guidance for taking some supplements that might ease the pain. He immediately suspected lyme, later confirmed via testing and clinical response.

I am very grateful.

But a number of people have been quite successful ordering the kit first and asking their doctor to run it. Hope this might work for you.

I think the reason for this is because the insurance companies are left out of the mix when patient orders and pays for test kit out of pocket.


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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I think the reason for this is because the insurance companies are left out of the mix when patient orders and pays for test kit out of pocket.

Yes, IGeneX expects to be paid up front ... but having the kit sent to you (you still have to have a doctor send it in), insures that they use the right lab. No matter if the doctor has the IGeneX kit on hand like my LLMD does or if you have it sent to you, either way, you pay for this test up front.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Yes, IGeneX expects to be paid up front ... but having the kit sent to you (you still have to have a doctor send it in), insures that they use the right lab. No matter if the doctor has the IGeneX kit on hand like my LLMD does or if you have it sent to you, either way, you pay for this test up front.

But well worth the money!!!


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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Yay Susie!!!!! I am sooooo glad you are feeling better!!!!

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Yay Susie!!!!! I am sooooo glad you are feeling better!!!!

Thank you all for your good wishes!!! :D I am continuing to feel improvement although not back to my old self yet by any means. Am praying for continued recovery and think that I may have gotten lucky. It is possible I do not suffer from coinfections as so many on this forum do. I worry that when my PCP decides to stop antibiotics I will revert to suffering symptoms again. I printed ILAD reqs for her that clearly state treatment should continue even after symptoms dissapear. I am afraid she will follow typical protocol and not be receptive to following up with continued abx :angry:


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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Mamaw,

I believe it's around $200 for the Western Blots (IgG/IgM). Both would be needed.

Susie,

I usually just read along on the lyme thread........great to hear you are doing so much better. :)


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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Susie, if you are forced to quit the antibiotics you should most likely get yourself onto an herbal protocol rather than going without any treatment to try to help prevent the relapse that is common.

Sherry


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Susie, if you are forced to quit the antibiotics you should most likely get yourself onto an herbal protocol rather than going without any treatment to try to help prevent the relapse that is common.

Sherry

thanks Sherry, I saw my PCP last week and I feel that she may be willing to continue treatment until symptoms are gone. She will happily refer to me to a LLMD a few hours away that I learned of through this forum.

We agreed that as long as the treatment she is providing is working then I don't need LLMD right now especially as my insurance won't cover the cost. I would like to know more about the herbal protocol though as I am feeling so good right now it would probably be a good time to start herbal treatment. My PCP is being pretty cool about the Lyme so far :D

I have been feeling really good lately, I even ate enchiladas at a local mexican restuarant 3 days ago and no reaction at all!!! I am sure there must have been some cc as the cook didn't even know what gluten is and I could not explain because of language barrier. I haven't eaten anything that I haven't cooked myself in almost a year now! It was so nice to have a waitress and a cook, and the enchiladas were awesome! :rolleyes:


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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I can't believe that this thread may be the answer to all my problems.

I lived in Maine 3+ years ago and now live in western Colorado. Maine=mod/high risk for lyme and Colorado no/minimal risk for lyme. I've been tired for years now. A current prednisone course is helping with the joist pain. I've tried to come off the pred twice in the last 3 weeks with return of nearly debilitating total body/joint pain, among many of the other lyme symptoms. I will be ordering the Western blot from IGENEX ASAP and will be TELLING my doctor to sign the form.

I will be moving to Denver as soon as I sell my house in Grand Junction, are there any lyme disease specialists in either of these areas.

I've been in health care since the age of 20, and will be 40 this year, as a respiratory therapist and a registered nurse. I can tell you many MDs are very overworked, underpaid, and just don't give a sh*t. Just think of the worse student in school you can remember and that could be you MD, you'll never know!!! The current health care system is in a very bad way at the moment. Look at todays news 2 different people die in an emergency room with on looking health care professionals, it's disguising. Thanks to the internet we(the public) need to almost take care of ourselves these days. I saw my MD twice in the last couple weeks for a total of $150 for less than 5 minutes each visit.

A BIG thanks in advance if my testing helps me to get the RIGHT treatment, finally.


Chris RN, RRT-NPS, AE-C(Respiratory therapist, Registered Nurse, Asthma Educator-Certified)

HTN: 1996

Asthma: 2000 (Never had methocholine Chanllege)

Celiac: 2001 (direct biopsy via endoscopy)

Major Sinus allergies: My whole life, but getting worse, even after surgery.

Insomnia: 2006 (On Ambien)

Feeling of Chronic Fatigue: since 2006(Frequent sleeping on the couch in the middle of the day)

Going for sinus and food allergy testing on 7/16/2008

SUSPECT THAT I MAY HAVE LYME DISEASE FROM LIVING IN MAINE 3.5 YEARS AGO, ORDERING IGENEX

WESTERN BLOT 7/3/2008.

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I'll be calling IgeneX in the morning, but some questions.

Did you call before ordering the tests?

Why did you go straight to western blot or did you also do ELISA?


Chris RN, RRT-NPS, AE-C(Respiratory therapist, Registered Nurse, Asthma Educator-Certified)

HTN: 1996

Asthma: 2000 (Never had methocholine Chanllege)

Celiac: 2001 (direct biopsy via endoscopy)

Major Sinus allergies: My whole life, but getting worse, even after surgery.

Insomnia: 2006 (On Ambien)

Feeling of Chronic Fatigue: since 2006(Frequent sleeping on the couch in the middle of the day)

Going for sinus and food allergy testing on 7/16/2008

SUSPECT THAT I MAY HAVE LYME DISEASE FROM LIVING IN MAINE 3.5 YEARS AGO, ORDERING IGENEX

WESTERN BLOT 7/3/2008.

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I'll be calling IgeneX in the morning, but some questions.

Did you call before ordering the tests?

Why did you go straight to western blot or did you also do ELISA?

I don't have lyme, but would say if money is an issue that the western blots are definately more important. Lyme can cause intolerances on it's own. An IgG ELISA may be beneficial to pinpoint foods to begin with, but may not be accurate if it's a compound in foods and not the food itself that is causing the problems.


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 can't believe that this thread may be the answer to all my problems.

I lived in Maine 3+ years ago and now live in western Colorado. Maine=mod/high risk for lyme and Colorado no/minimal risk for lyme. I've been tired for years now. A current prednisone course is helping with the joist pain. I've tried to come off the pred twice in the last 3 weeks with return of nearly debilitating total body/joint pain, among many of the other lyme symptoms. I will be ordering the Western blot from IGENEX ASAP and will be TELLING my doctor to sign the form.

I will be moving to Denver as soon as I sell my house in Grand Junction, are there any lyme disease specialists in either of these areas.

I've been in health care since the age of 20, and will be 40 this year, as a respiratory therapist and a registered nurse. I can tell you many MDs are very overworked, underpaid, and just don't give a sh*t. Just think of the worse student in school you can remember and that could be you MD, you'll never know!!! The current health care system is in a very bad way at the moment. Look at todays news 2 different people die in an emergency room with on looking health care professionals, it's disguising. Thanks to the internet we(the public) need to almost take care of ourselves these days. I saw my MD twice in the last couple weeks for a total of $150 for less than 5 minutes each visit.

A BIG thanks in advance if my testing helps me to get the RIGHT treatment, finally.

I agree with your assesment of most Dr.'s lack of caring about patients. I am fortunate to live in a small town where everyone knows everyone else and my PCP is a community member whose patients are her neighbors. I think the lack of caring comes from the impersonal nature of large communities. It is not just Dr's that don't care about fellow Americans, look at the news report of the gentleman hit by car as on-lookers watched and just kept going. I think it is vital to the future of the U.S that people start looking out for each other because big business, including the health care system, and our government, sure isn't going to. Thank God for small-town America!!

I understand that the western blot is the most sensitive Lyme test available and that is why I ordered the IgG and IgM from IGeneX. Call and order the test kit, have it sent to your home, no cost untill you send blood samples back to the lab.

The lab wil not process your sample without payment included with samples. The people at IGeneX are very helpful, and you can call them with any questions that you may have. If you can include your Dr.'s fax number on the form then results can be obtained faster then if they have to be sent snail-mail. hth :)


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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I don't have lyme, but would say if money is an issue that the western blots are definately more important. Lyme can cause intolerances on it's own. An IgG ELISA may be beneficial to pinpoint foods to begin with, but may not be accurate if it's a compound in foods and not the food itself that is causing the problems.

I am of the opinion that my gluten intolerance is a complication of Lyme and not celiac or a true food allergy/intolerance. As a matter of fact, after 5 wks of antibiotics treatment for Lyme, I actually ate in a restaurant where I know that cc was an issue and have not had a reaction!! Many of my Lyme symptoms have lessened in severity since treatment began including muscle/joint pain. Not yet brave enough to intentionally gluten myself and see if I can tolerate gluten now, too much going on in my life right now to suffer from a major reaction.

But, I will be intentionally ingesting gluten as soon as I know I have a few days free of any obligations.


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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Susie,

Were you diagnosed with celiac by colonoscopy? I had a colonoscopy in 2001 and the GI said I had celiac disease. I'm guessing I do have celiac, because I didn't live in Maine till 2004. I was in Colorado from 1999-2001, Saudi Arabia 6 months of 2001 then back to Colorado, early 2004 to fall 2004 Maine, and have been in western Colorado till now.

I would almost bet ever penny I have that my IgeneX western blot will come back positive for Lyme.

The weird thing is that I glutened up at Burger King several months back with no real celiac symptoms?


Chris RN, RRT-NPS, AE-C(Respiratory therapist, Registered Nurse, Asthma Educator-Certified)

HTN: 1996

Asthma: 2000 (Never had methocholine Chanllege)

Celiac: 2001 (direct biopsy via endoscopy)

Major Sinus allergies: My whole life, but getting worse, even after surgery.

Insomnia: 2006 (On Ambien)

Feeling of Chronic Fatigue: since 2006(Frequent sleeping on the couch in the middle of the day)

Going for sinus and food allergy testing on 7/16/2008

SUSPECT THAT I MAY HAVE LYME DISEASE FROM LIVING IN MAINE 3.5 YEARS AGO, ORDERING IGENEX

WESTERN BLOT 7/3/2008.

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Were you diagnosed with celiac by colonoscopy? I had a colonoscopy in 2001 and the GI said I had celiac disease. I'm guessing I do have celiac, because I didn't live in Maine till 2004.

If you do in fact have celiac or a known gluten intolerance with a celiac gene then you would definately need to remain gluten free. Sherry is one who has celiac and lyme. There are others (like Carla) who don't have the celiac genes that are doing fine on gluten now.


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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Were you diagnosed with celiac by colonoscopy? I had a colonoscopy in 2001 and the GI said I had celiac disease.

I'm not sure why the GI would tell you that you have Celiac based on the results of a colonoscopy?? :huh:

The damage caused by Celiac is in the small intestine...and cannot be determined via colonoscopy.

You would need an endoscopy/biopsy....not a colonoscopy.

Sounds like you were misinformed by this GI.


Rachel

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Dear Rachel,

That would explain why the GI doctors missed mine. I had a colonoscopy, endoscopy, intercolisis, gastric emptying study and blood work done when I was up at IU Med in 2001. I bet anything they did not do a biopsy, because that GI doctor was convinced there was no way I had Celiac. She also told me you cannot poop out food whole. We all know that is wrong! Doctors are so arrogant, and they think they know everything! It is absolutely infuriating.

Sincerely,

Jin


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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