Western Blot for Lyme

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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1650
   Posted 10/8/2011 1:50 PM (GMT -7)   
My doctor ordered a western blot lyme test since my elisa test was equivocal. Is this test pretty good? I heard so much about the Innovex test but that is not covered under my insurance. Thanks! I should get the results next week.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2547
   Posted 10/8/2011 3:16 PM (GMT -7)   
Hi jeaneac,

Welcome to the forum! This is a great place to learn more about Lyme and to get support if you need to get treated for it.

The Western blot test is more accurate than the ELISA test but it is still not very reliable. It relies on detecting a person's antibodies to the disease, but the disease itself suppresses the immune system, so they are not always present.

Lyme Literate Doctors use the IgeneX lab because it is more accurate than the standard labs. They use the information from that along with a medical history and assessment of your symptoms to diagnose Lyme clinically. This is very important.

So when you get your test results let us know! In the meantime, you can read more about Lyme disease in the "New to Lyme?..." thread at the top of the forum.

Talk to you soon!
Co-Moderator Lyme Disease Forum

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1650
   Posted 10/8/2011 4:32 PM (GMT -7)   
Thanks so much. I am not sure if it is lyme or an AI disease or possibly both. It sounds like lyme can induce AI diseases. I'll wait to see what these results show. Last I heard there weren't too many lyme literate docs near me. I live near Jacksonville, Florida, so if anybody knows of any in the area, let me know please.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2547
   Posted 10/8/2011 6:21 PM (GMT -7)   
Well we have a few members in Florida who will no doubt be happy to help you, if it should prove necessary. You can start a new thread entitled, " Looking for an LLMD near Jacksonville, FL.

For information on finding a Lyme Literate Medical Doctor(LLMD) inyour area, please email our long time member, Dan's Mother at:
phassan@optonline.net
If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

Keep us posted!

You can also go to The Lyme Disease Association and search forLLMD's 3 times in a month. You have to register first. Here is thelink: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And AssociatedDiseases Society) doctor. The ILADS site is a great place to read toget you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Co-Moderator Lyme Disease Forum

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1650
   Posted 10/8/2011 7:36 PM (GMT -7)   
Once again, thanks so very much!!!!!
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

Siesta Key
New Member


Date Joined May 2011
Total Posts : 19
   Posted 10/9/2011 8:41 AM (GMT -7)   
Hey Jeanne,

I was just diagnosed with Lyme after suffering for five years and seeing over 20 docs. I am currently living in southeast Georgia and recently moved from the Tampa area.

I was diagnosed with UC in the late 90's and took the standard treatment (Asacol, Canasa-salicylates for nine years). I developed worsening GI symptoms, nocturnal myoclonus, and a long list of symptoms that left me non-functional in 2006.

I spent thousands of hours researching for answers and kept a diary of foods, meds, cosmetics and reactions (when and how severe). After being evaluated for celiac by a top doc in Atlanta, she declared me to ne gluten intolerant. I went on to discover that I was having severe reactions to salicylates (meds, foods, cosmetics, supplements), MSG, nitrates, preservatives, dairy. My myoclonus symptoms and GI symptoms were worse when eating these foods and exposed to these products. I also had a great integrative peds doc in Tampa run a Comprehensive Digestive Stool Analysis on me. he uncovered dysbiotic bacteria in my gut and treated me for it. Most conventional doctors do not even use this tool and it is critical if you have IBD.

When I determined that I was intolerant to salicylates two years ago, I convinced a GI doc to run the Promethius Lab (you mentioned) and I tested negative for IBD!! MY clinical symptoms look like IBD but I still do not know if I truly have it...or if a bacteria (i.e. Lyme) could have caused or worsened it.

I was tested for Lyme last May (regular, inaccurate Quest Labs Western Blot) and I had zero bands (negative results). However, I persuaded my doctor to order the Igenex panel last month and my recent test results are positive.

If you really need to know, it is worth paying the $$$ to find out. if I had known five years ago, my life would be so different (better right now).

I have been in remission for 2.5 months and I attribute it to taking DM glycine, along with several other supplements. Glycine helps to detox chemicals from the liver (I have multiple chemical sensitivity-probably caused by Lyme) and boosts the immune system. I would definitely suggest a serious diet change to help with your symptoms.

I hope this helps you as I understand what you are dealing with. Most GI docs do not have any education on Lyme or the CDSA test.
I do not know how I contracted Lyme but my husband and I used to go hiking in georgia and we walked at a few state parks in Florida (my guess-a Fl state park).

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1650
   Posted 10/9/2011 9:20 AM (GMT -7)   
Hi Siesta! Thanks so much for your reply! When I first found the rash, it was on my back hip so I couldn't see it well but we lived out in the country in georgia. I guess you saw that my prometheus was positive for crohn's but my biopsies didn't support it. I do have a lot of joint pain. I'll see what these western blot results say and talk to my PCP about Igenex labs.

I was telling my hubby that if I did have lyme, I suspect that my body fought most of it off but I've read it often causes auto immune diseases. My ANA was positive and I am sensitive to the sun like a lot of lupus patients. One rheumy thinks I have a mixed connective tissue disease and another says inflammatory arthritis. My rheumatoid factor is also right on the borderline of being positive. That ran in my family.

Yea, I didn't have any good bacteria in my stool either. I had a test run by great plains labs and I take VSL #3, the strongest probiotic you can take. Stomach is pretty good now.

What kind of diet changes did you make? Did you go gluten free? I keep a pretty healthy diet with lots of veggies and lean meats, no fried food except the occasional home made french fry.

I live in a town that has bad pollution and I work in an old renovated building that I think they covered up a bunch of moldy old walls in. Also, I notice an increase in symptoms when the rain fronts move though.

Thanks again for your response.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 15334
   Posted 10/10/2011 8:44 AM (GMT -7)   
Hi Jeanneac,
Please remember that any doctor that you see that does not specialize in Lyme Disease will not think of Lyme Disease as a source for your issues - so you will get other diagnoses in an effort to explain what is going on. If you want to rule out Lyme, then you need to see a Lyme Specialist, just as you have chosen to see a Rhuemy for your joint issues, and not a gp.

Just a thought to keep in mind as you go about trying to find out if you have an AI issue.
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1650
   Posted 10/12/2011 10:58 AM (GMT -7)   
I think my PCP is very open, she is an ARNP. I am sure if I want the Igenex test, she'd order it. I am waiting to see how my test comes back from LabCorp. I went to the gyn this week and now I have lichen sclerosis. I've read that can be associated with borrelia (sp?). I think I am going to e-mail some of the folks you recommended and get a LLMD. Thanks again for all your support. This is a good forum.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, Colon resection Nov. 2010, now in remission!
inflammator arthritis, type 2 d, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, synthroid, plaquenil, lactose intolerant, benicar
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed r
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