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GiGi73
New Member


Date Joined Apr 2018
Total Posts : 5
   Posted 4/19/2018 5:29 PM (GMT -6)   
Hey everyone,

This is my first post and hoping you all can help me decipher my Igenex western blot results.

I'll say first that the results were negative. Here's what it showed though:

On the IGG WB:

23-25 kDa: IND

41 kDa: +

On the IGM WB:

41 kDa: IND

Just wondering if I could in fact have lyme.

My symptoms (for 25 years) are many:

-Muscle pain in most of my body.
-Burning nerve pain in legs, feet and hands.
-Severe fatigue
-Painful neck and jaw
-Heart palpitations
-Not much stamina to do anything for very long.
-If I try to exercise (a simple walk) for more than 15 minutes, I 'crash'. It feels almost like what I think a panic attack must feel like (even though I don't believe I've had one), my pain level doubles within seconds, and almost hyper-ventilating.
-And, the last couple of years I've had constant sore throat and burning tongue (acid reflux?) and I've lost about half my hair.

I was diagnosed with Fibromyalgia 20 years ago and tested negative for MS, RA, Lupus and basically all my basic lab reports were fine.

Can anyone relate to these symptoms? Should I find a LLMD?

Is it too late after 25 years???? I don't feel like I can live like this anymore.

Side Note: I've had stomach problems for a few years too. I realized it was gluten and have eliminated this from my diet completely and stomach and digestive issues are a lot better.

I had a scope down throat to test for celiac disease (gluten intolerance) recently and it showed some signs of having celiac, but biopsies they took didn't show this however. So, it was inconclusive. (Celiac can sometimes cause some of the symptoms that I have).

Does anyone have lyme AND gluten issues??

If you've read this far, I appreciate it!

Please let me know your expert lyme opinions!

Jen





smilewinkgrin smilewinkgrin

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 4/19/2018 6:06 PM (GMT -6)   
Hi Jenn, Welcome to our community!

Your timeline of symptoms plus the Ind band 23 (Lyme specific) warrants going to a LLMD.

No, it’s not too late!


Btw - when testing for Celiac, did you not have blood work done for the antibodies? It’s called Tissue Transglutaminase antibodies - tTg

- my son has celiac disease and that’s how he was diagnosed - we chose to not have the biopsy done.

Many Lyme patients feel better on GF diet.

The Lyme treatment clinic I go to suggests a GF diet.
I have been gf for awhile now.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 4/19/2018 6:10:46 PM (GMT-6)


Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 4/19/2018 6:55 PM (GMT -6)   
I think you are fully justified in seeking out an LLMD. Your symptoms all sound very "Lyme and Co-infections" to me!

I've had all your listed symptoms and more, and have been diagnosed with borrelia, bartonella, babesia and ehrlichia. An LLMD can help you determine and treat all those things.

I'm do not have celiac disease, but have gone gluten free. I want to say it has made a difference in my physical joint pain and stiffness the most...but that could also be treatment that helped.

Good luck to you!
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

GiGi73
New Member


Date Joined Apr 2018
Total Posts : 5
   Posted 4/19/2018 8:17 PM (GMT -6)   
Hey Girlie,

Thanks for your reply!

I probably need to go to an LLMD. It's just the cost and I'm not sure how to find a good one.

I'm in central Illinois and I've heard there are no good ones even in the Chicago area. I think I'd have to go half way across the country. I've researched this a bit, but cost is holding me back.

And then there's the question of using antibiotics (which long term, scares me a bit) vs. herbal remedies vs. boosting immune system, detox, etc. etc. It's seems really over-whelming.

Can I ask, does your son have any unusual celiac symptoms? I've heard of some people having stomach problems only and others having a whole slew of others: fatigue, neuropathy, etc.

Oh...I didn't have the blood test for celiac because I had already been gluten free (yep, didn't know this when started the diet) which makes the test inaccurate, and unfortunately am not able to eat gluten again for the test. Makes me soooo sick!! I may look into the genetic test for celiac though.

Thanks again!

GiGi73
New Member


Date Joined Apr 2018
Total Posts : 5
   Posted 4/19/2018 8:25 PM (GMT -6)   
Hey Runninheid,

Glad to see that you've gotten better, especially after so many years. Gives the rest of us some hope.

I need to also do the testing for the co-infections, at some point hopefully I'll be able to.

Thanks!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 4/19/2018 8:33 PM (GMT -6)   
My son was undiagnosed until he was 14 years old.

He had symptoms of iron deficiency ( his ferritin was rock bottom) and strangely - hyper mobile joints, and muscle weakness.
------------------------------------------------------------------------------------------------------
EDIT TO ADD: Constipation - had it from very early - toddler age....went away once off gluten.
We overlooked Celiac because I always read diarrhea was associated with it.
---------------------------------------------------------------------------------------------------------

As soon as he had the antibodies test showing that he has Celiac, we took him off the gluten immediately.

Then a couple months later he had an appt with the Pediatric Gastro and they suggested the 'gold standard' test of the biopsy...but he would have to go back on gluten and eat a significant amount daily for at least a month.

We decided we didn't need the 'proof' of intestinal damage and didn't want to purposely damage his intestine... we had a discussion with our son (who did not want the biopsy done) that we didn't need anymore proof, but he had to promise he'd be gluten free the rest of his life....and he agreed.

We did later get enough 'proof' as he eventually had blood work showing very low antibodies and his ferritin came up.
He also doesn't have flexible joints anymore. The Dr's say that has nothing to do with it...but we believe it does.
He did have one slip-up for a period of time in high school...and it was caught on a blood test. nono
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 4/19/2018 8:42:45 PM (GMT-6)


acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 4/19/2018 8:38 PM (GMT -6)   
A few of the herbs in Buhner's protocol are immunomodulators, they can help with a wide variety of conditions. I wish I had tried them before antibiotics.
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