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Igenex test results. Need LLMD in NC

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Posted 9/12/2015 1:33 PM (GMT 0)
Recently had Igenex test done. Results are:

IFA>90 Positive

IGG (Igenex IND, CDC NEG)
31+++ (waiting on epitope results)
39 IND
41++
58++

IGM
31++ (waiting on epitope results)
39IND
58+
66+

CD57 41
Coinfections Bartonella and Babesia were negative.
HLA Gene 15-6-51 (one copy) Chronic Lyme Gene
MTHFR a1298c (one copy)

Currently waiting on Heavy Metal test results too. My daughters hair test showed 96th percentile for Uranium and Copper. Those are the two metals in our well water.

Current Lyme NP started me on antibiotics (starting 4th week). Biaxin with pulsing plaquenil (3days)metrodinazole (4 days). Haven't noticed much change. No real major herxing. Did have a lymph node pop out in neck.

Detox baths, dry brushing and just started chlorella (1 tsp in water) daily.

Symptoms are that I have a mild numbness all over body, small tremor in hands, left leg weakness, cracking neck, fatigue, frequent urination, had weird/itchy rash behind ear that went onto face shortly after onset, limbs falling asleep at night, buzzing/inner vibrations in feet and sometimes trunk. A few years ago had a 6 month spell of body itching at night. Many allergies and rosacea. Recently (Jan 2015) had abnormal pap (no HPV) and yeast infection. Few months later numbness started in toe and progressed over entire body. Never pulled a tick off or noticed a rash.

Does this look like lyme? Is there any instance where it could be not? I am concerned that this is heavy metals causing everything. If it is Lyme, I am looking for a good LLMD in NC (live in Greensboro) can travel to Raleigh or Charlotte.

Any advice or info would be much appreciated!
Posted 9/12/2015 1:51 PM (GMT 0)
Welcome!

Sorry for the reason you're here but, glad you found us.

Here's a link for proper evaluation of your WB results:

lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

And, here's a link that includes PubMed references to confirm what's shown in the first link I shared:

www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

Your symptoms sound like Lyme and your WB test confirms it.

Please know that the WB test measures antibody response. Well, no one with Lyme symptoms will mount a false antibody response. You have it...and I'm sorry.

You could have heavy metal issues exacerbating things. Lyme bacteria form biofilm with heavy metals.

Hope you've had a chance to review our "New to Lyme? Start Here!" thread that sits on top of the forum. There's info about test interpretation, symptoms lists, detoxing suggestions and more.

And, "speaking" of detoxing, if you don't have an established detox protocol, I suggest you start one....and continue to add methods as you move along with treatment.

You see, as the bugs are killed, toxins are released and those toxins can cause an increase in symptoms. By employing several different types of detox methods, you can help your body clear those toxins and reduce your symptoms.

While you can find it in the New to Lyme thread, I'm sharing a link here to a site that has some great detox suggestions:

www.tiredoflyme.com/detox-methods.html

Please enable your email option (within your profile) so members can send you contact info for LLMD's in your area. Forum rules prevent sharing that type of information in the open forum for privacy reasons.

Another way to find a LLMD would be to use the physician referral service that ILADS offers:

ilads.org/ilads_media/physician-referral/

You really want to see an ILADS-trained doctor because they know how to diagnose and effectively treat.

I'm sure others will be along shortly to help.

Best wishes to you moving forward!!
Posted 9/12/2015 2:41 PM (GMT 0)
Maybe I'm in denial, but all the bands I'm positive for seemingly can cross-react (except for the IND on 39) And I feel like it's strange that I have not herxed with antibiotics. Also, from what I understand heavy metals can cause CD-57 to lower as well. If the 31 band epitope comes back Negative, I am not sure what to think. If positive then I will just accept and move on.

I had a specific "attack" when the numbness started. I was freezing and had more brain fog and fatigue. It has slowly gotten better (while I was not on antibiotics) but my all over numbness, limbs falling asleep at night, and internal shaking have persisted. Has anyone ever had ALL over numbness (even inside my nose and my gums feel funny!). It seems very much like Small Fiber Sensory Neuropathy. Has anyone had the numbness go away on treatment?

If this is Lyme, perhaps I am not on the right antibiotics. I am not 100% confident with my LD NP. She told me I have chronic EBV but upon looking closer at my results, it just appears that they show past exposure. Normal IGM, Negative early antigen, High VCA IGG (>600), High Nuclear Antigen (29.1). I am repeating CD-57 early next month.
Posted 9/12/2015 5:07 PM (GMT 0)
Not everyone herxes on antibiotics. Some people just naturally detox well. In other instances, they need to be on different meds. Most LLMD's switch things up if a patient isn't responding to a particular regimen after 4-8 wks. Response = herx or improvement....preferably both

CD-57 has been discounted as a tool for Lyme evaluation.

Perhaps that "attack" was your body's response to a tick bite (or a fly bite...or a mosquito bite...or the bite of virtually any biting insect - Lyme bacteria have been found in them all)

There's a cause for Small Fiber Sensory Neuropathy....and, in your case, it could very well be your Lyme.

You do have symptoms that are affecting various body systems....that's hallmark for Lyme. The fact that some come and go is also hallmark Lyme.

While I haven't had whole-body numbness, I've had numbness in certain body areas that got worse with treatment. It's much improved and I'll only have occasional numbness as part of a herx but it hasn't been part of my baseline symptoms for over 6 months.

I totally relate to the feeling of not being 100% confident with medical practitioners treating Lyme - even some LLMD's.

Most people find the need to research extensively which enables them to help form a successful treatment protocol with their LLMD.

If your NP isn't trained by ILADS, you might want to consider a second opinion from a medical professional who is.

Post Edited (cd3764) : 9/12/2015 11:11:27 AM (GMT-6)

Posted 9/12/2015 5:26 PM (GMT 0)
Kyo-31 which you are triple positive is Lyme specific. Specific means it ONLY happens when Lyme disease is present. Borrellia or Bb is Lyme disease

31 outer surface protein A (OspA), specific for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection

58 unknown but may be a heat-shock Bb protein

Please understand that when band 41 says first to appear that by first it doesn't mean right after bite it just means it's commonly the first your immune system see's. Lyme does a terrific job of hiding from our immune systems. If your immune system is working great you could have no major symptoms for a long period and then a stressful event could send your immune system crashing and symptoms pouring in.

It's very common to question this but your body could not have created antibodies to Lyme if it wasn't present in your system.
Posted 9/12/2015 5:41 PM (GMT 0)
Thank you for the responses. I actually thought 31 could cross-react, hence the 31 epitope test. I am waiting on the results.

I am hoping to switch up treatment after 4 weeks. Maybe Doxy/biaxin/grapefruit seed extract? Not sure I want to do Biaxin again though. What combinations seems to be most helpful with numbness/buzzing in feet?
Posted 9/12/2015 5:47 PM (GMT 0)
Also cd3764, how long have you been treating Lyme for? My NP mentioned I may deal with this for life due to the HLA 15-6-51 gene.
Posted 9/12/2015 5:58 PM (GMT 0)
kyo07 - I have read that band 31 is specific...and yet Igenex suggested my husband have the Eptiope test done on his band 31 as a confirmation test...so I'm not sure why Igenex is saying that band 31 can cross-react....maybe pressure from the non-believers - the IDSA - and they have just agreed so as not to make waves?
When my husband had it done, it came back positive.

If it doesn't come back positive...you still have shown a very strong antibiody response on your WB. Add your symptoms to the picture....it's more than enough to diagnose you with lyme disease.

Don't let a negative Epitope test - sway your decision...(if that's the case)

I have buzzing, body vibrations - one of my first and worst symptoms....treating and killing the bacteria is what will work. (I have tried different supplements...to no avail) let me know if you find something that helps!!
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