Only IgG 41 reactive, but feeling some Lyme symptoms

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DougFresh
New Member


Date Joined Aug 2016
Total Posts : 18
   Posted 8/9/2016 7:44 AM (GMT -6)   
Hi everyone,

Back in the summer of 2015 I started feeling the following symptoms: lightheaded, pressure in my head, and vision which I can only describe as "not normal". I had a Western Blot test which only showed IGG 41 reactive.

After my symptoms continued and this year I came down with depression, anxiety, brain fog and (indoor) light sensitivity, I was tested for Lyme a few more times. Here is my test history:

June 2015: Western Blot, only 41 KD (IGG) reactive, all other IGG and IGM nonreactive
March 2016: EIA W/RFL WB, .53 (< or = .90 negative)
July 2016: EIA W/RFL WB, .62 (notice the increase)
July 2016: Western Blot, only 41 KD (IGG) reactive, all other IGG and IGM nonreactive

I don't know if Epstein-Barr has anything to do with Lyme, but the March testing also revealed that I had EBV antibodies for Viral Capsid Antigen IgG (>750.0 U/mL), Viral Capsid Antigen IgM (44.0 U/mL or greater), Antibody to Nuclear Antigen IgG (45.6 U/mL), and Antibody to Early D Antigen (EA-D), IgG (11.0 U/mL or greater).

If the IGG 41 band is not Lyme, what could it be? In March I also tested negative for syphilis:

Syphilis EIA Screen, 0.26 (Negative - <=0.90).

I would love to hear any opinions from Lyme-knowledgeable folks. Thanks very much.

Post Edited (DougFresh) : 8/9/2016 6:49:03 AM (GMT-6)


Denikeef
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Date Joined Aug 2015
Total Posts : 1092
   Posted 8/9/2016 9:42 AM (GMT -6)   
Welcome to our forum!

I am sorry that you are dealing with these things but I am so glad you posted. There are so many knowledgable people on here who really care about what you are going through.

41 kDa is Lyme specific, meaning that if it was positive it can't be anything else.

Who did you test with? With Lyme we always suggest testing with Igenix. It specializes in Lyme detection.

With the symptoms you have and the positive 41, it would be wise for you to find a Lyme Literate Medical Dr. (LLMD). Lyme is a clinical diagnoses but most Drs. are not knowledgable in Lyme. If you need help with that title a post with "Looking for LLMD in_____ state or province.

I would also advise you to read through the "New to Lyme-start here" It is full of information that will be helpful for you!

Feel free to ask any questions you have.

Wishing you better health!
Lyme Moderator

Tested Igenix positive for Lyme March 2016.
Lyme symptoms for possibly 40+ years but severe in the last 5 after traumas to the system.
Currently treating with Buhner's Protocol for Lyme and Bart while waiting for a LLMD visit.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 8/9/2016 9:45 AM (GMT -6)   
Hi DougFresh!
Welcome to our community! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

The testing doesn't mean you don't have Lyme, it only means you aren't producing enough antibodies to get a positive test. While you may not have Lyme, your symptoms are certainly lining up to point to it.

Do you see an ILADS trained LLMD? If not, now's the time to see one as they will evaluate you and determine if you have the symptoms and need treatment. We can likely help you find a LLMD if you need one - just let us know.

Many of us have high EBV titers, that's because Lyme lowers the immune function - which is why so many can't test positive for Lyme - and so any viruses that you have will be much more active as well. During your healing, you will have to address the viral components of your infections as well.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

PeteZa
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Date Joined Jul 2015
Total Posts : 9729
   Posted 8/9/2016 10:14 AM (GMT -6)   
Curious as to what lab did the testing.
Lyme Moderator

DougFresh
New Member


Date Joined Aug 2016
Total Posts : 18
   Posted 8/9/2016 10:19 AM (GMT -6)   
Denikeef said...
41 kDa is Lyme specific, meaning that if it was positive it can't be anything else.


Are you sure? Everywhere else I've read that 41 is the band that is not specific to Lyme.

Denikeef said...
Who did you test with? With Lyme we always suggest testing with Igenix. It specializes in Lyme detection.
With the symptoms you have and the positive 41, it would be wise for you to find a Lyme Literate Medical Dr. (LLMD). Lyme is a clinical diagnoses but most Drs. are not knowledgable in Lyme. If you need help with that title a post with "Looking for LLMD in_____ state or province.


The lab that did my testing was Quest Diagnostics in New Jersey. I have already made an appointment with an LLMD...wish me luck!

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 8/9/2016 10:24 AM (GMT -6)   
Doug, do not rely heavily on Quest. But you were fortunate to get a Western Blot out of them. Quest only did the Elisa for me and I failed.

Igenex in Palo Alto, CA is the lab that specializes in lyme and I am sure that your llmd will have you retested there. But... you may be fortunate and find an llmd that relies heavily on symptoms and not tests, that would be the best scenario.
Lyme Moderator

multifacetedme
Veteran Member


Date Joined Jan 2016
Total Posts : 1586
   Posted 8/9/2016 10:51 AM (GMT -6)   
Good luck and welcome to the community. I too only had a positive band 41. This Dr. wrote an excellent blog post on it. http://lymemd.blogspot.com/2008/09/all-i-got-was-41band.html
Echoing others - it is a clinical diagnosis. From what I have read, blood tests are not that reliable. They are used to SUPPORT a clinical diagnosis, not as a diagnostic test in and of itself. Dr.'s look at symptoms, and exposure. If you have symptoms, and you have exposure, then one gets treatment. If one has a herx reaction to treatment, well, you know you are on the right track. If you begin to IMPROVE with treatment (it can be you feel worse before you begin to feel better from herxing - not enough detoxing, doing too much too fast) then you know you are REALLY on the right track.
Felt like I was dying in Dec-15, got guidance here, began questing Jan 16 changing diet, lifestyle, Buhner protocol, Zhang protocol. Elisa/Western Blot through one lab negative. IGEN-X IGM ++ band 41, ind band 31 IGg, ind band 41. Herx: cats claw, bactrim, colloidal silver, allicin. responding to treatment. symptom reduction 60%

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 8/9/2016 10:52 AM (GMT -6)   
Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

DougFresh
New Member


Date Joined Aug 2016
Total Posts : 18
   Posted 8/9/2016 11:12 AM (GMT -6)   
Traveler said...

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.
The testing doesn't mean you don't have Lyme, it only means you aren't producing enough antibodies to get a positive test. While you may not have Lyme, your symptoms are certainly lining up to point to it.


But since I had only IGG 41 in June 2015 and then again in July 2016, shouldn't enough Lyme antibodies have been produced in 13 months for a more positive detection?

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 8/9/2016 11:23 AM (GMT -6)   
The Lyme bacteria inhibits (lowers) the immune function. The longer the bacteria is in the body, the more time it has to control it really well. I was infected for 37 years - you would think I would have had antibodies coming out of my ears, but I couldn't test positive until I had a full 12 months of abx - then I was fully CDC positive for Lyme and RMSF - but not Bartonella, Babesia, Ehrlichia, Anaplasmosis, Brucella and others that I had because my immune function hadn't recovered well enough to build enough antibodies from each of those infections.

Do you need a positive test for insurance or something like that? Does the LLMD require one? If the answer is no to both of these, then I wouldn't worry about testing, as the testing is so poor still. The Western Blot can miss up to 50% of those that actually have the infection, and the ELISA can miss up to 70% of those that actually have the infection. Even the CDC states that it's a diagnosis made clinically - by symptoms - with testing to hopefully back it up. That's about the only thing they get right though!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

DougFresh
New Member


Date Joined Aug 2016
Total Posts : 18
   Posted 8/9/2016 11:28 AM (GMT -6)   
Any guesses as to why my ELISA score went up from .53 to .62 in a few months?

March 2016: EIA W/RFL WB, .53
July 2016: EIA W/RFL WB, .62

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 8/9/2016 11:33 AM (GMT -6)   
You're immune system is trying to fight this off, but not producing enough antibodies to get a fully positive test.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

trader758
Veteran Member


Date Joined Aug 2014
Total Posts : 747
   Posted 8/9/2016 11:33 AM (GMT -6)   
Just to add my 2 cents, which arent worth much...I too had band 41+ and 41 IND. The more I read the more it seemed to me that 41 is pretty specific to Lyme. Through a process of elimination, you can cut out the other possibilities quite easily. At least, in my opinion. Then again, maybe 41 is a total mystery. IGeneX seems to think its specific to Lyme. Do we believe them? Could it be a not yet discovered bacteria causing 41? I dont know.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 8/9/2016 11:47 AM (GMT -6)   
Only time will tell. Right now all we know is that it's the tail end of the spirochete - and there are several spirochetal infections which could create a positive on band 41.

I don't think answers to that question will come along soon though. Not until the powers that be start taking this as serious of a threat that it really is.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Denikeef
Veteran Member


Date Joined Aug 2015
Total Posts : 1092
   Posted 8/9/2016 3:12 PM (GMT -6)   
According to my Igenix test, 41 is specific to Lyme. I apologize if that is wrong...It wasn't my intention to mislead you. I hope you find the answers! =)
Lyme Moderator

Tested Igenix positive for Lyme March 2016.
Lyme symptoms for possibly 40+ years but severe in the last 5 after traumas to the system.
Currently treating with Buhner's Protocol for Lyme and Bart while waiting for a LLMD visit.

Krimpet 🍔
Veteran Member


Date Joined Apr 2016
Total Posts : 3275
   Posted 8/9/2016 6:57 PM (GMT -6)   
This is something that I want to ask this new doctor about that I'm seeing next week about. I'm not changing doctors but this one has some services I'm interested in. I know quite a number of people test positive only for band 41 and do have Lyme. Never a dull moment 😪.

I would highly recommend at minimum you begin working on bringing down your EBV numbers. That can definitely impede progress to getting well.

DougFresh
New Member


Date Joined Aug 2016
Total Posts : 18
   Posted 8/24/2016 10:16 AM (GMT -6)   
Hi guys, I got my IGeneX results yesterday. cry

IGeneX IGM Result: Negative
CDC/NYS Results: Negative


18 kDa: +
23-25 kDa: -
28 kDa: -
30 kDa: -
31 kDa: -
34 kDa: -
39 kDa: IND
41 kDa: +
45 kDa: -
58 kDa: -
66 kDa: +
83-93 kDa: -

IGeneX IGG Result Negative
CDC/NYS Result Negative


18 kDa: -
23-25 kDa: -
28 kDa: -
30 kDa: -
31 kDa: -
34 kDa: -
39 kDa: -
41 kDa: +
45 kDa: -
58 kDa: -
66 kDa: -
83-93 kDa: -

Bartonella henselae IgG: Negative
Bartonella quintana IgG: Negative
Bartonella henselae IgM: Negative
Bartonella quintana IgM: Negative
Hepatitis C IgG: Negative
Babesia microti IgG: Negative
Babesia microti IgM: Negative
Ehrlichia chaffeensis IgG: Positive
Ehrlichia cahheensis IgM: Negative

My LLMD prescribed 150 mG of Rifampin twice daily along with a probiotic supplement.

As you can imagine, I'm feeling disappointed and a little scared. I would appreciate any feedback, advice, words of wisdom. Thanks guys.

Lymey1500
New Member


Date Joined Jan 2018
Total Posts : 2
   Posted 1/11/2018 4:58 PM (GMT -6)   
Hi, I am new here. Can someone please help me understand my lab results. Do I have Lyme disease? I was recently diagnosed with fibromyalgia and chronic fatigue syndrome.

Lyme ab (igg), blot negative

23 kd (igg) band nonreactive

30 kd (igg) band non-reactive

41 kd (igg) band reactive

58 kd (igg) band non-reactive

93 kd (igg) band reactive

23 kd (igm) band nonreactive

41 kd (igm) band non-reactive

18 kd (igg) band non-reactive

28 kd (igg) band non-reactive

39 kd (igg) band non-reactive

45 kd (igg) band non-reactive

66 kd (igg) band non-reactive

Lyme disease AB (igm), blot negative

39 kd (igm) band non-reactive

But where is 22,24,25 bands???

Please help, I need answers
Thank you kindly

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 1/11/2018 6:11 PM (GMT -6)   
Hi Lymey 1500 - welcome!

Fibromyalgia and CFS are common misdiagnoses for lyme disease.

You had bands 41 and 93 reactive. 93 is lyme 'specific' and 41 is the flagella (tail) of spirochetes. It can also be dental spirochetes, Pintas and yaws, syphillis...and a few others.

But, many, if not most of us who test positive for lyme do have the band 41 present.

You asked about 22,24,25 bands. I don't know about 22 and 24.
But 25 is paired up with band 23 on the Igenex testing. (one of the better lyme testing labs)

What lab was that test done at?

If I were you, I'd find a LLMD and schedule an appointment for an evaluation and treatment.
Bring your test results with you

We can help you find one: Start a new thread: "Looking for LLMD in/near____" and fill in the blank.
Then enable your email through "My Profile" so members can send you names privately. We do not post the names of the LLMD"s on here - for privacy reasons.

You can also contact me - send me an email and I'll see what I have listed and send you options if I have some.

And you can contact ILADS for LLMD names:


ilads.org/ilads_media/physician-referral/

We do encourage our new members to take a look through the information in the thread: "New to Lyme?..Start Here!" It's packed full of useful information
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

Lymey1500
New Member


Date Joined Jan 2018
Total Posts : 2
   Posted 1/11/2018 8:26 PM (GMT -6)   
Thank you girlie. I emailed ilads. If I don't hear anything I will reach out. Thank you so much. You have been very helpful smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 1/11/2018 9:51 PM (GMT -6)   
Lymey1500 said...
Thank you girlie. I emailed ilads. If I don't hear anything I will reach out. Thank you so much. You have been very helpful smile


Something you can do - when you get names from ILADS. Whichever one you think you want to see, you can post on the forum: "Anyone see LLMD MR in ______ - putting in the initials of the Dr. only plus the city and state.

Then you can get some feedback from the members here.
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
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