WB Bands 41 and 66

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lymesick65
New Member


Date Joined May 2018
Total Posts : 2
   Posted 5/17/2018 10:10 AM (GMT -6)   
Hi, my husband had been bitten over 100 times by deer ticks when we lived on Long Island and was treated minimally 2 times. We now live in VT where he was bitten once with minimal treatment. He is losing his ability to walk and the use of his left hand. Neurological tests show nerve damage by an unknown cause, therefore no treatment. He tested positive for WB bands 41 and 66. I myself have chronic Lyme, as does my daughter, and our dog died from complications if Lyme. Of course I believe he has Lyme, but can't find a doctor to treat him. We live in Vt, but would travel to NH. Any help finding an llmd would be most appreciated. Thank You

lymedocumentary
New Member


Date Joined May 2018
Total Posts : 2
   Posted 5/17/2018 12:36 PM (GMT -6)   
Hi Lymesick65, I remember watching this video on band 41. Basically, band 41 being positive means you have lyme disease. (youtube.com/watch?v=kyLvy5Qsm5U)

It is a very specific band. If you are looking for a helpful test, you might try Igenex (igenex.com) since they include band 31 and 34 on their version of Western Blot, and if your husband tests positive for these bands they should treat him for lyme. I wish you well.

@LymeDocumentary

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 5/17/2018 5:38 PM (GMT -6)   
Hi lymesick55, welcome!

Bands 41 and 66 are not lyme specific bands.

But, lyme should be a clinical diagnosis, with testing used as a back up.

The exposure to numerous tick bites (over 100) in an endemic area...and now severe symptoms is sufficient for your husband to be treated for lyme disease.

I suggest you find a LLMD for your husband and schedule an appointment.

To find one, you can start a new thread: "Looking for LLMD in Vermont or NH"

You can also email me for some options...although you may need to travel a bit - not many good options in Long Island, if I'm remembering correctly.

You can also contact ILADS for Dr. suggestions:



ilads.org/ilads_media/physician-referral/


By the way - are you and your daughter not getting treatment for your chronic lyme?
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 5/17/2018 5:39 PM (GMT -6)   
lymedocumentary said...
Hi Lymesick65, I remember watching this video on band 41. Basically, band 41 being positive means you have lyme disease. (youtube.com/watch?v=kyLvy5Qsm5U)

It is a very specific band. If you are looking for a helpful test, you might try Igenex (igenex.com) since they include band 31 and 34 on their version of Western Blot, and if your husband tests positive for these bands they should treat him for lyme. I wish you well.

@LymeDocumentary


Hi lymedocumentary, welcome.

Band 41 isn't specific to lyme. It represents the flagella of a spirochete. There are a few other infections that trigger that band as well.
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

lymedocumentary
New Member


Date Joined May 2018
Total Posts : 2
   Posted 5/18/2018 11:36 AM (GMT -6)   
Hi Girlie, I do feel welcomed, thank you very much!

I agree with everything you said. I was trying to help lymesick55 see that lyme is very likely in her husband's case, given all she said. If band 41 is positive, it is pretty easy to tell if it could be something else like syphillis. Given what she said it seems like those can be ruled out, hence lyme. Checking bands 31 and 34 would be her best step, because if those aren't positive it is still probably lyme but unfortunately it would be much harder to get that diagnosis.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 5/18/2018 3:47 PM (GMT -6)   
lymedocumentary said...
Hi Girlie, I do feel welcomed, thank you very much!

I agree with everything you said. I was trying to help lymesick55 see that lyme is very likely in her husband's case, given all she said. If band 41 is positive, it is pretty easy to tell if it could be something else like syphillis. Given what she said it seems like those can be ruled out, hence lyme. Checking bands 31 and 34 would be her best step, because if those aren't positive it is still probably lyme but unfortunately it would be much harder to get that diagnosis.


31 , 34, 39, 23-25, 83-93

All Lyme specific (we’ll 31 - not quite but there’s an epitope test that can be done - but not usually necessary
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

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 5/18/2018 6:49 PM (GMT -6)   
What are all of the possible reasons for band 41 being positive?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 5/18/2018 7:02 PM (GMT -6)   
magoo2 said...
What are all of the possible reasons for band 41 being positive?


I don't know all the possibilities...but this is what I've read/seen:

Band 41 is specific for the flagella (tail) of spirochetes (corkscrew bacteria), but is not absolutely specific for Borrelia.

Syphilis, dental, Pintas and Yaws, Relapsing Fever....
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

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 5/18/2018 8:32 PM (GMT -6)   
So there is clearly more than lyme and syphilis.
Could be:
Dental
Pintas and Yaws
Relapsing fever

How does one eliminate them? FYI obviously dental would be getting checked by a biologcal dds but I have no clue on what to do for the other two.

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 88
   Posted 5/18/2018 8:42 PM (GMT -6)   
I disagree I see the chart but I tested for these two bands too and I had the bullseye rash after removing a lone star tic. Maybe a different strain of B.B. causes the flagella band who knows the test is not very good at all and if your immune is suppressed you could have all the bands and never show up right? Symptoms is your best bet for diagnosing. And the knowledge here is the best to figure out what and how to treat

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 5/18/2018 10:03 PM (GMT -6)   
magoo2 said...
So there is clearly more than lyme and syphilis.
Could be:
Dental
Pintas and Yaws
Relapsing fever

How does one eliminate them? FYI obviously dental would be getting checked by a biologcal dds but I have no clue on what to do for the other two.


Pintas and Yaws are rare - I think they’re tropical diseases.
The symptoms are dermatological - so if you have more than skin lesions - I’m thinking they could be ruled out.
I think there may be a blood test for them too.

Igenex has a test for Tickborne Relapsing fever now - not sure how accurate it is. Perhaps the treatment is the same as Lyme
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) : 5/18/2018 10:06:35 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 5/18/2018 10:09 PM (GMT -6)   
Donjr said...
I disagree I see the chart but I tested for these two bands too and I had the bullseye rash after removing a lone star tic. Maybe a different strain of B.B. causes the flagella band who knows the test is not very good at all and if your immune is suppressed you could have all the bands and never show up right? Symptoms is your best bet for diagnosing. And the knowledge here is the best to figure out what and how to treat


What do you disagree with?
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

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 387
   Posted 5/19/2018 9:42 AM (GMT -6)   
My LLMD brushed off the results i had which showed band 41 only.

"Everyone has band 41" He said

Here's an interesting bit he told me. He said that bartonella can light up band 39 for lyme. I'd never heard that before but I'm inclined to believe him. This is Dr M, the bart guy

Lymesick65- i believe you have more than sufficient evidence to pursue lyme deeper. There's a Shoemaker certified CIRS doctor in VT. I'm assuming they are pretty well versed in lyme but i don't know how they compare to ILADS folks. If you're willing to travel, there are a few in CT and RI
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