WB Bands 41 and 66

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

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?

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.

What are all of the possible reasons for band 41 being positive?

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.

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

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

First off maybe 41 was specific to lyme not now the cdc changed it all a few times. I can not find the times or changes only the last one, but I do know they have changed it more than once. No matter what band it is it checks the dna for borrelia so it means borrelia we just do not know what ones.

I don't believe Girlie was implying that if you have band 41 you don't have Lyme she is just saying it is not specific to Lyme. So there are many bacteria that would allow a 41 band to show up including Lyme. So if you are positive for band 41 you could have Lyme but you could also have something else. That is why she listed the Lyme specific bands, if you are positive or IND for the Lyme specific bands then a doctor would have a higher confidence you have it and then offer treatment hopefully (length of treatment is very important depending how long you have been infected). Lyme65 I hope you and your family find a llmd in your area asap to get clinical diagnosis and proper treatment asap. You could be dealing with more than just Lyme and if the short treatment you, your husband received was Lyme specific in might mean other coinfectiions have remained without proper treatment to do cause continued symptoms. It is so important to find Lyme literate doctor (which includes knowing about coinfections) especially if you have been fighting for years. Have you checked ILADs.org to see what Lyme Dr's are located nearest to you?


Fyi, just did DNA Connexions with deep tissue massage and all the could report was Ehrlichia Caffreensis NSP.....disappointing. Either these bugs have uncanny ability to evade nearly every lab I have done over the years or I have something that just is not on any lab. I'm kinda not looking forward to llmd call this week....hard for me to justify going back on treatment just for 1 NSP out of 14 possible. .

lymesick65 said...
Hi Roxie60,

We have found a LLMD and treatment will start this week. We have had to go out of state as Vermont is backwards in it's ideas about what constitutes a Lyme diagnosis...the same inept ideas I had to fight in the 1990's. Luckily I found a good LLMD where we lived then, and was treated for 12 years for LD, Ehrlichiosis, Babesiosis and Bartonella. I am hoping that my husband shows improvement in his condition.
Good luck with your quest for treatment.

Wow 12 years! Sounds like it worked for you - you’ve remained symptom free since then?