It might be not Lyme...

corwin, I can't remember, so I am sorry for my faulty brain but did you have an Igenex lyme test?

Also, I was given Ceftin and Biaxin initially for my lyme for 1 month and I felt absolutely nothing except for the symptoms I already had and then the antibiotics caused me tummy issues.

I agree with what has been said here - Band 41 only reacts to other spirochetal bacteria - Lyme, syphilis, Pintas, Yaws... Here is a non-biased site showing what are spirochetal infections:www.britannica.com/science/spirochete

Many don't herx until the second, third or even fourth month of good treatment. You said this is your treatment:
Amoxicillin for 6 days + tetraciclyn and levofloxacin after the amoxicillin for another 6 days.

Amoxicillin is not effective for these infections unless it's used along side of Probenecid (another abx) that will keep the Amox in the blood stream longer.

And if your doc didn't know this, they might not even know or be willing to use high enough doses of the other abx, so can you tell us what doses you are taking of each abx?

And I can tell you that Lyme can mimic ALS very well. We've had several members on here that have been diagnosed with ALS and it turned out to be Lyme:
www.als-cure.com/als-lyme/als-patients-infected-with-lyme-bacteria-borrelia-spirochetes/

H. Plylori does have flagella.

Corwin - I would also suggest (if you haven't already) to get tested for additional things like mycoplasma, viruses, etc. I found out I tested positive for mycoplasma pneum yet I don't really have pneum symptoms. Since I've been taking azithromycin with plaquenil (which does hit mycoplasma) I have noticed some improvements.

I never really herxed per say on any antibiotics. Because of this I have always been skeptical of my diagnosis and second guessing everything. The only thing you can do is try something for more than a month to see if anything changes. And if that doesn't work, try a new mix of antibiotics or herbs.

I did get a stiff neck and a really painful elbow about 10 days after I started Japanese Knotweed and Cat's Claw. Who knows if this was a herx? I suspect it was doing something though!

Such a great community! Mostly observing as I sort stuff out, sending positive vibes. All I can add is, trust your intuition/gut, the wisdom of your body as you keep seeking answers. Bits of wisdom that come your way will resonate with you as something relevant to your path as you research. For me at least, it sort of works that way. So good you are so open and doing your own research!

Well, Corwin, just got my middle daughter's Elispot back and she is positive.

Corwin, did you get an Igenex western blot test? You know that is the most accurate test.

I just feel so bad that if you have lyme you are paying for so many other tests.

All that money could go to treatment.

I had a negative regular ole LapCorp test for lyme disease. Positive with Igenex. That was enough for me.

bump

You do realize that prednisone is not a good thing to take while you have an ongoing infection of any type, right? You've herxed from using Lyme herbs and you have high EBV numbers. Neuro Lyme can and does create a LOT of nerve related issues all the time, including inflammation (Lyme is an inflammatory infection), and Lyme attacks the myelin sheath - the protective covering of the nerves.

Definitely test for Mycoplasmas (Pneum, etc). My EBV IGG is >600, so that is somewhat common if you have Lyme. I believe my only symptom with the EBV is fatigue. Are you tired?

Also, I thought of you when my mom called me a few weeks back to tell me that she ran into my Uncle and he is having some issues with his speech (slurring), muscle twitching in face, hearing issues, sleep issues. He told her he was tested for Lyme and it was negative. Long story short, they sent the test to me and it was really not negative but his doc said it was. He had a low positive ELISA and bands 41 & 66 IGG only on Western Blot (Labcorp). I have urged them all to get to a better doctor ASAP. He was also given some antibiotics and steriods by his family doctor. Seems familiar, right? Upon more discussions with his daughter, he was bit by a tick last year deer hunting and did have a bulls eye rash, which he never went to the doctor for. Case closed! Can't believe doctors are overlooking this kind of stuff.

Corwin - I went to a neurologist to have ms and ALS ruled out...because of my nervous system involvement.

I got weak in the legs...and tremors as well. Also, lots of body wide twitching. I had to stop driving for awhile.
My arms got weak, but not as bad as my legs.

The neurologist looked at the mri results..and did a quick physical exam..and some tests...and said I didn't have either.

Atrophy can be from lyme and/or bartonella attacking your nerves. I believe that is what happened in my case.

In the "Under Our Skin" documentary, there is a young girl who has lost the use of her legs...and her parents are carrying her around. In the sequel, she is walking, and is well.

I have seen many YouTube videos of people with lyme, losing loss of muscles...

"Nobody understand you and everybody says - oo you look great, you are not sick..."

I would be interested to see how many people have heard this? I listened to almost every doc when they sat down in front of me say this "you just look to good to be sick" or "if you were really sick you would look sick".

Wow I am glad I am not the only one. And you are right corwin it is extremely nerve racking to be so sick and not know. I am struggling sometimes to because even though I have been clinically diagnosed with lymes, bartonella and erlichia all my tests have been negative so far and it makes me wonder if I am missing something like cancer or als but I take stock in the fact that my doc told me he fully expects after treating me for a month to have a positive result as if you have had lymes for a while it wont show in the immune response so I am praying that he is right and we are not missing something.

Although it sounds like many people here have had simaler stories and came out ok in the end. So take heart.