Hello all long time no see!
I'll post a brief summary of what's been going on so far.

I haven't posted on this forum for quite a while because I had a negative ELISA test and then was later diagnosed with ankylosing spondylitis after still treating for Lyme despite the negative ELISA (I only did a month of doxycycline 100mg 2/day, followed by core Buhner protocol for 2 months. My AS diagnosis came about 1 month after starting Buhner and I continued Buhner for an additional month after before stopping entirely and focusing my efforts on the AS diagnosis/ searching for other answers. My initial symptoms started December 2016 a month after a trip back home to PA (I live in Taiwan) and my main complaint was/ continues to be problems with my balance. I had never noticed a tick-bite during my trip home, but come from an area with lots of ticks and saw some while I was home on pets. about April 2017 I developed back and joint pain. I was diagnosed with AS in September 2017. I should point out that there are also no LLMDs in Taiwan that I have been able to find.

Anyway long story short I've been seeing doctors for my AS and also neurologists and other specialists trying to sort my balance issue as my imbalance is considered not a part of AS and it's my worst symptom. Around November 2017 I pretty much convinced myself I did not have Lyme disease. Anyway no specialists have been able to diagnose my balance issues as of yet. I just visited home again for 3 weeks and my mom had brought up the possibility of having another test for Lyme disease while I was there. I was not sure whether I wanted to spend the money on it or not because I don't have insurance in the US anymore, but after seeing numerous ticks in my short span back home on family pets I decided to go ahead and order a test from walkinlabs 3/2 (just a day before my flight). The test was done by quest diagnostics which I know from browsing here isn't really very reliable, but I decided last minute to have the test done and there was a Quest on the way to the airport. I decided to order the western blot because I had already had a negative ELISA. Here are the results:

"LYME DISEASE ANTIBODIES QHO
(IGG,IGM), IMMUNOBLOT
LYME DISEASE AB(IGG),BLOT NEGATIVE NEGATIVE
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON-REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
LYME DISEASE AB(IGM),BLOT NEGATIVE NEGATIVE
23 KD (IGM) BAND NON-REACTIVE
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE
As per CDC criteria, a Lyme disease IgG Immunoblot must
show reactivity to at least 5 of 10 specific borrelial
proteins to be considered positive; similarly, a
positive Lyme disease IgM immunoblot requires
reactivity to 2 of 3 specific borrelial proteins.
Although considered negative, IgG reactivity to fewer
specific borrelial proteins or IgM reactivity to only
1 protein may indicate recent B. burgdorferi infection
and warrant testing of a later sample. A positive IgM
but negative IgG result obtained more than a month
after onset of symptoms likely represents a falsepositive
IgM result rather than acute Lyme disease.
In rare instances, Lyme disease immunoblot reactivity
may represent antibodies induced by exposure to other
spirochetes."

So CDC negative, but what do you all think of the 1 reactive IgG band 41 KD?

Sorry for the long post!

My pain has remained more or less the same. The balance issue has never stopped. The only new symptom I've developed recently is pressure in my left eye, but no abnormal findings on eye exams, occasional heart palpitations but normal EKG, ultrasound, etc. I also found out that I have a mild fatty liver after all the testing. I've done a little digging on band 41 and it looks like a positive on it means there is some type of infection?? I've already tested negative for syphilis twice since symptoms started.

Hi Girlie,

Thanks that seems to match what I've been reading. I think I can safely rule out syphilis(with the 2 negative tests), Yaws, Pintas, and Relapsing-Fever... my symptoms don't seem to match these. I don't know about dental spirochetes though.

Unfortunately, I am unable to have an Igenex test unless I return to the states again, I don't think I'd be able to find a doc to agree to do a draw for this here. Taiwan follows the US CDC guidelines for lyme I'm pretty sure so most doctors will say no to Lyme based on the ELISA.

It seems unlikely that I could have any other Lyme testing here, there is a center that I could pay out of pocket at a research hospital in the south for different types of testing, but I don't have any idea about the accuracy of that one. I don't know if I'm correct to be leaning heavily toward lyme again based on this WB test or not, but I think my only option would be to to try this online consultation site http://www.treatlyme.net/one-to-one-medical-consult/ (don't know how reliable it is) to see a Lyme doctor in the US and then buy any recommended treatments over the counter if he were to think Lyme.

I still believe the AS diagnosis to be accurate as I've had multiple doctors agree that I do have that, but they also agree that it isn't causing my balance problems.

So, one of the great things about Taiwan is that there is universal healthcare here. But, in this situation that would likely keep me from finding a doctor that would follow his recommendations. Apparently doctors here have a lot of pressure from the government(I found this out a few months ago when a doctor said that he thought it would be wise to have a full spine MRI, but that he wouldn't order it because he was afraid he would get in trouble if nothing showed up, I ended up paying out of pocket for one), so if I were to go to the doctor asking for treatment for something the government already says I don't have... well I doubt it would happen. Basically if I were to do that consult I would take his treatment guidelines and self-treat, there is a pharmacy here that I can buy antibiotics from without a prescription, I just don't want to do that with no medical advice at all. I had one telemedicine visit with a doctor last year who was the only doctor who suggested Lyme disease to me all this time, but I do not think he is a LLMD.

Thanks that is also an idea! I am going to send an e-mail out to inquire about the online consult and get a price. I guess I will then go from there. I just don't know what else this could be at this point. I also did forget to mention I had one additional symptom. I've been having jaw pain for over a month now. I thought it was TMJ from the AS (apparently that can happen), but I went to a dentist who did not think so (he thought I had a pulled muscle).

I am curious how you would describe your balance issues? Also, did they figure out the cause for your spondylitis? It is an autoimmune disorder but unsure as to the cause. Some have suspected Lyme as a contributing factor.

I personally did a DNA Connexions test as it is a urine test that can be ordered online. It is a research lab and for $500 dollars they run 4 different matches for Lyme proteins, 3 other strains of Borrelia, 3 strains of Babesia, 3 strains of Bartonella, Ehrlichia, and Anaplasmosis.

I had success with using this lab and getting results and since it is a PCR test if it is positive then it is for sure but like any tickborne test, a negative means little. It appears to have good yield when patients do a 1-hour deep tissue massage directly before taking a sample to coax out bacteria.

I would be curious though about the balance issues. Mine seem to have come under control for the first time in 2 and 1/2 years

Nick

One more question for you guys, I know you aren't doctors but I'd like opinions since my options here for treatment are rather limited.

I got doxycycline from the pharmacy a few days ago and have been taking 100mg twice a day(I feel more comfortable sticking with doxy for now since I know how my body reacts to it) After some research it seems like that's maybe not enough. Is 200mg twice a day usually well tolerated ? I just don't want to do more harm than good. I already took 1 200mg dose but thought it best to get opinions here before I continue that way.

I will be ordering buhner herbs and some things like milk thistle to help my liver (an ultrasound a few months ago showed mild fatty liver)

Thanks !

c009j said...
One more question for you guys, I know you aren't doctors but I'd like opinions since my options here for treatment are rather limited.

I got doxycycline from the pharmacy a few days ago and have been taking 100mg twice a day(I feel more comfortable sticking with doxy for now since I know how my body reacts to it) After some research it seems like that's maybe not enough. Is 200mg twice a day usually well tolerated ? I just don't want to do more harm than good. I already took 1 200mg dose but thought it best to get opinions here before I continue that way.

I will be ordering buhner herbs and some things like milk thistle to help my liver (an ultrasound a few months ago showed mild fatty liver)

Thanks !

200 mg twice daily is the recommended dose for lyme treatment. (for doxy)

But, you don't want to continue to take just doxy on it's own. you want to pair it with another antibiotic.