Positive Lyme, only 66 reactive on blot

Hi all! I am so confused and sad. I thought I had answers for my years of agony as did my internist but I saw an infectious disease Dr and he very rudely told me I most certainly don't have Lyme and I should try taking an anti inflammatory.... because I never thought of that..

Anyways - my Lyme AB is 1.26 but the only reactive band I had was 66. Do I need to start looking somewhere else for my answers. Is this unequivocally not Lyme disease?

oh, and LLMD = Lyme Literate Medical Dr.

They are trained in diagnosing and treating lyme disease.

I'm not surprised your ID Dr. said that you don't have lyme.

We can help you find a LLMD.

Just start a new thread titled: "Looking for LLMD in/near______" and fill in the blank.

You can also contact me and I will check my list of LLMD's...and see if I have options in your area.

just click on the envelope below my screen name on the left..and state in the email where you are searching.

All Drs. are instructed to put more weight into clinical symptoms than tests, which can be very sketchy due to the difficulty of getting an antibody reaction when the Lyme bacteria disguises itself AND weakens the immune function so that the cells that are normally there to alert the antibody cells, don't. But for some reason most regular doctors have been ignoring that, and not even beginning treatment while waiting for labs to come back, which they're traditionally supposed to do.

I hear your exasperation at the anti inflammatory suggestion. I think we all take everything we can't get our hands on for pain relief before running to the Dr.

You can try a different lab test, done by Igenex labs out of California. You order the test by mail, but you need the lab order signed by a Dr.....and any doctor will do.


LOL, I had a feeling I was being beat to the punch, so, I just want to say welcome, and feel free to share your back story a little with us, on your infection(s).

Post Edited (julymorning) : 2/2/2017 3:29:17 PM (GMT-7)

Thanks all! I'll definitely go checkout the information for new members.

I have had bizarre symptoms for years that go temporarily answered only to return. I had flu like symptoms a lot back in 2011 and was told it was likely fibromyalgia. I hated the medication I was on and my Dr stopped taking my insurance so I found a new internist. She ran blood and said my Vitamin D was really low. We treated that and it got better. My Vitamin D holds high but sometimes I feel like I have the flu or run a very low grade fever (99).

Additionally, I have diagnosed with arthritis and bursitis in my left hip. Had an MRI later and do not have arthritis, treated for bursitis and told that I will just need to deal with it. I always just hurt.

This fall my general pain seemed to get better and then I got uveitis - which is a total nightmare if you have never had it. I lost clear vision for about a week, constant pain and it cycled away after a while. Left side only. Came back in cycles every 3 weeks until it cleared at the end of December. about 2 weeks later I woke up with extreme pain in my left shoulder, unable to move it. I figured I slept wrong and it was a Saturday so I just dealt with it. It got better as far as movement goes but there is still pain. It began radiating to my elbow and into my thumb on that same arm. My hip began hurting again and now my knee and ankle are hurting. It sounds so crazy as I type it out. And I feel crazy!

Lastly, and maybe not at all related, if I drink I get really hot and red. One glass of wine and I get hot and red and people ask me if I'm ok. Maybe not related at all.

Thanks for listening! I'll go look at the resources now.

Thanks! I have had ticks on me but I have never had a rash nor do I remember an attached tick. These are the ranges for the Lyme AB test. Luckily I pay for a concierge internist so she's super receptive to my crazy.

Reference Range(s)
≤0.90 Negative
0.91-1.09 Equivocal
≥1.10 Positive

If you are old enough, you might remember when IDS' didn't recognize AIDS/HIV, either. It took rubbing their noses in what they wanted to ignore to wake them up. Lyme & co is a larger exposure than AIDS/HIV, it just isn't as fatal as quickly. Apparently the specialists can't conceive of a bacterium that can be more clever than an md, even though they have had millions of years to develop their abilities to avoid and evade immune systems. Relying on a test that depends on an immune system reaction to a bug that has evolved to avoid such detection is the height of hubris. You need an LLMD. And too many of those who claim to understand, don't.