Lyme, or not Lyme, that is the question...

Wow, what an amazing resource for Lyme disease. I am so excited that I came across this forum and joined. My question is - do I have Lyme disease or is it something else? Thirteen years ago I had the tick, had the positive diagnosis and was treated for a month with antibiotics. The doctor said I was cured. I grew up horseback riding in CT and NY so it might not have been my first bout with Lyme. Anyhow, I've had a decade of "unusual" health issues and recently moved from CO to OR. Shortly after arriving to OR I started experiencing joint pain in my hands which then turned into Carpal Tunnel. One thing led to another and here I am a year and a half later with severe inflammation ALL over my body, complete exhaustion, swollen gland, muscle pain and weakness, terrible sleep issues, depression, etc... My quality of life has diminished completely. I used to be an athlete (mt. bike, Nordic ski, hike 14ers, run, etc..) and now I'm lucky if I can take the dog for a short walk. I'm currently taking three prescription meds to help with pain/inflammation which only slightly help. Two Rheumatologists diagnosed me with Connective Tissue Disease. I have had three Lyme tests with mixed results. The last test was the IGenX test which results were:

IFA Burgdorferi - 40
IGM - positive bands - 18, 31, 34 (IND), 39, 41, 83-93
IGG - 34 (IND), 39 (IND), 41 (positive), 58 (positive)
Genomic and PLASMID B Burgdorferi - negative

It's not that I don't want to believe I have Lyme - I'd LOVE to have a solid diagnosis. It says right there on the test results that some viral antibodies cross react with the positive IGM bands. After my first test (Ispot) in Nov. 2013 I took antibiotics (along with a host of other supplements, etc..) for fours months. I thought I was dying. Since then I have tried a botanical approach, which didn't help and now I just ordered CBD oil at the advice of E.M (retired Lyme doc).
What do you think? It's so hard for me to commit to a protocol when I have doubts about the condition.
Thank you for reading my story.

Hi Sarah,
Thanks for the reply! Yes, according to my ND, it is CDC positive. I guess I am feeling confused since it says on the test that it could be another type of virus and I've read a bunch about the sensitivity of the testing and how it can pick up other things. It seems that I'm always on the border of being positive/negative. My CD57 was right on the border as well.

^ Yup.

Hey cf123, welcome to the forum! I literally gasped when I saw your results because they are very similar to mine, except mine said negative on both CDC and WB, which is wrong. Without question, looking at your bands, you have Lyme. I wouldn't even spend more energy trying to get another diagnosis, you have lyme specific bands. Like you, I was an athlete, extremely active, weight lifter, soccer and hockey player, runner, etc. for years and years. Now, just like you, I'm lucky if I can walk my dog for 10-20 minutes without wanting to cry and lay down in the street so I don't move. Your best bet for treatment is to find an LLMD in your area, if you don't know one, you can post a new thread asking for an LLMD in your city, state and forum members will help you. Guessing which protocol, whether herbal, antibiotic etc. will work for you withuot the help of an LLMD/LLND will not be beneficial.

Hi Cf,
Welcome to our community!! And I would definitely agree that you have Lyme!! You have tested positive or IND to too many Lyme specific bands to not be! And that's not to mention that you only had 1 month of abx the first time around!! You should have had a minimum of 8 weeks of abx, and that's if you weren't having any symptoms.

There are several natural protocols that you can have a look at:
Buhner's :buhnerhealinglyme.com/the-protocols/

Cowden's: www.nutramedix.ec/ns/lyme-protocol/292-condensed-cowden-support-program-summary

Byron White formulas: byronwhiteformulas.com/

And you can take a look at what I used, which is a modified form of the Chronic Tonic from Misty Meadows. Here is the link to the Misty Meadows site: [ur]http://www.mistymeadows.org/wendydocs/Lyme Disease.pdf (the Chronic Tonic recipe is on page 77).

And the version the Master Herbalist I was seeing had me do:
www.healingwell.com/community/default.aspx?f=30&m=3244272

I likely missed a couple, but those are the main ones used most often.

Welcome aboard!

Well, that's why we say don't rely on tests. The bacteria can actually stop the body from producing the antibodies that the tests use to identify it. It should always be a clinical diagnosis and hopefully have labs that back it up - never the other way around.

Many of us here have pursued treatment even though we have had negative tests, including me - and it's a good thing I did or I would have never healed from what was really affecting me.

So, if you have most of the symptoms of Bartonella, Kayaklove, you almost certainly have Bartonella.