Should I keep treating for Lyme?

I posted here a few times several months ago (and fyi, read all the New to Lyme? stuff) and wanted to follow up since I've finally seen the LLMD.

Background:

I was a healthy and active person but after a tick bite (no rash) in 2011 I started having scattered, random symptoms; chest pain, tingling extremities, chronic headache, migrating arthritis-like pain. In 2014 I became very ill with additional symptoms of weakness in limbs, numb areas on upper body, tremor, random, all-over muscle twitching, constant tinnitus, dizziness, a constant internal buzzing feeling, gastrointestinal issues from top to bottom, heart palpitations and anxiety attacks (with nothing but my health to cause them)....Most of these symptoms have not gone away although I have stretches where they are not as bad and I am fairly functional.

I've seen around twenty doctors/specialists, had tons of tests, even had a full workup at Mayo Clinic but nothing was found. I tested negative for Lyme on a Quest WB with only band 41 reactive. Finally a rheumatologist diagnosed me with fibromyalgia with high mycoplasma and EBV titers, which is when I found the Buhner protocol for mycoplasma. It led me to notice how much my symptoms look like Lyme disease. I scored 78 on the Horowitz questionnaire so I made an appointment with an LLMD and added the Buhner Lyme herbs to the mycoplasma protocol. This was several months ago. I herxed like crazy on it but finally got to a level I could tolerate and even started to feel some improvement.

I finally saw the "LLMD" and had an IGeneX test. The IFA was equivocal but the WB was CDC and IGeneX negative with only bands 41, 45 and 58 reactive. The LLMD says he is "hesitant" to diagnose me with Lyme because of this and the fact that my CD57 is at 100, a number he says his Lyme patients would kill to have.

The LLMD took blood for a bartonella test since the soles of my feet always hurt and I've been exposed to many cats. Apparently I also have high titers for chlamydia pneumoniae so he gave me some herbs for that. He is also running a C6 peptide test. I imagine if that returns negative I'll basically be stuck with that mystery disease label, fibromyalgia.

My questions are:

Has anyone here had similar symptoms and test results but still been diagnosed with Lyme?

Is 100 a normal CD57 level? I know many Lyme patients have extremely low levels (like 12!) but I read that a totally healthy person is usually around 200.

Could Bartonella, chlamydia and mycoplasma alone cause the kinds of symptoms I have? (Tremors? Heart palpitations?)

If you were in my shoes would you continue the full Lyme herbal protocol or just treat for non-Lyme MSIDS?

I can't afford to keep going to the LLMD. They want to run every test under the sun and also I don't feel like they take my symptoms seriously. For example, they looked at my hands for about a fraction of a second before saying they saw no tremor. All of my friends and family say they absolutely see it. Sometimes I can't even put on my makeup because of it.

I'm just confused and not sure where to turn or what to do at this point. Any input or advice would be very much appreciated.

I would encourage you to stick with what's working. The herbs not only made you herx, but are helping you feel better, so why would you stop them????

As for your test results, while none are Lyme specific (meaning nothing else will show a positive on those bands), you did have band 41, which indicates the tail of a spirochete and there are only so many of those types of infections - ​​​ ​​such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Band 45 appears for Ehrlichia infections.

Band 58 is possibly from Borrelia afzelii - another strain of Lyme disease that the Western Blot and ELISA don't pick up.

Many here are navigating Buhner's herbal protocols on their own, and can be a big help to you!

Sida acuta and Scutellaria baicalensis is supposed to help with tremors, per Buhner.


It might have helped with my electric current/buzzing feeling too.

always check herbs for side effects and contradictions and start slow with them to see if you have a reaction or not.

Take care,Jo

Thanks, goshawk. Sida acuta has been in my protocol from the beginning. But just the other day I realized I wasn't taking near the full dose of Skutellaria that Buhner recommends. I needed to double the amount. It hasn't been long enough to notice anything yet but I'm hopeful that tweak will help. Also, I'm sorry you had the weird buzzing thing too but glad to know I'm not alone with this bizarre symptom. I sure hope your buzzing has gone away.

PeteZa, yes, I did read that at the Igenex site so with my symptoms and history of a tick bite I guess I was expecting a diagnosis but I guess until I have a positive test my doc is going to treat me very conservatively and probably only with herbs. Then again, I prefer to go the herbal route anyway so I think I'll just stick with what I'm doing and work in the herbs they gave me for the mycoplasma, chlamydia and possible Bartonella. It's good to know I can always come here for advice. Thanks!

I'm pretty sure you have Lyme based on the way you described how it happened. I bet the other stuff is just now multiplying because Lyme has created the playground for which they can flourish.

I have had mostly neurolyme, with tremors, numb extremities, tingling, etc. I also was treated for Bart, Babesia, and a host of other bacteria and molds.

My LLMD is very good. Like yours, he did all the tests in the beginning, etc. My CD57 level was 100. I was very sick. He told me he thought that since my CD57 was pretty good, it meant that I still had a good immune response but that can also be bad because if its too strong, that's not good either, creates auto-immune stuff, etc.

My doctor gave me the antibiotics and I did the Buhner herbs when I went off the antibiotics. 1 drop of Cat's claw used to make me herx horribly. Now, I'm up to 2 droppers (hoping to join the Healed soon...)

If you can't afford the LLMD, I would do the herbs. The Buhner protocols worked well for me. Although, the only thing was that when I took the L-Argine at high doses, my mycoplasma got worse.

It's definitely a wack-a-mole situation for a long time...I would steel myself for the long haul.I'm coming up on two years in October. 95% healed! You can do it!

Traveler, I'm sorry your tremors were so bad. Mine are just mild so not noticeable to anyone else unless theyre watching for them. But you have to observe for more than an eighth of a second most of the time. (Which my doctor didn't.) They do increase in intensity and become noticeable when I am very tired or feeling especially bad and they also seem to go hand in hand with the internal vibration or buzzing (and the tinnitus). The buzzing vibration is the symptom I didn't know if many others had. When I asked, no one at the fibromyalgia board said they had this symptom. I was starting to think I was nuts and searched the Internet in vain until I finally found many Lyme sufferers who have this. Does anyone know what causes it or is it just another neuro thing?

It's pretty much "just a neuro thing" with these infections. Our nervous systems can be very overloaded with bacterial and viral infections as well as toxins and once we can get the numbers of all of those things down, then our nervous systems will generally calm back down.

Do be sure that you are following a really good detox routine daily to help with removing the toxins though.

I grew up with many of my symptoms, but it got really bad about 12 years ago, which is when I started trying to find out just exactly what was wrong with me....again. In some respects, it's been easier on me than on those that have 'suddenly' gotten sick, as these symptoms were normal to me, not at all scary, until I started getting into the more serious symptoms of course, like seizures. Those scared the pants off of me.

The other little silver lining I hold close is that because of the things I've been through and experienced, it's given me a good background for helping others that find themselves infected - and a desire to help them. No doubt just how tough it is to get through this!!

Keep asking questions, and keep looking for your answers. They are out there!!

Thank you for your kind words, Manzanita! We are all working towards the same goal here, so it's easy to help out by sharing a bit!

Hi TickedOffInCanada - welcome to our community!

Are you currently in treatment for lyme disease - or are you looking for help finding a Lyme Literate Dr.?

The bullseye rash is diagnostic for Lyme disease. It is a sign/symptom of lyme disease.
But, the good news is you caught it early. And, yes you should be on antibiotics.

If you do get new symptoms developing in that time frame - you need to continue treating - do not stop if you have symptoms..the antibiotics need to be extended.

This is your best chance to not have it become a chronic infection.
Believe me you don't want that to happen.

I am Canadian, too.

We do encourage our new members to take a look through the information in the thread: "New to Lyme?..Start Here!"

No, it's fine to leave your posts here. No worries!

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