Potential Lyme Diagnosis?

Hi All,

A Functional Doctor just ran tests and says that I have Bartonella. Looks like im just igg positive for bartonella and the c6 peptide. My story and symptoms have been so across the board. Ive been to the best neuro departments in the country and they dont know the cause. They tested me tor Lyme before with Western Blot and i was negative. I was never tested before for coinfections.

Below is my story and symptoms:

March 2020

- started having heart palpitations

July 2020

- shock like electric current through my body and into right leg, toes would go numb for a while and I would wiggle them to restore function. This kept happening maybe once a week.

October 2020

- Started waking up with left arm and left hand numb and with “needle” like feelings in it.

November 2020

-Right arm and hand started doing the same thing.

December 2020

-Left leg now started having electric current into toes and numbness.
-Loss of sensation in hands and feet. I can still feel things but they just feel different ( hard to explain this one to doctors)

- Tingling started in middle of forehead and top right side of face. This area is sensitive to temperature it seems.

January 2021

- Hands started burning

- Insomnia due to burning pain

- Muscles are constantly twitching, especially in the feet. Ive attached a video for reference, the twitches never stop, and get really bad after any workout.

- Worsening vision

- Fatigue

- Very easily get sore.

- Tachycardia

- Parasthesias

- Stomach constantly making sounds

I have had pretty extensive workup with multiple neuros after the first was unable to make a diagnosis.

- Clean MRI of head and spine

- CT scan of chest and abdomen. Normal.

- Final fluid was checked, no issues.

- 2 normals emg and nerve conduction studies.

- Normal skin biopsy, no small fiber nerve damage apparently.

- Tested for all the standard things, lyme, stds, all bloodwork is normal except mildly elevated billirubin.

- Tested positive for ANA , and then tested negative a month later, which they told me was irrelevant.

This all eventually led to a tilt table test because of the tachycardia, and I was informed that it showed POTS. Im concerned because i do not seem to have the typical symptoms described with POTS. While my conditioning has certainly worsened, I am still able to do many physical activities like riding a bike, walking, but I do get fatigued quickly.

My main symptoms of concern are the electric shocks that I now get through my jbody, the random burning hands, and the nonstop muscle twitches. Does anyone have any similar experiences with this and what has helped them.


Diagnosis: POTS, Benign Fascicultion Syndrome.

https://vimeo.com/548220198/3bdda72bf3

https://imgur.com/a/xHLmTzk

Hi Eddie,

Welcome to the forum.

I suggest you seek out a LLMD (Lyme Literate Medical Doctor) or an LLND (Lyme Literate Naturopathic Doctor) for an evaluation, testing.
It certainly lines up with lyme and co's.

I have/had many of your symptoms. The raised bilirubin could be from bartonella... I also have POTS. My heart rate goes up to over 100 when I stand up...

Those symptoms are pretty bad. You really need to get proper and effective treatment for bartonella. Dr. M is the bartonella guru. He’s in Maryland, I believe. Bartonella can be a tough infection to treat. I would not recommend getting treatment from a regular doctor for this. I would recommend a good LLMD with success treating bartonella.

What were the results of your Lyme Western blot? Any positive bands?

Any idea how you got infected? Cats and fleas are common transmitters of bartonella in addition to ticks.

It may take a while to get an appointment with an LLMD. You could start treating yourself with herbs while you’re waiting. Many people use Stephen Buhner’s herbal protocols. There’s also Byron White, Zhang, Desbios, and others. We can help if you’re interested.

EDIT: I just saw your test results. Lyme bands 39, 41 positive. Band 39 is borrelia specific. You do have Lyme. CDC criteria is bogus. Band 39 is Lyme.

There is nothing “benign” about fasciculations related to these infections. I hate doctors diagnoses.

Post Edited (WalkingbyFaith) : 7/30/2021 9:41:53 PM (GMT-6)

C6 ELISA test is very specific - better than 90% i believe

western blots with several bands and your symptom picture puts lyme right up there

again false positives less of an issue than false negatives with all lyme and co-infections tests

i wrote something about how to weigh the various tests in another thread - will try to find it and add that

WalkingbyFaith said...
Those symptoms are pretty bad. You really need to get proper and effective treatment for bartonella. Dr. M is the bartonella guru. He’s in Maryland, I believe. Bartonella can be a tough infection to treat. I would not recommend getting treatment from a regular doctor for this. I would recommend a good LLMD with success treating bartonella.

What were the results of your Lyme Western blot? Any positive bands?

Any idea how you got infected? Cats and fleas are common transmitters of bartonella in addition to ticks.

It may take a while to get an appointment with an LLMD. You could start treating yourself with herbs while you’re waiting. Many people use Stephen Buhner’s herbal protocols. There’s also Byron White, Zhang, Desbios, and others. We can help if you’re interested.

EDIT: I just saw your test results. Lyme bands 39, 41 positive. Band 39 is borrelia specific. You do have Lyme. CDC criteria is bogus. Band 39 is Lyme.

There is nothing “benign” about fasciculations related to these infections. I hate doctors diagnoses.

I missed the bands 39 and 41
- yup lyme disease

“ So level with me here. What are my chances at recovery? Considering ive probably had Lyme for a year now. I just need the darn twitching and burning to go away. It legit feels like i have an electric shaver strapped to the bottom of my foot. “

Your chances are good - in my opinion - if you’re willing to persevere and not give up too soon.

Many of us have been dealing with/treating for over 2 years.

I had to stop working in 2013 due to the severity and number of symptoms I had. I was disgnosed and started treatment in 2014.
I finally went back to work last year.

I do know of many (here on the forum and outside of the forum) who have reached remission within 2-3 years of treatment.

But I had several symptoms resolve within a year and a half of starting treatment.

Eddie353 said...
Well darn that blows….

I guess the positive is now i know whats wrong with me.

So level with me here. What are my chances at recovery? Considering ive probably had Lyme for a year now. I just need the darn twitching and burning to go away. It legit feels like i have an electric shaver strapped to the bottom of my foot.

I believe the doctor wants me to start on 2 antibiotics, and he said they have some tinctures/natural herbs they have patients use.

Additionally on their website I see they offer HYperbaric oxygen therapy. I think this is very expensive, but i might be able to muster up the funds to do 2 months treatments w hbot.

I know every case is different and circumstances vary.

Im already on a really clean diet, 0 sugar, 0 grains, 0 dairy. 0 cheat days.

If i maintain the diet, do the antibiotics, herbs, hbot, vitamin infusions. Whats my timeline looking like for recovery or atleast ease in symptoms?

Btw yall are awesome and really great information already!

I have/had several of your symptoms and I have Bartonella and Lyme -- turns out I've had the bacteria in my body for 40 years. Healing is possible and recovery/remission is definitely possible. I have been treating for 2 years and I'm doing a lot better. No one can tell you how long treatment will take though. I wasted 7 years with neurologists telling me I had Multiple Sclerosis before I was correctly diagnosed with Bartonella -- I had tons of burning, tingling, nerve pain, and neurological symptoms. All of those symptoms are gone for me now. I have not taken antibiotics, just herbs, supplements, and LDN (low-dose Naltrexone). Healing is possible. Find a LLMD who you trust.

So the same day I got the MDL labs, I ran a test through LabCorp, and it came back negative.

https://imgur.com/a/Mb7GXuj

Really not sure what to make of all of this. Would you guys still do the treatment based off bands 39 and 41 and positive igg for bart on only MDL?

Eddie353 said...
So the same day I got the MDL labs, I ran a test through LabCorp, and it came back negative.

https://imgur.com/a/Mb7GXuj

Really not sure what to make of all of this. Would you guys still do the treatment based off bands 39 and 41 and positive igg for bart on only MDL?

Yes. Definitely. You absolutely want to treat this. It doesn’t go away on its on.

I don't know why so many new people on here are in denial. You have Lyme and Bartonella. You need treatment, ideally you should see a good LLMD.

Neurologists will not help you, they will pump you full of horrible drugs that do NOT kill Lyme and co-infections. They will lie to your face. Ask me how I know.

Everyone on this board has been through this. I wasted 7 years of my life seeing neurologists. The entire time I had a Bartonella and Lyme infection DESTROYING my body.

I think the difference between the newly diagnosed and the people who have had a diagnosis for many years is that the newly diagnosed still have faith in doctors that have so clearly failed. And by that I mean doctors who have been indoctrinated that chronic Lyme disease doesn't exist.

We can't really blame new patients though, most of us were taught to trust doctors.

Eddie I really don't know what to say to make you understand all of this, but I would highly recommend watching the documentary "Under Our Skin". It really clears a lot up about your situation and the confusion behind Lyme.

You can watch it for free here. If it doesn't start playing try pressing the Play button again, for some reason you have to hit it twice sometimes:

https://archive.org/details/under-our-skin-2009-lyme-disease

Good luck.

Hey sorry I didn’t see your question… I pop in and out…

My intense twitching that I mistakenly diagnosed as benign fascile syndrome, as well as the migratory joint pains and the other strange symptoms all improved dramatically when i was treating…

I went way to long before realizing I had Lyme… a positive test is hard to come by, but when you get one consider it a light in the dark.

My twitching was widespread, migratory and very long lasting at times…

Lyme can cause major twitching but I read bart can as well . I may also have bart.

Eddie,

Oh, wait. . . I just went back and read your last post again. You said, “ I asked [the neurologists] about mold also and they said mold toxicity would present w much more severe problems, I wouldn’t be able to move my eyes basically.”

So, do have known or suspected mold toxicity, too? Did you have mold exposure? Have you done mycotoxin testing?

I can’t imagine any conventional doctors, including neurologists, knowing anything about mold toxicity unless they had experienced it themselves.

I actually came across some conventional medical data regarding aspergillosis of the CNS, so yeah, I guess they would know something. They know nothing of CIRS, biotoxin illness, the kind of mold toxicity you’re referring to.

I saw from your initial post that you had seen a Functional Doctor. That’s key to understanding a lot of this. Functional MD’s know how to test for, diagnose, and treat functional illness. Conventional MD’s don’t even know what functional illness is. All they know is a standard set of basic tests and how to diagnose and treat standard diseases like high blood pressure, diabetes, heart disease, cancer. Functional MD’s knowledge extends into a whole other world that conventional doctors have no knowledge or interest in.

Some conventional doctors would accurately diagnose a bullseye rash as Lyme disease if the patient reported a recent tick bite. This would be acute illness, which conventional doctors are trained to diagnose and treat. They are not likely to diagnose and treat chronic Lyme, as they really have been kept in the dark about the real existence and symptoms of chronic Lyme. Functional doctors and LLMD’s do know about chronic Lyme.

You have to see and understand the medical profession as it is. Most people don’t know how the medical profession really works until they get something like Lyme or mold and have to reach outside the “normal” medical sphere to find any accurate information or real help. That’s just the way it is.