Can this be lyme?

I've been struggling with health issues for over 5 years. I've been tested for most things, including lyme's disease(multiple times). There was a point in time where i stopped believing that it could be lyme's and focused on other things, but i guess i am back questioning.

I'll explain my full situation below, but basically i want to hear your opinions on whether you think it is lyme or something like anxiety (hyperstimulation)

Around 7 years ago i noticed a tick on me, it wasn't engorged but i believe it did byte me, this happened in kentucky. I also live in Virginia, so there could have been other ticks. Just over 5 years ago i got severe digestive issues, bloating, gas, pain etc. I went to the doctors, but they never found anything. I had that for about a year and i could manage it pretty well by changing my diet. Then everything else hit me. It started with severe twitching and chest pain, following a stressful time in my life. Over time more and more symptoms started, but at the same time some symptoms left, only to come back months later or even never. Here is the list

Current:

- Twitching (All over, constant)
- Migrating pain in body
- Muscle weakness
- Chest pain
- Fatigue
- Anxiety, with occasional panic attacks
- Digestive Discomfort
- Tinnitus(Ringing in ears)
- Occasional Headaches
- Shortness of breath

Past( Not currently active)

- Lightheadedness/Dizzyness
- Brain Fog
- Tremors
- Bloated
- Constipation
- Neck stiffness
- Esophageal Spasms
- Migraines (Ocular)

I also run a pretty low temperature constantly (Average 97.6) and my CD57 is remarkably low 13 right now.

Now the evidence against Lyme

I've tested negative for ELISA, negative for Western blot. Negative 3 times for iGenix western blot (only band 41 IGG positive)
I don't get fevers unless i have flu
I never get night sweats
I can generally exercise without feeling worse, it's almost like i have more energy and i'm less fatigued
I am definitely somewhat of a hypochondriac, i can remember believing I had terrible diseases even when i was young.
My symptoms seam to increase or worsen with stress or anxiety.


Thoughts would be appreciated

Post Edited (Garion) : 2/17/2018 6:20:39 PM (GMT-7)

I agree with Girlie, you would be wise to be evaluated by an LLMD.

Thanks for the responses. I've been seeing a Functional MD for about a year now, that's where i got the CD57, and Igenix western blot done. Not sure if they are considered LLMD's or not, so i might get a second opinion.

Already did the Horowitz questionaire, i score around 50 but i feel it is very subjective. On the old test that would be high probability of Lyme but i heard he changed it in his new book, so now i'm i a probable(second highest group).

Magoo2, i haven't looked into dental, but i've had extensive parasite tests done, nothing strange has been found.

You asked for opinions so here's mine. Yes, I think it sounds like Lyme AND probably bartonella and/or babesia. For some, these coinfections can cause more symptoms than the Lyme.


"I've been struggling with health issues for over 5 years. . . . Around 7 years ago i noticed a tick on me"

That's a no brainer IMO.

WalkingbyFaith said...
"Even hypochondriacs get lyme disease."

Girlie,

That was priceless.

I hesitated to post it - because I thought it would look like I was saying Garion was a hypochondriac - but I’m not - just sayin’ if he is one - he still can get Lyme....

I'm getting an ispot test next week. Even if that comes back negative i will probably try some herbals to see if i can produce a herx.

What should i be looking out for if i herx? Just a significantly worseting of symptoms, or fever, headaches etc?

IMO I don’t think you should rely on ‘getting a herx’ for diagnosis. However if you do herx, that would be a significant indicator. The problem is, some of us have never herxed, myself included. Also, from what I understand everybody herxes differently. Also, my understanding based on the books I’ve read are that herbals work much slower than antibiotics and are less likely to induce a herx.

I really think you should see an LLMD. Starting the herbals now is smart. Cleaning up your diet and doing exercise you can is smart too.

Its hard to explain in just a couple lines why most doctors rule out tick borne infections before the patient even walks in the door to their office, but it is true.

You really need to be evaluated by a good LLMD

My 3 cents lol

Garion said...
The thing is i'm not sure i fully trust LLMD's. How do i know i have found a good one instead of one who wants to milk me for money? I'm currently with a doctor who is lyme literate, they are not ruling it out, but can't confirm it either.

I just feel so lost in terms of diagnosis.

Did you get a recommendation from other lyme patients who are seeing your LLMD?

You are getting tested again...so that may show something. Are you doing the Armin Labs testing?

I totally understand you wanting a test to confirm the clinical diagnosis.

My husband tested after I was positive with Igenex. He got an IND for bands 31 and 41.
We decided to do the Epitope test to confirm band 31 is indeed lyme.
And it was.

We wanted it on paper that he also has lyme disease. Our PCP has been very supportive of my diagnosis and actually even before my diagnosis....and we want to give her testing results if we can to support the diagnosis...so she doesn't feel she's going out on a limb. (Just in case she gets hassled...at least she has the positive results )

It's different story if we have a known tick bite, bullseye rash and the Dr. sees this (or a photo of it) ...then paperwork isn't really necessary.