Symptoms in spite of neg western blot

Friends,
I reside in Tn and was bit by a tick (small black one) back in aug 17. I actually didn’t notice it until I was in the gym and noticed a cascading rash. Rash was about 5 inches acros. Tick was still there and I pulled it off and sadly flushed it. A few weeks later, I visited the doctor with facial tingling (one side) and swollen lymph nodes. I actually thought it was from a new med that I was taking. When I stopped the med, the symptoms went away. I was sick a lot over the next few months with fever and sore throat (I thought it was just from moving to a new state). Eventually, my body settled down. A few months ago, I was riding with my dad in a car and he looked down at my arm and said “you got a tick” and pulled it off. A week or so later, my health imploded. I started with tingling on the back of my head and then quickly progressed to facial numbness and a feeling that my throat was closing off. Then I started having a feeling of tingling in my legs and one Armand oddly the two last fingers on my right hand. My blood pressure went through the roof and my doc put me on lisinipril. The symptoms persisted and I had to go back to see him. He did blood work (all levels checked) and i also applies for life insurance and they checked everything and it was also normal blood wise. My doc ordered an MRI on my brain and an EKG and stress test because of chest pain and palpitations. All was negative. He ordered a Western Blot from Qwest labs and it came back negative. Due to my symptoms, he ordered some doxy for me. The tingling has gotten a little better (I am on week two) but I also noticed small red dots on my chest and upper thigh. Not sure what those are about. Any ideas? I feel like the testing for this sucks and honestly don’t trust it. I have since learned that several neighbors of mine have been diagnosed with Lyme...
Appreciate you taking the time to read my post

Hi robert rose, welcome!


Sounds like you have lyme disease...unfortunately....

A few weeks of doxy will not be enough treatment.

If you'd like help finding a LLMD (lyme literate Dr.), just start a new thread: "Looking for LLMD in/near____" and fill in the blank with your location.

You can also contact myself or one of the other Moderators - we will check our list of LLMD's and send you options.

We encourage our new members to read through the information contained in the thread: "New to Lyme?..Start Here!"
It's packed full of useful information.

I'm sorry you have lyme, but glad you found your way here.

oh...and the Quest test for lyme is not a good one...if you do want to test - I recommend you do so through Igenex Lab in California. You can call them and they'll send you a test kit.
The Lyme WB IgM and IgG for $250 is the best bang for your buck.

We can help you with your test results...once they're in (approximately 3 weeks for them to process)

Testing does suck!!! Tests with "negative" interpretation are referring to the surveillance case definition. It does not mean a person does not have Lyme. Many, many of us here tested negative to the CDC surveillance definition, but actually have the infection (myself included).

You will probably need to get an appt with an LLMD. Most mainstream doctors will say that you were "cured" by the course of doxy they gave you. Obviously you aren't cured if you are still sick... but that's another discussion altogether.

Sometimes ticks give us more that just borrelia burg. You really should get evaluated by an LLMD that can help you sort it out. People here can help you find one.

Noah2112 said...
There is no test that can tell you if you have an active infection of Lyme, a subject of much contention in the medical community. They’re working on one at John’s Hopkins University, hopefully that’ll pan out soon. In the meantime all they can do is test for antibodies, and not everyone produces enough to show up on the western blot tests. Why this is, I don’t know, but it’s a documented occurrence.

Well there is the pcr - detecting the dna of the bacteria in your blood (or urine)...lots of false negatives, but a positive means it's there...

Just found this page that references the PCR test on Lyme by the Mayo Clinic Labs. Also of note: their description on Lyme disease on the labs page mentions the coinfections and the chronic presentation of the illness. I find it amusing (in a gallows humor sort of way) that they so casually acknowledge the existence of chronic Lyme plus co-infections while the Mayo Clinic doctors steadfastly refuse to accept it.

https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/87973