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Hi Everyone,

I'm new here. An LLMD recently diagnosed me with borreliosis after 6 years of chronic illness, mainly characterized by extreme fatigue and all-over muscle and joint pain. I live in the highest-per-capita lyme area in the US. But many things made the diagnosis complicated. And I am still compulsively searching for confirmation since I had 2 negative western blots over the years.

Only lab confirmation has been below 60 CD57.

It seemed to all start after an abdominal surgey. I woke up with extreme pain and numbness in the left foot. I could not walk except with very gimpy gait for 11 weeks. No MRI but it was assumed by neurologist that I had compression injury to S1 nerve (ridiculopathy) thought to result from body position during surgery. (I never found medical literature about that type of surgical injury--usually such injury affects the femoral nerve.)

Other post-surgical sequela: I had excruciating muscle spasms all over my body, with worst of it in neck and upper back. I developed UTI, multiple times, then persisting mild, non-infectious cystitis. Pelvic pain continued and worsened with pain both in entire pelvic region and a sharper pain in lower right quadrant. Then significant eye pain and dryness requiring medication. Became extremely irritable, impatient. Many crying jags--and was NOT a crybaby before that. Very bad headaches, stiff neck. Pain in lower back for first time in my life. Sciatica, different from ostensible S1 damage. Pain in ribs. Bursitis in both hip joints but transient. Transient elbow pain. No memory of knee pain. About 2 years out, abruptly developed dyslexia. Increasing memory problems. Depression and anxiety. Compulsive rumination. Drenching night sweats that increase over period of years.

I was eventually diagnosed with fibromyalgia. Normal blood work ups.

Before surgery, ran 20 miles per week and was professionally high achieving.

My question: anyone out there who had a shock-and-awe onset of late stage lyme symptoms after surgery or injury, e.g., car accident? Many sources say this can happen--trauma activates or reactivates a latent infection, yet it's just a mention, no details....

Thanks for listening.
Hi Jen, you can't imagine how much I appreciate your response!

Maybe it's not uncommon to go through a doubting stage. The fact that some docs, such as my rheumatologist told me that the ELISA and Western blot are both about 90% accurate and that there are more false positives than false negatives, doesn't help.

But to hear your story about a post-surgical lyme experience--that's very confirmatory for me. i wonder if syphilis operates that way too.

Through the six years of illness (following the surgery), I thought no way could I have a tick on me and not know it! But just last week, I found two embedded ticks. One was on my forearm and had caused a little blood splatter that made it easier to spot. But the other, I never would have seen had I not been turning the back of the calf toward the light in a particular way as I was removing hair from my legs with an electric depilator (which did NOT remove the dang thing!). The one on my leg was, literally, no bigger than a poppy seed. I am covered with freckles and that makes it really difficult. Seems the the powers thought this was a good time to instruct me on just how easy it is the miss a tick.

Besides that, I'm a woodswoman. Desperately wanted to leave Florida where I had gotten a good job, because there were no woods. The first place I moved to in New England had a state park one mile down the road and I was so woods hungry (but so busy at my new job), that I would go into the woods at night, even through the winter (there was virtually no snow that winter) and would often sit on the ground in the dark listening to old growth white pines creaking in the wind. Nature is my religion, I guess. Or was!

May I ask what kind of symptoms you had after your surgery?

Because I continued to have bad pelvic pain, I had four more surgeries after the first one. The lower right quadrant pain continues to this day, altho ultimately it is the least of my worries. Extreme exhaustion and body aches are what keep me flattened and unproductive in my career.

I know symptom lists do have "pelvic pain" but that's very unspecific. Was any abnormality detected on your gallbladder after removal? If it all looked like problems somehow connected to the surgery, how did you eventually figure out it was lyme disease?
Have you had improvement?

Do you know of any scientific literature on post-trauma borrelia activation or re-activation? I haven't been able to find anything--just, as I said, brief mention of the phenom.

Again, thanks so much!





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