Looking for input / advice

Hi all,

I am a 47-year-old active Male that lives and works on Cape Cod, MA.

My History:
In mid-2016 I had lots of body aches, a very high fever and a red banding rash on my torso. I went to my PCP and they ran various tests including a Full Tick Panel.
Test results at that time:
Babesia PCR Positive
LYME IGM > 15.5
LYME IGG < 1
LYME IGA < 1
Based on the result of that test, they prescribed doxycycline for Lyme (200mg x 28 days)
As well as azithromycin and atovaquone for the Babesiosis.
Almost immediately, I felt great. All my symptoms seemed to fade away.

In mid-2017 I began to experience body aches and thought it could be Lyme again. I went to my PCP and they ran the various blood test. Including another Lyme panel. That test came back inconclusive. My IGM level was slightly elevated but not enough to indicate a new infection. They prescribed another round of doxycycline just in case and after a few weeks, my symptoms cleared.

Then earlier this year, mid-2018, I started experiencing stiffness in my hands. I first wrote it off as overuse as I was working out a lot in the gym as well as doing a lot of heavy yard work. In September, my hands felt like they were getting worse so I went to see my PCP. She thought it might be arthritis. She ordered a hand x-ray and blood tested for signs of arthritis. Both were negative.

Then in mid-October 2018, I began experiencing some weird and concerning symptoms that would come and go. I returned from a business trip on a Friday feeling generally OK. By that Sunday I was in the ER with terrible flu-like body aches. I didn't have a fever or any sinus problems. Note that I am not the type of person that just runs to the ER for little things. Prior to this, I had been in the ER 2-3 times in 47 years for things like deep cuts that needed stitching.

My current symptoms (that come and go) include:
Slight numbness in my face on both sides. Mainly in my cheeks and forehead. No noticeable droop on either side though. I have feeling in my cheeks they just seem a little numb.
Jaw muscle pain on both side. I don’t think it’s the joint.
Headaches
Shocking / tingling feeling that runs down my legs and arms
Some muscle spasms and sudden body jerks when falling asleep
Memory fog. I often find that need to sometimes read things multiple times before I can comprehend what is written
Stiff joints
Muscle pain in back
Some leg weakness in my quads and calves

Since the start of these symptoms, I have been the ER 4 times. I have seen my PCP I don't know how many times. I have seen, with no exaggeration, six neurologists. Most of them conducted various reflex, sensation and walking tests. All said those tests looked normal. I had a brain and full spinal MRI, which were clean. No signs of MS or anything like tumors. I have had countless blood tests that all were negative or within range. I have two Lyme tests that have come back negative.

The result of the first Lyme test in October were
LYME IGM = 1.1
LYME IGG < 1
LYME IGA < 1

The results of the second Lyme test in early November were just "Negative". Sorry, I don't have the complete results to share for that one.

My PCP and the neurologists said they don't know what's wrong with me but they don't think its anything that is serious and will just pass in a few months. I have been prescribed gabapentin for nerve pain which seems to help some of the symptoms (not all) and allows me to cut back on the Advil I was taking (2,400mg /day).
I am both frustrated and concerned. I would appreciate any feedback from the community.

Thank you

Hi johnoncapecod, welcome to the forum! I think getting your case evaluated by an llmd would be ideal. Given the tick bite/lyme/babesia history and the multi-systemic nature of symptoms coupled with high-neuro involvement I think it is wise to fully look into lyme/coinfections. It's quite possible the infection wasn't fully eradicated and is popping back up. It would also be good to evaluate for coinfections.

Testing isn't great for the infections, so I wouldn't take a negative as proof of absence although many doctors do. Given that it is difficult to eradicate borrelia with triple antibiotic combos in vitro it's not surprising when patients who were previously treated for borrelia infection have a recrudescence in symptoms. It's relatively common actually.

In the meanwhile, you may want to try implementing some different detox methods. This can often help alleviate symptoms (especially if infections are the cause of symptoms).

johnoncapecod said...
Thanks for the input. Can certain Lyme symptoms come on so suddenly? I was surprised at how I had some basic symptoms at first for months and then over the course of a few days/weeks how they progressed so much.

Yes they can come on suddenly.
That’s what happened to me when I got sick - I would get new symptoms weekly -
I was over the top emotionally - so scared - weekly appts with my Dr - me crying and her sending me off for more lab work.

It’s tough - but this forum was a life saver for me.