My Symptoms - Maybe Lyme?

Hi everyone,

New here, 33 years old, and live in MN. I've been dealing with some scary symptoms since the first week of December and I've been going down many rabbit holes trying to figure out what's going on with me. I'm at the point where I'm suspecting Lyme of some sort (and hopefully not some other worse alternatives).

It all started around 12/9 when I noticed my feet were feeling numb. This lasted for about 2 weeks, which is when they were no longer constantly numb, but I was still getting tingly sensations. At that same 2 week mark, I noticed that my fingertips were sensitive and a little darker than the rest of my hands/fingers. During this whole period, I was also very anxious and jittery. I believe I was having myoclonic jerks this whole time as well, but not muscle twitching. I got an MRI w/ contrast towards the end of December and ruled out MS, but then my muscles started twitching about a week later. I'm talking all muscles, all over the body, pretty much all the time. This is still happening. I had an EMG a few weeks ago and it indicated "mild sensory neuropathy" in my legs and this: Although F waves are mildly prolonged; currently there is no electrodiagnostic evidence of acute demyelinating polyneuropathy (AIDP). All examined muscles were normal in the EMG. The EMG was like 5 days after the muscle twitching began. All blood testing has been normal. No deficiencies, no indications of auto-immune diseases, and no heavy metal toxicity (although idk how reliable these tests are). No clinical muscle weakness, but a lot of random pains and weird sensations in my wrists, arms, palms, etc. My arms also go numb very easily at night when sleeping even though I had normal nerve conduction studies and needle EMG in my right arm.

I have spent a ton of money on appointments with doctors and getting comprehensive testing done and I'm wondering where I should start on this journey in determining if it is Lyme. Not sure if I can afford a LLMD at the moment... is there anything I can do on my own?

I am awaiting the results of the Igenex Lyme Immunoblot IgM and IgG. Will that be a good indication? Do my symptoms sound like they could be due to Lyme? Should I have gotten more tests from Igenex, like the Bart one? They are very expensive tests that insurance doesn't cover.

I live in MN and play a lot of golf. I have purchased some Lyme books from William Rawls and Stepher Buhner, but haven't started them yet.

I am sorry for the long post, but need some help here! Thank you so much.

Hello and welcome to our forum

you have made a good start on trying to rule out other things before concluding lyme - well done

yes, the Igenex lyme immunoblot is useful but we should qualify that to say, as per all current tests - not perfect - that said, if you post the results here people will be able to give some feedback

bartonella is worth testing in my view as your symptoms match microcirculation issues quite well
the bart multispecies immunoblot by igenex is one of the better bartonella tests out there - in that it looks for more than one species - and has multiple antigens so has more opportunities to find infection - but sensitivity is still an issue with all indirect tests ( serology / immunoblots are indirect methods)

another option is Galaxy diagnosis's - DD ePCR with triple draw - is about the best test for bartonella out there - but is expensive

the books you list are well known titles in the category and well worth a read
buhner focusses on herbal approaches to lyme - but has a huge amount of info on the biology of borrelia and co-infections so it is very informative
rawls focusses a great deal on all the co-morbidities that can come along with lyme - like mold illness etc and also focusses on alternative treatment methods

another title for balance would be Horowitz's "how can i get better" - which again has a very good overview of the condition and a very comprehensive treatment model - his approach includes natural substances but focusses mainly on pharma treatments

Horowitz also has a peer reviewed questionnaire that he has demonstrated, high scores on correlates quite well with a persons lyme infection status
i suspect you would have a high score - just based on your symptoms description - but it might help you to sanity check whether this makes sense for you to pursue the lyme diagnosis or re-asses

its available online here - https://doyouhavelyme.com/online-test-form/

good luck and feel free to ask questions

we are a helpful bunch

Welcome to the forum! I won't repeat the solid advice from other posters, but it does sound like tick-borne disease could be an important part of the picture, especially since you have managed to rule out so much else already (in only nine weeks! I'm amazed by the responsiveness of your doctors and your own self-advocacy!).

Another possibility for sudden widespread neurological symptoms is mold exposure. Was anything going on for you in early December that could have exposed you to large amounts of mold or another environmental contaminant? Just another idea. Viruses also can trigger syndromes like this, if perhaps you had a virus at some point in November.

I am very fond of Buhner and Rawls. Their books are informative and also provide a framework for treating these chronic illnesses as more than just the Western just-kill-microbes approach; often the body needs to be approached as a whole, optimizing digestions, the microbiome, diet, stress management, the nervous system, the immune system, structural issues, sources of toxicity, etc. One more resource that can be a good primer is this site: treatlyme.net

I've had most of the symptoms you describe, and I understand how disorienting and freaky they are. You might want to try supplements and practices that help your nervous system to chill, so that you can find some measure of symptom relief while you work to identify underlying causes. Options include magnesium, omega 3 fatty acids (like in DHA or fish oil), CBD (and/or other cannabis variations, depending on what's legal where you live), curcumin, lion's mane mushroom, acupuncture, craniosacral therapy, and any of the slew of practices that regulate the nervous system behaviorally (meditation, mindfulness, tapping/EFT, yoga, vagus nerve toning exercises, breathing exercises, etc.). It's great that you're looking for underlying causes, and I strongly encourage you to keep doing that! I just imagine you'd also like to feel a little better in the interim.

Rooting for you!