Possible Lyme (Need LLMD LI/NYC)

Hello everyone

Back in September I started feeling tingling in my right arm and leg. I started feeling really lethargic & would often get chills. Symptoms eventually got worse a few weeks afterwards when I smoked some weed & had a panic attack (?). I visited the ER with tunnel vision, anxiety, dizziness, shaking , chills etc. the ER neuro asked if I had groin numbness (which I didn’t have at the time) & also asked if I had MS in my family. Shortly thereafter I did start experiencing lack of sensation on my penis which really scared me. My eyes were always sore and felt like each eye was seeing two separate images. I ended up see in a neurologist who ordered an MRI of my brain and c spine which came back clear (no optic neuritis either). I started feeling slightly better over time but I’m just always anxious and the tingling numbness type feelings remained. I saw an MS specialist & he reviewed my mri & said he couldn’t definitively tell me that I had MS but he couldn’t rule it out either based on symptoms. at some point around then I got fixated on Lyme and got tested twice, once at an urgent care clinic and once through the MS specialist. The clinic test came back negative with a reactivate band 41. The quest test came back negative with no further information. I’ve had a few CBC blood tests over the past few months and it always comes back slightly off with RBC, WBC, MCV , etc. no doctor seems concerned but it makes me sort of believe the answer is in my blood. My symptoms are so random and sporadic that there’s no way I could list them all here fully. Lately I’ve been feeling shortness of breath, lack of penis sensation is slightly better but still worries me, numbness that’s worse in the morning, etc. one of my eyes seems misaligned at random times. Color saturation is off when one eye is directly exposed to sunlight (if I’m driving the eye closer to the sunlight is fine but the other eyes color is off). My right eye also seems to not have as wide of a scope of vision as the left. My fingers get swollen and itchy at the joints it seems. On random days, my knee will hurt badly when I walk. Some days my lower back is really achey & walking requires more energy. My balance isn’t as good as it normally is. My symptoms are so weird & scary. Does this sound like Lyme and/or co infection? I would like to see an LLMD this weekend in Long Island/nyc that’s produced great results and hopefully takes insurance. No doctor will even think about giving me antibiotics.

Hi, TerryLyme, and welcome. I'm sorry to hear you have this troubling array of symptoms. We're happy to help you sort through things as best we can!

Your concern about tick-borne illness makes sense. Your exposure sounds likely, and Lyme and other co-infections can cause many neurological symptoms, including everything you describe. Mycotoxin exposure (from molds) can cause serious neurological issues as well.

Your concern about MS makes sense, too. People can have both, and some believe anecdotally that untreated Lyme can worsen MS or even cause MS, ditto for Epstein-Barr virus. I am by no means an expert, but if you have had a lot of symptoms for a while now, it seems like there would be evidence on your MRI if MS is the culprit.

And LLMD is a good bet for testing and diagnosis, but keep in mind that all tests for Lyme are notoriously unreliable. Many LLMDs do order tests, but diagnoses also factor in signs and symptoms. Testing can be a Western blot (most likely through IGeneX lab) or a PCR test, and you also should be tested for co-infections because Lyme rarely travels alone. Many will test for Mycoplasma, Bartonella, Babesia, Epstein-Barr virus, Cytomegalovirus, Chlamydia, Anaplasma, and Ehrlichia. An LLMD might also do other blood work to test for immunological and inflammatory markers that can be abnormal from Lyme, such as CD57 and c4a. To look for mycotoxins in your body, do a urine test from Great Plains lab. To look for mold growing in your home, do an ERMI dust sample test. You might also want to evaluate for mast cell activation issues, heavy metal toxicity, and electromagnetic hypersensitivity (this last one might be too fringe for a lot of folks, but it does happen).

Have you heard that it is typical for cannabis to give MS patients panic attacks? I ask because you seem to draw that conclusion, if I am reading your post correctly, but I've heard the opposite. I hear a lot about people using cannabis to treat MS! Which I guess also reminds me to mention that MS is very treatable a lot of the time. I read a great article about using diet (basically vegan + fish) to reverse MS and the reasons why dietary treatments cannot be recommended by mainstream doctors in the United States. https://longreads.com/2016/09/14/stat/ I know you don't want to have MS or Lyme, but neither is a death sentence! There is reason to hope, regardless. But we all understand how tough this stage is, trying to figure everything out amid freaky symptoms and brain fog!

Please keep asking questions and let us know how everything goes!

Have you seen an eye doctor yet? I have eye issues, particularly retinal swelling, from Bartonella, as well as proprioception issues. I know how tough and scary vision symptoms are.

If you want doctor recommendations in your area (I think that's what you are asking at the end of your first post?) then start a new post titled "LLMD in [Your Town]" or search the archives here for recommendations. Make sure you enable your email address in your profile so people can email you the names, as we cannot post doctor names on the site, just initials. Be prepared for a long wait before someone can see you, unfortunately. Most do not take insurance, but a few do.

Hi again,

In the New to Lyme? thread that stays at the top of the list of posts, there's some good information, including a breakdown of the meanings of Western blot bands. 41 means a spirochete has been detected, which may or may not be Borrelia bergdorferi (the classic Lyme species), but it seems reasonable to suspect that's what it is in your case. (I think the most common spirochetes are syphilis, Lyme, and leptospira.) These tests often are different each time you run them, and can look different at different stages of illness. Band 41 might be enough to back up a clinical diagnosis (based on signs and symptoms) if you see an LLMD. Someone who is not a Lyme specialist will tell you it's useless.

Glad your optic nerve looks good.

While you wait on an appointment, I would encourage you to do a few things to strengthen your system overall. Treatment can be rough in that killing these bugs brings on a die-off reaction that can feel worse before it gets better, and a system that is functioning optimally is more likely to hand it all well. How is your diet, digestion, sleep? Maybe start by reducing processed foods, prioritizing sleep, taking magnesium and probiotics, and trying supplements to reduce inflammation (such as curcumin). Essential oils can calm brain inflammation as well, as a short-term remedy until you can address root causes (rosemary, lavender, frankincense).

Others will have ideas for you, too, probably. Please feel free to keep us updated and post any other questions!

Band 41represents the flagella (tail) of a spirochete.
While it’s not lyme ‘specific’ there aren’t a lot of bacteria’s that it could be.
Lyme, peridontal disease, Pintas and Yaws, and Relapsing Fever are the ones I’ve read that could result in band 41 showing up.
If you don’t have those - it’s likely lyme.