How Do These Symptoms Relate to Lyme?

Hi, folks,

I would appreciate some help trying to get to the bottom of some of my symptoms. If you have knowledge of how and why the following are associated with Lyme (and co-infections) then please let me know. They seem related to one another, possibly, hence my including them in the same post. Multiple ENTs and neurologists tell me I'm totally fine, so I'm hoping this community might have some more helpful answers. These symptoms all arose for me about a year ago, many years into my Lyme illness, not coinciding with any new treatment. I'm also interested in specific remedies for these symptoms, if anyone has ideas for those!

- Mal de debarquement syndrome (MDDS or disembarkment syndrome, the sensation of swaying back and forth as though I've spent a long time on a boat, only I have not been on a boat....)
- Coordination and equilibrium feel slightly off, like typing feels less natural, not quite sure when my foot will hit the ground while walking, altered depth perception.
- Sensitivity to motion, including someone sitting down on the bed next to me.
- Sensation of a flutter in the ear.
- Barometric pressure headaches, often severe, including dizziness, whenever the pressure drops.

Any ideas for me?
Thanks,
Sara (POTS, Lyme, ME, HPA axis dysfunction....)

I have heard of these various symptoms being associated with these infections (I guess one could say that about pretty much any symptom ha!). It would be interesting to see if your symptoms improve with further treatments for the infections. If I recall, you have not done much treatment for babesia yet, is that correct?

I used to get very bad barometric pressure headaches, for me it was likely related to babesia.

Thanks for the replies. Sorry my original post wasn't totally clear. I know that folks with Lyme and co-infections get these symptoms. I am hoping to learn which infections they are associated with and why - like if x microbe causes a deficiency in y which makes the z system overactive, causing inner ear inflammation (hypothetically). Does that make sense? I'm curious about the mechanism of action, the causal pathway, if anyone happens to know.

I have treated for all of my co-infections, but didn't target babesia (despite a positive PCR test) because my LL practitioners didn't believe any of my symptoms were related to babesia except possibly low-ish ferritin. It's also possible that the things I've taken for babesia weren't all that effective because I have an unusual species of it - babesia divergens. That said, a recent (past month) treatment with an AmpCoil (used, in this case, like a rife machine) blasted the heck out of babesia and jump-started a bunch of babesia symptoms for me for the first time! Monster herx.

I had not heard of a connection between babesia and equilibrium. Do you know how it manages to cause that, by any chance? I will pursue babesia more directly.

Thanks,
Sara

Hmm, maybe it has to do with how babesia toxins affect the ANS? This article doesn't talk so much about equilibrium issues but does mention babesia and the ANS. Unfortunately it doesn't get into the specifics of how the biochem actually works, just observational in nature. But of everything I ever read about babesia it came the closest in perfectly explaining my symptoms and why they waxed waned in concert (ANS getting triggered) https://conniestrasheim.org/blog/2017/3/6/a-deep-look-at-the-symptoms-of-six-major-lyme-related-infections

That's interesting about the rife herx! I borrowed a friend's machine, and was super skeptical. I was thinking ok let's see if this wacky thing can do anything and blasted myself for about an hour. I herxed for about a week, like getting hit by a freight train! similar to how antimicrobials make me herx. Turned me into a believer, I can tell you that!

I wish we knew a little more about the different babesia strains and if they cause different types of symptoms. I haven't been able to find much info on them, just anecdotal stories that some can be harder to treat than others.

Wow, I did not know that was called mal de debarquement, thank you for the info, that makes so much sense.
You are describing some of my exact symptoms, I am always struggling to describe my "vertigo", as it's not really a vertigo but "spaciness", problem when I am walking to make a step, or if I sit in a front seat and there is a car coming towards me, I need to look away, or if there is some motion on the screen.

I had this in some periods of intense mold exposure before I got sick (I realize now), and had it really bad when I got sick. In my case I can say with *almost* certainty that this is caused by mold toxicity.
When I get "dizzy" now, I head for the sauna (a regular finnish sauna) and after two good sessions it goes away. But that's now, at the beginning, when I was much more toxic, I experienced a terrible herx from a sauna, so one should be really cautious, perhaps start with no longer than 5 minutes at a time.
My experience with IR sauna is completely different, I don't get to sweat as much, it kind of just "stirrs up" my toxins, I sometimes walk out of it yellow in the face with dark circles around my eyes, and brace for feeling crappy for the next 2 days. It might be because it's known to mobilize mold toxins, I don't know.
I like the two saunas combined.

Anyway, I figured out my main problem is mold without help of any 'practitioner', so in my world everyone has a mold problem that they are unaware of. ;)