Babesia and Vestibular/Visual disturbances

Hello all,

Has anyone else had intense visual/vestibular disturbances that they've been able to attribute to babesia? I'm dealing with this (at the moment) disabling suite of vestibular symptoms including spinning vision, sound induced visual disturbances - the sound of my own voice and any other loud sound causes things to move around like a kid holding a video camera - hyperacusis, slight vertigo and an intense dream state/out of it feeling. I had all these last year but they went away for over a year, and I've been functional for well over a year on treatment but now can't drive safely.

I had these symptoms when I began treatment a year and a half ago, I thought they were borrelia related, as they resolved in a couple months with the first wave of doxy-based antibiotic treatments save for this general out of it feeling. They disappeared last year and haven't come back until this week. After having babs symptoms for several months this year I started babs treatment last month despite my repeat negative tests, went on mepron, began to feel much better, then accidentally spilled my last week of it and couldn't get a prescription refill in time, and that's when the vestibular stuff flared. I should be getting more mepron in the next few days. I'm hoping that when I go back on, this will calm down. My first guess is that it's a babs die off situation.

The other thing it could be is something related to biofilm disruption, as I've been on lumprokinase and have had really bad histamine/bart/mold symptoms as well. It's possible that the biofilm treatments have released some combination of bartonella/mold/perhaps borrelia that's causing this. My working theory of my illness is that I have a long-term biofilm bart/histamine issue combined with getting babs and maybe something else in 2020, when things really cratered. I had a decade plus of bad body pain, muscle spasms and pelvic pain worst in the nighttime, of the histamine/bart/mold variety preceding 2020 when it got into my brain somehow and I had a cascade of symptoms of all types. I'm certain babs was part of the 2020 shift but there are too many variables to isolate anything with confidence. Not sure when the borrelia arrived. I had originally I have an appointment with my doc in a few days that will hopefully lend some clarity to the issue (that's a big hopefully) but I thought maybe comparing notes with other vestibular sufferers would be helpful, as always right when I think I have this stuff delineated it all goes haywire on me again. I can't drive at present, and I'm supposed to flip burgers for my kids' school fundraiser on Saturday, and wondering if I'm going to be able to pull that off or if there's anything that may be able to help in the short term. I'm drinking copious amounts of alka seltzer gold, on glutathione, taking epsom salt baths, etc. and am still on doxy/hydroxycloroquine/clarythromycin and a ton of herbal supports.

Thanks everyone - this messageboard has been so helpful in dealing with this stuff!

Thanks Garzie,

I'll look into the Brucella for sure and try to get tested. The reason I think bartonella for the pelvic pain is the onset pattern - nocturnal and definitely histamine related. Not sure if Brucella behaves the same way. Also I've had multiple positive bartonella tests for different strains, first Vinsonii then Quintana and most recently henselae, which makes me think perhaps I've had it for decades. I grew up with cats and have been scratched many times. I also have a genetic condition that makes me produce thick biofilms, and have some vague body pains and stiffness when I was younger. My mold levels were also off the charts and my doc said she's had a lot of mold related pelvic pain over the years, so that could be it too. It's more like a regional pain syndrome - my whole lower body gets inflamed mostly at night - but it registers as "pelvic" pain since those nerves seem to be the most sensitive. Anyway thank you for the reply, it's helpful.

Hi Saraeli,

Thanks for the reply. I had significant mold exposure a decade or so ago when I worked at a very moldy record store and spent time digging record collections out of basements. Lately I've been really careful and did a full mold plate test in my house. As far as what helps, it's hard to say since I've been on so many things. I was on rifampin/rifabutin and a lot of antihistamines for the last year or so and it helped the pelvic pain a lot, I would say it got maybe 50% better, I could piece together 8 hours of sleep. My doc took me off the rifabutin to go after babs more aggressively, so it's very possible this is all bartonella related. I've been on a full mold protocol as well and gotten my numbers down considerably, maybe into the normal range at this point, so maybe that also helped, but I can't really think of a reason why the mold would have flared right now as I've been really on it about exposure.

I've found antihistamines to be the best of anything I've tried for the nighttime pain. Several allopathic doctors offered me stronger narcotic options - benzodyazapines, opioids, etc. - but I refused them all because at the time I didn't understand what I had and didn't want to be come addicted to pills, I tried gabapentin once and it kind of helped but I couldn't stand it.

I'm sorry you've had the same issues - it's so frustrating isn't it. My doc just ordered a genetic test for the 4G variant in the PAI-1 (SERPINE1) gene, which came back heterogynous, I think that means I have the mutation, I need to talk to her about it. I don't know if you've been tested for that but maybe that could be a useful thing to know. Apparently it means I produce thick biofilms, it also puts me at risk of thrombosis. It seemed to explain a lot. Good luck with your symptoms as well, I appreciate the response.