So I've finally gotten around to posting a short intro, after losing a huge one I typed up initially a long while back. So ill start out by covering the basics, and maybe edit it and update with more information later.
Basically, I don't have MS (well... nothing was on the MRI in January, when symptoms started months prior) but have neurological symptoms which mimic Parkinsons/Lewy Body more than anything (though im only 31) with cognitive jumbling and impairment. So, horrible nightmares and disturbed sleep, mixing up words in my head, anxiety, some heart abnormalities, muscle tightness and pain, more recently muscle spasms and twitches, and a tremor.
A neurologist said my tremor isnt the classic Parkinsons tremor, but I fear I may just be in the early stages. I first thought Parkinsons/Dementia, then learned that my symptoms were very common with mold toxicity, then also learned they were common with Lyme disease and co infections. Also, I studied medical science for a few years before changing careers, and have a family of doctors, so have a tendency to go to the more exotic and terrible scenarios quite quickly
For years I had strange symptoms and went to see a psychologist, and bought into the idea that it was all psychological, and I had health anxiety. Which I obviously do, but it turns out I have a lot more! I've tested positive to CPn, so that's definitely an issue. I also definitely have mould exposure and what Dr Shoemaker would call "CIRS". And I most likely have Lyme disease, maybe other co infections. Lucky me, right.
Anyway, I found this site a couple months back, after a terrible reaction to NAC. Thank you so much to everyone who works to put this site together, keep running, and everyone who posts. Anyway I then got tested for CPn, and IgG or IgM was positive (can't remember which), the other one was negative, and IgA was low positive. My CPn doctor said that indicates its in my blood vessels.
I know Cpn is an issue, mould is an issue, and Lyme probably is. Luckily Lyme and CPn are treated quite similarly. .
Ive also had some serious probs taking tetracyclines (doxy - liver enzymes elevated, mino - terrible gut issues) so right now Im just on roxythromycin 300mg, and have done two days of tinidazole. I may introduce mino or doxy again soon, but also have to do some mould toxin binding treatments first (cholestyramine) and heard its a better idea to treat that first, before killing bugs, at least in the case of Lyme. Because as we know killing bugs = releasing more toxins, so its best to clear them out first.
My main problem is knowing exactly WHICH of the CPn, Lyme, mould, is my main problem. My symptoms seem to match up far more with mould than Cpn. The other thing is, that my Cpn Dr said he hasn't really seen patients with Parkinsons who have the Cpn. Now Parkinsons looks very much like an infection, but its also well known that toxins contribute to it, and mould toxins specifically. So herxing by killing CPn / Lyme could well make me worse by adding to the toxic burden. And I'm afraid that I may also have mould growing inside me or something, and the Abx might make that worse, since moulds can overgrow when you take Abx
Anyway, to address this, ive had another MRI done called NeuroQuant, which compares your brain volumes in different areas to aged matched controls, and can apparently tell you if the changes look more like mould toxicity, or Lyme. I should have the results back in a week or two.
Google Dr Shoemaker's work if you're interested, his work on mould, lyme, and biotoxins in general, is really great. Published loads and loads of work on it, all very very evidence based, considering he was working in a very underappreciated area, much like CPn and its treatment. Im sure hes been mentioned here, but i havent come across it yet.
Anyway maybe that'll do for now...