First off, I have to say I was shocked at the response I got on my last blog entry. I halfway expected people to yell at me for saying it, but I’m glad everyone connected with it so much!
As for me, I had no idea it’d already been two weeks since I last posted. I have been more social than ever (online), and also more fatigued than ever. Because of this (and my arms, of course) I’ve had to choose my activities wisely, and pick one main thing to do per day.
The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:
Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of die-off in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs, right?
If that’s not it, then I have genetics to thank. But I’m going to go with “will hopefully go away as I treat Mycoplasma” until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)
Also, I’m convinced I had PANDAS as a child. It stands for “pediatric autoimmune illness associated with streptococci,” and is basically what it sounds like: An autoimmune response to a streptococcal infection that causes damage to the brain, primarily resulting in obsessive-compulsive disorder and tic-disorders. In the “My Story” section I ponder over whether or not something triggered my childhood disorders of OCD and Tourette’s Syndrome, whether it could have been a brush with tick-borne infection, or something similar. But this makes too much sense…
- My immunodeficiency making me extremely susceptible to infections (especially Strep),
- a history of autoimmune responses to things (like vaccinations),
- the fact that my OCD and Tourette’s were acute-onset…
With that lovely combination of factors, I was practically a walking target to get M.E. in the future, wasn’t I? :\
People with a history of PANDAS are supposed to stay on prophylactic antibiotics until age 21… Why? To prevent additional episodes of this infection-triggered disorder that could lead to further brain damage. Now I wonder, if my doctors had known about that… If I had been on prophylactic antibiotics until age 21, and that had prevented the two years of slaughter my immune system went through, contracting every infection that passed my way after I got that Hepatitis B inoculation, if the bug that triggered my M.E. would have still triggered it, or maybe I wouldn’t have gotten it… It doesn’t quite matter, at this point. But. It’s interesting. Like another piece of my puzzle…
On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk to people; I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginning signs of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under stress.)
Treating Bartonella helped it A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics). That would suggest to me that the Mycoplasma may have been the trigger, while Bartonella aggravated it because it agitates the nervous system so very much.
This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.
Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.
If anyone has any experience or information they want to share with me about PANDAS, suspected PANDAS, or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.
♥ a rainbow at night