Mycoplasma and Reflections on Having PANS/PANDAS

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 herxing/die-off/inflammation 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?

But if that’s not it, then I have genetics to thank. I’m going to go with “will hopefully go away as I treat Mycoplasma” theory 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. :)


I’m convinced I had PANDAS (PANS) as a child; it just wasn’t a diagnose-able condition back then. If so, then I definitely still have it, because my body has clearly reacted the same way as an adult. This might sound like baseless self-diagnosis but this will make sense as I’ll discuss further below.

It stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,” and is basically what it sounds like: An autoimmune response to strep that causes damage to the brain, primarily resulting in neuropsychiatric illness like obsessive-compulsive disorder and tic-disorders like Tourette’s Syndrome. (PANS refers to “pediatric acute-onset neuropsychiatric syndrome,” the same as PANDAS but without being caused specifically by streptococci.) In the “My Story” section, I ponder over whether or not something triggered my childhood-onset disorders of OCD and Tourette’s Syndrome, whether that might have been a brush with tick-borne infection, or something similar. After realizing there is an actual condition that does exactly this, it all makes too much sense:

  • my primary immunodeficiency disease makes me extremely susceptible to infections (especially Strep)
  • a history of autoimmune responses to things (like vaccinations)
  • the fact that both my OCD and Tourette’s were acute-onset
  • those conditions flare up whenever I get additional infections, especially bacterial

As Lisa Wolk-Kilion writes for one national magazine:

“Although the word ‘pediatric’ is in both names, it is surmised that the disease is not merely a childhood one. . . The encephalitic-type illness is brought on by an infection, resulting in antibodies that barrage the basal ganglia. … Once the autoimmune system is damaged, any germs can trigger a PANS flare.”

So, an autoimmune disease that responds to infection by attacking your own brain, instead. I was practically a walking target to get myalgic encephalomyelitis in the future, wasn’t I? :\


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 for three months. I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginnings 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 emotional or physical stress.)

Treating Bartonella helped the dystonia symptoms 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).

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.

[ETA 2017: It’s been 5 years since this post and Mycoplasma pneumoniae has now been recognized to be a determining factor in the diagnosis of PANS, which all these additional years of disease and severe psychiatric relapse have unequivocally proven me to have.]

“The association of mycoplasma with diseases like arthritis and chronic fatigue syndrome, which has been implicated with a response of the body’s immune system against its own components, is consistent with the growth and behavior of mycoplasma. The absence of a conventional cell wall allows mycobacteria to penetrate into the white blood cells of the immune system. Because some mycoplasma will exist free of the blood cells and because the bacteria are capable of slow growth in the body, the immune system will detect and respond to a mycobacterial infection. But this response is generally futile. The bacteria hidden inside the white blood cells will not be killed. The immune components instead might begin to attack other antigens of the host that are similar in three-dimensional structure to the mycobacterial antigens. Because mycoplasma infections can become chronic, damage to the body over an extended time and the stress produced on the immune system may allow other microorganisms to establish infections.
“Strategies to eliminate mycoplasma infections are now centering on the strengthening of the immune system, and long-term antibiotic use (e.g., months or years). Even so, it is still unclear whether antibiotics are truly effective on mycoplasma bacteria. Mycoplasma can alter the chemical composition of the surface each time a bacterium divides. Thus, there may be no constant target for an antibiotic.”
Mycoplasma Infections via Encyclopedia.com
World of Microbiology and Immunology | 2003, The Gale Group Inc.

If anyone has any experience or information they want to share with me about PANS/PANDAS or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.

a rainbow at night


Updated December 2015 to add helpful links about PANS/PANDAS
Updated May 2017 to add more helpful links and confirm diagnosis

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