Lots here - but bear with me.
TBD = Tick Borne Diseases - sorry. This include Lyme, Babesia, Bartonella, Bartonella Like Organisms, Ehrlichiosis, Mycoplasma etc.
I believe that Dysautonomia (whether secondary or primary) and in fact all neurodegenerative diseases of unknown etiology are the result of one of a handful of actual causes. I also believe that multi-system Dysautonomia is central in origin and a degenerative process as well. Probable causes (in no particular order):
- Infectious Disease (Bacterial (including Lyme/TBD), viral (e.g. Stanford study on effectiveness of Valtrex on Chronic Fatgue patients), etc.)
- Autoimmune (which can be caused in a couple ways)
- Genetic/Hereditary (no proven link in most idiopathic cases)
- Cell/Mitochondrial Dysfunction/Death Theory (which is gaining some momentum)
- Environmental (toxins, severe allergy leading to autoimmune, etc.)
So my thought is rule out what you can and try and treat the ones you can (e.g. Infectious disease = antibiotics or anti-retro virals). Unfortunately some causes may not be treatable for various reasons.
I don’t believe everyone with Parkinson’s has Lyme but there is something causing the problems and it very well is likely one of the above and I think that Infectious Disease or an autoimmune response can cause it.
Thus, the theory re: Lyme and Dysautonomia is that neuroborreliosis or anther pathogen that has penetrated the blood brain barrier is infecting the brain and killing/harming brain cells and/or cell communication - the result of which can be brain degeneration, atrophy, lesions, and ineffective synpase communication. Depending on the part of the brain that has the largest pathogen load (in that theory), the clinical symptoms may focus more in a presentation with dysautonomia, parkinsonism, cognitive impairment, sensory impairment, etc. or of course a combination.
Personally, I stumbled across my first LLMD and went to him as primary care with no knowledge he was a LLMD (he took insurance at the time). It was his thought to look into lyme as a cause of some problems I complained of.
I initially was diagnosed with Lyme clinically but with some highly suggestive test results (multiple positive and indicative bands). Testing at an additional lab more recently (not IGenex) showed CDC positive WB and thus confirmation of clinical diagnosis. In between, I was diagnosis by my LLMD as having Dysautonomia and POTS likely caused by Lyme after some of the symptoms you list and autonomic nervous system testing.
As for your trigger question. Again, it depends on the theory you ascribe to what the underlying cause is. Most people suggest that there can be latent lyme which is exacerbated by a shock to the body (flu, accident, stress, etc.). Thus you body’s immune system fights it and you are not symptomatic but the trigger will cause an imbalance and your body can’t handle the fight on its own. But it also could be likely your trigger was an unknown tick bite (MD is endemic) or exposure to another pathogen in Africa). I wouldn’t take too much stock in trying to pinpoint it - it would answer some question but not many. If your onset was full on all acute at the same time - then this would point to an acute trigger - possibly infectious. If it was more gradual - a new symptom every couple weeks/month - then it may be the former theory.
I believe that you should look for the “cause” of you Dysautonomia. Most doctors who specialize in the autonomic nervous system (I know a good Dr. in Baltimore if you haven’t found a specialist) will treat symptomatically hoping the underlying cause resolves itself. In some cases it may but it can often progress leading to further symptomatic treatment. Going to a LLMD will help you explore if Lyme and company may be the underlying cause (it may not be). But if it is and you can get effective treatment (another if with Lyme - some people have great/full improvement, others do not even with aggressive treatment), then underlying Dysautomia symptoms may resolve. It’s a possible answer that is worth pursuing.
These are just my thoughts - not that of Dr. - take them for what they are worth. But I would recommend you see one.
Lastly - here is the presentation. It was actually one he made at the recent ILADS conference. I believe its in the public part of his website so there shouldn't be an issue with sharing.