My research. Immune system connected directly to dysautonomia and bladder.

[CallieAndToby]

This is what I've been posting on Facebook and getting ridiculous responses...... I feel like this is the only place I can come and talk to people who know about medicine! 

"So I want to have an intelligent conversation. I tried posting in the cancer group and people were telling me diet and nutrition to fix all my health issues...... Please don't say that. So I have rare blood cancer that is chronic and I have genetic mutation jak2. Well I've had dysautonomia and IC/bladder problems since I was like 6 years old. Diagnosed with blood cancer last year at age 34. They put me on Jakafi, a jak2 inhibitor, an immunosuppressant that literally wiped out my white blood cells and made me sleep all the time. Finally a local oncologist had me wean down and took me off of it b/c my numbers were so low. After getting off of this medication, my dysautonomia and IC got SO BAD SO MUCH WORSE to the point that I can't hardly leave my bed. It's really really bad. So basically, suppressing my immune system made my other conditions worse, much worse, especially dysautonomia. Now my first thought was an infection. Jakafi is known for allowing infections to go wild or making you susceptible to infections but I think there is an underlying cause. Also ivig is really the only thing that has helped, and saline iv's and they won't give me either. I wanted to know what y'alls thoughts were concerning the immune system, possible infectious disease, infections, and a huge worsening in dysautonomia and Interstitial cystitis. I googled infectious disease and autonomic dysfunction and found this govn article: https://pubmed.ncbi.nlm.nih.gov/28730326/ ." Now I have since found an article about the relation b/w the immune system and dysautonomia. In this article it mentions chronic infections AND "bladder outlet obstruction", out of curiosity I looked BOO up and it fits me to a tee. I think that's what's going on as no IC treatment has helped. Now there are fixes and minor surgeries and it recommends the ONE THING THAT HAS HELPED MY BLADDER - alpha blockers. As I've mentioned before Rapaflo is the only thing to help my bladder but I can't take it because it lowers blood pressure, I found that out the hard way. "Importantly many commonly prescribed pharmaceuticals for management of otherwise seemingly unrelated diseases, including depression, hypertension, heart failure, asthma/airways disease, overactive bladder/bladder outlet obstruction, Alzheimer‐type dementia and glaucoma, mediate their effect by moderating the peripheral autonomic nervous system and therefore may contribute to, or mask, autonomic dysfunction." Also, "

Suppression of chronic infections

As the inflammatory reflex can be activated by pathogens, reports of individuals in whom chronic infections are ultimately identified as the stimulus for POTS are to be expected. Local epidemiology should be taken into account in selecting relevant investigations for occult infections. It may be worthwhile prescribing antivirals at suppression doses for patients experiencing frequent recurrences of herpes simplex virus.

The last two come from an article: https://onlinelibrary.wiley.com/doi/full/10.1111/imj.13216

[Guest KiminOrlando]

That last link is a very good article. Thanks for posting this.

[CallieAndToby]

6 hours ago, KiminOrlando said:

That last link is a very good article. Thanks for posting this.

No problem. That last article is super excellent; it evens talks about treatment for bladder problems associated with dysautonomia, even etc stuff. 

[Guest KiminOrlando]

I printed it out and will be highlighting different sections to take to each of my specialists. It pretty much sums me up, even the Rheumatoid-arthritis.