November 5, 2015 at 1:28 am #914TBirdParticipant
I just watched the newest “POTS-What Have We Been missing?” videos today. Wow! Lots of great new info! Dr. Diana, if you have the chance to address my questions, I would truly appreciate it!
Here are questions that came up for me as I was watching the videos and looking into Parasym Plus…
1) Is Parasym Plus designed to help lower ICP by way of the vagus nerve? Or it is assumed that Diamox would be used to work on lowering ICP first? (My fear of Diamox runs deep, but I am at the point where I am considering it because nothing else is helping)
2) Is there an autoimmune component to the anticholiergic involvement? I remembered looking at an autoimmune dysautonomia test from Mayo clinic and went back today and saw in the references that it mentions “ganglionic acetylcholine receptors.” Is this related? http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/89904
3) Does the APOE gene have anything to do with all of this? I have the e4 type (highest risk) and looked into acetylcholine as an issue before, especially when Benadryl during a bad flare consistently gave me sleep paralysis! I saw in the references on Parasym Plus that there is mention of Alzheimer’s. I wonder if this gene is a clue… If not, are there others that are? (I know not MTHFR, I don’t have it at all either!)
4) How does Chronic Lyme fit in with the EDS/MCAS/POTS, etc? (As I’ve been diagnosed with that too)
Thanks for your time!November 10, 2015 at 6:10 pm #5684Dr. DianaKeymaster
Hi TBird, Thank you for your great questions! I would need to write a dissertation to address them fully, but I did want to touch on a couple of things. First, the vagus nerve does not directly influence CSF production. As far as chronic Lyme disease goes (and other conditions like mold exposure), focus should probably shift from the trigger causing POTS and Chronic Fatigue, to our abnormal response to these events. When we treat the abnormal response (first we need to identify it), we can usually recover. Does that make sense?November 23, 2015 at 1:02 am #5721TBirdParticipant
Thanks, Dr. Diana. I just saw this reply. 🙂 There are so many things connected to this, it’s crazy. I’m always being led further and further down the rabbit hole, it seems. But I have a promising link to nailing down another condition I have that has a huge overlap with EDS/hypermobility (50% of women clinically present with hypermobility with this issue, according to one of the leading experts on this condition) that it a totally new direction that I hope helps to fill in some of my missing pieces. I appreciate all the information that you share. it has been helpful to share it with open-minded professionals and I am closer and closer to getting to the bottom of this with all the connections you’ve uncovered. 🙂
- You must be logged in to reply to this topic.