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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks for the reply. What is the email or telephone where to ask for details? Greetings.
Can I ask what language you speak? If it is Spanish, her office is in south Florida where I would think they would have Spanish-speaking people available to translate.I do not speak english.
I don't think I mentioned earlier that MALS causes POTS in about 20 % of cases and many find that fixing MALS resolves POTS too. Possibly to do with the vagus nerve being compressed in the celiac plexus too.I must add to those that don't know. I have also seen 3 different POTS specialists: Dr Grubb, Dr Chemali, and Mayo Clinic. None of them have been able to help me. They checked me out for a lot of things, but no therapy or drug they prescribed did anything for me.
Mast cells and neurons (of the vagus nerve for example, but of course not only that) in the gut "communicate" with each other, i.e. mast cells substances trigger substances like cytokines, neurotransmitters etc., and cytokines, neurotransmitters etc. cause mast cells to release their substances, like histamine. While calcium signaling can increase the number of mast cells, neurons can increase histamine release (while the mast cell numbers remain unchanged). So it could be that mast cell activation leads to, for example, neuroinflammation, which again "tackles" mast cells and so on...And on the other hand, neuroinflammation can lead to mast cell issues which often lead to gut problems. Maybe that's the connection of "mast cell problems" and autonomic nervous system dysregulation.Have you tried a short test of H1 + H2 antihistamines? Sometimes that can help if gastric issues such as you describe are due to MCAS. The GI system has a lot of mast cells.......... Most MCAS doctors recommend trying this as a first step to see if you notice an improvement if symptoms indicate MCAS may be a possibility.
I show high titers to Parvo and Coxsackievirus, they believed that the Coxsackie could be active...
Autoimmune panels are normal again along with all histamines. Natural killers cells are normal but she mentioned they don't show much cytotoxicity. I'm not quite sure what she meant by this?
Sorry, I didn't realise you had already had surgery for MALS. Not that that change things however and if you join any MALS support group, you will find a significant percentage of those having surgery get little relief of their symptoms.I'm pretty sure my MALS has been exhausted. The surgery was successful in returning blood flow and clearing any nerves that were trapped in that area. We have the CT scans the surgical notes to prove it. I felt no better after surgery and continued to be bed bound for 5 months following that surgery, due to my illness not the surgery.
How is this possible?The bad news is she told me there have been lawyers involved recently that are cracking down on doctors treating patients outside their state border. So, the NP was limited for some reason as to how we should continue forward. It was a big let down.
How is this possible?
Hi @Belbyr, you sound quite severe, and I just wanted to warn you off doing V02 testing. Unless for insurance reasons to prove disability, I don’t think it helps in a treatment plan. I permanently lost about 10 to 15% of function from doing it.. it is dangerous for us.I still want to do the VO2 Max testing on the bike, also she recommended hyperbaric treatments and getting oxygen in since there seems to be evidence coming out that we are low in that area and every time I've gone to the ER my lactic acid levels are up.
I didn’t have any side effects. It just didn’t work for me. And whether more is not better or worse is not really established. There just isn’t enough research on our disease, or on any disease.More is not better. 2.4ATM is a lot more and I'd worry about too much oxidative stress.
@Belbyr
Have you ever tested for Total Bile Acids / TBA? Have you ever tested for gallstones? TBA is a blood test. I wonder why you have so many GI Issues and what tests you have done specifically to identify the cause(s) of these problems.