Need Doctor recommendation for Southern California, please!

[VFranco]

Hi everyone, I'm hoping you can help me.....I have Ehlers Danlos, Mast Cell Activation Syndrome, POTS, OA (severe) at all levels in spine, compound heterozygous MTHFR, and CFS/ME with Immune Dysfunction - my numbers plunged badly in the last year (EBV shows that I might have an active flare going on now?)....and a month-long low grade fever that is plastering me to the bed.

HELP!!! I'm really scared. I can barely shower anymore. Can anyone recommend a doctor who can help with the ME/Immune Dysfunction in SoCal?? I'm a rather difficult case because of the mast cell disease, so infusions might send me to the ER......have to be SO careful. I need a very understanding, wise, experienced doc, and hubby is willing to drive beyond SoCal if need be to find the right one!

Thank you so very much, and hoping that everyone is feeling more energy day by day!!!

 

[ahmo]

Chia is in Torrance.

integrative doc: http://www.renaahujamd.com

integrative group; Barrett knows MTHFR
http://newportintegrativehealth.com

clinical immunologist,no idea if he knows about Mast Cell
http://www.ucirvinehealth.org/find-a-doctor/g/sudhir-gupta/

La Jolla, POTS
https://www.scripps.org/physicians/5746-thomas-ahern

Dr Charles Bartley at UCI, hyper mobile joints

Dr Aaron banks?

Facebook group California Potsies.

A Dr. Change at UCI. Can't find her first name. Annette or something like that. In Orange.

 

[Mary]

@VFranco - I'm going to tag @Gingergrrl here because she is in SoCal and has had severe problems with MCAS and POTS (or OI? am not sure which) and I think she's found a pretty good doctor, hopefully she will respond here -

 

[Gingergrrl]

My main doc treating me is up in No CAL although I do have a phenomenal MCAS doc in So CAL. If OP sends me a PM, I can give his name (although he is closed to new pts at this time.)

Am seeing a neuromuscular doc next week who was highly recommended for my specific problems to coordinate w/my doc up north but have not met her yet so can't really give an opinion yet.

Sorry this is not more helpful. Have really struggled myself to find good docs in So CAL b/c my problem is so specific.