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MGC.Participant
Dr D… since 45% of folks are Alpha Tryptase deficient, I’m not surprised that ppl are not being diagnosed! I think Mast Cell Diseases will prove to be far more common than they are now thought to be.
Deb… I am not aware of any research into Mast Cells and EDS. However, there has been a good bit done on Mast Cells and tissue remodeling. I expect it will take awhile to learn about all the ways Mast Cells are involved.
MGC.ParticipantHi all… backing up a bit… Dr D… I started with my PCP re my nails. He said he knew something about fungus, but I needed to see a Dermatologist.
Do any of you have problems with liver functioning/ cholesterol? Unfortunately Mast Cell Diseases can have a negative impact on our liver. My Cholesterol is screwed up… low HDL and high Triglycerides. Tryptase breaks down HDL before it can do its job of helping to clear stuff out. And it seems poor liver functioning is implicated in some of these nail problems.
MGC.ParticipantYep, sure do. If I do not keep my fingernails cut short, they are almost flat on the ends. I have vertical ridges on a couple. And the nail on one of my great toes is starting to curl under. I guess I will have to try to see a Dermatologist soon!
MGC.ParticipantSome had problems increasing their Vit D when they were taking D2. Switching to D3 helped.
I think the low D3 and the Mast Cell problems indicate our Immune Sys is out of balance. The Mast Cell mediators can be very inflammatory. The question is why the imbalance?? Hopefully, I will find that answer one of these days. 🙂
MGC.ParticipantHi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
MGC.ParticipantI know that high cholesterol and triglycerides are supposed to be common in EDS…
Is this why?
CONCLUSIONS:
By depleting pre-beta-HDL, mast cell tryptase may impair the initial step of reverse cholesterol transport and will then favor cellular accumulation of cholesterol during atherogenesis.
MGC.ParticipantA feather pillow, with satin case. Cotton sheets.
I love working outside when I can, but have to make use of some stuff when it heats up. Old, soft tee shirts, wet with cold water helps. Frogg Toggs Chilly Pad helps as well.
Gail
MGC.ParticipantI belong to a POTS support group as well. All that have been tested in this group have found their D3 is low. I’m not sure why??
Gail
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