Antimalarials/ Misc. Questions- Please help Dr. Sy

[Guest guest]

Hi Everyone,

I hope you are all doing well and have a very happy and healthy new

year!!

I am getting pretty desperate (hence yesterday's idea to write the Pres)

to get my life back. My severe burning pain, throbbing and swelling

continue to worsen. My lab tests for porphyria have again been lost,

etc., etc. Anyway, I though I'd ask a few questions of this wonderful

group and our dedicated Dr. Sy. I just don't know what to do, and any

suggestins would be greatly appreciated.

1) Red hot, burning facial skin around the clock- Is there ANYTHING

medically to stop or counteract this constant searing hot facial skin?

(I have the house at 65, I eat sorbet and ice chips, I moisturize. I

rinse with cool water, but the relief only lasts while I'm splashing the

water on. I've tried antibiotics, topicals, antihistamines,

antidepressants, beta blockers, histamine blockers, antiinflammatories,

depo madrel injection, etc. Doctors have told me repeatedly that

accutane and photoderm won't help. They even said ETS was not for me.

Now I have to go to USF for a biopsy next Friday, even though almost all

tests have been normal. [One borderline ANA 1:80, but doctors no longer

fel it is autoimmune / Positive or HLA-B27/ IgE of 858/ High

uroporphyrin levels in one test.]

2) Antimalarials- Have they helped anyone with their burning pain and

swelling?

3) Any new ways to stop leaking lymph, cytokines, prostaglandins, etc.?

4) Bad Photosensitivity- This definitely means you can't have photoderm?

5) Porphyria- Can you have photoderm with porphyria?

6) MVPS- Has anyone discovered that they have dysautonomia/ mitral valve

prolapse syndrome?

7) Rhinophyma- Has anyone been able to stop this from progressing?

8) Candida- Anyone told that there is a link between Candida and

rosacea?

9) Underlying Cause- Has anyone learned the underlying cause that is

makng the rosacea so bad? Autonomic dysfunction, thermoregulatory dysf.,

hyperactive sympathetic nervous system, etc. have been mentioned as

possibilities. Does anyone have a doctor who is investigating these

possibilities? What kind(s) of doctor(s) would look into this?

Sorry to have gone on and on, as usual.

Thank goodness I have you all. Thank you.

Happy 2000!

Love,

Lee