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Mikana:
So good to “see” another old friend here. Yes we could not be prouder of Jess but not really because of her achievements in the face of her adversity all those years ago, SD was just a small blip on her radar at this point. She’s a good person too. She doesn’t have any remaining issues. Maybe a touch of Raynauds if she is in the freezing cold. She has recovered and gone on to do anything and everything a young person might have wanted. She has traveled all over the world, Thailand, Africa (2x to work), Europe, South America, etc. She swam in college and even won an NCAA championship, and she ran (and finished) the LA Marathon. Considering she had about 60% DLCO with SD I’d say that’s a full recovery! We couldn’t be more grateful. She still swims a runs now, and puts in about 10 miles a day walking during work.
Cheryl
So, How do i tell how far along i am with the SD? Joint pains for several years taking meloxicam. last year my hands started swelling and the fingers would go numb, calcium channel blocker for swelling and high BP. Finger ulcer, topical antibiotic. Also, some digestion difficulties, weigh loss. Havent started the IV treatment yet. What should I be taking while I wait till they start the IV treatments. The VA docs think it is a bogus treatment and I am seeing a Doctor in this area for the IV treatment, after all the test are in. There were no mycoplasms found in the lab test.
Dont want to postpone anything I can start now. How did others find out and how long till they started the AP IV.April:
The first rheumatologist who diagnosed my daughter told me that this treatment “was a hoax” and that he would “have nothing to do with it!”
Also, mycoplasma is very difficult to grow in culture so thevtests are not 100%. Doctors need to test clinically. However, unfortunately, most doctors don’t believe the clinical symptoms of Scleroderma are clinically indicative of an infection, so, it iscreally up to you. If you decide that you think the infection therory makes sense to you, then you probably are best to get a doctor that sees things this way. The VA doctors probably won’t ever see this treatment as valid. It is just going to be up to you to decide.
Best~
Cheryl
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