Sorry you have to go through this….my sister was just diagnosed with this diffuse cutaneous systemic sclerosis which I know ver y little about. Keep being a warrior!
I'm glad that you're here to know how it is to live with scleroderma just because your sister has it... Hope you're trying to understand her pain and help her get through it!
Have you tried the AP Protocol? It has helped many with this horrible disease. Henry Scammel wrote a book on the specifics of the antibiotics used in this protocol. Wishing you the best!
@@lillyrocks2011 well apparently in some people it can suppress symptoms reduce skin thickening or inflammation and can help heal the lung or organ scarring or fibrosis. Some group of people on the website inspire swear by it though it hasn't had blind clinical trials. I don't know I took it for 2 months and have another prescription. But currently stopped. Some people claim it takes 7 months to work. I can't honestly say as I havn't got a medical diagnosis. So far my symptoms were the nail hemmorhages, hyponychium overgrowth, I lost pretty much all the subcutaneous fat layer in my body. Circulation is bad, cuts take ages to heal and leave scars where they wouldn't normally. I have some telangiectasia and the damn mouth wrinkles/lines and possible Raynauds as my hands hurt in the cold and go red and take longer to circulate blood. I've seen a rhumatologist and 2 of the people seemed pretty sure I don't have it but the symptoms have no other explanation. I have 2 more tests to do, a capillaroscopy and skin biopsy then il know for sure I think. If I have it I want to try the blood treatment. I watched a video and read about therapeutic plasma exchange where they basically put you on a machine where your blood goes out one arm like a blood test and have you on a drip on the other arm. It filters the blood and puts it back. Apparently it can suppress the symptoms if you continue the treatment. Il know eventually after I have my tests.
Sorry you have to go through this….my sister was just diagnosed with this diffuse cutaneous systemic sclerosis which I know ver y little about. Keep being a warrior!
I'm glad that you're here to know how it is to live with scleroderma just because your sister has it... Hope you're trying to understand her pain and help her get through it!
I wish her healing
Have you tried the AP Protocol? It has helped many with this horrible disease. Henry Scammel wrote a book on the specifics of the antibiotics used in this protocol. Wishing you the best!
I don't like the word scam being present in that name.. as I'm skeptical of this miracle fixes but I got hold of minocycline regardless
@@lillyrocks2011 well apparently in some people it can suppress symptoms reduce skin thickening or inflammation and can help heal the lung or organ scarring or fibrosis. Some group of people on the website inspire swear by it though it hasn't had blind clinical trials.
I don't know I took it for 2 months and have another prescription. But currently stopped. Some people claim it takes 7 months to work.
I can't honestly say as I havn't got a medical diagnosis. So far my symptoms were the nail hemmorhages, hyponychium overgrowth, I lost pretty much all the subcutaneous fat layer in my body. Circulation is bad, cuts take ages to heal and leave scars where they wouldn't normally. I have some telangiectasia and the damn mouth wrinkles/lines and possible Raynauds as my hands hurt in the cold and go red and take longer to circulate blood. I've seen a rhumatologist and 2 of the people seemed pretty sure I don't have it but the symptoms have no other explanation. I have 2 more tests to do, a capillaroscopy and skin biopsy then il know for sure I think.
If I have it I want to try the blood treatment. I watched a video and read about therapeutic plasma exchange where they basically put you on a machine where your blood goes out one arm like a blood test and have you on a drip on the other arm. It filters the blood and puts it back. Apparently it can suppress the symptoms if you continue the treatment. Il know eventually after I have my tests.
Hi Lynn hope you are doing well still
What is the facebook account