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L2Gilbert joined the group Scleroderma Advocate Network
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Ruthana posted an update in the group Scleroderma Advocate Network
My sister was recently diagnosed and she’s currently struggling with low hemoglobin and chronic vomiting, she just had a procedure (cauterize) of a small laceration of the small intestine and hernia of esophagus- procedure was done 6 days ago and she continues vomiting. Does anyone experience this?
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Hello Ruthana I am very sorry to hear about your sister and the trouble she is having! These symptoms are not uncommon in Scleroderma patients but the surgeon should be following her closely and managing these symptoms. Can I ask where your sister is located? Different states have different laws with regard to plant based natural medications…[Read more]
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Hello Eric, thank you for replying to my post. My sister is located in Los Angeles, Ca what natural medication could be helpful in relieving her symptoms??
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One option that may give her relief is medical cannabis. In California, Cannabis based medications are legal, and we actually work with a group of licensed pharmacists who provide free consultations to patients. I don’t know if they can service Los Angeles area, but they can definitely consult her on her options. Their information is available…[Read more]
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It can definitely help with the nausea and vomiting!
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Ruthana joined the group Scleroderma Advocate Network
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Daniel Christian Patient Advocate joined the group Scleroderma Advocate Network
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Daniel Christian Patient Advocate joined the group Scleroderma Advocate Network
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Jackie joined the group Scleroderma Advocate Network
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Brad West ND posted an update in the group Scleroderma Advocate Network
Two other ideas would be to check heavy-metal toxicity and for mycoplasma.
I would seriously investigate heavy metal toxicity.And Check out the New Arthritis
Breakthrough (old book actually) but has some case notes on scleroderma
remissions in there. -
Brad West ND posted an update in the group Scleroderma Advocate Network
Scleroderma is looking more and more like the classic picture of autoimmune disease triggered by gut biome problems.
https://www.ncbi.nlm.nih.gov/pubmed/28719392 https://www.ncbi.nlm.nih.gov/pubmed/28719392
https://www.ncbi.nlm.nih.gov/pubmed/26749064 https://www.ncbi.nlm.nih.gov/pubmed/26749064
Though there may be some debate remaining…[Read more]
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Thank you Dr West for the insightful posts! Very much appreciate your time!!
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Brad West ND joined the group Scleroderma Advocate Network
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Eric Drew posted an update in the group Scleroderma Advocate Network
This seems to be the most promising therapy we have found, but we are continuing to search for you. “Intravenous Iloprost is effective in the treatment of Raynaud’s phenomenon secondary to scleroderma at decreasing the frequency and severity of attacks and preventing or healing digital ulcers. The effect seems to be prolonged after the…[Read more]
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Eric Drew posted an update in the group Scleroderma Advocate Network
Hello Trinh, the following posts may be valuable for your doctor in Vietnam. Can you ask him to join us here in this community so he will have access to the information posted here? The medication “Prozosin” listed below is one of many we are looking at. It has modest benefit but can cause serious side effects. We will post information on…[Read more]
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Eric Drew posted an update in the group Scleroderma Advocate Network
Scleroderma – Treatment – Mayo Clinichttp://www.mayoclinic.org/diseases-conditions/scleroderma/diagnosis-treatment/treatment/txc-20206070Find out why Mayo Clinic is the right place for your health care. Make an appointment.. -
Eric Drew posted an update in the group Scleroderma Advocate Network
Scleroderma – Treatment – Mayo Clinichttp://www.mayoclinic.org/diseases-conditions/scleroderma/diagnosis-treatment/treatment/txc-20206070Find out why Mayo Clinic is the right place for your health care. Make an appointment.. -
Eric Drew posted an update in the group Scleroderma Advocate Network
Limited scleroderma – Treatment – Mayo ClinicFind out why Mayo Clinic is the right place for your health care. Make an appointment.. -
Eric Drew posted an update in the group Scleroderma Advocate Network
Hello Trinh I found this link about self management of Scleroderma which I thought was valuable. Jackie can of course help translate this if you need her to. I am having conversations with several doctors and experts. I hope to have more information for you in the next couple of days.
Scleroderma – Self-management -… -
trinh nguyen joined the group Scleroderma Advocate Network
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Jackie replied
Hello Trinh I am here in this community with you. I can help translate all this information for you. Please confirm that you see this msg???-
Hi Chi Trinh !
Em đang ở đây trong cộng đồng này với chị ,em có thể giúp dịch tất cả thông tin này cho chị, Xin vui lòng cho em biết chị nhìn thấy msg ???
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Ericdrew18 joined the group Scleroderma Advocate Network
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Eric Drew joined the group Scleroderma Advocate Network
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Weheal Contributor created the group Scleroderma Advocate Network
