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Ruthana joined the group Scleroderma Advocate Network
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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 which could be very helpful in relieving her symptoms.
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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 here https://services.weheal.org/medone/
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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 as the disease is often associated with gut motility problems, which in itself could cause biome derangements.
And a professor , An ND, told me a few years ago to combine ashwagndha ( Withania
somnifera) with gotu kola for auto-immune disorders. I usually dispense
this as a 1:1 mix of tinctures, and I like to add a small amount of a 6C low
potency homeopathic remedy as a “kicker” eg Croton tiglium, graphites,
silicea, or bryonia.I think of alpha lipoic acid and curcumin as anti-fibrotics, and would use
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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 intravenous infusion is given.”
Iloprost and cisaprost for Raynaud's phenomenon in progressive systemic sclerosis – National Library of Medicine – PubMed HealthScleroderma is a connective tissue disease causing fibrosis and commonly affects the skin and internal organs such as the GI tract, lungs, kidney and heart.