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hjbearclaw posted:
I have had FSGS since 1998 recently it has progressed to stage 4 it was stable and I was considered in remission for the past 3 years I did not go to the doctors for 3 years so I don't know at what point it went to stage 4. I have tried many herbal therapies and accupuncture, I started taking blood pressure meds again, I have no support at home no one understands what I am going through my partner thinks it is all in my head. I have been drinking cornsilk tea and eating a no carb, no fat diet which seems to help a lot, fasting and praying helps too as well as doing sweats. I just can't accept that there is nothing I can do about this but wait for my kidneys to fail and get a transplant. I don't have insurance and the doctors are not telling me everything, I have to get copies of my lab results to consult with someone about it that doesn't cost me 200 dollars a visit. I have been looking for a support group so I don't feel so alone I know others are going through the same things I am. Itching, tired, sleep for days and other days don't sleep at all, anxious, vit D is depleted, uric acid is really high, losing a lot of protein, cholesterol stays high, blood pressure stays high with out meds, hard to lose weight, and the pain in my body varies daily, sometimes I can't move because of gout and other days I feel great, can't play soccer any more, but I have to do some kind of exercise. I just want to find a cure!!! Going on a kidney cleanse with cornsilk, turmeric, parsley, artichoke, and cherry, amoung other stuff fresh carrot/beet juice and good water and good tea and consume no grains/sugars and eat lots of fresh vegies and certain fruits. The dysbiosis diet has been working very well too from my accupuncturist. Thanks for listening.
jpclark responded:
hjbearclaw, Hi I have FSGS too, found out about this time in 2010. It has been a battle for sure but their is hope. I am doing really well now due to some great doctors and a very determined, diligent husband. I am more than happy to share
the names of the medication that I am on and the vitamins that
I take to help with the fatigue and other symptoms.
hjbearclaw replied to jpclark's response:
hi jpclark thanks for the response I am looking for someone to talk to that understands my situation, I would be interested in exchanging stories with you as a support kind of thing not sure if we can post our emails on here but I would be willing to contact you if you leave me your email or vice versa. I want to be able to email you on a regular basis if you want to be my pen pal.hjbearclaw
parvathy123 responded:
please eat only gluten free food it will surly cure you
parvathy123 replied to jpclark's response:
Also try to avoid gluten free foods

Spotlight: Member Stories

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