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I have Lupus sarcoidosis and a stomach tube and I am starving to death. I started osmolite 1.5 and it literally felt like cement moving through my body. I suffered serious lupus flares trying to make it work for 6 months and had to stop. I found liquid hope a real food formula and I have no doctor that will prescribe it because it is not chemical or pharmaceutical you made. meanwhile my gastric surgeon who monitored all of my health and nutrition just up and left I need a new doctor I can trust… read more

March 30, 2016
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A MyLupusTeam Member

Look up a company called ProSource in Lancaster PA. They deal with high protein medical grade liquid and gelatin supplements. I’ve used them for my lupus and surgical wound healing.

January 12, 2018
A MyLupusTeam Member

@Charnel Baker, Hi Charnel, I just read your post about your feeding tube. Bear with me as I have a few questions for you. I, too just had a feeding tube paced and use the same formula (the Osmolite 1.5) I have Scleroderma in addition to my Lupus and I have an immobile esophagus which means, anything I eat gets stuck and won't go down. I'm sorry you are having so much trouble. I've had mine for a couple of weeks and I absolutely hate it. I have severe diarrhea and it makes me so weak i can barely stand up. I was wondering if you experienced anything like this and if so, how you handled it. I'm at my wits end and I'm about to tell them to take it out. It's more than I can handle. No one explained all of this to me, they actually made it sound like it was a piece of cake. I really don't know what to do. I wish I could recommend a good doctor to you but I live in Michigan. I hope you find some relief soon! Can you eat anything by mouth? Before I got this tube I literally loved on Boost, Ensures and yogurt. They told me I could continue to eat with the tube in place. Can you also do this? What is liquid hope? I have never heard of this. Does it work for you? Isn't it just amazing the hoops we have to go thru when it comes to doctors and prescriptions? It's ridiculous!!! Hugs to you my friend, I hope things get better soon! Thanks for listening, I really appreciate it!! 💟💟💟

November 28, 2017
A MyLupusTeam Member

I live in harnett county north Carolina, i used to be seen at duke for the lupus and sarcoidosis and I used to be seen at ECU brody school of Medicine for my stomach and I still go there for pain clinic.

April 12, 2016
A MyLupusTeam Member

So sorry to hear about your struggles. You don't say where you live so it is kind of difficult to recommend a doctor. I would contact the nearest large medical/research university. Check out Cleveland Clinic, Mayo Clinic, Johns Hopkins. to start.

April 8, 2016

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Detroit, MI