My GI decided with all my surgeries to test me. To say it didn’t go welll was an understatement. I called for results and the woman said my baseline was 30 and by the end i was literally off the chart. But still the ins company wants a snail mail Petition for their denial . SO I wait for care . Well, i also, had lowered my prednisone.to 5 from 5.5 and felt good with decision until now, 3am , and knee, hip and wrist (my pain points) are aggravated. I sweat out the horrible headache and such of lowering last week, so this surprised me. I can only guess i hit an episode. Any suggestions for SIBO and suggestions on curtailing lowering would be helpful. My dilaudid has kicked in for stomach, but unfortunately doesn’t effect PMR pain. Pls excuse any typos i can’t find my glasses as i type in the dark lol. ( i feel like a country song because in addition to all that my dog has cancer in leg so. Must decide on removal 😢 and just found out my kids father has stage 4 cancer, more googling)
Love and peace - rejoice and enjoy each day my PMR friends
Written by
klairv0yant
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I am truly sorry that you are going through a very tough time at the moment. I know nothing much about SIBO there maybe a group of sufferers that you can tap into. I admire the way that you are being upbeat and hope that the clouds part for you soon. I had to smile at your Country song joke - sounds more like the blues to me.
Has the doctor not suggested trying high dose probiotics in the meantime - it is one of the approaches. I ask because here in Europe it would probably not be covered anyway, certainly isn't on the NHS in the UK. But you can get good probiotics OTC. My friend with a history of GCA probably developed something similar after gall bladder surgery - and the gastro suggested VSL#3. It isn't cheap but it worked wonders.
Presently on probiotics, Vit I’ve extended my research and have ordered herb oils . Further research of dose and interference is being done on my end . Trying to tap all resources so i don’t screw up my system further.
i have just been diagnosed with SIBO after a breath test. I felt dreadful after the test for a couple of days, I suspect because of the 48 hour diet before and the lactulose I had to drink just before doing it. I have started a diet and started taking just one drop of Oregano Oil as recommended as the herbal alternative to antibiotics. I now feel really ill, my stomach is dreadfully uncomfortable all over, noisy and I am so fatigued.
I am on 7 mg Pred after 3.5 years with PMR. I have been reading up as much as I can about SIBO on the internet, so I now know a lot more than my Gastroenterologist. Which isnt difficult really, as he knows very little about it. I am not going to try to reduce again until I have sorted this SIBO out as it is apparently very difficult to get rid of. The diets for it are very strict which causes problems in itself.
Are you in the UK ? I only just found your post, so hope that you get this message. I am sorry you have SIBO but it will be good to have a chat with you about it. Do get in touch.
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