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Joined: Mar 2009
Posts: 216
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Second_Degree_AS_Kicker
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done many gut biome tests over the years. Remain unconvinced of link. Just another variable to add to variables. Spike in Kleb seems to make no difference to what diet I am on. Recently did a study with Imperial College where they looked at what you ate as well as your partner and will analyse stool sample to see if there is any noticeable difference. Bacteria are to unknown at the moment. Best bet is to check out new biologics if you can get hold of them. Currently on secukinumab IL17A inhibitor. slow start but good. Will watch this space for JAK inhibitor, hopefully full market by 2025.

Joined: Sep 2001
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AS Czar
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Hello, mooman:

Have You dropped all medication to eliminate variables in perception? Also, the ultimate elimination diet is of course fasting. I recommend what has worked for me and opened my eyes--and longest I fasted was 20 days and it would have made no difference between day 19 and day 21, I'm certain; no AS symptoms.

I know that antibiotics that reduce levels of Klebsiella pneumoniae reduce AS symptoms and antibiotics that have no effect upon this germ absolutely do not reduce symptoms. It takes 4 days to determine this, so our timelines are pertinent and event horizons extend well into the future!

After a couple of cycles of bactericidal (to Kp) treatment, a strict NSD worked with no antibiotic or NSAID, herb, etc; only aggressive supplementation especially vitD, vitC, lysine, vitE, and niacinamide.

It is good to experiment, to some extent, but we cannot hold ourselves to the rigorous standards that true scientific studies demand: I eventually made the choice to combine diet with antibiotics because I proved to myself each worked separately and the synergism was nothing short of astounding!

We each have to find our own way and make the diet work for the combination we have of first AS, then allergies, fungi, protista, and unique circumstance.

HEALTH,
John

Joined: Oct 2019
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mslater Offline OP
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mooman- I do share your frustration with the biome testing. The bacteria themselves are very poorly understood, and the interactions with each other/genetics/foods create exponential variables. Add to that the fact that the bacteria detected in your stool may not accurately represent the ones thriving and colonizing your digestive tract, at least at that moment.

Shortly after I wrote my first post in this thread I became very ill with colitis. Within 3 days AS symptoms pain went from 2/10 to 10/10- could not sleep for more than 45 min at a time for 2 weeks straight. This is the first time it has happened to me in my life. My Dr. ran a traditional stool sample analysis for pathogens and it came back positive for C diff and Ecoli 0157. I completed 10 days of Vancomycin, and I can confirm that AS symptoms did not improve on that antibiotic, in fact they became worse if anything. If AS is caused by a pathogen, this is further support that it is a gram negative/virus/ or fungal species (Vancomycin targets mainly gram-positives). E coli, Klebsiella, etc are gram negative.

Prior to the antibiotics, but after infection and flare I took a Viome sample and I received the results back today. It is designed to only track the bacteria actively expressing genes (doing things!). It did identify E.coli, C.diff, and Klebsiella, none of which showed on my prior Thryve report.

DragonSlayer I agree that the fasting is evidence that there is a strong link between dietary triggers. This does seem promising: https://www.ncbi.nlm.nih.gov/pubmed/30886835 After hellish C. diff infection I would be apprehensive to try some antibiotics at this point- I am going to attempt more probiotic methods. That said there are no risk free options for us so I think we all need to make our own risk assessments.

mooman- Biologics have helped me as well, obviously risks with these too. Interestingly there is a correlation with gut biome and biologic use: https://www.clinicaladvisor.com/home/top...-bowel-disease/

It feels like we are searching for something in a dark room at this point. I hope that we make more progress this decade. Let's keep all possibilities on the table.

Joined: Mar 2012
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Journeyman_AS_Kicker
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mslater : Grateful if you will please let us know the effects of the fasting diet you started on 22nd January 2020 ? At that time, I think you said inflammation was going down. ANy further luck with the diet ?


Age 56. Psoriatic spondylitis. HLA B27 negative. MRI negative.
Joined: Jul 2010
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Steel_AS_Kicker
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Hi ,
I have tried so many things like you for my RA, I used to have low pain in si joints all day all night, but elimintaing grains and a hysterectomy eradicated it I think. My swelling is in knees, wrists, shoulders and fingers. I tried raw vegan for 5 months but I was eating ALOT of fat each day, like 80 grams . But if I eat only lettuce, cucumber, celery I have no pain, however it is challenging to only eat those three things. I also used Viome to test my gut, but my results were a little disappointing since it said I could eat rice, dairy,beef and I know I cannot, I am so sensitive to food I feel pain within an hour of eating an offending food.
So for me, what I am happy about is finding a solution about reducing my pain and swelling by eating raw, vegan and LOWFAt.
I use cronometer.com to add what I eat to see if I meet my nutritional needs , it shows you what minerals and vitamins you still need after typing in all the food you eat each day.
I cannot eat bananas, citrus, tomatoes.
I hope you are doing well.
ps If I take any antibiotics it puts me in a awful flare...dont know if it is same for you?

Last edited by ValsMum; 03/29/20 04:57 PM.

Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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