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#517082 05/09/17 05:39 PM
Joined: Feb 2016
Posts: 98
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Obviously, all you know my symptoms and I have the classic AS symptoms, stiff spine and muscle pain but now I have develop something I have never had previously " Buttock SI joint Pain".

Current rehumy says Enbrel. Last Rehum saw said muscle issue, not sure what to do and i'm really scare of Enbrel after what happen to me with Humira.

Is it worth seeing another Rehum? I don't know what difference they would make?


The pain in spine moves around. Sometimes it's in the mid back , sometimes upper back and now buttock.


Am I still under delusional that some magic Antibiotics will fix me up?

Just care of TNF blockers from past experience.

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Hello, worldofme:

Quote:
Am I still under delusional that some magic Antibiotics will fix me up?


Have antibiotics ever fixed You up?

That would not be the most prominent delusion. That AS can be treated by pills and injections--that is the most serious delusion we face.

Find a physician who will try LDN for You--but whatever eventually works for You might not address the underlying cause(s) of Your disease.

HEALTH,
John

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No abx didn't really work. I try LDN in the past but exp tachycardia so doc stopped.

how do you treat the root cause of it if they can't find the cause?

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Hello, worldofme:

Quote:
how do you treat the root cause of it if they can't find the cause?


That is a good question, but only a part of it; they find the cause routinely but never recognize it!

I had forgotten Your experiences with LDN and thought ABX (Flagyl) had been helping at one time.

If You are experiencing flares and then periods of lower activity, perhaps You would consider chelation. I went to a fellow in San Leandro many years ago and got me out of a particularly severe episode after about three treatments.

HEALTH,
John

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Originally Posted By worldofme


how do you treat the root cause of it if they can't find the cause?


Well they don't actually treat the cause as they don't know what the cause is so all they can do is treat the symptoms. A.S. is an incurable chronic disease.

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Originally Posted By Frederick
Originally Posted By worldofme


how do you treat the root cause of it if they can't find the cause?


Well they don't actually treat the cause as they don't know what the cause is so all they can do is treat the symptoms. A.S. is an incurable chronic disease.


I think the evidence is pretty staggering that the root cause is infection, usually Klebsiella. Even my rheum doc believes that, although he is not inclined to treat people for it unless they ask and can sort of prove that antibiotics have helped.

My AS was under control until the klebsiella spread, or multiplied or became resistant or whatever. Add in a secondary infection and I was almost back to square one.

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JaxTee: Your right it's infection and I agree. But the problem is I have try many abx and flagyl at point did help but not any longer.

I'm trying to this new ABx call Fosfo which seems to cause this flare but who knows why if this is good or bad thing.

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Originally Posted By worldofme
JaxTee: Your right it's infection and I agree. But the problem is I have try many abx and flagyl at point did help but not any longer.

I'm trying to this new ABx call Fosfo which seems to cause this flare but who knows why if this is good or bad thing.



I know the feeling, depressing isn't it?

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It's like doc don't communicate and fail to understand patient as a whole. Every specialist wants to treat his part and that's it.

Sometimes telling a doc your seen a specialist is kiss of desth.


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