Hi everybody! A long time lurker saying hello.
I have read on and off on this website, but never got around so far to create an account and participate.
I am on a protocol for cpni for about one year now. With doctors consent? hardly, but they at least admit that it helps me in some way.
My main symptoms are fibromyalgiai + pain in the right knee, or rather, the sensation like the leg is "somehow not there". Fogged thinking, trailing of the right eye on eye movements and pain when turning the head are (were) also present.
I have got something urgent to ask:
My Doctors want me to take break from the protocol.
My rheumatologist suspects that bacteria are involved. He does not believe that cpn are the problem, but suspects something like Whipple's disease or general small intestinal bacterial overgrowth.
I am scheduled for an Endoscopy to find out what kind of bacteria I have in my gut. Therefore my doctors want me to take a break from the protocol. It would be for 7 days.
I am not sure what I should do. Since I am doing the protocol on my own (though I managed to get the doctors to prescribe part of the antibiotics because of my rheumatologists suspicion that bacteria are implicated) and especially since all input from the doctors is rather against me taking antibiotics, I do not expect a proper risk / benefit assesment from them.
I have been looking around on the cpnhelp.org website to find some pointers about stopping the protocol, but I would still like to hear opinions or, better yet, experiences from people who stopped for a brief time.
A further question is: Is it necessary at all to stop? I am not too knowledgeable about dianostic methods in medcine, but would a specimen taken from my small intestine still be useable if I kept on taking abxi?
Does the endoscopy actually help in some way? Would they find what is causing me trouble? Will they be looking for cpn? (I told them to look for it, but ...)
I had a look at this thread so far: http://www.cpnhelp.org/mri_stable_with_one_lesio#comment-21042
Oh and thaks alot to everybody on this web site, especially the creators. I don't know where I would be without the information available here.
I shall write up my story sometime. When I find the time.
Thanks,
jan
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Jan- people have paused on
Jan- people have paused on the protocolsi for various reasons including upcoming medical tests, liver enzymes elevated, just getting overly toxic with porphyrins or endotoxinsi, etc.. 7 days is not a problem, and you can continue on NACi without worry as it doesn't effect any other bacteria. Yes, you have to stop the antibioticsi if you are to get a valid test of intestinal bacteria. Are they doing a stool culture for this? The endoscopy is looking more for abnormal tissue or inflammationi, and you clean out your system to get this, so no stool culture possible at that point!
Since you've not reported before, and don't have signature with your info yet (my account/edit then fill in the signature box), I'm assuming that "one year" means at least some pulses, yes? From your symptoms "pain in the right knee, or rather, the sensation like the leg is "somehow not there". Fogged thinking, trailing of the right eye on eye movements and pain when turning the head are (were) also present..." I would also be concerned about porphyrin build up, as they are highly neurotoxic and can cause all sorts of odd neurological and cognitive responses. Are you doing the moppers?
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Hi Jan... welcome... I have
Hi Jan... welcome... I have had to briefly stop ABXi a couple of times so I could be tested. I had an endoscopy as well as colonoscopy. They did discover an area of "infection" in the splenic flexure area (it was not biopsied)
I also developed severe arthritis after about 8 months on the protocol and my doc and I conclude it most likely is the CPNi as it can go into the synovial fluid of the joints but it is debatable according to the experts. In my case I never had any problems until I started the ABXi. The good news is it is getting better the longer I am on the protocol and pulsing.
You might want to read this article from pubmed. Be sure you read down far enough to "C. pneumoniae and arthritis".
My experience has been that most of the doctors I have had to interact with (in the hospital/emergency environment), know very little about the damage that cpn bacteria can do to a body and therefore highly questioned my being on long-term ABX as well, (but all of us here know better!)
Keep us posted :)
JeanneRoz
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupHi Jan, I also stopped for
Hi Jan, I also stopped for 2 weeks but continued NACi. I felt good for the first week but then the same old symptoms started again. I was only a few months on CAPi then.
Good luck
Daniela
CPni, monotherapy Feb - April, since then on full Wheldon protocol. Only the most necessary supplementsi.
Hi Jan, It's OK to stop for
Hi Jan, It's OK to stop for a short while. Not sure what endoscopy will show up maybe the think you might have a polyp or something like that. They are unlikely to be able to tell if you have a bacterial infection by doing an endoscopy. As Jim says a stool sample might be more productive...
It will be interesting to hear what happens...
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006