Connect the Dots

I am trying to connect the dots, and was wondering if I could get an opinion from some of you who have been here a while, and know more about CPni.  Several years ago, and I can pinpoint it to within a couple of months, I began feeling "not right".  I was first dxi with pernicious anemia after complaining of brain fog and fatigue, then irritable bowel syndrome for chronic unrremitting diarrhea.  These were followed by numbness in two toes, which the neuroi determined was caused by diabetic nueropathy (after three glucose tests, one came up a little off, and he dx'd glucose intolerance).  I beleive I have glucose intolerance, but diabetic nueropathy from it?  Anyway, after that, psoriasis, which I had had problems with for years without knowing what it was, followed a couple of years later by psoriatic arthritis, which is very similar to rheumatoid in its presentation, but does not seem to require an elevated rheumatoid factor, and has more frequent episodes of remission / activity.  After that, I was dx'd with "female problems": adenomyosis and fibroidsi, resulting in a hysterectomy, for which I am thankful!  Now, I am having trouble with increasingly frequent fasciculationsi, and after yet another round of bloodwork  that is "fine", I'm being referred back to a neuro.  I know this is pretty abbreviated, and there are myriad other things I could add that have changed in that time, but can anyone give me an idea if its worth my time to look at CPn, or if they've heard of another agent that might cause many symptoms to appear years apart?  I seem to find very little relief from the drugs they have given me to combat these, and have always felt that everything is connected, since it started fairly abruptly and continues to deteriorate.  Any suggestions / avenues to pursue would be helpful.

Welcome Bethae!
My story includes seronegative arthritis, asthma, MSi with an EDSSi of about 5.5, female issues as yours but no hysto yet, and I started CPn treatment with an MD who usually uses the Marshall Protocol (another abxi approach) about three months ago though I use the Wheldon/Stratton. I have not taken flagyl yet. So far I have noticed some mildly improved walking after working out, some small increases in energy, some reduction in female issues, and some definite reaction to NACi in particular indicating possibly CPn in EBi form. Read the basics page to start with to begin to see what we are dealing with.

It sounds like these issues you are dealing with might possibly be related to CPn. You might try the treatment if you have no help otherwise, but if I were you I'd get a doctor on board with me and make sure I understood what it was I was addressing before going ahead with it. In other words, see if you test positive for it then talk about treating empirically if you have symptoms that seem to be related to known CPn issues. It is an unproven approach, though there is a lot of research showing CPn is a troublesome pathogen for people and that it is devilishly hard to eradicate from the system. My Asthmai Story is a good site showing how one person was helped by treatment since it was the right problem to address.
I hope you have good luck with this
Blessings
Marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

[quote=bethae3]heard of another agent that might cause many symptoms to appear years apart?  Any suggestions / avenues to pursue would be helpful.[/quote]

Marie,

Thanks for the support.  I have doubts as to whether CPni could be the culprit for me - an awful lot of what people are going through is missing from my "story".  It may be worth testing to find out, though. I have a great family doc who listens well and will work with me.  My question (above) comes out of concern that if I request too many tests, the doctor may eventually stop listening, so I want to try and pinpoint any "most likely" culprits before I ask. Have you (or anyone) heard of anything else I should be looking into?

Thanks.

Bethae- From my read Cpni is one of the more likely candidates. All your symptoms are common in Cpn related diseasesi: anemia (they consume iron), arthritusi, fibroidsifasciculationsi, neuropathy, etc. Other culprits are Lyme's, Mycoplasm p.. The trouble with testing is that a positive test will give you reason to treat, but false negatives abound. So if you get your doc to run tests and they come back negative, he or she will most likely feel less inclined to treat you empirically unless they understand ahead of time (see the Physicians section) why this might be a problem.

On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

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