Can anyone tell me if they have been successful in eradicating CPN & how long it was?

Was wondering how difficult a treatment protocol is?  I have CFIDS/ME & FMS, Hemochromatosis, IBS & tested positive last year for CPN.  Thanks

Not too long, too long, not difficult, too difficult....Depends on the day and your own realization of your future. For me the first 2 1/2 years were the hardest. Being PPMS and heading very fast to the big black hole, it was an easy choice. Do it and do it well or lose everything - body and mind. There were some very bad times that lasted and lasted but eventually I hit bottom with a squishy plop and began the long adventurous reversal. Like you, I had zero energy and not much more mobility than that. Today I can do more in an hour than I could in a week 2 years ago. If you decide to do this, welcome. I think you won't have to look far for education and entertainment.

 

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 41 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

The treatment experience is different for everyone, so telling you I've had little to no side effects doesn't mean you will have the same results. But I don't understand. If you have cpn and if you mean to be treated, what's the difference? I was willing to go through hell and back if it meant I came out of it cured. However difficult it may or may not be, there's no way out of this but to bite the bullet and take your medicine.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Not easy, not quick, but certainly the only way out of debilitating illness for most of us. It is difficult to be absolutely sure that Cpn has been eradicated which is why the people who are better continue to follow intermittent treatment.

Everyone's experience is different, much depends on where Cpn has settled in your body. I have neither MS nor CFS so my experience would be different to yours. The most spectacular aspect of my recovery is the growth of my hair, from being very nearly bald to a full of hair, but that aspect of my treatment was more of less painless. Other aspects of the treatment have caused me more pain and discomfort, especially in my tummy and legs. I'm a long way from being better, but there is progress.

Michele: Wheldon CAP1st May 2006 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

 Ruthless- As they say, it depends...

The difficulty of it (die off reactions, inflammation, porphyria) depend on your overall bacterial load, what organs are infected, how many systems are haywire, how long you've been infected, etc.  Same with length of treatment. The key is that you ramp it up gradually as you tolerate it. Most of us have some rough periods, especially when we try to push the treatment faster than we can tolerate. Are you as impatient as I am? 

Maybe a better question is not "how long until it's gone?", but "do you feel better in the course of treatment?" To that I'd say yes, you will feel better as you knock down the Cpn load some, and increasingly better as that happens. I'm probably one of the more challenging cases: had it for a long, long time and with lot's of tissue load. First couple months were misreable for me, then gradually noticed less and less inflammation and pain, then noticeable immune system improvements. Fatigue has been slower to abate for me, but is improving on continuous protocol. 

Others have had initial improvements in fatigue and concentration, etc, etc, in all the variations. A few have had little initial reaction, just improvement.

I have to say, as a CFS/FM sufferer for many years, having tried many treatments and therapies, some of which helped but I was going down hill over time none-the-less, it was the severity of my initial reactions to the doxy that convinced me that my disease was due to Cpn. So strong reactions to starting the CAP, while really unpleasant, give credence to infection as the problem.

And if you have Cpn, as you've said, really what is the alternative? Without treatment you just get worse and worse. With incorrect treatment (a course of single antibiotic) you feel initially better, and then it springs back worse when you stop.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Flagyl daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Ruth, it took me about a year, but then, apart from having MS, which in the end affected me very badly, I was always quite healthy, ate good, organic food and started supplementing with vitamin D before I began abx.......Sarah   An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.