Cpnhelp.org

Norman, thanks for your story, it is going to help me and Ella schedule the introduction of metronidazole when the time comes.   It is also interesting to note the sequence of events of your recovery.

Michele: Spokesperson for Ella on Wheldon protocol since 17th March 2006

from Sussex, UK

Norman, thanks for sharing your story[thus far].  It has some similarities to mine, however when I got a bulls-eye rash, nobody saw it but me, and it was over a yr later that my neuro based his ms dx on my neg lyme elisa test.  My spinal tap also revealed no oligoclonal bands, but he still called it a "flaming" mri--inflammation I guess.  At the time it seemed like a tacky way to tell me I had ms.

The treatments you have rec'd over time have obviously been to your benefit.  As I read your story of your doctors prescribing Doxy, then being open to adding Azith., I was thinking...if only..if only--

If only we all could be treated empirically, under a doctor's care without having to order meds from overseas.  Your future looks very bright.

"What saves a man is to take a step.  Then another step"

-C.S. Lewis

     Great story, Norman. Lucky you started the antibiotics so early. Not many people can "stomach" 2 gm dose of metro at once, myself including!

That wasn't 2 grams of metronidazole in a single dose; it was 2 days of 500 mg twice a day.

Norman, Going back and reading old posts today gave me renewed appreciation for your concise style and detailed observations of your experience.  Keep us posted!

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

In my above account, I neglected to mention anything about the dietary supplements I've taken.  There's not too much to say; I'm basically taking the Wheldon list of supplements, cutting the odd corner here and there when convenient; I started most of them during the period when I was on minocycline alone.  I haven't noticed much effect from them, but haven't really looked for an effect either.  The coenzyme Q10 and acetyl-L-carnitine might have improved my tolerance for cold a bit, but it's hard to say.  The one supplement I expected to see an effect from was, of course, the N-acetyl-cysteine.  There was indeed an effect: one 600 mg pill made me tired and a bit dumber, starting a couple of hours after I took the pill, and lasting for 8 hours or so.  Repeating the experiment a couple of days later produced the same sort of effect.  Repeating it again did the same, except that the strength of the reaction diminished with each successive pill, until after about eight of them it was hardly noticeable; then I started taking it continuously (twice a day), which still produced no noticeable effect.  I didn't seem to have any reactions to it outside the brain: no runny nose, aches, etc.

But that, I recently found, is because 600 mg twice a day was too low a dose to be effective.  Shortly after writing the above message, I increased it to 1200 mg twice a day, as an experiment, and was rewarded with three weeks of NAC-flu: the same sort of tiredness and mental slowness, plus aches, plus a mildly runny nose.  It even went down into my lungs a bit (as the disease had, the last couple of times I'd had a bad respiratory infection).  The total amount of killing of EBs that was done was maybe twenty or fifty times higher than it had been at 600 mg, which seems to mean that 600 mg was not an effective dose for me, even when taken twice a day for several months.

I'm on the same dose.  Had NAC flu a few days with the higher dose, then nothing.  Flagyl seems to bring it on for a few hours each pulse, but that's about it.  I guess I'll be taking it indefinitely, though, considering the benefit. Once I clear my system, I don't ever want to go through this again.  I seriously advocate a year of abx therapy for anyone in middle age; I think so many of the problems we attribute to 'aging' are actually cpn-related.  Don't want to live forever, just want to have good quality of life while I'm here.

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

Higher Dose of NAC? I noticed that Mac and Norman both mention using a higher dose of NAC. You both mentioned increased die off symptoms. Any other side effects to taking more of it? Do you still take the higher dose? Anyone else try this?

Raven
CAP since 8-05 for MS and/or CFS 

I also use 2x1200mg of Nac per day. It is recommended in Dr.Wheldon protocol. I noticed new dying off, when I increased dose, but then nothing else.

Prague, The Czech Republic, On Wheldon protocol for Cpn and Mycoplasma since 02/18/2006.

I'm still on the higher dose (and, after a month of it, still experiencing some die-off symptoms, although they've tailed off considerably).  I haven't noticed any other side effects.

Followup reports on my case can be found here, here, and here.

lots of trouble on this sitr, please pm me if you have ever followed the work of dr. gaeey gordon?