Treatment stopped working

Hi. Having been diagnosed with Cpni a while ago, I started an antibiotic protocol (Doxyi, amoxicillini & pulsed metroniadazole) and have been on this for 12 months now. The initial couple of months were difficult, but once I'd got through this, I began to feel much better and started to improve each week.

However, the last 5 weeks I have relapsed and felt much worse. I haven't changed anything. This is so upsetting because I don't know why. I have tried detoxing more but this has made me even more poorly. I decided to stop the antibioticsi a few days ago and am definitely feeling a little better. Does anyone know what this means? Should we be taking regular breaks on antibiotic protocolsi? I haven't experienced total symptom relief yet and I know it's advised to stay on the protocol until symptoms resolve. I do think I have an underlying immunei dysfunction so may not get total symptom free health but I was doing so well on this protocol. Any help would be appreciated x

This is not a protocol where you can expect steady improvement.  It's more of a rollercoaster.  Your body may have reached its limit of being able to purge the stuff you're killing off and it isn't keeping up.  You may have inflammationi from the battle between the bugs and the abxi.  This is not a continual, gradual improvement graph; it's a two steps forward, one step back kind of dance.

Please keep taking NACi, at least, to help ward off a new cpni infection.  

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

Hi Katy,

What doses of antibioticsi were you taking, and why were you taking amoxicillini instead of a macrolide like clarithromycin?

Phil

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Mother has probable Cpni infection, may also have Lyme Disease. Not on CAPi yet.

 

 

Hi Katy,

I don't see NACi in your protocol. Are you taking the amoxycillin instead of NAC for EBs?

Like Phil comments-no macrolide in your protocol. I use azithromycin 250mg M,W,F.

Chloe

Hope you're feeling better in the month since the original post. Right now I am in a similar place, one thing that helped me a lot is someone here telling me that you might tend to cycle through your symptoms in reverse order on the protocol. Right now I ache all over like crazy and feel tired and de-motivated like I have the flu (but without any other symptoms). This was something I went through when I first got sick with CFSi, 20 years ago - so I try to remember that I'm making progress and maybe the light at the end of the tunnel is coming (hopefully it's not an oncoming train!!!!).

I've been on the protocol for a year and a half, and went through several ups and downs - but stick with it - particularly if you have felt better on it (I also did). I think its a good idea to listen to the comments above from those on the forum who have experience with the protocol - each part is important. Also consider taking a mopper of some kind - maybe activated charcoal or Cholestyramine - there is better info on this than I can give here in this part of the site:
http://www.cpnhelp.org/secondary_porphyria_what_<
As I understand it, these "moppers" can make you feel better when your body is processing a lot of generated toxins due to the CPN dying, and/or help mitigate some of the physiological disruption caused by the organism. Introducing them about 6 months ago helped me when I was feeling bad at that time. Keep at it as much as you can.

If you stopped antibioticsi I think you can always re-start - or go intermittent - others here have some experience doing that - I think both Sarah and Mackintosh did (Sarah after 1 year - Mackintosh after more than that...) Come to think of it info on how to do that isn't easy to find here - is there a recognized good way?

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