Cpnhelp.org

You are NOT crazy -or maybe we all are and just don't recognize it - so here we all are learning about our fascinating collective craziness.

Along with a few other mantras I keep repeating is that there is a list.  It feels as though there is a list of a hundred (+/-) and we choose or have piled on us some number.  I agree with you.   What you are experiencing is a recurrect thing in this somewhat exclusive club, membership in which is not necessarily high on anyone's list of choices. 

Rica

What a blessing that your MD keeps reminding you.  In so many cases it is the other way around!

Louise

I wouldn't say this sounds like cpn.  I would say this sounds like your treatment is killing cpn.

I'm sure you've read here enough to have seen the phrase 'you will revisit all of your old symptoms' as you proceed through the treatment.  As the cpn is killed off, inflammation results.  Inflammation irritates all the locations of prior infection.  In other words, wherever you have cpn infection at its worst, you will have resulting reoccurrence of symptoms as the bacteria is killed and the affected area is flooded with toxic dead bacteria carcasses. (Okay, not really carcasses, but toxic byproduct of their death. )   Then, as the area begins to repopulate with new, healthy cells, you'll probably experience some interesting new sensations, too.

It's just the nature of 'our' beast. You'll basically travel back up the long road of decline you were on until you started abx, scenery (old symptoms) and all.

Mellissa- if you took the amoxi for a while before the NAC you wouldn't get much additional reaciton from the NAC: amoxi does the same thing (kills the infectious extracellular EB form of Cpn). Some people don't have as much EB load as others. You'll have to see how you respond to the next set of antibiotics in the protocol.

Like a lot of us, you appear to have multiple organisms you are dealing with. The CAP will cover the bacterial ones you list, but you may need to treat the viral components seperately. Sounds like your doc is watching out for you. As Louise noted, most folks have to shake the tree pretty hard to get attention to these things by their doctor.

Thanks everyone:)

I went to see my ENT yesterday and he was really straightforward - he was looked at my shortened list and says  -I bet some docs have treated you like you are crazy huh? I am not going to though. That was refreshing. He was like- either you are crazy or you have lymes or something like cpn... which he actually knew what it was- that was comforting since many docs I have seen didnt -I know that is no shocker to any of you:) hehe

I am going in for a sinus CT on Friday to see what is up there-- maybe deviated septum causing this ear clog of 5 months now... 

The comforting thing was - he felt all the weird lymphs in my neck and the one behind my ear and said- Yes I feel them... no I wouldnt be worried abotu any of them... and he is a surgeon that routinely works on lymphoma issues... so that is comforting;) my lymphs are just freaked out with all of this. I prayed specifically for some good answers and not a run around and I really got that answer. 

THanks for all who are walking with us newbies:) to help us get going and get our heads on straight.

Melissa

Great news, Melissa!

Melissa,

Fantastic!   Definitely musical words.  Hang on to this guy - and he actually has heard of cpn? - impressive.

Rica

Has anyone used rocephine to fight the infection on iv doxy.  please let me know. Thanks.

I've used and done approx. 3 cycles of IV rocephin - all for varying lengths of time. I have no knowledge of IV doxy.It must be even more difficult for you when English is not your first language.Keep reading and searching.We're al in the same boat and support each other.PM me if you need more clarification.

I've used and done approx. 3 cycles of IV rocephin - all for varying lengths of time. I have no knowledge of IV doxy.It must be even more difficult for you when English is not your first language.Keep reading and searching.We're al in the same boat and support each other.PM me if you need more clarification.