Cpn treatment experiences

Questions and comments about treatment, what helps, what happens.

Quick poll on reactions to CAP meds across 24 hour period

Submitted by Jim K on Thu, 2008-03-20 08:53

Trying to sort out what reactions might be due to for Daisy's husband in a recent thread made me think: "We've never gathered any data for reactions from time of dosing."

So I threw together a quick survey to see if we get any patterns.

Click on the Reactions By Hour survey.

It asks that you have observed for two days, so take a look at what's being asked but don't fill out the survey until you have your 2 days of observations! 

Yes, yes, I know that there will be things wrong with it, and some questions missing, etc., etc.. Just do it to the best of your ability. 

Flagyl (metronidazole) versus Tinidazole (Tinactin): differential responses?

Submitted by Jim K on Sat, 2006-06-24 19:11

As we have more people on the CAP protocols longer, our community is accruing clincal priceless experience with the different medications used and course of improvement and diffficulties on the CAP. One of these areas for observation and discussion has been use of Tinidazole versus Flagyl, and it's effect on treatment and course of recovery. There has been another thread discussing these, but I thought it was time to restart the discussion now that a number of people have experienced switching back and forth between these meds. So my own comments (posted on Rica's blog also) below.

Tini vs Flagyl-- interesting questions.

I have to say, after doing Tini since pulse 3 and then trying Flagyl again for my last pulse (pulse 16) they do have different effects. Not just different side effects. It is possible, as our clinical experience accumulates, that there could even be good reason to do courses of both, or alternate them for pulses.

Infusion Antibiotics - any experience?

Submitted by Tommi C on Tue, 2018-05-15 12:57

Hi Everyone,

We have found a Naturopath (very very expensive - we don't know if his fees are out of line or not, but 500 an hour seems a lot!).

Rick has an appointment to see him in August after an initial interview a week or so back.  The Doctor is an infectious disease specialist, who knows of CPN, the other Doctor we were working with and perhaps Dr.'s Stratton and others.

During his conversation with Rick, he mentioned that IV antibiotics (infusion) - with a port installed, may be one way he will recommend going.

Herx reactions and Biological rhythm

Submitted by Tichka on Sat, 2018-05-05 18:33

Hi,

1rst question :

Can you tell me what are Herxeimer reactions normally when treating Cpn ?

If you don't have any Herxeimer reactions, does it mean that treatment is not good and that it must be changed ?

2nd question :

Do you have any cocktail of meds to restablish biological rhythm ? Melatonin or others meds ?

Thanks.

Porphobilinogen low...Porphyria?

Submitted by tgferg67 on Mon, 2018-04-30 17:14

Hi, I have a low porphobilinogen test after the Zhang protocol and Wahls diet to treat CPN(Chronic Fatigue Syndrome)) for 2 months. Awful symptoms led me to have this test done. Is this porphyria? 

Porphobilinogen concentration was below sensitivity of the assay, 0.5 mg/L. Therefore the result was <1.1 mg/g creatinine. This result was calculated by dividing 0.5 mg/L by the creatinine concentration in g/L

3 Antibiotics Treatment and toxicity

Submitted by Tichka on Sun, 2018-04-29 21:02

Hello,

My doctor gave me 3 antibiotics to take at the same time but I wonder if it's not too toxic for the liver and if it's efficient for Cpn.

I have Multi systemic infectious disease Syndrome due to Cpn and I'm very anxious.

- 200 mg Doxyxycline a day

- 500 mg Fasigyn a day

- 500 mg Azithromycin, 4 continuing days by week

Are there other people treated for Cpn with 3 abx at the same time ?

I also started on my own NAC 600mg a day, A cetyl l carnitine, 3 omega, COQ10, D vitamin.

Thanks

MRI - FIRST RESULTS

Submitted by Barcelona on Thu, 2018-04-26 06:28

Hi guys! :)

This is Gisel.la. I just came back from the CEMCAT visit. It seems my last MRI had 9 new lesions, so I will be considered from a low to a medium load of lesions. 

I explained I quitted the Copaxone and I started the Protocol. They insisted into going back to this Copaxone. 

I am still under the shock. I guess I expected no lesions or a lower number of them. Have anyone any advise to give? Is it normal at this lenght of Protocol?

Thanks a lot for any advise, info or personal experience! :)

Online antibiotics

Submitted by Roli on Mon, 2018-04-23 10:50

Hi everyone!

My name is Roland. I am suffering from asthma since 2016. This site helped me so much. I started the abx protocol 6 months ago. I felt so much improvement after the 6 months. Meantime my doctor stopped to prescribe me antibiotics. Becsuse he thought i am already cured and he didnt know about cpn too much. And after 3 weeks i started to be sicker and sicker. Im from Hungary and here not too easy to get abx. Almoust imposible. I looked for online pharmacy but those i found dont deliver to Hungary! 

Can anybody help me where or how can i get antibiotics? 

Thanks for your answer. Roli.

Wheldon Protocol vs Buhner Protocol

Submitted by Tichka on Thu, 2018-04-19 21:37

Hi,

Could you help me ?

I asked to my doctor to give me Wheldon protocol but he does not know it very well.

He gave me 2 months of Azithromycyne (500 mg) and 1 month of Fasigyne (500 mg) in January and February. I did not noticed any improvement or bad reaction.

Then I asked him to add Doxyxycline as in the real Wheldon protocol and he gave me for 2 months :

- 200 mg Doxyxycline a day

- 500 mg of Fasigyne a day