Please advice
Hi guys,
I had CPNi infection 4 years ago. It started with 4 months of cough and eventually was diagnosed and "cured" by 2 weeks of azithromycin. Anyway later on I got CFSi symptoms and eventually found cpnhelp.org where I had the chance to read and get so much information. Due to the fact that perhaps I am the most knowledgeable person in my country (Bulgaria) on the CPN subject, I cannot get any local support or help. Back there (some 4 years ago) I started some mix of antibioticsi on my own + NACi and some other supplementsi for several months and got my CFS symptoms improved and titers lowered. I eventually thought that my situation is not that bad and I got rid of the bugs.
I have been doing blood tests on an annual basis. This autumn, along with some familiar fatigue signs, I found that the IgG titer is increased to 1:64. IgM is negative (0,7). What is this supposed to mean? Should I go test IgAi?
Now I am taking NAC nearly a month (600 mg/day) and recently increased it to 2 x 600 mg/day. I don’t have any reaction to the NAC. I recently read the new Emerging Stratton Protocol 4/2008 and I am considering that I may put myself to the supportive part as described here:
“I would continue to monitor titers every several years. If the titers increased, I'd retreat with 6 months of clarithromycin or roxithromycin plus rifabutin plus pyruvate and ibuprofen. I'd continue the NAC for life.”
Is this going to work in my situation? What about adding some metronidazole pulses? Why is ibuprofen needed?
Any advice will be appreciated.
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No time now, but you have had no answer.
Probably you will need to do the basic WP of Doxyi, Azith, tinii or flagyli, and supps. You obviously are declining.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
OK, lets say I go on the WP. Should I start the initial gradual part if I don't have reactions? All I got is some fatigue signs, IgGi 1:64 and no reaction to NACi. From waht I rememember 4 years ago I didn't have major reactions to abxi as well. And I was exactly on doxyi, azith and flagyl.
Can't I go directly to the final part:
"The eventual aim is to give all three agents intermittently so that the patient has a respite from antibiotics. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazole in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended."
What is the minimum course suggested in this case?
Is it reasonable to do this 14 days pulses for 3 months, check titers and if improved to continue once in 2 months let's say?
One more thing I couldn't figured out with certainty: Does NAC alone prohibit CPNi spread? It blocks EBs outside the cells and this should prevent further infection spread, right?
Jumping in the deep end is what I have always done, too. I began on Rifampin and Doxyi. This was long before this site began. My feeling also would be to begin all of it since you tolerated it before and don't have too much going on now. But be sure to take enougjh Vit D3. I take 9000 iu a day, but you may do well with 5000 or 6000. I am not a doctor - don't even play one on TV - and can only relay my own experiences and what is written here. But do the supps, including the very important minerals, especially magnesium and selenium, being careful always not to overdo selenium (which must have Vit E available to work).
Having said all that, don't be in too much of a hurry to go intermittent. I was and fell very hard.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Just an opinion, but you sound as if your health is deteriorating. In that case, I would be on the full protocol, not playing hit and miss every few weeks or months. Take the medicine, kill the cause of your disease. I would never be satisfied to hope I was simply 'keeping it in check'.
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
Thank you all for the responses!
I have just read the full davidwheldon page. What's really bothering me is that this protocol is aimed for MSi treatment, where CPNi is most probably spread into the brain. This is why the course is recommended for at least 1 year continues intake and then go intermittent for let's say 6 additional months. Should I really take antibiotics for year and a half?
Few more questions: How and When you could be certain you got rid of it completely? How can I be sure that I have CPN now? I mean from what I read serologyi is not reliable at all. Has anyone of you stopped abxi and cured completely?
Now that you've read the full protocol, many of your questions can be answered by reading the Patient Stories. Cpni is the cause of our various diseasesi, so don't limit your thinking to just one disease, like MSi.
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
My C.pn was also diagnosed 4 years ago. My "specialist" putted my on chlarytomycine and isoprinosine every time. The second is an immunostimulans-giving medicin. I know that it is expensive and only is recommanded if you're having a sexual transmitted disease (people look strange if you say that it is just for a C.pn-infection), but it worked fine with me together with 4 weeks of chlarytomycine. It has little side-effects and i started to get better after 1 week taking the isoprinosine. Maybe if you can get it in your country it works? But be carefull, don't take it too long because it can cause some liverproblems. 4 months where enough for me to feel relatively better. (sorry for my bad english)
It did miracles with my to my fatigue, energy and general health, i hope if you consider to take it that you will be full of enery in no time :)
Kind regards, Mellinda