New Cpn CAP Treatment Survey
It's working (I hope). Still a couple of mispellings, but good enough for our purposes!
I finally found a new survey system we can use to get an update on CAPi Treatment for Cpni.
You only get one crack at this. So read the item instructions carefully, and don't fill it out when you are whacked out by flagyl!
Then return to this page, go to the link at the bottom of this post and go to the survey.
To qualify for this survey (only take the survey if you meet the requirements, please!):
Please fill out this survey only if you are currently on, a Combination Antibiotic Protocol (CAP) for Chlamydia pneumoniae (Cpn).
A full Combined Antibiotic Protocol (CAP) for Chlamydia pneumoniae Cpn) is defined as taking AT LEAST ONE ANTIBIOTIC AGENT for EACH of the known phases of Cpn: *
Elementary Body (EBi- the infectious form), such as N-acetyl-cysteinei (NAC), amoxicillini, penicillin, etc.
*Reticulate Body (RB- the replicating form), such as doxycycline, rozithromycin, zithromycin, minocycline, INHi, rifampin, etc.
* Cryptic or persistent form, such as metronidazole (Flagyl), tinidazole (Tinactini), or other nitroamazoles etc.)
DON'T CLICK THE LINK UNTIL YOU ARE READY TO TAKE THE SURVEY AT ONE SITTING. IF YOU TRY TO DO IT AGAIN IT WILL BLOCK YOU! When you are all ready to do it at one sitting (wait for it, wait for it, no impulse problemS here...) then (and only then...) click this link.
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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.
minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)
I could not get it at all, although it might be because I filled it in already.... I got this message:
cpnsurvey2 could not be found. Please check the name and try again.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Hi All,
I've been off line for a few days repairing my pc, well, actually, totally erasing my hard drives and re-installing EVERYTHING. I'm not fully up and running but will complete this when I am.
Why is it the pc always crashes THE DAY BEFORE a major backup???
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Jim, It worked fine for me last night, through all pages. For those who couldn't make the link work, let me find the link Jim sent yesterday and I'll post it here and see if they match up.
Okay - here it is. http://www.cpnhelp.org/Cpnsurvey2/survey.php
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
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Thanks, Nancy. That's the limitation of any survey. We are taking a "snapshot" and it doesn't do justice to the whole picture. Still, if we get enough people responding we may have enough to get the overall trends for better or worse.
If others post here the limitations of their responses or the explanations that the survey doesn't ask about, then we can take it all into consideration in the analysis. Keep 'em coming!
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
My responses today are coloured by being post pulse and this has been a particularly hard one too. So with that caveat here it is.
I did not notice a null value for additional conditions so I assume that mine would count as none (to my knowledge) because I didn't answer those questions.
Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Water kefir. Pulses- a lot!...I can because I think I can.
Jim, could there be a question for those of us who have started "pulsing" but have not reached the full dose for 7 days?
I had to answer "O" pulses since I have not worked up to the full dose. I think there are others here on the site as well in my scenario.
JeanneRoz
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
As Mason said to Dixon: "You have to draw the line somewhere!"
Why are we counting? Because it might matter how many pulses people have done vs how long they have been on the CAPi time-wise.
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
Why I am counting: when I began this life-saving adventure, I was hanging on mentally and physically. Except for my selfless husband, I was alone. This site did not exist and I only knew of David Wheldoni as a physician across the ocean - his, at that time, to my foggy state, sketchy notes on Sarah, were still early in her recovery. I have kept our life on our calendar since 1977, when we were moving and redoing an 1880s house that we moved, gutted, and rebuilt. It was a natural extension to keep close adcount of what was happening to me. And then came Jim K and this site and my discovery of so many of us and the ever-widening circle of the disasters that are at every turn of every day.
It has slowly dawned that the basic protocol (which has worked daily wonders for me), does not do the same for all of us. I am convinced that someday these small bits of seemingly irrelevant details are not signs of ocd but possible pieces of a foundation of knowledga for future prevention of agonized days for many, many deserving people - some may be not so deserving, too, but who's to judge?
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.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
I was surprised at how "uneventful" it was taking the survey. It went well. I was expecting to have to spend more time on it. Thanks Jim
Mary Ann
SPMSi. Dxi 1991. EDSSi 6.0, 6.5, 6.9; Weldon CAPi. started 3/08. All supps, NACi, Doxyi, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Jim, in a future survey, I would like to understand statistics differentiating PPMSi and SPMSi. Possible???
Mary Ann
SPMSi. Dxi 1991. EDSSi 6.0, 6.5, 6.9; Weldon CAPi. started 3/08. All supps, NACi, Doxyi, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition
On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni...
Daisy - Husband on CAPi 5/07. Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone. Ie - the treatment with the conventional MSi drugs killed him.
Daisy on her own CAP 11/2012.
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Jim, if you want people to fill in the survey offer them an incentive! I think everyone who completes the survey by a certain date (say 10th December) should have their name put into a prize draw. The lucky winner would then be chosen at random and recieve his or her prize.
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
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Well, I feel really special! One of only 27. And that was on my 4th try to open it. I have no idea why it opened that time, but it was obviously a personal invitation.................
With the warning before opening it, I was really nervous about being able to accomplish the task at hand-----not to worry--if I can everyone can!
DD
Dxi:CFSi/ME;CPni;Post Polio: On CAPi since 3/05. Azith 500mg MWF, Doxyi 200mg bidi, NACi 1200 mg bidi, Calcium Pyruvate 6GM bid, flagyli pulses, B6, B12, Magnesium/Potasssium 2400/400 dly, Magnascent, Cholestyramine, D3 2GM dly, .
NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
So sorry it took me awhile to get this done. Lots has been going on here and me trying to keep up while running on half empty with pain for company. But today I had a break so got it done. Yay!
Program insistent on answer to reactions to bacteriocides. I have not done them yet. But to move on I had to put an answer in, so put "none".
Was hard for me to evaluate improvement versus increase in symptoms but do have some so decided 10% as it is so early in my treatment.
Thanks for all you do! Please give folks time along with some reminders. Our recent holiday set me back a week. Perhaps others are having a hard time too. Slainte` MM
2002:CFSi. (2008-09:CPNi - CAPi/5 pulses) 3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic.