my questions to all you Cpni veterans. is it safe to say that if you were to test your Cpn antibiodies they'd be below reference, thus, negative, right?
assumming the patient is feeling good (after 2 years on CAPi) and with no improvement seen over the last 6 months (hit roadblock). their improvments are noted as >75% improvments. ok, i guess my question is when does one stop taking CAP? i could be wrong, but the marker doesnt seem to be blood test driven, so i am assumming it subjectively up to who he/she is feeling. are there any or a lot of >2 years CAP'ers that will be ceasing soon?
do many people come on here after life on CAP? regardless of good, bad, a relapse, or 50% improvement after years of treatment, i'd love to hear what they say. i'd love to hear from those patients (the patients off abxi)... do they wean off the abxi? is it essential to continue with natural regimen of anti microbials after abx? i'd love to hear any thoughts on life after CAP, how far away they are, and how they are gonna approach it...
well, you know youre tired with you see letters on top of each other.. =-) i better sleep, but look forward to some informative post tomorrow..
Keith
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Doxyii 100mg q12hr; Biaxin 500mg q12hr; Amoxicillinii 500mg q12hr; Armour 1 grain; T3; Cortef 15mg; 4000 units Vitamin Dii; Ursodiol; prescription enzymes; life extension vitamin/minerals

Very good question. I
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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.
your not having anymore
your not having anymore reactions to the flagyli pulses or rifampin?
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyl,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<Keith - Good questions. I
Keith - Good questions.
I believe after Sarah quit having reactions to the Flagyli pulses a little over a year into treatment, she and David made the decision to move to intermittent antibiotic therapy to make sure the disease was really gone. She describes this in her blog and posts. Not sure how many years she did the intermittent - 2 maybe. Last year she discontinued all antibioticsi and still feels great.
There are others here that have also discontinued antibiotics and are still feeling great. Some of them come back to post from time to time - some seem to fade off into the sunset and life again.
There are also those still on antibiotics and taking Flagyl pulses several years out because they still react to the Flagyl pulses. Katman and MSWillow are examples of bloggers who have been on CAPi for 3 years and still aren't done yet. Katman improved greatly a while ago but still feels she has a way to go and MSWillow is just recently making improvement. Think they both have incredible tenacity and courage.
Believe that Stratton patent advises that it may take 3 to 5 years of therapy either full time or full and intermittment to fully eradicate CPNi from your body.
Part of it seems to be how agressively you can tolerate going after the bacteria and still working/caring for yourself and children. That effects rate of progress too.
It seems you can always tell when routine posters/bloggers here get significantly better - they start posting less and then less and then even less because they are living again. I won't name names but I am really happy for them.
Daisy - Husband on CAP 5/07. Roxyi, Diflucan round three 4-3, Rifampin, Bactrim DS, Mepron, Prednisone,
Novantrone, Doxyi, Azithromycin, Flagyl, Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
delete double post
delete double post
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
This is just my
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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If you relied on testing,
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
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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
I think a good question to
I think a good question to ask yourself.. just because you dont feel any die off reactions, does this mean that you are not still killing CPNi?
does the 1 year for antibioticsi therapy for every 10 years of infection, begin once you are tolerating the full protocol, naci, doxyi, azith and flagyli?
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpn, myco, EBVi, CMV. NAC 4000mg, doxy 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyl,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<Well, since I must have been
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I think that's it,
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
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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
Yes, MacK, the same kind of
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 53 pulses LDNi Rifampin 8/08 again NC USA
I think it's a good rule of
I think it's a good rule of thumb that when you cease having reactions to the Wheldon CAPi antibioticsi and pulses, and can add Rifampin to this and not have reactions (and may want to add amoxicillan to this to clear as much EBi as possible), then any remaining stuff should be taken care of by intermittent therapy for the next year.
We are probably about approaching that for some people on this site, but most of the folks who have cleared treatment have done so before Cpnhelp was created, i.e. were treated by Dr. Stratton and a few others. Some people may go on maintenance of some kind of periodic treatment, depending on their individual case.
CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Keith, thanks for asking
Keith, thanks for asking this question I am enjoying following along with the answers too.
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi, CPN+/Bb+, Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi PRN, Doxy100daily, Roxi300BID, Tinii 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support
Well, Sarah's weighed in.
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
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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