ok, i just posted a kinda long post on my history and current condition.. i hope the post was NOT too long. i do have a question, but i HOPE it doesnt sound STUPID..
my question is i just voted for "who is on CAPi WHO is just looking" well, i notice ONLY 120 people voted. does that mean ONLY 120 people on this site are on CAP protocol? i guess being a new user i'd just LOVE to hear that 120,000 people are on the protocol. why does ONE think there is SUCH a small amount of CAP users? out of the 120, how many does one estimate that has had a >75% relief of symptoms? well, i am a new user, as i KNOW this is what i need to do, i just want to KNOW that there is LIGHT at the end of the tunnel.. 
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
Well, I'd say I have 98%
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
Like you, I came here
Like you, I came here wanting some certainty that the CAPi would work. Few things in life are certain. In the case of M.S., this treatment rejects the fundamental assumption of an autoimmune origin held by most doctors. If 120,000 people were doing the CAP and significantly improving then people wouldn't have to lurk around user blogs and whisper the names of treating doctors like someone trying to get a bottle of scotch during prohibition, it would be a mainstream treatment.
Note that in the upper right of the page is a post entitled "2 Years 17 Weeks". It refers to how long this site has been up. The CPni Handbook notes that the duration of treatment is expressed in years. That means that most of us are still doing the treatment so that its too early to say very much.
For me, the decision wasn't based as much on anectodotal experience as it was the stark reality that M.S. was going to put me in a wheelchair - probably before I could retire. The CAP has a relatively low potential to do any permanent damage but an enormous potential benefit in possibly stopping disease progression. With much to gain, little to lose and the whole program costing less than what I would spend on Copaxone in three months there seemed to be no excuse to not do it. I am early on in the CAP and I would hesitate to quantify my improvements, but I have had some hopeful signs that you can read more about in my blog.
CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Fourth pulse metronidazolei completed 1/23/2008.
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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008,
150 mg Roxi (2 x day)starting 3/2008, ended 5/2008. Twelfth pulse metronidazolei & INHi completed 8/28/2008.I totally agree with above
I totally agree with above comments. Give yourself time, read some stuff here, in the handbook and in patient's stories (top of the page tabs) and you will eventually get a feel for what this treatment does and how it does it. There are no quick fixes here, either in terms of understanding the disease or in terms of recovery, or even in the acceptance of the protocol by the medical profession.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Just having two people on
Good Luck and keep posting
I'm not sure I ever
I'm not sure I ever voted............Sarah
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I cant remember (imagine
I cant remember (imagine that) but I may have voted while I was still researching the protocol.l
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun,
estriol, progesterone, synthroid, and pulsing w/flagyli.___________________________________________________________
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<I know I never voted as I
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Doxyi 100mg 2X's/day;
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Doxyi 100mg q12hr; Biaxin 500mg q12hr; Amoxicillini 500mg q12hr; Armour 1 grain; T3; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals
Doxyi 100mg 2X's/day; Zithro
Doxyi 100mg 2X's/day; Zithro 500mg MWF; Flagyli Pulses; NACi 2400mg; Testosterone 200mg; Armour thyroid 3 grains; Cortef 15mg; life extension vitamin/minerals
i want to THANK everyone for all the comments! this is SUCH a great site! i am still VERY green (in terms of knowledge about treatment), but love health and consider myself a very educated patient. i'm also 3 months away from being a registered nurse..
i am confident that this is WHAT i need to do and after reading all the information on this site it only HELPS to solidify that confidence..
thanx again.
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Doxyi 100mg q12hr; Biaxin 500mg q12hr; Amoxicillini 500mg q12hr; Armour 1 grain; T3; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals
Congratulations, Padeyas,
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 49 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 52 pulses LDNi Rifampin 8/08 again NC USA
Keith, whew!! you are
Keith, whew!! you are amazing. I'm a nurse (graduated 91). This past fall, it got to the point, that I was having comprehension problems when readings bits and pieces of this site. it's better now. I could not imagine going through nursing school with all of this going on...you truely are a strong person..
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun,
estriol, progesterone, synthroid, and pulsing w/flagyli.___________________________________________________________
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<Doxyi 100mg 2X's/day; Zithro
Doxyi 100mg 2X's/day; Zithro 500mg MWF; Flagyli Pulses; NACi 2400mg; Testosterone 200mg; Armour thyroid 3 grains; Cortef 15mg; life extension vitamin/minerals]
Sharon, thanx so much, i appreciate the comment! i am NOT going to lie and say nursing school is extremely hard.. its NOT! i sure med, law or any doctoral graduate program can be challenging, but you're TOTALLY right! when you have a condition that limits you its like youre climbing a foothill with a 100lb weight attached to youre back! with me, the ONLY thing that kept me in school was my loving parents. they allowed me (financially) to attend school and NOT work.. it wasnt easy for me moving back with them, but theyve been so supportive! my first year was sooooooooo HARD! sometimes 6 days out of the week i didnt have the energy or my brain fog was soooooo intense i couldnt do ANYTHING! i would find that ONE day i had the energy to study and utilize it. today, i have about 4-5 days of those days with decent energy, so its getting a little easier.. my clinicals were the hardest for me! unlike the theory portion (classroom stuff) where you have a test every 2 weeks and you can study on your OWN terms, clinical you have to be there on SET days 1 or 2 times a week (sometimes 14 hours/day). well, when youre sick and it JUST happens that your clinical lands on a day where your energy/brain fog is at its highest! well, it makes things really tough! my first semester i had a dictator like teacher.. she would NEVER even smile. she was evil! well, i remember days she would just DRILL me in the hospital and it was SOOOOOOOOOOOo hard! i have always been a VERY strong person (mentally), but i would go home and almost feel like crying! i would PRAY ("dear god please get me well! please just give me the mental strenght to get through nursing school")... again, i am NOT going to lie and say nursing school is HARD, but again with this chronic condition it just makes it sooooooooooooooooo much harder!!!!!!!!!!
the bright side today is i feel about 40-50% better then i did 2 years ago.. i have re-balanced my hormones and even though it didnt cure me (my doctor KNEW i had a immunei dysfunction, but thought re-balance my hormones could fight off the infection for me) it has given me a lot more strength... actually, i am REALLY surprised MORE members here have NOT re-established ALL their hormones levels too. i believe ANY chronic infection will disturb your HPA axis causing a cascade dysfunction on your hormones.. i say this because hormones have GREAT immune modulating functions.. so my rationale is the DAY my bodies CPNi or bacerial load is low enough my immune system will be in place to fight the battle.. wow, did that make ANY sense? ahahhhahaahhh i guess its KINDA hard to find that doctor that will look at EVERY horome and re-establish it to a level when you were young.. i guess testing can be difficult too.. there are a LOT of false-positive results when it comes to hormone testing.. i mean, a LOT of times your thyroid might show on labs that youre in reference when youre not (have hypo symptoms).. my doctor, at times, prescribes on patients results/feels and NOT always blood work... an example is cortisol.. its a REALLY hard hormone to test.. your hormones change so much thoughout the day and according to Dr Teitelbaum (read "from fatigue to fantastic") he states cortisol testing has a 4mcg testing error range (i forget the medical term), but that means you can have TWO DIFFERENT vials of THE SAME BLOOD drawn at the same time and it can show different results (+ or - 4mcg). well, when 2mcg-12mcg/dl is the reference range that 4mcg can make someone with addrenal insufficiency seem sufficient... i use cortisol as an example because it is the hormone that has given me the MOST relief.. 2 years ago i would have NEVER thought of taking CORTISOL and always thought of it as an EVIL (catabolic hormone- breaks down muscle) hormone.. early in my illness, i actuall though cortisol was my problem and i took ANTI-CORTISOLS.. well, if ANYONE knows anything about low dose cortisol (less then 20mg) its a safe way to alleviate MANY chronic fatigue symptoms.. remember its LOW DOSE NATURAL HYDROCORTISONE (low dose is an immune stimulant).. with prednisone i believe every 20mg is equivalent to 1 mg of hydrocortisone.. predinisone is a NO NO as its way too HIGH and does NOT mimick your own bodies release (too long of half life)! well, i dont want to ramble too much about hormones or just in general, but all i can say is out of ALLLLLLLLLLL the things i've tried over the last 5 years in my quest to solve MY riddle of illness known as chronic fatigue, LOW DOSE CORTISOL has helped me the most.. it has ABOUT 75% eliminated my brain fog, cleared my allergies, helped with dermatitis and allowed me to take less thyroid (they work synergistically)... there is a book called "safe uses of cortisol" by william jefferies.. it really helped ease my mind about using this hormone i have always thought was so negative..
i am so sorry for the long post.. i am new and i guess i'll have to learn where and HOW MUCH things should be posted. in the future, long PERSONAL post (like what this one turned into about my experiences with hormones) should it be posted on my blog? what distinguishes a blog and a 'recent post"?
healthy living,
Keith
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Doxyi 100mg q12hr; Biaxin 500mg q12hr; Amoxicillini 500mg q12hr; Armour 1 grain; T3; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals
Keith - If you're changing
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
Doxyi 100mg 2X's/day; Zithro
Doxyi 100mg 2X's/day; Zithro 500mg MWF; Flagyli Pulses; NACi 2400mg; Testosterone 200mg; Armour thyroid 3 grains; Cortef 15mg; life extension vitamin/minerals
Mac,
you're TOTALLY right and i have EVER intention to ELIMINATE every hormone (except MAYBE testosterone) i am currently taking. my doctor agreed that MANY people can wean down most of their meds (including hormones) once the immunei dysfunction has been eliminated..
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Doxyi 100mg q12hr; Biaxin 500mg q12hr; Amoxicillini 500mg q12hr; Armour 1 grain; T3; Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals
Fingers crossed! For ALL
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