Cpnhelp.org

MaryAnn, I hope Rica will be along to recount to you where she was at  at the point of one year into the program.  i am optomistic that she will have some good experiencee to share with you.  Louise

___________________________________________________________

6-07WheldonCAP CPnBb FMSⁱ-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxinⁱ

3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU

2-09Intermit-CAPDoxiRoxiClari,Tiniⁱ, 2-09LDN-CFS

1-10-IT+Ursodiol300Bid+Lauricidin

MaryAnn, Just my 2 c worth. May be changing  abxⁱ could help? I had some improvements from the start of my CAPⁱ but relapsed at approx. 9 months into treatment. Then I added one more abxⁱ and it helped. On a 2nd year I started to change abx one by one. First I switched from Doxyⁱ to Minoⁱ, Then from Rifampin to Clarythromycn. I did a longer Flagy pulse also. And the result is significant.

Nata. CAPii since Jan'08 for arthritis, tendonitis, sinusitis, general malaise and more. Cpnⁱ (+), Lyme (+).

___________________________________________________________

Nata.

CAPⁱ since Jan'08 for arthritis. Doxyⁱ, Rif, Azith, Bactrim. Ongoing: Minoⁱ 200 mg/day, Clarith  1000 mg/day, Amoxicillinⁱ 2000 mg/day, Flagyl pulses. Vit D 5000 UI & supps.

How did you know what to change from/to?  What is 'Nata'?  The way I read your signature, you started CAPⁱ 1/08.  It would be good if you expand or change your signature -- it sounds like you have had significant success. Are you under a doctor's care?  I am not, altho my neurologist is prescribing my abxⁱ.  I am following the Wheldon protocal.   Thanks for your response.

___________________________________________________________

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 

Rica has already related her experiences.  Sounds like I may need to make some changes but I really don't know where to start.  hHow did you get advice?

___________________________________________________________

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 

I had a little glimmer of improvement after about two months (I caught my watch in mid-air after knocking it off a shelf) but other than that, I didn't really start to see a lot of improvement for the first ten pulses or so.  This is a marathon and if you've already made it through 11 pulses you can go the distance. 

___________________________________________________________

CAPⁱ for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazoleⁱ + INHⁱ completed 3/12/2009.  Intermittent treatment thereafter until 8/7/2009.  

Mary Ann,

Sorry for my siggie. For some reason I keep having problems with it. I don't know if it is my computor or the website but my siggie gets cut off.

Anyway, I started CAP in Jan'08 prescribed by LLMD. I was (+) for Lyme Western Blot IgG and I had Cpnⁱ (+) from 2007. Although I had brain fog and minor join pain issues probably for the past 10 yrs, most of my decapacitating symptoms had developed in 2007.      

I started CAP with Mino 300 mg/day + Rif 600 mg/day and ended up with huge reactions. Then I re-started slow and built up to full doses. So I was on Doxyⁱ 100 mg x 2/day and Rifampin 600 mg/day from March '08. For short time I also took Azith. I went a long time without pulses and kept improving anyway with occasional relapses. Sometime in the fall I experienced a major relapse which is always hard to differentiate at first if it is relapse or die-off but now looking back I know it was.

In Nov'08 my LLMD added Bactrim DS full dose in addition to Doxy and Rif. That really helped me and  got me thinking. We all start from slow dosing and sometimes very slow b/c by the time we come to CAP, we are too much "bacterioloaded" and can't tolerate die-off. Development of resistance is possible or other factors could be at play. So, it's good to change something in the protocol or even re-design CAP completely when someone sees diminishing returns or no effect at all. 

So, since this year I decided to change all my CAP components one by one. At first I swapped Doxy for Mino in Jan'09 and despite them both being same class of abxⁱ, it still worked. I got die-off reaction that I hadn't had in a while. Then I finally started Flagylⁱ but instead of doing a short pulse I go till reaction. I realize it's risky & painful but gave me a jump in improvement. my LLMD also for long pulses, 14 days. A week ago I changed Rif to Clarithromycin and waiting effects right now. My next step is to stop Bactrim and get rx for Levofloxacin if my new dr will go with that.

I feel that all the above changes, including having a 3rd antimicrobial (Bactrim) in the mix were dramatically benefitial that why I suggested for you to try a change. You've been invested in CAP already for a year so why not to make sure you tried everything since there is a range of meds proposed for this treatment and some people do better on different combos.  

Nata (my forum name).

CAP since Jan'08 for arthritis/tendonitis/bursitis/muscle pain, sinusitis, PID, ear pain, hypertensionⁱ, cognitive imparements, chronic cough, costochondritis, painful heartbeat/palps, general malaise and fatigue. Doxy 200 mg/day Jan'08 to Jan'09 + Rif 600 mg/day Feb'08 to Apr'08. Azith 300 mg x 3/week Jan'08 to March'08. Bactrim DS since Nov'08, Mino 100mg x 2/day since Apr'09 to now. Clarithromycin 500 mg x 2/day Apr'09 to now. Today feel appr. 80% improved, some days 90%. Still have some mild but stubborn symptoms. Energy & strength is 95% back at least! 

___________________________________________________________

Nata.

CAPⁱ since Jan'08 for arthritis. Doxyⁱ, Rif, Azith, Bactrim. Ongoing: Minoⁱ 200 mg/day, Clarith  1000 mg/day, Amoxicillinⁱ 2000 mg/day, Flagyl pulses. Vit D 5000 UI & supps.