27 Apr 2018

4 months into CAP treatment for MS


HiI am writing on behalf of my brother who has SP MS. He has been taking both doxycycline and azithromycin for 4 months, he has been feeling pretty rough but able to deal with it on most days, apart from a couple when he has been either very weak or stiff in his legs - This has happened on waking in the morning and it has prevented him from being able to stand however it has eased over the duration of the day.


Swells and brother,

Congratulations on a good start.   I am so happy that you found this place and began the long trip.  

Yes, everything will get worse at times, and maybe you will get some new "stuff".  We are not here to have fun, though this is an incredibly fun, heroic bunch.   Remember the hand at the times when things get rough - we all have to hang on at times.  If you are still walking, you may get worse and then get even better in the long run.

Five years ago, I was sinking amazingly fast and we sold half of our herd of beloved goats.  Now, I am in the busiest time of the year and am working fifteen or sixteen hours a day taking care of the herd that we have built up again.  None of us knows how much we will get back, but at the least we can stop the progression and have a life.  Stay with it and with us.


3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

It sounds like your brother has already experienced some improvement.  Congratulations.

The first few months were rough for me, too, but it quickly got better.  When I added the flagyl pulses, the aftermath of the first few pulses was also a real stuggle but within about a year I was doing pulses and actually complaining that they weren't making me feel bad (you know, the whole "medicine has to taste bad to work" mentality).  

Is your brother also taking the suggested supplements and the things like charcoal to help absorb the bacterial debris?  If not, they made a big difference when I got as serious about taking them as I was about taking the antibiotics.

CAP for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazole + INH completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Stick with it! My first few months were changeable, some good & some not so. When I started pulsing I soon realised that feeling ill was positive news,  CAP was winning the battle.

Jen Image removed.

CoolIf I have the belief that I can do it, I shall surely acquire the capacity to do it, even if I may not have had

Swells, it gets better, In my case I just to try to accept that die off and the unbareable feelings it produces are normal and expected. I dont get fearful when my hearts start to beat quickly for example, because I just assume its porpheria or toxin related die off rearing its ugly head. Try to stay buzy, or keep the mind preoccupied with other stimuli helps alot. Movies, reading, trips out. Hang in there swells/ brother



Thanks for all your comments. It really helps to hear other people's experiences - we know that it's not a quick process but your comments provide inspiration to carry on with the treatment. It means a lot to my brother and his girlfriend to hear positive, honest stories. I will update on his progress soon...


Many thanks once again. 

Hello Serina, I am glad that you are checking back in.  I know your brother is in good hands after reviewing your previous post.  Yet still it is reassuring to get feedback from those similar to your brother that the road is yes hard but worthwhile.  As Rica said we don't know how much return to function we will get but cessation of progression is in itself worth so much for continued quality of life.  All of us here using these variations of CAP have that objective in common improved quality of life. 

Your brothers improvement in his use of his hand is important to focus on as Rica points out.  If his girlfriend and he can read the blogs of those that have been on the protocol over time with SPMS it could be reassuring to know the pattern that other's have gone through. 

Your brother is so fortunate to have you as his advocate and investigator. I hope you will update here often.   Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support