30 Dec 2020
Author
toliveagain
Title

Toliveagain Update Dec 31 2020

Body

Hi All,

Just checking in. I have been on CAP for 8 months now for MS. I just finished pulse #7. Flagyl was kicking my butt. With my last two flagyl pulses I was only able to take 3 pills each, evening, morning, evening, then had to stop because I felt so bad. And recovery was taking longer and longer. With my last flagyl pulse that ended Nov 16, it took me almost 6 weeks to recover. I guess that is good news. Means good amount of die off of bacteria.

Comments

toliveagain

30 Dec 2020 07:55 pm

Wow, whole second half of my post did not post. I'll try to remember what I wrote...

With pulse #7 I switched to Tini and took 500mg morning and night for 4.5 days before I started to feel sick.

I want to report good news. We so rarely get good news here because there are so few people on the forum now. But for the week just prior to this last pulse, 3 of the 4 symptoms I use to monitor my progress had improved significantly: Balance, walking and cognition. For balance and walking, I even bought some 2 inch heels and wore them all night without feeling like I was going to fall. I haven't worn heels of any size in over 5 years. For walking, a few days ago I was walking with a friend and ended up walking for hours. In the end we had walked over 33,000 steps in one day. And I could have walked farther. For cognition, I had some of my first clearish days where I did not word search and I made jokes and basically felt like my thought processes and communication were just shy of normal. 

The 4th symptom I monitor is memory. Although it is a bit better, it still not as good as the other 3, but I am hopeful that will come around soon.

And if you remember a few posts ago I was horrible problems with my feet flushing and burning. The pain was incredible. Someone here wrote that they thought people often felt pain just before the gained improvements. I would like to report that has been true in my case. The redness and burning has diminished and moved closer to the periphery. Now it just seems to be my toes and occasionally the bottom of my feet, but it is much easier to tolerate now. And the good news, my lower extremity sensations are returning. I can feel my feet on the floor and my toes in my shoes. When I tickle the bottom of my feet, I can feel even light touching where I could not just a few months ago.

I still have acne and really bad emotional days when I have larger die off, like with pulses. But I use those to tell me when I need to end a pulse or maybe drop a dose of Doxy or two in the middle. The emotional days are tough. I can lie in bed all day crying about dumb stuff. But I have learned to enjoy those too. I just figure those are the days that I take care of me, I eat cookie dough, write in my journal and cry while I watch romcoms on Netflix all day. Great excuse for a "me" day, and again, just lets me know the antibiotics are working.

It was really difficult the first 8 months. I didn't know if my MS was getting worse or if I was having die off. But I have learned the routine and I have started to see improvements and I am energized to keep going. I know I will hit setback and digress before I get better, but man do I feel good with my progress so far.

So Happy Holidays everyone. And Happy New Year. I know this is the start of a great new year for me and I wish the same for you.

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.

neenavyas

3 Jan 2021 02:44 am

Dear Toliveagain

What tremendous news! It has certainly cheered me up and built up hope for Sonal and others like Shris struggling with even a teeny weeny bit improvement in mobility. Yes you are right. Years ago Katman felt incredibly shooting pains and other sensations in her legs before the real improvement began. So carry on warrior.

You are lucvky to have come across the Wheldon protocol before you badly lost mobility. Alas in Sonal's case we chanced upon the site only when she was already pretty bad and could not walk even a few steps completely on her own.

Hopefully the New Year will bring cheer all around. Take care

neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Sarah

6 Jan 2021 03:09 pm

Toliveagain, very good news about your lower extremities!

I was told by my neurologist that with my SPMS there would be no improvement and so on. Well, you have read that David thought otherwise and proved it with his variation of the Vanderbilt work, but the parts furthest from the brain are always the last to work I did feel the agonizing pain in my right arm after my third pulse, which was about the seven month mark.

This led to big improvements in my painting but my walking took months longer to improve.

Sarah.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

ChristopherJ

4 Jan 2021 11:06 am

That's quite a big corner that you turned. Congratulations! To have improved balance and feeling in your feet is great and then to walk that far is huge. All of your improvements are a 'holiday present' to all cpnhelp members!

I continue my journey with pulse #17 today.

Be well everyone,

Chris

I am a retired guitar repair/restorer after 35 years. I live in Colorado and am wanting to now restore my health!

30 Dec 2020
toliveagain