25 Jul 2020
Author
Jan Figtree2019
Title

19th Pulse Completed

Body

                                 19th Pulse Completed

I finished my 19th Pulse yesterday:  Friday, July 24th, 2020.  A pretty easy pulse this time.  Some extra fatigue the last few days---just slept a bit more.
 

Updates:

Scleroderoderma:  Skin is continuing to soften and excess collagen is still receding.  More flexibility is returning--this was almost impossible before starting CAP.   Looking forward to restarting yoga and trying pilates when I can move better.

Comments

Ankylosing Spondylitis:  Some come-and-go pain at base of spine, but never long enough/intense enough to take NSAIDs.

Psoriasis (elbows only):  Improving; shrinking
 

--I’m still taking all recommended supplements/at recommended dosages or above.

--I am having “Protocol Fatigue”  …. Am really looking forward to moving on to Intermittent Protocol at the end of October.

 

Thanks for reading,

Jan

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Hi Jan, It's nice to hear from you and about your latest progress with Pulse 19. I just finished #11 yesterday and can relate to that "Protocol Fatigue" description. The last 3 pulses have been pretty tough. Like Neena has described about Sonal, I too have not had any improvements with mobility. Unable to do any physical exercise makes this my biggest concern to really getting better. Having a exercise bike, an elliptical trainer and a treadmill collecting dust not ten feet away from me as I write this is exasperating. On top of that, I only have a 3 weeks supply of abx left and no good source to get more!

Anyway, I continue to read yours and all other posts.

Be well,

Chris

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

We'll just have to keep pushin' on.  :-)

My daughter is up at RMBL (Rocky Mountain Research Lab) right now enjoying cool air and bumblebees!

Have you written Sarah to see about new sources of abx?

Cheers,

Jan 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Yes we have to carry on. Jan you seem to be improving. So you should ask Sarah and David about the intermittent protocol. But as you know Lizzie stopped after one year and had a sort of relapse. Hope she is better again.

Chris, I know Sonal also gets very frustrated but soldiers on. Every small setback takes her back and then she takes time to recover. She had shingles two or three months ago. That set her back. Now the pandemic has meant no yoga teacher, both children working online from home etc. Her own routine of yoga and massage has been disrupted. Her only exercise is really to be helped to to get to the dining room and trips to the bathroom. Of course she is active on her phone running her home by online ordering etc.

But I am very hopeful of better days to come for her and you Chris too. 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.

I am improving.  I wanted to wait to start the Intermittent Protocol until my Psoriasis had cleared.  Why?  Just because it is an external manifestation of how much inflammation is in my body.... It's just a marker.  I have watched others stop the full-time protocol and have difficulty.  I think my psoriasis is about 80% to 85% cleared... hopefully in the next few months it will have totally cleared.

I am thinking/sending good thoughts to Sonal---she's got her hands full with MS, the CAP and kids!  I hope she gets her yoga teacher back soon.  I have always felt better doing yoga---but there is no going to the studio right now. 

I think frustration can be a sign of improvement.... for me it is.  I feel like I "can be doing more" but am hampered by things out of my control --Covid-19. 

Take care,

Jan

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Dear Dear Jan

so good to know your psoriasis 80 % clear! wonderful. Surely the rest too will disappear in the next few months.

Yes I do hope that for Sonal the next few pulses may show some mobility improvement for her, even if a tiny bit. She has plasticity which bothers a lot, even when using a walker or walking with some human support, mainly her husband. The stiffness in the legs a big hindrance.

Yes I agree maybe you can continue full protocol just for three to four months more th en move to intermittent. But are you kidney liver functions ok?

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.

Hey Neena--

I don't know if my liver + kidney functions are ok.  I'm not going to the doctor to check.  Too much Covid around--not enough people are wearing masks/taking preventative measures.  A doctor's office sounds pretty sketchy to me (strong likelihood of being infected just being in the office).  My family is isolating/staying at home/work from home. 

Cheers,

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Jan, I agree with you. If a vaccine was released tomorrow I wouldn't go to the practice to get it. I'm safer here!
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.

I finished my 20th Pulse yesterday:  Friday, August 22nd, 2020.  A fairly easy pulse with some extra fatigue on a couple of days.

Updates:

Scleroderma:  Hard skin continues to soften/recede---really nice.  More flexibility is noticeable especially in neck and shoulders.

Ankylosing Spondylitis:  No pain at all this last month.  Nice.
 

Psoriasis:   Not totally clear, but continuing to recede.  Good.

 

--Decided this past month just to move on to the Intermittent Protocol.  I think I will continue to improve and can conserve ABX.

 

Thanks for reading,

Jan

 

 

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Excellent Jan: you do seem to be ready for intermittent protocol and you write very clearly about your progress. I did continue to improve on intermittent and beyond, my last improvement being just a month or so ago, after starting a out fifteen years ago.

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.

Fab Jan!!

Well pleased for you. I'm on 2nd month of intermittant but still tentatively keeping an eye on developements...

First month I thought I was better on full time CAP regime. This month I'm debating whether I AM  better off on full time regime but seeing as both months involved loads of extra poss stress due to house and garden work done with builders around I'm just not sure yet what caused me to feel weaker.

Like I said- I'm keeping an eye on this journey. I may very well try 3rd month going full time again to see if that truly works best still for me.

Fingers crossed you're in for a smooth sailing and all goes as planned for you!

Kiki💖