5 Apr 2019
Author
Kiki
Title

NEWBIE- advice and experiences please! Protocol starting JAN 2019

Body

Hi all incl Sarah and David! I'm new to here. Just recently weeks ago I was diagnosed with intermittant relapsing MS. Seemingly it all started in 2006 with optic neuritis then 2011 with lower limbs tingly,/ numbness. I have been started on daily Copaxen injectitions. But with a severely disabled child Im struggling both physically and mentally. Please help with advice as to how where, who, how much etc to get started on Wheldon Way of treatment. I believe in going in for the underlying cause rather than just band aid stuff. Thank you! Kiki Bojanic

Comments

neenavyas

18 Mar 2020 12:08 am

Hi Kiki

how are you feeling now? Sonal has not been too good -- she puked a couple of days and was generally feeling low although she has receovered completely from shingles. But that must have taken its toll.

Yes corona is scary for all of us since many of us -- me certainly -- are in the high risk group -- age, hgeart issues hypertension, and yes MS is clearly not a healthy condition.

Take care, stay at home as much as possible. We are doing that in India as well. xxx

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

19 Mar 2020 06:52 am

David smuggled in some nurofen for me at the start of the week and luckily I go home tomorrow. 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.

Kiki

24 Apr 2020 11:00 am

So....

I'm on the last day of a 5 day pulse nr 13 today. Doing another one end of May ie I've then done full time meds  and pulses for over a year( i took 2 months out of pulses for some respite in case that helped. Though it made no difference to me at all I must say). 

I've increased my own physio program to twice a day and more reps. My yearly MRI scan shows since the diagnosis one that there is no active lesions nor more of any lesions. My affected areas were in brain and spine. 

Until Sept 2019 I plodded along with more and more hardship but I was still somewhat able. As of Sept my partner had to leave work and take over at home as I struggled too much especially caring for our disabled teen. I then took my foot more of the pedal and relaxed more ie doing less. Since then I walk ( schlepp about) worse, my arm and hand/ fingers are worse.I struggle with any distance walking and barely leave home now. So question is: if my MRI says I'm not worse off ie Ive probably put a break on the MS with the meds  then why am I worse physically?

I take all meds full time, 1 month tween pulses and take all supplements plus eased up on my more vegan diet to include odd chicken, eggs and butter( always ate the fish still)

Has the time come for me to stop taking full time meds and rather do the maintenance route with rarer pulses?

At night when in bed I can move my arm, hands/fingers and leg/ foot/ ankle so much freer too. As if nothing wrong with me almost. Baffling.

I feel I take that many pills I must be rattling when I move.

Kiki💖

Jan Figtree2019

24 Apr 2020 03:53 pm

Hey Kiki!

I just read your thoughtful post.  I have been thinking about many of the same things:

--When do I stop full-time abx?

--How do I step-down from full-time abx?

 

I just passed the one year mark for being on the full protocol abx (my first pulse with Tinidazole was completed on April 20th, 2019.  

I am planning on doing another 6-months of the full protocol.  Why?  I am not confident that I have killed enough of the Cpn to move to the intermittent protocol.  I worry about the Cryptic/Persister forms of Cpn in my body just waiting to re-ignite this infection.  So, I am going to continue until the end of October 2020.

Additionally, I have been thinking about the move to the intermittent abx protocol.  I’ve decided to just follow the recommended approach:

“The eventual aim is to give all three agents intermittently so that there is some respite from antibiotics.  This, the final leg of treatment, may entail a 14-day course of doxycycline and roxithromycin, with a five day course of metronidazole [for me, Tinidazole] in the middle.  This course is given once a month.  After several months the intervals between the antibiotics may be cautiously extended….”  

 

So, my possible course of treatment after finishing the full-time protocol will probably look something like this:

--November 2020:  Take all abx for 25-days with a Tinidazole pulse.  No abx for 5 days.

--December 2020:  Take all abx for 20-days with a Tinidazole pulse.  No abx for 10 days.

--January 2021:  Take all abx for 15-days with a Tinidazole pulse.  No abx for 15 days.

--Constantly evaluate how I am feeling (body and clarity of thought).  Noticing any positive/negative changes.  If no negative changes (a regression of gains for me is a return of hardening of skin/psoriasis coming back---growing/more pain from ankylosing spondylitis).  If no regressions, then:

--Stay on the 15-days abx with a Tinidazole pulse with no abx for 15 days.  Each month. 

After a few months of the 15-day abx protocol, I will begin to cautiously extend the time between the 15-day periods.

Thanks for reading.  Thoughts/comments appreciated.

Jan

 

 

Edit:   Going forward after a year on the C.A.P.  (04-26-20)

After thinking about my plan to continue on full-time abx for another 6-months, I spoke with my resident mathematician/statistics expert on what he thought “on the order of one year” meant.  (This is the recommended length of time for the full-time abx).  He thought it could (reasonably) mean 12 months + 4 months.  But when pressed about my thinking about 6 months beyond the 12 months, he didn’t think it was totally unreasonable, but it would probably be on the more extreme edge of what one could think of as “on the order of one year”.

After taking his thoughts under advisement, I am adapting my plan:   If I observe 2 out of 3 of the following signs before I reach the additional 6-month mark, I will move onto the intermittent protocol:

For me, the signs that the protocol has really killed much/most/significant amount of the Chlamydia pneumoniae bacteria are:

--Total clearance of Psoriasis on elbows (and it is already close to total healing). 

--No pain in lower back (Ankylosing Spondylitis), and no recurrence of the sciatic nerve track pain.

--More than half of the accumulated excess collagen is gone.  I estimate about a third of it is gone as of this writing.

 

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.

neenavyas

27 Apr 2020 02:04 am

Hi Jan and Kiki

Jan your plan to go intermittent after another 6 months or slightly less sounds reasonable. But what do Sarah and David think? If psoriasis gone completely from elbows that is very good progress.

And Kiki, you sound as if you are better, even if only at night! Were your nights the same earlier or not? That would be an indicator. Sonal should also be ready for an MRI once this coronavirus meets its end And then we will know. She hasnt got worse -- though there are sone bad days -- but not any better either.

A few months ago some glimmer of hope in the sense I mentioned she was able to clip her hair with her right hand. But that temporary fleeting improvement seems to have gone, vanished into thin air.

 

But in her case she was in such bad shape maybe she needs atleast one full more year of the full protocol. I this Boadicea said she did the full works for five years before going intermittent! And she did improve.

Love and 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.

Jan Figtree2019

28 Apr 2020 03:38 pm

Congratulations to Sonal on finishing one year of the CAP.   That is great news!

My psoriasis (on elbows) is still there, but much reduced after a year on CAP.  It's definitely shrinking, but not gone.  What I am looking for/hoping for in the next 6 months --or sooner--is a complete healing of the psoriasis.  I think of the psoriasis as a "canary in the coalmine" for how much inflammation (triggered by Cpn) is still in my body.  

I wish I could have an MRI to give me some insight into what Cpn has done/stopped doing to my body.  I am very interested in hearing the results of Sonal's upcoming MRI.  

We are having an "Excessive Heat Warning" this week:  temperatures will be 100F to 107F (37C to 41C) ... too hot for this time of year ....

Hopefully we will all see a reduction in COVID19 around the world.... we need a break ... I am worried about a fall resurgence at the same time as flu season.

 

Cheers,

Jan

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

neenavyas

1 May 2020 02:56 am

Dear Jan

Sonal's MRI is some ways away because we are in a lockdown. Even when imaging labs open it may be a bit dangerous to go there right now. One will have to wait till this pandemic peters out. So hopefully by end July August maybe even September. Who knows when Covid will vanish, if at all.

She is doing ok so far even with no major emprovements she is cheerful and busy with house and children -- mainly supervising as she cant do much physically.

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

27 Apr 2020 04:40 am

I went on intermittent after a year because to start with an mri showed that I had no new lesions. Apart from that though, I had been able to resume my art work because I had lost the paralysis in my right arm and my walking was slowly improving by using two trekking poles. My speaking had also gone back to its original crisp and clear mode and also my thinking, much to David's delight.

This might help you to decide.

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.

Kiki

31 May 2020 09:26 am

Hi all

Hoping you're all safe, happy and well!

I'm wanting to attempt moving on to intermittant meds now ie the maintenance program rather than fulltime like I've been doing so far since Jan 2019. Never having prepped for this time as was busy just doing route day by day I wanted to ask yous please as to advice of how to go about it ie what daily, weekly, monthly set up to follow please. I will  still be taking all the daily supplements as per usual and will do TINI pulses ( always done 5 day ones. 

So how to set up this and for how long to do this? So very much grateful for known, trialled and tested routes info!!!

Kiki💖

Jan Figtree2019

31 May 2020 09:57 am

Here's a link to David Wheldon's strategy to move to Intermittent Therapy:  http://www.davidwheldon.co.uk/ms-treatment1.html

You'll have to scroll down the page a bit, but I think it is fairly clear.

I haven't heard from you in a while, but you must be doing ok to move to the intermittent stage.  Let us know how it goes.

Cheers,

Jan

 

 

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

Kiki

31 May 2020 11:06 am

Hi Jan

I'm feeling a bit thick...but does the diagram mean:

Week 1- take doxy and roxy as per usual dose per day plus all supplements.

Week 2- same as above.

Week 3- ONLY TINI PULSE ( 5days) OR Doxy+Roxy and Tini pulse( 5 days)

Week 4- Take nothing at all ie meds, pulse or supplements. OR supplements ONLY.

???

Sorry- I am feeling rather silly for asking but also want to get it right.

Kiki

neenavyas

1 Jun 2020 03:36 am

Hi Kiki Jan

wonderful that you both will soon be on intermittent Protocol. Dare I ask Kiki if you are feeling better. Jan I know says she is certainly better. How are bearing up with the Corona pandemic? India on the verge of exploding with the pandemic.

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.

Jan Figtree2019

31 May 2020 05:41 pm

The way I read the chart/diagram:  Once a month your Intermittent Protocol will look like this:

Days 1-5:  Roxi + Doxy as usual

Days 6-7-8-9-10:  Roxi + Doxy + 5-Day Tini Pulse

Days 11-12-13-14:  Roxi + Doxy as usual

Days 15 thru 30/31:  No Antibiotics!---You are giving your liver a break.

 

Supplements every day.  No breaks.

 

Hope this helps!  I going to start Intermittent as soon as I can.  

Cheers,

Jan

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

Kiki

1 Jun 2020 04:35 am

Hi Jan

Thank you so much for your help interpreting graph. I'm still somewhat non the wiser as in I can't read and understand that little graph so understand it the same way. Is it just not a straight forward of each week being a 7 day week? So week 1 plus 2 meds route as per usual then add a 5 day pulse on week 3 which leaves week 4 without any meds or pulse? 

Kiki

Jan Figtree2019

1 Jun 2020 01:11 pm

Hey Kiki!

I have been staring at that little graph for months (it's taped up on my kitchen cabinet)!  And I have found it a bit confusing too.

Think of the Intermittent Protocol as 14 days out of 30/31 days in a month.   You need to "sandwich" the 5-day Tinidazole course between two rounds of Roxi and Doxi.  You will not be taking anything the last 14/15 days of the month.   This provides the break your liver needs.

Again, each month you will do a 14-day protocol, and you need to fit the 5-day Tini pulse in the middle of the 14-day spread---that's why I wrote out the days:  "Day#1, #2, etc.   

Count individual days, not weeks.

The KEY thing about the Intermittent protocol is that it is truly only 14-days out of each month.  Fit everything into the 14-days, and then stop all antibiotics for the rest of the month to rest your body/liver.

I think it would be useful to start the 14-day cycle on the first of each month.  This is probably what I will do.

After doing these 14-day cycles for 2-3-4-5 months, you can cautiously extend the time between these cycles.

Don't worry about asking questions.  I like questions.  If I don't know the answer, I'll just say I don't know and will try to find the answer.

 

I hope this clarifies it a bit more,

Cheers,

Jan

 

Another thought:  I just remembered I was going to do a slower "step-down" from the full-time protocol to the 14-day intermittent protocol, and I wrote about that in a previous post.  That was NOT the official route to go.  I just created a slower approach to getting on the Intermittent Protocol and posted the information.   Since I have continued on with the full-time protocol for a few more months (beyond the one-year mark), I will probably just step into the official 14-day Intermittent Protocol later this year.  Very sorry for any confusion that previous post might have caused.

Jan

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

Kiki

2 Jun 2020 07:00 am

Hey Jan

Awesome!! I totally get it now- clear as a bell!! Thank you for walking me hand in hand🥰

As my MRI showed no new nor active lesions and I'm 14 months past first Tini pulse taken I thought to try getting on intermittant and see what happens. I can always restart it need be. The pulses don't really affect my much now and I believe my muscle weaknesses now are down to me having let go of much physicality really . I'm constantly increasing and adding moves and reps now and firmly getting on with it again. Muscles needs actions or they wither daily. I'm excited to move on in phase but as I just finished a pulse I'm planning on next phase starting 1st of July as it'll be the right time and much easier to remember too as you say!

Thanks a mil for helping me see clearly!

Much love💖

Kiki

Jan Figtree2019

2 Jun 2020 12:57 pm

Kiki!  I am so damned happy for you!  The news about no new/active lesions is Brilliant!  I am very interested in how the Intermittent Protocol works for you.  Please keep posting about progress.  I am right behind you in a few months.

Returning the love with a BIG HUG!

Cheers,

Jan

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

neenavyas

6 Jun 2020 01:39 am

Dear KikI

no new active lesions is such great news. I suppose you have to focus on exercising your weakened muscles. Keep well and safe.

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.

Kiki

6 Jul 2020 02:51 pm

A mental note for my journey. 

I've decided to try moving on to an intermittant, "maintenance" program this July. So will do my 15 days with a 5 day pulse thrown in and then do the rest of July with just my usual supplements as I've done throughout. Whilst a change I've also reverted back to activated charcoal for mopper to see if any difference from Chlorella.

I do feel head clear but physically weaker since my start in Jan last year but then I also went vegan, entered menopause and pretty much ( bar weekends) single handedly cared for my 2 kiddos of which one being severly disabled, ran the household ship with all that entails. I'd also months before rehabed from a serious reconstructive knee surgery. So yes..I did work myself to the bone. And once all became too much and my partner quit work to help more I then relaxed too much so did less and less of physical efforts. Now the less activity felt great but also in hindsight meant muscles shrivelling too. 

I'm now firmly back on doing physio rehab twice a day and making more effort to be more active albeit with bit more of a hurdle now.

My 2nd MRI post diagnosis of MS the year prior shows no new nor active lesions after having followed CAP only and disregarded the Docs. recommendation of daily Copaxone injections ( ps. He still doesn't know I'm not doing the Copaxone as I want to remain in his good books for further scans!)

Today ie 6th of July I started my pulse nr 15    . 

Let yous all know what all feels like later on in the month when only doing supplements.

Kiki💖

Jan Figtree2019

6 Jul 2020 09:44 pm

Thanks for your update.... I'm really impressed that you have no new or active lesions after following CAP!

You also are a massively busy woman!  I am exhausted just reading what you have been doing.   I am also rehabbing my knee --not from a replacement, but from a fall injury.

I very much want to know how the intermittent/maintenance protocol works out.  I will be starting it as soon as my elbows clear of the psoriasis.

We are enjoying our 110F/43C heat....

and suffering with the overwhelming caseloads of Covid-19 because our _@#$%*&^_ president is an idiot.  

Cheers,

Jan

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

neenavyas

11 Jul 2020 02:30 am

Dear Kiki

good to hear from you/ Just yesterday I was wondering how you were doing and wanted to get in touch. Sounds good despite having so so much on your plate.

No news from my side. Sonal has completed twelve pulses and is heroically going on without any improvement in her mobility. Hopefully this year will bring some cheer. Her right hand is also getting affected now although intially within months of the protocol it seemed to have somewhat improved in flashes.

 

Take care. we are all soldiering on while avoiding the dreaded Covid. Love.

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

12 Jul 2020 07:44 am

Kiki, I never realised that you had quite so much change all at the same time as starting CAP! Maybe it was too much all in one go.

Becoming vegan would be very difficult to start with, making sure that you didn't go short of anything essential. Is all your family vegan :because if not, that would make things even more difficult.

Personally I eat a small amount of meat but only free range/organic, which means becoming a vegetarian if eating in a restaurant. 

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.

Kiki

20 Jul 2020 09:22 am

Dear Sarah and Lizzie!

Long story short...just attempted a maintenance meds route Thursday last week with idea to re start CAP meds 1st of August etc. Feeling much weaker tho its only been 5 days off meds so far. Still taking all supplements. 

Yous reckon I should restart the daily meds again or...

Could it be other reasons as to weakness like house renovations taking place ie I've got further to walk/ move about now  or is it a sign to restart meds and postpone maintenance program for another time?

PS. Also I noticed during last few pulses that come day 2 or 3-  I'd get an increase in strength and so achieve far more reps etc in my physio program and for that effect to wane tho as time goes by after pulses. What's that all about?!!!

Kiki

Sarah

22 Jul 2020 09:13 am

Kiki, it could be starting too soon or it could be the changes happening around you. Or it could be something else completely. The time to ask is when you have not been taking abx for at least two weeks, because nobody would ever start on intermittent protocol otherwise, and nobody ever would have stopped!

The first time I started on intermittent, I restarted maybe a week too early, but next time I managed a month without even thinking about it!

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.

Kiki

8 Aug 2020 06:52 am

A mental note for my journey 2...

So today is my second intermittant 5 day TINI pulse! Intermittant started 1st June where I indeed did 15 days of abx (+moppers) plus 1 TINI pulse with all supplements and then did 15 days of supplements only ( +mopper) til end of June. 

1st of July I did my 2nd intermittant wave(+moppers) so will do til 15th of July and today is 1st day of my 16th TINI pulse (+moppers).I will then again do 15 days of only supplements(+ moppers).

So far I've felt fine and plodding on with my own devised daily physio plan.

Today ie 8th July I also informed the pharmacy company delivering me monthly Copaxone injections for MS that Im taking a break for a few months prior to next MRI scan ( supposedly to happen late autumn/early winter) as I want to see what happens if I do. In reality Ive just played along with them and neuro Doc so I can have my regular MRIs and so stay in their good books! I havent actually taken the Copaxone since starting the Wheldon protocol ( ie January 2019) which still lead to the annual MRI scan showing " No new lesions nor any active lesions"! So take what you want from that result haha!

Love from Kiki💖

Jan Figtree2019

8 Aug 2020 10:41 am

I like your subterfuge with the Copaxone injections :-)

I'm glad your Intermittent Pulsing is going well, and that you are feeling good.

Cheers,

Jan

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

Kiki

8 Aug 2020 12:11 pm

Hey Jan

Why thank you so much for the yeay! Im still on tentative test ground but so far so....

Ps.i forgot to tell you re my choice of moppers. So first I had only activated charcoals for a long time. Then I ran out so tried the Japanese chlorella. And again I decided to go back to the activated charcoals as I like them better, they're cheaper and easy enough to just pop 2 before bedtime. I've just decided for myself to rather double dose them then rely on 1 only. Figure body has tons of die off debris to rid of anyways so why not!

Love Kiki💖

neenavyas

10 Aug 2020 08:44 am

Hi Kiki

You sound cheerful and looks like you are doing well on intermittent. Has the physio regime helped? would have I assume. Good to hear from the tone of your post that you are cheerful and looking forward to better times. Love

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.

Kiki

11 Aug 2020 11:45 am

Hi Neena

I know I now leave it very long between posts but besides world disorder Im up to it with mega garden reconstruction, an endless saga of piles of utter rubbish from our local planning officer re a much needed extension for my disabled teen. Been going on on paper only since end of March and there really isn't the need for it bar them flexing their powers to prove the jobs more than what it is. Tragic really as we as a family have to pay a heavy price for some " nonpenpushersinaforeverjobwiththecouncilsotheydon'tcare"!!!

It's harder for me than I let on as though I felt great for telling the pharmacy couriers to do one- I'm by no means stronger physically. Au contraire I feel more and more disabled week by week. Im sticking to physio so as to not give up hope and maybe that'll come to something before my body forgets the movements but Im just not sure why Im feeling so moving worse. Is it die off reaction or the natural MS progression from intermittant relapsing diagnosis. My MRI says no active nor new lesions after 1 year of protocol but Im far worse physically now then when I first was diagnosed Oct 2018. I started the protocol 7th Jan 2019 so I dont know why or how things have gone worse. Plodding along is all I can do really. I don't know what else to do or think seeing as I was so convinced and of strong mind I'd be far more OK by now.

Love Kiki

26 Dec 2018
Kiki