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

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.

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.

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💖

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.

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.

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.

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.

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.

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💖

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.

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

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.

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.

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

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.

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

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.

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.

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💖

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.