MediTest
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

noticed you were online so I thought of saying hi. Kids must be back at school so better time management for you? Looking after kids always exhausting but great emotional compensation! How did your last pulse go? 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.

Hi Neena

Yes I praised the skies for back to school time!! I spent 2 days following doing nothing- bliss! My friends soon gathered me up for needed chat and cuppa. They now want to drag me out for a spa weekend away even in this my decrepid state- saying they'll dress me, wheel me around ie whatever it takes! Oh for the love of friends💖

Pulse was not much noted but I physically have become worse I feel. Poss due to over exhaustion looking after kiddies and caring! Pulse 8 starts this Friday and  it'll be interesting to see if symptoms increase or temp get better with it. Partners work abroad finally finished and he's homebound for this weekend so hoping for some much needed sharing of child care and someone else to cook sometimes🙏🤞

Kiki💖

Dear kiki

go with your friends fir a weekend. Great idea. Here is to best for the upcoming pulse! Sonal begins fourth pulse most probably tomorrow

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

by the way I was wondering whether your daily Copax injections are interfering with Abx? Maybe dr Wheldon can tell you. I remember Rica saying she stopped Avonex injections midway of protocol.

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.

Hi Neena

I stopped Copaxone injections as soon as my meds arrived and I began the protocol! Just stuck with them for that little while thinking at least it was something I was doing. Silly but true. For someone who rarely even took a painkiller before it really didn't sit well with me to self inject like a ( sorry for frank expression) junkie- that's what I felt like when doing Copaxone. As soon as I realised Copaxone was just like a handed out band aid/plaster mildly staving off what Doctors "knew" to be an incurable disease but end result would still be the end all of disease I felt tons better quitting it! At least now I've reclaimed power over my own life and I'm working on the underlying cause rather then the band aid/plaster route.

I've never happily just accepted ways before- always questioned and trusted own intuition! I'm sure glad of that personality trait now!😁

Kiki

That,s good Kiki

i suddenly thought of pointing out Rica stopped Avonex and my daughter in law Sonal has reduced some meds she was taking all these years -- Baclofen for spasticity. She possibly needs to get rid of it altogether, but by and by

enjoy the weekend with your friends and your partner at home

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.

Ps Neena

Dont forget I was only diagnosed Nov 2018 and started protocol 7th Jan 2019 so hadnt been taking any meds long for MS  before I gave up on Doctors prescribed Copaxone. Re Sonal easing up on other meds she's been on for poss while longer than I was please ask Sarah here or D.W. ok- they'll know far better the best way forth than me.

Day 1 of pulse 8 today for me.

Kiki

Yes Kiki of course. Good you found the protocol soon after diagnosis which should lead to a 100 per cent recovery!

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.

By the way Kiki

did your diagnosis happen not long after childbirth? Sonal was diagnosed in 2012, one year after birth of their second child. 

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.

Hi Neena

No I was diagnosed late 2018 but 1st symptoms appeared 2006 so 3 years after traumatic birth of my eldest who became severely disabled from birth. I'm convinced the overload of stress from all that plus extra pressures having to deal with day to day of disability did send me over the edge so instigated the MS.

Kiki

Dear Sarah and D.W.

What do we think of the Ann Rowling clinic in Edinburgh( part of the University)?

Seeing that J.K. Rowling just donated yet another multi million sum and the clinic( set up in her mothers name due to her MS) work on MS and other neurological degenerative disorders.

Clinical trials poss of this protocol? Like minded professionals work, backgrounds, opinions and thoughts on causation of MS? Just wondering what yous think that's all.

Kiki💖

Kiki, I looked up the clinic when it first started and again a few minutes ago, but they are still working with the idea that MS is an autoimmune disease, the dominant idea since the 1960s.

I did write to J. K. Rowling once, suggesting that she might like to donate to Vanderbilt but she obviously never did.

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.

Hi christopher

how are you doing? Just wanted to say hi. Must be into second or third week of protocol. Sonal just completed fourth pulse. Not any major issue. She felt very exhausted by the last day of pulse. 

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.

Hi Neena, Thank you for asking and your kindness! And good morning (7:45am here in Colorado) to everybody. I've got my cup of coffee and reading all the latest comments. After 2 months of doxy and azi, I am going to start my first pulse this weekend. Like Tufty, living alone has its pluses and minuses but I'm hoping for a lot more positives for her, me and anyone else in this common fight! Many thanks to David, Sarah, Mackintosh, Dr. Stratton and all members of the CPN forum.

Be well,

Christopher

 

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

Hi Chris

just noticed your earlier comment so you must be through pulse number one! Great. Probably was not as bad as you may have imagined. It wasn't for Sonal my daughter in law severely affected by MS. 

I noticed in Sonal,s case once the pulses start a kind of rhythm sets in 5 days of the pulse and then just 3 weeks to the next one. It seems to be happening fast yet agonisingly slow in terms of expectations of improvement which take much longer to manifest.

but you are on a positive path , a path to a cure.

to your health

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.

Hello Neena,

You are right, it wasn't too bad but I decided to make the first one a one day pulse. The next three days of fatigue would hit me in the early afternoon and I would have to take 2-hour nap which effects my night sleep plus makes the spasticity even worse. From your postings, I think Sonal and I are in a similar physical condition (wheelchairs etc.) and close to when we started on the abx protocol. I look forward to you posting her new improvements as I look forward to mine. The marathon continues...

Be well

Christopher

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

Anyone out there with good ideas or past physio exercises that worked in tandem/or post with following the protocol please?

I'm now near to start pulse 9 so fairly newbie I know but I also feel that my physicality re my affected left side has gone mega downhill ever since January start. I was deffo not as affected then and am pretty disabled by now. It probably hasn't help with me becoming more and more inactive. So now wonderering what else I can do to improve besides just taking the abx and supplements?

Any and old or new advice/tips much welcomed!

Kiki

Kiki, what I did both in tandem with the protocol and afterwards, still to this very day, is using my elliptical trainer. I have to do everything by myself so can either set various 'trials' or just do whatever I want and stop when I have had enough.

It exercises every part of the body but smoothly and gently.  I wouldn't be without it now.

I have always been reluctant to use an actual live physio, because they will more than likely be stuck with yet more auto-immune beliefs, so I decided to do it my own way.

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.

hi kiki

just wanted to connect to find out how you are doing. It must be good weather now and perhaps one more pulse down. Do keep in touch. 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.

Hi Neena

Thanks for reaching out and thinking of me. I'm really struggling now- feel worse and worse physically. Mentally I also feel weak and easily upset/angry. From being a very capable person not long ago to now rendered very disabled and non capable - it's a dark struggle. Yes I've done pulse 9 yet each pulse just feels like a chore in diary now as I'm neither seeing an improvement nor difference with doing them. Sad and blunt but that's how I feel right now. I'm at wits end as to how I'll fare further ahead. I feel my input on here now will just be too negative to others so I'm no longer really posting unless I seek certain answers. 

Love to you tho💖

Kiki

Maybe the MS just became more aggressive as you started the protocol. Rica Katman-- I was reading her blogs 

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.

Dear dear Kiki I was reading Rica,s old blogs and figured she was down 11 or 12 pulses before she was better. Cheer up for you found this site before you were really incapacitated. I worry all the time for Sonal whether this cure too late for her. But one can only plod along and hope for a miracle.

do keep in touch. Don't drop off in despair. It's common sense emotional well being will also play a role in a cure. Best wishes cheers

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.