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 Sep 2019 10:37 am

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.

Kiki

18 Sep 2019 02:26 pm

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💖

neenavyas

19 Sep 2019 02:29 am

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.

neenavyas

19 Sep 2019 02:31 am

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.

Kiki

19 Sep 2019 04:11 am

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

neenavyas

19 Sep 2019 05:48 am

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.

Kiki

19 Sep 2019 06:35 am

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

neenavyas

21 Sep 2019 01:27 am

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.

neenavyas

21 Sep 2019 01:40 am

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.

Kiki

21 Sep 2019 02:44 am

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

Kiki

22 Sep 2019 05:29 am

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💖

Sarah

22 Sep 2019 07:06 am

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.

neenavyas

24 Sep 2019 02:20 am

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.

ChristopherJ

24 Sep 2019 11:10 am

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!

neenavyas

11 Oct 2019 08:45 am

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.

ChristopherJ

11 Oct 2019 11:00 am

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!

Kiki

6 Oct 2019 12:06 pm

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

Sarah

6 Oct 2019 12:41 pm

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.

neenavyas

16 Oct 2019 03:39 am

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.

Kiki

16 Oct 2019 04:21 pm

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

neenavyas

17 Oct 2019 08:34 am

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.

neenavyas

17 Oct 2019 08:38 am

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.

neenavyas

6 Nov 2019 08:23 am

Dear Kiki

have been thinking about you even as I wait for Sonal to get better. Please please do not give up hope. You never know when your body is ready to improve. As I mentioned earlier I was reading Katman Rica's old blogs and it seems she was down 11 pulses before she started sensing improvements. So keep it up. Something good may be just around the corner. Not everyone is as lucky as Sarah or Lizzie to improve so fast and get early signs of surety that they are going down the right path of cure. So please drop a line and keep it up.

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 Nov 2019 08:29 am

An update on my journey or.." adventure" as a friend calls it!

I disappeared of the radar, this forum and away from friends for awhile. Needed to find my drive again and felt SO bogged under by what's felt like tsunami waves of die off debris floating about in my system causing many short circuits for me. Physically I've been deteriorating and still look like the ringer of Notre Dame as I walk. Mentally I kamicazied properly and I still feel somewhat in free falling mode. Life's handed me many weights to carry and plod on with so my own time to recover has been to say the least very hard to achieve. Being last on the list to care for has had it's costs! 

Long story short- I've felt what rock bottom feels like. I may very well be some time from getting off that place before an upward journey truly begins but I have now at least admitted the thoughts and realised so that's my first baby step. Leving my stubborn stance somewhat behind of pulsing on and on until I see the turning point being positive for awhile I've come to the understanding (with much help and advice from Sarah and DW) that now might be a good time to temp pause pulsing until the heavy load of die off debris and endotoxins accumulation gets shifted a bit and flushed out of my system. And with support and my own feelings of when time to restart pulses feels right again ie when physically I feel more stronger- I will jump on that horse of cure again. Meanwhile I'll keep up the daily Doxy and Roxy combo plus all supplements and activated charcoal.

I will now move more into having healthy detoxing foods and drinks as well as work on my state of mind and look into the wholistic thought patterns of own inner belief system and where I need to work so to  improve my own pattern of hinders/ obstacles I keep putting in place. This is very much a journey of Meds teamwork with inner thought pattern and belief system. I've spent so much of my life acting from survival mode basis and when one is surviving one cannot dream. Pure will power has lead much of the way. And as one cannot heal in the same place as one got ill it's time for some reflection time and game changer. A life time of habits and behaviour doesn't always mean it's the right way forward in your own evolutionary life journey.

Big thoughts and bit scary uncharted course ahead ...but I'm willing to find the better me

Much love💖💖💖

Kiki

Sarah

6 Nov 2019 11:42 am

And to find the better you, you will Kiki: I am so glad to see you write this...…...

Sarah xx

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.

Jan Figtree2019

7 Nov 2019 04:43 pm

keeping on, Kiki. 

 

Thanks for sharing,

Jan

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

neenavyas

9 Nov 2019 01:12 am

Kiki,

thats the spirit. Good to hear from you and never give up. It is a monster that you are dealing with. I know what it is like. Sonal cannot always get out of bed herself and on to the walker. She sometimes, not always, needs help. But we are struggling on hoping for the magic cure to begin. I am hoping at least she should be able to get out of bed herself and become more mobile around the house even if with the help of a walker. Even that would be a step forward.

If you were newly diagnosed when you started the protocol your neuro deficiency should not be too high. Of course you have to look after your child and do some heavy duty house work.

I was really concerned but feel better now that you have posted on the site. Do keep this up. Yes, maybe you need to clear up your system before pulsing again.

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

10 Nov 2019 08:25 am

Hi Neena, Jan, Sarah and Lizzie

I still thank you from bottom of heart for both caring and supporting me here on this journey! I wrote my post so to explain better to myself and poss others out there now or in future that this isn't a straight run home for all but that's OK still. Hopefully it'll have a samish positive outcome tho to us all💖💖💖

And Neena- re my neuro deficiancy: Im a bit in the unknown as to how bad it's been and become...whether there as part of illness having evolved or because of protocol and part of the die off debris accumulated...

I know I wasn't this bad or affected 7th of Jan this year when I started this path of ridding and curing.

Kiki

26 Dec 2018
Kiki