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 all!

Just received my 2 copies of MRIs and radiologist reports. How do I post screenshots of reports on here for poss help to decode what it all means please? Too long to type up yet short enough as a picture. Will obviously cover up personal details. Could do with some help to understand better.

Kiki

To be honest Kiki, I don't know. I know how to post pictures because my websites are full of my paintings, but your MRIs are presumably negatives. My scans shown on the Catalyst programme which can be seen on the home page here, were done by being held up against a window in my studio, filmed by the Australian cameraman. The MRIs are all larger than A4, but what you received in the post might be quite different, because of the time between yours and mine being taken.

Is there a difference in either of the radiologist's reports? All I know about mine is that I had a third MRI last year but there were no new lesions after eighteen years.

No new lesions is what you want to be aiming for. You will never have a completely clear scan because the lesions are scars I have a scar on my left thumb which has been there since I nearly ripped it off thirty years ago.  It has faded over the years but is still visible.

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.

There's an "image" link in the top of the message editor on this site (well, a little piece of hieroglyphics, but when I hover over it the label "image" pops up).  It should be some sort of way of adding an image to your post; give it a try.

Kiki and Norman, I have messaged Pinky about this.

When I clicked on IMAGES it came up that I had posted something nearly three years ago.  Today I copied an image from my own website and placed it in IMAGES, but it still reckons that it was one I posted three years ago.  I will take it off later.

Now, I took it off straight away, but I tried putting the same irrelevant image in a new blog post, it worked and then I remembered that the image to be posted needed to be copied  from somewhere already online, so where was the image of our house which was in my last blog?  I'll have a think and wait to here from Pinky, but you should be able to put your image in your own blog.

I do know from my own website though that an image takes up an awful lot of space compared to text. My site is thousands of times bigger than David's for instance and so costs much more.  We did used to have many more images than we have now though.

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, do you have an image in some format which I could either place in your blog or give to Pinky to do the same thing with?

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.

That sounds like a very good idea, if you can bear to look: I couldn't at first because I was horrified at what had been going on inside my brain, when I had never even had a headache!

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 all "recoveries"!

Just wanted to ask yous please if you too found yourself getting physically weaker and less able bodied during your CAP treatment? Ie getting worse until something clicked/a corner was turned where you then saw it physically go the other way/ improve rather. 

Or were you bad off before CAP and so stayed the same until the corner was indeed turned for the better and you started to improve physically?

Asking as I started off bad but in hindsight I really wasn't so bad and whereas I now - near 3 years in on treatment daily- am REALLY bad off physically . And this after MRI results showing no new lesions nor active lesions post having started the CAP.

Maybe my demyelined damaged areas in brain/ spine are just simply starting to show what truly happened to me CAP or not. Ie it was always going to go this way as a result of lesions in my system all these years( first symptoms unbeknownst to me being in 2006).

Kiki

Kiki, I really don't understand why, after having a scan showing no new lesions and no active ones, you are showing no improvement with your multiple sclerosis. Whilst I certainly had to work at my improvement, this would have been impossible without CAP.

In fact from the very evening I started on CAP, my recovery began: I was still able to walk  but that evening I had to heave myself early up to bed, leaving David to do the washing up and put my blinds down.  There I remained for about three days, just dragging myself next door to use the loo once in a while.  David didn't want to leave me there by myself, but I insisted that he did, because it was right in the middle of the holiday season, so a busy time at the hospital.

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 Sarah 

Me neither! I'm at loss really as to how to deal with it. I'm definitely worse and NOT just not getting better. Is it due to nerve damages showing effect, MS in a worse stage progression or my inactivity( bare minimum now) and so muscle loss and with it thr difficulty of being able to use body correctly/ as before when I seemingly was well?

I just don't know what to do, focus on or how to solve/ fix things.

Kiki

Kiki,I think that I must ask you about in what way are you getting worse - is it a physical thing or definitely a neurological thing? My MS started back in the late eighties with my right arm suddenly becoming paralyzed.  I knew that it wasn't physical because I knew that I hadn't done anything to my right arm and there was no pain.  Within about three weeks it was gone.  a few years later it came back, but again resolved itself. I have never had any pain with my MS many people do.

Do you do anything like Pilates or Yoga?  This would be a way of keeping active but in a gentle way.  You certainly have to concentrate on what you are doing with many yoga exercises.  Doing it in front of a mirror is a help because you can check that everywhere is in the right place.  Maybe do it when there are no children around lest they make you laugh too much when you are trying to concentrate!

Sarah

 

to be continued.................. 

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 Sarah 

I most certainly am in no way able to do yoga/pilates now. My ms started with optic neuritus in 2006 that gradually improved and just left me with one eye seeing less colours and not as sharp vision on own. I can live with that.

In 2011 I had bad tingles and loss of feel in my legs/ feet. That improved too to where I just had slight constant non sensation/tingles in both feet. Again I could live with that. After my knee op in 2018(2017?) I recovered well bar a slight footdrop on left side only. Had no idea why bt after MRIs I got diagnosed with MS and now Im far worse than ever before. I hold onto every surface to schlepp about, never walk without a crutch, cant lift left arm to shoulder height, struggle to use left hand at all, have spasm in my left hip that turns into pain, sleep and wake every 2 hours because of discomfort and pain, drag left leg and foot as I walk- unable to bend and lift leg up properly, loss of control in muscles left side of lower leg so awkward to keep foot in an aligned proper position leading to weak ankle. Fall over easily and lots of loss of sense of balance. Move so slow, struggle to get up from bed, chairs and sofas. Cant get to loo fast enough so have to plan ahead and go often in case I need it.I pretty much do all one handed now and need others to make me food, wash up and chop tougher proteins in smaller pieces- I only use a spoon or fork now. At times my left leg won't bend for me- it stays rigid like a metal bar and I have to rest long enough to try and will it to bend. I wear anti slip socks on my left food to get some traction power and not to fall when getting up from sitting. I dread any outing as I struggle to put easy slip on shoes and walk. I  turn around like a 90 year old in multiple steps and moves whilst holding on to everything. 

Kiki

Kiki, try this:  chair yoga with kassandra youtube - Search (bing.com)  

Next, in my experience non-slip socks can be dangerous.  I found that my bad foot could stay stuck on the floor whilst my good foot was anxious to get going, so I would fall over  Get  a pair of slip-on trainers 

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.

HKR Womens Slip On Trainers with Memory Foam Comfortable Walking Running Shoes: Amazon.co.uk: Shoes & Bags 

In my experience something like this, both lightweight and stretchy will be better than wearing non-slip socks.

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.

Thank you Sarah 

But I can't wear anything with much sole as Im barefoot on my good leg/foot and as Im mainly dragging my bad leg/foot sideways to "walk" anywhere...a rubber sole would make it impossible plus a big height difference. I can only just about put the sock on one handed, so actully putting a foot in a shoe then never mind lacing it or such would be an impossibility.

Kiki

But Kiki, I wasn't suggesting that you only wear the shoe on one foot: that would be silly. My experience of wearing non-slip socks though, in the days when my walking was like yours, was that the bad leg would get left behind and I could trip over.  Of course walking on our old floorboards, if there was a splinter to be found, I would find it!

You really would be better off not walking barefoot though, but if you are dragging you bad foot sideways you might end up pulling your shoe off.  How about trying to keep both your feet pointing forwards whilst sitting on a suitable chair.  Try lifting up one foot and then the other as though you were walking.  If you could watch yourself doing this in a mirror and concentrate on doing it correctly, you might find this a great help.  Do it after your chair yoga.

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.

Dear Sarah, Kiki and all

I havent posted for a while, just lazy. So good to hear from you kiki and see you posting here. Let me give the news from Sonal. She cannot walk even a step now and even in the house moves around in the wheelchair. Both her legs and her right hand also became useless more than a year ago. Now she is afraid of losing her left hand too,

 

But she remains cheerful and busy supervising household chores. My son working from home so around to help her and do a lot of chores besides his own work. It is getting cold here but thankfully the covid wave which peaked in April May is way way down. Fingers crossed.

 

Sonal has recently strated on the mushrooms adding these to her various supplements and continuing with antibiotics. But we are all wondering. It is now three years continuously with antibiotics and except for the first year when we thought she was feeling better, there has been no improvement. In fact 2020 there was a downslide quite a bit. It has now steadied again. But that may be the disease pattern.

Sarah what should we do? At wits' end. Hopw Kiki the mushrooms did you some good. But i dont understand if you have no new lesions, why arent you better? Any thi9ng the neurologist has to say?

 

Take care all of you as Covid seems to be raging in UK Germany and many parts of Europe. 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.

Hi Neena

Sorry- lost lots of emails so not replied to your latest ok. I'm in samish position as Sonal after 3 years. No improvements, only worsening so far more disabled. Ive kind of made the decision now to see year out on protocol and then most likely cold turkey quit it. Possible keep on with a few supplements still. And hope to find another way to heal. God knows how and where. Im really disabled myself now and I'm not feeling super about this all. Had hope, convictions and utter belief but think time has come to let go off this dream. Hoping to find another one still. 2022 looks to put me too in a wheelchair.

Love

Kiki

For Neena, Sonal and Kiki,

I am saying here publicly what I think. David has said that these antibiotics need to be taken for at least a year.  I took them for a year and then moved on to David's invention of intermittent treatment which involved taking the two antibiotics for two weeks with  five day pulse where you took all three antibiotics which could be at the end of the three weeks or sometime in the middle. The two weeks of taking antibiotics we gradually moved further apart from the last bout so then after taking them this way for three years, I just stopped.

This was just the way I did it but I can't say that this is the best 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 Sarah

I hear you and did same those few months I did indeed try intermittant protocol. I hadn't really improved enough to move on so reverted back to full time abx again. So seeing as I've actually just been going further downhill ever since- you think still it'd be a good idea to restart an intermittant way forth again? Any poss gains? I thought you were only really to move onto intermittant once you saw no more worsening?

Kiki

 

Kiki, yes, you are quite correct but I posted this for everybody to note. There is no point in changing to intermittent if you are still getting worse. I wish everybody worked the same!

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.

Dear Sarah Kiki and all

You are right. in each case disease progression is differenet and every human being responds differently to the same treatment. Anyhow Sonal is carrying on with full time CAP but sometimes her pulse gets delayed by a week or so because of some special holiday coming up or some other reason like she wasnt feeling uypto it. The last pulse she did for just three days -- first time as she always adid a five day pulse but feeling quite exhausted and nauseous by fourth fifth day. So I told her instead of delaying the pulse make it shorter, three or four days.

The thing with Sonal is although physically much worse off than when she started in March 2018, hshe seems brighter and all there and full of spark. But physically definitely worse off. Then she also got Covid inbetween and with whole family down with Covid those were very stressful times. 2021 has been better so far.

Take care all of you.

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, to my mind if Sonal is all there mentally, and I can't argue with that, having exchanged mail, then this is far preferable to being the other way round, physicallly better but driving everyone else round the bend.

Hopefully physical improvement will follow on, but this can't be guaranteed.

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.

Hello Kiki

I just wanted to ask if you are still vegan? 

I have recovered nicely using the CAP (grateful thanks to David and Sarah) - no new lesions for more than 10 years now though I still have some fatigue.  However, I had been vegan for several years (I thought it would be anti inflammatory)  when I started the CAP and I noticed a dramatic improvement in energy and many  other aspects of health when I started eating animal foods again about a year later.  There are quite a number of nutrients which are essential for brain healing which are absent or sparse on a vegan diet.  There is now increasing anecdotal evidence that long term veganism causes physical deterioration of all kinds and especially in the brain - check out the Vegan Deterioration channel on Youtube to see  what happens to long term vegans. You can see the pictures and story of what happened to me on that channel:  the title is "Confirmed Vegan the right way - still suffered". 

All the very best to you.

RRMs diagnosed 2008 (symptoms for 20 years). Also sinusitis, recurrent UTIs, IBS  Wheldon protocol began 31/7/09 Doxy 200mg, Azithro 250 3X week.  Supplements B12, D3 Vit C, multivit, Fish oil, probiotics, NAC, vit E, turmeric

Hi Agatha

Thank you for reaching out!! I only tried vegan for about 1 year- so no longer following that way. Though I still abstain mostly from red meat- simply because I just don't like it much. Unless its home made burger or ribs to be fair. Veganism didn't seem to make an iota of change for me. 

Kiki

Hello Agatha, long time no see.  I did look at your YouTube video and must say that you look so well in the last photo.  Now, I have never been a vegan, but was a vegetarian for a while after meeting David  This didn't last long for either of us though, because it was getting easier to buy free-range meet.  We never ate it more than about three times a week though. Um well, you have to add omelettes and Cantal cheese onto that!

So you have no new lesions for ten years now and I have not had any since 2003.  I hope that Kiki will shortly be able to join our ever increasing little band.  She certainly deserves to.

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.

This was only lasted for a few days, but then one  morning and I think that it was only three of four days, I woke up early and went down to make David a weekend pot of tea. I didn't manage to come back up stairs as quietly as I had gone down though because I had to put the tray down on every other step. Sitting up to drink my tea though, we both realised that I was speaking clearly again.

This was after less than a week  just on doxycycline, so was I getting better or were we both just wanting to believe it?

No, of course I was getting better, but I think that here we have stumbled into the problem of why some people show improvements so much quicker than others. Whilst I did feel that I was on the mend even before starting roxithromycin and certainly metronidazole  I still had a long way to go.

Kiki, do you feel that you are getting worse or just not getting any better?

I do think that you might well find that my days are months for you, but in the end you will  get there.

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.