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

Sarah

3 Aug 2021 02:59 am

Kiki, I am working on it as we speak!

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.

Sarah

4 Aug 2021 03:30 am

Kiki, the problem lies with us: the tinctures need to be approved by our regulatory authorities before they can be exported to here.

Bring back the European Union!

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.

Sarah

4 Aug 2021 07:33 am

Kiki, this is what you should do: you can buy all the mushrooms in powder or capsule form from Amazon and some health food shops and herbalists.

She also takes lots of high dose biotin, vitamin d3 of course and a few other things of maybe lesser importance. She also eats  a ketogenic diet, mixed with fasting, but again this is what she has found suits her and of little relevance.

Why not just try the three mushrooms in capsule form together with CAP, your normal diet and supplements? The fact that her mushrooms are made into tinctures rather than dried and ground up to put in capsules has little relevance.

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

5 Aug 2021 10:29 am

Hi Sarah

Yes I'm going to try the 4 mushrooms in capsule form. Already bought some and emailed you the link/site. Lets see what that does. As she dbl extracts from organic ones I was just thinking more potency, but I'm trialling it so will let you know any effects.

Nothing can make it worse anyhows now so worth a try!

Kiki

Sarah

5 Aug 2021 10:36 am

Good, so let's see how it goes!

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

7 Aug 2021 01:46 am

Dear Sarah and Kiki,

Yes do let us know Kiki how the mushroom capsules work for you. I suppose one needs to watch out at least three months? Sonal is now trying out a vegan diet. Just started two days ago. No dairy no eggs either.

Love to both 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.

Kiki

7 Aug 2021 05:43 am

Hi Neena

It's all worth a try for sure! I've personally gone back to non vegan diet- only really skip red meat now( just don't fancy it) and minmum dairy.  Not sure it made any difference for me. But being active as much as possible, using limbs as much as possible and for me ( really forcing myself as I don't feel much like doing it) keeping on doing my little twice daily exercise plan is making a difference. No matter the hour I keep doing them as when I don't I seriously get worse and my body feels worse in movements. I seize up, my body gradually forgets how to do actions or move with intent. The less you use the muscles the more they shrivel up and weakens you I find. So do encourage Sonal to actively up her movements throughout day. However small movements they may be. Step by step...My muscle mass now is so little I struggle to just lift my legs- so I force myself to build them up tiny bit by bit. Or at least not loose more! Muscles are the first thing to go when you're inactive and you really do need them to use your body better. Never mind the nerves I know but the brain can create new pathways( in different form to usual for sure, but still!). I've seen how conductive education did that for my daughter who got CP from birth. That education is brill for neuro damages so maybe look and see if you can find some where you are or even online exercises to follow. I've also looked up exercises for people having suffered strokes as again that has resulted in neuro damages.

Kiki

Sarah

7 Aug 2021 01:26 pm

Hello Sonal, Neena and Kiki, I'm not going to tell anyone how they should eat but personally I eat a small amount of meat and dairy and plenty of fruit and vegetables. Humans have always had a meat eating dentition, hence this must have been developed before we actually became humans.

I have never had a test to see if I am sensitive to gluten or anything else but I just know that if I try to eat a banana, I react violently against it. I always have, even as a baby.  My sister was a finicky eater when a young child but grew out of it but I still can't eat bananas.

Nicole Apelian was found to gluten intolerant but her way of dealing with this was rather extreme.  She follows a ketogenic diet and so eats very little carbohydrate, which she must know is bad, so she balances this with fasting.  There must surely be a better way.

The one thing in common with all the MS diets is VITAMIN D3.

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.

Sarah

10 Aug 2021 04:41 am

Also Sonal, it occured to me that you might like to try Nicole's mushroom mixture by buying capsules of Reiki, Lion's Mane and Turkey Tail, like Kiki.  Anything is worth a try!

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

21 Aug 2021 04:13 am

Dear Sarah and Kiki,

It may not be easy to get these mushroom tinctures here in India. Can you send me some links where I can buy and also the doses. Yes, worth a try. Do you know of anyone with PPMS for whom these worked. Please share urgently.

Sonal had a pretty bad reaction to her first Covishield Astra Zeneca vaccine for Covid. Her entire body was wracked by pain and limbs became very stiff, plus fever etc. It took four days for her to recover to her normal, wheelchair dependent self, but she has This was her first vaccine having got mild Covid in April.

 

Kiki have you had both shots and what were the two reactions like for you. Hopefully not as severe as Sonal, who also had a rash on her body on top of everything else. Didnt sleep for three nights, despite Crocin and Combiflam for body aches. Sonal is currently also on a vegan diet. She decided to try out for six months.

 

Take care and do get back on the mushroom tinctures.

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 Aug 2021 05:11 am

Hi Neena !

Yes I also had Covid and that sent me backwards in recovery! When I then months later got my first AZ jab I again was hit hard physically just like when I'd been ill with covid. That first night I found myself weak, limbs stiff, couldn't get out of bed on own, shivers, fever and tiredness all day. By following night I was better again. Come 2nd jab I took no chances so popped 2 Nurofens straight away and then as regular as allowed throughout the 24hrs. I was nowhere nearly as bad and 2nd jab deffo was rather uneventful!

If Sarah can share my email adress to you or vice versa I can show you the site I get the capsules from. Can't find tinctures here do gone for capsules rather. Or Sarah can maybe just share my email to her with you ok. Alls in there.

Kiki

Sarah

21 Aug 2021 11:44 am

Kiki, I never got that email from you, but Neena, you can get it all from Amazon for starters, in capsule form and from different suppliers. I think that Nicole only sells to the US, and since I only heard about her a couple of weeks ago, I haven't heard of anyone else getting better yet. But mushrooms are so harmless that it must be worth a try. the only benefit of tinctures as opposed to capsules is that the tincture is absorbed straight away and doesn't have to go through the stomach first, so theoretically it will start to work sooner.

Neena, unless Sonal really loves being a vegan, I think she might be better sticking with an omnivorous diet, but just cut down on meat and eggs.

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.

Sarah

21 Aug 2021 12:01 pm

Neena and Kiki, if you click on Add Private Message, you can both write to each other privately.

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.

Sarah

25 Aug 2021 12:44 pm

Kiki, for the umpteenth time, I will try to email you again. You do have a little ptivate message 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.

neenavyas

27 Aug 2021 10:13 am

Dear Sarah and Kiki

havent got around to buying the mu8shroom capsules but will do. Has anyone with acute MS benefitted? Do let me know. Who is this lady Sarah mentioned as having cured herself? Do you know her. Can any0one contact her on email?

But commonsense tells me eating mushrooms will not be the same as the tinctures or capsules as one would have to eat a hell of a lot of mushrooms to get any benefit.

Sonal only trying vegan for six months. But for the moment off meat and eggs even dairy. Let us see. The vagans claim huge general health benefits as do those on keto or other diets. I believe in general for moderation with meat and plenty vegetables fruit.

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 Aug 2021 04:17 pm

Neena, I think that you are correct about diet. Both vegans and ketorians would disagree 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.

boadicea

28 Aug 2021 04:41 am

Neenavyas - If Sonal is following a vegan diet, please do ensure she is taking adequate B12 supplements, as she will not be getting any B12 from her diet. Many of us do find we have extra need for B12, especially when treating, and there is a huge overlap of neurological symptoms from  B12 deficiency and Cpn infection.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

neenavyas

21 Sep 2021 03:50 am

Yes Sonal was also very bad when she got Covid and later with the first jab she became very stiff and was even unable to sit in bed with support.

Now it is more than a month since you started on mushroom capsules. Has it helped at all? Sonal already takes 20 pills or more a day and she may be reluctant to add 20 more. Even to keep count of what one is taking becomes difficult. But there is a possibility of a relative in London currently who may be able to bring back these capsules here.

So let me see. This Lion's mane etc are they of different strengths? Sorry to keep bothering you with the same info again and again but my head is not entirely right these days. I am helping to organise medical help for a cancer patient currently.

 

My email is neenavyasatyahoodotcom

Please feel free to write any time. 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

21 Sep 2021 10:38 am

Hi Neena 

No problem all. To be fair I think its too early to say really. The capsules only varie in type of mushroom and its dedicated found purposes. I bought an extra large pills/meds compartment box/ pill dispenserary with wallet for all my medicins and supplements from Amazon. It has 4 compartments per day for the whole week, every day labelled. All fits in there and I refill everything every Sunday. Might be worth getting for Sonal too.

Kiki

neenavyas

21 Sep 2021 03:58 am

Thanks Sarah,

Sonal does take her vit D3 plus B12 etc on the protocol list and other supplements. She has never tested for gluten or dairy other but has never reacted adversely immediately to either.

But she seems to have decided to try vegan. She does take a lot of tofu and flax seeds etc.

I will try and persuade her to add the mushroom capsules and see how it goes. She has also given up on tinidizole and gone back to metro although that more difficult to take. We felt she had teeny weeny improvements when she first started the protocol, but then several things happened. She changed to TINI, her therapist stopped coming because of Covid, she got Covid as well as family so whole month full of tension and so on. Kids at home exams being taken from home and you know generally less rest and peace and less time for herself.

Thanks for everything. Keep well. love

Neenai

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

16 Aug 2021 03:46 pm

Has anybody tried any of these supplements yet? They do sound quite promising, but being pretty much cured of MS already there is little point in me trying them from an MS point of view.

This lady apparently had severe MS though, and now has managed to cure it by taking this selection of mushrooms. I don't think that the fact that the mushrooms were made into tinctures has much to do with it. The mushrooms might end up more concentrated as a tincture, I don't know, but you could just take a few more capsules.

It must be worth trying, like biotin, because both are harmless and certainly inexpensive compared to big pharma MS drugs.

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

16 Aug 2021 06:02 pm

Hey Sarah

I'm currently on week 1 of full recommended treatment (6/day) dose of Lions mane capsules and full recommended prevention (4/day) dose of Turkey tail , Cordyseps and Reishi capsules. Looks like Lions mane is really THE one, so trialling that one max first. Doses are the recommended ones from that site I emailed you ok. I may very well move on and get ones from Amazon later and so doses might differ. I'll probably give it 3 months or so first to see if I experience any changes or such before I share results. Maybe it'll work...maybe it won't- all worth a try! I am really bad now and super weak. Seeing movements diminishing weekly in  left hand,arm,foot and leg. Had a dentist appointment my partner took me to this morning, and honestly I schlepped it like a road kill! Any next outing- which will be months away- it looks like I'll have to surrender and buy myself a wheelchair as a disabled person. It's my ultimate surrender and feeling of failure! Only less than 4 years ago I was hard at work in the dojo doing mixed martial art and kickboxing 3 times a week....

Now, my 90 year old Father in law can live more independantly and move about freer than me.

Feeling pretty crushed.

Kiki

Sarah

17 Aug 2021 02:30 am

Hello Kiki, as you said, and knowing that it has worked for Nicole, it is worth a try. It would be nice to know how long it was before she noticed that her progressive MS was getting better; with me and the antibiotics I had the evidence of another mri scan after six months and now of course, after the mri I had last year after my attack of delirium caused by covid are pretty solid evidence.

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

19 Sep 2021 03:48 pm

Hi Sarah,  Boadicea, Norman and all!

Just a quick question.

Seeing how I've gradually just gotten worse physically since I started the protocol in Jan. 2019, where footdrop in my left foot was the main concern. And near 2,5 years later I'm now having difficulties including severe weakness in my whole left side such as: not able to use my left arm,hands and fingers much, I struggle to even lift my left foot when walking, I never walk without a crutch or even holding on to every surface so as to not fall, actually fall often and cannot get up unaided, struggle to get up from sofa and chairs, permanently have hoodies on so I can rest my half dead left pirate arm in a pocket or else it'd just mainly dangle down, my left hand and fingers often curling up into a fist I have to prise open with my other hand  sleep bad as I cannot re position myself  easy and have constant cramps/spasm in my left leg/groin when struggling to straighten it out/ our fold it up in fetal position. I cry most nights as it gets so painful with the cramps. 

Did yous also experience similar as you healed with abx? Or is it simply not right that I've gotten so much worse rather than improved with the protocol? I'm wondering too if my medicins ie antibiotics simpy were duds/old and potent less. I almost feel like I've just not taken any medicins at all and so just naturally have progressed from an intermittant relapsing diagnosis to a secondary progressive status.

Please do tell of your own experiences with MS status if possible. I just don't make sense to myself anymore with how much worse I am now compared to pre start of protocol.

Kiki

 

 

 

Sarah

19 Sep 2021 05:00 pm

Dear Kiki, I had relapsing remitting disease for about ten or eleven years before it became progressive and I started the treatment only a couple of years after that. This means that my MS started in my mid twenties but for most of those first years I hardly knew that I had MS, apart from two episodes where my right arm became useless, but recovered both times within the month. This shows how MS is so different from one person to the next.

When my MS had obviously become progressive David was really worried and started to look for a treatment.  He was always of the belief that it had an infective cause because of the people he had met whilst in training.

I started to feel something happening almost as soon as I started on doxycycline, but during m my third pulse of metronidazole I started to feel the very worst pain in  my right arm that I had ever felt.  It was bone crushingly bad and it had me in tears for much of the day.  It left off after the pulse was finished but returned for the next one.  But only  for those two pulses; I seem to have found a cluster of Cpn in my brain which the antibiotics really had a go at.   I had some slight pains for a few pulses after that but nothing major.

Kiki, I  really don't know why you are so much worse now than when you started.  I keep thinking that it won't last and that suddenly you  will start to  get better, like Boadicea.  You also have to bear in mind your elder child, who must prey on your mind.  This won't make things easy for you.

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.

Norman Yarvin

19 Sep 2021 09:27 pm

Dud antibiotics definitely exist.  There's a good podcast on generic drug fraud at

https://peterattiamd.com/katherineeban/

and that's for drugs sold in US drug stores; if you're getting them off the Internet that adds another layer of sketchiness.

There are also other brain infections besides Cpn.

I've always had a "herx" sort of reaction to starting antibiotics, though it of course diminishes as there's less and less to kill and eventually becomes imperceptible.  Sometimes that's just been a feeling of tiredness, which others might attribute to some other cause; other times it's been strong.

At any rate, yeah, after two and a half years it does seem like it's time for something different.

Sarah

20 Sep 2021 02:35 am

Norman, people have different ways of reacting to various things, including drugs, so please don't tell Kiki that after two and a half years of CAP it is time to try something different. It is not your place to do so. Even David, a consultant medical microbiologist got to realise with some of his patients, that some people like me improved very quickly but others took much, much longer.

Incidentally, my prescription antibiotics all were made in India, just like the ones I started buying online, including the sky blue roxithromycin.

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.

Norman Yarvin

20 Sep 2021 11:27 am

Oh, I didn't mean she should give up on antibiotics; I would have hoped my earlier responses on the other thread made that clear.  Escalating them seems like a better bet, or just trying antibiotics from different sources.  Even if it isn't Cpn, it's probably some other infection; the mainstream "autoimmune" party line for MS is implausible, since genes for autoimmunity that were that bad would have been weeded out long ago.

After they found antibiotics that cured tuberculosis, they also found that a bunch of things they had thought were tuberculosis actually weren't, since the tuberculosis antibiotics didn't work on them.  Crohn's disease is one such: it probably is still an infection, but a different one (or several different ones).  I wouldn't be surprised if the same thing happened with MS.

26 Dec 2018
Kiki