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

27 Dec 2021 03:26 am

Kiki, actually David always said the metro and tini don't have to be separated like the other abx, but if you are unsure about that you could start the day with a bowl of live yoghurt.

The two hour rule is to allow for people with slow metabolisms. How do you know how fast or slow your metabolism is?  Well, weight is one guide.

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

27 Dec 2021 07:28 am

Um, maybe not the three metronidazole at the same time as the other antibiotics because you don't want to throw the whole lot up! Tinidazole is far easier to take than metronidazole. Maybe take the antibiotics in two goes in whichever order. Who knows, eventually you might be able to take the abx altogether. I could with tinidazole and maybe I just wasn't brave enough to try with metronidazole, because that was early days.

After looking it up I would suggest taking the antibiotics all in two goes, one metro, then the other two later.  It is not important to keep all the levels up for long term treatment, but don't charge in un your first day and take three metronidazole and the other antibiotics!

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

12 Jan 2022 09:14 am

Hi Sarah and Neena,

Just brief update- I've not experienced any changes never mind improvements in regards to months of taking the mushroom supplements so in fairness I'm currently just finishing what I already have at home and then not buying more. I might revisit idea again but for now I'll cease use. I'm rattling anyways as is with amounts of supplements taken!

I also decided to swap Tini pulses for Metro pulses instead in January as a test. I only bought 4 pulses worth so lets see if that does anything. I had no issues taking it. I took the usual morning combo of doxy and roxy, 2 hours later I popped all 3 Metros and most supplements, lastly 2 hrs at least afterwards I took my pre/ pro biotics.

I did only feel slightly more sensitive in my tummy- so the need for bit more cushioning live yoghurts.

Kiki

neenavyas

10 Feb 2022 02:36 am

i am sorry for my long silence. My partner's brother died in London as he was single Naresh had to rush there for the funeral and other winding up stuff in the midst of the raging Covid in December. Then my older son's entire family came down with convid -- thankfully all mild . One thing or another was occupying my mind space.

I dont know if anyone else felt the same, but Sonal seems better off doing Metro pulses. For a year a she had switched to TINI, which was easier to take but that period also coincided with Covid pandemic and a worsening of her disabilities maybe due to a number of factors.

 

Anyhow no improvement for Sonal but she seems more energetic and a steadying of the current state. She is continuing with the protocol but sometimes gives a longer gap between pulses say four to five weeks instead of three.

She has not started on mushroom therapy as the same issue as KIKI that too many p[ills and supplements to deal with.

Sarah, what news from Liz? She seemed to have improved a lot, but no word from her after her trip to New Zealand.

Hopw all is okay with you Sarah. Take care 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.

Sarah

12 Feb 2022 05:18 am

Hello Neena, what a time you have had over the last couple of months, but I hope the rest of the year runs more smoothly.

With regards metronidazole and tinidazole, I found tiniidazole much easier to take, but I didn’t change from metronidazole until I had started on intermittent protocol.  I never took metro for .or than four and two thirds days at a time because I always started on a Monday but liked to have some wine at the weekend.  I could have carried on with tinidazole for longer and maybe the people taking tinidazole would  benefit from taking it for more than five days.  Maybe, if Sonal finds it easier to  take, she should try longer pulses or even taking it all the time. Now that's a thought: pulsing was started because of metronidazole being so tough, but tinidazole isn't so maybe people could take it every day. I'll think out the whys and wherefores of that idea.

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

13 Apr 2022 03:17 am

i am sorry for my long silence for no special reason except that feel bad that I have nothing positive to report on Sonal. I think the switch back to metro is good because she certainly looks better and more energetic, except when actually on the pulse.

But her standing walking or in fact any movement has not improved. Some time ago she lost most movement in her right arm as well so is in the wheelchair even at home when not sleeping.

I have this despairing feeling that so9mething is out there maybe in some rain forest that could help her but has not yet been discovered, maybe even something very very simple.

How are you dealing with David's absence Sarah and you Kiki must try the stem cell if offered. There was a lawyer in London who had this treatment in Israel and said it improved his condition dramatically for six months but then again the disease started coming up so back to square one. I think he has had the treatment several times -- very expensive. But for Sonal not worth the huge effort and cost and it maynot work at all for  primary progressive MS, which she seems to have.

What news of Liz. She was on the road to big improvement if not recovery. Sarah, any news?

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

13 Jan 2022 11:58 am

Kiki, it will be very interesting t see  if you do notice any difference with now taking metronidazole.  One way in which you might find metro easier is to split the two antibiotic doses like this:                     

1  -  doxy,roxy,1 metro

2  -  doxy, roxy and 2 metro

3  -  supplements including pre/probiotics

as long as you take the probiotics a good two hours apart from the rest, you can take some live yoghurt whenever.

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

14 Jan 2022 11:03 am

Hi Sarah 

I'm  also being bit cautious by just attempting 5 day pulses rather than continous short term use to see how things pan out.

Whilst on here....any knowledge re people actually having attempted stem cell treatment for MS in it's many varied stages?

Kiki

Sarah

14 Jan 2022 05:03 pm

Kiki, yes, that sounds quite sensible because unlike other people, I have never done metro for more than five days at a time.

As for stem cell treatment, have you looked at the stem-cell forum on thisisms?  Stem Cells - This Is MS Multiple Sclerosis Knowledge & Support Community

I haven't looked there since early 2019 because the whole site seemed to be becoming rather moribund but now there are a few things that I have never heard of plus a few more posts in the stem-cell forum.  I have had a quick look this evening for the couple of people who I remember were doing the treatment but can't find them.

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

27 Jan 2022 09:19 am

Hi all

Having followed recent threads about NAC, can anyone please explain why we all take it and what good it does us? And is there a better time to be taking it?

Kiki

Sarah

27 Jan 2022 01:18 pm

https://www.davidwheldon.co.uk/ms-treatment1.html

Kiki, take a look at this page of David's site, his schedule of treatmentt;

Not being an antibiotic, it can be squeezed in at any time of the day.

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

29 Jan 2022 04:51 am

Hi Sarah

It's just that in the threads NAC was mentioned kind of like a killer of Cpn and I thought it was more to protect our kidneys/liver etc from poss a large amount intake of long term antibiotics.  But then I'm possible wrong too and misunderstanding.

Kiki

MacKintosh

27 Apr 2022 09:54 am

I recall Dr Wheldon agreeing NAC could help kill cpn, but said it would take decades to clear it, if at all. So, helpful, but not the be-all and end-all.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Sarah

11 May 2022 03:28 pm

And why DID David Wheldon say that? It was because NAC only kills elementary bodies, which is fine if you only have very early MS, but most people with MS don't even know they have it at such an early stage, and if you have one of the Cpn diseases apart from MS, it is going to be even more difficult.

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

30 Jan 2022 07:40 am

Kiki, Boadicea is more right here. Over the years NAC seems to have been adopted as a kind of magic killer drug. In fact, although it d0es work on the elementary bodies to stop them reproducing, if you already have an epidemic which has moved on to stage two, this is not much help!

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

6 Feb 2022 05:53 am

So... 

Seeing as I'm only worsening,  no longer take Copaxone....my neurologist wants an urgent MRI scan done and depending on result may qualify for a UK stem cell treatment,  tho in his eyes if no new or active lesions show it probably wont make any difference and lots of efforts really. I may instead be put on KESIMPTA. In all honesty I'd agree to a brain surgery by now due to being in such a shocking state and no light seen at end of tunnel! My so far 2 pulses of Metro attempted has made no difference and I sadly feel Ive come to end of ABX route for me. Still have lots meds in house but is it wòrth pursuing anymore. ...

Any views in KESIMPTA?

Kiki

Sarah

12 Feb 2022 04:03 am

Kiki, I really had thought that changing from tinidazole to metronidazole might be the push that you needed. I could say that maybe two goes of five day pulses is not enough and maybe in your case it isn't, but I would have thought that by now you would have at least stopped progressing. Are you still getting worse or are you at  the point where you just aren't yeti getting better?    

I hadn't heard  of kesimpta so I looked it up. I don't know what to say except that at least you only have to inject yourself once a month. I think that you should at least wait until you get the result from your emergency mri to see what iß happening before you stop taking abx. Let us know what it shows.

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

12 Feb 2022 07:36 am

Hi Sarah 

Im deffo not stopping yet- just more unsure if the route is for me anymore. Scan booked for 3rd of March. I feel worsening as all I can judge it on is how weak my body feels, more achy crampy leg and hip plus shoulder on my affected left side and how I seem less and less capable of doing my daily little physio program- I now only do it once a day and even then not all of the moves I used to be able to do( and then I did all twice a day!).

I can only sleep on my back now, wake every 2-3 hours with a spasmed leg so need to get up and walk about to stretch it out and then attempt to lay down again with slowly getting the leg straightened out in bed again which mostly ends up painful. I wake and feel my left hand partially numb in some fingers. If I sit around too long- my legs feel tight, restricted and heavy which then makes it hard to get up again and walk about.

Im not comfortable anymore to even walk the max 10 meters from car to dentist seat next week so this Monday Im admitting defeat by buying a collapsible "oap/granny" wheelchair. I never leave the house bar dentist and mri appointment anymore nor wear outdoor shoes/ boots. Im stressing already at what footwear I'll be able to actually put on- I struggle with just putting a sock on!

Kiki

Norman Yarvin

14 Feb 2022 03:24 pm

Kesimpta is a new drug, so any long-term downsides aren't known yet.  It is of course an immunosuppressant, so makes the patient vulnerable to other diseases.  In particular, it's an antibody against cells expressing CD20, which is something done by the immune system's B cells.  Those are the cells that make antibodies, so this is quite a hefty blow to the immune system, even though for MS they use lower doses than they use for B cell cancers, where the goal is complete extirpation of the cancer cells.

Kiki

2 Mar 2022 09:30 am

Hi 

Kiki here again. Rather sad update for me as last week I bought a manual wheelchair for quick appointments and today ordered an electric one. I fall over a lot now and can't get up unaided. I have a MRI booked 22nd March to see what's going on so will stick to the protocol but after that and the results I have no idea what I'll have to do. It looks like I'm not curable as only gotten worse since first diagnosed. It feels truly awful to have to accept defeat- it was never my plan nor will to do. This is really hard to come to terms with. I feel very down hearted.

Kiki

Sarah

4 Mar 2022 06:36 am

Kiki, when you first started writing here, I thought that you would be one of those people who would sail through the treatment, and am so sad that this hasn't happened. I keep thinking that there must be something that can be done. I know that MS is generally considered an incurable disease, but I did go from finding myself hardly able to lift a paintbrush at all to being able to produce my best works just by swallowing those three antibiotics and being determined to get better.  I can't imagine that your determination was any less than mine.

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 Mar 2022 04:46 am

Sarah

I indeed fought for it 200%. 

I now feel its broken me physically, mentally and spiritually. Bewildered and at loss at what to do now and at what i could have done. Never imagined to settle with a life such as now. Im no good to anyone nor myself these days.

Kiki

Sarah

7 Mar 2022 12:30 pm

Kiki, this is how I felt in 2003, after having had MS since I finished at UCL in 1981 but very benign until the turn of the century, when all hell broke loose. David's treatment worked for me so well and so quickly that I optimistically thought that it would be the same for everyone with an MS diagnosis.

No, all that has been shown is that MS does have an infective root rather than being just an autoimmune disease. Unfortunately there are many different infections that could cause it, but that makes me feel so sad.

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.

26 Dec 2018
Kiki