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

16 Jun 2019 03:44 am

Kiki

I was thinking you would have finished this pulse. good and well done. Here's to rapid improvement over next few months!

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.

Jan Figtree2019

14 Jun 2019 04:20 pm

Hey Kiki--

Have a wonderful weekend... I could do with some more sharp thinking.

Sending you and everyone some extra sunshine for the weekend:  it's 107F/41C on my patio... 

 

Cheers.

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

Sarah

16 Jun 2019 11:27 am

Kiki, so you now have a super sharp mind again!  Mine came back very quickly as well and still shows no signs of vanishing again, I am glad to say!

What is good about your sharp mind returning, and that of Lizzie, is that you have both done it with bought online Indian antibiotics, which I only had to rely on after a year, when my GP started getting worried about repeat prescriptions and I started getting worried about David losing his licence to practice.

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.

ElizabethAnne

17 Jun 2019 08:08 am

Hey Kiki -- so the interrupter-syndrome has hit you as well? Brilliant, isn't it?
We're back! Now, it's just being able to walk. Hmmm.  Jan, you sound so well. Good on you.

BTW, I think my car-sickness feeling has been the Biotin: 10gm x 2 times a day. I passed on it once or twice when I was in Spain and I felt perfectly well again. 
Now I'm back to the usual routine, so again a little bit queasy (but I don't care).

The protocol is working -- my mind is clear; I sleep (etc). My husband sees it clearly. 

Bye! Work to do!

xx

Lizzie

 

 

Elizabeth Anne

Kiki

17 Jun 2019 08:23 am

Haha Lizzie

YES to my surroundings annoyance!! Tho til my legs improve and I'm able to do my lethal roundhouse kicks again  they're safe still😁🤣😍

Kiki

25 Jun 2019 06:32 am

Yes! I'm alive and well tho still only plodding along. No major changes in physio. Lots of family events and situations in my life right now so been deep head first trying to sort and arrange.

On Monday 24th June I started my own little trial of 1 day (only) full dose Tini mini pulse per week in addition to the usual 5 day pulses 3 weeks apart to see what effect that may have on me.

Also due to help provided with my disabled girl I decided to bring forth pulse nr 5 to start 1st of July meaning there's only been 2 weeks between ending the previous 5 day pulse event. But it makes more sense due to help provided and when I'll be doing childcare on own. Partners away with work abroad for the first 3 weeks of July!

Wish me luck and if Im not responding much on here it's because life at home has taken over for awhile. I still clock in and read comments etc on here every so often.

Kiki💖🌻🙏

neenavyas

27 Jun 2019 03:11 am

Kiki

in fact a few days ago I almost posted a message to you since we hadnt heard in a while. Yes those mini pulses sound interesting together with the regular 5 day ones. Do let us know. Sonal is due to begin her first pulse anytime in July -- she completes 3 months of the protocol with Doxy plus Roxy on 10 July. Hope this new regime works for you. And good you have some help with your child. 

By the way since I have had a blocked stuffy runny nose and a cough due to mucous drip into my throat since I was 15 years old and arthritis since I was 42, and more recently clogged arteries -- a stent 15 months ago -- I have also started the CAP just three days ago with NAC plus 200 mg of Doxy. So far so good -- some probiotics but not much else by way of vitamins.

Carry on and you will meet success.

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.

ElizabethAnne

25 Jun 2019 10:49 am

Good on you, Kiki. I'm chopping and changing pulse dates as well to fit in with life events, and it seems good. I'm taking large doses of Biotin as well now, which makes me feel queasy, but it worked on Sara, so onwards!

Good luck xx

Elizabeth Anne

Jan Figtree2019

25 Jun 2019 12:24 pm

Great  job Kiki!  I'm very interested in what you think of your "mini-pulses"... I'm still evaluating my fourth long pulse.

Cheers

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

Kiki

3 Jul 2019 09:12 am

So..Kiki here again😁

Ive only really done 1 day ie last week Monday of my trial of "mini pulses" as of yet but it went fine . I could feel my usual emotional and physical "crash" on day 3 still and the waves of extra tiredness. Then this week Monday (1 st July) I started pulse nr. 5 ( the usual 5 day long one). So far so good. I actually dont feel as affected by it as been the case before! Not as tired, not extra weak...

My mind is FULLY switched on and Im annoying people again Lizzie🤣😁!

So let's see what the rest of the pulse week turns out like...

Kiki💖

ElizabethAnne

4 Jul 2019 05:55 am

Hi Kiki, the thing is, people can be so easily annoyed when they're talking too slowly and you have to interrupt. Jeez.

I found out yesterday that I have been forever making people think I was annoyed or bored. My friend here in the office told me she thought I was fed up when I finished with 'Bye.' She wondered if I had annoyed her?

I've probably done it here. Honestly, we were in tears of laughter! I thought saying 'Bye' was a polite and friendly way of signing off. You know -- bye, see you later etc etc. Oh no! I've learned it really it means: "Stop. Finished. Shut up. Get Lost."  

So, you lot: if you've thought I was brassed off or just rude... I wasn't xx

Um, Adios? Au revoir? A bientot? Bye?

xx

Elizabeth Anne

neenavyas

4 Jul 2019 03:11 am

Good Kiki 

sounds really good -- a mini followed quickly by a full five day one. Not every pulse will possibly affect you adversely. Sarah had earlier said some she did not react to much.

good to hear from 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

12 Jul 2019 11:59 am

Post 5th pulse now and 2nd week of trialing minipulse of 1 day per week.

Im not sure what to do really. Whether to persist with mini trial or not. I feel worse physically than ever. My left side has gone so weak. And its not even starting later on in day as used to before but its rather all day. My balance and walking is so affected I worry constantly when I'll fall over outside of the house. Dont want to go anywhere in public really as Im so disabled now. I find myself hiding away at home any time I can- cancelling meet ups etc . Even walking indoors proves challenging. Im literally the happiest asleep or laid up on sofa doing nothing. No muscles needed to work. Poss that the mini pulse made my real pulse easier for me as the Tini was no shock to the system in the same way as before but still...

I guess Im probaby best to give up on the mini trials, give my body time and rest to recover better and stick to the monthly big pulses really. 

Does it mean Im actually  getting better🤔? Im feeling Im acting and looking worse and worse to be fair as time moves on. Am now 6 months into protocol and was hoping to rather see more improvements by now. I know its early still but my mind is feeling dissuaded. Any thoughts welcomed!

Kiki

Sarah

12 Jul 2019 01:46 pm

Kiki, my thoughts are as follows:

If your MS was fairly stable before starting abx , you would probably be just the same if you had never started.  The fact that you feel worse indicates that the abx are doing something. 

Now, Lizzie, I seem to remember, was just about to tumble into progressive disease, or maybe had already.  My MS had been progressive for maybe a couple of years.  I was just at the stage where  could respond immediately and so it seems, was Lizzie.  If we had been progressive for years and years, change would have taken much longer, but if we hadn't got that far, well, how can such people know if they are being helped or not?  It is very difficult.  I managed for years without taking any treatment and could often not think that there was anything wrong with me.

I think it a good choice to go back to just the longer pulses.  Nitroimidazoles are not pleasant things, but if yu were doing the original Vanderbilt protocol, you would be stuck with taking them full time!  No wonder so many people dropped out of their trial!

My guess is that after the next six months, you will have forgotten that you were taking like this!

 

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

12 Jul 2019 01:28 pm

Kiki - just my personal view, but it sounds to me as though you're pushing the killing a bit too hard and not giving your body time to detox and recover in between.  The recovery time is as important as the killing. A lot of my symptoms, and walking especially, continued to get worse for my first couple of years of abx, until things gradually turned a corner. I struggled to tolerate tini and never did manage 5 day pulses at all. I did eventually do 2 or 3 day pulses more frequently though - every couple of weeks, but that wasn’t until much later on. I was certainly relying on crutches more and more for the first few years. But this week I’ve been walking around the Lake District as though nothing has ever been wrong, so there is always hope. 6 months in with your treatment is really nothing - especially when you consider how long it has probably taken to get ill.  Stay positive and hopeful. I really do know how challenging all this can be. x

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

ElizabethAnne

15 Jul 2019 04:16 am

Morning Everyone, 

Saturday was the same as usual - dragging my foot and very reluctantly going walking (i.e. sitting on a bench, hobbling to the next while clutching my husband, sitting, repeat). 

Yesterday was so different. I felt really good. I walked about a mile unsupported, then stopped for a bit at a beauty spot. Yes, still dragging my foot but not half as much. I then went back to the car, another mile, alone, and waited for my husband. BTW, it was he who first said -- "Are you walking better? It looks like it!" My balance was fine, my energy levels were great. I could have done more. (I use a walking aide- FES which helps foot drop, but still.)

When we got home, only a 30 minute drive, I climbed the two flights of stairs easily (relatively), then straight away started preparing food. I chopped onions using my weak right hand - no problem. SCREAM!!!

The difference was incredible. I don't know if it  has continued over to today, yet: all I've done is drive to the office and sit down. I'm slightly reluctant to test it, just in case, but I will in a bit.

I'll let you know how it goes.

xx Lizzie

ps - vitamin K2 large doses on Saturday and Sunday

Elizabeth Anne

Jan Figtree2019

15 Jul 2019 12:16 pm

Great news Lizzie!  

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

Jan Figtree2019

15 Jul 2019 12:40 pm

Hey Lizzie--

I forgot to ask:  what kind of Vitamin K2 are you using?  Is it Vitamin K2-Mk4 or K2-Mk7 or a combination of both?

 

Thanks,

Jan

 

 

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

Jan Figtree2019

16 Jul 2019 12:43 pm

overdose the K2!

Vitamin K helps your blood clot.  So you don't want to take too much.  If you take any blood thinners (prescription medications like Warfarin or a nightly aspirin) you want to be cautious in taking and increasing your dose of Vitamin K.  It's a balancing act.

 

Good basic general articles about Vitamin K:   

https://en.wikipedia.org/wiki/Vitamin_K  (as a reference librarian I know that Wikipedia is not the most authoritative resource, but I consider it a good starting point for research... double-check all references)

https://lpi.oregonstate.edu/mic/vitamins/vitamin-K

 

 

Please tell me what kind of Vitamin K you are taking:  there are a lot of kinds of Vitamin K (K1, K2-MK4, K2-MK7...etc.),  and the brand name and your dose/frequency.

 

For a frame of reference, this is what I take:

Brand:  --Carlson's Vitamin K2-MK4  (5 MILLIgram capsules)  OR 

             --Relentless Improvement K2-MK4  (15 MILLIgram capsules)

Dose:  --Carlson's:  3 capsules a day  OR

            --Relentless Improvement:  1 capsule a day

 

Important: 

It's not good to take vitamins singly... they work together:  the fat-soluble vitamins: A-D-E-K should be taken together.  If you take a high dose of one vitamin, you could, potentially, create a deficiency of the other vitamins.   But if you have something going on genetically:  a polymorphism that creates a Vitamin K deficiency, then you could take a high dose of Vitamin K while taking normal doses of A-D-E.... you're just bringing your body's level of Vitamin K up to normal while holding steady with the others (this is hypothetical).

Another thing to consider:   Many people tell me I can get all the vitamins I need from food, but this is emphatically wrong.  First of all, our soils are significantly depleted of many nutrients, so we are not getting what we need just from our diets.  Secondly, if you are sick, you probably need more than the most minimal amounts of vitamins and minerals to heal your body not just keep it functioning.  And in the case of doing C.A.P., you need robust levels (not toxic levels) of vitamins and minerals to rebuild your body as you are fighting and clearing a serious infection. 

For example, after some genetic testing (intially the minimal 23andme results, but in the last year a Whole Genome Sequencing), I discovered that I had Partial Biotinidase Deficiency---so that meant, no matter how well I ate, I would NEVER get enough Biotin to heal my body:  I HAD to supplement at much higher doses than the RDA.  And indeed, after I started high-dose Biotin I had a surge of better energy and healing.  Additionally, if I had never discovered and never taken the high dose Biotin while doing a very vigorous C.A.P., there would not be a permanent solution to my health problems,  I would still be very vulnerable to a relapse of Cpn as well as other infections.   These "holes" or "chinks" in my immune system --created by polymorphisms-- need to be filled constantly for the rest of my life.  High-dose Biotin for life.  

I wonder if Vitamin K is a chink in your armor, Lizzie.  It could be just a plain deficiency (caused by diet) or it could be a genetic cause... or both .... I don't know. 

 

Finally, there are probably underlying deficiencies in BASIC vitamins and minerals for people with MS (Scleroderma/Ankylosing Spondylitis/etc...) .  They could be caused by poor diet, genetic causes or a combination of both. 

I think taking at least the RDA, but not exceeding the TUL of all vitamins is important. This is what I do.   

RDA = Recommended Daily Allowance (in my opinion not nearly enough for robust good health)

TUL =  Tolerable Upper Limit (don't want reach toxic levels)

 

Bottom Line:   Lizzie, I am so happy Vitamin K has helped you.  In proceeding, be cautious about provoking deficiencies in related fat-soluble vitamins.   Introduce one thing at a time and keep a log so that you know what you are taking/how much when things go right, but also for when things go wrong and you have to back-track and try a different route.

 

Sorry if this is a bit jumbled... I just don't want to give you bad information.

 

Cheers,

Jan

 

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

Sarah

17 Jul 2019 10:02 am

Jan, I feel a bit uneasy about advising anyone to take vitamin K. I do sometimes take it myself, but only if. say, I will be going to the dentist and blood loss will be involved, because my blood is very thin and hard to clot. Most of the time, thin blood is good and sticky blood is not what you want, but when I want clots to form I take vitamin K, but only then.

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.

ElizabethAnne

17 Jul 2019 10:51 am

Hi Jan,

Your advice is really helpful, thanks. You know, I don't know if it's VK that's made a difference, or just the passage of time.  I took my first dose on a Saturday and then the next day was so much better. I've seen this in reverse, so why not? i.e. I went from being reasonably mobile to being hopeless, overnight, in Sept last year. 

I'm taking 4 x the RDA and shall cut it now, to 2 times. The thing is, I feel fine so I don't feel that I'm doing harm, but that's no guide.

One day, my CPNhelp friends, there will be qualified, trained re-hab folk to guide patients through all this, but with the notable exception of the GOD LIKE David Wheldon, it's just us, reading, trying and relating. 

Adios!

Elizabeth Anne

Sarah

15 Jul 2019 07:01 am

Lizzie, that is such good news!

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

15 Jul 2019 01:33 pm

Lizzie, do show off to your colleagues for a day or two, but don't, please, think that everything is done. Who knows, it might be, but since this site was started by Jim Kepner, in 2005, I have seen many people come and go. Some of these felt so much better after, say, eight months, that they didn't even need to finish a full year. Some of these have come back years later when they realised that they had stopped too soon.

You might have no C pn left, but you might have just one left in a far away part of your brain.  This may eventually come back to haunt 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.

ElizabethAnne

16 Jul 2019 03:36 am

Hi Sarah,

You're right, of course; I know I have a long way to go yet. I expect to be taking the Abs for ages and ages. My walking is improved, but it's no-where near back to normal -- I still need to use a walking aide. The right side of my body is stronger, but not equal to the left.
It was just the first real signs of progress were so thrilling, especially after walking had seemed to get worse, since I started. 

I haven't told my family, yet, and won't until things have continued to improve for a significant period. 

My feet are on the ground - the showing off was just the once! I don't want to become a bore...

Cheers,
Lizzie

Elizabeth Anne

Sarah

16 Jul 2019 07:14 am

Lizzie, my right side is still slightly less strong than my left side and my strength fades a bit in the evening but both are nothing likeas bad as they were.
Also I can put both feet flat on the ground to cut my toenails. That is a fairly recent improvement: they used to kick up when I tried.

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