5 Apr 2019
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 Kiki, Sarah,Ā Itās goneā¦
Hi Kiki, Sarah,Ā
Itās gone away... I feel fine.Ā
Iāll let you know how it goes. So far:Ā fine.Ā
Ā
Bye!Ā
Xx LizzieĀ
Elizabeth Anne
28 Apr 2019 06:50 am
It was the third pulse forā¦
It was the third pulse for me and I was in tears.
Some people never get the pain though, but still get better: I don't think Mac did, uness she was keeping it to herself!Ā
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
Thanks for all this guidanceā¦
Thanks for all this guidance,Ā Ā Sarah. Itās not just me, but my family,Ā friends, colleagues and neighbours are braced for what might happen!
Elizabeth Anne
28 Apr 2019 12:48 pm
Lizzie, well, it is good forā¦
Lizzie, well, it is good for me to see that what happened with me is now happening with other people! Ā
When I was first diagnosed with SPMS and was told that there was nothing that could be done, David spent a few furious days trying to find something.Ā Less than a week later, he came home from work at the hospital with a pack of doxycycline and told me to take the whole days dose straight away.Ā That night, I felt strange and went to bed early.Ā I knew something was happening, and the very first thing to happen was that my slurred speech righted itself.Ā So I willingly carried on, a friend from up north having commented upon this.Ā Of, and my sister's partner as well, who said to her that a few days before, on the phone, I sounded like I 'had been on the piss!'
So, happy days!
Ā
Ā
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
23 May 2019 09:11 am
So today- 4th day post 3rd 5ā¦
So today- 4th day post 3rd 5 day Tini pulse I'm feeling an emotional wall coming on.
Just home from cuppa out with 2 different groups of gal friends. All know and support me re the protocal.Ā
Had a lovely chat, whinge and catch up. Sun is shining. Got minimal to get done. Plenty me free time.
And then it hits me.Ā
I know this is a long run treatment plan. I know it's repair on a cellular level. I know it's my best chance. I feel on aĀ roll and dedicated. Yet my physicality and constant weakness in just walking, moving about, simple hand actions that are sooo hindering still not improving-makes me question all.
Will it get better? Is this what will be my residue issues? Do I need to find some physioĀ Ā work to do alongside in order to get back to just a manageable state of being?...
Am I just being a dreamer with a vision that all will be solved in time?
Somehow after a lovely morning and lunch start dark clouds are hanging out above my head. The unknown outcome is making me doubt. Not seeing enough tangible results yet is concerning me. All the little internal things improving seem so little when on the outside I almost look worse and Im wondering when will I see the larger improvements?
So here's to my unexpected negative rant and big love to this space on the forum where I can safely express my emotions that no other beings can truly understand around me as they're not going through what I am right now exept for yous on here having gone through same or still going through this process.
Thank you for listening...in case you are...or were.
Kikišš¤
Dear Kiki Don't be soā¦
Dear Kiki
Don't be so disheartened. You haven't spelt out what are the small internal things that have improved. Perhaps those signal bigger improvements yet to come.
Obviously I have no personal experience. My daughter in law Sonal is yet far away even from the first pulse and she also needs improvements to enable her to even move around her house freely, which she cannot at the moment.
We are all hoping for the best. And it seems to be the last and only chance of getting back life.
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.
Thank you Neena for caringā¦
Thank you Neena for caring and egging me onšššš
Kiki
Kiki, Liebling, I know whatā¦
Kiki, Liebling, I know what you mean. I had thought my walking was improving, but no. It's not any better in reality.
I went through it all in my mind and I lookedĀ at the improvements -- memory, concentration, all the little aches and pains I had put down to aging gone, and the fact that people tell me I look so much brighter and sharper. I'm back working properly and earning like I used to.
What we need to do is get rid of the bug, CPN, then start to heal. Bits may happen at the same time - others, we just have to bide our time. We may not play tennis again, or go running, but we should improve.Ā
I'm feeling great, and hugely positive about all of this. I know I have to be patient, but that bastard CPN has been at me for at least 30 years, so the repair will take time, even once it'sĀ dead.Ā
Did you see DIYSOS last night on TV? Some poor MS 'victim' slowly dying. We're not like that. We're taking action.
xx Lizzie
Elizabeth Anne
ššššš Thank you Lizzie forā¦
ššššš
Thank you Lizzie for getting me
Kiki
Hi Kiki, How are you doing?Ā ā¦
Hi Kiki,
How are you doing?Ā
xx
Ā
Ā
Elizabeth Anne
Lying low really Lizzieā¦
Lying low really Lizzie. Both kids off school all this week. Partner working away and home help for my disabled daughter I thought I had prepped and planned to support us whilst I attempted protocol and curing myself has somewhat disappointed me and left me wondering how I can continue with more stress than ever around me and especially as physically I now feel like Im nose diving. All symptoms worsened and weaknesses far worse than ever before. My patience is so limited and my normal kindness and considerations are missing and I seem to aggravate peoples feelings tho they know my issues and work in progress. I want desperately to eliminate others "support" and do it all myself as always been the case before but Im struggling too much so can't. Currently I plod on but feel adrift in many ways.
Kiki
Kiki, this is hard for you,ā¦
Kiki, this is hard for you, but try to realise that the abx must be doing something. Just taking a few antibiotics would do nothing for someone who doesn't need them.
Shorten your pulses for now, that might help.Ā
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
Yep, it's hard and harderā¦
Yep, it's hard and harder than I imagined so thank goodness for my donkey DNA. Im just sad that tho I did everything to prep around me for this journey Im being let down due to really non understanding. If I told the world I have cancer and so doing chemo for a year plus the reactions sadly would be very different and so actions. Im sad Im yet again reverting back to the thought that I have simply to do much by myself and Just be grateful if and when help is there.Ā
I'll struggle on tho. And yes Neena I'd love my mama but she with my brother and family live in another country and the situation with my disabled daughter requires more than usual childcare. But thank you for thinking solutions- im much encouraged by your care!
Ps. Sarah- so if theoretically a "healthy" person did the abx as I am now, nothing would really change for them condition wise?Ā
Kiki
Kiki, yes: it would be likeā¦
Kiki, yes: it would be like taking sweeties!
Look, this is important, but what does your partner think of all this? I hope he is still supportive.
How are you between pulses? I thought maybe just take one day pulses for now, but every week or every two weeks. The benefits will build up, and it will be much better than stopping!
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
That's so good to know Sarahā¦
That's so good to know Sarah! I'm far more laid up on sofa between chores too tho so was thinking maybe weaknesses due to more of inactivity?
Partner onboard but no one really understands as not in my body to be fair. I felt fine actually during pulse. Better than expected but Ive seemingly gone so downhill as of last week to be fair.
Ps. Sarah- do you mean daily dose of Tini once per week and on then a weekly basis? For how long like that then?
Kiki
And why are you less activeā¦
And why are you less active than before starting treatment? The inactivity is because you are taking these antibiotics and they are making you knackered!
As for the pulsing, if you read the Handbook, many people have great difficulty in starting: people like Mac and I charged in and did fie full days on full dose straight off, but many people are better off starting more gradually. This is better than giving up.
So I suggested cutting back by taking a full dose but just on one day.Ā Then no more tini until the week after, or even the fortnight after.Ā These mini-pulses will soon add up!Ā Do it for as long as you like: it is your body, after all.
Kiki, you started this very soon after your diagnosis: out of every MS person here, you stand a big chance of being MS free the soonest, however you pulse.Ā Your twin Lizzie is doing amazingly well but still has the walking deficiencies to cope with.Ā So do I although I started so many years earlier.Ā I'm guessing that you won't have this problem.
Ā
Ā
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
Dear Kiki maybe you can talkā¦
Dear Kiki
maybe you can talk to your brother and your mama. Maybe she can come live with you for a while till your protocol starts showing results. Sorry if I sound too intrusive. But really it could help you focus on your own health for a while -- if only for a few months. Just to help you get over the bump vefore the protocol starts showing results.
Talking about you daughter's hair, find simple solutions. Get your daughter's hair cut very short so it will need no plaiting -- my daughter-in-law Sonal got her own hair cur very short so easier to wash and comb and keep tidy. That would mean one job less to do when getting her ready in the morning. I am sure you have thought that one out yourself.
Ā
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.
Dear Kiki I dont know yourā¦
Dear Kiki
I dont know your situation but could you get a sister or mother or a friend to come help for even a week? You could reprep the help for your daughter. I cant imagine what it might be but I do know that Sonal would also be completely adrift if there was no help around with the kids since she herself needs help. When my son Amit travels then either me or Sonal's mother is with her to help out.
I am sure it is a question of a few months more before you start feeling better. As others have experienced, things got worse before they got better.
Dont feel disheartened. Just look forward to a healthy next year.
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 Kiki, We can feel like weā¦
Hi Kiki,
We can feel like we're gropingĀ in the dark. We have the very realĀ weaknesses and disabilities., and yet where is the proof that this works? Well, we only need to look at the evidence of the people who've been throughĀ it. Sarah and Boadicea and Mackintosh. Just look at what happened to Jan when she took doxy as an antimalarial.Ā
There are more people on ThisisMS as well.Ā
I've read that as CPn starts dying it goes into attack mode. I knowĀ itĀ when walking and with lack of strength in my arm. But, at the same time, I see the benefits of the regimeĀ in mental clarity and positivity. Honestly, this has been my rebirth. I had just assumed my brain would die away, when I couldn't rememberĀ neighbours' names! But now I've reverted to being a know-all and interrupter...Ā
Take heart, Kiki. It's only been 5 months out of (for me) 30 years.
xx Lizzie
Elizabeth Anne
I love you being and lovingā¦
Lizzie ! love you being and loving being a know-aller and interrupter!! Thats what my friend said: that I sounded feisty again ie more like me haha.
Ā Im eager to upper cut this bug out of my life but also feeling a bit of trepidation as a simple act of plaiting my girls hair this week after breakfast proved an impossibility for the first time ever.( so heavens know how I'll be able to do school prep next week on own)Ā My hand simply didnt move nor felt an attachments to my thought command.
Kiki
24 May 2019 02:05 pm
Kiki, I think you areā¦
Kiki, I think you are suffering rom post-pulse blues. Any depression caused by the pulsing drugs does not vanish as soon as you have finished.
Ask your husband this weekend how he thinks you are now, compared to before you started.Ā Or do you have a good friend who you haven't seen in a while?Ā Husbands and good friends will notice things that you don't yourself. Ā
Apart from this, Lizzie was at the same stage as me: changed to progressive and very rapidly declining.Ā Call a halt then and people notice improvements very rapidly.
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
Possibly so Sarah!All Iveā¦
Possibly so Sarah!
All Ive known so far is that day 1-3 post pulseĀ still has me feeling extra tired and acc to my pattern on one of those days Ive usually ended up with a temper tantrum quite noticeable and much different to my usual persona.
Physically I just feel myself getting worse and to the point where Ive questioned myself whether the MS diagnosis has gone from intermittant relapsing to progressive.
On a much happier note a person that knows me from my capable days but mainly speaks to me on phone today commentated that I sound much sharper , with it and better just listening to meĀ on the phone.
Lizzie - I missed DIY SOS yesterday. Love watching that and the clever designing they do. I might see if I can find it on catch up out of interest.Ā
Kiki
Kiki,-- that's it:Ā Ā "Ā aā¦
Kiki,-- that's it:Ā Ā "Ā a person that knows me from my capable days but mainly speaks to me on phone today commentated that I sound much sharper , with it and better just listening to meĀ on the phone."Ā
Sharper, more on-the-ball. That's how I feel. For example, I had a problem with my laptop on Friday. Rather than just giving up and shutting it down like I would have 6 months ago, I fiddled around for a while, searched Google for solutions (on my phone), tried 3 of them, and fixed it. Then IĀ got back to work and finished the day feeling calm and in control.
The DIY SOS episode is very moving, as always. The poor man and his poor family, and the wonderful, fabulous response of his community.Ā
Separately, I'd be really interested to know if anyone's ever looked into what isĀ the progression of the disease amongst us MS'ers? From my very minimal observations (i.e. what happened to me and others I've heard of)Ā it seems the first symptoms are sensory deprivation such as lack of feeling in feet and legs, the perhaps optic neuritis and hot/cold mix-up feelings, slurred speech.Ā These come and go. (Ages ago, evening primrose oil fixed the sensory and speech problems.)
Then as the it gets more established it'sĀ mobility and balance, and strength. Starting with footdrop and balance, then general weakening of the right side. Mine isĀ definitely weaker than the left, and less deft. Foot drop is bad. My handwriting is as if the pen is extremely slippery to hold.
I don't know when the brain power started going but I walked away from my self-employed business about 2 years ago, after 2 years of doing badly, so 4 maybe 5 years ago?Ā
Since I started CAP the brain is right back to where it used to be. If things get better in reverse order, next my right hand will improve, then foot drop. My balance has improved quite a bit - it was getting worse.Ā
Does anyone have any thoughts on this?
Cheers,
Lizzie
Elizabeth Anne
27 May 2019 12:08 pm
Random
I donot yet have any tangible or concrete experience to add, except to say that canāt stop myself or my brain to look forward to changes, hopefully positive ones! The mind is such a tricky thing and for me at the moment , the perceptible changes are moment to moment, day to day... and I canāt helpĀ Ā but judge myself, and of course others,well wishersĀ force me to evaluate too... but itās nice isnāt it, when someone you havenāt met for a week, says oh you sound better!
perhaps we just put too much pressure on ourselves and expect certain changes... which can take more time... each body is different and thatās what we must try and remember...
like all of you say, this forum to exchange views is so wonderful.Ā
We are on a path, long and hard, but at least itās now going somewhere!
27 May 2019 01:37 pm
Sonal, you are the thirdā¦
Sonal, you are the third person in the last week who has commented about another person's remark about how much better they sound!
This is exactly what I found, back in 2004, trying hard to see tangible improvements, mainly in my, at the time, abominable art work. Out of the blue an old friend from up north phoned up and exclaimed about how much better I sounded, followed by my sister, who said that her partner had thought that I had 'been on the piss!' a phrase which at the time, I had never heard of!
Getting rid of the toxicity must be the first stage on the path to better things!
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
30 May 2019 12:57 pm
Sending sunshine
Hi Kikki and Lizzie--
I'm sending lots of sunshine your way (I've got loads to spare here in the desert SW)...
Cheers,
Jan
Ā
56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.
Well needed here in soggy UKā¦
Well needed here in soggy UK Jan!!
Kiki
1 Jun 2019 08:46 am
So...My friend from Brazilā¦
So...
My friend from Brazil who indirectly knows of 2 MS cases where both treated and fine now. 1 used to be in a wheelchair but no longer. My friend passed on the name of a Doc.Ā Tom O' Bryan ( functional medicin) and a Biocom machine doing biorezonance .. or something re leaky gut as reason to MS.Ā
I know, a bit higgety piggety info keywords but thats what I got sent via a whatsapp telephone call message.
Anything raise a flag or promt a response re these keywords on here?
Kiki
Not about MS but I foundā¦
Not about MS but I found this:
Completed Stratton/WheldonĀ regime forĀ aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.Ā Ā Ā Still improving bit by bitĀ and no relapses sinceĀ finishing treatment.
26 Dec 2018
6 days post last day of 2ndā¦
6 days post last day of 2nd pulse for me but no side effects so far. Not sure what that means- good or not. Hope it's the right way forward for you Lizzie!!
Kikiš