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

I'm very sorry to hear you are feeling more disabled after being on the protocol for so long.  I think a high-degree of stress can definitely make anyone sick.  And you are under an ocean of stress right now.  

I have some thoughts about your situation, but they are not in line with the CPN protocol.  Perhaps we could email privately.  I don't know how to send you a private message.  Maybe Sarah could help me send you a private message.

Cheers,

Jan 

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

I got several messages from you on this board, and replied with my home email.  I don't know why private messaging isn't working.  Maybe Sarah can help.  Sarah---it's OK if you give Kiki my home email address.

Thanks,

Jan

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

Of course it is Jan: I'll do it straight away!

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 Kiki

reconstruction work can be very very painful and upsetting. In 2015 I had major works done and it was hellish for about a year or more till the last worker left. But I must say when all is done and finished, the space is so much much better.

As I see it Kiki, you were lucky enough to find the protocol and start is soon after your diagnosis. That must be the reason why no new lesions. If no new lesions, then it SHOULD MEAN that the disease has not progressed and you will be better.

You have a lot to carry on your shoulders so the mental stress could be doing you in. Some say some half an hour of some form of relaxation like meditation helps. Relaxes all muscles especially the mind.

Here the corona situation is really bad. Each day that passes with no one ill with it in the family is a blessing. Plus work employment disrupted. Both my sons affected as well as Naresh who is struggling to pay wages to some 20 employees. Thats life. I am also hoping for the day when some light for Sonal who is completely dependent now and needs huge help even to move around the house.

Take care. 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.

Hey Kiki, Neena must be right. When I was hospitalized after coronavirus in January, I was sent for an mri and they couldn't understand why there were no new lesions. I didn't particularly want another mri, but at least this one included my spine, which was totally clear. I never knew that! I think that when I turned progressive it was just starting ti creep down my spine so I started treatment just in time............

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 and Kiki

Just to inform you -- and it may have a bearing on Kiki's woes. Sonal was doing relatively well with some very minor improvements and certainly no additional disability for a whole year from April 2019 when she started the protocol and March/April 2020. Then the cocona happened. Children studying from home, as well as her husband working from home and no travel which was a very good thing for her as she needs help and support all the time.

But increased anxiety because of children's studies and they being unable to go out to play -- stopping of some extra activity like music lessons. And worse Sonal could not get her massage lady and yoga teacher on alternate days as she used to. Disruption of that smooth routine has taken a big toll on her, both mentally and physically. She can no longer use her walker as her right hand has weakened considerably. She cannot even use it to eat.

 

That is why I wonder Sarah and keep wondering whether a change in the abx with a new antibiotic like rifampin added might help. After all although you had a nasty experience with this drug you did bet better and better. Of course in Sonal's case we found David's site after MS had progressed rather rapidly with many lesions in her spine as well. Now with the corona one if fearful of her going in for another MRI which is due.

Sarah forgive me for going on about rifampin! or is it Rifampicin? I keep thinking that it helped Katman and helped you -- you did get better although while you took it you didnt like it.

No word from Lizzie. Did she get her supply of abx I wonder. One saving grace in India is that is not a source of worry at all.

Please excuse the long reply. Take care. Small mercy that my family is so far free of corona!

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, there are several things wrong with this site: I can't now see Jan's email so can't pass it on to you. I have asked her to email it to me then I will pass it on to you!

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 did get Jans email from both of you. Jan via pm here in response to my initial one plus yours via email. I sent off a quick reply with my own email adress but no email back so far. All ok  and received by you Jan?

Thank you both for helping and trying.

Kiki

Hi Sarah

I did get Jans email from both of you. Jan via pm here in response to my initial one plus yours via email. I sent off a quick reply with my own email adress but no email back so far. All ok  and received by you Jan?

Thank you both for helping and trying.

Kiki

I have received an email from Sarah requesting my email address, and I sent her a reply back ---which she did receive.

Kiki--- I have checked all through my Inbox and Junk mail files, I cannot find an email from you.  Try one more time with Cpnhelp in the Subject Line.  If I don't get in a day, I'll send Sarah a couple of more email addresses to forward to you.

We'll get connected.

Cheers,

Jan

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