MediTest
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

Of course you know your body best Kiki, but I do know that Sonal did get worse, and in her condition even the slightest deterioration means a huge step backwards. But fortunately in her case that further deterioration righted itself and she was back to where she had started, although certainly with more energy and hope of a cure, and therefore overall more positivity.

You will of course never know where you would have been if you were not doing the protocol. Same with Sonal. I do believe she would have been far far worse because in 2018 we all saw her deteriorate and with a new low becoming the new norm in her life.

So please keep up the protocol. And do whatever it takes to keep your spirits up -- like some time out with friends. Take care and keep in touch

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.

Carry on Kiki

Just spoke to Sonal and each day I hope she has some positive news to share. But no she is more or less the same, but definitely more energy. Now past six pulses she still needs help most times to get out of bed, but is able to sit arouynd the house for more hours than before.

You too please continue with the protocol. Hope by the time one year is completed there may be some light at the end of the tunnel. I still keep thinking of Rica Katman, how she turned around from wheelchair to climbing ladders and mending barn roofs! absolutely amazing. Let us all keep our chin up. xxx

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,

I remember that Rica Katman also took Rifampicin for quite some time before she started improving. Is that very different from Doxy and Arizo? Any thoughts why she took Rifampicin and whether it acts differently. Should Sonal be put on it? and maybe Kiki too?

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.

Neena, my opinion is that Sonal should stay clear of it. Rifampicin was in Vanderbilt's one and only trial for MS and it had to be stopped because too many people dropped out: they couldn't stand it.

I took it for six months but only after I had undergone my biggest improvements: for all of the six months I thought I might be getting worse because it made me walk as though I was permanently veering sideways, amongst other things.  My next scan showed that I wasn't getting worse, but this time there were no big improvements like in the previous one, but would I have been able to improve more if I had carried on taking doxycycline instead?

Sonal could maybe try it after a year, but Rica is a much tougher character than me: all those years of farming goats.

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

I only thought of Rifampicin because Rica swore by it although she did say it was very very tough schedule because no food two hours before (and after?). You see Sonal's disability is severe, also like Rica she possibly has primary progressive. That is why I felt maybe she should follow Rica's way. But thanks for clarity. I see your point. Yes, Sonal should continue with her current protocol of Doxy Roxy plus pulses of flagyl at least for full year, that is till April 2020. 

Waiting anxiously for sure signs of improvement. But certainly her energy levels are up and I think her right hand is better as 50% of the time she has gone back to eating with her right hand (in between before starting the protocol, she was mostly using her left).

She still often needs help to get out opf bed on to her walker.

Take care and again thanks for the response.

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.