MediTest
Submitted by TandT on Wed, 2018-04-11 05:28

Hi everyone, Terri completed her 50th pulse yesterday, which was her third 10 day pulse with 10 day intervals. We built up to this with three 7 day pulses and a nine day pulse at normal intervals after reactions were virtually un-detectable by pulse #43.

We have tried to increase the Tini on two previous occasions and quickly had to back-track due to lack of recovery time between pulses causing increased weakness, so we find it extremely encouraging that this attempt sees no build-up of die-off or weakness.

The only place we are getting increased inflammation is in Terri’s left ankle, the ankle she badly sprained as a teenager, plus pain in both feet during pulsing,  is this the CPN’s last stand?

This is all completely tolerable and I feel it is good to see some increased but limited reaction to the increased Tini.

We would greatly appreciate any guidance as to when it is safe to progress to maintenance pulsing and how long the maintenance pulsing should last. Also, do you increase the period between the maintenance pulses as you progress?

 

T and T

Hi Terri and Trevor!

Image removed.

By the sounds of it, you have overtaken me, Terri! 10-day pulses are a massive achievement. You have done really really well. You say how many pulses you have done and the double duration but you don't describe how you actually are. So, how are you? How are you doing? What can you actually do compared to what you were three years ago?

In terms of anybody being able to give you advice, I think you both have earned your stripes and spurs. You are probably as expert as anybody else around here buy now. My guess is that you have come an awful long way.

As you say, the ankle is probably the last vestige of CPn; Custer's Last Stand as it were.

I know from your post that you take tinidazole, whereas I now take metronidazole. It is a known that metronidazole is a carcinogen. it is likely that tinidazole is too. That is the only pressing reason that I can think of why you might consider bringing the treatment to a close.

As I say, I really wish I knew more of how Terri was doing these days. Please do enlighten us?

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Hi Glen,

 

There's nothing earth-shattering, just very slow and steady improvement.

 

Before we found this site Terri's ability to walk had gone and she was not only loosing overall strength but here legs were stiffening, sometimes straight, sometimes bent and quite often both legs doing the opposite and this was getting worse.

The tremors in both arms made it very difficult to use cutlery, use a keyboard or write.

She no longer went through the night without needing the toilet several times and she didn’t sleep at all well.

She had become quite morbid and completely disinterested in life.

So, what improvements do we have? Well Terri isn’t walking but her legs (and back) have lost the stiffness, her calf muscles used to be solid all the time, she has the strength to stand under her own steam now and this alone makes day to day life so much easier.

She still has balance issues but they are improving and I am confident that when circumstances allow we will be able to get some good physiotherapy and get some mobility back.

I can’t remember the last time I had to help Terri with her food, she now has little trouble wielding a fork or spoon. She’s been wielding a pen too which is slowly improving.

Most of the time now she sleeps really well, rarely needing to get up in the night.

Probably the biggest improvement so far has been cognitive, I have the old Terri back, funny and quick witted, back on the same wavelength as me and now thinking about the future in a positive way.

We just need to work out when to go onto the maintenance pulse now and for how long.

T and T   

Optic Neuritis in teens. Diagnosed spms in 2001.

Started suppliments in Feb 2014 in readiness for ABX.

Started Doxy 17-04-14, Roxi 25-04-14, Full Doxy 02-05-14.

Started Tini 16-07-14

Getting Terri's cognition back must be so good, T&T, but I think you ought to ask David for his advice on this...................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.

High Sarah,

Yes it really is.

David's advise on when to swap to maintenance pulsing would be invaluable, the only detectable sign of die off from the extended pulses is now miniscule compared to the early days but CPN is still being killed. Today is four days after the last pulse and the inflamation in Terri's right ankle has already subsided and the inflamation in her left ankle is much reduced. The pain in both feet that extends from toes to shins is also much reduced from what it was during the pulse.

Just to confirm, there is no loss of abilities or extra tiredness elsewhere during or after pulsing now other than the, mainly left, ankles.

 

Thanks in advance David.


T and T

Optic Neuritis in teens. Diagnosed spms in 2001.

Started suppliments in Feb 2014 in readiness for ABX.

Started Doxy 17-04-14, Roxi 25-04-14, Full Doxy 02-05-14.

Started Tini 16-07-14

Send him a private message and he will reply very quickly!.......................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.

TandT,

this evening my husband hugged me, saying he knew I felt crap, because I can usually set a false smile on my face, but not today. Then i saw your post and smiled, for real!  How fabulous, persistant and downright obstinate you both are!  I’m so very glad for you both ... and everyone who needs to hear good news occasionally!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Thanks Jane,

It’s been a long and difficult road and we could hardly see any light at the end of the tunnel at times but together we’re getting there.

 

It sounds like you have excellent support from your husband which is invaluable and so important (I hope I don’t sound like I am blowing my own trumpet here), there might be times when you would happily give up on the protocol so you need your husband to keep you going.

 

Best wishes

 

T and T

Optic Neuritis in teens. Diagnosed spms in 2001.

Started suppliments in Feb 2014 in readiness for ABX.

Started Doxy 17-04-14, Roxi 25-04-14, Full Doxy 02-05-14.

Started Tini 16-07-14

Thanks sarah, will do.

T and T

Optic Neuritis in teens. Diagnosed spms in 2001.

Started suppliments in Feb 2014 in readiness for ABX.

Started Doxy 17-04-14, Roxi 25-04-14, Full Doxy 02-05-14.

Started Tini 16-07-14