I'm almost cooked

Submitted by Moggie on Mon, 2016-06-20 06:09

Jeez, how time flies. I ramped up pulses to every other week and have now done at least 24 and will start another this weekend.I r        eally think that I have just about done it. I remember being told that I would finish with what I started with and i am breaking out in patches of psoriasis and that is what I first had. M    y MS - balance is still off and my eyes are still damaged. Rheumatoid - my joints are much better, my knees are still deformed but they are working. I have started to lift weights and I have been able to do the gardening this year. I am walking without my stick most days too. I have more energy, I can focus much better and I feel well mentally.

I plan to stop abx in August after 4 more pulses. So do I just stop taking all the abx or do I have a winding down period? I will keep taking all of the supplements until they run out and will then keep taking the ones that I have to ie N.A.C and the ones I want to ie tumeric so in total it will be NAC, vits d,b complex and b12, biotin, turmeric and evening primrose oil.

I have also been having advanced physio with the NHS and would recommend it to other Brits. I have hydro-therapy followed by occupaational therapy and then physio. It is a group session twice a week for 8 weeks. It has been amazing. My shoulders and back used to hurt all the time, now, I can move and swim again.

Last word -I saw my MS team and they dismissed my improvements as " an euphoria stage that is usually followed by a relapse". They refused to give me a MRI as they only do them when somebody has a significant relapse. Don't think I'll be bothering with them again.

You, my dear, have just made my day.  You also nearly ruined my keyboard as I snorted my iced tea when I read your comment about the 'euphoria stage'.  (My euphoria stage has lasted about eight or nine years now.  I must be exceptionally good at deluding myself.) 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi aMac

8-9 years is good for me to hear. Every health professional thinks I'm mad. My physio told me that if I'm still well in 10 years to patent it!! The occupational therapist to told about his wife dying of..... yep, you guessed it MS. I'll not be wasting any more breath on them.

DW I had read your paper and recognize it in friends. I never understood it before then. I also hadn't realized that that is what the MS team think has happened to me.

Moggie, Tell that physio Vanderbilt University already beat you to it, then published it freely, for the benefit of all mankind.  And it worked!!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hey Moggie!


I too am euphoric.  Firstly, I became very happy when this treatment started to work for you and you slowly but surely began to get well.  It is rather a pity that I no longer dive (hyperbaric oxygen) with you on a Monday evening; not only do I miss our chats, I regret not being able to stare in awe at the gains you have made.  That pretty girl that at one time could not lift a dozen cans of coke is now lifting weights.  Yes, euphoria may sound like rather a strong term, but I don't think that it is any overstatement. I am both euphoric and proud. I am proud to say that I know that girl that's well down the road to getting herself well.  Whilst I am absolutely sure that every single person on this site is over the moon about you getting well, I am confident that nobody is as pleased as me.

Before you started this treatment, I worried that in getting worse before you got better, you might lose the already compromised sight that you still possessed.  I am so glad that it has been win-win all the way through for you.

When you are in the hyperbaric chamber breathing pure oxygen, you are not only confined with people that have MS but with people that have arthritis and other "Autoimmune" diseases.  You and I have both sat there and thought the same thing.  I would love to have gotten well - not just for its own sake - but so I could have said to the others "Hey, look at me.  I'm getting well. Follow me … catch me if you can!"  Regrettably, I am not in a position to say that; anybody can catch me now (unless I am scooting along at 100 MPH in my new chair).  For you, you must feel amazing.  It must be wonderful to be able to start to feel well again but, at the same time, very confusing to sit next to people that will not follow.

Until last September, I was registered under the Gwent MS team.  I saw the MS nurse once and didn't bother again.  I never bothered going to see the neurologist after I received my diagnosis in 2010; I even turned down a request from him to see me.  I wouldn't give them my time.  They all seemed to be "Up themselves".

Last September, I officially registered in Swansea.  I had a new GP; a new MS team; a new everything.  I sort of assumed things would be worse.  As I have said on these pages before, I have been wrong before … not once, but twice!  Well I was certainly wrong about the MS team being equally as useless.  Within a couple of months I was seen by the consultant and later by the MS team's Neuro-physiotherapist.  Various stuff was fixed up for me and, after another assessment, hydrotherapy.  At one time, I had so many appointment letters; I thought we were going to have to get a bigger fridge!

That is that same MS team that you and I are both now under.  That is the same MS team that has arranged the physiotherapy and hydrotherapy for you. If the lady that takes you for hydro is Gill, then that is the same lovely lady that took me.  I was speaking with her earlier today.

My advice is to take and use all the help that is available.  That they are not euphoric is their problem; you just keep getting well and keep smiling.


And remember, whatever those people actually believe, they can only say what they are allowed to say.  Can you imagine what would happen if Pearson was to proclaim that taking loadza antibiotics and a basket-full of supplements was a great idea and may well cure MS; can you imagine the s**t that he'd be in?  Can you imagine the disciplinary hearing an MS Nurse would have to go through if he or she gave the wink and the nod to taking loadza abx?  You and I can't really know what they all think … and I bet that they don't all think the same thing.  I think that, compared to where I was, they are a pretty good MS team.

Since you joined this merry group of people here at cpnhelp, I have twice run out of tinidazole and twice you have saved my bacon; the last time was earlier this year.  A little while back, I posted a thread about No VAT on drugs etc.  This issue is still ongoing but, as a result, the superintendent pharmacist at a pharmacy that you and I both know, is sending me some tini for free.  You and I will share that between us. You will be going for a bit longer than August me thinks.

Let me say one more, very loud, WELL DONE MOGGIE!

 Image removed.


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

―    Abraham Lincoln

Hi Glenn

I disagree about the MS team. It was my rheumatologist who sent me for physio and she is aware of the site and is very interested in my progress. It is also she who checks my bloods. She is restricted by the not so NICE but does a full screen plus kidney and liver checks.

On a serious note, I don't understand why I'm almost well and you are not. I remember something about catching it whilst it is relapsing remitting. As I have had MS for at least 30 years and both Pearson and his predecessor, Rickards, confirmed secondary progressive, it leaves me perplexed as to the complexities to the courses of both MS and CPN.It no wonder I get headaches