Submitted by jam on Sun, 2016-01-17 18:41

Hi Jam,

You have my very best wishes & prayers for wherever your path leads you.

I saw this article recently - about perhaps the first drug that may help with progressive MS:…

Again Jam - you have my very best wishes and prayers for your future.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAP in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi


I really hate to see this.  I am in my twelfth year.  Ten years ago my entire right side was numb - I could have skinned myself and wouldn't have felt it.  I could walk only by lifting my shoulder and dragging the right side forward from there.  I spent months and years trying to think - I am missing a couple of years entirely that I can't remember, and several times I tried to add single digit numbers with no success.   I was on a walker.  

For many years I said that quitting smoking was the hardest thing i ever did.  Then I did this.  No comparison.  I smoked three packs a day for twenty-nine years.  

Move very carefully, thinking ahead of time, take NO chances.  What abx are you taking?  

Let me know if you want my email so we can discuss this more deeply. 

I love the picture of your animals!


3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I've been accused of being too much of a cheerleader for the protocol, so I'm not going to cheerlead right now.

What I WILL say is pulsing can cause depression.  I am nearing the end of an 'intermittent' period of six weeks of antibiotics and the flagyl once again caused me to be more emotional than usual and very negative for a few days.

Please consider that before making any final decisions.  Maybe wait 'til you're not under the influence of a pulse and then revisit it.

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

So sorry to read this, Jam. Sending you hugs.

Please don't make any hasty decisions. As MacKintish says, none of us are at our best to make decisions post pulse. I know I'm certainly not.

Lots of symptoms - and walking, especially - continued to get worse for me until I'd past the 3 year mark. And, even though things are now so much more improved, I still have to be careful when pulsing and take no chances.

I've noticed that you always seem disappointed when your pulse is 3 days. I think some of us just need to take things slower than others. I've been taking abx for nearly 5 years now. It took me a very long while to build up to 2 day pulses and this week was the first time I've ever managed 3 days. I'm happy beyond words about that! But the important thing is that, even with my 2 day pulses, I've improved from hardly being able to walk, to being able to walk miles. Slow and steady can be fine, if that's all our bodies can cope with.

Take your time and pamper yourself. Perhaps increase detoxing to reduce inflammation. Sending positive thoughts and cheering you on x

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11)

Jam, you were only the other day talking about the biotin complex you were taking and how much good it was doing.  This was presumably pre-pulse!

Look, stop pulsing for a while but carry on with the main antibiotics and the biotin.  You can restart pulsing at any time if you want to, without it being harder, and who knows: it might even be easier.

You are no less likely to fall and break something if you stop, but one thing is for certain: stopping will not make you better......................Sarah, who wants to see more of your lovely photos.

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 Jam, you and I both started on this treatment around the same time.  You were at a much more advanced stage than me.  I was 6 months into the treatment and 30 tinadazole tablets (6 pulses) under my belt before I stopped feeling worse and started feeling better.  My worst symptoms have always been despair, low mood, hopelessness and lack of energy in my brain.  No one knows how hard it is to ride the waves of despair than other people who have been doing this protocol.  It passes.  

I think Mack is very wise when she says wait until the post-pulse blues have passed before you decide on your way forward.  Irene


Thanks all for their good wishes and comments.  I will continue with the abx and Biotin but give a rest on the pulsing.  Have had a migraine for 3 days so I am worn out.  

Wonderful t hear some positive results, I will keep reading posts and keep in touch.

All the best to everyone.

✋ Jam

Hi jam, was very concerned at your latest posts to see that you were at the point of giving up - glad to see that you have come to the point of continuing and slowing down on the pulses - `i have been doing this a couple of years longer than you and believe me have considered stopping many times as it is slow - however some good things have happened. 1 yr ago I couldn't get off the floor- now can. balance still rubbish, but believe it''ll be back

pain gone now thanks to gabbapentin`please get on skypes as typing is a struggle = best to you love S

diagnosed RRMS 2000 - had v little trouble til 2009 when changed to SPMS - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abx 24.08.2



Thanks for the  comment - I am on Doxy, Roxy, NAC and OrnidazOle.  Biotin also.    Cannot get other antis here, so having to make do.  Very hot today, 34 degrees C on the deck.  I will give the  Orni a break for a couple of months to see if I feel better.   I cannot walk due to leg clicking back and locks.  Like walking with a wooden  leg.

Like trying to walk with a wooden leg.

Thanks all for the encouragement.  Still trying.


Hey Jam,

As you already know from the private message that I sent you a couple of days ago, I am away on holiday. Because I am away, I have no keyboard and I'm doing this on my phone, mostly by voice dictation. Apologies in advance for spelling and grammar.

So Jam, you mentioned giving up.

This is a strangely constructed site in that it is not about a particular illness but about a particular bacterium. There are all sorts of people on this site with all sorts of illnesses ... though a great many of them have MS: you and I are both fine examples of that.

You mention giving up your kiwi tini. I know of a woman in a Ayrshire, Scotland, that is once again walking normally after being on a Zimmerframe for over 25 years. That same lady set up the LDN Trust. That same lady has never taken a nitromizadole drug and she is only taking half recommended dose of doxycycline. She is getting well nonetheless.

I can think of a couple of big names on this site that don't even take any antibiotics. They are doing their stuff and they seem to be doing pretty okay.

We are all very different people here at CPN help. We have different bodies and different genetic makeup and probably different combinations of different infections too - some more than others. Some people get better quicker than others (those are what I call the queue jumpers).

Jam, you once described yourself as a small person. For your information and for the record, there are no small people on this site at all. All of the people here are huge. Every single one's a fighter. That's what we all have in common. There is a whole range of different things being tried by different people; biotin being just one of them. Lots of different things being tried but all of the people are big fighters (not least you).

Last Monday week, I was many miles from home and going to a meeting. I was only about 25 yards from the hall. My legs just gave way and I fell in the street, rather like a drunkard. I was helped up off the floor by a young couple also going to the same meeting (not Alcoholics Anonymous). Last Thursday week I attended my first session of hydrotherapy at hospital. Whilst showering myself before going into the pool, I keeled over, went down and hit my head on the hard tiled floor. I was not adiquately covered and I had a female physiotherapy assistant the other side of the curtain. All all these events conspire to sap away someone's strength as well as their dignity.

I know that if I would to give up then there would be nothing. In any case I cannot give up. I have promised to drag you across the finish line if need be.

There are a few of us siblings in sync (we know who we are). We are all fighters and we are all winners. The combination of what it will ultimately take may vary from one to another, but all of our little crew get there in the end. We fight on.

I have spent much this week either in the jacuzzi all the pool. My legs are a bit stronger now. I have a long way to go yet but there be no white flags here.

However you go about defeating your MS, Jam, I wish you good luck.



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

―    Abraham Lincoln

Hi Jam

My leg does this.  it started probably around the two year in mark.  I have been doing cap for 3 years and 4 months.  my leg still locks but it does have times when it does not so i try to hang onto those times.  keep taking the doxy and roxy at least that way you will not have lost the good work they have done for the past 2 years.

all the best

MS Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxy 13/10/12, started roxy 06/11/12, increased doxy 28/11/12. first metro pulse 01/01/13. Tini Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NAC,ALA,AcetylL-Carnitine,Fish oil,

Yep, and I have decided to throw it in forever.  I will continue with the abx at this stage however that may go too.  After 2 years and progressively getting worse, I can see no point.   Huge bruising after legs collapsing at the bench yesterday - I think it is time to throw in the towel.  Broken bones will likely be on the cards if I continue!

One glimmer for seconds only in all this time and I feel as though I am flogging a dead horse.  I feel peeved as I am not someone who gives in easily but I don't want to do myself further harm.

Good luck to you all.  I am primary progressive so it may be more successful for some.