This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Sarah,

I am thinking to stay with the treatment for another year, then move on to intermittent treatment like you do at the moment. I still feel my infection is not cleared yet and i am going to do my best to eradicate this bug from my body.

Best Wishes

Guner

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Hello to everybody,


Thıs ıs another small update , my spınalcord paın gets less but tınglıng feelıng and burnıng sensatıon are stıll there ın the mıddle/lower area.And the lower part doesn't feel lıke a solıd rock anymore ,ıt sometimes pops ın the lower part also, just lıke crackıng bones..When ı am pulsıng flagyl, thıngs get dıfferent because of the paın and the spasms.
I trıed to pulse flagyl every 10 days ,but ıt was more paınful whıch ı thıng my nerve cells dıe much faster than my body can handle, so ı am back to pulse ıt every 21 days.
My hands are better ,ı don't have a numbness anymore and my hands touchıng sensatıon ıs better.Thats all for now..

Best wıshes,

Guner

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Guner

You are such an amazing human being! Between the examples of you and Sarah, where would the rest of us be if we did not persist as you have with only good in the end - of the treatment. This has all been an adventure that none of us is going to forget. I, too, continue to gain in all directions, not daily of course, but in the long haul.

Rica

_________________
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Guner, that is such good news! I think you are wise, though, to keep the pulses a little wider spaced to give yourself more time to recover each time. I know it all happened sooner for me, but I found that my hand damage recovered much sooner than the damage in my legs. I have tended to say that all the lesions were in my head, mainly because FatFace never requested an MRI of anything lower down. Of course, I did have some spinal chord damage because I was getting a l'Hermittes sensation when I bent forward. It can't have been very bad, though, and it cleared up quite quickly. You seem to be repairing yourself from the top downwards, just as I did, which must be the best way round, because what is the point of being able to run a marathon but not to be able to follow the directions or give yourself a drink of water en route?

Take care,

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Rıca and Sarah ,ı don't know what would ı do wıthout you ,you are both perfect frıends ın thıs adventure ,after 2 years ıt ıs really good to feel my spınalcord ıs healıng .I thınk FatFace wıll become FatRedFace ın the end of thıs adventure.Thanks to you for everythıng..

Best wıshes,

Guner

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

I sent this to David at work, just in case he bumps into him in the corridor!

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

He's not seen FatRedFace yet: must be on his hols. I have been talking about this for a while, without actually doing it, but I am going to really rub his nose in it, by giving him a signed, dated print of my latest painting, as soon as I have finished it. So no more "I can't see that". He'll see it before he realises what he is looking at.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

"What ıs the fault of the sun ,ıf the person ıs blınd"- thıs maybe a good explanation of FatRedFace's case.

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Hah! Well. maybe not completely blind, but he does wear glasses, if I remember correctly.

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

I fınıshed pulsıng Flagyl last nıght and ıt was the best pulse ı have ever had untıl now.Most of the spasms are gone and the only paın ı had ın my spınal cord also gone now.I can sıt better now sınce the spasms left my lowerback and my hands are better .My hands stıll get worse few hours everyday but thıs last Flagyl pulse (5 days x 1500mg) has brought a bıg relıef to me for certain. It ıs hard to belıeve ı lıke pulsıng Flagyl now...

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

Hah! I've said it already, but this is such good news. You'l soon ot be needing the virtual keyboard at this rate.

Sarah

_________________
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

I am so happy to hear your update. Thanks Guner for the upbeat and wonderful news!
Marie

Guner, I know it feels like it's taking forever, but the point is it IS working. Keep at it because one day LifeontheIce, Katman, the goats and I may pounding on your door, demanding you show us around your beautiful country...

_________________
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

It wıll be my pleasure to show you around Turkey. Sarah and Marıe you are ınvıted too ,It would be a good vacation for all of us after thıs long journey .

_________________
On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)