This Is MS Multiple Sclerosis Knowledge & Support Community

Guner,

I have read all of your posts so many times. Thanks for paving the way to others.

Congratulations on your hard won improvements.

Daisy

Hi Daisy,

The good thing is those hard won improvements continue to increase day by day..

Guner

Hi everybody,

Ýt has been a long time since my last update because my condition/edss is about the same as in my last update but the activity in my spinal cord has turned in to a something like storm or hurricane which now feels just like northwest wind. Ýt is hard to explain by words but i felt moving objects inside which i guess was cell death-apoptosis happening in my ms lesions area. And my left hip joint swelled a little two months ago, it was painfull in the begining but lessened in time and is almost gone now. Overall i am much better than before if i compare myself with last year. Continous protocol was hard to tolerate in the begining ,i had to take active charcoal and had to take a break two times each for a week but now i feel very comfortable with it and i do not need to take a break. I also tried infrared lamp on my spinal cord (30min/day) for a week , it caused a little pain in my liver area which i think was happening because of too much dead organisms and endotoxins ,so i stopped using the infrared lamp. Now i am on continuous protocol and feeling a lot better than last three years. Thats all for now..Best wishes to everybody…Guner

Guner, that is very good news! I like your way of describing things: hurricanes dropping to North West winds.

I'm glad you were sensible and stopped using the infra-red lamp aimed directly at your spinal chord, especially with taking continuous flagyl. Too much inflammation all at once isn't a good idea.

The main thing is, though, that you are feeling better than any point during the last three years, so long may the improvements continue, and best wishes to you.

Sarah

Thanks Sarah

Yguner - Happy New Year to you!

Wondering if you had time to post an update ?

Hope you are well!

Daisy

Thanks Daisy, happy new year to you too. I am still on continuous cap and doing very well, my spinal cord feels better for sure, there is almost no activity left inside it except tail bone and hip joints area. I usually stay in bed and watch tv lately because i am tired of playing pc games on internet. I don't even check my mails for weeks.

Best wishes..

Yguner, Where are you, my friend?

Guner,
We haven't heard from you for way too long. Please stop in and tell us how you are and if you can, your update on the MS survey on the other site would be appreciated. Thanks..
Rica

Hi Macintosh and Rica;

I know it’s been long time since my last update but I didn’t want to update till I have any phsical improvement where as I had so many changes in activities that I had in my spinal cord. Fortunetly the activity gets smaller in size. I would say it is a cylindiric shape and the diameter gets smaller by time. It’s hard to explain but definitely something feels like my nerves are being repaired but there is no phsical improvement which I hope will be coming soon because my disability score was 9 which is about the same now. I am and will be taking continous Cap. I hope I will give you good news soon.
I am also wondering how you guys are doing? Cause I can’t read much on the forums.

Wish you all the best… 

Yilfer Guner

Sir Yilfer Guner! SO good to hear from you!

I'm doing great - thanks! I figure I'm 98% recovered and planning on getting it all back as nerves and pathways are repaired or rebuilt. Somewhere I read that repair takes a couple of years, which means patience is my next big hurdle.

Are you doing physical therapy? Sounds like that's what you need right now, since the abx is doing its job. Now comes the 'work'.

Hey Yilfer, long time no hear!! I seem to have had messages from practically everyone in Turkey with MS except you.

I don't think I can claim Mac's 98% recovery, but not so many points behind. From what you say, your turn should soon come and we are all hoping that the time will be sooner rather than later.

Sarah

Hi Machintosh
Hi Sarah

It's been a long time I missed you guys.. but I can't get on line so often. I am spending my days mostly relaxing and watching Tv.
I have someone doing phsical teraphy for the last six months for keeping my muscles strong. It's so good hearing you recovered more than 90%.
Machintosh your are right, patience is very important for the Cap.
Sarah, I know so many Turkish people are writing to you hard job you have but you helped so many people. There are over 20 people using Cap for Ms in Turkey that I know and talk. They're also calling me so I did spread the Cap well I guess

I am wishing you all my best. :)

Yilfer Guner

Hi all,
This is my 10th year on Cap. I am still taking Doxy,Roxy and metronidazole continuously. The lesions in my spinal cord still have activities such as burning,itching and tingling. These feelings are happening for the last five years but they are getting less and smaller in time. They were feeling like a thick rope which turned into a thin string. The feelings are fading away slowly. I don't have any spasms or pain like I used to have. I feel much better. Over my shoulders,my neck and my head didn't develop any lesions during this time. I only lost the control of my body below my shoulders but not above. I still can move my shoulders easily. If I didn't take Cap, I believe I wouldn't be able to use my shoulders and above. So fortunately I am happy taking the Cap. Every 3 days I have to take active charcoal to get rid of the Toxins otherwise it makes me vomit. There is nothing else to report. I will be taking Cap and I will update in the future. Thanks to my brother who is typing this message for me.
I hope you all the best.
Yguner.

You are truly one of the toughest guys I know! SO good to hear from you!