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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.

Hi everybody;

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.

Wish you all the best… 

Yilfer Guner

Hi everybody,

Hi all,

It has been a long time since my last update, i am still taking doxy/roxy/flagyl continuously and i feel better , all the spasms/pain/burning sensation have left my body. The activity in my spinal cord became mild and it is very soft when i bend over. It feels like a brand new spinal cord but things change very slowly because some hours of the day the activity inside becomes stronger. One other thing is my urine never gets darkened ,it is always light coloured. Thats all for now, all my best...
Guner

Hı everybody,

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My little update for jan-06 The activity in my spinal cord changes everyday, it sometimes feels like a cat scratching or itching inside my spine and sometimes i feel light pain in the middle and lower area.This activity in my spinal cord is getting less and moving to my lower back where my first lesion appeared.Besides all this i don't have any other pain or activity in my body.Everytime i pulse Flagyl i happen to feel more activity in my spine and get more spasms all over my body though. Guner

Hi all, July 2004 I started minocycline 100mgx2 and rifadin 300mgx2 a day.The next day i felt my spinal cord was more heated than the rest of my body.On the 15th day i had 38.5 degree fever and flu like sendromes ,i stayed in the bed for 7 days.This was my first herx reaction.I also had popping ear when i open and close my mouth, just like in the airplane landings.For the next three months i havent had anything else besides popping ear and pain in my foot. november 2004 I had my second herx reaction which was 15 days long with pain in my kidneys and my urine was like transparant jello.I had abdominal pain as severe as in my kidneys.Because my urine was like a jello i kept checking my urine visually in a plastic bottle.Every two or three days the bottom of plastic bottle was getting dark which never happened before i used antibiotics. December 2004 I switched to INH 100mg.x1 rifadin 300mgx2 metronidazol 500mgx2 a day without pulses which clears the infected immune cells from the body.For the next three months i kept taking this combination without any side effects,i had mild abdominal pain,tingling in my feet and burning sensation of my spinal cord.The bottom of the plastic bottle was dark red after i switch to this combination. March 2005 I had the hardest herx reaction for 45 days,i lost nearly 20 kg. my brother and mother was worrying about me ,they tought i was going to die.They scared me too then i took cortisone (prednisone) to surpress my immune system which ended my herx reaction the next day.End of march i swithed to the combination of doxy and rifadin with pulses of metronidazol. April 2005 I had severe joint pain in my knees and my hips and severe pain in my feet.I also started having swelling in both my legs and feet. June 2005 Swelling is all gone now but a horrible pain started in my lover spinal cord which sometimes makes me moan.