Multiple Sclerosis

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Multiple Sclerosis

After 25th pulse

Yesterday I completed the pulse, 5 days, 3x500mg metroi. This pulse was the worst I ever had. Today I can't exist. I would only sleep but I need water. Headache. Feelings of being very weak. I think this bad reaction is because I completed the pulse in spite of I was bad. Previous pulses when I was bad I reduced dosage to 2x500 mg a day. I hope I will have huge improvement after this pulse. If only I had.

Viral and fungal re-activation

Has anybody had problems with viral and fungal infectionsi whilst on a CAPi? I am feeling so sick, and have a bad outbreak of cold sores and mouth ulcers. Why would this be? Why is my immunei system not coping with these viruses? Does antibiotic treatment weaken the immune system? I had hoped it would prop it up :( Is there anything I can do, or do I have to just sit it out?

It turns out the rental place didn't have a tutu in my size...

You have to read the last paragraph of my March 2011 posting for the subject line to make sense.

It was another recordbreaking day in Dallas.  The people who say global warming is a myth had been strangely silent for more than a month as temperatures climbed to levels that even the residents of Phoenix or Tucson would have found uncomfortable.  Worse for the Texans was that the humidity had not dropped to desert levels so being outdoors was like being slow roasted in a convection oven.  The deteriorating asphalt of the parking lot outside his neurologist's office that he had skipped across like a frog jumping between lily pads at the time of his last visit had melted in the heat and looked almost new.   

next pulse

Today I have started the next pulse. Immediate reaction was very strong pain in knees. I was afraid I would not be able to stand up. But no problem. I stood up fast and walked fast. I will see how it continues. It's like a detective story for me. I can really tolerate any pain unless it prevents me from moving/walking. For many years I didn't feel any pain. Even when I burnt myself on the oven I felt nothing. Just only in 5 or 10 minutes I felt that I had burnt but not much pain. I just could see the result - burnt skin. So any pain is positive for me and it may sound strange and abnormal but I love pain. After so many years of feeling nothing - no pain, no warm, no cold it's amazing I can feel that this is cold and this is warm and even that the pain exist.

Here an inch, there an inch, after while a mile

It is a very long time since I wrote a blog, so please forgive me if it is a ramble. As MacKintosh says, many of us have moved back into real life. I certainly have. But there is so much need here on this incredible site that those of us who have had so much returned to us have a real obligation to try to give encouragement to those who are struggling with this horror. 

two weeks on azi-my knees

Tomorrow I should start the third week on azi. Last night I had very bad reactions in my knees and hips. The problem wasn't pain, any bad pain I can tolerate unless it blocks my moving completely. Last night I got up at 1 and went to toilet. I had problem to stand up from bed, but I managed it but then I had really big problem to stand up from toilet. If there hadn't been a holder I would be there till morning. But much bigger problem came in the morning. I couldn't stand up from bed for maybe 5 or more minutes repeatedly trying to stand up. I could stand up just in a few centimeters, I use my rothoped next to my bed as a holder but this morning it didn't help. My knees blocked me completely. It was horrible.

After a week on azi

Today I started the second week on azi. It seems to be not so bad decision to change roxi and azi. I will see later. But after the first day of very bad reactions now my legs seem to be stronger, my hips somehow firmer and stronger too, my balance seems also to be better, my steps are longer and I walk faster. Today I went downstairs to take out a week post from the postbox. Last time when I went downstairs I was losing my right slipper on each stair and had to be very careful about the left one. Today I went down slowly without any stopping and having to put on my slippers, I was holding to only one rail when going down and then up (there are two ones and I always held to both rails when going down and up). No problem in the last steps when going up to lift my right leg. 

PPMS

How many of us have PPMSi and what is the  rate of success with this population. Does it take longer to see results? Weigh in, Please.

a good pulse

Normal 0 21 false false false SK X-NONE X-NONE

Herx vs HHV 6 progression

  Obvious Herx reactions: 6 weeks on abx therapy: 1500 Cipro daily, 250 Azithromycin M,W,F. Both improperly done Cpni and mycoplasma lab tests negative. Positive for HHV 6.  Cannot afford $$ to retest Cpn and Mycoplasma privately and correctly. 99% certain  of Cpn infection from past teen age "walking pneumonia."

  How and when do we know that a raging  co viral infection exists, causing more disease progression while Herxheimer reaction is underway?

changing abx

Normal 0 21 false false false SK X-NONE X-NONE

Little about my improvements

After 2 weeks after 23rd pulse I am again much better. I walk better I can walk in new slippers at home (I have had them for 2 weeks) that have just only one belt above fingers, no belt over arched instep. At the beginning I was losing the right slipper as I couldn’t held it by my foot, but now – no problem.

Neuro visit after MRI

Two days ago I visited my neuroi<i< with MRI brain result. I still can't believe that this visit was so good and positive for me.

twitches

It was a dark and stormy night.... Well, in this case that's literally true. We've had no moon, but lightning and thunder with no rain. It's the kind of weather you would expect at the start of a gothic horror movie... Sorry hdwhit  I copied this from your blog as it discribes exactly the night we had 10 days ago, but my story is different so I write it in my blog.

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