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Archive for the ‘Thiamine B1’ Category

If we dont have enough people with FA willing to participate in studies, research will make a stop and it will take –  f o r e v e r – to find a cure! Who with FA feels like they have time to wait any longer then absolutely necessary?

Do you want a cure for FA?

If your answer is «Yes!!!!»: You must register here and be willing to participate in research (more…)

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Today I took another SARA score at my doctors and it is very exciting. In this score the best result is 0 – zero.

31.08 – scored 9,75 (right before my first injection)

26.10 – scored 7,2

25.01 – scored 5,1

Today I was able to take some steps  in tandem walk and stand for longer in tandem stance. It didn’t look pretty, that’s for sure, but I did it. Imukin and Thiamine seems to be a good match ❤

Many people are very curious about Thiamine. If you have tried it, do you mind leaving me a comment below? Your experience is important because it can help others. Thank you 🙂

Here is more about my own experience, dosages, link to reasearch and so on.

It’s been to long since I posted a picture of my cat, I know. Her she is 🙂

fafysio-extremeliving

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Many people contact me lately checking to see if I’am alive. Yes I am! 🙂

I’ve been taking Imukin for over three years now. I still feel great. The improvements I experienced during the first year has been stable.

So to another possible treatment for FA: thiamine or vitamin B1. This study was published earlier this year:

https://www.ncbi.nlm.nih.gov/pubmed/27488863 by Roberto Fancellu et al with really promising results.

Similar to Imukin this medicine is already out there so I asked my doctor If I could try it. It is a vitamin so it is very different from Imukin and there is rarely any side effects. My doctor did some research himself and then he said yes. So at the end of August I had my first injection of Tiacur. (Vitamin B1/Thiamine).

My doctor took a SARA test before the first injection. It was 9,75

I used to have muscle cramps in both my legs many times every night. They are gone! Or almost. I have on or two cramps per week in one leg at the time. Much better than cramping in both legs 4-6 times every night! I am also more coordinated and have more control at the exercises I do at the gym. Just ask my physio 🙂

After two months my doctor took another SARA and the score was 7,2.

With SARA 0 (zero) is the best score and 40 is bad.

He noticed that all coordinated movements was improved as well as my speech. Fantastic right?! Balance and standing exercises has not improved at this moment.

thiamineThe injections are intra muscular so they are a little bit unpleasant. I have my mother or Morten doing the injection.

The injection site is in the glutes or in the deltoid so it is a bit tricky to do it myself. The dosage is 100 mg two times per week. I feel no side effects or reactions.

I really hope these improvements will last, and perhaps there will be more improvements.  The study from Italy showed lasting effects after three years. Fingers crossed!

Thiamine is not as expensive as Imukin. The price per bottle is 423 NOK and I take two bottles each week. (Well, still expencive).

This is the medicine I take:

Idebenone: 1500 mg each day
Imukin: 250 micrograms three times per week
Thiamine: 100 mg two times per week

That means five needles per week. Is it worth it? YES.

Are any others taking Thaimaine? How do you feel?

 

 

 

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