Thursday, March 8, 2012

Message from a friend with MS

Tarja, who was in our group of "liberati" in Poland in 2010, sent us the following message the other day, by coincidence the day I was being re-liberated. I think this is important for other MSers to hear:
Hi all,

I thought I'll let you know what I discovered recently about my illness. I mentioned earlier that I had a thrombosis and lost my azygos. Then I was diagnosed with Lyme disease (borreliosis for Europeans). That was after long discussion about my symptoms with doctor specializing in infectious diseases. I took antibiotics for 3,5 months and felt a bit better, but not as much as I anticipated. Already earlier I had decided that I needed some proof and correct medication, so I contacted Borreliose Center Augsburg (BCA) in Germany, sent my blood samples in February and went to see them last week. I found out that I have Lyme disease, ehrlichiosis, and mycoplasma.  All these tests were negative in Finland, but the tests were designed for acute, not chronic diseases. That explains also why the results of my Liberation didn't last: those chronic bacterial infections cause inflammation of the veins.These also explain my symptoms, pains and fatigue as the bacteria steals the energy from the cells they inhabit. So, now I'll have to start a long treatment with antibiotics to rid myself of all those infections, and then we will see what remains - MS. Although, at the moment my medical identity is confusing - I have four different diseases?

This have been a surprise, as I didn't have a tick bite indicating Lyme, and I lived in Asia when the symptoms started.. If you can, please have tests for chronic bacterial infections, maybe you'll  find some little bug that makes you feel much worse than you should be.

I'll keep you informed on (any) progress.
All the best to all of you,

Then, in the same message where she gave me permission to publish what she wrote, she added this:
Hi Ted,

I'm happy to  hear that the procedure went well and you have hope for further improvements. I have started to think that there are at least four reasons for MS: autoimmune, congenital errors in veins (Liberation), bacterial infections (affecting veins), and trauma. They all seems to cause a domino-like chain reaction, all leading to same symptoms and diagnosis. Therefore it is important to determine the cause before giving any immunosuppressing medication - e.g. those drugs won't help with congenital malformations and will cause the bacteria to spread faster.

Anyway, my battle is just beginning (again). I hope for you that the second Liberation will be the last and there will be only improvements!


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