Maria Nylin

It has been a while since I wrote now. I have been using antibiotics against lyme disease for about a year and a half starting October 2008, when I went to Germany for two weeks with my mom to receive treatment. I was doing IV-treatments 2 times per day while staying there as well as eating 3 other types of antibiotics in pill form and also got injected with cortison to bare the pain in my body. I was very sick the first week and could barely get to the hospital everyday but the second week was a bit better and we got to see the city and met some nice people there. There was also a young boy there at the clinic who couldn´t move his legs due to lyme disease. He was only about a year and a half at the time I think.

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I got in contact with Dr Kleeman in Germany. He is a doctor who has been working with lyme disease for 15 years and is a well known authority on the subject. I sent a blood test to another lab in Germany and it turned out positive for lyme disease. In Sweden, the doctors don´t believe in chronic lyme disease, so they don´t accept the testing either. All the lyme experts here believe that you can get small doses of antibiotics for a period of about 14 days and you will get cured from lyme disease. This is totally wrong. The lyme spirochetes are very well suited for survival and are mainly located in the organs, especially fatty tissues like brain and liver, and is also considered an illness of the small vessels in the body. From the tick bite they travel through the body and the blood vessels, go through the vessels and creates inflammation in the tissues. The inflammation makes it more difficult for oxygen to be delivered throughout the tissues. A way that you can see it is in the eyes. It is common for lyme disease patients to have red, dry and itchy eyes which are also very sensitive to sunlight. The redness is not just the eyes that are dry, but the actual inflammation of the capillaries in the eyes.

Since I am refused treatment in Sweden my parents had to take a bank loan for $20 000 for a two year treatment with antibiotics. I can´t take a bank loan myself since I don´t have any money because of the illness. Many other people have sold their homes in similar efforts to get better.

I went down there and got intravenous treatments two times a day for three weeks and got even worse. My mother went with me and helped me wake up and get out of bed for the appointments. My head felt like it was going to explode and my eyes got more red than ever. Dr Kleeman is a wonderful person as well as his staff, and they were extremely supportive. It´s the first time in ten years that I have experienced that, most doctors I have met are either ignorant or rude or sometimes both. I went back again to Sweden with a promise from my doctor that he would help me with the IV injections, but when i got back he changed his mind. So now I have to figure out how to solve that problem.

After 10 years of being bedridden without being able to communicate well or hold a thought long enough or be able to learn anything new and just be too exhausted to walk around or get up to take a shower and with terrible muscle pains and migraines and a loss of income, great memories, adventures, spontanious creation, guts and most of your old friends, it is very easy to think you are starting to go insane. In fact I was thinking that thought the first day of my illness.

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I got a comment about Sleeping beauty syndrome, that I might have that disorder as well. The sleeping beauty syndrome I haven´t researched myself much yet, but apparantly there could be some connection when you are sleeping around the clock, although for me the migraines and muscle pains have always been the main issue or what is most difficult to live with. If you look at the illness it seems some symptoms are the same as for Chronic fatigue syndrome , although there are important differences. The correct term for Sleeping beauty syndrome is Kleine-Levin syndrome.

“Kleine-Levin Syndrome episodes are cyclical. When present, KLS symptoms persist for days, weeks or even months, during which time all normal daily activities stop. Individuals are not able to attend school, work or care for themselves. Most are bedridden, tired and uncommunicative even when awake.”

When you have Chronic fatigue syndrome the episodes are not cyclical in the same manner. The Kleine-Levin affected person lives a normal life between the episodes of attacks and a person with Chronic fatigue syndrome never gets those normal episodes. Also the list of symptoms for a person affected with Chronic fatigue syndrome is a lot longer with up to 50 different symptoms, but not all at once for the most part.

I found after only 5 minutes of “research” two boys who contracted Kleine-Levin syndrome after a viral infection, which shows also in that illness an infection could be the main culprit that sets of disease.

How wonderful it would have been to not be sleeping like I have for years in agony and pain; then one day the prince would come and wipe it away with a simple kiss!

Or…what if doctors one day could take action and be responsible and listen to what we, the patients have to say. This will likely not happen unless the testing methods can get an accurate result out of any type of the thousands of parasites that exists in nature, or bacteria or virus or other infection for that matter. The truth is that the testing methods of today are not at all accurate in the majority of infections that we humans deal with. For me and everyone else who reads science reports often and for an extended period of time, this is a simple truth, but this truth might sound unbelievable for “beginners” in the health field. To make matters worse, this truth is impossible to comprehend for infectious doctors. And for us patients to be having our life at stakes because of their denial of the flaws of the testing methods is just cruel and inhumane.

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So I decided to use myself as some type of guinea pig. I started trying out supplements in health food stores and got to try a bunch of medicines from my doctors. To even try to list all the things I have bought or done would probably be impossible, but if you can imagine walking into a health food store and looking at any supplement on the shelf, I have most likely eaten it .

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