Good morning all!

I originally signed in to get part of the gastritis support group but couldn't help checking if there is a CFS support group as well. ;)

As I think that there are far too less encouraging stories out there about recovering from very severe CFS, I would like to tell my story, hoping that it can give you some hope!

Here it is:

It was the 27th November 2009 when I first noticed that something alarming happened to my body. I had been in bad health the weeks before I was suffering from swollen lymph knots and a permanent sore throat. The doctor could not find out what was wrong with me. Later, I should be told that I had been suffered from glandular fever. It was the autumn before my finaI diploma exams, and despite some health problems, I was trying to learn hard. On the 26th November, the sore throat became much worse, and again I went to see the doctor. He said it had turned to tonsillitis now, and I had to take antibiotics. In the afternoon of the 27th November, I noticed my muscles aching. With 23, I had never had muscles aches before. Within a period of two weeks, I developed a lot of symptoms, and my body became weaker and weaker. Despite the antibiotics, the sore throat had not completely gone, and I got another inflammation in the temporomandibular joint. I had never experienced something similar to that, and I knew there was something completely wrong in my body.
In the beginning of December, I was too weak to walk. My then boyfriend, now husband, brought me to hospital but they just said I had caught a virus, and sent me back home. My mother came and took me home with her, 300 kilometers away. I remember developing new symptoms from day to day. I suffered from extreme muscle weakness, heat intolerance, a heavy headache, nausea, inability to sleep, heartrace, neurological symptoms, brain fog, hypoglycemia, craving for sweets, hormonal dysbalances, bloating, cramps, Even though I was very weak, and my fingers were weak, too, I googled for my first symptom muscle aches. After some research, I found two illnesses: fibromyalgia and CFS. I had never heard of those illnesses before, and I was absolutely shocked when I found out there was no cure.
My GP sent me to hospital, and I had to stay there for nearly two weeks. They did some tests, but couldn't find anything wrong except from the EBV. I asked them about CFS, but I didnt get an answer.
My boyfriend caught me up at hospital, and took me the 300 kilometres back home. From that point, I lived with him in his small flat, and he cared for me all the time as I was too weak for household tasks and even simple tasks. I was bed-bound, and could only take a short shower. He helped me find a doctor specialized in the treatment of CFS. We were lucky, there was one just 10 kilometres away, Professor Huber. So, two months after the sudden onset, I saw a doctor who confirmed the diagnosis CFS/ME. He began to treat me with vitamin B12, acetyl cystein, -lipoic acid, coenzym Q10, vitamin D, a vitamin B complex, selen, L-carnitin, ribose and some other orthomolcular substances. Besides the oral medications, I got acetyl cystein and -lipoic acid as infusions twice a week. I was shown to do the vitamin B12 shots myself at home. I did this every day. In the beginning, I found the infusions to be exhausting for my weakend body, and I was feeling terribly bad after the infusions. But after only two and a half weeks, I noticed a slight improvement in overall symptoms. From then on, my muscles became stronger. I was able to take a short walk, and developed a pacing program. In April 2010, I was able to walk 20 minutes, and I was very glad about that. Then I got a series of relapses. I had agreed to take part in a television show about ME. But the shooting was exhausting, and two days later, I had the first relapse. The second relapse was the consequence of unforeseen circumstances during an appointment. Then I got a relapse due to heat in May. Till then, I did not know that heat could lead to a worsening, too. So we bought an air conditioning system via amazon express shipping. Another relapse followed. In June 2010, I was at about 10% again, and was bed-bound all day. I was creeping all day and very depressed. My boyfriend had to come home for lunch as I was too weak to make the extra way to the kitchen. There were times when he also had to feed me.
The infusions helped me to come over this, and an upward trend followed. This time, I came to a point when I was able to walk 35 minutes. I was so proud. I started a new diet as I was suffering from severe hypoglycemia. There had been times when I had eaten half of a loaf of bread because I was shivering from hypoglycemia and got frightened. So I tried not to eat more the 11 bread units per day. It was very hard in the beginning, but it worked. Additionally, I took chrome. After this diet, I did not suffer from hypoglycemia symptoms any longer. In October, my boyfriend and me moved into a new flat with a lift in the house for me. It was our first shared flat, very bright and nice. With a large balcony, and I spent much time lying on the balcony.
I started an anti-candida treatment that time as stool tests showed increased candida. I took caprylic acid as antifungal and took Mutaflor for the flora of the intestine. Mutaflor contains e-coli bacteria. Unfortunately, I did not tolerate these bacteria (now I know that they liberate histamine). I noticed a high and loud puls, and got a severe stomach ache. We were frightened and went to see my doctor. I became even more excited when the doctor tried to measure my puls. It was 120 and higher. After two hours, we went home with a puls of 120. I could not sleep that night as my puls was so loud. I stopped taking Mutaflor but my puls did not calm down. 120 for 24 hours a day. I thought I would not stand that. A view days later, I got a relapse. In the following weeks, I should get three more very heavy relapses. I found myself worse and weaker than ever, bed-bound, and not able to walk one single step. We used the wheelchair for toilet, my boyfriend did everything for me. And my puls was still at 120. I was always panicking. Panicking when the door bell rang, when the phone rang, I was shivering all over very often. That time, I did not go to the doctor for infusions as I could not manage. I was too weak to sit in the car for 10 minutes. I was at 0 at Bell's sclae and yet it still became worse. My whole body was burning like fire. Four months into this hell, the day came when I was too weak to sit in the wheelchair for toilet, when my chewing muscels became too weak for eating, drinking, just opening the mouth and speaking. It was terrible. I needed 24 hour care. I thought this was the end of my life. I could not sleep any more. It was like hell. I could not even turn around in bed. While writing it down today, I notice how shocked I still am about this situation.
When I could not eat, my boyfriend called the doctor, and he came to see me. He sent me to hospital. Even though normal hospitals are not specialized in treating ME patients, and doctors are often very unfriendly, this was the turning point for me. I got intravenous nutrition, a neurologist ordered a betablocker, and I was given Tavor against my panic. Even though I was feeling extremely weak, these medications made me sleep and calm down. My boyfriend persuaded the doctors to give me the infusions with acetyl cystein and alpha lipoic acid. I got them daily, and they worked. In March 2011, I was able to walk to the toilet myself, and the doctors let me go home. My boyfriend found a GP for me who agreed to give me the infusions three times a week in the beginning. And I was feeling better and better. I had learned a lot from this very, very hard time. I now was very, very strict to myself, and I managed to avoid relapses at all. I was so cautious. I never made an exception from my stepping-up plan. We are sure that the Tavor at hospital was very, very important for me to calm down. Panic also causes oxidative stress and free radicals. Besides that, we decided that I would not undertake the anti-candida treatment again as this weakened my body only more.
In summer, I could walk for an hour. Of course, we walked in the evenings when it was cooler outside. I began to sit on my desk and learn a bit. It was very hard in the beginning as over the past two years I had forgotten almost everything. But it made me conscious. In September 2011, I experienced something I call partial relapse. First my hands became very, very weak. I could not hold a glass or eat myself again. But everything else felt fine. This happened due to the excessive use of my laptop. While they recovered, my chewing muscels became very weak. This was due to stress and nightly creaking. But after a few weeks, they recovered, too.
In November 2011, I planned to make my final diploma exams in spring 2012. That time I could walk for more than one and a half hour, and I felt quite fine. I sat down and learned for about 1-2 hours a day. In the weekends, we made small trips. I noticed that I could tolerate trouble and noices better and better. While I was not able to listen one person speaking the winter before, I now could go to Christmas markets. It was a great experience!
I caught a virus in the end of December, and I had to lie in bed on New Years Eve. Six days later, I was fit again and could continue preparing for my exams. In the last weeks before my exams in April/May, I managed to learn about 8-10 hours a day. And it was ok for me then. In the evening, I often went swimming. In the beginning, I paid for swimming only one course. I found that swimming was the best for my joints.
I passed my exams, and began to do my diploma thesis in June 2012. As a chemist, its normal to stand in the lab all day, in a cloud of solvents. Having had problems with parfums, smelly soaps and other chemical substances, I decided not to go back to the lab. Instead, I did my diploma thesis in computational chemistry, kind of chemistry on the computer. However, I liked it. I finished my diploma thesis in the beginning of December. Looking back to the time of the diploma thesis, I remember only one situation causing ME symptoms. We had a few 40 degree days here in Germany in August, and I didnt feel good these days. But I did not have any other ME symptoms during this time.

Now, more than 3 years later, I am still symptom free. I have worked myself back to doing sports. I have moved overseas, and now, 2.5 years later, have just moved back ;) 2 oversea moves within 3 years which I managed fine. And I have "survived" 3 ops! I have stopped the infusions about 2 years ago and am not taking any oral meds any longer. Instead I have now switched to intramuscular glutathion injections every 3 months or in "risky situations" (viruses, ops, stress ...)
I am not the same I was before ME. I still live with this illness. I live with the fear that it might come back. I know I have to take care of myself, no partying all night, no drinking, avoiding stress, healthy food, ... I still have health problems as my immune system is still weakened. But yet I am so much better I would have ever believed possible. When I was at 0 at Bell's scale, there was this single one question I used to ask my bf (now husband ;)) every day: Do you think it is possible to make a full recovery? If I had known the answer then, fighting the illness would have been a little bit easier ...

Hope I could give some of you this hope!
I wish you all the best!
Lou