ChookityPop
Senior Member
- Messages
- 600
https://bjorneklund.se/bjorn-blev-f...s3pk3QxLQ6SSEEUVncsXDBAV2yeP9H_ntSndAMBjlfyao
Meds that helped him:
-Three different types of antiviral drugs, valganciclovir, ritonavir and isentress
5 months after beginning the treatment!?
"January 2019, the same thoughts came. I felt really bad.
Sara said they need to talk to Jonas. Now it was harder to get time. But in the end the meeting came. Jonas Axelsson explained the crash and then put in three different types of antiviral drugs, valganciclovir, ritonavir and isentress
- Exactly on May 17, 2019, on my 40th birthday, it started to turn around. After my children, it is the best gift I have ever received.
Björn could go with the family to Denmark on holiday. He and Sara went to Backen's amusement park with the children. They slept in hotels and bathed in the sea."
------
Björn Sjöberg was so ill that he was forced to live in his own dark room in the house in Åkarp just outside Malmö. A room he rarely left.
In the room next door, his three-year-old twin boys Hannes and Bastian played
- It was a terrible time. My dream was to be able to build Lego with the boys, but it was completely unthinkable, says Björn.
Now he, with the help of ME doctor Jonas Axelsson, is completely healthy.
Björn Sjöberg went on a real flu in 2008. He had a fever of over 40 degrees for two weeks and his stomach was full. He had to go to the hospital and was examined for gastrointestinal disease ulcerative colitis.
- It ended with me being diagnosed with IBS. But something happened to the body that time. I, who felt so good about exercising, had to stop, the body was torn down instead of being built up. I also had to start opting out of things in my everyday life when the energy was not enough.
The years went by and Björn stayed at about that level. Not good at all. But not a real disaster either.
- In September 2016, I was with the job in Florida. Then I completely covered. I could not walk and was left lying in the room. In the end, the comrades had to drive me to the airport and put me on a flight to Sweden.
He was incredibly tired when he came home to Sweden. Then the body turned off completely. Björn could not get up and it stuck in his arms and hands numb. The eyes were dry and the mouth was full of blisters.
Found nothing
He was taken to the hospital and there was mostly nothing found. "Only" protein, a sign of disease activity, in the spinal fluid
- My father died in March that year and I thought I went into the wall. I was so bad that I do not remember much of that time, it's mostly a gray fog.
Björn was referred to the neurologist in Lund who said that everything indicated that he had ME / chronic fatigue syndrome
- I had never heard of it and just said ok. Then I asked if there was a chance to get well. He replied that there was. I would start with CBT, start training calmly and then increase the training gradually.
Björn's wife Sara then worked at the Swedish Social Insurance Agency and had come into contact with ME. She became desperate, saying it was a life sentence. She further said that he was absolutely not allowed to train, that it was completely wrong. The doctor also gave the go-ahead for Björn to go away to Sara's parents over Christmas 2016.
- In Sala, with Sara's parents, the super crash came. I became so terribly ill that I could not make a sound. I also got a very severe nerve pain, mostly in my arms and legs. I also became sensitive to sound and light.
At home in Malmö, the family was forced to get a wheelchair and set up their own room for Björn. There he spent, for the most part, the whole of 2017. There were some excursions. Mostly to the toilet and sometimes to the hospital. But also three times to Sandnes in western Norway to get the medicine Rituximab
- But Rituximab was not a plus for me. I was catastrophic after every trip.
Got to do pots test
Björn could not bear it. Sara googled and read a lot about her husband's illness. She looked for pots and Björn's general practitioner, who Björn says was understanding from day one, did a pots test
- The doctor then referred me to a specialist at Malmö General Hospital named Artur Fedorowski. He did a tilt test on me. When I was lying down, my blood pressure was normal. But when I got up, it dropped from 130/70 to 90/60. Oxygenation also fell sharply. I felt sick and was fainting.
Artur Fedorowski prescribed blood pressure stabilizing medicine to Björn, among other things. He got a little better and in the spring of 2018 came a happy moment
- I could get up and sit in the wheelchair and watch my children while they played. It was absolutely amazing.
During her googling, Sara found an article about immunoadsorption, removal of specific blood group antibodies from the blood, and asked Fedorowski if it was possible to try in Sweden.
Fedorowski then referred to Jonas Axelsson at Karolinska Hospital (now also an ME doctor at the Amelie Clinic). Sara called Jonas for profit and loss. A stroke of luck. Jonas said yes and in the autumn of 2018 they met.
- It was almost scary to meet him. Sure, Fedorovski understood what I was talking about, but this was a completely different level. When I started a sentence, Jonas finished it. He understood the disease in a way that no one had done before.
Got new medicine from Jonas
Jonas put in a new medicine, otezla, and in just one month it made a big difference. Björn could start moving and even went to visit his brother in Gothenburg.
But just like two years before, there was a huge crash during the Christmas celebrations in Sala.
- In January 2017, when I was at my worst, I thought I had to take my own life. Two years later, in January 2019, the same thoughts came. I felt really bad.
Sara said they need to talk to Jonas. Now it was harder to get time. But in the end the meeting came. Jonas Axelsson explained the crash and then put in three different types of antiviral drugs, valganciclovir, ritonavir and isentress
- Exactly on May 17, 2019, on my 40th birthday, it started to turn around. After my children, it is the best gift I have ever received.
Björn could go with the family to Denmark on holiday. He and Sara went to Backen's amusement park with the children. They slept in hotels and bathed in the sea
- In all their lives, the children had never seen me other than sick. They had seen me lying inside the dark room and if I was ever outside the room I was in a wheelchair. Now they thought it was magical that Dad could join. I do not need to say that I also thought so, says Björn.
In June 2020, Björn was able to start work training. And train a little easy. Then work a few more hours. And train a little more. He says that he was lucky with the administrators at both the Swedish Social Insurance Agency and the Swedish Public Employment Service. They let him step up at his own pace.
He also says that he has the best wife imaginable.
- Sara has struggled and arranged so much for me. And she never gives up.
Looks different on life
Björn continued to increase the number of hours at his school job. Eventually, just as before his illness, he was able to start working full-time as a gymnastics teacher. In a short time, he went from walking 20 steps a day to walking 12,000 to 25,000 steps a day. Now, in November 2021, he also goes to the gym and practices swimming. He has not felt so fit since he turned 30 years old.
Björn says that his mother and aunt have the autoimmune disease hypothermia. This is when the thyroid gland produces too little thyroid hormone so that the body's metabolism becomes slower. Many with ME have close relatives with autoimmune diseases.
Now Björn is taking the medicines otezla, valganciclovir and ritonavir. He says this time has been an emotional roller coaster
- But now I feel very good. I look at life differently after what happened to me. I no longer get annoyed at small things. Mentally, it probably also takes a lot to upset me.
He recently received an offer to become head coach of the traditional swimming club Kristianstads SLS. Something he agreed to. He will start the new job in January
- It will be very exciting and fun, says Björn Sjöberg.
Meds that helped him:
-Three different types of antiviral drugs, valganciclovir, ritonavir and isentress
5 months after beginning the treatment!?
"January 2019, the same thoughts came. I felt really bad.
Sara said they need to talk to Jonas. Now it was harder to get time. But in the end the meeting came. Jonas Axelsson explained the crash and then put in three different types of antiviral drugs, valganciclovir, ritonavir and isentress
- Exactly on May 17, 2019, on my 40th birthday, it started to turn around. After my children, it is the best gift I have ever received.
Björn could go with the family to Denmark on holiday. He and Sara went to Backen's amusement park with the children. They slept in hotels and bathed in the sea."
------
Björn Sjöberg was so ill that he was forced to live in his own dark room in the house in Åkarp just outside Malmö. A room he rarely left.
In the room next door, his three-year-old twin boys Hannes and Bastian played
- It was a terrible time. My dream was to be able to build Lego with the boys, but it was completely unthinkable, says Björn.
Now he, with the help of ME doctor Jonas Axelsson, is completely healthy.
Björn Sjöberg went on a real flu in 2008. He had a fever of over 40 degrees for two weeks and his stomach was full. He had to go to the hospital and was examined for gastrointestinal disease ulcerative colitis.
- It ended with me being diagnosed with IBS. But something happened to the body that time. I, who felt so good about exercising, had to stop, the body was torn down instead of being built up. I also had to start opting out of things in my everyday life when the energy was not enough.
The years went by and Björn stayed at about that level. Not good at all. But not a real disaster either.
- In September 2016, I was with the job in Florida. Then I completely covered. I could not walk and was left lying in the room. In the end, the comrades had to drive me to the airport and put me on a flight to Sweden.
He was incredibly tired when he came home to Sweden. Then the body turned off completely. Björn could not get up and it stuck in his arms and hands numb. The eyes were dry and the mouth was full of blisters.
Found nothing
He was taken to the hospital and there was mostly nothing found. "Only" protein, a sign of disease activity, in the spinal fluid
- My father died in March that year and I thought I went into the wall. I was so bad that I do not remember much of that time, it's mostly a gray fog.
Björn was referred to the neurologist in Lund who said that everything indicated that he had ME / chronic fatigue syndrome
- I had never heard of it and just said ok. Then I asked if there was a chance to get well. He replied that there was. I would start with CBT, start training calmly and then increase the training gradually.
Björn's wife Sara then worked at the Swedish Social Insurance Agency and had come into contact with ME. She became desperate, saying it was a life sentence. She further said that he was absolutely not allowed to train, that it was completely wrong. The doctor also gave the go-ahead for Björn to go away to Sara's parents over Christmas 2016.
- In Sala, with Sara's parents, the super crash came. I became so terribly ill that I could not make a sound. I also got a very severe nerve pain, mostly in my arms and legs. I also became sensitive to sound and light.
At home in Malmö, the family was forced to get a wheelchair and set up their own room for Björn. There he spent, for the most part, the whole of 2017. There were some excursions. Mostly to the toilet and sometimes to the hospital. But also three times to Sandnes in western Norway to get the medicine Rituximab
- But Rituximab was not a plus for me. I was catastrophic after every trip.
Got to do pots test
Björn could not bear it. Sara googled and read a lot about her husband's illness. She looked for pots and Björn's general practitioner, who Björn says was understanding from day one, did a pots test
- The doctor then referred me to a specialist at Malmö General Hospital named Artur Fedorowski. He did a tilt test on me. When I was lying down, my blood pressure was normal. But when I got up, it dropped from 130/70 to 90/60. Oxygenation also fell sharply. I felt sick and was fainting.
Artur Fedorowski prescribed blood pressure stabilizing medicine to Björn, among other things. He got a little better and in the spring of 2018 came a happy moment
- I could get up and sit in the wheelchair and watch my children while they played. It was absolutely amazing.
During her googling, Sara found an article about immunoadsorption, removal of specific blood group antibodies from the blood, and asked Fedorowski if it was possible to try in Sweden.
Fedorowski then referred to Jonas Axelsson at Karolinska Hospital (now also an ME doctor at the Amelie Clinic). Sara called Jonas for profit and loss. A stroke of luck. Jonas said yes and in the autumn of 2018 they met.
- It was almost scary to meet him. Sure, Fedorovski understood what I was talking about, but this was a completely different level. When I started a sentence, Jonas finished it. He understood the disease in a way that no one had done before.
Got new medicine from Jonas
Jonas put in a new medicine, otezla, and in just one month it made a big difference. Björn could start moving and even went to visit his brother in Gothenburg.
But just like two years before, there was a huge crash during the Christmas celebrations in Sala.
- In January 2017, when I was at my worst, I thought I had to take my own life. Two years later, in January 2019, the same thoughts came. I felt really bad.
Sara said they need to talk to Jonas. Now it was harder to get time. But in the end the meeting came. Jonas Axelsson explained the crash and then put in three different types of antiviral drugs, valganciclovir, ritonavir and isentress
- Exactly on May 17, 2019, on my 40th birthday, it started to turn around. After my children, it is the best gift I have ever received.
Björn could go with the family to Denmark on holiday. He and Sara went to Backen's amusement park with the children. They slept in hotels and bathed in the sea
- In all their lives, the children had never seen me other than sick. They had seen me lying inside the dark room and if I was ever outside the room I was in a wheelchair. Now they thought it was magical that Dad could join. I do not need to say that I also thought so, says Björn.
In June 2020, Björn was able to start work training. And train a little easy. Then work a few more hours. And train a little more. He says that he was lucky with the administrators at both the Swedish Social Insurance Agency and the Swedish Public Employment Service. They let him step up at his own pace.
He also says that he has the best wife imaginable.
- Sara has struggled and arranged so much for me. And she never gives up.
Looks different on life
Björn continued to increase the number of hours at his school job. Eventually, just as before his illness, he was able to start working full-time as a gymnastics teacher. In a short time, he went from walking 20 steps a day to walking 12,000 to 25,000 steps a day. Now, in November 2021, he also goes to the gym and practices swimming. He has not felt so fit since he turned 30 years old.
Björn says that his mother and aunt have the autoimmune disease hypothermia. This is when the thyroid gland produces too little thyroid hormone so that the body's metabolism becomes slower. Many with ME have close relatives with autoimmune diseases.
Now Björn is taking the medicines otezla, valganciclovir and ritonavir. He says this time has been an emotional roller coaster
- But now I feel very good. I look at life differently after what happened to me. I no longer get annoyed at small things. Mentally, it probably also takes a lot to upset me.
He recently received an offer to become head coach of the traditional swimming club Kristianstads SLS. Something he agreed to. He will start the new job in January
- It will be very exciting and fun, says Björn Sjöberg.
