Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)

ChookityPop

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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.
 

Hip

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Very interesting recovery story.

The Amelie Clinic (Ameliekliniken) has a website here: https://www.ameliekliniken.se

Looks like the ritonavir antiviral prescribed by Dr Jonas Axelsson at the Amelie Clinic has anti-Epstein-Barr virus effect, according to this paper.

Thus perhaps this combination of ritonavir plus valganciclovir that Dr Axelsson uses has better efficacy against EBV-associated ME/CFS than valganciclovir alone.

The article does not mention if the patient Björn Sjöberg was tested for viruses; it would be interesting to know if the Amelie Clinic do virus tests on their patients.

But perhaps anyone with EBV-associated ME/CFS might look into the ritonavir + valganciclovir combo.



The Amelie Clinic talks about paraviral diseases (see this page):
Ever since antiquity, medicine has known that infections sometimes give rise to long-lasting and elusive symptoms. Although our understanding of the underlying mechanisms of the disease has improved since then, today's patients often experience great difficulty in being taken seriously for similar symptoms
 

Treeman

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Reading the link to the Swedish article above, the Dr. who treated Björn Sjöberg was Jonas Axelsson. It reported in the link the following;


"In the book "From bed bound to marathon or the great ME scandal", Jonas told us that he sees biochemical abnormalities in this patient group's blood test. At least in 95 out of 100 cases.

In the past, you have said that you take a lot of blood samples, even urine samples, look at them, talk to the sick and then make an assessment based on this. Which treatment, which medication or medications you use, is thus determined by both samples and what the patient tells you?

Each virus has its pattern

– The goal is to identify, if possible, which virus is involved. There, the patient's story is very important, but it is confirmed by the blood tests. Each virus has its pattern in the samples, and it is from this that we treat when we can. Some viruses there is (as yet) no treatment for and for these you would have to do treatment studies with medications intended for other viruses, but it is too expensive and complicated for us – and would probably not be granted ethical permission with the current paradigm.

Here at the ME online magazine we told him last week about Teemu Vikören and that he got well from Rituximab. But now you show that ME sufferers can get healthy with the help of other medications. Can you explain?

–Each virus has one or more cell types (e.g. cells in the mucous membranes of the respiratory tract) that it is able to invade, and in these – or at least a subset of these – the virus can also multiply and spread. In addition, many viruses also have a small number of cell types where they are able to stay for a very long time ("establish latency"). Common examples are chickenpox viruses (latency in neurons), Epstein-Barr virus (blood B cells), cytomegalovirus (bone marrow stem cells), human papillomavirus (mucous cells) and HIV (some of the blood T cells).

Unbridled cell division

– Because latency can lead to unbridled cell division of the host cell, viruses are a possible cause of cancer. In the event that such a cancer has targeted treatment, it is also possible to use it as a treatment for the virus even in patients who do not develop cancer but carry the virus. In the case of EBV, a small percentage of carriers get lymphoma due to unbridled division of B cells. Rituximab (Mabthera) has therefore been developed that specifically knocks out B cells, both those that divide uninhibitedly (cancer) and "common" (with or without viruses in). If used in a patient with EBV latency in B cells, a large proportion of the virus in the body will disappear at each dose. If you do not carry EBV, the B cells of rituximab disappear, which can cause a weaker immune system for several months and then lead to worsening of other viral infections.

"As seen above, diagnostics are therefore absolutely crucial to be able to treat paraviral illnesses, and it is therefore so frustrating that we cannot/must not use the modern tools developed with taxpayer funds (I am thinking of so-called metagenomic sequencing via SciLifeLabs and Virologen at Karolinska Hospital)."

How Jonas found his way to the medications - Björn Eklund (bjorneklund.se)
 
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Learner1

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Gammaglobulins - .75g/kg body weight every 3:weeks for 4 years

Rituximab - 1g - 5 infusions over 9 months - discontinued due to pandemic

Valganciclovir - two 450mg pills 2x daily for 12 months, then 1 450mg pills 2x daily for 8 months. 2 years later after HHV6 reactivation same protocol.

Famciclovir - added to valganciclovir on round 2 - 3 500mg pills daily for 6 months.
 
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Gammaglobulins - .75g/kg body weight every 3:weeks for 4 years

Rituximab - 1g - 5 infusions over 9 months - discontinued due to pandemic

Valganciclovir - two 450mg pills 2x daily for 12 months, then 1 450mg pills 2x daily for 8 months. 2 years later after HHV6 reactivation same protocol.

Famciclovir - added to valganciclovir on round 2 - 3 500mg pills daily for 6 months.
Do you think you needed the famciclovir on top of the valganciclovir, or was it just added as a precaution?
 

heapsreal

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Do you think you needed the famciclovir on top of the valganciclovir, or was it just added as a precaution?
I know when valcyte was at its peak, 10yrs ago, many thought valcyte wasnt hitting ebv enough. I think a few went from valtrex or famvir to valcyte and ebv titres went up although valcyte did knock cmv and hhv6 around. That was the broscience then.
 

Learner1

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Do you think you needed the famciclovir on top of the valganciclovir, or was it just added as a precaution?
HHV6 PCR did not budge from positive in 3 months of valganciclovir this second time, so my specialist added the famciclovir, which moved it to negative. The HHV6 foundation told me famciclovir wouldn't work on HhV6, but it did.
 

Learner1

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I had a positive HHV6 PCR test. Because I get IVIG, antibody titers do not work on me, because I am getting the blood donor antibodies. Additionally, before I went on IVIG, my antibody production was insufficient and my Epstein Barr was missed because multiple doctors only ran antibody titers. It wasn't til my ME/CFS specialist ran an EBV PCR test that I was diagnosed, and then prescribed the valganciclovir which greatly helped.
 

ChookityPop

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I had a positive HHV6 PCR test. Because I get IVIG, antibody titers do not work on me, because I am getting the blood donor antibodies. Additionally, before I went on IVIG, my antibody production was insufficient and my Epstein Barr was missed because multiple doctors only ran antibody titers. It wasn't til my ME/CFS specialist ran an EBV PCR test that I was diagnosed, and then prescribed the valganciclovir which greatly helped.
Thats awesome you valganciclovir helped! How did you find out you had insufficient antibody production?
 

EtherSpin

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I know when valcyte was at its peak, 10yrs ago, many thought valcyte wasnt hitting ebv enough. I think a few went from valtrex or famvir to valcyte and ebv titres went up although valcyte did knock cmv and hhv6 around. That was the broscience then.
in your experience (your own plus chatting with others) are there many who were gradually taken down by a succession of such viruses ?
e.g. mine goes EBV as kid doing nerve damage, unidentified virus 14 years later confuses docs with EBV numbers though they said isnt possible, begins fatigue and brain fog, shingles 2 years later doubles the levels, CMV 2 years later triples everything to not possible to work or socialise anymore + Orthostatic intolerance becomes overt and POTS is diagnosed along with CFS

do loads of PWME have that history of at least 2 - 3 herpes family viruses or are there significant numbers who just had EBV or CMV when things started ?

famvir was the only one I ever got a doctor to humour and just one course at a standard dose. not enough time for anything to occur.
 

heapsreal

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in your experience (your own plus chatting with others) are there many who were gradually taken down by a succession of such viruses ?
e.g. mine goes EBV as kid doing nerve damage, unidentified virus 14 years later confuses docs with EBV numbers though they said isnt possible, begins fatigue and brain fog, shingles 2 years later doubles the levels, CMV 2 years later triples everything to not possible to work or socialise anymore + Orthostatic intolerance becomes overt and POTS is diagnosed along with CFS

do loads of PWME have that history of at least 2 - 3 herpes family viruses or are there significant numbers who just had EBV or CMV when things started ?

famvir was the only one I ever got a doctor to humour and just one course at a standard dose. not enough time for anything to occur.
Thats pretty much me. Issues with cmv, ebv and varicella. Also i think theres bacteria involved as i respond to abx.