The super awesome Not Dead Yet! made a post mentioning interferon, an immune treatment, not long after I found a study where a chronic case of persistent EBV was treated with it. https://pubmed.ncbi.nlm.nih.gov/9703010/
And there was ANOTHER study done with a similar cytokine based treatment where the majority of adults in the study were cured from their fatigue/malaise. https://pubmed.ncbi.nlm.nih.gov/12393655/
THERE IS HOPE, PEOPLE ARE GETTING TREATMENTS. WE CAN TOO. These treatments will almost definitely improve symptoms if not make them go away depending on severity. The vast majority of successful cases I see involve some type of immune treatment.
The second treatment is in phase 3 trials but they have an expanded access protocol and have given over 100 treatments since the original study. You just have to show there is some rationale in relation to the symptoms being ebv related. I'm seeing my doctor tomorrow to send them an email with all my labs and symptom history, and my plan b is interferon.
I am realizing the problem isn't the virus as much as it is our compromised immune response.
My advice is get blood tests for ebv antibodies (mononucleosis test) because I know for a fact we ALL have high ebv antibody levels. The main criteria they seem to use for chronic fatigue/ebv is VCA-IGG antibodies but also EBNA-IGG antibodies.
FOR INTERFERON:
Most insurances cover interferon I believe. If you show your doctor the first study and say you want to try a maintenance dose(1 x 10(5) U/kg subcutaneously 3 times per week) of interferon alpha for 3 weeks or so I don't see why they wouldn't give us a chance.
FOR EBV CTL THERAPY:
Basically get all your data together, (symptom history, ebv antibody blood tests, sore throat pictures etc.) and tell your doctor to send them an email about getting the treatment to help improve the chronic fatigue/malaise symptoms.
- page for the open expanded protocol https://www.atarabio.com/expanded-access/?back_to=patients
- clinical trial page for ebv-ctl therapy https://clinicaltrials.gov/ct2/show/NCT02822495?term=Atara+Biotherapeutics&draw=2&rank=6
their email ClinicalStudies@atarabio.com
It's pure BS that these treatments exist and we aren't using them, let's get better together
. Interferon has a little toxicity but generally well tolerated at that dosage. And ebv-ctl's had no observed toxicity. So they are both relatively safe! Let me know if I missed anything.
And there was ANOTHER study done with a similar cytokine based treatment where the majority of adults in the study were cured from their fatigue/malaise. https://pubmed.ncbi.nlm.nih.gov/12393655/
THERE IS HOPE, PEOPLE ARE GETTING TREATMENTS. WE CAN TOO. These treatments will almost definitely improve symptoms if not make them go away depending on severity. The vast majority of successful cases I see involve some type of immune treatment.
The second treatment is in phase 3 trials but they have an expanded access protocol and have given over 100 treatments since the original study. You just have to show there is some rationale in relation to the symptoms being ebv related. I'm seeing my doctor tomorrow to send them an email with all my labs and symptom history, and my plan b is interferon.
I am realizing the problem isn't the virus as much as it is our compromised immune response.
My advice is get blood tests for ebv antibodies (mononucleosis test) because I know for a fact we ALL have high ebv antibody levels. The main criteria they seem to use for chronic fatigue/ebv is VCA-IGG antibodies but also EBNA-IGG antibodies.
FOR INTERFERON:
Most insurances cover interferon I believe. If you show your doctor the first study and say you want to try a maintenance dose(1 x 10(5) U/kg subcutaneously 3 times per week) of interferon alpha for 3 weeks or so I don't see why they wouldn't give us a chance.
FOR EBV CTL THERAPY:
Basically get all your data together, (symptom history, ebv antibody blood tests, sore throat pictures etc.) and tell your doctor to send them an email about getting the treatment to help improve the chronic fatigue/malaise symptoms.
- page for the open expanded protocol https://www.atarabio.com/expanded-access/?back_to=patients
- clinical trial page for ebv-ctl therapy https://clinicaltrials.gov/ct2/show/NCT02822495?term=Atara+Biotherapeutics&draw=2&rank=6
their email ClinicalStudies@atarabio.com
It's pure BS that these treatments exist and we aren't using them, let's get better together
. Interferon has a little toxicity but generally well tolerated at that dosage. And ebv-ctl's had no observed toxicity. So they are both relatively safe! Let me know if I missed anything.
