Your test (which I think would have been high-throughput sequencing, the test that Lipkin uses) may be touted to test for all viruses at once, but I am doubtful it would detect enterovirus infections in the brain via a CSF test, as Dr Chia says enterovirus is often not found in the cerebrospinal fluid, even when there is an acute enterovirus brain infection, let alone a chronic enterovirus infection of the brain (which is much more subdued than acute). See this quote from Dr Chia:
If you test brain tissue for enterovirus (not possible except in post-mortem), then you might get a positive result from high-throughput sequencing. This is what Prof Lipkin told me by email: he told me that his high-throughput sequencing would not detect chronic enterovirus infection via a blood sample, it can only detect it if you use a sample of the actual infected tissue.
Prof Lipkin does not believe enterovirus can cause ME/CFS, so he has no interest in this virus. It's Dr John Chia who is the enterovirus ME/CFS expert.
Where you tested by Dr Chia at ARUP Lab for high coxsackievirus B and echovirus antibodies?:
The test was VirCapSeq-VERT. It allegedly can even detect viruses with up to 40% novel DNA. I have heard there is a metabolomics and proteomics component to Lipkin’s test but no one could tell me more at the time. I’m still waiting on results. The DeRisi test was similar except it included testing for all known fungal infections as well. Had I tested positive for several things then there would be suspicion that a white blood cell was lysed and the DNA was latent virus within the WBC, but I only had one hit. I still thought it was
I haven’t been tested by Dr Chia since I know I have many many infections already (including brucellosis, I was a vet med background in college so I have very high animal exposure and several zoonotic infections). I haven’t heard of people being able to get rid of enteroviruses so I didn’t pursue testing beyond antibody levels. I have been tested for that at ARUP through Peterson several times a year. Like with most of my infections they flare every few months. Trying to treat infections in me has been fairly fruitless. I have high IGM for mycoplasma infection so very clear current infection. Antibiotics for months did not touch it. Also I’ve been hospitalized with c diff so many times now that I cannot take any antibiotics.
If your issue was chronic active HHV-7, then Valcyte may be ineffective against this virus. See
this thread.:
Yes, Dr Peterson and Kaufman know this but they wanted me to start with the drug that is easiest to take. I think they were also wanting to buy time for me to get IVIG (so I could take it concurrently with antiviral treatment) but insurance is still fighting that.
I was not a fan of Valcyte for that exact reason. All the research I found said it was very weak against HHV-6 and pretty much useless against HHV-7. But it is easier on the kidneys than Vistide or Foscarnet (and is a pill instead of IV) so my specialists said they wanted me to try Valcyte first. Also foscarnet is an IV twice a day and is very hard to tolerate while Vistide is an IV on days 1 and 8 and then once every 2 weeks with safety labs before each dose.
Was this 10 year encephalitis diagnosed by a doctor? Were you repeatedly tested for HHV-7 in the CSF over many years, and were always positive?:
This is spinal fluid from 2017 and tissue samples tested several years apart 2013-2019 (some was frozen and then thawed). I have always been positive in CSF and tissue but always negative in the blood (which has been tested 3-4 times/ year). I’m getting more spinal fluid drawn soon and will be testing that before and after the Vistide. We will never know 100% if the hhv7 was the high fever in 2011 but both my ME/CFS specialists and the head of infectious disease and head of neurology at my hospital think this to be the case and I strongly agree.
I also have scans showing the brain damage over the years. I haven’t tested this again after Valcyte but I’m not sure it’s worth the money because I want to try Vistide no matter what. I can’t give up on the possibility of reversing the brain damage until I’ve exhausted all possible treatments.
Were these organ failures also diagnosed by a doctor?:
Yes. I was hospitalized many times throughout my twenties. My gallbladder stopped responding to CCK when I was 23 and I was throwing up 3-4 times a day/ night for 6 months. I was accused of being bulimic and doctors refused to run further tests. I finally managed to get them to run an ultrasound, which showed the inflammation and I was immediately sent for a HIDA scan, which showed my gallbladder was less than 20% functional. They surgically removed it right away and I was able to eat again.
Two years later the same happened to my liver. Doctors refused to run tests and I was in so much pain I could not stand or speak. Finally contrast CT showed how inflamed my liver was and everyone was shocked. The doctors at the hospital said it had every indication of viral hepatitis but I was negative for all the hepatitis viruses they can test for. Every doctor I have spoken too, including the head of infections disease at my hospital, now agree that it was the HHV-7 taking root in different organs.
Several times I have also gone through bouts of ascending viral colitis, enteritis, and gastritis. I have been hospitalized several times with c diff and HHV-7 colitis at the same time (tested via PCR with colonoscopy and endoscopy). I have been in septic shock and was considered likely to die at multiple points but eventually turned around by the second week in the hospital. I only came close to death the first time because they did not believe me and I wasn’t admitted until my blood showed undetectable levels of oxygen and my white count was over 19.
Now I am finally believed immediately at the ER and I can get admitted to the hospital right away and get supportive care before any organ starts to shut down. I would not have had such problems if treatments hadn’t been delayed due to doctors initially saying that it was impossible for these things to happen at my age.
I still cannot drink or take medications processed through the liver without triggering hepatitis pain but overall my liver seems mostly recovered.
During the acute infection phase, enterovirus can often cause fevers lasting two or even three weeks. See this
enterovirus MEpedia article for the acute symptoms of enterovirus:
I suppose it’s possible it was one of the enteroviruses I had but my gut feeling is that it was the HHV-7. It is more destructive to brain tissue than HHV-6, according to researchers studying it. I have quantitative EEGs from 4 years showing progressive brain damage from year to year.
I do still have enteroviruses but I’m not sure how much of a role they are playing, along with the brucellosis, mycoplasma, and other infections that wax and wane in my blood.
I’m trying to get the interest of HHV-7 researchers to study me. Someone may be willing to sequence my virus to see it it came from a human or an animal. I doubt this has any effect on treatment but I’d like to contribute to the study of the virus as very little research has been done on it.
