Jesse pensaba que la FOTOFERESIS podía ayudarle a resetear su sistema inmunológico y restaurar la tolerancia, teniendo en cuenta los hallazgos de Mark Davis sobre los linfocitos T . Diversos estudios revelan resultados prometedores en enfermedades mediadas por células T.
Además, en los últimos posts relata su última visita con el Dr. CHIA, cuya hipótesis es que los ENTEROVIRUS desencadenan el SFC en un grupo importante de pacientes y actualmente trabaja con Maureen Hanson en un estudio del Centro de Investigación Colaborativo financiado por el NIH.
Pongo la transcripción completa de algunos comentarios del Dr. Chia y respuestas a preguntas del paciente:
1.How can I differentiate between primary POTS or primary ME/CFS?
Symptoms depend on where the viral RNA is located in brain tissue
2. Can Coxsackie B4 cause POTS as a standalone condition?
Yes if it affects a certain part of the brain stem
3. Is a gradual return to exercise using a recumbent bike and light weights appropriate for my case?
Yes careful exercise is ok but caution is necessary since people can relapse from intense cardio. One should wait for 6 months after being symptom free before returning to full activity.
4. Might photopheresis help the immune system respond better to a chronic Coxsackie B4 infection? Or help reduce the autoimmune reaction?
No. It will not help clear most the actual virus since it's in tissue, although it may help with virema in white cells. However symptoms are not caused by the actual viral RNA, it's the immune response and how it affects organ function (e.g. brain, heart, muscle).
So if photopheresis modulates the immune system in the right direction it could in theory produce a remission even if the viral RNA is still present.
5. Would a cocktail of various ARVs be more effective than just Tenofovir or Lamivudine alone against Coxsackie B4?
He doesn't know, he's still tabulating the results of his tenofovir patients.
6. What are your thoughts on GcMAF?
We got sidetracked and I did not get to this question.
7. Any update on the Coxsackie antivirals from Belgium?
The team in Belgium is being tight lipped, but Dr Chia is going to visit them in June, present his paper on Coxsackie virus and colon cancer, and try to get an update on their antiviral research.
OTROS COMENTARIOS
Dr Chia is working with Maureen Hanson. He is hoping that she will share his findings with Dr Lipkin, and that Dr Lipkin's new viral sequencing tool will be able to detect the very small amounts of enterovirus particles that show up in patient blood.
He doesn't think the fecal matter transplant trials will very useful because it will not clear enteroviruses from the intestinal wall.
He is very happy the NIH is researching enterovirus infections in tissue.
He believes photopheresis is a promising treatment, thinks that it may be helping, me and hopes it will continue to help. It was his first time learning about it in depth, and it was fun to explain it to him (as he is always explaining things to me). He was very open to learning more and interested to know how exactly it worked.
He thinks ozone / UBI works in a similar way in part by destroying white blood cells so that new healthy ones can be produced. He thinks it's important to shift the Th orientation of the immune system.
He believes that the new T-cells produced in the thymus (after photopheresis) will not have the pathological clonal expansion that the ones being deactivated by photopheresis have.
He does not think photopheresis is a cure (because it does not get rid of the enteroviral RNA in tissue), but thinks it may help reduce symptoms and perhaps induce remission.
We again discussed Dr Mark Davis' work and the possibility of using CAR T-cell therapy to treat immune cells so that they can respond to chronic enteroviruses. He is confident that Davis will find enteroviruses as the mystery antigen and that Lipkin will confirm
He thinks more clinical trials should be done instead of all the theoretical research.
He said that low dose IVIG is often more effective than high dose. He spoke of a severe POTS patient who was cured after one one low dose of IVIG.
He said high dose IVIG can make some people worse (gave an example of a severe Lupus patient with a likely enterovirus infection), and require that they get plasmapheresis to clear out the excess IgG
Mentioned that interferon is likely the cytokine that produces fatiguing symptoms. Said a certain percentage of Hep C / B patients treated with interferon will go on to develop something very similar to ME/CFS.
He said that there are two acute infections that can shift the immune response back into a healthy state: influenza and human respiratory syncytial virus (RSV). He said that he had an ME/CFS patient who was very ill, got an RSV infection and went into full
remission (which lasted for at least 5 years, last time they spoke).
He said it was a good sign that I got a fever last week (due to the flu) and that my immune system is starting to respond in a normal way again.
He does not think enteroviruses destroy tissue or cause permanent organ damage (in most cases). He thinks that instead they impair function by producing immune inflammation. He says that the immune inflammation is of a different type than traditional autoimmune diseases (eg MS, RA, Crohn's), and that it also does not cause permanent tissue damage.
He said my throat and abdomen still show some signs of a enterovirus infection (even though I have no symptoms in either location).
He said my complexation, eyes, and alertness are better than the last time I saw him but that I'm still a bit pale.
He would like to do another viral panel in 5 months, and possibly a stomach biopsy
He is familiar with my POTS cardiologist Dr David Cannom and is open to his POTS pharmacological treatments to improve functionality.
He said my symptom picture (shortness of breath and lightheadedness) is relatively rare in his patients (he sees more cognitive dysfunction, PEM, and mental fatigue)
He reaffirmed that he believes HBOT likely helps cognitive function.
Este es el hilo :
http://forums.phoenixrising.me/index.ph ... 60/page-17
Siento no estar en condiciones de traducirlo.
Abracitos
