Just saw my doctor yesterday. He says even though my PCR is now negative after antiviral treatment, he wants to test it again a few times over the next few months to be sure it stays negative.by the way, not sure if a blood PCR done after a course of Valacyclovir will show any EBV....
yes Ginger it has anti-viral, anti-bacterial properties, immunomodulator and more! I wonder if ME/CFS patients have done extensive trials with it? Did you do?
Sorry for my late response. I was hospitalized a month ago during 4 days.
The hospitalization was a nightmare. I saw two psychiatrist and two psychologists...
A neuro told me I have a functional disorder and If i want immune modulating treatment, I have to go abroad.
My internist doctor who is convinced I have ME is blocked. He prescribed photopheresis treatment and contacted two centers to perform the procedure. The first center who use a dissociated system was okay, but the hospital refused (because the cost of the procedure is charged to the hospital).
He contacted an other center who perform the procedure with à therakos system and they refused because it costly and off label.
My family proposed to pay the treatment but it's refused.
My doc put me on azathioprine 150 mg/day and propanol for POTS the time we find an other solution... We contacted the president of the French Scientific comitee of CFS, I say I have no proof this treatment will work and it's costly..
My condition deteriore to the point I am bedridden most of the time.
Thanks for the link @pattismith
I looked studies about photopheresis cost and it's HIGH (4000 francs suisses / traitement LOL).
I will have the response soon to a Moroccan private clinic who perform this treatment.
If it is ok, I will fly to Morroco ...
We have the same equipment at 50 kilometers of my home, but no.
Did you know Jean Dominique de Korwin Patti ?
unfortunately it's the same in most countries, and only a few serious CFS/ME specialists are doing a great job worldwide.This man représente the main problem of ME recognition in France.
They don't take the disease seriously and recommend to physician to don't do extensive tests for people because it is costly.
When I see the complexity of our disease and the number of differential diagnosis, I think ils se foutent de notre gueule
That's a very interesting result, thank you for sharing.I received my Pet scan results yesterday and the report state :
The exam show several mild hypoperfusion areas
- bilateral occipital cortex
- primary occipital cortex : right
- right temporal cortex and mild left temporal cortex
My brain MRI is normal. I have attached the results.
What do you think about these results ?
My internist doctor can't interpret the results,
Source: https://pubs.rsna.org/doi/full/10.1148/rg.343135065Positron emission tomography (PET) with 2-[fluorine-18]fluoro-2-deoxy-D-glucose (FDG) is a highly useful imaging modality for the diagnosis of neurodegenerative disorders (1–6). FDG is an analog of glucose, the main energy substrate of the brain. After uptake and phosphorylation by hexokinase, FDG becomes trapped in neurons, allowing imaging and measurement of the cerebral metabolic rate for glucose. This is closely related to neuronal and synaptic function in numerous human resting and functional activation studies (1–3). Characteristic patterns of altered metabolism seen at FDG PET can markedly improve the clinical diagnosis for specific types of dementia such as FTD, Alzheimer disease, and DLB, each of which has characteristic metabolic signatures, although there is some overlap. An essentially normal or preserved cerebral uptake pattern can also help distinguish reversible pseudodementia due to depression from a primary neurodegenerative syndrome (12,13). Recognition of the common patterns of altered cortical metabolism seen in these various entities is crucial for identifying the cause of cognitive impairment. With use of proper technique, and with the increasing availability of computer-assisted diagnostic (CAD) statistical mapping tools, the neuroimager can play a key role in the workup of patients with cognitive impairment.