Saturday, April 21, 2012

We are the Pioneers but we won't be cured

The older ones of us with little-understood neuroimmune diseases like Myalgic encephalitis had some hope last year of a cure when XMRV was thought to be the cause and anti-retrovirals the potential cure.  However we have to face reality.  The potential treatment called Rituxan is the latest hope on the horizon but we are privileged to have our fellow sufferer Dr Jamie Deckoff-Jones to tell it like it is.

If Rituxan works for ME/CFS, that’s 4 million people in the US alone who need a drug that can cost upwards of $20,000 per round of treatment, including the high level of care needed to administer safely; it probably will need to be given twice a year, must be continued forever and carries a significant risk with each infusion. For fun, that would be $80 trillion dollars per year for us all to get treated. The drug is apparently much cheaper in the UK; it is going out of patent in 2015, so it will be cheaper in the US as well, but that also means there will be no funds to study it for us. The point is, it is not a sustainable model, this drug or another expensive palliative treatment. Nor would antiretrovirals have been had they worked very well. Too many people. And it’s not just this cohort, but several huge cohorts. Wouldn’t it make more sense at this point to figure out why so many people are getting sick with immunological diseases, rather than blindly killing everybody’s B cells? 

Read More from Jamie's blog

In addition to the cost issue, there is reaction to the treatment itself.  anti-retrovirals cause terrible chaos in the body as the battle against the retrovirus rages and Rituximab I see is a drug they use to treat Lymphoma (non-Hodgins) just like Dad had.  In other words it is chemotherapy.  There have been studies that reveal anomolies with our B-cells, I can't remember what - elevated possibly - so there is a link with Lymphoma already hypothesized and statistically there is a connection with ME in some studies (but I can't remember what).  Anyway, the point is that the treatment is likely to make us much sicker than we already are.  It is the same with Lyme Disease.  The antibiotics stir it up and savvy doctors put their patients on Doxycycline for a month before they are even tested for Lyme so that it is more likely to show up in the $3000 blood tests.

I was sorry to read that Patrick Wylie Kelly was lost just in the last few days to Lyme, pain and depression.  And I see too via Monique Martens that the political climate surrounding Lyme disease is in turmoil in Belgium as well as the USA.  

There have been a couple more TV segments recently about Lyme disease in young children.  It is not far off becoming a political issue here. It is now being passed on to offspring via their parents - sexually. I know that one of the STD's is also a spirochete (type of organism). 

An online friend's daughter who got Lyme on a Girl Guide camp is now being distressed by the Guide movement's warning to her not to name them in any future TV episodes.  She has worked for 4 years to become a Queen's Guide and is only a few weeks away from that while the very movement she loves is now treating her as an enemy.  The poor kid, as if she hasn't got enough to deal with.

I have also heard of someone's hubby having to now report any tick bites on the job.  Time, date etc.  

I am feeling somewhat better today :)  

I'd like to base my treatment on biochemical testing

This looks like a good idea for anyone with needle phobia, for getting blood drawn, getting tattoos

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