As I wake up this morning feeling like a wrung-out dish cloth, it's time for another ME-related, where do we go from here post. 'Normals' can look away now if they don't want to know the score.
My favourite writer/researcher on ME is Dr David Bell. Click here for his excellent website. He focuses on the issue of low blood volume and orthostatic intolerance, which I believe is key. He has discovered that many PWME have reduced blood volume, some as low as half of what we are supposed to have. If you lost 40% of your blood in a car crash, you'd die. If you lose that slowly over time (in ME) you feel like the living dead.
My favourite writer/researcher on ME is Dr David Bell. Click here for his excellent website. He focuses on the issue of low blood volume and orthostatic intolerance, which I believe is key. He has discovered that many PWME have reduced blood volume, some as low as half of what we are supposed to have. If you lost 40% of your blood in a car crash, you'd die. If you lose that slowly over time (in ME) you feel like the living dead.
Dr Bell has treated some patients with saline injections (water plus salt to increase blood volume) with a degree of success. There are risks of getting additional infections but for some people, the benefits of increased function outweigh the risks. I tried taking oral salts in the form of a product called Recuperation. A lot of PWME online claim it helps them (over time) but it irritated my stomach and I found no benefit. I've got sachets of it stuffed in a drawer unused.
I'd love to have access to more specialised assessment and possible treatments. I wish there was some kind of Europe-wide scheme where I could go to Kenny DeMeirleir's clinic in Belgium and get tested for all sorts of sub modalities that may be influencing the bigger picture. These tests do exist but only at a high cost. Can't the NHS fund us? If we go along to our GP's they can offer us virtually nothing.
All treatment is trial and error. It's another bright Saturday and I'm feeling trapped by my body again. I want to go to the healthcare casino and put my chips on the table. There must be something else I could bet on?
-C
3 comments:
love the idea of going to the healthcare casino and putting my chips on the table. Brilliant!
Dr. Bell is one of our favorites, too. My son, Jamie, and I were lucky enough to go see him (he's located near my hometown where we visit a few times a year). I agree that Orthostatic Intolerance is a key aspect of our illness. Both of my boys now take Florinef (helps the body hold onto more salt and fluids), and the effect has been astounding. Jamie was couch-bound about 50% of the time last year and this year is back in school full-time, back in band, and even playing soccer. Florinef doesn't always work as well for adults (alas), but I'm getting ready to try it and some similar treatments again. Check out Dr. Rowe's overview of OI and treatment (he's the doc that first identified OI as a part of CFS; another incredible doctor who's helped us hugely):
http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm
Dr. Rowe will even work with your doctor by phone - he's doing that now for our younger son. Meanwhile, try plenty of Gatorade and V-8 juice (lots of sodium) - I can't tolerate the salt tablets either, but these drinks really help. Hang in there and take good care of yourself -
Sue
Ta for this Sue.
I tried Florinef too and it helped for a while but I eventually had to wean off. I'll check out the link.
-C
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