Thursday, March 6, 2014

5. There is no cure.

Что пнём об сову́, что сово́й об пень.

Have you any idea how much damage that bulldozer would suffer if I just let it roll straight over you?

Literal: Whether you hit an owl with a stump, or a stump with an owl.

It's shocking to hear that something you did not have 14 days before will now take your life away. When I was initially 'felled' by GBS, I was told it is an acute attack and usually subsides within 3-6 weeks after which the body will heal the damage to the nerves. My Neurologist said most people recover all or nearly all of what they lost, and it's a waiting game. Healing nerves can take up to 5 years for optimum return to normal.  But it's comforting to know that I hadn't lost my use of my legs permanently, and that eventually I'd have my normal life and health back. 

Guillain-Barre' Syndrome is the acute one-time attack, can be brought on by illness or a flu shot. 

With GBS, you have hope. You believe the Neurologist that in a few weeks of IVIg treatment, the immune system will revert to normal and stop attacking your own nervous system. Sure, you can't walk and you sleep all the time right now, but in months or years things will return to near normal.  That is awful, but it's hopeful.  Gets you through the first few months.

"What we're trying to do here is stop a freight train". That's what my Neurologist said. So full-on treatment with various pharmaceuticals began. Within days I went from being someone who never took vitamins or anything, to someone with many pills, divided into one of those segmented containers:

Plus IVIg (intravenous immune-globulin) 4 days at 28-day intervals.  IVIg was a godsend then. By a few days after the IVIg treatment course, I had improvement. It essentially distracts the body's T-cells (etc) from dissolving the myelin sheath from one's nerves, and they can heal. Slowly. 

The body can repair myelin sheath relatively effectively but only by microns per day. Hence the reason they say it might take 2-5 years to fully heal from a one-time acute GBS attack.  

For the first week or two following IVIg, yI could tell I was doing better. It's obvious. And then in that last week I would decline back to how bad I'd been before IVIg.  That decline in 4th week is telling the Dr. your immune system isn't stopping, is now into the chronic version. So now your GBS is officially CIDP.  While most Drs. will eventually see or know of a GBS patient, rare as it is, most will never have a patient with CIDP. Most don't even know what CIDP is. At least my Dr. knew both, and I was fortunate to have quick diagnosis. Most are not so fortunate and so don't get helpful treatments early. About 5% of GBS attacks are fatal. This is mostly because it comes on fierce and fast, but also because of misdiagnosis.  CIDP is even more rare, being only a small fraction of GBS sufferers. This is the first place we go to start learning:

When my neurologist explained my new permanent condition, CIDP, and I spent a lot of time researching it, I asked "So, what you're saying is, this is a chronic debilitating disease that will eventually put me in a wheelchair, then bedridden, and it's what I will most likely die of - way too young".  And he said simply, "Yes". Who knew one single word could pack such a punch. I was the owl hit with a stump, owl hitting a stump. CIDP was the stump and it mattered not to the stump if the owl hit it. 

I would be on IVIg for life, he explained. A constant arching effort to heal a little and then relapse a lot, month after month. Did that for about 18 months until I considered that it was the 4th week that wasn't working for me. Why not shorten the treatment cycle to 3 weeks, leave that 4th week out and I asked my Neurologist if we could try that. 

This part is important!  I learned that he's as much in the dark about CIDP as are most Dr.s and that I probably needed to be the expert if I wanted anything to change for the better. By 18 months, I was able to walk a bit more; the severe double vision had mostly subsided; the level of constant pain had diminished. The fatigue abated somewhat and I now slept 12-13 hours a day rather than 18 hours a day.  

NOTE: Over time you realize that most organizations like MS Society or GBS/CIDP Foundation International are primarily funded by the pharmaceutical companies and their goal is to 'sell' or provide supportive information about drugs and management meds. These organizations are not in business to find a cure, ever! And doctors are paid by pharmaceutical companies based on how many prescriptions they write.  Pharmaceutical companies also host elaborate jaunts to vacation destinations under the auspices of educating Drs about the meds the company makes. 

Institutional Corruption of Pharmaceuticals and the Drug Safety Myth

Harvard: Risky Drugs: Why the FDA Cannot Be Trusted

You'll find no end to such references. Remember the charts from my last posting - profits of Big Pharma?  The portion of those profits that finds its way into FDA and Legislators and Disease foundations and societies is enormous, and it's definitely a quid-pro-quo.  So why don't we have funding to find cures, you ask?  Because curing disease is not profitable to the pharmaceutical companies.  

Oh, don't get me started! If I had not been Dx'd with a serious life-threatening chronic illness, I would think someone who wrote the above was kind of over the edge, a bit kooky.  I don't blame you. You haven't had to learn all I have.  Once you're in the USA treatment protocols, you are a mini-franchise for the pharmaceutical companies. 

You are now, officially, a cash cow for the pharmaceutical companies. You will NEVER be cured.  You are worth far too much as a chronically ill person. 

Big Pharma Pockets $711 Billion in Profits by Price-Gouging Taxpayers and Seniors

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