Saturday, August 22, 2015

The Downward Spiral

I'm in a prolonged crash.  It has been a crappy year for me.  I had a bad sinus infection this past spring and I had to do several courses of antibiotics to get rid of it which messed up my stomach.  Then due to the insane weather here and my weird sleep schedule I haven't been able to sunbathe to catch up on my vit D.  To top it all off I've had several super heavy periods that needed prescription progesterone to stop.  Each of them sent my already low iron levels into the basement.  It has been hot and humid for weeks now which makes me so much worse.  Even in the AC I'm sitting directly in front of a fan.  The AC unit in my bedroom is so old it no longer dehumidifies the air so while it is cooler in there it is still soggy. Those are the physical hits I've been dealing with this year.

The emotional hits haven't helped either.  My CFS consulting doctor retired earlier than he told me he would.  I thought I was going to have one last visit with him this year but I called and they told me had already left the practice.  I shopped around and carefully chose a new treating CFS doctor and after herculean efforts on my part managed to get an intake appointment, extensive nutritional testing done and one follow up appointment.  At the second appointment he gave me tons of paperwork.  Reams of it, which I thought odd at the time.  A week later I got a letter that the practice is closing due to financial difficulties.  It has been a month since then and I still haven't received my medical records from them.  They won't answer the phone and won't call me back.

So I tried calling my second choice and they don't take insurance of any kind.  The intake process alone will be over $1000 out of pocket and I can't get a straight answer out of the office chick as to what their fee schedule is.  I think I'm going to try back at the Marino Center again but with a different doctor.

Then to add insult to injury I get a letter from Prudential that they are reviewing my disability case so I have to assemble two years worth of medical records, sort them all out, make copies and write extensive explanations of my illness and why I can't possibly go back to work.  GAH!!

I want to go on vacation.  I want a house on the beach so I can just walk out the back door and straight into the water.  I don't want to cook.  I want to sleep and be quiet for at least a week.  I don't want phones or internet or TV or paperwork or doctor appointments or endless minor arguments with hubs.  I want to be alone and quiet and well fed and sun drenched and water logged.  Even us sickos want a vacation.

Tuesday, August 11, 2015

Vagus Nerve

From personal experience, I believe that inflammation is key in generating a good deal of the symptoms of CFS/ME. I got considerably better when I had cortisone shots in my joints for an unrelated problem.  The symptoms quickly returned as the steroids wore off.  None of my docs would prescribe a regular course of steroids to help with CFS/ME since it would be an off label use.

It turns out that stimulating the vagus nerve reduces inflammation in the ENTIRE body without the nasty side effects of steroids.  Now I'm on a quest trying to find out how to stimulate my own vagus nerve.  While I would love to have the pacemaker type device implanted in my shoulder, it isn't available for use in CFS/ME yet.

Here is various information on the vagus nerve and vagus nerve stimulation.

BBC podcast (20mins long and explains the pacemaker style device)

The Gut Brain Axis (hint the vagus nerve is the info highway between the two)

Cort Johnson's article on The Search for Neuroinflammation in CFS/ME

Of course this would all go faster if someone would cough up a sizeable chunk of money for some research on actual CFS/ME patients.  If it could get approved I would be first in line to give it a try.