Friday, February 19, 2016

Treatments with Unobtainium

"Unobtainium is a highly desirable material that is hypothetical, scientifically impossible, extremely rare, costly, or fictional, or has some of these properties in combination."  --Google

On the occasions that I can read, I read a lot of science paper abstracts and journal articles.  I learn about all sorts of potential cures that sound fantastic on paper.  However, I see very little if any movement towards these cures actually being developed or if they are developed they aren't available in the US.  It makes one wonder if the BigPharma has a stranglehold on the market and doesn't want us to have cures that don't involve popping pills.  Hum.....

Conspiracy theories aside, here are three unobtainium treatments:

1) Phage treatment for gut infections
This involves the use of a virus that is bred to take out specific strains of bacteria, C. diff for instance, while leaving the regular gut bacteria untouched.  This is a huge benefit since the health of our microbiome is tantamount to our overall health.  Since there is a possibility I might have Whipple's, which is a weird rare bacterial infection of the gut, I would greatly benefit from phage treatment if I tested positive.  The current treatment for Whipple's is IV antibiotics for several weeks followed by 1-2 years of treatment with doxycycline.  I can't imagine the damage to the microbiome from this treatment regimen.  UGH.
Clearing Gut Infections by Jyoti Madhusoodanan   The Scientist Jan 1, 2016

2) Vagus Nerve Stimulation
I've been reading about this one for a while.  I've long suspected vagus nerve involvement with CFS/ME possibly even a viral infection migrated into the nerve itself causing inflammation.  Anyway, there have been great results in fibro patients with vagus nerve stimulation with many patients going into complete remission.  Although there are subcutaneous stimulators that are implanted like a pacemaker via surgery and also noninvasive stimulators that clip to the ear lobes, neither one is available in the US.  The subcutaneous ones are in the US but only for seizure disorders and of course the easy peasy noninvasive clip ons are only available in Europe. Geesh!  Proven tech that isn't allowed in the US.  If I could travel I would take a medical trip to the UK to get my hands on one of these puppies.  WTF!?!!?  So much for the US being the center for medical excellence.  
Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) by Cort Johnson Health Rising Jan 11, 2016 
3) Hyperbaric Oxygen Treatment
Again proven not only to relieve pain in fibro patients but also to reverse brain damage caused by the illness.  Most doctors will NOT prescribe this treatment.  You would think that with the CDC taking away our opioid meds they would allow this safe effective pain treatment to become standard but no.  
Hyperbaric Hope for Fibromyalgia Sufferers by Mike Williams Rice University Jun 2, 2015 
 Hyperbaric Oxygen Therapy Can Diminish Fibromyalgia Syndrome - Prospective Clinical Trial by Shai Efrati et al  PLOS One May 26, 2015 

Tuesday, February 16, 2016


Why oh why do I HATE showering so much?  I used to like showers but not since I got sick.

Is it because:

  • it wipes me out just to prep for a shower; gathering towels, setting up the shower chair, fetching shampoo or soap, disrobing, combing out my hair, etc
  • i hate showering in a shower chair; spots get missed
  • it uses up tons of spoons to get clean; all that scrubbing and hair washing
  • i now have to shampoo my hair several times to get all the oil out of it
  • i have to use all sort of concoctions to get rid of the armpit stink
  • i almost alway run out of hot water before I'm finished
  • i can't reach everywhere that needs soap
  • the cat is slowly ripping apart my scrubbie and I keep forgetting to buy a new one
  • i can never dry myself off very well because I'm sitting on the edge of the tub while toweling off
  • combing my hair out makes my arms ache
  • my hair takes forever to dry
  • i only smell/look good for about 24 hours but can only shower once or twice  a week i.e. it is an enormous exercise in futility
  • i don't want to undress in the cold
That about covers it.  And yes I really should be in the shower right now instead of writing about how much I don't want to shower.