Up close and Personal with Guillain Barre Syndrome (GBS): a patient’s story

An iconic image of Guillain Barre Syndrome is President Franklin Delano Roosevelt (FDR), whose courage and leadership in the face of debilitating illness was an inspiration at a time humanity needed it most.                                       (Source: Famous People with GBS)

My encounter with Guillain Barre Syndrome (NOT “my GBS”!!!): On a Wednesday in December, 1996 I felt a bit off then spent the rest of the week in meetings with a business associate who had the flu.

• By Sunday my long adductor muscles (which run from the peIvis to the knee) were so swollen I couldn’t bend my legs enough to tie my shoes.
• By Monday morning my body felt like it was on fire from the inside – as if receiving constant electric shock.
• Being a somewhat “dedicated” runner I thought exercise might help.
• When I tried my thighs felt like rubber and my shins like lead; my legs went out to the side uncontrollably.
• After about 10 steps I abandoned running, went to church and then on to my doctor’s office.

In a period of 10 days I would go from running 50 miles/week to not being able to stand for 50 seconds. 

• The pain was excruciating and constant; it hurt no matter what I did.
• I woke up each night with the sheets and mattress drenched from night sweats.

GBS is diagnosed by exception (doctors rule other conditions out) so it took 30 days and various specialist visits before I was seated in the office of the Chief Neurologist of a local hospital. 

• By this stage I was so weak I could not resist the slightest pressure with my arms as the doctor tested me; this had made getting around next to impossible as I had to lift my legs by hand to get in and out of the car.
• I still remember being unable to FALL OUT OF a baseball catcher's crouch before nerve-conduction testing by my attending neurologist.  It's just as well: if I had it was either my nose or occipital bone that would have hit the floor first. 

The most unprofessional thing you’ll ever see: The Chief Neurologist told me: they thought I had something rare and (précising it with the statement: I realize how unprofessional this must look) literally read the checklist for a strange-sounding disease from a medical book.  He told me what I had affects about 1 in 100,000 people and the only thing he could predict was that it is unpredictable.

• Over the next 30 days I would be hospitalized twice.
• The strangest sensation was my brain thinking I could still do things my body had always done automatically and discovering I couldn't.  I needed a wheelchair to go to the lobby (for Hortons).
• During the first hospitalization I was treated with Intravenous Immunoglobulin (IGG/IVIG) Therapy to stop further damage.
• I was released and returned home.
• I will never forget crawling on all fours over a 6 inch snowbank to get to my front door.

First do no harm: About a week later I was rushed to hospital.

• Until reading my medical records recently, I thought my second admission to hospital was due to GBS relapse and that I’d again received the IGG/IVIG Therapy.
• Turns out it was due to an adverse reaction to a drug I was given to treat an infected intravenous site.

Hard as it may be to imagine, the adverse drug reaction was worse than the GBS onset.

• I literally needed to lie on the floor in admissions/emergency with a sky-rocketing temperature as I faded in and out of consciousness.
• After being admitted, I passed out in the bathroom and hit my head on the sink as I collapsed to the floor.

If there was an upside to this experience it made me much more aware of “what I was putting into my body”.  

Post Mortem: Overall I feel nothing but gratitude for the team of doctors, nurses and technicians who intervened. 

• This is TRUE also for the pharmaceutical company (THERE I SAID IT!) which invented the IGG/IVIG therapy sadly unavailable to Mr. Roosevelt and other GBS patients who’d gone ahead of me.
• But I would learn firsthand over the next 11 years that western medicine had no answers for my full recovery.

The upside is this put me on a journey I was meant to take – one which made me realize just how tied my therapist’s hands were in TRULY helping me by the absence of her access to cellular-health technologies particularly high-powered Pulsed Electromagnetic Field (PEMF) Therapy. 

• I find it likewise astonishing to read about the ongoing “residual-effects” described in my medical records and know there were technologies readily available with potential to have significantly aided my recovery that were never considered by the team of Specialists who oversaw my care.
• To think the best “technology” offered me was a rubber band intended to constrict the blood vessels in my legs to improve circulation.
• Comparing this to high-powered PEMF which is like a “battery charger for cells” is laughable (or sad depending on how you look at it).

 What’s it going to take to change this for others?

 Kindest regards

James, 647-289-3791

Replenishing Technologies Inc (RTI) does not diagnose, treat, nor cure any illness or medical condition.  Our services promote wellness and improved athletic performance; results vary.  Readers and users alike are advised to use the information, technologies, and methods presented under the supervision of their family doctor and/or other health professionals they rely upon.  

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