Brief treatment update

Here’s a brief update in my continuing adventure of recovery from Lyme, fibro, mold, and whatever:

Saw a new chiropractor for 7 visits and while the treatment got rid of my headaches and increased my overall ability to move, I had seizure attacks every visit!  I finally got word this past week that Dr. N did talk to my LLMD as I had requested.  Still  Dr. N referred me to another chiropractor for more “comprehensive” care.  That did not work out so well.  (See posting from Tuesday!)  I’ll probably go back to Dr. N after a few more magnesium treatments and after I’m able to drive 30 minutes to his office several times per week.

Began treatments of IV magnesium on Friday the 13th; spent the evening with seizure attacks/convulsions followed by 7 hours of tic/seizure attacks into the morning.  Yipes!  Had a better day by the time Sunday came, albeit weak from the previous 2 days.  (Only had one episode that night, on the way home from our Sunday church home group.)  Getting the IVs started has become an arduous, painful process with a minimum of 2 wretched sticks before the RNs find a suitable vein.  What follows on the day of treatment or the day after appears to be a herx reaction or healing crisis of sorts.  This treatment is scheduled to continue for a month; supplemental magnesium is a promising treatment for me despite the difficulties.  I’m praying that the Lord sustains me and that my tender vessels endure it!   Tomorrow I’m going to let them give me the PRN narcotic pain med. with the treatment.  I just need a break from these awful neck headaches that come from the wrenching head-n-neck motion during attacks.  Gratefully, there is improvement with one fewer attack per day, barely a few tics last night and significantly less chest compression pain!  Yes!

Rife or Beam Ray treatments are on hold.  My tolerance for this sound and light wavelength technology was decreasing so it’s on hold for now.

Waiting in the wings is a new round of low dose antibiotics after some lab testing pending soon to rule out a new UTI.  Got lots of itchy, burning, ringing, stinging, stabbing, aching symptoms all over right now possibly flared up by the stress of the IV treatments.  “Rest” is my focus at the moment in my weakened state.  I do make dinner most nights, however!

A neurology appointment is now scheduled for October 1st at the Indiana University Medical Center in Indianapolis.  IU is the go-to place for persons in the Fort Wayne area needing a special consultation.  So to Indy we will go at 5 in the morning.  Hey, if my beloved can take off at 6 in the morning for a kayak race, 5 should be a piece of cake, right?  Gooooo Steeeeeeve!  As for me, well I might still be up from the night before!

Steve and I are grateful for some help with a meal once per week from the lovely ladies at our church.  It seems like the night they bring dinner something bad happens later on, like an emergency room visit 2 1/2 weeks ago.  Their generosity is a real blessing and it sure breaks up the isolation for me when they stop by!

Well that’s the main stuff or at least the news for the masses.  If you wouldn’t mind praying for us that would be great.  My heart is tender for Steve right now because we had to cancel our trip to see his grandson for Jackson Rees’s first birthday and to see some dear friends in South Carolina.  I really need Steve in the evenings when the attacks and physical episodes of collapse are usually quite nasty.  This would be too much for a female friend to handle if a gal was staying with me at night and Steve went out of town by himself.

Steve has travelled alone 3 times since this process of illness began for me nearly 2 years ago.  We have cancelled a trip before but rarely decline local invitations.  Steve just goes to them without me and that is cool with me.  Travelling to Arkansas this past summer was very hard on me despite a couple of nice visits during the 5-day trip.  So to cancel the South Carolina/North Carolina trip is just what we have to do this time, although it’s a bummer.  JR is going to get a big box in the mail real soon!  Anyways, if you wouldn’t mind praying a prayer of sustaining grace (for me) and strength (for Steve) that would be super.  The Lord has helped us and even blessed us.  We are trusting Him and hopeful for all He has in store for us.  (Proverbs 3:5-6)

Take care all,

Just JulieProverbs 3.5-6

The Lab Rat’s VIP Update

Today was the 6th dose of vasoactive intestinal peptide or VIP for short.  I’m taking it for lingering symptoms of mold illness, specifically neurotoxin complications.  Turns out that it may also help modulate my extremely elevated TGF beta-1 lab value that could be creating the chest compression symptoms I’ve been having since the end of March.   And to cover all of the possibilities, my LLMD ordered, and I completed, both a pulmonary function test this week to rule out asthma and a cardiac work-up three weeks ago to rule out a heart attack.   I guess you could say that my Doc is thorough!  He certainly is brilliant.  But you know at times, I just feel like a lab rat!

The immediate noxious after-effects of the VIP dose may be diminishing; today is day 10, dose #6.  Since we did not have time to talk about it in my medical appointment this past week, I’m on my own to titrate it properly.  So Doc Julie recommends continuing on a once per day, every other day dose at noon (to reduce the possibilities of nightmares that occurred with midnight dose #2).  It’s still early in the dosing so perhaps I’ll decide to increase it to a daily nasal spray when the subsequent nightly seizure attacks are reduced.  Did I mention that I feel like a lab rat in a lab coat?  A white coat, that is.  And no, they are not “coming to take me away to the funny farm, where life is free and wonderful all the time . . . ”  yet!

So with a little cynicism, I hereby report that I am continuing on this journey into a complicated course of treatment with prayer and caution.  Yeah, you thought I was going to write, “fear and trepidation” didn’t you?  Nope.  I’m too far gone on trusting the Lord with this to let my faith fail with some healthy skepticism that creeps in now and then.

Signing off for now,

J. Ratlabratcartoon1