So where are we now?

Driving+steering+wheelWhen I wake up from a nap while travelling in the back seat of my beloved’s Dodge Magnum, I often ask, “so where are we now?”  We may have been on the road travelling for hours when I finally settle down enough to fall asleep then wake up in a daze and ask this question.  Perhaps I could sound like a kid who would go the next step and ask, “are we there yet?”  Well since I’ve already used that question for the title of another blog post, I opted to go with the first question!

So if you are a gracious reader who has been following my story of recovery from Lyme Disease, Chronic Inflammatory Response Syndrome (CIRS), and Fibromyalgia, you have read in three prior posts about some new treatment directions (reference April 29th, May 11th, and June 20th of this year).  You have also read perhaps with horror of my battle with my most noxious complication of illness:  seizure attacks and all of its variants.  After 16 months since the “neuromuscular events” began, I have some good news for you:  beginning two days ago, the pattern of seizure attacks has started to change!  Hallelujah!  Hallelujah!  Hallelujah!

What prompted the new direction?  It appears that I’m close to landing on:  1) just the right dose of Losartan (an off-label application which has lowered TGF beta-1 levels and chest-compression pain) and 2) VIP (vasoactive intestinal peptide for CIRS which causes me to react negatively to most intense sensory stimuli in any form).  Additionally, a fifth type of antibiotic taken in the past 7 months is reducing the symptoms of a urinary tract infection within a matter of hours after taking it; nothing else has come that close, a la natural or by prescription.  While I am also still feeling spacey, sick, low level headaches, aches and pains, ringing in my ears and a host of other symptoms, the bottom line is that I am starting to get better!  The violence and frequency of the seizure attacks/pre-tics/tic attacks is coming down.  Praise the Lord!

I wouldn’t write about these things if it didn’t feel real to me.  I have had false hope many times before only to have my hopes dashed with more sickness.  Still I have kept the faith and persisted with the strength the Lord has provided; to Him be the glory if any good has come from this blog.  It’s time now to acknowledge that it is too early in this new direction to say any more than I already have written here.  So now I will end this post.

For today, please join me in being encouraged that after 16 months of hellish suffering, some relief has come.  I wish I could hug you out there for standing by me.  Thank you.  Just Julie

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

VIP: Vasoactive Intestinal Peptide

Vasoactive Intestinal Peptide Molecular Structure
Vasoactive Intestinal Peptide

According to Hopkinton Pharmacy in Hopkinton Massachusetts, Vasoactive intestinal peptide (VIP) is a 28-amino acid neuropeptide that belongs to the glucagon-growth hormone-releasing factor secretion superfamily.  It plays a special role as it exerts potent anti-inflammatory and immunomodulatory effects.  VIP is rapidly transforming into something more than a mere hormone.

VIP is evolving scientifically from a hormone to a novel agent for modifying immune function and possibly a cytokine-like molecule.  VIP is generally used in persons with pulmonary hypertension.  It’s a paradigm shift to explore mutual interactions between neural and neuroendocrine links in health and disease.  Recognition of the central functions VIP plays in cellular process is focusing researchers’ attention on this “very important peptide” as an exciting new candidate for therapeutic intervention and drug development.  Most recently research has been conducted on the use of VIP in the treatment bio-toxin illness such as fibromyalgia and chronic fatigue due to mold and Lyme toxins.

For more information and the most recent clinical research on VIP in for 20 patients with Chronic Inflammatory Response Syndrome, go to:

VIP New Treatment Tracker: Day 1

VIP47900-24-3With the rather loud barking of our pup, the mail lady delivered the foam cooler today containing vasoactive intestinal peptide.  Wow.  It is here!

I quickly gathered myself together with a quick prayer, reading of the instructions, and sipping some water before ceremonially administering the first dose.  A quick spray in one nostril delivered 50 mcg of VIP in a stable saline solution.  It must be stored in the refrigerator so I found a special spot for it shortly thereafter.  Here we go again on another great adventure:  another promising new treatment approach to lessen the burden of recovery from Chronic Lyme Disease and Chronic Inflammatory Response Syndrome.  Like Mach I with your hair on fire, no?

Within an hour I had a slight runny nose that quickly resolved.  No problemmo and this could be expected from a nasal spray.  The stress of it all brought fatigue so a nap will follow shortly.  Then maybe I will shower for the day.  It is beautiful outside today after all.

(For more information on VIP, head to the References section of this blog.)

My Lord goes before me this day and always.  To Him be the glory for the results of this new treatment approach.  He will be the author of the story that will follow, not the pharmacy, doctor, nor myself.  He allowed me to stumble upon this information again and participate in my LLMD prescribing VIP for me.  Thank you Jesus for preserving my mind this past year so that I could respond when a new modality presented itself.  Thank you for continuing to lead me, walk with me and see that this whole ordeal not be wasted.  There are many blessings You have brought me despite the dark days  that began October 11, 2011.  Your light is forever before me no matter the outcome.  Lord help me keep my eyes fixed on You.  And if it is your will Lord, heal me.

In Jesus name,  amen.  Just Julie