Tag: Chronic Inflammatory Response Syndrome

The Lab Rat’s VIP Update

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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

Best to Hang in There When “There” is Unknown Territory

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With a brain fog or spaciness that defies definition, I humbly submit this blog update!

Tuesday began 2 doses of a promising new treatment for Chronic Inflammatory Response Syndrome:  vasoactive intestinal peptide or VIP.  The first dose was at noon and the second was at midnight.  I felt a little on edge as I went to bed within the hour of the second dose, followed by a few tic zips (such as the norm for me these days!).  What I didn’t expect next was the fearful images that passed before my eyes as I entered sleep mode.  No problem, really.  That’s what prayer is for and I called upon the Lord to sanctify my mind.  Prayer answered.  I was able to fall asleep without any more problems.

My next surprise came with an abrupt wake up at 4 in the morning with a vivid nightmare!  When I say vivid, I mean that the bats in my mind were landing on me, in color and I could feel them!)  Frightful indeed!  Low grade tics quickly escalated into seizure attacks, air hunger, shortness of breath, and at least 20 minutes of rotating noxious symptoms.  Not sure which was worse:  the nightmare or the aftermath!

I have had nightmares and this type of experience before.  The last one was at least 2 weeks ago so the timing may or may not have been related to the new medication.  After all, the pharmacist said it was a “benign” drug and my LLMD said that 50 mcg is a low, loading dose.  Yeah right.  I am overly sensitive to everything right now so it is no surprise that a nasal spray of a new hormone, deposited directly into the capillaries in my sinuses and leading into my blood stream, could shake me up a bit.  Sigh.  No problem again.  This is familiar territory.

Wednesday I decided to take a break from the VIP when I awakened feeling pretty beaten up.  For my daily treatment I just ran some Rife programs, slept some more and had a pretty good day overall for me.  The post-attack headache subsided and I was able to take care of a personal appointment and run a few errands.  I forced myself to get out and work in the garden later and it was soothing therapy.  I praise the Lord for His gift of Spring renewal here in the Midwest.  I love living here.

I took the next dose of VIP on Thursday at noon.  My nose started running right away but this didn’t last very long, thankfully.  Then brain fog settled in followed by a ramping up of my nearly constant companion of a low grade headache.  Regardless, I got going on some insurance matters that have needed attention for over a month.  Guess I’m at the next tier of taking care of things since moving home March 27th;  I was glad to “getter done.”  The day was going fairly well so I got to go to church with my hubby for the National Day of Prayer Service at our calvary chapel.  How sweet it is to worship with my Stevers, to pray, and to fellowship with other believers.  It had also been about a month since the last time I was able to go to church.

The worship was awesome.  However, during the service the music was sooooo loud, and the bass was soooooo loud that both of us had to plug our ears even though we were sitting in the back of the sanctuary under the balcony!  Turns out that plugging my ears is not enough to avoid sensory overload.   I cannot tolerate the vibrational sound energy and bass wavelengths of loud music.  I do not understand why it has to be so loud anyways?  We are there to worship the Lord Jesus Christ, not hurt our ears!  Unfortunately, things did not go well after I returned to wait for Steve in the car. I had to get out of there before the spill-over into seizure attacks would begin.  The music was the trigger that turned this multi-sensory-sick child of the King into what would turn out to be a 12 1/2 hour episode of seizure attacks.  As rocker Alice Cooper once sang, “welcome to my nightmare” once again.

Gratefully I was able to get out of the car by myself when we got home and walk gingerly into the house.   Gratefully Steve was available to help lift me off the couch two hours later after eating and resting, so I could get ready for bed.  Gratefully I was able to attend to my own self care and even make us some food earlier during one of the breaks in the action.  Gratefully I have some new positioning strategies in bed to minimize the impact the uncontrollable shaking has on headaches and other painful areas.  Gratefully Steve prayed for me both before we fell asleep and in the morning before he left for work.  Gratefully I was able to make a snack when I woke up ravenously hungry at 4 in the morning!  Hmmmm.  There’s that “4” number again.

The attacks tapered down by the time I was to finally get out of bed at 9:30 a.m.  Just a quick jolt welcomed me to my day and I was able to take care of myself and our dog.  Once again I was pretty beat up by the events of the last evening.  Twelve and one-half hours had passed since the episode began and it was finally over.  The shell of the person that is Julie was leftover to slowly get going, make my special dietary items, and take care of the stuff of life before my afternoon physical therapy appointment.  Gratefully I was able to start then later finish and mail the jewelry order that was due today.  But in the middle of the day and during physical therapy, there was another rebound episode of neuromuscular events followed by copious tears.  I am so sad.  This is really hard.  I am really broken.  Gratefully my therapist is trained in some calming techniques of myofascial release that work really well with me.  Even at my low energy level with soreness all over my body, I am now able to function again.

So this is chronic illness and the ups and downs of recovery.  One day you are excited for a promising new treatment and the next you are herxing from a reaction to the promising new treatment.  The physical therapist says that the seizure attacks seem “softer” than the ones I have had in the past.  O.k., I guess that’s good.  Maybe it is just part of the process of assimilating a new drug that crosses the blood-brain barrier and into a zone where illness has a foothold at the moment.  Sure is a tough road, I’ll tell ya.  Recovery is not for wimps.

At this point is usually where I write about my faith in the Lord Jesus Christ, sustaining me and giving me hope in the face of severe testing and trials.  If you’ve read this blog before, you probably know what I am about to write here.  You might expect me to say what a difference it makes to have Jesus in my heart or I would be filled with despair.  I usually say a lot about His sustaining grace as I truly believe that my life and these experiences are for my ultimate good and His glory.  Yes, I am softer in many ways than before this illness began.  This suffering will end someday.  I know where I will be when it ends.  Do you?  Do you know where the trials of your journey through life will lead you when your life ends?  If you do, does  your life show it?  Oh I hope so!

If you have not turned to the Lord as your Saviour, lover of your soul, forgiver of your sins (and you all have them, sorry folks, no one is perfect), and hope for all of eternity, then  what the heck are you waiting for?  How many blogs do I have to write about suffering before someone out there that isn’t saved gets it:  the meaning of life is not all about YOU, it is not all about ME.  It is all about HIM.  It ain’t about a religion either.  It is about a relationship with the God of the Bible.  Until we are given an eternal perspective that He provides and transcending joy that He grants beyond measure when we but believe in Him, all we have is our fallen human condition.  Now that is sad indeed!  Our problems will never all be solved in this life.  We will hurt.  We will lose things and people and places that we love.  Our experiences will be a mixed bag at best.  We will fall short of the peace we seek when we realize that in the end, the stuff of this life adds up to dust, to nothing at all.  We can’t take anything with us when we die.  As the wisest, richest king that ever lived (King Solomon) once said, it is all meaningless!

Yes, it is best to hang in there when there is unknown territory.  I am taking Jesus Christ with me.  My eternity began when I accepted Him into my heart as Lord.  Oh gentle reader, will you too?

P.S.  Going for a walk with my pup, a friend and her pup.  God is so good.

VIP: Vasoactive Intestinal Peptide

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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:

http://www.survivingmold.com/docs/VIP_published_3_2013.pdf

VIP New Treatment Tracker: Day 1

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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

New Treatment Approaches on the Horizon

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I’ve been back in our home from a for just over a month now and generally feel better.  We remediated our home for water damage and what turned out to be a minimal amount of mold.  My noxious symptoms were better when I first came home and as of last night, they are much worse.  May I explain?

While our home is as clean as it can possibly be, there are always multiple factors, internal and external to address when battling chronic illness.  I was staring at the ceiling praying one afternoon this past week after a series of low grade seizure attacks for which I could not identify any particular trigger.  The bedroom window was slightly open for fresh air and I had not changed anything recently in my diet, supplements, or Rife treatment programs.  I talked to the Lord, praying, for a long time.  Not sure how to describe what followed:  a suspicion that the lingering yeast infection may have a role in the severity of my ongoing symptoms.

So I did what any dutiful patient would do, I called my husband at work!  Well that’s probably not the best use of his employers time; it was the sweetest voice in the darkness that I could find at the moment.  Steve looked up “yeast infection and seizures” and found a connection.  We hypothesized that the yeast has crossed the blood-brain barrier, contributing to this seizure-like complication that has remained elusive.  I knew that I had an undiagnosed recurrence of a urinary tract infection as well, again!  (Labs results are pending.)  Geez, what if there’s yeast in there too?  Other lab testing has already showed that candida is still in my digestive tract.  All this seems impossible with my limited diet:  no sugar to feed it and several rounds of treatment in the past!

I do not consume added sugar in any foods; no desserts, sweeteners, 1/4 serving of fruit every other day, and only limited servings of gluten free grain carbohydrates.  But there are sugars listed on the labels in some of my pharmaceutical-grade, doctor-recommended, and biomeridian-tested supplements.  Oh my!  At first, I felt betrayed.  How could my healthcare practitioners who recommended these supplements and all of the foods that I was consuming not see that there still might be a problem?  The feelings didn’t last long as I decided that I need to get to work FAST.  These seizure attacks have gone on long enough.  IT HAS BEEN A YEAR!

Turns out there are 8 grams of sugar in the daily dose of the powder probiotic I had just restarted.  Turns out there were hidden sugars in other supplements and even the 4 ounces per day of coconut yogurt I enjoyed that is labeled as “plain.” Tuesday was a wretched morning after a nice dinner the night before with friends.  Further investigation found that my dinner included a smaller-than-usual serving but slightly sweetener form of coconut yogurt, the 1/4 serving allowance of fruit, plus the probiotic later that evening.   I did not usually have all of these together on the same night until then.  Later in the week, my LLMD said that when the reaction is delayed until the next morning, it might be due to the fermenting of the sugars and yeast.  When I woke up and got moving on Tuesday, the seizure attacks could have been  triggered by the combination of activity, increased heart rate/blood flow, and the yeast having a party in my brain.  I was ripe for an attack, literally.

I may not have all the details correct on how this all works.  I don’t need to have it down exactly to know what to do!  Immediately I replaced the probiotic; checked the ingredient label for all of my supplements and made adjustments; abandoned the plain coconut yogurt; and cut out even complex grains to one serving or less per day.  Within a day I started running anti fungal and Candida programs on my Rife machine.  Guess what happened?  I felt worse.  The first part of today was a nightmare.  Is this what they call a herx reaction (i.e. symptoms caused by the toxins of dead organisms before they can be flushed from the body)?   Who knows.  I have to restrict my diet further anyways.  This is still war.  I am fighting for my brain and when I cannot breathe in the middle of an attack, it feels like I am fighting for my very life.

Steve wondered today if another factor to consider are changes in barometric pressure that occur when it’s stormy outside.  Further research shows that persons with epilepsy and migraines often can have setbacks with changes in barometric pressure.  Gratefully, I don’t have epilepsy.  Only problem with the weather connection is that there is nothing a person can do about the weather!  (We sang a song about this in Mott High School Chorale.  All we can do is “just complain!”)

So the illness profile that is Julie is a nightmare these days with some nice moments occasionally!  Everything appears to have the potential to trigger a pre-tic state or a full blown seizure attack; these generally come when falling asleep or waking up in the morning.  Yes, it is common with Lyme Disease to have numerous noxious symptoms that change at will and vary with each individual.  The LLMD has added the diagnosis of Chronic Inflammatory Response Syndrome to the mix which describes the sickness that can follow after exposure to water-damaged buildings.  Fibromyalgia came as a diagnosis in 1992 with chronic pain and issues with fatigue.  While I have had many very happy and active days over these past 20 years, the clinical picture has gotten quite complex of late.  Thankfully, there is a new approach on the horizon:  VIP.  Here’s the latest research:

http://www.survivingmold.com/docs/VIP_published_3_2013.pdf

I’m not the kind of person that sees a T.V. commercial about a new drug and goes to the doctor demanding that it be ordered for me.  This time, I have pursued VIP after seeing this new research and talking with another person online who has benefited tremendously.  VIP stands for vasoreactive intestinal peptide, a naturally occurring hormone in the body.  My LLMD recommended it to me a year ago and we were unable to find it in the United States at that time.  I now fit both the research protocol and the compound pharmacy protocol I found online that issues VIP in the United States.  I really want to try it and am hopeful for some relief of these complications of illness.

I’ll write more about it as the order is processed Lord willing this week and as I begin treatment.  The average time for a person to notice a benefit is two months.  Sigh.  Regardless, I am looking forward to trying this new treatment approach, now that there is reasonable clinical indication that it could help me.

Thanks for hanging in there with me.  I’m lying low this evening after “doing it sick” today and baking some treats for others who have helped us so much this year.  If you are nearby (and you know who you are!), feel free to call me for a tasty treat.  Or maybe I’ll see you on Thursday with my plate of cookies for the National Day of Prayer remembrance at our church.  I do hope I make it this year . . .