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

Treatment Scorecard

In January of 2012 I was diagnosed with Lyme Disease by a brilliant Lyme Literate Medical Doctor (LLMD).  I had never fully recovered from an episode of viral hepatitis after kayaking in a local reservoir in October of 2011 and my LLMD went looking for answers.  The diagnosis of Lyme Disease was made.  A year later, additional testing revealed mold illness and we remediated our home from January to March of this year.  During the interim, I’ve been treating for Lyme Disease initially with antibiotics and subsequently with a Rife machine and boatloads of pharmaceutical grade supplements.  Recently Candida was added to the diagnostic profile and I further restricted my diet, started on a supplement specific for Candida.  Now for the heavy hitters from recent blogs:

Let’s see, about 2 months ago I was all excited about vasoactive intestinal peptide or VIP.  It’s used to treat Chronic Inflammatory Response Syndrome, a complication of mold illness which presents a significant neurotoxin challenge for recovery from Lyme Disease.  Basically this means that I react to most noxious sensory stimuli very negatively.

Update:  I’m still at one nasal spray per day and am unable to increase it without tremendous fatigue.  The seizure attacks (which began in March of 2012) are of a shorter duration when present and present one less time per day.

Shortly after starting VIP, my LLMD prescribed Losartan, a blood pressure medication.  Losartan lowers TGF beta-1, a hormone that can cause chest compression-type symptoms, another complication of mold illness.  The symptoms have been a daily issue since March, interfering with sleep and causing my breathing to stop at least once per day temporarily during seizure attacks.  Frightful indeed.  My LLMD tested me for asthma and lung disease; he prescribed Albuterol, an inhaled medication.  Geez!  I’ve used the inhaler once.

Update:  It’s now a month later and gratefully the chest compression, pain, and restricted breathing episodes are relieved at least 65%.    The addition of this second medication may be why I am not able to titrate up the VIP yet.  In Dr. Shoemaker’s protocol for mold illness (reference: the TGF beta-1 level should be treated first.

The most recent setback was a flare up of a persistent urinary tract infection and possible interstitial cystitis.  By the grace of God, this time a specific bacterium was found in the culture:  citrobacter feundii.  This bug is common in those who are immunosuppressed.  Yeah that’s me.  With a CD-57 of 17 (supposed to be above 160) denoting severe Lyme Disease, it makes sense.  I don’t like it though!  The treatment is typically from a class of antibiotics that I have not been able to tolerate.  In March this meant three straight days of intermittent seizure attacks.  No thanks.  I am not going there again!  Turns out that the LLMD prescribed one of those same types of drugs and the pharmacy did not catch it either.  In the back page of a computer file was a notation that got missed . . . By the grace of God I caught it and got my 40 cents back as I returned the bad boys.

Update:  My LLMD prescribes Doxycycline.  Now those of you familiar with Lyme Disease know that “Doxy” is the drug used for treatment when people first get bitten by a tick.  Sometimes it’s used at the beginning of a chronic Lyme antibiotic protocol or pulsed in rotation with other medicines.  I had never used Doxy.  Whoa.  I was scared!  What kind of herxheimer reaction would follow?  (Herxing is like a detox reaction when on a cleanse protocol.)  I’ve read that Doxy can trigger every kind of symptom under the sun.  I’ve also read that it’s going for $400 or more around the country.  At the time of this writing I am 5 1/2 hours after the first dose and I am feeling better.  The UTI symptoms are subsiding already.  The cost was cheap at my local pharmacy.  Whew!  One dose down and nineteen to go!

The last update is a minor one:  my response to noxious mosquito bites.  I seem to be a magnet for mosquitos, day and night, getting bitten through my clothing and in any spot not doused in DEET-laden bug spray!  Fifteen mosquito bites this past Saturday set off 36 hours of seizure attacks and sickness including Father’s Day.  Bad timing.  Oh well.  Nothing would soothe the inflamed bites either.

Update:  Monday my LLMD office recommended some Rife programs for Lyme and a specific co-infection called Bartonella.  Within a few minutes of running just 90 seconds of each program, the itching subsided.  Praise the Lord!  They returned later but were diminished overall and this occurred in less time than I had noted using various over-the-counter remedies/baking soda.  Yeah God.

I think I’m only going to go outside during the daytime when it’s cooler and I’m covered.  Besides, photosensitivity is a severe side effect of Doxycycline so I better stay out of the sun for the next 10 days!

Sure has been a crazy Spring and Summer so far.  Well actually the whole year has been insane!  I gotta tell ya that I am actually very encouraged this day so I hope that you will be as well.  Seems like the worst setbacks have always given way to the best insights and new directions.  I haven’t a clue why the Lord has allowed this crazy journey in my life.  My husband is a saint!  I do know that the breaks in the illness are very precious times between me and Steve.  I do know that I find myself grateful for smaller and smaller miracles that I might have missed if my life was “normal.”  I have already seen that my experience can benefit others as I have benefitted from theirs too.  I love to blog and make jewelry and had never done either before.  I have finally made some close friends here in Indiana.  And in the end, it is clearer than ever before that the promises of the Lord Jesus Christ bring more hope than any temporal experience in our days.   (Reference:  Psalm33)

Sure, Lyme Disease and all the rest are a drag.  So is the State of the US government!  We are all stewards of our experiences (good and bad), our time, our resources, our talents, our opportunities.  We can waste them, idolize them, or let them distract us from the eternal things that really give meaning to life.  “Whatcha gonna do with it?” is the bigger question really.  Well?