The cricket in the ER

It probably would created a shocking gasp on Gray’s Anatomy if T.V. Dr. Meredith Gray saw a black cricket on the floor next to a patient’s gurney.  But there was no fanfare for me.  I just smashed it with my shoe and hopped up onto the bed, not really sure if the nurse had changed the green sheets or not from the previous patient.  Yes, I said GREEN!

St. Joe is a very old hospital, probably as old as the biggest city near where we live.  At one time they had a pediatric and OB ward however it has been farmed out to the larger campus in the Lutheran network of hospitals.  If mothers arrive in the ER in labor then they are put in a transport vehicle of some sort sent to pick her up by the staff at the other campus.  Surely lotsa babies are born en-route or in the parking lot with this crazy system!  Who ever heard of a hospital not delivering babies?  We’ll see no-mo babies any more at St. Joe, just a few black crickets to match the worn linoleum flooring.  I did notice 2 months ago however, that they finally replaced the bedside tray tables — the ones with levers that were duct-taped together!  Now that was sanitary, eh?  Er, no!

The outpatient nurse, Mary, is as sweet as can be.  Since the hospital doesn’t have their own outpatient clinic, her charge nurse assigns both outpatient and ER patients to her caseload.  She runs around the whole time I am there for my monthly appointment.  Yes, I still have my infusa port flushed every month so I use the opportunity to take in some extra fluids if I need them and have any labs ordered to be drawn at the same time.  I just bring a lunch bag, binge on HGTV, and make a day of it!  Unfortunately my appointment in the ER was a bear this past Friday.  Six and one-half hours after arriving, I felt about as much like “toast” as that crushed bug still on the floor when I left.  It shouldn’t have taken that long.  But every month, I end up hanging out with Mary for at least 4 hours for a one-hour procedure.  It’s just the way it goes.

This time, it took the first 3 of those 6 hours to determine that one of the blood work panels would require 15 vials of blood if I were to have it drawn at the ol’ St. Joe!  Maybe I forgot or maybe I never knew that there’s another lab actually closer to our home that has a special kit for this particular panel; the kit enables multiple tests completed from a few vials of blood.  St. Joe could do the panel but I would probably be billed over $400 more and not be able to walk out of there due to the resulting weakness from the drawing of so much blood.  So it was not to be; we just some other routine labs, and finally AFTER EIGHTEEN HOURS OF FASTING, I ate everything I had with me!  I should have taken Mary up on her offer of a box lunch as well.  I was sooooooo hungry!  All of this probably contributed to the convulsive episode that followed the de-access of the infusa port and an extra 3-hour nap the next day.  What a life, I tell ya!

Someday I hope to have the infusa port removed.  My Doc may be reluctant to order this procedure since it was only 3 months ago that I needed six days of IV antibiotics for pneumonia.  That was another fiasco of a story left to another day.  If only I could go to the newer hospital closer to my home this process would be less exhausting.  Can’t do that either in case things should go wrong and I end up in the chamber room of the abusive nurse in the ER who might still work there.  Better check on that one sometime:  does he still work there?   Regardless, I seem to benefit from regular infusions of fluids when Mary flushes my port at the ol’ St. Joe.  Things shall remain status quo for now.

The monthly sojourn to St. Joe will henceforth continue until an insurance denial, a swarm of locusts, or maybe even something wonderful happens first.  Something wonderful?  We can always be hopeful right?  JJ

“So I will restore to you the years that the swarming [a]locust has eaten,
The crawling locust,
The consuming locust,
And the chewing locust,
My great army which I sent among you.
26 You shall eat in plenty and be satisfied,
And praise the name of the Lord your God,
Who has dealt wondrously with you;
And My people shall never be put to shame.
27 Then you shall know that I am in the midst of Israel:
am the Lord your God
And there is no other.”  Joel 2:25-27a

The next big thing

It’s a new year so perhaps it is appropriate that the Lord has shown me some new hope for overcoming the serious illness that I have been battling for the last 6 years.  Prepare for another brain dump!  Are you ready?

cranial nerves, TMJ, vasovagal, seizures, epilepsy, non-epileptic, convulsions, vagal, nerve

An Ears, Nose, and Throat Doctor (ENT) suggested to me that I might look into vagus nerve issues.  He said it might be related to why I had a seizure attack in his office after he put a long-handled mirror down my throat during his examination.  As soon as I stabilized 20 minutes later, I pulled out my smart phone and Googled what I would learn are called “vasovagal seizures.”  Holy cow!  There is a lot written about this topic!

The vagus nerve originates in the medulla oblongata of the brain stem and extends through the neck to the heart, stomach and other organs of the body.  It comprises the “parasympathetic nervous system” which is the opposite of the body’s “fight or flight” response of the sympathetic nervous system.  A vagal nerve stimulator (VNS) can be inserted into the body with an electrode wrapped around a branch of the left vagus nerve in the neck (not the right as that one travels directly to the heart).  The VNS sends tiny, intermittent electrical impulses to the vagus nerve to calm the heart, prevent fainting for persons dealing with syncopal episodes, depression, and even seizures.  A person with vasovagal seizures can place a magnet over the VNS when he or she senses an “aura” or sense of impending doom that an episode is imminent.  (I understand this phemomenon well.) The electrical stimulation, once correctly calibrated for the person, can help prevent this specific type of seizure.  No medication is needed although some patients with vagus nerve dysfunction and fainting spells take beta blockers (or herbal alternatives) to help manage the related cardiac symptoms.  (If accurate and not affected by the shaking, my blood pressure dropped significantly during a severe episode recently.)

Forgive me if I don’t have this exactly right as I am new to this topic!  What fascinates me is that persons with vasovagal seizures can present with some of the same symptoms and triggers that I have experienced:  ringing in the ears plus convulsive episodes after  noxious sensory stimuli and needlesticks.  Gratefully, I do not have fainting episodes; I have suddenly fallen asleep when the episodes occur in bed.   But wait, there’s more!  Because there are at least 2 branches of the upper vagus nerve that run near the jaw line, some dentists have suggested that the vagus nerve plus the trigeminal and other cranial nerves (as shown above) may be affected by dysfunction of the temporal mandibular joint (TMJ).  I have suffered TMJ pain for years after a double whiplash injury when in an auto accident in 1996.  I never was able to work full time thereafter due to my injuries.

The upper branch of the left and right vagus nerve runs along the face to end in a couple of points on each ear, respectively.  It seems plausible to me that I could use touch pressure, cold stimulation or even medical grade magnets to stimulate these points.  (Google vagus nerve stimulation for more ideas.)  It also seems plausible to me that any tight muscles or fascia of the face could press on these nerves contributing to distraction of the TMJ joint or impairing the function of the nerves affected.  “Occulsion” of the TMJ (which also includes disc displacement) can lead to a host of symptoms which I have experienced including headaches, pain, clicking sounds, swallowing and possibly sinus issues.

Wouldn’t you know but there are dental professionals who specialize in TMJ Disorders who have had success using special dental positioning appliances in reducing the tic-like symptoms of persons with movement disorders (e.g. Parkinson’s or Tourettes Syndrome).  They use ALF and Geld devices for the upper and lower jaws.  Holy cow again!  Who knew that a specially crafted mouth splint, designed to raise, displace, or widen the palette and jaw bones of the TMJ, could affect the brain so profoundly?

Well I kinda did.  I heard about this a few years ago related to TMJ and have been following one prominent dentist in this area of specialty for a couple of years.  My medical doctor/chiropractor referred me to a TMJ specialist out of town a few years ago.  For less money, my husband and I decided to have our local dentist fabricate a TMJ splint for me; later the dentist fabricated an anti-snoring mouth guard.  Both could have helped different aspects of this serious illness but they did not.  I was unable to tolerate wearing either appliance and would choke on them when the seizure attacks came at night.  I gave up.  So sad.  Years passed and nearly a thousand more violent convulsive episodes.

Did I tell you that another trigger was to simply eat food?  I thought it was a reaction to the food that I was eating, paid for allergy-type testing and retesting, changed my diet many times to try and end the episodes that often started at the kitchen table.  Many times my hubby had to carry me to the sectional or bed when I could not walk on my own or had  collapsed.  Whoa.  What if it was the very action of chewing that was triggering them?

The vagus nerve and the TMJ issues appear to me to be related.  The video above gives a profound example of how changing the positioning of the jaw can affect neurological symptoms of tics.  This is big news.  What I will do with this information is still unclear.  I favor starting with low-tech mouth appliances before the vagal nerve stimulator surgery, if indicated.  I have begun researching the literature, interviewing Dentists and Oral Surgeons in this field, joined a few discussion groups online, prayed, and talked things over with Steve.  For the VNS I would need to find yet another neurologist to see me.  Proceeding with formal assessments and treatment for the dental appliance will require regular travel to offices out-of-State and thousands of dollars in expenses.  Very likely, insurance will not cover most of the costs; not sure aboit the VNS.  But what if it is a functional, positional issue causing the daily episodes? A VNS would moss the root cause.  Something good seems possible.  I have hope again!

There is much to consider.  In the meantime, there are simple TMJ tests and exercises in addition to vagus nerve stimulation techniques that I found online that I have already started experimenting with at home.  The results are promising.  Yeah God for YouTube videos!  I am so grateful to have resources when I am searching for them in the middle of the night . . . with things to try when the seizure attacks are worse.

Yeah, I am up again late at night once again.  By the way, the parasite treatments appear to have helped some with the exception of getting blindsided by significant triggers (like having a blood draw about 2 weeks ago that triggered 4 hours of non-stop seizures, resulting in another trip to the emergency room and sigmificant increase in head and neck pain, tinnitus, ugh!).  One expert has suggested that improving the alignment of the facial/cranial/neck structures can help overall head and neck drainage; this could include everything from sinus mucous to lymph, blood flow, and cerebral spinal fluid.  Better drainage would surely help my detox protocols work better that and perhaps prevent or resolve the multiple infections I battle that may be affecting my brain, my central nervous system.

We have really got to figure this out folks.  Lord, is your hand in this next big thing for me or not-so-much?  I am hanging on . . . hanging on to you.  Will you graciously lead Steve and me as to whether or not we should proceed?  We need you now sweet Jesus.

I’ll let you know, Gentle Reader, the answer as it unfolds.  I know that my Lord will lead us!

JJ

 

Navigating the Mine Field of Recovery

Those of you in treatment for a serious illness know what this title is all about:  trying to figure out what will bring recovery or remission without making you feel worse!  Oh yeah.  Patients battling chronic illness talk about “herxheimer reactions.”  That is where either die-off or some kind of healing crisis brings on worsening of symptoms and even new, noxious symptoms.  Not fun.  So what is a person to do?  Unless otherwise advised by your trusted healthcare practitioner, here are some things that have been helpful for me:

  • Slow down your treatment protocol or take a break in treatment.
  • Try only one new thing at a time and at a lower dose if possible.
  • Take binders such as benonite clay, activated charcoal, chitosan, and binders of heavy metals (e.g. Intestinal Metals Detox).
  • Drink extra fluids especially pure water.
  • Add some hot lemon water first thing in the morning on an empty stomach.
  • Eat bitter foods which help support liver and kidney drainage channels (such as select herbs, radishes, dandelion root tea).
  • Do what you can to keep your bowels moving at lease once every day, minimally!
  • Step up your preferred method of detox such as salt water baths, infrared sauna, colon hydrotherapy, and exercise as tolerated.  Even massage, physical therapy, and chiropractic care can help release waste products trapped in your tissues.
  • Add nutritional supports for detox as you can such as glutathione (or precursor of lactose-free whey powder), vitamin C-rich foods, and minerals (such as magnesium, Dead Sea salt baths, Celtic sea salt, Quinton Quintessentials, and the like).
  • Make rest a priority!  Healing takes a lot of energy!
  • Pray.  The Lord cares, hears, and will lead you unto Himself if we but call upon His name:  Jesus Christ.  There is no greater comfort than this Gentle Reader.

So this is where I am at these days.  Last month I had to take a nasty antibiotic for the same infection and it hurt me badly so I ended it at the short end of the recommended treatment range.  Then I stepped up nutritional supports before adding a new treatment.  I tried to add a new biofilm-buster when treating a gut infection and reacted poorly, so I will take a break from it for now.  This month I was able to tolerate hot lemon water with manuka honey which is a combo I have not tolerated in years!  Changing brands of glutathione helped me to start taking this critical element in the 3 phases of detox, yeah God!  Also, using a combination of binders has helped slow down some overnight convulsive episodes.  I hypothesized that killing infections  released  toxins inside of the bacteria and fungi targeted, contributing to an increase in episodes.  So these days I am really glad for the leading of the Holy Spirit, and a myriad of webinars from really smart researchers who suggested binders.  “Yeah God” for the relief that has followed.

Psalm, 7, 37, rest in the Lord, wait, patiently, Him, Lord, peace, Christian, healing

I guess then it is time for a nap.  No matter that it is a beautiful day outside.  Naps are a beautiful thingy too ya know.  Lord willing, I am going to get well!

Take care, JJ

 

Treatment Update

Time for a treatment update and some good news!  Yes, things aren’t as bad.  🙂

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode most days at my most vulnerable times:  falling asleep or waking up.
  • Clearer thinking for some part of more days.
  • Less stress, fear, sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate more supplements prescribed by my doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.  (I often stay up late to avoid seizure attacks falling asleep.  Sometimes this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.  And please don’t give up!  If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.  You are not alone.  Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.  He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.  He sees us on our bed of sickness.  He hears us.  And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.  He promised!

Thank you for following my journey dear one.  Take care, JJ

 

 

Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ