The Lie that Never Sleeps

Not much over the course of a chronic illness wreaks havoc on your ability to cope, like discouragement. For me this came on Christmas day of which I spent half of sleeping or passed out. Was it from too much spiked eggnog? I think not. Succumbing to unconsciousness is involuntary in the “post-ictal” period of a convulsive episode. Yes, still dealing with that Gentle Reader along with the familiar foe of discouragement. At least the latter dynamic doesn’t stick around very long anymore.

February will mark a full year since the discovery my lead toxicity per bone lead testing. Most sojourners of chronic illness venture at some point into testing for heavy metal toxicity. I did so in 2013 via blood, hair, and urine testing from a few different companies and ordered by a few different Doctors. Chelation and detoxification protocols subsequently yielded impressive reductions of both kinds of mercury without a significant correlation of improvement in clinical symptoms. I returned to the detox protocols periodically over the past 10 years; having clean binders to use when exposed to a new toxin in my environment has been a very helpful tool to have and process to know. I am grateful for the knowledge and experience.

Flash forward to earlier this year when the Lord showed me that I had been exposed to lead in my childhood and that this might be something to address specifically. I would come to understand that blood testing for lead shows acute or recent exposures, not ones from years ago. Only bone lead testing will show latent exposure and the body’s way to deal with it is by storing Pb in one’s bones. So where or how does one get this tested? My research yielded two places to contact in the United States, one at an integrative medicine clinic at John Hopkins Hospital in New York and another possibly by researchers at Purdue University in Indiana. The latter had tested children poisoned a few years ago in Flint, Michigan and West Chicago but would they test me? I contacted an Assistant Professor from the bio of his published research which led to an email, a phone call, and a long car ride to his laboratory in West Lafayette, Indiana. Dr. Aaron Specht had one of the few handheld XRF Fluorescence devices in the country and offered me pro bono testing. What a fascinating experience!

My bone lead was high. Bone lead can be elevated for many adults of Baby Boomer age and older from marked exposures in the environment of our childhoods: leaded gasoline and paint. Lead was removed from both by the 1970s but not before wreaking their havoc on the generations poisoned by them. An Aunt recently told me that we were likely also affected by pollution from steel and manufacturing plants in what is called the downriver area of Detroit, not many miles from where we all grew up. But the kicker for me was the home of my childhood. Every day from birth until I went away to college was spent breathing secondhand smoke. Cigarette smoke contains many toxins, not the least of which are lead, cadmium, arsenic, and mercury. (Further mercury toxicity for me came from a mouthful of amalgams and weekly consumption of tuna fish!) Then there were about three years when my Dad and his teenage employees used lead solder in our basement for his business rewinding slot car motors. I remember watching the smoldering lead up close, playing with the rolls of lead, chasing mixed metal shavings with magnets, and thinking nothing of it at the time. No one did.

My Dad was diagnosed with a psychotic disorder, likely Schizophrenia, Paranoid Type, during those years in the late 1960s. He would later contract Parkinson’s Disease. We don’t have a family history of either of those; both can be correlated with heavy metal toxicity in the research literature. My Dad’s longest employee, a teenager named Billy, also developed a psychotic disorder but it was shrugged off at the time as related to his drug abuse. Probably so. He later committed suicide. Flash forward a few decades and I am the only surviving member of my immediate family who all lived for years in that house, all deceased due to various medical conditions. I still wouldn’t make a correlation for me between heavy metal exposures and serious health issues, even with an objective finding of high bone lead, until the Lord showed me a timing clue: the Convulsion Disorder started around the time of menopause and a diagnosis of both osteopenia and osteoporosis. I was losing bone with the drop in estrogen associated with menopause; lead displaces calcium and is stored in the bones often for decades as the body’s own protective mechanism. Studies have shown elevated bone and blood lead for women with certain difficulties during all stages of menopause and this can include onset of seizures.

Shortly thereafter I began a course of chelation with various types and forms of EDTA. Turns out that after some concerning side effects that I would need to switch to calcium disodium EDTA which Dr. Charles Beck had compounded for me. After 6 months and consultations with several different Doctors, I was still struggling. “It can take a year” they told me, for the natural process of bone re-modeling and chelation to make any difference. Then I remembered a compound I had discovered in 2013 that had unique properties to bind heavy metals, most notably mercury then lead, but was no longer readily available. OSR#1 had been removed from the market by the FDA despite phenomenal success forming strong bonds with heavy metals and chelating it without side effects. I did more research. One blogger said she had a legitimate source for the original compound, not the imitation supplement sold in Europe, that was now made by a new company who sold it as a water purification product. Downside: it’s extraordinarily expensive! The new owner of the company producing what is now called by it’s chemical name, NBMI, was a retired Dentist and former president of the major professional organization that trains dental professionals in biologic dentistry (aka mercury-free dentistry). I’ve been using NBMI for 4 months now and have had remarkable breaththroughs in my worst symptom: daily convulsive episodes after eating a full meal. Holy cow, a real and welcome change at last!

So Lord willing in February, my beloved Stevers and I will head back to see Dr. Specht to re-test my bone lead level. Will there be change? Will there be an explanation for why I have had a series of severe side effects during the chelation process with EDTA then NBMI? (Examples: four types of mouth sores at once at the same time as two skin conditions, one of which was shingles. Yeah, December has been pretty rough.) Was there still mercury lingering in my tissues despite testing suggesting levels were low and now NBMI is binding and chelating all of it? Can the body hold lead in other tissues over the years besides bone? What is the association between convulsive episodes and eating a full meal for crying out loud? Could lead toxicity and possibly lingering heavy metal toxicity in general explain my rap sheet of literally 200+ diagnoses over the past 13 years of serious illness? In truth, I may never know the answers to any of these questions. The setbacks are incredibly discouraging, disheartening, devastating. The road to recovery or some semblence of it just seems to get longer with more potholes. The “ROUGH ROAD AHEAD” sign seems more like my experience than anything else. But as long as it’s not the “ROAD IS OUT AHEAD,” there is hope, right?

Forgive me Gentle Reader, for this long blog and update of sorts. If you’re still reading this, thank you and I want you to know that I haven’t given up yet and neither should you! Please don’t give up on either of us getting answers when it seems like one more thing is going wrong. Neither of us is at the end of our road yet, right? The road very likely can be repaired or go a new way instead that ain’t all bad. As long as we can do a little that is good each day then a little is what we shall do. We’ll do more when we can as unto the Lord. As long as there is a little hope for a better tomorrow then going forward with a positive expectation for same is what we shall do. The God we celebrate on Christmas day is the symbol, author, and Master of the good that is to come for those of us who believe that Jesus came to save you and me. We shall overcome the discouragements of this day, this life as promised in His Word. Get with Jesus and let the leading of the Holy Spirit see you through it all. He loves you so Gentle Reader. Always. JJ

suicide, discouragement, Christian, Jesus, God, Chronic illness, lead, toxicity, heavy metal, mercury, testing, bone lead, Lord, faith, hope, Romans 5

A new answer to another question I did not ask

Life never ceases to be an adventure if that is the perspective you choose.

Perhaps an underlying theme of the Hope Beyond blog when it began would have been, “the plot thickens.” Or “deadens.” Flash forward about 7 years since my first blog in August of 2012. At my current stage of recovery from serious illness and a turn for the better-but-not-done-yet, I’m going to attempt the theme of “a new adventure awaits.” How is that for positive thinking?

A little trellis project almost 11 years in the making gets completed this weekend! Yay God!

I haven’t written in awhile. Since March of 2019, there are more moments of functioning better each week and I am taking advantage of them. There are also more very long naps of which I am forced to take advantage as well! The the new direction in my healthcare of getting off of thyroid medication created some problems then had an unexpected turn when parathyroid issues were discovered. My labs in both and related camps are all over the place, making for a Peter Faulk’s, Columbo-style of in-depth investigation raise more than one eyebrow of intrigue. Could there be another causative factor to consider in the convulsive episodes, requiring its own investigation? Yes, it appears so. Sure could be possible that the thyroid nodules, albeit shrinking, hid parathyroid tumors that are additional culprits in serious illness. Both hyper/hypothyroidism AND hyperparathyroidism can explain my clinical presentation. It appears that I am dealing with both. Who knew?

Well the Lord knew all along, the factors and their purpose for a nearly 8-year derailment in life as I once knew it. I am beginning to see that everything I have learned to date has NOT been wasted. I would not be able to respond as quickly to new information if there were still dozens and dozens of other medical conditions to rule out or address. I would not have a deep compassion for those suffering chronic illness today. My faith would be weaker and very likely my marriage. I could go on.

Very few folks have had as many medical tests that I have had, even in the community of persons dealing with chronic illness. Some folks stop after medical professionals label you with depression or anxiety. And if a person persists with extensive testing, very likely it’s peppered with questionable, even dangerous energy techniques akin to quackery. Thank the Lord that I didn’t spend very much time with energy medicine. He let me see the demonic influences and/or lack of science then helped me get away quickly thereafter (e.g. Rife treatment using sound and light frequencies hurt me badly.) Other times my Jesus simply closed the door to a promising yet deceitful avenue even before I was tempted to get near it (e.g. tai chi and yoga). This was very difficult at times when I felt desperate in my personal hell or conversely, when the testing and treatments were recommended by my brothers and sisters in Christ. I simply had to decline with blind faith even if that decision appeared to prolong my suffering in their eyes. Very tough road indeed.

Today I welcome the new answers with more of a sense of adventure than fear. Will I need neck surgery if a parathyroid adenoma is discovered? We are not sure yet. My labs don’t fit the typical profile and I have been in that camp dozens of times before. But when 1) both cardiovascular AND osteoporosis can be related to both thyroid and parathyroid anomalies and 2) calcium trafficking/dis-regulation problems can contribute to neurological symptoms, then it seems logical that both would need to be addressed. Incredible. Separate body processes in which anomalies can be the root cause of disease in the 2 different organ systems. And to think that this new adventure would have never happened if I had not gone to Mayo Clinic in February looking for answers about autoimmune disease. But there is no AD. Maybe not even a Functional Movement Disorder. Just another new answer to a question I did not ask. Holy cow! JJ

Psalm 34:8 New International Version (NIV)
Taste and see that the Lord is good;
    blessed is the one who takes refuge in him.

When He is All You Have

My beloved is the best . . . but he is asleep as I bemoan my sorry lot.

He holds me close . . . until I react to some scent on his manly body.

It should have a wonderful effect . . . but it does not anymore, sadly.

Such are the ravages of severe illness . . . the kind that makes everything hay-wired.

If I could explain it to you . . . then it would be from understanding myself,

And I cannot dear friend . . . so woe are my words, this night, once again.

But not forever, all night, or after a little while . . .

For He speaks into my heart song . . .

And makes all kinda nice.

My Jesus understands for he hung on a wooden cross . . .

With nails in his hands and feet, a spear thrust in his side.

I could never endure imagine that kind of pain, even if my head banged all night . . .

Let’s just say my Lord knows suffering so His tears comfort me alright.

Even if this Doc or that hath not have the medication right for me . . .

My beloved says healing will still come and my own fasting indicates so.

I shall do what I gotta do to manage this chaos . . . even if I never leave the table by the window at the café of the health food store

Because I can’t think straight and seizures are pushing up from within:  unsafe to make my way home until I stabilize.

“Cmon my Jesus, drive me home

It’s dark already and you are all that I have tonight.”

And so He did when He was all I had.

Goodnight again.

JJ