When I heard the words, "you have been floxed," spoken by Dr. Jess Armine during Friday afternoon's consult, I did not understand what they meant or even know if they were true. After some detective work, which required a long string of phone calls, I was left with the feeling that the breath had been knocked out of my lungs. Crushed. Bruised. Betrayed by the God I love. I took the kids outside to distract myself so I could gather some control. Only a few steps out my door, I fell to my knees in my sister's gravel driveway sobbing so forcefully I thought I might vomit. My kids saw, but took it in stride. The children of sick mothers are like lion cubs, unaware they are too small and dependent to be so brave.
The last couple of weeks have conditioned my babies into a c'est la vie mindset. On Sunday, May 5, I was exposed to a pesticide that sent me into toxic shock and put me in bed for a week. On Mother's Day, I finally emerged from my sickbed only to quickly return when my children arrived home from church smelling strongly of perfume. I was unable to hold my children at all that day. Eight baths and four days later, I could still smell the perfume at the nap of Sara's neck. For the first time ever, I was forced to wear my mask in my own home. Sara hates my mask.
Mealtime has also been strange and sketchy. Although I have been following gut-healing protocol religiously for over 7 months, my digestive health has been declining rapidly. Old allergies have reemerged. New ones have developed, seemingly for no reason. Since Wednesday, most of my diet has consisted of eggs, rice cereal and boiled squash and broccoli, and no two meals are exactly the same. I may be able to tolerate eggs at breakfast, but that doesn't make them safe for lunch. I now have to muscle test everything before I put it into or onto my body, or risk an anaphylactic reaction that will put me back in bed. Regardless of how gentle the meal, I experience digestive pain after eating. I also grow very lethargic, as if all the resources of my body are expended upon digesting my food. For the last several days, someone (sometimes me) has made a meal for Brandon and the kids. While they are eating, I proceed to muscle test several foods to see what my body will accept. I make my meal, and sit down to eat as the family finishes. Mealtimes have been our main family time until recently, which makes this small upset feel bigger than it is.
With the exception of Tuesday night of last week, I have not been well enough to bathe my children for over two weeks. Everyone misses me bathing the kids, especially me! I love bath time! When bathed by someone other than Brandon or me, they often cry and throw angry tantrums. The night I bathed them, they smiled, played and laughed heartily.
I asked Micah, "Did you miss Mommy giving you a bath?"
He nodded his sweet, red head.
"What did you miss?" I asked, fishing for a compliment. I was rewarded.
"I miss the way you wash my hair," he said quietly.
My little guy is particular, and he likes that I anticipate his wishes. I warm a towel for him in the dryer. I give him a large washcloth with which he covers his eyes while I pour water over his head, carefully avoiding his eyes and ears. He expects cuddles once he is out of the tub and wrapped in his warm towel, and likes to be dressed in the bathroom with the door closed. Sara likes routine, too, and feels her life is ruined when I am not around to meet her every desire. But they accept their lots and manage, as must everyone who lives under this small roof.
I have been struggling to understand my lot. I was doing everything I knew to do, and I knew a lot. I was eating perfectly. I was making my own hygiene and household products. I was getting sunshine, fresh air and light exercise. I was often upbeat and positive despite my circumstances. I was praying for healing, fully believing it would come. Yet I was getting sicker, which is a terrifying thing. After consults with Sterling Hill (an expert in epigenetics) and Dr. Jess Armine (a methylation specialist), I now understand. Understanding has been soul-rending.
As soon as my DNA results from 23andme arrived, Dr. Yakaboski contacted Sterling, who quickly began translating my results using her fabulous genetic charting system. On Tuesday, she explained the chart and gave me an overview of my results. While Dr. Yakaboski was on vacation, she arranged a consult with Dr. Jess even before the blood work he had requested had been sent off. He was kind enough to agree.
At the beginning of the consult, Dr. Jess was careful to explain that I am not the sum of my genetic abnormalities, which is a relief because I have a ton of them. My DNA may predispose me to certain conditions, but the presence of an abnormal gene does automatically indicate the abnormality is expressing. However, many of my less savory genes are expressing. To make matters worse, I possess combinations of genetic abnormalities that are particularly unhelpful when they are present together. My problems extend beyond what I will discuss in this post, but I will cover the issues we are addressing at the moment.
Dr. Jess is unsure of the order in which my problems began. I am genetically predisposed to have leaky gut syndrome, IgE elevation (allergic response), DAO enzyme deficiency (DAO breaks down histamine), IgA deficiency (contributes to inflammation and slow healing), etc. From what I understand, as my gut continues to leak food molecules and toxins into my blood, my body recognizes these "bad guys" as antigens. Antibodies form to attack the antigens, and memory cells are created. When the same antigen presents again my antibodies remember it, and my reaction worsens, raising histamine levels (which I am unable to break down) and causing anaphylaxsis. My leaky gut has exacerbated my inflammation problem to the point that I am now in an autoimmune state. My body is attacking itself, causing Hashimoto's hypothyroidism and adrenal exhaustion among other problems.
Furthermore, I do not methylate properly. The A1298c mutation Dr. Cave discovered was just the tip of the iceberg. My methylation processes are in sad, sad shape. Methylation is an essential biological process. If the body is not methylating well, the body is not operating well. My body is not metabolizing folate or detoxing properly, contributing to my steady descent. I also have a gene (VDR--Vitamin D Receptor) which will make it difficult to donate methyl groups to my cells, so I'm going to be tricky to treat.....as if my insane allergies and leaky gut make it easy in the first place.
Now for the part that is so very difficult for me to comprehend--My mitochondria (power houses of the cells) are genetically predisposed to dysfunction. They probably have not been working properly for quite some time. In November, I put something in my body that--as Dr. Jess explained--was "equivalent to dropping an A-bomb on my mitochondria." If you have have been following my blog for awhile, you may remember from this post that my doctor in Baton Rouge found the bacteria Pseudomonas aeruginosa imbedded in the lining of my gut. To effectively kill this bacteria, I was prescribed Cipro, an antibiotic from the fluoroquinolone drug family. Due to a genetic predisposition and very bad luck, I am now a victim of fluoroquinolone antibiotic toxicity, meaning my already fragile mitochondria have been devastated. Thus, my body is currently unable to heal. So no matter how perfectly I follow GAPS or a natural lifestyle, without intervention, I cannot get better.
The severe effects of this toxicity (burning pain, shooting pain, numbness, tingling, dizziness, dyspraxia, insomnia, agitation, anxiety, memory loss, extreme chemical sensitivity, impaired concentration, joint pain, tendon ruptures, nausea, constipation, diarrhea, abdominal pain, vomiting, fatigue, hallucinations, dementia, schizophrenia, muscle deterioration, and weight loss to name a few) are not the most crushing aspect of this diagnosis. Last summer, my family prayed so intensely for healing. We are sure God led us to Dr. Cave in answer to those prayers, which means one of two things--either we do not know our Shepherd's voice or.......this is His doing. I reject the first option. It's unbiblical. I know my Shepherd's voice, and I follow. Within seconds I landed here--God led me to this crucible.
The feeling of cosmic betrayal is very real. I cannot approach the question of "why" without heartbroken tears. With the psalmist, I cry, "My God, My God, why have You forsaken me?" (Psalm 22:1). Never before have I experienced a pain so severe.
Because He is my lifelong Lover and Friend, I went to Him, asking Him why He would let this happen to me. He gave answer thus:
"Be glad and rejoice in My mercy. I have considered your trouble. I have known your soul in adversities. I have not shut you up into the hand of the enemy. I have set your feet in a wide place." (Psalm 31:7-8)
"I have not hidden my face from you, My afflicted one. I have heard your cries." (Psalm 22:24)
"My thoughts are not your thoughts, nor are your ways My ways. For as the heavens are higher than the earth, so are My ways higher than your ways, and my thoughts than your thoughts." (Isaiah 55:8-9)
"Do not worry, my child. No weapon formed against you shall prosper." (Isaiah 54:17)
"I AM for you. Who can be against you? I did not spare My own Son. No good thing will I withhold from you. In all these things, you will be more than a conqueror through My Son's love. You will overcome by the blood of the Lamb." (Romans 8:31, 32, 37, and Revelation 12:11)
"Do not fear. You are Mine. I have brought you to this crucible, but I will not abandon you to it. As you walk through this fire, I will be with you. You will not be burned. I am with you." (Isaiah 43:1-2)
"You are hard pressed on every side, yet not crushed; persecuted, but not forsaken; struck down, but not destroyed. I was crushed, forsaken and destroyed for you." (2 Corinthians 4:8-9)
He will not give me a reason, you see, though I have searched and listened intently. I am only given a promise--I do not walk alone. I would love a little insight, a straight answer, but I know from experience His promise is enough. He always makes good on His Word.
Neither God nor Dr. Jess left me without hope of healing. I have been given three assignments:
1) Attempt to rebuild a digestive mucous layer by eating up to 2 tablespoons of mucilaginous fiber per day, rotating the fibers. These fibers include ground flax seeds, ground chia seeds, ground slippery elm, ground marshmallow root, and okra pepsin. The hope is that rotation will prevent me from forming an allergy to any of them.
2) Find a form of dibencozide (B-12) that can bypass the gut. I found some drops that I will try to take through my nasal cavity. If that doesn't work, there are other (less savory) ways.
3) Research NAD (nicotinamide adenine dinucleotide) therapy, and consider joining a clinical trial offered to floxy patients in which NAD is given intravaneously for 4-6 days. The trial will take place in Springfield, LA. As a trial patient, I would only be responsible for the cost of the drug.
Brandon and I have been researching NAD. I will likely participate in the trial. The NAD should be able to "reboot" my mitochondria with little to no side effects, assuming I will tolerate the IV tubing and treatment environment. I am not looking forward to the challenges the trial will present to my family and me, and the treatment will have to be affordable. However, I do believe that God will make a way if it is right for me.
Fluoroquinolone toxicity is a very serious condition. Some people never recover. Some people lose their minds. Some people die. But I do not believe that will be my story. I definitely need a miracle, and I believe I'm going to get one. I believe I can be healthier than I have ever been, but I'm not putting my hope in clinical trials or doctors (as wonderful and generous as they are) or even healing. I'm putting my hope in Christ. It may seem a crazy move to place my trust in the One who put me in this awful place. But I owe Him everything. There is nothing He could ask that He doesn't deserve. He experienced far worse than the hell I'm in when He was hanging on the cross to make good on my sin. He stayed there though it was within His power to call the whole thing off so that one day I would be safe and whole with Him eternally, when none of this, however long and hard it proves to be, will matter. He has been in my place and worse to save something more important than my body--my soul--so that even if I depart this life under the worst of circumstances, who I really am will not come to an end.
I am not my diagnosis. I am not the sum of my DNA. I am not this sickness. I am something more, something of infinite value, something Jesus Christ gave everything He had to salvage. That is what truly matters. That is what will last. Not this nightmare. And maybe, through these trials, my brave, little cubs may catch a glimpse of their own infinite value, and get a foretaste of the surpassing worth of Jesus Christ. It will all be worth it. And it will all work for good.
PRAYER ANSWERED BY CROSSES
The last couple of weeks have conditioned my babies into a c'est la vie mindset. On Sunday, May 5, I was exposed to a pesticide that sent me into toxic shock and put me in bed for a week. On Mother's Day, I finally emerged from my sickbed only to quickly return when my children arrived home from church smelling strongly of perfume. I was unable to hold my children at all that day. Eight baths and four days later, I could still smell the perfume at the nap of Sara's neck. For the first time ever, I was forced to wear my mask in my own home. Sara hates my mask.
Mealtime has also been strange and sketchy. Although I have been following gut-healing protocol religiously for over 7 months, my digestive health has been declining rapidly. Old allergies have reemerged. New ones have developed, seemingly for no reason. Since Wednesday, most of my diet has consisted of eggs, rice cereal and boiled squash and broccoli, and no two meals are exactly the same. I may be able to tolerate eggs at breakfast, but that doesn't make them safe for lunch. I now have to muscle test everything before I put it into or onto my body, or risk an anaphylactic reaction that will put me back in bed. Regardless of how gentle the meal, I experience digestive pain after eating. I also grow very lethargic, as if all the resources of my body are expended upon digesting my food. For the last several days, someone (sometimes me) has made a meal for Brandon and the kids. While they are eating, I proceed to muscle test several foods to see what my body will accept. I make my meal, and sit down to eat as the family finishes. Mealtimes have been our main family time until recently, which makes this small upset feel bigger than it is.
With the exception of Tuesday night of last week, I have not been well enough to bathe my children for over two weeks. Everyone misses me bathing the kids, especially me! I love bath time! When bathed by someone other than Brandon or me, they often cry and throw angry tantrums. The night I bathed them, they smiled, played and laughed heartily.
I asked Micah, "Did you miss Mommy giving you a bath?"
He nodded his sweet, red head.
"What did you miss?" I asked, fishing for a compliment. I was rewarded.
"I miss the way you wash my hair," he said quietly.
My little guy is particular, and he likes that I anticipate his wishes. I warm a towel for him in the dryer. I give him a large washcloth with which he covers his eyes while I pour water over his head, carefully avoiding his eyes and ears. He expects cuddles once he is out of the tub and wrapped in his warm towel, and likes to be dressed in the bathroom with the door closed. Sara likes routine, too, and feels her life is ruined when I am not around to meet her every desire. But they accept their lots and manage, as must everyone who lives under this small roof.
I have been struggling to understand my lot. I was doing everything I knew to do, and I knew a lot. I was eating perfectly. I was making my own hygiene and household products. I was getting sunshine, fresh air and light exercise. I was often upbeat and positive despite my circumstances. I was praying for healing, fully believing it would come. Yet I was getting sicker, which is a terrifying thing. After consults with Sterling Hill (an expert in epigenetics) and Dr. Jess Armine (a methylation specialist), I now understand. Understanding has been soul-rending.
As soon as my DNA results from 23andme arrived, Dr. Yakaboski contacted Sterling, who quickly began translating my results using her fabulous genetic charting system. On Tuesday, she explained the chart and gave me an overview of my results. While Dr. Yakaboski was on vacation, she arranged a consult with Dr. Jess even before the blood work he had requested had been sent off. He was kind enough to agree.
At the beginning of the consult, Dr. Jess was careful to explain that I am not the sum of my genetic abnormalities, which is a relief because I have a ton of them. My DNA may predispose me to certain conditions, but the presence of an abnormal gene does automatically indicate the abnormality is expressing. However, many of my less savory genes are expressing. To make matters worse, I possess combinations of genetic abnormalities that are particularly unhelpful when they are present together. My problems extend beyond what I will discuss in this post, but I will cover the issues we are addressing at the moment.
Dr. Jess is unsure of the order in which my problems began. I am genetically predisposed to have leaky gut syndrome, IgE elevation (allergic response), DAO enzyme deficiency (DAO breaks down histamine), IgA deficiency (contributes to inflammation and slow healing), etc. From what I understand, as my gut continues to leak food molecules and toxins into my blood, my body recognizes these "bad guys" as antigens. Antibodies form to attack the antigens, and memory cells are created. When the same antigen presents again my antibodies remember it, and my reaction worsens, raising histamine levels (which I am unable to break down) and causing anaphylaxsis. My leaky gut has exacerbated my inflammation problem to the point that I am now in an autoimmune state. My body is attacking itself, causing Hashimoto's hypothyroidism and adrenal exhaustion among other problems.
Furthermore, I do not methylate properly. The A1298c mutation Dr. Cave discovered was just the tip of the iceberg. My methylation processes are in sad, sad shape. Methylation is an essential biological process. If the body is not methylating well, the body is not operating well. My body is not metabolizing folate or detoxing properly, contributing to my steady descent. I also have a gene (VDR--Vitamin D Receptor) which will make it difficult to donate methyl groups to my cells, so I'm going to be tricky to treat.....as if my insane allergies and leaky gut make it easy in the first place.
Now for the part that is so very difficult for me to comprehend--My mitochondria (power houses of the cells) are genetically predisposed to dysfunction. They probably have not been working properly for quite some time. In November, I put something in my body that--as Dr. Jess explained--was "equivalent to dropping an A-bomb on my mitochondria." If you have have been following my blog for awhile, you may remember from this post that my doctor in Baton Rouge found the bacteria Pseudomonas aeruginosa imbedded in the lining of my gut. To effectively kill this bacteria, I was prescribed Cipro, an antibiotic from the fluoroquinolone drug family. Due to a genetic predisposition and very bad luck, I am now a victim of fluoroquinolone antibiotic toxicity, meaning my already fragile mitochondria have been devastated. Thus, my body is currently unable to heal. So no matter how perfectly I follow GAPS or a natural lifestyle, without intervention, I cannot get better.
The severe effects of this toxicity (burning pain, shooting pain, numbness, tingling, dizziness, dyspraxia, insomnia, agitation, anxiety, memory loss, extreme chemical sensitivity, impaired concentration, joint pain, tendon ruptures, nausea, constipation, diarrhea, abdominal pain, vomiting, fatigue, hallucinations, dementia, schizophrenia, muscle deterioration, and weight loss to name a few) are not the most crushing aspect of this diagnosis. Last summer, my family prayed so intensely for healing. We are sure God led us to Dr. Cave in answer to those prayers, which means one of two things--either we do not know our Shepherd's voice or.......this is His doing. I reject the first option. It's unbiblical. I know my Shepherd's voice, and I follow. Within seconds I landed here--God led me to this crucible.
The feeling of cosmic betrayal is very real. I cannot approach the question of "why" without heartbroken tears. With the psalmist, I cry, "My God, My God, why have You forsaken me?" (Psalm 22:1). Never before have I experienced a pain so severe.
Because He is my lifelong Lover and Friend, I went to Him, asking Him why He would let this happen to me. He gave answer thus:
"Be glad and rejoice in My mercy. I have considered your trouble. I have known your soul in adversities. I have not shut you up into the hand of the enemy. I have set your feet in a wide place." (Psalm 31:7-8)
"I have not hidden my face from you, My afflicted one. I have heard your cries." (Psalm 22:24)
"My thoughts are not your thoughts, nor are your ways My ways. For as the heavens are higher than the earth, so are My ways higher than your ways, and my thoughts than your thoughts." (Isaiah 55:8-9)
"Do not worry, my child. No weapon formed against you shall prosper." (Isaiah 54:17)
"I AM for you. Who can be against you? I did not spare My own Son. No good thing will I withhold from you. In all these things, you will be more than a conqueror through My Son's love. You will overcome by the blood of the Lamb." (Romans 8:31, 32, 37, and Revelation 12:11)
"Do not fear. You are Mine. I have brought you to this crucible, but I will not abandon you to it. As you walk through this fire, I will be with you. You will not be burned. I am with you." (Isaiah 43:1-2)
"You are hard pressed on every side, yet not crushed; persecuted, but not forsaken; struck down, but not destroyed. I was crushed, forsaken and destroyed for you." (2 Corinthians 4:8-9)
He will not give me a reason, you see, though I have searched and listened intently. I am only given a promise--I do not walk alone. I would love a little insight, a straight answer, but I know from experience His promise is enough. He always makes good on His Word.
Neither God nor Dr. Jess left me without hope of healing. I have been given three assignments:
1) Attempt to rebuild a digestive mucous layer by eating up to 2 tablespoons of mucilaginous fiber per day, rotating the fibers. These fibers include ground flax seeds, ground chia seeds, ground slippery elm, ground marshmallow root, and okra pepsin. The hope is that rotation will prevent me from forming an allergy to any of them.
2) Find a form of dibencozide (B-12) that can bypass the gut. I found some drops that I will try to take through my nasal cavity. If that doesn't work, there are other (less savory) ways.
3) Research NAD (nicotinamide adenine dinucleotide) therapy, and consider joining a clinical trial offered to floxy patients in which NAD is given intravaneously for 4-6 days. The trial will take place in Springfield, LA. As a trial patient, I would only be responsible for the cost of the drug.
Brandon and I have been researching NAD. I will likely participate in the trial. The NAD should be able to "reboot" my mitochondria with little to no side effects, assuming I will tolerate the IV tubing and treatment environment. I am not looking forward to the challenges the trial will present to my family and me, and the treatment will have to be affordable. However, I do believe that God will make a way if it is right for me.
Fluoroquinolone toxicity is a very serious condition. Some people never recover. Some people lose their minds. Some people die. But I do not believe that will be my story. I definitely need a miracle, and I believe I'm going to get one. I believe I can be healthier than I have ever been, but I'm not putting my hope in clinical trials or doctors (as wonderful and generous as they are) or even healing. I'm putting my hope in Christ. It may seem a crazy move to place my trust in the One who put me in this awful place. But I owe Him everything. There is nothing He could ask that He doesn't deserve. He experienced far worse than the hell I'm in when He was hanging on the cross to make good on my sin. He stayed there though it was within His power to call the whole thing off so that one day I would be safe and whole with Him eternally, when none of this, however long and hard it proves to be, will matter. He has been in my place and worse to save something more important than my body--my soul--so that even if I depart this life under the worst of circumstances, who I really am will not come to an end.
I am not my diagnosis. I am not the sum of my DNA. I am not this sickness. I am something more, something of infinite value, something Jesus Christ gave everything He had to salvage. That is what truly matters. That is what will last. Not this nightmare. And maybe, through these trials, my brave, little cubs may catch a glimpse of their own infinite value, and get a foretaste of the surpassing worth of Jesus Christ. It will all be worth it. And it will all work for good.
PRAYER ANSWERED BY CROSSES
I asked the Lord that I might grow
In faith, in love, and every grace;
Might more of His salvation know,
And seek more earnestly His face.
'Twas He who taught me thus to pray,
And He, I trust, has answered prayer;
But it has been in such a way
As almost drove me to despair.
I hoped that in some favoured hour,
At once He'd answer my request;
And by His love's constraining power,
Subdue my sins, and give me rest.
Instead of this, He made me feel
The hidden evils of my heart,
And let the angry powers of hell
Assault my soul in every part.
Yea, more with His own hand He seemed
Intent to aggravate my woe;
Crossed all the fair designs I schemed,
Blasted my gourds, and laid me low.
"Lord, why is this?" I trembling cried;
"Wilt Thou pursue Thy worm to death?"
"Tis in this way," the Lord replied,
"I answer prayer for grace and faith."
"These inward trials I employ
From self and pride to set thee free;
And break thy schemes of earthly joy,
That thou mayst seek thy all in Me."
--John Newton
(1725-1807)
Disclaimer: I do not hold Dr. Cave responsible for the damaging effects of fluoroquinolone antibiotic toxicity. She simply did what she knew to do. Fluoroquinolone drugs are prescribed widely throughout the world, and there is no way to predict when or to whom this toxicity may occur.