Friday, April 19, 2013

A Few More Pieces of the Puzzle

A couple of posts ago, I mentioned that the Lord was leading me to look deeper into the autoimmune nature and genetic origins of my illness. Well, I have been doing just that. My worsening symptoms are helping to spur me on in my quest for information. Thanks to the Lord's direction, what I'm learning and what my doctor is learning, I am beginning to understand why I have been feeling like death warmed over.

As I have mentioned before, I suffer from methyl cycle (MTHFR) genetic defects. While the abnormalities in these genes do not gift a person with an undesirable disease from birth, they do predispose one to ill health. Based on what I am learning in Dr. Connor's book, Help, My Body Is Killing Me, these defects are basically latent genes that can be "turned on" during the course of a person's life, causing a lot of trouble including autoimmune disease. After doing some research, I conclude that I have suffered from methyl cycle defects for most of my life, but I feel I can pinpoint the specific events that fully awoke these sleeping little monsters--allergy shots (and corresponding steroid treatment) and my pregnancies. Dr. Connors explains that once the genes are turned on, they cannot be turned off. However, they can be managed by diet, supplementation and lifestyle alterations. I have a loooooooong way to go before I get to the management state, so for now I am one super-dysfunctional, toxic, autoimmune mess.

On Wednesday of this week, I met with Dr. Yakaboski for a consultation concerning what she learned at the MTHFR genetic conference last weekend. We have not yet received my highly detailed saliva test results via (due within 3 weeks), but based upon the case studies at the conference, she has a few good guesses about which defects I have. We already know that I have the homozygous A1298c defect from the blood tests Dr. Cave ordered back in October. Dr. Yakaboski suspects further defects including CBS and COMT. After two days of intense research, I am certain I have the CBS defect. I could be the poster child for this mutation!

CBS (cystathionine beta-synthase) initiates the trans-sulfuration pathway of the methylation cycle. Its job is to convert homocysteine (an amino acid) into cystathionine (the middle man) and its metabolites down the way, which I assume are very important. Symptoms of a CBS defect include:

  • Elevated urine sulfate level (CHECK! At my last appointment with Dr. Yakaboski, my urine sulfate level was at the highest possible reading of 1600+)
  • Low/normal homocysteine level (CHECK! This was confirmed in the bloodwork ordered by Dr. Cave.)
  • High blood ammonia levels (This has not been confirmed by blood test, but I show physical symptoms of having high blood ammonia including a "fog-like" state of the brain and severe bloating of the lower abdomen.)
  • Intolerance to sulfur containing drugs, supplements and foods (DOUBLE CHECK! Does anyone remember my downward spiral at the beginning of 2012? It was highlighted by several near death experiences with sulfa/sulfur substances.)
  • Adrenal exhuastian (CHECK! The presence of sulfate stimulates the "fight or flight" response, releasing cortisol in the body. The cortisol stress response is a good thing when being chased by a bear. It is life-saving in those kind of situations, but let's face it--I'm not being chased by a bear. Dr. Cave, Dr. Kuehn and Dr. Yakaboski have all three found that my adrenals are exhausted.  Did you know that you can naturally heal adrenal exhaustion by modifying your diet and lifestyle? You can!)
  • Brain fog (CHECK! My brain is so foggy that real life often takes on the characteristics of a dream. It's weird and unhelpful when caring for children and managing a household.)
  • Abnormalities in sugar control (CHECK! I have had blood sugar problems all my life.)
  • Difficulty sleeping (CHECK! CHECK!)
The CBS defect causes methyl cycle "middle men" to be turned into ammonia, more ammonia than the body is prepared to handle. When an overabundance of ammonia is present, BH4 (an essential cofactor of amino acid hydroxlase enzymes) is depleted. For every one molecule of ammonia, it takes two molecules of BH4 to metabolize it. So individuals with the CBS defect are BH4 deficient. Now, BH4 is muy importante. It is responsible for making the neurotransmitters dopamine, serotonin and norepinephrine. A BH4 deficiency also prevents arginine (an amino acid) from converting into nitric oxide, which is essential for neurological, psychological and cardiovascular health. Instead, the arginine is converted into free radicals (superoxide and peroxynitrite) which cause immunodeficiency, toxicity, and cell death. Funny story--I just told Brandon a few days ago that I felt as though every cell in my body was slowly dying.

After learning all of this fascinating information, my first thought was, "Where can I find a BH4 supplement?" But it isn't that simple. Until the other methyl cycle pathways are working properly, one should not begin BH4 supplementation. If a long-closed pathway is suddenly opened, a bad detox reaction will result. Detox reactions can be severe, and should be avoided when possible. Healing methyl cycle pathways is a process and a slow one at that.

I can't change my DNA, but I can change what I feed it. Step 1 of the healing process will be to change my diet.....again. If you have known me for any length of time, you will hardly believe the next words you read--I am doing away with meat. For awhile, anyway. It turns out that by restricting my animal protein, I can reduce my ammonia burden, preserving BH4, which will in turn allow my amino acids to begin making neurotransmitters and nitric oxide properly again. Going (mostly) vegetarian will also help my body achieve a more alkaline state, which is important. My body's environment is currently very acidic, a state in which disease of all kinds thrives.

In addition to avoiding meat as much as possible, I will also begin eating a diet low in sulfur/free thiols. Until now, I have been eating mostly high sulfur foods. Until yesterday, I have eaten three or more eggs every morning for breakfast, meats and high sulfur veggies for lunch and dinner, chocolate almost every day and as much farm fresh goat milk as I pleased. All of those foods are on the "High in Free Thiols" list. My eating habits have a lot to do with my increasing fatigue, state of yuckiness, depression, and sensitivity to toxins, but I had no way of knowing that until Wednesday. Changing my diet so drastically requires baby steps. For now, I will eliminate garlic altogether and reduce the number of eggs and the amount of high sulfur vegetables I eat. These vegetables include garlic, onions, broccoli, leafy greens, cauliflower, etc. As far as fruits are concerned, I am allergic to the ones high in free thiols, so no worries there. I will continue drinking meat stock, and strive to stay within the confines of GAPS because gut healing is still a very important factor in my healing protocol.

While I am eliminating several foods from my diet, I will also be adding foods. During the last two weeks, I have felt the Lord prompting me to try ghee (clarified butter) again. He just keeps sending me signals and information about ghee. God often speaks to me through repetition, so He has my full attention. On Wednesday, Dr. Yakaboski told me that a big part of getting well will be healing the mucous layer of my gut. Until I heal the mucous layer, probiotics will do me little good. If the probiotics aren't doing their job, I can't kill off the candida albicans, which inhibit gut healing. Foods that heal the mucous layer include ghee (I'm making some now, and I'm sure I will tolerate it!), ground flax and hemp seed, colloidal silver, slippery elm, marshmallow root, okra (yuck!) and sunflower lecithin.The plan is to add these food into my diet one a time every 3-4 days to be sure I can tolerate them. I am now keeping a food journal so I can track exactly what I'm eating and any reactions I may have.

Supplementation is in my future, but drastic dietary changes are enough to tackle at the moment. I will likely wait for my results to arrive and my consultation with the MTHFR specialist before worrying too much about supplements. I have enough to learn, absorb and implement for now anyway. Wouldn't you agree?

I covet your prayers at this time, especially prayers for my "inner man" (Ephesians 3:16). Ask the Lord to help me be aware of my dependence upon Him at all times. Ask that I will open myself to Him fully that He might fill me with His sweet Spirit. Ask for my protection against the Evil One and a wariness toward the weakness of my own flesh. Ask that He might grant me JOY, the real kind, the kind that can only be found in Himself. Ask Him for His continued clear guidance for my doctors and me. And give Him thanks in all things.

"Oh, that men would give thanks to the Lord for His goodness,
and for His wonderful works to the children of men!"
Psalm 107:8


Roberts, James C., M.D. "Methyl Cycle NutriGenomics"

Connors, Kevin, D.C. Help, My Body is Killing Me. AuthorHouse, 2010

Tuesday, April 9, 2013

Thoughts on Jubilee

Maintaining a state of jubilee has been harder than I had imagined. It is difficult to live in mental, emotional and spiritual freedom when the walls of my world are continually closing in. It isn't easy to not think of myself as a sick and struggling mother when that is my reality on most days. It is almost impossible not to fixate on my symptoms when they are constantly changing, surprising me and even sometimes making me laugh at the strangeness of it all. On the other hand, it is an effortless thing to allow my mind to wander to the things I would like to be doing that I cannot do, to my disappointment that I am not the mother I desire to be and to my growing realization that getting better is going to be far more complicated than loosely following a diet for a couple of years.

When I first began the GAPS diet last September, I envisioned a slow and steady journey toward healing. I saw myself getting better and better until--voila! While I rejoice to report that my digestive symptoms have improved significantly during the last 7 months, the ground has unexpectedly crumbled beneath my feet in other ways. My environmental sensitivities continue to worsen. In addition to toxins, fragrances and latex, I have become violently allergic to peanuts. I came very close to going into anaphylactic shock on Sunday evening after attempting to make peanut butter for Micah. I simply breathed in peanut particles released from the garbage can and within a few minutes my body temperature dropped, my sinuses swelled shut and I was struggling for breath. Now, peanuts are banned from the house indefinitely, and life has become even smaller. Weirder, too--I have ordered a good-quality cotton mask to wear in public as a safety precaution. If you ever need a giggle, just imagine the thoughts of my fellow grocery shoppers. On the bright side, a mask may make occasional church attendance possible again.

If the only opposition to my efforts to live in liberty were physical, it is possible that I would be having more success. But we are whole people whose bodies, souls and spirits are all intricately intertwined. When one part of our make up is assaulted, the other areas suffer. If our entire composition is assaulted at once, it is only by the grace of God we stand.....or at least get back up again.

Jenny received disheartening news at her last two doctor's appointments. I know she is going to hate reading this, which is why I feel it necessary to remind her that I love her as my own soul. I can't separate the two anymore so it is impossible for me not to take her hard news personally. (So there! You can't be mad at me.) A couple of weeks ago, she was told that the chemo was no longer working. The liver tumors were larger. The cancer in her esophagus had returned, and it had spread to her lungs and stomach lining. Experimental medicine was considered, but last week she was released from the trial because they had run out of the smaller sized pills and Jenny could not swallow the larger ones. I will not for a moment pretend that the difficulty of the past few weeks has nothing to do with her circumstances. Jenny continues to amaze me by her capabilities in spite of constant pain and a grim prognosis. As she often reminds me, she still has today and God will provide her with breath until He is ready to call her home. I'm just afraid He's going to call her before I am ready to let her go. I know it won't be a goodbye--rather more like a "Bon voyage!" and an "I'll be along soon"--but I tremble when I anticipate the pain I fear is coming.

I have been under considerable duress physically and emotionally, so it follows that I would be affected spiritually. And I have been. I have felt distant from the God I so need, the God I so depend upon for everything from what to put on my daily to-do list to the strength to pull it off. I haven't liked it. With no way to fix myself, I asked Him to fix me for me. I searched His Word for answers. I  prayed. I quieted my soul so I could hear Him. When He was ready, He spoke--

"Let go. Trust me. Give thanks."

The message came to me in no less than five books I was reading at the same time over the course of three days. It came to me in emails, in conversations.

"Let go. Trust me. Give thanks."

I heard it in a podcasted interview online. I saw it on Facebook. It was spoken in a sermon.

"Let go. Trust me. Give thanks."

After several days of being pummeled by these instructions, I received this helpful hint--

"P.S. It's all tied together."
It was during a conversation with Jenny that I realized what had happened and was able to verbalize it. "You know?" I said. "I think my problem is that I am suddenly doubting God's goodness."

Now, I know God is good. I have known that since I was three. I have memorized Scripture passages teaching the theology. The cross proves it. Without thinking, several examples of God's goodness to me in particular come to mind. The truth of God's goodness is a part of my spirit's bone structure, but my soul had lost touch with my spirit's conviction in the midst of the day to day struggle of being me. Because I had lost touch with this truth, I was suddenly trying to place the circumstances in my life in an order that made sense to me. It wasn't working. I was becoming frustrated, feeling overwhelmed and getting

I had to let go. I needed to trust God. I was called to give thanks. The three instructions are pretty interconnected. To let go, I have to trust. When I give thanks, it's easy to let go. When I'm trusting, I can clearly see God's goodness, and gratitude is a natural by-product of the process. But I couldn't start with letting go or trusting because I can't will myself to do either. However, I could will myself to give thanks. I didn't have to look far to find things for which to be thankful.

1) Jubilee Farm coming to life

 Thanks for the photo, Ann Marie!

2) Baking with babies

3) Sara's first egg hunt

4) Meeting Mr. Clarence, the precious man who provided me with goat's milk last summer when I could eat little else.  Mr. Clarence belonged to my Uncle David's congregation at Good Hope Baptist Church. He gave to me because he loves my uncle and our Lord.


5) The first planting and planting party at Jubilee Farm
 Our beautiful plants purchased from Yak's Farm on Hwy. 33

 Enjoying a tomato just a few minutes before getting stung by a wasp. Poor baby!

 Meet Rich who might as well already be a part of the family as Micah now asks for Auntie and Richie. :)

Only two and a half weeks after beginning my Gratitude List for 2013 (inspired by Ann Voskamp's book One Thousand Gifts) I have 45 gifts recorded in my journal. That's forty-five items that remind me that God is indeed very good and worthy of my trust. Forty-five items telling me I can let go.

Living in a state of jubilee is not pretending that life isn't hard or putting on a good face. Jubilee is saying, "God I trust You have our good at the center of Your plan" even when we can't make sense of things. It is looking at the world as a giant gift and life as a grand adventure. It is believing that life is still good even when it is painful. It is being able to say "thank you" when you are lying on a mattress only conscious enough to know that if you close your eyes for a moment you may wake up in Heaven. It is being able to pray as you are about to toss your cookies into the toilet. It is a peace that goes so deep that it doesn't matter if you never get well because healing isn't your real prize anyway. It is knowing that even if you lose a part of your soul, you'll get it back one day. Jubilee is Jesus, and that is something I always have and am never without.