Friday my Doctor recommended some new supplements to further my care and seemed pleased at some progress revealed in retesting of my gut health. But neither product is available right now; instead I had to crash in bed that night and most of Saturday.
Yesterday I thought I would work on trimming a sterile plum tree in our backyard that is riddled with black knot disease. We are trying to save it for a few more years of it’s flowering glory in the Spring and rich wine-colored leaves in the Summer. It was not to be so today.
Tomorrow I hope that my trial of THC-free hemp oil will resume with receipt of a shipment in the mail. I didn’t realize when I started it recently, how much I would need nor the extra timing needed for shipments across our country. This could help resolve the seizure attacks as soon as this week . . . if I get the dosing right . . . and if the next shipment arrives shortly thereafter. But there was a fire in a warehouse between here and there, threatening my continuity of care. Maybe I will have enough? Maybe not? Lord knows that one day we will have figured this all out!
When today came I thought I might clean our bathrooms and floors then complete an infrared sauna treatment before heading outside. Instead I was sick. Only the sauna treatment happened.
Then later and just when it looked like the core of my treatment plan was coming together, another infection sent me and my beloved to the walk-in clinic of our local hospital. Geez oh man. Steve offered to take me out to dinner last night but I could not make it. I was hoping to take a walk with him and the pup in the sunny, 50-degree weather. Nope, not today.
I cried a lot before proceeding with what we did need to take care of me today. Life sure is funny. Perhaps some medical appointments this coming week will clarify what I should do next to get well in addition to responding to urgent changes that seem to come along every few days. And maybe someday, one day, we will make plans for something fun and they will really happen!
In the meantime, date nights will be at a clinic or pharmacy at Walgreens or driving to the nearest metropolis for a fancy NeuroQuant brain scan. At least in the case of the latter, we got to see a dear friend, Mary, for a quick lunch at Freshii’s in Chicago’s Loop. Now that’s making the most of a day, eh?
Straining to trust in my Lord this night. Choosing to trust in His Word and promise to carry me through it all no matter what may be one day for:
There is a time for everything, and a season for every activity under the heavens:
2 a time to be born and a time to die, a time to plant and a time to uproot, 3 a time to kill and a time to heal, a time to tear down and a time to build, 4 a time to weep and a time to laugh, a time to mourn and a time to dance, 5 a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, 6 a time to search and a time to give up, a time to keep and a time to throw away, 7 a time to tear and a time to mend, a time to be silent and a time to speak, 8 a time to love and a time to hate, a time for war and a time for peace.
9 What do workers gain from their toil?10 I have seen the burden God has laid on the human race.11 He has made everything beautiful in its time. Ecclesiastes 3
A couple of years ago, I ordered my first bottle of CBD oil from Bluebird Botanicals. My hope is that it would take away the seizure attacks that I experienced on a daily basis as part of a serious and complex illness. The preliminary research showed that CBD oil made from industrial hemp would be legal for me to purchase in Indiana, was effective for intractable seizure disorders affecting children, and would bear few if any side effects.
I tried it. I slowly increased my dose over the next 3 weeks to the level indicated in the testimonies and research that I had found online. Then things went terribly wrong. I started to have frightful nightmares. They increased in vividness and horror then were joined by waking night terrors. These are the kind that don’t stop when you wake up! I was scared to continue. I backed down my dose, took a break, re-started and nothing seemed to bring relief. The benefits of halting or preventing seizure attacks did not outweigh these horrible side effects. Eventually I abandoned CBD oil altogether.
While medical marijuana has Cannabidiol (CBD) as an ingredient, you don’t need to live in a State where medical marijuana is legal to obtain CBD oil by itself. Medical marijuana also contains THC which is a schedule 1 controlled substance in the United States. CBD oil from industrial hemp only contains .3% THC. This allows sale of pure CBD oil in all 50 States. For me the .3% was still too much. I would later understand that I don’t even have a genetic disposition in my opiate receptors to explain my hypersensitivity to THC. Heck, I smoked pot occasionally as a young adult without any ill effects. There would simply be no explanation for my intolerance of legal CBD oil from industrial hemp.
Flash forward 3 years. I became acquainted with a company who manufactured pharmaceutical grade liposomal products. When they introduced a CBD oil product made from industrial hemp, I decided to try it again. I still suffered from daily convulsive episodes although the number of hours lost per day to them had decreased after beginning IV antibiotics for chronic Lyme disease. Seizures, tics of organic origin, non-epileptic seizures (or whatever you want to call them) were a definite neurological complication of latent Lyme disease. The episodes were less per day but not gone. I ordered a bottle.
I did not get past a single dose of the new product before suffering another waking night terror incident. Dang! The only difference this time was that the superior liposomal nanoparticle size delivered the CBD more quickly to my brain than the Bluebird Botanicals product — and for me that was not good. I returned the bottle to the healthcare professional from whom I had ordered it. And then I waited. There would be no other compelling rescue remedies to reduce my suffering when the nightly episodes came. No doctor would order medication for me to even try; I have been to the Emergency Room 10 times over these past 4 1/2 years because of wretched convulsions! Even over-the-counter Benedryl would leave me unable to function very well the next day if it did stop them (and render me too sleepy to care about anything the next day). A few herbal antibacterial supplements offered temporary relief on occasion and the reason for that will be another blog post about Small Intestinal Bacterial Overgrowth (SIBO). Neurotransmitters and hormones that can give rise to seizures are manufactured in the gut dontcha know . . .
I learned that one of the better manufacturers of CBD oil was preparing to introduce a THC-free CBD oil so I contacted the owner. I leveraged everything and asked to try a beta version of their new product. Within 2 weeks the bottle arrived in the mail. It took around 15 drops to get a significant response: their THC-free CBD oil definitely helped reduce the intensity and duration of the nightly seizure attacks. Yeah God! This benefit happened even when herxing (or reacting) to a new antibiotic used in the treatment of SIBO. Some relief came at last! I am optimistic for the benefits that I might receive when the first round of antibiotics for the treatment of SIBO are completed in 5 more days. Perhaps healing my gut will help everything as well. In the meantime I have contacted the owner again to see if I might obtain additional product; my hope is to transition from using it as a rescue remedy to having enough for regular dosing that can help prevent the episodes altogether. I may need to switch brands to get this accomplished. We’ll see.
CBD oil is legal for purchase in all 50 States of the USA. If you are frustrated with noxious symptoms especially tics, seizures, pain, depression, or anxiety, there may be hope in the use of CBD oil from industrial hemp. Please do significant research on the track record of the manufacturer, look for independent lab testing of purity/potentency/concentration of active ingredients and absence of unnecessary fillers before making your purchase, especially if online. Very likely you will not find a superior product at your local health food store as hemp seeds and hemp oil contain too low a concentration of CBD to make much difference for a serious health condition. Here is one brand that is available only from healthcare practitioners nation-wide: Colorado Hemp Oil. And this website has some good general information although note that it used to be funded by a manufacturer of industrial hemp products: Project CBD. I am not sure of its current status.
This is my story and I’m sticking to it! I am not an expert by any means just a gal trying to find some relief in an ethical, legal, and medically sound manner. Feel free to share pertinent information below. Please don’t try to sell me anything!
This past winter I gave it a try for about 3 months after discovering some research linking reduced seizures to consumption of a particular type of cannabis oil. When I found out that there is an industrial hemp oil with only trace amounts of THC and that it would be legal for me to purchase it in my State, I purchased a bottle online. I worked with the manufacturer and a couple of Facebook groups on dosing. My initial results were very encouraging!
Within 2 weeks I required increased drops of HCBDHO to receive the same benefit. This fit the profile of many other users of the product. Some required nearly 1/2 bottle to stop their seizures even if a child was taking it. There are lots of details here so I refer the Gentle Reader to previous posts by searching CBD oil on this site. In general as time wore on, the benefits diminished no matter what the dosing. Also in time I started having bad dreams then bizarre nightmares. The nightmares frightened me. I could not figure out why they were happening! Then I read that some folks are sensitive to even trace amounts of THC: the compound in cannabis oil that creates a high when taken in products that have a higher percentage of this cannabinoid. Well I wasn’t having a good time at all!
Eventually I stopped taking HCBDHO altogether. Now that I am sensitized to it, I do not intend to take it again. The risk of altered thought processes in my precious sleep (that I desperately need to recover from these wretched daily seizure attack episodes) overrides the small improvements that remained after 3 months. The benefits did not outweigh the risks. I am majorly bummed that it did not work for me. Nothing has worked for me. No combination of things have worked for me. I cannot tolerate treatment that works for others without ramping up to violent convulsions. Detoxing is impossible without noxious, severe side effects. Talk about being boxed into a dark corner without a flashlight. Will hope ever shine through again?
Sure it will. Lately I’m experimenting with magnesium threonate and may try a particular brand of Tahitian Noni Juice. The latter helped Kurt and Lee Ann Billings, the authors of Mold: The War Within, who did not do the typical protocols of cholestyramine, activated charcoal or benonite clay to get well. Yup, all of those three caused me noxious, severe side effects as well. Sish. I am very glad that there are new things to try despite the dead ends of my medical team at the moment. Thank you Lord that you are always my hope with or without Tahitian Noni: my forever guiding light Who uses the hardships for Your glory . . .
So for those of you considering using high CBD hemp oil (from industrial hemp) or other cannabis products (from hemp classified as medical marijuana), I encourage you to learn all you can at informational sites such as the following Scientific Review of the research literature: You are also invited to “Like” my facebook page which contains all of the pertinent research that I did when making my decision to try HCBDHO. The articles include the legality of industrial hemp products and the difference between them and medical marijuana. Here’s a link to get you started: Seizure Free Zone on Facebook
The prophet Haggai in the Old Testament had to remind the nation of Israel that the current day was as good as any to rebuild the temple of the Lord. They were preoccupied with the day-to-day events of their lives, much like we have with some variations. These days we have Twitter updates flashing or beeping us the latest trivial matters we used to not care about to the stress of keeping up with the accelerating pace of life. It takes more effort than ever to SLOOOOOW DOWN and smell the roses.
Ooops! Did I fertilize them with Rose tone when I cut them down on Saturday? Shoot. I better fertilize the William Battin climbers now because they are growing and wait to feed the Knock Out rose bushes since they are still dormant . . . And off I go again . . .
When Pastor Paul Mowery preached on the book of Haggai recently he asked the congregation a question about the things we once promised the Lord. What did I feel led to do as a young Christian or during a time of spiritual growth that I am not doing today? What happened? Was the inspiration transformed into another purpose or forgotten altogether? Hmmmm. Even when facing times of crisis this is a question that benefits from our reflection. If all things work together for the good of those who are called according to His purpose (Romans 8:28) then it is possible to further our ministry purpose even in fast-paced or challenging times. And for most of us, these are challenging, fast-paced times!
Some of you know that my brother (Michael) had a stoke 9 days ago. Today Mike will be transferred from an acute cardiac/telemetry floor in a hospital to the rehabilitation unit. We are encouraged by this news! This means that he is stable enough to tolerate up to 3 hours of physical, occupational, and speech therapy per day in addition to having his funding issues largely resolved. (He does not have health insurance and is applying for the Medicaid Extension Program.) Mike continues on a “pureed diet” and “thickened liquids” (aka Pepsi!) with one-to-one feeding for swallowing safety. He has not moved his left arm or leg yet since the onset of the stroke one week ago. While his speech slowly improves, I understand that his mental status varies in the finer points of reality orientation testing. This has delayed the filing of his Power of Attorney for Healthcare status needed in case of an adverse event. And lastly, there’s a decision pending of whether or not he will have surgery to place stents in his carotid arteries: with high blood pressure, the occlusions were the cause of the right CVA. All-in-all, Mike is embarking on the next leg of a long journey of recovery; we are grateful that that next step is beginning today.
One of the most significant events from my visit to see him last Tuesday was his statement through garbled speech, “I need Jesus.” When he said that I was speechless myself. I was still responding to the horror of seeing my brother so severely disabled as he lain in bed with his waxy bed rest complexion, sunken left side of his face, catheter-and-wires attached to his skinny frame, and lifeless look in his eyes. I had to dash into the hallway as my eyes flooded with tears! The night before we travelled out of State to see him had been a nightmare anticipating that moment as it triggered residual grieving from the loss of my last grandparent, parents, and youngest brother over the previous 11 years. So the the next day in the midst of my own emotions, my dear brother reminded me of what was most important. Yes, “I need Jesus too.”
What Jesus has for Mike will of course be different from what He has for me. Our health challenges are different yet both bring significant physical weaknesses. The seizure attack episodes have increased to over 4 hours per day now with the worst ones occurring after waking up in the morning and after dark in the evening. I can do nothing but lie in bed and ride them out. I no longer can tolerate the high CBD hemp oil that gave me relief last month. It doesn’t work anymore anyways. Another medical doctor has set me adrift after only 2 months of working with him! Gratefully there is a Dr. in his practice (a biotoxin expert) with whom I am scheduled to follow-up with next week. Gratefully I have already completed the preliminary lab work she requires. In the meantime I have about 6 hours each day where I can function at a reduced level. And now in the face of my brother’s devastating stroke, I see how very fortunate I am. I am optimistic for a full recovery from the biotoxin illness that I once thought was Lyme disease. Sometimes it takes 2 1/2 years to find the answers for which we seek, and for which the Lord may bring. It takes what it takes as I wait on the Lord. And in the meantime I have built a firm foundation in trusting Him through what ever may come. I didn’t say it was a perfect one! It is solid in Jesus Christ and His Word.
Mike is yet at the beginning of building his foundation. Indeed he will need Jesus to do the tasks ahead of him both for his own recovery and to be a wise steward of the love relationships in his life: that with his fiancé (Lisa) and Lisa’s son (Alex). Gilbert the dog should be fine. 🙂 I am sad that his journey looks insurmountable in the beginning. The obstacles appear tremendous in the humble opinion of an occupational therapist on a medical leave. All of my training is rushing forth wondering about the potential for new complications and very real permanent disability. I am going to need help lying all of that before the Great Physician for His wondrous omnipotence and care. With Jesus, all things are possible and Mike’s illness will not be wasted. Mike has professed faith in the Lord, Jesus Christ. The Lord will meet him on his bed of sickness and redeem it for His glory. In that we can be sure. (Psalm 41:3)
The call to build can be a frightful one in our own strength. I submit to you that we cannot build anything of lasting value in our own strength. The outward man and the trappings of the stuff of his life will fade away in due time. Only things rendered unto the Lord and completed with His leading will last. Yes, Mike’s call to rebuild his body begins today with a transfer to the rehabilitation floor of the hospital. My own call to rebuild comes with revisiting the biotoxin protocol I discovered over 2 years ago. He and I are like every one of us who faces the question of what will consume our time, energy, and talents in the next 18 waking hours let alone the rest of our lives. So what will we do with our discretionary resources? How much discretionary resource does each one of us really have? And are we spending it for what will last or for what is, in the end, meaningless dust in the wind?
As for me, I know that I am called to write about my experiences within the context of the will of the Father in my life. Writing poetry was my outlet ten years ago when I could hardly write a complete sentence due to my emotional pain. Today I leave you with the words of the second wisest man (King Solomon) to ever live after Jesus Christ. I left these words in Mike’s room in scripted on a tiny plaque that encouraged me so long ago when faced with the task of rebuilding my life. May they encourage you too, Gentle Reader. Let us both begin to gather ourselves that which is needed to build something of lasting significance, beginning today.
Yesterday I posted the following blog. If you have already read this, scroll down to the bottom for the latest update as of Sunday, March 23, 2014.
I have been instructed in another forum to check the United State’s Drug Enforcement Administration (DEA) for the ruling on industrial hemp intended for human consumption. High CBD hemp oil is not medical marijuana (MM), however it does contain trace amounts of THC: a controlled, Schedule 1 substance. Evidently the ruling in 2003 has not been significantly altered by recent case law (although I do not have access to more recent decisions to check this myself). Below is the original ruling. In non-MM states (or when out of compliance with state laws where MM is legal), the use of substances for human consumption that contains natural or synthetic THC at any level is considered ILLEGAL! Below is an excerpt from the final rule. Each of us will have to decide how we will handle the use of high CBD hemp oil whether or not you reside in a medical marijuana-legal state here in the United States.
[DEA-206F] RIN 1117-AA55 Exemption From Control of Certain Industrial Products and Materials Derived From the Cannabis Plant AGENCY: Drug Enforcement Administration, Department of Justice. ACTION: Final rule. SUMMARY: The Drug Enforcement Administration (DEA) is adopting as final an interim rule exempting from control (i.e., exempting from all provisions of the Controlled Substances Act (CSA)) certain items derived from the cannabis plant and containing tetrahydrocannabinols (THC). Specifically, the interim rule exempted THC-containing industrial products, processed plant materials used to make such products, and animal feed mixtures, provided they are not used, or intended for use, for human consumption (and therefore cannot cause THC to enter the human body). DATES: This final rule becomes effective on April 21, 2003.
Since I live in a State where products containing any amount of THC has not yet been legalized, I have some very important decisions to make. I am in shock.
And my Lord, Jesus, is still on the throne. Headed to prayer . . .
Update Sunday, March 23, 2014
Just found the following ruling from a 9th Circuit (Federal) Court that would supersede the ruling of a federal agency such as the Drug Enforcement Agency:
The DEA’s Final Rules purport to regulate foodstuffs containing “natural and synthetic THC.” And so they can: in keeping with the definitions of drugs controlled under Schedule I of the CSA, the Final Rules can regulate foodstuffs containing natural THC if it is contained within marijuana, and can regulate synthetic THC of any kind. But they cannot regulate naturally-occurring THC not contained within or derived from marijuana-i.e., non-psychoactive hemp products-because non-psychoactive hemp is not included in Schedule I. The DEA has no authority to regulate drugs that are not scheduled, and it has not followed procedures required to schedule a substance. The DEA’s definition of “THC” contravenes the unambiguously expressed intent of Congress in the CSA and cannot be upheld. DEA-205F and DEA-206F are thus scheduling actions that would place non-psychoactive hemp in Schedule I for the first time. In promulgating the Final Rules, the DEA did not follow the procedures in §§ 811(a) and 812(b) of the CSA required for scheduling. The amendments to 21 C.F.R. § 1308.11(d)(27) that make THC applicable to all parts of the Cannabis plant are therefore void. We grant Appellants’ petition and permanently enjoin enforcement of the Final Rules with respect to non-psychoactive hemp or products containing it.
So as of this date, in the interest of Gentle Readers in all 50 states (where marijuana is legal and where it is not), the tide is moving back towards my original statements: high CBD hemp oil (containing trace amounts of naturally-occurring THC for synergistic benefits) is available in all 50 states. I have a few follow up calls to make to ensure that my statements here are accurate.
So exciting. Please forgive the confusion. Trusting the Lord in all that He will direct my paths for His glory alone. (Proverbs 3:5-6)