Journal entry by Tamara Lahey —
Olive still remains seizure free and is fully weaned off Vigabatrin which was the most dangerous because it causes blindness from permanently binding to the vision neuron receptors!
This summer was about discovering what is the lowest dose of the current medications that Olive needs and a foundation of nutritional support for the next stage of her journey into recovery.
She is on only a handful of pharmaceutical medications now on the lowest dosages possible:
Clonazepam – We have been trying to wean this one for the last 4 months. It is the 2nd most dangerous of all her medications. It causes brain damage over long time use. Her body will become dependent the longer it is on it. So far, we have been unsuccessful. The longest she has ever been able to go without it is 3 days.
Lansoprazole – to help with vomiting
Carbidopa-Levodopa – Used in patients with Parkinson’s to provide dopamine.
Baclofen – This is a derivative of the neurotransmitter γ-aminobutyric acid (GABA) activating GABA receptors, it helps with spasticity from damaged GABA receptors due to Olive’s brain or spinal injury.
Gabapentin – This is also a derivative of the neurotransmitter GABA and helps with nerve pain.
Mucomyst 10% (Nebulized) – This is NAC (acetylcysteine) and used to help thin and loosen mucus in the airways. It is the good medication that also reduces inflammation.
Xopenex (Nebulized) – This is also knows as levalbuterol and is a short-acting bronchodilator that relaxes muscles in the airways and increases air flow to the lungs. Since Olive isn’t running around bouncing the mucus off her lungs. This thins them so she can cough them out.
Epidiolex – This is a CBD product for seizure control.
Keppra – This is a seizure medication and we are currently weaning to 500 mg BID. It was at 1000 mg BID just a few months ago. Once it is fully weaned we hope for more alertness.
Prozac (Fluoxetine) – This is a helpful medication. It is being used off label for rehabilitation. It works by targeting protein tyrosine phosphatase sigma (PTPσ), a neural receptor that impedes nerve regeneration, remyelination and plasticity. Inhibition of the PTPσ receptor has been shown to promote regeneration of damaged nerves.
She has slowly added many supplements to support her brain health:
GABA- helps to balance levels of glutamate and aids in the body's ability to support healthy serotonin levels.
DopaPlus – Natural dopamine from the a tropical legume called Mucuna pruriens (also known as velvet bean)
Alpha Lipoic Acid - decreasing inflammation such as CRP, IL-6 and TNF-α which are elevated from ischemic injury.
TCU 1:1 THC/CBD – This helps with her pain, controls seizures and improves her muscle tone.
Potassium BiCarbonate – This reduces the acid caused by the ketogenic diet.
L-Threonine/N-Acetyl-Glutamine/ZincCarnosine - L Threonine is an essential amino acid that helps to maintain the proper protein balance. Glutamine helps reduce oxidative damage to brain cells. Zinc carnosine is an antioxidant, antiglycating and ion-chelating agent, a wound-healing promoter, and a free-radical scavenger.
Arctostaphylos/Chimaphila – Acrostaphylos is a genus of plants comprising the manzanitas and bearberries that inhibit the growth of Staphylococcus saprophyticus and E. coli, two of the most common types of bacteria that cause UTI. Chimaphila is a genus of five species of small, evergreen, flowering plants native to temperate regions of the Northern Hemisphere that reduce swelling, have a drying (astringent) effect on the tissues, and kill germs that cause infections in the urinary tract. She has not had another UTI since starting on these.
Culturelle Probiotic – Digestive health is very important since it is our 2nd brain.
L-Theanine – Provides neuroprotection and prevents glutamate receptor agonist-mediated injury.
NAC Powder - a natural supplement with proven antioxidant and anti-inflammatory properties, can improve the clinical outcomes after ischemic stroke at least in part by improving oxidative balance and suppressing inflammation.
Peptide (Nebulized & Intranasal Spray) – Olive takes liquid protein chains of BPC-157, Hyaluronidase, and Thymosin Alpha. These proteins work together to promote blood vessel growth after stroke.
Fish Oil - omega-3 polyunsaturated fatty acids that promotes white matter integrity and beneficial microglial responses after cerebral ischemia
Similase - proprietary blend of microbial enzymes that are active across a broad pH range in the gastrointestinal tract providing support of carbohydrate, protein, fat, and fiber digestion.
Liposomes – Olive takes a mix of Hericium, Leonurus, Nepeta, Piiscidia, Vaccimium, Glycyrrhizinate, 5HTP, Phosphatidyl serine, S. Baicalensis, and Schisandra. These are Chinese herbs involved in anti-inflammation and healing.
Neurospectrum 360 – a specific multivitamin designed for brain recovery backed by 100’s of clinical studies.
Synapsin (Intranasal Spray) – This fights inflammation, empowers Boosts neurons, and gets the mitochondria to calm down the microglia. It also helps mitochondria to become fully active and generate energy in the brain.
CoQ10 – Protects neurons from free radical damage.
Vinpocetine - This helps with prevention and attenuation of ischemic/stroke caused epilepsy, depression, and cognitive deficit through direct cAMP/cGMP-dependent pathway or indirectly through anti-inflammatory and antioxidant effects.
Phosphatidylcholine – decreases ischemic reperfusion.
Taurine – A vital compotent to synaptic membrane structures. It is an inducer of inhibitory neurotransmission, an anti-oxidant, neuromodulator, regulator of calcium homeostasis and neuroprotector, potentially makes it an ideal therapeutic agent for ischemic stroke.
Uridine MonoPhosphate – Supplementation helps in ischemic injuries by improving vascularization and increased angiogenesis, protecting white and gray matter integrity, restoring functional connectivity, increasing neurogenesis, decreasing the neuroinflammatory response, and improving motor skills and muscle strength.
Semax (Intranasal Spray) - elevates the levels and expression of brain-derived neurotrophic factor (BDNF) and its signaling receptor TrkB in the hippocampus, and rapidly activates serotonergic and dopaminergic brain systems.
Curcumin - reduces the expression of pro-inflammatory cytokines, including TNF-α, IL-6 and IL-12p70, in the absence of any toxic effect on microglial cell survival.
Lion’s Mane - reduces the levels of several inflammatory cytokines (IL-1β, IL-6, TNFα)
Acetyl-Carnitine - This regulates the PTEN/Akt/mTOR signaling pathway, and enhances axonal plasticity while concurrently ameliorating oxidative stress and increasing oligodendrocyte myelination of axons, thereby improving WMLs and cognitive impairment over time.
Melatonin - mitigates neuroinflammation and accelerates brain tissue restoration by altering microglial activity and ameliorating mitochondrial dysfunction.
Vitamin B6 – Olive needs additional B6 because the medication carbidopa/levodopa compete with B vitamin receptor – making her deficient.
Magnesium L-Threonate - modulates expression of the glutamate transporter, EAAT4, helping glutamate to be removed from the brain.
Phosphatidylserine - fat-soluble amino acid and phospholipid compound that makes up 15 percent of the brain’s cell membrane fats and promotes the release of neurotransmitters like dopamine and acetylcholine.
This summer was about discovering what is the lowest dose of the current medications that Olive needs and a foundation of nutritional support for the next stage of her journey into recovery.
She is on only a handful of pharmaceutical medications now on the lowest dosages possible:
Clonazepam – We have been trying to wean this one for the last 4 months. It is the 2nd most dangerous of all her medications. It causes brain damage over long time use. Her body will become dependent the longer it is on it. So far, we have been unsuccessful. The longest she has ever been able to go without it is 3 days.
Lansoprazole – to help with vomiting
Carbidopa-Levodopa – Used in patients with Parkinson’s to provide dopamine.
Baclofen – This is a derivative of the neurotransmitter γ-aminobutyric acid (GABA) activating GABA receptors, it helps with spasticity from damaged GABA receptors due to Olive’s brain or spinal injury.
Gabapentin – This is also a derivative of the neurotransmitter GABA and helps with nerve pain.
Mucomyst 10% (Nebulized) – This is NAC (acetylcysteine) and used to help thin and loosen mucus in the airways. It is the good medication that also reduces inflammation.
Xopenex (Nebulized) – This is also knows as levalbuterol and is a short-acting bronchodilator that relaxes muscles in the airways and increases air flow to the lungs. Since Olive isn’t running around bouncing the mucus off her lungs. This thins them so she can cough them out.
Epidiolex – This is a CBD product for seizure control.
Keppra – This is a seizure medication and we are currently weaning to 500 mg BID. It was at 1000 mg BID just a few months ago. Once it is fully weaned we hope for more alertness.
Prozac (Fluoxetine) – This is a helpful medication. It is being used off label for rehabilitation. It works by targeting protein tyrosine phosphatase sigma (PTPσ), a neural receptor that impedes nerve regeneration, remyelination and plasticity. Inhibition of the PTPσ receptor has been shown to promote regeneration of damaged nerves.
She has slowly added many supplements to support her brain health:
GABA- helps to balance levels of glutamate and aids in the body's ability to support healthy serotonin levels.
DopaPlus – Natural dopamine from the a tropical legume called Mucuna pruriens (also known as velvet bean)
Alpha Lipoic Acid - decreasing inflammation such as CRP, IL-6 and TNF-α which are elevated from ischemic injury.
TCU 1:1 THC/CBD – This helps with her pain, controls seizures and improves her muscle tone.
Potassium BiCarbonate – This reduces the acid caused by the ketogenic diet.
L-Threonine/N-Acetyl-Glutamine/ZincCarnosine - L Threonine is an essential amino acid that helps to maintain the proper protein balance. Glutamine helps reduce oxidative damage to brain cells. Zinc carnosine is an antioxidant, antiglycating and ion-chelating agent, a wound-healing promoter, and a free-radical scavenger.
Arctostaphylos/Chimaphila – Acrostaphylos is a genus of plants comprising the manzanitas and bearberries that inhibit the growth of Staphylococcus saprophyticus and E. coli, two of the most common types of bacteria that cause UTI. Chimaphila is a genus of five species of small, evergreen, flowering plants native to temperate regions of the Northern Hemisphere that reduce swelling, have a drying (astringent) effect on the tissues, and kill germs that cause infections in the urinary tract. She has not had another UTI since starting on these.
Culturelle Probiotic – Digestive health is very important since it is our 2nd brain.
L-Theanine – Provides neuroprotection and prevents glutamate receptor agonist-mediated injury.
NAC Powder - a natural supplement with proven antioxidant and anti-inflammatory properties, can improve the clinical outcomes after ischemic stroke at least in part by improving oxidative balance and suppressing inflammation.
Peptide (Nebulized & Intranasal Spray) – Olive takes liquid protein chains of BPC-157, Hyaluronidase, and Thymosin Alpha. These proteins work together to promote blood vessel growth after stroke.
Fish Oil - omega-3 polyunsaturated fatty acids that promotes white matter integrity and beneficial microglial responses after cerebral ischemia
Similase - proprietary blend of microbial enzymes that are active across a broad pH range in the gastrointestinal tract providing support of carbohydrate, protein, fat, and fiber digestion.
Liposomes – Olive takes a mix of Hericium, Leonurus, Nepeta, Piiscidia, Vaccimium, Glycyrrhizinate, 5HTP, Phosphatidyl serine, S. Baicalensis, and Schisandra. These are Chinese herbs involved in anti-inflammation and healing.
Neurospectrum 360 – a specific multivitamin designed for brain recovery backed by 100’s of clinical studies.
Synapsin (Intranasal Spray) – This fights inflammation, empowers Boosts neurons, and gets the mitochondria to calm down the microglia. It also helps mitochondria to become fully active and generate energy in the brain.
CoQ10 – Protects neurons from free radical damage.
Vinpocetine - This helps with prevention and attenuation of ischemic/stroke caused epilepsy, depression, and cognitive deficit through direct cAMP/cGMP-dependent pathway or indirectly through anti-inflammatory and antioxidant effects.
Phosphatidylcholine – decreases ischemic reperfusion.
Taurine – A vital compotent to synaptic membrane structures. It is an inducer of inhibitory neurotransmission, an anti-oxidant, neuromodulator, regulator of calcium homeostasis and neuroprotector, potentially makes it an ideal therapeutic agent for ischemic stroke.
Uridine MonoPhosphate – Supplementation helps in ischemic injuries by improving vascularization and increased angiogenesis, protecting white and gray matter integrity, restoring functional connectivity, increasing neurogenesis, decreasing the neuroinflammatory response, and improving motor skills and muscle strength.
Semax (Intranasal Spray) - elevates the levels and expression of brain-derived neurotrophic factor (BDNF) and its signaling receptor TrkB in the hippocampus, and rapidly activates serotonergic and dopaminergic brain systems.
Curcumin - reduces the expression of pro-inflammatory cytokines, including TNF-α, IL-6 and IL-12p70, in the absence of any toxic effect on microglial cell survival.
Lion’s Mane - reduces the levels of several inflammatory cytokines (IL-1β, IL-6, TNFα)
Acetyl-Carnitine - This regulates the PTEN/Akt/mTOR signaling pathway, and enhances axonal plasticity while concurrently ameliorating oxidative stress and increasing oligodendrocyte myelination of axons, thereby improving WMLs and cognitive impairment over time.
Melatonin - mitigates neuroinflammation and accelerates brain tissue restoration by altering microglial activity and ameliorating mitochondrial dysfunction.
Vitamin B6 – Olive needs additional B6 because the medication carbidopa/levodopa compete with B vitamin receptor – making her deficient.
Magnesium L-Threonate - modulates expression of the glutamate transporter, EAAT4, helping glutamate to be removed from the brain.
Phosphatidylserine - fat-soluble amino acid and phospholipid compound that makes up 15 percent of the brain’s cell membrane fats and promotes the release of neurotransmitters like dopamine and acetylcholine.
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