2 PANS kids fighting lyme and coinfections, our journey to healing

Neurotransmitter therapy

This would have been good if it had worked. That seems silly to say but the principal really sounds like it should work. Once every 4 weeks we sent a urine sample for analysis to Neuroscience labs in Osceola WI through a local doctor. This doctor oversaw the neurotransmitter therapy and also monitored the reports/levels. In addition she was using other supplements to help his behavior somewhat similar to a D.A.N. Protocol.

Some of the tests were covered on our insurance, including the neuroscience tests, but some had either a copay or we needed to pay the full amount. This doctor does not take insurance, and the fee was $199  per visit. Charges for the tests ranged from $25 to $100 depending on which test we were doing. Not all tests went to NeuroScience only the tests for neurotransmitters. This doctor also ran labs for his B12 levels and other diagnostic evaluations.

The neurotransmitters levels tested were:

  • Epinephrine
  • Norepinephrine
  • Dopamine
  • Serotonin
  • 5-HIAA
  • Glycine
  • Taurine
  • GABA
  • Glutamate
  • PEA
  • Histamine
  • Creatinine

All his levels were always consistently high, some significantly so. Including his histamine levels, which still makes me wonder if his histamine levels are not relatable in some way to his adverse behavior, especially as we see an improvement in his behavior when he takes his Dallergy tablets. I personally am not a chemist but would be interested to hear other people’s thoughts on that particular question. Anyway his psychiatrist has made the valid point that these levels are just a snapshot in time, yes on the day we did the urine sample these things could have been high, but who knows if they stay that way permanently? I am sure neuroscience has some information for that but I couldn’t find it on their website.

Anyway we took the different neurotransmitter therapies suggested, CALM-PRT, Kavinace, and TheaNAQ. Unfortunately over the course of the 6 months we tried this therapy we didn’t see enough significant changes, not enough to keep us going anyway.

Personally we found the supplements  to be quite expensive and as we were not seeing the best results we stopped. The Kavinace did initially have good results with his sleep patterns and for about 3 months he actually slept straight through the night in his own bed. Unfortunately, he seemed to grow accustomed to the products and they no longer had an effect.

If you are interested in learning more this is a good place to start. Our physician was perplexed by the lack of response with our son and indicated that this was unusual with only 1 or 2 other patients reacting in a similar manner i.e. no notable response, so it could be another piece to the puzzle, just not for us.

What are Neurotransmitters? In this article at About.com regarding panic disorders its explains the following:
“It is believed that the brain contains several hundred different types of chemical messengers (neurotransmitters) that act as communication agents between different brain cells. These chemical messengers are molecular substances that can affect mood, appetite, anxiety, sleep, heart rate, temperature, aggression, fear and many other psychological and physical occurrences.

Scientists have identified three major categories of neurotransmitters in the human brain:

1. Biogenic amine neurotransmitters have been studied the longest and are probably the best understood in terms of their relationship to psychological disturbances. Six of the main biogenic amine neurotransmitters are:

  • Serotonin is chemical messenger that a role in modulating anxiety, mood, sleep, appetite and sexuality. Serotonin reuptake inhibitors (SSRIs) are generally considered first line medications to treat panic disorder.
  • Norepinephrine, which influences sleep and alertness, is believed to be correlated to the fight or flight stress response.
  • Epinephrine is usually thought of as a stress hormone managed by the adrenal system, but it also acts as a neurotransmitter in the brain.
  • Dopamine influences body movement and is also believed to be involved in motivation, reward, reinforcement and addictive behaviors. Many theories of psychosis suggest that dopamine plays a role in psychotic symptoms.
  • Histamine is thought to influence arousal, attention and learning. It is also released in response to an allergic reaction. Antihistamines, which are commonly used to treat allergies, have common side effects of sedation, weight gain and low blood pressure.
  • Acetylcholine is believed to be associated with muscle activation, learning, and memory. Alzheimer’s type dementia has been linked to acetylcholine function.

2. Peptide neurotransmitters are believed to be associated with mediation of the perception of pain, stimulation of the appetite, regulation of mood and other multiple functions. Abnormalities in peptide neurotransmitters have been associated with the development of schizophrenia, eating disorders, Huntington’s disease and Alzheimer’s disease.

  • Cholecystokinin (CCK), a fairly new discovery, is a peptide that has received a lot of attention in the last decade. It is believed that CCK increases relaxation inducing GABA while decreasing dopamine. Studies have linked CCK with anxiety and panic attacks in people with panic disorder.

3. Amino acid neurotransmitters are viewed by some experts as the main players in the neurotransmission process. There are two major amino acid neurotransmitters:

  • Gamma-aminobutyric acid (GABA) is a major inhibitory neurotransmitter that acts through a negative feedback system to block the transmission of a signal from one cell to another. It is important for balancing the excitation in the brain. Benzodiazepines (anti-anxiety drugs) work on the GABA receptors of the brain, inducing a state of relaxation.
  • Glutamate is an excitatory neurotransmitter and is the most abundant chemical messenger in the brain. It is believed to be involved in learning and memory. Certain diseases (such as Alzheimer’s disease) or brain injury (such as stroke) can cause too much glutamate to accumulate. This can set the stage for excitotoxicity, a process that can lead to damage or death of the affected brain cells.

It is important to note that GABA and glutamate are carefully orchestrated to balance each other. Dysfunction of one of these amino acid neurotransmitters affects the function of the other. Some experts believe that their excitatory and inhibitory balance influences all brain cells.”

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