Following our initial visit at Dr. Jerry Kartzinel’s office, we arrived home with a game plan. The game plan seemed simple: complete the stool, urine and blood tests. The results were directly sent to Florida for him to review.
Comprehensive Stool Analysis
We collected three different stool samples. The stool analysis kit consisted of three different tubes and each sample collected was tested for something different. This test looked for beneficial bacteria levels, intestinal immune function, overall intestinal health, and inflammation markers. For more information regarding this test, click HERE.
Organic Acid Test (OAT)
Surprisingly difficult, we were charged with collecting a morning sample of urine. The kit came with a catching bag to put in the diaper at night but it never stayed in place. At the suggestion of our friends, we put about 20 organic cotton balls in the diaper instead then squeezed urine out of them to put in the urine sample cup. This test looked for intestinal yeast and bacteria. For more information regarding this test, click HERE.
The most difficult test of the three because it required a substantial amount of blood be collected. The blood tests that needed to be completed, per doctor’s orders were: Hemogram test, Automated Differential test, IGG test, Vitamin D 25-Hydroxy test, Comprehensive Metabolic Panel test, Lymphocyte test, Genetics test, and Carnitine test. At the suggestion of our friends, Juan scheduled an appointment at the laboratory at our local Children’s Hospital. The visit took about 45 minutes and it required three different nurses to actually get it done. Overall, two test tubes of blood was collected and sent off to the labs.
There was no specific deadline that we needed to meet, but the sooner the tests were done the sooner the results would get to the doctor. It took us about two weeks to get everything completed. We were instructed to notify the doctor’s office once all the tests were finished.
We suspect that the results were sent to the doctor’s office within weeks, but because of the holidays our first follow-up consultation wasn’t scheduled until January 22, 2019. Luckily, it was an observed school holiday so I was at home. Juan made plans to work from home and we planned to Skype Dr. K together. He would go over what the tests indicated about Jacob’s current level of functioning.
Let’s start with the good news.
The stool tests revealed that he had a good balance of good and bad bacteria in his gut. The blood testing showed his complete blood count (CBC) was normal. This meant that his overall health was not compromised and that no other disorders were detected at this time. Immunoglobulin (IGG) test came back normal, which translated to a healthy immune system. The Comprehensive Metabolic Panel (CMP) also came back normal indicating typical overall body chemistry and metabolic functioning. The Lymphocyte test also came back with counts in the normal ranges. Jacob’s body was naturally producing typical amounts of B and T cells which allowed him to fight off infections like most other people.
Now, the areas of concern.
The stool test reported elevated inflammation in the gut. He tested high specifically for e. Coli and strep. The OATS test confirmed the reports from the stool test because it also showed high bacterial and yeast overgrowth in the digestive tract. The Vitamin D 25-Hydroxy test revealed that Jacob was low in Vitamin D. Studies report that people with Autism Spectrum Disorder (ASD) are usually low in Vitamin D3, which is concerning because it plays a significant role in brain development. Results also indicated that L-Carnitine levels were low. L-Carnitine plays a role in the transportation of fatty acids to the mitochondria where energy is produced and transported to cells. It is reported that people with speech and motor delays usually have low levels of L-Carnitine because the body is not producing enough energy to execute those functions specifically. Another area of concern was the revelation that Jacob’s genetic testing showed he inherited the MTHFR C677T+/- and A1298C-/-gene mutations. These gene combos that Jacob has impacts the functioning of the methylation. The functions of the methylation are key in regards to speech development, ability to process toxins, building neurotransmitters, building immune cells, producing energy and gene regulation. As curious as were about which one of us might have passed that genetic mutation down to Jacob, we haven’t ordered any genetic testing on ourselves.
Our Next Steps
With all that information explained and clarified, we were then given a list of supplements to slowly start. We would begin one at a time, two to three days apart, so we could carefully document any adverse reactions – physically or behaviorally. Dr. K reminded us to email him any questions as we started the first round of Jacob’s treatment plan.
The supplements given: L-Carnitine (1 mL, twice daily); DMG – Dimethylglycine (1 mL, twice daily); Nystatin (1 tsp, twice daily for 10 days); Omega fish oil (1 tsp, twice daily); antibiotic Sulfamethoxazole-Trimethoparim (5 mL, twice daily for 10 days); Methyl B-12 shots with Folinic Acid (one injection every other day); Vitamin C (1/8 tsp daily); Vitamin D3 drops (one drop daily with food); Fiber (1 tsp, twice a day); Melatonin (1 mg per night as needed).
Four of the supplements were prescriptions given to us by the doctor: L-Carnitine, antibiotic Sulfamethoxazole-Trimethoparim, Nystatin and Methyl B-12 injections. With the exception of the B-12 shots, the rest of the prescriptions were sent directly to our local pharmacy and ready for pick-up that same day. The Methyl B-12 injections came directly from Lee Silsby Compounding Pharmacy in Ohio. We ordered Barlean’s Fish Oil and Melatonin through Amazon, although both can be purchased at Sprouts. The Fiber was purchased directly through Dr. K’s line of products. He will suggest his products as an option, but will also provide information for alternative brands. DMG, Vitamin C and Vitamin D3 we purchased through Kirkman’s line of products.
The follow-up consultation took about an hour. Dr. K went through the lab results, good and bad. Then spent time going over the supplements he recommended, informing us of their purpose, reactions to possibly look for and how often to give. The treatment plan gave us a road map, whereas we didn’t have one before. As overwhelmed and stressed out I was about the costs and responsibilities of the monthly supplements, Juan did an amazing job of just taking over. We share a Google folder titled “Jacob’s Recovery” where Juan created Google sheets related to tracking the introduction of each supplement and also tracking biological functions related to bowel movements, eating patterns, and sleeping patterns. We also do our best to update the Google sheet when we notice behavioral differences, such as the acquisition of new words or a reduction or increase in specific behaviors.
We knew going into this that we could commit to the biomedical feedback approach, using medical interventions to address behaviors related to Autism, for as long as we could see progress. For the most part, we were met with lots of support from friends and family. Does it sound quacky to fly to Florida to meet a doctor? Yes. Did people tell us that there had to be a doctor in Dallas that does the same thing? Yes. Could they give me so-called Doctor’s name and number? No. Did people question the hourly rate we pay for Dr. K’s services? Yes. Did we care? No.
At the end of the day, Juan and I agree that we would do everything possible to help Jacob achieve his highest level of functioning. This wasn’t so much about getting rid of Autism, as it was how to approach his lack of development on a medical level. If we could intervene early and help the body supply specific things that he naturally lacks, for one reason or the other, than we would.
I went to bed that night grateful for Dr. K and medical science. I went to bed hopeful that this could possibly give Jacob an advantage over how his body was functioning with no supplemental support. I went to bed dreaming about the best, but knowing that only time would tell if this would actually work.
Signed with love, Kat.