The Tale of an ALS Survivor #9
Patient progress notes: From Dr. Van Houten, my primary physician.
The patient was seen by me on the porch of his house seated in a simple power wheelchair. He is noticing more difficulty breathing which is new. His leg function has also worsened. His arms are really unchanged but were so severely affected that they didn’t have “much to lose.” The patient was noted to have a borderline vitamin B 12 on previous screening by us and this was not addressed with supplementation and he would be interested in having injection therapy for this since this would be a nervous system strengthening action. Pleasant male, looks a little bit depressed but not anxious today.
My doctor’s appointments measured my decline and provided me with the drugs I needed to cope with my depression and pain: Lexapro for depression, Naprosyn 500 for pain.
Having friends is priceless: they might have a different view of your journey than you do. I was so glad.
I was going around in circles and it was getting tiresome. From glimmers of hope to complete disappointment was the obstacle course I had to travel.
It was hard to have an overview of my situation because I was so involved in it. I am so thankful that other folks have more support now. That’s why you need insightful friends and organizations like EverythingALS and CaringALS, which I work with to provide emotional, medical, and financial support.
I had never heard of a naturopathic doctor, but my friend Deborah had. It took a while to convince me to give the doctor a call, but when I did, I encountered a very insightful human being who was dedicated to a more natural course of healing. My new team member: Dr. Greg Weisswasser, M.D.
When I first met Dr. Greg, I was in my wheelchair and could move my head and two fingers just enough to control the joystick on my chair.
I brought my medical records to that meeting and when examining them, he noticed from my labs that my vitamin B12 level was at 229.
The B12 chart goes from 200 to 1100, and my number was 229. The medical report stated that people with values less than 300 pg/mL (picograms per milliliter) can experience unexplained neuropsychiatric abnormalities due to a B12 deficiency.
Neuropsychiatric symptoms include psychosis (delusions and hallucinations) as well as affective and behavioral changes, such as depressive moods, anxiety, irritability/lability, apathy, euphoria, disinhibition, agitation/aggression, aberrant motor activities, sleep disturbances, and eating disorders.
Sounds like a RED flag to me.
Because of my earlier exposure to high levels of lead when I was growing up in St. Louis, Missouri, I had gone to my primary care physician and told him, “I have an idea of what might be wrong. Could you give me a heavy metals test and a B12 test?”
“No problem,” he said, and my blood was drawn. I got a call a week later and was told my B12 was on the chart and no lead was found. That had been my only clue so far in this mystery.
The heavy metals test taken from my blood sample revealed that I had no levels of metals contamination.
Dr. Greg told me that heavy metals are found in the blood only when it’s a recent exposure. He said that heavy metals can be absorbed into your fat and your bones, and the best way to test for that was with chelation therapy, which removes heavy metals from the body by injecting a synthetic solution into the blood. The provoking agent that was used was DMSA.
These are the results of that test.
At last, this was the first tangible piece of the puzzle that I felt I had the energy to work with. This meant I was committing myself to doing all I personally could do to help heal myself.
This is my Treatment Plan.
Now I had at least two parts of my puzzle to work with.
Meet my other “team members”:
Fish oil, 6 caps a day. B12, one sublingual once a day plus injections once a week. Basic detox nutriments, 8 to 12 a day in divided times. SLF Forte caps twice a day. Blue Heron,-psyllium powder- 2 to 4 cabs a day in the evening away from other supplements. Vitamin C, 1 to 3 grams a day. Alpha lipoid acid, 3 to 4 caps a day. Cal Meg citrate, one scoop every day with water. Protein green drink every morning. Phosphitydl Choline, 2 gel caps a day. CoQ10, 1 cap a day. Vitamin E, one gel cap a day. Turmeric curcumin, 4 caps a day.
Suddenly, I was part of team of vitamins and supplements, and they expected me to be doing my part.
Chelation is a large commitment with visible signs of progress. I spent 18 months on and off in the program. My highest lead reading was 49 of lead; after 18 months my level went down to 15. It all takes time, and my time had an expiration date. My friends suggested many remedies, and I thanked them, but I stayed with Dr. Greg’s program to make sure I knew what was causing the results in my body.
My mind now had something to concentrate on every day. I went from hopelessness to feeling that maybe a part of the puzzle was revealing itself.
From having no hope to a little opening in the door of hope is a long way to come in ALS.
My diet was vegan for 19 years before this drama started to take center stage. One problem with my vegan diet was a lack of vitamin B12.
I had my old woodshed turned into a beautiful sauna. 8 to 12 minutes in the heat and then a minute cold shower. Another 8 to 10 minutes, and then another one minute cold shower; then 7 to 10 minutes and then one more cold shower, always ending on a cold shower. It was really cold.
I was starting to get busy. My new occupation was making sure I completed this regimen.