No system is perfect; they all have the vices associated with their virtues. The profit motive drives much of our medical system, but it can ignore things that show no profit possibilities. Also, much of our medical system is driven by life and death outcomes. So things that are just uncomfortable or inconvenient are frequently ignored. As I age I find that I need to provide more of my own medical care as my body’s changes are just not important enough to involve others.
This is my list of conditions where I am all or part self-medicating:
- Blood condition precursor to Chronic Myeloid Leukemia (CML)
- Osteoarthritis
- Supraventricular Tachycardia (SVT)
- Too much trouble finding the right word
- Aggravation with politics
This is my list of solutions to those things:
- Low Dose Naltrexone (LDN)
- Glycine (an amino acid)
- Taurine (an amino acid)
- Acetyl l-Carnitine (an amino acid)
- Lithium Orotate
Low Dose Naltrexone – In my 60’s I was diagnosed with a blood condition precursor to CML. I was told “It will probably develop, but don’t worry. We can treat it.” Of course I worried; it was the first big medical thing that had happened to me since I was 5, when I had polio (when my parents worried). One of the places I took my worry was to a friend, an inventor specializing in medical things. He told me to take a look at LDN. I looked it up on line and found ldninfo.org. I read the whole site, printed out a dozen of the pages, and took them to our GP – who actually read them. His conclusion was the same as mine: “It doesn’t cost much and is unlikely to cause harm if it doesn’t work.” He wrote the prescription. A year or two later I no longer had the condition. The blood guy (a/k/a hematologist) said “Spontaneous remission.” I tried to tell him what I’d done but he wasn’t interested.
Naltrexone was developed to counteract opioids; it blocks their effects. The standard therapeutic dose is 50mg every 8 hours. The standard LDN dose is 4.5mg, once daily at bedtime.
A few years later my wife, Paula, was diagnosed with fibromyalgia; the initial prescription did little. So she began the effort to have her doctor prescribe LDN; it was a long effort, but she eventually succeeded. It somewhat worked: she describes it as 90% effective, and effective enough. A few years later it stopped working. The compounding pharmacist suggested trying one or more 0.5mg capsules with the 4.5gm capsule. One was enough, 5mg was her new dose.
I’ve kept taking and reading about LDN. A couple of years ago I found the LDN Research Trust, which is even more comprehensive than the LDNinfo site. It helps you find someone to write a prescription and pointed me to a company that makes LDN in pill form, which should be cheaper and more reliable.
Glycine – In my 50’s I was diagnosed with osteoarthritis and told to take naproxen; I did so for a year or so. And then decided that I didn’t want to take a daily pain killer. I though of a friend that I co-drove with at Daytona in the early days of IMSA; he was 70 at the time (ancient in my eyes then). We had little money so we shared a room. In the morning he worked every joint in his body, “to keep them working,” he said. He finally quit driving race cars because it was interfering with his tennis. Anyhow, I stopped taking naproxen and started daily exercise. I still had a little joint pain, but I’ve kept exercising, and learned to like it.
About 15 years ago I bumped into Steve Gibson’s efforts to fix his sleep. He was waking at 1am and staying awake until 3 or 4. I was nothing like that, but I thought I could sleep better. I tried his vitamin concoction and convinced myself that I was sleeping better. Probably not. But as his approach evolved, I kept up. Along the way I began adding powdered glycine to my drinking water. And the very minor joint pain I had went away. It makes the water taste a little sweet, and if I take too much I produce some really bad smells. But I’ve learned how much to add to water to get my benefits without bothering others. For me, it’s about 1/2 teaspoon per liter of water.
Note on amino acids: Among other things, they are the building blocks of protein and they have received a lot of study. However, most of the studies are on fruit flies and rodents. So the results are only suggestive. My experience with glycine made me aware of the hypothesis that age can reduce the body’s ability to extract needed amino acids from proteins. So I became more willing to try amino acids. They are cheap, easily obtained, and unlikely to cause damage.
Taurine – One night in my 60’s I woke up with a racing heart; it was over 200. I woke up Paula, and she took me to a hospital emergency room. I was seen quickly, and they gave me a shot that stopped my heart temporarily (not a good thought!), and it was normal when it restarted. They told me I had SVT and I visited a cardiologist for the first time. She was impressive. She explained that it was a miswiring of my heart nerves and that it could happen again. She prescribed a pill to carry with me and to take if/when it occurred again. She said that if it happened too often there were other things that could be done, but I didn’t like them. So I lived with it, as many others do.
I first read about Taurine on Steve Gibson’s news site. In his article about Taurine, an amino acid, he commented that it tends to stabilize heart function. Well, my SVT could benefit from some stabilizing, I was having an episode every 2-3 months. I started taking a gram of Taurine twice a day, SVT frequency dropped to 3-4 months. I was diagnosed with sleep apnea and started using a CPAP machine, SVT frequency dropped to 4-5 months. I increased dosage to 2 grams twice a day, SVT frequency dropped to 6-8 months. Finally, I increased dosage to 3 grams twice a day and it’s been more than 2 years without an SVT episode.
Acetyl l-Carnitine HCI – I’ve been discussing Creatine with my son for several month. He and my grandson are taking it to improve athletic performance. I read some articles, but wasn’t convinced. (In my 80s I don’t care about improving my athletic performance.) Then I read an article in the Life Extension Magazine about it. What most intrigued me was the summary of Carnitine effects: “Carnitine intake boosted mental and physical energy levels, reduced mental and physical fatigue, enhanced cognitive and neurological function, and improved frailty scores.”
This sounded good. I ordered some and tried it, taking 1gm after breakfast and dinner. After a week I realized that I wasn’t unable to find the right word any more. This had been a growing problem for me, it was noticeable enough that Paula encouraged me to see a neurologist. I did, and after tests he said it was just aging – but to come back in a year for a comparison. So the Carnitine fixed a real problem for me, without my expecting it to do so! (BTW, this occurred about 10 months after I last saw my neurologist; I have an appointment in about a month and it will be interesting to see what he thinks of the effects.)
Then I went skiing. In the past when someone lifted the safety bar too early I would have a pang of fear, and I would grab something. (I always sat on the outside so there was something to grab.) Now, no pang! I just said to myself “Oh, the bar is up already,” without any other reaction. Two days later we went to Newport, RI for dinner, to our favorite restaurant. The Newport Bridge is high, narrow, subject to winds, and you can see through the sides. Normally, I turn on the radio or a book to concentrate on as I drive white-knuckled across the bridge. This time, just minor fear! No white knuckles! Just high winds and a mostly comfortable drive across with hands relaxed. A little fear, but not important; I could do what I wanted! Two good, unanticipated effects of Carnitine – “unanticipated” to me indicates that I couldn’t have made up the effects.
Lithium Orotate – I subscribe to and read the Life Extension Magazine every month. Overall, I’m not impressed with most vitamin research; the sample sizes are too small and they pay too little attention to confounding effects. But the LE Mag tries, and I accept many of their results. They mostly pass my lower bound “it can’t hurt, it might help, and it’s not expensive” test. One of their reported studies indicated that 1mg of Lithium Orotate daily might reduce the likelihood of dementia. So I began taking it, didn’t expect any changes and found none.
Over the next couple of years politics became more unpleasant, which bothered me. So I read more about Lithium Orotate and thought that increasing my dose to 5mg might reduce the bother. It tried it, and it did. So I now take 5mg of Lithium Orotate daily; I think of it as my political vitamin.
Fascinating!!
Thanks for sharing!
I plan to try the carnitine and glycine. My osteoarthritis is so bad I have been on 40 mg of Cymbalta /day for years but it doesn’t really do the trick anymore. My hands, feet, and spine are very painful most of the time. So I don’t know if talking to my doc about LDN would help or not. I was once diagnosed with fibromyalgia but now they say I have ankylosis spondylitis. (I hate taking methotrexate and the shot Cimzia for that.)
Anyway, I have one question: in the middle paragraph of your heading under “carnitine” I can’t tell when you took the carnitine, before or after your trip to the neurologist. Did it help or not help with your memory lapses? Can you please clarify?
Jeanne
Thanks for your comment, Jeanne.
Ankylosing Spondylitis, which Google says is the same as ankylosis spondylitis, is listed on the ldninfo.org site under “Other Autoimmune Diseases”. In my experience, this indicates that more than one person has reported to them that it works. It’s anecdotal, but that’s the best endorsement you’re likely to get. From reading many MS reports, I’d guess that this indicates that the probability it will work for you is greater than 50%.
I also googled “ankylosing spondylitis low dose naltrexone” and found both articles and anecdotes. I looked at a couple of articles and they seemed weak; few test subjects and/or poor experimental design. Just not good, and not surprising given the lack of funding for LDN research. I found the anecdotes more interesting as they were more clearly written.
If I were in your shoes I’d want to try it, and I’d lean on my physician to write the prescription. I’d even threaten to go around them with one of the physicians listed on the LDN Research Trust site. I’m not sure I’d do it but it ought to get their attention. At the least, I’d want real reasons for not trying it. Not just “It’s not a standard treatment.”