SCI Alternative Treatments - Are they Worth Looking At

• By SickOfBeingSick
• Posted August 27, 2009 at 3:50 pm
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Hi Learning1,

I was doing a search and just found your post from several months ago. I am very intrigued by the items you list and I can't believe nobody replied to this!

I would love to start a discussion regarding some of these alternative healing methods. I am not paralyzed, I only found this post in the paralysis resource area when I was doing a search. I usually hang out in "rare diseases" so I hope people don't mind me replying to this. Or maybe it can be reposted, I'm not sure what the netiquette would be, maybe somebody can direct me.

I do have CNS damage from repeated cases of meningitis and from high fevers due to an immune deficiency. My CNS is demyelinated and inflamed and I have brain injury. I have significant neuropathy and pain. My right leg was partially paralyzed with the first case of meningitis I had and my left leg was partially paralyzed 2 years ago with meningitis, but luckily the paralysis resolved. Still left me with significant CNS damage, though.

I have no money to seek out alternative practitioners, which is a problem. I'm still interested, though. I feel as you do, that alternative methods can fill in gaps that traditional medicine doesn't know how to treat or treats poorly. I also appreciate the more holistic approach that these practitioners have compared to traditional medicine.

I think traditional medical practitioners are for the most part an egotistical, arrogant group of people. They seem to believe that if they don't know about it, it doesn't exist. If it doesn't show up on a lab test, there is no illness or disorder. They don't recognize that Mother Nature may at times know more than they do or more than the pharmaceutical companies do. They don't recognize that the patient is also an expert because they live in the body in question 24/7. That there may be disorders that medical science doesn't know about and treatments that are effective even though they aren't currently under the purview of traditional medicine.

When I was a researcher, I was taught that it was just as important to "know" or recognize what I "don't know" as it was to "know" what I "do know". I was taught that humility was required to be a good scientist. That lesson has served me well, even beyond my career. I don't think medical students ever learn that lesson.

My crude attempts at self-administered cranial sacral massage are helping me tremendously. I want to learn more. Reiki has helped me tremendously, but the effects only lasted a few days. Acupuncture made the tinnitus that sounded like a freight train go away in my right ear (but not my left). Also helped with other pain. Chinese herbal preparations healed the chronic pneumonia that antibiotics didn't touch. I would love to try hyperbaric oxygen, but no money :(

I would also like to try spinal decompression. I have osteomalacia or adult rickets, from my immune deficiency and GI malabsorption. I can't sit up or stand up straight for any length of time and have constant pain. Again, no money, though. There has been talk of legislation to get alternative methods funded through insurance and medicare and medicaid. I hope that goes through. I have a child's rubber ball that I lay on top of on the floor. Again, my crude attempt at stretching my upper back where I have a lot of pain. It helps a little.

I want to learn some of the things I could do on my own, like cranial-sacral massage and pressure point therapy. I would also like to read more about the medical practitioner you posted about, Johnson. Haven't read the link you posted yet, but I will.

Thanks for a thought-provoking post, even if I am responding several months late and in the wrong forum for me.

Cathy

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• By Learning1
• Posted August 28, 2009 at 10:50 am
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Cathy,

Thanks for your response.

One of the many challenges with most of the alternative techniques is that they usually are not funded by medical expense plans, even though in a lot of cases they are as effecive, or more effective, than traditional medical practices, and usually are a lot safer. There just is not the money behind these to fund the needed studies to get them approved by the FDA. Knowledge behind these technologies is just too generic, and not something which can be patented. And to get FDA approval takes years, and costs millions and millions of dollars, even for things where there have already been a number of studies done. As a result, it is hard for a lot of normal individuals to afford, or even try, these technologies, especially in North America, where distribution of knowledge about them is more restricted.

Another challenge is that the traditional medical community knows little if anything about the technologies. This is in part because most of their knowledge comes from either the medical schools (funded in part by the drug companies), from the drug companies themselves, or from FDA controlled sources (and most on the FDA have a background related in some manner to the drug companies and their training). It takes an adventurous doctor or other health practitioner to step outside the normal, and then they risk losing their credentials in some areas if they incorporate non-standard treatment methods unless they word their advice very carefully.

The technologies I'm most familiar with are laser and scenar, though I understand that pulsed magnetic therapy also helps in many situations. And herbal and homeopathic remedies are often as effective, and sometimes more effective, than traditional medicines. For example, I've heard that teh CDC (one of the key disease control labs in the US) has found that one kind of oil of oregano is a better antibiotic than the most expensive antibiotics that are on the market, and works on basically everything when properly used. Yet you don't see doctors or hospitals using it. Early experiments with DMSO showed that the proper administration of it right after a spinal cord injury substantially reduced the inflamation and side damage caused, reducing or eliminating paralysis, yet there has not been any follow-up research, and it is still very seldom even considered, even though it seems to be more effective than what is normally used - DMSO is simply too cheap, and too generic, for a drug company to support.

No money is a real challenge in coming up with things to try. Because of the limited market, and higher production costs, most of the alternatives are not cheap, even though they are often far more cost effective than what the medical community uses - they are just not funded by the medical system. For example, the key nutritional product I take now is a specialized type of bio-algae, grown in Russia, and custom blended in Canada by the scientist who worked with it for year in Russia. It is the only product I know of with over 20,000 man-years of research. Basically what it does is feed the brain, and as a result, it gets the body so it can help absorb nutrients better, and it begins to get the body to repair itself. From there, the brain gets the other organs and areas of the body working properly. Dr. Kiriak, the research scientist behind the product (who directed and oversaw all the research), says that what it does is "awaken the genius within". If you had the money to try it for a few months, I suspect that you might begin to see some improvements.

I know that my wife took Fosamax for a number of years. A side effect of Fosamax is that as it holds on to old bone cells, it prevents new bone cell growth. About 6 or 8 months ago she stoppped taking the Fosamax. A month or two after that she started taking the bioalgae. A month ago a specialized scan was run on her (a machine designed in eastern Europe), and one quick thing it showed was that she had new cells all along the spinal area. She already has new bone growth happening in that area. And my autistic nephew, who had made substantial improvement with other things tried before (diet, scenar, laser, etc), after a couple months or so on the bioalgae, was actually calm going into a test (something that had never happened before) - something has to be happening within his brain.

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• By cworwa
• Posted August 29, 2009 at 10:53 am
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What's wrong with just using leg braces?


Chester Worwa

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• By graybeard
• Posted August 29, 2009 at 1:05 pm
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Therapies for 'cure', or to improve mobility? Honestly, if any of these worked, would they not be newsworthy? I am very leery of "ground breaking treatments" that havnt demostrated any effectiveness. I wont risk my few dollars on unproven theories. They have to work.

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• By Learning1
• Posted August 29, 2009 at 1:54 pm
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Chester, there is nothing wrong with using leg braces, but it sounds like there are things that are out there, beyond what traditional doctors work with and understand, which may help encourage the body to improve beyond the limits of traditional therapy. I know it helps in non-SCI situations. Laurance Johnston, who for a number of years has been connected with, and written for, a parapalegia veterans accociation, seems convinced that some of these methods sometimes help with SCI. If someone is not satisfied with how far they have been able to progress with traditional methods, some of the alternatives may be looking into.

Greybeard, to my understanding, none of the methods provide a "cure". What they do is help trigger the body to begin working with its own resources to improve its situation. For example, laser and magnetic pulse therapy, including Diadens, when properly used, apparently help with recovery from pressure sores. Rat experiements indicate that lasers hold a lot of hope for suppressing the body's defences which prevent healing, and helping stimulate neuron growth. This seems to be the same process they are trying with different drugs to suppress the body's strong defences in the spinal column area, and the same concept they are trying with both exercise, physio, and drugs, to help stimulate neuron growth (see the recent post on the Christopher Reeves Foundation site on this concept). Some people who have experimented with lasers on themselves have reported at least increased sensation, and it sounds like there have been at lesat a couple situations where more progress was reported. In Russia some of the more advanced scenar / cosmodic type units have apparently helped with progress from spinal cord and nerve injury, and clearly helped control inflamation and ultimate paralysis when used immediately after injury. One study from London indicated that magnetic pulse stimulaton to the cranium helped strengthen signals to the spine, and the stronger signals helped increase limited neuron connections, and it was suggested that part of the reason was that it created basically the same result as extensive physiotherapy. Vibration Plate technology has apparently been shown to slow and sometimes prevent muscle mass loss in paralysis situations. And some of the other techniques that Laurence Johnston discusses may also have their place. So I wouldn't dismiss things out of hand.

At the same time, being cautious, and not jumping on every unproven hope, is also wise. But waiting for the medical community to get on board, even for something that is effective, may be a long wait, especially since it is outside their training and experience. And getting FDA approval for making any type of claims for anything may be even further off - it costs a fortune in research, and years of beuracracy, to make any headway, and most of the alternative techniques, etc, are too generic and can not be patented to the degree which warrants investing fortunes in doing the studies. It looks like progress in many of these areas will probably come from individuals who are not afraid to try something new or different, or who are desperate enough to try something new, who are also willing to share what they tried, how they tried it, their small successes and improvements, and what didn't work for them.

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• By SickOfBeingSick
• Posted August 29, 2009 at 2:19 pm
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Hi Graybeard,

I understand your skepticism. My story is that I was completely skeptical about alternative medicine. Being a former scientist and researcher, I thought these remedies were complete bunk. Until I came down with chronic pneumonia that wouldn't go away. The antibiotics didn't do a single thing for me and I was getting so low on oxygen that I was passing out just from walking a few steps. My lungs became scarred.

Finally, out of desperation, I agreed to talk to my friend's stepfather who practices oriental medicine. He gave me a couple of bottles of Chinese herbs that immediately cured my pnuemonia. Most likely, it wasn't bacterial and the antibiotics weren't doing anything, while the Chinese herbs worked on other things besides bacteria.

I then started trying everything alternative under the sun. Spent a heck of a lot of money, for very limited results. I did find a few things that worked, and worked in a spectacular manner, but there was so much trial and error involved.

Right now mainstream medicine is not helping me. However, I can't afford all that trial and error anymore. I do believe that there are some alternative remedies that can fill in gaps that traditional medicine doesn't treat or treats poorly. Quite often, these cures either don't have funding to get FDA approval, or are for things that can't be patented and don't have the $$$ potential that a new pharmaceutical would have.

That's where a forum such as this comes into play. Here I can ask people what their experiences are without going out and paying for the alternative remedy myself. If I hear enough reports from reliable individuals that an alternative remedy works and works well, then I will try it, if I can afford it.

Learning1, I am wondering if we could start a section on Inspire for discussion of alternative remedies? Then these discussions could be brought to individuals with all different kinds of disorders and we wouldn't clutter up other forums such as this one with discussions that other people consider "off topic" with people who aren't interested in alternative medicine and don't want to hear about it (no offense intended to you, Graybeard, and others)? I will send an e-mail to the moderators asking about this.

Cathy

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• By SickOfBeingSick
• Posted August 29, 2009 at 2:29 pm
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Looked at the groups and there is a set of groups devoted to alternative remedies called "Alternative and complementary medicine groups". Just FYI. I didn't know about these. Don't know if you knew about them, Learning1.

Cathy

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• By Learning1
• Posted August 29, 2009 at 3:46 pm
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Cathy (SickOfBeingSick),

You're right - it looks like a good idea to move the discussion to a more generic platform. When I began posting, I didn't know of the groups devoted to alternative remedies. I ran across the forum looking for information for a friend with SCI. Along the way I also ran across a number of alternatives which seem to help with some SCI situations, many of which are summarized in Laurence Johnston's book and site (linked to above). I'd thought that having a central place for the alternative information on SCI related problems might be a good asset. But it appears that there isn't the SCI specific interest out there. The discussion on LLLT (low leve laser therapy) is the only alternative I've seen much discussion on at this line. Some of the limited progress to date has been posted there.

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