Information blog for people suffering from both Neuropathy and HIV. An opportunity to exchange experiences, tips and opinions.
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Okay, it's almost 2012 and what would a New Year be without a few resolutions to aspire to? Whether New Year's resolutions are a part of your life and whether you follow them fanatically, or fail after the first day, doesn't really matter. It's the thinking about ways to improve your situation that counts. As someone with both HIV and neuropathy to think about, you'll not need reminding that life can always be better but because you're confronted with these problems day in and day out, you may never see a moment to stop and think about whether you're really doing your best to keep your head above water.
Today's post comes from the Positive Side (see link below) and was written by Lark Lands, who has been featured on the blog before. Interestingly, it was written for people with HIV, in 2001 but is not out of date because there is nothing here that doesn't apply to neuropathy sufferers today. You may also find it a little prescriptive and automatically reject the idea of someone, 'telling you what to do' but even if you just stop and think about one way you can improve your health situation, you've taken a step in the right direction. Apart from that, everything suggested is good advice - we all know it! We all also know that the pain and/or discomfort of neuropathy can perversely make you lazy because the idea of making an extra effort, just seems too much. Therefore today's post is just a gentle reminder, nothing more.
10 Commandments for Living Long and Well with HIV by Lark Lands
Commandment #1:Manage your disease. Do the work.
Avoid the Humpty Dumpty Syndrome. We can’t keep waiting for people to fall apart so we can try to patch them back together. There are two parts to this commandment:
Don’t wait to start managing this disease. Begin now.
Understand what it really means to manage a disease. It’s hard work that never ends, but it’s worth it when the payoff is a disease so well managed that you are living well with it, not just longer.
Commandment #2: Eat what’s good for you.
If you don’t have the nutrients, you can’t build the CD4 cells, T cells or any other immune cells. You’ve got to have:
- good levels of protein
- good levels of unrefined complex carbohydrates (brown rice instead of white; whole-grain breads, crackers, cookies and pasta instead of those made with nutrient-poor white flour)
- lots of fresh fruits and vegetables
moderate amounts of only the good kinds of fats (mono-unsaturated fats like olive oil and natural fats like butter; avoid the partially hydrogenated oils widely found in margarines, shortenings and many baked goods and snack foods. Read the labels!)
- Wash all that down with lots of healthful liquids (water, juices, teas and the like, not chemical and sugar-loaded junk drinks). That’s the way you give your body the building blocks it needs to keep up the immense battle against HIV. Always make sure the food you eat and the water you drink is safe.
Commandment #3: Do everything necessary to help your body digest, absorb and use food properly.
Even if you’re eating the right things, it won’t do you any good if you don’t have good digestion and the ability to use the nutrients. Many people need to improve how their bodies handle food by supplementing with pancreatic enzymes, vegetable enzymes, hydrochloric acid, acidophilus, L-carnitine and L-glutamine.
Commandment #4: Supplement your good diet with nutrients that will help you have slower disease progression and a lot fewer symptoms along the way; always include optimal levels of antioxidants.
Research has shown that supplying the right level of nutrients in the body is associated with reduced disease progression and improvement in long-term survival. In addition, nutrients and enzymes can reduce, eliminate or contribute to eliminating many drug side effects and other symptoms such as fatigue, skin problems, diarrhea, neuropathy, digestive problems, memory or other mental problems, wasting and others.
Commandment #5: Protect your body in every way possible from the damage that infections cause and give your body what it needs to repair itself when damage does occur.
First, use the best available treatments; then supply the particular nutrients that the body can use to repair itself. In particular, repair the intestines with zinc, vitamin A, vitamin B6, vitamin E, bioflavonoids, vitamin C and, especially, L-glutamine. If necessary, use doses of up to 30 to 40 grams of L-glutamine per day until repair is effected, followed by lower doses (5 to 10 grams daily) for maintenance. You can’t absorb nutrients or drugs if you don’t keep your intestines healthy, for which glutamine is crucial.
Commandment #6: Do prophylaxis, where appropriate, and add to your pharmaceutical prophylactic regimen the nutrients and natural therapeutics that help protect you from infections and that help you fight them when you get them. Important nutrients for protection from infections: L-glutamine (intestinal, lung, oral and cervicovaginal infections), acidophilus (Candida overgrowth and other intestinal infections), oregano extract (Candida overgrowth), folic acid (anal or cervical cancer), and a good level of nutrients in general. Remember: Your body’s response to any infectious agent or abnormal cell is absolutely dependent on the nutrients needed for a good immune response.
Commandment #7: When appropriate, take the best available antiretrovirals in the best possible combinations and, while you do it, protect your body from their side effects.
When you reach the point at which HAART (highly active antiretroviral therapy) is appropriate, it is terribly important to remember that you must have good nutritional status for the body to use drugs effectively. By maintaining the optimal nutrient levels that promote strong immune function, your body will be better able to work with the drugs to suppress the virus and slow disease progression. When the virus is suppressed, optimal nutrients will also help in the restoration of lost immune function since nutrients are the building blocks for immune cells. Always remember that virtually every known nutrient is related to some aspect of immune function.
Last, but definitely not least, nutrients may help protect you from drug side effects:
- for liver-toxic drugs (indicated by increases in your liver function tests): alpha-lipoic acid, NAC, vitamin C, L-glutamine, L-carnitine, silymarin (milk thistle extract)
- for the toxicity to mitochondria (your cells’ energy factories) caused by nucleoside analogues (which may, in turn, cause or contribute to neuropathy, muscle aches, some aspects of lipodystrophy, and lactic acidosis): carnitine, coenzyme Q10, the B vitamin riboflavin, a plentiful supply of all the important antioxidants (alpha-lipoic acid, N-acetyl-cysteine, vitamin E, vitamin C, carotenoids and selenium)
- for drugs that cause neuropathy: alpha-lipoic acid, L-acetyl-carnitine, gamma-linolenic acid (GLA), magnesium, B vitamins (including B6, B12, thiamine, biotin, choline, inositol)
- for bone-marrow suppression: B12, vitamin E
- for kidney-stressing drugs (such as indinavir/Crixivan): Drink lots of fluids!
In addition, to help your body process drugs, supply the nutrients that your body will require when breaking them down. For AZT, that means B1, B3, B6, B12 and magnesium. For ddI, you need molybdenum (a microtrace mineral), riboflavin and iron.
Commandment #8: Handle the hormone problems of this disease.
For both men and women, maintaining testosterone and using, where appropriate, recombinant human growth hormone (Serostim) may help prevent the loss of the body cell mass (muscle and organ tissue) that keeps you alive, while helping you look, function and feel better. Women may also need female hormone replacement to prevent worsening of PMS, perimenopausal or menopausal symptoms.
Commandment #9: Exercise.
Just do it. You need to build up the muscles with progressive resistance exercise like weight training. That’s what gives you a body with plenty of the lean tissue that you need for survival.
Commandment #10: Program the mind toward healing.
The power of the mind to boost the body toward healing is amazing. And the power of hope is one of the best tools you can have for long-term survival. Bob Publicover, incredibly long-term (two decades and counting) survivor, says it best: “Never give up, never give up, never give up.”
During your appointments with your doctor(s), you may hear various terms which describe the sort of pain you are feeling. He or she may question you closely to find out where your pain is and how you would describe it and then give it a scientific name. People with HIV and neuropathy can also easily suffer from other sorts of pain depending on their other medical problems and it's important to know what the pain is and where it comes from, so that one problem isn't confused with the other. That makes it easier to deal with because you more or less know which ailment is to blame and can adjust the treatment if necessary. Neuropathic pain is often the easiest to identify because there's no other feeling like it but other sorts of pain can quickly confuse the picture and lead to more patient stress. This useful video from Dr.Marc Darrow (Physical Medicine and Rehabilitation, Joint Rehabilitation Sports Medical Center, Inc.) is from videojug.com (see link below) and mentions many pain types including peripheral neuropathy specifically. If you can't be bothered to sit through the video, a very useful text transcript is reproduced below.
What are some specific types of chronic pain?
Well, we have several types of chronic pain that we can describe. One is visceral pain, which has to do with the inner organ systems. Another is somatic pain, which has to do more with the musculoskeletal system in the body. So, we're dealing with tendons, ligaments, capsules around the joint, things of that nature. Another can be what we call neuropathic pain. That has to do more with the nervous system and how it can become unregulated, creating a continuing pain cycle, even when there's no noxious stimulus that would normally cause pain present at that time.
What is "somatic pain"?
Somatic pain is pain that deals really with the body as a whole; maybe the muscular, skeletal system would be another term for it. We're dealing with the joints of the body. We're dealing with the tendons that move the joints. We're dealing with ligaments that hold the bones together and the collagen that wraps around the joints; things of that nature. We're dealing with the collagen, the bones, and the muscles.
How is somatic pain treated?
Due to the fact that somatic pain deals with so many different types of pain, there's no easy way to describe how to treat somatic pain unless we know which specific form of it we're dealing with. If it's a joint pain, we might be dealing with an injection into the joint. We might be dealing with using a cortisone injection which is a steroid injection to dis-inflame the joint. We might be using a trigger point of a local anaesthetic into the area around a joint. We might be using prolotherapy that actually grows more collagen, or cartilage, inside of a joint. If it's a tendon, the same type of things can be used. There can be acupuncture that can be used. For somatic pain, it can be great to use physical therapy, which is either active; moving the body, strengthening, doing more range of motion, or doing passive modalities; things like ultrasound, electrical stimulation, things of that nature.
What is "visceral pain"?
Visceral pain is pain that comes from the organs inside the body, the viscera of the body. It can be just about anything you can conceive of that goes on inside the body. Things like cancer cause visceral pain. Cancers grow and become space occupying lesions that put pressure on the organs and they can also metastasise. Cancers can metastasise outside of the organ systems through the blood and to other areas, or by just pushing through the body, and we can end up having things like bone pain coming from visceral pain. We can have abdominal pain from the GI system; from the stomach, let's say, and you could have disastrous abdominal pain due to things like spasms in the stomach. They can be very non-specific things that are very difficult to treat.
What is "bone pain"?
Bone pain is very bad pain. Unfortunately it is typically a pain that comes from a cancer that's metastasized the bones. When the cancer gets in the bone, which can be locally, it can be what we call a primary tumor of bone, where it starts in the bone. It starts to expand within the bone and that's extremely painful. And cancer can also actually start to eat the bone away. It's "lytic" in nature, meaning the cells of the cancer will chew up the bone, and cause extreme pain from that.
What is "osteoporosis"?
Osteoporosis is a disease of bone. It's a disease of actually losing bone. Osteoporosis takes place from not building up enough bone when we were young. Bone mass will often peak out at around the age of 27 or 28, and then start to diminish after that period. The reason for the bone growth is because our hormones are high in our youth, and then as we hit our thirties and later, the hormones (things like testosterone, oestrogen, and progesterone) start to diminish in the body, and we start to actually lose bone.
What is "osteomyelitis"?
Osteomyelitis is really a combination of a few words. One is “osteo” which means bone and “itis” which means inflammation. The term strictly though refers to more of a infection in the bone. Now in the bone we have what are called diversing canals which are little caverns through the bones and we have trabeculli which are little openings in the bones and when bacteria gets into these and infect the bone it's very difficult to get rid of them. We often have to use IV antibiotics. Often times with osteomyelitis a person will lose the infection at least in terms of the white count in the blood going down so it looks like the infection is gone and then maybe five years later it will reappear. It's just very difficult to remove infection from bone.
What is "arthritis"?
Arthritis is a word that comes from a couple of words. One is "arthro," meaning "joint", and the other is "itis," meaning "inflammation." Arthritis, meaning "inflammation of a joint," refers to the destruction of the joint, which can be from an erosive type of arthritis like rheumatoid arthritis, psoriatic arthritis, and things of that nature. Or, it can be like osteoarthritis, which is just a breakdown of the joint. Osteoarthritis can be the cartilage being worn out, or it can be from an injury that affects the cartilage or the joint and creates instability in that joint.
How can bone pain be treated?
Bone pain is often treated with anti-inflammatory medication, which seems very simple because we don't think of anti-inflammatories as one of the big guns in medicine. Many years ago, people that had bone pain were often treated with narcotics and other things of that nature, which were called the big guns of analgesics. Since then there have been studies that have shown that anti-inflammatories often do an even better job of reducing the inflammation of whatever it is that's causing the bone pain.
What are "muscle spasms"?
Muscle spasms are actually involuntary contractions of muscles. What doctors often will do, is they will treat the muscle spasm, whereas in my practice I'll treat more of what we call the emphasis of where the muscle will attach to bone. The reason for that is I find that if we get to the actual emphasis of the muscle attachment and we treat that, the muscle spasm will go away. Now, if someone has an acute muscle spasm, it may be a good idea to use a muscle relaxant for them, or they may want to get a trigger point injection or a tender point injection into the area where there is a spasm. This can often just reduce it, and it can often eliminate the muscle spasm in a minute or so.
How are muscle spasms treated?
If a doctor can actually feel a muscle spasm (what we call palpation, by touching) we can inject into the area. We can use a dry needle, like an acupuncture needle, and just stimulate the area, which often will reduce the muscle spasm. We can inject fluid into the area where there is muscle spasm. We can use a local anaesthetic. We can actually use saline; that will help. Sometimes I will pepper saline around an entire muscle area, and that will reduce the spasm. We can inject into the area of muscle spasm with a steroid injection, which is an anti-inflammatory with a little local anaesthetic mixed in with it. You can use electrostimulation to help get rid of the muscle spasm, to get rid of the pain. You can also use cold therapy for the pain, and sometimes you can use heat therapy for it. Chiropractic treatment works very well for muscle spasm. There is just an endless array of tools that can be used in medicine for muscle spasms.
What is "peripheral neuropathy"?
Peripheral neuropathy is a syndrome in which there is an actual injury of some sort to the peripheral nervous system. The peripheral nervous system refers to the nerves that are outside of the central nervous system (which is comprised of the spinal cord and the brain). The nerves in the peripheral nervous system are those that are coming down the arms into the hands, down the legs into the feet, or are wrapped around from the spine into different nerve route distributions.
What are some causes of peripheral neuropathy or nerve pain?
The highest incidence we find of peripheral neuropathy is from diabetes and alcohol abuse. There are also other reasons. HIV often has a peripheral neuropathy that comes with it, and another cause of peripheral neuropathy may just be a nutritional deficiency, for example a deficiency of B12.
What is "sciatica"?
Sciatica is a syndrome of inflammation of a nerve. When we have a compression or an irritation of a nerve root in the lumbar sacrum spine, which is the lower spine, then where those nerves come out of the vertebrae, there may be an impingement in this plexus (complex of nerves). By impinging on a nerve in the back, a person can feel pain or numbness, or what we call a paraesthesia, which is an unusual sensation all the way and down the back of the leg, the side of the leg, and down into the foot.
What are the symptoms of nerve pain?
Nerve pain can be experienced in many different ways. It can be an aching pain, a dull pain, a sharp lancinating pain, or it can be a tingling pain. Nerve pain can be experienced in just so many ways. Nerve pain can also be experienced as just a numbness.
How is nerve pain treated?
Nerve pain is treated in many different ways like all pain is. When we can't get to the source of what is creating nerve pain, we often will use anti-seizure medication and anti-depressant medication, which you would think doesn't apply to what that medication was made for. They'll be used for off-label purposes that they weren't generally manufactured for.
What is "circulatory pain"?
The term for circulatory pain is usually claudication, which means that there is ischemia at a certain area of the body. Ischemia just means a lack of oxygen. Oxygen is what gives us the ability to create energy in an area of the body. In a claudication area, or an area where there's ischemia, the circulation is not good because there may be atherosclerosis, or hardening of the arteries, or blockage to an area which we call peripheral vascular disease. We'll find that often in the case of someone who's walking and their legs start aching. That's what we call peripheral vascular disease claudication pain.
What causes poor circulation?
There are many reasons for poor circulation. One can be Vasculitis, meaning inflammation of the blood vessels to the area. There is also a syndrome called Raynaud's syndrome, where the blood vessels in the fingers when it's cold, spasm and none of blood gets through to the area and thus the oxygen can't get to that area. Poor circulation can also be from a block of the blood vessels, from a mobilization or just use.
What causes circulatory pain?
Circulatory pain is usually caused by a lack of oxygen to tissue. When there is circulatory pain, there's usually a blockage or a diminishment of blood going through to an area. When we have poor circulation to an area, we'll often feel pain because not enough blood is getting to that area, and therefore not enough oxygen is getting to the area.
Thanks for watching the interview Specific Types Of Chronic Pain For more how to videos, expert advice, instructional tips, tricks, guides and tutorials on this subject, visit the topic Chronic Pain.
Acupuncture is one of those treatments that divides opinion. Most people reason that if it has worked for thousands of years in Chinese medicine, it must be good. That may well be so and we've all seen the TV clips of operations undertaken with acupuncture needles but without anaesthetics but like any other treatment, alternative or otherwise, evidence-based proof is needed that it works when applied to nerve disease. Neuropathy is such a difficult affliction that even experienced Chinese doctor/acupuncturists admit that acupuncture is very much a hit and miss method as regards effectiveness in controlling neuropathic symptoms. Nevertheless, many people have found relief from acupuncture sessions. Today's enlightening post from Natural News.com (see link below) explains how Chinese medicine sees neuropathy and its potential treatment with acupuncture.
Although not normally done on this blog; the footnotes and references are added at the end to show that the article is based on research and not just alternative theory.
Neuropathy, or Peripheral Neuropathy, is defined as having numbness, tingling or pain in nerves apart from the spine or brain, often in the hands and feet (1). It is a fairly common symptom, occurring in people with spinal injuries, diabetes, and genetic conditions such as Charcot-Marie-Tooth Syndrome (2,3). Acupuncture can be an effective way to treat these symptoms, bringing energy, life and feeling back into the extremities.
Neuropathy is a serious symptom, which often affects people`s quality of life. When people don`t feel parts of their bodies, they are more prone to injury and infection, as well as finding difficulty in daily tasks such as walking, fine motor work, or gripping. People who have this symptom as part of a genetic disorder also deal with the fears and hopes that go along with having a rare medical disorder(4).
Acupuncture is a powerful tool not only to balance qi - or energy - in the body, but to bring peace, hope and alignment into the mind, emotions and spirit as well.
When there is numbness in the periphery, there is not enough qi reaching these areas, according to traditional Chinese medicine. This can be for a variety of reasons, but mainly either:
1) there is too little energy in that organ system/meridian (energy pathway)
2) something is blocking the energy from reaching the area.
Sometimes there will be a combination of the two, and often multiple organ systems/meridians are involved. There are also different causes for the condition. Each of these things is considered and addressed by the acupuncturist, and a treatment plan which best suits the patient is mapped out.
In general, treatment would involve selecting points that promote circulation of energy in the meridians. If heat or cold is the cause, treatment would include either dissipating heat or warming coldness.(5)
Sometimes, weakness and flaccidity in the extremities is classified as wei syndrome. According to Traditional Chinese Medicine, this results from malnourishment of the tendons due to depletion of body fluids, caused by "excess heat" remaining in the body after illness.(6) Wei syndrome often requires longer periods of treatment.
Acupuncture often brings immediate relief - especially when there is pain - though it will likely take a series of treatments for the feeling and strength to come back completely and for the body to stay in balance, providing lasting effects. How often or how long treatment should proceed will be individual, depending on the cause and the overall constitution and health of the patient. As mentioned above, Wei syndrome can require a long course of treatment.
Acupuncture works by treating the person as a whole, balancing body, mind and spirit and allowing the body to do what it needs to do to heal itself. Acupuncture helps remove blocks, helps the body focus on increasing energy in areas of deficiency, and helps the patient be more present and focused, but ultimately it is our own bodies and energy that are able to heal.
Footnotes:
1) http://en.wikipedia.org/wiki/Neuropathy
2) http://www.medicinenet.com/peripheral_neuropathy/article.htm#1whatis
3) Charcot-Marie-Tooth Disorders (from CMT Facts III, Special Report, p.24):
- CMT is the most common inherited neuropathy, affecting about 125,000 Americans
- CMT is also known as peroneal muscular atrophy and hereditary motor sensory neuropathy
- does not affect life expectancy
- can vary greatly in severity, even within a family
- is the focus of significant genetic research
4) Flapan, Mark, p.10 of CMTA Special Report.
5) Xinnong, p.444
6) Xinnong, p.443
References:
CMTA Special Report: CMT Facts III. Published by Charcot-Marie-Tooth Association. 2700 Chestnut Parkway. Chester, PA. 19013.
Flapan, Mark. Living With A Rare Disorder: Hope and Fear. CMTA Special Report: CMT Facts III. Published by the Charcot-Marie-Tooth Association.
Maciocia, Giovanni. The Foundations of Chinese Medicine: A Comprehensive Text for Acupuncturists and Herbalists. Second Edition. Churchill Livingstone. 2005.
Xinnong, Cheng. Chinese Acupuncture and Moxibustion. Foreign Languages Press. Beijing. 1990.
Although there are several other posts about marijuana use for neuropathy here on the blog, today's interesting post from Neurology Today (see link below), looks objectively at the arguments for and against.
Whenever Marijuana or Cannabis appear in the titles of posts here, the visitor figures rise. Whether that's because of the controversy surrounding marijuana, or because people really want to know if it works in controlling neuropathic pain I don't know but it's an issue that always excites people's interest. In the Netherlands we like to chuckle at those puritanical Americans (and others) who see marijuana as the epitome of everything evil and the beginning of the slippery slope to hard drug use but in fact, believing that marijuana is completely harmless, is possibly equally misguided. In the case of people with HIV and neuropathy who want to use it to relieve their pain, it's hard to justify the political restrictions but at the same time, THC (the chemical component of the drug) needs to be proved to help and not to hinder.
The idea of getting high to control your pain may seem attractive but not everyone likes to get high. Many people like to feel in complete control of what they're doing and getting stoned by definition, means relinquishing some control. On the other hand, you may reject the various anti-depressants that are officially approved because of their mind-altering side effects and yet feel that marijuana can only be good for you, thus creating contradictions all round. Evidence based research is therefore essential, for all our benefits and if THC is proved to be effective for many people (and that certainly seems to be the case) then maybe they can refine it so that smoking cannabis is not the only option.
As Another State Approves Medical Marijuana, Neurologists Urge Caution About Prescribing FALLIK, DAWN Neurology Today: 18 February 2010
ARTICLE IN BRIEF
Neurologists point out the dearth of evidence-based research to support medical marijuana for neurological conditions, but some offer anecdotal reports that show it helps manage certain symptoms.
Last month, New Jersey became the 14th state to approve the use of medical marijuana for specific diseases, including multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS).
But some neurologists practicing in already approved states said that while a chemical in the plant may help some patients, more research is needed on how it affects symptoms and causes. And they cautioned doctors to set boundaries within their own practice to prevent the “free-for-all” storefronts in place in California, which they say has become too lax in its standards.
“How do you separate wishful thinking versus clinical data?” asked Denis Petro, MD, a neurologist in Pennsylvania who has been openly supportive of medical marijuana laws and helped found Patients Out of Time, a patient advocacy group.
Dr. Petro, who testified in support of the law in New Jersey, said that while some patients would benefit from using marijuana, particularly for neuropathic pain, the drug is not appropriate across the board for symptom management and disease modification.
The FDA has not approved botanical marijuana for medical use in the US, but it has approved two drugs in capsule form for therapeutic uses — dronabinol (Marinol) and nabilone (Cesamet). Both contain synthetic delta-9-tetrahydrocannabinol (THC), the active ingredient in botanical marijuana. The FDA approved dronabinol in 1985 and nabilone in 2006 for nausea and vomiting in chemotherapy patients who had failed to respond to conventional antiemetic treatments. In 1992, dronabinol was approved for anorexia associated with weight loss in AIDS patients.
RESEARCH CHALLENGES
In March 1999, a report by the Institute of Medicine, “Marijuana and Medicine: Assessing the Science Base,” called for evidence-based research into the effects of marijuana and its cannabinoid components, for specific diseases, concluding that “if there is any future of marijuana as a medicine, it lies in its isolated components, the cannabinoids and their synthetic derivatives.”
In May 1999, the Department of Health and Human Services (HHS) released guidelines specific to conducting research on marijuana. Among procedures, the HHS established that investigators had to first make an inquiry to the National Institute on Drug Abuse (NIDA) to determine the availability and costs of marijuana, and the NIDA had to determine that marijuana is available to support the study; researchers had to file an Investigational New Drug application through the FDA, and investigators had to register with the federal Drug Enforcement Agency to conduct research using a Schedule I controlled substance. (Under the Controlled Substances Act, Schedule 1 substances are defined as having a very high potential for abuse, having no accepted medical use in the US, and lacking accepted safety data for use under medical supervision.)
“A few years ago, to do research on this was almost like asking for trouble; everyone assumed that if you did research on cannabinoids that meant you agreed with it,” said Joseph I. Sirven, MD, chair and professor of neurology at the Mayo Clinic in Scottsdale, AZ. In a 2004 paper in Neurology, Dr. Sirven reviewed studies regarding the efficacy of marijuana for the management of epilepsy and MS; he found limited scientific evidence regarding its use.
“Now the doors have opened, so we can at least ask the questions without fear of reprisal. But we're just in the infancy stages as far as research,” he said.
THE UNDERLYING MECHANISM
Cannabinoids affect neurological function through THC, which binds to cannabinoid receptors and triggers a cellular response. There are two kinds of cannabinoid receptors: CB1 receptors are mainly found in the brain, and CB2 receptors are located in the immune system and peripheral nerves throughout the body.
The body produces its own internal “endocannabinoids,” which appear to function primarily in helping the body maintain homeostasis. Via specific receptor binding, cannabinoids inhibit the release of potentially toxic, excitatory neurotransmitters, such as glutamate, thus protecting the nervous system from overstimulation. Cannabinoids are also strong antioxidants and reduce CNS inflammation by removing free radicals, which are damaging, electrically charged oxygen species.
The main advantage of using marijuana over other drugs such as opiates for pain management is its side effect profile, doctors said. There is little chance of an overdose with marijuana and it does not cause constipation, which can cause problems in those with neuromuscular diseases.
PERSPECTIVES ON CLINICAL USE
Doctors in states that have medical marijuana laws varied greatly on how they incorporated the drug in their practice. Some said they would rather use other medications and rarely mentioned cannabis to their patients because they were skeptical of its success. Others said their patients had had success with the drug, and that the public perception of how it was used was skewed.
Gregory T. Carter, MD, a professor of rehabilitation medicine who co-directs the ALS clinic at the University of Washington in Seattle, has been recommending medical marijuana under state law for a decade. His patients, a majority of whom are older and never used marijuana recreationally, either eat the drug or use it in a vaporizer, inhaling the mist three times, two to three times daily.
Dr. Carter is the senior author of a 2004 paper in the American Journal of Hospice and Palliative Medicine that included results of an anonymous survey about marijuana use among ALS patients; 13 of 131 respondents reported using cannabis in the previous 12 months. Although the small number of people with ALS that reported using cannabis limits the interpretation of the survey findings, the study authors suggested that the results indicated that cannabis may be moderately effective for reducing symptoms of appetite loss, depression, pain, spasticity, and drooling. Cannabis was reported to be ineffective for reducing difficulties with speech and swallowing, and sexual dysfunction. The longest relief was reported for depression (approximately two to three hours).
Dr. Carter pointed to several studies in which cannabanoids provided neuroprotective benefit, including a 2004 study by the Forbes ALS Research Center in San Francisco, published in the journal Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. The investigators reported that treatment with THC was “extremely effective” at reducing oxidative damage in spinal cord cultures and delayed motor impairment in ALS mouse models.
“For patients, it works really well to treat the symptoms of ALS,” he said. “It dries the mouth out, eases pain and spasticity, elevates mood, and improves appetite. It replaces four or five other medications.”
In his June 2009 literature review in the Journal of Opioid Management, Dr. Carter found only 33 American controlled clinical trials on the safety and therapeutic use of cannabinoids since 1998 for a variety of medical conditions.
The dearth and size of published studies, as well as the lack of long-term studies, makes Mark Spitz, MD, hesitant about recommending medical marijuana. The professor of neurology and director of the comprehensive epilepsy program at the University of Colorado-Denver in Aurora said maybe a couple dozen of his 2,000 patients use the legally approved marijuana.
“They don't like getting high,” he said. “Patients wouldn't take it in the morning or during the day because they feel like it impairs their thinking and concentration. They would only take it before bed.”
Those who do use marijuana tell him that it helps the frequency and the duration of their seizures, Dr. Spitz said. When they can't get it for financial reasons, they say they feel worse, he added.
Dr. Spitz said much of the current research was indirect. He cited, for example, a 1990 study in the American Journal of Epidemiology that found that among risk factors for illicit drug use and first onset seizure, marijuana use was shown to be protective factor, while regular alcohol use was a risk factor.
“It's not a substitute for western medicine,” he said. “I have been working with regular seizure medications as the first line of therapy.”
Although Colorado approved the use of medical marijuana in 2000, Dr. Spitz said patients initially had a hard time finding it. The original state law allowed growers and dispensers to each supply only five patients. In 2007, the law was changed, however, and now storefront operations are in many locations across the state, as ubiquitous as Starbucks.
It's a scene that's popular in California, which passed the first medical marijuana use law in 1996. Unlike New Jersey, which strictly limits prescriptions to specific diseases, California's law is broader and more prone to abuse, doctors said. The California law does not restrict medical marijuana for use in specific diseases. Doctors must provide a physician's recommendation for state residents to legally purchase and smoke eight ounces. The business there has expanded to an estimated $14 billion marijuana market, according to an April 2009 story in The Washington Post.
Dr. Sirven, who specializes in epilepsy, said he has not written any prescriptions for medical marijuana, because he isn't sure whether it's effective for his patients. The decision not to prescribe it was made collectively by his practice at Mayo, he said.
But he said that doesn't mean the door is closed, particularly when it comes to pain management and appetite stimulation. “Given the absence of evidence, I feel uncomfortable prescribing it until I have better data,” he said. “My advice to New Jersey would be to advocate for clinical trials because they have the opportunity to help other states decide — is there anything to this or should we just be stopping this?”
Are you having a laugh! That may be the first thought that comes to mind when considering hypnotism as a potential aid to controlling nerve pain. However, if you think about it, it is in many ways the ideal treatment because it's a drug-free means of tackling the pain at source and while nobody would pretend that hypnotism can cure neuropathy; many people might be prepared to wonder if under hypnosis, the brain can't be trained to feel less pain, or at least give it less importance in your conscious state. Maybe hypnosis can help us manage the pain better. This article comes from altmd.com(see link below) which is a site concentrating on alternative treatments for many ailments. One thing seems clear in the article; the more you believe, the more speedy and effective it will be. So all you sceptics and cynics out there (you know who you are...about 90% of all people with HIV and neuropathy!) will need to take a deep breath and learn to have an open mind. It may not work but then again it just may. After all, apart from the cost of the hypnotherapy, what have you got to lose?
It goes without saying that your choice of hypnotherapist needs to have qualifications and diplomas coming out of his or her ears, because the last thing we all need is to have our hopes dashed by a quack after a quick buck!
Hypnotherapy for Neuropathy
When the body’s nervous system breaks down or becomes diseased, neuropathy can result. Patients experience pain, tingling and numbness, severe burning sensations or electric-like shooting pain. In extreme cases, their organs break down and paralysis can occur.
Conventional medical treatment of neuropathy, such as medication management, nerve blocks or nerve ablation, is only partially successful in significantly decreasing the perception of pain. This leads to significant life disruption, impairment, or even disability. Numerous agencies recommend therapeutic or medical hypnotherapy for controlling the pain of neuropathy. Hypnotherapy can help patients cope with the unremitting pain created by neuropathy by redirecting the client’s attention away from the pain and encouraging relaxation to lessen the perception of pain. The meditative exercise decreases sensations of discomfort or pain to a tolerable, or even an imperceptible level. Studies have demonstrated that many people with moderate to severe pain are able to achieve total relief while under hypnosis, and the relief can continue after coming out of hypnosis. It often takes one to three sessions with a trained hypnotherapist to achieve this effect, and follow-up sessions are rarely needed.
How Hypnotherapy Works for Pain from Neuropathy
Hypnotherapy enables patients to alter their mental experiences of pain, resulting in significant reductions in the experience of pain and the need for pain-reducing medication. During a session, for example, a hypnotherapist might tell a neuropathy patient that he or she can lower the experience of pain in a way similar to turning down the volume of a television set using a remote control. Patients begin to experience more control over their lives and are able to deal with the constant experience of pain.
While hypnotherapy might not cure the actual cause of neuropathy, it can help the patient manage the experience of pain. Even though scientists do not yet know how hypnosis works, there are some possible explanations for its effectiveness. The patient’s brain might respond to a hypnotherapy session by recognizing that even though the pain exists, there is no need to actually respond to the feeling of pain. Secondly, hypnosis might only be redirecting the client’s attention away from the pain. A third possibility is that hypnotherapy helps the body reduce the total amount of pain reception that gets relayed to the brain. Brain scans indicate that hypnosis actually creates a physical change within the brain possibly explaining its effectiveness for neuropathy.
What Happens During Clinical Hypnotherapy?
Unlike old movies that show hypnotists making their subjects do strange activities they consciously would avoid, the hypnotherapy patient remains in control of his or her responses to the treatment suggestions. During the first session with a properly trained clinical hypnotherapist, the process of hypnosis will be explained. Then, the hypnotherapist will provide a progression of relaxation exercises to assist the patient with moving into a deeply relaxed state of awareness. The patient’s brain will move into a different wavelength pattern, and the heart rate and blood pressure will drop. Entering into a deep, trance-like state of awareness will open the mind to suggestions for pain management. The hypnotherapist will offer ideas to minimize neuropathy symptoms by helping the client alter his or her experience of pain and associated thoughts and behaviors. Then, the patient is brought back to normal waking consciousness, and the experience is discussed. Sessions usually last about an hour and most people begin to feel improvements after three or more sessions. The more highly motivated the patient, the better the response is to hypnotherapy. Preteen children tend to respond after only one or two visits because they are easily hypnotized. About one in ten patients do not respond to clinical hypnosis.
What Is Neuropathy?
Neuropathy involves pain initiated by a primary dysfunction or lesion in the nervous system. In chronic forms, symptoms develop slowly. Some people experience periods of pain followed by times of relief. Others may experience the same level of symptoms for months or even years. Some chronic neuropathies worsen over time, but few are fatal by themselves. In acute neuropathies, symptoms appear suddenly, progress rapidly, and resolve slowly as damaged nerves heal.
In peripheral neuropathy, damage is done to the portion of the nervous system that transmits information from the brain and spinal cord to all other parts of the body. These can be caused by cancer-related issues, compression or entrapment of nerves (such as carpal tunnel syndrome), complications from diabetes, drug-induced and toxic damage, gastrointestinal and nutrition-related damage, hereditary issues, and immune-mediated dysfunctions. More than 100 types of peripheral neuropathy have been identified. For some people, symptoms manifest as organ or gland dysfunction, burning pain (especially at night), paralysis, or muscle wasting. Others may suffer from temporary sensitivity to touch and muscle weakness, along with tingling, numbness, and prickling sensations.
At least 20 million people in the United States have peripheral neuropathy, and nearly 60% of all people with diabetes have the disease. Peripheral neuropathy affects motor nerves (responsible for voluntary movement), sensory nerves (responsible for sensing temperature, pain, touch, and limb positioning), and autonomic nerves (responsible for involuntary functions such as breathing, blood pressure, sexual function, and digestion).
Finding a Hypnotherapist
The hypnotic state is generally safe. However, people who struggle with their grip on reality may not benefit. Also, those who are hiding something traumatic from themselves may feel agitated after hypnosis. Therefore, it is important to select a licensed clinical hypnotherapist who is trained in both medicine and psychology.
Today's article from an unknown author writing for opioids.co.uk (see link below)is not an easy read but one that definitely stimulates discussion. The writer is clearly someone with a deep scientific knowledge of how opioids work and his or her political agenda aside, he makes a powerful case for a more open-minded approach to using opiods in the treatment of pain. It's not as if it's a new drug source; it's been used for thousands of years but it is a controversial one because of the perceived dangers of addiction and substance abuse. Much like marijuana, the authorities both political and medical, seem to see it always as a potential threat to society, rather than an effective weapon in the fight to control severe pain. Of course, as many of you know, it's already widely used in the treatment of neuropathic symptoms but almost always as a last-resort measure, when all else has failed.
This article tries to show that opioids are not something to be feared but an age old pain suppressor that deserves much better research, so that it may be possible to use it at an earlier stage. After all, the anti-depressants and anti-convulsants which are generally prescribed first, are not without unpleasant side effects of their own and are very often ineffective. However, it's a real hot potato as far as the FDA in the States and most governments across the world are concerned. They seem to have a vision based in the 19th century of half the population living in a drug-induced stupor. Time to trust the people a little more maybe?
FUTURE OPIOIDS
THE BIRTH OF A NEW GENERATION
A significant minority of the population only feel truly well on opioids. In effect, they self-medicate, taking responsibility for their own mental health in defiance of medical orthodoxy.
It would indeed be extraordinary if - alone among the neurotransmitter systems of the brain - the endogenous opioid families were immune from dysfunction. Enkephalins are critical to "basal hedonic tone" i.e. whether we naturally feel happy or sad. Yet the therapeutic implications of a recognition that dysfunctional endogenous opioid systems underlie a spectrum of anxiety-disorders and depression are too radical - at present - for the medical establishment to contemplate. In consequence, the use of opioid-based pharmacotherapies for "psychological" pain is officially taboo. The unique efficacy of opioids in banishing mental distress is neglected. Their unrivalled efficacy in treating "physical" nociceptive pain is grudgingly accepted.
Later this century and beyond, however, the development of highly selective, site-specific designer drugs and innovative gene-therapies may enhance our native opioid function and revolutionise mental health. Therapeutic intervention targeted on the opioid pathways will potentially enrich the quality of life of even the nominally "well", not least because - by the more enlightened health standards of posterity - we may all be reckoned mentally ill.
Today, by contrast, immense energy is devoted by the authorities into persecuting "illicit" narcotic users. Many drug-"abusers" feel well thanks only to the "non-therapeutic" use of opioids. They are stigmatised, pilloried and criminalised in a futile War Against Drugs. In the "Inquisition against pleasure", victims of medically-sanctioned human-rights abuses - e.g. the hundreds of thousands of drug "offenders" incarcerated in the Amerikan gulag - are officially supposed to believe their malaise-ridden drug-naïve states were "normal", "natural" and mentally healthy. In the course of our ill-conceived Drug War, vast resources are dissipated by the state-apparatus in an effort to choke off narcotic production and supply. When these efforts are temporarily successful, drug-deprivation makes the habitual opioid user feel ill; [s]he "cold-turkeys" with characteristic irritability, anhedonia, depression, sickness behaviour and sometimes raw physical pain. The ill-effects felt from involuntary deprivation of opioids are taken to demonstrate the likely ill-effects of legalised access, a paradox that might be thought laboured were its human costs not so tragic.
When caught up in the criminal justice system, users may be pressured into taking opioid antagonists like naltrexone (Trexan). Such drugs can induce dysphoria and suicidal despair. At best, their use subtly diminishes the victim's capacity ever to feel well. Meanwhile Chinese military surgeons have developed (2003) a new treatment weapon against narcotic users: surgical destruction of the pleasure centres. Western doctors are said to be following these procedures with interest, but are more likely to achieve their functional equivalent by non-surgical means.
Even where it is acknowledged that many opioid users have a pre-existing anxiety or depressive disorder in urgent need of relief, those so afflicted are fobbed off with often third-rate psychotropics instead. For a start, the monoamine hypothesis of depression - and the new classes of drug it has spawned (SSRIs, NARIs, SNRIs, NaSSAs, RIMAs etc to complement the dirty old tricyclics and irreversible unselective MAOIs) - is radically incomplete. A minority of people, admittedly, find such drugs effective. Often taking a licensed antidepressant is better than nothing at all - perhaps in part because of their positive effects on endogenous opioid peptide release. Yet even in the context of controlled clinical trials with relatively high dosage-regimens and artificially good rates of patient-compliance, it's rare for response-rates to reach more than 70%. Rates of full remission of depressive symptoms are far lower, perhaps 25-30%. Out "in the field", the picture is worse still. Adverse side-effects are common. Response may take weeks. Withdrawal reactions can be unpleasant.
A recognition of the crucial role of dopamine, and selective dopamine reuptake blockers, in sub-types of depressive mood-disorders might push response and remission rates higher. The mesolimbic dopamine system is critical to vitality, motivation, libido and a capacity to anticipate reward. Dopaminergics can also act as analgesics. They can also reverse the apathetic sedation induced by some antidepressants and opioid agonists. Yet the FDA stymies the licensing of effective dopamine reuptake-blocking mood-brighteners at home; and applies pressure to deny access to them abroad. This is because of worries about their (sometimes) faster efficacy - and mild psychostimulant effect - raise the spectre of "abuse-potential"; and proscription, persecution and indiction are favoured over consumer education. For Big Brother knows best.
More controversially, adding customised opioids, enkephalinase-inhibitors and kappa-antagonists to our therapeutic armamentarium may prove critical to boosting response- and remission-rates towards 100% in the decades ahead. Crudely, whereas dopamine mediates "wanting", mu opioid agonists mediate "liking". Both systems can be fruitfully enhanced. Depressive and dysthymic people often suffer from a dysfunctional opioid system and anhedonia - an incapacity to experience pleasure. Sometimes orthodox "antidepressants" may even make them feel worse. Yet controlled clinical trials of designer narcotics for refractory and/or melancholic depression, let alone their use by "normal" people with "ordinary" mood-disorders, are not imminent.
So what is to be done? Even in the context of today's crude agents, would some of us be better off as legalised junkies?
No, usually not, at least in contemporary society. Self-medicating users with enough resources to maintain a regular supply may indeed find they can function as well as, or better than, their drug-naïve state. Popular mythology aside, users don't seek to escalate dosage indefinitely: both humans and laboratory monkeys with unlimited access tend slowly to increase injection-frequency until eventually they self-administer a stable and subjectively optimal amount of the drug. Most users take heroin, not primarily to stave off the abstinence syndrome, but because they find life on heroin better than their pain-ridden life without it. Yet the existence of a typical heroin addict in prohibitionist society can still be exceedingly unpleasant at times. Contemporary opioid drugs, natural and synthetic alike, are flawed. The problem is not the euphoric well-being they can induce - an ill-named "adverse side-effect" - but their tendency to induce a financially ruinous tolerance; perhaps insidiously to dull the intellect; trigger nausea; slow digestive processes; and sometimes induce a parodoxical hyperalgesia. Most seriously, when taken in acute excess, today's opioids can cause respiratory depression. This is a consequence of their stimulation of the mu-2 receptors in the medullary respiratory centres of the brain. These problems are exacerbated a thousandfold, however, by the illegal status of narcotics in contemporary society. Dosage, purity and regularity of supply cannot be guaranteed; prices are inflated; quality-control is negligible; good hygiene is difficult. Pharmacological education is non-existent, whereas it ought to be part of the core curriculum. Opioid users are frequently forced into crime to pay for pharmacotherapies that should be cheaply and safely available; and damned for seeking a state of mind which will one day be their birthright: invincible happiness.
To promote emotional superhealth both durably and effectively, designer-opioids must be synthesised that are also subjectively nicer, richer and cleaner than today's product-line. For one of our three major endogenous opioid families is implicated in profoundly dysphoric psychological effects: a cruel negative-feedback system exists between the mu and kappa systems that "corrects" any "excess" tendency to well-being. Thus dynorphin activity at the kappa receptors tonically inhibits the release of dopamine from the mesolimbic terminals. By contrast, the mu-opioid receptor selective endomorphins, especially endomorphin 1, are potent antidepressants: they enhance mu opioid receptor-mediated dopamine release in the nucleus accumbens. If our well-being is to be sustainably enhanced, the balance between the two opposing opioid systems must be shifted.
The role of the mu receptors appears to be crucial in another respect. Today, people vary hugely in their sensitivity to pain. This sensitivity is genetically regulated. Pain perception - and, conversely, emotional well-being - is closely linked to the number of neuronal mu receptors. This number is controlled by a single gene, the mu opioid receptor gene. Pain-sensitivity is diminished when the receptors are present in relative abundance. When the receptors are reduced in number or missing altogether, relatively minor noxious stimuli may be perceived as painful.
In the short-to-medium term, then, we need better-targeted opioids, safer and more site-specific than the present crop. Smarter opioids can potentially be combined with cholecystokinin antagonists (e.g. proglumide); nitric oxide (NO) synthase inhibitors; peroxynitrite-blockers; and also, perhaps, better-designed NMDA receptor antagonists - co-analgesics with potential antidepressant efficacy that inhibit the onset of tolerance. Although mu receptor agonists are the best analgesics and euphoriants, selective delta receptor agonists and enkephalinase inhibitors may prove clinically valuable antidepressants. The development of centrally active and more selective kappa antagonists - which block the endogenous excess production and reuptake of dynorphin underlying many depressive and anxiety disorders - is also a priority. Orally active JDTic, a potent, exceedingly long-acting selective kappa antagonist, is currently undergoing preclinical testing. Kappa Therapeutics, the world's first conference dedicated to the kappa opioid receptor, was held in Seattle July 2011. In the meantime, Buprenorphine (Buprenex, Temgesic, Subutex), for instance, is certainly no panacea; but it would probably benefit a far wider section of the population than its current restriction to use in "detoxifying" heroin-addicts. Its role as a mixed mu agonist reduces buprenorphine's addictive potential as a euphoriant while increasing its safety in overdose. Buprenorphine's kappa receptor antagonism may contribute to its superior efficacy as an antidepressant. Even the humble codeine analogue tramadol (Ultram), a selective partial mu agonist analgesic with noradrenaline and serotonin reuptake inhibiting properties, can serve as a useful mood-brightening stopgap. Weak but non-negligible kappa agonism limits its therapeutic benefit. But contemporary medico-legal opiophobia ensures such usage remains strictly off-label.
THE QUEST FOR A DRUG-FREE SOCIETY
In the longer-run, however, irrespective of how clever our pharmacological interventions may one day be, we'd arguably be better off taking no drugs at all. For if there were nothing fundamentally wrong with our default-state of consciousness, then we wouldn't now try so hard to change it. Thus our sophisticated descendants may opt instead to rewrite the vertebrate genome and allow themselves life-long genetically pre-programmed bliss. They may "naturally" be animated by gradients of well-being beyond the bounds of normal human experience as an everyday part of mental health.
Wouldn't lifelong happiness make us stagnate? No. In our genetically-enhanced post-human successors, the functional analogues of aversive experience can potentially perform an analogous functional role to mental and physical pain in our Darwinian past, but without its textures of phenomenal nastiness. Our descendants' enriched dopamine function will enhance their drive, energy and will-power, not just hedonic capacity. Thus outright abolitionism is not technically infeasible - just ideologically problematic.
Tomorrow's bioscientists face another challenge. Taken in excess, opioid-based drugs of today tend to dull consciousness, inducing a dreamy warm contentment. The name "narcotic" derives from the Greek word for stupor. Indeed smacked-out bliss is typically used as the archetype of what any drug-or-gene-underwritten chemical utopia would be like. Most notably, soma in Aldous Huxley's Brave New World is depicted as a cross between a non-addictive opioid and a hangover-less tranquilliser. Thus Huxley's utopians enjoy only an empty imbecilic happiness, not life-enriching peak experiences. Unlike dopaminergics, soma doesn't increase incentive-motivation, nor does it heighten the felt intensity of experience. You can use soma to drift off to sleep.
Yet this negative stereotype of synthetic bliss is profoundly misleading. Addictive tranquillity is only one option among many. It reflects a poverty in our conception of the range of options for paradise-engineering that biotechnology puts on offer. In reality, the quality of our consciousness can be intensified, sharpened and radically diversified by creative psychopharmacology. Intellect and empathy, and not just mood, can be prodigiously enhanced when the ideology of Better Living Through Chemistry finally enters mainstream culture.
Better still, when a wholesale genomic rewrite - and not just piecemeal genetic tinkering - unfolds in the millennium ahead, then any chemical manipulation of our descendants' emotionally- and intellectually-enriched superminds may be redundant. At most, lifestyle drugs will offer an optional fine-tuning for the parameters of their well-being - set against a backdrop of native-born bliss. In the wake of any such Post-Darwinian Transition, a wide variety of social interactions will "naturally" trigger a far richer endogenous opioid release than occurs today; and do so from a much higher baseline of emotional well-being.
However, our present restrictive definitions of mental illness, and the technical challenges posed by large-scale genetic-rewrites, make germline gene-therapy seem a pipe-dream for now. In the present era, lifetime pure dysthymia afflicts far too many people; and periods of "mild" anxiety, malaise and depressive episodes blight the lives of hundreds of millions more. Meanwhile countless victims of chronic pain-disorders are condemned to a life of needless suffering by institutionalized opiophobia. Victims of the most unspeakable, spirit-crushing neuropathic or central pain are liable to be fobbed off with pain-management courses - "helping you to manage your pain" - rather than given the potent pain-relief they deserve. For with a bit of creative psychopharmacology, both the tolerance and adverse side-effects of chronic opioid use are manageable even with today's crude agents. Thanks to tomorrow's biotechnology, the real obstacles to curing the nasty side of life are set to become doctrinal, not technical. Suffering of any kind is due to become optional. It remains to be seen how quickly the ideological baggage of the past can be overcome.
While you're raising a glass to Christmas, or wishing it were over, or not even celebrating it, like a great deal of the world's population, spare a moment to consider the figures in today's post.
Mark Twain wrote "There are three kinds of lies: lies, damned lies, and statistics" and while the sceptical mind will always look at this statement approvingly, sometimes we just have to face facts, look at undisputed figures and use them. In this case, you can't help but wonder why neuropathy still remains such a vague and 'hidden' disease. Certainly, if you look at the list of diseases at the end and the attention they get compared to the size of population, it confirms that neuropathy is still very much a poor relation, in the nerve disease family, at least as far as the US is concerned. With very few exceptions, there is no current proof that the rest of the world has a more enlightened view, although it has to be said that the discovery of new and effective treatments for all, would certainly raise the profile!
The list comes courtesy of Leslie MacGregor Levine, V.M.D., Ph.D. and stems originally from a Neuropathy Association presentation during their 2010 Conference.
Highlights of Neuropathy Summit Meeting December 3-5, 2010
Leslie MacGregor Levine, V.M.D., Ph.D. Neuropathy Association President Tina Tockarshewsky‘s Presentation
1. The Neuropathy Association: Has 50,000 members, with 135 support groups nationwide
Mission is awareness, education, support, advocacy and research on NP
2. Statistics on Neuropathy
20 million Americans have NP, and 8% of the world’s population has NP
This includes 15-20% of cancer patients, and 10-14% of people over the age of 40
A leading cause of disability due to pain, gait instability, falling and foot ulcers.
$3.5 billion in health care costs.
Most common type is small fiber loss
NP is the most common and costly complication of diabetes.
The numbers of people with NP are increasing as the population ages, diabetes incidence increases, the lifespan becomes longer of HIV+ patients, and increased diagnosis with increased professional awareness
3. Among NP patients, age of onset is
0-20’s – 3%
30’s-40’s - 27%
50’s-60’s - 55%
70’s-80’s - 15%
4. Causes of NP
30-35% Idiopathic – some with undiagnosed pre-diabetes
14-33% Diabetic, most common type II
12-20% Autoimmune, inflammatory and infectious – Guillian-Barre, Sjogren’s, lupus, rheumatoid arthritis; Inflammatory includes chronic inflammatory demyelinating polyneuropathy (CIDP) and multifocal motor NP (MMN);
5% Infectious - leading cause in world is leprosy. Other infectious causes are shingles, hepatitis, HIV and Lyme disease
6-27% Hereditary, such as familial amyloidosis, Charcot-Marie-Tooth disease
4% Chemotherapy-induced
4% Trauma-induced
6% Other, including toxin-induced such as heavy metals, Agent Orange, alcohol, excess B6; paraneoplastic; drug-induced; metabolic like renal and liver disease; nutritional deficiencies (B12 most common)
5. Time between onset of symptoms and diagnosis:
28% less than 1 year
55% 1-5 years
15% 5-15 years
6. 67% get diagnosed by a neurologist, 15% by a primary care physician
7. Many feel that although their family and friends know about their NP, they do not fully understand its impact on their lives
8. There is a huge discrepancy between the numbers of people with NP and the amount of research funding NP gets relative to other diseases, including those affecting far fewer people. People are not very aware of NP, and think it is “not that bad”
Diseases
Multiple Sclerosis % of US population0.9% # NIH grants872 # grants for each 1% of population with this disease969
Parkinson's % of US population1.0% # NIH grants2055 # grants for each 1% of population with this disease2055
Stroke % of US population2.6% # NIH grants3689 # grants for each 1% of population with this disease1496
Alzheimer's % of US population13% # NIH grants3309 # grants for each 1% of population with this disease255
NEUROPATHY % of US population14% # NIH grants141 # grants for each 1% of population with this disease10
Another interesting article from conquerchiari.org (see link below) talks about the long term effect of chronic pain on the brain. Logical really but not something which we normally think of first when considering neuropathy side effects. The fact that long-term HIV-patients are often confronted with brain-aging, related diseases, is a little disconcerting when you realise that consistent neuropathic pain may just be enabling that process a little more. Yet another thing to discuss with your HIV-specialist, especially if you are beginning to notice changes in your own brain behaviour.
Chronic Pain Is Hard On The Brain... --Rick Labuda
Chronic pain prematurely ages the brain. That was the most significant - and disturbing - finding of a group of researchers from Northwestern University. Scientists have known for some time that chronic pain alters neurons in the spine, but Dr. Apkarian, a neuroscience researcher, and his colleagues wanted to know if and how chronic pain effected the structure of the brain.
In order to study this, Dr. Apkarian and his team used MRI's to measure the volume and density of the brains of 26 people with chronic back pain (CBP) and compared them to the brains of 26 healthy volunteers. They published their results in the November 17, 2004 issue of the Journal of Neuroscience.
Each of the 26 members of the pain group had experienced unrelenting pain for more than a year in their lower back. In some, the pain radiated down into the legs, in others it didn't. In addition to the brain MRI's the CBP subjects reported their pain intensity and how long they had been in pain. To aid in the analysis, members of the pain group were also classified as having neuropathic pain - due to nerve damage - or non-neuropathic pain. The 26 volunteers that composed the control group were recruited to match the age and gender makeup of the CBP group as closely as possible.
The researchers used two different techniques to measure the volume of the neocortical gray matter (the part of the brain responsible for most higher order functions) from the MRI's. They found that overall, the subjects in the pain group had 5%-11% less gray matter volume than the control subjects, a statistically significant finding. People normally lose about 0.5% of their gray matter each year as they age, so this result translates to the pain patients experiencing 10-20 years of aging compared to the control group.
In looking at neuropathic versus non-neuropathic pain, the team found that in the neuropathic pain group, the volume loss was related to pain duration. In fact, in the neuropathic group, each year of pain equated to a 0.2% loss in gray matter (1.3cm3). In the non-neuropathic group, pain duration was not related to volume loss.
The neuropathic pain group also fared worse when the team measured the density of the gray matter in specific regions of the brain. In the prefrontal cortex - responsible for high level functions - they found that people in neuropathic pain had gray matter that was 27% less dense than the control group, and people with non-neuropathic pain had gray matter that was 14% less dense. They also found that the thalamus - a region of the brain which relays pain and other sensations - was significantly less dense in the pain group as compared to the control group.
Although this study can not prove it conclusively, the authors believe the results mean that the chronic back pain is causing brain tissue to atrophy in certain areas. If proven to be true, this would mean that chronic pain not only alters the neurons of the spine, but has a structural effect all the way to the brain as well. While it is a significant finding, it is also important to keep in mind that this study looked at chronic back pain specifically and the results may be different for other types of chronic pain.
Still, with millions of people in the US alone suffering from chronic pain, and with neuropathic pain an all too common problem for CM/SM patients, this area of research is definitely worth paying attention to..
Following on from yesterday's post, today's article comes from webmd.com (see link below)and looks at the supposed benefits of Acetyl L-Carnitine, which is frequently suggested as a useful supplement (in combination with Alpha Lipoic Acid) for people with neuropathy. The article is unbiased; says nothing that is not found everywhere else on the net and is very useful when deciding whether to begin supplementing your diet. However, when you read what is claimed for this particular amino acid, you wonder why it's not obligatory for everyone on the planet - who wouldn't love something that could do all this!
The problem is that for neuropathy sufferers at least, it's very hit an miss as to whether it's of any benefit at all. Some people swear by it and others can't see what all the fuss is about. Apart from that, at the recommended doses, you're going to need a second mortgage to pay for it because cheap it ain't!
Many people take reduced doses a) because that's all they can afford and b) with the idea that although they don't notice much difference, some must be better than none. It is to be hoped that that's true and that we're not just wasting our hard-earned cash out of desperation! That said, it is recommended by many neurologists and other specialists, so it's definitely not a quack supplement. It's probably something to be discussed and researched as much as possible before making a financial commitment.
ACETYL - L - CARNITINE
Overview Information
Acetyl-L-carnitine is an amino acid (a building block for proteins) that is naturally produced in the body. It helps the body produce energy.
Acetyl-L-carnitine is used for a variety of mental disorders including Alzheimer's disease, age-related memory loss, late-life depression, thinking problems related to alcoholism, and thinking problems related to Lyme disease. It is also used for Down syndrome, poor circulation in the brain, cataracts, nerve pain due to diabetes, nerve pain due to drugs used in the treatment of AIDS, and facial paralysis.
Some men use acetyl-L-carnitine for infertility, symptoms of “male menopause” (low testosterone levels due to aging), and a disease of the penis called Peyronie’s disease.
The body can convert L-carnitine to acetyl-L-carnitine and vice versa. But, no one knows whether the effects of acetyl-L-carnitine are from the chemical itself, from the L-carnitine it can make, or from some other chemical made along the way. For now, don’t substitute one form of carnitine for another.
How does it work?
Acetyl-L-carnitine helps the body produce energy. It is important for heart and brain function, muscle movement, and many other body processes.
ACETYL-L-CARNITINE Uses & Effectiveness
Possibly Effective for:
Improving memory problems in elderly people.
Improving memory in people who use alcohol excessively. Taking acetyl-L-carnitine seems to improve memory in 30-60 year-old people whose use of alcohol has produced long-term thinking problems.
Reducing nerve pain (neuropathy) caused by diabetes. Acetyl-L-carnitine reduces pain best in people who have not had diabetes for a long time or who have poorly controlled type 2 diabetes.
Treating Peyronie’s disease, a connective tissue disease in men. Acetyl-L-carnitine seems to be more effective than a drug called tamoxifen for reducing pain and slowing worsening of the condition.
Treating male infertility caused by inflammation of some reproductive organs and tissues (prostate, seminal vesicles, and epididymis). Taking acetyl-L-carnitine by mouth, along with L-carnitine for 6 months, seems to increase sperm count and sperm movement. The carnitines are used following 2 months of treatment with non-steroidal anti-inflammatory drugs (NSAIDs), such as aspirin.
Treating symptoms of age-related testosterone deficiency (“male menopause”). Taking acetyl-L-carnitine by mouth along with propionyl-L-carnitine seems to help symptoms related to declining male hormone levels. This combination taken for 6 months seems to improve sexual dysfunction, depression, and fatigue in much the same way the male hormone testosterone does.
Improving blood flow to the brain. Administering a single dose of acetyl-L-carnitine intravenously (by IV) seems to produce short-term improvements in blood flow in the brains of people who have poor blood circulation in the brain.
Treating Alzheimer’s disease. Acetyl-L-carnitine is more likely to help those with early-onset Alzheimer’s disease who are less than 66 years of age and have a faster rate of disease progression and mental decline.
Insufficient Evidence for:
Depression. Some research suggests acetyl-L-carnitine might improve mood and decrease depression in elderly people.
Muscle weakness caused by medications taken for HIV disease. Some research suggests acetyl-L-carnitine might help relieve muscle weakness caused by some HIV treatments.
Down syndrome.
Thinking problems related to Lyme disease.
Cataracts.
Other conditions.
More evidence is needed to rate the effectiveness of acetyl-L-carnitine for these uses.
ACETYL-L-CARNITINE Side Effects & Safety
Acetyl-L-carnitine is LIKELY SAFE for most adults. It can cause some side effects including stomach upset, nausea, vomiting, and restlessness. It can cause a "fishy" odor of the urine, breath, and sweat.
Special Precautions & Warnings:
Pregnancy and breast-feeding: Not enough is known about the use of acetyl-L-carnitine during pregnancy and breast-feeding. Stay on the safe side and avoid use.
Under-active thyroid (hypothyroidism): There is some concern that acetyl-L-carnitine might interfere with thyroid hormone. Don’t use acetyl-L-carnitine if you have an under-active thyroid.
Seizures: An increase in the number or seriousness of seizures has been reported in people with a history of seizures who have used L-carnitine by mouth or by IV (intravenously). Since L-carnitine is related to acetyl-L-carnitine, there is a concern that this might also occur with acetyl-L-carnitine. If you have ever had a seizure, don’t take acetyl-L-carnitine.
ACETYL-L-CARNITINE Interactions
Major Interaction Do not take this combination
Acenocoumarol (Sintrom) interacts with ACETYL-L-CARNITINE
Acenocoumarol (Sintrom) is used to slow blood clotting. Acetyl-L-carnitine might increase the effectiveness of acenocoumarol (Sintrom). Increasing the effectiveness of acenocoumarol (Sintrom) might slow blood clotting too much. The dose of your acenocoumarol (Sintrom) might need to be changed.
Moderate Interaction Be cautious with this combination
Warfarin (Coumadin) interacts with ACETYL-L-CARNITINE
Warfarin (Coumadin) is used to slow blood clotting. Acetyl-L-carnitine might increase the effects of warfarin (Coumadin) and increase the chances of bruising and bleeding. Be sure to have your blood checked regularly. The dose of your warfarin (Coumadin) might need to be changed.
ACETYL-L-CARNITINE Dosing
The following doses have been studied in scientific research:
BY MOUTH:
For Alzheimer’s disease: 1500-4000 mg daily, usually divided into two or three doses during the day.
For peripheral neuropathy: 1500 to 3000 mg per day in divided doses.
In age-related memory loss: 1500-2000 mg daily.
For depression in the elderly: 1500-3000 mg daily in divided doses.
For male infertility:
1 gram of acetyl-L-carnitine plus 2 grams of L-carnitine daily.
4000 mg daily has been used to improve sperm function.
For male infertility secondary to abacterial prostatovesiculoepididymitis: acetyl-L-carnitine 500 mg plus carnitine 1 gram every 12 hours has been used following 2 months of treatment with nonsteroidal anti-inflammatory drugs.
For Peyronie’s disease: 1 gram twice daily for 3 months.
For symptoms of age-related testosterone deficiency: 2 grams of acetyl-L-carnitine plus 2 grams of propionyl-L-carnitine daily.
The two most commonly advised supplements (along with vitamin B-12) to help with neuropathy, are Acetyl L-Carnitine and the subject of today's post: Alpha Lipoic Acid. This helpful article from naturalnews.com (see link below) goes into detail as to the antioxidant qualities of Alpha Lipoic Acid and gives good advice regarding dosage and whether you should buy synthetic or the 'real' product.
Two things worth mentioning are; that although most neurologists and doctors have seen beneficial results with ALA and have little hesitation in approving patient use (especially in combination with Acetyl L-Carnitine) these supplements are rarely covered by insurance policies and are invariably expensive to buy, (especially in the doses generally recommended as being useful), without any guarantee of results. Problem is, the price is driven up by the fact that it's widely sold in sports supplement shops and is also claimed to be an anti-aging aid (hmm!!). Many people turn to supplements when the standard treatment doesn't work as well as hoped but in these financially difficult times it's definitely not an easy choice.
Alpha Lipoic Acid: The Multi-Tasking Supplement Tuesday, December 23, 2008 by: Teya Skae M.A. ATMS
If there is one highly competent, yet underrated supplement, it would have to be Alpha Lipoic Acid (ALA). ALA is not to be confused with the alpha-linolenic acid (also called ALA) found in flax, canola oil and walnuts. Lipoic acid, or thioctic acid is slowly being recognized for its ability to assist the body in a number of significant energy production and physiological functions. For this reason it deserves the title of a multi-tasking supplement.
Let's have a look at why…
Lipoic acid is an antioxidant that is naturally produced in the body; hence, it is often called a metabolic antioxidant. First discovered in the 1930's, it was not until the 1950's that researchers began to take an interest in lipoic acid as a serious supplement. As a result of these studies, lipoic acid was labeled a 'universal' antioxidant. Why? Because it helps to recycle other important antioxidants such as, vitamin C and E, in the body. Remember, antioxidants are the good guys that assist the body from oxidizing too much and too quickly, due to over production of free radicals – a very common physiological phenomena that results from stress, metabolic wastes and physical exercise. As we know, too much free radical damage causes inflammation, heart disease and premature aging. The only way to halt this process is to ensure the body has plenty of bioavailable antioxidants to counteract the free radical damage.
What is so special about Lipoic Acid?
Unlike other antioxidants which are either fat soluble or water soluble, lipoic acid simultaneously acts as both a fat and a water-soluble antioxidant in the body. This allows it to be easily absorbed and transported across cell membranes. This unique quality of lipoic acid offers protection against free radicals both inside and outside the cell, whereas other antioxidants only provide protection outside the cells and not inside, where a lot of action takes place.
In addition to being a powerful antioxidant, alpha lipoic acid helps the body use glucose; hence, it is useful in lowering blood sugar levels and in the management of diabetes.
Diabetes Mellitus is a degenerative condition associated with abnormally high levels of sugar in the blood. Glucose (sugar) builds up in the bloodstream as a result of the body's inability to produce insulin (which regulates blood/sugar levels) or the inability of insulin in the body to control sugar levels.
This is where lipoic acid is of benefit, as studies have shown that lipoic acid speeds the removal of glucose (sugar) from the blood in people with diabetes.
Lipoic acid functions as a co-factor for a number of important enzymes responsible for the conversion of our food to energy, known as Adenosine tri-phosphate (ATP). ATP is required to provide energy for cellular function and is the energy source our muscles use for short bursts of power.
Over the past few years, the pace of research into lipoic acid has increased dramatically. In 1995, Lester Packer, PhD, a professor of molecular biology at the University of California, Berkeley, published a lengthy review article on alpha-lipoic acid in Free Radical Biology & Medicine (1995;19:227-50). In April 1996, he presented a short review of it in the same journal (FRBM;20:625-6).
According to Professor Packer, lipoic acid "could have far-reaching consequences in the search for prevention and therapy of chronic degenerative conditions".
Several studies suggest that treatment with lipoic acid may help reduce pain, burning, itching, tingling, and numbness in people who have nerve damage (called peripheral neuropathy) caused by diabetes. Lipoic acid has been used for years for this purpose in Europe.
The fact that lipoic acid has a beneficial impact on diabetic neuropathy is also supported by other leading doctors in this field such as Dr. Ira D. Goldfine, director, Division of Diabetes & Endocrine Research, Mount Zion Medical Center, University of California San Francisco. However, the current oral formulations of lipoic acid are not of therapeutic value, and typically remain in the blood only a very short time, requiring either multiple daily doses or intravenous infusions. While more clinical studies are needed with controlled-release oral formulations of alpha-lipoic acid, it is already evident that such preparations should be very helpful for diabetics suffering from neuropathy.
For well over 30 years physicians in Germany have been clinically treating diabetics with lipoic acid and in Germany to date, alpha-lipoic acid is an approved medical treatment for peripheral neuropathy, a common complication of diabetes. This is due to the fact that lipoic acid speeds the removal of glucose from the bloodstream, at least partly by enhancing insulin function, and it reduces insulin resistance, an underpinning of many cases of coronary heart disease and obesity. However, we need to note that the therapeutic dose for lipoic acid is 600 mg/day. In the United States, it is sold as a dietary supplement, usually as 50 mg tablets. In Australia it is usually 100mg as either S-Alpha Lipoic Acid, a synthetic, or R-S Alpha Lipoic Acid, a mixture of real and synthetic. Definitely not the therapeutic dose needed to provide the results that the German physicians are accustomed to working with.
How to get the best sources?
Even though our bodies are capable of manufacturing lipoic acid, we still need to get additional supply from our diet or from supplements. In nature, the richest food source of alpha-lipoic acid is red meat, other sources include, spinach, broccoli, yeast (particularly Brewer's yeast), and certain organ meats (such as kidney and heart).
The two types of Alpha Lipoic acid
Not all lipoic acid supplements are the same; this is the sad bit about this wonderful antioxidant. Most of the Lipoic Acid on the market in Australia is not pure lipoic acid, known as R- Alpha Lipoic Acid. There is a pure R form of lipoic acid on the market but, it is a practitioner product and, you would need to ask for it specifically, otherwise we are wasting our money on the S form of lipoic acid, (S-Alpha Lipoic Acid), which is synthetic. A number of health supplement companies make a mixture of real and synthetic lipoic acid displayed on the label as R,S – Alpha Lipoic Acid. This means that you are buying both the natural and the synthetic form of lipoic in one. The only drawback is that you would not know how much of the R or S is in the formula.
As consumers, we have a lot of power in relation to the formulations of the supplements. All it takes is for us to be wiser and more selective. As supply and demand still dictates quality and quantity, if we only choose to use the R form lipoic acid, companies will inevitably succumb to this demand, in order to ensure their sales stay up and not down. When it comes to our health and supplements we deserve the highest and best quality and standards in supplements, otherwise there is no point in taking these supplements as we are not getting what we need!
The other advantage of taking the R form only is that we would use a smaller dose; 50 mg of R-Lipoic Acid is equivalent to 100 mg of synthetic lipoic acid. A further advantage is that the body assimilates the R form much more readily than the S form.
There is a clear advantage in adding the multi-tasking lipoic acid supplement to our health regime; first, it recycles other antioxidants, the good guys who halt premature ageing as well as degenerative conditions and, secondly, lipoic acid improves blood sugar levels in our blood and energy production in our muscles However, the wonderful advantages from lipoic come only from the R-form. Even if our diet is high in red meat and spinach taking a little extra lipoic acid would prove beneficial for anyone who is active, lives a full life, likes occasional sweets and even if they do not have blood sugar irregularities, having an antioxidant recycling facility in our bodies would be a good start towards wellness and longevity.
