Snail Saliva As Effective as Morphine for Neuropathy?

Following on from recent posts looking at unusual potential sources of pain relief, today's post from (see link below) examines the promising properties of a sort of sea snail saliva. It could possible rival morphine in its pain-killing properties and anything that could be a non-addictive substitute for morphine must be welcome in the neuropathy community. Don't expect it to appear soon on the list of approved drugs. They've managed to develop a synthetic version but that has to be injected into the spine and nobody's waiting for that sort of treatment. Still a long way to go then but it's great that people are seriously searching the natural world for alternatives to morphine.

Snail Saliva As Effective as Morphine?
By Deborah Mitchell on July 28, 2010

To treat severe pain, a sea snail may hold an answer. Scientists have developed a new medication first isolated from sea snail saliva that may be as effective as morphine.

Sea snails may not move fast, but what they lack in speed, they more than make up for in chemicals. These animals have the ability to inject a mixture of toxins called conotoxins into their targeted prey using their needle-like teeth.

These conotoxins consist of peptides that can relieve severe neuropathic pain as effectively as morphine, but it does not lead to addiction. Attempts to transform these conotoxins into a drug that could be used as a pain reliever has been challenging. Thus far a synthetic version has been developed, but it must be injected directly into the spinal cord using an implanted pump.

Now, a team of scientists in Australia have developed a conotoxin that can be taken orally. In tests with rats, the new drug proved to be as effective a pain killer as gabapentin, which is the most popular drug to treat neuropathic pain. Compared with the dose of gabapentin needed to treat pain, however, the conotoxin-based peptide (named Prialt) is less than 1 percent.

The research team, led by David J. Craik of the Institute for Molecular Bioscience at the University of Queensland, noted that peptides have generally been regarded to be poor pain killers because they are not stable and mostly not available in oral form. One exception has been the immunosuppressant cyclosporine.

Could a drug based on sea snail saliva be next? Jon-Paul Bignham, a professor of molecular biosciences and bioengineering at the University of Hawaii, Manoa, pointed out that an oral drug that has the pain killer abilities of Prialt “would absolutely revolutionize how we manage chronic and terminal pain.” Move over, morphine.

Chemical & Engineering News 2010 July 26; 88(30): 39-40

Magnetic Therapy: an option for Neuropathy?

Today's short post from Discovery: fit&health (see link below) reinforces the need for people with neuropathic pain to consider carefully, if a treatment is going to help or not. Many clinics offer therapies and treatments involving magnets and make extravagent claims as to their success rate. These can be expensive and may well work for some but many medical experts would disagree. The conclusion of this article is that more research is needed but in the meantime, you need to get advice from your own doctors before parting with your hard-earned cash.

Magnet Therapy and Diabetic Neuropathy

Magnets have used for centuries in China, India, and Egypt for their alleged healing powers. In the late 1800s, American advertisements offered magnetic belts and insoles as a cure for sleeplessness, hysteria, and indigestion. Such claims continue today, yet exactly how or if they work remains unknown.

One theory suggests that magnets can work with the body's own magnetism, similar to a magnetic resonance imaging (MRI) procedure. An MRI scanner creates a strong magnetic field, which causes the atoms within body tissues to shift. Based on that premise, it would seem possible for therapeutic magnets to heal damaged nerves.

Some researchers believe the magnets increase blood flow, "nourishing" a painful area, helping it heal, while others say magnets "repolarize" nerve impulses, changing the perception of pain.

Whatever the reason, magnetic insoles, mattress pads, pillows, bracelets, Belts, and even hairbrushes are a $5 billion industry worldwide, thanks to consumers who swear by them as a safe, noninvasive therapy for all types of chronic pain from tendonitis to migraine headaches.

Mainstream medicine, however, isn't buying it. For every study that shows the potential benefits of using magnets, it seems there's another that shows none at all. One of the more compelling studies appeared in the American Journal of Pain Management in January 1999. In it, Dr. Michael Weintraub, a neurologist at New York Medical College in Valhalla, N.Y., studied the effects of magnets on diabetic and nondiabetic patients with chronic foot pain.

His results showed 90 percent of the diabetics found magnetic footpad insoles significantly reduced chronic foot pain. While the numbers look impressive, critics say the study was too small to mean much. Meanwhile, another study done at the Veterans Affairs Hospital in Prescott, Ariz., published in the March 2000 Journal of the American Medical Association, found that adults with long-term back pain got absolutely no significant pain reduction from magnet therapy.

Despite the controversy, most experts agree the therapy warrants more research. In fact, the National Center for Complementary and Alternative Medicine at the National Institutes of Health believes the potential of magnetic healing worthwhile enough that it funded two ongoing studies on magnets and pain.

Basco Finally Bit the Dust

Finally the biggest SOB of Gokaiger has now bit the dust.  One has to admit that he's the worst nuisance villain ever.

Last we remembered Basco took over the Gokai Galleon and he was almost unstoppable.

However the Gokaigers managed to get even AT LAST.

It's an intense battle between former comrades.  After a dramatic battle...

Basco finally meets his end.  Oh boy, finally he's down!  Well he got what he deserved.  He seems to be at the same level with Radiguet, Long and Abrella.  There goes my favorite Gokaiger villain!

Also there was a cameo from these guys...

Well too bad Red Mask didn't make a cameo.  Oh Sho Hayate gained weight that I could barely recognize him but it was nice for them to make a cameo.  But I was disappointed they dint' have an extended role.  :-(

What the?  Triforce of Wisdom?  Zelda?  Just kidding.  Looks like the finale is just around the corner.  Can't wait to see how it'll end.

Strawberries for Neuropathic Problems!

Okay, today's post from (see link below) may seem a little wacky but we're not really talking strawberries here. The key word is flavonoids and one particular flavonoid called, fisetin. This element has been shown to have a positive effect on nerve cells in studies on mice. A very interesting point at the end though, is that the drug companies are not going to rush into production because they can't easily protect patents on natural products... money talks again! In the meantime, more than 37 strawberries and plenty of blueberries a day can only help (hopefully, the digestive system will cope!)

Flavonoids could represent 2-fisted assault on diabetes and nervous system disorders
Published: Monday, June 27, 2011 - 22:33 in Health & Medicine

A recent study from scientists at the Salk Institute for Biological Studies suggests that a strawberry a day (or more accurately, 37 of them) could keep not just one doctor away, but an entire fleet of them, including the neurologist, the endocrinologist, and maybe even the oncologist. Investigations conducted in the Salk Institute's Cellular Neurobiology Laboratory (CNL) will appear in the June 27, 2011, issue of PLoS ONE. The report explains that fisetin, a naturally-occurring flavonoid found most abundantly in strawberries and to a lesser extent in other fruits and vegetables, lessens complications of diabetes. Previously, the lab showed that fisetin promoted survival of neurons grown in culture and enhanced memory in healthy mice. That fisetin can target multiple organs strongly suggests that a single drug could be used to mitigate numerous medical complications.

"This manuscript describes for the first time a drug that prevents both kidney and brain complications in a type 1 diabetes mouse model," says David Schubert, Ph.D., professor and head of the Cellular Neurobiology Laboratory and one of the manuscript's co-authors. "Moreover, it demonstrates the probable molecular basis of how the therapeutic is working."

Pam Maher, Ph.D., a senior staff scientist in the CNL, is the study's corresponding author. Maher initially identified fisetin as a neuroprotective flavonoid ten years ago. "In plants, flavonoids act as sunscreens and protect leaves and fruit from insects," she explains. "As foods they are implicated in the protective effect of the 'Mediterranean Diet.'"

Other celebrity flavonoids include polyphenolic compounds in blueberries and red wine.

Although her group's focus is neurobiology, Maher and colleagues reasoned that, like other flavonoids, fisetin might ameliorate a spectrum of disorders seen in diabetic patients. To test this, they evaluated effects of fisetin supplementation in Akita mice, a very robust model of type 1 diabetes, also called childhood onset diabetes.

Akita mice exhibit increased blood sugar typical of type 1 diabetes and display pathologies seen in serious human complications of both type 1 and 2 diabetes. Those include diabetic nephropathy or kidney disease, retinopathy, and neuropathies in which patients lose touch or heat sensations.

Mice fed a fisetin-enriched diet remained diabetic, but acute kidney enlargement-or hypertrophy-seen in untreated mice was reversed, and high urine protein levels, a sure sign of kidney disease, fell. Moreover, fisetin ingestion ameliorated anxiety-related behaviors seen in diabetic mice. "Most mice put in a large area become exploratory," says Maher. "But anxious mice tend not to move around. Akita mice showed enhanced anxiety behavior, but fisetin feeding restored their locomotion to more normal levels."

The study also defines a likely molecular mechanism underlying these effects. Researchers observed that blood and brain levels of sugars affixed to proteins known as advanced glycation end-products-or AGEs-were reduced in fisetin-treated compared to untreated Akita mice. These decreases were accompanied by increased activity of the enzyme glyoxalase 1, which promotes removal of toxic AGE precursors.

The discovery of an AGE-antagonizing enzyme upregulated by fisetin is very intriguing, because substantial evidence implicates high blood AGE levels with many if not most diabetic complications. "We know that fisetin increases activity of the glyoxalase enzyme and may increase its expression," says Maher. "But what is important is that ours is the first report that any compound can enhance glyoxalase 1 activity."

Interestingly, excessively high AGE levels also correlate with inflammatory activity thought to promote some cancers. In fact, studies published by others confirm that fisetin decreases tumorigenicity of prostate cancer cells both in culture and in animal models, which if supported would represent a major added incentive to eat your strawberries.

To ingest fisetin levels equivalent to those fed Akita mice, Maher estimates that humans would have to eat 37 strawberries a day, assuming that strawberry fisetin is as readily metabolizable by humans as fisetin-spiked lab chow is by mice. Rather than through diet, Maher envisions that fisetin-like drugs could be taken as a supplement.

Schubert notes that fisetin is also effective in mouse models of Alzheimer's disease. "We and others have shown that diabetes may be a risk factor for Alzheimer's disease, making identification of a safe prophylactic like fisetin highly significant," he says.

Maher acknowledges that the public may be suffering from flavonoid-fatigue, given media coverage of the promises of these compounds. "Polyphenolics like fisetin and those in blueberry extracts are found in fruits and vegetables and are related to each other chemically," she says. "There is increasing evidence that they all work in multiple diseases. Hopefully some combination of these compounds will eventually get to the clinic."

Schubert concurs that their findings only reinforce what common sense and our mothers told us was a healthy lifestyle. "Eat a balanced diet and as much freshly prepared organic food as possible, get some exercise, keep socially and mentally active and avoid sodas with sugar and highly processed foods since they can contain high levels of AGEs," he advises.

But he also worries that hoops that must be jumped through to bring a natural product like fisetin, as opposed to a totally synthetic drug, to clinical trials are daunting because it is difficult to protect patents on natural products. "We will never know if a compound like fisetin works in humans until someone is willing to support a clinical trial."

Source: Salk Institute

Ayumi Kinoshita Cool in Black

This is kind of a late treat but it's nice to see her here.  I wonder where this is....

The mysterious aura is still there...

Ready to sip some juice...

She's now sipping it...

Woah a new case to crack!

Just fooling around?

Still ever mysterious Jasmine!

Pictures taken from:
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Coral Compound may help with Neuropathic pain

Today's post from (see link below) is one of those where we have to ask the reader if they know anything more than is told here. It was published in 2009, so one assumes that some progress has been made in the development of a Capnellene compound as a pain relieving drug. It certainly sounds interesting.

Neuropathic pain: The sea provides a new hope of relief
Published: Tuesday, August 4, 2009 - 19:09 in Health & Medicine

A compound initially isolated from a soft coral (Capnella imbricata) collected at Green Island off Taiwan, could lead scientists to develop a new set of treatments for neuropathic pain – chronic pain that sometimes follows damage to the nervous system. Currently this form of pain is very poorly controlled by the usual analgesics (aspirin like drugs (NSAIDS) or even opioids like morphine) and novel treatments are urgently required. The conclusion of a paper published today in the British Journal of Pharmacology is that this new compound could be a candidate. Recent research suggests inflammation in the nervous system is a major causative factor for this condition. Inflammation activates supporting cells, such as microglia and astrocytes, that surround the nerve cells. These activated cells release compounds called cytokines that can excite nerves carrying pain sensation (nociceptive pathways) and cause the person to experience mildly uncomfortable stimuli as very painful (hyperalgesia), or stimuli that would normally induce no discomfort at all as painful (allodynia). Thus, cold drafts or lightly brushing the skin can produce intense pain, severely affecting the person's quality of life.

The treatments that give some relief to some patients are a very mixed bunch, nearly all found empirically and with many other effects. Amitriptyline, an anti depressant now used for urinary incontinence, has given relief in neuropathic pain; similarly, two drugs designed for treating epilepsy - gabapentin and pentagabalin have also proved effective for some sufferers. However, many patients do not respond to these currently available drugs.

"New, effective and safe painkillers are urgently needed for patients with neuropathic pain," says Dr Zhi-Hong Wen, who played a key role in a research study searching for novel compounds that have potential for use in pain relief. Dr Wen and colleagues work at the Department of Marine Biotechnology and Resources, National Sun Yat-Sen University, Taiwan.

Although the chemical they studied, capnellene, was originally isolated in 1974, it is only recently that scientists have started to appreciate its potential. Capnellene is interesting because its structure is very different from pain-relieving drugs currently in use. Initial experiments suggested that it may have pain-relieving properties. Working with Yen-Hsuan Jean MD, PhD and other colleagues, Dr Wen tested capnellene and a second very similar compound, in isolated microglial cells and in experimental models of the condition in rats.

They found that the compounds significantly reduced pain-related activities in isolated microglia, and that these compounds also significantly reversed hyperalgesic behaviour in the experimental rats.

"To provide better quality of life, we need new drugs that can act rapidly and have specific functions with low side effects. Moreover, we need better management for chronic pain conditions," says Dr Wen.

"Today there are few pharmacological agents that can help people suffering from neuropathic pain, but we believe that these marine-derived compounds could lead to the development of a new range of drugs of great potential," he adds.

Were you tested for Neuropathy in the most efficient way?

With the increase in neuropathy patients due to (amongst others) both diabetes and HIV, the importance of efficient testing goes without saying. At the moment, with the current financial squeezes, it's a bit of a lottery and most neurologists, certainly here in Europe, will go for the cheaper options but they are not necessarily the most efficient, or in the patient's interest. Apparently in the Michigan area and perhaps on a wider scale across the U.S. doctors will use MRI's in their testing, which does seem a little like using a sledgehammer to crack a nut! In defence of the doctors using the cheapest options, a neuropathy diagnosis can be made on the basis of an examination and the patient's testimony alone because the symptoms are so specific but standard, cost-efficient, testing methods should surely be established in what is a 'growing' area of medicine. Today's post comes from (see link below) and is based on a University of Michigan study.

Neuropathy Patients More Likely to Receive High-cost, Low-yield Screening Instead of More Effective Tests
ANN ARBOR, Mich., Jan. 23, 2012 /PRNewswire-USNewswire

U-M researchers found more efficient diagnostic tools are not always used, results reported in Archives of Internal Medicine

Researchers at the University of Michigan analyzed the tremendous cost of diagnosing peripheral neuropathy and found that less expensive, more effective tests are less likely to be used.

Almost one-quarter of patients receiving neuropathy diagnoses undergo high-cost, low-yield MRIs while very few receive low-cost, high-yield glucose tolerance tests, according to the study that will be published Jan. 23 in the Archives of Internal Medicine.

The research was led by Brian Callaghan, M.D., assistant professor of neurology at the University of Michigan Medical School.

Patients diagnosed with peripheral neuropathy typically are given many tests but physicians are highly variable in their approach, says Callaghan.

"We spend a lot of money to work up a diagnosis of neuropathy. The question is whether that money is well spent," Callaghan says.

For patients with peripheral neuropathy, the nerves that carry information to and from the brain don't work property. This commonly leads to tingling or burning in arms or legs and loss of feeling — and the symptoms can go from subtle to severe.

Diabetes is the most common cause of this type of nerve problem. Peripheral neuropathy is found in about 15 percent of those over age 40.

Researchers used the 1996-2007 Health and Retirement Study to identify individuals with a diagnosis of peripheral neuropathy. They focused on 15 relevant tests and examined the number and patterns of tests six months before and after the initial diagnosis.

"Our findings, that MRIs were frequently ordered by physicians, but a lower-cost glucose tolerance test was rarely ordered, show that there is substantial opportunity to improve efficiency in the evaluation of peripheral neuropathy," Callaghan says.

"Currently no standard approach to the evaluation of peripheral neuropathy exists. We need more research to determine an optimal approach.

"We do a lot of tests that cost a lot of money, and there's no agreement on what we're doing."

The climbing rates of diabetes in the U.S. make this research even more important, says co-author Kenneth M. Langa, M.D., Ph.D., a professor of Internal Medicine at U-M, a Research Scientist at the VA Ann Arbor Healthcare System's Center for Clinical Management Research, and Research Professor at the Institute for Social Research.

"We know more and more people may develop peripheral neuropathy because it is commonly caused by diabetes. Our study suggests that the work-up currently used for neuropathy isn't standardized and tests that are less useful and more expensive may be used too often," says Langa. "We need a more efficient way to handle this increasingly common diagnosis."

Do You Have Neuropathy In Your Feet?

Because neuropathy is generally not well known as a disease, most people really aren't sure what's happening to them in the beginning. Today's useful, basic article from (see link below) helps explain whether what you're feeling is neuropathy or not. Even after reading this, you should get confirmation from a doctor, or better still a neurologist. There are many forms of neuropathy and also many causes. It's important to get an accurate diagnosis on both counts. Finally, the remedies mentioned here are just a few of the many possibilities available and again, doctor's advice is very important.

Do I Have Neuropathy In My Feet?
By: Brandt R Gibson DPM - a foot and ankle specialist with special interest in neuropathy and the new treatments.

Often, I see patients in our office concerned about strange feelings to their feet. Many are found to have neuropathy (or peripheral neuropathy). Neuropathy is the poor functioning of nerves and can lead to significant abnormalities in the feet and legs. Do you have neuropathy? Some simple questions are:

- Are your feet numb or do your feet feel dead? - When you injure your feet, do you feel pain? - When walking on your feet, do you have difficulty feeling the feet or do you trip regularly because you can't feel your feet? - Can you feel heat or cold in my feet or hands? - Do your feet tingle? - Do you have regular "pins and needles" sensation to your feet? - Do you have burning, stabbing, shooting or electrical shock pains in your feet? - Are your feet overly sensitive to touch, including pain from bed sheets or other items that shouldn't hurt? - Do you feel like there is cotton, leather, or sock on your foot, even when there isn't? - Do your feet hurt significantly at night and keep you awake?

An abnormal answer to any of these questions usually indicates neuropathy. Neuropathy can be a complex problem with multiple possible causes including diabetes, AIDS or HIV, toxins and metallic poisons, certain chemicals, alcoholism, vitamin deficiencies or nutritional imbalances, it may also occur from systemic diseases (kidney failure, liver disease, rheumatoid arthritis, abnormal blood proteins, cancer especially with chemotherapy, leukemia and shingles). Entrapment may also lead to the symptoms of neuropathy. Diabetes is the most common, however in the United States.

There are multiple theories on the cause of neuropathy, but the most common theories included blood flow interruption to the nerves or nerve fiber damage (or a combination of these). Therefore, for many years it was thought nothing could be done to improve neuropathy. You may have been told this about your discomfort. That is no longer the case. Many new treatments are coming that may help neuropathy.

The most common natural substances to improve neuropathy are B complex vitamins: B1 (thiamine), B6, B12 and folic acid. Many of the over-the-counter vitamins that contain these products, however, are in a form that are not as easily absorbed or utilized by the body. In our research, we have found two products that provide the vitamins in a form that are beneficial and easily utilized by the body.

1. Metanx - A prescription item that contains L-methoylfolate, Pyridoxal 5'-phosphate and Methylcobalamin (all natural forms of folic acid, B6 and B12 respectively). These products work together to produce increased blood flow to the nerves and assist in nerve repair. Many people are encountering improved feeling in their feet and decrease of their symptoms. It usually will require treatment for at least 4-6 months to insure it has sufficient time to help repair nerves.

2. Neuremedy - A over-the-counter item that contains a form of B1 (benfotiamine) that is absorbed and modified by the body to the active form of B1 (thiamine). Most forms of this vitamin fail to be absorbed in the body, but the benfotiamine of Neuremedy is easily absorbed and utilized by the body. It has been shown to nourish dysfunctional nerves and allow them to conduct impulses more normally. It has been utilized since the early 1960s in Europe and Asia on thousands of patients.

So, neuropathy although a common problem doesn't need to continue to cause problems in your life. It can be treated often very effectively through the use of one of these two options. Many other options are also in the works.

Copyright (c) 2009 Mountain West Foot & Ankle Institute

Can Music Soothe Neuropathic Pain?

Today's post from (see link below) takes a look at music as a complementary therapy for people living with pain. Marion Good, a professor of nursing at Case Western Reserve University, first noticed the therapeutic powers of music while working as a nurse on a neurology unit and is now convinced that it can be used in conjunction with prescribed pain killers. It's an interesting idea that's free and easy to try out for yourself. In a way, it's a relaxation technique and we all know that the more relaxed we are, the less intense the pain. Heavy metal might not be the wisest choice unless you normally drift off to sleep to the dulcet tones of Black Sabbath!

Music for Pain
by Victor Limjoco

Marion Good loves to play music in her spare time. But as a professor of nursing at Case Western Reserve University's Frances Payne Bolton School of Nursing, she also prescribes it for pain relief. Now, a new study finds that while music won't replace painkillers, it can boost their effectiveness.

Good's interest in researching music for pain began when, as a nurse on a neurology unit, she worked with patients suffering from back pain. "I would bring music into the room—soft, quiet music. Their faces just relaxed ... pretty soon they fell asleep," she says. "I had to tiptoe out of the room and come back an hour or two later to pick up my tape recorder."

Good has been testing music with post-operative patients for more than 15 years. "I found that music does reduce pain up to about 31 percent in my studies, in addition to medication," she says.

The conclusion of a systematic analysis combining 51 clinical studies is music to her ears. The Cochrane Review of Evidence-Based Healthcare found that patients exposed to music rate their pain as less intense and even use lower doses of painkillers.

On a zero-to-10 scale, patients reported an average drop of .5 in their pain rating when listening to music. "It's not a huge amount," Good says, "but that's an average and for some people, it will be more, and for some it will be less." Since music has no side effects, she points out, there's no risk in trying it.

Good's latest study, conducted with Sandra Siedlecki of the Cleveland Clinic Foundation and published in the Journal of Advanced Nursing, found that patients with chronic pain who added music for pain relief got other benefits too.

"We found that music reduced pain, reduced anxiety, reduced depressive symptoms, and reduced pain disability," she says.

While the Cochrane Review cautions that music should not replace traditional primary treatments for pain, Good hopes this evidence will persuade other healthcare providers to consider music therapy as a complement to traditional treatment.

The Impact of Fluctuating Symptoms on People with HIV

One of the problems about neuropathy is that in the beginning, the symptoms can fluctuate. You can have periods with relatively few problems and other times where the neuropathy is clearly a part of your life. The same applies for many people in general with HIV, where neuropathy may only be just one of the health problems they have to live with. Today's post talks about the findings of a survey by the National Aids Trust and comes from (see link below). The survey found that these fluctuating symptoms can have a significant effect on people's working lives as well as their mental state at any given time. The recommendation is that more studies need to be done.

Fluctuating symptoms have major impact on quality of life and fitness to work, survey finds
Gus Cairns:Published: 07 September 2011

Common but non-specific symptoms of uncertain cause can dominate the day-to-day life of some people with HIV, a survey by the National AIDS Trust has found. In many cases symptoms such as fatigue, insomnia, depression, diarrhoea and neuropathy make it hard to work and perform other daily activities, the report of the survey finds.

The survey also found a significant degree of overlap between symptoms; generally, if people had one symptom, more than two-thirds of them were likely to have at least one other. One other finding was that the majority of respondents found that the symptoms were not only fluctuating, but were also completely unpredictable. This made planned activities, both at work and socially, difficult. About 60% of respondents were employed.

This study is a pilot survey of an independent working group brought together to review the Work Capability Assessment (WCA), the medical procedure under which claimants are assessed for Employment and Support Allowance. The WCA had been criticised, especially in an independent review conducted by occupational health expert Professor Malcolm Harrington, for being inflexible and for not being designed to accommodate illnesses characterised by fluctuating symptoms. See for more on the WCA and the Harrington Report.

Survey results in detail

The NAT study asked people with HIV to complete an online survey about their experience, during the previous six months, of five symptoms commonly associated with HIV: fatigue, anxiety or depression, insomnia, gastro-intestinal problems and neuropathy (nerve pain). There was space to mention other symptoms too.

It is not surprising that in a study inviting people to self-report, the majority of the 265 respondents had at least one of the symptoms on the list. The most common was fatigue, suffered by 57%, followed by depression or anxiety (55%), gastro-intestinal (GI) problems (48%), insomnia (46%) and neuropathy (33%).

More significant was the fact that more people experienced these symptoms as fluctuating rather than constant. Respondents described conditions as ‘constant’ with frequencies ranging from about 38% in insomnia to 24% in the case of GI problems, but as ‘varying over time’ with frequencies ranging from 53% in fatigue to 31% with neuropathy.

Fatigue was mentioned as a particularly common and troubling symptom. Very few respondents could usually predict when fatigue would hit them. One commented that “When I have it I am quite incapacitated and have no choice but to limit, stop or cancel plans to do things.” Another said “it is always there, lurking...if I do anything for more than an hour it begins to kick in.” One respondent managed to hold down a job but always required a nap of one to two hours immediately after coming home. Although 40% of respondents thought a combination of HIV and HIV medications caused their fatigue, 30% said they really had ‘no idea’ what caused it.

Depression and anxiety were nearly as common as fatigue, though respondents did not say they affected work so much. The main feature of these were their frequency: 90% of respondents said they had experienced either or both at some point in the last month. Given that a third of respondents said that bouts of depression or anxiety lasted more than a week at a time, many people must be living with severely disordered mood a lot of the time.

Diarrhoea, nausea and other GI problems were the symptoms most likely to be linked in people’s minds to HIV treatment. Thirty per cent of respondents thought these were the exclusive cause of their problems and 45% thought HIV and HIV treatments were both to blame. The frequency of bouts of diarrhoea varied from once to more than five times a month.

Insomnia and poor sleep, especially chronic, not only impacts on quality of life: it is a cause of significant physical and psychological illness. Although this has been associated with HIV drugs, especially efavirenz, 45% of respondents did not know why their sleep was so poor. Sleeplessness was very unpredictable – people would be fine one night and not the next. Forty-three per cent said having problems sleeping could last for more than a week. When insomnia is this prolonged, memory, mood and cognitive function can be severely affected. One respondent said sleep problems meant “I am unable to focus on my work, feeling like I have jet lag.”

Neuropathy (nerve pain) was the least-experienced of the conditions but was still suffered by a third of respondents. About equal numbers of people attributed it to HIV itself and to HIV drugs. In some cases the pain of neuropathy was constant – one person said his feet were always sore and this prevented standing or walking for more than 15 minutes. But the majority said that while some symptoms such as numbness were always there others, such as stabbing pains, were unpredictable and often severe.

Most respondents suffered from multiple symptoms: for instance, of those with depression or anxiety, 75% also had fatigue and 57% insomnia; of those with neuropathy, 61% had fatigue and 68% GI problems.

About 40% of respondents were unemployed, with a higher proportion among those reporting GI problems or fluctuating neuropathy. There was a generally positive attitude to work, with one respondent happy to have just started a job after 18 months of unemployment – “I am knackered but happy to be working,” s/he said.

In other cases however it was clear that fluctuating symptoms were significantly affecting people’s ability or willingness to work. One question asked “on how many occasions in the past four weeks have your symptoms significantly affected your ability to work”? A quarter of people with fatigue, 20% with neuropathy, and about 15% of those with depression and GI problems reported that this had happened more than five times in the past four weeks.

One respondent asked: “How do you work round this kind of thing unless you work for yourself or for an extremely understanding employer?”

Conclusions and recommendations

NAT concludes that the responses to their survey reveal that fluctuating symptoms are a cause of real morbidity and distress to people living with HIV and place significant barriers to work. They add that the variation and unpredictability of symptoms was often as much of a problem as the symptoms themselves.

Because the symptoms are fluctuating, ESAs may not capture them if the person is having a ‘good day’, but there are other methods of assessment, such as asking people to keep a symptom diary.

NAT recommends that more research needs to be undertaken into these common, fluctuating symptoms and that HIV organisations should raise awareness amongst employers, and with people with HIV themselves, about the importance of making reasonable adjustments at work to enable people with HIV to continue in employment.

In terms of the ESA itself, NAT recommends that ESAs need to take into account “the full range of barriers fluctuating symptoms present to participation in work and other daily activities,” including their unpredictability and the fact that they come in combination.

“Assessment should consider the impact of fluctuation and the cumulative impact of multiple, lower-level symptoms on people living with HIV,” they comment.

Massage Helps People with HIV and Neuropathy

Another interesting article from the Australian, (see link below) describes one man's way of giving back to the community. Someone to massage your hurting body for you seems to me a fantastic way to make you feel better. No 'happy endings', or commercial rip-offs, just careful massage carried out by someone who knows what he or she is doing. It's an idea that should be promoted in as many places as possible, though finding the volunteers with the right intentions might be easier said than done. Hats off to Mr Page.

Touching bodies - and souls
by Greg Page - •This article was originally published in the Oct-Nov 2011 edition of Talkabout

Greg Page reflects on what leads him to donate an hour of his time each week to massaging HIV+ clients.

Once a week I do a volunteer massage for HIV+ patients. As a trained massage therapist with over five years of experience, I'm constantly asked the same question by my clients, who are almost invariably middle-aged men: "Are you one of us?" By which they actually mean, "Are you HIV positive too?"

There is always a real sense of relief in their voices when I reassure them that, yes, I understand the nuances of niggling neuropathy, constant painful twinges and strange, doctor-confounding ills that can befall a person who is a long-term sufferer. You see, I'm a massage therapist who has also been HIV+ now for eight years.

I actually began my training about six years ago at a course offered by an instructor who wisely believed it a good idea to give newly-HIV+ men an insight into their bodies, what makes them tick and what makes them tick better. Massage therapy is a skill for life, as well as a skill that can help and heal, for both the giver and the receiver. My massage training took about six months to complete. It included two hours per week of intensive anatomy lessons, with a book to practice with, not a body, in case you're wondering. I had to learn multisyllabic phrases and convoluted names for parts of the body that normally only specialist doctors would know off my heart. In my course, of the 10 HIV+ men who began the training, only six finished. One disappeared never to be seen again, one became a crystal addict, another decided it was all too hard and another took his first three months of training and turned it into a business, touting himself as the "massage therapist who gives happy endings".

96 percent

I finished my training with a 96 percent score, something I was very proud of, although I wasn't top of my class – a hunky Canadian-born guy scored 99 percent (though I did better than him in the practical assessment!)

Over the course of our training, our group constantly practised on each other, but the biggest challenge we faced wasn't concentrating on what we were doing or making sure we were doing it properly. It actually came when we had to massage a group of HIV+ women.

None of us was familiar with women's bodies and it was a truly eye-opening moment. As gay men we are generally so unfamiliar with the curves and nature of a woman that it took some major readjustment for us as massage therapists to accommodate them. It was a good lesson in what was to come as a masseur – everybody is different and some bodies are more different than others.

Although our course had been offered free, the deal we all agreed to was that on successfully completing the course and qualifying, we would have to allocate 60 hours of free massages to community services. Somehow for me that 60 hours has now become six years of offering my services to the HIV+ community.

Troubled bodies and minds

Most of the men I massage are relatively advanced in their HIV+ prognosis. Some have lived with it for over 20 years. One man told me he knows he has been positive since 1980, if not before. He witnessed his entire circle of friends, lovers and ex-lovers die before his very eyes in those early first years of AIDS. He is now somewhat bitter, quietly angry and rather fed up with life. The massage I give him every few weeks helps alleviate the pain not only in his riddled body, but his troubled mind.

The one question I always like to ask my clients is what their job is. Some are still working and on my bench, laid out in front of me, I've had professions as varied as shopkeeper, actor/model, ad agency boss, librarian, historian, labourer, insurance man, personal trainer, healthcare worker, recovering addict and full-time nudist. Some of the men have been on sickness benefits for so long they can't even contemplate the idea that they could once again be valuable members of the workforce. They never thought they would live this long, let alone be healthy enough to return to the jobs they assumed they were leaving to go and die. The meds changed things and kept them alive. Some of my clients are happy about this, yet others feel somehow guilty they survived. Some like to talk about how they feel, with the massage helping to ease their suffering and their inhibitions, while others prefer to just simply enjoy the serenity of being able to have their body caressed and touched like they haven't been touched in a long time.

It's a powerful reminder to me as to how important the sense of touch is. Although we often think seeing is believing, through my work with clients on the massage bench I have come to see that the greatest gift I can give to those who are suffering, or who have suffered hard, is simply that of a compassionate, caring touch.

No words

Sometimes there are almost no words before, during or after our one-hour sessions. Some people choose to lose themselves for the 60 minutes, regaining a connection with their body tissue that years of toxic medication, intensive doctor prodding and a raft of severe illnesses have left tenuous and tense. If I can help ease that tension, then I feel my work has been a success.

Generally my clients leave after the massage feeling the best they've felt in a long time. "I feel like I'm floating" is a piece of feedback I receive constantly. That's when I know that not only have I done a good job, but I made the right choice in volunteering my services, rather than charging a fee and making it my full-time profession.

It's a shame there are not more people from the HIV+ community who get involved in complementary therapies. Not only does it help you give something back, but also gives you a link to the past of the AIDS epidemic. It's a way to help ease those survivors through the new era of manageable chronic illness.

More alive

One week recently I massaged a blind man who brought in his guide dog, which sat quietly as his owner groaned his way through our session. It was as if my client had not felt a human hand near his weakened body in a long time. He shook my hand firmly afterwards and I could tell he felt more alive.

I truly get a strong sense of satisfaction when I finish my volunteer session each week. Not only because I know I'm doing something good for others, but because I'm actually doing something good for myself. You should try it some time – you might find it as soul-enriching as I do.
Greg Page

Dragon Based Sentai Villains

Happy Chinese New Year!  While the heroes brought their treats, so did the villains.  Here are the dragon based villains who's coming to crash your party:

Prince Salamandes- The fourth son of Grandienne, demon of fire calamnity.  He started out pretty cute as Drop but he became a monster thanks to Zylpheeza's demise and him inheriting the star gem.

Ryuon- He's a man with dragon genes in him from Lemuria.  One of his monsters Talong was based on a Chinese dragon and a master of Feng Shui.  His faction in Boukenger was also dragon-based.

Long- He's actually a five headed dragon with all five heads working in unison.  The dragon is the fifth in the Chinese zodiac too.

A Neuropathy Story from Down Under

Today's post comes from an Australian HIV site, (see link below) and is an excellent personal account of one person's experiences with neuropathy. Although from 2007, it still remains completely relevant today. We may be a bit further along the line with Capsaicin patches but many neuropathy sufferers will recognise everything this person says. Definitely worth a read.

A trial, but definitely worth it
•This article was originally published in the Aug-Sep 2007 edition of Talkabout

One night in January 2003, I was dancing at a nightclub, my favourite activity, when suddenly I stumbled and almost fell. I was steadied by a couple of people who laughed and made some remark about the drugs I was on and my style of dancing. After laughing along with them, I hobbled to the nearest seat and sat down. But it was not about drugs. My feet were painful. They were burning, which was something I had experienced before. This time they felt like two sponges and I had no sensation and could hardly feel the floor. For the first time my balance was not as acute as it usually was. It scared me because I had never fallen on a dance floor in my life.

These sensations came and went over the next couple of months. At first I thought that the numbness might be a precursor to diabetes, a hereditary condition in my family, but that didn’t explain the pain. One day I was visiting a friend who had peripheral neuropathy, and I asked him to describe the symptoms. To my horror they were identical to what I was experiencing. There were days when I was completely pain free, and days when I wasn’t, but the numbness in my feet seemed to be here to stay.

Trial and error
My specialist sent me for a Nerve Conduction Study, where the doctor virtually electrocuted my feet. This was even more painful than the neuropathy. My GP referred to this as Nazi torture and I could not agree more. The purpose of the test was to determine if the neuropathy had been caused by HIV or not. Well I could have told them that it was, because I was HIV positive and I hadn’t even started treatment.

My GP referred me to a neurologist to have the condition monitored. The neurologist suggested increasing my dosage of epilum, which in some cases can help with neuropathy. Although I don’t like the feeling of being too “drugged” I agreed to give it a go, but it didn’t have any effect on my neuropathy.

Nevertheless it seemed to stabilise. I had good and bad days, monitored the situation with bimonthly appointments with my neurologist, and had Panadeine Forte on hand at all times if the pain became too much. I have to be cautious about the amount of Panadeine I take because it contains paracetamol which is bad for the liver.

I tried acupuncture, which seemed to work for some people but not for me, and I stopped it. I even tried laser treatment, as it had worked for about seventy- five per cent of the people who chose it. Again I was in the minority. It didn’t work and I soon stopped that treatment as well.

A turn for the worse
At the beginning of 2006 I was starting to think that I was wasting everyone’s time and money seeing the neurologist, when things started to become worse. By August the pain was intolerable and my balance was so bad when I walked up stairs I had to hold onto the handrail. I was about to go on a trip to Ubud in Bali. My GP consulted with the specialist and they agreed that I should take eight Panadeine Forte a day to get me through the trip and until I could see the neurologist again. He suggested that I might need to try something stronger like morphine, which was something I did not want to hear.

I managed to have a good time in Ubud but could not do the walking I used to do. My legs and feet would tire easily, and the pain, even with the Panadeine Forte, became quite intolerable. During my next visit to the neurologist I was there for half an hour instead of the usual fifteen minutes. We discussed alternatives, including changing HIV medication, but the current combination was working so well with minimal side effects. Of the eight major medical conditions I have, HIV has always been the least of my concerns.

I agreed to start on the dreaded morphine. Of all the drugs I have had to take it would have to be my least favourite.

Being aware of treatment interactions
After a week, I returned to see the neurologist and told him the pain was better but still not tolerable. After much discussion, we agreed to add another drug called Allegron, an anti-depressant, which can, when taken in small doses, aid in pain relief.

The pain was better, but after a few weeks I noticed a significant change in my mood. The dysphoric hypomania, a medical condition I am prone to, was back. My GP sent me back to my psychiatrist who confirmed the diagnosis and told me that it was most likely caused by the Allegron which is in a class of antidepressant drugs I’m unable to take. I had forgotten this and will never forget it again.

I had to withdraw from the Allegron, increase the epilum, and take another drug called risperdone to control the hypomania. When you have so many doctors who prescribe medication for you, there is so much to remember. I feel it is my responsibility to ensure that they do not prescribe a drug that causes adverse reactions. For example my neurologist wanted to prescribe Abacavir instead of the Allegron, but I have hypersensitivity to Abacavir and it will kill me. This is all part of me taking control of my health.

A new treatment trial
Towards the end of 2006 my neurologist asked me whether I’d like to take part in a new research study to determine whether a new treatment could end the pain of neuropathy. It was a one off treatment where capsaicin patches are placed on your feet for either thirty minutes or an hour. The drug in these patches is a man-made version of a peppery substance found in chilli peppers called capsaicin and the patches are placed directly over the painful areas. The study was to be conducted over fourteen weeks.

Screening Visit
On a Wednesday afternoon mid January I presented myself to the Immunology and Infectious diseases section of St Vincent’s Hospital for the screening visit. The clinical nurse measured my height and weight, took blood, conducted an ECG and asked about the medications I was taking.

The neurologist asked me another set of questions about the level of pain and amount of medication I was taking to ease it. Because I was only taking 30mg of morphine per day and still experienced a great deal of pain, I was still eligible to go on the trial. At the end of all of this the clinical nurse gave me a Pain Diary questionnaire, which I had to complete each night at 9pm, rating the pain on a scale of zero to ten, and making any comments if necessary. I had to keep scoring in the diary for two weeks before the patches were applied to my feet. The nurse briefed me on the whole procedure extremely well. In fact I felt more prepared for this trial than I have for any other.

Study Patch Application Visit Two weeks after the Screening visit I went for the Study Application visit. My blood pressure, temperature, CD4 Count and viral load were measured and heart rate monitored. During this visit I had to rate the level of pain before, during, and after the study patch application. A numbing cream was put on my feet before the patches were applied. The cream was left on for an hour, and I was grateful that I took a book along to read. After the numbing cream was removed, the patches were finally placed on my feet, and they had to be left on for either thirty or sixty minutes. Mine were to be left on for thirty, and I hoped that this was not an omen that I was going to receive the placebo. It was a double blind trial, so we had no idea. During the time the patches were on my feet, they felt warm and there was a tingling, but no burning, sensation. After thirty minutes the patches were removed and my feet were cleaned.

I had to stay at the clinic for an hour while regular observations were taken of my vital signs, followed by completing a survey about my general state of health. I gave the nurse my completed pain diary, and was given a new one for the next four weeks. They also gave me some Panadeine Forte to take home on the condition that I take back what I hadn’t used so that they would know how much pain medication I needed to use after treatment.

That night my feet were so warm I could not sleep with them underneath a sheet, but then it was summer. Every Wednesday for the next few weeks, the clinical nurse called me to see if I had experienced any problems. I hadn’t, and my pain ratings were mainly zero, and occasionally went to a score of one. The treatment seemed to be working.

Follow up visit week 4
Four weeks later, my visits with my neurologist did not last for long because the pain had miraculously gone away. I returned the box of Panadeine Forte unopened. I am currently taking morphine, and wondered if this was the reason why. During this visit when my neurologist examined my feet, I experienced some sensation in my left big toe. That may not seem significant, but for five years I had no sensation whatsoever. This doesn’t mean that the neuropathy is cured. I still have mobility issues including poor balance, but it is marginally better.

Follow up visit week 8
After the eighth and final week, I am back at St Vincent’s hospital. I hand over my final pain management diary. I am weighed, blood pressure and temperature are taken, and there are more blood tests. I then fill out the endless forms relating to my general well being, including my mental health, which I found to be somewhat curious, but completed it anyway. The trial has been a major success for me because although I still have peripheral neuropathy, the amount of pain is significantly reduced. Brett the nurse asked me if I would participate in the treatment again and I said that I would.

In my next visit to the neurologist, I discover I have some sensation in my toes that I have not experienced for many years. I also have to start withdrawing from the morphine I have been taking for the past seven months combat the pain when it became so severe. The withdrawal is a very unpleasant experience but I realise that my body will adjust in time and I should feel well again.

On a final note, if anyone has peripheral neuropathy and an opportunity comes along to participate in the trial, give it a go. The benefits far outweigh the efforts made to participate in it.

Peripheral and Autonomic Neuropathy

As regular followers of the blog will know, every now and then it's important to post an article which gives a general description of neuropathy without going into too much detail. Many people arrive at the blog needing to know more about what they've recently heard of, or have been diagnosed with. Today's article comes from (see link below)and gives an easy to understand, overall explanation of both peripheral and autonomic neuropathy; useful for anybody encountering the disease for the first time.

Complete Information On Autoimmune Peripheral Neuropathy With Treatment And Prevention
By: Juliet Cohen

Autoimmune incidental neuropathy is a neurological disorder that affects the sensory, machine and autonomic nerves, and is caused by irregular role of these nerves payable to respective etiologies. Peripheral neuropathy often affects people with diabetes and autoimmune diseases such as rheumatoid arthritis and lupus. Certain vitamin deficiencies, some medications and alcoholism can also damage peripheral nerves. These disorders can originate from numerous causes, such as diabetes, alcoholism, HIV, toxin exposure, metabolic abnormalities, vitamin deficiency, or adverse effects of certain drugs. Excessive drinking of alcohol can affect nervous system, causing numbness of hands and feet. Exposure to poisons, such as some toxic substances and certain medications - especially those used to treat cancer may be an another cause of Autoimmune peripheral neuropathy.

In intense neuropathies, such as Guillain barre syndrome, symptoms seem abruptly, advance quickly, and solve slowly as damaged nerves mend. In chronic forms, symptoms start subtly and advance slowly. Unfortunately, peripheral nerves are fragile and easily damaged. Damage to a peripheral nerve can interfere with the communication between the area it serves and your brain, affecting your ability to move certain muscles or feel normal sensations. The best way to prevent peripheral neuropathy is to carefully manage any medical condition that puts you at risk. In many cases, peripheral neuropathy symptoms improve with time - especially if it's caused by an underlying condition that can be resolved. As much as possible, avoid repetitive motions, cramped positions and toxic chemicals, all of which may cause nerve damage.

Because every incidental heart has an extremely specialized role in a particular region of the system, a broad array of symptoms can happen when nerves are damaged. Symptoms of an autoimmune incidental neuropathy may include failing, cramping, decreased sinew reflexes, apathy, tingling, and pain affecting the weaponry and legs. Neurological symptoms may occur related to your central nervous system, which consists of your brain and spinal cord, or your peripheral nervous system, which links your spinal cord and brain to all other parts of your body. Others may suffer more extreme symptoms, including muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur.

Treating the underlying circumstance may alleviate some cases of incidental neuropathy. In new cases, handling of incidental neuropathy may concentrate on managing pain. Maintaining natural blood bread levels helps defend your nerves, though your symptoms may initially get worse before they begin to improve. Drugs such as gabapentin, carbamazepine and phenytoin are originally developed to treat seizure disorders. However, doctors often also prescribe them for jabbing pain. Antidepressant medications, such as amitriptyline, nortriptyline, desipramine and imipramine, may provide relief for mild to moderate symptoms by interfering with chemical processes in your brain that cause you to feel pain. Side effects may include drowsiness and dizziness. In some cases of nerve compression, you may need surgery to correct the problem. Several drug-free therapies and techniques may also help with pain relief.

The Cost Of Neuropathic Pain

Given that the findings described in today's post from the excellent (see link below) were published in 2004, you may need to add on the added inflation that has shot throught the roof since then. The figures then become even more striking but the principles behind the statistics remain the same. It's very obvious to readers of this blog that we also suffer from another chronic condition (HIV) and that the costs of our treatment rise exponentially but we're not the only ones. This article shows that people with neuropathy are very likely to suffer from other conditions too, with all the financial consequences for the individual, the insurance company, or the state that you can imagine.

The High Cost Of Neuropathic Pain ...

A new study has shown that people with a Painful Neuropathic Disorder (PND), like many CM/SM patients have, are much more likely to suffer from other chronic pain conditions, other chronic diseases - such as heart disease, incur much higher annual medical costs, and may not be receiving the most effective medicines for their pain. A PND is any pain that is caused by nerve damage and usually manifests as abnormal sensations, or hypersensitivity, to normal stimuli, such as a light touch or even clothing. Neuropathic pain is usually chronic in nature and can be very debilitating.

Ariel Berger, from Policy Analysis Inc., and his colleagues, teamed with Pfizer, Inc.(a large drug manufacturer who funded the study), to examine the clinical characteristics and economic costs associated with PND's. They published their results in the April, 2004 issue of the Journal of Pain, which is published by the American Pain Society (

In order to assess the impact of PND's, the researchers utilized the data in a large healthcare insurance claims database (the identity of the individual subjects was always protected). This database houses information on more than 3 million people, and from this, the researchers identified over 50,000 people who had been to the doctor at least twice in the year 2000 and suffered from a PND, such as back/neck pain due to neuropathy, diabetic neuropathy, post-herpetic neuralgia, etc. The researchers also created an age and gender matched control group - meaning the average age and male/female ratio was identical - of the same number of people who did not have a PND.(see Figure 1 below)

The group wanted to look at how having a PND affected a person's overall health, the economic costs associated with a PND, and the types of drugs being taken to help with the pain. What they found was staggering.

The data revealed that people with a PND are much more likely to have other chronic conditions, such as headaches, other pain syndromes, heart disease, diabetes, etc. In fact, over 70% of the PND group also suffered from two or more other chronic conditions. This is in stark contrast to only 13% of the control group with two or more chronic conditions. At the other end, only 6% of the PND group did not have another chronic condition, whereas the majority (69%) of the control subjects had no other chronic disease.

As to be expected given it's impact on overall health, having a PND is very expensive as well. Subjects in the PND group incurred an average of over $17,000 in medical costs annually. In comparison, subjects in the control group only rang up an average of $5,700 in medical costs per year.

The researchers also found something interesting in looking at the types of drugs used by the PND subjects. By far, the most common drugs taken were simple NSAID's, with close to 40% of people using these types of drugs. In contrast, only 11% were using antiseizure drugs (such as Neurontin) or antidepressants. This despite the fact that research has shown that drugs like Neurontin and some antidepressants can have a significant impact on chronic pain. The authors point out that this data raises the question of whether these people are receiving best care possible.

The authors do admit to limitations of their study, especially with the drug data. The information in the database only registered drugs that were purchased at a pharmacy, so if people were getting samples from their doctors, it would not be factored in. Despite the limitations of the data, the results clearly show the high impact, both physically and economically, of neuropathic pain, and demonstrate once again the importance of seeking out specialized care early when it comes to dealing with pain.

Key Points

1) Many Chiari, and especially syringomyelia, patients suffer from neuropathic pain even after corrective surgery

2) Study used a large health insurance claims database to study characteristics of people who suffer from a Painful Neuropathic Disorder (PND) as compared to people who don't have a PND

3) Researchers found that people with a PND have a significantly higher rate of other painful disorders, such as fibromyalgia

4) People with a PND have a significantly higher rate of other chronic conditions, such as heart disease

5) People with a PND incur 3 times the annual health care costs

6) Despite evidence that antiseizure and anitdepressant medicines can be effective in treating PND's, few patients were taking them

Figure 1
Selected Characteristics of PND Subjects vs. Control Subjects

PND Control
# of subjects 55,686 55,686
Avg. age 57.8 57.8
% female 58.5 58.5
% with one PND 88.9 N/A
% with two PNDs 9.8 N/A
% w/ no other chronic disease 6.1 69
% w/ 1 other chronic disease 23.5 18.2
% w/ 2 or more other chronic diseases 70.4 12.8
% taking antiseizure drugs 11.1 1.2
% taking antidepressants 11.3 2.4
% taking NSAIDs 39.7 13.8
Avg. annual healthcare costs in $ 17,355 5,715

Source: Berger A, Dukes EM, Oster G., Clinical characteristics and economic costs of patients with painful neuropathic disorders. J Pain. 2004 Apr;5(3):143-9.

Super Sentai's Dragon Warriors

In honor of the Chinese new year, I am going to do a review on the dragon based Sentai warriors as they appeared.  They are...

Hiryu Tsurugi/Change Dragon- The first dragon themed red ranger.  He's a pretty emotional individual despite being a responsible leader.

Burai/Dragon Ranger- First sixth ranger of the Super Sentai franchise, first dragon themed ranger to pilot an actual dragon mecha.  He is also Geki's brother, a villain at the start and died a hero in the end.  He could be the template to Mikoto but I could be wrong.

Ryou/Ryuuranger- The second red ranger to have a dragon theme.  He uses fire and lightning attacks.  He has a fiery passion in battle.

Ryunosuke Ikenami/Shinken Blue- He like a dragon can be pretty emotional and unstable as water.  He's also the first blue ranger to have a dragon theme.

Alata/Gosei Red- Perhaps the only dragon ranger who's not as fierce as he has a bubbly personality.  He has the ability to see the true essence of things even out of suit.

Neuropathic Pain Memories in the Spine

Today's interesting post from Discover Magazine (see link below) follows on from the post of a few days ago about opioids having the ability to remove the 'memories' of pain. A reader asked if there was more information on this subject and this article written by British science writer, Ed Yong shows how pain memories are stored in the spine and are subject to the workings of certain molecules. It may appear heavy going if you're reading this on the train on your way to work but it's written very clearly and certainly inspires hope for the future for long-term neuropathy sufferers.

A Memory for Pain, Stored in the Spine
Ed Yong, May 2011

You slam your hand in a door, and the experience becomes etched into your brain. You carry a memory of the swinging panel, the sound as it crushes your flesh and the shooting pain as your skin gives way. Your body remembers it too. For days afterwards, the neurons in your spine carry pain signals more easily form your hand to your brain. As a result, your hand feels more sensitive, and even the lightest touch will trigger an unpleasant reaction. It’s as if your spine carries a memory for pain.

This is more than a metaphor. Two groups of scientists have found that one special molecule underlies both processes. It helps to store memories in our brains, and it sensitises neurons in our spines after a painful experience. It’s a protein called PKMzeta. It’s the engine of memory.

When we learn new things, PKMzeta shows up at the gaps between neurons (synapses) and strengthens the connections between them. These bolstered synapses are the physical embodiment of our memories, and they are fragile things. It turns out that we need to continually recreate PKMzeta at synapses to keep our memories alive. If the protein disappears, so do our memories. Unlike the text of a book or the bytes of a hard disk, the information stored in our brain is constantly on the verge of being erased.

This has to be one of the most surprising discoveries of modern brain science, and it’s the handiwork of Todd Sacktor. In 2006, his team managed to erase memories in the brains of rats with a chemical called ZIP, which neutralises PKMzeta. Even very strong memories, which has been around for months, vanished irreversibly. This year, Sacktor did the opposite – he boosted old, faded memories in rats by giving them extra PKMzeta.

Now, Marina Asiedu and Dipti Tillu from the University of Arizona College of Medicine have shown that PKMzeta does more than stabilise memories in the brain. It’s also behind the lingering pain we feel after an injury.

Asiedu and Tillu knew that after a painful experience, neurons that carry pain signals develop stronger connections, especially those in a part of the spine called the dorsal horn. This is the same thing that happens in the brain when we learn something new, and the duo reasoned that PKMzeta might be involved in both processes.

To test their idea, Asiedu and Tillu injected mice in the foot with a chemical called IL-6 that triggered a mild swelling and made the limb more sensitive for up to three days. It mimicked the feeling that you get after you catch your hand in a door, without actually injuring the animals. Even after the swelling goes away, the paw remains sensitive – the ‘primed’ mice will react to a second chemical called PGE2 that wouldn’t normally bother them.

None of this happened if Asiedu and Tillu used ZIP (the anti-PKMzeta chemical). If they injected the mice with ZIP and IL-6 at the same time, their feet never became more sensitive. Without PKMzeta, they couldn’t develop a memory for the pain. Even if ZIP followed IL-6 by three days, it erased the sensitivity in the rodents’ paws – the treated mice didn’t react to a shot of PGE2. And when Asiedu and Tillu loaded the mice with a protein that mimics PKMzeta, their sensitive streaks returned.

These fresh results tally with those from another study by Korean scientists Xiang-Yao Li, Hyoung-Gon Ko and Tao Chen, which was published last year. They found that PKMzeta is also involved in a different type of chronic pain, caused by more severe damage to nerves around the body. Following this sort of damage, the PKMzeta memory engine starts chugging away in a part of the brain called the anterior cingulate cortex (ACC), leading to consistent and long-lasting pain. An injection of ZIP erased this pain, at least for a few hours.

The two studies have important differences that will need to be unpicked. Why, for example, did Asiedu and Tillu’s manage to erase the “pain memories” in the long-term, while the Korean team only did so for a few hours? Why was the hotspot of PKMzeta activity located in the spine in one study but the brain in another?

The answers to these questions could tell us a lot about the differences between different types of pain. But on the whole, the experiments build a compelling picture of PKMzeta accumulating in neurons after an injury, and priming them for persistent pain.

If the same thing happens in humans, then it might be possible to treat long-lasting pain with drugs that target PKMzeta. This is no trivial matter. A Europe-wide survey found that around one in five adults had suffered pain for more than 6 months. Around half of these people felt their pain constantly, and half had suffered for 2 to 15 years. They continue to suffer because we still know very little about the molecules responsible for this most primal of feelings. With PKMzeta, we’re one step closer to some answers.


Footnote: This study has a special significance for me, because it was partially inspired by this blog.

A couple of years ago, I wrote a feature for the Times about memories, and I interviewed Sacktor for the piece. As per usual, only a few select quotes made it into the article. But, as I often do, I posted the full transcript of the interview on this blog. In one of his replies, Sacktor suggested that PKMzeta might be involved in pain memory. He said, “There’s also a condition called central neuropathic pain syndrome, where people catch their finger in the car door and even after the injury heals, a memory for the pain is set up in the central nervous system. ZIP could erase that too.”

Theodore Price, the lead scientist behind Asiedu and Tillu’s piece (who blogs as Juniorprof), read the interview and was intrigued. He said to me, “His comment in your interview influenced me greatly and led to some of the experimental design we used in this paper. It was a total eureka moment for me.”

Sacktor is also pleased, especially since PKMzeta, seems to have roles in pain, addiction, post-traumatic stress and more. During his teenage years, Sacktor would argue with his father – a biochemist – about the best way to tackle diseases. His dad would argue that you need to understand the underlying biology first. Sacktor preferred tackling the disease directly. “I realized long ago my Dad was right,” he says. “The possibility that my father was more right and I was more wrong than I could have known, brings me more happiness than I could have imagined.”

Things have, in a way, come full circle – science inspires blog post, which inspires more science, which inspires a new blog post. It’s worth noting that the key quote from Sacktor never made it into the Times piece. Without that transcript, this new paper wouldn’t exist.

HIV-Related Neurological Diagnoses in Third World Countries

Today's post comes from a Neurology Today article from 2004 (see link below) and looks at the incidence of HIV-related dementia and sensory neuropathy in Uganda. Things may have changed locally since then but the fact remains that many over-worked and over-loaded doctors in Africa and other Third World lands tend to overlook both dementia and neuropathy because other conditions need more attention. However, the fact that anti-retrovirals are less widely available in cash-strapped lands, means that HIV-related neurological problems are more common. It certainly makes you realise that in many ways, we are lucky to have the treatment routes that we have but sad to realise that where a person is born, can have such serious health consequences.

International Effort To Improve Diagnosis of Hiv-Related Dementia in Developing Countries
Wilner, Andrew N. MD November 2004

SAN FRANCISCO - Reflecting the global and growing threat of HIV-AIDS, neurologists who treat HIV-related neurological complications are seeking ways to improve screening methods among resource-strapped third world nations to determine the need for retroviral therapy.

Ned Sacktor, MD, Associate Professor of Neurology at Johns Hopkins School of Medicine in Baltimore, MD, told Neurology Today, that ''what we're seeing in Africa in terms of the high incidence of HIV dementia is what we saw in the US about 10 years ago, prior to the use of retroviral therapy.

Despite the fact that neurologic complications are among the most frequent complications of HIV, very little is known about them in the developing world, Dr. Sacktor said, and resources are more limited.

Dr. Sacktor co-authored a study presented at the last AAN Annual Meeting here to test the validity of an International HIV Dementia Scale, a rapid screening test to help non-neurologists determine the need for retroviral therapy in patients with HIV living in sub-Saharan Africa.

Matthew Wong, a medical student at McMaster University in Ontario, Canada, evaluated the validity of the test with colleagues from the Academic Alliance Infectious Disease Clinic in Kampala, Uganda. The Academic Alliance consists of several US and Canadian medical schools, as well as the University of Kampala. They are setting up a large HIV treatment clinic to deliver antiretroviral treatment to several hundred people in Kampala.

There was a previous screening test called the HIV dementia screening scale, but it required literacy, Mr. Wong said. Dr. Sacktor developed a simpler test with only three parts: four-word recall, motor speed (fine finger tapping), followed by a sequence of hand maneuvers (Luria test-fist, palm, cut for 10 seconds). We wanted to see how sensitive this test was in diagnosing HIV dementia against a gold standard of other neuropsychological tests. In addition, in environments where CD4 counts are not available, HIV dementia may be an indication for starting HAART (Highly Active Anti-Retroviral Therapy).

The researchers administered the International HIV Dementia Scale as well as detailed demographic, neuropsychological, neurological, and functional assessments on 81 HIV-positive and 76 HIV-negative individuals. The HIV-positive group scored significantly lower than the HIV-negative group on the International HIV Dementia Scale, 9.9 versus 10.9 (p < 0.001).Using a cutoff score of 10 for the International HIV Dementia Scale, its sensitivity was 80 percent, but its specificity was only 57 percent. Mr. Wong advised that patients who tested positive in the dementia screen could then be further examined for the presence of dementia. Mr. Wong said the results of the International HIV Dementia Scale correlated closely with the results of the more extensive neuropsychological testing.


A second part of the study assessed the frequency of sensory neuropathy in HIV-positive patients. Thirty-seven percent of HIV-positive patients complained of sensory symptoms, such as numbness, pain, or paresthesias in the feet. On examination, 38 percent had decreased ankle reflexes and 48 percent had decreased vibration in one or both feet.

Justin McArthur, MBBS, MPH, one of the coauthors of the study, said in a phone interview, that there were no pre-existing data at all regarding HIV peripheral neuropathy in Uganda. Dr. McArthur, an internationally recognized investigator on HIV infection, is Professor of Neurology and Vice Chairman for the Department of Neurology at Johns Hopkins University.

''We had been told that clinicians there really didn't see dementia or neuropathy, which is a very common refrain from busy physicians, not only in resource poor countries, but here as well. If you actually screen for these conditions, they are there. The prevalence is quite high, because these are largely untreated populations.

It's really parallel to what we see here in this country, Dr. McArthur continued.

''Dementia is not viewed as a major problem in the US, but up to 30 to 40 percent of HAART treated patients will have cognitive impairment.

The treatment of HIV sensory neuropathy at this time is largely symptomatic with anticonvulsants and antidepressants, just as with diabetic neuropathy. There are several large trials in the US for HIV neuropathy - one, with a novel compound called prosaptide, an analgesic agent that may have regenerative properties as well - and we're doing a large multicenter trial with 32 sites in the US, funded by both the NIH and the pharmaceutical industry.


Dr. Sacktor said Uganda was chosen as a test site because HIV is not as much of a taboo subject as it is in other undeveloped countries. It's discussed in churches and mosques. Ministers will speak about it. That's been going on for years now. Uganda has an estimated HIV prevalence of 5 percent, down from 15 percent in 1991. In youth, ages 15 to 25, the incidence has plummeted.

Dr. McArthur added: Uganda has approached HIV infection with a national public awareness program, called 'ABC' - Abstinence, Be faithful, Condom (if you can't be faithful). They teach it in schools, colleges, hospitals, and the workplace. That approach in large part has been responsible for the drop in seroprevalence in HIV. In this country, that hasn't happened on a national level, except for 'abstinence', and unfortunately it's not particularly successful either at a high school or college level. Australia is another example where strong public health messages have really made an impact on HIV seroprevalence.

Mr. Wong noted that this is the first study that compares an HIV-positive to an HIV-negative cohort in the developing world. HIV-positive dementia is probably the second most common cause of dementia worldwide, he said. HAART can greatly improve function, memory, and motor performance in patients with HIV dementia, but not necessarily back to normal. HIV dementia is now considered one of the potentially reversible dementias.


Christina Marra, MD, Professor of Neurology at the University of Washington in Seattle, also studies AIDS in Africa. Commenting on the International HIV Dementia Scale, she said that when the score is above 10, there is only a 20 percent chance of having dementia. ''But if you score less than 10, you may or may not have dementia, as the specificity is only 57 percent. Consequently, further evaluations are necessary.

I think it's probably valuable to have an easy-to-do test to use in order to be fairly confident that someone doesn't have dementia, Dr. Marra said. ''It will decrease the number of people that need more intensive evaluations. We need simple ways of assessing the neurological complications because resources are more limited in the developing world. We also need to know that once we've diagnosed these diseases, the treatments that work here, work there.

Most AIDS is in the developing world, and if we're going to make an impact, the numbers would say we have to do it in the developing world, she continued. We have a lot to learn about what's the best way to test for these disorders so we can truly identify and treat them. We also need to find ways to exclude other neurologic problems that might be confused with HIV dementia, and need to be treated differently. I think treating HIV is crucially important.

Dr. McArthur said investigators are refining the instrument and looking at cutoff scores. We've subsequently taken this scale to India, and it's begun to be used in a research project in Pune, India, he said. We haven't really compared the International HIV Dementia Scale to conventional neuropsychological measures in this country, but in populations where language is a barrier, it may have a role.


✓ In Uganda, a team of US investigators spearheaded a study to evaluate a rapid screening test to help non-neurologists determine the need for retroviral therapy in patients with HIV living in sub-Saharan Africa

Nerve Problems in the Feet

Today's video (Uploaded to YouTube by DrMichaelGrahamDPM on 1 Mar 2011) is not a good one if you've got a hangover I'm afraid, (with apologies to all reumatologists, neurologists and other specialists who will understand every word!). It's a 'silent movie' or slide show looking at the workings of the nerves in the feet and is fascinating if you wondered what the nerves. muscles and bones actually look like in the feet that are giving you such strange sensations or pain for much of the day. You may not understand much of the descriptive text but can mostly get the gist of what's going on. After six and a half minutes you can probably recognise the connections with neuropathy.
It's another world!

Nerves on the bottom of the foot have to make it through 2 tunnels in order to make it to the spine. Faulty foot mechanics and severely afftect these nerves. Watch this video to learn more about this very condition and to find out about what additional factors can taken to help.

I'm Pretty Excited For the Basco Battle

Henshin Grid provided some very exciting screen shots that could point out to a thrilling drama.  Here are some things that would be a good twist:

Captain Marvelous is injured.  Oh my.  How are they going to recover?  I pretty expect a thriller to that.  This fight is pretty personal considering the two had a past.

Basco laughs disturbingly as he gets control of the Gokai Galleon.  I wonder if any Sentai seniors will show up to help in the battle.  I guess this will monsterize him and I hope the writers monsterize him so much we'd say yeah after he dies.  So one episode isn't enough to cover the awesome evilness of Basco. Two parter is more like it and I hope he dies an epic death.

So Sally has defected from Basco or is it?  Apparently nobody wants to be the pet of a SOB like Basco. Basco's just been monsterized all the more and I'm loving it.

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