Happy Feet

It seems blatantly obvious but if neuropathy affects your feet and/or lower legs, it's vitally important to take regular care of them and yet it's so easy to forget, partly because you may not be feeling much down there and assume all is well.

Most peripheral neuropathy sufferers have some sort of problem in their feet; it often begins there. It can be as little as a numbness in one or more toes, to a total loss of feeling or excruciating pain and everything inbetween. The dangers presented by having very little feeling in part or all of your foot, again seem obvious but because you are so used to walking and feeling the ground with your feet, you don't think about it any more: unfortunately you can get a shock when something goes wrong.

It's important for HIV patients to avoid infections as a general rule but even more important if you haven't noticed an injury and a wound becomes infected.
The important thing is to make a habit of inspecting your feet and treating them well. Once again, a lack of feeling can make things like trimming toenails a risky operation (I have personal experience of cutting just too much nail away and being surprised to see the blood pouring out because I didn't feel any pain!) Treat your feet gently, they've got to carry you for the rest of your life. Better still, get a friend or partner to help you, especially with a stimulating or soothing massage after cleansing. Chiropodists are too expensive anyway.
For some good tips, read this article which takes its information from webmd.com. For source, see link below

Peripheral Neuropathy & Diabetes: Tips on Foot & Skin Care

When you have peripheral neuropathy caused by diabetes, your feet and skin need extra care and attention. Very small, repetitive injuries to the feet - like those caused by poorly fitting shoes - can lead to bigger problems, says Tom Elasy, MD, director of the Diabetes Clinic at Vanderbilt University in Nashville, Tenn. "Calluses, blisters, sores, infections, and foot ulcers may appear on numb areas of the foot because pressure or injury goes unnoticed. This happens simply because you can't feel the problem."

Also, people with uncontrolled diabetes have a hard time fighting infections. They may also have poor circulation that can lead to problems with healing. That means a minor cut in your skin could become an ulcer or develop into a serious infection. With good foot care, you can prevent most of these problems. (For diabetes here, read HIV - ed.)

Inspect Your Feet Daily

"We recommend that patients inspect their feet on a daily basis for cuts, any signs of redness, calluses, or blisters," says Elasy. "Using a little mirror can help. Also, it's important to moisturize. But avoid getting it between the toes, because that area is already moist. So extra moisture tends to cause fungal infections."

Caring for your feet is easy. It's best to do it when you are bathing or getting ready for bed. And remember that good foot care also involves getting medical help early if a problem develops. It's very important to see your doctor for treatment right away - to prevent serious complications like infections.

Here are good everyday habits to follow:

Inspect your feet daily. Wash your feet, and then thoroughly dry them. Use a handheld mirror (like a magnifying mirror) to inspect them. Look for blisters, cuts, cracks, dry skin, redness, tenderness, or sores on the skin and on the soles of your feet.
Powder in between your toes. This helps keep that moist skin dry and helps prevent fungal infections.
Rub lotion on your feet and legs to prevent dry cracked skin. But don't put lotion between your toes because of the risk of fungal infections.
Keep your nails trimmed. Use an emery board for filing so you don't hurt your skin.
Protect your feet. Always wear shoes or slippers to protect your feet from injury. Don't use a heating pad or hot water bottle to warm your feet.
Get checkups at the doctor. On each visit, make sure your doctor inspects your feet.
Don't use corn removers or other drugstore foot treatments. These can be harmful. Let your doctor treat your foot problems.
Wear properly fitted shoes. Also, wear socks at all times to prevent injury.

http://www.elderoptionsoftexas.com/article_diabetes_foot_skin_care.htm

It's a question of making a pleasure out of a necessity - try to take a pride in how your feet look and feel to the touch. Groom your nails so that they look healthy and clean and try out things like Arnica cream by massaging it in with smooth circular movements. You never know, you may restore both circulation and feeling in certain areas, or reduce pain and tingling. Either way, it is important to be aware of your feet in a way you never have before; it just makes sense.

Neuropathy Drugs

I've been asked more than once if I know of a good allround site which gives information about the drugs that are prescribed for neuropathic problems. There are many sites which cover this for HIV medication but far fewer for neuropathy.

It took a while but I think that the neuropathy page of drugs.com just about covers it all, with no hidden agendas (or Shopping Carts!).
I'll say it again; I refuse to advertise for commercial organisations but this site is so unbelievably useful, I think you'll agree, promoting it is a good thing!

Because of the many links, it's impossible to reproduce in a single post here but if you follow the link below, you'll find information concerning more or less, everything you want to know about neuropathy medications. Because we tend to be prescribed several drugs over the course of a neuropathy lifetime, it might be worth your while adding it to your favourites for future reference.

http://www.drugs.com/condition/peripheral-neuropathy.html

Radiculopathy Vs. Neuropathy

There is one condition that can easily be mistaken for peripheral neuropathy and vice versa because they both concern damaged nerves and that is radiculopathy (try saying that several times after a few drinks!). You may well have seen it mentioned in the course of your information searches regarding neuropathy. There are similarities and distinct differences and radiculopathy is actually regarded as a form of neuropathy, so how will you know which one fits your symptoms? The following article explains it much better than I can(see link below).

Radiculopathy Vs. Neuropathy
by Suzanne Mendjiwa

Components of the nervous system have extremely complex yet vital functions in the body. For instance, the central nervous system (CNS), which includes the spinal cord and the brain, acts as both the information processing and command center of the body. Nerves in the peripheral nervous system, on the other hand, carry messages from the CNS to the rest of the body. Regardless of their function, nerves are susceptible to various disorders, including neuropathy and radiculopathy. The latter have similarities and differences worth noting.

Neuropathy

The term neuropathy does not refer to a specific disease. Rather, it is a generic term that describes various disorders of the nervous system. Numerous categories of neuropathy exist, based on their clinical manifestations, as well as the location, function and specific types of the affected nerves. For instance, although the terms "neuropathy" and "peripheral neuropathy" are often used interchangeably, peripheral neuropathy actually refers to malfunctions of the nerves outside the brain and spinal cord. In contrast, radiculopathy is a disorder at or near the root of any nerve along the spine. Thus, radiculopathy is a type of neuropathy.

Radiculopathy

Medicine.net indicates that, although radiculopathy may occur in any area of the spine, lumbar and cervical radiculopathy are the most frequent manifestations of the disease. Lumbar radiculopathy affects nerves in the lower back, while cervical radiculopathy refers to disorders of nerves in the neck. Thoracic radiculopathy, which involves the middle portion of the spine, is less common, says Medicine.net. Radiculopathy may be associated with the following conditions: quadriplegia, or paralysis of all limbs and torso; paraplegia, or loss of function of the lower limbs; and sciatica, or sciatic nerve inflammation.

Causes

According to Robbins & Cotran Pathologic Basis of Disease, neuropathy may have a wide range of causes, including: traumatic injuries, tumors, toxins, certain drugs, inflammation, certain vitamin deficiencies, metabolic disorders, genetic defects, infections, auto-immune disorders, and systemic diseases, such as diabetes. Radiculopathy, on the other hand, generally results from nerve compression, irritation or inadequate blood supply. Possible causes include disk herniation, a bone spur from osteoarthritis, thickening ligaments, diabetes, tumor, infection and scoliosis, as well as degeneration or traumatic injury of the spine.

Symptoms

The most common symptoms for both neuropathy and radiculopathy are pain, numbness and tingling in the arms and/or legs. However, various symptoms may result from either disorder, depending on the nerves involved. Medicine.net notes, for instance, that radiculopathy patients are likely to experience the following: weakness, lower back pain that extends downward to a lower limb; middle back pain that spreads to the chest; or pain in fixed areas of the neck or back. In contrast, other types of neuropathy may become life-threatening, particularly when lung and heart function are affected.

Diagnosis

Diagnostic procedures for neuropathy and radiculopathy are similar, according to Medicine.net. Indeed, the first steps in the detection of both disorders are a thorough medical history and physical examination. More specifically, neurological and muscular strength tests can reveal gross nerve malfunction. Imaging studies may then help locate the nerve involved, while tests of electrical activity are designed to help uncover specific nerve damage.

Treatment

Medicine.net indicates that, in most cases, conservative options provide sufficient relief of radiculopathy symptoms within three months. Such options include avoiding strenuous movements of the neck and back; anti-inflammatory drugs; chiropractic or physical therapy. More severe cases may require epidural steroid injections, or even surgical intervention to release the compressed nerve.

Risk Factors/Prevention

Eliminating or controlling certain risk factors can help prevent neuropathy in general, and radiculopathy in particular. Controllable risk factors for neuropathy include exposure to environmental toxins, such as lead and arsenic; thiamine deficiency; deficiencies in vitamins B12, B6 and E; excessive alcohol consumption; and diabetes. Regarding radiculopathy, Medicine.net notes an increased risk with excessive strain on the spine, excessive weight and poor muscle conditioning.

Read more: http://www.ehow.com/about_6547527_radiculopathy-vs_-neuropathy.html#ixzz1TKJlyzqc

Can Turmeric help with neuropathy problems?

You may have occasionally come across Turmeric as being an alternative treatment for helping with neuropathy pain. It seems to be another one of those slightly vague, good for everything anti-oxidants, so in response to a mention on another forum, I decided to look it up and see if there's anything to it - after all, most people know it only as a well-known Indian spice. I can't say I'm 100% convinced by what I found (the research seems a little patchy) but I certainly wouldn't rule it out either. What do you think?

Turmeric

A member of the ginger family, turmeric works well as a seasoning for many recipes, but turmeric may have a number of health benefits as well. Turmeric contains curcumin, an antioxidant compound that may help reduce inflammation and aid in the treatment of digestion conditions. Turmeric may help reduce blood sugar levels. In a 2002 study, researchers at Annamalai University in India evaluated the effects of turmeric and the component curcumin on diabetic rats. They found that curcumin reduced blood sugar levels. Turmeric supplements, though they contain curcumin, did not have as significant effect as doses of curcumin alone.

Neuropathy Relevance

The study at Annamalai University used rats to evaluate the effects of turmeric and curcumin on blood sugar control. As of 2011, no study has evaluated the role of turmeric on human blood sugar levels. However, the rat-based information does show some promise in the possible help turmeric could provide diabetic patients. In controlling blood sugar levels, a diabetic has a decreased likelihood of having diabetes-related neuropathy.

In 2009, researchers in the Department of Neurobiology at the University of California-Davis Medical Center evaluated the role of curcumin, such as that found in turmeric, in relieving pain from diabetic neuropathy. The study used mice for test subjects and found the curcumin use resulted in a higher pain tolerance in the mice. At the conclusion of the study, researchers determined that curcumin may have some benefit in aiding neuropathy sufferers.

Considerations

Human studies have not concluded that turmeric will help neuropathy patients. However, these initial discoveries show promise, and you may want to talk with your doctor about whether turmeric supplements could offer some benefits to your condition. You should not begin using these supplements without first consulting your doctor, since turmeric use could interfere with medications or health conditions.

Read more: http://www.livestrong.com/article/490154-neuropathy-turmeric/#ixzz1TKkWlJ7C

And now some personal experiences of using Turmeric

Q. I've been clipping articles from your column for years. I checked them recently to find how to relieve severe lower back and hip pain. I used some turmeric on food, and thirty minutes later I noted an internal warming sensation in the affected back area and a reduction in pain. I later took turmeric capsules and completely cured all of the pain.

About a month later my wife suffered from severe pain and loss of the use of her left arm and hand. Just lightly touching certain areas caused her to cry out in pain. Years ago she suffered from shingles in that same arm. We therefore suspected that she had postherpetic neuralgia. Since this is an inflammation of the nerves, we decided to try turmeric.

A couple of hours later, on our way to our family doctor, my wife said that her arm felt hot, and the pain was not as severe. Our doctor wanted to schedule an MRI, but it was unnecessary after continued turmeric use. She was completely free of pain after about two weeks.

A. Turmeric has anti-inflammatory properties (Trends in Pharmacological Sciences, Feb. 2009). Readers have found that this yellow spice has helped with nerve pain, osteoarthritis and psoriasis.

http://www.peoplespharmacy.com/2010/06/24/turmeric-eased-nerve-pain/

Q. I read that turmeric could help relieve muscle pain, so I began taking three capsules each day for my fibromyalgia. The pain has eased somewhat, but the greatest benefit was that the neuropathy in my feet has almost entirely disappeared.

After two weeks I urged my sister, ten years younger than me and with a much more severe neuropathy problem, to try it. She began taking turmeric and is now almost completely pain free.

A. Neuropathy can manifest as numbness, tingling or pain in hands or feet. This kind of nerve disorder is notoriously hard to treat.

Turmeric has long been used in the traditional medical systems of Asia. Malaysian scientists confirmed last year that an extract of this bright yellow spice could quell nerve-related pain in rodents (Molecules, April 22, 2010). The anti-inflammatory activity of turmeric may also provide benefit.

http://www.peoplespharmacy.com/2011/03/13/turmeric-relieved-nerve-pain/

It may well be worth checking Turmeric (or curcumin) against your HIV meds - you never know if there is a counter indication. http://www.drugs.com/drug_interactions.php

And finally, this short segment gives advice about dosage and a warning about allergic reactions. This may well be worth following up. If anybody has personal experience of Turmeric, positive or negative, let us know.

Turmeric for neuropathy
- Turmeric is a powerful anti-inflammatory and anticancer spice which can be added to food or smoothies or taken in capsule form. Be sure to look for organic turmeric if taking in supplement form. A common recommendation for turmeric is 400mg, three times daily.

Some people may be allergic to turmeric so if you develop a rash, discontinue. Also, if you take the drug Warfarin, don't take turmeric.
http://www.path2healthyliving.com/NeuropathyTreatments.html

Fixing Nerve Damage

This study from John Hopkins Institute researchers is again aimed at diabetes patients (but by now you'll be used to that) and the conclusions suggest that the slow regeneration of blood vessels, cells and axons (single nerve cell extension)is a by-product of diabetes itself. In that case, is regeneration more successful for neuropathy patients with HIV; or even chemo patients with neuropathy?
There are two possible conclusions here: a) that we must never assume that neuropathy is a one size fits all disease and b) that maybe the John Hopkins people just haven't thought about comparing the findings of diabetes patients, to those of HIV patients having undergone the same research!

Either way, this article is written in a way that most of us can understand and shows what's being done to try to repair nerve damage and eventually, that will apply to us all, wherever your neuropathy comes from.

To Fix Diabetic Nerve Damage, Blood Vessels and Support Cells May Be the Real Targets of Treatment
ScienceDaily (June 24, 2011)

Blood vessels and supporting cells appear to be pivotal partners in repairing nerves ravaged by diabetic neuropathy, and nurturing their partnership with nerve cells might make the difference between success and failure in experimental efforts to regrow damaged nerves, Johns Hopkins researchers report in a new study.

About 20 percent of diabetics experience neuropathy, a painful tingling, burning or numbness in the hands and feet that reflects damage to nerves and sometimes leads to infections and amputation of the toes, fingers, hands and feet over time. Current treatments for diabetic neuropathy focus on relieving symptoms, but don't address the root cause by repairing nerve damage. Previous research has shown that nerve cells' long extensions, known as axons, regenerate slowly in diabetics, scuttling various experiments to regrow healthy nerves, explains study leader Michael Polydefkis, M.D., M.H.S., associate professor of neurology at the Johns Hopkins University School of Medicine.

Searching for the reasons behind this slow regeneration, Polydefkis, along with Johns Hopkins assistant professor of neurology Gigi Ebenezer, M.B.B.S., M.D., and their colleagues recruited 10 patients with diabetic neuropathy and 10 healthy people of similar ages and took tiny (3 millimeters) "punch" biopsies from the skin of each participant's thigh. Several months later, they took 4 mm biopsies from the same site to see how the nerves, blood vessels and nerve-supporting cells, called Schwann cells, were growing back into the healing biopsy site.

In both the neuropathy patients and the healthy individuals, results reported in the June issue of Brain showed that the first to grow into the healing skin were blood vessels, followed soon after by Schwann cells and then axons, which appeared to use the blood vessels as scaffolds. However, the entire process was significantly delayed for the neuropathy patients. Not only was axon regeneration slower compared to the healthy patients, as expected, but blood vessel growth rate was also slower, and fewer Schwann cells accompanied the growing axons into the healing skin.

"Our results suggest that regenerative abnormalities associated with diabetes are widespread," Polydefkis says. "They're not just affecting nerves -- they're also affecting blood vessel growth and Schwann cell proliferation."

Additionally, he says, the findings could explain why blood vessel-related problems, such as heart attacks and strokes, often accompany diabetes. Slowed regeneration of damaged blood vessels could contribute to these conditions as well, he explains.

Polydefkis says the findings provide potential new targets for treating neuropathy and vascular problems. By promoting blood vessel and Schwann cell growth, researchers might be able to speed up axon regeneration and successfully repair damaged nerves and blood vessels, potentially combating diabetic neuropathy and vascular complications simultaneously.

Story Source:
The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by Johns Hopkins Medical Institutions.

Acupressure for Neuropathy

Whether acupressure can help, or that this lady has all her facts straight, I'll leave for you to judge. This video takes you through the basics and as an extra help, the video transcript is shown below.

Acupressure For Neuropathy -- powered by ehow

Hi, I'm Hilary Talbott, Acupuncture Physician and Clinical Herbalist. Today, we will be discussing acupressure for treating neuropathy. Now, neuropathy is becoming quite common in our society because it's often the side effect of some from pharmaceuticals and it's also something that happens with age. As blood pressure, it doesn't meet the demands of our body or we become in, what we, in Chinese terms called blood deficient and have blood stasis where circulation actually slows down. So, neuropathy can affect the hands or the feet; most commonly I see it affect the feet especially in the elderly. And that can present a, a whole host of problems because if you can't feel your feet, then, you sometimes have trouble walking. And we all know that it can be a death sentence to fall and break a hip when we get older. So, this is an important symptom to control especially in the elderly. So, when I look at the legs and feet of someone with neuropathy, what I'm looking for is I'm looking for signs of blood stasis to show me that circulation has slowed down. And so you can see on our, our young model today doesn't have very many; but, she's got kind of these little spider veins, these little purple busted capillaries that show that circulation has been impeded at sometime. So, and a lot of times when you look at somebody, an elderly patient with neuropathy, their whole leg will be kind of filled with spider veins and purple and it's amazing to watch the transformation with some simple massage techniques. So today, I've got my handy dandy Chinese Po Sum On oil and this has a blend of herbs in it. But, one of the main herbs in it is cinnamon. Smells so good. And I like to use it because this cinnamon really kind of has an invigorating property on and helps restore circulation and blood flow as well as that kind of has a tingling effect. And a lot of times with neuropathy, there's kind of a numbness. They can't feel anything. So, when you use these oils daily with some basic massage techniques of sweeping, it really helps the person get back in touch with feeling in their legs which is really important. So, I'm just going to rub a little in my hands and gently sweep the leg up towards the trunk because really what's happening is the blood can't overcome gravity and come back up into the trunk and it get stuck in the leg. So, I want a motion of going up back into the trunk and you can go as far as going up the entire leg into the groin. You really want to concentrate on the vascular areas that are kind of engorged with blood and it doesn't take a lot of pressure. And it's kind of intuitive, so just looking for the areas that are filled with blood and just, just barely making and letting the sweeping motion and the lotion do their work. Now, this doesn't have to be cinnamon; but, you could use something like camphor or eucalyptus, just thinking invigoration. Something that when you smell, it kind of opens up your sinuses. It's going to do the same thing with the blood vessels. And then the other thing is, when we're thinking of talking about neuropathy in the elderly, you know, touch is just so important. So, just for a couple of minutes a day, if somebody else is massaging them, it gives them so many more benefits and just getting rid of simple neuropathy. A lot of times too, mineral deficiencies can be involved in this. So, it's important to make sure that you're taking a multivitamin or a food source that's packed with minerals and vitamins. Okay. So, as you can see that was pretty simple. There are lots of other points that we can use to aid in the treatment of neuropathy. So, I encourage you to seek out your local acupuncture physician and find out which points are right for you. I'm Hilary Talbott and that was acupuncture for neuropathy.

Read more: Acupressure For Neuropathy | eHow.com http://www.ehow.com/video_7753948_acupressure-neuropathy.html#ixzz1TEkgpRWs

Combination therapies for Neuropathy

If you search via Google: The importance of drug development for neuropathy, unless you are a medical specialist, you may well think that you've landed on another planet when you read the results! The first five pages consist of articles which are so scientifically complex, that the ordinary, unqualified, neuropathy-sufferer doesn't stand a chance of understanding what sort of progress is being made! What does emerge as being indisputable is the depressing fact that there is very little real understanding of why and how, neuropathic pain works, let alone finding an effective treatment.

We already know that there are more than one hundred potential causes of neuropathy; how it can be affected by a variety of other ailments and that everyone reacts differently to both tests and progression. Yet how is that any different to cancer, or even HIV and yet, given the right amount of publicity and money, significant progress has been made in treating both of those complex diseases?

Treatment up to now has been mainly aimed at relieving the symptoms and the discomfort or pain, which in the case of autonomic neuropathy for instance, can be a jigsaw in itself. This suggests that science is nowhere near addressing the damage to the nervous system itself. Okay, if that's the case, just tell us that in layman's terms and we'll understand that treatment is limited and as long as we're cautious and wary about being screwed by unscrupulous salesmen and take doctor's advice about the dangers, it's okay to explore the many alternative therapies that spring up all the time.

Having said all that, it seems that science is now moving in the direction that HIV eventually also had to do to achieve success - by using combination treatments and therapies. It seems logical, even though we understand that they're often holding their scientific wet thumbs in the air to test the wind.

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Two very important points before we go any further:
1) Always check for yourself, whether any drugs you are prescribed clash with your HIV regime - doctors don't always have the time, or can forget. A good site for checking your meds is http://www.drugs.com/drug_interactions.php or you could use: http://www.hiv-druginteractions.org/

2) Watch out for side effects, especially with combinations (they can sometimes be worse than the problem itself) - always report back to your doctor.
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Before we go on to the combinations, the following link is a list of the most commonly prescribed drugs for neuropathy. It's very useful and will explain what is being prescribed, in terms you can understand. It might be an idea to add it to your favourites for future reference.
http://www.drugs.com/condition/peripheral-neuropathy.html

The most frequently used combinations at the moment are:
Tramadol and Gabapentin (Neurontin); Oxycodone and Gabapentin and morphine and Gabapentin which are combinations of an opioid with an anticonvulsant. Pregabalin (Lyrica) can also be used instead of Gabapentin but Pregabalin is still an anticonvulsant.
Nortryptiline (tricyclic antidepressant) can be used in combination with an opioid (Tramadol or Oxycodone) or even, in some cases be added to the mix to make a triple therapy with an opioid and an anticonvulsant. It is often the case that the dosage of either or both of the individual drugs may be reduced when they are used in combination.

It all sounds very complicated but basically, you will generally begin any treatment with one drug at a time (monotherapy) and if none of the available drugs work, your doctor may offer combinations of two, or maybe even three, normally monotherapy drugs, to form a combination therapy. Remember, these treatments are still not curing anything, they are just meant to make the symptoms less difficult to live with.
Quite a few large scale studies have already been done, with generally encouraging results and more are happening all over the world, especially in Asia, though it has to be said that most are aimed at diabetics with neuropathy and HIV patients must watch out for drug clashes which may affect their HIV therapy.

These are conclusions of one such study to be found on: http://www.medscape.com/viewarticle/723244_9

Combination Therapy

An adequate trial of a single medication followed by titration to alleviate pain should be the first step in managing (diabetic) neuropathy. Managing adverse effects should be a continuous process throughout treatment. Drug tapering or discontinuation may be required if the adverse effects are intolerable. If a single drug therapy is ineffective, utilizing combination therapy may be the next step. This has been shown in the recent article published by Gilron et al. The authors concluded that gabapentin in combination with nortriptyline was more efficacious than either drug alone for the treatment of neuropathic pain. This article recommends the use of combination therapy with gabapentin and nortriptyline for patients who show a partial response to either drug alone. While further studies are needed to evaluate the use of combination therapy for treatment of neuropathic pain, the use of combination therapy is more widely acceptable by clinicians.

Hopefully combination therapies will become more sophisticated and will eventually make living with neuropathy much easier. However, with regards to finding a 'cure', it looks like that will still take some considerable time. Patience is something neuropathy sufferers know all about.

Infra-red treatment for neuropathy

I was wondering why HIV wasn't mentioned as being one of the contributing causes of neuropathy in this video...until I saw the name of the producers: Fox 31. Now I have to admit, I have no idea who Fox 31 are, or what their agendas (if any) may be but media companies with the name Fox are not famed for being particularly HIV-friendly to put it mildly. Apologies if I'm way off the mark here.

However, that's not the point; the video concerns infra-red, light treatment for neuropathy (apparently originally developed by NASA), which has been touched on earlier in the blog. It gives a visual demonstration of what this equipment is and how it works but as for answering serious questions as to whether it's just another gimmick or not, I'm not qualified to say. Anything that claims to be as effective at treating neuropathy as this does, immediately sets alarm bells clanging for me. However, maybe you know much more about it, so please tell everyone your opinions; especially if you have had experience of this sort of treatment or know someone who has.

The video is basically an extended advertisement for a Neuropathy Treatment Center, offering a service and normally I wouldn't consider posting it, or supporting commercial operations but evaluating the process in this case, may be more important than the organisation behind it. Besides that, it is explained in a low-key and factual way - there's no outward reason to mistrust anything that's said. I've never seen anything like this offered in our mainstream medical facilities although that doesn't mean to say it doesn't exist here and am very curious to know if it's effective in any way.
The ball's in your court - let us know what you think.

The Importance of Drug Development for Neuropathy

As time goes on and we survive longer, we tend to forget how destructive HIV has been and still is.

Today's post, is another powerfully written, personal account which speaks to everyone who has come into contact with HIV. It reminds us all where we've come from and how some have had easier journeys than others; something which does no harm at all every now and then but it also reinforces the need for more research and development when it comes to drugs to help treat both HIV and neuropathy. Ironically, the advance in HIV drug treatments has inadvertently meant an increase in neuropathy cases amongst HIV patients, if only because people are living much longer and being more frequently confronted with 'by-product' diseases. Neuropathy treatment itself however, is not making significant progress despite the ironically added bonus of having significant other patient groups involved (diabetes, cancer etc) and research into treatment for nerve damage, needs the same impulse that is consistently given to HIV medications!

HARRT Benefits - HIV/AIDS drugs saved my life!!

by Bradford McIntyre

From the time I was told I had “six months to live” by an AIDS specialist in 1985, I learned from other people infected with HIV and included supplements and complementary therapies. These kept me healthy and were responsible for allowing me to address health issues, boost my immune system and avoid going on HIV/AIDS medications for over a dozen years.

It was not that I did not get sick or need medical attention throughout the years, because I certainly did. There were countless doctors’ appointments, blood tests at the hospital to keep watch on how my body was reacting to having the virus and more times than I can count trying to fix whatever complications appeared. Throughout these years, large numbers of infected individuals went from a weakened immune system, to no immune system, to one sickness after another. With the advent of newer and better HIV/AIDS medications and a much broader understanding of this illness, individuals have been able to bounce back and have wellness restored with the aid of combination therapies. Equally, throughout everything, sick or well, complementary therapies are a mainstay to address: diarrhoea, nausea, neuropathy, irritated skin and rashes, wasting, fatigue, loss of appetite, immune-suppression and more, when it comes to living with HIV. We have learned a much broader understanding of this illness!

After approximately 13 years since diagnosis of infection with HIV, I did become seriously ill. In July of 1998, I developed pneumocystis-carinii-pneumonia, known as PCP. My health deteriorated and it looked as though I might die. My only recourse was to try an HIV/AIDS drug combination to boost my compromised immune system enough to fight off the pneumonia. That is exactly what happened. On December 1st, World AIDS DAY, 1998, I started my first ever HIV/AIDS drug combination treatment.

After just four weeks on the medication, my cd4 count of 40 went up a couple hundred points; eradicated the PCP and the viral load of several millions viral particles went down to thousands. With a reduced viral load, I could once again absorb nutrients. I regained the weight lost and started to strengthen my body through nutrition, exercise and complementary therapies.

People who knew me were very surprised that I started HIV/AIDS medications. They knew I was very involved in addressing HIV infection through alternative and complementary therapies. Although I was fortunate to have lived 13 years without highly active antiretroviral therapies (HARRT), I was not opposed to them. I was very successful addressing my health concerns without them, but I was aware of the benefits of pharmaceutical treatments and kept myself well informed. I knew there was a possibility of having to go on them one day. It was my hope that I could maintain good health without them, or by the time I needed them that they would be much improved from the drugs used in earlier years. It worked out for me in the long run. Without the drug combination therapy, I would not have survived. They saved my life!

Without the availability of these drugs, there would be far more suffering and deaths. Some individuals do not tolerate these medications, as they can be toxic. This is true of the treatments for many people who live with cancer and other illness, but you do not see activists denouncing the use of these life saving drugs. Myself and countless others have gone on to enjoy life, aided by these medications and it is very important to recognize the enormous benefits from the treatments available.

After two years, my HIV/AIDS drug combination began to fail. A genome test showed I was resistant to all the HIV/AIDS medications, even though my only usage consisted of AZT for 9 months (years earlier) and the current drug treatment. In 2000, with resistance to all existing HIV/AIDS medications, I enrolled in a drug study for a new protease inhibitor, Kaletra. Within the first four weeks on the drug my cd4 count climbed to 340 and my viral load was undetectable (less than 50 particles). In 2001, Kaletra was approved for use. Here it is 2004, and I am still taking Kaletra and I have a cd4 count of 470 and the virus is undetectable.

I recognize the significant accomplishments of science, medicine and the pharmaceutical companies and commend the work being done. Many are benefiting and I have seen people who were seriously ill regain a quality of health due to the HIV/AIDS treatments, myself included! I have seen people who were at one time in wheelchairs, recover and return to wellness due to new drug treatments and protease inhibitors. Weight gain, energy and hope have been restored in what might otherwise have meant death without these drugs. Initially, people did not have the treatment options we have today, but they led the way. Many people died in the process.

People offered themselves to science in the hope of finding a way to stay well, stay alive and move forward in treatment options. Without individuals engaged in studies and drug trials, we would not have the success in saving lives we have today. Many benefit and live longer due to the new drug treatments and protease inhibitors available. Obviously, we are moving forward in the development of more effective drug treatments!

Bradford McIntyre, HIV+ since 1984
Vancouver, B.C.
http://www.positivelypositive.ca/articles/harrt.html

Back to the weed

Although we've covered the benefits of Cannabis before on this blog, every now and then you come across a new angle or article which gives you a little bit more information to help your decision-making.
This article comes from The Washington Post and is too long to put into a single post here but is definitely worth clicking on the 'read more' link to learn about the many unforeseen qualities cannabis may have.

Form of medical marijuana won't get you high, but it's creating a buzz
By Karl Vick
Washington Post Staff Writer
Tuesday, June 1, 2010

WILLITS, CALIF. -- The one-armed man loitered in the waiting room for much of the morning, flipping through magazines with impressive dexterity, quietly waiting for word that the doctor would see him. Now.

William Courtney, MD, offered the chair to the right of the desk, the one occupied during regular office hours by a steady stream of patients seeking a doctor's recommendation for marijuana. In California, such a recommendation means an adult may grow, buy and smoke marijuana, all while remaining safely within the confines of state law.

The singular peculiarity of Courtney's "pot doc" practice here in Northern California is what he recommends: Don't smoke the stuff, he tells patients. Eat it.

Marijuana, he avers to every person who appears before him, turns out to be brimming with healing compounds. It won't get you high eaten raw, but juiced with a handful of carrots to cut the bitter taste, its leaves and buds may well have restored the health of his girlfriend, who had been given a diagnosis of lupus and a butcher's bill of other disorders that lab tests show have subsided. A local sufferer of Crohn's disease credits the plant with helping reverse the debilitating intestinal disorder. And published research from accredited laboratories suggests promise in preventing diabetes, heart disease, Alzheimer's, cancers and assorted maladies arising from chronic inflammation.

Yet almost no one knows any of this beyond a handful of scientists, including two at the National Institutes of Health who were sufficiently impressed that they joined a Nobel laureate in patenting a cannabis molecule. Courtney hands a copy of their U.S. Patent 6630507 to occupants of the chair, typically midway through a jargon-rich spiel that sometimes hits the patient right in the wheelhouse and sometimes goes whizzing overhead.

"I have no idea what he's talking about," said the auto mechanic who was in the chair a few minutes earlier, seeking relief for a broken vertebra and a bum knee. "Every once in a while he says something comprehensible."

But now, with no appointment and no right arm, someone was way ahead of him. "The last time we talked you said you had a source for the high-CBD material down by San Diego," the one-armed man began. He was dressed like a workingman but used the chemists' shorthand for cannabidiol, the most promising healing molecule, yet in most of the marijuana bought and sold these days, also the most elusive. CBD tends to show up least in plant strains that are richest in THC, the molecule that produces marijuana's high.

Courtney listened to the man, attentive yet guarded, the standard posture of a licensed medical practitioner operating on the far edge of the frontier where law, medicine and cannabis meet. It is a place in which he is used to being pretty much alone, and after a few minutes, Courtney sat upright and looked his patient in the eye.

"Are you wearing a wire?" the doctor asked.

Click here to read more...

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http://www.washingtonpost.com/wp-dyn/content/article/2010/05/31/AR2010053103231.html?wpisrc=nl_cuzhead

Take my neuropathy seriously...please!

This short personal account struck a chord with me because I've often felt exactly the same way as the author and I'm sure many of you have also. It comes from the Neuropathy Association's, Shared Stories and highlights one of neuropathy's most irritating characteristics: you quite often just don't look sick!

Then it becomes a question of being taken seriously and being believed. Most people feel guilty enough not being able to work or take an active part in society through illness but most have some physical signs and proof that all is not well - something the people around them can latch onto and feel sympathy for. In my case, in spite of all the extra things I've had over the years including the HIV, etc, etc...I look outwardly pretty healthy for my age! And yet I'm crippled by this wretched neuropathy that has brought my active life virtually to a halt.

Has that happened to you? Do you feel you always have to convince people that there really is something wrong with you? The trouble is, it's not just your employer, colleagues, social services, or friends and acquaintances who look at you as if you're trying to pull a fast one; it's the medical professionals as well! You very quickly learn to recognise scepticism in the eyes of a new doctor, when you stagger in without obvious injury and looking healthy and begin your tale of pain and misery. You start unconsciously wanting to exaggerate, just to make that person believe you. So when you meet a doctor who greets you with kindness and sympathy, and knows what you're going through, you feel like hugging them there and then! You just don't seem to take comfort in the fact that outwardly, you look fine, which is a plus...right? What's up with all that!

I Just Want My Life Back by K.S.

I was first diagnosed with fibromyalgia and they [my doctors] contributed my foot problems (numbness, pain, tingling, etc.) to the fibromylagia. After a couple of years of getting worse, a neurologist said it was peripheral neuropathy. So, I have constant pain all through body from the fibromyalgia, and my feet prevent me from doing exercises that may give me some relief from fibromyalgia pain.

I feel I always have to tell people about my condition because I do not look sick. My family has seen me living with this for years and know the pain I live with. But at times they still don't really understand how hard it is for me to just walk through the grocery store. I have to explain to people at my children’s school the reasons I cannot volunteer for many things; because to look at me, I look normal, except I struggle to walk normal because of the pain and numbness.

This has totally taken away my life. I can no longer work or even enjoy life anymore. I was denied disability because they do not understand it. At times, it would be easier if I looked as bad as I feel, then people would better understand. But honestly, if I looked as bad as the pain I live with, I would not want to even look into a mirror. So I try to be thankful that it does not destroy my outwardly appearance.

We do not know the cause of this. I have a lot of reactions to any medications used to treat this. I visit a pain clinic once a month to be treated for pain control. I just want my life back. Thank you

- K.S.

http://www.neuropathy.org/site/News2?page=NewsArticle&id=6987&news_iv_ctrl=1181

Living longer with the effects of HIV

Today's article makes slightly depressing reading. It talks about the problems many of us face as we live longer (under successful drug regimes) with HIV. It doesn't mention neuropathy specifically - you'll need to add it in the back of your mind as you read the article - it'll push you right over the edge! However, it is another way of letting you know you're not alone, which does give a tiny bit of comfort when your feet are killing you yet again.

I do take slight issue with the tone of the article. The well-meaning Nancy Travers may have worked with the gay community for ten years but the article comes over as a tad 'preachy'. It's stating the obvious that we need to take care of ourselves and try to live as healthy a life as possible and sometimes we just don't need to be reminded yet again, by a young lady, positively glowing with health (at least in her photo(see link). Then again, I may be guilty of judging a book by its cover and she may also have health problems - if so, sincere apologies!

However, anybody who tells us there are 'rules' for longevity, is sort of asking for trouble from HIV veterans who've seen a fair bit of life and are prepared to give up the health regime for that one reckless indulgence every now and then! The fact that the neuropathy prevents you even doing that most of the time, is not the point.
I'll shut up now and let you read the article:

Living With HIV For Older Americans

People living with HIV today are in a different world than those who were diagnosed even 15 years ago. Although infection with the HIV virus is still very serious, thanks to a healthy life style and proper medication, people who are HIV-positive can now lead largely normal lives for a much longer time. The combinations of drugs available today have allowed many people with HIV to fight infections and stay relatively healthy into old age. Being HIV positive isn't a death sentence anymore. There's a plethora of information out there on how to live well with HIV.

The same rules for longevity apply to people with HIV:

•Cultivate healthy eating habits
•Reduce stress
•Obey physicians' recommendations
•Quit smoking, drinking to excess and using drugs not prescribed by your doctor
•Keep immunizations current. They can help prevent infections
•Get adequate exercise, relaxation and sleep
•Ask your physician for further recommendations and additional help


There are a lot of people living with HIV today who are 60 and older. Unfortunately, they may feel older than their stated age because they are dealing with some of the same problems people much older would suffer. A survey of around 1,000 HIV-positive men and women ages 50 and above living in New York City determined that more than half had symptoms of depression, a much higher rate than others their age without HIV.In addition, most of them had other chronic medical conditions such as arthritis (31 percent), hepatitis (31 percent), neuropathy (30 percent) and high blood pressure (27 percent). Some 77 percent had two or more other conditions. About half had already progressed to AIDS before they'd even received the HIV diagnosis, the report found.Currently, about 27 percent of people with HIV are over 50. More than half will be by 2015, said the report. Due to the special needs of HIV-positive individuals, challenges are on the horizon for public health systems and organizations that serve seniors and people with HIV.

HIV can be a lonely road. According to one report, 70 percent of older Americans with HIV live alone. That's more than twice the rate of others their age. Only 15 percent live with a partner.One possible explanation is that many men and women conceal their condition from loved ones for fear of shame or rejection, whether real or imagined. AIDS- and HIV- related stigma and discrimination refer to intolerance, negative feelings, abuse and mistreatment directed at people living with either disease. This can result in being rejected by family, peers and the wider community; inferior treatment in healthcare and education situations; psychological deterioration; and can negatively impact testing and treatment. The lack of any social or family support increases the chances of requiring expensive outside care, such as home health aides or nursing homes, as HIV patients age.

Many older Americans with HIV are still sexually active, though, and should continue to practice safe sex. While 57 percent of older Americans with HIV said they revealed their HIV status to sexual partners, about 16 percent admitted that they didn't, the report found.

HIV treatment has come a long way in the past 25 years. Today, people with HIV can live long, relatively healthy lives. HIV treatment must now focus on controlling the virus as well as dealing with other health problems that can come with living longer with HIV (such as high blood pressure or diabetes-i.e. normal diseases of aging) and helping people have the best possible overall health. With the right treatment, anyone suffering from HIV can lead a full and long life. Living, and living well, with HIV means understanding all you can about your disease and treatment.

Nancy Travers, a Licensed Clinical Social Worker, specializes in all types of relationships; dating, existing relationships, family relationships, and relationships with friends and business relationships. She also helps her clients overcome anxiety and depression through talk therapy as well as through hypnosis. What sets her apart from many other counselors is that she has counseled in the gay/lesbian community for over 10 years. She also has experience counseling families with elder care issues. Nancy has been in practice for over 15 years and can provide you with the tools you need to approach dating and relationships with confidence. Visit her website at http://www.nancyscounselingcorner.com.


Article Source: http://EzineArticles.com/5601204

http://ezinearticles.com/?Living-With-HIV-For-Older-Americans&id=5601204

Chinese neuropathy treatment

I personally have learned from experience, to respect both traditional and modern Chinese medicine. It has helped me when Western medicine couldn’t, in an area not associated with either HIV or neuropathy. However, apart from acupuncture which is discussed elsewhere in this blog, Chinese medicine can apparently be helpful in treating neuropathy using other forms of medication.
Many people go to a Chinese doctor because they hear of a certain treatment or doctor by word of mouth and often because all other avenues have failed. Chinese doctors accept this ‘last resort’ approach to their work with good grace in the certain knowledge that their medicine is several thousand years old and pre-dates Western techniques by many centuries. Think about it; how many Chinese people are there? ‘Nuff said!

In recent years there has been much research in China into neuropathy, especially that caused by diabetes and the following article is the story of a small study in Guangdong but there are many more and as you might imagine, on a much larger scale.

What fascinates me is the description of how the body works according to Chinese medicine.

If you are thinking of consulting a Chinese practitioner, by all means check them out, or ask your own doctor’s opinion but don’t dismiss them out of hand; they may surprise you with what they can achieve.
At this point, it is essential to ask your Chinese physician during the intake consultation, if they have experience of HIV medications and if they are certain there will be no contra-indications with your current drug regime, to worry about. Chinese surgeries in big cities, are often much more aware of HIV and its problems than you might imagine and are also aware of progressions in HIV treatment; if not, then ask to be recommended to one that is.

Peripheral neuropathy - Chinese Medicine Update

In the last couple of years, numerous studies have been published in China on the Chinese medical treatment of peripheral neuropathy. In general, these studies suggest that peripheral neuropathy is due to a variable combination of 1) damp heat pouring downward causing 2) obstruction to the flow of qi and blood and 3) a qi and yin vacuity failing to nourish and moisten the sinews and vessels. This then results in burning pain, tingling, numbness, insensitivity, lack of strength, and muscular atrophy mostly in the lower extremities and mostly which is worse at night. According to Chinese medical theory, extremity pain is categorized as impediment condition (bi zheng), while numbness, insensitivity, and muscular atrophy fall under the category of wilting condition (wei zheng). Therefore, this condition is usually a combination of both impediment and wilting, and one of the famous formulas of Chinese medicine which treats both impediment and wilting when these conditions are due to or associated with damp heat pouring downward, is Er Miao San (Two Wonders Powder).

Er Miao San was created by the famous Yuan dynasty Chinese doctor, Zhu Dan-xi, and is found in his Dan Xi Xin Fa (Dan-xi's Heart [or Secret] Methods). In its standard form, it is comprised of two ingredients: Cortex Phellodendri (Huang Bai) and Rhizoma Atractylodis (Cang Zhu). Huang Bai is a bitter, cold medicinal which clears hest and dries dampness, while Cang Zhu is a bitter, warm medicinal which also aromatically transforms and dries dampness. In addition, Cang Zhu is known to relieve limb pain when that limb pain is associated with dampness. This simple, two-medicinal formula clears heat and dries dampness especially in the lower half of the body. When modified with added ingredients, it is used to treat a wide variety of rheumatological, dermatological, and gynecological complaints associated with damp heat below. In issue #1, 2003 of An Hui Zhong Yi Lin Chuang Za Zhi (The Clinical Journal of Anhui Chinese Medicine), Xie Min-hua and Wu Hong of Guangdong published an article titled, "The Treatment of 32 Cases of Diabetic Peripheral Neuropathy with Jia Wei Er Miao San (Added Flavors Two Wonders Powder) Combined with Externally Applied Chinese Medicinals." This article appeared on pages 14-15 of that journal, and, since it used such a famous standard Chinese medicinal formula, I believe it bears reporting below.

The 32 patients described in this article were a mixture of in- and out-patients from the authors' two hospitals in Huizhou, Guangdong.
Among these patients, there were 19 males and 13 females aged 43-61 years, with an average age of 49.5 years. The duration of peripheral neuropathy of these patients ranged from 15 days to 3.5 years, with an average disease duration of two years. Patients who had any other neurological disease were excluded from this study. The main clinical signs and symptoms of these patients were aching and pain in the tips of the extremities in 28 cases, decreased sensitivity in 25 cases, numbness and tingling in 22 cases, and lack of strength in the extremities in 21 cases.

Treatment method
To cut a long story short because it involves many Chinese ingredients (if you’ve ever been to a traditional Chinese doctor, you’ll know how complex their medicines can be), the patients were administered both oral drugs and a paste to be spread on the feet for two hours before going to bed (see link below for full details).

Treatment outcomes

Prior to the commencement of therapy, each patient was asked to rate four clinical parameters of their peripheral neuropathy: pain in the extremities, decrease in sensitivity, numbness and tingling, and lack of strength in the extremities. Responses were categorized into none, slight, moderate, and heavy or severe. After treatment, if any of these clinical symptoms improved by one degree or stage or more, the treatment was considered to have had an effect. If any symptom got worse by one or more degree or stage, this was considered an adverse reaction. Anything else was considered no effect. Based on these criteria, of the 28 cases who experienced extremity aching and pain, 25 got some effect, two got no effect, and one had an adverse reaction. Therefore, in terms of extremity aching and pain, the total amelioration rate was reported as 89.3%. In terms of decrease in skin sensitivity, out of the 25 patients who reported this symptom, 21 got some effect and four got no effect for a total amelioration rate of 84.0%. Of the 22 patients with numbness and tingling, 18 got some effect, three got no effect, and one had an adverse reaction, for a total amelioration rate of 81.8%. And finally, in terms of lack of strength in the extremities, of the 21 patients who reported this, 17 got some effect and four got no effect, for a total amelioration rate of 81.0%. In addition, mean nerve conduction tests from before to after treatment were markedly faster.

Discussion

According to Drs. Xie and Wu, the disease mechanisms of this condition are impediment and obstruction of the channels and vessels so that the qi and blood do not flow easily and smoothly. Since the blood vessels are not harmonious, there is tingling and numbness of the extremities and aching and pain. (This based on the Chinese medical statement of fact: "If there is pain, there is no free flow; if there is free flow, there is no pain.") If dampness is retained in the muscles and flesh, it obstructs and causes stagnation in the joints. This dampness obstructs the free flow of yang qi which backs up and becomes depressed, transforming into heat. This dampness and heat combine to form damp heat which blocks and obstructs the vessels and joints. This results in the qi and blood becoming depressed, stagnant, and not freely flowing. Therefore, Drs. Xie and Wu think that the appropriate treatment principles for this condition are to clear heat and eliminate dampness, nourish and quicken the blood, free the flow of the network vessels and stop pain. Consequently, within this formula, Huang Bai and Cang Zhu clear heat and dry dampness. Fu Ling and Yi Yi Ren fortify the spleen and percolate dampness. Dan Shen, Chi Shao, and Di Long nourish and quicken the blood, transform stasis and free the flow of the network vessels. Bai Zhu and Chuan Xiong supplement and boost the qi and blood. When the qi moves, the blood moves; and when there is free flow, there is no pain. The Chinese medicinals applied to Yong Quan strengthen the promotion of the flow of qi and blood through the channels and vessels of the lower extremities and thus help the internally administered medicinals do their job. In fact, it is my own clinical experience that the simultaneous external treatment of peripheral neuropathy, whether by herbal soaks, compresses, poultices, or acupuncture-moxibustion, definitely enhances the outcomes of internally administered Chinese medicinals. Since this external application uses a Chinese herbal paste applied for two hours before bed, it is relatively cheap, easy, and not very messy.

http://findarticles.com/p/articles/mi_m0ISW/is_241-242/ai_107201244/

There is no harm in asking, right? ...and if you're at your wits' end because nobody seems to be able to help you - the Chinese just might.

The problem with Statins

You have probably heard of Statins. Statin drugs work by blocking a key enzyme in the production of cholesterol. Cholesterol is a natural product of the liver and in the right amounts does not pose a problem to the body. The body, however, sometimes produces too much cholesterol and that is often caused by poor dietary choices (you know what you eat!).

Statin drugs block the enzyme linked to the liver’s cholesterol production, thus inhibiting the liver’s ability to produce LDL. Your LDL cholesterol levels will often be measured in a standard HIV blood test and you may have heard that LDL levels should be lower and HDL cholesterol levels should be higher. Statin drugs can achieve this for people with cholesterol problems. Studies have also shown that statin drugs can help the body reabsorb cholesterol that has accumulated on the artery walls.

As HIV patients we have to be more aware of our cholesterol levels than most. HIV patients are at a higher risk for cardiovascular disease in part due to lipid abnormalities that can occur with the use of certain antiretroviral therapies so Statin drugs may be prescribed to help maintain healthy cholesterol levels.

However... Statins themselves can cause Neuropathy!

Time to talk to the doctor again, if you are advised to take these drugs. If you don't already have neuropathy, there isn't too much risk until you begin to show symptoms but if you already have neuropathic problems, it's important to discuss the consequences of statin use with your doctor. It's also important to realise that statins can have other side effects too; especially muscle pain or weakness. Sometimes just one more side effect can be one too many for the long-suffering HIV patient. Always ask - there may be an alternative available.

The following article is from Science Daily: http://www.sciencedaily.com/releases/2002/05/020514075710.htm
from the American Academy of Neurology.

Statin Drugs May Increase Risk Of Peripheral Neuropathy

Statin drugs can increase the risk of developing peripheral neuropathy, according to a study published in the May 14 issue of Neurology, the scientific journal of the American Academy of Neurology.

Peripheral neuropathy results from damage to the peripheral nerves and causes weakness, numbness and pain in the hands and feet. Statin drugs are prescribed for millions of Americans to lower cholesterol.

People taking statins were 14 times more likely to develop peripheral neuropathy than people who were not taking statins, according to the Danish study. However, the overall risk of developing neuropathy is rare, said study author David Gaist, MD, PhD, of the University of Southern Denmark in Odense

"The positive benefits of statins, particularly on reducing the risk of heart disease, far outweigh the potential risk of developing neuropathy," Gaist said. "These findings shouldn't affect doctor or patient decisions to start using statins. But if people who take statins develop neuropathy symptoms, they should talk with their doctor, who may reconsider the use of statins."

For the population-based study, the researchers used a patient registry to identify all of the first-time cases of peripheral neuropathy with no known cause (such as diabetes) in Funen County, Denmark, over a five-year period. Each case was matched to 25 people of the same age and sex with no neuropathy as a control group. The use of statins was then determined for each group.

They identified 166 cases of first-time neuropathy with no known cause. Of those, 35 had a definite diagnosis, 54 were probable cases and 77 were possible cases. Nine of the people with neuropathy had taken statins. They had taken statins for an average of 2.8 years.

For those with a definite diagnosis of neuropathy, the statin users' risk of developing neuropathy was 16 times higher than for the control group. When all cases of neuropathy were taken into account, the statin users' risk of developing neuropathy was four times higher than the control group's risk. Taking statins for longer periods of time and taking higher doses of them increased the risk of developing neuropathy.

Statins lower levels of low-density lipoprotein (LDL) cholesterol by blocking the production of a liver enzyme used by the body to make cholesterol.

For more information about the American Academy of Neurology, visit its web site at http://www.aan.com.

Botox: Kill or Cure?

When I first saw Botox mentioned as an effective treatment for neuropathic pain; I had to laugh; 'What will they think of next!' Then I saw it appearing several times in lists of treatments and realised that it's no joke - people seriously consider Botox as an alternative! Then you start searching for corroborative evidence to see if there's any science behind the theory. The problem is that most of the articles on the subject are written by private clinics, or practices offering it as an alternative and like all advertising,you believe every word at your peril.

Let's look at the facts:
Botox, botulinum Toxin Type A (BoNTA):it seems as if it's being used for something different every day. There are both cosmetic and medical applications for it. In the right hands, Botox is claimed to be very helpful; in the wrong hands, it can be disastrous. If you're considering Botox treatments, don't hesitate to ask how much experience your doctor has with Botox administration.
Botox is a product of botulinum toxin, a bacterium found in food poisoning. and theoretically, works to relieve pain by blocking muscle contractions.

The first article comes from the Atlanta Medical Day Spa and Surgery Center (see link below) and here the facts are confirmed by other sites.

Scientist and researchers are still trying to understand the foundation of the biological processes that are responsible for diabetic neuropathic pain. In turn, the treatments being used now for this ailment are just not cutting it. But recent research with Botox shows evidence that suggests that botulinum toxin type A may not only stall the discharge of acetylcholine at the neuromuscular junctions, but also amend afferent sensory fiber firing, which leads to relieving neuropathic pain.

The method used for this study was a double blind crossover trial of intradermal BoNT/A for diabetic pain in 20 patients and was conducted to evaluate the effectiveness. The results were very surprising. The scientist found a significant decline in visual analog scale (VAS) of pain by 0.89 +/- 1.11 at 1 week, 2.32 +/- 2.29 at 4 weeks, 2.34 +/- 2.57 at 8 weeks, and 2.54 +/- 2.49 at 12 weeks after injection in the BoNT/A group, as compared to the relevant findings for a placebo group of 0.40 +/- 1.19, -0.12 +/- 2.03, 0.43 +/- 1.63, and 0.54 +/- 1.58 at the same time points (p < 0.06). Within the BoNT/A group, 45.5% of the people being tested experienced a drop of VAS >/=4 within 3 months after innoculation. The group who were placebo had no such affect.

To put this into layman terms, the study showed that Botox (botulinum toxin type A) significantly reduced the occurrences of diabetic neuropathic pain and also improved the patient’s ability to sleep.

http://www.atlantamedicaldayspa.com/Botox_and_Diabetic_Neuropathy.asp


A Taiwanese team led by a Dr.Chaur-Jong Hu, did the following interesting research: (see link below)

People with diabetes often suffer from chronic foot pain because of nerve damage, but relief may be at hand. Taiwanese doctors have shown that the pain can be reduced substantially by injections of botulinum toxin type A -- better known as Botox -- into the skin on top of the foot.

Dr. Chaur-Jong Hu, at Taipei Medical University, and associates tested the treatment in 18 patients with type 2 diabetes who had nerve-related pain in both feet.
The participants were randomly assigned to get injections of Botox or saline, then 12 weeks later crossed over to receive the opposite treatment.
A local anaesthetic gel was applied first, and then the injections were administered into the skin (rather than into muscles) at 12 sites across the top of the foot, the team explains in the medical journal Neurology.
At the start of the study, the average pain score on a scale of 0-10 points was 6.36. There were significant differences in the decrease in pain scores between the Botox and saline injections during each 12-week period.
Specifically, at 12 weeks, the score was reduced by 2.53 points with Botox injections compared with 0.53 points with the saline injections.
Moreover, 44 percent of the subjects had a reduction of at least 3 points in their pain score within 12 weeks after the Botox injections.
An added benefit was that patients are able to sleep much better after the treatment.

Hu's team concludes that intradermal Botox injections "are an effective and safe method of relieving diabetic neuropathic pain in the feet." However, "the detailed underlying mechanisms, optimal dosage, and precise course of therapy require further evaluation."

http://www.podiatry-arena.com/podiatry-forum/showthread.php?t=29526

And a Dr B. Gibson offered the following opinion (see link below):

Botox For Diabetic Nerve Pain – Dr Brandt R Gibson

In a recent study found in Neurology (28 April 2009), a group of scientists tested the use of injections of botulinum toxin type A—better known as Botox— into the skin on top of the foot to treat neuropathy pain. In this study, 44% were noted to have significant improvement of their pain after multiple treatments with botox. The question is whether this is a good idea.

Neuropathy pain is problematic and often difficult to treat. For years, people have been told that no treatment is available. If this were truly the case, Botox would be a good option. If it is typical Botox, however, it would require recurrent treatments throughout life to maintain the relief. And there is also a large concern for risks of injecting this substance into the skin of a diabetic without normal nerve feeling.

http://mydiabeticfoot.blogspot.com/2009/05/botox-for-diabetic-nerve-pain.html

And the following is just one of many reactions to be found in the forums; both for and against:

"I unfortunately found out the hard way about all the severe problems with botox. They use botox for a localized peripheral neuropathy since when a nerve is injured it causes severe pain but when it is completely destroyed there is no pain at all. The hopes is it will destruct the nerve more and the pain will cease. Although if it gets in your blood stream it can cause neuropathy all over your body, just check the package insert. It is the most potent neurotoxin known to man and by definition destructs nerves. I would avoid this treatment if at all possible, it could really set you up for a worse nightmare. I am living that nightmare every day for the past three years."

There seems to be enough food for thought but like everything else, the individual must make up his or her own mind about Botox. There are independent research studies popping up all over the place but larger and more verifiable studies seem to be needed.

It seems logical that the first step must be a discussion with any doctor who is both qualified in the field and is prepared to talk to you. If you can't find an independent medical opinion, it doesn't seem wise to go any further. Botox is no aspirin preparation! Even if you want to regain your lost youth and use Botox in the 'normal' way; or are using it to counter the effects of lipoatrophy, you need to be informed exactly what you're doing and what the risks are. This is a different Botox application to that used for cosmetic purposes - for a start it's injected differently - under the skin and not into the muscle. And all this doesn't take the cost into consideration - it won't be cheap! However, if it is found to be a valid treatment, it will eventually become common practise and eventually be covered by basic insurances (pigs may have long since learned to fly!!).

Having said all that, it's very unfair to let personal opinion override the facts and I think everybody will be interested in other people's experiences and ideas, so please use the Contact form or the Comment button under the post to let us know what you think.

Neuropathy- not sexy enough!

It's a well-known fact that drug companies are constantly searching for celebrities to either promote a drug, or a disease, or both. In this respect, neuropathy just ain't sexy! I've searched the internet in vain, for lists of neuropathy sufferers amongst the rich and famous - they must be there but if so they're not publicising the fact and then imagine how difficult it will be to find an HIV+ role model with neuropathy! The point is, it can make a great deal of financial difference, as this article by Geoffrey Cowley and Karen Springen in Newsweek explains. So come on famous neuropathy sufferers...out yourselves! We need your drug company's investment!

Trivia :This subject was actually the material used in an English exam for Dutch students in 2007

The bad news is there is no cure available because no celebrities have your disease!

CELEBRITY PITCH

Unless you suffer from peripheral neuropathy, chances are you’ve never heard of it. PN is a condition in which damaged nerves cause debilitating pain and numbness in the extremities. It affects as many as 20 million people in the United States alone, including nearly 10 percent of all Medicare patients. So why don’t we hear more about it? What does a condition like ALS (Lou Gehrig’s disease) have that PN doesn’t? Well, Lou Gehrig, for one thing. Stephen Hawking, for another.

When Ben Stiller hosts a gala for Project ALS, people like George Clooney, Matthew Broderick and Sarah Jessica Parker show up. The Neuropathy Association has yet to snag even a soap-opera star. “Johnny Cash, who suffered from it, actually said he would do a spot for us once he got better,” says Dr. Norman Latov, the association’s medical director. “But he died.”

For better or worse, star power is transforming health and medicine. Movie actors now dominate congressional hearings on research policy, and drug companies compete to link famous names to lucrative afflictions. Bob Dole has been trotted out to discuss his erectile difficulties; Debbie Reynolds, her urinary incontinence; American football icon Terry Bradshaw, his struggle with depression; Lance Armstrong, his triumph over testicular cancer. Not that there’s anything wrong with that.

Celebrities can raise awareness, shatter stigmas and promote healthy behaviour. But when their confessions are prompted by seven-figure contracts and orchestrated by corporate marketers, some scepticism is indicated. In certain cases, says University of Pennsylvania bioethicist Arthur Caplan, the celebrity pitch is “just a fancy form of prostitution.”
No one would have said that a decade ago. Drug companies didn’t need sitcom stars back in 1991, says Dr. Leon Rosenberg, a former chief scientific officer for Bristol-Myers Squibb. “If you got a drug approved, you depended on physicians to improve sales and market share.” But physicians no longer hold all the cards.

With the rise of health activism in the 1990s, and the growth of the Internet, patients gained far more say in their own treatment. They’re now consumers of care, not passive recipients – and the medical industry has strong incentives to reach out to them. That’s why celebrity testimonials “have become a big business,” says Barry Greenberg of Celebrity Connection, a Los Angeles celebrity brokerage that matches stars with sponsors according to their medical conditions. “I wouldn’t want to be the pharmaceutical guy who stands up at a meeting and says, ‘You know what? The companies to the left and the right of us are all using celebrities, but I think we’ll pass’.” Unlike ads for cars or dog food, celebrity drug promotions are presented as awareness campaigns.

“Talk to your doctor,” goes the refrain. “This condition is treatable.” The pitchman may stick to that message (enough said if there’s only one treatment), but the sponsor often gets a special nod. “My treatment included three drugs made by Bristol-Myers Squibb, the world’s leader in cancer research and development,” Lance Armstrong says in publicity material for his recent “Tour of Hope.” The tour was billed as an effort to “inspire and inform the public about the importance of participating in cancer research.” It also netted Armstrong more than $2 million from Bristol- Myers Squibb, according to news reports. (Neither the company nor Armstrong’s agent would discuss his fee when we approached them about this.)

Stars like Christopher Reeve and Michael J. Fox have won praise for educating policymakers about particular afflictions. But when funds are finite, a campaign that boosts support for one disease reduces it for another. Suppose Julia Roberts persuades Congress to fund more research on Rett syndrome (a rare condition she spoke out for in 2002).

“Certainly there’s research to be done,” says Dr. Gilbert Ross of the American Council on Science and Health. “But is the money going to be diverted from tobacco education? Is it going to be diverted from diabetes research?” If so, the net effect on public health would probably be negative. As medicine sheds its paternalism, celebrities may gain even greater stature as health advisers. For the rest of us, the challenge is not to take them too seriously.

Geoffrey Cowley and Karen Springen: Newsweek

Infra-Red treatment for Neuropathy?

I have no reason to doubt the good doctor and his claims for infra-red light treatment but if this is so miraculously successful as claimed, why isn't every neurologist on the planet throwing away his or her prescription pads? He claims that the treatment 'calms the nerves down' but that seems just a little too simple to my uneducated mind. I strongly feel that I need to see the results of large scale test groups and be told by my neurologist and/or HIV specialist that this is a realistic option. Don't get me wrong, I'm open to believing anything and am willing to try alternative treatments, especially if they're going to help me personally but this leaves me feeling more than a little unsure.
Has anybody had this treatment? Was it successful or not? Where did you go to get it? Please let us know your own experiences, positive or negative.

5 Tips for Handling Pain

As a follow-up to yesterday's post, Tim Murphy gives you five useful suggestions for dealing with chronic pain. These can't be the only possibilities around and I'm sure you have your own hints and tips for getting through the day. The challenge is for you to come up with some more and share them with us all. Please use the contact form (click the Contact button above this post) to do it, or leave a comment (underneath the post).

Win the Pain Game by Tim Murphy

Hurting? These tips can help.

BUILD YOUR PAIN-FIGHTING TEAM

You need a primary-care doc who takes your pain seriously and will work with you to find drug or non-drug solutions—possibly including referral to a pain center. If your doctor pooh-poohs your pain (or gives up on it while you’re still hurting), find a new one!

KEEP A PAIN DIARY

Tracking your pain (on a 0 to 10 scale) throughout the day, over several days, 
can give you a sense of control. It can also create a picture of when your pain ebbs and flows—and it’s a great tool to bring to pain doctors. Google “Pain Diary” to find several print-and-use versions online.

TRY SIMPLE THINGS

Naps, light stretching or exercise, hot baths, hot tea, work breaks, breathing, meditation and prayer can all give you “pain breaks” throughout the day. So can your favorite dumb TV show!

BALANCE PERSISTANCE AND ACCEPTANCE

You don’t have to live with pain but you probably can’t banish it overnight. Balance fighting pain with accepting it, because panicking just makes it worse. Do what you can do every day and let go of the rest. “There are days I get angry and depressed,” says 15-year chronic pain survivor Betsy Luz Correa (43), “...and days 
I say, ‘I feel, so I know I’m alive.’”

BE SMART ABOUT USING PAIN MEDS

Pain meds can be powerful and effective long-term, but they can easily be abused, especially if you have a substance-use history. “Don’t wait to take your meds until you’re so uncomfortable you can’t function,” says Mark Cichocki, RN. “But don’t self-diagnose and self-medicate.” Get Doc’s help.