Thursday 30 June 2011

Support for the Feet

Anyone who has neuropathy problems in their feet knows exactly what this post is talking about. You do end up walking differently,either because you can't feel parts of your feet anymore, or they're so painful you invent a sort of 'self-protection' walk for yourself. Quite often it's not until somebody asks, "Why are you walking like that?" or starts making Monty Python, 'Ministry of Funny Walks' jokes, that you realise what you are subconsciously doing. Of course, it's absolutely no joke and it's very important that we take any measures necessary not to fall, or damage things further.
The problem is that by adjusting our walks, we aren't doing our feet any favours and there are plenty of bones, muscles and nerves in the feet to make your life miserable if you damage them. For that reason alone, investing in the right shoes or in-soles, to give as much support as possible, has to be a wise move. Dr. Scholl won't be available in every country but there will probably be an equivalent, or at least an orthopaedic practitioner/retailer who can make shoes to measure. Buying from the Internet is probably not a good idea because of the personal attention needed - everybody's neuropathic needs are different. This is another helpful post by Canadian, Bob Leahy, writing for positivelite.com

Good news (I think) for relieving that hurting feeling from peripheral neuropathy- affected feet
Bob Leahy checks out Dr Scholl’s Foot Mapping Technology and Custom Fit Orthotic Inserts

So regular readers will know my feet are a mess, the product of peripheral neuropathy caused perhaps by the prescribed drugs I take or have taken, perhaps by HIV itself. I’ve recounted here more than once how this side-effect induced pain in the feet has advanced so that it's hard to get it under control. Firstly my healthcare team has withdrawn Truvada from my five-drug combo and secondly they have added Gabapentin to the mix.

For my part, I have invested in New Balance brand shoes which I wear most of the time – they have a lot of cushioning, come in wide fittings, and are probably the most comfortable shoes I’ve ever owned. But they just can’t stave off the affects of neuropathy. In my case, I walk differently when my feet are hurting, which in turn eventually makes your lower-back hurt and turns you in to one miserable SOB.

So I was definitely in the market for alternative solutions.

Dr Scholls “Orthotic Centre” first caught my eye in our local Wal-Mart. I saw one again at Costco last week and decided to give it a try. It’s a fearsome looking shoulder-high kiosk with a platform you stand on, having removed your shoes. There are two handles to hold on to. A computer screen tells you what to do. Lean forward. Raise one leg and lean forward. Raise the other leg and lean forward. The machine meanwhile is mapping the pressure points on the underside of your feet. The result is a customized recommendation for one particular smodel of Dr Scholl’s orthotic inserts, of which there are many.

The technology behind the kiosk as well as what goes in to the three-layered inserts is described here.

The kiosk contains a supply of the inserts in all the various fits that the computer might recommend. My test resulted in a recommendation for the CF340 model which provides extra-good support for the arches. I know mine had suffered badly though having to walk flat-footed because of the neuropathy, in effect taking pressure off my toes. The inserts aren’t cheap – at Costco they are $70, for which you get two pairs, which realistically you probably need. But that $70 price compares with the hundreds of dollars you would pay for custom-fitted inserts elsewhere. It seemed well worth a try. Besides, the Wal-Mart reviews (an authoritative source if ever there was one, LOL) are pretty glowing.

Now to the important question: do they work? The answer is that based on just two days experience I would say yes. They certainly seem to make your feet feel more comfortable when standing or walking, providing support where you need it (arches) and cushioning elsewhere (heel and toes.) It’s true they do occupy space inside your shoes, so the shoes appear tighter, and that may not work well for some people. Also your first outing in them will almost certainly feel a bit strange: it feels as if there is something balled up under your arches which shouldn’t be there – a sock or something. Also returning to more correct walking form tests neglected leg and back muscles, so you might feel sore at first until your body adjusts.

To be fair, I haven’t tested these inserts long enough to fully evaluate them as an antidote to the debilitating impact of peripheral neuropathy. And the benefits I’m feeling now may in fact be at least partly responsible to the changes in my drug regime I referred to earlier. So it’s hard to judge. But let’s say right now I’m most favourably impressed by this product.

I think what it boils down to is that I’m seeing that the pain from peripheral neuropathy benefits from being attacked on several fronts. Prescription drugs might work, over the counter pain killers might work, dropping troublesome drugs from your regime might work, even acupuncture might work. But you also have to take measures which are kind to your feet. My take is that Dr Scholl’s Custom Fit orthotic inserts might do just that. So yes, I’m a believer.


Wednesday 29 June 2011

An explanation of various treatments for neuropathy (Warning! It ain't gonna go viral on YouTube!)

We're going to drop in on the 2006, Rare Neuroimmunologic Disorders Symposium to listen to and watch a talk given by Joanne Lynn MD. For the first two and a half minutes you may well wonder why, because the video takes some time to get to the point, or at least the points that are relevant to us. Apart from that, the good lady is not exactly the most inspiring speaker to listen to but stay with it because there is so much useful information and explanation which is specific to our problems. Apart from that, the slides that are shown, explain the difficult vocabulary that would normally go in one ear and out of the other.

You must remember that this is a medical professional talking to other medical professionals and therefore, there aren't very many fireworks to keep your attention but it's worth the effort. I've watched this three times and have learned something new and useful each time.

You can read the transcript of the video on: http://www.myelitis.org/newsletters/v7n2/newsletter7-2-02.htm
It helps!

Tuesday 28 June 2011

Pain Hurts!

This article is from The Pain Web (see link below) which is a British website for health professionals dealing in research, assessment and treatment of pain. It is written by a Dr Chris Wells and explains how and why we feel pain and how new ideas for treatment are constantly in development. It has been slightly edited to exclude paragraphs which would be incomprehensible to non-medical readers.

Neuropathic Pain, Development & Treatment

Pain hurts! Recent functional Magnetic Resonance Imaging (fMRI) shows that most people who complain of chronic pain have very significant activation of part of the brain which lights up as a result of acute pain from experimental injury. It is now accepted by scientists and pain relief specialists that chronic pain is a condition in its own right and is often mediated by changes within the central nervous system, leading to activity in the limbic system (a set of brain structures responsible for controlling various functions in the body.) which produces an unpleasant sensory and emotional disturbance. The amount of physical insult needed to promote unpleasant pain diminishes with chronicity so that patients experience both hyperalgesia, that is, severe pain on being provoked with normally mildly painful stimuli, and allodynia, which is pain being produced by normally non-painful stimuli, such as stroking or touching. We know and see these events in conditions such as post-herpetic neuralgia and post nerve injury, but it is becoming increasingly clear that these phenomena also occur in some patients with chronic back pain, fibromyalgia and similar chronic conditions.

Of course there are still those who malinger, that is, consciously complain of pain when none exists, in order to receive financial advantage, sign off work and the like, and it is difficult to distinguish sometimes between these and the genuine chronic pain sufferer, but just because there is no significant amount of physical disease at the time of examination, this does not mean that the patient is not experiencing real pain. The aforementioned fMRI shows that patients who have pain as a result of psychological and psychiatric disturbances (for example, depression or somatoform disorders) also feel and experience disturbances in the same part of their brain as the acute pain sufferer, the limbic system; ie, they are suffering from pain.

The limbic system not only experiences pain but also handles fear, anxiety, sleep, punishment and autonomic changes. It affects tension, which in turn affects the intensity of pain. Recent studies on antidepressants show that these produce regrowth of parts of the limbic system which have degenerated because of depression, further cementing the relationship between pain and depression and the response of pain to antidepressants. The complex nature of the sensation of pain was first appreciated by Melzack and Wall, who described the gate control theory of pain in the late '70s. At first their work was contested, but there has been gradual appreciation that pain is greatly attenuated both in the spinal cord and in the brain, and if there is lack of attenuation can lead to very severe and unremitting pain in the absence of significant nociception (the ability to feel pain, caused by stimulation of a nociceptor - the sensor of pain).

In the peripheral nervous system, if there is nerve damage, damaged axons sprout and form collateral nerve endings and areas which can be damaged or stimulated with light touch. Sodium channels become over-active and nociceptors become sensitised. Sleeping nociceptors, which are usually inert, awaken; basal cell firing increases, wallerian degeneration occurs and sympathetic fibres invade the dorsal root ganglia and sensitise the gate allowing the throughput of pain.

It is not generally realised that pain causes greater negative effects on the quality of life than many other conditions. A report by Sprangers et al in the Journal of Clinical Epidemiology (Sprangers et al, 2000) reports quality of life more affected by musculo-skeletal conditions than renal disease, cerebro-vascular, neurological, gastro-intestinal and even cancer. Pain affects every aspect of a human's life, mood, activity, sleep, independence, fitness, social life and family life. Chronic pain patients become physically and psychologically impaired, overweight, unfit, depressed and anxious. They become socially disadvantaged and lose social contacts.

The cost of pain to the economy is immense. Not only is there a direct cost to the family (estimated at over £10,000 per year) but there is also a cost to the Health Service (£6,000,000,000 per year) as well as social security, unemployment benefits and the like (Sleed and Eccleston,2005).

Pain treatments for neuropathic pain. The most effective treatments for neuropathic pain have been shown to be tricyclic antidepressants (NNT = 2) and opioids (NNT = 2). Pregabalin and Gabapentin come out with an NNT of about 4. Lidoderm patches, which will become available in the UK next year, have a NNT of 2 to 4. Tramadol has a NNT of 4; Capsaicin, which will also be available as a patch in the UK before long, has a NNT of 6 and SSRIs have a NNT of 6+. All of these are good treatments.

However, of course the problem here is one of side-effects. Many of these drugs have significant side-effects; the NNH (number needed to harm) of tricyclics is 6, of opioids 8, of gabapentinoids 12, of Tramadol 15, Capsaicin 10 and of SSRIs 20. The safest by far is the Lidoderm patch, with a NNH of 40 - but guess what? It will cost more than the others! Thus treatment choices are going to be a balance between efficacy, which most of them have, side-effects, which most of them produce and cost, and remember that the newer ones are nearly always more expensive. In fairness, they have to be, because the pharma company has to reclaim its development costs.

Pain Clinics are usually glad to see patients where success has not been achieved, as often further medication changes, or the addition of other specific treatments, for instance, nerve blocks or Pain Management Programmes, can be successful in reducing pain and increasing activity
http://www.thepainweb.com/doclib/topics/000081.htm

Monday 27 June 2011

Neuropathy study with stats

Mark Twain said: 'There are lies, damned lies and statistics'
and while this may be truer in other areas than in medicine (ask any politician) there is a bewildering amount of statistics about neuropathy on the web. There has to be really because of it's vague and undefined nature and the amount of causes and effects. The medical profession then uses statistics to underscore its findings and theories. For the ordinary patient, it's a question of sifting through the information and if the same statistic appears in several different studies or findings, you can assume that it's pretty near the truth. This article is full of them but to be fair, it gives the findings of a large American study of the range of neuropathy and HIV and sets them out very clearly. There is nothing new here for the experienced neuropathy Net hunter but it backs up what you had already heard or suspected.

Neurological and cognitive problems
Neuropathy still common in patients with HIV, older age a risk factor
Michael Carter
Published: 14 March 2011


Peripheral neuropathy remains common in patients with HIV, US investigators report in the online edition of AIDS.

Rates of the disease and its symptoms were monitored in over 2000 patients who started HIV therapy between 2000 and 2007.

After three years of therapy, a third of patients had evidence of neuropathy and 9% had symptoms. Older age emerged as an important risk factor for the condition.

“Peripheral neuropathy in HIV patients persists despite improved immunological function and virologic control associated with combination antiretroviral therapy and decreased use of neuro-toxic [drugs],” comment the investigators.

Neurological disorders such as peripheral neuropathy are a well-recognised complication of HIV infection. The virus itself is a cause, and some older anti-HIV drugs such as d4T, ddI and ddC can cause nerve damage. In addition, ageing is associated with a deterioration in neurological function, and some of the co-morbities that are common in patients with HIV, such as diabetes, can also increase the risk of neurological disorders.

Treatments with the antiretroviral drugs with the highest risk of peripheral neuropathy are no longer recommended in resource-rich countries.
However, understanding of the disorder is still imperfect. Therefore US investigators designed a study to assess:

The prevalence of peripheral neuropathy and its symptoms among patients starting HIV therapy.

The risk factors for the disorder and its symptoms.

Predictors of recovery from peripheral neuropathy after stopping therapy with neurotoxic drugs.

Risk factors for neuropathy and its symptoms when taking neurotoxic antiretroviral therapy.

The study included 2141 individuals who were starting antiretroviral therapy for the first time.

They were assessed for peripheral neuropathy using tests that measured ankle reflex and sensation in the big toes. Patients were also asked to report symptoms of the disorder including numbness, pins and needles, and burning sensation.

At baseline, 23% of patients had reduced peripheral sensation or ankle reflexes and 4% reported symptoms associated with peripheral neuropathy.
The patients did well on antiretroviral therapy, and 82% suppressed their viral load below 400 copies/ml and 70% experienced an increase in their CD4 cell count to above 350 cells/mm3.

Three years after starting treatment, 32% of patients had reduced sensation or ankle reflexes, and 9% had symptoms of peripheral neuropathy.
Factors associated with neuropathy were older age, a low baseline and current CD4 cell count, use of neuro-toxic antiretroviral drugs, taller height, and black race .

Symptoms of the disease were associated with older age, a low current CD4 cell count, a higher baseline viral load, use of neuro-toxic anti-HIV medications, diabetes, taller height, use of statins, and shorter duration of antiretroviral therapy.

Individuals who ceased taking neuro-toxic antiretrovirals after developing peripheral neuropathy and its symptoms were followed to evaluate their recovery.

Over half the patients (54%) continued to have neuropathy and symptoms persisted in 18% of individuals.

Taller patients were less likely to recover toe sensation or ankle reflex, and symptoms were more likely to persist in older patients.
Neuro-toxic antiretroviral drugs remain a mainstay of HIV therapy in many resource-limited countries. Therefore the investigators examined the factors associated with the development of neuropathy and its symptoms when taking these therapies.

Prevalence of neuropathy among patients taking neuro-oxic therapy was 27% and 9% had symptoms.

Older age was associated with neuropathy, as was therapy with a protease inhibitor, black race, and a lower CD4 cell count.
Symptoms were also associated with older age, as well as a history of diabetes, increased height, and use of a protease inhibitor.

The investigators believe their findings have implications for the future management of patients. They comment, “given the rapidly aging HIV population due to successful therapy, the intersection of aging and increased risk of neuropathy portends ongoing challenges from this complication for HIV therapeutics.”

The association between diabetes and neuropathy also concerned the investigators, and they write: “This is a very serious finding given the increasing impact of insulin resistance and diabetes in the setting of HIV infection.”

Evans SR et al. Peripheral neuropathy in HIV: prevalence and risk factors. AIDS, online edition, doi: 10.1097/QAD.0b013e328345889d, 2011 (click here for the free abstract).

Sunday 26 June 2011

Treating neuropathy

Don’t you just love it when doctors talk to you in words you can understand?
This video explains a lot of the terms you will come across if you surf the net for neuropathy information. Yes he’s promoting his own site which is basically a wide-ranging pharmacy but for everything offered there, they require a doctor’s prescription, so there’s no hidden, alternative agenda. He talks about approaching neuropathy holistically, which is exactly what is necessary for HIV patients. Doctors need to look at and treat the whole picture because so many things can influence each other in our situation. The point is that he explains the basic issues surrounding neuropathy, in a way which everyone can relate to and in a way that few doctors seem either have the time for, or are able to do. Worth a listen.

Saturday 25 June 2011

Furry Friends

This is a personal post from an ex- banker, turned Aids activist Bob, who writes for Positive Lite, a Canadian site for people with HIV (for link see below). I'm sure many people will identify with what he says (and dog owners will already be very much aware of the theraputic effects they can bring!).

Furry Friends Friday: the Peripheral Neuropathy Edition

I hope you’re not getting sick of seeing these guys. These are our three errant hounds in their very best “we are not amused” pose.
Actually, it’s all a front. They are easily amused, if tickling their tummies counts.

We’re fortunate to be living right out in the country where our dogs (left to right Dudley, Dougall and Peggy) can roam quite freely, at least within the confines of an invisible fence. So I don’t need to take them for walks. Which is just as well because walking has been a touchy issue of mine lately. Blame it on the peripheral neuropathy in my feet.

It’s probably a side effect of the meds I take. Peripheral neuropathy is all about irreversible damage of the nerve endings; it’s an odd mixture of numbness and pain. That combination makes no sense, I know, but that’s the only way I can describe it.

Anyway, I have no ability to scale down or replace my existing meds, because – well, there is nothing else out there I’m not resistant to. So . . a long time ago, my HIV doctor had put me on amitriptyline, an anti-depressant, in this case prescribed for pain reduction. It didn’t work, but in recent visits we’ve revisited that drug, stepping up the dose to 100mg a day. The good news is that it seems to reduce some of the pain, and I’m left with the numbness and just a dull but bearable pain, instead of the ouchy, ouchy feet I had before. That’s enough to let me walk, if not long distances, at least ones I would normally encounter in everyday life.

The downside is that the amitryptyline makes me feel funny, light-headed. That’s likely the anti-depressant effect kicking in. I don’t need that. I seem to be continually addressing side effects of pills prescribed to counteract side effects of other pills. But the larger picture is that I’m better off than I was pre-amitriptyline.

I also found that comfortable shoes help. When I’m around the house, for instance, I wear a pair of slippers, just like your granddad wore. Outdoors, I wear New Balance brand shoes, which are particularly good for hurty feet, I’ve found.

The bottom line is that there are no miracle cures for this condition. However there are small steps you can take to make your feet less hurty. At least that’s my experience.

http://positivelite.com/content/

Friday 24 June 2011

rhNGF (no, it's not a misprint)

If you have been surfing the web looking for useful information about neuropathy, you may well have come across the unusually named, rhNGF as one of three proven effective treatments for neuropathic pain and problems. The other two are cannabis and capsaicin and have been extensively covered on this Blog but rhNGF is for most people, a complete mystery and when you try to research it on the Net, you can understand why!


Recombinant human nerve growth factor (rhNGF) is regarded as the most promising therapy in decades, for neurodegeneration of the central and peripheral nervous systems as well as for several other pathological conditions involving the immune system. However, rhNGF is not commercially available as a drug. For a start, it hasn’t been approved by the major, international medical authorities as yet, so any discussion at the moment is pretty much irrelevant but its day will come and it will be useful to have some idea of what it is and what it does.

At this point it might be advisable to avoid all websites ‘selling’ this as a product. It’s one of those things that attracts health and fitness fanatics, (like anabolic steroids for instance although there is absolutely no connection)and I have no idea why but because the national organisations haven’t as yet approved it for neuropathy treatment... you know the story for HIV patients... throwing any doubtful ‘variable’ into the mix is rarely advisable.

Giving a simple definition of rhNGF, is however, easier said than done because it is an extremely complex chemical structure. I certainly don’t understand much about it but will attempt here to simplify the information available on the Net. If you know better, or have any information to offer, please use the contact form at the top of the page, to put us all better in the picture.

First of all, the letters stand for Recombinant Human Nerve Growth Factor. ‘Recombinant means the new entity (e.g., gene, protein, cell, individual) that results from genetic recombination.

In short, NGF is a protein that is involved in the growth of peripheral nerve cells and was discovered 50 years ago as a molecule that promoted the survival and differentiation of sensory and sympathetic neurons. It is a small secreted protein that is important for the growth, maintenance, and survival of certain target neurons (nerve cells). It also functions as a signalling molecule.

While "nerve growth factor" refers to a single factor, "nerve growth factors" refers to a family of factors also known as neurotrophins. Neurotrophins represent an important family of regulatory proteins essential for sensory nerve development. Several neurotrophins have been identified, including nerve growth factor (NGF), brain-derived neurotrophic factor (BDNF), and neurotrophin 3 (NT3). NGF is one of the most studied neurotrophins. It is a key regulator of sensory neurone excitability and an important mediator of injury-induced nociceptive and neuropathic pain.

It is an immensely complex biological process for the layman but NGF ‘s have shown very promising results in animal studies. Recombinant human nerve growth factor (rhNGF) has been in phase III trials (essentially meaning it's taken seriously!) and the results are also extremely encouraging.

Particular attention is given to a growing body of evidence that suggests that among other roles, NGF signalling, aids neuroprotective and repair functions. The analysis points to many interesting unanswered questions and to the potential for continuing research on NGF to substantially enhance our understanding of the mechanisms and treatment of neurological disorders.

The administration of nerve growth factor (NGF) has been found to prevent neuropathies induced by anti-cancer drugs such as cisplatin, vincristine and taxol. However, it is clinically important to know whether NGF is beneficial once the neuropathy is already established and this is one of the reasons why medical authorities are not yet ready to approve commercial drugs. It’s something with great potential and something which will require a lot more research and assessment.

Regarding our own situation as HIV patients with neuropathy, recombinant human nerve growth factor (rhNGF) was used in a multicenter, placebo-controlled, randomized trial by Justin McArthur of Johns Hopkins University and colleagues to evaluate its efficacy as a treatment for HIV-associated peripheral neuropathy. Nearly 300 individuals were randomized to receive two different doses of nerve growth factor or placebo. After 18 weeks of randomized treatment, there was a significant difference in average and maximum pain intensity favouring rhNGF. However, there were no differences in terms of mood, analgesic use, or epidermal nerve fibre density between the groups.

Giovanni Schifitto of the University of Rochester and colleagues reported on data from the 48-week open-label phase of the rhNGF study described above. After the randomized phase, 200 of the 235 eligible patients continued taking either 0.1 or 0.3 mcg/ kg of rhNGF. Neurological and quantitative sensory testing was performed at baseline and at week 48. Consistent pain improvement was observed in all groups, with the high-dose recipients demonstrating better outcomes than low-dose participants.

I'm sorry, I don't understand enough about it to be able to describe it more simply and for once, research on the Web leads you to very complicated scientific journals and papers which are way above my head. So why write a post about it you may ask? The reason is that a) you will probably see it mentioned in passing (but not in detail) and b) if it is one of three things they are pretty sure about, then it's only a matter of time before it becomes available in an approved format. It's a treatment for the future then and the more questions patients ask, the more likely the whole treadmill will turn more quickly, to everyone's benefit.

Good luck looking for information and if you do find something useful to share with us, please do - knowledge is always power, especially concerning medical issues.

Thursday 23 June 2011

National Neuropathy Week Sky Radio

A radio interview on Sky, for the Neuropathy Association (USA). The American National Neuropathy Week is in May, so it appears late here but to my mind, every week is neuropathy week if you're a patient!
Anyway, there's nothing wrong with the message and the more publicity the better.




www.neuropathy.org

Wednesday 22 June 2011

Cannabinoids/Cannabis/Neuropathic pain (Part 2)

This post from an Oregon marijuana organisation –Oregon’s Online medical Marijuana resource (see link below), explains how it actually works and why smoked marijuana seems to be so much more effective than oral preparations. Very useful information if you are looking to make an informed decision.

MEDICAL MARIJUANA USE SHOULD BE APPROVED
mapinc / 5/29/2011 / Source: Register Citizen

LEFT]Since 1972 when marijuana was placed as a Schedule I drug in the Federal Controlled Substance Act, there have been many questions about the safety and effectiveness of this drug in combating a variety of medical ailments.

Arguments against the medical use of marijuana often focus on issues that have less to do with its therapeutic value and more to do with broader policy implications. Opponents frequently claim that the medical use of marijuana would set a bad example for youth, encourage more wide-spread use of the substance and generate other social problems.

As a pharmacist with years of experience with pain and symptom management, the available research on the medical use of marijuana supports its approval as a drug for palliative care. I am convinced our legislature should approve legislation to legalize the use of medical marijuana in Connecticut.

Oral preparations of cannabis can be found throughout history for a multitude of therapeutic uses. In many countries, oral cannabinoids are used to relieve nausea and vomiting, stimulate appetite, and help treat chronic pain.

One question that consistently emerges from discussions about marijuana as medicine is whether smoked marijuana is more effective than oral preparations of THC – and clinical evidence makes a strong case that smoked marijuana is indeed superior for palliative purposes.

A study at McGill University Health Centre found that a single inhalation of herbal cannabis, three times daily for five days, reduced the intensity of pain, improved sleep and mood, and was well tolerated in patients with neuropathic pain.

Another study found that smoking cannabis three times daily reduced HIV associated sensory neuropathy pain by 34 percent – a reduction in pain twice as effective as the 17 percent reduction with placebo cigarettes. During this study, smoked cannabis was well tolerated and effective in relieving chronic neuropathic pain. Oral THC was compared with smoked cannabis in over 1,000 patients to treat chemotherapy-induced nausea and vomiting. Researchers found that patients who smoked cannabis had a 70-100 percent relief from their nausea and vomiting compared with only a 76-88 percent relief in those who took oral THC.

The reason that inhaled cannabis is more favorable than oral cannabinoids may be due to how the human body reacts to the substances. Inhaled marijuana has a more predictable effect, which is both more rapid and potent.

Smoking cannabis causes a rapid rise in plasma levels of THC. A peak THC concentration is reached within nine minutes of smoking a single cannabis cigarette and quickly decreases due to rapid distribution into the tissues. This rapid onset of action is desirable in patients with breakthrough pain or nausea who need immediate relief.

When cannabinoids enter the body, they begin to work on the body’s receptors. The principal actions at the receptor cause a stabilizing effect of the neuron, depressing neuronal excitability and reducing the release of transmitters.

By stabilizing the neuron in this fashion, there is a reduction of pain transmission to the brain.
Overall, cannabis has been found to have minimal toxicity and a good safety profile. When delivered via inhalation, cannabis does not have similar health hazards to nicotine-rich tobacco smoking, except for a potential increased risk for bronchial irritation or bronchitis.

When considering the relative safety of cannabis, it is important to remember that FDA indicated medications currently used to treat neuropathic pain have a variety of pitfalls. Medications typically used to treat neuropathic pain can include anticonvulsants, antidepressants, opioids, and local anesthetics, which have varied results and adverse side effects that can limit medication adherence. These side effects can include constipation, paresthesias, sexual dysfunction, weight gain, appetite loss and arrhythmias.

Simply put, cannabis is a substance that can deliver significant pain relief. With its quick onset of action and high profile for relief of pain, it is clear that there is a potential place for cannabis in palliative care.

Medical teams at Connecticut Hospice currently employ a variety of medications, including an oral derivative of cannabis, to relieve the pain experienced by the terminally-ill patients and manage their medical conditions such as nausea, vomiting and anorexia.
Working with University of Connecticut pharmacy students who come to Connecticut Hospice to complete their clinical requirements, we would be able to conduct trials of newly approved cannabis forms specifically for pain and suffering related to serious medical conditions.

I fully support adding medical marijuana to the tools we use to support our patients’ well-being at the end of life and I believe "An Act Concerning the Palliative Use of Marijuana" should be approved and signed into law.
MAP posted-by: Richard R Smith Jr.
http://ormmj.com/ct-medical-marijuana-use-should-be-approved/

Tuesday 21 June 2011

Cannabis/Cannabinoids/Neuropathic pain (Part 1)


Where ever you look on the internet, the general conclusion regarding effective treatments for neuropathic pain seems to suggest that only three things really work: capsaicin, smoked cannabis and rhNGF (nerve growth factor). The latter has not been approved by the major national organisations and we have discussed capsaicin at length in other posts on the blog.
This is the first of two more posts with reasonable explanations supporting Cannabinoids. Legal problems aside, there seems to be a growing cache of evidence supporting the efficacy of cannabis, not only as an analgesic but as something with positive effects on the nervous and other body systems.
Opiates do not have clear indications for neuritis and neuropathy although they are widely prescribed for the pain but marijuana actually has been shown to relieve peripheral neuropathy due to HIV and diabetic neuropathy. THC has been useful for treating phantom pain with amputees, causalgias (another peripheral neuropathy condition), neuralgias, and conditions like trigeminal neuralgia. Medical marijuana has also found success with chronic cancer pain. A study at the University of Iowa found oral THC at 5 to 10 mg was as effective as 60mg of Codeine for terminal cancer pain relief.
One question that is obvious – Does marijuana alleviate pain simply because patients no longer care about it? Do the psychoactive effects of marijuana simply influence a patient’s attitude towards the pain and allow him or her to mask it out?

Cannabis/Cannabinoids/Neuropathic pain

5/5/2011 – Recent scientific articles reviewed the ability of cannabis and cannabinoids to treat pain, especially neuropathic pain. This may be new hope for doctors who are struggling to treat these conditions. Clinical trials on humans using cannabis in various forms (smoked, extracts, oral THC, synthetic analogues) were reviewed by different research teams. Three recent reviews of those human trials demonstrate that cannabis and cannabinoids are effective for treating certain types of chronic pain with acceptable side effects.

A review on the treatments for HIV neuropathic pain concluded that, “evidence of efficacy exists only for capsaicin, smoked cannabis and rhNGF (nerve growth factor). However, rhNGF is clinically unavailable and smoked cannabis cannot be recommended as routine therapy (Phillips et al).”

Meaning, the only medications that have been shown to effectively alleviate HIV/AIDS neuropathic pain are not available on the market. Notably “smoked cannabis” was shown to be effective for the treatment of HIV neuropathy, a condition that affects more than 40% of the estimated 33 million people currently living with HIV.

A University of Pennsylvania research team published a similar review concluding that, “there is strong evidence for a moderate analgesic effect in peripheral neuropathic and central pain conditions, and conflicting evidence for their use in nociceptive pain. For spasticity, most controlled studies demonstrate significant improvement. Adverse effects are not uncommon with cannabinoids, though most are not serious and self-limiting.”

Last but not least, researchers from Canada concluded, that “overall the quality of trials was excellent. Fifteen of the eighteen trials that met inclusion criteria demonstrated a significant analgesic effect of cannabinoid as compared to placebo, several reported significant improvements in sleep. There were no serious adverse effects. Adverse effects most commonly reported were generally well tolerated, mild to moderate in severity and led to withdrawal from the studies in only a few cases (Lynch et al).”

This team from was from Dalhousie University Department of Anesthesia and Pain Medicine, Hospital for Sick Children, University of Toronto. The researchers go on to say, “this systematic review of 18 recent good quality randomized trials demonstrates that cannabinoids are a modestly effective and safe treatment option for chronic non-cancer (predominantly neuropathic) pain.”

Traumatic pain is scratching your arm, banging your thumb with a hammer or post-operative pain (surgery). But neuropathic pain is something completely different because it is generated by diseases (Multiple Sclerosis, HIV/AIDS, amputation) or as a side effect from medication toxicity. Essentially the brain begins sending pain signals out to the body for no reason. Patients say they experience it as a burning or shooting pain sensation in their hands and feet at first. Neuropathic pain often progresses to become much more intense. Opiates do not seem to have any impact in certain groups of patients. Many HIV/AIDS patients use cannabis therapy already today; anecdotal reports have been confirmed with successful results in top-quality clinical trials.

Jahan Marcu is currently investigating the pharmacology of cannabinoid receptors. He was working at the California Pacific Medical Center Research Institute when exciting discoveries were made showing enhanced anti-cancer effects with THC and CBD from the Cannabis plant. The findings were published in the Journal of Molecular Cancer Therapeutics. In 2009 he received the Billy Martin Award from the International Cannabinoid Research Society (ICRS). Jahan is currently the vice-chair the Medical and Scientific Advisory Board at Americans for Safe Access (ASA). Contact: science { at } freedomisgreen.com

http://www.oliveny.org/blog/2011/05/cannabiscannabinoidsneuropathic-pain/

Sunday 19 June 2011

Arnica massage

The more you research into neuropathy, the more you realise that there can't just be one medication, or treatment, or alternative treatment, that is capable of helping people. The condition itself has so many faces and so many causes that it's logical that people can be helped by a variety of ideas. In my view, there must at least be some sort of scientific evidence to back up a treatment and that evidence must have been tried out by enough people to make it valid but after that, the medical establishment hasn't, as yet, come up with the answer so we can try to help ourselves while we wait.
Massaging your feet with Arnica seems to be something that at the very least can't do any harm but also has a logic for neuropathy, that suggests that some people could significantly benefit from it. It is widely used in rheumatology treatment because it is easily absorbed through the skin and is widely recognised for it's analgesic and anti-inflammatory qualities. Like anything else, take a look at the video and make your own mind up. It's not expensive, it's widely available in supplement shops and it might help. You probably need a good friend to help with regular massage though!


Exercise tips for neuropathy

This post comes from the blog of Sam Page, an L.A. fitness trainer (see link below the post). Good advice and simple exercises that everyone can follow.

Exercise Slows, and May Reverse, Peripheral Neuropathy

I was recently diagnosed with peripheral neuropathy. I still have feeling in my fingers, but I’ve lost most of the feeling in my toes. Do you have any advice on ways I can manage this condition through exercise or supplementation?
—Lee, Cheyenne, WY


Peripheral neuropathy causes pain (sometimes described as tingling or burning) and numbness in the hands and feet. While HIV is one cause of the condition, it’s certainly not the only one. Diabetes and cancer treatments (such as radiation or chemotherapy) are also common causes. Sometimes the condition improves with treatment of the underlying cause, sometimes it doesn’t.

Resistance training is a great way to improve overall muscle strength, especially for people with peripheral neuropathy, and there’s research to prove it. In a 2006 study, subjects who walked for 1 hour, 4x/week, slowed down the worsening of their peripheral neuropathy.

Researchers at the University of Louisville showed that lower-body weight training (30 minutes 3x/week) improved muscle strength and quality of life in patients doing such routine tasks as walking to the car.

You should avoid high impact exercises (e.g., running on a treadmill or jumping up and down) because they more often result in foot injuries. Seated resistance exercises are an excellent choice, as are swimming, rowing, and pretty much any upper body exercise. If you don’t have access to weight machines, you can try these simple movements anywhere:

Hands — Touch the pad of your thumb with the pad of the index finger, moving the index finger down to the base of your thumb. Repeat this movement twice with the index, middle, ring, and little fingers in succession.

Legs & Feet — Straighten one knee and point your foot. Flex your ankle five times. Next, circle your ankle clockwise, and counterclockwise, five times each.

Balance — From a standing position, rise up slowly on your tiptoes, and then go back on to your heels. The knees should be kept straight, but not locked.

Bottom line: Exercise may not actually reverse the condition, but it can most certainly help. —S. Page

http://www.peacelovelunges.com/sports-fitness/ask-sam/will-exercise-help-my-peripheral-neuropathy/

Saturday 18 June 2011

The Cymbalta Diaries - A personal story

I came across this blog: (http://spinningtumor.blogspot.com/2007/03/cymbalta-diaries.html) written by a lung cancer patient with a fantastic sense of humour and an enormous dose of realism. She has developed neuropathy and has just begun taking Cymbalta and has decided to keep a diary. Well worth reading! I'm publishing one post here but I'm sure many people will wish to continue reading her blog - general title 'As the Tumor turns':Subtitle: 'That which doesn't kill us merely postpones the inevitable.' - full link above.
The Cymbalta Diaries

I deliberated long and hard before I decided to take this new drug Cymbalta that my GP prescribed to help with the pain from peripheral neuropathy. This pain, which is a result of nerve damage caused by one of my chemo drugs called Vincristine, has become progressively worse since chemo ended, and is beginning to put a big fat crimp in my QOL. On bad days the pain is all I can think of, and even on the best of days, it's preventing me from doing things I enjoy, like gardening and working out.

I had my last treatment in January. In early February I pruned my roses with no problems, but today my hands hurt so exquisitely and severely that I can barely hold my pruners, much less squeeze them. And I'm just waiting for the day when the pain and numbness cause me to drop an 800 pound barbell on somebody's head, most likely mine.

My life has become pretty darn miserable lately. I have numbness in my hands and arms and feet, accompanied by what's technically called "tingling" but that's way too mild and festive a word. It's really more like an intense constant soundless buzzing. Sort of like when your foot falls asleep, except here it's all four of my limbs, and they never wake up. And this grating neurological cacophony is accompanied by a throbbing, pervasive soreness, achy tenderness, and sharp shooting pains that radiate up my arms into my shoulders. I would like very much for it to go away.

But this drug, Cymbalta. In the few years since it's been approved to treat major depression, generalized anxiety disorder, and diabetic neuropathy (Vincristine induced neuropathy is actually off label but word on the street is it's effective anyway), it has managed to develop itself a pretty nasty anecdotal reputation among users. It's most popular nickname seems to be "the Drug From Hell."

Cymbalta's two most commonly reported side effects are: 1.) turning into a raging homicidal/suicidal maniac, and 2.) gaining 45 pounds. But when people try to stop taking the damn stuff, the withdrawal, even with tapering, is said to be more brutal than trying to quit heroine, cigarettes, coffee, and Grey's Anatomy all at once while somebody is pounding on your head with a sledge hammer and running electric shocks through your brain.

Here are some of the less dramatic symptoms that show up in a google search for Cymbalta side effects:

nausea
vomiting
diarrhea
profuse sweating
zero libido
severe insomnia
extreme irritability
agitation
constipation
suicidal ideation
debilitating lethargy
uncontrollable hunger
inability to eat
wild mood swings
kneejerk rages
vivid nightmares
blurry vision
tinnitus

Wait. That sounds awfully familiar, almost like...hmmm. Chemotherapy? Why the hell would anybody submit to this hell if their life didn't depend on it?

But. You have to figure there's a selection bias in action here: the people who take Cymbalta with very good results and minor or no side effects are not generally the people who stay up all night posting on internet message boards about how Cymbalta forced them to them hack their parents into tiny pieces and deep fry their spleens like a batch of Tater Tots for supper. So even if 99% of the people who take Cymbalta find it effective and benefit from great relief, any random internet search will tend to be skewered in favor of the 1% that became rabidly addicted homicidal ax murderers with a keyboard. That doesn't necessarily mean that I will.

But just in case I do, I've decided to start keeping The Cymbalta Diaries, so I can monitor my reactions to the drug. At least if I flip out and start deep frying people's organs, my beloved children may be able to sell the screen rights to these diaries and retire somewhere in the south of France where nobody knows who the hell their crazy mother was.

So, without further ado, I present to you: The Cymbalta Diaries, Day 1.

7:30: Woke up with severe pain and buzzing in both hands and arms. Feet felt like bursting into flames when they touched the floor. Nevertheless my mood was vaguely cheerful and spacy as usual. Pain subsided somewhat after a few minutes of puttering with the animals and boiling a pot of tea.

7:50: Made up a batch of super healthy high protein high fiber blueberry muffins with flax oil for breakfast.

8:15: Took first Cymbalta capsule, 30 mg., with green jasmine tea.

8:20: Decapitated three neighbors and gained 45 pounds.

8:21: Haha, not really. Actually I just took the muffins out of the oven. They turned out pretty good.

8:22: No change.

9:15: Nothing.

10:15: Nada. Have another muffin?

11:30: Ho hum.

1:00: Lalalala, I'm waaaaiting.

2:15: Ok, maybe the pain is a little less. Or maybe not. I can't really tell. Nothing dramatic. But also no sweating, no vomiting, no mayhem. No noticable mood changes, still vaguely cheerful and spacy. Maybe it takes time to build up or something. I'll report back later. But if you don't hear from me, be sure to watch the 6:00 news tonight. Just in case.

Friday 17 June 2011

neuropathy diary

This post is taken from the health diary of the 73 year old American, Wallace Dickson.It's called, "Life in the Fasting Lane...How I starved myself to better health" It's a personal account of his experiences with neuropathy and how he set about improving his diet to help deal with it. It's published here for no other reason than it's a shared experience and a good read. Running a marathon...at 71! Hats off to that man - his optimism is inspiring!

Sorry, folks, for allowing so much time to go by without continuing my "riveting" blog. Seems I left off some weeks ago, at a point just days before I actually ran the Comcast Baltimore Marathon, in October 2002. At age 71, you will certainly understand if I tell you I wasn't the fastest runner of them all! In fact, I was probably one of the slowest out of the 15,000 or so who ran the marathon that day. But I was also one of the oldest, and I was not the last runner to hit the finish line! I ran the 26.3 mile marathon and completed it that day, and it was one of the highlights of my life. A milestone. A proud moment to remember (and brag about now and then!). Well, truth be known, the reason I decided to run the marathon was that I needed to break a barrier. I needed to find a way to lose weight and bring down my cholesterol count. Well, running a marathon is NOT the way to lose any weight! I found this out the hard way - by training and running the marathon. About all one can expect to accomplish is the redistribution of weight - lose some fat and gain some muscle, for a leaner looking body, but not any significant weight loss. However, the good news - my cholesterol dropped down to a much safer count of 140. My doctor agreed that I no longer needed to take the statin drug, and that I should "keep on running!" Which, pretty much is what I've been doing except for some complications that I'll tell you about a little later.

The worst part of the running that I did through the marathon training and the race itself was what seemed to be the aggravation of my numbness - feet, lower legs, fingers, hands and wrists were all now feeling a little numb. The pounding of my body parts while running seemed to have caused to neuropathy to advance more rapidly and become much more pronounced than ever. So back to my physician for consultation. When he recommended that I see a neurologist and get an MRI of my lower back (lumbar region) to see if there were any pinched nerves, I realized I might be in for some heavy future medical expenses. The last time I had back surgery for a herniated disc, the bill was close to $15,000, and that was about 15 years earlier before the dramatic increase in medical costs and hospital bills!

So, now without medical benefits except Medicare, I decided to register at the VA Hospital Center which was not too far from my home in Adams Morgan in downtown Washington DC, where I would be eligible for medical services as a Korean War veteran at no expense, except a small co-pay for pharmaceuticals prescribed.

Well, that was almost two years ago, following my marathon run. I've had eighteen months of thorough-going medical diagnostic testing, including MRIs, EMGs, and every other medical examination they thought might help them diagnose my neurological problem. But all tests have shown "normal" results. They tell me I am not diabetic, no HIV/AIDS, no anemia, no vitamin deficiencies, and so on. Everything normal, and they tell me I'm as healthy as a younger man. So the diagnosis now is "idiopathic peripheral neuropathy" (no cause determined) and they don't know what else they can do. They have told me to "come back a year from now and "we'll see where you are at that time." So, I've been left to my own devices - self medication - to deal with this numbness, which by now has progressed to encompass my entire body! From scalp to soles, I'm numb. I feel like I'm walking on sponges. I have the perennial "dropseys" - fingers so numb I can't hold on to bottle caps or paper clips. I have a terrible time turning pages when reading the morning paper or a book. Turning the pages of my client's tax return is always an embarrassment - must lick my fingers to moisten them and mutter constantly about how dry my fingers are "working with paper all day." Oh well.

Anyway, what I'm getting to is to explain for you, the reader of this bioblog, what propelled me into joining the Calorie Restriction Society. Perhaps by now you already have a good idea.

Since the doctors seemed to be stumped for answers, diagnosis or treatment, I had been exploring all the medical literature available on the internet, joining online support groups, and finding local support groups that hold regular meetings where I could go and mingle among others with the same condition. I found that peripheral neuropathy is common among those who suffer from diabetes, as well as among AIDS patients. Additionally, with these groups, there is a lot of pain associated with the neuropathy. So most of the literature, studies, and discussions are about pain relief, and treatment for the underlying cause (diabetes or AIDS). Not much there applicable to my situation I discovered.


But there is a lot of literature out there. And after reading a lot of it, I pretty much concluded that PN is a condition arising out of nutritional and metabolic imbalance. I decided the cause of my condition was nutritional, odds on. Then I discovered the literature on caloric restriction and the beneficial effects that this regimen can have on the health of an individual practicing CR. I decided it was worth a try in my case for two reasons: (1) restricting calories was a way to lose weight, something I still needed to do; and (2) practicing calorie restriction can enhance the body's defenses against disease and aging. Seemed to me to be the answer to my question about what should I do next now that the doctors are stumped!

For an obese individual (and I was still about 50 pounds too heavy) losing weight is doubtlessly the single, most important strategy known to medical science! Obesity is the underlying cause of many, if not most, modern health problems, from diabetes to "the gout" to heart disease and a lot of other modern diseases. One neurologist, when he found the test results were all normal and couldn't tell me what was causing my neuropathy, "start by losing some of that weight!" "You may find," he said to me at the time, "losing weight may be the only medicine you need."


So, I reasoned, losing weight by restricting caloric intake was an appropriate strategy for me. I set up a regimen restricting my intake to 1500 calories per day. Over the three or four years leading up to this time, I had already pretty much migrated to a quasi-vegetarian diet - that is, fresh raw fruit and vegetables, nuts, beans, whole wheat grains, and limited amounts of fish and chicken breast. I had almost entirely eliminated from my diet all red meats, all dairy, all refined sugars and starches, all soda pop, all alcohol, coffee and prepared foods. I drank only water and tea, and today I still follow that diet. About the only sweets I eat are occasional ice cream or sorbet, some licorice now and then, and an occasional mint to refresh my breath.

I no longer smoke cigarettes. (After 45 years of pack-a-day smoking Marlboros, I quit cold turkey 14 years ago.)

So restricting calories seemed to be not to difficult a task for me. Although I had to adjust myself to the feelings of hunger pangs at times during the day. What I found was that a cup of hot herbal tea usually takes the edge off and allows me to comfortably ride out the hours remaining until the next meal. Sometimes that is easy to do; sometimes it's no so easy. But the tea always helps me to endure.

But the most fascinating aspect of the Calorie Restriction with Optimal Nutrition regimen for me was the potential it promised as a treatment for peripheral neuropathy. All the science on calorie restriction supports the theory that eating less leads to better health and longer life. Now I wasn't so interested in the longer life part - but I was interested in the better health part. If calorie restriction could give my health a boost at the cellular level, then maybe that would mean slowing down the advancing numbness, or even reversing it. I read all the literature voraciously and am to this day convinced that I am on the right track with this. And even if I'm not, I know I am not doing my body any harm! I have lost, so far, more than 25 pounds (down from 222 pounds to 196 pounds in 6 months) and am still losing about 2 or 3 pounds each month. My goal is to weigh 170 which is about 5 or 6 pounds more than I weighed when in my teens.


Latest developments: I am scheduled for elaborate neurological/cognition testing this autumn at the VA hospital. The neurology clinic there wants to see whether my brain is getting numb I guess! Also, I am registered for a three-part seminar in nutrition beginning in September, where I hope to learn more about how to eat smarter while losing weight and improving my health.

But now, dear friend, I must stop writing for now and move on to other tasks.

But I will come back very soon to share with you what I'm learning about good nutrition, calorie restriction, and peripheral neuropathy. See you then!
http://www.healthdiaries.com/diet/calorierestriction/fasting-lane/

Thursday 16 June 2011

Neuropathy training for medical professionals

I make no apology for posting 4 video clips in the same post (total just over 20 minutes) because they show in maneagable bites how medical professionals are trained to recognise neuropathy in their patients. They also emphasise something you will all be aware of; this is a huge problem that is amazingly still underestimated and still growing.In part three he hammers the point that doctors need to talk to each other about their patient...the best advice for doctors dealing with HIV patients! The sound quality is not great and therefore needs a little concentration but it's worth the effort.
The speaker is Dr. John Hayes Jr. and his website is www.neuropathydr.com and here lies a problem relating to this blog. I won't promote commercial organisations because that brings its own responsibility and that is not the purpose of this independent blog. This doctor is promoting Re-builder electro-diagnostics on his site (the 5th video is not shown here - it deals with the product itself) but this does not mean that the information he gives in the videos is not valid - on the contrary, it is simply explained, packed with accurate information and very helpful.
If all you get out of it is that it tells you that you're not alone with what you're suffering and probably also teaches you something you didn't already know then you've not wasted your time.


Diagnosing & Treating - Peripheral Neuropathy... door johnhayesjr


Diagnosing & Treating Peripheral Neuropathy Part2 door johnhayesjr


Diagnosing & Treating Peripheral Neuropathy Part3 door johnhayesjr


Diagnosing & Treating Peripheral Neuropathy Part4 door johnhayesjr

Wednesday 15 June 2011

How important is Vitamin B in helping with neuropathy symptoms?

This article concerning B vitamins, comes from The New York Buyers Club Blog.
This Blog is edited by staff, volunteers and members of the New York Buyers’ Club, claims to be a non-profit co-op and information exchange founded in 2004 to help people buy the supplements they need in order to manage their health and also find reliable information on how best to use supplements. Nevertheless, although there is no reason to doubt them, they are a commercial organisation which sells supplements. You need to make your own mind up as to how much validity you give their information. HOWEVER having said that, I have checked and double checked the scientific accuracy of their information regarding vitamin B12 and I can't find anyone who argues with what they say although the potential for improvement by using B12 supplements depends on the individual - the claims made here are very optimistic!


B-12 may play a very critical role in preventing HIV disease progression: a large Johns Hopkins University study found that people with HIV who are deficient in B-12 have a two-fold increased risk of progression to AIDS. In this study, those who were B-12 deficient progressed to AIDS four years faster than those who were not. The exact mechanism by which adequate B-12 in the body may slow progression is not known, but the finding is not surprising, given all the roles B-12 is known to play in healthy human function.

B12 and another B vitamin, folic acid, are critical to prevent or eliminate the often-overwhelming fatigue that so often accompanies HIV disease, as well as to help prevent some forms of neuropathy and brain and spinal cord changes. Maintaining adequate B12 levels also supports the bone marrow’s production of blood cells (crucial to prevent white and red blood cell decreases), and helps protect the heart.

There are countless anecdotal reports from people with HIV that using B-12 supplementation has dramatically improved their lives by its ability to reverse fatigue, often restoring normal energy to people who had previously been so exhausted that their daily functioning had been greatly affected. Many people have also reported significant improvements in memory and mental functioning, improvements that have made a huge difference in daily life. The possibility that B-12 supplementation might also help prevent or reverse the spinal cord changes that can have such devastating effects on some people is also very encouraging.

B-12 and folic acid should always be given together. Doses of B-12 (1000 mcg given daily via pills, or one to several times weekly via prescribable nasal gel or injections) and folic acid (800 mcg daily via pills) may be useful for restoring energy, treating neuropathy, protecting the heart, increasing overall feelings of well being, and boosting mental function (especially when combined with thiamin, niacin, and folic acid, since all four of these B vitamins are needed for normal neurological function) even when tests don’t indicate obvious deficiencies.

Deficiencies of B-12 can result in deterioration of mental function and neurologic damage that will yield such symptoms as memory loss, decreased reflexes, weakness, fatigue, disorientation, impaired pain perception, tinnitus (chronic ringing in the ears), neuropathy, burning tongue, and various psychiatric disorders. B-12 deficiency can also cause canker sores in the mouth, impaired bone marrow function, loss of appetite, and loss of weight, as well as impaired antibody responses to vaccines.

Folic acid deficiency can also cause fatigue and weakness, along with irritability, cramps, anemia, nausea, loss of appetite, diarrhea, hair loss, mouth and tongue pain, and neurological problems. In addition, folic acid deficiency is believed to play a role in the development of numerous and varied types of human cancers.

A combination of B-12 and folic acid deficiency can allow increases in blood levels of homocysteine, a chemical that can damage artery walls and contribute to heart disease.

One of the known causes of B12 deficiency is chronic viral illness with resulting poor gastrointestinal absorption. AZT use may contribute to deficiencies of both B-12 and folic acid. Many other drugs may worsen folate status in the body including TMP/SMX (Bactrim, Septra), pyrimethamine, and methotrexate (all three of which are folate antagonists), as well as phenytoin (Dilantin), various barbiturates, and alcohol (all of which block folate absorption). B-12 deficiency can also worsen folate levels in the body because B-12 is required to change folate into its active form.

NYBC members often supplement with B-right B complex and/or with Methylcobalamin, a form of B12 that is better absorbed by the body than other forms of B12.
http://nybc.wordpress.com/2011/05/28/1159/

Tuesday 14 June 2011

The Age Game

This article by Nancy Travers puts the problems of older people with HIV in the spotlight. In an age where the over 55s are seen as a financial burden on society; it's not easy being grey!

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 over 50 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.
http://hivsymptom.blogspot.com/2011/06/living-with-hiv-for-older-americans.html

Monday 13 June 2011

It's 'NAP' time...(Neuropathy Alleviation Program)

This is a video produced by AIDS Help, a non-profit community-based organization which provides case-managed health care, housing, food, counselling, referral and support services for HIV-infected residents of Monroe County (The Florida Keys). It is promoting a massage-based treatment for neuropathy and doesn't claim to heal the condition, or remove all the pain but just to improve discomfort and pain for neuropathy patients. It all makes sense to me and although you may think that this is something friends and/or family could do,I'm glad they advise doing this under doctor's control. Incorrect massage or acupressure can easily do more harm than good - it's important to be treated by someone who knows what they are doing. Finding that person, or physiotherapy practice...is another matter! Maybe your local HIV organisation or support group can help.


Sunday 12 June 2011

The Pain Problem

Even if you've only ever seen a few Oprah Winfrey shows, you'll probably recognise the name Dr. Oz. Like him or loathe him, he rarely exaggerates or sugar coats issues. His article here for Time magazine, addresses the problem of pain in a structured and recognisable way. He understands that a patient with chronic pain is not the only one affected - that the patient's family and friends are part of the equation too. It's an optimistic article but I fear that most people with neuropathic pain will still feel that they're up against a brick wall in trying to convince both doctors and others, of the extent of the problem. Hopefully he is right that there is a coming renaissance in the area of pain treatment.


The End of Ouch?
By Dr. MEHMET OZ (www.doctoroz.com)

My mission is to help people live the longest and happiest lives possible, and that means lives that are pain-free. But Americans don't do pain well. Historically, if people were not in immediate medical danger, their pain was considered an unfortunate side effect or a collateral consequence of solving a greater problem. I was told my job as a cardiac surgeon was to keep a heart beating by any means. Any pain the patient had later was not my focus.

But all that is changing. I am here to tell anyone who suffers from pain each day, whose life is circumscribed and whose goals are slipping out of reach, that you are at last being heard. We are in a pain renaissance.
First, the biology: Pain is actually an intricate interplay along neurotransmitters in the brain and spinal cord. The body produces natural painkillers like serotonin, norepinephrine and opioid-like chemicals. Chronic pain is any pain that persists beyond the usual healing period. Continuous or intermittent, it can consume all aspects of a person's life.

Second, the numbers: Chronic pain is one of the costliest health problems in the U.S., with an estimated annual price tag of close to $50 billion. Lower-back pain is by far the most common complaint, affecting 70% to 85% of adults at some point and leaving 7 million either partially or severely disabled. Lower-back pain accounts for 93 million workdays lost every year and consumes over $5 billion in health care costs. Arthritis pain affects 40 million Americans, and 45 million suffer from chronic headaches.

But it's not just about your bad back or arthritic knee. People with chronic pain are twice as likely to suffer from depression and anxiety as those without. What starts in your lower back eventually eats away at your soul. You enjoy your loved ones less, and you are less enjoyable to them. If pain affects body, mind and spirit, then treatment must address these three pillars of the human condition.
Unless there is acute nerve damage, pain can't be measured by traditional diagnostic tools. Physicians can predict a pain diagnosis related to injury but are otherwise working largely in the dark, reliant on patient narrative. If you're seeing a doctor for your pain and the problem has not been resolved after six months of treatment, get a second opinion from a specialist. All doctors learn rudimentary pain management in medical school, but few are trained fully or well at it. Prepare for the appointment so you can ask educated questions. The American Chronic Pain Association has a great list of communication tools to help you better verbalize your pain.

Exercise and stretching can often help alleviate pain. Medications such as anti-inflammatories (the ibuprofen family), opioids and antidepressants are effective in the short term, but there are worries about long-term use. Pain-relief medication is one of the most abused areas of the pharmacopoeia. More extreme interventions — surgery, cortisone shots, nerve blockers and local anaesthetics — should be explored as a last resort.

One of the best imports from Eastern medicine — acupuncture — comes from a time before ibuprofen and Bengay. Not everyone agrees on how acupuncture works, but physicians believe it activates endorphin systems, and many consider it a highly effective complementary therapy.
So what does the future hold? Some researchers are exploring the pain-control power of mind quieting and focusing techniques that athletes use to improve performance and that Buddhists preached thousands of years ago. Meditation may benefit chronic-pain sufferers by reducing the emotional impact of their condition. A settling, transcendent state puts the pain in perspective and helps it dwindle in importance. The American Chronic Pain Association (theacpa.org) has a five-minute relaxation exercise that can be effective at helping you let go of the physical stress that exacerbates pain.

As recently as 20 years ago, chronic pain was dismissed as purely psychological — a symptom of a greater mental problem — and it was treated with a terrible blitheness. But today we recognize that pain is a disease. I'm sure 20 years from now; increased understanding will result in even greater advances — and even greater relief. I love a good renaissance.

Mehmet Oz is vice chairman and professor of surgery at the New York Presbyterian Columbia University Medical Center, a best-selling author and the host of the nationally syndicated television talk show The Dr. Oz Show
Comes from: http://www.time.com/time/health/

Saturday 11 June 2011

Acupuncture and neuropathy

Acupuncture for neuropathy relief didn't work for me but it has worked for many people and this article points out that it is a complementary therapy and is best used in conjunction with other forms of neuropathy treatment. If you're feeling frustrated because nothing else seems to work, why not try acupuncture - thousands of years of Chinese medical expertise cannot just be dismissed as 'alternative' and therefore in some way 'less valuable' and the logic behind it is hard to argue against. Recognised acupuncture and acupressure points are now widely used in various Western medicinal treatments in order to deliver targeted medication.

This article and photo are from:
http://painaction.com/


Acupuncture and acupressure for neuropathic pain: An ancient alternative

Written by: Rita Reznikova
Published: January 26, 2010
Reviewed by: Kevin Zacharoff, MD, December 2009


Neuropathic pain is a kind of chronic pain that usually results from damage to or malfunction of the nervous system. This makes it different from the usual type of pain that is a direct result of injury. Successful treatment for neuropathic pain can be difficult; often, the approach is with a combination of medications, physical and psychological methods, and complementary and alternative practices. This article will focus on acupuncture and acupressure.

What you need to know

Acupuncture and acupressure are ancient Chinese medical treatments.
These techniques may complement (be used with) other medical treatments for neuropathic pain.
Researchers believe that acupuncture and acupressure work on “pressure points” throughout the body, in order to improve the flow of energy.

Acupuncture and acupressure are used to treat many different medical problems, including neuropathic pain. If you’ve ever thought about trying them, you are not alone: According to the 2007 National Health Interview Survey, 3.1 million Americans said that they had visited an acupuncturist in the previous year.

Always talk with your health care provider before starting any complementary treatments: You need to make sure that these treatments won’t conflict with your other care, and that there are no medical reasons to avoid using them.

What is acupuncture?

Acupuncture is an ancient Chinese tradition that dates back thousands of years. In Chinese belief, an energy called qi (“chee”) runs throughout the body. When something blocks or slows down the flow of qi, a person may feel pain. An acupuncturist treats this pain by placing thin needles at special points on the body, to make sure that the flow of qi is clear.

Acupressure is a similar type of treatment, but instead of needles, hand pressure is applied to these same points of the body to increase the energy flow.

How do acupuncture and acupressure feel?

You probably know that acupuncture uses needles, and the thought of someone inserting many thin needles into your skin might be scary. While some people may feel a slight twinge when acupuncture needles are placed, many do not. That’s because acupuncture needles are almost as thin as a piece of thread that’s used for sewing; they are much thinner than regular medical needles. In fact, you may feel so deeply relaxed after the needles are placed that you might even fall asleep during the treatment.

Acupressure, on the other hand, feels more like a deep tissue massage. The therapist’s hands press down on certain muscle areas of your body, called trigger points. The goal of the treatment is to create an all-around feeling of relaxation in that area.

How can acupuncture or acupressure help neuropathic pain?

Both acupuncture and acupressure target specific places called pressure points on your body.

Acupuncture, in Chinese tradition, is viewed in the context of the body’s overall energy flow. In order to relieve your pain, an acupuncturist may place needles near the areas where you hurt, as well as in other parts of your body. This may reduce pain by unblocking your flow of energy. In Western medicine, though, experts aren’t looking at “energy flow”; they feel that the placement of acupuncture needles helps to stimulate the nerves and surrounding tissues; this supposedly helps to change the way that the brain understands neuropathic pain signals.

Acupressure has a different approach. An acupressure therapist relaxes pained muscles by pressing directly on your body’s trigger points. This pressure may help to relieve the tingling, burning, or “prickly” feelings in the body that are associated with neuropathic pain. It may also help with other symptoms, like dull pain or stiffness.

There is some evidence that both acupuncture and acupressure may release a type of molecule called opioid peptides in your brain. These molecules have a pain-relieving effect, almost like ‘natural narcotics.’ Other studies even show that acupuncture and acupressure may help your immune system.

While some researchers believe that these treatments may be helpful, other experts aren’t so sure. Providers may use a mix of acupuncture or acupressure techniques, so these therapies may be better for some types of pain than others. Talk to your health care provider to see which treatment might be right for you.

The National Center for Complementary and Alternative Medicine (NCCAM), a division of the National Institutes of Health, is currently helping with a number of studies about the use of acupuncture and acupressure for different types of conditions.

Risks

While experts don’t fully know how acupuncture and acupressure work, these treatments can still be safe and effective for neuropathic pain when they’re done by licensed therapists. Side effects are rare, although they can occur in certain situations: For example, there may be problems if acupuncture needles are not sterile, or if your pain actually worsens as a result of acupuncture or acupressure treatment.

If you decide to try one of these therapies, always speak first with your health care provider. Your provider may also have suggestions on how to find a skilled professional in your area.

Friday 10 June 2011

Holiday Tips

Apologies to all Southern Hemisphere readers but this will apply to you in six months time
Apologies too for stating the obvious
Tips and Tricks
To Enjoy the Summer

Neuropathy should not stop you from enjoying the
outdoors this summer. Here are some tips and tricks to
keep in mind:


• Before going away, check your medications: have you got enough? Have you got a medical passport if going to another country? If necessary, translate a few key words into the language of the destination country - you never know when you'll need a doctor or a chemist.

• Drink lots of fluids and prevent dehydration

• Wear light, non-constricting clothing to beat the heat

• If you can afford it, why not indulge in a pedicure before you go away - smooth and well-clipped nails will avoid unnecessary infections if you damage them

• Invest in good, comfortable shoes that provide just the right amount of support, also for the beach and other surfaces

• Before putting on shoes, check them for any loose objects or rough edges (especially if new for the hols!Break 'em in first)

• Protect your feet even in the house; despite the temptation to take the cool option, take care walking barefoot unless you're sure you're not going to cut yourself or run into infections.

• Prevent falls by laying out your furniture so that walkways are free of clutter, especially in unfamiliar holiday accommodations. I know you're suffering from foot pain, or numb feet and are not blind but you'd be surprised how much walking you take for granted in your own house.

• Pace yourself when you are outdoors, especially activities requiring repetitive movements like tramping round a historic site. You know your own limits - take rests where needed and remind your friends that you can only do what you can do

• Inspect your feet and hands daily for breaks in skin; address them
before they become infected.

• Be aware of temperature changes - the neuropathic body will need to adjust

• Be aware of the effects of dietary change

• You know what alcohol can do to your balance - everything in moderation eh!

• Try to relax as much as possible - it's a holiday; it's supposed to take your mind off the every day grind not add to your worries!

Thursday 9 June 2011

Flu shots and neuropathy

Somewhere around the world, it will be approaching flu season and the annual question as to whether it's advisable to have the shot. HIV patients are used to reading articles which cast doubt on the yearly vaccine and you will come across internet articles which advise against for neuropathy patients too. This article from Neuropathy News seems to clear the way for most people to safely have the flu jab and whatever flu is currently making the headlines in any given year, is probably a worse alternative.

Influenza Vaccinations in Patients with Neuropathy:
Should You Get a Flu Shot?
BY KENNETH C. GORSON, M.D.

The perennial question of whether or not to get a flu shot arises every fall with the reemergence of the influenza virus in the general population. Many neuropathy patients are uncertain whether they should receive a vaccination. For the vast majority of patients with peripheral neuropathy, the answer is yes.

In an average year, the influenza virus is responsible for more than
200,000 hospitalizations and 36,000 deaths. There is no evidence that the influenza vaccination aggravates neuropathy symptoms in patients with neuropathy resulting from diabetes mellitus, nutritional deficiencies, kidney,liver or thyroid disease, celiac disease, various connective tissue disorders,HIV infection, or exposure to toxins. In fact, the Center for Disease Control (CDC) urges these patients to receive an annual flu vaccination because they are at high risk of developing serious complications from infection with the influenza virus. Similarly, there are no neuropathic complications of vaccination for those with an inherited neuropathy or neuropathy of an unknown cause (“idiopathic” neuropathy).

There is, however, some controversy around the administration of the flu vaccine to patients with immune neuropathies—patients with a history of Guillain-Barré Syndrome (GBS) or chronic inflammatory demyelinating polyneuropathy (CIDP). The flu vaccination effectively prevents influenza infection by stimulating the patient’s immune system to generate antibodies directed against the virus. In patients with immune neuropathy, there is a theoretical concern that this immune stimulation may actually trigger GBS in a healthy individual or cause a relapse in patients with a history of GBS or CIDP.

In 1976, there was a highly publicized relationship between the Swine flu vaccine and an excess number of GBS cases within weeks of the vaccination. This observation seems restricted to that specific vaccine, as another large population study demonstrated that the vaccine administered during the 1993-1994 flu season was associated with only one excess case of GBS (i.e., greater than the background frequency of GBS in non-vaccinated individuals in the general population) per million people vaccinated. This extraordinarily low risk of influenza vaccine associated GBS also was
confirmed in a recent study in the United Kingdom. Furthermore, because up to two-thirds of patients with GBS have reported a preceding viral illness in the weeks before the onset of the neuropathy, the flu vaccination theoretically might reduce the risk of contracting GBS. Therefore, healthy individuals without neuropathy should have little concern about developing
GBS after a flu vaccination.

The CDC recommends that those rare patients who developed GBS after a flu vaccination should not be vaccinated. Many neuromuscular experts also recommend that GBS patients should not be vaccinated for at least one year after recovery, but this is an arbitrary time interval. Similarly, those with active CIDP may wish to avoid vaccination, but this decision needs to be balanced with the risks of infection associated with advanced age, other chronic medical conditions, and the potential for triggering a relapse as a consequence of infection with the influenza virus. Relapses after vaccination are usually mild and respond to standard therapies for CIDP.

Below are the current CDC recommendations for influenza vaccination
(also available on the CDC website). People who should get vaccinated each year include:

Children aged six months until their 19th birthday
Pregnant women
People 50 years of age and older
People of any age with certain chronic medical conditions (chronic
lung, heart, liver of kidney diseases, blood disorders, diabetes mellitus)
People who live in nursing homes and other long term care facilities
People who live with or care for those at high risk for complications
from the flu, including:
— healthcare workers
— household contacts of persons at high risk for complications from
the flu, and
— household contacts and out-of-home caregivers of children less than
six months of age (these children are too young to be vaccinated).


Ultimately, the decision to receive the flu vaccine needs to be individualized in consultation with your neurologist who is familiar with these issues.

Kenneth C. Gorson, M.D. is Professor of Neurology at Tufts University
School of Medicine. Dr. Gorson also serves on the Association’s Medical
Advisory Committee.