Wednesday, 9 September 2020

COVID-19 And Neuropathy - A Podcast And Personal Account To Clear Some Of The Confusion

Today's post/podcast from (see link below) is a very useful question and answer discussion about what is currently known about the relationship between neuropathy and Covid-19. You get to hear the views of an neuropathy expert and neurologist and what she has to say may well clear up some of the issues that have been troubling you during the current pandemic. We're all learning about the potential effects of Covid on neuropathic problems, pretty much as they develop - it's that new! Does neuropathy itself put you at greater risk from the virus for instance?...definitely worth a listen (click on the green arrow on the podcast).


The NeuropathyCommons Podcast

NEW! The NeuropathyCommons Podcast brings together experts to discuss current topics of interest to patients dealing with peripheral neuropathy. Learn about the latest research and more, from neurologists and scientists working in the field.

Episode 1. COVID-19 and Neuropathy

In the first episode of the NeuropathyCommons Podcasts, your host Dr. Alex Chamessian chats with Dr. Anne Louise Oaklander, a leading expert on peripheral neuropathy and founder of Learn about this website for patients, and listen to their discussion about neuropathy in the time of a pandemic. What do neuropathy patients need to know about the nerve disease and COVID-19?

Note: In the podcast, Dr. Chamessian and Dr. Oaklander discuss a new report on how the Sars-CoV-2 virus might enter nerve cells. Follow the link below to access the preprint. This paper has now been accepted for publication in the peer-reviewed journal PAIN. 
 ACE2 expression in human dorsal root ganglion sensory neurons: implications for SARS-CoV-2 virus-induced neurological effects(link is external).
 Shiers S, Ray PR, Wangzhou A, Esteves Tatsui C, Rhines L, Li Y, Uhelski ML, Dougherty PM, Price TJ. bioRxiv. May 29, 2020. 

As a bonus, below is a personal account of a neuropathy patient's experience of having Covid-19 along with her neuropathy problems - definitely worth a read - other people's experiences can only prepare us for what we may later experience for ourselves.

A Small-Fiber Polyneuropathy Patient Shares Her COVID-19 Experience

I have small-fiber polyneuropathy and am a patient of Dr. Oaklander. I am in my twenties and was on high dose steroids for more than a year, but am currently not on any immunosuppressants.

I had COVID-19. The threat of getting a sickness about which so little is known, when I already have a rare neurologic disease, felt very scary. I want to talk about my experience, and also share some practical things I did while I was sick that helped me feel better. I also want to emphasize that while this sickness was scary to have, I am okay!

What it felt like

Three weeks ago, I started showing signs of COVID-19. It began as a sore throat. I had a runny nose, so I did not think much about it. The next day I suddenly lost my sense of taste and smell. Everything tasted dull or kind of sour. The following morning, I woke up with a mild fever. I started to quarantine in my bedroom. As the days progressed, my fever persisted, and I began to have intense body aches.

After four or five days of symptoms, my sore throat felt like it was sinking down into my chest. I started to cough, a very dry cough. It hurt intensely each time I coughed.

With the cough came a strange chest tightness. My ribs ached. My lungs felt tight and raspy. I could not take a full deep breath in. The entire time I was actually getting enough air, and had good oxygen levels in my blood, but it felt as though my lungs could not take the air in, almost as if I were drowning. I have never before experienced such a sensation.

Days six and seven were the days I felt scared, but then I started to feel better. My fever and the worst of the pain in my lungs went away. The chest tightness and cough slowly started to improve after that. I am now basically back to full health, although some aches continue, and my lungs hurt if I walk for too long outside.

Throughout my sickness, I was definitely worried that my small-fiber polyneuropathy would flare. But so far, I have not experienced any neurological symptoms.

What helped 

1. I was quarantined for 10 days in my room. There are two bathrooms in my house, so I was able to have my own bathroom. My roommates brought me meals. One of my roommates would wash all the dishes with gloves on at the end of the day. These precautions felt extreme, but none of my roommates got sick.

2. I drank a ridiculous amount of water and tea throughout the sickness. I got myself an electric tea kettle to keep in my room, so that I could make myself tea anytime. I also kept snacks in my room so that whenever I felt hungry, I could eat. I made sure that, even though my sense of taste and appetite was off, I was still eating enough.

3. When my chest would hurt a lot, I would rub my chest and neck with Vicks® VapoRub™ and then use a heating pad. I would then take slow gentle breaths. This helped a lot!

4. I had a few people I would FaceTime with regularly during the days. This was important. Even when my lungs felt very painful and short of breath, I was still able to carry on a conversation. This helped me know I was getting enough oxygen. Also, having people around, even virtually, made me feel less isolated.
Additional Resources for Neurology Patients

For trusted information on the pandemic, visit the American Academy of Neurology’s Brain&Life COVID-19 (Coronavirus) and Neurologic Disease Resource Center.(link is external)

Sunday, 30 August 2020

Some Serious Research Into CBD And Hemp Products For Nerve Pain

Today's post from the ever-reliable (see link below), looks at a subject that will be familiar to many people trying to find solutions for their neuropathic problems - CBD oil. There are many articles relating to CBD oil here on the blog (see Search button) and they each contribute a little more information to the debate as to whether it's an effective treatment or not. This one is a little different in that the information is definitely more science and research-based and free of the jargon and dialogue that has emerged as typical of the hype surrounding CBD oil, hemp products and cannabis in general. It may be worthwhile reminding readers that CBD (or hemp) oil contains just a fraction of the substance THC, that normal cannabis products contain and as such can be evaluated without the distraction of any 'high' sensations that a joint will give you. So many people have sworn by the positive effects of CBD oil that science has been forced to pay it some serious attention in the last couple of years, especially as it seems to be a viable alternative to opioids which have generated so much bad publicity recently. This article reveals the results of studies by the university of New Mexico, which show that CBD/Hemp products can certainly have a beneficial influence on nerve pain. The only caveat is that they're still not sure of the long-term effects of taking CBD oil-based treatments but that's not surprising considering how brief the time is during which these products have emerged as serious contenders for neuropathy pain relief. This all said, there's CBD oil and there's CBD oil!! You know how it goes...for every new advancement in this field, there are countless 'fake' and uncertified products all over the internet. As always...let the buyer beware! Do your research and check everything against information from different sources. Criminals are all too ready to rip you off and take your money but part of the responsibility lies with the buyer. Don't let your desperation for pain relief lead you into making hasty purchases, (however cheap they seem in relation to more reliable products) which could endanger your health. And advertising jargon is just that...just because they say it's the best doesn't necessarily make it so! Remember also, everybody's nerve problems are unique to themselves, so what works for some may not work for others. However, reliable and controlled CBD/Hemp products may offer you workable options, which weigh up positively compared with opioids and other chemical pain killers, which we know, have limited success for many patients.

Legal cannabis hemp oil effectively treats chronic neuropathic pain 

Date: May 20, 2020 
Source: University of New Mexico


Researchers examine the effectiveness of consuming hemp oil extracted from the whole cannabis plant using a chronic neuropathic pain animal model. Researchers showed that legal cannabis hemp oil reduced mechanical pain sensitivity 10-fold for several hours in mice with chronic post-operative neuropathic pain.


Researchers at The University of New Mexico (UNM) showed that legal Cannabis hemp oil reduced mechanical pain sensitivity 10-fold for several hours in mice with chronic post-operative neuropathic pain.

Distinguished from its still largely criminally prohibited cousin, "hemp" refers to Cannabis plants with less than 0.3 percent tetrahydrocannabinol (THC) per mass. Hemp is now federally legal to produce and consume in most regions throughout the United States (U.S) as a result of the Hemp Farming Act.

This major breakthrough in cannabis prohibition now enables millions of Americans the ability to access a natural, effective, and relatively safe alternative option for treating chronic pain. Conventional pharmacological drugs, namely opioids, are driving the leading form of preventable deaths and conventional medical errors are the third leading cause of death in the U.S.

The University of New Mexico has conducted a series of recent studies testing the effectiveness and safety of consuming the Cannabis plant, but this is the first study measuring the therapeutic potential of legal hemp oil with low THC levels.

"Cannabis plants with low THC are still psychoactive, but tend to result in less psychedelic experiences, while still offering profound and often immediate relief from symptoms such as pain, anxiety, and depression," says co-researcher, Dr. Jacob Miguel Vigil, associate professor in the UNM Psychology Department.

Using a chronic neuropathic pain model that exposes mice to post-operative neuropathic pain equivalent to several years of chronic pain in human clinical patients, the researchers were able to examine how hemp oil influences momentary pain sensitivity to the affected region. For several hours after Cannabis consumption the mice demonstrated effective pain relief, approaching the mechanical pain sensitivity of naïve control mice that did not undergo the surgical operation.

"Our lab utilizes a unique nerve injury model mimicking human neuropathic pain that has allowed demonstration of hemp's reversal of the pain related behavior" said one of the lead investigators, Dr. Karin N. Westlund, Department of Anesthesiology, their article titled "The Therapeutic Effectiveness of Full Spectrum Hemp Oil Using a Chronic Neuropathic Pain Model," published in the journal Life.

Studies in animals can be superior to clinical trials because they circumvent human biases and expectancy effects, or perceptual and cognitive reactions to enrollment in cannabis-themed experiments. Several studies measuring the effects of cannabis in humans observe patients reporting psychedelic experiences, whether or not they received the active cannabis agent, otherwise referred to as the 'placebo effect.'

The study examined the effectiveness of "LyFeBaak" hemp oil, produced by Organic-Energetic Solutions, which has been available for legal purchase in New Mexico since 2019. "We grow hemp that is optimized to potentiate the plants utmost health and vitality through hypermineralization techniques, rather than merely plants that are grown in a state of fight-or-flight, which unfortunately is common in the cannabis industry. These techniques have enabled us to produce hemp products that patients swear are effective for treating dozens of mental and physical health conditions. The new changes in hemp laws are now allowing us to test these claims," adds co-author and hemp grower, Anthony L. Ortiz.

"Hemp plants contain numerous therapeutic constituents that likely contribute to analgesic responses, including terpenes and flavonoids, which in theory, work together like members of a symphony, often described as the entourage effect," says fellow researcher, Jegason P. Diviant. Several clinical investigations have shown that medications based on synthetic cannabis analogues and isolated compounds tend to offer lower reported symptom relief and a greater number of negative side effects as compared to whole plant, or "full-spectrum" Cannabis flower and plant-based extracts.

The authors do caution that few studies exist on the long-term use of hemp oil, due mostly to historical federal prohibition laws in the U.S. "However, this is an extremely exciting time in modern medical discovery, because the average citizen now has legal access to a completely natural and effective medication that can be easily and cheaply produced, simply by sticking a seed in the ground and caring for it as you would any other important part of your life," says Vigil.

This investigation was supported in part by private donations from individuals to The University of New Mexico Medical Cannabis Research.

Story Source:

Materials provided by University of New Mexico. Note: Content may be edited for style and length.

Journal Reference:
Jacob M. Vigil, Marena A. Montera, Nathan S. Pentkowski, Jegason P. Diviant, Joaquin Orozco, Anthony L. Ortiz, Lawrence J. Rael, Karin N. Westlund. The Therapeutic Effectiveness of Full Spectrum Hemp Oil Using a Chronic Neuropathic Pain Model. Life, 2020; 10 (5): 69 DOI: 10.3390/life10050069

Cite This Page:

University of New Mexico. "Legal cannabis hemp oil effectively treats chronic neuropathic pain." ScienceDaily. ScienceDaily, 20 May 2020. .

Monday, 17 August 2020

How Worried Should We Be? Links Discovered Between Covid-19 And Nerve Damage

Today's post from MedPageToday (see link below) may justifiably raise some important questions for people living with neurological damage and neuropathy in general. As with many other serious conditions at the moment, neuropathy has to take a back seat (even further back than normal!) as the world struggles to deal with Covid-19 and many patients are 'putting up with symptoms' instead of contacting their doctor, because they feel guilty that they're taking up valuable time and resources needed to combat the virus. Until a vaccine is found, this situation for chronic illness patients may continue for sometime yet.

However, if you read this article you'll see that new and emerging evidence suggests that the virus may significantly attack the nervous system itself and this becomes more noticeable in the recovery process after contracting the virus. This is alarming and we should mention it to our doctors the next time we make contact because it's vital that they too are aware of these findings. During the other corona virus outbreaks of the last few years (SARS, MERS etc), neurological damage was also found to be a consequence of the viral infection but maybe because both strains didn't develop into pandemics, the nerve damage became somewhat of a side-note. Now we have a world-wide outbreak and if we're unlucky enough to become infected, then our doctors need to be aware of potential nerve damage, especially with existing neuropathy patients - it could save your life. There are further research links at the bottom of the article but you may also want to follow the following link for further information:-,-causing-neurological-conditions-and-even-viral-encephalitis
There we are then...something else for us to worry about but knowledge is power and not a reason to panic! That we're (along with our doctors) aware of the possibilities, ensures that we're not surprised in the future.

First Report of COVID-19 Neurologic Symptoms in China -  CNS, peripheral nervous system, muscle injury seen in case series

An illustration of the coronavirus entering a cartoon mans airways and his brain
More than a third of 214 confirmed COVID-19 cases in China had neurologic symptoms, researchers said.

Acute cerebrovascular events, impaired consciousness, and muscle injury were seen in 36.4% of patients and were more common (45.5%) in patients with severe infection who required mechanical ventilation, reported Bo Hu, MD, PhD, of Union Hospital and Huazhong University of Science and Technology in Wuhan, and colleagues.

Neurologic symptoms included central nervous system (CNS) manifestations such as dizziness, headache, impaired consciousness, acute cerebrovascular disease, ataxia, or seizure; peripheral nervous system manifestations such as taste and smell impairment, vision impairment, or nerve pain; and skeletal muscular injury manifestations.

"For those with severe COVID-19, rapid clinical deterioration or worsening could be associated with a neurologic event such as stroke, which would contribute to its high mortality rate," the team wrote in JAMA Neurology. "During the epidemic period of COVID-19, when seeing patients with these neurologic manifestations, clinicians should consider SARS-CoV-2 [the virus that causes COVID-19] infection as a differential diagnosis to avoid delayed diagnosis or misdiagnosis and prevention of transmission."

COVID-19 and severe acute respiratory syndrome (SARS), which first appeared in China in late 2002, are similar in many ways clinically, noted S. Andrew Josephson, MD, of the University of California San Francisco, and colleagues, in an accompanying editorial.

"Although the SARS epidemic was limited to about 8,000 patients worldwide, there were some limited reports of neurologic complications of SARS that appeared in patients 2 to 3 weeks into the course of the illness, mainly consisting of either an axonal peripheral neuropathy or a myopathy with elevated creatinine kinase," the editorialists wrote. Pathology showed that patients with SARS had widespread vasculitis in many organs, including striated muscle, "suggesting that the clinical features in these neuromuscular patients might be more than just nonspecific complications of severe illness," Josephson and co-authors continued.

For the study, Hu and colleagues reported data on 214 consecutive laboratory-confirmed COVID-19 patients between Jan. 16 and Feb. 19, 2020. Patients had an average age of about 53 ± 15.5 years, and 41% were men.

About 41% of patients had severe infection and required mechanical ventilation. Those with severe infection were older, had more underlying disorders, especially hypertension, and showed fewer typical symptoms of COVID-19 such as fever and cough compared with people with non-severe infection.

Patients with more severe infection had a higher occurrence of acute cerebrovascular diseases (5.7% vs 0.8%), impaired consciousness (14.8% vs 2.4%), and skeletal muscle injury (19.3% vs 4.8%) than people with non-severe infection.

Of the 214 patients, 12 (5.6%) had taste impairment, 11 (5.1%) had smell impairment, and three (1.4%) had vision impairment. Five patients reported nerve pain.

Most neurologic manifestations occurred early in the illness; the median time to hospital admission was 1 to 2 days. Some patients without typical COVID-19 symptoms came to the hospital with only neurologic manifestations as their presenting symptoms, the researchers noted.

Angiotensin-converting enzyme 2 (ACE2) has been identified as the functional receptor for SARS-CoV-2, and "the expression and distribution of ACE2 remind us that the SARS-CoV-2 may cause some neurologic manifestations through direct or indirect mechanisms," the investigators wrote. "Autopsy results of patients with COVID-19 showed that the brain tissue was hyperemic and edematous and some neurons degenerated."

Neurologic injury has been confirmed not only in SARS, but also in Middle East respiratory syndrome (MERS), Hu and co-authors noted. CNS symptoms were the main form of neurologic injury in COVID-19 in this study, and the pathologic mechanism may be from the CNS invasion of SARS-CoV-2, similar to SARS and MERS viruses, the team speculated.

"As with other respiratory viruses, SARS-COV-2 may enter the CNS through the hematogenous or retrograde neuronal route," the researchers suggested. "The latter can be supported by the fact that some patients in this study had smell impairment."

People with severe infection had higher D-dimer levels than patients with non-severe infection, the investigators observed. Patients with muscle symptoms had higher creatine kinase and lactate dehydrogenase levels than those without muscle symptoms, and creatine kinase and lactate dehydrogenase levels in patients with severe infection were much higher than those of patients with non-severe infection.

Whether axonal neuropathy is part of COVID-19 is unknown from this study; the researchers could not obtain nerve conduction studies or lumbar punctures. "Given the likely shared vasculitic pathology of SARS and COVID-19, it seems probable that further studies will reveal neuropathy as another rare finding in COVID-19," Josephson and co-authors pointed out.

The more dramatic neurologic symptoms -- stroke, ataxia, seizure, and depressed level of consciousness -- were more common in severely affected patients, the editorialists observed. But these associations may reflect that people with more severe complications are more likely to have medical comorbidities, especially vascular risk factors like hypertension: "The occurrence of cerebrovascular events in critically ill patients with underlying high blood pressure and cardiovascular disease is therefore potentially unrelated to a direct effect of the infection itself or an inappropriate host response," Josephson and co-authors wrote.

They added: "It is clear that this small series does not reflect the entire spectrum of neurologic disease in COVID-19 disease, and much is left to be learned with thorough neurologic testing in large data sets of patients with COVID-19."

The research was supported by the National Key Research and Development Program of China, the National Natural Science Foundation of China, and Major Refractory Diseases Pilot Project of Clinical Collaboration with Chinese and Western Medicine.

The researchers reported no conflicts of interest.

The editorialists reported relationships with the National Institute of Mental Health, the Weill Institute for Neuroscience, the Brain Research Foundation, the George and Judy Marcus Fund for Innovation, Viela Bio, Mylan, Bionure, Neurona, Pipeline Therapeutics, and Inception Sciences.

Monday, 10 August 2020

Are Neuropathy Patients Prepared For The Corona Virus?

Although published in March 2020, today's short post written by Ezekiel Lim (see link below) describes the current situation regarding Covid-19 and its relationship to neuropathy perfectly well. Not much has changed since March least on the face of it...yet we all know the world has possibly been changed forever as a consequence of the spread of the virus. Nevertheless, the advice given here is both relevant and useful and remains a good base to work from in the midst of the chaos Corona has caused. People with other serious conditions (including neuropathy) have a responsibility to follow the guidelines to protect others but...let's face it... our first responsibility is looking after ourselves. You may think from the images of people thronging to the beaches and bars and generally ignoring social distancing, that the crisis is over its peak. Far from it folks! This virus is here to stay and a cure may never be found (just look at HIV for instance) so learning how best to live with it is crucial. There's no room at all for complacency (take note Mr President) because the virus ignores social and national boundaries - like any virus, it will take advantage from any drop in our guard and be under no's people who spread the virus...the virus itself just hitches a ride. Above all, it's dangerous and can make you seriously ill and if you're one of the unlucky can kill you too.
This article is worth a read, if only as a reminder to take the necessary precautions. 

Being Prepared: Neuropathy Patients, Social Distancing, and the Coronavirus

Being Prepared: Neuropathy Patients, Social Distancing, and the Coronavirus

In Columns, Rumination and Response - a Column by Ezekiel Lim.

By now the virus that causes COVID-19 has expanded to numerous countries, causing a global crisis. Because older people and those with pre-existing health conditions are at a higher risk of getting sick due to the virus, it is important for patients with familial amyloid polyneuropathy and peripheral neuropathy symptoms to practice diligence and to adopt precautionary measures such as social distancing and self-quarantining.

Caregivers and family members may be required to help neuropathy patients manage social distancing and self-quarantining methods to prevent the potential transmission of the virus to the patient.
While more information regarding the coronavirus surfaces daily, the new strain is somewhat mysterious by nature. However, some commonly known high-risk factors include lung disease, heart disease, and diabetes. Peripheral neuropathy symptoms may be caused by diabetes, so patients and their caregivers must not take any chances with potentially coming into contact with the virus.

Managing the coronavirus quarantine

If possible, those with familial amyloid polyneuropathy or any other neurodegenerative disease must be diligent in washing their hands frequently and practicing social distancing. Caregivers also must be diligent in washing their hands and avoiding close contact with other people to minimize the potential transfer of the virus.

Patients who live with family members should entrust all food shopping and essential errands to relatives or caregivers. If at all possible, patients, caregivers, and family members should consider having food and groceries delivered to the home. This may minimize the potential for a patient to become infected.
In my family, my relatives have taken the necessary steps to stock my mother-in-law’s home with groceries and essential items. My mother-in-law has stocked up on masks to protect herself from any droplets and airborne particles that may present the risk of infection, even inside the house.

For patients and caregivers, masks, soap, hand sanitizer, and disinfectant wipes may offer peace of mind inside the home.

Maintaining mental and physical health

Because those with preexisting conditions are particularly at risk, neuropathy patients and caregivers should err on the side of caution when taking preventive measures to limit potential exposure to the coronavirus. Patients may also want to ensure that they are maintaining a healthy diet and good mental health.
With the uncertainty of the times, patients still may want to interact with friends, family, and their support communities, even if it is by phone, Skype, or other software.

What are you doing to prepare for COVID-19? Please share in the comments below. 

Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.

Friday, 24 July 2020

Back To The Core: Neuropathy And HIV

Today's post from the NewYorkBuyersClub (see link below) returns to the core subject of this blog and covers HIV-related neuropathy problems. However, as you know, neuropathy is the medical condition and HIV in this case, is just one particular cause out of more than 100. For that reason, the information contained here is relevant for almost everyone suffering from severe neuropathy and is worth reading, to extend your understanding and maybe provide more options for treatment. That said, it's a doozy and you may feel somewhat overwhelmed by the sheer amount of information provided. 

Apart from that, it recommends various treatment options that can be prohibitively expensive. If you invest in just a few supplements for instance, you can be faced with a hefty bill at the check out. All I can really say is that if you buy, you should buy the best you can afford - cheap options may not help you very much. Therefore, it's worth reading this article carefully and then discussing what interests you, with your doctor or at least a qualified professional from the health supplement field. The internet can be a minefield so expert advice is pretty much essential - check and double check is my advice. All that said, this article is fantastically detailed and helpful for long term neuropathy patients but you may need to read it in bite-sized and reader-friendly chunks - your brain can only take in so much information at one time.

What's the Problem, and How Do You Diagnose It? 24/07/2020 (originally published December 2014)

There are two main types of neuropathy that may develop in HIV+ people. One is the more commonly experienced peripheral neuropathy which affects the nerves in the arms, legs, feet, and hands. Researchers have reported that peripheral neuropathy may occur in almost half of those living with HIV. Peripheral neuropathy results from nerve damage that can cause numbness, burning, tingling, over-sensitivity, and sometimes severe pain in the hands, feet, arms and legs.

 The symptoms may range from extremely mild (perhaps just a small amount of numbness in the toes) to quite severe (agonizing feelings of burning and pain from nothing more than a sheet touching the leg). It is common for numbness or tingling that begins in the toes to eventually spread upwards into the legs, sometimes accompanied by similar symptoms in the fingers that may spread upwards into the arms. What may begin with mild weakness in the foot muscles may become severe over time. With more extreme neuropathy, many will experience severe burning pain in the extremities. Some people will experience sharp shooting pains that travel up the legs, a condition that may occur more frequently when the person is at rest. Foot pain can sometimes be so severe as to make walking difficult. Some people also experience severe muscle cramping, hair loss on the legs, and reddened skin.  

In HIV+ people, there may be many different nerves affected in a given area (as with peripheral neuropathy in the feet and hands), or there may be a mononeuropathy, an injury to one specific nerve, sometimes caused by HIV-induced inflammation. This might cause carpal tunnel syndrome (pain in the wrist), or “scapular winging,” a condition in which one shoulder will appear to be dropped, or will be sticking out from the back, causing shoulder and mid-back pain.  

The other most common form of neuropathy experienced by some HIV+ people is autonomic neuropathy, a condition in which the autonomic nerves (those that work in many automatic body processes) are affected. Autonomic neuropathy seems to be far more prevalent in people living with HIV than is generally recognized. One study found that 13 out of 17 HIV+ people tested (76.5 percent) had developed autonomic neuropathy, 11 of whom were symptomatic. The two most common symptoms caused by autonomic neuropathy are sexual dysfunction (impotence in some men), and digestive problems. A third is a potentially life-threatening effect called orthostatic hypotension where the blood pressure becomes so low that blood flow to the brain is affected. This sometimes causes fainting or weakness upon standing up. Autonomic neuropathy may also affect bladder function, causing urinary incontinence (inability to “hold it”), a symptom that can have a very debilitating impact on quality of life.  

Digestive problems can occur when the nerves needed to activate the muscles to propel food out of the stomach and through the intestines are adversely affected. The result can be gastrointestinal motility problems in which the stomach fails to empty properly or food is not properly moved through the intestines. This can cause intestinal cramps, stomach discomfort, and nausea. With severe autonomic neuropathy, morning nausea that results in vomiting up the food eaten the night before may occur. A feeling of bloating and heaviness after meals is also common, as is the feeling that food sits in the stomach for long periods of time. In other words, there may be a feeling that the food eaten for lunch is still sitting in the stomach when it's time for dinner, and so on. Autonomic neuropathy will sometimes result in diarrhea. 

 Although research studies will use nerve biopsies to ascertain the extent of nerve damage, this has seldom been done for individuals. However, recent studies have measured nerve damage via a small skin biopsy. It is possible that this assessment may become more common. Physicians most often use a combination of your own self reporting of symptoms, accompanied perhaps by simple tests in which you are poked or prodded in certain ways to ascertain whether you respond appropriately to the stimuli. Simple tests include comparing ankle and knee reflexes, or testing the sensations that are perceived from the toes up the leg when a pin is poked on the skin. A tuning fork may also be used because it can show a reduced vibration in a foot with neuropathic damage. Sensitivity tests that assess your reaction to different pressures are also sometimes used.


What are the Causes? 

Although all the specifics of how nerves are damaged in HIV disease are not well understood, it is clear that neuropathy has two main causes in HIV+ people: the virus itself (and the body’s reactions to it which lead to oxidative stress and inflammation) and drugs. In many people, both of these will contribute to the development of neuropathy. In some cases, neuropathy may already exist (due to the effects of HIV disease) but the symptoms which make it apparent will only become noticeable when the condition is worsened by the addition of neuropathy-inducing drugs. Careful assessment to determine what causes are present and are most likely to be contributing to the development or worsening of neuropathy is important.  

HIV and the body’s responses to it can cause neuropathy. Long before antiretroviral therapy existed, there were reports of neuropathy in HIV+ people. A study that followed viral loads and CD4 cell counts in a large cohort of HIV-infected men who had not progressed to AIDS found that viral load over 3000 and CD4s below 500 were predictive of neuropathy. The study authors suggested that effective suppression of HIV might reduce the risk of developing neuropathy. In another study, the impact of HAART (mostly indinavir-based) on neuropathy-associated pain was assessed in 49 HIV+ people. After eight months, patients whose viral loads decreased in response to treatment also had significant improvements in pain.  

Although the ways in which HIV disease results in nerve damage are not well defined, it may result from some combination of directly caused damage to the nerves, as well as damage created by the body-wide inflammation and oxidative stress that are common in HIV disease. Oxidative stress—a condition that occurs when the body’s supply of antioxidants is insufficient to counter the various body processes (including the body’s immune responses to HIV) that generate unstable molecules called free radicals and reactive oxygen species—is extremely common in HIV disease. It can contribute to damaging many different cells and tissues in the body, and may contribute significantly to nerve damage. The elevated levels of certain pro-inflammatory cytokines that are produced in response to HIV result in body-wide inflammation which may also contribute to nerve damage. 

 Neuropathy is often caused by drugs. The most common antiretroviral drug sources of nerve damage are the “d” drugs: d4T (Zerit®), ddC (Hivid®) or ddI (Videx®). Hydroxyurea (Hydrea) can also cause neuropathy. Less commonly, 3TC (Epivir®)) may contribute to neuropathy. Some chemotherapies used in the treatment of cancer can cause neuropathy. Other drugs that are common sources of nerve damage are metronidazole (Flagyl), thalidomide, isoniazid, vincristine, and dapsone. In addition, alcohol, cocaine, and amphetamines can all cause nerve damage.

  Diabetes. Over time, elevated blood sugar can cause neuropathy. With the increasing incidence of blood sugar problems and diabetes in HIV+ people, this may become a possible source of neuropathy for more and more people. 

 What are the possible treatments?The first must for effective treatment of neuropathy is identification of the probable causes followed by elimination of as many of these as possible. This would include identifying problematic drugs, assessing whether an elevated viral load may be contributing, and considering the possibility of nutrient deficiencies that may cause or contribute to neuropathy.  

Key Therapies for Peripheral Neuropathy 

Antiretroviral medications. Physicians who specialize in the treatment of neuropathic pain know that controlling HIV helps prevent problems. By suppressing the virus and improving immune function, you both stop HIV from causing nerve damage and, by improving immune function, decrease the chances of secondary infections that could attack the nerves. So beginning HAART medications in those who have not yet done so may be important to prevent or stop the worsening of neuropathy. However, there may be a Catch 22 in this. If it appears likely that HIV is a major contributor to neuropathy because the symptoms were already present before beginning drug therapy, it is obviously important to suppress the virus. Yet, as you no doubt know, a number of the most commonly used HAART meds can cause neuropathy. If these are the drugs you are taking at the time that neuropathy develops and they are working well to suppress the virus, you will have to discuss the pros and cons of any possible changes very carefully with your physician. 

 For those with pre-existing problems (prior to beginning HAART), it may be particularly important to try to choose antiretrovirals that are less likely to cause this problem, and avoid other drugs that may also contribute to nerve damage. On the list of drugs that it may be best to avoid if possible are the antiretrovirals d4T (Zerit®), ddC (Hivid®), and ddI (Videx®).  

Drug switches. When possible, it is extremely important that drugs (antiretrovirals or others) that are causing peripheral neuropathy be stopped immediately after the beginning of symptoms. Any delay in cessation may result in permanent problems. It has usually been the case that when causative meds are stopped shortly after symptoms begin, the pain and numbness will be likely to subside over time, and will eventually be completely eliminated. This process may take a number of months, but in the end, the neuropathy and the symptoms it causes will fade away.  

However, failure to immediately cease the use of problematic drugs may greatly reduce the chances for complete reversal of symptoms. It appears that the longer the nerve damage continues, the less likely it is that the symptoms caused by it will disappear. Too many people have ended up with permanent pain, numbness, and burning because drug discontinuation was delayed. It is very important to report any symptoms that might indicate neuropathy to your physician immediately. It is equally important for physicians to seriously consider drug switches, where possible, in order to stop the nerve damage quickly. HIV-knowledgeable physicians are usually very aware of this, and won’t hesitate to consider changing meds. For those stuck with less knowledgeable docs, this may not be the case so educating the physician on these facts may be crucial.  

When considering drug switches, there is one important caveat. Although it would seem appropriate to look for possible substitutions for any drug that appears likely to be contributing to neuropathy, there may not always be available substitutes. This may be a particular problem for people who are very treatment experienced with HAART meds. They may have become resistant to many previously used drugs, and might well be on the only combo currently available to them. In addition, since nucleoside analogues are the most common cause of neuropathy, an obvious substitution is to put together a nuke-sparing combo. However, some people may be intolerant of protease inhibitors or NNRTIs because of the symptoms that they cause. [In such cases, it would be worth trying all the therapies discussed in this guide to counter whatever symptoms are problematic when those drugs are used. You might find that you will be able to use those drugs by accompanying them with appropriate symptom-countering therapies, and thus avoid the use of nucleoside analogue drugs that are contributing to neuropathy.]  

In some cases, if the current HAART combo is otherwise working well and providing the anti-HIV benefits needed, and your drug history or med intolerance makes finding substitutes difficult or impossible, it may be necessary to stay with those meds, while attempting to address the neuropathy with the nutrient therapies discussed here that provide mitochondrial support (since damage to the mitochondria is believed to be a cause of neuropathy) and protection against oxidative stress (another cause of nerve damage) and the building blocks to repair nerves. Natural anti-inflammatories might also be useful.  

When nukes must be continued to maintain viral control, it would be advisable to try to use the drugs that may be the least likely to cause mitochondrial dysfunction and the neuropathy that could result from that. In general, it is thought that d4T (Zerit®), ddC (Hivid®), ddI (Videx®), and AZT (alone in Retrovir® and also in the combination drugs Combivir® and Trizivir®) have the greatest potential for mitochondrial toxicity, while 3TC (Epivir®)), abacavir (Ziagen®), and tenofovir (Viread®) are less likely to cause the problem. It is important to note that most of the evidence in support of this ranking has been derived from in vitro (test tube) research so whether this will actually be the case in HIV+ people is not perfectly known. However, you will notice from this list that the drugs well known to most often cause neuropathy (the “d” drugs) are at the top of the list of those known to cause mitochondrial dysfunction. 

 Nutrient therapies. For all the reasons discussed above, doing everything possible to help counter oxidative stress, prevent mitochondrial damage, and provide the building blocks that the body can use to repair nerves may greatly help to prevent (or prevent worsening of) or even reverse neuropathy. The best results will usually come with a combination of the nutrients discussed here. For example, Phoenix naturopathic physician Kären Van der Veer has found that an integrated treatment approach that includes acupuncture combined with an aggressive nutrient supplementation program is often extremely effective. She recommends giving B-12 injections every day for two weeks, accompanied by folic acid, and then every other day for the next two weeks, and then twice weekly from then on. She also recommends use of B-6, and has found that B-6 will work much faster if injected intramuscularly once every week or two, although oral supplementation will work. She notes that the B-6 injections are painful, but seem to work wonders for neuropathic pain. Along with the B-6, B-12, and folic acid, she recommends oral supplementation with B complex, alpha-lipoic acid, acetyl-carnitine, lecithin, and a broad spectrum of antioxidants. In her patients, this integrated approach is highly successful in reversing neuropathy, and eliminating pain.  

Based on the research done to date, the most important nutrients for countering mitochondrial toxicity would be a broad spectrum of antioxidants (which will also counter oxidative stress), the B complex, and the amino acid, acetyl-L-carnitine.Acetylcarnitine was shown to be effective in a study by Youle et al., at 3,000 mg per day. 

The most important antioxidants would include vitamin E (800 to 1,200 IU daily), vitamin C (1,000 to 2,000 mg, three times daily with meals), bioflavonoid complex (1 capsule with each meal), carotenoid complex (1 capsule with each meal), selenium (400 to 600 mcg daily, total from all sources, including your multiple), N-acetyl-cysteine (500 mg, three times daily), coenzyme Q-10 (100 to 500 mg daily), and alpha-lipoic acid (200 to 400 mg, three times daily). The latter nutrient may be particularly important. Please see NYBC’s Core Nutraceutical Protocols in this Guides’ Introduction. 

Acetyl-L-Carnitine is also crucially important for reversing neuropathy. In non-HIV research, it has been shown that treatment with acetyl-carnitine can help raise nerve myoinositol content, a nutrient needed for peripheral nerve function, while also protecting nerve membranes from oxidative stress-caused damage. In HIV+ people with peripheral neuropathy due to d4T, ddI or ddC, researchers have reported that blood serum (without cells) levels of acetyl-carnitine are abnormally low. After an initial small trial had shown improvement in symptoms in HIV+ people with neuropathy given carnitine, a second small trial was carried out at London’s Royal Free Center for HIV Medicine in order to assess changes in nerve tissue as well as in symptoms. HIV+ people suffering from neuropathy related to “d” drugs (d4T, ddI, ddC) were given acetyl-carnitine in doses of 1,500 mg twice daily for six months. Michael Youle, MD, reports that the result was improvement in symptoms, including pain reduction, and improved nerve biopsy results, even though the “d” drugs were continued. Symptom improvement usually required several months of acetyl-carnitine therapy. Dr. Youle described one person who required narcotic pain medication before supplementation with acetyl-carnitine and no longer required it several months after beginning the nutrient. The only side effect noted in some people was mild diarrhea. In a recent presentation of this information, Dr. Youle concluded by saying "L-acetyl carnitine is an effective pathogenesis-based therapy for HIV-associated peripheral neuropathy." Studies on the use of acetyl-carnitine for the treatment of neuropathy are currently ongoing in the U.S., Great Britain, Italy, and France.  

Carnitine is available in two forms: L-carnitine and L-acetyl-carnitine. There are both over-the-counter and prescription forms of L-carnitine. The brand name of the prescription form is Carnitor. L-carnitine should be taken in doses of 1,000 to 2000 mg, three times per day. L-acetyl-carnitine (available over the counter) should be taken in doses of 1,000 mg, three times daily (about 3,000 mg per day at least. Note that L-acetyl-carnitine will release four times the amount of free carnitine into the bloodstream, compared to an equivalent dose of plain L-carnitine. Thus, the need for higher doses of L-carnitine to achieve the same effect. If insurance or Medicaid coverage for Carnitor is available, this could provide substantial savings. If it is not, then the over-the-counter L-acetyl-carnitine may be best since it requires lower doses for the same effect. [For more information on these, see NYBC’s Basic Nutrient Protocols and Counteracting Inflammation in this guide’s Introduction. Note that high doses of carnitine can sometimes cause watery diarrhea so watch for this.] 

 Alpha-lipoic acid is a fatty acid that has long been used in Europe for the treatment of peripheral neuropathy in diabetics. A number of controlled clinical trials have shown its usefulness for reducing both the pain and numbness suffered by those with diabetic neuropathy, and its use for this condition is approved in Germany. In addition to its protective effects against mitochondrial toxicity, alpha-lipoic acid’s antioxidant properties may help protect the nerves from the inflammation and oxidative damage that HIV induces, as has been shown to be true with diabetic neuropathy.  

The B complex vitamins are also important for mitochondrial support. For any program aimed at reversing any condition associated with mitochondrial dysfunction, it will be important to supplement with a B complex formula (1 capsule with each meal, preferably with a formula that contains at least 50 mg of the B vitamins) or a potent multivitamin/mineral formula that includes the whole B complex (as directed, with meals). Although there are two B vitamins that have been mentioned as being important for countering mitochondrial damage—thiamine (vitamin B-1) and riboflavin (vitamin B-2)—it should never be forgotten that the B vitamins work together, that deficiencies of several B vitamins and many other nutrients are common in HIV disease, that nutrients work as a package in the body, and that one missing link could sabotage the effectiveness of other nutrients. For this reason, a B complex formula or a multiple containing the whole B complex should always be given in conjunction with any separate supplementation with individual B vitamins. In addition to their role in mitochondrial support, certain B vitamins and associated factors may contribute to neuropathy resolution by providing the building blocks for nerves or improving nerve conduction. Among these are biotin, choline, inositol, and thiamine, all of which have been found useful in treating the peripheral and autonomic neuropathies found in diabetes and may also help with HIV-related neuropathies. 

 Biotin was studied at the University of Athens, where it was shown that regular, long-term use of the nutrient in diabetics was very effective both for improvement in nerve conduction and relief of pain. Improvement in nerve conduction occurred after only 4 to 8 weeks of therapy. In this study, biotin was given via daily intramuscular injection (10 mg/day) for 6 weeks; then 3 times per week (10 mg), intramuscularly, for 6 weeks; then 5 mg per day taken orally for up to two years. The researchers hypothesize that deficiency, inactivity, or unavailability of biotin may result in disordered activity of the biotin-dependent enzyme pyruvate carboxylase, leading to an accumulation of pyruvate and/or a depletion of aspartate, either of which could adversely affect nervous system metabolism. There are a number of reasons why HIV+ people may be deficient in biotin and, thus, potentially at risk for this. It has been suggested that those with neuropathy symptoms might try 10 to 20 mg per day orally (10,000 to 20,000 mcg; most biotin supplements will show the dosage in micrograms or mcg), taken in conjunction with the other B vitamins found useful for improving nerve function. B-12 deficiency, extremely common in HIV+ people, is a known cause of neuropathy so this vitamin, along with its coworker folic acid, should certainly be included in any program aimed at eliminating this symptom. Typical symptoms of peripheral neuropathy related to B-12 deficiency include the type of leg and foot pains experienced by many. It is important to remember that standard blood tests do not always accurately reflect B-12 deficiencies. Researchers point out that  

B-12 deficiency is present in a significant percentage of HIV+ people, but does not always cause the red blood cell changes that physicians look for as a sign of deficiency. In addition, because the standard blood test reflects only what’s in the bloodstream and not what is in the body’s cells, a reading that appears normal may not truly reflect the body’s status. Neurologists who have studied this often recommend simply supplementing with B-12 when any of the symptoms that could indicate a deficiency are present. This would include neuropathy.  

B-12 and folic acid should always be given together since taking folic acid alone could prevent the blood cell changes that might otherwise indicate B-12 deficiency. Doses of B-12 (1,000 mcg given daily via pills, or one to several times weekly with prescription nasal gel or injections) and folic acid (800 mcg daily via pills) may be useful in treating neuropathy (as well as restoring energy and overall feelings of well being), even when tests don’t indicate obvious deficiencies. The injections or nasal gel forms of B-12 bypass absorption problems that may be present in many HIV+ people due to problems with the parietal cells that produce the intrinsic factor that is needed for absorption of B-12 consumed orally.

 Vitamin B-6 deficiencies, also common in HIV+ people, are known to cause both carpal tunnel syndrome (with symptoms of numbness, tingling, and pain in the hands and wrists) and degeneration of peripheral nerves, and may be responsible for some peripheral neuropathy problems. B-6 is vital for the formation of the sphyngolipids which are involved in the development of the myelin sheath surrounding nerve cells. Supplementation with B-6 (50 mg, three times daily; this amount will be found in many B complex formulas and potent multivitamins) may help ensure adequate levels to support this process, and help prevent neuropathy. [Note that a long ago study showed that extremely high overdosing with B-6 (doses of 2,000 to 6,000 mg daily, continued for months) could actually cause neuropathy; although this neuropathy mostly vanished after discontinuation of these absurd doses, this has led to a myth that any B-6 supplementation could be harmful; that is simply not true; just avoid ridiculous overdoses.] 

 Choline and inositol also seem to be very important parts of the combination of vitamins needed for neuropathy resolution. As discussed above, diabetic neuropathy is known to be associated with a reduction in myoinositol levels in nerves and tissues. The decreased level of myoinositol is believed to cause a decrease in the activity of the sodium-potassium pump and, thus, to change the sodium permeability of nerves. Both diets high in inositol and inositol supplementation have been shown to improve diabetic neuropathy. Researchers at the University of Alabama found a statistically significant improvement in nerve function in diabetics placed on a diet high in inositol. Included in the diet were high-inositol foods such as cantaloupe, peanuts, grapefruit (or grapefruit juice), and whole grains. Other researchers have reported that supplementation with inositol in doses of 2,000 mg to 6,000 mg daily has resulted in improvements in neuropathy. A combination of choline (400 to 800 mg of choline citrate or 1,000 to 3000 mg of phosphatidylcholine, 3 times per day) and inositol (500 to 2000 mg of myoinositol, three times per day) may be useful for treating neuropathy.  

Thiamine has also been seen to be useful in treating diabetic neuropathy. Stanley Mirski, M.D., has reported that a large percentage of his diabetic patients who suffer from neuropathy have achieved improvements with daily thiamine supplementation in doses of 50 to 100 mg. Using a fat-soluble form of thiamine such as thiamine tetrahydro-furfuryl disulfide may be preferable because of the poor absorption of water-soluble forms of this vitamin. This type is contained in Cardiovascular Research's Allithiamine. Doses of two capsules daily might be useful. 

 Lecithin and fatty acids. Lecithin (phosphatidylcholine) is a phospholipid, a type of fat important in the structure of all membranes. They are beneficial to myelin sheath production and, thus, nerve protection . Cell membranes are largely composed of phosphatidylcholine, as are the protective sheaths surrounding the brain. Food-grade lecithin is a substance commonly used as a food additive and nutritional supplement that contains phosphatidylcholine, as well as other phospholipids, including phosphatidylinositol and phosphatidylethanolamine. [To avoid confusion, note that to a chemist lecithin is phosphatidylcholine; we are using the term here to refer to the food-grade lecithin granules available in health food stores as a supplement. It consists mostly of the B-vitamins choline and inositol along with linoleic acid and other fatty acids, glycerin, and phosphorus.  

Although lecithin is a lipid, it is partly water-soluble and thus acts as an emulsifying agent. Most lecithin is derived from soybeans, but egg lecithin (from egg yolks) is also available; some studies show that this form is more beneficial for HIV+ people. Other sources of lecithin include brewer’s yeast, grains, legumes, fish, and wheat germ.  

For anyone concerned about preventing or treating neuropathy, some naturopathic physicians recommend 1 tablespoon of lecithin granules twice daily. It can be blended into protein or fruit shakes (which it will make them creamier), or sprinkled on cereal or oatmeal or on salads. For those with serious neuropathy, try using 1 tablespoon, four times daily, along with a plentiful intake of omega-3 and omega-6 fatty acids. Gamma linolenic acid is an omega-6 essential fatty acid that may help the body repair nerves. 

Gamma linolenic acid, found in borage oil, grape seed oil, black currant oil, and evening primrose oil, has been shown to be successful in reversing nerve damage in diabetics suffering from peripheral neuropathy. In a double-blind, placebo-controlled study using 480 mg of GLA daily, all the diabetics given the fatty acid experienced gradual reversal of nerve damage and improvement in the symptoms related to the peripheral neuropathy, while those on placebo gradually worsened. It is thought that GLA may help to rebuild the myelin sheath around the nerves. The least expensive source of GLA is usually borage oil. GLA doses of 240 mg, twice daily, with meals, might be appropriate. 

 For information on good sources of omega-3 fatty acids, see the Natural Anti-inflammatories discussion in the Counteracting Inflammation section of the Introduction.

 Magnesium and chromium are two minerals that may also be important for treating neuropathy. Magnesium, shown by Canadian researchers to be deficient in a significant percentage of HIV+ people, is also known to be necessary for nerve conduction. Deficiency of this mineral can cause peripheral neuropathy symptoms. Thus, including optimal amounts of magnesium might contribute to elimination of neuropathy. Doses of 500 to 600 mg daily, taken with a meal, might be useful. [Note that excessive magnesium can cause watery diarrhea so watch for this.] There have also been reports of chromium deficiency causing peripheral neuropathy. Since chronic infection is known to deplete body stores of chromium, supplementing with chromium (200 mcg, three times daily) in the context of a complete nutrient protocol might be reasonable. 

 Cod liver oil, a source of vitamins A and D, has been reported to result in neuropathy improvement in some, especially when symptoms are mild. One to two tablespoons daily have been suggested. There are flavored cod liver oils available today that many prefer to older versions of this oil.  

NYBC and Other Nutraceuticals for Neuropathy:
 Acetylcarnitine 500mg x 100 6/d (2B, 2L, 2D) 
 B-50 Complex x 250 3/d (1B, 1L, 1D) 
 Biotin 5000mcg x 60 2-4/d (0-1B, 1L, 2B) 
 Borage Oil 240mg GLA x 120 2/d (1L, 1D) 
 Choline & Inositol 250/250mg 6-10+/d (2-3B, 2-4L, 2-3D)  
Chromium GTF 200mcg x 250 3/d (1B, 1L, 1D) 
 Flaxseed Oil 1,000mg x 200 6+/d (2B, 2L, 2D)  
Folic Acid 800mcg x 250 3/d (1B, 1D, 1D)  
Lecithin 35% 1200mg x 200 3/d (1B, 1L, 1D)
 Lipoic Acid 100mg x 180 9-12/d (3-4B, 3-4L, 3-4D)  
Magnesium glycinate 220mg x 120 2-3/d (0-1B, 1L, 1D)  
Methylcobalamin (B-12) 5000mcg x 100 3/d (1B, 1L, 1D) P-5-P (B-6) 50mg x 60 3/d (1B, 1B, 1D) 

  Natural anti-inflammatories. Since HIV-caused inflammation, and increased production of unstable free-radicals, play a role in causing or contributing to most of the symptoms described in this guide, the idea of counteracting that inflammation is appealing. Rather than using anti-inflammatory drugs, which are potentially toxic and may interfere with the natural benefits of the inflammatory response (since the inflammation is part of the immune system=s way of countering infections), it is probably preferable to use foods that have natural anti-inflammatory qualities. 

 Because such foods have been used for thousands of years with no apparent adverse effects on immune responses, it seems likely that long-term consumption of them would be considerably safer than long-term use of drugs. Their anti-inflammatory effects are more subtle but might still provide substantial benefit. Naturally anti-inflammatory substances are found in the following foods and seasonings:
 garlic, ginger, turmeric
bioflavonoid- and antioxidant-rich fruits and vegetables  

omega-3 fatty acid-rich foods such as fatty fish (e.g. salmon, mackerel, sardines, tuna, cod and halibut), flaxseed, and walnuts.  

chlorophyll-containing foods such as wheat grass juice and blue-green algae.  

There are also specific nutritional supplements and herbs that counteract excess inflammation and may help to lower levels of tumor necrosis factor. These include N-acetyl-cysteine (NAC), carnitine, nettle leaf extract, grape seed extract and bilberry extract, as well as a broad spectrum of all the other important antioxidants (vitamin E, vitamin C, bioflavonoid complex, carotenoid complex, selenium, coenzyme Q-10, and alpha-lipoic acid). For more detailed information on the above foods and supplements, please see NYBC’s Core Nutrient Protocols and Counteracting Inflammation and Tumor Necrosis Factor in the Introduction, as well as the description of Health-Enhancing Nutrients inNYBC’s Self-Care Guide.  

Pain medications. 
 Please see Muscle Aches and Pains in this Guide, For those whose neuropathy is causing pain, adequate treatment of that pain will be very important. Unfortunately, although opiates are generally considered to be the most powerful pain medications, neuropathic pain is the kind of pain for which they are the least effective. In the past few years, however, an alternative has come along. The anti-seizure drug gabapentine (Neurontin) has been found to act as a nerve stabilizer that can quiet the misfiring nerves responsible for neuropathic pain. It is now generally recommended that Neurontin be the first pain medication that is tried for neuropathic pain. Doses usually start at 100 mg daily but can be increased to as much as 3000 mg to 3,600 mg daily, taken in from 1 to 3 doses. Neurontin has sedating effects that some find difficult. 

 For pain that mostly occurs at night, the standard recommendation is for oral amitriptyline (Elavil, a tricyclic antidepressant), beginning with low doses in order to minimize certain side effects (dry mouth, sedation, urinary retention, and low blood pressure upon suddenly sitting up or getting out of bed, termed orthostatic hypotension. A starting dose of 25 mg at bedtime is gradually increased to 75 mg (or as high as 100–150 mg if needed). Elavil may be particularly useful when sleep problems accompany the neuropathy because it has sedative effects. 

 For predominantly daytime pain, oral nortriptyline (Pamelor) is often advised since it is less sedating, also beginning with a low dose of 10 mg per day, and gradually increasing to 30 mg, 3 times daily. With these drugs, effective reduction of pain may not occur for up to two or three weeks, so patience is required. When one of these is not effective, another may still be.  

For occasional pain, standard anti-inflammatories such as ibuprofen (Motrin, Advil) may help with mild neuropathic symptoms. The use of topical analgesic or anesthetic creams can also sometimes be effective. In addition, topical aspirin has been reported to work to relieve pain in some people. An aspirin tablet is crushed and dissolved in a small amount of water or gel or cream, and then applied topically to a painful area. 

 Two other therapies have recently shown promising results for treatment of neuropathic pain. A pilot study showed that lamotrigine (Lamictal), an anticonvulsant, worked significantly better than placebo to decrease neuropathic pain in HIV+ people. However, severe rash, a known side-effect of lamotrigine treatment, occurred more frequently than in studies of lamotrigine treatment for epilepsy so the possibility of this should be carefully monitored. This drug is approved for the treatment of seizures and, thus, is available for off-label use. Another recent study looked at the effects of NGF, a neurotrophic growth factor that stimulates regeneration of damaged nerve fibers, on HIV-associated peripheral neuropathy. Results showed that twice-weekly injections of NGF reduced neuropathic pain. The drug was well tolerated, although some patients complained of injection-site pain. (This drug is not yet approved, and its development has been halted, at least for now.)  

If the above meds are insufficient for treating the pain, it is generally recommended that the World Health Organization (WHO) four-step approach to drug treatment of pain be used. In general, it is thought best for medications on each step of the WHO ladder to be given in the maximum tolerated doses before moving up to the next step. Where there is chronic pain, it is thought best to treat around the clock in order to prevent pain. If necessary, the usual meds can be augmented by short-acting drugs in order to treat breakthrough pain. With all these drugs, individual responses may vary and will be the best guide for proper med use.  

The choice of specific pain meds should take into consideration a number of factors. First, discuss with your physician any possible interactions with other drugs you are taking before beginning any pain med. Second, consider any other medical conditions you have and the effect that certain pain meds, most of which have side effects that could be serious, may have on them.  

Topical medication: A transdermal gel of acetyl-carnitine, pyroxidol-5-phosphate, and geranium oil is showing positive signs of effectiveness. The gel is rubbed into the hands and/or feet and is absorbed locally as well as sytemically. The gel is available from Life Science Pharmacy at 845-781-7613.

Step One: 
 try acetaminophen or a non-steroidal anti-inflammatory drug (NSAID) such as aspirin, naproxen, sulindac, or ibuprofen. These are most effective for mild pain. Possibilities include: ibuprofen (200-600 mg, 3-4 times per day); aspirin (500-1,000 mg, every 4-6 hours); or naproxen (500 mg initial dose, followed by 250-375 mg, every 6-8 hours).When one NSAID doesn’t work, another might. Long-term use can cause gastrointestinal bleeding and should be avoided, if possible. Those with low platelets, kidney dysfunction, or low serum albumin levels (common in those with wasting) should not take NSAIDs. Those with gastric Kaposi's sarcoma should either take them with an antacid or avoid them.  

Note that for those with liver problems, acetaminophen (Tylenol) would be inadvisable. For those with ulcers, gastrointestinal bleeding problems, intestinal Kaposi’s sarcoma, low platelets, kidney dysfunction or low serum albumin levels (common in those with wasting), aspirin and other NSAIDs would be inadvisable. 

 In general, unless any such issues make it problematic, aspirin or buffered aspirin is probably the best choice for this first step in pain treatment. Tylenol (acetaminophen) significantly lowers the body’s level of the antioxidant glutathione. Since glutathione levels are already too low in HIV+ people, worsening this is not a good idea. In addition, the lowered levels of glutathione already present in those living with HIV may significantly increase the chance for acetominophen toxicity. Even in doses considered to be in the routine therapeutic range, it is known that acetaminophen can cause liver injury in people with a tendency for glutathione deficiency. Aspirin also lowers glutathione, but to a much lesser extent than acetaminophen. 

 If you are taking either aspirin or acetaminophen long-term, the use of the nutrients that help normalize glutathione levels is very important. Included are alpha-lipoic acid, N-acetyl-cysteine (NAC), glutamine, and vitamins E and C. Appropriate doses would be NAC (500 mg, three times daily; always take with food to prevent gastrointestinal irritation); glutamine (5,000 to 10,000 mg daily, spread across four doses; a powdered form is best; mix in water or juice and take on an empty stomach); vitamin E (800 to 1,200 IU daily); vitamin C (because individual needs vary widely, recommended dosages range from 1,000 to 6,000 mg or more daily, with doses spread across the day and taken with meals; note that amounts in excess of individual tolerance can result in gas and diarrhea; if you develop sudden watery diarrhea when you begin or increase a vitamin C dose, know that this may be the cause.); selenium (200 to 400 mcg daily); SAMe (S-adenosyl-L-methionine; 800 to 1,600 mg daily); and alpha-lipoic acid (200 to 400 mg, taken three times daily, preferably on an empty stomach; note that a time-released form is very important because alpha-lipoic acid has a very short half-life in the bloodstream; by using products that release the alpha-lipoic acid gradually over time, you increase the total time that the nutrient will be available and working in the body.) For much more information on these nutrients and their usefulness in restoring glutathione in HIV+ people, see Mitochondrial Support and Protection Against Oxidative Stress.  

Always remember that long-term use of aspirin or other NSAIDs can cause damage to the intestines and gastrointestinal bleeding. In general, it is always best to only use such meds when you absolutely need them to reduce pain, and avoid long-term use, if possible. 

 Step Two:
  if NSAIDs are not enough, try using a weak opiate derivative either alone or along with a Step One agent. Possibilities include codeine alone (30-60 mg); codeine (30 mg) with acetaminophen (325 mg); hydrocodone (5 mg) with acetaminophen (325 mg); or oxycodone (5 mg) with acetaminophen (325 mg). Any of these combos would be repeated every 4 to 6 hours. 

Step Three:
  if the above are inadequate, switch to a stronger opiate such as hydromorphone, transdermal fentanyl patches, levorphanol, morphine sulfate (intravenous), sustained-release morphine sulfate (oral), or meperidine. The minimum daily dose that affords pain relief should be used.  

Step Four:
  at any point during the preceding steps, add adjuvant therapies to boost the effectiveness of the other drugs. At the top of this list, due to good effectiveness with few side effects, is gabapentine (Neurontin), starting at 100 mg daily and going as high as 3000 mg daily, taken in 1 to 3 doses. As is discussed above, Neurontin may also sometimes be effective when used as a sole agent. Other boosters include antihistamines like hydroxyzine (Vistaril); butyrophenones like haloperidol (Haldol) and pimozide (Orap); psychostimulants like methylphenidate (Ritalin), dextroamphetamine (Dexedrine), and pemoline (Cylert); amine precursors like tryptophan; selective serotonin re-uptake inhibitors such as fluoxetine (Prozac), paroxetine (Paxil), and sertraline (Zoloft); and heterocyclic and non-cyclic antidepressants like trazadone (Desyrel) and maprotiline (Ludiomil). [For additional information on the treatment of pain in HIV disease, see Pain.]  

Reducing symptoms by countering overexertion, reducing pressure, and soothing affected areas. Several physical practices may help relieve pressure on hypersensitive feet or hands and, thus, reduce pain. This includes limiting walking distances, avoiding standing for lengthy periods, wearing loose-fitting shoes and socks, avoiding repetitive pressure on the hands, and soaking the feet or hands in ice water on a regular basis. 

 Regular exercise also seems to help in some cases, possibly by increasing circulation to the nerves. Support stockings also seem to help some people, although in others they may actually cause pressure that worsens pain.  

Some people experience increased pain in certain areas when sleeping. For example, neuropathy in the heels that only causes a slight feeling of numbness during the day may cause serious pain when the mattress presses into the heels during sleep. A simple measure that can help is to raise such an affected area (the heels or the hands, etc.) off the mattress by using a small pillow. Place a small tubular pillow (sold by many chiropractors; a piece of foam rubber with a pillowcase wrapped around it would also work) under the legs (or the arms) just above the heels (or the wrists) so that the affected areas are slightly elevated. This can remove the pressure that's causing the pain and allow for uninterrupted sleep. Keeping heavy covers off of painful areas can also help. If the heels or toes are the problem areas, arrange the covers so that only a sheet or light covering is over the feet. Pull any heavier covers farther up so that they stop just above the feet.An egg crate-type foam mattress will relieve pressure spots from head to heel and may make sleeping much more restful.  

Acupuncture or acupressure. Acupuncture has been reported to be very effective for the relief of neuropathic pain, with improvement often occurring with the first treatment. Repeated treatments may, however, be necessary for long-term relief. Note that one study of acupuncture found no benefits from its use; however, acupuncturists believe that the study was invalid because according to the standards of Traditional Chinese Medicine, acupuncture should always be individualized for each person; in the study, the identical points were used for everyone. There are many anecdotal reports from the community that support the belief that acupuncture is often helpful with neuropathy. Where acupuncture is not available, acupressure—in which energy points are pressed or massaged—may be another possibility for treating neuropathy. 

 Sympathetic electrical current therapy. Recent research has shown that the application of an electrical current designed to affect the nervous system systemically may significantly reduce pain and improve sleep in people diagnosed with chronic peripheral neuropathy. In a study recently published in the American Journal of Pain Management, Texas neurologist Ernesto H. Guido, M.D., reported effective treatment of neuropathy sufferers (not limited to HIV+ people but anyone with chronic neuropathy) with the Dynatron STS, a device approved by the FDA. This device delivers low frequency, high intensity electrical current in a way that is designed to gain access to the autonomic nervous system via peripheral nerves. The treatment was administered daily for 28 days to 20 people with a primary diagnosis of peripheral neuropathy. Pain duration for these people ranged from one to 25 years. Most people reported decreases in pain after only a few days. Of being treated. By the end of the study period, significant pain relief was reported by 19 of the 20 people, and half of the sufferers reported complete relief. The one individual who did not report pain relief, did experience improved sleep and a 30 percent reduction in the use of pain medication. The researchers note that the pain reduction outcomes of this study may indicate that this therapy could be an effective means of providing symptomatic relief of chronic intractable pain, even in those who have suffered symptomatically for many years, or have been unresponsive to other therapies. More information is available at the manufacturer’s website (Dynatronics Corporation, Salt Lake City, Utah;

 Key Therapies for Autonomic Neuropathy 

Antiretroviral medications, nutrient therapies, and natural anti-inflammatories. For preventing or countering damage to autonomic nerves, it will be important to consider many of the same remedies discussed above for peripheral neuropathy. Consideration should be given to the use of antiretroviral medications to counter HIV-caused nerve damage, nutrients that may help protect or rebuild nerves, and natural anti-inflammatories to counter the inflammation that may contribute to autonomic nerve problems. For information on these, see the sections above entitled Antiretroviral medications, Nutrient therapies, and Natural anti-inflammatories.  

Although we know much less about the use of any of these for the protection of autonomic nerves, there are anecdotal reports that these therapies may work to improve autonomic neuropathy. Suppressing HIV with antiretrovirals may be very important for protecting the autonomic nerves.  

The most important nutrient therapy for autonomic neuropathy may be acetyl-carnitine (1,000 mg, three times daily on an empty stomach) combined with alpha-lipoic acid (400 mg, three times daily; absolutely do use an extended release form such as MRI’s Extended Release Alpha-Lipoic Acid). There have been anecdotal reports that using these in combination has resulted in improved stomach functioning, and a reduction in the symptoms that damage to stomach nerves can cause (bloating, sometimes to the extent of distention, after meals, discomfort, and gas). Adding to these nutrients the others discussed above would always be best.  

Countering stomach dysfunction. With nausea caused by autonomic neuropathy, there may be a long-term need for use of metoclopramide (Reglan). Reglan speeds the emptying of the stomach and small intestine, thus relieving the digestive symptoms of bloating and uncomfortable fullness in the stomach. By ensuring that food moves on through the digestive tract as it is supposed to do, the use of Reglan will often not only improve digestion significantly but also eliminate the nausea and abdominal cramping that the food sitting undigested for long periods of time can cause. Reglan is available in oral form as a tablet or syrup, and in injectable form for intramuscular or intravenous use. The dosage range is from 5 to 20 mg, with the most common dosage for digestive problems being 10 mg, given approximately 30 minutes before meals and sometimes also at bedtime. Reglan has a sedating effect in some people so watch for this (and avoid driving if it occurs). 

 One note on this is important. With constant daily use of Reglan, its effectiveness may diminish. Thus, it will always be best to only use the drug when truly necessary. Many people will find that if they eat smaller meals, and always avoid over-filling the stomach, they may not need to take Reglan all of the time. Then on occasions when a bigger meal will be eaten (it’s Thanksgiving or you’re at your favorite restaurant and want to indulge), the Reglan can be used effectively. By using it only when definitely needed, people report that its usefulness is maintained. However, chronic daily use with every meal has resulted in losing the drug’s effectiveness, a serious problem for those times when the stomach really locks up and the food just keeps sitting there.

 Countering orthostatic hypotension. For those with orthostatic hypotension (low blood pressure) that is caused by autonomic neuropathy, the use of elastic antiphlebitic (compression) stockings can help. These are thigh-high stockings that apply pressure to the legs in a way that helps to prevent pooling of the blood in the lower legs, thus helping to ensure normal blood flow to the head. 

 Countering urinary incontinence. If urinary incontinence is present, it is very important to see a urologist who can determine the cause(s) since autonomic neuropathy is only one of several potentially serious causes of this problem. There are drugs such as Hytrin or Ditropan which can help with some types of urinary incontinence.