Peripheral neuropathy (PN) is a debilitating treatment side effect and one of the common reasons for people stopping their anti-HIV medication. People’s experience of this form of neuropathy varies from a mild ‘pins and needles’ sensation or numbness in the hands and feet to very severe pain – “it’s like I’m trying to walk with broken glass in my feet”.
The pain can sometimes be great enough to put people in a wheelchair, or at least make it difficult to drive a car or walk any distance.
The ‘D Drugs’ (ddI, d4T and ddC) are widely considered the major cause of this disabling condition, although HIV itself and other drugs (such as AZT, intravenous pentamidine, dapsone and isoniazid or vincristine, a chemotherapy drug) can also be responsible. As use of the ‘D drugs’ has decreased, so peripheral neuropathy has also declined but for many people it is still a big problem.
Natural therapy treatments aim to firstly reduce pain and other symptoms and, secondly, to reverse the condition and heal damaged nerves.
There are a range of creams and gels that can be directly applied and will bring some improvement for most people. Geranium oil will usually have a quick effect – just rub a small amount into the affected area. ‘Sports Gel’ – available through the Victorian Positive Living Centre but hard to find elsewhere – has a positive effect that can last for 6-7 hours in people who benefit from it – enough break from continuos pain to get an uninterrupted night’s sleep.
There are several other modalities such as acupuncture, Bowen therapy and reflexology that have proved their worth as well – although acupuncture is the most researched.
A recent acupuncture trial with positive results had 21 people with HIV receive acupuncture twice a week for five weeks. The acupuncture was individually prescribed for each person’s particular symptoms. That is, the acupuncture treatment was different for everyone and also changed for each individual person at each treatment.
After ten acupuncture treatments, self-ratings of ‘present pain’ and ‘most pain in the last 24 hours’ had markedly dropped (p=0.0002 and p=0.0004 respectively). Other symptoms, such as aching, burning, pins and needles, and numbness in the hands and feet were also significantly reduced (p<0.0065)[1].
An earlier trial, comparing the medical drug amitriptyline with acupuncture and with ‘placebo’ acupuncture over 14 weeks, showed no significant benefit from any of these2. However, the acupuncture used in this trial did not take into account people’s individual symptoms and so used the same set points for each person throughout the entire trial. This approach to acupuncture will nearly always have a less positive effect than individually prescribed treatments.
But do any of these treatments actually reverse or cure the problem? One treatment that researchers have found that can do just this is the amino acid carnitine.
Interest in carnitine as a possible treatment for PN was sparked with the observation that people with HIV who were taking any of the ‘D drugs’ were much more likely to develop neuropathy if they were also deficient in acetyl-carnitine3.
Acetyl-carnitine can be thought of as a particularly active form of carnitine in the body – it is made from carnitine and is, among many other things, important for energy production and the maintenance of nerve tissue.
The most recent study of acetyl-carnitine involved 21 people with established antiretroviral-related PN. Ten (48 percent) were taking non-opioid medication to control pain and three (14 percent) needed the stronger opiates to manage pain. Participants took 1500mg of L-acetyl-carnitine per day and were followed up for about three years4.
After six months’ treatment, twelve (60 percent) of the participants’ pain disappeared altogether – including one person who had previously been using opiates. Another three had significant improvement in pain but five had no change and one person’s pain got worse. There was also signs of regrowth of damaged nerves. In some people, the regrowth in nerve tissues continued to steadily improve for up to two years.
Depending on your budget, other supplements that may be helpful for this side effect are lipoic acid5, magnesium6, vitamin B complex, vitamin E and lecithin.
If all else fails then chilli (sometimes called capsicum) ointment7 will almost invariably work to reduce symptoms.
*Jim Arachne* is the Complementary Therapy Treatment Officer for the Victorian AIDS Council.
References
1 “Effect of Acupuncture Administered in a Group Setting on Pain and Subjective Peripheral Neuropathy in Persons with Human Immunodeficiency Virus Disease”. Phillips KD., et al. The Journal Of Alternative And Complementary Medicine, Volume 10, Number 3, 2004, pp. 449-455
2 “Acupuncture and amitriptyline for pain due to HIV-related peripheral neuropathy”. Shlay JC et al., Journal of the American Medical Association 280:1590-1595. November 11, 1998.
3 “Acetyl-carnitine deficiency in AIDS patients with neurotoxicity on treatment with antiretroviral nucleoside analogues”. Famularo G., et al., AIDS 1997 Feb;11(2):185-90
4 “Acetyl-l-carnitine: a pathogenesis based treatment for HIV-associated antiretroviral toxic neuropathy”. Hart AM., AIDS. 2004 Jul 23;18(11):1549-1560.
5 “Treatment of diabetic polyneuropathy with the antioxidant thioctic acid ( -lipoic acid): A two year multicenter randomized double-blind placebo-controlled trial (Aladin II)”. Reljanovic, M., et al., Free Radical Research. 1999;31, 171-179.
6 “Magnesium level and peripheral neuropathy”. Stroud S, et al., Int Conf AIDS. 1994 Aug 7-12;10:202 (abstract no. PB0235).
7 “Effect of treatment with capsaicin on daily activities of patients with painful diabetic neuropathy”. Diabetes Care 1992 Feb;15(2):159-65
