Other options and alternatives
sq_redsm.gif sq_redsm.gif sq_redsm.gif sq_redsm.gif Why neuropathy with HIV? How is it treated? Home BLOG (help for the community) sq_redsm.gif What is neuropathy? sq_redsm.gif Site in Dutch sq_redsm.gif Links neuropathiehiv010005.jpg
It may seem obvious but always be careful exploring the internet for ideas regarding self-treatment of neuropathy. Just as there are many different types of neuropathic complaints, there are countless hints and tips on relieving the symptoms and not all of them may be appropriate for your specific problem. Above all, as an HIV patient, look out for anything which may clash with your HIV drug regime. There are several reliable sites on which you can check potential drug interaction problems with supplements (see Links) and it's always wise to do so. Busy doctors can’t always be expected to be aware of all possible medication interactions, especially if you are taking a number of drugs.

Any treatment depends on the extent and type of your neuropathic problems and the following information reflects only what seems to work for other sufferers. You will also see all these options on recognised medical sites but if in doubt, ask your neurologist, internist or pharmacist (preferably more than one - opinions differ within the profession too)

Some simple basic things can reduce the pain of polyneuropathy and improve your general health:

Wear looser shoes but also shoes with soft, padded soles. People with neuropathy are strongly advised to avoid open, or half open sandals, or to walk around bare foot, either inside or outside (chance of unnoticed wounds through dirt, thorns, nails, broken glass, drawing pins etc). Also, the use of hot water bottles is strongly discouraged (burn wounds through reduced sensation and feeling) 
Don’t walk too far
Don’t stand for too long a time
Soak your feet in ice water
Eating a healthy diet
Exercising regularly
If exercise is difficult, swimming is a good alternative (minimum temperature of 28 degrees celsius) thanks to the reduced stress on the joints and muscles
Maintaining a healthy weight
Controlling blood pressure
Not smoking
Limiting alcohol use

Nutritional Options for Neuropathy

During the course of your search for information, you will see many references to diabetic neuropathy mainly due to the fact that much more research has been done in that area. Where the symptoms are the same, it is reasonable to suppose that supplements will have the same effects for HIV –related neuropathy. Indeed, the following supplements are recommended widely in the HIV field but as always, watch out for contra indications with your own regime.
In many neuropathies, no specific cause will be identified, let alone the reason for your pain or discomfort. In addition, many of the causes of neuropathy are themselves not easily treatable. However, a number of supplements have been shown to interfere with the underlying mechanisms of a variety of forms of neuropathy.

Acetyl-L-carnitine is a modified amino acid which is known to have protective properties for nerve cells and amongst other things, may also help to support healthy brain function, mood and memory. Two recent studies have found that acetyl-L-carnitine can limit the neuropathy associated with some chemotherapy drugs. However, in order to achieve significant reductions in pain, daily doses should be at least 500mg to 1000mg and that can be expensive (German insurance companies will cover this but not in the Netherlands). Furthermore, it has to be taken over a long period and like everything else, will not work for everybody.

The research does, however seem to suggest that acetyl-L-carnitine works. In two related studies of diabetic nerve degeneration and neuropathy, acetyl-L-carnitine accelerated nerve regeneration after experimental injury. In a human trial2, acetyl-L-carnitine appeared to help prevent or slow cardiac autonomic neuropathy in people with diabetes. In a large, multicenter human trial, L-carnitine improved nerve conduction velocity and reduced pain associated with diabetic neuropathy over a one-year period.
Because of the high costs associated with both acetyl L-carnitine and alpha lipoic acid, the possibility of buying more cheaply via the internet should be explored (always from reputable suppliers of course).

Alpha Lipoic acid.
Alpha Lipoic acid is a powerful antioxidant which has also been shown to reduce the pain associated with diabetic neuropathy.
It is a natural anti-oxidant which benefits people with diabetes and heart disease by helping to prevent cell damage throughout the body. As a natural antioxidant, it attacks free radicals that cause damage to the cells in the body.
A study published in 'Diabetes Care' has shown that supplementing with Alpha Lipoic acid can partly restore diabetic nerve function after only four months of high-dose oral treatment. However, as mentioned earlier, this may not apply to HIV patients with neuropathy – not enough research seems to have been done yet.

Moreover, Alpha Lipoic acid can help improve blood circulation of small capillaries, balance blood sugar and boost the immune system; reasons enough you might think, to take it.
Alpha lipoic acid is sometimes given to peripheral neuropathy patients in Europe intravenously to relieve the tingling feet and neuropathic pain. Several European and American studies have shown that giving between 200 and 600 mg of alpha lipoic acid for three weeks followed by oral supplements significantly decreased peripheral neuropathy symptoms. An ongoing study is looking at whether alpha lipoic acid can reduce the symptoms of peripheral neuropathy that some people experience after cancer chemotherapy. Unfortunately, most studies have focused on intravenous alpha lipoic acid therapy. It is less clear whether simple oral therapy is effective for people with peripheral neuropathy. To get the same benefits, larger doses and longer treatment times may be needed and that can once more, be an expensive business if you have to pay for your supplements yourself. The more pressure individuals can bring on their own medical professionals, the more chance the insurance companies will see the benefits of these supplements.

Vitamin supplements

The following information is probably the most tempting for neuropathy patients because it seems that vitamin supplements are a ‘good thing’ whatever your problem. However excess vitamin use can actually cause neuropathy instead of helping it, so careful choices backed up by medical consultation is strongly advised. Vitamins from the B group (B6,B11/folic acid) especially, can work neurotoxically and can trigger neuropathy, or make it worse.


Omega-6 fatty acids.

These have been shown to improve diabetic neuropathy if given long enough to work. In one double-blind, placebo-controlled study, 111 people with mild diabetic neuropathy received either 480 mg supplemented Omega 6 daily or placebo. After 12 months, the group taking the supplement was doing significantly better than the placebo group. Good results have been seen in other smaller studies as well.

Omega-3 fatty acids.
The omega-3s are better known and found in high quantities in fish such as salmon and are widely consumed for their anti-inflammatory powers. Omega-3s are essential fatty acids and are important components of cell membranes, including the delicate myelin sheath that protects nerves. Studies have shown that they are able to reduce demyelisation in the nerves of diabetic animals, which reduces neuropathic pain.

Vitamin B1 (thiamin) and benfotiamine.
Some animal studies have shown a decrease in pain with a combination of vitamin B1, vitamin B6, and vitamin B12. The fat-soluble form of vitamin B1, called benfotiamine, has been used effectively to treat alcoholic and diabetic neuropathies.

Vitamin B6.
Diabetes patients with neuropathy have been shown to be deficient in vitamin B6 and to benefit from supplementation. Interestingly, the neuropathy caused by vitamin B6 deficiency is indistinguishable from diabetic neuropathy.

Vitamin B12.
A neuropathy caused by vitamin B12 deficiency is characterized by numbness of the feet, pins-and-needles sensations, or a burning feeling. Supplementation that restores normal B12 levels is a part of successful treatment of diabetic neuropathy.

Vitamin E.
Vitamin E is a powerful antioxidant that reduces levels of free radicals and oxidative stress. It has been shown to help several types of patients with neuropathy but once again, high doses are necessary.

Always ask your doctor’s advice regarding adding high doses of extra vitamins to your diet; as mentioned before, you could be doing more harm than good.

Capsaicin (mentioned in the section ‘How is it treated?’)
Derived from chilli peppers, capsaicin has proved itself in reducing chronic pain by reducing the stimulation of pain receptors. It is most often used in cream form. At first, capsaicin may cause an unpleasant, hot feeling that causes many people to stop using it. However, once this first phase passes, capsaicin can be effective and although not available everywhere, capsaicin patches are easier to apply.

Alternative treatments for neuropathy

The following nondrug therapies have been shown to reduce the pain associated with neuropathy:
Electrical nerve stimulation
In this therapy, small electrodes placed on the skin deliver tiny electrical impulses to specific nerve pathways. This treatment is effective for some types of pain.

During biofeedback, people learn how to control body responses to reduce pain. Biofeedback is taught with a special machine in a hospital or medical centre. Afterward, patients learn how to control these responses by themselves.

Acupuncture is a traditional Chinese method of pain relief in which very thin needles are placed in specific spots to relieve tension and stress. There is plenty of evidence that acupuncture can help some people with neuropathic problems.

Hypnosis seems to work well for those who have faith in the treatment and you can’t argue with success. It should be performed by a qualified professional.

Relaxation and visualization techniques
These exercises range from deep breathing to imaginary “escape routes” from the pain. Yoga centres may be able to help people learn how to control their pain in this way.
 If you Google 'Cannabis and neuropathy' you will come across a large number of links referring to research in this area. In general, cannabis seems to help large numbers of neuropathy sufferers. It is one of the areas in which the link between neuropathy and hiv is more closely studied mainly because of the large numbers of gay men living in the big cities, for instance San Francisco, where research hospitals are most active in investigating the benefits of cannabis to hiv patients.
A recent Canadian study showed the benefit of smoking marijuana to relieve neuropathic pain and help with sleeping problems. There seems to be a growing body of knowledge regarding cannabis receptors in the human body, giving strength to the idea that cannabis can have an analgesic effect but then you may be confronted with problems of legality and also the fact that it is essentially 'smoking' with all the associated problems. If you are a non-smoker, or an ex-smoker, it is by no means certain if ingesting cannabis by other means (tea, tablets etc) has the same effect.
Again, it is a subject you should be able to discuss with your doctor.
These two videos give a little more background information:
neuropathiehiv010003.jpg neuropathiehiv010002.jpg neuropathiehiv010001.jpg
 Link to Blog Post