Today's post comes from the Positive Side (see link below) and was written by Lark Lands, who has been featured on the blog before. Interestingly, it was written for people with HIV, in 2001 but is not out of date because there is nothing here that doesn't apply to neuropathy sufferers today. You may also find it a little prescriptive and automatically reject the idea of someone, 'telling you what to do' but even if you just stop and think about one way you can improve your health situation, you've taken a step in the right direction. Apart from that, everything suggested is good advice - we all know it! We all also know that the pain and/or discomfort of neuropathy can perversely make you lazy because the idea of making an extra effort, just seems too much. Therefore today's post is just a gentle reminder, nothing more.
10 Commandments for Living Long and Well with HIV
by Lark Lands
Commandment #1: Manage your disease. Do the work.
Avoid the Humpty Dumpty Syndrome. We can’t keep waiting for people to fall apart so we can try to patch them back together. There are two parts to this commandment:
Don’t wait to start managing this disease. Begin now.
Understand what it really means to manage a disease. It’s hard work that never ends, but it’s worth it when the payoff is a disease so well managed that you are living well with it, not just longer.
Commandment #2: Eat what’s good for you.
If you don’t have the nutrients, you can’t build the CD4 cells, T cells or any other immune cells. You’ve got to have:
- good levels of protein
- good levels of unrefined complex carbohydrates (brown rice instead of white; whole-grain breads, crackers, cookies and pasta instead of those made with nutrient-poor white flour)
- lots of fresh fruits and vegetables
moderate amounts of only the good kinds of fats (mono-unsaturated fats like olive oil and natural fats like butter; avoid the partially hydrogenated oils widely found in margarines, shortenings and many baked goods and snack foods. Read the labels!)
- Wash all that down with lots of healthful liquids (water, juices, teas and the like, not chemical and sugar-loaded junk drinks). That’s the way you give your body the building blocks it needs to keep up the immense battle against HIV. Always make sure the food you eat and the water you drink is safe.
Commandment #3: Do everything necessary to help your body digest, absorb and use food properly.
Even if you’re eating the right things, it won’t do you any good if you don’t have good digestion and the ability to use the nutrients. Many people need to improve how their bodies handle food by supplementing with pancreatic enzymes, vegetable enzymes, hydrochloric acid, acidophilus, L-carnitine and L-glutamine.
Commandment #4: Supplement your good diet with nutrients that will help you have slower disease progression and a lot fewer symptoms along the way; always include optimal levels of antioxidants.
Research has shown that supplying the right level of nutrients in the body is associated with reduced disease progression and improvement in long-term survival. In addition, nutrients and enzymes can reduce, eliminate or contribute to eliminating many drug side effects and other symptoms such as fatigue, skin problems, diarrhea, neuropathy, digestive problems, memory or other mental problems, wasting and others.
Commandment #5: Protect your body in every way possible from the damage that infections cause and give your body what it needs to repair itself when damage does occur.
First, use the best available treatments; then supply the particular nutrients that the body can use to repair itself. In particular, repair the intestines with zinc, vitamin A, vitamin B6, vitamin E, bioflavonoids, vitamin C and, especially, L-glutamine. If necessary, use doses of up to 30 to 40 grams of L-glutamine per day until repair is effected, followed by lower doses (5 to 10 grams daily) for maintenance. You can’t absorb nutrients or drugs if you don’t keep your intestines healthy, for which glutamine is crucial.
Commandment #6: Do prophylaxis, where appropriate, and add to your pharmaceutical prophylactic regimen the nutrients and natural therapeutics that help protect you from infections and that help you fight them when you get them.
Important nutrients for protection from infections: L-glutamine (intestinal, lung, oral and cervicovaginal infections), acidophilus (Candida overgrowth and other intestinal infections), oregano extract (Candida overgrowth), folic acid (anal or cervical cancer), and a good level of nutrients in general. Remember: Your body’s response to any infectious agent or abnormal cell is absolutely dependent on the nutrients needed for a good immune response.
Commandment #7: When appropriate, take the best available antiretrovirals in the best possible combinations and, while you do it, protect your body from their side effects.
When you reach the point at which HAART (highly active antiretroviral therapy) is appropriate, it is terribly important to remember that you must have good nutritional status for the body to use drugs effectively. By maintaining the optimal nutrient levels that promote strong immune function, your body will be better able to work with the drugs to suppress the virus and slow disease progression. When the virus is suppressed, optimal nutrients will also help in the restoration of lost immune function since nutrients are the building blocks for immune cells. Always remember that virtually every known nutrient is related to some aspect of immune function.
Last, but definitely not least, nutrients may help protect you from drug side effects:
- for liver-toxic drugs (indicated by increases in your liver function tests): alpha-lipoic acid, NAC, vitamin C, L-glutamine, L-carnitine, silymarin (milk thistle extract)
- for the toxicity to mitochondria (your cells’ energy factories) caused by nucleoside analogues (which may, in turn, cause or contribute to neuropathy, muscle aches, some aspects of lipodystrophy, and lactic acidosis): carnitine, coenzyme Q10, the B vitamin riboflavin, a plentiful supply of all the important antioxidants (alpha-lipoic acid, N-acetyl-cysteine, vitamin E, vitamin C, carotenoids and selenium)
- for drugs that cause neuropathy: alpha-lipoic acid, L-acetyl-carnitine, gamma-linolenic acid (GLA), magnesium, B vitamins (including B6, B12, thiamine, biotin, choline, inositol)
- for bone-marrow suppression: B12, vitamin E
- for kidney-stressing drugs (such as indinavir/Crixivan): Drink lots of fluids!
In addition, to help your body process drugs, supply the nutrients that your body will require when breaking them down. For AZT, that means B1, B3, B6, B12 and magnesium. For ddI, you need molybdenum (a microtrace mineral), riboflavin and iron.
Commandment #8: Handle the hormone problems of this disease.
For both men and women, maintaining testosterone and using, where appropriate, recombinant human growth hormone (Serostim) may help prevent the loss of the body cell mass (muscle and organ tissue) that keeps you alive, while helping you look, function and feel better. Women may also need female hormone replacement to prevent worsening of PMS, perimenopausal or menopausal symptoms.
Commandment #9: Exercise.
Just do it. You need to build up the muscles with progressive resistance exercise like weight training. That’s what gives you a body with plenty of the lean tissue that you need for survival.
Commandment #10: Program the mind toward healing.
The power of the mind to boost the body toward healing is amazing. And the power of hope is one of the best tools you can have for long-term survival. Bob Publicover, incredibly long-term (two decades and counting) survivor, says it best: “Never give up, never give up, never give up.”