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List Of Approved And Unapproved Alternative Therapies For Posting


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#1 Heidi

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Posted 08 November 2006 - 09:53 AM


LIST OF APPROVED AND UNAPPROVED ALTERNATIVE THERAPIES FOR POSTING
SUPPLEMENTS
**You should always consult your physician before taking any supplements/herbs/or using natural remedies

Approved for Posting

Aloe Vera—Okay, but only when mentioned as hand cream or ointment.
Acidophilus—Fine. It is mentioned on our Bowel Involvement page.  We advocate for scleroderma intestinal problems using 1 to 2 tablespoons of yogurt with live cultures per day, every day.
Arachidonic Acid—Okay to mention, but it is a catch-22 in that some arachidonic acid is vital for good health, but too much increases inflammation. Thus, discussions about it should be tempered with the message of “balanceâ€.
Flaxseed oil capsules
Glucosamine—Helps make cartilage stronger and more rigid and there is some research that shows glucosamine supplements relieve pain in some people with osteoarthritis of the knee. Possible side effects include nausea, diarrhea, and increased blood sugar (people with GI problems or who are taking diuretics may especially experience problems with nausea and diarrhea. See http://www.mayoclinic.com/health/glucosamine/AN00619 for more information).
Probiotics—Okay but cannot mention specific products or brands.

Not Approved for Posting

Aloe Vera—Not okay when promoted as a drink or "cure" for scleroderma.
Papaya extract—Not allowed when promoted for scleroderma per se. It may be dangerous for pregnant women, may stimulate the immune system (which is often ill-advised with scleroderma), and can cause esophageal problems.

VITAMINS
**No vitamin, herb or mineral should be promoted as a “cure†for scleroderma, nor can discussions of specific brand names or links to sites that sell herbal supplements be allowed.

All Vitamins Are Approved for Posting
Vitamin D—It is listed on our site, as Vitamin D deficiency may be a cause of scleroderma or other autoimmune diseases.
Vitamin E—Vitamin E can cause hypertension if taken in excess.
Vitamin A—It is fat-soluble and can build up in fatty tissues if used to excess.
Vitamin B6—Can cause nervous problems if used to excess.
Vitamin B12—Is often helpful for pernicious anemia (anemia is a possible complication of scleroderma).
Vitamin C—When taken with iron it can help the absorption of iron. Also, too much of C will just be excreted as will most of the B group.

MINERALS
**Calcinosis is NOT caused by too much calcium in the diet.

Approved for Posting

Calcium—Should not take calcium supplements within 4 hours of thyroid medication.
Iron—Should only take this with doctor's permission or instruction, as iron accumulates in the system.
Magnesium—Can be useful for heartburn and constipation; is the main ingredient in Milk of Magnesia and many antacids.
Liquid Magnesium—Okay to mention, but without any brand name.

HERBS
**"Natural" does not mean that it is harmless or without side effects or interactions with other prescribed medications. Things that are healthy for healthy people are not necessarily healthy for someone with systemic scleroderma.

Approved for Posting (with cautions as noted)

Parsley—Can be a diuretic. However, prolonged use or abuse of any diuretics without medical supervision can lead to dehydration, which can cause kidney damage and an imbalance in normal levels of electrolytes (e.g., sodium and potassium), which are vital to heart, kidney and liver function. When electrolytes are out of balance, you’re at high risk for heart failure and sudden death. If you have a medical condition for which diuretics are prescribed, you would be much better off following your physician’s recommendation than trying to treat yourself with alternative remedies.
Gingko Biloba—Can help prevent Raynaud’s.
Ginseng—Ginseng is another famous tonic product. It comes from a species in the genus Panax, whose name comes from the same root as “panacea†meaning “all-heal." Used regularly, ginseng increases energy, vitality and sexual vigor, improves skin and muscle tone, and builds resistance to stress. Dr. Weil often recommends ginseng to chronically ill patients and to those who are debilitated or lacking in vitality. But he also says to make sure that no medication you're taking is contributing to high blood pressure. (Steroids, birth control pills, decongestants, NSAIDS and diet pills can raise blood pressure. So can over-the-counter medications containing licorice root, guaraná, kola nut, yerba maté, ginseng and yohimbe.) http://www.drweil.com/u/QA/QA348100/. In general, these would not be recommended for systemic scleroderma patients since high blood pressure is a frequent complication of the disease.
Senna, is sometimes suggested for use as a laxative, HOWEVER, senna is an "irritant" laxative http://www.drweil.com/u/QA/QA176926/ and other methods of dealing with this problem should be considered first, especially the intake of ample water and fiber in the diet (not one without the other; too much water alone can cause diarrhea, too much fiber without water can cause constipation.) Senna side effects: If senna is used in high doses or for prolonged periods of time, it can lead to reduced potassium levels in the body. Low potassium levels can result in muscle weakness and potentially dangerous changes in heart rhythm. Chronic, long-term use of senna may also result in aching joints, weakened bones or muscles, and loss of weight due to decreased appetite. Cases of "clubbing" or rounding that occurs at the ends of the fingers have also been reported from taking senna for long periods of time.

Not Approved for Posting

Black Cohosh—Overall, the jury is still out on whether black cohosh reliably relieves menopausal symptoms (and, if so, how) as well as whether it may pose any long-term dangers. As far as side effects go, the herb may occasionally cause mild digestive distress. Studies in rats have not found any significant toxic effects at 90 times the therapeutic dosage over a six-month period, but studies have not looked at long-term effects in other animals or humans. Even if black cohosh relieves your hot flashes, there’s no good evidence to show it protects against the postmenopausal bone thinning that leads to osteoporosis as hormone replacement therapy does. See http://www.drweil.com/u/QA/QA36018/
St. John's Wort
DGL/Licorice Licorice contains a chemical called glycyrrhizic acid, which is responsible for many of the reported side effects (see below). DGL (deglycyrrhizinated licorice) has had the glycyrrhizic acid removed claims to reduce the dangers, but there are no definitive studies to back this up. Adverse effects include sodium and fluid retention, low potassium levels, and metabolic alkalosis, irregular heartbeats, heart attack, kidney damage, muscle weakness, or muscle breakdown. Licorice has been associated with acute pseudo-aldosteronism syndrome, paralysis, metabolic alkalosis and seizure. Licorice has been reported to cause high blood pressure, with symptoms such as headache, nausea, vomiting, and hypertensive encephalopathy with stroke-like effects (for example, one-sided weakness). High doses of licorice may cause temporary vision problems or loss. Ocular side effects have been reported. Central retinal vein occlusion has been associated with licorice. A case report exists of licorice-induced hypokalemia associated with dropped head syndrome (DHS).
Neem (any products where Neem is the primary active ingredient)—All of the research we could find has been done with animals only; no human research showed that it is efficacious.

OTHER NATURAL FOOD REMEDIES

Not Approved for Posting

Quinine—Although it seems to be used frequently for leg cramps, recent studies have found some very serious sides effects ranging from blindness, pulmonary edema, and death. Here's a short statement from MedicineNet: “Quinine has been used outside of malaria as a remedy for fever and pain and to treat and prevent leg cramps. Prolonged administration of quinine may produce toxic symptoms such as deafness, disturbances in vision, skin rashes, and digestive upsets.â€
Grapefruit Seed Oil—Do not post anything about using grapefruit seed oil on the message board at the present time. It is definitely NOT to ever be discussed as a cure for scleroderma and we are currently looking for more research to support its use as a digestive aid.
Caffeine, chocolate, peppermint or ginger can all exacerbate problems with heartburn or Raynaud’s for those with systemic scleroderma. Also, these things may never be discussed as a cure for scleroderma or associated ailments (e.g., ginger for migraines).

Approved for Posting

Manuka Honey—This is a rare exception to our “brand name†rule. Manuka honey is not just “regular†honey and there is research to indicate it may be useful for healing of skin ulcers.
Fish Oil—Useful for arthritis and reduces inflammation.
Green Tea—An article discussing its possible benefits in preventing autoimmune disease has been posted in the sclero.org news room: Green Tea

INTERNATIONAL CLAIMS OR CLAIMS FOR CURES

Approved for Posting

DMSO—OK when mentioned for Interstitial Cystitis as a treatment or cure; and with some disclaimers, for use for scleroderma; listed in our Clinical Trials section of the main ISN website
MSM—OK when mentioned as an anti-inflammatory; MSM is a form of DMSO (which see).
India—There is some scientific merit to the claims for Turmeric, Curcumin, and Curry.
Nonobacteria—We track this item on our Alternative Treatment Page on the website

Not Approved for Posting

Antibiotic “Cure†for Scleroderma—Disproved with major clinical trial; see our Clinical Trials page.
Chinese “Curesâ€â€”they haven’t cured scleroderma in China either; we have a link to read on our Alternative Treatment page.
Mexican “Cureâ€, “DNA Cureâ€
Minocycline “Cureâ€â€”Disproved with major clinical trial; See our Clinical Trials pages.

MSM—Not OK if touted as a “cure†for scleroderma (only okay in context of an anti-inflammatory).
Roadback Foundation—David Trentham-Solely promotes the Antibiotic “Cure†which has been disproven with major clinical trial: See our Clinical Trials pages.
Low Dose Naltrexone—Is currently being touted as an effective treatment for all autoimmune diseases, but only has one phase II study to date and that was for Crohn's disease. Although it has received funding from NIH for a phase III study, it's still for Crohn's, so any mention of this treatment for scleroderma should be "unapproved" until more studies are done.

SPECIAL DIETS
**A well-balanced nutritious diet is important for people with systemic, unless doctor advises otherwise. See below for information for specific diets/foods that might be discussed.

Alcohol—Can disrupt sleep, cause heartburn, induce Raynaud’s, interact with medications. Excessive use of alcohol and scleroderma really do not mix well at all.
Allergy Diets—Allergy diets help with allergies, but scleroderma is not caused by allergies.
Anti-inflammatory diet—There are some articles about it on the sclero.org website so okay to mention. Just remember that this diet has not been proven as a treatment or cure for scleroderma. It is possible, however, that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet.
Atkins—A high-protein, no-carb diet, which can be dangerous for systemic scleroderma or anyone who is susceptible to kidney problems.
Caffeine/Coffee—Not advised if Raynaud’s or digital ulcers or heartburn are not under adequate control.
Dash Diet for Hypertension—Some articles about it on the sclero.org website, so okay to mention. Just remember that this diet has not been proven as a treatment or “cure†for scleroderma. It is possible, however that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet.
Elimination Diets—Sometimes doctor advise for allergies or GI problems, but NOT a cure or treatment for scleroderma; however gluten may be a factor in causing or exacerbating scleroderma. See a href="."/scleroderma/autoimmune/celiac-disease/a-to-z.html">Celiac Disease and Gluten Sensitivity.
Gluten-Free Diet—There is evidence that gluten may play a significant role in causing or exacerbating symptoms of scleroderma in some people. See Celiac Disease and Gluten Sensitivity. People who are sensitive to gluten may also be sensitive to casein (milk and all milk by-products) and soy because they are very similar proteins. Gluten is found in wheat, barley, rye and all their by-products.
Liquid Diets—Are sometimes necessary with severe GI involvement in scleroderma. Even recipes are okay in this regard.
Fasting—Very dangerous with systemic scleroderma, attempt only with a doctor’s supervision.
Jenny Craig—Well balanced, but wording should be changed to just "diet" or “weight loss program†to avoid brand name promotion.
Mediterranean Diet—Some articles about it on the sclero.org website, so okay to mention. Just remember that this diet has not been proven as a treatment or “cure†for scleroderma. It is possible, however, that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet.
Milk/Dairy/Casein Elimination Diet—People who are sensitive to gluten may also be sensitive to casein (milk and all milk by-products) and soy because they are very similar proteins. See Gluten-Free Diet, above.
Peppermint—Can induce heartburn in some people by relaxing the lower esophageal sphincter (LES).
Pop/Soda/Soft Drinks with Caffeine—Not advised if Raynaud's or digital ulcers or heartburn are not under adequate control. Brands with lots of caffeine like Mountain Dew can be major causes of Raynaud's from the combination of the cold can and the caffeine jolt. Some of us can tolerate caffeinated coffee but not pops.
High Protein Diets—Can be dangerous for systemic scleroderma or anyone else susceptible to kidney problems.
Raw Foods Diets—Can disrupt G.I. function in systemic scleroderma.
South Beach—Well balanced, but wording should be changed to just "diet" or “weight loss program†to avoid brand name promotion
Soy Elimination Diet—People who are sensitive to gluten may also be sensitive to casein (milk and all milk by-products) and soy because they are very similar proteins. See Gluten, above.
TPN—Stands for Total Parenteral Nutrition, or tubal feeding. This is often necessary in end-stage GI involvement and discussion about it is entirely allowed.
Tubal Feeding—This is often necessary in end-stage GI involvement and discussion about it is entirely allowed.
Vegetarian—Vegetarianism does not “cure†scleroderma and should be attempted only with doctors guidance to make sure essential nutrients are included. It’s okay to mention being a vegetarian, but not to promote vegetarianism as a cure for scleroderma.
Weight Watchers—Well balanced, but wording should be changed to just "diet" or “weight loss program†to avoid brand name promotion.
Whole Foods Diets—Usually well balanced, but wording should be changed to just "diet" or “weight loss program†to avoid brand name promotion.

DRUGS

Alcohol—Can disrupt sleep, cause heartburn, induce Raynaud’s, interact with medications. Excessive use of alcohol and scleroderma really do not mix well at all.
Cocaine—This can literally cause scleroderma. Our link to the study went bad on the site, but just FYI, it can cause systemic scleroderma. Can be discussed, but only within the context of being a known cause of scleroderma.
Marijuana—It is illegal in the US, so we do not discuss even medical use of marijuana or the ongoing debate about it.
Nicotine—Definitely not good for systemic scleroderma, not good for health in general. OK to discuss when used in context of not healthy or about people who want to quit or have quit. Brand names of cigarettes are not okay. An ingredient in cigarettes is suspected of being beneficial to scleroderma so news articles about potential clinical trials for it are also okay; but this topic is allowed to come forth only through our newsroom articles.
Pain Medications—Okay when used generically but not okay when mention specific drugs such as "pain medication" or "Oxycontin" etc. (edit to be just "pain medication") and such, because some drug users haunt message boards trying to look for sources they can burglarize or con out of drugs.

EXERCISE
**Everyone should check with the doctor before beginning a new exercise program, due to considerations such as heart, lung or muscle involvement (this includes Tai Chi, Yoga, Qigong, etc.).

THERAPIES
**We do not promote any certain clinics or doctors for alternative therapies. It is one thing to have your back feel better after chiropractic adjustments; another to say all your scleroderma symptoms have gone in remission due to chiropractic treatment.

Approved for Posting

Acupuncture—OK for symptoms, but it is not a treatment or “cure†for scleroderma. Do not mention doctor’s name or clinic.
Ariculotherapy—OK for symptoms, but it is not a treatment or "cure" for scleroderma. Do not mention doctor’s name or clinic.
Chiropractic—OK for symptoms, but it is not a treatment or "cure" for scleroderma. Do not mention doctor’s name or clinic.

Not Approved for Posting

Colonic washouts—Could cause perforation in SD patients, so should only be done under the advice of a medical doctor, preferably proctologist, if things are that bad.
Copper (bracelets, etc.)
Crystals, Quartz
Infrared therapy/Anodyne (pain relief) system—There is currently no manufacturer or brand of infrared therapy or anodyne (pain relief) system on the market with an FDA approval specifically to treat neuropathy. Anyone may claim a patent to treat neuropathy or other conditions, but a patent has nothing to do with FDA classification.
Magnetic beds, bracelets, shoes, etc.
Naturopaths—Naturopaths are only licensed in a few states so we do not mention them on the forums.
Shaman Healing—Not OK for posting as it is specific to a certain belief system and we avoid all mention/discussion of specific belief systems (can discuss our faith and beliefs in general terms only).

(updated 2 May 2008)



#2 jefa

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Posted 02 May 2009 - 09:36 PM

The List of Approved and Unapproved Alternative Therapies for Posting has been updated. We will continue to review and evaluate as new studies provide relevant information.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Jeannie McClelland

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Posted 03 May 2009 - 04:25 AM

Thanks, Jefa!

This is one I refer to all the time.

Warm (and grateful) hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network