LUPUS LUPUS's topics - tribe.net

Plaquenil and Immuran

Mearah — Tue, 10 Jun 2008 23:25:35 GMT

New doctor - long story - just put added Plaquenil in with the Immuran. Was on Plaq for about a year, didn't do much and have been on Immuran for over a year - better so far. Anybody else had the combo and how did it work for you?

posted in LUPUS LUPUS - 0 replies

Lupus Advocacy Day

Raven_Starsong — Sat, 02 Feb 2008 02:46:58 GMT

Greetings fellow butterflies--

I wanted to pass this info on. I'm working out the finances now so that I can go to this event. It's time to get some legislation passed and get some $$$ into research to come up with better testing, better treatment, and hey, while we're at it...a CURE!!!

Now is the time to have your voice heard on Capitol Hill! Join the Lupus Foundation of America in Washington, D.C. for our 2008 Lupus Advocacy Day!

* Monday, March 10, 2008 - Westin Alexandria Hotel
* Tuesday, March 11, 2008 - Capitol Hill, Washington, D.C.

Our two-day 2008 Lupus Advocacy Program will begin on March 10th with a training session and dinner at the Westin Alexandria Hotel to discuss how to make the most of your meetings with your Members of Congress. The registration table opens at Noon and the training is scheduled to start at 2:00 p.m. We will have training until 6:00 p.m.; a "mix and mingle" reception from 6:00-7:00 p.m.; and dinner with a guest speaker from 7:00-8:30 p.m.
On Tuesday, March 11th, representatives of the LFA and its chapters, lupus physicians and researchers, and other advocates will travel to Capitol Hill to meet with Members of Congress to inform them about how debilitating lupus can be. We will have an informal breakfast at the Westin Alexandria Hotel starting at 7:00 a.m., load the buses at 8:00 a.m. and head to Capitol Hill. We will try to start with everyone’s meetings on the Senate side from 9 a.m.-Noon; a luncheon in the Dirksen Senate building from Noon-2:00 p.m.; meetings with Representatives from 2:00-4:00 p.m.; and an informal debrief session 4:30-6:00 p.m.
The LFA needs you, your friends, family members, and chapter members to visit your federal Representatives and Senators to urge them to support more funding for lupus research and education.

To register, go to www.lupus.org/newsite/pag...tration.htm. The registration fee for Lupus Advocacy Day is $35 per person, which includes a snack and dinner on March 10th and breakfast and lunch on March 11th.
The discounted room rate for the Westin Alexandria Hotel is $229 per night for the event. The cutoff date to book your hotel room for this discounted rate is February 22, 2008. To learn more, visit this link www.starwoodmeeting.com/StarGr...Web/res
One other note ... we've had several questions about which airport to fly into. The easiest airport to fly in to for the LFA Advocacy Day is Reagan National Airport (code: DCA).
Don’t let cost deter you -- you may be able to share a room! If you have any questions about the event, please contact Sara Chang at chang@lupus.org or by phone at 202-349-1169.

posted in LUPUS LUPUS - 1 reply

metheltrexate

zsuska — Wed, 07 Nov 2007 20:25:25 GMT

greetings all,

do any of you take this medication? i am currently on plaquenil and celebrex but it isn't working anymore. i used to take prednisonoe too but weaned myself off of it for obvious reasons even though it worked miracles. my doctor wants to switch me to metheltrexate but i am aprehensive about doing so. i don't hear good things about it. so i wondered if any of you had any first hand experience with it.

i have been eating all organic and use natural herbs/teas etc myself as well. i am seeing a holistic doctor next week that comes highly recommended so i am hoping she can help so i don't have to change medications. i will let you all know what i find out from her.

thanks for any input you all have.

many blessings

posted in LUPUS LUPUS - 2 replies

Too much??

Mearah — Wed, 03 Oct 2007 23:39:15 GMT

How much bitching is too much?
Like us all I have my good days and my bad days. But then some new pain comes along, some where that really did not hurt before. So I mention it to the hubby and it is like he does not believe me. He literally blew me off yesterday.
He is so generally so supportive, but I know he gets frustrated that I simply can't keep up with him or that I hurt. But he is my life line and when something new comes up - I need to talk about it. But I feel that he is tired of listening to me.
I have always wondered about the obits where they talk about the person who just died never complained a day in their life. Is that true?? Are there people out there with incredible pain and diseases that never complain? Or am I just being a whiny baby?
Then of course the guilt that comes from being relatively mobile and able to keep going versus those that are so much worse off than myself. Each persons pain is different and personal. How we handle it and express it is individual. I deal best by talking about it with those closest to me. But maybe I need to just shut up and deal with it.
How do you all work with it?

posted in LUPUS LUPUS - 3 replies

Symptoms of Lupus

sinaguavalleyranch — Thu, 19 May 2005 14:57:54 GMT

Achy joints (arthralgia) 95%
Fever more than 100 degrees F (38 degrees C) 90%
Arthritis (swollen joints) 90%
Prolonged or extreme fatigue 81%
Skin Rashes 74%
Anemia 71%
Kidney Involvement 50%
Pain in the chest on deep breathing (pleurisy) 45%
Butterfly-shaped rash across the cheeks and nose 42%
Sun or light sensitivity (photosensitivity) 30%
Hair loss 27%
Abnormal blood clotting problems 20%
Raynaud's phenomenon
(fingers turning white
and/or blue in the cold) 17%
Seizures 15%
Mouth or nose ulcers 12%

posted in LUPUS LUPUS - 10 replies

shaky legs

Palespider — Mon, 06 Feb 2006 09:30:34 GMT

I havent stepped into a class for over a year.. and yesterday i walked into Jill Parker beginners class and had almost forgotten how fast paced classes are. Im so used to just popping in a DVD and fast forward and replay parts when i dont catch it. It was really embarrising how i kept on stumbling.. at one point my legs started to tremble and shake so badly i just had to stop and stand in the back. It was that, the legs trembling, that made me stop dancing a year ago, the trembing got to bad that they gave out from under me and a friend had to carry me to her her. This time i didnt push myself but i also dont want to stop again.

sorry about the rant but dose anyone else feelings like this?

posted in LUPUS LUPUS - 2 replies

North Denver, Colorado Medical Marijuana Discussion Group

COmidnightrider46 — Tue, 14 Feb 2006 15:47:16 GMT

North Denver, Colorado Medical Marijuana Discussion Group

Zheng Chi Medical Marijuana Discussion Group
Front Range Community College(112th & Federal), Room L211
6-8pm Monday, March 27
&
6-8pm Monday April 24

Zheng Chi or "Righteous Chi" is the Chi that is released to eliminate PAIN through the needles of Chinese Acupuncture, an effort that seems to be so much a regular part of my life, as I suffer with my Fibromyalgia flare ups! An entire team of doctors regularly helps me keep a better focus on quality of life, and to minimize the severe pain which plagues me. Medical marijuana is only one of the components for relief.

DISCLAIMER: This is solely an Educational gathering, bringing the public, medical marijuana patients, caregivers, interested parties, and others together for the purpose of discussing answers to questions surrounding the option of medical marijuana in Colorado. ABSOLUTELY no medications will be dispensed and NO DOCTOR will be onsite. RULES PROHIBITION any discussions of specific instances of securing medication with "NO Drug Dealing" allowed in "any way, shape or form" onsite during this educational discussion forum.

posted in LUPUS LUPUS - 0 replies

Herbal & Homeopathic remedies

Raven_Starsong — Wed, 18 Jan 2006 16:56:43 GMT

I have SLE and have been researching herbal and homeopathic remedies for lupus for the last year. There's not a whole lot of information out there (even less than there is for traditional, allopathic medicine), so I'm asking for your experiences. I have completely abandoned allopathic medicine (the last drug I weaned myself from was prednisone and that was stopped completely in early December). The meds weren't helping the symptoms enough to balance out the negative side-effects (like almost dying from pneumonia the first time we tried an immuno-suppressant). I live in Maine and the nearest doctors with any real experience dealing with lupus are in Boston.

Anyway, I am a vegetarian, health food freak, hippy, granola, etc. and have always trusted Mother Nature to provide what I need, so I decided that I will not treat this dis-ease differently. I do not advocate others stopping medications, I'm just sharing some other options. These natural remedies MAY be compatible with allopathic medicines (talk to your doctor), I wanted to test them out with a "clean slate" to see what the effects are.

I have not come up with the correct formulas yet, and expect it will take over a year of self-testing before I do. But, here are the statistics: less than 10% of all lupus sufferers will go into remission; of those who do attain remission, over 50% enjoy that remission for decades. Most remissions that have occured, happened using natural remedies not drugs. And, everyone who has a formula is selling it at exorbitant prices. I intend to share my research freely (like I said, I'm one of those hippy, granola, peace & love to all types). To be clear, I am not trying to find a cure, I'm trying to stimulate full remission.

So, here's what I've learned so far:

Chamomile tea: stops the formation of IL-8 (a tissue destructive hormone), can be used frequently with no known side effects, especially helpful in the evening as a sleep aid

Codonopsis tablets: decreases formation of antibodies that target DNA in healthy cells, recommended dosage 1 gm, 3x daily

Feverfew capsules: relieves inflammation and pain in joints, recommended dosage 1000 mg/day while symptomatic

Hawthorn tablets: relieves fatigue from exercise or exertion, recommended dosage 100-250 mg, 3x day

Hoelen tea: regulates immune system to stop inflammation, protects kidney tissue, recommended dosage 1.5 gm, steep in hot water for 20 minutes, 1 cup 3x day

Licorice glycyrrhizin tablets: relieves pain and inflammation, increases effectiveness of steroids (especially prednisone), should be taken with lots of potassium to combat potential liver problems, recommended dosage 200-800 mg/day (start with lowest dosage), when first beginning use for 3 days on 1 day off rotation, then slowly move to 6 weeks on followed by a 2 week break rotation to allow the liver to cleanse without reducing effectiveness, DO NOT USE DGL variety of licorice at any time, for any reason

Milk Thistle Silymarin gelcaps: cleans and protects liver (always use when taking licorice), still working on recommended dosage, there is a tribe that deals only with this herb

Stinging Nettle Root (NOT leaves) capsules: stops arthritic inflammation and pain, may prevent further tissue damage, recommended dosage 600-900 mg/day

Tripterygium tincture: retires tissue-destructor T-cells, much more potent than steroids and cyclophosphamide, still working on dosage

Astragulus: immune support, recommended dosage 500-1000 mg/day

Other helpers:

Fritillaria syrup for coughs and colds (eases symptoms of cold without flaring symptoms of lupus

Black Currant oil 500 mg 2x day (still working out the specific areas this helps)

Vitamin E is important so eat lots of nuts and seeds (better than supplements)

L-Carnitine supplements help with fatigue

Avoid all vegetables in the night shade family (tomatos, eggplant, etc.) and also avoid alfalfa at all costs. Alfalfa increases production of ANA. Being a vegetarian health food freak, this was the hardest lesson of all for me.

What I haven't found anything on is a good remedy for the butterfly and other rashes and that pesky Raynaud's (an especially miserable symptom for someone living in Maine--especially this time of year).

As you can see from the list above, I have focused a great deal of my early research on combatting fatigue since that and constantly swollen lymph nodes are my most debilitating symptoms, especially since returning to a full-time job 3 months ago. My neurologist can attest that I have an extremely high tolerance for pain, but I'm making that my next priority in research.

Before using any of the remedies I have listed here, I recommend that you 1) talk to your doctor to see if they know of any potential interactions with your current meds (and don't accept a shrug and "guess it can't hurt"--that's clear indication they have NO experience in this area and you should contact a Naturopathic doctor with these questions); 2) research the potential side effects of these remedies and any possible links they may have to any substance you are allergic to using the web, a book from your local library or health food store (most have house copies you can view), or ask me for more specific info; and 3) find a reliable vendor for the products--some guarantee potency, etc. and some of these items can be hard to find.

Sorry this is such a long post, but it's a lot of info and I tend to be long-winded. I'd love to hear opinions, experiences, etc. either here or in my other lupus tribe, LIVING! with Lupus.

A couple of helpful websites:

Free homeopathy software (be sure to choose the new 30-second model): www.abchomeopathy.com

American Association of Naturopathic Physicians: www.naturopathic.org

posted in LUPUS LUPUS - 0 replies

The Spoon Theory

bellaflora — Wed, 07 Dec 2005 06:28:38 GMT

Can anyone else relate to the Spoon Theory?

http://www.butyoudontlooksick.com/the_spoon_theory/

posted in LUPUS LUPUS - 1 reply

Rituxan?

bellaflora — Mon, 05 Dec 2005 05:18:21 GMT

Has anyone had any experience with Rituxan? I have Lupus (SLE) and Nephritis. At this point, I'm working on 50% kidney function. I'm using Cellcept and kidneys are getting better. My Nephrologist and Rheumatologist are suggesting Rituxan as an alternative to Cellcept, a major immunosuppressive. I would love to learn more about it from someone who has tried it.

http://www.lupusresearch.org/lru_fall_05.html

posted in LUPUS LUPUS - 3 replies

My Nutrition by Langston Henry

Tue, 22 Nov 2005 00:09:58 GMT

This is something I really have to work on. GAH for one thing I CAN'T COOK. I know what you are thinking.
you're like "That's silly,.get a book dude. "
I'm all like "NUH HUH"
and you're like "UM YES"
and I'm like "I can't hold a knife or pots and pans"
and your like "HA HA HA make me feel bad"

anyway my nutrition pretty much consists of pasta and some small amount of meat and some pasta, or rice, or something wrapped in a taco. As much vegatables as I can muster. I get home made granola instead of eating cereals. I'm taking potassium since my waters all out of wack.

I am switching to coffee from diet drinks. and thats about it.

I eat simply. For dessert type stuff usually some slowchurned (whatever that means) ice cream. I guess that's loaded with splenda but i have to conquer diet pepsi before I attack the icecream.

I take a lot of medicine. There's got to be some kind of nutrition in there.

I am currently trying to figure out how I can eat a lot of spirolina from Christopher Hills, but they don't seem to be entirely up and running. I'd be sad if they were having problems ecause he ws my hero.

posted in LUPUS LUPUS - 4 replies

Types of Lupus

sinaguavalleyranch — Thu, 19 May 2005 15:01:44 GMT

Discoid (cutaneous) lupus is always limited to the skin. It is identified by a rash that may appear on the face, neck, and scalp. Discoid lupus is diagnosed by examining a biopsy of the rash. In discoid lupus the biopsy will show abnormalities that are not found in skin without the rash. Discoid lupus does not generally involve the body's internal organs. Therefore, the ANA test may be negative in patients with discoid lupus. However, in a large number of patients with discoid lupus, the ANA test is positive, but at a low level or "titer."

In approximately 10 percent of patients, discoid lupus can evolve into the systemic form of the disease, which can affect almost any organ or system of the body. This cannot be predicted or prevented. Treatment of discoid lupus will not prevent its progression to the systemic form. Individuals who progress to the systemic form probably had systemic lupus at the outset, with the discoid rash as their main symptom.

Systemic lupus is usually more severe than discoid lupus, and can affect almost any organ or organ system of the body. For some people, only the skin and joints will be involved. In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected. Generally, no two people with systemic lupus will have identical symptoms. Systemic lupus may include periods in which few, if any, symptoms are evident ("remission") and other times when the disease becomes more active ("flare"). Most often when people mention "lupus," they are referring to the systemic form of the disease.

Drug-induced lupus occurs after the use of certain prescribed drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension) and procainamide (used to treat irregular heart rhythms). Drug induced lupus is more common in men who are given these drugs more often. However, not everyone who takes these drugs will develop drug-induced lupus. Only about 4 percent of the people who take these drugs will develop the antibodies suggestive of lupus. Of those 4 percent, only an extremely small number will develop overt drug-induced lupus. The symptoms usually fade when the medications are discontinued.

Learn more...

posted in LUPUS LUPUS - 1 reply

Hello-Former Executive, diffusing CREST, Burning Man

Mon, 21 Nov 2005 18:15:12 GMT

Hi

I'm Langston. I've started my blog here called "Planet LUpitor". I have music and art blogs in other places but tribe.net is my "staying healthy" place.

So I'm still getting my page together so come by and say hi.

I am looking to go to Burning Man if I can swing it this year. I am looking for a crew to work with. If there was a crew that had floorspace and wanted me to start working on the pagentage right away in Feb. I would totally be there. With Reynauds I welcome dry temperatures in 100+ range. I can get frostbite at room temperature.

I'm unemployed and I have nothing to do so I can absorb as much correspondence as people can send me right now which is a difference from when I was a high anxiety executive. The diffusing CREST esp the severe Reynauds killed that.

I live on a desert island known as Bodie island off the east coast of north carolina AKA nags head. There is not much happening here. Especially culturally.

People say I need to relax more but I don't know if loneliness is really relaxation.

posted in LUPUS LUPUS - 4 replies

A Friendly Skeptic Looks at Glyconutrients

sinaguavalleyranch — Thu, 14 Jul 2005 02:04:50 GMT

A Friendly Skeptic Looks at Glyconutrients and Ambrotose®
By Dr. Ralph Moss

from CancerDecisions.com Newsletter

Note from Dr. Moss: This week I begin a two-part discussion in my occasional Friendly Skeptic series, looking at a group of products sold by Mannatech, Inc., a network marketing giant. My goal, as a Friendly Skeptic, is not to prejudge or to disparage unfairly, but simply to determine whether or not there is a solid scientific basis for the claims made on behalf of these products.

I take the same strictly objective, evidence-based approach in the 200 Moss Reports, each one of which is an in-depth study of the available conventional and alternative treatments for a particular type of cancer. My aim in writing these reports is to present an impartial and clear-eyed analysis of the most promising treatment options. People dealing with cancer need a reliable source of up-to-date information, a source they can count on to be honest and even-handed in assessing the many conflicting claims that assail them. The Moss Reports are designed to do just that.

If you would like to order a Moss Report for yourself or someone you love, you can do so from our website at www.cancerdecisions.com, or by calling Diane at 1-800-980-1234 (814-238-3367 from outside the US). We look forward to helping you.

Recently a client asked my opinion of Ambrotose®. She had advanced cancer and her doctors held out little hope. Her medical history had been a succession of failures. After being told that her condition was essentially untreatable, she found details of a promising clinical trial on the Internet. She tried to enroll, but at the last minute was rejected because of the trial's rigid exclusion criteria. (It turned out that her 9-millimeter diameter tumor was one millimeter too small to permit her inclusion in the study.)

She became increasingly frustrated with the medical profession, perhaps understandably transferring onto her doctors some of the anger she felt at this cruel disease. She then turned towards alternative medicine. In particular, a neighbor sold her on a substance called Ambrotose.
What exactly is Ambrotose, and does it have any role in the treatment of cancer?

Ambrotose is the brand name for a mixture containing certain plant sugars called glyconutrients. It is widely promoted for its health-giving properties. Ambrotose is produced and marketed by Mannatech, Inc., a publicly traded company based in Coppell, Texas, which does about US $190 million per year in business (2003) and has grossed more than US $1.5 billion since its start in 1994. Its various nutritional products - there are now about thirty - are sold through what the company calls a global network marketing program.

In this sort of multi-level sales structure, independent entrepreneurs become associated with the parent company as private contractors. They themselves receive a discount for shopping within the network, for selling products, and for expanding their network of people (the so-called "downline") who are doing the same thing. Those who sign up receive a percentage of the profits that are generated by the network of all other entrepreneurs who are introduced to the system by him or her, and also of the profits generated by the people introduced by those entrepreneurs, and so on.

In practice, this means that the sales pitch you hear tends to come from someone you know personally, who not only uses and sells the stuff, but has a strong incentive to recruit you to become a "downline" salesperson of the same products. I have had people in my own extended family try to convince me of the virtues of Mannatech's products.

Only later did I realize this was not a disinterested excursion into medical science but part of a well rehearsed sales pitch. It is hard to resist this sort of pressure when it is a friend, neighbor or relative who comes a-calling. This helps account for the remarkable growth not just of Mannatech but of this network marketing phenomenon. The network marketing of health products (including other huge sellers such as noni and mangosteen juices) appeals to two of the most fundamental human desires, the simultaneous quest for health and wealth.

Mannatech began its meteoric rise in the world of network marketing with the development of a proprietary substance called Manapol®. The company offers a scientific rationale for the use of this product, claiming that various sugars - technically, monosaccharides and polysaccharides - provide specific sugars to the body that help support the immune system and facilitate cell-to-cell communication. In 1996, the company introduced its Ambrotose Complex®, a blend of Manapol and additional glyconutrients.

Describing Ambrotose, the company's website states the following:
Ambrotose is a glyconutritional, a blend of specific plant saccharides that provides support for the immune system. These saccharides are necessary for the body's creation of glycoforms, the structures on cell surfaces used to ‘talk' to other cells.

Ambrotose later evolved into Ambrotose Complex®, which, according to the company, is a mixture of Arabinogalactan (a gum from the Larix decidua tree), Manapol, which is a gel extracted from the inner leaf of aloe vera gel plant, gum ghatti, and gum tragacanth. Advanced Ambrotose in turn is said to contain gum acacia, aloe vera gel extract (inner leaf gel) or Manapol powder, oat fiber, brown macroalgae (Undaria pinnatifida) sporophyll, vegetarian glucosamine-HCl, ghatti gum, gum tragacanth and xylitol.
The price of Advanced Ambrotose is between $69 and $76 for 75 grams in bulk, almost one dollar per gram or $28 per ounce.

In 2001, the company further broadened its line of proprietary ingredients by developing Ambroglycin®, which it describes as a balanced food-mineral matrix that helps deliver certain nutrients to the body. Additionally, in 2004 Mannatech developed a proprietary blend of antioxidant nutrients, called MTech AO Blend, which is used in its proprietary antioxidant product Ambrotose AO®. (AO stands for antioxidants.)

Trademarked Terminology

Don't be surprised if you have difficulty keeping all this new and registered or trademarked terminology in mind. It is dizzyingly complicated. As far as I can gather almost all of the company's products contain Ambrotose, which in turn contains Manapol. An earlier key ingredient was Acemanan. Then there's Ambroglycin.

I do not mean to disparage or diminish the totally respectable field of glycobiology or the potential use of polysaccharides in cancer. There is for instance the work of Prof. Hans-Joachim Gabius of the Ludwigs-Maximilians University of Munich and his coworkers. They have done pioneering research in glycobiology, investigating cell-agglutinating proteins known as lectins and the role they play in tumor formation.

Another very important area in glycobiology concerns the investigation of polysaccharides in mushrooms such as maitake, shiitake and reishi. This kind of research deserves the most serious consideration. So too do the lipopolysaccharides (LPS) that are associated with the cancer treatment known as Coley's toxins (mixed bacterial vaccine). But this is a very far cry from the claims sometimes made by proponents of Mannatech's products concerning the efficacy of orally administered sugars, such as are found in Ambrotose or related products.

A Promising Avenue

Glycobiology is a promising avenue of research, to be sure. However, network marketing creates a rah-rah atmosphere, in which a chemical becomes a product and a product then becomes a profit center…and an ideological cause.

There have been reports in the media that glyconutrients have been sold with an implicit claim that they have benefit in the management of existing cancers. What is the scientific basis of such claims? I experienced a disconnect when I tried to track down the hard science behind such claims. Here for instance are the numbers of Google search engine 'hits' for various Mannatech products or their components compared to the number of citations in the standard 15-million entry US medical database, PubMed.
*PubMed + Cancer refers to peer-reviewed article delimited by the further search term 'cancer'

For Ambrotose in particular, we see an enormous popularity in publications by and for lay people but nothing listed in the standard medical literature to substantiate claims of health benefits, at least not under this particular brand name. To put it mildly, this isn't very reassuring.

I also searched for arabinogalactan, a prime ingredient in Ambrotose. This is a sugar derived from the wood of the Larix, or larch, tree. Larch arabinogalactan is in fact approved by the Food and Drug Administration (FDA) as a source of dietary fiber. I had more success with this search. There were nearly 600 references to this topic in PubMed. But when I limited my search to articles investigating arabinogalactan in relation to cancer, there were only 17, mostly cell line studies.

According to PDRhealth.com, arabinogalactans mainly occur in the Western larch. It is not one substance but in fact a mixture of several different arabinogalactans with widely varying molecular weights. Arabinogalactans are water-soluble polysaccharides widely found in plants, fungi and bacteria. They may be involved in intercellular signal transduction pathways in plants.
Dietary sources of arabinogalactans are found in carrots, radishes, tomatoes, pears and wheat, among other plant foods. So whether we realized it or not, we all probably had some today. Gum arabic, a commonly used food additive, is also composed of highly branched arabinogalactans (from which the substance derives its name). Arabinogalactans are also found in herbs such as Echinacea and edible mushrooms such as Ganoderma lucidum (reishi) and may contribute to their possible immune-enhancing ability. But does this mean that Mannatech's products, taken orally, would be good for cancer patients?

I can find no hard evidence for this at all. While there is some indication that products derived from aloe, polysaccharides in particular, may possibly have a role in cancer treatment, the substantiation of such an effect is weak at best, and I can find no evidence whatever in standard sources that would point to the superiority of Mannatech's products. What's more, they seem quite expensive compared to other sources of monosaccharide sugars, such as generic aloe or plant gums.

According to a press release from a non-profit trade organization, the International Aloe Science Council, Inc.:
To assert, as several writers have done - seemingly with information obtained from the developers of Manapol™ - that aloe-based products not containing Manapol cannot offer the benefits associated with aloe vera - seems little more than product ballyhoo...

The main danger I believe is that patients will not only lose money but will also lose precious time. Cancer is a complex disease. It requires professional help. Regardless of the sometimes uncaring attitude of certain errant members of the medical profession, one should not reject everything that conventional medicine has to offer in favor of a regimen discovered on the Internet.

The answer is not simply to construct a do-it-yourself program, but to find expert and sympathetic guidance in the rapidly expanding realm of complementary oncology.

posted in LUPUS LUPUS - 0 replies

Glyconutrients

sinaguavalleyranch — Thu, 14 Jul 2005 01:48:28 GMT

Thank you Brenda, for the following information...

=========

Lupus is an autoimmune connective tissue disease, a type of self-allergy, in which the patient's immune system creates antibodies which attack the person's own body tissues instead of protecting the body from bacteria and viruses. This disease afflicts primarily women and is characterized by extreme fatigue, joint pain, muscle aches, anemia, general malaise, arthritis, skin lesions and kidney disease. It can result in the destruction of vital organs. Lupus can mimic other diseases such as multiple sclerosis and rheumatoid arthritis, making it difficult to diagnose. Sometimes the nervous system is also affected and headaches, epilepsy and psychosis can occur.

Human and animal studies have indicated that glyconutrients help the immune system when it is overactive. When glyconutrients empower the immune system, it can more readily identify and destroy what doesn't belong in the body, reinforcing the body's identity and restoring health. For people with lupus, glyconutrients boost the rate, speed, magnitude and precision of macrophage function, boosting their ability to identify and destroy tumour cells, bacteria, fungi, parasites, and viruses. In general the eight essential glyconutrients support the body's ability to heal, repair, regenerate, regulate and protect.

For all people not just those with lupus, glyconutrients form the basic cellular language of all cells. Cells require adequate amounts of glyconutrients to allow cells to communicate 'correctly'. These nutrients are known to improve the immune system function, organ function and improve basic body physiology. If cells cannot communicate correctly they cannot function correctly or stay healthy. Glyconutrients for cell communication are pivotal no matter what other supplements you decide to take.

posted in LUPUS LUPUS - 0 replies

What is Lupus

sinaguavalleyranch — Thu, 19 May 2005 15:01:04 GMT

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys. The body's immune system normally makes proteins called antibodies to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues. The immune system then makes antibodies directed against "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes. The immune complexes build up in the tissues and can cause inflammation, injury to tissues, and pain.

For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems. More than 16,000 Americans develop lupus each year. It is estimated that 500,000 to 1.5 million Americans have been diagnosed with lupus

posted in LUPUS LUPUS - 0 replies

Celebrex, Bextra, Vioxx and Aleve Recall

sinaguavalleyranch — Tue, 17 May 2005 19:56:45 GMT

Recently, data from several clinical studies has raised concern regarding potential increased health risks associated with the use of prescription COX-2 selective, non-steroidal anti-inflammatory drugs (NSAID), such as Celebrex, Bextra, Vioxx and Aleve.

In late September, 2004, Merck & Co., Inc. announced a voluntary withdrawal of rofecoxib (Vioxx) from the U.S. and worldwide market due to safety concerns of an increased risk of cardiovascular events (including heart attack and stroke) in patients on rofecoxib. Rofecoxib is a prescription COX-2 selective, non-steroidal anti-inflammatory drug (NSAID).

Patients who are taking these drugs and have concerns about their risks for complications should consult with their physician.

According to a statement issued by the U.S. Food and Drug Administration, FDA is collecting and will be analyzing all available information from the most recent studies of Vioxx, Celebrex, Bextra, and naproxen, and other data for COX-2 selective and nonselective NSAID products to determine whether additional regulatory action is needed.

An advisory committee meeting is planned for February 2005, which will provide for a full public discussion of these issues. In the meantime, the FDA has issued a public health advisory regarding these medicines.

Additional information is available from the following website:

http://www.fda.gov/bbs/topics/ANSWERS/2004/ANS01336.html

http://www.rheumatology.org/press/2004/cox_2_news.asp

http://www.rheumatology.org/publications/hotline/0904chfvioxx.asp

http://www.fda.gov/medwatch/SAFETY/2004/safety04.htm#vioxx

http://www.fda.gov/cder/drug/infopage/vioxx/PHA_vioxx.htm

http://www.fda.gov/bbs/topics/news/2004/NEW01122.html

http://www.fda.gov/cder/drug/infopage/vioxx/vioxxQA.htm

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