 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Lupus / March 2004Vitamins, Minerals, Herbs, Supplements, EFA's
Hi, Does anyone have any opinion's or advice on which supplements to use and which to avoid for lupus. Thanks in advance. Rich I learned that if you are on long-term pred. Calcium supplement is highly recommended! > Hi, > Does anyone have any opinion's or advice on which supplements to use > and which to avoid for lupus. Thanks in advance. > Rich Hi Rich, What's an EFA? I don't remember you posting here before. Do you or a loved one, have Lupus? There's a section in the revised FAQ which discusses herbs and/or supplements,. http://www.ghg.net/schwerpt/ASLFAQ/triggers.htm In general avoid supplements that are made with alfalfa sprouts as a base. In small doses, such as on the occasional sandwich, sprouts are generally harmless. In the concentrated form found in many supplements they can increase inflammation in some patients. [See The Lupus Book Second Ed. pg. 179] Alfalfa sprouts are a legume and all legumes contain the same chemical (L-canavanine) that causes this inflammation but alfalfa contains this chemical in a higher concentration. Normal ingestion of legumes should not be of concern to most patients. Noni Juice is a popular "cure all" being marketed aggressively in some areas. While there is little clinical evidence supporting or disproving the usefulness of this product, there is a general warning that should be heeded. Noni Juice is high in potassium and this can be problematic for individuals with kidney or heart disease. The LFA recommends not using this supplement if you have a condition that could be aggravated by large doses of potassium Drugs that claim to stimulate or modulate the immune system can be harmful. In general, Lupus treatment focuses on reducing the activity of the immune system. Most alternative drugs that claim to modulate the immune system are not understood well enough to know if they will be harmful or helpful. Again, always discuss your medications with your doctor. It is wise to add or subtract only one medication at a time (traditional OR alternative.) This will allow you to more accurately gauge the drugs efficacy or lack thereof. From another web page because I can't remember where herbs and other stuff are in the FAQ.. The herb Echinacea is widely used because of its ability to support the immune system in fighting off colds & flu. But it enhances the immune system by increasing white blood cell production, so it is best avoided by lupus patients. Some herbal preparations have been found to contain sulfa, steroids or other pharmaceutical drugs, so always consult your doctor regarding the safety of any over the counter products. J >From another web page because I can't remember where herbs and other >stuff are in the FAQ.. [quoted text clipped - 6 lines] >safety of any over the counter products. >J looks like something I probably need to add... i don't remember tackling the herbal issue too deeply and tried to be general about "alternative" medicine in the section you quoted. But this little extra is useful to have in there. i've printed out what you sent yesterday and hope to find the energy today to work on it. hard going though - it's 12:15 and I've only been up since 11:45. this is one nasty bug we've got here. hubby's been sick for 15 days now. I've been sick for 8 days. > >From another web page because I can't remember where herbs and other > >stuff are in the FAQ.. [quoted text clipped - 11 lines] > "alternative" medicine in the section you quoted. But this little > extra is useful to have in there. Hi KC, there's got to be (IS) more there somewhere, because yesterday I was reading about licorice (but now I can't find it). In fact, I distinctly remember reading about "boosting the immune system" on your web page. I just can't find it at the mo. > i've printed out what you sent yesterday and hope to find the energy > today to work on it. hard going though - it's 12:15 and I've only > been up since 11:45. this is one nasty bug we've got here. hubby's > been sick for 15 days now. I've been sick for 8 days. Sorry, luv, hope you and hubby feel better soon. Flu: rest and fluids. take it easy. Hugs J >Hi KC, there's got to be (IS) more there somewhere, because yesterday I was >reading about licorice (but now I can't find it). In fact, I distinctly >remember reading about "boosting the immune system" on your web page. I just >can't find it at the mo. well - mind like a steel seive here so what you say sounds right. still - it seems it should be easier to find since it is a very commonly asked question/ >Sorry, luv, hope you and hubby feel better soon. >Flu: rest and fluids. take it easy. >Hugs >J me to - going back to bed. Dog has been so good during all this. just hangs in close to me. except of course when dinner time rolls around which she thinks is 4 p.m. but it's actually 6 p.m. ugh... back to bed. thanks for your help. k [ >this is one nasty bug we've got here. hubby's >been sick for 15 days now. I've been sick for 8 days. Never mind all that, how's the dog?  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! >[ >>this is one nasty bug we've got here. hubby's >>been sick for 15 days now. I've been sick for 8 days. > >Never mind all that, how's the dog? patient - veeery patient. sits by the bed a lot waiting for mommy to get well. or goes to her "bed" (the couch) and stays there. sleeps about 20 hours a day now and limps constantly. :( OTOH - mommy tried to talk to her this a.m. and out came a strange croaking sound so I think she thinks I' m channeling Lauren Bacall. which would be interesting considering Bacall is still alive. Hi J, Thanks for all your information and links to the website, they are helpful. EFA's are essential fatty acids, like Omega 3 which can be derived from flaxseed oil. You're right, I haven't posted here before. I'm 50 year old male and I think I've been living with SLE for 30 years, undiagnosed. I'm waiting to see my primary doctor for a refferal to a Rheumatologist to see what they can test for. I won't go into all the health woes I've been through until I get a proper diagnosis..if thats possible. Thanks again. Richard BTW, I've been taking 50 to 60 supplemental anti-oxidants etc, a day for over a year and they have definately helped me. Richard, 50-60? Wow! I'm interested in what you're taking. One of my drs has a website and he has written brochures re: various subjects... www.drworkmd.com under brochures. I use the Trans D Tropin (human growth hormone releasing hormone). He also mentions some other supplements (like the CNCR Protocol 2 that I use) Good luck Nicole Signature3 of every 10 Americans Know Someone With Lupus Help find the cure. www.lupus.org > Hi J, > Thanks for all your information and links to the website, they are [quoted text clipped - 9 lines] > BTW, I've been taking 50 to 60 supplemental anti-oxidants etc, a day > for over a year and they have definately helped me. Hi Nicole, About 2 years ago I thought I primarily had a skin condition problem and I saw Dr. Perricone, a dermatologist on PBS and he sounded like he had some real good ideas for skin treatments. I bought his book "The Wrinkle Cure" and his newer follow up book "The Pericone Prescription" and I started using every supplement pill and oil he recommended in the books. I had good positive results so I expanded my library with many other anti-oxidant books and my added many new supplements to my daily doses. I have 39 empty bottles, 3 for each day..so I have 13 days worth of bottles. I put the morning, noon and evening supplement doses in each bottle and I'm good for 13 days. This is the best way I have found to dispense the pills. I would really have a prblem opening a dozens of pill bottles a day. I'm not going to try to list all the pills I take right now because Im always changing and adjusting them, but I'll list some. Alpha Lipoic Acid, at least 50 mg twice a day, maybe my best pill. Centrum Multi Vitamin, 1 a day Vitamin B Complex, 1 a day Vitamin C ester, 500 mg. 1 a day Vitamin Ester C with bioflavinoids, 3 a day Vitamin E, d-Alpha, 400 IU Gamma, Beta, Delta Tocopherols, 1 a day Vitamin E, tocotrienols, 35 IU tocotrienols, 100 IU same as listed above, 1 a day Vitamin E, Succinate 400 IU, 1 a day Calcium Citrate 333 mg, 3 times a day Magnesium, as oxide, aspartate, citrate 189 mg, 3 times a day Magnesium Glycinate 400 mg, 1 a day Vitamin D, 204 IU, 3 times a day Coenzyme Q10, 60 mg, 1 a day Selenium, as Methlyselenocysteine 200 mcg, 1 a day Tumeric extract, 400 mg, 1 a day Grapeseed extract 150 mg, 1 a day Pycogenol, 50 mg, 1 a day Red Clover 430 mg, 1 a day L-Glutamine amino acid, 500 mg, 2 a day L-Carnitine amino acid, 500 mg, 1 a day Acetyl L-Carnitine amino acid, 500 mg, 2 a day Ginkoba Ginko biloba extract, 120 mg, 3 a day Ginger Root, 550 mg, 3 a day Garlic, deodorized, 500 mg, 3 a day Probiotic, Primal Defense, 1 a day Flaxseed oil mix, Udo's Choice, 1 tablespoon, 2 a day Fish Oil, omega 3, 500 mg, 4 a day I use over a dozen other things off and on and make changes here and there. I'm also just starting to monitor my urine acidity to see what I can do to reduce my body's acid level. Here is a web link on the subject: http://www.rawhealth.net/bodyph.htm And this is the meter I'm using: http://www.telatemp.com/PhInd/WtrpH.htm Cheers, Richard > Richard, > 50-60? Wow! I'm interested in what you're taking. [quoted text clipped - 6 lines] > Good luck > Nicole > Hi J, > Thanks for all your information and links to the website, they are [quoted text clipped - 5 lines] > into all the health woes I've been through until I get a proper > diagnosis..if thats possible. Do Please, I like to compare to my brother's...he's been undiagnosed for years. He'll be 53 this year and there may be other males reading who'd be interested also. PS I don't know if anything you are taking might blur the diagnostics in some way. J Hi J, I've spent years trying to pin the tail on the donkey and figure out what's really going on. Just recently I was directed to see a rheumatologist by a ear doctor on alt.support.tinnitus. After studying what diseases they treat I started researching lupus and it is the one and only disease that explains virtually all my health problems. I don't want to prematurely announce I have it until I get a verified diagnosis. But to satisfy your curiosity a bit here's a few aliments. Severe skin damage from ultraviolet sun exposure, you can see some of it in these pics..I was treating it with Efudex cream at the time: http://photos.yahoo.com/swinky00 Severe inflammation lip damage, some of exposed in the previous photos but I have other much more graphic photos. Very significant hearing loss in both ears with narrowing of middle ear canals, previous chronic ear infections. Variable tinnitus (ringing in the ears, both ears) to a level exceeding suicidal. Hospitalized for psychotic episodes 6 times in 28 years. Spasmodic torticolls of the neck for over 20 years. This is where the head is pulled to one side by permanently contracted neck muscles. Head and Hand tremors. One seziure episode Retired on disabilty from the US Government with almost 15 years service. Thats most of it, and if and when I get a diagnosis I'm thinking of writing a book about the medical profession titled, "Mis-Diagnosed" Cheers, Rich Do Please, I like to compare to my brother's...he's been undiagnosed for > years. > He'll be 53 this year [quoted text clipped - 3 lines] > some way. > J > Hi J, > I've spent years trying to pin the tail on the donkey and figure out [quoted text clipped - 33 lines] > Cheers, > Rich Hi Rich, I had a look at the pictures. I don't get out much but last time I saw skin that bad was on me approx 1960. I was trying to tan my legs and tummy with an ultraviolet lamp and kept falling asleep and staying beyond the 5-minutes my mother warned me to. Mine healed up good fortunately because I only made that goof once per summer, two years in a row, then quit using the lamp. When and where and how did you manage to get such severe UV exposures? on the water? peak sun hours? Nothing similar to my brother (but he's not diagnosed either), but I do hope you are being followed closely by a dermatologist for some very obvious reasons. J Hi J, The skin damage shown in the photos is visible because I was using a cream named Efudex that conatins an anti-cancer ingredient, 5-FU, to treat pre-cancerous skin lesions called actinic keratosis. Oringinally I was being treated for some very stubborn spots on my scalp that were biopsied to be actinic keratoses, caused by years of UV sun exposure. I was never a big sun worshipper and worked indoors mostly but I still had the damage. The lesions were not responding to liquid nitrogen cryotheraphy very well so the doctor prescribed Efudex to use on my scalp lesions. Well, I had some light brown spots on my forehead and used some of the cream there too, before long I was using in in other areas because I thought I was killing pre-cancerous mutated skin cells. The Efudex cream only reacted in areas where I had obvious sun exposure. Before using the Efudex I had no clue that my skin was so messed up, except for my upper chest which had a pinkish color and all my chest hair in that area was pure white. Since I have killed off some of the skin damage and started using all my anti-oxidants the skin is less pink and the hair is more brown. Looking at my face now you can't see the damaged areas, they have healed completely, except for a pink area around my mouth which I treated again on another occasion with a different drug, Solaraze..a NSAID, in gel form. I just learned today from my primary physician that I tested negative for the ANA antibody on a blood test 5 years ago. I hope when I see the rheumatologist they have more sophisticated methods of drawing a conclusion if a person has lupus or not. About the only thing I'm sure of is my problem is systemic and it has a inflammatory component and it has inflitratied my central nervous system and greatly affected my ears, lips and sun exposed areas of my face, neck and upper chest. Thats about all I can say for now, thanks for your concerns. Cheers, Rich > Hi Rich, I had a look at the pictures. I don't get out much but last time I > saw skin that bad was on me approx 1960. [quoted text clipped - 10 lines] > reasons. > J [ > I just learned today from my primary physician that I tested negative >for the ANA antibody on a blood test 5 years ago. I hope when I see >the rheumatologist they have more sophisticated methods of drawing a >conclusion if a person has lupus or not. They do - see for example http://www.northeastlupus.org.uk/katfaq\diag.htm Also, I think that treatments can make a positive ANA into a negative one - hence the need for other tests. And the realisation by the doctors that other tests exist and might be necessary :( SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > except > for a pink area around my mouth which I treated again on another [quoted text clipped - 7 lines] > system and greatly affected my ears, lips and sun exposed areas of my > face, neck and upper chest. Well, good luck with that. Maybe a rheumy can convince you to see a dermy. especially since you've continued to have UV exposures at work. Oh and do make up a list of signs and symptoms for the rheumy and take your bloodwork (over the years) with you. Best, J I was seeing a dermatologist along with my primary care physician. I stopped seeing the dermatologist when I failed to receive answers to my questions, particular the 'what do I have question'. I was also unimpressed with 'come back and see me in 3 months' routine. The person who has helped me the most with all my medical problems is me. I also don't expose myself to UV at work, I even have a sun meter that measures the UV intensity when I'm outside and I use a sun blocking umbrella when I walk iin the summer sun. I don't have my bloodwork results, if the rheumatologist wants them he can request them from my primary care physician. Thanks for the tip about the symptom list..I may have to refer him to varoius other specialist to get that too. Cheers, Rich > Well, good luck with that. Maybe a rheumy can convince you to see a dermy. > especially since you've continued to have UV exposures at work. > Oh and do make up a list of signs and symptoms for the rheumy and take your > bloodwork (over the years) with you. > Best, > J > I was seeing a dermatologist along with my primary care physician. I > stopped seeing the dermatologist when I failed to receive answers to [quoted text clipped - 10 lines] > Cheers, > Rich Well Efudex boosts the immune system http://www.catie.ca/tu.nsf/0/8960e11b8c6dbea585256e2f0070ef6f?OpenDocument which is contraindicated in Lupus and there's skin and systemic lupus. I don't know if the bloodwork proves dermatologic Lupus (or not). I believe a dermatologist biopsies for that. (if suspected when there's a sore or lesion or ulceration). Another one to read http://shop.store.yahoo.com/skindoctor/ac.html Treatment in Fall and Spring and mention of "lip" reaction. Also Efudex has a warning on it about persons who have a ""dihydropyrimidine dehydrogenase (DPD) deficiency" which can cause severe neurological problems (but I'm unsure if that's the oral and cream of 5-FU) called "multifocal inflammatory leukoencephalopathy " http://www.telemedicine.org/carcinog/carcinog.htm I'd be interested in knowing your signs and symptoms and family history, since another sun-sensitive illness are the porphyrias. J Hi J, I read your 3 links and I don't see anything that says Efudex is an immune system booster. If you consider that it is slowing killing off mutated skin tissue and improving reducing the amount of diseased tissue then you could look at it as an immune enhancer from that perspective. I have not read anything in the paper work that it comes with nor the drug books that says Efudex is an immune system booster. What happened with me is I was treating a large area of reddened, white haired skin on my upper chest, as shown in the photos. Then one night a reaction occured, starting at the bas of my spine..I had a slow creeping full body chemo-teraphy treatment that swept like a very slow wave thru my whole body. Apparently, my body stored up enough of the 5-FU from the Efudex to produce this effect. When the 'wave' hit my lips they felt like a flower unfolding, like I had knots in my lips that I was unaware of that were being untied. The whole sensation was relatively painless but scary..not knowing how different parts of my body would react. The next morning I could see my lips..particularly the sides..had 'exploded', as seen in the photos. Thats when the burning and pain set in and I won't go into that now. I'm going to wait until I see a rheumatologist before I start tossing out possible lupus realted sysmptoms and family histories. STill waiting for a date. Cheers, Rich > Well Efudex boosts the immune system > http://www.catie.ca/tu.nsf/0/8960e11b8c6dbea585256e2f0070ef6f?OpenDocument [quoted text clipped - 16 lines] > another sun-sensitive illness are the porphyrias. > J > Hi J, > I read your 3 links and I don't see anything that says Efudex is an > immune system booster. Sorry for my errror. J Dr Andrew Weil has some great advice. http://www.drweil.com/app/cda/drw_cda.html magnesium w/chelated zinc 300mg vit e 800 iu vit c 1000mg fish oil 1000 mgs multi vitamin vit b complex 100 mg iron, carbonyl 100mg calcium 1200 mg trans d tropin (hgh releasing hormone) CNCR Protocol 2 (dried mushroom blends) evening primrose 1000mg melatonin 9 mg passionflower chamomile Hope this makes sense and helps Nicole Signature3 of every 10 Americans Know Someone With Lupus Help find the cure. www.lupus.org > Hi, > Does anyone have any opinion's or advice on which supplements to use > and which to avoid for lupus. Thanks in advance. > Rich Hi Nicole, Thanks for the list, I can't find it at the website you referenced. Can you tell me it came from and if it is a lupus specific list. Thank you. Also, flaxseed oil appears to contain ingredients that antagonize the activity of platelet-activating factor that plays a role in SLE kidney disease, preliminary evidence suggests flaxseed might help prevent ot treat lupus nephritis (source: Natural Health Bible, 2nd edition, pg.114) Fish oil is an excellent anti-inflammatory but doesn't have the proerties of flaxseed in regard to SLE kidney disease. Cheers, Rich > Dr Andrew Weil has some great advice. > [quoted text clipped - 22 lines] > > and which to avoid for lupus. Thanks in advance. > > Rich Richard, That list was what I take. Dr Weil has his own suggestions. Sorry for the confusion. Nicole Signature3 of every 10 Americans Know Someone With Lupus Help find the cure. www.lupus.org > Hi Nicole, > Thanks for the list, I can't find it at the website you referenced. [quoted text clipped - 35 lines] > > > and which to avoid for lupus. Thanks in advance. > > > Rich With the wacky system of a lupie it is tough to nail down - this is one best explored with a Naturopath or someone knowledgeable (very)... I have had success this past year with additions of supplements, but have also had failures and bad reactions - everything from one comibnation to another - some work and some don't.... it has been an effort, but worth it Leslie > Hi, > Does anyone have any opinion's or advice on which supplements to use > and which to avoid for lupus. Thanks in advance. > Rich I have been taking Vitamin B complex and Oscal, as well as Folate (because of all the medications I am on the doctor's are worried of accidental pregnancy -- taking 800micrograms of Folate a day evidently decreases the chance of birth defects -- not that you need to worry about that Richard!). I feel like the B Complex has helped my energy -- but who knows because I am on a lot of other stuff. I have also tried Primrose Oil and Flax Seed Oil for inflamation but I did not see much change on it. However, I have not been diagnosed with Lupus -- originally, the docs were going that route but my bloodwork has not added up. So I have a polyarthritis, fibro, autoimmune disease ish thing that they don't have a title for but that continues to reak havoc on my body. So, take my herbal/vitamin experiences with that in mind. If you find any good combinations that work let us know! Stephanie > With the wacky system of a lupie it is tough to nail down - this is one best > explored with a Naturopath or someone knowledgeable (very)... I have had [quoted text clipped - 7 lines] > > and which to avoid for lupus. Thanks in advance. > > Rich Question: If the drs are worried about accidental pregnancy, why not use some form of birth control that is highly effective and easy to use? Just curious... I would be terrified to get pregnant w/all the meds I take. I have an IUD and I love it. I'm also going to start the Nuva Ring to skip my menstrual cycle since it causes me to flare every month. Nicole Signature3 of every 10 Americans Know Someone With Lupus Help find the cure. www.lupus.org > I have been taking Vitamin B complex and Oscal, as well as Folate (because > of all the medications I am on the doctor's are worried of accidental [quoted text clipped - 25 lines] > > > and which to avoid for lupus. Thanks in advance. > > > Rich I do take birth control pills and am pretty good about not missing a day. My one doc is very cautious about everything and in that one percent chance that the pill doesn't work, he wants us to be covered. I guess I appreciate his vigilence -- you never know. Is the IUD more effective than the pill? Thanks! Stephanie > Question: If the drs are worried about accidental pregnancy, why not use > some form of birth control that is highly effective and easy to use? [quoted text clipped - 38 lines] > > > > and which to avoid for lupus. Thanks in advance. > > > > Rich The IUD is 99% and I think the pill is 98-99% when taken correctly. Signature3 of every 10 Americans Know Someone With Lupus Help find the cure. www.lupus.org > I do take birth control pills and am pretty good about not missing a day. My > one doc is very cautious about everything and in that one percent chance [quoted text clipped - 58 lines] > > > > > and which to avoid for lupus. Thanks in advance. > > > > > Rich Hi Rich, I have not been reading or posting much lately. Forgive me for being so slow in welcoming you. I see that J has been most helpful, as always. Please feel free to ask questions or just talk to us whenever you wish. I look forward to getting to know you better. BJ-Sk. Canada > Hi, > Does anyone have any opinion's or advice on which supplements to use > and which to avoid for lupus. Thanks in advance. > Rich Hi When all my symptoms began many years ago, I started becoming allergic to almost everything. I had a very hard time with the pill, so I thought I would try a diaphram. I discovered the hard way that I had become allergic to latex. I couldn't get the diaphram out for 3 days, it had melded with my skin. Sometimes birth control is difficult with autoimmune problems, that is what allergies are, immune problems. I don't know about most of you, but I tryed for many years to take supplements and herbal remedies, and ended up naseus all the time. I think like in all things, something works for some but nothing works for all. Terrice Hi Terrice, I just wanted to say I'm not a believer in the 'magic herb' solution to health improvement. I am a 100% believer in the benefical chemical effect of anti-oxidants. In the past I have bought and taken some pretty souped up vitamin mixes, good quality ones. I did feel better and I'm sure they were good for me. But it wasn't until I started taking the types of pills and doses given in the book, "The Periconne Prescription" did I really start to experience obvious positive improvements. Which led me into other books and other anti-oxidants and anti-oxidant type pills. The anti-oxidants help neutralize body inflammation, and lupus uses inflammation to degrade body tissue, so it makes sense they will counteract lupus tissue attack without the prescription drug side affects. Cheers, Rich > Hi > [quoted text clipped - 10 lines] > > Terrice |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.