Think Im fighting a virus...anyways, was reading about Elderberry and goldenseal and happen to come across a few
web articles that say these are not indicated for those with autoimmune..those taking steriods especially, etc. I went to health
food store, and none of these have this printed on their labels. Before taking any supplement, I would suggest doing some web research first.
Ive taken a bit of goldenseal before, and did notice I did not feel good at all the next day? uhmmmm. Ive known for years about Echinecea, but didnt realize you really have to do your homework on this stuff.
I also have lupus, and do take alot of steriods (20mg), but I will be more cautious. Dr. Oz has me concerned about his promotion of sooooo
many supplements. Many of these have side effects and interactions and people just keeping using them all...scary!!!
Just an FYI
Gursie
I agree with you gurs. I was told years ago by my rhuemy not to take Echinecea.
We do need to inform ourselves of these products.
susanep :)
Like any drug you take you should also research Counter Indications, Interactions and Side Effects. I do this search with every medication, herb, and supplement that I take. Often there is a difference between taking an herb as a capsule or as tea and its effectiveness.
DRUG INTERACTION CHECKER
Enter any list of prescription drugs, over-the-counter drugs, herbals and supplements to see how they interact with each other and with other substances.
http://healthtools.aarp.org/drug-interactions
*site has other checkers ex. generic cost saver, etc.
I noticed with some meds the info said not to eat grapefruit. I asked hubby, he explained it can make a drug last longer. (More involved than that) Hmmm...I love ruby red grapefruit.
People with autoimmune disease should avoid any supplement that stimulates the immune system - echinacea, garlic, goldenseal, Chinese mushrooms, astrugalis, etc....our immune systems are already too active.
If you Google "immune stimulants sjogrens" or "immune stimulants lupus" there is some good info out there from Johns Hopkins, etc.
I DO use elderberry, but I only use it as a gargle when I have a virus that settles in my throat (strep, etc). It is a pretty good anti-viral, so I use it to kill surface colonies in my throat. Otherwise, I avoid any immune stimulants - sad, because I LOVE mushrooms and garlic!
I didnt know that about garlic? cheez..we cant win!!!! looking for a good anti-viral, bacterial, that is natural?
I havent had a virus in along time...cant believe how much mucous I have in my chest..at least Im breaking it up. Alot of the cold/flu
stuff I cant tolerate either. My throat hurts and my esophagus too...just burns...no fevers though. Think its just a virus. Everyone
I saw has been coughing and sneezing etc...this weather change really set me off...
Gursie
I do use a mushroom blend supplement that my doctors have suggested and I've had no problems with it.
I was told NO echinacea & goldenseal.
I think it is akso important to check when we take our meds & vitamins because many should not be taken at same time!
Echinacea is contraindicated for people with grass allergies, and has no effect on a cold. So that would be a NO for me. I am very careful about adding new things to my intake. I take Biotin and Folic Acid, Vit D, C, DHA and fish oil, CoQ10 and a B complex every day. All of them recommended by my rheumy.
I also take coconut oil. It helps with dryness, and also helps with the absorbtion of fat-soluble supplements. I feel like I have more energy when I take it, and that is a plus!
thanks for this post... it is a great reminder... cause most people i know try to "help" me by suggesting things such as from Dr. Oz that will boost my immune system.. they think it will help my immune system get stronger..they dont get that boosting an overactive immune stystem will make it worse...
this is a great reminder..
Thanks for reminding me - after a horrible day after trying out a new herbal sleep aid. Bad idea... When will I learn!
Meow...Be sure you buy organic coconut oil.
Oooh yeah - melatonin is also on the list of stuff you should avoid if you have autoimmune disease - though I have heard form some folks who use it in low doses and don't seem to have too many problems (but maybe they would feel even better without it? I dunno...everybody is different!).
Google "melatonin autoimmune".
We also should not have anything with alfalfa in it - sprouts, etc - and lots of vitamins and/or "green" drinks/"superfoods" have alfalfa extracts in them.
*sigh...*
I have also been told by my doc to try to stay away from wheat, soy, cow dairy, beef, and much alcohol. Neuro warned me off aged cheeses, red wine, smoked fish in order to prevent migraines.
Most meals now, I just drink water and lick an empty plate.... ::) :P
Quote from: Sleepy In Seattle on January 14, 2013, 05:54:40 PM
Oooh yeah - melatonin is also on the list of stuff you should avoid if you have autoimmune disease - though I have heard form some folks who use it in low doses and don't seem to have too many problems (but maybe they would feel even better without it? I dunno...everybody is different!).
Google "melatonin autoimmune".
We also should not have anything with alfalfa in it - sprouts, etc - and lots of vitamins and/or "green" drinks/"superfoods" have alfalfa extracts in them.
*sigh...*
I have also been told by my doc to try to stay away from wheat, soy, cow dairy, beef, and much alcohol. Neuro warned me off aged cheeses, red wine, smoked fish in order to prevent migraines.
Most meals now, I just drink water and lick an empty plate.... ::) :P
:-D Know the feeling. I also have PCOS so I am supposed to be eating low glycemic... And anti-inflammatory....? Empty plate will do.
Think we are stuck...cant take normal cold/allergy med's because of the dryness etc..now, my virus worse today..coughing, sneezing..
cant take anything? was reading about so many natural cold remedies and seems we cant take them either?
Guess Ive been pretty lucky last few years though, havent had a cold in along time. I forgot just how fun they can be (ha ha)
especially with the added dryness..oh well...now Im wondering when to have my rituxan. Im supposed to have it on the 27th of this month, but
may have to push it out a few more weeks to see If i can get rid of this virus?
Gursie
Camomille tea? Is that ok?
Essential oils is an option. Many of the high quality oils help inflammation, fight viruses, bacteria, etc.
Quote from: jazzlover on January 15, 2013, 10:53:12 AM
Essential oils is an option. Many of the high quality oils help inflammation, fight viruses, bacteria, etc.
They can have the same side effects and be highly toxic and cause allergic reactions also. Be very careful with those.
Curious about chamomile tea? Is it ok for autoimmune folks or not?
Do any of you have a good website that just lists what is good and not good for us? I guess I mean a list of do and donts. I love to grow herbs so I have tried different things. I did not know about echincha. Used that for years as a tea. My rheumy has started me out on different things so I feel OK with them. But like someone said on here people are always asking if I have tried this or that. The Biggie is "I seen this on Dr. Oz you should try it". ;D I am with you on just licking the plate, most things I cant taste anyway it is all about the texture for me. Like can I get this swallowed!! :-\
Quote from: gurs on January 14, 2013, 05:02:48 AM
I also have lupus, and do take alot of steriods (20mg),
Offtopic: I know you may have no choice, but do you have any alternatives? Are you using a DMARD? 20mg over the long term is a little scary...
Styx
Well its official.....have the flu..just got home from the hospital.
I dont care....going to try taking the elderberry..guess I will up my steriod use?..not taking the tamiflu...scared to death of any prescriptions...
Gursie
Quote from: gurs on January 16, 2013, 01:18:45 PM
Well its official.....have the flu..just got home from the hospital.
I dont care....going to try taking the elderberry..guess I will up my steriod use?..not taking the tamiflu...scared to death of any prescriptions...
Gursie
But why take anything if you don't mind me asking? It's the flu - you can't do anything other than sit it out. Painkillers, hot tea and home to bed. It's a virus, I would never take anything for a virus.
Tamiflu is an antiviral medication that is used to treat flu symptoms or used to prevent flu in exposed individuals that do not yet have the flu. It helps reduce symptoms and duration of infection. Saves you about 1-2 days of misery.
I may not take anything...but, from my immune system issues added to this (low t-cells, Immune def disorders) this could linger along time and possibly add another flu to it..thank god I dont have the stomach one etc.
I may just try a super low dose. I know it comes in a liquid, so I can just take a few drops or two? who knows..after not sleeping the last few days, Not thinking clear.. ha ha
Gursie
Some natural anti virals are coconut oil, colidal silver, olive leaf and cilantro. Vit C and zinc too! I may have already posted this haha brain fog! Oh and RAW honey!
I have the flu too but not nearly as bad as my husband. I think bc I take all of the above plus I put peroxide in my ear when I feel something coming on. Also I try "oil pulling" a few times a day. It's definitely doing something!
Feel better!
Brooklyntina What is "oil pulling?"
Duchess
is there a list somewhere, I think we should compile a list so we can print it out put it on the fridge, medicine cabinet wherever. I read about things like this thread and other threads but the chances of me remembering everything plus I know I don't know them all are slim to SO not gonna happen. If one of you has even a partial list I'd really appreciate it. I to had herbal tea last night n this morning thinking it would make me feel better during this flare grrrrrrrrrrrr
XOXO
Ldy
I agree with LdyMntneer~ I need a list. My computer is about 10 feet from the kitchen but i forget what I am getting by the time I get there. A List would be great..... Herbal tea.....Check, Honey Check.... ;D
I don't follow any of this perfectly, but have found the information in these websites to be mostly true for me. In the end, you have to judge for yourself - everyone's body is slightly different. Your body will tell you when something doesn't feel good...you can become better and better at listening to it.
http://thyroidbook.com/blog/autoimmune-gut-repair-diet/
http://memorable-meals.blogspot.com/2011/01/foods-to-avoid-on-autoimmune-focused.html
The following two websites/lists refer specifically to Lupus, but also apply to Sjogrens since there is such a close overlap of the processes and symptoms of the two diseases - and these lists come from extremely reputable sources:
http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
http://www.lupus.org/webmodules/webarticlesnet/templates/new_research.aspx?articleid=2281&zoneid=3
I hope those help!
Sleepy in Seattle ~ thanks for the website~ very interesting!!! :)
Oil pulling (from Wikipedia). One side note is that my doctor has me using coconut oil bc it's antibacterial.
Oil pulling or oil swishing is a traditional Indian folk remedy that involves swishing oil in the mouth. It is mentioned in the Ayurvedic text Charaka Samhita, where it is called Kavala Gandoosha or Kavala Graha. Ayurvedic literature describes oil pulling as capable of both improving oral health and treating systemic diseases such as diabetes mellitus or asthma.[1] While scientific evidence is lacking to support any systemic benefits of oil pulling, some studies have suggested that it may reduce oral plaque, halitosis, and gingivitis.
Procedure
The practitioner rinses the mouth with approximately one tablespoon of oil (sesame and sunflower oils are the most recommended) for 15?20 minutes on an empty stomach (before eating/drinking) then spits it out.
Here's the National Institute of Health (NIH) link for supplement evaluations.
http://ods.od.nih.gov/Health_Information/IBIDS.aspx
Hugs
Elaine
is tumeric 500mg safe to take with sjogrens??? anybody know? thnaks!@
I was wondering about that oregano oil too? so much stuff? I think tumeric is ok. Everything in very small quantity. I never take the recommended doses on any of my supplements. Im very cautious of it all, and alot of them are drying without you knowing it. It can really aggravate the sjogrens. I couldnt believe how dry some of them made me. I could barely breathe.
Gursie
Thanks Brooklyntina that is very interesting.
Duchess
I took turmeric for 6 months, and saw no improvement in joint pain, so I quit. However, DHA is helping.