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Article about Supplements

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #14988 by eklein
Replied by eklein on topic Re: Article about Supplements
I wish there was an explanation of why each supplement was dangerous. I know for example that a few years ago there was some tainted kava and some people got sick or maybe even damaged. But would pure kava be labeled dangerous, or is that one because of the impurities? It's so overly simplistic to label a chemical - from a plant directly, or manufactured - as dangerous - it depends on the purity, the dosage, the medical state of the person taking it, what it interacts with - so many things.

Thanks for the link! A good reminder to be mindful of what we put in our bodies (as I snack on Peeps!)
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #14990 by Sandi
Replied by Sandi on topic Re: Article about Supplements
Yeah, I wish they would be more informational too. You have to end up looking everything up individually.

"Studies of kava kava supplements have linked use of kava kava with liver problems (Canada banned kava kava supplements based on this research). For this reason, kava kava supplements should be avoided by anyone with liver conditions, who takes medication that affects the liver or who drinks alcohol on a daily basis. Kava kava can also interact with antidepressants, so should be avoided by people receiving depression treatment."

Read more at Suite101: Natural Remedies for Anxiety: Kava Kava, Valerian and More | Suite101.com www.suite101.com/content/natural-remedies-for-anxiety--kava-kava-valerian-and-more-a223311#ixzz1LiD4vpUw

Do you think the average person knows this? Nah.
14 years 4 months ago #15068 by
Replied by on topic Re: Article about Supplements
That's an interesting site Sandi.
14 years 4 months ago #15080 by
Replied by on topic Re: Article about Supplements
The particular supplements they discussed intrigued me because in the circles I run in some are ones people tend to grow themselves vs. buying pre-capsuled. Chaparral, comfrey, country mallow, kava, lobelia are commonly grown among wildcrafters. Colloidal silver is not real difficult to make and people find it to be superior to most brands when they make it themselves.

I think they do this mostly because they are easy to grow, dry and encapsulate. I'm sure plenty of people buy them, I was just comparing to the ladies I tend to circle with. The kava kava is funny because people take that for depression usually because they don't want to take antidepressants. I've not personally met someone that's done both but that doesn't mean they don't. It'd be easy to look at a shelf of stuff and pick it up thinking it will help. Although I do have a bottle that says it can interfere with ADP's. So perhaps only certain brands don't post it on their labels? Supplements are one area where I do believe brand matters. There's a site I used that tested and rated a number of the brands and I found it helpful when I started using them. I'll see if I can find it. It's been a long time since I looked at it but it might be helpful to someone.
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14 years 4 months ago #15119 by specialk16
Replied by specialk16 on topic Re: Article about Supplements
Wow thanks for posting that... many of my friends have suggested supplements but I have been very nervous about trying anything. And even last week someone mentioned the Silver treatment... wow... I don't want to be Blue... LOL

Kasha
MCTD (Lupus/Raynauds), Sjogrens, ITP
Plaquenil 400 mgs
Prednisone 10 mgs
Imuran 50 mgs
Rituxan 2005 and 2008 (can't take anymore, body rejected it)
  • Sandi
  • Topic Author
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #15126 by Sandi
Replied by Sandi on topic Re: Article about Supplements
I don't want you to be blue either. You are beautiful just the way you are!

I've seen pictures of the people who were blue. The actually looked gray and it was creepy.

Here's one:

today.msnbc.msn.com/id/22536241/ns/today-today_people
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14 years 4 months ago #15138 by milly
Replied by milly on topic Re: Article about Supplements
Don't go blue. I checked the link that guy is spooky (poor fellow). I found the article to be pretty interesting but the bit at the bottom that states "Don't try this at home" made me chuckle.

There is no practice run in life.
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14 years 4 months ago #15200 by specialk16
Replied by specialk16 on topic Re: Article about Supplements
OMG he is VERY blue..... Wow! people really need to think twice before taking supplements.... I was just told about a supplement to help with my lupus, Immunocet, still doing my research.

Kasha
MCTD (Lupus/Raynauds), Sjogrens, ITP
Plaquenil 400 mgs
Prednisone 10 mgs
Imuran 50 mgs
Rituxan 2005 and 2008 (can't take anymore, body rejected it)
14 years 4 months ago #15212 by
Replied by on topic Re: Article about Supplements
Blue is a pretty color but not when it makes you a Smurf!

Kasha I'm glad you are going to research Immunocet - I couldn't really find anything about it that says what it is although one site mentioned something and I googled it and it was a B vitamin or in the B12 family [sorry, I did this earlier and forgot to bookmark it]. My feeling is if it sounds too good to be true it is.
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14 years 4 months ago #15243 by specialk16
Replied by specialk16 on topic Re: Article about Supplements
Melinda, the person that wants to treat me for it works for a Chiropractor and is registered dietitian. She is currently treating her sister that has RA and has lowered her RA factor *shrugs* my thing is I don't know how it is going to affect what I am currently taking, plaquenil and prednisone and can't find anything online to verify that there won't be a reaction... but I am with you, too good to be true is what I am thinking too. I already have enough "issues" why bring on another one... ;)

Kasha
MCTD (Lupus/Raynauds), Sjogrens, ITP
Plaquenil 400 mgs
Prednisone 10 mgs
Imuran 50 mgs
Rituxan 2005 and 2008 (can't take anymore, body rejected it)
14 years 4 months ago #15247 by
Replied by on topic Re: Article about Supplements
Kasha - can this registered dietitian tell you what is in the Immunocet? I may be missing something but even at the site, immunocet.com, I can't find what this stuff is - what is in it. I would want to know what is in it and then run it by my doctor.

Want to tell you - glad you are here, you are a positive person and an encouraging person.
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14 years 4 months ago #15249 by specialk16
Replied by specialk16 on topic Re: Article about Supplements
Awww Thank you Melinda... I like being here, everyone has been so nice... and trust me, you will never get rid of me with these kind of compliments...

RE: the supplements... I am going to run it by my doc, I am actually in between rheumatologists right now (go figure since I am in a flare) but I am not too happy with the care I am getting. but anyhoo, I am going to be meet with a doc from the UM hospital so maybe she can give me a little bit of insight also.... Thanks for the advice!!!!

Kasha
MCTD (Lupus/Raynauds), Sjogrens, ITP
Plaquenil 400 mgs
Prednisone 10 mgs
Imuran 50 mgs
Rituxan 2005 and 2008 (can't take anymore, body rejected it)
More
14 years 2 months ago #16948 by ashna1
Replied by ashna1 on topic Re: Article about Supplements
Hi
Just wondering if anyone has heard of the brand SISU..
I take everything SISU..
B-complex
Vit C
Vit D
Iron
Calcium
I hear they are good but I am willing to change brands if not...
I just dont want anything to mess up with ITP.
Currently taking 15mg steriods and IVIG every 3-4 weeks..
In process of proving to my hemo that once I am off the steriods my count will stabilize lol. I believe that symptoms I was getting (blood blisters, nose bleeds etc) were due to side effects from being on steriods for 2 1/2 years. PLease send prayers that once I am off the horrible drug in a months time my count will stabilize to over 50..
Coming off the predisone is another roller coaster (at work trying to keep eyes open lol)...