Has anyone heard about Tibicos for Lupus?

General
1

Hi all!

I'm asking everyone here if any of you have heard about Tibicos, Water Kefir or as we tell in my country "Tibetan Fungus, or Tibetan Mushroom"

A TV figure told in his TV show this kind of thing "can cure or are a good treatment" for a long list of illness such as Cancer, Depression, Obesity, and LUPUS.

The problem is this Tibicos work making the immune system stronger and higher!

In Lupus Chile we have had some figths among some members, because are some people who are tyring with this things and others who don't like them and think they can be negative for Lupus....

Even more, there is this woman who used them, but she got a crisis after them :/

Well, what am I looking for?

I'm totally opposed to this "miracle cure thing" and as I've been reading and as I've already said, this tibicos increase the immune system, so they are counterproductive for an illnes like Lupus.

My problem is I have not found any medical support for my position, and people ignore all the advices against tibicos.

Have you ever heard about this Tibicos as a treatment for Lupus???

I don't want anyone else get a crisis because of this, so please, if any of you have info about it, please share it with me :)

Greetings,
from Chile!

2

Hi Pinkycito,

I can only speak from personal experience as i have not seen this ad. Many of my early symptoms had to do with my digestive system and I was origionally misdiagnosed with infamatory bowel disease. I have and still use Kefir and other probiotic supplements to help with my disgestive problems. They alone make me feel about 30% better- they have not cured me but they do help a lot with my digestive symptoms.

Have a great day!

Meg

3

Hi Pinkycito,

This is one issue i can't help you with but the best of luck with members who are answering you.

Hugs Terri xx

4

Thank you for share your story Meg!

Of course Tibicos cannot cure any illness, but the problem is they have not any medical support, it's only a traditional product.

But, they are probiotics, so they work very good with some intentinal problems, and thanks God they work for you.



MegLupusNewbie said:

Hi Pinkycito,

I can only speak from personal experience as i have not seen this ad. Many of my early symptoms had to do with my digestive system and I was origionally misdiagnosed with infamatory bowel disease. I have and still use Kefir and other probiotic supplements to help with my disgestive problems. They alone make me feel about 30% better- they have not cured me but they do help a lot with my digestive symptoms.

Have a great day!

Meg

5

Thank Ann!

I've reading a lot about this Tibicos of Kefir grains, and as you say, the problem is when people replace their medications with this kind of product.
And w already have a woman who did it and now she has a crisis.

Gonzalo!

Ann A. said:

Some information on water kefier grains

http://tibicos.org/

A commercial pastuerized Kefir

http://www.lifeway.net/Probiotics/

These commercial drinks a marketed for their probiotic qualities and not as a replacement for lupus medications. Sometimes when people use anything that is touted as a "miracle cure" they stop taking their prescribed meds and that pushes them into a crisis.

Good luck Pinkycito.

6

Don't worry Teri!

I even wrote to LFA and St' Thomas Lupus Center in London.

I was really worried about this product, because people is thinking Tibicos can really cure Lupus and they are stoping take thei treatments.

But as LFA and St Thomas told me, there is no medical trial or research about it, so every kind of benefits from the Tibicus are not tested and in an illness like Lupus all this kind of "natural things" can make worse because of the allergics or immune fails of the body.

So, now I'm more relaxed because now I found a serious support to tell people to avoid this kind of things.

Tez_20 said:

Hi Pinkycito,

This is one issue i can't help you with but the best of luck with members who are answering you.

Hugs Terri xx

7

Hello pinkycito,

It's a good job you phoned up and found out about it, especially if people with Lupus are stopping their meds and if it's a natural substance they don't always work plus counter reaction with other drugs besides Lupus meds can happen and like you say allergic reactions.

Well i really do wish you all the best on alerting people of "Tibicos" and i hope it does'nt fall onto deaf ears.

Best of luck Terri xxx
pinkycito said:

Don't worry Teri!

I even wrote to LFA and St' Thomas Lupus Center in London.

I was really worried about this product, because people is thinking Tibicos can really cure Lupus and they are stoping take thei treatments.

But as LFA and St Thomas told me, there is no medical trial or research about it, so every kind of benefits from the Tibicus are not tested and in an illness like Lupus all this kind of "natural things" can make worse because of the allergics or immune fails of the body.

So, now I'm more relaxed because now I found a serious support to tell people to avoid this kind of things.

Tez_20 said:

Hi Pinkycito,

This is one issue i can't help you with but the best of luck with members who are answering you.

Hugs Terri xx

8

Thanks Pinkycito,

Sometimes those ill with lupus are willing to try anything; however, it can be extremely dangerous. Thanks for the alert. I just recently heard about it myself and a friend rushed to get access to a similar product. I'm not against natural products that are tested and proven to be helpful but the new ones where no studies are out there...Caution Advised!

Thanks!

Faye

9

Hi Pinkycito,

Hows things going since you added your thread, have you found enough back up info?...to alert people about it.

All the best Terri xx

10

Hi Faye,

You are so right on what you say!
This Tibicos are extremely dangerous for people with Lupus.
The problem here is they are not proved to be helpful so people should not try this kind of things!

Faye said:

Thanks Pinkycito,

Sometimes those ill with lupus are willing to try anything; however, it can be extremely dangerous. Thanks for the alert. I just recently heard about it myself and a friend rushed to get access to a similar product. I'm not against natural products that are tested and proven to be helpful but the new ones where no studies are out there...Caution Advised!

Thanks!

Faye

11

Hi Teri!!!!

Yes, I found some point of view from Lupus specialist...
I talked to a Chilean rheumatologist, I write to LFA and St Thomas Lupus Center, UK.

I'm very happy with their answers because they have the same point of view than me.

Here I transcribe the answer from St Thomas Lupus Center:

"As a rule lupus patients are not advised to take products that may boost their already overactive immune system.
Added to this, lupus patients tend to be “allergic”, and dairy products come high on the list of foods that patients may be sensitive to.
Many alternative therapies can interfere with prescription drugs, or can be dangerous if taken in large quantities. It is important that the patient discusses taking supplements with their doctor before taking alternative herbal therapy, or dietary supplement.
Very few long-term research programmes have been conducted into the efficacy of these alternatives, aysicians are reluctant to recommend any specific remedy, particularly as lupus symptoms vary in the individual.
Another difficulty with some complementary therapies is that the exact dose of the active ingredient cannot be predicted or guaranteed. Complementary therapies may therefore add and additional complicating factor that the doctor need to be aware of. "
So, with all the answers I wrote an official statement from Lupus Chile about this kind of things and people is totally aware aware of its dangers.

Thanks for your time!!!

Gonzalo :)

Tez_20 said:

Hi Pinkycito,

Hows things going since you added your thread, have you found enough back up info?...to alert people about it.

All the best Terri xx

12


Thanks for your kind words Ann.
Ann A. said:

Thanks for sharing this Pinkycito,

Chile is lucky to have you and so are we at LWL.

13

Hello Gonzalo, :) at last....someone said you was from chile.lol

I'm really pleased you found this info and these people stepped forward, which is brilliant for the point of view your making plus having it confirmed.

Best of Luck & i hope alot of people take notice plus it's another added bonus for we to know and you also adding it to the site...thank you.

Takecare Terri

14

Thanks you Teri....

In fact, today another girl was asking about tibicos in our group, so we gave her all the information about it and the dangers they can cause.

But now there was not any fight or troubles... we could give a correct information from what specialists say about them.

See you!

15

Well i am pleased you was able to pass on advice soundly without any trouble and it's a good feeling when that happens...besides proper notice being taken.

Takecare mate :)

pinkycito said:

Thanks you Teri....

In fact, today another girl was asking about tibicos in our group, so we gave her all the information about it and the dangers they can cause.

But now there was not any fight or troubles... we could give a correct information from what specialists say about them.

See you!