FYI: Echinecea

Many people use echinecea as a cold remedy, or to help the immune system.

My daughter has an an immune deficiency that she will have to be treated for regularly for the rest of her life. I looked into the echinecea and found something out that I wanted to share with you.

On the bottle of echinecea it read "should not be used by people who have immune deficiencies."

I asked my daughter's doctor about it and she told me that not only people with immune problems, but cancer patients as well, can get "fungal infections" (sometimes even in the lungs) from echinecea and she did NOT recommend it.

Just a heads up for anyone thinking about using it - ASK your doctor first if you have cancer or an immune problem.

for immune deficiencies you should be taking Ganoderma lucidum of Grifola frondosa.
My preference is Ganoderma... tasty tea too.

Drew

Thanks DeepRoots - I will ask the doc about those.

While my mom had cancer this past year, her doctor was SO strict about any herbal treatment. He made her run EVERY little vitamin, supplement, or even herb tea by him first. It seemed crazy. But I guess modern medicine and natural medicine dont mix too well when it comes down to that fragil of systems. I'm glad you pointed that out Karrie.

Art,
Some herbs are great - I use them myself! But for those that get ill very easily (i.e. cancer patients, or those dealing with immune deficiencies) you just can't take chances with something that could actually cause an infection, even fungal. I was surprised myself, but glad I asked the doctor about it. My daughter has been in the hospital enough already, and she's only 14. It is hard on her, and also hard to pay for.

TCM and western medicine do not clash...
Western doctor's egos clash with many things tho.
I have more respect for a plumber than I do a doctor.

That must be difficult to deal with Karrie, its good that your doctor told you that. I take herbs a lot too, especially echinacea for when I'm sick. Your daughter must be very resilient, and I'll pray for you both. Deep, I agree!

Well, when it comes to my daughter's health, and her immune deficiency, I am not taking any chances. It is a proven medical fact that Cancer patients and people with immune deficiencies get fungal infections from echinecea. Not taking chances there! :)

Thanks for your prayers Art!

Karrie,
My hopes and prayers for your daughter's health. Would it be insensitive of me to ask how a person would get a fungal infection from drinking echinecea tea? I would be interested in any published studies that linked the two.

i did google searches looking for any documentation of echinacea causing fungal infections..
i did find this, though
"There is some controversy over the use of Echinacea, although we?ve had good clinical success using Echinacea to support the immune system among HIV-positive patients for more than 10 years"
at this website about holistic aids and hiv treatments: http://www.wrc.net/wrcnet_content/encyclopedia.aspx?aid=6
but all i can find is that it's widely used to *treat* fungal infections
i would think that any plant matter that's been chopped and processed and sold in stores has been sitting on shelves for quite some time, and could possibly harbor some fungal growth.. maybe that could cause an infection if your immune system is suppressed
but i would also think that using fresh ingredients from your garden that you've raised yourself (and possibly treated for fungal growth..if that's even possible?) would be much better than using things off of a shelf

anyway.. my personal opinion is that i would much rather put things that are natural and come from the earth into my body than most of the drugs that doctors are prescribing today
i mean.. what are the side affects of those drugs? are they really worth the small amount of relief that the drugs provide?
i know herbs and plants and things when taken as medicine can have side affects too but could they possibly be worse than some of the strange things that some prescription drugs do to you these days?
it seems like just about every prescription drug i've ever received from a doctor has had warnings on it warning that it could kill you .. or cause you to have renal failure, or develop liver cancer.. or brain tumors... or all sorts of other weird things

note: i'm not saying that i think you should give your daughter echinacea against her doctor's orders, but i am suggesting that you might want to look at the medication he's prescribed your daughter and see what side affects it might cause.. and then think about it :)

Kim



This message was edited Jan 18, 2004 7:19 AM

I always hesitate to take any medication, herbal or otherwise without all the info I can accumulate without research first.

This site may be helpful: http://www.consumerlab.com/results/echinacea.asp

This message was edited Jan 18, 2004 2:45 PM

Well said Kim. In the case of Echinacea two of the most common delivery systems are a tincture with an alcohol base and brewed as a tea. either method done correctly will kill any fungal spores. I agree with your preference for "natural" stuff.
barbi- If everyone assumed some responsibility for their health issues, like researching any medication natural or otherwise,we would be better of, and doctors would not be able to limit their knowledge of pharmaceuticals to the manufacturers hype, and self conducted trials.

Dough, that is just something that an her doctor told me.

Kim, my daughter isn't HIV. She has "common variable immunoglobulin deficiency." She has to go in every 2 weeks and have a globulin infusion by IV. The globulin comes from plasma (human donors).

We just simply can not take a chance with her ending up in the hospital AGAIN, over something that even specifies on the label that she shouldn't have it.

Karrie

I love herbs for myself. But for her - I have to ask first.

This doctor also isn't against herbal treatments, she's just against certain herbs for specific diagnosis and she has studied, researched and should know.

Karrie I very much respect your sensitivity to what you may have percieved as criticism in this thread. I am positive that you will do the best that you can possibly do for your daughter. Bless you both. I think some of us just vented a little frustration at the medical establishment. Take care of yourself,and thanks for being patient and civil.
wishing your family the best
Doug

It's ok Doug. I do understand that there is some frustration with the medical world vs. natural methods.

i wasnt saying that your daughter has hiv.. or anything, i wasnt aware of what exactly she had.. i was just posting a quote about a place where they recommend treating people with hiv and aids (isnt that like the most famous immune disease?) with echinacea and having success with it
and i didnt mean to criticize you, if i came across that way
i just dont see why some people put some of the things in their bodies that they do...just because a doctor prescribes it does not *always* make it good.. or even safe for you to take....

but anyway.. i'll just stop now before i get going on another rant! lol! :)

Kim

Your absolutely right deeproots, if natural medicine were to become what's the word i'm looking for, FDA approved, I guess, it would put dr.s out of business and the pharmacists, it's a cut throat business. How can a doctor approve of natural healing medications, it would be against everything he's learned and believed in.

When the doc diagnosed my son with ADHD he immediately wanted to put him on redilin, I said no I wasn't going that route. he knew what I was talking about, got upset, said it wouldn't work and abruptly left the room, with me and my son just sitting in the patient room, he came back in. only to see us packing it up and heading out the door. he's no longer my children's doctor. My son is no longer ADHD and we did it without redilin

I too have absolutely no respect for medical doctors.

My daughter has ADHD as well. But what she is being treated for (immune deficiency) is life threatening. I can't take my chances.

I think I'm being veiwed in slightly the wrong light here...

I have met just as many quack herbalists as I have doc's

drew

yes, and when your daughter's oncologist tells you that echinecea can cause fungal problems to the lungs to the weak like her, you tend to take heed, as I did. Never meant to create a stir, just wanted people to know before they recommend it to their own friends fighting cancer or immune deficiencies. It even says on the label of Echinecea you get from the store in bottled form, "not recommended for those with immune problems".

Now, if it were THEIR child, what would they do?

I stumbled across this thread and found it very interesting.

I feel much the same about doctors and their egos. A year ago I had been chronically ill. Stomach problems, ear infections....ect. The doctor prescribed me some antideppresent or something like it. He said I was to aware of my own body.

I chucked the sample he gave me into the trash and went to the bookstore and started reading and reading...I did more for myself with healthy eating and herbs then a doctor every has.

BUT if my child and a serious health issue, I don't know how quick I'd be to decisions on my own. It would be a scarey prospect to take their health care into my own hands. I wish you and your daughter well Karrie, and I hope a better treatment becomes available for her soon.

It's most important to be able to trust your doctor, really. Don't be afraid to shop around if they make you nervous, or to ask for second opinions. They're supposed to be advising you, not controlling you.

When I first fell ill, my doctor at the time wanted to "wait and see if it got better" after I had been too sick to work for several months. She wanted to prescribe anti-depressants based on no psychiatric evaluation, too. She refused to consider food allergies as a problem until I proved to her that wheat was causing me problems (by going on a very laborious elimination diet.) I then tested positive for gluten intolerance, which is a hereditary and very difficult problem which she had told me could not possibly be a factor. I then saw an allergist and found that I was extremely allergic to many common allergens; I've been doing as much immunotherapy as I could manage and my fatigue has improved moderately as a result of that. Their theory is that the allergic response is more for my body to deal with, which is why I have more fatigue during peak pollen seasons and less in the winter; allergies don't cause it, but they make it worse.

So I went to my former doctor in another town, over an hour's drive away, because I trusted that clinic and did not trust the nearby doctor -- this at a time when I had to get my husband to drive me because I wasn't able to drive that hour. She gave me the tests and access to the specialists I needed. I eventually got a referral to a local doctor who is more experienced with chronic illnesses, but I'm very happy that I got away from my first doctor.

I see a Chinese herbalist/acupuncturist as well as an M.D. The acupuncture helps my energy levels enough that I can usually do my shopping that day, and I keep him appraised of any tests that I have been doing with traditional medicine. I keep my doctor in the loop with the Chinese medicine. They are both willing to let the other one work, and they both admit that their specialties are strong in some areas and weak in others. I'm able to use them in synergy, which is fantastic.

For example, when I was at the faraway doctor I did finally try anti-depressants (because I was so sick and desperate I was willing to try anything.) The side effects made me a lot worse, to the point where I was almost nonfunctional -- I was sleeping something like 18 hours a day on them. My acupuncturist was seeing me more regularly (M.D.s don't have time in their busy schedules for that!) and encouraged me to get a second opinion; I really needed that since I was in such bad shape I didn't want to contradict my doctor or do anything that took energy. I saw a psychiatrist who immediately told me to taper fully off the antidepressants (and that despite my hopes that he could find another pill that *would* work, it wasn't psychological or brain-chemical), and I improved drastically. The psychiatrist is actually the one who gave me the local referral to the GP, and my current GP does a monthly group "class" for people with chronic pain and high blood pressure, so I now get regular access to a doctor in a something other than a "what's your problem this time?" context, an almost unheard of luxury.

I've been having disrupted sleep throughout as one of my symptoms; my M.D. doesn't want to prescribe any drugs unless he absolutely has to (and I wouldn't want to take them, frankly), but he didn't have any other suggestions. My acupuncturist suggested I do a 24-hour saliva test for cortisol, DHEA, and melatonin levels. I did this and found out my cortisol was incredibly low in the mornings, when it is spiking for most other people. I spoke to my M.D. and he referred me to an endocrinologist.

I'm still waiting for my follow-up with the endoc, but it turns out that thyroid and adrenal problems can cause fatigue and most of the other problems I've been having. I showed up with borderline low thyroid but apparently the standard test that everyone does (I've had it two or three times) isn't very useful. The endoc ordered a lot of detailed tests for thyroid and adrenal function, and now I just need to wait to see what she wants me to do. I am probably going to be put on hormone therapy (because she told me she'd just call on the phone if they were negative, and only have me come in if there was something she could do for me) and that may be the breakthrough I need. I'm not pinning my hopes on anything yet because I haven't seen her, but this is an example of the kind of synergy you can get if you find an M.D. who's willing to consider input from alternative medicine -- without that low cortisol reading I never would have considered asking to see an endoc, and none of my other GPs or specialists suggested it either.

In the case of herbalists, doctors, anyone, my opinion is that you want to test them by doing a lot of reading about what they say, and check them with each other. A secure practitioner is willing to answer polite questions and explain everything; they have to respect you to be worthy of respect.

I've heard a lot of wacky stuff from both Western and alternative approaches, too. It's very important to be careful, smart, and well-informed. One of the best things I heard was from a rheumatologist, who verified that at least I didn't have rheumatoid arthritis or lupus, and he told me that what I needed to do was to find a sensible way to *manage* this, because fibromyalgia (my current diagnosis) isn't curable; you just try to stay as healthy as possible and hope it goes away. I really needed to hear that.

Now, it's my hope that this upcoming appointment with the endoc will change the diagnosis to a thyroid or adrenal deficiency, since that's treatable, but this has been a long road and may well continue to be. It's my job to be as smart and careful as I can about what I do, manage my life so I can enjoy it *now* instead of waiting until a possibly mythical future when I am better, and balance risks vs. rewards. Being able to trust those who regularly help me has been a big part of this.

I do love herbs used wisely -- my herbalist found an herb that prevents migraines in me, and it has no side effects at all. (I've gone off it for a few weeks to see and the only side effect is that the migraines come back, heh.) But it *is* important to be careful; I had a complication early on that prevented me from eating such a simple everyday herb as peppermint, something that you wouldn't even think of as strongly medicinal. (And it was fixed by dandelion root, another herb that seems very common and everyday, as well as proper diet.)

This got super long and rambly, but what I was trying to get at was that it's not doctors vs. herbalists... it's smart, helpful, competent herbalists/doctors vs. those who don't really care or who don't know and are afraid to admit it. Always read up on everything suggested as a therapy, from multiple sources (or at least one trusted source), and get a second opinion if it makes you uncomfortable.

I forgot to add to my too-long post: Karrie, I do hope your daughter does well, and I'd do just the same in your shoes. Even though echinacea and herbs in general can help people (and I can definitely understand the urge to recommend them if they've helped), that doesn't make them one size fits all.

I didn't know this and I'm glad I found out. I also have immune problems. Mine is called Interstitial Lung disease with resulting hypersensitivity pneumonitis. In other words, without prednisone everyday I have inflamation of the tissues of my lungs. I don't take echineacia but I raise quite a bit of it because it is pretty. I've tried it and have some side effects that aren't worth it. Our DIL tried it a few weeks ago and nearly lost her milk supply for the new baby. Anything can have side effects on anyone. Even natural herbal remedies work because of the chemicals in them. We must be informed to make proper decisions. I support you in your decision to not use this herb at this time for your daughter.

This message was edited Feb 12, 2004 12:37 AM

Leaflady...
do some research on Polyporus umbrellatus.
a fine immune stimulant mushroom... well, actually not the mushrooms perse, it's actually the sclerota (no jokes there) which is an underground tuber formed by some mushrooms.

It has showed great success with people recovering from lung cancer.
something to look into and ask around about at any rate.
Drew

Flit - you have my admiration! You obviously have worked hard to regain your health and have been a very active partner in that endeavor. I think many people would have given up early in your quest.

As for the medical profession, it disturbs me to hear people do an all out dump on the whole bunch. That's just like racism! Condemn a whole society for the sins of a few. The better choice would be to be informed, take an active role in your own health, ask questions, read a lot and get a second opinion. Remember, they have spent years learning in school and we only have time for reading on the net and in libraries.

I've only had one bad doctor who almost killed me twice! I was only 21 and knew very little and lived 1200 miles from home. If my mother had been close by, she would have seen the red flags and fought for me. I was too naive and sick to see them. I have since learned a lot and questioned many things I am told. To this day, I have not been steered wrong by another doctor and have come to admire the willingness of the ones I see to listen to my opinion and value it. I think that is the main point - find a doctor that will listen to you and value your opinion!!

Kooger, I couldn't agree with you more! When a doctor tries to tell me what kind of pain I'm experiencing I have to laugh! A good doctor is one that listens to you, realizing that you DO know your own body, and that doctor can make a much better diagnosis by listening to you.