Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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Another possible treatment for NF

hamby03
hamby03
My wife works for a chiropractor who also practices Chinese medicine and alternative treatments and he said I might want to try a product called Haelan.

Apparently it's been used to shrink and get rid of tumors and he thinks it might be worth trying. His wife had numerous cysts in her head and she used this product and it got rid of all the cysts. They just went away He also has patients who have used this product with their cancer treatments and they swear by it.

The only problem is it's about $60 a bottle and you're supposed to drink a bottle a day.

The company has a website at http://www.haelanproducts.com/

I've also found several legitimate research information sites that have info on the way this product just seems to get rid of tumors. Heres a site I found with research info.

http://www.haelanresearchfoundation.com/research.html

Of course, since it's a new age type medicine, most doctors don't even want to talk about it, but I did some research and might actually give it a try.
petals
petals
Well this is just my opinion but if I had NF I wouldn't go near this product for all the tea in China! For starters, the research link seems to be the company's own website. Second of all, it's a soy product. Soy has phytoestrogen which means that it may have hormonal properties and since 5% of neurofibromas have estrogen receptors I wouldn't chance it. The soy isoflavone, genistein, has been found to stimulate the growth of some estrogen dependent cancers and promote growth in some tumor lines. Thirdly, soy has lots of omega 6s which are pro-inflammatory...NF tumors may be related to inflammation. Lastly, on the CTF BB there have been some folks who reported that they felt soy contributed to their tumor growth. Not everything written about soy is positive and not all things are good for all people. Nope no soy at our house.

I am a believer in Chinese medicine and I actually do think that there are some Chinese medicines/herbs/spices that might benefit NFers... but it would take a lot for anyone to convince me that soy is one of them.
hamby03
hamby03
I might try a few bottles just to see, but I agree with you petals, I definitely want to be cautious. The doctor my wife works for said he's seen it work miracles on tumors, but he's never talked to anyone who used it for NF.

If I try it, I'll keep you posted.
deleted_user
deleted_user
OH PLEASE CHINESE MEDICINE I HAVE HAD NF FOR 41 YRS AND ALL MY LIFE THEY HAVE BEEN LOOKING FOR A CURE AND SAYING ALL SORTS OF OTHER STUFF WILL HELP. WELL IT'S ALL BLOLOGNA ANYONE WITH NF SHOULD NOT BE TAKING SOY OR ANY SOY PRODUCTS FOR 60$ A BOTTLE IT'S NOT WORTH IT
petals
petals
Actually, there have been some Chinese/Asian substances (herbs, plants etc) that have shown promise in controlling tumors in NF mice. A few of these have been presented to CTF and written up in scientific journals. For a variety of reasons they don't seem to get picked up for human studies. Not saying these substances work... only that I wouldn't dismiss them out of hand.

That said, my opinion on soy still stands but to each his own....
deleted_user
deleted_user
There's a geneticist in one of the Asian(I know exactly who and what country, but for my own privacy reasons I'm not going into that detail) country who tells her patients not to take chinese herbal medications. She has noted I guess that more tumors are present on patients who's taken lots of chinese traditional meds.

That's only her observation so I don't know exactly what to think... but considering lots of times parents feed their kids 'growth promoting' stuff (as in height) in their youths, that's not surprising she's seeing that correlation.
petals
petals
Grnmnm,
I can totally see where the Asian doctor you spoke of could be correct in her observation. Even here there are several products that a Naturopath might prescribe that maybe NFer's really shouldn't take.

Hopefully though as we understand more and more of the mechanisms involved in NF and the properties of certain plants we will be able to find some appropriate matches.