Hello all, my name is Marek and I'm from the Czech republic. My 27-years old wife has had two hemangioblastoms removed from C-5 and Th-10 two months ago. Now we are looking for treatment against VHL and hope we have found it because we cooperate with one good doctor here in the Czech republic. This doctor treats his pacients by alternative medicine and we trust him because we have been having many experinces with him for many years.
He recommended us to use some anti-tumour teas like Manayupa, Vilcacora, Tahuari and Anona and also preparations like Sangre de Drago and Maka+Quinua. These products mostly come from Peru. Doctor will also give us some anti-tumour injections. Furthermore we use a drinks made from mushroom like Tibetan Mushrooms (is called also like Yogurt Plant, Yogurt Mushroom, Yogurt Fungus or Snow Lotus) or Kombucha. These mushrooms have similar effects i.a. detoxication of organism and works against cancer.
I also heard about some product from shark cartilage which is able to stop of angiogenesis and it could be good treatment to kill of hemangioblastoms or another tumours. But unfortunately I personaly don't know anyone who has some experience with this product.
We are at the begining of the fight against VHL but we hope that is the right way because classic medicine provides no treatment against it.
So we are looking for other people which have some positive experience with particular treatment of VHL.
Good luck to all!
Marek
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Treatment and alternative medicine
- By romcaromca
- Posted December 27, 2008 at 9:29 am · 3 replies
- In Medical treatments that worked for me
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- By joyceg98
- Posted February 10, 2009 at 4:33 pm
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I hope you have been through our list of questions to ask your doctor about stereotactic radiosurgery. Please be sure to do so before your Cyberknife procedure, to avoid possible problems.
See http://vhl.org/stereo
Thank you,
Joyce
- By Frupper
- Posted February 9, 2009 at 3:55 am
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Hi Marek,
I am an VHL from Czech republic patient as well. I would like contact of your doctor if it is possible. I have one brain hemangioblastoma removed. But also I have tumor in TH1 and medulla (prodloužená mícha). I have kedney tumor removed. It would be great to exchange some experiences related to our health system in ČR. I feel O.K. so far. Now I am trying to manage Cyber Knife surgery in Munich. We expecting baby in March I hope that she will be O.K. Having some experiences with pre-implementation genetic test. Please contact me stimpoff(@@)gmail(tecka)com
- By joyceg98
- Posted December 28, 2008 at 4:18 pm
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Be sure to continue your scans at the same time. It is important to be able to document what these treatments are doing for you (or not).
We had a number of people who tried shark cartilage some years ago. Nearly all of them had increased tumor growth. The biggest problem was that few of them had good "before" pictures -- we didn't know how long the tumor had been there, and how rapidly it grew, because we had nothing to compare it to.
We would be delighted to hear about anything that seems hopeful!
Best wishes,
Joyce
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