Phacomatosis

• By birdmom
• Posted June 25, 2008 at 9:31 am

Hi yes I have heard the word Phacomatosis used in reference to von hipple lindau before, when I first got my MRI's back of my spine I was seeing a chiropractor/nuerologist when he saw hemangiomas of the spine he said it looks like you might have Phacomatosis, he went on to tell a story of spending afew years in Japan,where he met his wife.He said neurofibromatosis, some thing called Tuberous sclerosis and Von Hipple Lindau are well known in Japan by Phacomatosis so I assume it is the same diease. It doesn't surprise me at all in our own country ,we have several names associated with these dieases ,but in fact they are all one in the same., I guess It all depends on where people are from and what they have been taught. I would not be afraid to try some of the natural herbs he is suggesting,take in consideration though ,that some herbs may interfere with some medications ,if any you are on. I do know that if you ask your MD he may give you a funny look, I am not so sure that some MD's think that some of these natural healing dr's are quacks. Good Luck I will be curious to know how well you will be feeling in a few months,If you do deside to try the natural way ,I would be interested to know which herbs would be helpful, I wouldn't mind trying a few myself. BE HAPPY and HEALTHY Birdmom

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• By marie3
• Posted June 25, 2008 at 1:07 pm

Birdmom,

Today I began my regimen of "all natural" medications.
I am taking Thuja Forte, Gynacoheel, Ba Zheng Pian, and Shu Gan Pian. Also I will be picking up this tea from a particular healthfood store. I have been taking some ocular medications since January (Pred Forte, Atropine, Cosopt). This doc said no drug interaction. I am a little nervous as I do not like to take ANY type of drug. I'll keep you updated.

Marie

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• By birdmom
• Posted June 25, 2008 at 4:50 pm

Hi again, some of those herbs look like a menu at a chinese resturant. I think often before medicines were invented,what did people do? But of course, they used the herbs of the earth ,old ancient chinese secrets are sometimes the most helpful in healing lifes diffucult aliments.Not that I think Von Hipple Lindau is just a aliment,or anyway an easy diease to heal or deal with,I do think that some of the better advise comes from the world of natural healing.We have come a long way in the world of medicine, I know that some of the meds given to me in the past had some horrible side effects. I am thankful for people that have good ideas about natural healing.I am more willing to try herbs than some of these new drugs that are available. Thanks for the info I hope the natural healing dr my daughter-in law suggested I see can help me.I did see a reflexologists about a year ago I really liked his way of treating me, I just couldnt swallow all those capsuls. I did open them and pour them in my favorite juices. There must have been a reason for you being here today I kept putting my daughter-in law off on her advise to see her accupuncturist,do you know if some of there herbs are in powder form? I hate swallowing a whole bunch of capsuls a couple times a day.Usually I am so full from them that I have a stomach ache. Thanks again for your input on natural healing.I will let you know my menu as soon as I see him. Stay in touch best of luck to you and your family. Birdmom

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• By marie3
• Posted June 25, 2008 at 10:49 pm

Getting back to your question on pills coming in powder form---one medication is a liquid, another is a small pill that you just dissolve on your tongue, the other two are solid pills which say to drink with warm water. I bet they dissolve easily.

Talk to you soon!
Marie

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