Table of Contents

QUESTIONS & ANSWERS
TED'S REMEDIES
BEE PROPOLIS
GENERAL FEEDBACK
REMEDIES NEEDED
SUPPLEMENTS
SUPPLEMENTS AND DIETARY CONSIDERATIONS
TED'S REMEDIES




Neurofibromatosis (NF) Remedies

Updated: 12/13/2011

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"Neurofibromatosis (commonly abbreviated NF) is a genetically-inherited disorder in which the nerve tissue grows tumors (i.e., neurofibromas) that may be harmless or may cause serious damage by compressing nerves and other tissues. The disorder affects all neural crest cells (Schwann cells, melanocytes, endoneurial fibroblasts). Cellular elements from these cell types proliferate excessively throughout the body forming tumors and the melanocytes function abnormally resulting in disordered skin pigmentation.The tumors may cause bumps under the skin, colored spots, skeletal problems, pressure on spinal nerve roots, and other neurological problems.[1]"

Neurofibromatosis type 1 - mutation of neurofibromin chromosome 17q11.2

Neurofibromatosis type 2 - mutation of NF2 (Merlin) in chromosome 22q12

Schwannomatosis - gene involved has yet to be identified

Source: http://en.wikipedia.org/wiki/Neurofibromatosis

DISCLAIMER
Our readers offer information and opinions on Earth Clinic, not as a substitute for professional medical prevention, diagnosis, or treatment. Please consult with your physician, pharmacist, or health care provider before taking any home remedies or supplements or following any treatment suggested by anyone on this site. Only your health care provider, personal physician, or pharmacist can provide you with advice on what is safe and effective for your unique needs or diagnose your particular medical history.




TED'S REMEDIES

08/24/2007: Patricia from Montreal, Canada: "I am 22 and have membranous glomerulonephritis. I have had it for 6 years. I have been on TONS of different medication and nothing has worked. Recently I decided to go off all of my medication, since it wasn't working anyways I figured whats the point of me being on it then. I see a naturpath and homoepath and am very into natural health. My protien levels in my urine are the problem, I am now at around 3 mg protein a day in my urine. Over the past few years I have gotten better and better with other symptoms (water retention) and the oil pulling which I started about a month ago has really helped my energy. I am now able to work part time. A couple of years ago and I was taking 2 naps a day. It is just the darn protein! I had severe stress in my life before I got this, for sure this was the cause. Do you have any advice to get my protein in my urine down? Thanks! I love your website!"


Ted from Bangkok, Thailand replies: "Patricia: My own experience of high protein in urine is due to infection usually of bacterial origin, and indicates bacterial colonies or that the body is having an infection. Therefore zinc gluconate 50 mg/week, magnesium citrate 250 mg 5 days out of a week would increase the body's defenses against these bacteria, thus reducing the high protein in the kidneys.

Also whenever urine pH is acid, which means the pH of urine is below 6.5 (usually infections exists whenever urine pH is about 5.5, which is quite low). In which case raising the body's alkalinity would increase the immunity and reduce bacteria colonies. In which case a Apple cider vinegar 2 tablespoon plus 1/4 teaspoon of baking soda in 1/2 glass of water, taken twice a day, once in the morning and once before sleeping should help. Lime (lemon) of 8 teaspoon (or 2 tablespoons) plus 1/2 teaspoon of baking soda in 1/2 glass of water taken twice a day could also help too. But this is often done on alternate days.

Adding 1/4 teaspoon of sea salt in one liter of drinking water will raise the salinity of the urine somewhat so that the antibiotic effect of some salt, would reduce the bacteria thus reducing the protein buildup in the urine.

My own experience with "cloudy urine" usually from weaknesses can also lead to protein buildup in which case it helped me a lot to take vitamin B complex for a couple of days. The urine will often clear up and reduces the protein buildup from my own experience."

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8/24/2007: Ted adds: "One more thing, the membranous glomerulonephritis may be related to heavy metal toxicity which is why oil pulling works, although a proper oil pulling should be done between brushing of teeth, I believe taking some granulated lecithin would also reduce excess fatty liver and reducing the liver's congestion while the addition of one drop of close oil in one liter of water does help too but its mechanism is more in killing the bacterium in the liver is usually how the clove oil works in reducing the excess urinary proteins too."

"

EC: *** Ted's Remedies Reader Feedback here. ***

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BEE PROPOLIS

Ratings:
1
BETTER BUT NOT CURED

07/31/2009: Michael from Sabinal, Texas: "my name is michael martinez and i have neurofibromatosis and i was searching for anything that might help with what i have and i read that bee propolis might help with the tumors - http://www.naturalnews.com/026158_propolis_tumors_cancer.html"

Replies
[BETTER BUT NOT CURED]  01/27/2010: Goughey from Queensland, Australia replies: "My son as neurofibromatosis (NF1) and he has recently started taking bee propolis, we feel that since taking the product his immunity has been much better."
10/26/2011: Sarah from Greenville, Il replies: "Where do you get bee propolis?"

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GENERAL FEEDBACK

06/09/2010: Yvonne from Spring, Tx, Usa: "I am 51 years old and have had the odd freckling in my arm pits, back, shoulders, and torso since very early in my life. My parents took me to a USAF pedi dermatologist and later to a pediatrician. All I remember was being told I have cafe'ole' spots. No other doctor has ever expressed any concern until I went to a dermatologist recently about an unrelated matter. He has suggested that I have NF1. Other than the speckling on the surface of the skin I have no other markers or history, signs or symptoms. Should I be concerned?"

Replies
08/24/2010: Ncope from Harlingen, Tx replies: "To Yvonne from TX. If you are 51 years old and do not have any signs except the speckling on the surface of the skin, I don't think you need to worry. Most people start developing tumors by the time they reach puberty and it progresses from there. If you had a bad case, by 51 you would likely be covered in tumors. My mom has it really bad and I don't remember her other than being covered in tumors."

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REMEDIES NEEDED

06/23/2011: Saje from Shaftsbury, Vermont: "Hello- I have nf and so does my daughter-she is 4.. What can I do for her so that she does not devlop the growths like I have?? What can I do about mine?? Would like an update to the info from Ted- and appropriate amts. for daughter...THANKS!!"

Replies
12/13/2011: Wrvt from W Rutland, Vt replies: "This comment is for 'Saje from Shaftsbury, Vermont'. I am also a Vermonter (West Rutland) with this condition. I was wondering where you go for treatment? I am trying to find a local doctor who knows about NF1 but none of my local doc's know anything. I currently go to Dartmouth-Hitchcock and see a childrens doctor that I found on the NF website (ctf. Org). I originally emailed that doctor looking for a doctor that works with adults. Instead he told me to see him. Any suggestions?"

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09/08/2010: Woody from 29 Palms, Ca: "Have you heard anything on moya moya? My 4 year old has been diagnosed with it and NF1 and due to the shrinking of his artery to his brain. His body was over compensating by increasing his blood presure. We let the surgeons take a small vein from his temple to supplement blood to his brain, which has worked somewhat. Is there anything you know of that can help reverse or slow the progresion of the artery shrinkage?"

Replies
09/09/2010: Tenderfoot from Las Cruces, Nm Usa replies: "Not familiar with the disease overall, but for fragile arteries as an isolated symptom you might investigate the benefits of rutin."
06/08/2011: Woody from 29 Palms, Ca replies: "now the doctors are telling me that ontop of NF1 and Moya Moya that he also may have Glioma! This is the 3rd rare condition he has developed could there be some underling cause giving him the symptoms of all three? he has almost all the symtoms of all three to include high blood presure, and has had 2 strokes and he is only 4 yrs old so taking pills he cant chew is hard for him and some things you just cant give a kid that age at adult doses. Any ideas?"
09/29/2011: Ynnis from Fayetteville, Nc replies: "Please google "health benefits of honey and cinnamon". You will find many helpful tips on how to mix honey and cinnamon to relieve this and that, and even cure many ailments, including heart diseases, strengthening of the immune system...

Also, a regular dose of 1 teaspoon baking soda daily will help! Preferably taken in the morning. It tastes bad, but it relieved my husbands asthma, which he had since birth!"

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05/08/2010: Sally from Winona, Minnesota: "neurofibermatosis: My 13 year old daughter has cafe au lait spot (10) on her body. No other symptoms of this disease. The doctors say the spots may increase during puberty. Is there anything I can do??

Thank you,
Sally"

EC: For those unfamiliar with Café au lait spots:

"Café au lait spots or Café au lait macules are pigmented birthmarks.[1] The name café au lait is French for "coffee with milk" and refers to their light-brown color. They are also called "giraffe spots." Source: http://en.wikipedia.org/wiki/Café_au_lait_spot

Replies
12/02/2011: Jeff from Wilmington, Delaware replies: "HI Sally,

We have something in common---my 11year old daughter also has these spots and is being evaluated in Boston next week for NF. Would you mind talking about what you are going through and any natural options that you are trying/considering?

Jeff..."

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SUPPLEMENTS

Ratings:
1
BETTER BUT NOT CURED

[BETTER BUT NOT CURED]  01/08/2010: Tia from Spooner, Wi: "NF1

I have noticed since taking Vitamin C, E, and B that my tumor growths have shrunk. I dont know if it is just me who notices or feels it but I feel it is. Does anyone else know anything else I could take?"

Replies
10/02/2010: Zachary from Denver, Co, Usa replies: "Ive read that coloidial silver helps."

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SUPPLEMENTS AND DIETARY CONSIDERATIONS

Ratings:
1
YEA
1
WARNING!

[YEA]  06/02/2008: Gregory from Quezon City, Philippine: "I have read an article on the web, the remedy in NF1 [Neurofibromatosis -- brain tumor] , that Vit.E (400 IU) + Vit. C (500-1000mg) with rose hip and citrus bioflavonoid complex supplement; plus dieting by avoiding meat product, especially highly preservative food and sugar will slow down the tumor growth. I have try it over a year and a half. The result is satisfactory.

I wondering from Ted if there another way to reduce the tumor? Also if i can combine cesium chloride+Vit.B complex+ Vit.C+Vit.E and baking soda solution at a same time?Will there be side effect? Thanks..."

Replies
09/29/2011: Ynnis from Fayetteville, Nc replies: "If you really want a good dose of Vitamin C, there is nothing better than to pick the younger shoots of pine tree needles, and brew them with your favorite tea or alone. Take as many as you like. Those needles have more Viatmin C than any other source of Vitamin C. The tea will taste lemony... And good!!! Instead of sugar, add honey and cinnamon. You cannot drink anything more healthier than that!!!"
[WARNING!]  09/30/2011: Carly from Seattle, Wa - Usa replies: "A word of caution on evergreens.... Please be careful to make sure it is a pine tree, as some varieties of evergreens are not meant for human consumption.

Also - whenever I do yard work trimming up my evergreen trees and shrubs I get raised red bumps on my arms where the plant material has brushed up against them, so I am pretty sure I have allergies to them. (I consider it an allergy prick test at home) ;) so I personally wouldn't drink Pine needle tea because of allergy concerns.

Just a couple of thoughts. :-)"

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TED'S REMEDIES

Ratings:
1
SIDE EFFECT

03/01/2007: Nag from India: "Hi, i have been told by my Doctor that i have "Multiple Neurofibramotosis", he said there is no cure instead stop it to grow further with some E-Vitamin capsuls and B- Vitamins. I have this lumps on my both hands, some of them on my legs, stomach and on back so please tell me if you have any cure with detailed process to follow. And i have another problem that on pimples on my scalp itching and irritating sometimes it has been there for some 7 years and it is coming sometimes heavily and iam losing my hair aswell so please let me know the cures...Thankx in advance"

Replies
Ted from Bangkok, Thailand replies: "Nag:

And i have another problem that on pimples on my scalp itching and irritating sometimes it has been there for some 7 years and it is coming sometimes heavily and iam losing my hair aswell so please let me know the cures..

Try a three times a week iodine foot painting and take plenty of 2 tablespoon of apple cider vinegar and 1/4 teaspoon of baking soda three times a day. Once or twice a week evening primrose oil plus freshest flaxseed oil you can find also. Some vitamin C sodium ascorbate and cod liver oil taken 5 days out of a week.

The fibrosis condition, regardless of whether they are grown along the nerves or on the skin, causing thickening of skin or other issues too me appears to be an iodine issue PLUS zinc deficiency. Zinc acetate (or citrate, gluconate if you have trouble finding) 25 mg. taken about twice or three times weekly or two months. Selenium supplements, 200 mcg, taken 3 times a week will help with skin condition.

You should notice "remissions" on the second month at the longest. It must be noted that 80% of the diets is vegetable and whole fresh fruits only. For protein source, fish and chicken are generally safe. Some omega 3 supplements was mentioned.

I think there is a good chance for improving with sensible diets and supplements and some improvement can be seen on the second week. Keep your urinary pH within 6.5 - 7.35 and you should do o.k. If it is not high enough just take more ACV + baking soda or lemon + baking soda formula. "

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11/14/2006: Thomas from Columbia, SC: "The only thing you got right was what causes Neurofibromatosis. I have NF1, and I know for a fact that it cannot be cured that simply. If it were that easy, them the doctors would have found out years ago. If anyone else with Neurofibromatosis reads this, please don't try it expecting it to work, because it will not happen. However, we would love to have you join us on the NF web site. http://www.ctf.org. We have a Bulletin Board and Chat Room both open 24 hours a day, 365 days a year. Hope to see you there."

Replies
Ted from Bangkok, Thailand replies: "If someone wants to do nothing and doesn't want to give natural therapy a chance, just don't read this or even give it a try. And don't complain! Just go conventional medicine, get chemotherapy, or surgery, depending what the doctors say and follow his/her advice.

If you want to do something other than this, which may or may not work, or "unproven" therapy, then read on!

Recently I found that cesium chloride also helped. Apparently the potassium is replaced with cesium as the molecules of cesium is alike in a cellular respiration process and this particular disease seems to prefer potassium.

When cesium enters the cancer, the glucose metabolism is dissuaded, thus weaking the cancer cells. The usual dose is about 50-100 mg/day of cesium chloride mixed with plenty of water. There is some mention in other websites about the use of cesium for cancer therapy, but for this condition seems especially suited since it goes along the nerves where potassium is used as a conduction.

Glucose metabolism of the cancer cells was related to as mentioned in last postings to vitamin B complex, but zinc, chromium chloride, sodium vanadate to also slow down such tumor growth.

Cancer cells need anaerobic respiration via glucose metabolism to survive. These minerals as mentioned simply blocks it. The cancer of this nature where clove oil and lavender oil plus camphor powder is also peculiar interests if it is applied topically to possibly reduce the tumor."

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[SIDE EFFECTS]  09/15/2006: Steph from TX: "I have been taking the said things and its making feel a little ill, is this suppose to or is there something else I am suppose to take with it."

Replies
Ted from Bangkok, Thailand replies: "Consider taking plenty of vitamin B complex. Where Vitamin B1, B2, B3 (niacinamide),B5, B6, for example are at 100 mg. each, while B12 is at 100 mcg. Take some inositol and choline barbitrate are important. These feeling of illness is a sign of B deficiency. To help with the other missing B complex, taking about 1000 mg of brewer's yeast should round off the problems. Often the feeling of illness has to do with the immune system issue, but in this case of neurofibromatosis, vitamin B is implicated. If you are still feeling ill, consider raising the immune system by taking zinc acetate and magnesium citrate."

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10/16/2005: Mary : "Is there a cure or remedy for nf1 (Neurofibromatosis) brain tumors, skin tumors and the other illness's from nf1?"

Replies
Ted from Bangkok, Thailand replies: "I speak a very minority opinion that certain genes even they are in error can be hidden or not activated if given the right kinds of nutrition. Also in some cases there are research that shows if given the right activating factor, genes can also be self-correcting. As to the remedies, due to limited time I have I can give you only a small portion of the remedy, try to take just sodium ascorbate 500 mg. + 1/4 teaspoon of baking soda + 1/4 teaspoon of citric acid. And take only 2-5 mg. of lithium orotate or lithium carbonate per day or every other day your choice. Take a lot of brewer's yeast, 10-20 tablets per day. Your conditions at least the symptoms should diminish within about a month. Brewer's yeast contains RNA/DNA which will supply the needed nutrients for the body to have sufficient needs to correct itself somewhat. Take 500-600 mg. of Kyolic garlic/day as there is a possibility that the said conditions might be of viral origin which may interefere with the said conditions."
05/13/2009: Keisha from Mo Bay, Jamaica replies: "i start take all you remedy 3 days now so i will contack you sa soon as i see any result i really want you remedy to work for me becauce i getting vert angry when i look at my self somtimes my skin i have neurofibromatosis for the past 32 yrs now. i love these treatment to work for me but why i have to take so much brewer yeast 20 10 a day tell me y"
[YEA]  05/13/2009: Ted from Bangkok, Thailand replies: "Brewer's yeast has very small amount of selenium. If it's too much I believe just one to three tablet of selenium yeast supplements at 200 mcg would be fine.

As to questions relating to brain tumor it is extremely necessary to avoid all aspartame products hidden in chewing gums, effervescent tablets. The remedy I used against brain tumors in general is 1000-1500 mg of BHT a day, plus carbicarb with potassium and some clove oil.

Ted"

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A : "I have read your article where you indicate certain things to take for NF tumors. Can you please tell me more? Have there been studies done on this? How do we know what to take and how much? My husband has a lot of tumors in his left leg - they are all benign, but they could become cancerous as I'm sure you know can happen with NF. Please help us, we are finding that the doctors in the U.S. are not interested in healing him, but rather with just waiting and seeing if it gets worse and then to operate (which would cause potential paralysis.) Thank you so much in advance for your time. I truly appreciate it."

Replies
Ted from Bangkok, Thailand replies: "What I do know is certain viral cancers tend to stay in certain spinal columns and move along that path. This is why he was affected in the right leg and not the left one. Certain antiviral aromatherapy might help along that path killing the virus (if it was a fungus the color would be black on your skin), so that it can get deactivated.

People often associate zinc with deficiency. Will some people do have zinc deficiency this is true. But I use zinc supplements, especially the salt kinds, such as zinc acetate or zinc chloride as a form of antibiotics. Zinc is well known to be powerful antiviral and hence might be ideal for the treatment of NF.

It must be noted that there is no getting around the fact that whenever you have a tumor, it is extremely necessary to be very strict on sugar intake. This includes avoiding mollasses, cranberry, fruit juices of all kinds with little exception except fruits that are lacking in sugar, fructose, or glucose.

It is also necessary that for treatment of NF, since virus and certain fungus are anaerobic and acid resistant that you alkalize yourself by taking baking soda, the minimum is 1/4 teaspoon of baking soda plus 1/2 glass of water taken three times a day, once in the morning, early afternoon and before bedtime on an empty stomach.

It is extremely necessary that you measure your urinary pH everyday and make sure it stays within the range of 6.5 - 7. If not, take more baking soda. This is the absolute minimum. There are other better formulas that I have developed such as 1/4 teaspoon of baking soda plus 1/4 teaspoon of citric acid, or even 1 whole lemon, and add baking soda until there is no more fizz. The problems with these better formulas is that people won't do it so I have to make it extremely simple and just take baking soda first, zinc acetate supplements, and some selenium if possible. Garlic will help too.

Vitamin B complex is needed to lower or interfere with glucose metabolism of virus, especially vitamin B1, but it is best taken together. Make sure your vitamin B have biotin. Lecithin will lower or normalize sugar too.

There is some research regarding the use of Cesium Chloride which acts in many ways similar to that of potassium chloride. When cesium is replaced with potassium, you don't have to take a lot, but this will be absorbed by the tumor cells and will slowly soften it and then shrink the tumor cells. The reason why I am interested in using cesium chloride for NF is simple, the nerve conduction path uses plenty of potassium /sodium. The cancer (virus) that grows along the nerves seems to have an appetite possibly for potassium and since cesium can replace this, the glucose metabolism will be disturbed when there is uptake of it by the viral cancer or tumor, thus killing them. Aspirin do have anticancer properties as it is also antiviral. So taking this should help.

The safety level of cesium chloride is good and you just need to take, only 100-250 mg/day, I think should be safe. The protocol for cesium chloride for cancer treatment often use much larger amounts and they also use aloe vera oil also. "

11/23/2008: Julie from Bay Area, CA replies: "I also have NF1 and have these ugly tumor bumps on my face. I know there is no cure except having them surgical removed. But do you know of anything I can take to reduce them or some miracle stuff to apply on them?"

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