"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."
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
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.
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?"
08/30/2012: Tonya from Greenville, Nc replies: "My daughter also has NF1... I want to help her so bad, she is 9 years old. I wish there was a cure for this!"
03/19/2013: Teresa from Omaha, Ne, United States: "I have Neurofibromatosis and from this I have brown spots all over my body and I am getting small tumors on my body. I have read all the information on your website about this and there is so much to remember What I want to know what would be the best thing to take to get rid of there tumors inside and outside of my body. Please help me. I have been looking for an answer. Teresa"
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."
01/06/2013: Kyle P. from Philly replies: "I also have NF1, im a 20 year old male. My condition has gotten worse since I was younger... Maybe cause I picked up a few nasty habbits like drinking and smoking. I work on my feet everyday and it takes a toll on my body. My flexibility is bad and I'm in pain a lot 24/7 meds don't always help."
05/15/2013: Teresa Larsen from Omaha, Nebraska Usa: "I was wondering what is the best remedy to user for Neurofibromatosis? There are so many different remedies to use and I don't know what to do."
11/24/2012: Tania from Funchal, Madeira, Portugal: "Hello, I've been exploring your site and found it very interesting. I have a 12 week old daughter with several cafe au lait spots. She is suspected to have NF1. We are aware of the several possible consequences of the disease and would like to know what can we do to improve her immunitary system in order to minimize or even prevent some possible tumor growth, if it occurs.
She is currently being breastfed, and we would like to know if you recommend something to improve my immune system and therefore improve hers as long as she is breastfed.
Thank you in advance and hope to hear from you soon.
Best regards, Lisa"Replies
12/24/2012: Jen from Northern California, Ca replies: "Since NF is genetic or a spontaneous mutation and people are born with it, there isn't much you can do to "prevent" future problems. Although, I am a firm believer that nutrition plays a huge part in everything that goes on in our bodies.
Your daughter is only a few months old, the best thing you can do is get an excellent doctor who specializes in NF. I have NF, as a child I had the BEST Neuro Surgeon in the world (Dr. Michael Edwards in Ca.). If you can get him, you will love him.
Now, as an adult... With employee medical coverage, I'm lucky if I get annual tests (MRI scans. etc.) to see if all is well. I have most of my tumors inside my body... And quite a few on my skin. Thankfully, I'm not covered with them though. I've had many removed and will continue to do so as long as I trust the DR. It's hard going from the BEST Dr. to Drs. that don't care.
I've always heard that you either have problems with NF as a child or the problems start as an adult. I can't really tell the difference as the problems just seem different.
I'll pray that your daughter has the mild type of NF. The type that never gives her any problems."
07/10/2012: Nida from Lucknow, Uttar Pradesh: "Hi, I have neurofibroma which was surgically removed. Now again, slight pain occured. I got diagnosed and its again there on d10-d12 spinal nerves. If it could be cured by medicine please let me know."
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?"
01/13/2013: Lisa from Johannesburg, South Africa replies: "I am also affected by this condition called neurofibromatosis and it has affected my life in a very negative way until I went to see Dr. Kam Singh at his private clinic on (17, Allendale Road Leicester, England 0116-270-9141) and he agreed to treat me. Dr Singh and I experienced different ways of removing these lumps and then we come with a technique which was perfect. I had over 500 of these lumps removed and I was happy with my appearance as I was no longer being covered from head to toe with multiply lumps on my skin. (These were all being tumors of the skin nerve).
Dr Singh has developed a new technique which may go on to benefit many other people like myself who has suffered this, very visible stigmata of neurofibromatosis. I believe that those who have the condition called neurofibromatosis should be aware that there is a new technique to have the tumors removed than that, which is currently being used. I have contacted the Neurofibromatosis Association but I was told that because they haven't heard of this treatment they cannot recommend it or advertise it but it worked for me. I have also spoke to Dr's about it but they don't seem interested.
This treatment was not about me having to take any medication but Dr Singh had the tumors removed. The tumors are normally remove is by having them cut out and so on.... But Dr Singh has developed a new treatment and he would often remove about 40 of these tumors in 20 minutes. If I was still in England I would still see him and would have control over this condition.
I am now back in South Africa which means I don't see Dr Singh. Once again I find living with this condition to be really hard. The problem with neurofibromatosis is that there isn't a cure. So although Dr Singh had removed most of these lumps, others have appeared on other areas of my skin. When I was in Dr Singh's care I felt in control over my condition and it felt good."
03/13/2013: Wim from Haaksbergen, The Netherlands replies: "Lisa from Johannesburg 1/13/2013 has described her positive experiences with a new treatment of NF tumors in Leicester GB. My question is, what is new in this treatment from Dr. Singh? I am very interested in it, because my son has NF1 and is seeking for the best treatment there is. I hope Lisa will answer me! Thank you very much."
04/21/2013: Millie from London, Uk replies: "Seems like one big repetitive advertisement for Dr Singh with no helpful information. Hopefully I am wrong in my analysis."
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!"
07/10/2012: Kotipup from Landenberg, Pa replies: "To Woody - I saw your thread was from 2010, but I wanted to reply because my daughter also has NF1 and MoyaMoya. She also has optic gliomas. We give her propolis for her neurofibromas, and Ruta6 and CalPhos for the gliomas. Daphne's STAMCA surgeries for Moyamoya went well (she had them when she was 15 months old); however, now she is 8 and the left side has become narrowed again. We're waiting to hear from her Neurosurgeon about whether he wants to do anything. Daphne also suffered two strokes before her Moyamoya was diagnosed. I hope your son is doing OK. Dealing with severe NF is very difficult and emotional. Email me at moyer305(at)comcast. net if you want to touch base."
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??
EC: For those unfamiliar with Café au lait spots:
"Café au lait spots or Café au lait macules are pigmented birthmarks. 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/CafÃ©_au_lait_spot
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?
[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."
12/24/2012: Jen from Northern California, Ca replies: "I have NF too. A Dr. told me that "Red Meeker" is known to shrink tumors. I can't find it at any stores though. I'm going to try to get it online. Thanks for the A, C, & E vitamin info. I had no idea."
Supplements and Dietary Considerations
[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. :-)"
03/08/2013: Opo_tahu from Somerset, Ky replies: "We that have NF is also prone to have a vitamin D deficiency as well... I read this and had my levels checked and was low on D, All my B levels..
Kinda odd here we have a lower D level but yet the sun can cause these tumors to pop out??? Hmmmm"
03/09/2013: Louwrence from Rustenburg, North West, South Africa replies: "Hi Opo, Sun does not cause skin cancer, it is caused by what you put in your mouth like hydrogenated oils & only then the sun becomes a problem. The sun is your friend not your enemy, that is why it is worshiped, your whole life here on earth depends on the sun."
04/20/2013: Sarahshope from Michigan replies: "My daughter has NF1 and has had her left eye removed due to an optic glioma. She also has a brain stem glioma. She has one plexi on her shoulder which is being watched.
Vitamin D is very good. She takes 2000 mg, a day, plus curcumin and alpha lipoic acid. On her last MRI, April 10, 2013 the optic glioma on her good eye was gone!!!
This is a rare happening, but it does happen. I find a lot of negativity here. Being pro active and knowledgable about your own condition and seeking answers yourself is the best way to handle your problems with NF. Do NOT count on the medical community for all the answers. Research and research......."
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."
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. ***
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. "
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."
[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."