Cure for Neurofibromotisis(nf1) Aka Vonricklinghausens?

Few question for Neurofibromatosis:

I have very mild condition of NF1 (few tumors with freckles), few days back I was diagnosed with low anemia(blood count is 8) and low weight. I was drinking ensure for gaining weight and stopped as I could notice few tumours growing on hand. I am on vegetarian diet incluing dairy products.

A week back I started taking Black strap molasses with orange juice for iron content..Is it good for me?

How do gain weight and increase my iron intake. Should I stop intaking Black starp molasses?..
Is there any remedy for caf- spots? I took skin laser surgey a year back, but was not that helpful?
Is there anything I could do for reducing tumour growth.

Pl note:- Iam 30 year old lady

Hello, I wanted to start this letter by thanking all of you for your questions and answer posts.

I have a friend that has NF1, borderline NF2. He's riddled with tumors, and has had several surgeies, including the removal of a large part of his intestines. He's on diphenoxylate/atropine for severe diarrhea, and he gets Vitamin B shots. He has severe pain whenever he eats.

We're trying to, at the least, prepare foods for him that will be tolerable. So far we see he needs little sugar and lots of alkaline foods, and it makes sense. Is there anything else we can do to make him comfortable when he visits us? Is there any other suggestions you'd like us to pass on to him?

Thank you all for your time and ideas.

Ted,

I am dealing with above symptoms..nf1 with anemia..can I start taking..

Zinc acetate 25 mg. taken about twice or three times weekly for two months. Selenium supplements, 200 mcg, taken 3 times a week will help with skin condition And you had advised abt taking brewer's yeast 10-20 tablets per day, how mg

Should I stop in taking blackstrap molasses?

Sorry to take a lot of time to answer. I have to give it a lot of thought and information isn't accessible either.

"Has anyone known of a cure/remedy for pain in the fingers/toes etc associated with Neurofibromotisis(NF1) aka VonRicklinghausens?"

Yes. Understand that NF1 responds best to alkalization remedy. A dairy may be an anti nutrient when taking with other foods. NF behavior and it's remission responds very similarly like cancer tumors. If a tumors or growth or polyps exist, a sanguinaria canadesis (bloodroot tincture) usually 40% in ethyl alcohol (consumable alcohol same as in vodka) is taken drops a day to reduce the growth fairly quickly. It's taken a couple of drops such as 3 drops three times a day. Magnesium citrate (or magnesium chloride) is still important, that's 500 mg. B complex on ocassional helps, especially if some loss of apetite or inability to eat.

If blood circulation is a problem where clots form then some 25 mg of disodium EDTA is taken. I suspect heavy metals, chlorine, fluorine and aspartame to worsen the condition and is best avoided. On the other hand cellular communications is important so now unusual growth would take place. To enchance this, I believe 1 teaspoon of sea salt (moist type, non white), taken 3 times a day. This is the main idea of NF in general. There is remission in certain chemotherapy and the use of alternative remedy that uses this approach. There is one

Zinc acetate 25 mg. taken about twice or three times weekly for two months. Selenium supplements, 200 mcg, taken 3 times a week will help with skin condition And you had advised abt taking brewer's yeast 10-20 tablets per day, how mg.

A brewer's yeast requires larger dose such as 20 tablets of 250 mg a day.

Black strap molasses can continued to be taken provided it's very diluted with water so it won't make any change in blood sugar. I would try two tablespoon of blackstrap molasses per liter of water. The sugar solution is so diluted here, it won't make much of a difference.

I was diagnosed with low anemia(blood count is 8) and low weight.

A low anemia blood count is best handled with 1/8 teaspoon of chlorophyll powder with some vitamin C, and perhaps iron gluconate. Quite often the diet has more then enough iron, but the intestines can't absorb and perhaps enema detox may help clean it. In any event milk of magnesia (without aluminum) laxative is one I would use, or a simpler 1 teaspoon baking soda 1 teaspoon sea salt - that's a weak laxative effect just to resolve simpler constipation, or a stronger one at 1 tablespoon of each, which I only use for more serious conditions. In any event, a stool takes time to hydrate before it becomes soft enough along with 2 glasses of water, mixed into the sea salt and baking soda. Chlorophyll supplement, even without iron usually takes about a week to restore anemia conditions. To restore weight, usually vitamin D3 20,000 i.u. to 100,000 i.u. a day with magnesium for about a month's period with 2 or 3 of not taking it each week. The vitamin D will give weight gain as also some whey protein, such as 1 tablespoon with plenty of water taken in the morning might also help. But if it cause blood to be sticky (such as varicose veins), then vitamin E and aspirin is needed. Proteins diet tend to do this. Glutamine also helps some weight gain. A safer means then protein, without the associated problems is omega 3 and fish is added to the diet along with vegetarian diets. Preferably avoiding fried foods, yogurt is also to be avoided (they encourage blood clotting and circulation). It should be noted that Neurofibromatosis tumors tend to get larger whenver circulation is restricted, blood becomes sticky, from too much protein foods, sugar, and oily foods. Hence, fish oil three times a week (250 mg), and disodium EDTA chelation, tends to reduce or at least stabilized without it getting larger. Only bloodroot tincture is the only know method for me to reduce polyps by any appreciable size, such as 1/2 the size for polyps in about 4 days, thereby the size gets proportionally smaller and smaller until it's gone. I suspect it's a viral condition that is changing the genes that causes the mutation and these viral can be passed onto in the nucleus of the cells, rather then a pure genetically caused NF conditions in generaly. Hence, possibility exists that BHT 1500 mg a day may suppressed their viral activity to worsen the conditions.

It must be known that drinking any protein drinks will result in sticky blood and tumor growth. Always monitor the blood flow condition and a varicose doesn't or isn't seen, or no veins popping out. It's a sign of circulation problems BEFORE a tumor growth goes underway. Hence, sugar, vegetable oils, and too much protein encourage their growth. Blood thinners, such as aspirin, disodium EDTA, will prevent their growth. Exposure to chlorinated water especially shower, always brings the pain and weakness after the shower and NF1 attacks is likely after a shower too, as well as growth to some extent since chlorine tends to cause blood clumping. It is therefore helpful to add one grain of sodium thiosulfate in one liter of water, to not only neutralize the chlorine, but also of oxidative chemicals assoicated inside the body's liver and blood.

So far we see he needs little sugar and lots of alkaline foods, and it makes sense. Is there anything else we can do to make him comfortable when he visits us? Is there any other suggestions you'd like

Sometimes its a pain and sometimes there is a loss of appetite. yes B complex shots helps. Usually to reduce the pain, softer foods is used. I had one person who had to be given through enema to get the nutrients in. Most foods that won't hurt includes fish and mashed vegetables. The issue is to reduce pain and more alkalization helps reduce pain. Pain comes from acid in a tumor. Other supplements that reduces pain includes magnesium supplements, powdered form, such as magnesium citrate 500 mg x 3, and perhaps iodine supplements such as kelp, or potassium iodide crushed tablets. There is some case history of people responding to retinoic acid, but that I haven't tried yet, so I can't be sure of that.

The primary approach will always be the use of EDTA (disodium EDTA or more agressive tetrasodium EDTA) such as 10 mg or 25 mg dissolved in a glass of water, once a day or perhaps once every two days to prevent clotting or thickness of blood. Blood needs to be thin or tumors form when circulation becomes restricted. I am also giving a look on 0.1% solution of methylene blue, given at a dose of only 2 drops twice a day that seems to raise the body's immune system, as this seems to be supportive of mitochrondrial function and energy level, which means is given at extremely low dose only in the morning and afternoon period. B complex and vitamin C seems to be required usually since C is involved in iron utilization and b complex helps the energy level. Alkalization is always the basic remedy but a stronger form of alkalization appears to be 1/2 teaspoon of sodium citrate plus 1/4 teaspoon of potassium citrate in 1/2 glass of water twice or three times a day. A weaker solution is possible such as sodium bicarbonate and potassium bicarbonate of similar dose.

I am sure there are other things in my mind as there are so many issues here that I forgot here. So just email me!

Ted"

12/16/2008: Lucky from CA, USA replies: "Thanks a lot Ted for the remedies.I am planning on starting the remedies you had mentioned above from next week. There is a lot of information, but to a person like me who is medically ignorant it's confusing. I would like to double check with you again, before starting the remedies you had mentioned.

For Anemia: - I will dilute Blackstrap Molasses in 1 lt water. Actually I started taking it from past three weeks, but could see some positive results hair growth, nail thickening ...etc

For Restoring weight: - I should use Vitamin D3 (20,000 i.u to 100,000 iu) + magnesium chloride 500mg tablets per day..(I will buy from drug store)

I am currently taking Brewer's yeast (6 to 7 ) tablets .. I will increase the dose 20

I am also taking Baking powder (1/4 spoon), apple cider vinegar (2 spoons), lemon juice in large glass of water daily twice a day from past 5 days. I could see some visible difference like, lightening of NF1-freckles ( I took laser therapy for freckles a year back-which left large marks on my skin)-I am so happy noticing them changing color.

Currently on Alkaline Vegetarian diet..Please let me know if I need to add anything to my NF1 diet.

Thanks a lot for your time.

Did you ever find a cure for the pain and/or tumors?