Naturopathic Approach to NF

Possible Naturopathic Approach to Neurofibromatosis (NF)

The following are ideas for a naturopathic or natural approach to managing neurofibromatosis. As always, work with your doctor or qualified healthcare practitioner. For help finding a doctor trained in diet and supplements, see Finding an integrative medicine doctor.

Also see the list of 50+ Natural treatment ideas for Neurofibromatosis for even more things to research.

Summary:

If legal in that state, marijuana/cannabis, with a focus on full-spectrum cannabis oil or cannabis paste, or fresh juiced leaves if available - now legal in Colorado and some people are moving there for treatment (see River Rocks dispensary in Denver for organic marijuana and fresh leaves) See Could Marijuana Cure Cancer, Cannabis paste recipe to make your own.
Nrf2-boosting, NFkB-inhibiting herbs and foods (search online for Nrf2 activator foods) - curcumin, green tea extract, ashwagandha, pterostilbene or resveratrol, bitter melon, etc.
Alkaline diet with alkalizing foods like a teaspoon of Bragg's apple cider vinegar in water (very cheap, only pennies a day), Synergy barley grass powder, green juices (from a good juicer), and low stress
Key things that relate to NF in particular: propolis (regular propolis seems to have helped some people and has many beneficial compounds besides just the CAPE, in case the Bio-30 is too expensive), Duanwood Reishi extract (Hyperion Herbs) for Ras inhibition and overall tonic and anti-tumor, immunomodulatory effects, Vitamin D3, Vitamin K2 (Life Extension Super K or Vitamin D+K drops), Black Seed Oil (for P13K/Akt inhibition)
Paleo, "Bulletproof," low-carb, low-sugar diet (with low meat consumption of grass-fed meats only) with possible intermittent fasting (low insulin, low blood sugar, stimulate autophagy, decrease inflammation)
Low meat consumption (but not necessarily no meat, since meat contains some vitamins that are hard to get otherwise)
Low-dose naltrexone (used for long-term cancer management, inexpensive, basically no side effects after the first week adjusting to it) - (Note: sone people find it is harder to use this along with cannabis, though, so perhaps either LDN OR cannabis)
If needed, photodynamic therapy (photodynamic therapy for NF1, on inspire)
I have yet to see many reports on whether DCA does anything for NF, but if it does that would be nice. Safe if used as directed and not very expensive. See The DCA site. Shown as effective for neuroblastoma, glioblastoma, etc.
Continual self-education about health and new developments: I recommend Chris Kresser, Dave Asprey, Mark Sisson, Chris Beat Cancer, Terry Wahls MD

Diet

Bulletproof Diet - limit mTOR pathway by keeping insulin low, limit mutation-causing mycotoxins in the diet, eat mostly organic, keep insulin low, promote fat-burning state and ketones, anti-tumor diet
Low carb diet - limit insulin - limit mTOR, P13K, and IGF-1 which speed up cell division and tumor progression
Gluten-free diet - limit excess inflammation from gluten, give the body a break from something many people are sensitive to that can increase allergies and systemic inflammation, absorb nutrients from food better (Gluten and wheat impair gut lining in ALL people, not just celiacs - research zonulin and gut permeability)
Avoid sugar except for berries and possibly honey, no processed sugar - limit insulin and blood sugar spikes
Alkaline-forming diet with plenty of greens and small amounts of meat - body pH may impact tumor growth
Possibly casein-free, dairy-free diet. Grass-fed ghee and grass-fed butter might be ok.
Avoid unfermented soy - avoid hormonal and anti-nutrient effects of soy (miso, gluten-free soy sauce, and natto might be alright)
No excessive alcohol - if used, only use in small amounts at a time (less than one drink a day, and not drinking every day) - alcohol can have hormetic effects at low, infrequent levels but depletes glutathione at higher levels
Anti-angiogenesis foods - decrease VEGF - See Eat to Defeat
Autophagy promotion with intermittent fasting - autophagy stimulates cell recycling and can be anti-tumor, anti-mutagenesis, anti-inflammation (adults only)
Broccoli, brussels sprouts, cruciferous vegetables - stimulates p53, antitumor
Natural sources of Vitamin A - inhibit Ras - such as molecularly distilled cod liver oil, with adequate Vitamin D to balance the Vitamin A
Nrf2 activator foods and herbs to increase body's own production of powerful antioxidants- curcumin, ashwagandha, green tea, wild blueberry, wild bilberry, black currant, cherry, raspberry, blackberry, blue corn, resveratrol, cranberry, tart cherry, prune, strawberry, broccoli, onion, tomato, kale, carrot, spinach, rosemary, variety of spices, garlic, cinnamon, hot peppers
Some fairly affordable supplements: Life Extension Green Tea Extract, Vitamin D drops (2 cents per serving), Nature's Way ashwagandha, Doctor's Best Meriva liposomal curcumin, Reishi extract powder

Medicinal foods and supplements:

Alkalization - Alkaline-forming diet with greens and fruits and vegetables, and/or baking soda, TriSalts, aloe vera, apple cider vinegar in moderation (doses available online) to provide nutrients and ingredients to balance body pH, features in many of the testimonials/reports from people who say they saw improvements with NF, cheap treatment used for regular cancers that might cross over somehow, pH may impact mast cells
Propolis capsules and topical cream with propolis extract - PAK inhibitor, activates Nrf2, inhibits TNF-alpha-dependent NFkB activation, could be anti-allergic -- not necessarily Bio 30 or 100, which might be too expensive for long-term use, but some sort of propolis in both capsules and transdermal/cream for absorption of fat-soluble parts of the extract
Duanwood Reishi extract powder - Ras inhibitor, reduces NFkB, reduces TNF-alpha, inhibits downstream mTOR pathway enzymes, activates Nrf2/ARE pathway, adaptogen, stress reduction. Not regular reishi, since you need an extract to get active compounds. Duanwood reishi is grown in a controlled way to avoid heavy metals.
Liposomal Curcumin (Meriva or similar) - tumor suppressing, reduces TNF-alpha, reduces TGF-beta, increases Nrf2 particularly in combination with other Nrf2 activators, reduces NFkB, inhibits mTOR pathway, stimulates p53, reduces VEGF effects. Not regular turmeric, which is not absorbed enough.
Grass-fed undenatured whey protein - boosts glutathione which is a Ras inhibitor and one of the body's primary detoxifying agents, whey supports glutathione production (Can be expensive, might get enough glutathione from Nrf2 activator herbs or from a quality grass-fed whey protein or Isagenix Isalean, without the need to pay more for Immunocal)
Calcium-d-glucarate - improve liver detox by glucuronidation, remove excess hormones particularly estrogen which can be elevated due to estrogenic environmental pollution
Green tea extract (EGCG) - inhibit NFkB and TGF-B, enhance Nrf2, stimulates p21, reduces VEGF, blocks tumorigeneis through a variety of pathways including JAK/STAT, MAPK, P13K/AKT, Wnt, and Notch, anti-angiogenic
Vitamin D3 sublingual drops or transdermal cream for better absorption- often low in NF, anti-tumor, decreases NFkB, inhibits Ras, stimulates p21, anti-inflammatory, anti-cancer
Vitamin K - MK-7 supplement or from grass-fed butter, grass-fed liver - PAK inhibitor, promotes bone and tooth strength, studied by Dr. Maruta, anti-cancer
Quercetin - inhibits Ras, anti-inflammatory, inhibits NFkB, inhibits mTOR, inhibits VEGF
Reduce stress and relax and laugh more, since stress is a potent stimulator of VEGF and angiogenesis
Boswellia - stimulates p21, reduces NFkB, reduces inflammation, can be anti-brain tumor
Rick Simpson Oil or cannabis paste - anti-tumor, anti-proliferative, used for gliomas, has some reviews in the testimonials section, also medical marijuana can be used to reduce pain
Look into Low-Dose Radiation therapy, which turns on body's repair systems, see Night Hawk Minerals
Optimize methylation and glutathione production, ideally by checking detox genetics with 23andme and using KnowYourGenetics.com for personalized recommendations on which detox supports to add first.

Other things of interest:

Milk thistle - boosts NRf2, improves detoxification, reduces VEGF
Burdock - detoxifying and inhibits the mutation of the p53 gene, helping to block an important step in NF tumorigenesis - anti-mutation
Ashwagandha-Nrf2 activator, promotes p53, adaptogen to help body cope with stress
Raspberries, ellagic acid - inhibits p53 mutations to keep p53 working to suppress tumorigenesis
Liposomal magnesium or magnesium glycinate or magnesium citrate - Magnesium levels are low in most people. Magnesium is stress-relieving, aids detoxification, reduces cancer risk, reduces NFkB activation (magnesium deficiency can cause inflammation) - see Natural Calm
Black seed oil - anti-inflammatory, anti-tumor
Bitter melon - cucurbitacin from bitter melon was found to slow NF tumor growth, Nrf2 activator, keeps blood sugar low
Gerson therapy, with vegetable juices and coffee enemas - boosts glutathione, coffee enemas studied in clinical trial
Organic tart cherry extract - natural COX-2 inhibitor without as many side effects as NSAID drugs
Chinese skullcap - anti-angiogenesis, anti-inflammatory, GSK-3B inhibitor
Low-dose naltrexone - anti-cancer, used as long-term maintenance for some people with cancer, anti-inflammatory, not studied in NF yet, but cheap and highly effective for many people with cancer or autoimmune conditions. see LDN and cancer. Might interfere with effects of cannabis paste or cannabis oil, so perhaps pick one or the other

Rotation and breaks:
Rotation is important (not using the same thing every day) since the body can develop sensitivities to anything that is used daily. I personally do not use any supplements all the time. I give them breaks whether taking the weekends off, or taking a week off a month from something, or taking something for a few months and then taking a break for a month. This also keeps the cost down since then you're only taking something like liposomal curcumin 75% of the time, rather than 100% of the time, but you still get many of the benefits of taking it.

Naturopathic approach to cancer:
For comparison, here is a very comprehensive document on a naturopathic approach to cancer (below). Although NF is not cancer, there are many areas of overlap.I highly recommend reading this document for information.

Cancer - Diet, Nutrition, and Botanical Support
Quote from the person who wrote this article (above): "The reason I put this information together is that I feel the cancer patient and caretaker are often not aware of all the complementary and alternative things you can do nutritionally to support your health when you have cancer."
He goes through the body's many tumor prevention pathways and how to support them with food and herbs.

Note: With the exception of Propolis cream and extract, which are somewhat specific to NF approaches, many of these are things that people do for a variety of health conditions or to support overall health, weight management, anti-aging, diabetes prevention, cancer prevention, or other health goals.

Disclaimer:
This information is provided for general educational information only. The information provided is not intended, nor should it be used as, a substitute for medical advice, diagnosis or treatment.

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