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Neurofibromatosis (NF) - all types
(C) 2010 by John W. Apsley, MD(E), ND, DC www.doctorapsley.com email: John@DrApsley.com

This is a benign tumor genesis syndrome that affects 1 out of 40,000 children. It often results in deafness, headaches and other cranial nerve abnormalities.

Natural means to intervene against NF would be from multiple angles with prudence.

  • First, we must determine if the gene (22) that is failing to produce the peptide that prevents NF can be upregulated (turned back on to any degree) with select nutrients?
  • Second, would nutrients that augment cell-to-cell recognition enhancement be helpful?
  • Third, would toughing the surround connective tissue with select nutrients reduce growth rate of the neurofibromas?

In concert with my Getting Started tab, I would work with:

1.Natural B-complex vitamins at each meal, but only from food sources, like Rainbow Light (their Man II multi);

2.Noni juice and select enzymes that would survive G.I. transit;11 and

3.Vitamin C with Lysine/Proline/Green Tea and a product that slows angiogenesis – bindweed (VascuStatin from Allergy Research Group).

It appears from over 20 years of anecdotal reports that small doses (1 teaspoon three times daily) of Noni juice for several weeks may slow benign tumor growth, even check it completely. Some women, for example, report their uterine fibroids are dissolved by going slowly in this fashion. Since 2000, many peer-reviewed studies have emerged to support the original empiracle evidence.1, 2 But I would advise caution and go slow.3 As tolerance indicates, some physicians might want to increase dosage SLOWLY (i.e., over many weeks) to 1 tablespoon three or even four times daily. At that point, women have often reported to me that they increased their Noni juice intake to as much as 2 Tblsp twice daily, even up to 2 ounces twice daily. But the thyroid function must also be carefully appraised via the BBATT. Under these circumstances, these women will actually report expulsion of their uterine tumors, which in many cases appear to have shrunk from what x-ray imaging had originally estimated.

I am also fascinated by the fibrinolytic effects (on cerebral issues and tumors in general) of pancreatic enzymes and especially Nattokinase or Lumbrokinase.17 I would wager that most of the NF cases actually have unsuspected fibrinogen abnormalities (clotting issues).14Having said this, some physicians might recommend starting on oral enzyme therapy immediately, always taken according to the label - BUT - on an empty stomach.12, 13Currently, I know of only one laboratory testing for this kind of more obscure clotting disorder which may accompany NF - HEMEX Labs out of Phoenix.A I learned that early this past decade Johns Hopkins was also looking into the more rare blood coagulation disorders that seem to always accompany tumor growth, but I do not know if they currently are still investigating this.

Vitamin C working in concert with nutrients that super-strengthen the connective tissue is also a wise strategy to pursue.4, 5, 6, 7, 8 See: http://www4.dr-rath-foundation.org/NHC/cancer/cellular_solutions.htm. Up to 3 grams of the C daily, or 1 gram per meal along with the other factors mentioned above may be recommended. There is an all-in-one tablet called Epican Forte for convenience. See: http://www.swisscancer.ch/dt_fr/content/orange/pdf/skak/04_rath_e.pdf.

Lysine-dependant receptor site structure is known to be disturbed in many cancers and even NF.9, 10, 15, 16 Thus, lysine supplementation or intervention likely plays a major role to re-establish normal cell to cell signal recognition in these diseases of tumogenesis. If the basal axillary (underarm) temperature were low, I would tend to think this may be a major player; if not, then maybe not at all. Get the book Hypothyroidism Type 2 by Mark Starr, MD, and you will begin to see my logic here. Phenotypic expressions of our genes (and polymorphisms like NF) do poorly in the face of unsuspected hypothyroidism. The problem is that blood tests are simply wholly inadequate in my opinion to identify Type 2 hypothyroidism. For reports on the inadequacies to current blood panels screening for low thyroid conditions, see: http://doctorapsley.com/Hypothyroidism.aspx, and especially after you read that section, see: http://www.holtorfmed.com/topics/thyroid.

If you want to persue this with your physician, have them peruse: http://nahypothyroidism.org/. But note that when you first broach this subject with your physician, he or she is unlikely to make a link as to how or why there would be a connection with NF. With the disturbance in the lysine structure alone, this is implied since thyroid receptor sites use lysine to insure correct hormone interplay. That's why you need to read Starr's book first and perform properly an underarm temperature first thing in the morning and properly for a week or so. I say any Type 2 low thyroid situation would further worsen a phenotypic or polymorphic issue (such as the proteinomic insufficiency issue intrinsic to all NF Types).

I am currently exploring magnetic therapy that has provided some very significant reversals of tumor growth. But these were malignant. It may be useful for benign tumors as well in coordination with the above dietary intervention supplements. See the "Super Hat" at: http://www.polarpowermagnets.com/therapeutic.html.

Lastly clean up the diet, and stop all sweets and soda pop. No microwave cooking either. And read my Getting Started page.

References:

A. See: www.HEMEX.com

___________________________________________

1. Li J, et al., Fermented Noni exudate (fNE): a mediator between immune system and anti-tumor activity.Oncol Rep. 2008 Dec;20(6):1505-9.

2. Hornick CA, Myers A, Sadowska-Krowicka H, Anthony CT, Woltering EA. Inhibition of angiogenic initiation and disruption of newly established human vascular networks by juice from Morinda citrifolia (noni).Angiogenesis. 2003;6(2):143-9.

3. Potterat O, Hamburger M. Morinda citrifolia (Noni) fruit--phytochemistry, pharmacology, safety.Planta Med. 2007 Mar;73(3):191-9. Epub 2007 Feb 7.

4. Shakiba Y, Mostafaie A. Inhibition of corneal neovascularization with a nutrient mixture containing lysine, proline, ascorbic acid, and green tea extract.Arch Med Res. 2007 Oct;38(7):789-91. Epub 2007 Jun 21.

5. P. Gao, et al. HIF-Dependent Antitumorigenic Effect of Antioxidants In Vivo, Cancer Cell 2007;22:230–8.

6. Roomi MW, et al., Inhibitory effect of a mixture containing ascorbic acid, lysine, proline and green tea extract on critical parameters in angiogenesis.Oncol Rep. 2005 Oct;14(4):807-15.

7. Roomi MW, Ivanov V, Kalinovsky T, Niedzwiecki A, Rath M. Effect of ascorbic acid, lysine, proline, and green tea extract on human osteosarcoma cell line MNNG-HOS xenografts in nude mice: evaluation of tumor growth and immunohistochemistry.Med Oncol. 2006;23(3):411-7.

8. Meng XL, et al., Effects of a high molecular mass Convolvulus arvensis extract on tumor growth and angiogenesis.P R Health Sci J. 2002 Dec;21(4):323-8.

9.Cheng SY. Thyroid hormone receptor mutations and disease: beyond thyroid hormone resistance.Trends Endocrinol Metab. 2005 May-Jun;16(4):176-82.

10. Rossin A, et al. Identification of a lysine-rich region of Fas as a raft nanodomain targeting signal necessary for Fas-mediated cell death.Exp Cell Res. 2010 Mar 16. [Epub ahead of print]

11. Li YH, et al., [Effects of absorption enhancers on intestinal absorption of lumbrokinase]. Yao Xue Xue Bao. 2006 Oct;41(10):939-44.

12. Wang C, et al., Structural basis for broad substrate specificity of earthworm fibrinolytic enzyme component A.Biochem Biophys Res Commun. 2004 Dec 17;325(3):877-82.

13. Cooper EL, Ru B, Weng N. Earthworms: sources of antimicrobial and anticancer molecules.Adv Exp Med Biol. 2004;546:359-89.

14. Wang PW, et al., Characterization of plasma protein profiles from patients with neurofibromatosis I.Clin Chim Acta. 2007 May 1;380(1-2):139-44. Epub 2007 Feb 9.

15. Wiesmller L, Wittinghofer A. Expression of the GTPase activating domain of the neurofibromatosis type 1 (NF1) gene in Escherichia coli and role of the conserved lysine residue. J Biol Chem. 1992 May 25;267(15):10207-10.

16. Poullet P, Lin B, Esson K, Tamanoi F. Functional significance of lysine 1423 of neurofibromin and characterization of a second site suppressor which rescues mutations at this residue and suppresses RAS2Val-19-activated phenotypes.Mol Cell Biol. 1994 Jan;14(1):815-21.

17. Ji H, et al., Mechanisms of lumbrokinase in protection of cerebral ischemia.Eur J Pharmacol. 2008 Aug 20;590(1-3):281-9. Epub 2008 Jul 1.