Neurofibromatosis

Discuss autism diets and biomedical treatments of autism.

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FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Neurofibromatosis

Postby FatherOf2 » Sat Aug 05, 2017 5:21 pm

We visited a new neurologist yesterday. She examined my son's skin and noticed several patchy birthmarks. She suggested possible neurofibromatosis. My son had 5 such spots. If the number is 6 and above (each spot has to be larger than 5mm), then the official diagnosis of NF is made based on overall symptoms. Since my son has abnormal EEG and developmental delays, NF might be the underlying problem behind his autism, which is very sad because it is not curable, gets worse over time, and leads to reduced life expectancy. Next we need check his MRI to make sure that there are no tumors. Tumors have to be removed surgically. Natural treatments are pretty much the same as for cancer patients: boosting immune system, reducing inflammation, etc. Has anybody checked for NF or heard of it?

Here are how the spots look like: https://en.wikipedia.org/wiki/Caf%C3%A9_au_lait_spot

Nikkie111
Posts: 320
Joined: Thu Sep 24, 2015 6:26 am

Re: Neurofibromatosis

Postby Nikkie111 » Sun Aug 06, 2017 12:04 am

Yes it's mast cell issue and can be managed ! Sad that she didn't think so
I ll try to find the links for you

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Neurofibromatosis

Postby FatherOf2 » Sun Aug 06, 2017 12:51 am

Epiphany had a nice article about PAK1 inhibitors: https://epiphanyasd.blogspot.com/2014/05/pak-inhibitors-not-just-for-cancer.html
"PAKs are a family of enzymes in the body. They are implicated in many biological processes, one of which is cancer. The chemicals that reduce the activity of these enzymes are called PAK inhibitors... PAK1 appears to play a central role in lost brain cell function in Schizophrenia, Fragile X, Shank 3 and Neurofibromatosis Type 1 (NF1)... PAK2 plays a role in stabilizing mast cells, whereas PAK1 plays an opposing role in making them degranulate. When this happens histamines, IL-6 and other inflammatory agents are released. So PAK2 does some good."

Natural things that inhibit PAK1 and prevent NF1 tumors from growing are (from http://www.ddtjournal.com/action/downloaddoc.php?docid=482 and http://www.naturalneurofibromatosis.com/50-natural-treatment-ideas-for-nf.html):

1. Propolis (stuff that bees use to build their beehive and protect it from viruses, bacteria and fungi). BIO30 from New Zealand and Brazilian Green Propolis are mentioned.
2. Sichuan pepper
3. Bitter melon from China or Okinawa
4. Curcumin (Turmeric)
5. Berberine (Goldenseal)
6. Reishi mushrooms
7. Myricetin (inhibits PAK1 by abrogating Ras-mediated signaling by decelerating Wnt signaling, stabilizes mast cells, reduces TNF-alpha and IL-6 https://www.ncbi.nlm.nih.gov/pubmed/26104578)
8. Increase glutathione (a Ras inhibitor and a potent detoxifying agent to decrease mutagenic toxins)

Mutation that leads to NF is rs137854552 CT. 23&me didn't check for it.
Last edited by FatherOf2 on Sun Aug 06, 2017 5:25 pm, edited 4 times in total.

Nikkie111
Posts: 320
Joined: Thu Sep 24, 2015 6:26 am

Re: Neurofibromatosis

Postby Nikkie111 » Sun Aug 06, 2017 4:05 am

Good one on PAK, NF, mast cells as mentioned earlier and the bee propolis you mentioned

https://epiphanyasd.blogspot.co.uk/2014 ... r.html?m=1

I give the Brazilian green propolis when they have an active virus and it pretty much stops it there and then but it tastes absolutely disgusting!

FatherOf2
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Joined: Mon Mar 11, 2013 1:37 am

Re: Neurofibromatosis

Postby FatherOf2 » Sun Aug 06, 2017 12:47 pm

Nikkie111 wrote:...I give the Brazilian green propolis when they have an active virus and it pretty much stops it there and then but it tastes absolutely disgusting!

What brand of Brazilian green propolis do you use?

Nikkie111
Posts: 320
Joined: Thu Sep 24, 2015 6:26 am

Re: Neurofibromatosis

Postby Nikkie111 » Sun Aug 06, 2017 2:03 pm

FatherOf2 wrote:
Nikkie111 wrote:...I give the Brazilian green propolis when they have an active virus and it pretty much stops it there and then but it tastes absolutely disgusting!

What brand of Brazilian green propolis do you use?


This one

https://www.amazon.co.uk/Immunity-Pon-L ... n+propolis

I ll get it again, your article made me research the Brazilian green propolis ,mast cells and NF and it does come back that it blocks PAK helps with mast cells etc ...fantastic tip thank you!

Marya
Posts: 157
Joined: Tue Feb 21, 2017 4:14 pm

Re: Neurofibromatosis

Postby Marya » Sun Aug 06, 2017 4:20 pm

Thanks for bringing this up fatherof2. I had a look at it and I liked this;
"PAK1 inhibitor can cross the blood brain barrier (BBB), what works for cancer, is likely to have an effect in all the mentioned brain conditions, including autism."

This is a good point for therapy. At least now you know your son health issue could be what is called Autism with spots. And treatment would be easier.

From that article, I concluded that anti inflammation, anti oxidants and mast cells stabilizers would control the symptoms somehow of those disorders. However, some mast cells stabilizer can interfere with neurotransmitters, so choose them with caution would be a good idea.

By the way, my brother illness seems that getting better with anti oxidants( NAC) and anti inflammation( omega3) he is taking inulin as well and probiotics just in case there is an issue in his gut. But will stop inulin probably in a month to avoid feeding bad bacteria. I'm thinking to add mast cells stabilizer but I need to add more anti-oxidants before like selenium and vitamin C.

FatherOf2
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Joined: Mon Mar 11, 2013 1:37 am

Re: Neurofibromatosis

Postby FatherOf2 » Sun Aug 06, 2017 4:21 pm

Thanks, Nikkie. I just ordered some Brazilian Green Propolis. I doubt that I will be using it on a continuous basis, only as a treatment to colds. I didn't know about connection between NF and mast cells. It explains why my son reacts to mast cell stabilizers so well. Thank you for mentioning it. I did some further reading.

The NF1 gene provides instructions for making a protein called neurofibromin. This protein is produced in many types of cells, including nerve cells and specialized cells called oligodendrocytes and Schwann cells that surround nerves. These specialized cells form myelin sheaths, which are the fatty coverings that insulate and protect certain nerve cells. Neurofibromin acts as a tumor suppressor protein. Tumor suppressors normally prevent cells from growing and dividing too rapidly or in an uncontrolled way. This protein appears to prevent cell overgrowth by turning off another protein (called RAS) that stimulates cell growth and division. Patients with neurofibromatosis type 1 (NF1) are deficient in neurofibromin. As a result, they develop numerous neurofibromas, which contain many inflammatory mast cells that contribute to tumor formation. RAS hyperactivation is the molecular basis of NF1, and it has been demonstrated that reduction of RAS signaling can correct NF1.

Marya, you need to avoid NGF activators because NGF activates mast cells, but BDNF doesn't. So, you need to focus on BDNF activators, which also stabilize mast cells. Lion Mane mushrooms activate NGF and may not work well if you have problem with overactivated mast cells. By the way, schizophrenia is one of the target conditions that is investigated for PAK1 inhibitors.

Marya
Posts: 157
Joined: Tue Feb 21, 2017 4:14 pm

Re: Neurofibromatosis

Postby Marya » Mon Aug 07, 2017 2:41 am

FatherOf2 wrote:Marya, you need to avoid NGF activators because NGF activates mast cells, but BDNF doesn't. So, you need to focus on BDNF activators, which also stabilize mast cells. Lion Mane mushrooms activate NGF and may not work well if you have problem with overactivated mast cells. By the way, schizophrenia is one of the target conditions that is investigated for PAK1 inhibitors.

OMG :( Lion's mane was the last hope for me to cure from this illness!!
Fatherof2, how did you find about NGF activators and mast cells?
I was looking forward to take Lion's mane because it stimulate neuron cells to grow and as you know our brain die every now and then so needs nerve growth activators othrwise we would suffer from Alzhaimer! :( I haven't came across any supplement that help neuron cells to grow except Lion's mane so I will pray that work with me.

Nikkie111
Posts: 320
Joined: Thu Sep 24, 2015 6:26 am

Re: Neurofibromatosis

Postby Nikkie111 » Mon Aug 07, 2017 3:18 am

Marya wrote:
FatherOf2 wrote:Marya, you need to avoid NGF activators because NGF activates mast cells, but BDNF doesn't. So, you need to focus on BDNF activators, which also stabilize mast cells. Lion Mane mushrooms activate NGF and may not work well if you have problem with overactivated mast cells. By the way, schizophrenia is one of the target conditions that is investigated for PAK1 inhibitors.

OMG :( Lion's mane was the last hope for me to cure from this illness!!
Fatherof2, how did you find about NGF activators and mast cells?
I was looking forward to take Lion's mane because it stimulate neuron cells to grow and as you know our brain die every now and then so needs nerve growth activators othrwise we would suffer from Alzhaimer! :( I haven't came across any supplement that help neuron cells to grow except Lion's mane so I will pray that work with me.

Maybe take it for short period of times and with something that stabilises mast cells like the ones mentioned here
https://selfhacked.com/blog/deal-histam ... e_reducers

Nikkie111
Posts: 320
Joined: Thu Sep 24, 2015 6:26 am

Re: Neurofibromatosis

Postby Nikkie111 » Mon Aug 07, 2017 3:29 am

Marya wrote:
FatherOf2 wrote:Marya, you need to avoid NGF activators because NGF activates mast cells, but BDNF doesn't. So, you need to focus on BDNF activators, which also stabilize mast cells. Lion Mane mushrooms activate NGF and may not work well if you have problem with overactivated mast cells. By the way, schizophrenia is one of the target conditions that is investigated for PAK1 inhibitors.

OMG :( Lion's mane was the last hope for me to cure from this illness!!
Fatherof2, how did you find about NGF activators and mast cells?
I was looking forward to take Lion's mane because it stimulate neuron cells to grow and as you know our brain die every now and then so needs nerve growth activators othrwise we would suffer from Alzhaimer! :( I haven't came across any supplement that help neuron cells to grow except Lion's mane so I will pray that work with me.

There is one more herb that does the same thing Chinese senega root but buhner says not to take for more than 30 says

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Neurofibromatosis

Postby FatherOf2 » Mon Aug 07, 2017 9:18 am

I scanned clinical trials related to neurofibromatosis. Most of them use drugs for cancer, like mTOR inhibitors. There was one about Lamotrigine. The description was interesting:

Cognitive deficits in the autosomal dominant disorder Neurofibromatosis type 1 (NF1) typically consist of a lower than average IQ, impaired visual-spatial learning, attention problems and impaired executive functioning. These deficits have a substantial influence on the daily life of pediatric and adolescent individuals with NF1. One of the key underlying mechanisms of these deficits is an increased gamma-aminobutyric acid (GABA)-ergic inhibition and a subsequent decrease in synaptic plasticity. The ENCORE laboratory has recently shown that loss of the NF1-gene is associated with attenuated function of the hyperpolarization-activated cyclic nucleotide-gated channel 1 (HCN1). These channels, enriched in membranes of inhibitory interneurons, play an important role in the pathophysiology underlying the cognitive deficits in NF1. Lamotrigine, an HCN-agonist, restored function of HCN1, together with the electrophysiological and visual-spatial learning deficits in Nf1-mice. Thus, lamotrigine is a novel candidate drug for treating cognitive deficits associated with NF1.

The target dose for children 12-18yo is 100mg 2x/day. My son is already taking Lamotrigine (50mg 2x/day) to stabilize his EEG and reduce mood swings. It is nice to know that it is doing something positive for NF1. Although it is hard for me to believe that my son suffers from increased GABA inhibition.

I also searched for natural mTOR inhibitors and found several in these articles: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3775843/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980558/: apigenin, curcumin, fisetin, DIM, quercetin (also Ras inhibitor), resveratrol, γ-tocotrienol, EGCG, genistein. Interestingly, many of these substances also stabilize mast cells such as apigenin. curcumin, quercetin, fisetin, resveratrol, EGCG, genistein. It tells me about the importance of eating fruits and vegetables, which my son doesn't eat due to his pickiness.

miraclev25
Posts: 36
Joined: Thu Mar 16, 2017 7:42 am

Re: Neurofibromatosis

Postby miraclev25 » Mon Aug 07, 2017 11:50 am

i remember a birthmark in my son abdomen, will check and get back.

Marya
Posts: 157
Joined: Tue Feb 21, 2017 4:14 pm

Re: Neurofibromatosis

Postby Marya » Mon Aug 07, 2017 6:59 pm

Nikkie111 wrote:Maybe take it for short period of times and with something that stabilises mast cells like the ones mentioned here
https://selfhacked.com/blog/deal-histam ... e_reducers

I may try this trick. Thanks Nikkie! I know that you are giving Lion's mane to your son. Do you give him anything to stabilises mast cells? And for how long have you been giving Lion's mane?


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