Neurofibromatosis and Keto Info?


(Ron) #1

I have a good friend whose wife is suffering with pain, dizziness, and balance issues from a lazer knife surgery to resolve an issue called Neurofibromatosis type 2.The doctors suggest that since the tumor is benign that this is something she is going to have to deal with (although they have her on a therapy regime to supposedly stop any progression). She feels that the therapy is not helping. They were recently persuaded (from a non-professional) to start with Nutrisystem as a means to help.
I am asking from this great Keto Community that I have grown to value, for any information, personal or acquaintance experience and science that will give me the ability to educate them of how the Keto Lifestyle might benefit her or at least be better that the current diet they are attempting.
Thank You so much for considerations! :hugs:


(Ron) #2

One more time for a little more exposure. Thank You.


(Rob) #3

From a bit of reading, NF2 sounds like a right bugger! I couldn’t find the main thing I was looking for which is are NF2 tumors glucose fed? What else feeds them?
I know NF2 is classed as a genetically driven disease but many cancers have been blamed on cell mutations when it is probably more metabolically driven in most cases.

If the tumors are glucose (and glutamine) fed, then the keto for cancer protocols may well be applicable - high fat, low protein + supplements, etc. Listen to the 2KD podcast(s) with Dr Seyfried and I think there was one with Dr Winters for more detail. If they are ketone fed, that would be bad but very few are. NF1 (different) seems to be related to glucose metabolism but in a way I don’t really understand - it seems to suggest that NF1 increases glucose metabolism (reducing T2DM likelihood) but it may also suggest that the tumors are using glucose? I can’t tell quickly and I’m not sure I would understand if I looked for longer. :flushed:

Advice to start Nutrisystem can only be based on the vague idea that losing weight improves health. That is almost certainly BS as we’ve all learned in understanding the hormonal model of metabolism. That said, maybe lowering inflammation via keto will be positive - probably can’t hurt.


(Jay AM) #4

I think Rob covered it in about the same detail that I’d be able to. I did come across a cited article about tumor growth being based on genetics that I’ve put below as well as a blog with NF. I’m of the opinion that keto can do a great many things. Unfortunately, like many of the less common diseases, keto’s effects don’t seem to have been published in relation to NF2 with great studies. But, it doesn’t seem that NF tumors are ketone fed at least from my reading. Maybe the blog will be of some use.


(Bunny) #5

Anti-inflammatory diet? i.e. therapeutic ketogenic diet LCHF?


(Ron) #6

Rob,
Thank You for the time you have given researching this. Like you I was finding a lack of information available and could only find the genetic tumor answers. Already knowing this from being associated with the victim I is what prompted me to look for possible alternative directions that might be being overlooked (or ignored as we all know sometimes happens) by the medical doctors. While I don’t know if the tumors could ever be reduced or even eliminated, maybe the possibility of slowing progression in growth could be achieved even more, or in the least a way to help her with the pain and or symptoms that she is going through that’s associated with this condition. Your suggestions are valid and greatly appreciated.


(Ron) #7

Jay,
Thank You as well. The links provided will definitely help in my quest of proposal for the Keto lifestyle. :hugs:


(Cywgdave) #8

For what it’s worth, the following youtube video may be of help, if folks remember the recent Dr/ Thomas Seyfreid episode of the 2KD podcast, this is one of the clinics and Dr’s that Seyfreid is working with. It has images of some of the cases that Dr. Seyfreid mentioned in the episode. They are jaw-dropping. Not certain much is applicable to NF but if one is trying to find evidence for the effectiveness of a ketogenic diet with regard to tumors then this is something to watch.

I had initially stripped the audio out as I wasn’t aware is was done in video format and had to go watch it based on the comments fro Dr. Slocum. The success they are having is absolutely astounding.

Even for others who may not have a direct interest in NF, please put this on your “watch later” list. It will be well worth your time regardless of how much of an impact cancer has had in your life.


(Ron) #9

@cywgdave
Thank you so much!


(Cywgdave) #10

You are welcome. I’m trying to help with what I can. If by chance your friends wife tries it and benefits, can you post back here and let us know? My wife has supported a fundraiser for our local NF group a couple of times and if someone has any success then maybe we can get it out to others.


(Ron) #11

Will do!


(Charmaine Sauer) #12

I’m brand new here and just need more input/advice/info about keto and neurofibromatosis type 1. I’m a 63 yr old female with NF1 and multiple other serious health problems. I have multiple tumors and other issues in my spine… Also have a history of 2 pheochromocytomas, so now have Addison’s disease also because of no adrenals. Too much other history to list here (it would be boring!) Too many tumors to count, lots of constant pain. My son died at age 25 in 2007 due to a large, malignant tumor in his chest. There is no cure for this hideous genetic condition. I don’t need to lose weight as I am pretty small (5’3"/ about 104 lbs.) I just need to do anything I can to help slow this down, I’m being eaten up alive by tumors. I will add that I ask my neuro/oncologist if keto diet would be a good thing to do with NF1 and he gave me an immediate “No”…However, after much research and reading all I can find about neurological conditions and keto, I am of the opinion that I could benefit… There’s literally nothing else I can do.


(Old Baconian) #13

A ketogenic diet is not a cure-all, but it can often help. You probably know about the Warburg effect, which is basically a discovery that many cancers cannot metabolise fatty acids well but thrive on glucose. Those cancers can be impeded by a ketogenic diet. I understand, however, that certain cancers actually grow better on ketones, so it is a matter of knowing what you are dealing with.

You might find it helpful to track down lectures by the cancer researcher, Dr. Thomas Seyfried, who believes that most tumours are caused by metabolic damage. There is also a clinician in the Northwestern U.S., Dr. Dawn Lemanne, who is often willing to consult long-distance with your physician. She has a couple of lectures on the Low Carb Down Under YouTube channel, in which she details some success using a ketogenic diet as an adjuvant therapy to chemo and radiation.


(Jane) #14

At this point you have nothing to lose to try keto. You will have to make sure you eat enough fat to not lose any weight.

Just keep in mind it takes months on keto to heal internally so don’t expect miracles in 2 weeks. But I bet after a few months you will feel so much better you will never go back to a “standard american diet” (SAD) which is bascially high carb, low fat.


(Edith) #15

You may want to look into the Paleolithic Ketogenic Diet through Paleo Medicina. They work with many people with autoimmune issues and cancer.

https://www.paleomedicina.com/en

Their diet is mostly carnivore, therapeutically high in fat and lower in protein. I think they’ve had great success with curing or at least putting patients into remission.