Ketogenic diet for Lyme disease

I was wondering if anyone else had gone on a ketogenic diet for Lyme disease. I've been on a keto diet for a little over 6 months, I have more energy, I think I have fewer neurological symptoms, and I've lost almost 50 pounds. I could not lose weight for anything before this! I know I'm not alone in that.

It does make sense that I have had fewer neuro symptoms, because this is the same ketogenic diet that has been used so successfully to treat epilepsy (among many other medical conditions, epilepsy being the most famous).

Specifically for weight loss/insulin control, I've also been doing intermittent daily fasting, that is, I've only been eating between noon and 3 p.m.

I'm also taking several supplements for insulin control/serotonin control that aid in weight loss, but I don't want my first post to read like an advertisement. I assume that I'd still have lost weight without them, it just would've been slower. The main thing is getting healthy, but I know I'm not the only woman who was very unhappy with weight gain due to Lyme & co, or else I'd only mention the ketogenic diet. I'm happy to provide a list of the supplements for weight loss if anyone wants them!

I stumbled upon this site while doing a search, and the first thread I read made me think I ought to share this...

Hi! Thanks for the welcome. I have had symptoms of hypothyroid since my early 20s. I test as low normal. The one doctor who agreed to treat me for subclinical hypothyroid prescribed compounded T3/T4. It didn't seem to help.

I'm working my way through that New to Lyme post right now!

I find going low carb for any amount of time to be incredibly hard. I really start to crave sugar and carbs like crazy.

Mustard Seed said...
I find going low carb for any amount of time to be incredibly hard. I really start to crave sugar and carbs like crazy.

This can be indicative of a Candida infection. Please do address this! We have a really detailed post about Candida and fungal infections at the bottom of page 2 of the "new to Lyme?" thread by Pirouette that you can read to get a better sense of what's going on and how to treat it.

Worst thing ever created by humans - LOL!

We don't call it the famine diet for nothing. It does work though.

Huddie said...
Mustard Seed,

There are tricks for this. I don't do sugar either.

For example for breakfast I'll have a smoothie with almond milk, protein/spirulina, coconut oil, some frozen dark cherries. It's tastes sweet and it's filling. I'll also do a gluten free bread that I make. Most gluten free breads don't taste good and/or have bad stuff in them. The 'bread' is coconut/almond flour based and has a little stevia in it -so you feel like you are having a card. After a while on it you can have a little organic quinoa or a half of a sweet potato. All the cravings go away once you do it. They really do.

The reason I avoid most gluten free breads is that they're generally higher in carbs than regular whole wheat bread, and those carbs just convert to sugars in your body anyway. I've been trying no carbs no sugar.

It is good to eat gluten free and dairy free, and of course limit (but not remove) sugar intake. Gluten, dairy and insulin are highly inflamatory.

Dunno about low carb, i tried this long time ago for 2m and besides getting dangerously thin, i felt horrible.

Glucose is needed by your cells. The state of ketosis is abnormal, esp if you are obese ketosis can kill you because your liver will be overwhelmed by liquified fat and die. Then without a liver you cannot survive.

Unless you have uncontrolled epileptic seisures you should have no reason to put yourself into ketosis.

Post Edited (mpost) : 11/20/2016 3:45:09 PM (GMT-7)

I eat low carb diet (carb cal below 500) and kind of warrior diet (once a day in the evening, some fruit during the day), but I consume dairy (butter and hard cheese for calcium). I will try removing fruit for a period. When I eat a banana some dizziness appears. I have some neuroLyme and prostate symptoms persisting.
I read carbs should be 600-800 cal.

You did just fine with the quotes!!

And, here's a link for a search I just did on this site showing all the entries for a Keto diet. Many people are on one form or another of a Keto type diet - or something not far from it:

/goo.gl/u36Ur1

about the liver....

my husband thinks there may be some confusion. On a standard diet/diet with carbohydrates, the liver converts fructose into fat and stores it in the liver. This can cause non-alcoholic fatty liver disease. On a ketogenic diet, the liver reverses this process. The liver does not get "overwhelmed by liquified fat and die," but, rather, it burns the fat as fuel and liver health improves. The liver eventually recovers, once the fat stored inside it is gone. This is the difference between a health risk versus a treatment for a liver condition.

I am often amazed at what a panacea a properly-balanced ketogenic diet is. Now if it was only the cure for Lyme & co!

Regarding dairy, my husband is on a keto diet but doesn't eat dairy. It's possible to do with a lot of coconut oil. Some people are more sensitive to inflammation from dairy than others, so it just depends! I eat a lot of dairy, and most people on a ketogenic diet do, but some people can't handle it, and you just avoid recipes that require dairy.

hi Susannah,

I'm on keto here for about 4 months. Not sure if I have it down or not, my keto strips just barely indicate ketosis, but I'm working on it.

I did loose about 6 pounds and have a little more energy as well. My LLMD likes that I'm on it.

There's no doubt that we each have to find a diet that works for OUR own body. If you have found it in this, I would encourage you to stick with it - but, if you are dealing with adrenal issues, I would encourage you to not fast as that puts even more stress on the adrenals.

I'm not sure what you mean by adrenal inversion though - your adrenals are operating in reverse, so that your cortisol is highest in the evening and lowest in the am?? I was flat lined on cortisol and at a very low level by the time I was diagnosed with severe adrenal fatigue, so I'm very familiar with the struggle.

I do have a question about your digestion though, as that's one of my biggest problem areas. Do you know if you have enough stomach acid? I don't and it really slows the digestion of my food - eating used to make me exhausted as well because it took so much energy from my body to perform that process. Many years of using ginger and digestive enzymes has kind of gotten it back on track though. I even actually feel hunger once in a great while now!

You may be onto something about the stomach acid. I've had acid reflux for a long time, it was severe enough for me to ask a doctor about it when I was 17, and I've taken everything for it...Prevacid, Nexium, even 3 meds at once (Omeprazol, Zantac, and Galviscon); nothing could control it. Then, I started taking 100 mg D-limonene gel cap daily, which is basically orange peel extract...before that, I tried taking 1000 mg every other day, which is supposed to keep reflux away for months, but it would come back in weeks, so taking a daily dose was just cheaper and more effective. Of course, all the MDs wanted to give me PPI's to LOWER my stomach acid, and that never worked. When I read about how dangerous they could be in reducing stomach acid so much that you could die of otherwise harmless bacteria, I decided to stop taking it. (There's even more data about why they're dangerous now!) Later, I read that acid reflux can happen due to LOW stomach acid! So, just because I still have acid reflux, I know that doesn't mean I don't have low stomach acid (doesn't rule it out). The D-limonene makes it rare, but it still does happen, and I don't know if it's caused by a weak esophageal sphincter, or low stomach acid, or something else. (My tendons and ligaments are really weak from adrenal problems, so maybe it IS a weak sphincter.)

I have been having this "feeling worse after I eat" for a few years, maybe 4 years, 4.5 years. I think I was herxing then (in 2012)...I was taking garlic and cinnamon pills, the garlic was causing seizures, and my liver became inflamed. I started taking enzymes for my liver, and quit taking garlic. Now, I think maybe I was killing Bb and reacting to neurotoxins, because I wasn't detoxing. Maybe trying to filter out those neurotoxins made my poor liver sick, since I was born with some liver impairment so was already vulnerable. At the time, I blamed the cinnamon pills, stupid me, I didn't read the label...I'm allergic to sodium/ammonium lauryl/laureth sulfate, I haven't been able to use it since I was 17, and it was IN the pills! (It makes the skin fall off my scalp in huge chunks, leaving a red scalp without the upper layers of skin, so what does it do inside my body?) I now boycott Walgreens because of this (store-brand cinnamon). SLS can build up in the liver, and the liver can't expel it, and I was SWALLOWING it. But maybe it wasn't the SLS at all. The small amount used to make the caps not stick to the pill machine probably wasn't enough to do what taking those pills did to my liver. Still, I check pill labels now and mostly buy from LEF, Standard Process, and other more reputable companies. Many companies use natural products to keep pills from sticking instead of SLS, I steer towards those.

Regarding fasting...I have only done a few whole-day fasts in my life. I have been concerned about stressing my adrenals. I did do one whole-day fast earlier this year, but decided it was a bad idea, even though I had no ill effects (it did break a weight plateau, which was the reason I did it). The fasting I am doing is only a 21-hour fast, and I'm eating for a 3-hour window daily. It's not a long enough fast to harm my adrenals further. It allows me to only feel awful after eating once per day, and helps with blood sugar (I have hyperinsulinism) and weight loss (I still need to lose ~10 lb). The longer fast was 45 hours, which was probably safe, but I'm not going to risk it again.

By adrenal inversion, I mean that my adrenal test showed my cortisol is highest at night, in fact, they're actually in the normal range at night (or were when tested in 2010), even though they're flat-lining all day. That burst is enough to cause difficulty getting to sleep and staying asleep. I've known for a long time that there was a problem further up the HPA axis, since after 2 years of treatment, I hadn't gotten better as promised (I've been treating it for 6.5 years now). I assumed it was pituitary or hypothalamic, maybe limbic, but now I think it's just caused by Lyme & co, though I plan to rule out other causes.

In general, I plan to rule out any and all differential diagnoses. Just because it's Lyme, doesn't mean it's not also auto-immune. Just because symptoms X and Y can be caused by Lyme, doesn't mean it's not caused by something else.

I agree that a ketogenic diet wouldn't work for everyone. Arguably, it would work for most people, everyone except those who have a medical problem such as an inability to digest fat, but, would it be the BEST diet for everyone? Just because a person can live on a ketogenic diet, that doesn't necessarily mean it's the best possible diet for them and their unique health picture. It might be that it's the best diet for most people, but even if that's so, not for everyone, and I wouldn't presume to tell others this is definitely what they should be doing. I do think it's worth looking into and considering, especially for people with any of the health conditions it's helpful for.

My husband decided to go keto because he has a rare mutation that causes cancer (Lynch syndrome). He has something like an 86% chance of colon cancer, he had already caught 2 cancerous polyps early and got all the cancer in the biopsy, the 1st was in his 30s, the 2nd was this year. It makes him predisposed to all cancers, but the highest risk is colon cancer. He does everything he can to prevent cancer, so when he finds a new supplement or diet or health habit that will help ward off the Big C, he looks into it and incorporates it into his life. Bonus: he lost over 60 lb this year, and, after 2 months, I decided to go on the diet, too, and lost 47 lb so far, plus more energy and fewer neurological issues. We are each about 10 lb over the lowest weight we've ever been as fully-grown adults, but we're both sticking to the diet after our weight loss goals are achieved, because the health benefits outweigh the deprivation, however, I take special occasions off...my birthday, Christmas, Thanksgiving, weddings...those are food holidays! I'm not willing to never have certain foods again, though I am OK with once a year or once every few years for most of the things I miss.