AIP (auto immune protocol)

I only did for one month, but my girlfriend followed it for over two years. She got a lot better with that diet and still avoid a lot of things that you cant eat on Aip.

i follow something v close to the AIP

no grains
no pulses
no seeds
no nightshade vegetables ( tomato, potato, aubergine etc )
no milk/dairy - except an occasional bit of grass-fed organic butter ( seems fine )
no nuts ( i do sometimes have a few walnuts - which seem OK )

my diet is actually a whole food full ketogenic diet so basically meat/fish and non-starchy vegetables and has made the biggest difference of anything i have tried including multiple antibiotics and every supplement under the sun. there is alot of overlap between this and AIP

I do eat eggs though and as far as I can tell have no issues with them

my partner has the same illness and is now 90% recovered - has been on the same diet for 2years now
still cannot tolerate nuts of any sort etc so it seems variable from one person to the next

Interesting. I'm full ketogenic now for almost 3 weeks my inflammation is way down. Started w/ the Captain Soup challenge (you eat nothing but that, theyre fantastic). At the 2 week mark i started adding in steak and eggs. Had no problems with eggs. Just added in a few veggies last night. And almonds. No problems yet.

I should admit that i have been eating coffee w/ a touch of heavy cream the whle time. This is the one thing i cant give up, and my only cheat, but it hasnt seemed to affect me at all.

I will probably stay at where i am at now, select vegetables meat and eggs, for another 6 weeks, until i start adding in a few dicier things like fruits. I'd like to get to the point where I can tolerate a healthy cheat meal here or there.

Has anyone here tried a plant-based diet for autoimmune illness, such as the one recommended by Dr. Brooke Goldner in her book Goodbye Autoimmune? She had advanced lupus and kidney failure, and has been free of signs and symptoms of both for 14 years (including negative labs) using only diet. I have not read the book but have seen her speak.

dcd2103 said...
Garzie, i meant to ask you.

What do you make of the fact that a lot of the smarter guys like Chris Kesser say that full ketogenic shouldnt be followed for more than 60-90 days?

The problem is that 1.) You can really destroy the good bacteria in your stomach and 2.) Apparently yeasts can feed on ketones, which means if you're destroying the bacteria and feeding yeast, you open yourself up to candida infection?

Sounds like you've done it and its gone well for much longer than that?

i think in general CK is right and if possible we should be feeding our gut bacteria with lots of diverse foods and especially many different fibers and resistant starches ( these are the things that drive diversity in the gut microbiome more than fast and proteins or simple carbs)

this assumes you are otherwise able to tolerate these things though.
and even CK would say that restrictive diets may be necessary to maintain until you can successfully treat the root cause - and would be the first to admit that Lyme is tricky and lengthy to treat for many.

as long as I have Lyme i cannot tolerate these things so it's a bit of a no-brainer for me
i am however doing my absolute utmost to treat the underlying cause and look forward to when I can enjoy more varied foods.

my partner can tolerate some things
eg oats in moderation now
the odd treat etc
a glass of wine here and there

we eat really well and I calculated i do still get 20-25g of fiber per day from varied sources
(olives, salad, herbs, mushrooms, a few nonstarchy boiled veg like green beans, etc )
which is more than the average person on a typical western diet - so although I would like to eat more and more varied sources of fiber - it's not preying on my mind as the number one thing at the moment.
I think I could happily eat like this for the rest of my life if I had to.

my partner got am immediate step up in the first weeks of going keto and then she just started to recover more and more the longer she stuck to it

I don't know about yeasts and ketones
I very much doubt they can metabolize them as well as sugars from carbs so I am not unduly concerned

intheuk said...
thank you, that's really encouraging to know. yes it's definitely a mind shift for me as I was almost vegan before I got ill. i do miss nuts, seeds and grains but I'd rather have energy than not & want to try to revive my brain capacity.

yes I've thought about the Keto diet too, I just came across AIP first although it recommends cassava flour which is super high in carbs so I don't think it's good for the lyme. I get my meat direct from an organic farm and I'm lucky to live on the coast so fish is fresh. so trying to make the best of it. my brother pretty much eats like this anyway so he thinks it's a great idea!

I want to get back to multi day hiking and this means more to me so I'm going to keep on. I just feel the last 3 weeks more of a symptom set back, but actually the progress I've made over the last 6 months has been significant. so I remind myself that recovery isn't linear.

out of interest is your partner planning to re-introduce any of those foods now?

yeah - I was really resistant to the idea of Keto for a long time - had grown up with sports nutrition and that was all about complex cabs making up the bulk of every meal - which had worked well for me all my life till now.

the form of Keto I follow includes only meals made from fresh whole foods - no flours or flour substitutes - or any Keto products of any sorts ( the health food stores and online shops are full of so many things labeled Keto! )

sounds like you are on the right track - keep at it and I'm sure it will bring rewards

we also buy all our meat at a local traditional organic farm where the animals are grown slowly and naturally
it really feels as if we are putting the very best stuff you can buy inside us and it really seems to help.
try to eat only organic veg also and eat oily fish most days too!

Garzie said...

i think in general CK is right and if possible we should be feeding our gut bacteria with lots of diverse foods and especially many different fibers and resistant starches ( these are the things that drive diversity in the gut microbiome more than fast and proteins or simple carbs)

this assumes you are otherwise able to tolerate these things though.
and even CK would say that restrictive diets may be necessary to maintain until you can successfully treat the root cause - and would be the first to admit that Lyme is tricky and lengthy to treat for many.

as long as I have Lyme i cannot tolerate these things so it's a bit of a no-brainer for me
i am however doing my absolute utmost to treat the underlying cause and look forward to when I can enjoy more varied foods.

my partner can tolerate some things
eg oats in moderation now
the odd treat etc
a glass of wine here and there

we eat really well and I calculated i do still get 20-25g of fiber per day from varied sources
(olives, salad, herbs, mushrooms, a few nonstarchy boiled veg like green beans, etc )
which is more than the average person on a typical western diet - so although I would like to eat more and more varied sources of fiber - it's not preying on my mind as the number one thing at the moment.
I think I could happily eat like this for the rest of my life if I had to.

my partner got am immediate step up in the first weeks of going keto and then she just started to recover more and more the longer she stuck to it

I don't know about yeasts and ketones
I very much doubt they can metabolize them as well as sugars from carbs so I am not unduly concerned

It’s interesting because you feel that the infection causes the dysbiosis.

I cannot pinpoint an infection. I’ve done extensive testing and have tried antibiotics.

Yet I have the non-specific autoimmunity often seen in these chronic diseases. I flip back and forth if my messed up gut caused my autoimmunity, or vica versa, or if they’re coincident factors. Probably the latter.

To me it’s some breakdown in homeostasis caused by something. Doesn’t have to be an infection. Maybe just my MTHFR/screwed up detox combined w metals combined w my unhealthy lifestyle, and enough feedback loops break that the system blows.

That all makes sense. The part that does NOT make sense to me is why it’s so hard to right the system. There are people who end up in our situation, “out of homeostasis”, and they try their whole lives. Do everything perfectly, and still can’t right that ship. Or they right it, but as soon as they slip up it’s like their body wants to fall back into that broken loop.

What also doesn’t make sense to me is why this doesn’t show up on testing most of the time. We have inflammation. We have pain. We have low energy, we often times lose or gain massive amounts of weight. But yet on standard diagnostic tests we look fine.

What also doesn’t make sense to me is how my body can fall so quickly out of homeostasis, when I used to be a fit put together young man. Yet my uncle is 65, smokes like a pig, and I kid you not, eats a bag of starburst and a box of donuts for his sustenance, and is fit as a fiddle. How?!

Post Edited (dcd2103) : 10/27/2020 1:50:08 PM (GMT-6)

I had a year on junk food years ago which seems hard to believe now and I didn't feel good on it. I've always felt healthier eating better. yes there are things I miss - nuts and seeds at the mo but no way would I swap any of this for junk food.

yeah - I hear you - and I certainly don't have all the answers.

my thoughts are
some people are more susceptible than others
i do think its likely infection is involved in my case - but that what we think of as infection normally and chronic infection are quite different things
acute infection has easy to detect markers, unequivocal serology, High CRP, ESR, obvious bacteremia, radically upset CBC etc.
chronic infection has none of these things - the actual density of bacteria is 1000 or 1,000,000 times less than in acute infections ( eg one in a million cells in the case of Bartonella ) serology is notoriously unreliable because the organisms have disrupted the immune function in order to survive, but this is still enough bacteria to cause inflammation and upset the system. eg Lyme disease spirochetes cause white blood cells to release 1200x the amount of the cytokine IL-6 that they would normally do if the Lyme was not there. PCR is typically unreliable unless you can be sure you have got some of teh offending bacteria in the sample and that is harder than we tend to think with many of the chronic infections (as per the earlier example - Bartonella may exist at a concentration of only 1 Bartonella organism per 1 million red blood cells in chronic infections)

perhaps most people have this sort of chronic low-level infection to some degree or another ( they are finding bacteria in even healthy brains at autopsy now via PCR ) - but if you pick up too many or too aggressive bugs, and beat up on your system with stress, poor food, poor sleep etc etc at the same time they can get out of hand - your body will have fought this as much as it is able then finally collapse as it tips over into illness. it makes sense to me that is a place hard to get back from as it is actually a hard place to get into in a lot of ways ( we just call most of those ways modern living )

it doesn't have to be an infection. for other people, it could be pesticides, heavy metals or as you say - just v poor lifestyle for a few decades.
in fact, we are seeing such exponential rises in the last few decades in things like developmental disorders, ADHD, autism, asthma, COPD, autoimmune diseases, etc it suggests to me that factors in our environment ( including our food ) are all playing a part in weakening our systems - so in fact infections are best viewed as just one thing in our environment that is driving this.

I'm not sure if it is a quick process for most people - i have read in papers and books from leading LLMD's that for many with chronic Lyme like illnesses - it came on gradually - often as a series of seemingly unconnected health issues and then finally it became clear that something is centrally going on and causing all these odd symptoms.

in my own case, the medical records showed that i had thyroid issues starting around 5 years before i got fully ill and gall bladder disease started around 3 years before getting fully ill.
those 5 years were the most challenging of my life - they were also the most unhealthy and involved extreme work hours lots of international travel and sustained high stress and low sleep.

so this picture i now have is one of my body fighting gradually getting ground down to a point it could no longer fight off infections that i probably had inside me for many years - maybe even since i was a kid.

infection certainly does seem to be able to trigger dysbiosis - clinically SIBO is known to be triggered by viruses, etc amongst other things. and on one of the other threads, we have been discussing the fact that Lyme can shut down the expression of the VDR receptor by a factor of 50x less expression than normal. this is relevant because the body uses the VDR to trigger antimicrobial peptides at the cellular scale to manage its microbiome in the gut. with this VDR shut down dysbiosis is a logical downstream outcome.
Bartonella also seems to mess with the innate immune system in a similar way.
testing for both of these is particularly troublesome.

i also find in the reading i have done many instances of cascades and vicious cycles in the interacting mechanisms inside the body - so for instance once the gut goes into dysbiosis, inflammation rises in the gut and systemically, this causes the gut to become hyperpermeable, this releases lots more junk into the system, causes yet more inflammation and further upsets the immune system, sleep is effected, pain, fatigue etc all spiral, each feeding more of the others - ie the opposite of self-righting homeostasis - so to me that is the explanation for why its so hard to correct.

i do believe its possible though - and even that the body is set up for that if we can pull on enough levers to help it right itself.
as an analogy, i think of it a little like a fiendishly complicated mechanical machine
with innumerable complex cogs and gears, all whirring and grinding away and the needle on the gauge is in the red - but the machine has lots of momentum built up and we now somehow have to pull on many levers as hard as we can and keep them there to get the needle to gradually return to the center.

these are just my thoughts and observations as i have wrestled with many of the same questions you have

dcd2103 said...
I should admit that i have been eating coffee w/ a touch of heavy cream the whle time. This is the one thing i cant give up, and my only cheat, but it hasnt seemed to affect me at all.

Ever try coffee + grass fed butter in a blender? It's really good!