UPDATE: Steven has created his own website with more information, www.recoveryfromas.com. Check it out!
In January I wrote about Steven Morgan’s recovery from Ankylosing Spondylitis on a modified version of PHD. Steve generously shared his email address and has been trading ideas with other Ankylosing Spondylitis (AS) sufferers.
Steve had a flare of his AS recently after drinking some dirty water on a camping trip, so he has had to re-recover from AS. He recounts his recent experiences here:
Commentary
AS sufferers often see symptoms flare when consuming starch. This may be, as Alan Ebringer has argued for the last 20 years, because the disease is caused by a Klebsiella infection in and around the gut. Infiltration of Klebsiella into lymph nodes around the gut can lead to formation of antibodies that cross-react between Klebsiella lipopolysaccharides and our native HLA-B27 and collagen. These autoantibodies can generate autoimmune attacks on collagen, a characteristic of all the spondyloarthropathic diseases. [1] [2] [3] [4] [5] [6] [7]
Klebsiella is a carbohydrate-metabolizing bacterium; in cell cultures, any carbohydrate – glucose, fructose, galactose, and compound sugars such as sucrose, lactose, and starch – will facilitate Klebsiella growth. This has led Ebringer to advocate a diet low in carbohydrate for AS patients. Since resistant starch is the largest source of carbohydrate fiber in modern diets, that means a low-starch, low-carb, high-protein diet.
The general tendency of PHD is the opposite: we recommend getting about 30% of calories as carbs, and 5/6 of all carb calories from glucose. On a natural whole foods diet, this means that starches are a significant part of the diet.
PHD is generally a gut-friendly, fiber-rich diet. A diverse gut flora is associated with good health, and achieving a diverse gut flora requires a diet rich in carbohydrate fiber including resistant starch from cooked-then-cooled starchy foods.
This raises a tension in many gut diseases:
- Symptoms flare whenever starches and other foods rich in carbohydrate fiber, such as the FODMAP bearing fruits and vegetables, are eaten.
- However, there cannot be a full recovery until a complete gut flora has been restored, which requires feeding probiotic bacteria with starches, fruits, and vegetables.
Ebringer’s recommendation of a low-carbohydrate diet is palliative but not necessarily curative. It reduces symptoms, but it doesn’t by itself roll back the infection or bring about growth of a beneficial gut microbiome.
As a temporary therapeutic measure to facilitate a full recovery, I often suggest using dextrose in place of starches as a source of carbs, along with steps to support immunity and development of a probiotic gut flora.
Dextrose is pure glucose. It is rapidly absorbed in the small intestine and therefore is unavailable to gut bacteria. Dextrose can therefore provide enough carbs to support immune function, mucus production, collagen repair, and general good health, without providing any fiber to gut bacteria.
Steps like consumption of liver, sun exposure, intermittent fasting, and circadian rhythm entrainment will further support immune function and aid suppression of the infection that caused the disease.
During this period of low-fiber dieting, eating fermented vegetable juice and other sources of probiotic bacteria can help displace bad bacteria from the gut. As probiotic microbes become more dominant in the gut, normal whole foods can gradually be restored, allowing a probiotic bacterial population to grow in place of the pathogenic bacteria.
Steven has largely followed this plan of attack, with success. It should work for all the spondyloarthropathic diseases including rheumatoid arthritis. I’d love to hear from others who try it.
References
[1] Fielder M et al. Molecular mimicry and ankylosing spondylitis: possible role of a novel sequence in pullulanase of Klebsiella pneumoniae. FEBS Lett. 1995 Aug 7;369(2-3):243-8. http://pmid.us/7649265.
[2] Ebringer A et al. Molecular mimicry: the geographical distribution of immune responses to Klebsiella in ankylosing spondylitis and its relevance to therapy. Clin Rheumatol. 1996 Jan;15 Suppl 1:57-61. http://pmid.us/8835505.
[3] Tani Y et al. Antibodies to Klebsiella, Proteus, and HLA-B27 peptides in Japanese patients with ankylosing spondylitis and rheumatoid arthritis. J Rheumatol. 1997 Jan;24(1):109-14. http://pmid.us/9002020.
[4] Rashid T et al. The potential use of antibacterial peptide antibody indices in the diagnosis of rheumatoid arthritis and ankylosing spondylitis. J Clin Rheumatol. 2006 Feb;12(1):11-6. http://pmid.us/16484874.
[5] Ebringer A et al. A possible link between Crohn’s disease and ankylosing spondylitis via Klebsiella infections. Clin Rheumatol. 2007 Mar;26(3):289-97. http://pmid.us/16941202.
[6] Rashid T, Ebringer A. Ankylosing spondylitis is linked to Klebsiella–the evidence. Clin Rheumatol. 2007 Jun;26(6):858-64. http://pmid.us/17186116.
[7] Rashid T et al. The link between ankylosing spondylitis, Crohn’s disease, Klebsiella, and starch consumption. Clin Dev Immunol. 2013; 2013:872632. http://pmid.us/23781254.
via this link:
Hi Paul,
“During this period of low-fiber dieting, eating fermented vegetable juice and other sources of probiotic bacteria can help displace bad bacteria from the gut.”
My questions is how can probiotics help if they’ve nothing to feed on?
Because you even wrote:
“[…] until a complete gut flora has been restored, which requires feeding probiotic bacteria with starches, fruits, and vegetables.”
I’d be very keen to hear a response to this also. I have AS and for the last 3 weeks I have tried the raw potato starch and AOR probiotic 3 combo. Has worsened things to be honest.
After reading the resistant starch stuff for the last few weeks, I thought I had stumbled upon something groundbreaking, but there’s no getting away from the fact that we have to treat the klebsiella overgrowth first.
If it’s of any sgnifiicance, towards the end of last year, I tried the combination of Align (containing b infantis) and lactoferrin (after reading of the success of another memner of KickAS). This brought significant relief within 2 weeks, and then levelled off after Christmas time and never really made a difference since.
I realise now that I’m fine with freshly cooked potatoes and rice, but need to avoid the cooked and cooled due to the RS content.
https://www.ncbi.nlm.nih.gov/pubmed/24324956
Hello Paul,
What an odd coincidence, I tried this out literally a couple days ago out of curiosity. My girlfriend has very bad eczema which we assume is connected to a leaky gut, and I came up with this idea (or so I thought) after reading about the selected carbohydrate diet for small intestinal bacterial overgrowth. I had also recommended this tactic to a friend who thought he had SIBO.
I wanted to try it on myself before telling my girlfriend to try it, but I only did it for one day so I don’t have a ton of info to relay. I dissolved 100 grams of dextrose in 750 ml of water and took tiny sips of it throughout the feeding window (to avoid blood sugar spikes). I felt good doing it, there weren’t any noticeable or significant gastrointestinal disturbances, and I took shots of fermented liquid while I was doing it. I didn’t, however, lower my vegetable intake. I wasn’t sure what the approach with that should be. It seems like that’s what you’re suggesting above: to remove all sources of fiber temporarily.
Anyway, all in all, my report from a one day experiment is: I felt totally fine. Pretty good actually. My friend, who tried it, said he felt like he was in “hummingbird mode”.
I have probable SIBO, definite Diabetes, and roundworms. Malabsorption is a constant fight, despite being obese. Whilst I suspect the worms have been a constant feature quietly hijacking my nutrition for well over 40 years, I didn’t start to suspect their presence until about 7 years ago.
Just over a year ago they came out of the woodwork bigtime, and whilst the larger worms are confined to my upper left side and around my back, the juveniles and larva go everywhere, from my face and scalp (and possibly brain) to my toes. I have seen worm tracks in my stool and around a wound from an operation on my broken leg, and I constantly have larva-shaped floaters in my eyes.
I have thrown everything natural I can think of at them and they just stick their tongues out at me. My doctors cannot do anything without ‘proof’ and I haven’t been able to give them any (or the lab is just missing it, which is more likely). This is not formication. Wriggling, writhing, slithering, knotting, biting, are not normal feelings, nor am I delusional.
Because these things are systemic, I would be nervous about taking drugs that could kill them and then having a body full of dead, rotting worms…….
I have been following gluten/grain free, low carb, higher fat for over 5 years, but they are still there. Instead of improving my insulin resistance it seems to have become worse. I have reversed some things on the diet, but trying to regain better health seems unachievable whilst the worms are constantly undermining my efforts.
I am waiting for an NHS appointment to possibly have my amalgams removed, as I suspect low-level mercury toxicity, but whether it was that that outed them, I haven’t a clue. Fatigue has plagued me since I was 14, and I am now 57. The worms keep me awake at night, and around Full Moon is horrendous. I am so weary of the constant torture.
I don’t know what else to do.
Ali,go on http://www.preventionandhealing.com and inform yourself how to get rid of parasites.Contact Dr.Simon Yu.He doesn’t need to see any Labs to treat you for parasites.Buy his book :Accidental Cure (by Dr Simon Yu) and learn what to do to get back to vibrant health.Treat/kill parasites and your medical condition will be an “accidental cure”.hope this is helpful.
Hi. Thanks. I already have Dr. Yu’s book – although most of it is on his website anyway. The only issue I have is that he is in the US and I am in the UK.
He would also recommend me having my amalgams replaced but unless I turn out to have an ‘allergy’ to mercury (which I am waiting to be tested for, but am unlikely to be ‘allergic’), The NHS here would not fund, and I do not have the resources to fund myself.
Dr. Yu would also suggest (probably) that I use helminthic drugs to deal with them, but I have tried that route and without ‘proof’, my doctor will not provide them. I am pretty sure I emailed Dr. Yu a while back but got no response. It’s obviously easier for him if he can actually see a patient.
Despite being very low carb, relatively high fat for some time, my insulin resistance has worsened. In a way, as worms are normally part of nature’s clean-up system, I wonder if they have increased because of the elevated sugar levels in my body?
I am currently trying a very low carb, low fat regime to see if I can manage to shift some of the stubborn fat and insulin resistance and get the sugar levels better controlled. I was in the situation of injected insulin barely working, but knowing the answer does not lie in raising my dosage (as per Dr. Jason Fung). My body doesn’t want the insulin. It’s already resistant to the insulin it makes, let alone injecting more!
Certainly, since starting this, I know the worms are very uncomfortable as they keep laying eggs and hatching. They usually do that when they feel threatened. But as yet, they are still there, and my nights are horrendous.
Hi Paul,
If Ankylosing Spondylitis is caused by a bacteria infection. Would it not be possible to cure it with antibiotics?
Rheumatoid arthritis isn’t a spondyloarthropathic disease, is it? http://en.wikipedia.org/wiki/Spondyloarthropathy
Doctors can’t deal with this stuff yet?
Nice post Paul. It’s actually the first time I hear about Ankylosing Spondylitis.
Hi Paul, Steven,
Thank you for giving AS some more time.
Ive been suffering with it for years. Over the last two years Ive been eating low starch Paleo with great results, with near total remission at times.
I was very happy with how I managed my AS with diet. However with all the information coming out about RS and feeding the microbiome I started digging and experimenting. I had eaten starches on occasion over the last two years with either no impact or a slight increase in pain for a day or two.
I’ve been reading lots on free the animal and Dr Grace at animal pharm. They both kept referencing PHD diet being more optimal. So I bought the book. After a few weeks of adding white potatoes, rice and some beans some cooked and some cooked and cooled I started getting back my AS pain. I had a big flare up so stopped the starch (which is where I’m at now). I understand all the principals of PHD and really want to implement them for my health. I thought I was doing fine initially, but then bam, pain. I know it may have been too much too soon, or just the beans. But I’ve come a long way in the last two years and feel as though I’m not far away from beating this. Just need to heal this leaky gut!
The information in the article is interesting and I will try to implement it and keep you updated.
Will stop with the starches and buy some dextrose. I will keep up with other fermentable fibres and my daily prescript assist, beet kvass and bimuno supplement, try to add more fermented veggies and see where it goes.
Regards
Andrew (UK)
How much dextrose could or should be taken per day?
I got the the dextrose and it is 10 cal. per tsp., so for 500 cal. carbs of glucouse you would need to take 50 tsp. or 16.66 Tbs. does this make sence?
Suffering from AS for a good 4 years. Very bad desimation of connective tissue in my back, really a very debilitating disease. Digestive issue involved, inflamed intestines. Tried many different diets, from PHD, low starch, paleo, body eco, gaps. Some working better than others but never success.
Finally received official diagnosis and went on immunosuppressant drug Humira. After approx. 6 weeks have seen dramatic improvement in my digestive problems. Can now eat starches.
So now seemingly absorbing nutrients better, my mobility and strength improving. 12 weeks in now and a vast improvement in my condition.
So can now fully work on correct diet.
What I can say is was very reluctant to use this drug but honestly has been a life saver.
There seems to be direct link to gut health and AS. The humira for me has calmed the gut.
Seems crazy that billions of people can eat a diet of 50% white rice and not have any issues and some people have this major issues. The question is, once people fix there gut can everyone go back to eating white rice?
Tim, interesting that you can eat starches after you started the drug Humira. Maybe some people just need to eat immune balancing foods with their starches.
Hi Paul, Just curious, but wouldn’t white sugar also do the same thing as dextrose? Wouldn’t it get rapidly digested so it couldn’t feed bacteria also?
We have fewer fructose transporters than glucose transporters in the small intestine, and some people have fructose malabsorption, i.e. the fructose is left for gut bacteria and promotes small intestinal bacterial overgrowth. See also the book for why we want a high glucose:fructose ratio in digested/absorbed sugars.
The late Dr. Thomas McPherson Brown considered RA & AS to be under the umbrella of connective tissue diseases with an infection etiology. See The Roadback Foundation.
I’ve been on 200 mg of doxycycline, on MWF, since about 2008 for RA. I’m in remission, but in no hurry to chance it and stop the doxycycline.
I have wondered if it is possible to get off antibiotics and restore my gut with a wide range of good microbes and maintain my remission.
What about Acacia Senegal is that ok?
Dextrose is mainly made of wheat or corn if im not mistaken according to google.
And according to this website corn can be problematic for gluten sensitive people:
http://www.glutenfreesociety.org/gluten-free-society-blog/is-corn-gluten-really-safe-for-those-with-gluten-sensitivity/
I found one product thats made of cassava, called Tapioca Maltodextrin:
http://www.amazon.com/N-Zorbit-Tapioca-Maltodextrin-Molecular-Gastronomy/dp/B00C3HL6VK/ref=pd_sbs_gro_2?ie=UTF8&refRID=0B5K6X8KBBRQZXTM24K9
But would Maltodextrin work the same way as the the dextrose you mentioned or is completely different?
What if someone gets autoimmune (vitiligo) flares from starch, would Maltodextrin/dextrose be a good idea?
Would really want to know what your gut feeling is.
This was very interesting. I am wondering if I would benefit from this type of approach.
My stool test found overgrowth of Klebsiella (as well as Hefnia and Candida). I am taking antimicrobials and probiotics for this but I wonder if I need to do more dietary wise. Currently I am eating full PHD but no eggs or dairy as my blood results showed sensitivity to these.
I recently also suddenly developed a painful swollen red hot knee. First time ever. I wonder if it is related. After a few weeks it is almost back to normal now though. I am wondering if it is the endotoxins/LPS from the bacteria or perhaps another cause like reactive arthritis or an autoimmune reaction?
It is worrying as I had an episode of sore hips 8 months ago. i also had a miscarriage which I believe may be a result of the endotoxin.
All these health issues started after bad food poisoning over a year ago. I am 30. I feel that starches may be feeding the bacteria and counteracting the treatment.
Prior to this year I also have had tingling/numbness and occasional pain in my big toe and on and off tingling type discomfort in my mid upper back.
I don’t really know what is going on but apparently it’s not a musculoskeletal problem according to the physio and the doctors I’ve seen have not been helpful.
Any tips on what to concentrate on food/supplement wise would be much appreciated. In particular if perhaps I should try the only dextrose for carbs approach for a bit.
I should also add that I have lost a lot of weight in the last 2 months since a course of antibiotics for UTI (which may have been caused by the Klebsiella and Hefnia bacteria). I am already on the too slim side.
The un intentional weight loss may also be due to me recently cutting out dairy and eggs (two foods I used to eat daily).
Hi Paul, Just wondering if you saw my question from last week. Any tips to help me out would be appreciated.
I tried eating dextrose but it seems to make me worse. I seem to get heat coming up to my throat from my stomach, perhaps it’s from the candida (alcohol byproduct???) and the burning in my tummy/rib area seems to get worse. i think it’s from the carbohydrates.
Hi Claire,
It does seem like you’ve had a chronic infection since the food poisoning, and unfortunately the course of antibiotics didn’t fix it.
The natural steps you can take include eating liver, green leafy vegetables, and orange plants for vitamin A, vitamin D and vitamin C supplementation, intermittent fasting, circadian rhythm entrainment, iodine, salt, fermented vegetables. Use a diversity of spices on your food.
A fecal transplant would be good if they were more readily available.
If you don’t notice any effect when eating them, try eating egg yolks only (discard the whites), mixed with food and cooked. This greatly reduces the potential for inflammation.
The reaction to the dextrose might indicate SIBO and acid reflux. Are you mixing it with food (fats and meats)?
Based on the last article from you and Steven, I tried using dextrose as my main source of carbs but would break out with acne. I tried taking it out and putting it back in with the same results every time(three times with at least a couple weeks in between). I’m willing to put up with the acne if it rids me of AS but I’m not sure what it’s trying to tell me? I follow PHD guidelines but am having a really tough time digesting fruit carbs and the only starchy carbs I can seem to eat are sweet potatoes. I feel this is the last piece of the puzzle for me and would really appreciate feed back from any one.
It’s probably trying to tell you that you are short in certain nutrients that protect your skin from inflammation. Try PHD advice for zinc, copper, vitamin A, vitamin D, pantothenic acid, iodine, choline, and molybdenum.
I just wanted to let you know that I’ve tried using dextrose as my only carb source in order to get of my SIBO (the idea was that the dextrose wouldn’t reach the SIBO in my gut, and would thus be digested without giving me symptoms). Unfortunately it made my SIBO much worse. Apparently the dextrose powder still reached my SIBO, and it is of course the perfect food for a bacterial infection. So you might have some sort of infection in your small intestines if dextrose gives you trouble
I just observed a friend making Challah. Part of the recipes requires using yeast and activating with the appropriate temperature and bit of food (sugar). With the proper environment, the yeast grew exponentially fast. Watching the its quick growth, enlighten me more than taking a biology classes on how overgrowth yeast may grow in our guts.
Do you have any videos on how yeast or bad bacteria works with sugar and different types of starch (squash, dextrose, breads, potatoes, resistant starch) once it is in our gut. I am curious if it behaves similarly. I think a video or an active visual would help me connect at a deeper level than logic to continue to not eating added sugars and complex starches as I heal my gut flora. TIA!
I was hoping you wouldn’t say that because I’ve been taking the exact supplements recommended in your book/blog for almost a year now. Except for the copper. More liver I suppose. I could and will use a bit more iodine in the diet as well I’ve been taking digestive enzymes/betaine hcl& gentian bitters/oxe bile like they’re going out of style. I’ve still been passing big pieces of fruit and veggies completely undigested.
Thanks for getting back to me Paul and I’d love to hear from anyone that has overcome a similar issue.
Hi Willamena,
The copper and iodine will probably help, but it sounds like the main issue is a lack of normal gut flora, and probably an overgrowth of something harmful. Have you tried a stool test, and eating homemade fermented vegetables daily?
Yes, I did a gdx2200 stool test(only one-day sample) and no parasites or infections were detected. I didn’t know at the time to stir up the sample before sending it back, though. Streptomyces spp. and prevotella were both low. My ph was low(5.8) which is what led me to the digestive enzymes. I did a few months of antifungals with interphase plus, because of the amount of antibiotics I’ve taken over the years, for candida. I took/take copious amounts of probiotics. eg primal defense, prescript assist, multiple lactobacillus variations, s. boulardi, tons of differents brands/strains of bifido. I split those up randomly on three occassions per day. I take inulin and psyllium with my last probiotic dose of the day. I always have a batch of home made kraut which I eat at least once daily. I’m making an effort to make more than just kraut but haven’t had much luck. I’ll keep trying.
I have a “gut feeling” that you are right, Paul. It feels like there is something harmful growing inside of me but it’s proving to be an illusive foe. With all the work I’ve done on gut health, the agents I’ve employed to combat gut issues and the fact that the test found no major overgrowths, I’m stumped as to what I should do at this point. Maybe it just takes more time?
i had this undigested foods passing thru me also several years ago. bright orange carrot bits and lettuce absolutely undigested even in the slightest. this was after 2-3 week course of tetracycline. my problems are now a chronic low grade diarrhea that i’ve had for several years and i also suspect parasites 🙁
Hi Paul,
I have suffered from AS for 15 years and for the most part have controlled it with a daily dose of Dyclofenac NSAID only. 3 years ago things go really bad, I couldn’t sleep, couldn’t walk from excruitiating pain. I found Alan Ebringer’s diet online and started following it immediately with benefits coming almost immediately as well. It got things back under control and started me on my process of dietary medicine.
For 2 years I ate meat, eggs, fat, berries, chocolate and green vege only (no beans). I had never been better however suffered other problems such as terrible constipation which required me to use ground flax seeds every day to help keep it under control. I also became skinny….too skinny for my liking with a lack of muscle definition. Eventually I came to the conclusion it wasn’t the full answer.
I started reading about resistant start and gut bacteria and added in Potato Starch as a test into my diet. I was very surprised to find that I didn’t keel over in pain like I was expecting as I had learnt that starch was the absolute enemy and had spent 2 years eliminating every last bit of starch from my diet with iodine tests. I wouldn’t even eat green vege if it contained starch or an apple. The Potato Starch immediately fixed my constipation issues.
The Potato starch gave me confidence to add in cooked and cooled potato’s, and then white rice. I workout with weights 3 times per week so for the last 8 months I have been adding 400 grams of potato or white rice to my meals post workouts only with no noticeable difference to when I was only eating meat, fat and veges only. This has also enabled me to put on more muscle and bulk out. I have added 5-6 kgs of muscle on my tall lean frame and body fat percentage around 12-15% is my guess. This was impossible previously without carbs. I just couldn’t eat enough meat and fat to bulk up as it is too satiating.
I have just finished your book and am now eating 450 grams of Potato or white rice per day (or thereabouts). I’ve been doing this for a week so will let you know how it all goes. I’m still using Dyclofenac (although typically 100mg every 48 hours rather than every 24 hours) and its my goal to get rid of them to enable full gut healing.
Hi Paul,
I’ve been following your recommendations on the PHD for AS sufferers for a while now, have managed to adopt all the steps above, and am starting to feel a lot better for it.
The one question I have relates to the eating of fermented vegetable juice.
I started wild-fermenting my own saurkraut a while ago and try to drink some of the juice (about a jam jar full) every day.
When you state “As probiotic microbes become more dominant in the gut, normal whole foods can gradually be restored, allowing a probiotic bacterial population to grow in place of the pathogenic bacteria”, how long do you recommend I continue to eat Dextrose as my source of carbs and to drink fermented vegetable juice until I can start to introduce white rice, for example? Should I start eating some of the saurkraut before I reintroduce? Are there bodily indicators one can look out for?
I am currently taking 4 pills of sulfasalazine 500mg per day (last year I was in excrutiating pain on 6/day!) and I am almost entirely pain-free now. The next step is to eventually be medication free.
Thanks!
Hi James,
I would just test small amounts of starches — rice or potato — periodically. If you don’t get a reaction, try it more frequently. If you still don’t, try increasing the amount slightly. If you do get symptoms, back off.
It is really experimental on your part, there is probably no single path toward normalization of the gut flora. Every AS patient will be different.
Best, Paul
Dear Paul,
Thank you for doing and publishing your work.
My brother and I both have AS. We tried 10 grams dextrose powder dissolved in water yesterday evening. This morning we both had a flare of our AS symptoms.
On the whole we manage with an ultra-low starch, high fat and low protein diet, with kale, spinach and Broccoli providing the vegetable content.
I am not entirely sure if coffee (Bulletproof) is helpful. What is your experience of this?
Coffee is good, the fat I’m not so sure about. Be sure to optimize vitamin A and D, and get plenty of vitamin C and vinegar.
Thanks for responding so quickly Paul.
I have found that plain ascorbic acid gives me gas. Altrient C by Livon, a liposomal form, tastes terrible and can cause mild flare in symptoms, which may be due to the lecithins used to make the liposomes.
What is your view on intravenous Vit C?
I used to get flares from starch. Went completely starch free for two years. Tried it once in a while but always got a flare. But one day it just stopped. And now I can eat many types of starch.
For me it seems plantains and cassava works best. Rice and taro not so much.
Im just writing this to give others who read some hope. I remember what a struggle it was.
Thanks Gut,
I have been zero starch for nearly three years but get flares…do you have any remaining digestive issues?
Hi David,
Yes, I still have digestive issues. For example, eating cabbage gives me fever..?? hehe. But they have been going down little by little over the last 3 years on paleo/paleo aip/gaps/phd diet. Two steps forward, one back.
To keep the fighting spirit up I used some strategies that worked for me.
1. Set up a big goal, get healthy again.
2. Break down the goal in a bunch of smaller more easily attainable goals, like learn more about health.
3. Create daily routines that will bring me closer to my goal. Completing the routine counted as a reached part goal and gave me some dopamine release.
4. Do weekly/monthly evaluations on my routines to see if I need to change any.
Some of my daily routines:
Listen to one podcast in health while cleaning/cooking. Robb Wolf, Chris Kresser, Bulletproof etc.
Meditate.
Daily journal.
Eat paleo/phd diet etc.
Get sun and spend time outdoors.
Weekly routines:
Experiment and evaluate. Ideas for experiments came from podcasts, blogs, pubmed etc. Could be keto diet, fish oil, gaps, massive dose of c-vitamine etc etc.
I also think one needs to be able to extract positive emotions from the struggle as well. If struggling doesnt give you positive emotions youre probably less likely to reach your goal. A good way to accomplish this is by breaking down your goal.
And one needs to let go of the hipster attitude “this is so unfair”. The world is what it is. All you can do is to try and change what you wanna change.
Negative emotions as worry, fear etc are great sources of fuel for growth. I do everything I can to avoid problems. But when they come anyway, I embrace it and find both sadness and joy in it. The joy to struggle.
I agree with all of your post and also practice the advice as much as possible, Gut. I found Vits D3 and K2 to be very helpful. These have helped increase movement in some previously very stiff joints, even the SIJs which had bony bridging…I will have MRI results soon, which will give objective feedback about joint health.
Recently I have been trying ozone injections into SIJs and a subluxing SCJ. Have you tried this?
What was your experience with high dose vit c? I had too much digestive discomfort, so cut back to oral dose of 1-2g daily. Have you tried IV vitamins?
Although it slows motility, I have found activated charcoal to help absorb excess gas when it occurs.
I’ve given up on carbs completely, or rather, they have given up on me. I have decided to go Zero Carb for a while just to see what happens. Many others out there who cannot process sugars and starches are doing it with great success (as also are many who can process them but choose not to because they find they function better without them). I have indications that I don’t consume or absorb enough protein.
Early progress is promising…..
I’ve been following Paul’s suggestions since around March/April with very promising results.
My diet at the moment consists of:
beef (as little of the extra fat around the edges as possible; seems to aggravate symptoms),
lamb liver (once a week),
fish: pollock / salmon (once a week) (without skin; seems to aggravate symptoms), egg yolks (egg whites aggravate symptoms),
bone broth (daily),
olive oil,
dextrose (I drink 5 table spoons dissolved in about 500ml of water with juice from a lemon quarter with every meal. I eat three times a day).
I supplement the vitamins as closely as the figures as above as possible.
I make sure I get enough sun and stick to my circadian rhythm.
I try to stick to eating all my meals within 8hrs (10:00-18:00) of the day and therefore fast for the recommended 16hrs every day (18:00-10:00).
On this diet I am really starting to feel like I’m getting back to my old self again. Swelling in places like my ankle and fingers are slowly going away. I try to keep the painful joints I have moving regularly (left clavicle; right foot; right inside wrist; left outside wrist) and try to do yoga on days when my pain is low enough to allow it.
I am currently trying to reduce my salazopyrin (gastro-resistant sulfasalazine tablets) intake gradually (on flair-up days I take six 500mg tablets) to zero, at which point I will try to restore gut flora with sour kraut juice.
This condition is really mean and the recovery goes in peaks and troughs, so stay strong and try to be as positive as possible (surround yourself with positive people and do things that make you happy)!
Sure, the diet is restrictive, but it’s really helping!
I can’t wait to be med- and pain-free; let’s see what the next year brings 🙂
Thanks Paul!
Great to hear of your progress James!
Can anyone provide an update on their health status or progression / remission of AS? Anyone with the HLA-B27 marker that saw significant improvements with PHD or other diet change?
I have PsA, HLA-B27 positive, without (so far) spinal involvement. Unfortunately, my condition had progressed on the PHD. After several years of implementing the diet, I had to stop eating “safe starches” as many more of my joints became involved and my pain, stiffness, digits swelling, and fatigue became almost intolerable. I can honestly say that I gave the PHD a fair trial. It is an easy to follow, delicious, and well-researched program, but sadly not for everyone. Besides progression of PsA, I also gained unwanted weight and my IBS and psoriasis worsened as well.
I have now cut out starches and instead eat plenty of fruits, honey, raw dairy, eggs, seafood, and some cooked veggies. I have also stopped eating meat, just because my body does not seem to enjoy it after years of “red meat feast” of the PHD. I feel lighter now. Although I miss rice and potatoes, my joints started improving, IBS cleared up, and I am losing weight.