Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group The mechanism to full remission of AS?

The relationship between the gut and neuro-immune system fascinates me. Environmental triggers like bug bites can trigger autoimmune disease too by introducing a chronic infection. I would like to believe that if the trigger is removed then the body will restore a healthy genetic expression. It seems to work in some cases. Perhaps in some cases the microbial trigger in the gut has migrated into the cells of other organs thus making diet ineffective.

When I first started getting AS symptoms in 2015 I argued with the doctor emphasizing that the trigger is related to using ibuprofen. I suggested that it interfered with gut function and allowed my immune system to be over stimulated by gut bugs. He said that there is no association between bacteria and AS. One day in 2017 I went to the hospital and he was no longer available. I was told that he went abroad to do research in the relationship between AS and the gut.

Auto-immunity is strongly sex-linked to the X and Y chromosomes, having been pregnant, fertility rate of a population. Any guys here develop AS after getting pregnant? LOL!!

Why Do Women Have More Autoimmune Conditions?


I have used gelatin as a collagen source in general for all connective tissues, not just the gut. Someone recommended that I just use a more concentrated and absorbable powder. I guess either is a good source and can't hurt if eaten every day. I'll go have some gelatin now.

Cheers!
Robin

I think the mechanism to remission lies in clearing out a barstard chronic bacterial pathogenic infection which triggers us with A.S and a combination of healing our GUT linings though what ever method helps, like FMT, antibiotic Protocol(AP), Tumeric spice powder Enemas, Gelatin Enema....

Robin, your thought are interesting. I would point out to you, however, that AS can develop in childhood. I know I was showing early signs by the time I was 14. I ate an extremely healthy diet, was active and young. And at the chiropractor for the pain in my back. Other members here developed it at a younger age, as well. It is genetic, don't forget, and tends to run in families. As does the Crohn's Disease that I also live with. Both come down my mother's line, AS on on her father's side and Crohn's on her mother's side.

I do think there is a gut link involved, but I could hardly have been showing signs of that at age 14. When I say 'healthy' I mean 'uber-healthy'. No refined anything, very small amounts of red meat, lots of fresh veg and fruit, no cakes, no cookies, no potato chips, no candy, no pies, unless it was a special occasion. There was no 'trigger' for my Crohn's as there were aspects of that that I experienced as a young child (recognised in hind sight, which we all know is 20/20); although I did slip on black ice when I was twelve and landed on my tailbone, which I've often wondered was the trigger for the AS.

As to ibuprofen ... again, in my own case, I was not using high levels of pain killers of any kind as a child and young adult. That didn't start on a regular basis until I was in my late thirties. Not that I didn't need them; just didn't take them on a regular basis. I already had both Crohn's and AS fully blown by the time I was in my early 20s, but it flared then backed off. As a student of performance and dance, I injured myself all the time. I put my pain down to that. You have to be taking a lot of ibuprofen for quite some time for the gut to be impacted. I am sorry to hear that you feel it triggered your psoriasis. It can happen that way, I've read.

Considering that the ratio of male cases to female cases of AS is about 7:5 at this point, I'm wondering about your comment on pregnancy -- I do realise you were having a bit of a joke, but it indicates that you think pregnancy is a trigger? It might be for some, I suppose. But I've never been pregnant, so it doesn't apply to all.

And there is my cautionary note. Your case of AS, its progression, its triggers, is yours - nobody else's. Sadly, my triggers cannot be 'removed'. The AS and Crohn's are with me to stay. I have never achieved full remission, despite everything I've done to help myself. Some people do. Perhaps you will be one of those and I hope so.

Love and light.

Hi Inanna, From the research I have done Gelatin and Collagen powder both have all the required amino acid profile which is similar to human cartilage and connective tissue and Gut linings. Amino acids are the building blocks of proteins.

Having enough or supplementing yourself with these essential amino acids will improve the health of all the tissues in the body. I Have noticed after like 6 months of religiously taking gelatin my skin started to glow in completion and was much better looking.

If you research further on Bone broth soup you will find people saying its really healthy for the gut, but what is important in the bone broth soup is the bovine gelatin
Released from the bone of the beef, which helps the gut linings.

Ok as for gut involvement if you want to prove it to yourself you can do a home distilled salt water enema, 400ml of medical grade distilled water and 2 tea spoons of table salt
Hold it in for 5 to 10 minutes and massage your tummy lying with your legs elevated durring this time. Then release the water in the bathroom. If you feel high pain relief then you will know that the GUT plays a role indeed.

All the best

Lee

Hi Guys

What I have come to realize is that we with AS have an immune system that is very sensitive to a bacterium or a group of bacteria which sets off a chronic reaction stemimg from an infection/Injury.

I believe my AS started about when I was 10 years old I hit my tailbone very hard on a brocken couch which resulted in a fever and thereafter chronic SI joint pain at the age of 13

Hi L33,

I looked into your comments about collogen and gelatin. Yes, they can help heal the gut. However, some of us also have Crohn's Disease and in those patients, added collagen might be counterproductive. We already produce more collagen than is optimal. Medications like glucocorticoids (Budesinide, Prednisone) can help with this over production, but they inhibit the gut's abiilty to regenerate and heal.

This over production of collagen results in collagen fibrosis, an overgrowth of collagen, in Crohn's patients. This can lead to adhesions that restrict the bowel, sometimes completely. I can tell you personally, that they are no fun and had to be removed surgically. Because my Crohn's was undiagnosed at the time, my surgeon asked what could possibly have happened to me as a child to have adhesions so thick and rigid as mine. Nothing happened ... except my undiagnosed Crohn's which I now know I have been living with for 50 years.

For interest sake, I am HLA-B27 + and my AS is also genetic. It was triggered by a fall on black ice when I was 13 or so. I was in chiropractic care within 18 months of that.

All we can do is share our experience, share our information. But please do not go on the assumption that we are all the same and will benefit from the same things. I hope collagen helps you. I'm sure it would be helpful to a large portion of our society. However, it will not be beneficial to me. And I am not doing another enema until my GI specialist makes me. lol

Light and love.

Hi Inanna.

I never meant to imply that genetics isn't a factor and that we are all the same. By now most people understand that many diseases are caused by an interaction between genes and the environment. The trick for some of us with easily triggered immune systems is to avoid allowing the environment past natural barriers like skin and gut. The gut gives us the long-term exposure. A friend of mine recommends a fecal transplant.

I also can see how injuries can set autoimmunity into motion in many ways.

Regarding pregnancy's connection to autoimmune disease, I actually remember the video explaining that pregnancy reduces likelihood of autoimmune disease and that having the first child later in life, or none at all, increases the likelihood of autoimmune disease. Since your AS started by age ten so I don't think pregnancy would have saved you.

Perhaps I began showing symptoms by the time I was 23 years-old but the doctor said it was “fibromyalgia” and I just learned to cope with it until I was 45 years old when a rapid sequence of events happened within a year: 1) probable exposure to bartonella, 2) a scuba accident causing a marine infection in the nervous systems, 3) about 18 to 24 months of increasing use of ibuprofen. Even an old infection of EBV is active. Maybe that was the "fibromyalgia" at age 23. I had a three week fever before developing "fibro." So I would just chalk up my autoimmunity to an accumulation of “living” combined with sensitive genes.

Being ketogenic (meats and non-root veggies) keeps my symptoms minimized but doesn't stop disease progress. I joined KickAS in 2015 (I was 47) and have been on a constant decline. I was reasonably stable from age 23 to 45. I've never actually been diagnosed with any autoimmune disease but neuropathy has been recognized in the past six years. It seems more like an undifferentiated SpA from my mother's side since I have female relatives with similar complaints, but mine are the worst. I've never been pregnant.

Cheers!
Robin

Hi Robin,

I'm curious as to why you've never been diagnosed with an autoimmune disease. Is there some reason you've been given by your GP for not getting you tested to find the root of this?

Psorasis is immune-based and neuropathy doesn't generally occur without an underlying cause as far as I know. Sounds to me like you need a competent clinician to take a look at you overall, instead of one symptom at a time.

Love and light.

Hello Inanna,

Starting in Sept 2013 I began seeing doctors after a scuba accident. For the first three years of seeking help for sinus and gut problems I saw specialists in the fields of ENT, gastroenterology, neurology (just the first six months), TCM, and rheumatology. In June of 2015 spinal pain was very bad. It was mostly under the base of the skull. A language interpreter took me to Tong Ji Hosptial in Wuhan. The hospital is one of the best. I tried to get my interpreter to emphasize the base of the skull when communicating. She failed to do that. She was too busy texting with her friends. The rheumatologist only ordered an MRI of my sacrum which showed inflammation but no degradation. He concluded that I don't have AS. By July 2017 I had about 50 appointments across about eight specialties with about twelve individual specialists. For the most part, CT, MRI and blood tests could not identify any disease. In late 2015 the head gastroenterologist wanted me to see a psychiatrist. I did so just to show her that nothing will be discovered. Boy was I wrong. The field of psychiatry is crazy. There is no testing but they are ready to prescribe pills. The doctor was convinced that my gut issues, spinal and sinus pains were caused by anxiety and depression.

During 2018 I began "Googling" my symptoms and a nurse in Virginia saw my desperate comments that I put on a mold illness YouTube channel. She said, "You have exactly what I have but I have extra symptoms. You have Lyme Diseases and I have Morgellons Disease." I learned about Lyme and discovered that people that get bitten by wood ticks often get babesia and Cat Scratch Fever (CSD). A light bulb went off and I recalled that only one week after the scuba accident I babysat a kitten for one week that was flea and mite infested. It was recently adopted from the street. I gave it vet-prescribed external meds for the parasites. I even had to take it to the vet one day and that is another story! I played rough with it and allowed it to scratch me a lot. My girlfriend told me not to do that because she feared that I could get a disease. I mocked her. It was her kitten and she had me take care of it while she went traveling with her family. A little, sick kitten in China is an ideal carrier of CSD. All those years I was living in Wuhan and seeing doctors there. In January of 2018 I even took a high speed train two times to Shanghai covering 900 km in 3.5 hours to see an ENT, GI and internal med doctor. By then I finally was getting occasional tingling in the bottoms of my feet. The GI doctor put me to sleep and put a scope up my but. Strange inflammation was observed only in the rectum. The colon was fine. The internal med doctor suggested "cluster headaches." I told him about the kitten incident. He said that the hospital didn't have a lab to test for CSD. In the summer of 2018 I went for parasite testing at Tong Ji Hosptial. All negative. However they didn't test for marine parasites that I could have picked up during the scuba accident. Over all those years tests from all the doctors were negative except for a brief period of elevated liver enzymes and swollen gut lymph nodes while I was using too much ibuprofen during 2014 and into early 2015. My health was beginning to decline fast and so I returned to Canada in July 2018 to make a will and tie up loose ends.

The medical system in Canada frustrates many Canadians. I like to say, "It's free but just get in line and wait to die." Medicine is rationed to us peasants. It took three months to find a new family doctor upon returning to Canada. Three interviewed me and were overwhelmed by my story and symptoms. The first two would not accept me but the third decided to keep me. He referred me to an internal medicine doctor that had a reputation of being abusive, narcissistic and sadistic. You get what you pay for! I waited about five months to see him and after two visits he got out of his chair and yelled at me. He had fired me. Not long later I had a minor reason to see my family doctor and so I also brought up my lack of having an internal med doctor. He grinned and said, "I read the letter he sent me." I asked for a new internal med doctor by name and I got the referral. In February 2020 the new internal med doc listened to my story for three hours. I believe that I waited half a year to meet him from the time of my referral. He had to close the clinic. He didn't need that long but he really shot the [*bleep*] with me because of my experiences in China. He took great interest in the scuba accident and said, "I think you have parasites." He also said that the parasites are causing epigenetic changes. He tried treating me for CSD. So did two naturopaths. All treatments failed.

A few month before I left China I made appointments with an ND in Canada. I saw him a month after returning. He took blood and sent it to a lab called Armin Labs in Germany. It used T-cell testing that is accepted in Europe. I tested with weak positives for Lyme disease, CSD, babesia, mycoplasma pneumonia and EBV. Canada used antibody testing for Lyme, CSD and EBV. Canada only verified EBV.



Back to the Scuba Accident

I was resurfacing through a change of four atmospheres and seawater got into my left inner ear. It evolved from congestion in the left eustation tube with scalp and facial twitching on the left side of the head. Obviously something got in to effect cranial nerves. Probably an intra-cellular marine parasite. Then a month after the accident I developed throat inflammation like noting I ever had before in my life that doctors couldn't understand. Then finally a wicked thunderclap headache three months after the scuba accident. The intense, thunderclap headache lasted for a week though I felt pressure building in my head for a couple of months before the sudden "clap." A neurologist said that I had a mild TIA. Then I developed spinal pain and gut dysfunction but the gut problem was exacerbated by daily use of ibuprofen that slowly increased in dose for 18 months after the scuba accident. Early on, after the throat inflammation, I had what I believed to be sinus infections/problems. I was seeing neurologists and ENT doctors. All the ENT doctors could only see inflammation in a CT scan but no sign of infection. I was tested for allergies and results were negative. Finally in 2016 an ENT doctor said that she thinks my sinus issue is neurological in origin. When she told me that I thought that she was implying that "its all in my head"; meaning that I need a psychiatrist. Now I realize she really meant that something was wrong with my cranial nerves.

The internal medicine doctor that my Canadian family doctor refereed me to after I had been fired by the first has a very good reputation. However by December 2020 I had given up on medical experts. I had seen him face-to-face only once and then had two telephone consultations with him during covid. His last words in December 2020 were "Send me an email if there are any changes." My last words were "There are changes every month!" I gave up. However I can "feel" the need to contact him.


Blinded by the Light!

There are so many experiences that this body has had. Only a year after the scuba accident, the TIA and a moment of blindness I reached just over 17,000 feet on Mt Everest. Did I ever get a headache! But it wasn't so new anymore. In January of 2014 (just one month after the TIA) I was jogging at night. While I was running I noticed that I could not see the colours of lit objects that I was familiar with. Everything was just black and white in a state of high contrast. Street lights were super bright yet I couldn't see anything else. I was going blind. I found a park bench to sit on. I was disoriented and didn't know where I was so I took my smartphone out of my pocket to check an online map. When I pressed the on button instead of seeing a screen full of icons I was blinded by white light. My vision was malfunctioning. I don't know if it was a lack of oxygen to the retinas or something in the brain. My vision recovered after about eight minutes of sitting. I simply walked home and went on with life. I also recall a day months after the TIA I was walking to work with a co-worker and for about five seconds I could not engage my vocal cords. As soon as I was able to speak I said something like, "Would you believe that I couldn't speak for about five seconds?"

I think back to a fever that I had for three weeks in the spring of 1992. I was bed ridden and sweat it out. I suspect that is when I picked up EBV and began having chronic pain and fatigue. In 1993 I was diagnosed with fibromyalgia. Prior to that diagnoses I was having symptoms of IBS, burning in my body and I think thoracic spine pain. They made my family doctor order tests for "arthritis." I thought that was strange because I was in my early 20s.

The bottom line is "life adds up!" I should have become an academic earlier in life and avoided animals, wood ticks, scuba diving and anything that hurts the gut. Sky diving would have been a better adrenaline sport.

Cheers!
Robin