Med question

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Just dx with AS...inflammation in right foot and left knee, unable to walk without boot and crutches. Rheumatologist prescribed Cosyntex, biologic med. Concerned about side effects..anyone on meds for AS and if so, how are you feeling? 

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    I've lived 30 years of my life with AS, and have gleaned enough understanding of my disease to bed her down, permanently. At the high water mark I was bed ridden for a year, went on total disability and had several of my lower vertebra fused. Now I skateboard and pump weights three times per week, and have been disease-free/medicine-free for the past seven years! This disease forced me to learn about my body, which in the long run probably added years to my life as I otherwise may not have learned to lead a healthy lifestyle. Here is how I view disease and it's management...

    I needed to learn that medical management is but one step in the recovery process, and I could not rely on my doctor if I was looking for a full recovery. Doctors use a variety drugs to manage the disease, which in almost all cases are designed to suppress the immune system (NSAIDS, Enbrel, Humira, methotrexate, steroids, etc.). This was important to treat the immunological inflammation and thereby minimize tissue damage, but it did not address the cause and potential cure for my disease..

    I needed to understand the immunological triggers. I once read that we dig our graves with our teeth, and I believe nothing could be closer to the truth. In attaining my remission, I needed to intimately understand what I was eating that was p*****g my immune off. I went overboard for a full year and ate nothing even remotely close to sugar or starch, to the point of not even eating vitamin supplements as they often use starch as a binding agent. This did the trick, however, and I was able to wean myself off my biological (Enbrel), permanently!

    I've since learned alot about disease and have learned to integrate carbs, a vital energy source, back into my diet without ill effects. You just have to be knowledgeable about what is and isn't a healthy carb. Lots of it sneaks into your diet under a multitude of unrecognizable names, monogluto-whatever-amine, etc, so you have to stick to the basics and go 100% whole foods, and this means at the minimum no grains (flour is grain), rye (pastrami sandwiches) or barley (beer). It also means no fruits or veggies that are moderate to high on the glycemic (sugar) index. Here is what happens...

    Spanking new study just came out showing how gluten (the little seeds in grain) sets off an immunological attack in the intestines. Immune cells tag the gluten as an invader (if you can't pick it and eat it, it's not real food), and set off a process of monocolonial expansion to create millions of white blood cells (WBC) that are specifically designed to target the molecular structure of the gluten molecule. These WBC start spraying the general area with lysosomal acids, which will dissolve the gluten and any unfortunate healthy cell in the nearby vicinity. Since this is occurring inside of the intestines, nearby intestinal cells (cilliac cells) are damaged and the intestines start to bleed (this is the basis of celiac disease, IBS, Chrones, uncerative colitis, all intestinal diseases connected to AS). This is also called leaky guy, where the WBC attacking in the intestines circulate in the blood and cause secondary damage to any healthy tissue that carries a molecular structure similar to gluten (cross reactivity). In the study they found that these aberrant WBC cross react with insulin producing cells of the pancreas, which is now believed to be the underlying cause of diabetes. Theorists believe that this is also the likely mechanism of ALL autoimmune diseases which include arthritis (AS). Also remember that fiber is one of the most important things you need to include in your diet (whole orange is good, orange juice is bad bad bad!). Healthy bacteria colonize the large intestines (bowel) and produce nearly 90% of the vitamins & hormones that the body requires. If you starve them out by eating starches, sugars & processed foods, two things happen: 1) the healthy bacteria begin to cannibalize the membrane separating the intestines and the blood stream, which results in intestinal bleeding & dumpage of fecal matter into the blood (where it toxifies the entire body and sets off system-wide inflammation); 2) bad sugar metabolizing bacteria & yeast in the bowel begin swimming upstream and begin colonizing the upper/small intestines (where bacteria are not supposed to be), which causes SIBO (small intestinal bacterial overgrowth). These bacteria release a molecule that holds the permeability window between the intestines and blood stream (where nutrients gain access to the blood), which again lets undigested foods access to the blood and sets off a WBC attack at the intestines (leaky gut). Point here is to get as much fiber (and as little sugar/starch) as possible. In fact cavemen ate (remember that our bodies have adapted to 5 million years of what cavemen ate, which is what we should eat) approximately 10 times more than what the daily recommended allowance is currently set at. You also need to learn about lectins, which are similar to gluten, an indigestible protein that seeps through leaky guts and attach to the cell membranes of tissue throughout the body, and specifically documentd in the joints of arthritic sufferers, where they trigger the immune system with resultant inflammation.

    Several things I also needed to keep in mind. AS is an insidious process, meaning that it is a slowly progressive disease that is characterized my years of low inflammation before it finally gains enough momentum and flairs. In fact most people have recurrent pain and stiffness for around a decade before they are finally diagnosed with AS, which is usually in the late 20s. I also learned, as confirmed in the study, that a little goes a long way. Researchers showed that one helping of starch resulted in six months worth of immunological reactivity, which is why it's been so difficult to link disease to specific foods.

    Last, you will need to give some serious thought to detoxing your system. I did it through laxatives, but recommend that you look up some youtube videos and find a less evasive approach in clearing your system of years of toxin buildup. Be careful here. You will get sick as a dog if you proceed too fast. I took too many laxatives and spent a night worshiping the toilet, which triggered a couple days of intense aches, pains and stiffness (much like stomach flu).

    Last, seek out a functional medicine expert. They are best versed in how disease stems from diet (I follow Dr Bergman of Youtube fame). They can really trace back the source of your inflammation through bloodwork, assess which systems are shutting down, and how to revive them. Holistic medicine is truly amazing. I’ve seen all the “specialists,” but didn’t achieve true health until I stepped away from traditional medicine and healed my body through diet.

    Good luck!

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    • Posted

      Wow...thank you Bobbi for sharing all your information...question, did you think you needed the Embrel or should have gone straight to functional medicine

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    • Posted

      Bobbi thanks for taking time for detailed thoughts. I to, have AS over 30 yrs. A series of allergy blood work came back and the results were surprise. I'm gluten intolerant along with other antigens related to food. Best

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    • Posted

      No problem. I've been around the block and have spent uncountable hours researching. I've finally come full circle, and have learned that diving into particulars is confusing and will delay recovery. If you learn about basic nutrition and avoid unnatural foods, you will learn the key to avoiding classes of foods that trigger inflammatory responses. What is interesting is that even healthy diets will trigger inflammation if you have bad intestinal bacteria and resultant leaky gut. Avoid gluten like the plague, and reduce lectins until you heal your gut. This takes patients, but will put you on the road to recovery. My typical diet is...

      two eggs, one sweet potato, one can wild sardines, one cup berries, two veggie smoothies (no night shades), and 4 ounces of organic beef or chicken. I also eat raw honey and 2 oz of low lectin nuts. If it is not edible in its raw form, it isn't real food.

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    • Posted

      I would go straight to a functional medicine doctor, and begin tapering off arthritic meds as your blood work improves, specifically your SED and c-reactive proteins. Those are hallmark tests for inflammation. You will still have other inflammatory markers high like cortisol, which means low functioning thyroid and overactive adrenals. Here your body is slowing on tissue regeneration (thyroid) due to inflammation, and stressing the adrenals to pump out cortisol to reduce the inflammation. This is where the functional medicine doctor comes in...looking at all your glands and hormones, and then correcting with diet and supplements. Here is the hormone panel you can request from your HMO to get you started and save money on FM labs. They are all recommended to be in the top 25% range of a healthy person, not at a range typical for your age group as recommended by your HMO, because normative parameters were based on average Americans, who represent the most diseased population on earth.

      IGF-1

      Free Testesterone

      Estrogens

      Cortisol

      TSH

      T3/T4 (or preferably free T4, free T3, and reverse T3)

      DHEA

      CBC

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