WELCOME, GratefulOne:
1. We are confused if the muscle pain (which sometimes feels like a pinched nerve), has anything to do with Ankylosing Spondylitis, or is simply just because he has very little bit of right leg muscle.
#The apparent muscle pain has EVERYTHING to do with AS. B27 positive and slow healing injuries along with diverse symptoms SCREAMS AS!
2. We would love to know if you guys think he has Ankylosing Spondylitis. Aside from injuries that took way too long to heal, he has lived a normal life for most of his years. I would like to think his current right leg muscle pain and swollen right ankle has to do with him walking funny from when his right knee was swollen and because he lost his muscle… We do not trust his rheumatologist, that guy just wants to put him on meds.
#The rheumatologist properly diagnosed Your father, but he lacks some of the understanding required to treat this disease most effectively. They want the patient to FAIL on NSAIDs before providing biologics.
3. My dad has to use a cane to walk right now. He wants to start taking his NSAID pill daily for a couple of months so he can work out and eat more things, in order to put back on muscle. What are your guys' thoughts? Is taking 400 mg NSAID (Etadolac) everyday for 2 months going to have any bad effects? I kind of think at this point he is right, and should do this. He is already taking Bromelain, Turmeric and a handful of other natural pills…. Is there anything that can do the same job as a NSAID that is healthier?
#I regret very much my own use of similar NSAIDs!! They (non-selective) greatly accelerated my disease, but Your father is much older than I was. Taking this drug is a very individual choice. However, I recommend trying diet plus proper supplementation: From experience VitD 5000 IU, VitC 2000mg, EVOliveOil 12-18 teaspoonfuls daily especially 4 before each meal. To help eliminate inflammation take 6-8 capsules of BORAGE SEED OIL immediately before bed. NO TURMERIC; it is STARCHY. AVOID starches and please understand that this is a statistical thing: A person with AS will not flare every time they eat a starch, but the cumulative risk will guarantee that AS never goes away! Fasting is the best and safest way to take down a flare. Please use the forum to check out SAFE foods upon returning to foods--4-6 day water-only fast required (losing a maximum of 2 pounds overall; neglecting tract contents which will reestablish rapidly). I recommend KIRKLAND Extra Strength Muscle and Back Pain Relief: Acetaminophen 500mg/Methocarbamol 400mg. Should be over counter please heed all warnings; it's available at Costco Canada and via eBay.
4. What type of test do we need to do in order to see if he has klebsiella pneumoniae or SIBO in his gut, and to get antibiotics?
#Klebsiella tests are completely unreliable and should never be used FOR ANY PURPOSE. SIBO CAN be tested using methane ratiometric tests, but it is time-consuming and not very useful. I cannot recommend these tests AT ALL.
5. I have read many stories here about NSD success. Do most people who do all the right steps go into remission for the rest of their lives, or is the remission for only a couple of years?
#I have followed many people using NSD and as long as they stay on the diet they do just fine. Sometimes they stray, but willing to pay the consequences then and the point is--THEY KNOW EXACTLY how to get out of the AS club again!.
6. He has no symptoms of SIBO, what is the most important path to success? Getting rid of SIBO, healing the gut, or killing of the klebs? I would want to possibly try and kill the klebsiella pneumoniae with antibiotics, and go back on strict paleo (with carbs though) to heal the gut (leaky gut is what I initially read causes autoimmune diseases..)
#I will include my protocol here. I was on antibiotics combined with mostly strict diet for six years and now I am unable to trigger a flare, despite being off antibiotics for over a decade. He can get Plaquenil, which I did when our governor banned it during the plandemic! It is hydroxychloroquine HCQ.
7. Are nightshades bad for everyone's gut, or just people with certain sensitivities?
#Just people sensitive to lectins. I was surprised to learn that I do not have a problem with nightshades OR gluten.
8. Since he is eating starch for now (potatoes, white rice, bananas, cassavas, yams, plantains). Are there any foods we should avoid that make consumed starch more potent?
#AVOID ALL FRIED FOODS, ALL DENATURED (over-heated) OILS.
9. If sugary foods affect him - like deserts. Is it possible for the sugar from fruits and honey to also affect him? Fruits and honey are a part of his daily diet.
#SUGARS should NOT cause problems unless SIBO is extreme. How long after consuming sugar does it take before he feels a flare-up?
10. Are there any downsides of eating more probiotic foods, or a diet low in salt?
#PROBIOTICS contain starchy substrates that promote the growth of ALL bacteria--good and bad. Low salt diets can result in dehydration and lowered stomach acid which is required to destroy pathogens.
11. Sometimes when he has a bad meal, he can tell within an hour that the food was no good. His current swollen joints will feel worse, and other joints such as his fingers and jaw will start to temporarily hurt. Is this normal?
#In my OPINION, he has severe SIBO; the reaction is so quick that it is probable that the germ is established throughout the entire alimentary tract! Even SUGAR will produce inflammation in this situation.
I can only suggest following DIET more strictly and I will include more information on antibiotics, but I would like to have Your rfather enlist the help of a ROAD BACK FOUNDATION physician based--IF POSSIBLE--upon my own experiences.
https://www.dropbox.com/s/mh3lrsm8208glge/ASonlineGUIDE1112.pdfThank You for caring for one of our own!
HEALTH,
John
