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Low back, neck and jaw pain.
Hi I'm new to the forum and wanted to see if anyone could offer advice/suggestions. I took accutane for 3 months about 4 years ago. Since then, I've had SI joint pain, thoracic spine pain, TMJ pain (right side only) and my neck is constantly cracking. My body just doesn't feel good to live in. I was diagnosed with ankylosing spondylitis, then told by another doc that it was a misdiagnosis. That was 2 years ago. Can anything be done?
For sure, you can do a lot and feel way better.
How old are you? What are you eating? Supplementing? Studying? How much have you read Grant's books and his forum posts? Have you seen Garrett Smith's livestreams on youtube yet?
I was 61 when too much WAPF tore through me with sacroiliitis. I ate beef liver. I went down hard 11/2022. Screaming pain unable to walk, lay down or sit. Had to press down on counter top to stand. The traction letting my right leg dangle was my only relief. Held that position 18 to 20 hours a day all of December, 2022 and January, 2023.
Required a walker to get to vehicle to get to chiropractor. He helped eliminate other diagnoses like herniated disc, kidney issues,..... Narrowed it down to sacroiliitis. I suspected vitamin A poisoning from other symptoms and searched around. The pain was frequent and horrific. December, 2022, I slept 3 or 4 times a night for 15 minute naps until the pain woke me up howling, grunting and grinding.
Eric Berg and Ken Barry were zero help. Chris Masterjohn was a little helpful with diagnosis. Judy Cho's interviews with Grant and Garrett were genius stuff. Grants books were crazy helpful. Realized I needed experienced folk to guide me through. Contacted Garrett on livestreams and twitter. Argued with Garrett for weeks.
He insisted it was a simple thing he had seen and helped resolve often. Told him if it is so easy then get me studies and papers on it. Gave him 24 hours. 20 seconds later he hit my email with tons of papers and case studies with just the first hits on a google of "isotretinoin induced sacroiliitis." Apparently a huge percentage of kids on accutane get sacroiliitis so bad they require walkers after the first couple weeks. It is routine.
Told Garrett, fine, I am convinced. Now if it is so easy for you to coach through this then you have clients who resolved this and are doing well who will talk to me. Put me in contact. 20 seconds later I got a link to a guy in Michigan going through the same about 6 months ahead of me. Spent half hour exchanging with him. He is still improving and still ahead of me. That was 20 months ago. There is a growing group of us who fixed this problem. Almost everyone of us also fixed problems going back years.
In February I got my first full REM cycle and slept a full 90 minutes before the pain hit. After that sleep I knew I was on to something. March I got my first sleep beyond 3 hours. April 15, 2023, I slept 10.5 hours straight and woke up without pain. Hung up the walker. That fall, I ran an 11 minutes 29 second mile. Later I outran the neighbor's 5 year old in a 40 yard dash. Little beggar is 6 now and speeding up. He outran me by a step last week.
Suggest for now focus on SI joint. I had a ton of other symptoms during and after that resolved. Plenty that can be done. Focusing on that and what worked for that was key until that pain resolved.
Feel and work better soon.
I'm 22. I basically eat a version of paleo that's mostly animal foods. Red meat, eggs, some quality whole fat dairy, and then fruit rice and potatoes for carbs. I supplement creatine and vitamin d. I haven't read or seen too much. I'm glad you got better. What did you do that helped, and/or what would you recommend doing?
Quote from Jack on September 14, 2024, 3:53 pmI'm 22. I basically eat a version of paleo that's mostly animal foods. Red meat, eggs, some quality whole fat dairy, and then fruit rice and potatoes for carbs. I supplement creatine and vitamin d. I haven't read or seen too much. I'm glad you got better. What did you do that helped, and/or what would you recommend doing?
I recommend reading / studying like your life depends on it. Grant's books are an excellent start. Free e-book on line. Most pdf's have read aloud functions that let you work and listen.
Listening to Garrett's livestreams on youtube are good. I think he is up to 162 videos now. #toxicbiletheory is a good place to start.
If you can grok basic concepts and want to learn more, Garrett's blog is $100/year and gets you access to a few hundred of us improving as fast and as well as we can. Some of their testimonials are posted here. More will be soon. Invaluable to talk with people with similar problems and more experience with resolutions.
One of the most valuable aspects of the $100 subscription is access to the LoveYourLiver lessons. Every one needs a different protocol. LYL lessons helps each of us write our own protocol. What works for me may or may not work for you. Example- I am 3 times your age. You have access to a couple ideas I would not dare try. AND, you are going to recover ALOT faster than I am. And you will be many times wiser and smarter than I was at your age. Scratch that, you already are. You are here.
I am not familiar with your past diet or your body type. I am familiar with my own. Hope some of what is here translates.
https://ggenereux.blog/discussion/topic/lutein/#postid-27500
Almost forgot. Garrett has a number of threads on related topics on twitter that are concise. @nutridetect
With all that in mind and recognizing the little I know about you, I would drop the eggs, work my way off the dairy and potatoes. I would decide and move to either over70% fat intake (keto) or under 10% fat intake (or as close as can be). Denise Minger has an interesting take on where fat intake figures into it. This would be better titled "In Defense of Low Fat or High Fat but not the Middle"
(26612) Denise Minger - In Defense of Low Fat - YouTube
Hope this is whelming and helpful.
Oh. Almost forgot. One of the most helpful tips I got from sempai on LYL is to make one change at a time and to go low and slow. Unless you know your are dealing with damage. Like do not slowly stop taking accutane or eating liver. Do that now. But adding ina supplement? Take a capsule of said supplement, open it and take a tenth of the powder inside, once a day for a week. Now bad changes come on? Double it for the next week. And so on. Then once up to speed on taking that supplement, evaluate what good it does against what theory drove the choice to take it. Do that with one idea for as many weeks as it takes and move on to the next great idea. In the LYL lessons, that is noted as the "order of adding stuff" list. It is an algorithm of sorts for people to work through to decide what they will and will not do in the process.
Have a good one and let us know how it goes.
Someone on LYL thought you will enjoy this.
People are thinking about you.
He also sent these.
and this
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Tom
Tom 19h
Member
If he searchs "accutane" on the Nutrition Detective channel he can find many more live streams that have accutane timestamps in the descriptions
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Welcome to the site, I'm glad Joe is telling you about LYL, there is also a Facebook group of people who have their own ideas, there is a new Discord group, and some people just duke it out on their own with the simple notion of cutting back on VA sources, supporting themselves with a healthy lifestyle, and patiently waiting until detox takes place. I'm in that last category (although I never took accutane, I think I've been VA-overloaded for my entire life).
The search feature is fun to try here and also you can read people's ongoing updates. If you find there is a topic about something you want to talk about, you can post on it and try to get some new discussion. If there is no existing topic, you can start one.
VA overload isn't really a new idea, but yet for some reason it takes everyone by surprise. I think just realizing It's a Thing is the biggest step forward. The body has its own wisdom too. As long as we are on this side of the dirt there is room for hope regarding healing the damage that has been done.
Can someone in a nutshell explain to me, like I was a kid, what is going on here, the connection between the spinal/disk problems and VA?
So many people around me have these issues and I wish I had an "elevator pitch" explanation.
Is it just basically that VA overload creates weak bones and wimpy cartilage?
I argued with someone who cannot be named for a month on this topic. He said he did not do "mechanisms." He was interested in what works, not so much how. Told him if he was right about my sacroiliitis being caused by retinoids, that he could give me a science paper, study whatever to that effect. Gave him 24 hours to email me a link. 20 seconds later, he gave me pages of links with a simple google search for "isotretinoin induced sacroiliitis."
I read those and came back at him. Said ok if you are so convinced this is what is wrecking me and that it is so easy to repair, then you have a list of satisfied customers. Gave him 24 hours to put me in touch with one. 20 seconds later, he gave me a guy 2 states away who was 6 months ahead of me in treating isotretinoin induced sacroiliitis. That guy is still one of my better mentors. My progress has been great and I still have not caught up to him yet. There is a huge and growing list of us successfully treating this. Something like 1/3 of kids prescribed accutane require a walker within a month of their first dose. So far they all recover when they discontinue. These are usually the kids who take the least and are told accutane is not for them.
Not sure that helps. Perhaps it explains why and how I am so determined that "moderate vitamin A intake" is such a bad mistake.
I get it that sometimes you don't have to know the "why" if a method works. It could just be about the incessant inflammation. Especially if it fixes up fast. I would assume bones and cartilage take a while.
Quote from lil chick on September 27, 2024, 6:44 amI get it that sometimes you don't have to know the "why" if a method works. It could just be about the incessant inflammation. Especially if it fixes up fast. I would assume bones and cartilage take a while.
It can be any number of things -toxins. My fifth month in to depleting retinols, Doc put me on to understandingb6toxicity.com.
Almost made me cry as much as Grant's books. I was numb, tingling, burning from the knees down. Went to work on that as well as copper and retinoids with all the methods and mechanisms we already felt confident about. I was walking without a walker but could not feel my footfalls. Kicking in on the B6 issues got immediate improvement. 16 months later, I have a small section of my right foot still crazy sensitive. At least now I can run. Outran the neighbor's five year old in a 40 yard dash. Little jerk is 6 now and beat me by a stride last month.
Point about the mechanisms goes to the logic involved. Reductionism works but only after the fact. It is important to learn the mechanism, after the fact. Looking for mechanisms is like the general who is always fighting the last war. Wars are always fought differently - usually with much different tech - than the last war. The term for the generals who stick to fighting the last war is always "retired" or "dead." The generals who learn the last war and fight with all the new tech are still alive. This is a hard lesson that I have to learn every time confronted with hard problem. It pays to quit focusing on mechanisms. It opens us up to recognizing a whole lot of possibilities we were not looking at because we wanted mechanism.
There is some good evidence here of people trolling (knowingly or not) by insisting on mechanistic thinking or nothing all day. Grant could have done a successful experiment in his garage for 10 years with a herd of gerbils and he would not have convinced a single soul of these reductionist folk. They will never see their own biases because they see no mechanism causing it.
Hope you feel better soon and come to me a year later and tell me your best guess for the mechanism that made it happen. Meanwhile, take a look at understandingb6toxicity.com and DO NOT try their supplement ideas.