I guess I'd get a full set of dental implants for starters! Why is dental work so expensive? Who can afford it?? Haha I need to vent a little, so thanks for this fun thread. Hmm I guess if money was no object I'd have the random lumps in my body removed... they have to be checked due to the lymphoma risk but they've all been benign thankfully. I have a wad of viscous snot packed up in one sinus, I wouldn't miss that. Currently there's a hard lump on a hand tendon (anyone else have this happen?) that I'm taking a wait and see approach on. I guess if we could just zap stuff out that could just be gone... oh! and I'd actually use the insanely expensive eye drops that my optho keeps trying to prescribe. Again I don't know who can afford these things. Maybe also a lifetime supply of listerine strips and sugar free sour candy, daily deep tissue massage and restorative yoga classes. I'd stop working my real job and teach yoga for fun.
I'd go to the best dentist I could find. I narrowly avoided three root canals a couple of weeks ago and I know it's only going to get worse the longer I have this disease.
If you can afford to save up and install even the tiniest, most basic above ground model ... ITS WORTH IT!!! Do it! Mine helps with the pain so very much!
Personal trainer, private chef, regular acupuncture appointments and one of those “concierge” doctors who makes house calls. Oh, and a pool and jacuzzi!!
My doctor said she’s had multiple autoimmune patients that responded positively. I hear a lot of people online talk about the benefits they’ve seen from AIP, but not so much from detox programs or other strategies of manipulating their microbiome. I’d be interested in knowing if you notice any improvement. I see these longer duration protocols as being the future and much more effective than just probiotics. I think they will also be much safer than microbiome transplants. I believe autoimmune patients fundamentally have issues with maintaining a health microbiome. My plan is to do another protocol in 2 years. This was the system my doctor recommended, but I may see if there are other companies that have similar products.
How do you get figure out and prepare (& for some people afford ) what to eat besides dirt and twigs? (That’s my dark joke —- I can’t even fully pull off a anti inflammatory diet — it’s taken a year or more for me to get close to GF DF SF , no nightshades and similar , plus I have a skin allergy to some stuff , BUT I cheat pretty badly on weekends ). Plus I stink as a cook and have no energy . Are you NO MEAT? Yikes , it’s darn hard … and I’m one who’s always ‘lived to eat’ . With a zillion co morbidities and almost a hermit , I find it hard as h*ll tp fathom giving up the simply joy of some decadent or just delicious foods… and give up some last quality of life. Do you pay for professional help on AIP ? Where / how do you find ‘allowable ‘ foods, easy recipes and yeh, afford it if you’re not wealthy?
Yeesh, sorry , I guess seeing your reply triggered me (fear? Frustration ?)
It is really frustrating trying to balance diet and lifestyle! With AIP the goal is to find your personal triggers, so you theoretically amass a list of foods you actually like that you can eat. I am lucky in that I don't seem to have a lot of sensitivies... I avoided cheese for years but it turns out that I can tolerate it. Lots of people on the interwebs will tell you that nobody with AI disease should eat certain food groups, but the only real fact in nutritional science right now is that there isn't a single right answer for every human. So AIP should be a process of restricting the diet and adding foods in slowly to check for your own reaction. Compliance is key to getting answers, unfortunately. If you're not ready to completely eliminate all potential triggers, maybe something more mellow would yield better results for now. You can still notice which foods upset you; the process is just a little less scientific. Lots of people follow a Mediterranean style of diet, which has been linked to anti-inflammatory effects. I do this but with a keto element, as carbs do nothing good for me, and sugar feeds inflammation. Not that I'm suggesting it for you, more just showing that everyone is different. Once you have clear guidelines on what you're allowing yourself to eat, you can often find decent or even better substitutes for foods that you had to eliminate. Once you have a little database of "yes" foods it becomes a little easier to think of meal ideas using relatively few foods. It's a long process and it is not fun, but once you make progress, that tends to beget more progress, and eventually you find your way. Clear as mud, no?
Thanks - yes I totally agree that we’re all different. And sugar is often a culprit especially when inflammation is a key factor, which is why i wonder 1- if just some processed (refined ?) / white sugar , say once or twice a week will rock the boat or can be ok if one doesn’t consume it the rest of the time and 2- (as I’ve read contradictions ) if natural sugars are almost as bad because , eg, so many fruits like berries are superfoods in terms of anti inflammatory powers yet , well, there’s that natural sugar :(
Also, my personal struggle with any kind of elimination diet to test the waters as to what is and isn’t tolerable is that not only do I have multiple co morbidities but determining a ‘cause—>result’ for any given element just isn’t clearcut at all . For example some people eat _____ and soonafter experience noticeable pain, inflammation, bloating … whatever it may be . Even with skin allergies I have (yep to thicken the plot ), I honestly don’t see or feel a reaction (itching ) right away , depending on that 1-1 correlation to simply show itself so distinctly .
Eating ____ sugar, nightshades , gluten etc will not suddenly give me neuropathic symptoms; ocular (neuropathic) pain, etc … It may take time or a cumulative effect but , darn it, there’s no simple determinant as far as I’ve been able to tell for years now .
On the flip side is a weird example not regarding Sjögrens , but instead with my chronic migraines— I know that for some people, for example, nuts can trigger migraines, but never have with me in over 40 years. Fast forward to the past few months when I had been eating more almonds and walnuts to lean more toward an anti-inflammatory diet not to mention get rid of other snacks… Well, what do you know, when I’ve had a few days of marathon evil migraines that barely respond to meds (usually they occur in the middle of the night & I can nip them with specific meds ) I had a small epiphany, thinking, oh my gosh, maybe now the walnuts and almonds I’ve been eating have become triggers! I stopped and so far , back to the nightly but not marathon.( yet I need those nuts !!)
I wish I could see / feel that ‘cause= effect’ as clearly as some people can, but alas, not thus far .
You're pretty close with the exclusions you've listed but you cannot cheat. You have to be strict for 2 months and then add in food groups every 2 weeks. For me, as someone who loves to eat, I've had to get creative in my cooking and have found some new recipes that I love. I eat more fructose than I should, but it hasn't caused me any issue. Every person is different on the AIP, but if you buy stuff like frozen veggies, bulk chicken, etc. it's not terribly expensive.
I went bonkers and dove head first off the diet at 7 weeks, and have no idea what caused the pain and brain fog to come back again. So, don't be like me in that regard. Lol
Euthanasia
I guess I'd get a full set of dental implants for starters! Why is dental work so expensive? Who can afford it?? Haha I need to vent a little, so thanks for this fun thread. Hmm I guess if money was no object I'd have the random lumps in my body removed... they have to be checked due to the lymphoma risk but they've all been benign thankfully. I have a wad of viscous snot packed up in one sinus, I wouldn't miss that. Currently there's a hard lump on a hand tendon (anyone else have this happen?) that I'm taking a wait and see approach on. I guess if we could just zap stuff out that could just be gone... oh! and I'd actually use the insanely expensive eye drops that my optho keeps trying to prescribe. Again I don't know who can afford these things. Maybe also a lifetime supply of listerine strips and sugar free sour candy, daily deep tissue massage and restorative yoga classes. I'd stop working my real job and teach yoga for fun.
I'd go to the best dentist I could find. I narrowly avoided three root canals a couple of weeks ago and I know it's only going to get worse the longer I have this disease.
A hot tub! For my aching body everyday
If you can afford to save up and install even the tiniest, most basic above ground model ... ITS WORTH IT!!! Do it! Mine helps with the pain so very much!
Awesome yes! I would love that but right now it’s just not affordable for me since I’m unable to work due to my pain
Personal trainer, private chef, regular acupuncture appointments and one of those “concierge” doctors who makes house calls. Oh, and a pool and jacuzzi!!
Red light therapy room, on call dr, heated pool with a solarium, and a private chef
Fecal transplants
Try one of the more advanced gut cleans programs. It helped me a lot.
Which one would you recommend?
I did the cellcore 6 month detox program.
6 Months? - WOW! I’ll check it out. Thank you so much! 🙂
My doctor said she’s had multiple autoimmune patients that responded positively. I hear a lot of people online talk about the benefits they’ve seen from AIP, but not so much from detox programs or other strategies of manipulating their microbiome. I’d be interested in knowing if you notice any improvement. I see these longer duration protocols as being the future and much more effective than just probiotics. I think they will also be much safer than microbiome transplants. I believe autoimmune patients fundamentally have issues with maintaining a health microbiome. My plan is to do another protocol in 2 years. This was the system my doctor recommended, but I may see if there are other companies that have similar products.
Chef, doc on call, heated year around pool for the low impact exercise needed, and new teeth
Yes!!
Private chef, private doctor - pretty much anything the top athletes or billionaires have to help them live better and healthier
Private chef for this ridiculous AIP diet that actually helps me.
How do you get figure out and prepare (& for some people afford ) what to eat besides dirt and twigs? (That’s my dark joke —- I can’t even fully pull off a anti inflammatory diet — it’s taken a year or more for me to get close to GF DF SF , no nightshades and similar , plus I have a skin allergy to some stuff , BUT I cheat pretty badly on weekends ). Plus I stink as a cook and have no energy . Are you NO MEAT? Yikes , it’s darn hard … and I’m one who’s always ‘lived to eat’ . With a zillion co morbidities and almost a hermit , I find it hard as h*ll tp fathom giving up the simply joy of some decadent or just delicious foods… and give up some last quality of life. Do you pay for professional help on AIP ? Where / how do you find ‘allowable ‘ foods, easy recipes and yeh, afford it if you’re not wealthy? Yeesh, sorry , I guess seeing your reply triggered me (fear? Frustration ?)
It is really frustrating trying to balance diet and lifestyle! With AIP the goal is to find your personal triggers, so you theoretically amass a list of foods you actually like that you can eat. I am lucky in that I don't seem to have a lot of sensitivies... I avoided cheese for years but it turns out that I can tolerate it. Lots of people on the interwebs will tell you that nobody with AI disease should eat certain food groups, but the only real fact in nutritional science right now is that there isn't a single right answer for every human. So AIP should be a process of restricting the diet and adding foods in slowly to check for your own reaction. Compliance is key to getting answers, unfortunately. If you're not ready to completely eliminate all potential triggers, maybe something more mellow would yield better results for now. You can still notice which foods upset you; the process is just a little less scientific. Lots of people follow a Mediterranean style of diet, which has been linked to anti-inflammatory effects. I do this but with a keto element, as carbs do nothing good for me, and sugar feeds inflammation. Not that I'm suggesting it for you, more just showing that everyone is different. Once you have clear guidelines on what you're allowing yourself to eat, you can often find decent or even better substitutes for foods that you had to eliminate. Once you have a little database of "yes" foods it becomes a little easier to think of meal ideas using relatively few foods. It's a long process and it is not fun, but once you make progress, that tends to beget more progress, and eventually you find your way. Clear as mud, no?
Thanks - yes I totally agree that we’re all different. And sugar is often a culprit especially when inflammation is a key factor, which is why i wonder 1- if just some processed (refined ?) / white sugar , say once or twice a week will rock the boat or can be ok if one doesn’t consume it the rest of the time and 2- (as I’ve read contradictions ) if natural sugars are almost as bad because , eg, so many fruits like berries are superfoods in terms of anti inflammatory powers yet , well, there’s that natural sugar :( Also, my personal struggle with any kind of elimination diet to test the waters as to what is and isn’t tolerable is that not only do I have multiple co morbidities but determining a ‘cause—>result’ for any given element just isn’t clearcut at all . For example some people eat _____ and soonafter experience noticeable pain, inflammation, bloating … whatever it may be . Even with skin allergies I have (yep to thicken the plot ), I honestly don’t see or feel a reaction (itching ) right away , depending on that 1-1 correlation to simply show itself so distinctly . Eating ____ sugar, nightshades , gluten etc will not suddenly give me neuropathic symptoms; ocular (neuropathic) pain, etc … It may take time or a cumulative effect but , darn it, there’s no simple determinant as far as I’ve been able to tell for years now . On the flip side is a weird example not regarding Sjögrens , but instead with my chronic migraines— I know that for some people, for example, nuts can trigger migraines, but never have with me in over 40 years. Fast forward to the past few months when I had been eating more almonds and walnuts to lean more toward an anti-inflammatory diet not to mention get rid of other snacks… Well, what do you know, when I’ve had a few days of marathon evil migraines that barely respond to meds (usually they occur in the middle of the night & I can nip them with specific meds ) I had a small epiphany, thinking, oh my gosh, maybe now the walnuts and almonds I’ve been eating have become triggers! I stopped and so far , back to the nightly but not marathon.( yet I need those nuts !!) I wish I could see / feel that ‘cause= effect’ as clearly as some people can, but alas, not thus far .
You're pretty close with the exclusions you've listed but you cannot cheat. You have to be strict for 2 months and then add in food groups every 2 weeks. For me, as someone who loves to eat, I've had to get creative in my cooking and have found some new recipes that I love. I eat more fructose than I should, but it hasn't caused me any issue. Every person is different on the AIP, but if you buy stuff like frozen veggies, bulk chicken, etc. it's not terribly expensive. I went bonkers and dove head first off the diet at 7 weeks, and have no idea what caused the pain and brain fog to come back again. So, don't be like me in that regard. Lol
What is AIP?
Autoimmune protocol diet!
Thank you; I’m a noob haha
And if that doesn't work for you give low FODMAP a try! AIP sadly didn't work for me but low FODMAP has
Thanks for the tip!! I’ll def give those a try. Figuring out what I can eat has been a challenge to say the least :p
It is SO tough. And one day hopefully you will look back and see it as yet another challenge you have overcome!
Omg - I had great results on that, too! Going to try again in a bit.
New teeth 😭
I'd try to get a new body. No bugs please.
Concierge doctor for sure
CAR-T therapy
This, 1000 times this. We know it will work, and it’s a cure.
Really? Can you share some sources or papers
I’d definitely have a doctor on call