Author Topic: Disease Thread  (Read 1978 times)

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Online Pete

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Re: Disease Thread
« Reply #25 on: August 20, 2021, 07:24:20 AM »
Very sorry to hear about this.  I will continue to vote for free medical for all, just like the rest of the Western World.

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Re: Disease Thread
« Reply #26 on: August 21, 2021, 07:54:44 AM »
Is THC an option for discomfort?


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Offline DaBigTrain

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Re: Disease Thread
« Reply #27 on: August 21, 2021, 09:32:53 AM »
Is THC an option for discomfort?


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I’m not sure. I know people use it for other types of pain but would have to do more research. I’ve found some high percentage lidocaine creams that have helped a lot but they are just masking the pain. Anti-inflammatory meds like Aleve help but I don’t want to pop those every day.
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Re: Disease Thread
« Reply #28 on: August 21, 2021, 02:30:29 PM »
Mercy. I know the pain of steroid injections. Had a set of them once for alopecia. Once. I lived with the bald spot a few months until the hair finally returned. Eff. That crap brought tears to my eyes.

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Re: Disease Thread
« Reply #29 on: October 26, 2021, 10:36:11 PM »
Hey guys I've obviously been around but just wanted to give an update after 2 months.  I have been doing a lot better.  After my last update I was doing research that led to a Ted Talk and it referenced a book.  That book is below but it was written by Tara Grant, she has been a long time sufferer of HS and dealt with it for a long time.  Through her own experiences, research and trial and error she has made great strides in the area and has been in remission for years.  Her secret, fighting the root cause(best that we know) of HS which is what is called a leaky gut.  It's probably responsible for a lot of autoimmune diseases.

Through dietary changes alone she has been able to heal herself.  The book does a good job of going through what HS is and how a leaky gut can cause it.  It also has so many horror stories of other people that have this awful disease.  I have made some dietary changes and still working through it but have seen some improvement.  The more and more I research Humira, it is a great drug, but it just makes your immune system suck and not attack itself as much.  That also is a terrible scenario during a time like this.

The thing that struck me the most about this book and approach is she isn't selling anything, isn't saying to take any "miracle" medicines or anything like that.  Just simply taking control of your diet and healing yourself.  Now the diet and approach is pretty extreme but if you want to solve the root cause that's what it is going to take.  So anyway that's the update, thankful that I am doing better because let me tell you, this disease rough ridin' sucks.

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Re: Disease Thread
« Reply #30 on: October 27, 2021, 01:26:57 PM »
DBT i won't lie to you...I didn't see this thread earlier this summer and just saw it now for the first time and as i was reading I was asking myself "do i want to be THAT GUY that chimes in with the whole autoimmune diseases are almost entirely dietary related"? Becuase for a lot of people its not a matter of ignorance its a matter of that not being helpful advice because it is such a major change in how they would live their lives that the bottom line is they are not going to actually implement it.

I'm glad you have found that book...i am not familiar with the author but based on your description it sounds like her advice is very similar to what lots of people familiar with curing rather than treating autoimmune diseases are saying, which is that you need to figure out what is in your diet that is triggering an immune response, and if possible, eliminating it. I would imagine, based on the way you describe the pain that you are in, that the pain would be a sufficient motivator to make those changes.  The hard part is that it can be difficult to determine exactly what it is that is causing the autoimmune response because the only 100% sure way to find is is through trial and error elimination diet.  Sure, they know the top suspects...gluten, dairy, soy, eggs, but its different for everyone.

What i think might help connect the dots for a lot of folks is how Humira is what is perscribed for so many different autoimmune diseases. Psoriasis, Chron's, Rheumatoid Arthritis, i think i've seen it advertised for a couple others but those are the ones i remember off the top of my head...but anyway, i think that just goes to show that autoimmune disorders are essentially just different manifestations of the same underlying cause.

My wife is really into this kinda stuff because a) she's a wacko and b) she has a lot of food sensitivities and she doesn't want to take a million different medicines, and one of her good friends used to have really bad psoriasis. When she started eliminating the harmful stuff from her diet...i think for her it was mostly gluten, it was amazing to see how her psoriasis cleared up without any prescribed medications. The down side is that it takes time and dedication, but my personal opinion is that any autoimmune disease can be cured by determining and then eliminating whatever it is that is triggering the response, because in like 99% of cases it is based on diet.

Sorry this got really long but all that to say I hope you are hanging in there and I hope whatever it is that is causing your autoimmune response is something that you can eliminate without having to just completely change your eating habits.

Offline DaBigTrain

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Re: Disease Thread
« Reply #31 on: June 14, 2022, 10:40:16 AM »
Hey guys.

Long time no update but it’s bad, real bad now. Probably a lot of factors including a lot of stress. The past month and a half I have barely left my apartment. Can barely walk, can’t sit anywhere comfortably and if it wasn’t for grocery home delivery I might have had to have someone stay with me to help.

The good news is, I start Humira tomorrow. I was supposed to start 2 weeks ago but because I got covid like 3 days before I was supposed to start I had to wait. The whole “making your immune system suck” delayed me starting until I was all clear of any infections.

So, I’m really hoping this is the start of getting better. It’s really starting to wear me down. Chronic pain is the rough ridin' worst.
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Offline DaBigTrain

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Re: Disease Thread
« Reply #32 on: June 14, 2022, 10:43:08 AM »
Oh yeah, also, I thought Humira was gonna be $20k a year…. :lol:

Thankfully insurance is covering everything but ~$66k a year. This is the cost for a 1 month supply.

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Re: Disease Thread
« Reply #33 on: June 14, 2022, 10:53:51 AM »
Ridiculous, T's&p's tbt
Hyperbolic partisan duplicitous hypocrite

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Re: Disease Thread
« Reply #34 on: June 14, 2022, 11:32:47 AM »
fwiw you might want to look into AbbVie Assist if you haven't done so already.

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Re: Disease Thread
« Reply #35 on: June 14, 2022, 12:20:51 PM »
fwiw you might want to look into AbbVie Assist if you haven't done so already.

Is Humira considered a specialty drug? You'll probably hit your out-of-pocket max soon, and the cost will come down. I second BAC's suggestion, too. For expensive drugs, a lot of pharma companies will help you hit your out-of-pocket max so that they can just collect from health insurance.

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Re: Disease Thread
« Reply #36 on: June 14, 2022, 12:36:55 PM »
fwiw you might want to look into AbbVie Assist if you haven't done so already.

Is Humira considered a specialty drug? You'll probably hit your out-of-pocket max soon, and the cost will come down. I second BAC's suggestion, too. For expensive drugs, a lot of pharma companies will help you hit your out-of-pocket max so that they can just collect from health insurance.
Yes Humira is a specialty drug. I even got it from the specialty pharmacy. Also, I posted that cost and my obligation for that is $0. So I already won’t pay anything.
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Re: Disease Thread
« Reply #37 on: June 14, 2022, 12:49:50 PM »
oh man, that's a relief. I thought you'd have to pay that yourself. hoping you get better quick tbt. sounds like an awful thing you are dealing with.

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Re: Disease Thread
« Reply #38 on: June 14, 2022, 12:57:51 PM »
T's & P's

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Re: Disease Thread
« Reply #39 on: June 14, 2022, 01:11:56 PM »
DBT i won't lie to you...I didn't see this thread earlier this summer and just saw it now for the first time and as i was reading I was asking myself "do i want to be THAT GUY that chimes in with the whole autoimmune diseases are almost entirely dietary related"? Becuase for a lot of people its not a matter of ignorance its a matter of that not being helpful advice because it is such a major change in how they would live their lives that the bottom line is they are not going to actually implement it.

I'm glad you have found that book...i am not familiar with the author but based on your description it sounds like her advice is very similar to what lots of people familiar with curing rather than treating autoimmune diseases are saying, which is that you need to figure out what is in your diet that is triggering an immune response, and if possible, eliminating it. I would imagine, based on the way you describe the pain that you are in, that the pain would be a sufficient motivator to make those changes.  The hard part is that it can be difficult to determine exactly what it is that is causing the autoimmune response because the only 100% sure way to find is is through trial and error elimination diet.  Sure, they know the top suspects...gluten, dairy, soy, eggs, but its different for everyone.

What i think might help connect the dots for a lot of folks is how Humira is what is perscribed for so many different autoimmune diseases. Psoriasis, Chron's, Rheumatoid Arthritis, i think i've seen it advertised for a couple others but those are the ones i remember off the top of my head...but anyway, i think that just goes to show that autoimmune disorders are essentially just different manifestations of the same underlying cause.

My wife is really into this kinda stuff because a) she's a wacko and b) she has a lot of food sensitivities and she doesn't want to take a million different medicines, and one of her good friends used to have really bad psoriasis. When she started eliminating the harmful stuff from her diet...i think for her it was mostly gluten, it was amazing to see how her psoriasis cleared up without any prescribed medications. The down side is that it takes time and dedication, but my personal opinion is that any autoimmune disease can be cured by determining and then eliminating whatever it is that is triggering the response, because in like 99% of cases it is based on diet.

Sorry this got really long but all that to say I hope you are hanging in there and I hope whatever it is that is causing your autoimmune response is something that you can eliminate without having to just completely change your eating habits.

i heard that carnivore diet really reduces inflammation just because it cuts out plants, which all are inflammatory. could be another bullshit diet fad. googling carnivore diet and HS has few but positive results though.

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Re: Disease Thread
« Reply #40 on: June 14, 2022, 01:23:31 PM »
I think Jordan Peterson did that diet and just based on the fact that Jordan Peterson has mumped up his life more than almost anyone on the planet I cannot recommend it.

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Re: Disease Thread
« Reply #41 on: June 14, 2022, 01:25:43 PM »
DBT i won't lie to you...I didn't see this thread earlier this summer and just saw it now for the first time and as i was reading I was asking myself "do i want to be THAT GUY that chimes in with the whole autoimmune diseases are almost entirely dietary related"? Becuase for a lot of people its not a matter of ignorance its a matter of that not being helpful advice because it is such a major change in how they would live their lives that the bottom line is they are not going to actually implement it.

I'm glad you have found that book...i am not familiar with the author but based on your description it sounds like her advice is very similar to what lots of people familiar with curing rather than treating autoimmune diseases are saying, which is that you need to figure out what is in your diet that is triggering an immune response, and if possible, eliminating it. I would imagine, based on the way you describe the pain that you are in, that the pain would be a sufficient motivator to make those changes.  The hard part is that it can be difficult to determine exactly what it is that is causing the autoimmune response because the only 100% sure way to find is is through trial and error elimination diet.  Sure, they know the top suspects...gluten, dairy, soy, eggs, but its different for everyone.

What i think might help connect the dots for a lot of folks is how Humira is what is perscribed for so many different autoimmune diseases. Psoriasis, Chron's, Rheumatoid Arthritis, i think i've seen it advertised for a couple others but those are the ones i remember off the top of my head...but anyway, i think that just goes to show that autoimmune disorders are essentially just different manifestations of the same underlying cause.

My wife is really into this kinda stuff because a) she's a wacko and b) she has a lot of food sensitivities and she doesn't want to take a million different medicines, and one of her good friends used to have really bad psoriasis. When she started eliminating the harmful stuff from her diet...i think for her it was mostly gluten, it was amazing to see how her psoriasis cleared up without any prescribed medications. The down side is that it takes time and dedication, but my personal opinion is that any autoimmune disease can be cured by determining and then eliminating whatever it is that is triggering the response, because in like 99% of cases it is based on diet.

Sorry this got really long but all that to say I hope you are hanging in there and I hope whatever it is that is causing your autoimmune response is something that you can eliminate without having to just completely change your eating habits.

i heard that carnivore diet really reduces inflammation just because it cuts out plants, which all are inflammatory. could be another bullshit diet fad. googling carnivore diet and HS has few but positive results though.

grats on the first step waks.

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Re: Disease Thread
« Reply #42 on: June 14, 2022, 01:31:53 PM »
i'm just trying to be a bro and give dbt an excuse to eat fatty steaks for bl&d

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Re: Disease Thread
« Reply #43 on: June 14, 2022, 07:52:13 PM »
damn tbt, i’m sorry to read about this.  really hoping humira is the answer to this.
crap like this can have a terrible effect on your state of mind, be sure to get help up top as needed, you need to be clicking on all cylinders to fight this.  hang in there.


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Re: Disease Thread
« Reply #44 on: June 15, 2022, 01:18:43 PM »
Thanks guys.

Had my first dose this morning. Had a shot in each leg, wasn't that bad. Hoping for positive results.
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Re: Disease Thread
« Reply #45 on: June 15, 2022, 01:26:44 PM »
Thanks guys.

Had my first dose this morning. Had a shot in each leg, wasn't that bad. Hoping for positive results.

good luck friend

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Re: Disease Thread
« Reply #46 on: June 16, 2022, 08:31:46 AM »
Good luck bud. Hoping for the best
:adios:

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Re: Disease Thread
« Reply #47 on: June 17, 2022, 06:06:19 AM »
Sorry to hear that this crap is back tbt. I hope you are able to get some relief from the Humira.

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Re: Disease Thread
« Reply #48 on: July 01, 2022, 03:43:37 PM »
Hey guys!

About 2 weeks ago, like 2-3 days after my first dose I started to feel marginally better.  Each day has been a little bit better since then.  I just had my second round yesterday and gave myself the shot and it was super easy actually.  They told me that I probably wouldn't see anything in the first 2 weeks and it's usually between 1-3 months before you really start to see results.  It's already working and just the difference from where it was to now is substantial.  I can walk almost normal now and the pain has gone down dramatically.

Hoping to continue getting better as time goes on but early results are this is just a miracle drug.  My outlook is so much better already and I've really had no side effects of any kind so far.  I have a long way to go but really encouraged this is going to give me a second chance at life I didn't think I would have to be able to live a more normal life.
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Re: Disease Thread
« Reply #49 on: July 01, 2022, 03:44:11 PM »
That's super promising news