Auto-Immune Paradox

This may not be the appropriate forum! That's okay, I'm hardly an appropriate poster.

I have mentioned in days of yore that I suffer from an auto-immune disorder called dermatomyositis. This literally translates to inflammation of the skin and muscles. Think lupis, but focused on the muscular tissue instead of the connective.

Oh jeez. I first started suffering my first year of college. I slowly became all scaly and red and skin was cracked. I had trouble walking up stairs and carrying my books.

It took a couple different doctor visits to get a correct diagnosis. One finally said "Oh! Yeah! I know what this is!"

It's actually very rare for teenagers to suffer from this. It's more common in infants and the elderly. Well I'm an ancient manchild anyway so whatev-

I am having some symptoms now after about 2 years without meds. I could not afford medication and doctor visits and labs regularly (mostly because my insurance sucks and it's hard to find a specialist who accepts my sucky insurance.)

Simply cannot dole out 500 dollars every 3-6 months for this stuff!

But now I am markedly red and weaker than usual.

So I am here thinking, do I really need to pay for prescribed immune suppressants? Aren't there ways I can suppress my own immune system? If that's all it's really doing?

I started eating healthier as of late and started buffing up on the vitamin thing. And that's when I started feeling terrible.

Maybe, just maybe the most basic logic is elusive in this case-

Perhaps I can suppress my own immune system like I've been doing these last few years. Lots of alcohol, double bacon cheese, and long nights of carousing before long days of stressful work.

Have I found a cure for immune disorders big pharma won't tell us about?

Get out there and live! Suppress that immune system the way nature intended!

I'm sorry, this may be wrong and you shouldn't listen to me as usual, but I'm just sayin'--I have never felt better than when living like a slob.

I am super curious how others are dealing with their auto-immune disorders. Have you found anything that works? I have tried the healthy way and wheat free etc. That seems to stoke the fires here (on the bright side, it does make a good case for immune boosting if that's what you need.) I do not think this will work for me unless I am on meds; and then, it is really the meds doing the work.

I am literally every night having discussions with my immune system "Heyyy, guys, it's alright. I don't hate myself. Why can't we be friends now?"

a reply to: NarcolepticBuddha

Rather than doing that have you thought about trying HBOT? It seems to have some productive anti-inflammatory effects it has also been shown to effect gene expression specifically genes regulating immune function and inflammation. Just a thought. Also have you tried CBD oil? Probably legal where you live??

a reply to: Charlyboy

I will hit google and try to learn about what you're saying here. Thanks for the post.

a reply to: NarcolepticBuddha

www.hemptouch.com...

www.dailystrength.org...

archive.rubicon-foundation.org...

a reply to: NarcolepticBuddha

You should be wondering if your disease is not psychologically triggered.
Your "solution" seems to indicate that.

a reply to: Aliensun

Well, I do not believe so. If so, we enter metaphysics.

I am also a cancer survivor if you didn't know. There is a scientific correlation between a couple things here: cancer, auto-immune disorder, and narcolepsy.

My research has suggested these 3 things have a weird relationship with one another. A veritable 'manage a disease.'

And these three disorders have also pointed me to an iron overload in the liver...hmmm

I do not dismiss the metaphysical and psychological, but its counterpart is definitely there in the physiological and biological as well.

a reply to: NarcolepticBuddha

What meds do they prescribe for it?

At least what category of (steroids) I presume?

a reply to: IgnoranceIsntBlisss

meh, basically corticosteroids for short term relief and immune suppressants for long-term remission.

I was also prescribed an anti-malarial...which I never understood, but I'm not a doctor so I'm sure it was for some good reason.

a reply to: NarcolepticBuddha

You can OTC Dexamethasone for cheap. Try the Google right now.

a reply to: NarcolepticBuddha

Make sure it's not long term Lyme disease which is usually treated by taking strong doses of Doxycycline over a really long period of time.

Long term Lyme is often misdiagnosed to 100 different other diseases. You really need to look at Lyme disease and how it functions.

originally posted by: NarcolepticBuddha
a reply to: IgnoranceIsntBlisss

meh, basically corticosteroids for short term relief and immune suppressants for long-term remission.

I was also prescribed an anti-malarial...which I never understood, but I'm not a doctor so I'm sure it was for some good reason.

Same exact things happen over time when Lyme disease is not treated initially. Long term Lyme disease is very different than when you get the bulls-eye rash.

Have you ever though of changing your diet?
I gave up wheat and milk and my eczema and asthma really improved. Not saying it will help for your condition but it might be worth a try as wheat is well known to cause inflammation.

a reply to: Dr X

Auto-Immune is no joke.

Natural anything doesnt work an impression I've come by.

To lower the function of the immune system, you can use a few different ways. You can lower calcium consumption a bit, there is no calcium in alcohol and it is a diuretic so washes the calcium out. Just stay away from high calcium foods, grains are actually high in calcium along with milk. We need some grains and some of the chemistry of milk so do not quit dairy all together nor delete all grains from the diet, you may have to adjust the type sometimes.

Calcium is used by receptors in our cells to pump ions in, calcium and glutamate are part of the energy transmission valves from what I understand.

Also, some meds to treat autoimmune diseases lower folate use, this lowers methylation. Eating dark green leafy veggies containing lots of folate might not be good for the autoimmune diseases. Vitamins containing folate or folic acid might not be too good to take all the time either. But some minerals are good, they mellow things out.

I have high risk of lupus and RA, I do feel the symptoms a bit if I eat what they say is good for us. My cousin died of Lupis, I have the genes but am alive, I guess he was eating too healthy. My sister had RA.....looking back, she loved breads and milk, two high calcium foods. A person with autoimmune diseases should not take calcium supplements, they may make it worse. Also not overconsuming glutamates and glutamines is important, we need some of these, people with autoimmune diseases may have to have less. Tyramines can be a problem with autoimmune.

You may be able to try a proteinase like bromelaine to get rid of the inflammation. You do not need a high dose, just enough to do the job. Bromelaine will destroy the lypase in your gut, it is a protein. So it can cause you to not get energy out of lipids in the diet. Sugar foods do increase cellular activity, they are fuel, if you reduce the activity of the receptors, then the sugars can lead to other problems. The whole thing is that altering diet to a better diet as described by nutritionists can cause more problems with some with autoimmune and other genetic inconveniences. I do not like to call them diseases, the disease never has to be activated if you eat the right diet for your genetics.

Talk to a healthy close relative, sometimes they have a similar genetics and they do not have the negative gene expression because they eat right for their genetics. I do not usually like to eat much of the foods that trigger autoimmune diseases anyway. Alcohol is a tyramine, be aware of that, it is an aged food. It can also make autoimmune diseases worse by supplying them with power. What they add back to flavor the booze actually is very active in autoimmune diseases. Beer contains proteinases to keep it from clouding when cold, either papain or bromelain, those can contain some chemistry to lower inflammation.

Ok, done, just some hints, I cannot tell anyone what to eat, just give information as to how things work and maybe do a suggestion of something to try.

One thing, maybe taking a multimineral tablet daily would be a good help, I cannot take a multivitamin tablet every day, I only take one a week in place of the miltimineral tablet that day. Make sure it contains molybdenum, at least 70% DV.

In searching for a low cost treatment for your DM I came across a list of clinical trials. I know right?
However only you know what you've already tried so scanning thru these you may find something you haven't tried ?

www.rightdiagnosis.com...

Worth a shot.

If your immunities are acting up on your skin and superficial muscle it may be reacting to an ingredient in your soap. Is the inflammation consistently on specific parts of your body?

Stress is the most common cause of excessive immune response. Stressing about what you eat and judging yourself is probably one of the leading causes of stress - so perhaps your drunken tirades liberate you from this self-judgement. relax and stop judging yourself, but still strive to have peaceful nights and eat raw food to help balance your body.

originally posted by: NarcolepticBuddha
a reply to: Aliensun

Well, I do not believe so. If so, we enter metaphysics.

I am also a cancer survivor if you didn't know. There is a scientific correlation between a couple things here: cancer, auto-immune disorder, and narcolepsy.

My research has suggested these 3 things have a weird relationship with one another. A veritable 'manage a disease.'

And these three disorders have also pointed me to an iron overload in the liver...hmmm

I do not dismiss the metaphysical and psychological, but its counterpart is definitely there in the physiological and biological as well.

Just so you know, I'm also a cancer survivor and a heart attack survivor. You should also know that metaphysics is real in about every aspect that can be considered.

As for myself, both of my diseases came with two years of each other and about two years after I lost my wife of 22 years to breast cancer.

I blame the stress of her situation and her loss for my allowing my diseases. To not associate real conditions to events of the mind is a very narrow way of looking at the real reality. Most of our thinking is by the unconscious mind and it can be downright self-destructive on purpose or allow other aspects to sneak in and work sabotage.

Read a book called the Plant Paradox by Dr Gundry, it could change your life! He explains how most autoimmune diseases start in the gut, and how our diet is responsible. Lectins over time penetrate the gut wall and trigger an immune response, causing autoimmune disease. Harmful lectins are found in wheat gluten, dairy, legumes, nightshades and many other supposed healthy foods. This book is a must read for someone with an autoimmune disease!

My comment should be taken with a grain of salt, I have no auto immune issues I know of.

Never been diagnosed with anything other than like being bipolar and ADD when I was younger but there is something very wrong with my stomach they just can't figure it out. But I did see a specialist every month for most of the year and we ran test after test that always came back negative for any issues. Well that's cost me quite a bit of money on top of what I pay each month just to be insured so I haven't gone in a few months- and my kid has his own specialists he has to see for speech so his needs come first out of my wallet.

SO i Know what you mean about not having the money for all that jazz.

The only time's i'm not sick every single day are when I go out and hustle and grind and move all day long and eat whatever junk food I want.

But clearly that doesn't work for half of my girlfriends so maybe it boils down to my metabolism.

Maybe you're on to something though.

-Alee

a reply to: NarcolepticBuddha

Antimalarial can help reduce skin rashes (I just read you never understood why you were prescribed antimalarial tablets).

I don't live in the US and I don't know how every insurance works, but I would urge you to go to a doctor and take your immunosuppressives. I don't know much about Dermatomyositis but I know that, if not treated, it can get worse and may end up affecting muscles that you need to survive, such as the heart. And in the long run, it can affect your ability to swallow and breathe.

I'm sorry if I'm blunt about it, but I'm only thinking about your wellbeing. I wish you were living in Europe, so you could get treated for free. Please don't listen to any medical advice on this thread, Dermatomyositis is a very serious condition.

originally posted by: Aliensun
a reply to: NarcolepticBuddha

You should be wondering if your disease is not psychologically triggered.
Your "solution" seems to indicate that.

As psychological as heart disease, cancer and trauma caused by accidents. He is not imagining his symptoms, he has a serious condition.