Autoimmune disease

Good question do you have any ideas

Haha...good question. No, there is no treatment for autoimmune diseases, regardless of what diseases we are talking about. Sarcoidosis, lupus, rheumatoid arthritis, Hashimoto's disease...you name it..For all autoimmune diseases, the treatment is the same: steroids. These work by suppressing the immune system, so it won't attack the affected organs. On the other hand, a weak immune system lets patients susceptible to infections and diseases like cancer. For more than 7 years, I've been looking for a miracle treatment. I've tried everything, including herbal remedies and homeopathy; nothing really works. I mean, you can find a lot of things that alleviate the symptoms and even slow down sarcoidosis, but I haven't discovered a real cure so far. Eating foods and taking remedies that decrease inflammation within the body is one of the best things you can do keep sarcoidosis under control. While steroids are somehow helpful, I won't take them too long (no more than 1-2 years); in fact, the shorter the period, the better it is. In addition, ask your doctor if you can also take some immune system boosters while on steroids (some doctors may advise you to do so). Also, there are many other things you should and souldn't do, so you should start researching the issue seriously. You can also find many people who will give you bad advice; so, don't take things for granted. Do your own research on official sites (goverment sites, organizations' sites, medical magazines, specialty publications, clinical studies written by doctors or renowned naturopaths) and draw conlusions for yourself. You can literally screw up your life by simply following bad advice, so take care.   

I wish you all the best and let me know how your research goes... 

Good luck!

Magda

Hi Robert,

Excellent question and I wish I had an answe to share. I've battled sarcoidosis since 1998, I have one of the top doctors in the U.S. Who has published many articles, written a book, and leads numerous seminars for doctors to teach about sarcoidosis as well as offers webinars for stormy education. i shared that to let you know how long and hard I've looked for that answer, myself.

You should google sarcoidosis and read solid articles on both autoimmune and sarcoidosis, which I'm sure you have ready. Also, check out the sarcoidosis organization. One last tip that I've found helpful is support groups on Facebook. Thousands of people like us share experiences and questions. As you know, run things by your doctor before doing any recommendations on changes. Facebook support groups have been a tremendous help for me.

Best of luck,

Deb

Hi robert 18769

I'm glad you've broght this up too as it's been something I've wondered about based on my experience.

In my desk research I found that Sarcoidosis has actually been reclassified as an inflammatory disease - whereas before it was classed as an autoimmune one. 

I had thyroid issues prior to being diagnosed with Sarcoid - like literally within months. Two doctors and a consultant (not Sarcoidconsultant as I'm still waiting to see one) have told me that Sarcoid isn't an autoimmune so there's no connection - they said it was simply bad luck that the two happened at the same time. 

My thryoid was overactive (only very slightly it turned out) so was on tabs for a month before they realised it was making me underactive. Eventually told to just stop taking them and my thyroid went back to normal on it's own - within a week. They tried so many tests as they presumed I had Hashimoto or Graves, but found nothing indicating I had any of those at all. 

Then, after complaining of a chesty cough that had been around months, and various tests later, I was finally confirmed with Sarcoid. Personally I think that I had a flare up of Sarcoid which blew out my thyroid for a while.

Personally I believe it is autoimmune but not enough is being done to understand and treat it along these lines. I reckon the problem is that because it's been reclassified inflammatory, no one is treating it as autoimmune and connecting any dots. My experience was too much of a coincidence and I'm aware that autoimmune diseases can cause thyroid issues.

magdafloasiu is right though - take everything with a pinch of salt and don't read too much into things too much. Sometimes it's about listening to your own body and knowing what affects you and what does work and doesnt etc.. and looking at ways to help reduce the 'inflammation' part of the disease. 

Apparently there is no cure as they don't even know what causes Sarcoid - no one has told me anything I haven't already found out myself. Am looking forward to finally meetign a specialt after 4 months since diagnosis.

I've been using difflam spray the last two weeks and have noticed my lymph nodes in my neck and under my jaw have gone down a bit, but then, my Sarcoid episode could simply be calming down.

Who knows....

Anyone got any other thoughts/found anything out?

SufferIn

Some say Sarc is autoimmune, some say inflammatory - how about an inflammatory autoimmune? (lol) I've been blessed with a doctor who, after @ 5 minutes into my first appointment, told me he thought we were dealing with Sarc and has partnered with me for over 15 years now on my healing quest. I had no desire for cortico-steroids & my doctor agreed it w/b best to not use them unless direly needed. Last month's MRI revealed my lungs appear to have cleared. Maybe remission, maybe gone for good- time will tell. (That was not the only area Sarc invaded, but was the longest lasting.) Thing is, no one has yet determined what causes Sarc & as far as I'm concerned, no one really knows what it is. No two cases are alike & I can guarantee you there are people with Sarc being treated for the condition it is presenting as, rather than what it is, because their doctors are not familiar enough with Sarc to even consider it (that's if it even comes to mind). I went back in my mind to the time when odd things started occurring with my body & health to try to determine what my paticular trigger into "Sarc-land" had been. One major occurrence was my house had burned down to the ground. I determined it had to be petrochemical toxins I had breathed in and absorbed thru my skin from the unusually thick soot during the months I'd spent looking for any belongings that survived that fire. My husband was an artist - paint, laquers, stains. We each had our bikes, stair-steppers, treadmills & other workout equipment - lots of rubber, plastics, polycarbons..... well, actually, almost everything we owned was simply gone - turned into that soot. Flash forward @ 2 years and on a Sarc forum was a posting by a woman whose husband had worked the burn pits in Afghanistan. He, and many other GI's who'd worked the burn pits, came home with medical issues that turned out to be Sarc and while the government initially denied their Sarc was caused by breathing the toxic smoke, eventually, due to so many cases of Sarc with the only common denominator being the burn pits, the officials conceded. When I read what was burned in those pits, much of it was the same as what had burned in my house.

I consider that validation of my suspicion as to my Sarc trigger. Interestingly, though the trigger was the same, each person's Sarc still presented differently - I suppose where each individual's genetics made them susceptible.

The reason I am so long winded here is two-fold: maybe someone else can find validation from it and to show that since so much is unknown re Sarc, each of us must take responsibility for seeking out our own possible and/or probable causes and then, ultimately, successful treatments. Hopefully you'll have a doctor who will partner with you.

Personally, I consider my Sarc was "autoimmune" but take it a small step further - I considered my immune system was simply "confused". Being bombarded with so much toxicity from so many different toxins all at the same time overwhelmed it, causing it to "attack the wrong guy". Kind of a nervous breakdown! I researched nutrition in relation to body systems with the ultimate goals of eliminating toxicity plus attaining and/or maintaining the proper balance in each. While I haven't attained 100% balance, my MRI results give me the feeling I'm on the right track. I sure hope so! And I hope some of this info helps .