Sarcoidosis - Natural Healing?

My husband was diagnosed with pulmonary sarc in 2000. We first tried not doing anything and then things got so bad that he was started on prednisone. He was doing much better until they tried taking him lower than 10mg a day. He stopped the meds and one month later was back to square one. At the time, the hospital was having a study on pulmonary sarc and put him on various antibiotics for a 9 month trial. He could only make it to 6 months because the side effects were so intense. But after one month on the antibiotics and cortisone - he received his first clear CT and they tapered him off of the prednisone. The antibiotics put him into remission and we then attempted to resume a normal life all the while getting a CT scan once a year. All was fine until last year again. This time though he was diagnosed with peripheral nerve sarcoidosis and seems to be the only one here with this condition. Which leaves us in a predicament. He was started on 75mg of prednisone and we are slowly trying to taper him off. Currently he is at 15mg a day. The doctors have consulted with their colleagues in Europe and have said that should the symptoms return after he stops the prednisone he will have to start Infliximab therapy. My husband is a doctor himself and deals with ophthalmic sarc patients on a regular basis - some of whom are on Infliximab - and he says that he wants to attempt a natural healing before starting Infliximab (his colleagues keep pushing for Infliximab therapy). On a natural healing note - so far, we have noticed that when he cuts out all stimulants such as caffeine (except for green tea which he has noticed acts anti-inflammatory), alcohol, artificial sugar and most sugar he feels his best. We are attempting to follow a diet which includes loads of fruits and veggies and very lean protein. I don't cook anymore with any spices using preservatives or MSG. So far he is only doing marginally better. I wanted to know if there is anyone who has done anything nutritionally that they can report has been beneficial in reducing their symptoms. Are there any supplements? He is currently taking Centrum and Vitamin B for the nerves. He also strongly believes in the healing power of the mind and positive thinking. Does anybody have any experience with meditation or natural healing? Thank you.

Report post

11 replies. Join the discussion

Hi Sandra,

I am so sorry to hear of your husband's illness. I myself, am 26 and have cardiac sarc and an implanted defibrillator because of it...Anyway, I can not attest to the actual 'healing' of disease or the long term effects of these things...but, I have been visiting a Naturopath and feel that he has put me on a great path. This, again, is not to say that it is a replacement for 'western medicine', but I do believe it can only help. I am on pred and methotrexate, and am hoping to get of at least the pred soon...

As far as diet goes, he has put me on a 'paleo diet', basically eating what the cavemen ate 40,000 years ago. I think you have done the right things so far, cutting out caffiene, sugars etc...but the big thing with the paleo lifestyle is to cut out ALL grains, beans and potatoes as well. Lots of fruit and veggies and yes, lean and rare (i am still not fond of rare meat) protein. Basically you think, if it can not be eaten in it's raw, natural form like our ancestors did in the wild, then don't eat it. There is quite a lot of interesting reading regarding this diet and I really thinkg there is something to it...there are lots of toxins in these carbs and when you look at the history of humankind it does seem to make sense that our bodies are not equipped to eat these things. There are some interesting connections made between these things and autoimmune diseases. Also, Omega-3 oils are supposed to be very good anti-inflammatories. I was also diagnosed with Celiac a couple years back, so I had already cut out gluten, but it is very difficult to cut out all of these things and I am still, definitely, not perfect about this, but I am working toward it. I have only been trying this for about a month, but already feel a bit better and have lost about 7 of the 20 pounds I packed on with the pred.

I also believe in positive thinking etc...if I hadn't come around out of my depression that i entered when first diagnosed, I don't even like to think about the state I would be in right now...My naturopath also has been teaching me about self-reflection etc...and tells me to think about the four major aspects of life-1.What we eat and put into our bodies. 2. How we exercise and rest. 3. How we think and use our minds. 4. How we relate and interact. These simple things have actually helped me a lot even though I still have not really had time to do all the meditating etc (I watch me three year old son full time!)

Anyway, I could honestly go on and on and on....but, I think your husband is on the right track...not that this means any of this will miraculously cure him, but will certainly at least add to the quality of life.

Report post

Hi Dana,

Thank you so much for answering. I am definitely going to share this information on the Paleo diet with my husband. We both truly believe that what we put into our bodies and our way of thinking affects our health in so many ways.

He has been working hard on the positive thinking aspect. When he first was diagnosed it took him a year before he realized that an attitude change would make a difference. He started the positive thinking and four months later was in remission. That thankfully lasted for five years and then the stress of the job probably got to him as well.

I think that you have to factor in stress as a major catalyst for diseases like this. Learning how to destress is an art and we pray to learn that art someday. I will certainly pass on the information about the four aspects of life and how to improve and work on them.

Thank you so much for taking the time to share your thoughts. I am so sorry to hear that you have been diagnosed with cardiac sarc but find it wonderful that you are working with western medicine and alternative medicine. I am a strong believer in channeling both for optimum health.

Report post

Sandra,

I think you and your husband are on the right path by looking at alternative and complementary ways to treat this disease. I have been on an anti-inflammatory diet for about 6 months, and I swear by it. You are already doing most of the right things, it appears, but I would cut out all red meat (all animal protein, if possible, including dairy and eggs).

I had never heard of the paleo diet that Dana advocates -- it looks really interesting as well. However, fruit can also cause inflammation in many people because of the sugar content, so I would recommend eating only fruits that are low in sugar or at least not acid producing. Lemons, limes and grapefruit are okay, apples are good, but stay away from tropical fruits and high sugar fruits. An abundance of fresh and raw vegetables is excellent -- try to eat as much of the veggies raw as you can. Also, some grains are okay -- try quinoa and millet. As Dana said, stay away from the potatoes. I personally do not have a problem with beans, but that may be a personal issue and one you husband will have to experiment with.

I hope your husband sees some relief from this. It may take a little while -- perhaps a few weeks - before he notices a change. But he may see an increase in energy and stamina very quickly. Tell him to drink lots of water!

Good luck!

Cindy

Report post

Sandra,

One thing I didn't mention -- you said your husband strongly believes in the healing power of the mind. My husband is a hypnotherapist and has had much success with patients suffering from chronic diseases that are exacerbated by stress. He has treated people with fibromyalgia with much success, and he has several cancer patients who use guided imagery to control pain and stress-related symptoms. Biofeedback has also been proven in several studies to aid in controlling stress. Have him look into any or all of these complementary healing practices.

A couple of years ago I had a severe episode of pulmonary sarc and almost landed in the hospital. My husband did a Huna healing on me -- this involves the chakras, kind of an energy healing -- and I don't know how it worked, but it's the best I had felt in 3 years! It seems that a strong belief in a particular type of healing art or technique is very important in the healing process. Any practice that is outside of a person's belief system doesn't seem to work for them -- which demonstrates the power of the mind in healing.

Hope this helps.

Cindy

Cindy

Report post

Cindy,
Thank you for your comments. Is there a book you suggest on reading for an anti-inflamatory diet. I have not been successful in locating.
Thanks,
Jan

Report post

Hi Cindy,

Thank you so much for posting your comments. I had not realized that there is such a diet as an anti-inflammatory diet. Great news. Sort of surprised me about the fruit aspect - but it goes to show of how much I need to learn.

It is so nice to learn that there are multitudes of alternative aspects of healing that we can look into. Now the challenge will be to see how to get these bits of information across without pushing too much.

I am going to go home this weekend and stock the fridge with all sorts of fresh veggies and lean protein that is not full of nitrates, fat or even red meat. '

Thank you again for your guidance. I will be reading up a lot over the next couple of days - also about the paleo diet.

Sandra

Report post

Hi Jan:

Somewhere on this website I found reference to a book called "The Inflammation Free Diet Plan" by Monica Reinagel. I just picked it up last night so I can't fully recommend it but so far it seems to make alot of sense with what I have read so far. I've already jumped to the section that outlines approx 1000 foods/spices and their IF score (inflammation factor). It at least gives me an overview of what to stay away from. As others above have mentioned, the theme is consistent - sugars are bad, veggies are good etc. What does surprise me in this book is that caffeine is inflammatory neutral. It includes recipes as well that hopefully will be worthwhile. I will let you know when I try some of them.

I don't know if it's coincidence or not, but I went on a short trip with my kids Monday - Wednesday and of course ate burgers, pizza etc. Wed night at home I was up all night. The pain in my shoulders was unmanageable. Thursday I decided to stop eating anything that wasn't completely natural (I was hungry all day needless to say - but too afraid to eat). I woke up Friday morning and there was a noticeable difference in the inflammation/pain in my chest. It's still there, but not as heavy. My breathing is better as a result. My chest has been bad now for 3 weeks...so maybe there is something to what we eat and its effects on our bodies.

I will investigate the Paleo diet as well.

Here's to better days!

BJ

Report post

HI
I am dealing with inflamation in bronchials that causes excessive Phlegm
Do you think your diet might help with this type of inflamation

Report post

Hi Shooter. I have no idea. My skeptic nature with this disease tells me that this isn't the magic bullet that we would all love to have. However at this point I'm willing to try it. I'll post if I find any success with it (it will take awhile to both get on board completely and to form a semi educated opinion on the topic.

Have a nice day!
BJ

Report post

For the last few weeks I've been eating 'clean', avoiding foods with preservatives and any sorts of additives, no faux sugars, and I've seen an amazing difference in symptom relief, particularly with the fatigue. Last week I got the first of three to five SUPARTZ shots for the knees that are bad and that seem to set up some major fatigue. But I firmly believe that the better we take care of ourselves, the better we can live with sarc. I do try meditation, although with my job being very stressful the last few weeks I've not had much energy to do anything but rest. That is one thing i need to learn to do regardless of what is going on, i do think that it helps.

Anti-inflamation diets are good for us, Sarc or not, so much is connected to all of this. I think that when we really look at what processed foods do to our bodies, it is not a good thing. Just my cut and what is working for me. Hope this helps.

best, Iona

Report post

On your comment of eating clean - my husband came home from work yesterday famished. I had not prepared anything healthy for him so he reached into the freezer and pulled out 3 processed burritos. Poor man really paid for it today. His symptoms were back in full force and he felt "as if [he] had poisoned" himself. I decided to throw the rest of the burritos away to take away the temptation. No preservatives whatsoever in the house. I make all my sauces, dressings and pestos now as well. I have loaded up once again on fresh veggies and some fruits and hopefully tomorrow he will be feeling better.

Caffeine seems to affect his neuro sarc in very weird ways. He can handle any kind of tea - it is anti inflammatory. He does particulary well with green tea - steeped shortly. But should he touch coffee or any of the soda pops he notes that the symptoms almost start up immediately again.

Another no no is alcohol of any kind.

Living with sarc is proving to be a challenge - but we will push forward and forego dinners out and all sorts of other social activities until he gets better. It is just a shame that the doctors here don't advise on nutritional aspects of the disease. Thankfully he is a doctor himself and is basically working on trial and error with his treatment.

We live in a country where the ban on smoking has not taken any effect as of yet and that is another factor that aggrevates his symptoms. It seems that we will become very vigilant in only putting natural things in our bodies. (Sure does help with my dermatitis as well - so good for the whole family.)

Thanks for now. Sandra

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders