Do you often feel fatigued? Are you short of breath or suddenly feel a sharp pain with no sense? Do you notice that lately you are not being you and as if you are in a mild depression, but for no apparent reason? Maybe you wake up in the middle of the night sweating profusely and don’t sleep a wink for a while even though you feel exhausted? This article may interest you, keep reading…
I have passed through these situations described before, even deeper, and I know it’s difficult to discover what is going on. I have tried lots of treatments, but here I will talk only about what helped me feel better.
Besides, nowadays we are so immersed in our fast society that we don’t have the time to dig into the problem and find the actual cause of these symptoms. But believe me, if you feel the way I’ll talk about here, stop right now, make a list of your symptoms, and visit your doctor with no hesitation.
Here I share my own experiences as I was diagnosed with sarcoidosis in its first stage, but I’m not a doctor. Even if I back up my words with many official studies, all of my thoughts are just my own convictions and tests that I’ve done. It means you need to talk to a professional before changing your lifestyle and nutrition.
Sarcoidosis symptoms may be like other diseases and that’s the reason it is so hard to diagnose. But first things first…
Table of Contents
What is sarcoidosis?
Sarcoidosis is defined as a persistent, incurable disease despite the fact that many times it can manifest and then vanish without further ado. It was first described by English physician Sir Jonathan Hutchinson as a non-painful skin illness in 1877.
As the Foundation for Sarcoidosis Research explains: “It’s an inflammatory disease characterized by the formation of granulomas — tiny clumps of inflammatory cells — in one or more organs of the body”. They defined it as a “rare disease”. Although, nowadays it affects over 200,000 people in America and more than 2 million around the world according to a study made during a 15-year period.
You may think that granulomas and tumors in our body are similar, but the truth is more nuanced. Granulomas are small lumps of immune cells that form in different parts of the body. They can affect any organ in our body, but they mostly appear in the lungs (pulmonary sarcoidosis), hearth (hearth sarcoidosis), skin and lymph nodes.
We still don’t know what causes the sarcoidosis. The experts from the Mayo Clinic explain:
“Some people appear to have a genetic predisposition to develop the disease, which may be triggered by bacteria, viruses, dust or chemicals.
This triggers an overreaction of your immune system, and immune cells begin to collect in a pattern of inflammation called granulomas. As granulomas build up in an organ, the function of that organ can be affected.”
In 2011, a study accomplished by Adam S Morgenthau and Michael C Iannuzzi pointed that Mycobacterium tuberculosis (the causative agent of tuberculosis) catalase-peroxidase is the possible antigen catalyst of sarcoidosis. I’ll circle back to this discovery as I delve into the methods I employed to aid in my recovery.
What we know for sure is that sarcoidosis affects people of any age, gender and ethnicity. According to the Foundation for Sarcoidosis Research, it seems more common in African Americans and people of Scandinavian or Irish descent.
Although I have to say, I’m originally Bulgarian and doctors told my mom that they don’t treat “rare diseases”. As a result, Bulgaria is devoid of sarcoidosis patients, as if the disease was never there. I’m sure that is the same situation in most countries in Asia, Africa, Eastern Europe, South America, etc.
Symptoms of Sarcoidosis
Sarcoidosis symptoms are very different and depend on the affected organ, the phase or severity of the disease, and even depending on every human being. That is why it is so difficult for medical professionals to get to the precise diagnosis in a minimal amount of time. Many people don’t even experience any symptoms until the disease is already advanced.
Others feel these general symptoms:
- feeling fatigued all day long
- have a fever for no reason
- night sweats
- Sometimes chronic pain, mostly in their neck and upper back. As if a nerve that runs through your spine from top to bottom collapsed and you may even feel a back pool.
- depression or change in your mood as if something bad is happening when apparently nothing significantly changed.
- sudden chills
- weight loss in early stages, which most times is confused with hyperthyroidism or cancer disease
Lung symptoms:
- shortness of breath (mostly in pulmonary advanced stage sarcoidosis)
- chest pain
- persistent dry cough as if you can’t even catch some air
- gasp frequently, trying to remove something inside your throat
Skin symptoms:
- sudden allergic reactions or allergies which appear for a long time
- skin rashes, bumps or sores
- A collection of red or reddish-purple bumps, typically found on the shins or ankles, when pressed, disappear. They are sometimes painful.
Eye symptoms:
- eyes can get redness, pain or blurred vision
- sometimes burning or itching eyes, which is frequently confused with seasonal allergies
- light sensitivity
Hearth symptoms:
- it causes palpitations or arrhythmias
- chest pain
- fatigue
At this point, it is not the time to become obsessed and think that you suffer sarcoidosis for sure. The fact that you have gone through any of these situations does not equate to being ill. Many of these symptoms can be because of other temporal reactions of your body or other types of autoimmune diseases, such as diabetes, fibromyalgia, or even gout.
Now is the time to know what the process is to diagnose sarcoidosis.
How should I know it’s sarcoidosis and not something else?
As I already mentioned, the disease disguises itself by manifesting symptoms of other diseases. The way to detect it is to rule out other diseases. Doctors typically use a combination of methods:
- Blood tests analyzing ECA (that’s ACE in the blood results below)
- Chest X-ray or computerized tomography (CT) scan of the chest
- Electrocardiogram (ECG or EKG) to detect heart problems
- Eye exam to check for vision problems that sarcoidosis may cause
- Positron emission tomography (PET) scan or magnetic resonance imaging (MRI) if sarcoidosis affects your heart or central nervous system
- Biopsy, in case your PET scan shows too much inflammation. That’s essential to discard any kind of lymphoma (cancer in the lymphatic system).
It took me approximately 3 months to go through all of these procedures. It was exhausting and, in my case, I started getting better right after my PET scan. Doctors were confused because the scan showed an incredible internal inflammation of all organs. They thought I had a lymphoma in its last stage.
So they did the biopsy, which involved a procedure called mediastinoscopy. This is a medical procedure used to examine the space between the lungs that contains important organs such as the heart, thymus, and lymph nodes.
During a mediastinoscopy, they made a small incision in my neck and inserted a thin tube with a light and a camera on the end, called a mediastinoscope, to visualize the organs and tissues in the mediastinum.
That allowed doctors to get 19 small samples for examination and determine the extent of the disease. I remember the call of my surgeon (he never calls patients, their assistants do that instead) at the end of March 2019, to tell me it’s not lymphoma. I guess my reaction was not as happy as he himself had been, because he repeated it to me saying: “I don’t think you understood me… it’s not cancer.”
I’ve already read a lot on what sarcoidosis is, so I was happy to survive, but not to fight with an invisible enemy even for doctors. I guess that, as I had previous experience with my husband’s cancer, I felt I cannot afford to start researching and testing things with a little 1-year-old baby by my side, working, and so on. Now I see that’s a far better option after all.
Treatment for Sarcoidosis
There is currently no cure for sarcoidosis, but treatment options are available to manage symptoms and prevent complications. Most times, sarcoidosis may resolve on its own without treatment, according to the Mayo Clinic explanation on treatments. Even though some people may require medication to reduce inflammation and suppress the immune response.
Medications to treat sarcoidosis
Corticosteroids, such as prednisone, are commonly used to treat sarcoidosis. I tried them for three weeks on my skin and I took a pill treatment of prednisone too. These medications can help reduce inflammation and improve symptoms, but they also have side effects, such as:
- weight gain
- Mood changes (I felt like Dr. Jekyll and Mr. Hyde all day long and most times I couldn’t stand myself. I don’t know what my family was going through with me.)
- increased risk of infections.
Other medications, such as methotrexate, azathioprine, and hydroxychloroquine, may also treat sarcoidosis. I tried methotrexate treatment as well. Not for me at all! I was constipated for seven days, even stopped eating. As the urgency doctor says softly: “You are full of poo.“ Yes, that specialist was a great human being (sarcasm).
There is a famous treatment associated with rheumatoid arthritis, which is also used to reduce sarcoidosis inflammation, called tumor necrosis factor-alpha (TNF-alpha) inhibitors.
Besides medication, people with sarcoidosis may benefit from lifestyle changes, such as quitting smoking and alcohol, eating a healthy diet, and getting regular exercise. It is also essential to manage stress and get enough sleep to help reduce inflammation and improve overall health.
I will explain what my journey was to improve my health and feel much better in this next section.
What I did to help my own recovery
As I mentioned before, there are different treatments. None worked for me. In fact, they made me feel much worse. My doctor decided to lower the doses and finally eliminate all the medicines. From what I saw, my body improved right after taking off the first treatment.
We decided to do blood tests every 6 months to monitor inflammation parameters. Tests from September 2019 and February 2020 showed that the inflammation was stable and had come down to a reasonable level not to be treated with drugs.
In March 2020 the pandemic began, so it was very difficult to continue analyzing myself, especially since all the doctors were busy with Covid patients and hospitals were a chaos.
It was strange to me that precisely the Covid in its beginnings behaves in part like a pulmonary sarcoidosis that progresses incredibly quickly. What’s more, the Covid in the United States, at least in its beginnings, greatly affected the black and Caucasian races, the same statistics as sarcoidosis.
It is as if Covid was a virus with the capabilities of sarcoidosis, but the mortality of late-stage lung cancer and the rapidity of diffusion with which viruses in general are characterized.
Research on Sarcoidosis
As I already mentioned at the beginning of this essay-guide, there was a study that showed that the culprit in the development of sarcoidosis is Mycobacterium tuberculosis catalase-peroxidase, the causative agent of tuberculosis.
As soon as I found out about my diagnosis, I started looking for something to fall back on that could help me heal. I found another study, the source of which I can’t currently find, that explained that they did tests on young people (up to 25 years old) injecting them with the tuberculosis vaccine to improve or cure their type 1 diabetes. The idea was to reset their immune systems and make them “stop failing” by killing the very cells that make insulin.
Maggie Fox talks about a similar study on NBCNews if you want to take a look at the details. And this is another study using the vaccine in terms of performance against diabetes mellitus 2.
And it is that studies have been carried out for a long time regarding the operation of the tuberculosis vaccine, as Roni Carin Robyn commented in The New York Times last year. And the coincidence is that since last year there has been research into using the BCG vaccine (Bacillus-Calmette-Guerin vaccine) against Covid and in general to strengthen the immune system.
In fact, in the Scientific American article (January 2023), Viviane Callier explains they are doing tests to prove the prevention of serious diseases such as cancer or Alzheimer’s.
To see a little more in detail how Mycobacterium tuberculosis works when it enters our body and how it “wakes up” the immune system, I recommend this paper (by Pallavi Chandra, Steven J. Grigsby & Jennifer A. Philips) which includes very clear images of the process.
Returning to my steps, I decided to ask my doctor to vaccinate me with a tuberculosis vaccine, crazy I know. She almost kicked me out of the office. So I investigated on my own how to achieve a “reset” of the immune system.
Testing on my body
After two years of reading different books and studies, I concluded I could do it through a therapeutic ketogenic diet. Back then (early 2021), my husband was dealing with his second cancer, a prostatic cancer stage 1 he still deals with. I was extensively researching the newest cancer studies.
This is how I came to the book by researcher and nutritionist Miriam Kalamian “Keto for Cancer” that I gobbled up in a week of reading at night (after putting my son to bed). And in July 2021, I contacted Miriam to start a ketogenic diet for my husband. Miriam is fantastic and we owe her so much. Miriam, if this reaches your eyes, we are thankful for all that you have done for us and the world at large!
At first I didn’t think of doing the diet myself, but within a week I had a relapse of my sarcoidosis symptoms. Prednisone had been a nightmare for me, so I was reticent to consider using pills again to treat the disease. Additionally, during the same summer, three separate doctors sought to test me for colorectal cancer, breast cancer, and hepatic cancer. I declined, particularly as they had not even attempted to conduct a blood test on me.
The only solution I could see was to join my husband and go on “the diet” as well. I have to say that I speak of “diet”, although it really is a lifestyle, not just what we eat.
The ketogenic therapeutic diet involves nutrition, stress control, intermittent fasting, exercises, and enough sleep. I delve into all of this below when I suggest a quick checklist with all the things you can do to feel better.
All the menus I made daily with the Cronometer app were reviewed by Miriam Kalamian and her team, and they followed up fantastically with weekly notes on what to improve.
We were strictly adhering to meal plans for 6 months. By the end of the year 2021, my husband had already undergone surgery for his third cancer and had his first chemo session, which was devastating. We had to stop our way of eating for at least a few months until he finished the chemo and radiotherapy.
In my case, in these 6 months I felt better than ever. They were difficult from the point of view of dealing with my husband’s illness and weighing everything we ate and preparing the plans, doing the shopping, etc. But perhaps it was the diet that kept me in good health and mood all along.
I firmly believe that after those 6 months, something changed in my immune system. Before, when my son caught a virus, I immediately caught it for weeks. After the diet, I hardly even caught a cold.
Following those 6 months, we still consume everything. I no longer measure portions, but I know how to use food to my advantage. My health has improved so much that I have no symptoms of my sarcoidosis and feel better than in previous years.
I lead my normal life that includes good eating habits, good food, better stress management and enjoying the day-to-day.
Support for Sarcoidosis
One important thing to keep in mind is seeking support. As soon as I was diagnosed with the disease and started researching, I found the support group in Inspire.
There are several organizations dedicated to raising awareness and providing support for people with sarcoidosis. The Foundation for Sarcoidosis Research (FSR) is a nonprofit organization that funds research, provides education and support to patients and healthcare professionals. They have a vast community to support patients. They organize an annual Gala Crystal Awards and reward individuals who had contributed to the sarcoidosis research in the past year.
I believe we as human beings are social creatures. We need support and even more when we suffer. There is hope when you read or hear stories from other people who survive the disease. There is empathy inside an inner circle of like-minded people who experience the same illness.
I recommend everyone to be part of a community like that. It helps you feel you are not alone in this.
Quick checklist of what I did to feel better
Here I suggest a quick checklist of all the things I did to feel better with no symptoms. I will not go too deep otherwise I’d have to write a book, but I’ll give at least some ideas.
Keto diet
Both my husband and I started a keto diet in summer 2021, which we could accomplish for over 6 months. I insist on the need to do that with a professional such as Miriam Kalamian by your side. It’s essential to be supervised by a specialist who knows every detail of this diet, not just a nutritionist who knows all kinds of diets.
Don’t get me wrong! I believe good intentions are great, but in this case, experience is more important. And by the way, I just found out that Miriam is co-writing a Metabolic Health Handbook with Chiara Visconti, which will be out soon. It would be great to have more support regarding metabolism-related diseases.
As I mentioned before, a keto diet is a living habit, not just a diet. I know there are so many bad-intentioned articles on the wrong direction of keto diet. There’s a terrible reputation for keto diets over the Internet. And if you follow them just by doing general things they say on the Internet, you may soon get sicker.
As a matter of fact, I did a blood analysis in summer 2021 to see my improvements and I told the doctor I was on a keto diet. She didn’t know me at all. We just exchanged an email as a part of the protocol of the private medical center. Her reaction was a huge email warning me about “dangerous consequences”. She included 2 sensationalist articles against that diet, which I should say were weak to convince me I was doing something wrong. By the way, the blood analysis was perfect!
Intermittent fasting
Part of the keto diet is that you should include some intermittent fasting to increase autophagy, as P.D. Mangan explains in his article. I highly recommend you to read it if you want to deep dive into this eating pattern.
And here is a list of the best articles on intermittent fasting by Dr. Mehmet Yildiz, which will introduce you to the details and is supported by proven medical studies as well.
Food diary
In December 2018, before they knew what was wrong with me, I was in the hospital and trying to get rid of illnesses. I started reading a book on nutrition and got the idea of keeping a food diary when I get out of the hospital. That way, I would find out what suited me and what didn’t.
I did and realized that gluten doesn’t feel good to me, although I didn’t eliminate it completely, just reduced it to a little bread every 2–3 days.
I was already lactose intolerant, so this is something I already avoided. Of course, I included meat in small amounts (until then I did not eat any meat, only fish and eggs) and more vegetables.
Meditation
I read several books on mindfulness and tried very hard, but I couldn’t concentrate. So I finally came up with a way to meditate that worked for me.
What I do is close my eyes and imagine myself in a place where I feel very good and at peace, where there is no rush, I have nothing important to solve and I just enjoy the sun and the sounds of the birds (I listen to bird sounds and rain in the forest from YouTube).
I focus on a calm world of mine and tell myself that I am healthy and everything in my world is working fine.
I started practicing positive affirmations when I was a 12-year-old girl and my mother bought a book by Louise Hay. My mom didn’t like it, but it hooked me.
I guess that as children, we are much easier to convince that we can change our reality just by thinking about it. As we age, we often forget how to do this, though it is possible to relearn.
Stress management and fear
The books that have helped me the most with stress management are those by Wayne Dyer and Neville Goddard. All their books are remarkable.
Apart from anxiety, I was petrified of death, not my own, but of someone close to me. I often burst into tears just knowing that someone has died without even knowing them.
I would often remain awake during the night meditating on mortality and what the results would be if someone near and dear to me passed away. It is evident that my fear was not baseless given my husband’s health issues.
One book that helped me the most was Thich Nhat Hanh’s book “Fear: Essential Wisdom for Getting Through the Storm”. I would strongly suggest that you give it a try.
Fatigue
As for fatigue, to improve in this sense, the first thing is to convince yourself that you are not guilty when you suddenly come down. This goes hand-in-hand with stress management and meditation, but I’m putting it aside because I also needed acceptance.
Accept myself and not blame or get angry with myself because I got up at 8 in the morning and at 9 I had to lie down on the sofa for half an hour for the world to stop moving.
And not to blame myself for not being able to push my body at this moment to dedicate myself to my child who, like any other child, was overflowing with energy.
I discovered that what works for me is to release that tension by writing, especially poetry that comes from within. I sometimes feel a longing to paint like I used to when I was a child, or to tinkle the ivories with the music of the British Downton Abbey series, or to take a leisurely swim in the swimming corridor for slow swimmers.
I have found that it feels great to return to activities that I have always loved in my childhood and adolescence. Activities that, due to lack of time, I had left completely. It was like going back to my roots of what made me happy.
As I like to support my ideas with studies, there was one that confirmed that people who wrote something positive every day improved their health. And here I link to what I commented that is my particular meditation…
What I do is write a diary of myself in a parallel dimension in which I am immensely happy and healthy. Yes, it may not be the immediate truth, but as a Bulgarian saying goes:
“If you tell a lie a thousand times, it will become the truth.”
Physical body
To stay in shape, I started with very gentle yin yoga exercises. The duration of the class was 1,5h. I did half an hour, which was also the warm-up part, and then I would lie down in Shavasana to meditate and listen to the teacher and the other students.
I had pain that started from the base of my skull and went all the way down my spine to the middle of my back. Sometimes with any movement, I would notice how my nerve tensed and cracked, the pull paralyzed me.
Once it happened to me in bed with the little one of a year and a half and without my husband around. Me, unable to get up or move from the pain, and the child was about to wake up in a room next to mine. That was a challenging situation!
So I found another book on the vagus nerve (“Accessing the Healing Power of the Vagus Nerve: Self-Help Exercises for Anxiety, Depression, Trauma, and Autism” by Stanley Rosenberg) that explains simple exercises to relax this part of the neck and back.
Supplements
From this last book, I also learned about the importance of magnesium so as not to fall into neck or back pulls. I read a lot about the role of minerals in the human body.
And also, after doing the keto diet, I learned the amounts that the main foods contain of the most important minerals, such as magnesium, sodium, potassium and calcium.
During the keto diet, we drank the LMNT salts which have different flavors. The fact is that in the summer of 2021, they changed the law on supplements at Spanish customs and we could no longer buy them as before.
For that reason, I started a homemade preparation by adding the approximate amounts of the LMNT sachets and a little fresh lemon and erythritol. The LMNT team also sent us their formula to make it at home just because we cannot purchase their products overseas. There are wonderful people working in that company! I am deeply grateful for all your support!
Therefore, as soon as I notice I get up a lot at night to go to the bathroom, I take salts during the day so as not to have problems with my vagus nerve.
Therapist psychologist
I had already gone to a psychologist who was also a psychiatrist to deal with issues from my childhood. The fact is that this professional made me feel I was not doing things well. I always came out of there worse than I went in. I needed two hours of wandering around the city center to clear my head and get back on track.
So by chance, a friend recommended me a psychologist-humanist. I did not know that there were different currents within psychology until that moment. He was an invaluable ally. Things started to make sense and I no longer felt angry with myself and, above all, I didn’t feel a “bad person”.
Until today we persist in beholding this helper (as he likes to be referred to), now side-by-side with my husband, and it is a day that I start with great excitement, knowing that we will chat again.
Make an action protocol
If I have learned anything from the illnesses that plague us, it is that what helps me the most is having an action protocol. It’s like the protocol we follow when there’s a flood in the city or some kind of major emergency. It’s the same, applied to my symptoms.
It is essential to be aware of what to do. Being focused on what to do so as not to fall into the limbo of negativity, anger, and self-destruction.
I’ve already said that when my neck feels a little stuffy, I start with my mix of minerals, exercises for the vagus nerve, and yoga.
If I receive bad news, I try to stop and write my thoughts as brainstorming without analyzing or stopping, like a brain emptiness.
Then, I analyze how it affects my body: if my arm hurts, my back hurts, my palm itches (just kidding, I’m not so maniac), etc. I write it all down too.
I leave the house or if I can’t, I read a novel (they always help me), which I have in line until some time passes. The TV doesn’t work for me, but maybe for others it could be a way of relaxation. I can stay on the path to destitution while watching “Finding Nemo”.
Following the phase of lamentation, or upon the conclusion of my expression of frustration, I can then analyze what I wrote.
I try to turn each negative phrase around. It doesn’t matter if it’s not true. I’m looking for the positive twin. For example, the phrase “Why only bad things happen to me?” I turn it into “How many good things happen to me!” and to the “There is no way out. I don’t know what to do.” -> “Doors are open so that everything will solve, without me having to do anything.”
Final thoughts
Crafting this article-essay has been very challenging. It took me three years to work up the courage to do so, mainly because I know many people would take a position against some statements I make.
For that reason, I insist that this article, although based on many studies and research, is still my OWN experience and opinion on how to feel better if you are diagnosed with a rare disease such as sarcoidosis.
And also, I would like to point out that none of the links in this guide-essay are sponsored, nor do I get any kind of benefit from commenting on them. They are really things that have been drawing my attention (with studies), or that I have tried myself and they have worked for me.
Ultimately, if this essay helps even one person feel better, it has served its purpose. My goal is to help you question your own health and take control, ask yourself why it is like that and encourage you to find solutions that can help you.
Please, if you are one of those lucky people who has tried something I am talking about and it has worked positively for you, I would love to read you in the comments.
Thanks for reading until the end and encouragement in the quest of restoring your health!
Related articles
Creatine for All: Exploring its Benefits for Non-Athletes and Fitness Enthusiasts