I am a sarcoid survivor. If you have never heard of sarcoidosis, it’s not surprising. It is one of those auto-immune diseases that is rarely talked about and not much is know about it or the cause.

Since it can affect so many different areas of the body, symptoms can be different for every person. According to the Mayo Clinic, general symptoms for most include fatigue, fever, swollen lymph nodes and weight loss. For me, the sarcoidosis resides in my lungs. I first noticed it in 2009 when my husband and I were just starting the P90x video program trying to get in better shape. While he exceled, I kept having to stop and catch my breath. Over time, this progressed. I honestly didn’t think much about it, I just thought I was severely out of shape, so I kept going. Then I was tired. I decided to go get checked out by my general practitioner who did some bloodwork and of course prescribed antibiotics. I went to another doctor who did more integrative medicine. She started me on Vitamin C IV therapy and breathing treatments. She then gave me an injection of Vitamin D. She did all of this without having a diagnosis. After my bloodwork revealed that my calcium levels were elevated she sent me for an MRI stating an initial diagnosis of Lung Cancer. Once the images were done, they were reviewed and the radiologist told me that it was either cancer or sarcoidosis. If it was sarcoidosis, there is no cure and that Vitamin D injection could make it worse.

Sarcoidosis actually causes granulomas to form in whatever organ is affected. My lungs were getting loaded with granulomas which made it difficult to breathe. Vitamin D actually increase the rate of granuloma formation. I started looking for more information online. I noticed that another symptom was red bumps on the skin. I saw that I also had these so I returned to my general practitioner and asked for a punch biopsy of those bumps. It turns out that I in fact did have sarcoidosis. Finally, a definite diagnosis. The problem was that the general form of treatment for this was prednisone. As someone who also has Type 1 diabetes, prednisone is not really an option for me. It sends my blood sugar sky high and makes life unbearable. So I had to look for better options for myself. With my husband being an incredible chiropractor and believer in natural medicine, I was lucky to have his support and help in the search.

He actually found something before I did. A company that he already had an account with, carried products for lung health and listed sarcoidosis as one of the conditions it treated. The company is Wei Laboratories, based in California. The products were called Soup A, Soup B and LC Balancer. The Soups worked on getting rid of the granulomas and restoring natural tissue, while the LC Balancer helped strengthen the kidneys so that they could rid the body of the toxins more easily. They are not cheap by any means, but after using them for 2 weeks I started noticing improvement. I used them religiously for about 6–8 months. I was feeling really good and could walk a few miles a day, whereas before, I was having to stop after 20 feet. I was happy and feeling good, so I decided to stop treatment.

I was doing well for awhile, then I went to Las Vegas with my husband for a chiropractic conference. To get to the conference or even to the gym in the hotel, you had to go through the casino, which is filled with cigarette smoke. I tried holding my breath but it was a good distance. After 4 days of this, I started having a really hard time breathing. It got progressively worse once we got home. The cigarette smoke really took its toll on me. I was getting even worse than I was in the beginning. Later that year, we had to go on another trip to Seattle for yet another chiropractic conference. I had to get assistance in the airports to get from gate to gate because walking was just too much. At the hotel, I had a really hard time. Luckily, the conference had a vendor area for the doctors and a Naturopath who practiced in Seattle happened to be set up. My husband met her and spoke with her at length about my condition. I met her and we all talked. She sent me home with a few products including some anti-inflammatory cream (homeopathic) and a detox kit. I used the cream that night before going out to explore the city. It actually helped a little. The real change came when we got home. I started using the detox that Monday and by the next day, I felt tremendous improvement. It was detoxing my liver, my kidneys and my lymphatic system. I was so happy. I have been working with this Naturopath for a few years now, doing phone and FaceTime consultations along with bloodwork and testing. She has helped me tremendously. At one point through all of this, my Pulmonologist told me that I needed to be on Oxygen 24/7 and I should get on the lung transplant list. I walked out of his office that day and never went back. A few days after that, we flew to Costa Rica for vacation and we hiked half a mile up a mountain to see a volcano. I had to stop on occasion to catch my breath, but I did it. I could never had made it if I had to tote around an oxygen tank.

Now I am doing great, working on my garden, running my nonprofit organization where I teach diabetes management, planning big events and more. I still have some bad days, but I push through it because I know that I have the tools, the information and the support to get past it.

You can get better, no matter what the issue, just keep searching for answers and never just follow blindly. Question everything and you will gain so much.

(Originally posted on May 9, 2017)

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