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"LDN Has Given Me My Life Back": Cindy's Recovery from Sjogren's & Burning Mouth Syndromes

Cindy Camp Koshack
June 24, 2018

About Sjögren's Syndrome:

Sjögren's syndrome is an autoimmune disease in which the moisture-producing glands of the body are affected, resulting in dryness of the mouth and eyes. In addition, Sjögren’s can cause fatigue, joint pain, and organ dysfunction in the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and central nervous system. It also can come together with other autoimmune connective tissue disease such as rheumatoid arthritis, lupus, or scleroderma, and is associated with a higher risk of developing lymphoma. Currently, there is no cure for Sjögren’s. Treatments aim to improve various symptoms and prevent complications.

About Burning Mouth Syndrome:

Burning Mouth Syndrome is a chronic condition that, without an obvious cause, causes a burning or scalded sensation that may affect the tongue, lips, gums, palate, throat or whole mouth. The burning sensation can be severe and cause extreme discomfort. BMS may also cause a feeling of dry mouth with increased thirst, and changes in, or loss of, the sense of taste. Its cause is unknown and treatments attempt to alleviate symptoms.

Cindy, how did your symptoms begin?

I can’t remember a time I didn’t have a water bottle in hand (due to mouth dryness) or a chronic cough. My 35 year old daughter recently told me that, as a little girl, she would listen for my cough in order to find me in the grocery store. Although I probably had Sjögren’s for 20+ years, a formal diagnosis only came in 2015. I was put on Plaquenil® but I still really felt horrible. I suffered from severely dry eyes, brain fog, debilitating fatigue, chronic pain, migraines, Chronic Kidney Disease (CKD), Interstitial Cystitis, gastrointestinal and lung issues, difficulty swallowing, and an extremely dry mouth. In addition, I had a lot of unusual mouth symptoms.

After much research, I found out my horrific mouth pain was a condition called Burning Mouth Syndrome
What were the unusual mouth symptoms you experienced?

Back in 2013, after a bout with shingles, my mouth began reacting to everything I would eat. I had skin hanging from the roof of my mouth, a very swollen tongue, dry mouth, and trouble swallowing. My mouth became severely dry and my tongue felt like it had been scalded with boiling water. It was so debilitating that it catapulted me to find out what I had. After much research, I found out my horrific mouth pain was a condition called Burning Mouth Syndrome (BMS). It is not unusual for a Sjögren’s patient to develop BMS.

What was your quality of life like at this time?

The pain was unrelenting and I could find no relief. Yet during this time, I met and married the man of my dreams. All of a sudden, I had everything to live for! Despite my wonderful marriage and joy, however, I continued to get sicker. I became consumed with trying to find answers. I was so incredibly ill and honestly had no quality of life. I was unable to make or keep plans, could barely get up the stairs, and couldn’t do the simple things that we all take for granted.

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What did you do to try to help yourself?

My husband, Alan, and I are very much a team in our shared path to wellness. He’s my biggest supporter. Together, we began taking numerous supplements and started an anti-inflammatory “clean” diet, excluding gluten, dairy, and highly processed foods. It was definitely another piece of the puzzle, but I was still very sick. I became a research maniac. I ran across LDN on one of the Sjögren’s Facebook® pages and knew in my heart it was my answer. I asked my rheumatologist to prescribe LDN and he responded, “I don’t do that voodoo medicine.” He told me there was NOTHING more he could do for me without getting into the “big cancer meds.” I would have been devastated had I not had a Plan B.

What was your Plan B?

I found a Functional Medicine doctor in my little town. During my first consult, I asked him about LDN and he told me that he had read about it for the first time the day before my appointment. He thought LDN sounded interesting and knew it couldn’t hurt me, so he wrote a prescription.

After 4 months on LDN, my Sjögren’s was considered to be in remission
What happened when you started LDN?

Alan and I both started taking 1.5mg of LDN on June 22, 2016 at 11 pm. The next morning, it was amazing. Brain fog that I wasn’t even fully aware I was having, lifted! As I slowly increased my dose, other symptoms also began to dissipate. After 3 months on LDN, my kidney “numbers” were back in the normal range…no more Chronic Kidney Disease! A month later, my antinuclear antibodies (ANA's which had been very high, as high as 1280, for years) were NEGATIVE! After 4 months on LDN, my Sjögren’s was considered to be in remission. As of October 2016, there was no detectable autoimmune activity in my body.

I would say that my BMS is 60% better after starting LDN
Did LDN improve your Burning Mouth Syndrome?

I used to be consumed with mouth pain all day long prior to LDN, but I have days now that I don’t even remember I have BMS. I would say that my BMS is 60% better after starting LDN. My doctor and I are convinced that continued use of LDN will eventually eradicate the BMS.

Taking LDN, I no longer deal with debilitating fatigue, muscle burning, chronic pain, migraines, interstitial cystitis, and painful dry eyes
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How has life changed for you after starting LDN?

I feel wonderful! I exercise daily…I’m on the elliptical trainer each day for an hour! Taking LDN, I no longer deal with debilitating fatigue, muscle burning, chronic pain, migraines, interstitial cystitis, and painful dry eyes. I can make plans without the fear of having to cancel them, and we travel without constraints. After LDN, I am no longer limited in what I can and cannot do! In addition, it has been wonderful seeing the positive impact of LDN on Alan, and on our family dogs (Rocky’s story and Maggie’s story). Taking LDN together as a couple has also brought us much closer.

Did you continue to take both LDN and Plaquenil®?

Once in remission, my doctor suggested I wean off the Plaquenil® over several months. I did so and still felt great. However, after a strenuous 2 week hiking trip in Europe in August 2017, I started feeling fatigued and my ANAs turned positive again. I restarted the Plaquenil® and the fatigue left. I was feeling fabulous again. As of January 2018, my ANAs are negative. YAY! It seems a combination of LDN and Plaquenil® is probably a better fit in my case, at least for now.

The vivid dreams from the LDN were wonderful; unfortunately, I no longer have them, but I sleep like a baby
What approach did you take regarding LDN dosing?

I began taking 1.5 mg, and would increase by 0.5 mg every 3 weeks or so. Typically, an increase would have no side effects. Occasionally, I would have a little fatigue with an increase, which would resolve within a couple of days. The vivid dreams from the LDN were wonderful; unfortunately, I no longer have them, but I sleep like a baby. I am now taking 4.0 mg and remain at that dose. I notice that people who start with a low dose (0.5-1.5 mg) and increase slowly (0.5 mg every 3-4 weeks) seem to acclimate to LDN much better and find their ideal dose more easily.

LDN has taken me from a life of despair to feeling like I’m top of the world
What would you most like people to know about LDN?

You have absolutely nothing to lose and everything to gain. LDN is safe, non-toxic and inexpensive. Side-effects are minimal, and it can have potentially wonderful, life changing results. LDN has taken me from a life of despair to feeling like I’m top of the world. Never in a million years would I have believed that I could feel normal again. It scares me to think where I’d be today had I not found LDN. And thanks to the internet and Facebook®, I have been very fortunate to help others start their journey with LDN. I have seen them experience the same wonderful results as I have. We are so grateful for the positive changes LDN has made in our, and others', lives.

More About Cindy:

I married the love of my life, Alan, in 2014. He has been my rock through this journey with Sjögren’s and Burning Mouth Syndrome. We are retired and live out in the country in Harrisonville, Missouri. I enjoy painting, decorating projects, travelling, long walks, gardening, and of course spending time with my amazing husband and 7 grandchildren! I honestly never thought I could live a normal life again. But thanks to LDN, I am living the life of my dreams. I spend much of my time helping others who also suffer with autoimmune disease, in hopes they can avoid the pain and suffering I have endured. I pray my story brings hope to those searching for answers. LDN has been my miracle and who knows? Maybe LDN could be your miracle too. If anyone has questions, I am happy to help. Feel free to contact me at cydecamp615@gmail.com.