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Cindy & Alan: "LDN is The Best Health Decision We've Ever Made"

Alan and Cindy Camp Koshak
June 26, 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.

About Osteoarthritis:

Osteoarthritis (OA) is the most common chronic condition of the joints, and is also called degenerative joint disease or degenerative arthritis. In OA, the cartilage (rubbery material that acts as a cushion between bones) breaks down, causing pain, swelling and problems moving the joint. As OA worsens over time, bones may break down and develop growths called spurs. Bits of bone or cartilage may chip off and float around in the joint. In the body, an inflammatory process occurs and cytokines (proteins) and enzymes develop that further damage the cartilage. In the final stages of OA, the cartilage wears away and bone rubs against bone leading to joint damage and more pain. OA most often affects the knees, hips, lower back and neck, small joints of the fingers and the bases of the thumb and big toe.*

LDNscience was pleased to interview Cindy and Alan Koshak, who started LDN together as a couple, about their joint "LDN journey". Starting LDN at the same time enabled Cindy and Alan to give each other support, to compare experiences in real time, and to observe changes in one another. They are thrilled with the positive differences they've seen since starting LDN, and they hope sharing their LDN story encourages other couples to be proactive regarding their health.

Alan, what was your approach to having an ill life partner?

This Sjögren’s journey is one that we decided we were going to work on together. I knew Cindy had the condition when we met (see Cindy’s story). You fall in love with somebody…and you take them for everything they have. Cindy and I are a team in everything we do, in all walks of life. Going through life as a team makes life so much simpler, so much more encouraging. We can build each other up. I can't stress how important it is.

What was the hardest part for you about Cindy’s illness?

Of all the pain that Cindy suffered through, the Burning Mouth Syndrome (BMS) is the one that she “telegraphed” even though she tried to hide the pain. That's one kind of pain that I can pick up on as a husband because we love to talk and she'd suddenly become quiet. I know her quiet is because her mouth is hurting. That's heartbreaking as a husband, because I see is my role is that of a protector, and with this, I was helpless.

Before you started LDN, Cindy wanted to try a pretty rigorous clean-eating diet to see if it would improve her health. What did you think about joining her?

Originally I said, “I can’t do without my bread!” But we discussed it and I decided I wanted to do it together with her. Cindy talks as though it was a sacrifice on my part to change my diet as well, but it's not that at all. It was an honor. What it's done for me is that it's made me healthier. I'm the healthiest, and fittest, and the lightest I've been in my whole adult life. That’s because we did it together.

Alan and Condy Koshak
What factored into your decision to start LDN along with Cindy?

LDN was certainly appropriate for Cindy because of her Sjögren’s, but it was also appropriate for me because of my osteoarthritis. Even though you research and research, there's still no substitute for experience, and we wanted to do this together as a team.

Once he started the LDN, it didn't take too long before he was anticipating the pain and…it wasn’t happening.
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What was it like watching Alan go through his “LDN journey”?

Alan always says that he fell in love with me doing dishes. In fact, I remember after the first meal we cooked together, he was about to lean down to put a pot into a low cabinet and he cringed in anticipation of the osteoarthritis pain he knew was coming, because it always did (see Alan’s story). Also, I would watch him on the treadmill…he doesn't show his pain and he doesn't say too much about it, but I know him well enough to know it was hurting him. Once he started the LDN, it didn't take too long before he was anticipating the pain and…it wasn’t happening. It was so wonderful seeing him get up on the elliptical trainer…not having that discomfort. He’d be coming in from mowing the lawn for hours and hours, and he would recover so fast. Before LDN, it would take days for him to recover. But once he was on the LDN, he would recover almost immediately. It was pretty remarkable.

What post-LDN change were you most surprised to see in each other?

The mental clarity is amazing. I became much more articulate. Alan noticed it. I kept telling him I had brain fog, and he wasn't real sure he believed that until I took LDN and became much more articulate! Then the same thing happened to him as well. He's so articulate and intelligent, but even he acknowledged LDN was definitely doing something with his mind…he felt much clearer than he had for years and years.

LDN is really amazing. It’s the best thing we've ever (truly, ever!) done for our health.
How would you describe what it was like to go on an “LDN journey” together?

It was exciting for both of us, and it was neat that we were able to compare on a daily basis the changes we were experiencing. LDN is really amazing. It’s the best thing we've ever (truly, ever!) done for our health. We even put our family dogs on LDN and they had incredible results too (see Maggie’s story and Rocky’s story).

That's what a doctor's job really is…a coach, not someone you should rely on for all the answers.
You had an interesting experience when you both went to a doctor to request LDN. Can you share it?

After the first doctor Cindy consulted with declined to prescribe LDN, we approached the doctor in our little town of 10,000 people. We told him about Cindy's Sjögren’s and my osteoarthritis, and we explained about the LDN that we had read about. His response was, "I would love to be your coach on this journey." That was an absolutely remarkable thing. That's what a doctor's job really is…a coach, not someone you should rely on for all the answers. We, as individuals, are the ones that are in charge of our health care. If a doctor suggests something contrary to what you’re comfortable with, or won’t consider something that you do want, then perhaps it's time to go find the answer somewhere else. We rely on a doctor’s training to give us advice and to be a coach, not to make decisions for us.

Alan and Condy Koshak
How did you notice that Cindy was feeling better after she started LDN?

With Cindy I noticed it because, all of a sudden, here's this gal that was having trouble exercising, and now she gets to where we're up to working an hour a day on the elliptical machine! I can hardly hold her back it seems! The smile, the glow had come back to her face. It's so rewarding to see that. It’s a comfort knowing now that LDN is helping her Burning Mouth Syndrome. I seldom see Cindy having a "bad mouth day" anymore. That makes me very happy.

What encouragement do you give to those who have ill partners?

It's so important for a spouse of an ill family member, or even a father or a mother of an ill family member, to know that you don't have to have a cut or a visible symptom to have proof there's an illness. The thing that we deal with in Sjögren’s is…you can see that my wife looks beautiful. So it's an invisible illness, I guess we could say. I think that too many times spouses think their partner looks fine and seems fine, so it's got to be “in their head”. Listen to them. People don't cry out for no reason. And it's so difficult to go through something like this alone, so it’s important to be there for your loved one.

Cindy tries to give hope to people on these groups by sharing her LDN story, educating others, and empathizing with what they are going through, even while she is in a much better place with her own health.
From your perspective, how has this health journey changed Cindy?

What I admire so much about Cindy is how she devotes herself to encourage others with Sjögren’s and BMS. She does so particularly on Sjögren’s and BMS Facebook groups. It’s painful to have to be in these groups. It’s painful to talk about all the difficulties one is going through. And it seems that those people who find relief tend to leave the groups because they no longer have a need to talk about their pain or a reason to listen to others dealing with it. Sadly, the effect is that those left behind never realize there’s hope out there. Cindy tries to give hope to people on these groups by sharing her LDN story, educating others, and empathizing with what they are going through, even while she is in a much better place with her own health. I think that really says something about the kind of person she is.

Now there are a lot of people taking LDN for BMS, which is really exciting because they're starting to see relief from it.
Is sharing your LDN story with others meaningful to you?

Definitely. I’ve learned that you can make your illness purposeful. All the suffering we endure is not in vain. There's reason behind it, and you can help other people. So that's what we've tried to do, to turn it into something positive by getting the word out there about LDN. I've mentioned it many times on Sjögren’s and BMS Facebook® groups. Now there are a lot of people taking LDN for BMS, which is really exciting because they're starting to see relief from it. That's a very unexpected and exciting outcome from all this.

Do you find that you and Alan, as a couple, have become “ambassadors of LDN”?

For some reason, people seem to be affected by our joy, and often ask us why we are so happy. We start to tell our story, and before we know it, we end up talking about LDN! It’s is so neat to be able to share our LDN story. We feel very, very blessed. If we can help somebody out there, we're just thrilled to pieces. We welcome anybody that would like to ask questions.

She said that her sister-in-law is doing things she hasn’t been able to do in years, and doesn’t take MS medication any more…she only takes LDN. She said it’s the most remarkable thing she’s ever seen.
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Do you find that others share their LDN stories with you too?

Increasingly, yes! For example, we were at the doctor recently and saw a nurse practitioner. While going over my history, I told her that my Sjögren’s is considered to be in remission now, and it’s because I take LDN. I asked her if she had heard of it. Her eyes lit up, and she said, “You aren’t going to believe this. I have a sister-in-law with MS (multiple sclerosis), and after I read about LDN, I suggested she try it. Her brain lesions are almost nonexistent now.” She said that her sister-in-law is doing things she hasn’t been able to do in years, and doesn’t take MS medication any more…she only takes LDN. She said it’s the most remarkable thing she’s ever seen. It’s really neat to connect with others who also know about LDN.

What advice would you give other couples dealing with illness?

I wish there was a way to make partners of ill spouses understand that they need support. They need love. They need to be understood. They do not need to be written off. I don't know how people do it without the kind of support that I receive from Alan. I know people manage, but I don't know how they do. Having this team effort makes all the difference in the world. Alan is a team kind of person. It was probably instilled within him in the Air Force. He's taught me an invaluable lesson…just to be there for one another no matter what.

When we found the LDN and started it, it was like being given a second chance at life.
How would you describe the life change you’ve experienced since starting LDN?

When we found the LDN and started it, it was like being given a second chance at life. My life is absolutely wonderful again. I feel on top of the world. I thank G-d every day when I wake up, and I see this man lying next to me. I am so happy. Life is good. LDN has truly given me my life back, without question.

We're going to be newlyweds for the next 30 years! That is what LDN has done for me.
What’s been the biggest life change for you, Alan?

That right there (Cindy’s happiness) is the biggest improvement, the biggest thing, that LDN has done for me, because it just makes my heart warm to see that. I've got my bride back. I never lost her, but I've got her back. And we're going to be kids for the next 30 years. We're going to be newlyweds for the next 30 years! That is what LDN has done for me. I'm a lucky guy. We met late in life and our goal is to make this last as long as possible. LDN is a crucial part of that. It's done wonderful work for us, and it just makes my heart warm to see her happy.


* www.arthritis.org

More about Alan & Cindy:

We met late in life, and feel incredibly blessed to have found one another. As soulmates, we don't take a single day for granted and do everything we can to have a long and happy life together. We consider ourselves a "team" and support each other in all that we do. We love to cook together and prepare healthy "clean" meals, exercise, and even started LDN together, one of the best decisions we've ever made for our health! We are incredibly grateful that LDN has worked so well for both of us, as well as our family pets. We truly believe that it is our mission to help educate others as they begin their journey with LDN. If you have any questions you'd like to ask us about our LDN experience, please feel free to email us at [email protected] or [email protected]