Find us on:

"Miraculous is Not an Overstatement": Sandy's Turnaround from CVID and Sjogren's

Sandy Burkett
October 15, 2018

About CVID:

Common variable immune deficiency (CVID) is a disorder that impairs the immune system. People with CVID are highly susceptible to infection from foreign invaders such as bacteria, or more rarely, viruses and often develop recurrent infections, particularly in the lungs, sinuses, and ears. Pneumonia is common in people with CVID. Over time, recurrent infections can lead to chronic lung disease. Affected individuals may also experience infection or inflammation of the gastrointestinal tract, which can cause diarrhea and weight loss. Abnormal accumulation of immune cells causes enlarged lymph nodes (lymphadenopathy) or an enlarged spleen (splenomegaly) in some people with CVID. Immune cells can accumulate in other organs, forming small lumps called granulomas. Approximately 25 percent of people with CVID have an autoimmune disorder, which occurs when the immune system malfunctions and attacks the body's tissues and organs. Individuals with CVID also have a greater than normal risk of developing certain types of cancer.
See source.

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.

Sandy, would you give us a brief summary of your “health journey”?

I’ve been a chronically ill person my entire life, since I was a child. I was very ill for many years without any diagnosis. It was just my “normal” to be constantly sick with various infections, pneumonias, hospitalizations. I actually had 1 1/3 lung removed at age 14 due to how ill I was. Not until 2012 was I finally diagnosed with an autoimmune condition- Sjögren’s syndrome- and I started to be treated for that. A year later, I was also diagnosed with a severe immune deficiency called Common Variable Immune Deficiency (CVID).

How was your CVID discovered?

It’s typical for many CVID patients to have low immunoglobulin levels in a few different areas. But in addition to that, there are a series of standard tests that are done to see if a person can develop antibodies, and a person with CVID often fails to develop them. For me, they gave me a pneumococcal vaccine, and I was unable to develop any antibodies to it. That was the big clue that I had an underlying immune deficiency.

How does not being able to develop some antibodies affect one’s life?

Even if a patient has raging symptoms of a condition, if are unable to produce antibodies that are looked for in order to diagnose a disorder, a traditionally trained doctor that relies solely on blood test results will likely conclude that the patient doesn’t have the disorder. However, since some patients with CVID can’t produce those antibodies, it doesn’t mean they don’t have the condition, it just means they can’t produce that piece of supporting evidence. This makes it very difficult for some patients to get diagnosed and treated for various disorders such as Sjögren’s, Lupus, and Rheumatoid Arthritis.

What treatments did you try?

Early on when I was diagnosed with Sjögren’s, and with lupus and rheumatoid-like arthritis features, I started taking Plaquenil®. It helped my energy level some, and my pain a lot. But I started losing huge chunks of hair, and although I wasn’t sure if it was caused by the disease or treatment I was receiving, I saw conversations online about such a side effect from Plaquenil®, so I attributed it to that. I stopped the Plaquenil® a month or two after I started the LDN. I have not missed the Plaquenil® and my hair loss has normalized.

Sandy & Sandy @ Cigna Health Fair
How did you find out about, and obtain a prescription for, LDN?

I have been facilitating a Sjögren’s support group for about 5 years. I also see a rheumatologist, and because of the support group, my physician and I have become friends. I refer patients to him, and he refers patients to my support group. I asked him about LDN, and said he’d never heard of it. I went home and did a lot of research, and read about people’s experiences with LDN on online forums. Six months later, I went back to my physician and told him I wanted to try it. He told me others had been asking him about it as well. He agreed to let me try it.

Did you start taking LDN as soon as your physician agreed?

I could not take LDN right away because I was taking opioids, which I knew was a contraindication. I have had a long surgical history (around 20 or so surgeries), and therefore issues other than autoimmune ones causing pain. I have neuropathy and chronic pain that doesn’t go away. The opioids helped, but never really made it all go away. Also, due to the opioid crisis in America, I was constantly made to feel like a drug seeker. I got tired of that. There is a group of people in this country that really are in pain and need real help. The stigma around taking opioids was difficult to deal with. That’s why, when I discovered LDN, I really wanted to try it. However, I had been on these drugs for years…a Fentanyl® patch and oxycodone for breakthrough pain…it was a typical way of life for a long time. However, I was so motivated to try LDN that I took myself off all the opioids and pain meds. That took time and the withdrawal was quite challenging, but since nothing else had worked, I was determined to try LDN.

There is a group of people in this country that really are in pain and need real help. The stigma around taking opioids was difficult to deal with. That’s why, when I discovered LDN, I really wanted to try it.
Looking for a prescriber to consult about LDN?
Find one in your area
What dose of LDN did you take over what course of time?

Once I was finally off all my pain medications, I started with 1mg of LDN, and didn’t really notice anything. When I moved up to 3mg of LDN next, I noticed a huge change in my energy level. Like, “Oh, wow! What’s happening?! This is greatl!” Then I moved up to 4.5mg where I have remained, and it’s just been great. It took a matter of weeks, probably 4 to 6 weeks to go from 1mg to 4.5mg. My doctor originally planned for me to move up more slowly, but an internist friend of mine (who was also on LDN) advised that it was just fine to move up more quickly, so I spoke with my doctor and we agreed I could move up in dose more quickly. From the time I started taking 3mg of LDN, I have never looked back. I noticed a huge difference in my energy level. It did help my pain level, but it made an enormous impact on my fatigue. I went up to 4.5mg, and it’s just been wonderful.

From the time I started taking 3mg of LDN, I have never looked back. I noticed a huge difference in my energy level. It did help my pain level, but it made an enormous impact on my fatigue.
What has been the biggest impact on your life of being on LDN?

My entire life, I have had debilitating fatigue that has gotten worse through the years with both of these conditions, and was overwhelming. Running a small business is very difficult to do when you have that debilitating fatigue...not only just being functional in the workplace, but also in your own home. It was not uncommon for me to need to lay down 2-3 times during the day for 5 or 10 minutes, maybe 15, and then try to get back at it and keep going. That has completely changed since I’ve been taking LDN. It’s been, to me, miraculous, and that’s not overstating it at all.

It was not uncommon for me to need to lay down 2-3 times during the day for 5 or 10 minutes, maybe 15, and then try to get back at it and keep going. That has completely changed since I’ve been taking LDN. It’s been, to me, miraculous, and that’s not overstating it at all.

Also, I think that one of the things that you get, aside from all the symptomatology of whatever illness that you have, is some depression. Whether that is situational from being sick all the time, or whether that’s part of the illness, LDN has helped with that as well. It’s not only that I have enough energy to make it through any day without collapsing two or three times a day, it’s also that I feel better, mood-wise, pain-wise, energy-wise. LDN’s made a profound difference in my life.

It’s not only that I have enough energy to make it through any day without collapsing two or three times a day, it’s also that I feel better, mood-wise, pain-wise, energy-wise. LDN’s made a profound difference in my life.
Do you need a pharmacy that knows how to prepare LDN?
Visit our extensive international pharmacy directory
You still receive other treatments for your conditions. How do you know the LDN is responsible for the positive changes you’ve seen?

I receive a 4-5 hour IVIG infusion every other Sunday to help my immune system. But I had been doing that for years before starting LDN, and never noticed the change in fatigue level. With the IVIG infusions, the week before the infusion you are really exhausted, and the several days after the infusion you are really exhausted, so I have a very small window of what I would call optimal functioning. I have been receiving those infusions for years, and never noticed that they have ever helped the fatigue…in fact, I felt I had added fatigue from the infusions. But the LDN has changed that, so I know it’s the LDN that is responsible for the improvement.

Have you seen changes in your lab work since starting LDN?

Yes. In the time before taking LDN, I had frequent lab work done. I could clearly see there were elevations and lab values that were off, such as markers of inflammation, etc. Within the past year, since starting the LDN, I’ve had lab work done, and my results were beautiful. I haven’t done anything different but the LDN, so I feel it had to be the LDN that normalized my lab values.

Within the past year, since starting the LDN, I’ve had lab work done, and my results were beautiful.
Did you notice the same kind of pain relief from LDN as from opioids?

Not to the degree that the opioids had. It helped, and I could tell it helped, but I also feel much better off of opioids. The LDN helps me so much energy-wise and mood-wise, that the pain…I’m trying other avenues (meditation) to address the remaining pain that isn’t relieved by LDN.

What does your physician think of LDN now?

What’s really cool is that now he has a number of patients on LDN. He said to me at a visit recently, “You were the first patient I put on LDN, and now I have a lot of patients on it, and they’re all having a lot of success with it.” I thanked him for being the type of physician who cares enough about his patients to try this. I don’t want to generalize about physicians, but they are generally trained to pay attention to studies only, and if it’s not proven in big studies, then the evidence is considered anecdotal and that’s that…they won’t consider it. Understandingly, I really appreciate my own physician’s willingness to be open to LDN. He is now a firm believer. The last time I saw him I said to him, “I am never going to be without LDN again,” and he said, “There’s no reason you need to be.”

Understandingly, I really appreciate my own physician’s willingness to be open to LDN. He is now a firm believer.
What advice would you give if someone is hesitant to try LDN because their physician isn’t knowledgeable or on board with the idea?

This is a drug that is very benign. If it has any side effects, they are very few. You owe it to yourself to try whatever you can to feel the best you can, and to function the best you can. What do you have to lose by trying something that may give you great benefits and gains? If the doctor you normally see says “no,” find somebody else willing to work with you. LDNscience.org has a list of them. Find a prescriber and try it. You try other things in your life….try this and see. As with any medication, it’s not going to work for every person that takes it. But for a great many patients, it does work. It’s definitely worth it to find out. You owe it to yourself.

What is the main message you’d like to give others who may be in the position you were before taking LDN?

My biggest message to patients is that you have to advocate for yourself. I’ve had many years of dealing with many physicians, and was treated by some of them in such a condescending way that it will shut a person down from obtaining treatment. I’ve spent my entire life being ill and not getting the answers I need. I’m neither a hypochondriac nor a cyberchondriac because I do research on the internet. I need answers. And if doctors aren’t giving me those answers, I will find those answers myself.

What is the biggest thing you’ve learned from your experience with LDN?

Quality of life is important. People who are chronically ill often don’t have the best quality of life. For something that is so easy to try, you should try it. You can feel so much better. If I sound crazy enthusiastic and bubbling over about LDN, it’s because I am. When you have spent a lifetime feeling sick, and you find something that works, is not expensive, and is so simple and easy to use with so few side effects, you have to try it. It’s made a huge difference in our lives- my life, my mom’s life, and her cat’s life. We are very happy to have found LDN. I tell patients in my support group about it. I tell anyone who will listen. It’s not often that you come across a drug that works like this for so many different conditions. It’s amazing and everybody should know about it.

If I sound crazy enthusiastic and bubbling over about LDN, it’s because I am. When you have spent a lifetime feeling sick, and you find something that works, is not expensive, and is so simple and easy to use with so few side effects, you have to try it.

You can read about Sandy’s mother’s positive response to LDN for her dementia and the amazing recovery of her mother’s cat from cancer using LDN by clicking the link here.

More About Sandy:

Sandy lives in Pittsburgh, PA. with her husband, Steve and their Shichon puppy, Ivy. When she is not running her small business with her husband, Sandy enjoys writing. She pens 3 blogs (one about aging ungracefully & other oddities; one about her chronic illness journey with Sjogren’s Syndrome and one related to her business). Sandy also enjoys the opportunity to apply her creativity to new endeavors, such as: sculpting and paper mache. Sandy is excitedly looking forward to the very near future when she will become a first-time grandmother.