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How A Struggle With Lupus/RA Ended With LDN

Kelly Peterson
September 01, 2016

About Lupus:

Systemic lupus erythematosus (SLE), commonly known as lupus, is an autoimmune disease. Like all autoimmune diseases, the body’s immune system attacks the body because it confuses it with something foreign. Common symptoms of lupus include joint pain and swelling, severe fatigue, fever, anemia, swollen lymph nodes, chest pain, mouth ulcers, hair loss, and a red rash which is most commonly on the face. Other symptoms and complications can develop depending on the parts of the body that the disease attacks.

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Kelly, can you tell us a little about the history of your medical condition?

After my last pregnancy in 1985, I started to feel very unwell. Whatever illness came along, I got it. I kept getting thinner and thinner, achier and achier. I was really quite a pathetic sight. Eventually, they diagnosed me with lupus (and later with rheumatoid arthritis as well), but I refused to believe it. I had read up on the disorder and, because I did not have all of the symptoms (like a skin rash), I thought they were crazy. But I was trying to work and raise kids, and just trying to get up in the morning was a big deal.

When I got to the point of spending more of my time in the hospital than at home, I finally accepted the diagnosis.

The doctors wanted to put me on methotrexate. I told my husband that anything that starts with “METH” cannot be good for you! But I was at (what I thought was) my absolute bottom and needed to fight my way back up, so I started the methotrexate. They also automatically put me on antidepressants as well. I didn’t think I had ever been depressed-- I just didn’t feel good. Putting me on those medicines started a vicious cycle as well. Then came along the steroids, which caused me to gain 40 lbs (18 k.g.) in a matter of months. When I’d look in the mirror I’d think, “I don’t even know you.” While on those treatments, things got so much worse. I had to quit working. The treatments seemed to boggle my mind and I literally couldn’t think correctly. I couldn’t drive. I couldn’t function on any level. It was a bad time.

How did you find out about low dose naltrexone (LDN)?

I had been going to a support group for people with Lupus and Rheumatoid Arthritis (RA). About 8 years ago, a woman in the group shared with us that she had been going to Dr. Burt Berkson and receiving low dose naltrexone. She explained that she had already been on it for a while, and hadn’t said anything to us because she didn’t want to pass the information along if the doctor and the treatment didn’t turn out to be legitimately helpful. But because she got to the point of feeling so much better on LDN, she finally decided to share the good news with the rest of us.

This was particularly welcome news for my husband. Because I had been so unwell, especially with the “treatments” I’d been receiving, my husband really pushed us to find something different. We tried a number of things, and even drove 12 hours in order to see an alternative medicine physician. His approach of prescribing many supplements (which I couldn’t tolerate) didn’t help, although he did start me onto a path toward a better diet. The fact that past things we’d tried hadn’t worked well didn’t discourage my husband…when I told him what I’d heard in the support group about LDN and Dr. Berkson, my husband said, “We’re going!”

What happened when you started LDN?

Over the course of about 12 months, Dr. Berkson and I worked hard to get me off all those other treatments. He also started me on LDN and specific supplements.

I started living again. It was probably around 6 to 9 months when I started to see significant benefit from the LDN. It took about a year and a half until I was feeling really good.

I was able to return to work and now I’m even managing a feed/lumber/hardware store. I was able to start driving a car again. In the morning I jump out of bed. At night, I’m tired, but I think you should be good and tired at the end of a long, productive day.

What dosage of LDN works for you?

I take 3mg of LDN. I started with that as well. At one point Dr. Berkson tried to move me up to 4.5mg, but because the higher dose gives me occasional nightmares, and causes vivid dreaming and restless nights, we backed down to 3mg again. I’m perfectly fine on that dose.

How have things changed most since starting LDN?

If you test my blood today, I’m basically negative for both lupus and RA. My rheumatoid factor was in the 600’s/700’s originally, and now is in the low teens. It took about a year to bring it down to that level. And remember the symptoms I had while on the other treatments: inability to think, constant migraines, yeast infections, urinary tract infections, pneumonias? Remember how I was constantly getting sick, and in the hospital more than out of it?

This feels a bit crazy to say out loud, but…after starting LDN, I have not had even a cold in probably 6 years. That is a super big milestone for me.

And I work around people! People are in and out of my store all the time, and they’ll cough on me! But I don’t get their illnesses. Only every once in awhile, if I’m not taking good care of myself and not drinking water as I should, I’ll get a urinary tract infection. But even then, it’s not like it used to be, with me ending up in the hospital with IV’s and all of that. It’s a quick trip to the little clinic here to get some antibiotics, and then I’m over it. And as long as I eat well , my hands and big toes don’t bother me with intense pain and redness like they used to. I can’t even imagine going back to the way things were. But I have not been sick in a long time and I’m such a happier person now. A much happier person.

A number of people you know take LDN. How are they doing?

There were 5 or 6 of us ladies in my support group that would get on conference calls to discuss how things were going. Out of those women, I believe LDN helped all but one. And I think it also helped her for a while; I don’t know if she didn’t follow the dietary recommendations or wasn’t faithfully taking the pills, but she went back to taking methotrexate and all that other stuff for some reason.

There seem to be a lot of folks suffering from autoimmune illness in our community; those who have chosen to receive LDN treatment have been helped tremendously.

I was the first one using LDN in my area that I know of, but I’ve been telling everyone I can about it. Now there are maybe 8-10 other people I know of that go to Dr. Berkson’s for treatment… people with RA, lupus, fibromyalgia, you name it.

Did you experience any obstacles to relating to your LDN treatment?

Even though we have insurance, LDN is not something it pays for. I personally don’t care how much it costs, because my health is priceless and it’s worth it. But it is a factor for many people and that’s sad. It shouldn’t be that way. Also, people come from so far away to see Dr. Berkson. It seems to me that this treatment should be much more widespread and more easily accessible.

What is the main message you would like people to know about LDN?

There are people I know that just can’t give up the pills they are on. It’s very hard for some people to consider trying LDN. If that woman in my support group hadn’t told us about it, it might have been a much longer road to trying it. I want to shout about LDN from the tallest mountain. Life beyond lupus and rheumatoid arthritis is absolutely fabulous.

 

In order to help others with lupus/RA, Kelly has generously made herself available for those who have questions. She can be reached at [email protected].

More about Kelly:

I live with my husband of 39 years on a ranch in Southwest New Mexico. We have three wonderful children and 10 spectacular grandchildren. We spend a lot of our time helping out the kids and chasing after the grandkids with their activities. Life is at it's fullest when family is around and our lives are over flowing.