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Linda Elsegood: I'd like to introduce Cindy from United States who takes LDM for Hailey-Hailey Disease, fibromyalgia and chronic fatigue syndrome. Thank you for joining me, Cindy.
Cindy: Oh, you're welcome.
Linda Elsegood: Could you tell me when you first started to experience these symptoms?
Cindy: Well, the Hailey-Hailey Disease, I had a major outbreak about 20 years ago, and then it was pretty much in remission until 2009, the fibromyalgia and chronic fatigue syndrome I've had for 35 to 40 years.
Linda Elsegood: And will you give me anything back then for the fibre router and the chronic fatigue?
Cindy: No, in fact back then they didn't even have a diagnosis for it. They just said it was all in your head back then.
Linda Elsegood: that's helpful. Isn't it?
Cindy: Yeah, really, not very.
Linda Elsegood: So when you developed Hailey-Hailey Disease, was there anything they could give you to help with that?
Cindy: They ended up putting me on antivirals and using a topical steroid cream that first I thought I had shingles and they weren't really sure exactly what had triggered it. Um, that was the episode. Twenty years ago, then when I had the episode in 2009, they thought it was poison Ivy, and they put me on oral steroids, but it didn't heal the problem. It just continues to spread across my body.
Well, the Hailey-Hailey Disease, there was a lot of pain when it spread across my body. What has happened to me with Haley, Haley is different than some of the other suffers and that I get a blister and from the blister. I can then develop a secondary viral infection, which is like herpes simplex,
which can spread very rapidly across my body. And if that's not gotten under control quickly, it feels like a severe case of poison Ivy and, and a burning, uh, the fibromyalgia. I was just in intense chronic pain all the time.
Linda Elsegood: So before you found LDN, What would you say your pain levels were like on a score of one to 10, 10 being the worst on a bad day.
Cindy: Oh, gosh.
Seven to eight, really? For the fibromyalgia.
Linda Elsegood: On a good day?
Cindy: Well, they were all. They were all bad days. Really. I'm someone who has it all the time. I didn't have episodes of remission really.
Linda Elsegood: How did you hear about LDN?
Cindy: I heard about it on our Facebook Hailey-Hailey Disease site. We have a worldwide support group, and one of the members had the idea that it might, might help Hailey-Hailey Disease
Linda Elsegood: And how did you go about getting a prescription?
Cindy: Well, I kept asking my doctors, I asked my dermatologist, and he wasn't particularly interested. And I asked my primary care doctor, and she wasn't very interested. And I finally found a new young primary care physician, and he had read an article about LDN in a journal.
About a year prior and he remembered that there weren't side effects and he was very open to it. So he prescribed it to me.
Linda Elsegood: Well, that's very reassuring having a doctor to that thinks outside the box.
Cindy: well, and the other thing I'll say about him that was so surprising is that he was a new doctor. I did not have a relationship with him, and he was still willing to go ahead and prescribe it, which I found very encouraging because he was that open to it. I think, especially as a younger doctor,
Linda Elsegood: when you first started, did you notice any introductory side effects?
Cindy: I had a little bit of the Herc thing on and off. Um, I felt like I had the flu at various times when I would try to increase my dose. I started on a low dose, and as I would increase, it was almost like I had this cleaning out effect and I felt flu-like, so I would cut my dose back. So I'm one of those people that had to increase it very, very slowly.
Linda Elsegood: And what did you notice initially when you first started taking LDN improvements wise?
Cindy: Well, the first thing I noticed was what I considered almost miraculous on the third night, my trigger points, which are fibromyalgia trigger points that are just so tight and miserable. And my shoulder, neck area started to loosen up.
And I, I mean, I just couldn't believe it. Cause I had taken all kinds of medications over the years and had trigger point injections at a pain clinic and everything and nothing, except that the trigger point injections, which are like an anaesthetic, that was the only thing we would ever open it up like that.
And the LDN on the third night opened it up. And so it was just amazing. And the, that Haley Haley. I, it was more gradual. I just noticed my skin just sort of gradually clearing up.
Linda Elsegood: how long have you been taking LDN now?
Cindy: For several months, maybe six or seven months.
Linda Elsegood: And have you had any further outbreaks on your Hailey-Hailey Disease?
Cindy: I have. I have, I have small ones, but the thing that I've noticed is they seem to, um, get under control much more quickly. I will say that, um, Haley, Haley is a genetic disorder and my father had it. And unfortunately, my father died when he was 60 years old. And I remember that he suffered more in his later years in life. So I'm 56 now. And it seems like. My Hailey-Hailey Disease has been getting worse in the last few years. So it's hard to exactly say how much improvement I've had because I think without the LDN, my Hailey-Hailey Disease was on the path to continually get worse and worse and worse. So I'm happy if I just keep it under like a mild control if that makes sense.
Linda Elsegood: And what would you say your pain levels are now on a, on a bad day?
Cindy: with the fibromyalgia. I would say it's more like on a bad day, more, five to six, definitely much more manageable.
Linda Elsegood: You said before that every day was a bad day. Do you get any good days now?
Cindy: Um, that's tough because I still have really severe problems with chronic fatigue syndrome. I, I haven't had as much of a pickup from the LDN with the chronic fatigue syndrome as I had hoped. So I don't ever have really great days, but
I will say that I think the LDN has helped my outlook on life and I feel a little more positive and. A little more upbeat. So even on the bad days, I don't feel quite as a downer is blue.
Linda Elsegood: good. I mean, there are doctors that prescribe LDN for depression. Mmm. That really helps lighten the mood like you were saying. So that's quite promising as well. What would you like to say to other people who are contemplating trying LDN? Chronic fatigue, fibromyalgia or Hailey-Hailey Disease
Cindy: that I really wish they would give it a try and that even if they have to go very slowly and start on a very low dose, that it's worth it, it was really worth going through that I did. Um, it's definitely been more sticking with, and I wouldn't trade it for anything.
And it's so much more effective. There are so many of the medications out there that caused such side effects. I would encourage everyone to try it. And I have had a number of friends with all kinds of other ailments that have decided to try it. And they're all having good success for many disorders.
Linda Elsegood: do you take anything else for your Hailey-Hailey Disease or fibromyalgia chronic fatigue?
Cindy: Well for the Hailey-Hailey Disease, when I get the initial blisters, now I, if it's severe enough, I use a little bit of topical steroid cream, and I will take an antiviral so that I don't have the chance of it spreading rapidly for the fibromyalgia. No, I don't really, I don't really take anything. Chronic fatigue syndrome.
There's not too much to take either. So there aren't a lot of medicines for these things that I find effective.
Linda Elsegood: Well, that's a very positive story. Thank you very much for sharing it with us.
Cindy: Well, Linda, I want to thank you for your interest in Hailey-Hailey Disease, because it's such a rare disease that there aren't a lot of people that are interested in hearing about it or researching it.
So on behalf of all the other suffers, I really want to thank you.
Any questions or comments you may have, please Contact Us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.