LDN Video Interviews and Presentations

Radio Show interviews, and Presentations from the LDN 2013, 2014, 2016, 2017, 2018 and 2019 Conferences

They are also on our    Vimeo Channel    and    YouTube Channel

 

Welcome to the LDN Radio Show brought to you by the LDN Research Trust. I'm your host Linda Elsegood. Today we're joined by Ray Solano from PD Labs. He's also a nutritionist. Could you tell us a bit of background about yourself?

 I am dedicated to getting out the word on personalized medications. We have a specialty pharmacy located in Cedar Park, Texas that's north of Austin, Texas. We focus on being able to help people in the community who have mold and Lyme conditions and autism so they can get special medications in the right dose for them. We have a full-size clinic, that lifestyle medicine clinic as well, to really be able to help people learn their nutrition balance as well. We're located in 48 states and soon to be in our brand-new facility here in Cedar Park. It is a 7,500 square foot building that will be able to grow with the community, to service them, because personalized medicine is going to be here to stay.

Wonderful. So what got you into pharmacy? 

Fortunately I've been involved in pharmacy since the early 70s. I have been able to really take medicine to a different level. l have a background in nuclear pharmacy, a very advanced technology at the time, and found my way back into compounding pharmacy over about 25 years ago, and realized that traditional medications are just not going to be able to serve people the way they're supposed to. Medications have to be personalized. Different forms, different dosage forms, different routes of administration. Previously I did a lot of sterile compounding. It is important for people to get better as opposed to just taking 15 or 16 different medications a day. Can you believe that some people still take that many medications? This is the reason why we started to be able to do this. We very recently expanded. We've merged with Hopkinton Drug, who's really been one of the leaders in low dose naltrexone for years. We merged our companies together and are able to give first class service and quality to all the patients nationwide. 

You were saying about people taking 16 drugs. I've known many people who start off with two or three and then they would take the fourth medication and of course every drug carries a list of potential side effects. You probably will never get any of them or you might get one or two of these side effects, but when you start putting a cocktail of medication together, the chances of getting a side effect becomes higher. 

I know many people who have taken four or five, and then they have to take another medication to combat the side effects. As the number grows, then they're taking like seven or eight; they take another medication because they've got more side effects. It's really not helpful for the patient to continue down this route. Not only that but they still don't get the wellness they're looking for. Sometimes they get worse. 

Unfortunately their core metabolism just becomes nutrient deficient. Their core levels of metabolic rate decreases. They gain weight and their self-image goes down. They're also finding out that their ability in energy level decreases. Unfortunately we usually have a shell of a person. It is unfortunate but you know the worst part about it is there's no end in sight. This is why many times we get to the root cause of the problem and this is many times what we're finding in low dose naltrexone is a good starting point because then they can start to corral some of the problems and get people off of some of these medications. 

This has done an amazing thing in the pain community and the chronic alcohol community. It is just amazing when we start to unravel all of these chronic conditions of how we start with this therapy and we're able to really change people's lives. It also helps people wean off of opioids. It is a really big thing. 

What doses do you go down to? 

We go down to as low as one microgram. We were a sterile pharmacy so we can do micro dosing. We do a lot of vasoactive intestinal peptide as well. We are used to micrograms as well. Low doses are something we're familiar with. One of the things that we have done that's unique is being able to take these doses and be able to make a special tablet. It is the pharmaceutical industry that uses these ingredients, but they call a cyclodextrins to be able to enhance absorption through the cell walls for these pharmaceuticals take these large molecules and give them a little bit of it an accelerator for the body to absorb them. We use these beta cyclodextrins and we make them into a special tablets so that patients could be able to change the dosage for themselves. Being able to get to the drug we get the right amount of drug and have the least amount of side effects. You know many times when people take low dose naltrexone they start in one dosage form, in a capsule form. Usually sometimes 0.25 milligrams or a 0.1 milligram, and then they have to titer their way up, and then have to get another prescription. They have to get a different strength. This is a way that people to take a half of a tablet and get started and then be able to use the full dose three four weeks from now. It ends up being less expensive for the patient. 

Special technology is making tablets, which is a specialty in itself. We feel that we’ve been doing it for the last 10 years and we were able to really make a difference in getting the best therapy tablet for patients. 

Can you do a sublingual LDN? 

Yes, we can do sublingual drops. We've been doing that for patients, especially children and some of our seniors. Being able to master all these dosage forms for patients is something that specialty pharmacies are able to offer for patients. Sublingual tablets, sublingual drops or something that is very important for many people. 

Dr Jill Smith discovered with her Crohn's patient that taking sublingual drops, that it was absorbed, bypassing the stomach. It was more effective for those patients. There are other patients now that are choosing the sublingual. We find that sublingual is more expensive in the UK. I don't know whether different dosage forms at your pharmacy are more expensive than others. 

We are specialists in these sublingual tablets. We've been doing oxytocin sublingual for many years, and being able to use these tablet forms and to able to change up the bases that are absorbed, special ones, sublingually is very easy to do. It's not really more expensive at all, not that I have seen. Sublingual routes and nasal sprays are just a great way to bypass the stomach, because many of these patients are having a very difficult time absorbing. We use the special tablets, they get absorbed sometimes much better than capsules. 

Do you find the nasal spray helps with dry eye? 

We haven't seen very much of that. We definitely think that nasal sprays bypass the blood-brain barrier with special additives. They get absorbed so much faster. Unfortunately we haven't seen a huge increase of that here in the US yet. It is something that we're going to be promoting. because there are so many patients who would like the LDN eye drops. but because they have to be made in a sterile facility they have to be made per patient. There's not a shelf life on them. They are probably expensive, too. It makes the unit price exorbitantly expensive 

I've yet to find out myself and I've not ever tried any LDN nasal spray. and I suffer with dry eye that the nasal spray possibly could help the dry eye because it goes up the canal. 

We've made low dose naltrexone nasal spray in combination with ginsenoside R3. It's a special neural regenerative compound to stop the combination of brain inflammation. We've done a combination of those and launched that about two years ago. We have the experience to be able to do LDN nasal sprays. It's a very stable compound. It's very easy to work with. It has good dating for patients so it's something that they can be able to put in the refrigerator and be able to hold on to it for many months. That makes it economical as well which is important. Sometimes these medications can get quite expensive. 

What would the shelf life be on nasal spray be if you kept it in the refrigerator? 

Many of the regulatory law requires studies to be able to give the dating information, but we have found that at least 30 days is a minimum. We're looking at expanding that to 90 days stability. It's something that we're looking forward to. 

One of the things I didn't mention is the topical form of low dose naltrexone for many different dermatological conditions. Conditions such as eczema and psoriasis. It is a perfect additive of oral and topical as well. It's very stable. It's really important to get to the right pharmacy that understands the correct technology of being able to get penetration through that dermis skin layer. That's something we've really worked on extensively and looked to have tremendous results. I have spoken to dermatologists and pharmacists to compound LDN in topical as well as the capsules or tablets. Some doctors use both in conjunction with each other. For some conditions they prefer that people just take oral. 

The doctors that you deal with, what would you say is the most common for dermatological? 

We have a special relationship with our practitioners. It's a collaborative practice. We look at the patient to see what's best for them. We look at a case-by-case basis and they ask our opinion what's the best choice for the patients. Many times, by the time they come to us, these people, the patients, have conditions that have been ignored by many years. We'd like to be able to be aggressive at first. We recommend a combination therapy initially because it seems that they can turn it around much quicker as well. I found speaking to patients who take it for let's say psoriasis, alopecia, Behçet's syndrome, Hailey-Hailey disease to name a few, that the dermatological conditions take longer to respond than autoimmune conditions as in Crohn's disease or MS, chronic fatigue. It seems as though it needs to get into the system for quite a few months. Sometimes it takes six months. 

People have told me before that they have reverse of symptoms. Have you found that to be true? 

Yes, it is really important to be able to have the technology to get past the dermis layers. PD Labs has really started a patented process for the use of transdermal Verapamil for Peyronie's and planters fibromatosis and Dupuytren's contracture. They are all the same fibrotic tissue disorders. We've really been able to perfect the absorption across many types of different layers of subcutaneous tissue to be able to get localized absorption at the source. We've been able to take LDN and put it with transdermal Verapamil for Dupuytren's. We find it to be incredible at how fast it works. It’s important to get the right condition to have the right special base that gets absorbed and penetrates, and there's a number of different products out there that have special qualities that can get very quick absorption. It's really important because you don't want people to suffer. You want them to be able to get quick absorption. Unfortunately many of these special bases can be a little bit pricey because they're very proprietary and they're very unique. You're pushing the limits of transdermal absorption that almost rivals the fast blood levels like an injection. To be able to get people turned around quickly we find that these patients do so much better with being able to target that area very quickly because you don't want to suffer for six months at a time. 

If somebody had alopecia would they have to rub the preparation on their scalp as well as taking it orally? 

That's what we recommend. We use a combination therapy because we're able to get blood levels quicker. All these topical conditions are usually linked to gut dysbiosis and many other conditions that ultimately are able to express themselves as a skin condition. Any type of skin condition we're looking to repair the gut first. We have a number of different peptides that are used to be able to repair the gut as well. Once we are able to do that the skin heals so much faster and that's why it's so important to do both. 

Would rubbing something in your hair which makes it greasy and then that makes you want to wash your hair more be beneficial? 

No, it doesn't have to be greasy. There's cosmetically appealing lotions that we do a lot with patients' hair. They don't have to be oily. They have to be somewhat moisturizing to the skin and not drying the scalp. You can get absorption and have that smooth cosmetic feel, because nobody wants to put on something makes their hair look greasy, especially women. There's no way we're going to be able to tell them that your hair is going to look greasy. They just won't do it. Because then you'd want to wash your hair, which would be pointless of putting it on if you're then going to wash it off. There's ways to do it, and you know, it's really important when you partner with a pharmacy who has a can-do attitude and has a big tool chest. 

What are the tools that we have available? We've got a number of consultants that work for us and we've got a number of patented medications under our corporate umbrella. So we're very fortunate that we keep on digging until we can find a solution. 

Does PD Labs make their own supplements? 

Due to regulatory compliance, we don't really make them ourselves. We design them and have a special dietary supplement manufacturer strategic partner that will fulfill, make those to our custom specifications. Many times we're able legally to put a prescription drug with some of these nutritionals so they can combine them together. Many times what we do is take nutritionals and combine them with the specialty FDA approved drugs to be able to solve many of these conditions. Many times we find things like traumatic brain injuries and stroke and many of these patients that we're able to target medications using this type of therapy. 

It is really important to look at the whole body and look at the whole patient because they didn't get sick overnight and it’s going to take some time to get them well. We put a little sprinkle, a little fertilizer, at the same time. 

When you make your tablets do you do capsules as well? 

We do capsules. We do lots of capsules. 

Are you able to put nutritional supplements in those if the patient wants ginger for example. I know some people request magnesium or whatever. Are you able to do that for them or offer advice on which you think is the best? 

We do. We've got a lot of requests for items when people feel that they are having a reaction to the fillers. Many times what we find is that the body is having an over expression of histamine. Many times this over-expression of histamine is due to a metabolic imbalance that is occurring because the body's mesenchymal immune system is offline. If we can turn those systems back on, then their histamine levels or responses are normalized. It's sometimes not the small little filler that's in the capsules that is causing their problems. It's the whole body's over-amount of histamine. We're just sometimes really careful you know, because the absorption of ginger, let's say we put ginger in with LDN, do we know how much LDN is getting absorbed? Or maybe that the problem is that if the dose is too high, then they're going to get some of those same side effects. It could be the dose needs to be decreased, so that we can really modulate those side effects. I find many people feel it's almost a sign of defeat that they have to go backward in the dosing. After listening to many of your lectures it's usually that the dose is too high. 

As you said at the beginning, personalized medicine is what suits that person. Some people have it in their mind they need to be taking 4.5 milligrams. They think they have got to get to 4.5. They will think they did so well on two and a half and then went to three and didn't feel quite as good and now they feel terrible. So they think they have to stop taking it because it doesn't work for them. If on two and a half you felt wonderful then it appears that was probably the right dose for you. You should go back and see how you feel on 2.5. It's not that you're giving in. It's not a case that you've failed to reach the 4.5, you should celebrate the fact that you found the dose that works for you. 

We found that many times people are taking capsules and when they switch over to tablets they say they felt so much better on the tablets or sometimes they say I feel worse with the tablets than the capsules. We have found many people get much more positive effects at one and a half milligrams and two milligrams as opposed to 4.5 milligrams. Sometimes there's kind of a bell curve that sometimes the 4.5 milligram is something that is not really the standard. It should be maybe one and a half milligram. It should be more of a standard because we only want the body to have just as much drug as it needs. Low-dose sometimes is better than higher dose. That's what we found.

It was really interesting talking to you. Can you tell people how can they get in touch with you? 

Yes, we have a website: PD Labs that's Paul David Lives, pdlabsrx.com. You'll find a huge amount of information on LDN and all the other specialty pharmaceuticals that we do. We've got a podcast and also our TV spots. We make it very easy for people. Our phone number is 888-909-0110. We're in the continental US right now. We're looking to see how we can do this internationally, but as you well know there's a number of customs and hoops we have to go through. We're not giving up on it. 

Well thank you very much for being our guest today. 

 

 

The LDN 3: To Purchase with discounts before 1st September 2022 Go to ldnresearchtrust.org/ldn-book-3 for full details

 

 

LDN Webinar 18 May 2022 (LDN; low dose naltrexone)

LDN Questions Answered Live by

Pharmacist Dr Masoud Rashidi - LDN Specialist
Dr Sato-Re
Dr Mathewson

Sponsored by Innovative Compounding Pharmacy icpfolsom.com

 

Anne-Maree - Australia: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Anne-Marie from Australia who is 47 at the moment has suffered from Hailey-Hailey disease since her twenties. It was always misdiagnosed as eczema until about three and a half years ago after a biopsy revealed the true cause. It began with outbreaks under the armpit which would then develop a bacterial infection. The severity of these outbreaks has increased with age.

The recurrent infections were always treated with antibiotics. Her GP began investigations and a biopsy was taken and a correct diagnosis made. 

Following a hospital admission a year ago when her condition had worsened and she was being treated intravenously Anne-Marie did some research and discovered LDN and a Facebook worldwide support group of Hailey-Hailey disease sufferers.

Within two days of taking low dose Naltrexone prescribed by her forward-thinking GP, she noticed a distinct improvement with no introductory side effects. She began with only 0.5ml and gradually increased the dosage. The outbreaks dried up quite rapidly which was significant as the main problem with this disease is the risk of secondary infections. As a result of prolonged use of steroid creams causing thinning of the skin, she is susceptible to these. A mere scratch can trigger a Hailey-Hailey outbreak.

Instead of antibiotics, she is now able to treat the infections naturally with tea-tree, lavender and vinegar. 

Living on the coast she is now, thanks to LDN, able to go to the beach, take her children swimming and do volunteer surf lifesaver work.

She recommends it to all fellow sufferers.

This is just a summary. To hear the full interview click on the link.

Rusti - US: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Rusti from the US shares her story of Hailey-Hailey Disease. Rusti first showed symptoms when she was 25 years old but by the time she got to her forties she was bedridden for four months out of the year and couldn't even function.  

Rusti found out about Low Dose Naltrexone (LDN) on social media while she was researching Hailey-Hailey disease and eventually found a doctor who prescribed it.  At the time of this interview, Rusti had been taking Low Dose Naltrexone for four and a half months.  She had no side effects at all and says she is 98% better than she was. Rusti is one of six children and her other siblings also have Hailey-Hailey Disease, she is afraid her children will also suffer from the same and wonders whether LDN could be given to them as a preventative measure.

Robin - US: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Robin had Hailey Hailey symptoms mildly as a child but by the time she got to her thirties it had become debilitating.  She heard about Low Dose Naltrexone (LDN)  on social media and her own doctor prescribed it for her.  Within a few weeks Robin noticed that things weren’t getting worse, she increased her dose gradually to 4.5 mg and by that time her symptoms were gone, the pain was gone and she was so much happier.

Ray - England: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce Ray from England who takes LDN for Hailey Hailey's disease. Thank you for joining me, Ray.

Ray: Thank you very much for asking.

Linda Elsegood: could you tell us about your Hailey Hailey's disease when you first started to notice symptoms?

Ray: I first started to notice symptoms on my body about seven years ago.

Linda Elsegood: what kind of symptoms?

Ray: I was getting a breakdown at the skin at that time, which was mainly centred around the neck on the left and the right sides. It was blisters. It was becoming infected, and it was rubbing on shirts obviously when I was working as a teacher.

Linda Elsegood: And what did your doctor say? What medications did they give you to help?

Ray: I was prescribed some cream and then some antibiotics. Basically, what was happening was the outbreaks were lasting for about five to six weeks. And then they were going into slight remission, but the breakdown was starting to come back again.

Over a period of time, the outbreaks were getting worse because it was becoming sorer and it was breaking down with more regularity. In 2009, 2010 I got massive eruptions in my groin area and also on my chest under my arms and my neck was really bad.

Linda Elsegood: Was stress a factor that made it worse?

Ray: Stress is a factor. LDN in the UK is off license, and although I had remarkable effects with it and remarkable benefits, I was going to see my consultant this week. I was anxious that she was going to turn around and wash your hands of me as other people have.

So I was mindful of that. A couple of days beforehand I started getting spots of it coming up on my stomach. But I don't think that stress, he's everything. I think is a contributing factor but it's not the sole actual reason for it.

Linda Elsegood: Well, if I can take you back to before you started LDN, how did you go about obtaining a prescription in the first place? How did you hear about LDN?

Ray: I heard about LDN from the self-help group that I'm involved with which is, Hailey Hailey's Disease New Approaches. This was started off by a lady called Lori and Thomas. And there are 70 people involved in that now. We're trying to help each other through this.

One or a few there had LDN prescribed, and I saw that they had it. So started researching it because once I found out what Hailey Hailey disease was, the congenital effect of the calcium pump and that he was hereditary, I started looking into it. I did a vast amount of research and came across the work of Dr. Bernard Bihari. That's how I found out about LDN.

Linda Elsegood: And how long ago was that?

Ray: That was about January this year when I started, I was formally diagnosed with it in October last year.

Linda Elsegood: So when she heard about LDN, and you could see that other people were taking it, what did you do about getting a prescription?

Ray: I had spoken to my GP to see if there was any chance that he would prescribe LDN for me, and he said he couldn't because all the directives that have come from the local commissioning group on prescribing off licensed drugs. I then spoke to my consultant about LDN, and she said that she couldn't do it either. So I wrote to the commissioning group in the UK asking them if it was possible. I had been referred by my consultant for laser treatment on this which I wasn't really keen on because that was just going to affect the skin surface.

It is a cosmetic reconstruction. It wouldn't affect the cause but they refused as well because he didn't fit that criterion. So I wrote to the chief officer of Dudley in the commissioning group and I wrote to him five times. I tried to phone him three times. He wouldn't speak to me, so I knew I was getting absolutely nowhere. My consultant had used LDN in the past and she was quite happy with the research that I'd done and was willing to give it a try. She wrote the request for LDN for me through the hospital board but was rejected by the commissioning group. So I knew that this is going to happen and I knew that wasn't going to get anywhere. I got 5 letters ignored. I went to my GP, and I said:" Look, if I get this myself, would you supervise me?"

And he responded to me that if I got it, I was taking it he would have nothing to do with it, so I felt right Okay. So I stopped all antibiotics in February, all opioid painkillers. So on the 28th of February, I had filled my supply of LDN, and I gradually started to build up from 1,5 mg up to 4,5 mg over a period of time.

I've now been on it for just over a month. I've been on it for five weeks.

Linda Elsegood: You are very kind to offer us a before and after situation which people can see at the end of the interview and it is absolutely amazing.

Ray: I mean, I would go so far as to say that has changed my life. One little thing that people will suffer from it because of the pain and the pain is constant. It's 24 hours a day. You can't sleep, and there are some people that I know who have this on her back.  They can't sleep on their back. Unfortunately, I don't, but he doesn't matter because in the groin chest and armpits, if you move around in bed, which we all do, then the pain of that wakes you up.

So for the period of time, I was getting on average about two and a half hours sleep at night which was not exactly doing me any good either.  I haven't worked since last June because I can't stand in one place very long. I can't sit for very long.

I certainly can't drive because I can't get into driving position. Now what the LDN has done, it's transformed. It's taking the pain. It's healing dramatically. The groin area is slightly improved, not as the neck. But then again,  I'm not expecting it to work as fully in other areas but my underarms, my chest is clear. I'm able to basically live a more normalized life. I'm bathing four times a day. I'm still not ready for going back in front of the classroom for the kids. I think it's important to say that the support that I've had from the group from LDN research trust and from a consultant is giving me hope, optimism and determination to get this thing kicked into touch.

Linda Elsegood: What about your sleeping pattern now?

Ray: Sleeping is more or less normalized. I might wake up once in the middle of the night one for 15, 20 minutes and then I get comfy again and go back to sleep.

Linda Elsegood: And that in itself has an impact on everything, doesn't it? just being able to get your rest and have asleep?

Ray: You wake up in the morning and you know you still got it, it's still sore in areas, but you're actually seeing the thing getting better. It motivates you that something is happening. I may be on it for the rest of my life. I may get a taxi in the future but at least I will know then that I have something that works, something that is helping me, and something that's restoring my quality of life.

Linda Elsegood: Well, that's excellent.

I think you might find it's a drug for life, but because it's not toxic and it's not going to do you any harm, there's no reason why you shouldn't take it.

Well, that is amazing. How about if we in six months time do a follow up to see how you're progressing?

Ray: That's great. I mean, anything I can do to provide information that will help anybody else that's what we'll do. One of the things that I've done at the moment is, I have been recording everything on a daily basis religiously. I've been taking blood pressure measurements because I do suffer from, blood pressure, which is managed but nevertheless, I have got slightly high blood pressure, and there's been no change in blood pressure. It is stable on both sides. I've been noticing the dosage the symptoms, the areas, sleep patterns, mood, appetite and documenting everything that I'd been doing every day.

And honestly, I can say that I have had absolutely no side effects of this. The literature states that you are the best advice to take this st 1,5 mg and go up, after about a two week period by one milligram, so 1,5 mg, 2,5 mg, and then 3 mg. I did it a bit quicker than that and in about three weeks. I suffered no adverse effects from it whatsoever. And it may well be that because I've taken 4,5 mg quite quickly  I will go down to 3 mg and then see you, and will keep on measuring to see what happens after that.

But there are no side effects that I have come across at all. And that in itself is marvellous. I've also taken steps to engage my MP with this method about it being a full license and he has written to the commissioning group. And if he doesn't get any response, then I'm prepared to take it to the secretary of state for health.

Because I feel that the evidence that I have and the images that I have been living proof that this particular medication is invaluable for anybody who has Hailey Hailey disease.

Linda Elsegood: Well, I'll look forward to speaking to you again in six months time. Right?

Ray: Okay. Thank you very much, indeed.


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.

Patti - US: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Around six years ago Patti began to notice boils and rashes appear all over her skin. Although the doctors initially prescribed antidepressants which made the problem disappear, the rashes and boils reappeared following the passing of Patti’s son in 2001.

Thankfully, Patti discovered Low Dose Naltrexone (LDN) and its many benefits with Hailey-Hailey Disease.

“Within a month I began to feel better. My blisters and skin in general began to clear. It’s really helped me to get back on track. LDN has done the trick for me.”

This is a summary of Patti’s interview. Please listen to the rest of Patti’s story by clicking on the video above.

May - Holland: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

May from Holland uses Low Dose Naltrexone (LDN) for Hailey-Hailey Disease

May from Holland suffered with Hailey-Hailey disease for 2 years before finding LDN. This disease involves painful blistering, weeping, infection, and scabbing all over the body. No treatments resolved her problem until trying Low Dose Naltrexone. Within 2 months on LDN her skin was back to normal and is staying that way. Listen to her remarkable transition from extreme misery to total healing.

May - Netherlands: Hailey-Hailey Disease (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

I’d like to introduce May, from the Netherlands, who takes LDN for Hailey-Hailey disease. Thank you for joining me. May 

May: You're welcome. My pleasure. 

Linda Elsegood: Could you tell me about Hailey-Hailey disease to start with? That would be a good point. 

May: Yes, I can. Hailey-Hailey disease is a very rare skin disease. Most of the time you inherit it from one of your parents or family members. In my case, I don't know anybody in my mother's or my father's family that has the disease. So I don't know if I inherited it or was just born with it. We’re always born with the disease. It's very rare. It causes blisters into the skin layers, as there is a defection in the calcium pump, which doesn't make the skin layers to layer in a normal way. So actually the skin just collapses in the way. And blisters come from the inside and they come to the outside. And you will get some blisters on your feet and soles. And most of the time the sores will get a secondary infection or bacterial infection. And very often it isn't treated very well by the doctors either, because they don't know much about it. In my case, I was diagnosed with Hailey-Hailey in 2011. I know now that I had it for many years before because my doctor always said it's kind of exceeding eczema or an allergic reaction to something, or she also said it was herpes simplex, but now I know that it was Hailey-Hailey

Linda Elsegood: Did it break out where it gets worse some periods of time than others. 

May: For instance, when your immune system is weaker, or you're going to be sick, like the flu or having a cold, my experience is that the break has come then. I think because, at that time, your body isn't strong enough 

Linda Elsegood: What about stress?

May: Yes, definitely. I try to avoid stress as much as I can. And I guess other fellow sufferers also experience when they are stressed that it's more common to have a breakout. Also heat; you have to try not to sweat a lot, so heat can also be a trigger to let the disease come out.

Linda Elsegood: What treatments did the doctors give you? 

May: When I got diagnosed in 2011, I got steroid cream from my doctors, and in the beginning, it worked, for just a couple of months; but after that, it didn't work anymore. The first time when I had a major breakout it lasted for about nine and a half months, the breakout, and it was under my breast, also covered most of my stomach and on my back. My doctor didn't actually treat me very well, because in the beginning, she said it was shingles. I just became very ill, and I almost couldn't walk. I couldn't drive my car anymore, and I couldn't sleep. I only slept for two, three hours a night, and I wasn't taking the medication themselves. So just my normal, my normal life was just, I couldn't do anything anymore.

Linda Elsegood: It sounds very uncomfortable and very painful.

May: Very uncomfortable It's very painful because it takes a big part of your life, because you can't function in a normal way anymore. So I went back to my doctor - actually, another doctor was sitting there as she was sick - and when he saw the sores he says this doesn't look very good, because the sores, the crust, they were just greenish or yellow and it was smelling. So he said there is something wrong here and I want to take a culture to see if there was any bacterial infection. And at that time I had a major, major bacterial infection. So I had to be treated with antibiotics and the infection went away, but the sores didn't go away. So he said, I can't treat you anymore, I have to send you to a dermatologist. And they took a biopsy, and that's the only way they can say that this is Hailey-Hailey, the only way is to take a biopsy. And that's when I go to the steroids or the cortisone, and they've worked for a short while, just a few months. And then the breakouts came back again, and with both breakouts, I have a major breakout. I say they lasted for about nine, nine and a half months. And the second breakout at the end, I was like, okay, there is nothing they can do. I just have to live with this disease. I didn't get any happier with this and felt kind of depressed in a way, and you're not able to live the life you want to live. Just the same simple daily things, they're just impossible to do actually. And that's when I came to another dermatologist - they wanted him to do second opinion, and it still showed Hailey-Hailey. 

About that time I just typed on Facebook Hailey-Hailey, so I came to a Hailey-Hailey site on Facebook, and that's really changed everything for me. I met fellow sufferers because you don’t know anybody else in your surrounding with the disease. And that's the first time I heard about LDN. I saw the words, the letters LDN, and I asked people what LDN is? And they explained to me what LDN was and their experiences with LDN. When I heard that, I just thought I have to try this, no matter what, I have to try this. And a month later I had an appointment with my dermatologist in the hospital, and I was really also prepared for the battle with him. Cause I thought he wouldn't go along with this. So I mentioned this to him.

He had never heard about it and didn't know what it was. I actually said to him, no matter what, if you do not give it to me, no, I will get it in another way, because Laurie had also told me she could help me get it in another way. So I said to him, I'm going to do it with, or without you.

And after a week or so he called me back, and he said, okay, okay. I would like to try it. And at first, you said, okay, you had to try a 12 and a half milligram. I said, no way, that's not possible because they didn't know of low dose naltrexone. He said to break the tablet, take one piece of the tablet. So I said, you have to listen to me and please, prescribe me a prescription of 1.5 milligrams because I know a pharmacy that's gonna make it for me. So he went along with that and I think 28 or 29th of November, I started LDN for the first time. And within a week, I felt I had more energy. I actually felt so much better than I had been in many months actually. And I also think I overdid things in that first week so off the bat, I felt more fatigued, but I felt much stronger. And just after two, two and a half weeks, I started to see improvement with my skin. The sores, the wounds were drying out, crusts were not green or yellow. And within the middle of the three weeks, it was really starting to heal. My skin was really starting to heal and in January, and let's say about half of January, I was just completely like, my skin was completely clear. Completely clear. Everything was gone. So for me, that was a big miracle. 

Linda Elsegood: So how many years was it that you had it really, really badly. 

May: The problems started for me in 2011 for that one major breakout. Before that, especially in the summertime, I had some small breakouts, but I didn't know what I was having, but now, of course, I know. I didn't have any big problems before 2011.

Linda Elsegood: So how many months were you on LDN before your skin cleared totally? 

May: Almost two months. And then it was totally clear, not one spot. 

Linda Elsegood: Unbelievable, amazing.

May: Yes. My doctor used to phone me every two weeks to see how things are going. I said, boy, you’re in for a big surprise when I come to my next appointment because I'm clear. He said, no way, that can't be possible; and I said yes, it is. My next appointment was in February with the dermatologist, and when he saw it he was just silent. He couldn't believe it. He was just so amazed because he said I didn't have any belief in it. Not any belief. He said, I just had to go along with you, as she said she will get it anyway. I couldn't just let you do this on your own, but he said I had never heard about it, never. And he was just amazed. 

So they took pictures before I began and when I came back, they took pictures. When I came back the first time I had a small rash left, just some crusts. And then when I came back the second time, I was completely clear. They took pictures again, and they were just amazed by the results. 

Linda Elsegood: So is your doctor prescribing LDN now for other patients?

May: I went to see him yesterday and he’s still with a big smile and relief. And he said there was one other patient in the hospital with inherited disease. That patient didn't react to the steroid or cortisone cream. So he had shown my pictures to another doctor, and the doctor treating the other patient now wanted to prescribe LDN to their patient. But the patient wasn’t sure if he wanted to take LDN, but they will try to make him change his mind. So I thought that was amazing because they never heard about LDN and now they are trying to convince another patient to take it. Wonderful.

So I'm going to study about Hailey-Hailey and LDN because Hailey-Hailey disease is one of the few, or maybe the only diseases that are not autoimmune - all the other diseases that people take it for, most of these diseases are autoimmune diseases. So I think it's very interesting also, why does LDN help Hailey-Hailey. 

Linda Elsegood: Thank you ever so much for sharing your experience with us. It's been very inspirational, and I'm sure there are people out there with Hailey-Hailey disease who will now think about LDN, and I hope they encounter a prescribing doctor. Thank you. So thank you very much, May.

May: Okay. My pleasure. 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.