LDN Video Interviews and Presentations

Dr Phil Boyle - Women's Health and Low Dose Naltrexone Part 1 - 04 Feb 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Phil Boyle shares his Low Dose Naltrexone (LDN) story on the LDN Radio Show with Linda Elsegood.

The interview will be about women's health and will be in two parts. The first part discusses menstruation, painful and heavy periods, premenstrual syndrome (PMS), premenstrual tension (PMT), and endometriosis.

Dr Phil Boyle is a General Practitioner with a special interest in infertility, miscarriage and women ’s health. He is the founder and Director of NeoFertility Clinic, Dublin Ireland. He is currently president of The International Institute for Restorative Reproductive Medicine, a doctors' group that aims to publish and scientifically validate Restorative reproduction.

He has helped over 3,500 couples achieve successful pregnancies since commencing practice in 1998. Dr Boyle has published papers in peer reviewed medical journals on restorative reproduction to treat couples with infertility, previous failed IVF and recurrent miscarriage.

Dr Boyle has prescribed LDN for infertility patients since 2004, safely treated over 500 women with LDN during pregnancy.

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

Shauna - Endometriosis and infertility - 25th March 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce my guest today, who is Shauna from Canada, and Shauna, you use LDN for endometriosis and infertility. Thanks for joining us today, Shana. 

Shauna: Thank you for having me. 

Linda Elsegood: So, in your words, how about telling us your story? 

Shauna: I first heard about LDN from my mom, who has been taking it for a few different reasons: fibromyalgia and chronic fatigue and pain and things like that. And she had kind of read up about it through the LDN Research Trust website. And she kept on trying to push me towards taking it to see if it could help with our infertility problems. I kind of pushed back against her because the drug is just not well researched. There's just not a lot of studies that have been done. I asked my fertility specialist, and I asked my GP, and they were firmly against that. So I kind of continued to say no to my mom over a year or so. 

And then we kind of hit a roadblock for fertility treatments. I had tried other types of fertility drugs and treatments over the last three years, and nothing was working, and we couldn't afford IVF. We couldn't afford IUI. There was just no other option. So I went again to my fertility specialist, and I begged him to let me try LDN, just to see if maybe it could alleviate some of my endometriosis and then maybe potentially help with getting pregnant. He firmly said no again. So then I went to my GP, and it took quite a bit of arm twisting. 

I came at it from the point of helping with my endometriosis. I didn't really touch too much on it helping me to get pregnant.  I asked if he believes that LDN helps with inflammatory diseases, and he said, yes. And I said, well, endometriosis and PCOS, I also have PCOS, those diseases are inflammatory, so don't you think that this drug would potentially help me feel better? And he kind of crumbled: we can try it, he said, but I'm putting this all on you, and you're taking responsibility for anything that happens on this drug. So I said, okay, that's fine. And he wanted to prescribe me four and a half milligrams at first, and I tried to tell him that the pharmacy I go to is a compounding pharmacy, they can make lower doses. And he said this is as low as he’d go. The pharmacist said they can make it as low as wanted, so they called the doctor and he took it down to two and a half. I said we need to go down lower, to start like really low. But he ended up not going down any further than two and a half. My mom helped split the two and a half to even lower.

So I ended up starting at 0.5 and then working my way up to five milligrams. And the first thing I noticed back on the drug was that my immune system became like a hundred per cent better. I was getting colds every other week before starting the drug, and I haven't had one single cold since starting it in November. And the only side effect I felt was that when I increased my dose, I got migraines for a couple of days, and I got some nausea. But I was also on other fertility drugs, so really I have no idea whether it was the LDN or not. 

But when I got to five milligrams I found that I wasn't quite adjusting to the dosage and I was feeling quite nauseous, so in December I went down to two and a half milligrams, and I've stayed at two and a half. And then a few weeks after Christmas, I found out I was pregnant. So I had only been on the drug.

Linda Elsegood: Oh, congratulations!

Shauna: Thank you. So I'm six weeks pregnant, and it was the combination of the fertility drugs that stimulate ovulation - that's a separate problem, endometriosis that I have. I don't know if maybe I stayed on LDN for longer without the fertility drugs, it would potentially help me ovulate naturally on my own. I don't know. But for me, I needed the fertility drugs to help me populate and then used the LDN to decrease the inflammation and calm my immune system. Cause I think those were the two things that were getting in the way of the fertility drugs actually working and pregnancy to actually stick, because I had been on them for nine months, and the ovulation was happening, just no pregnancy. 

I did feel that there was a decrease in inflammation in my pelvic area, and I was able to do activities that used to completely wipe me out physically, where I would come home and just have to go lay down because I would be just exhausted and in so much pain. I'm a photographer, so sometimes my newborn photo sessions are three or four hours long, and after those sessions, typically, I come home, and I'm a wreck physically. But when I was on LDN or while I'm on LDN, I found that I could do new sessions and not come home completely in pain, which was really nice.

Linda Elsegood: Oh, wow. That's awesome. That's something. So are you still taking LDN? 

Shauna: Yes, I'm still taking two and a half milligrams, and I'll stay on it until the end of my pregnancy, and then probably continue on it afterwards. It's the only drug that I've been able to find so far that successfully alleviates some of the endometriosis symptoms, without having a crazy list of side effects, which is really wonderful.

Linda Elsegood: Dr Phil Boydell uses LDN in his infertility clinic, and you can see on our Vimeo channel, some of the videos we have of him where he uses it to help ladies get pregnant, during pregnancy, after pregnancy, during breastfeeding; and I interviewed him the other day, and he was saying how the babies are a good weight, they are less likely to need antibiotics on follow-ups. The moms say they're very happy, contented babies. I mean, it just sounds too good to be true. 

Shauna: There was an article I read about LDN, about they're looking into whether or not LDN can potentially help stop endometriosis happening when you're pregnant with a girl, because of the speculation about endometriosis and how it develops, right? Like, does it happen when your baby is growing in utero and you just always have it, like for some people endometriosis doesn't come out of the woodwork until their forties; or for me, it got way worse after I became sexually active.

You know, there's, there are lots of different theories about endometriosis and where does it begin, so I'm hoping that this pregnancy is a girl, and it would be wonderful if I stay on the LDN during pregnancy, if there's a potential of me not passing on endometriosis. There's just not very much good understanding of endometriosis and whether it's genetic or not. And why does it start? How does it start? And so anyway, I mean, that's all speculation. It's all theory, but it just kind of would be nice if I could spare my future baby girls if they did not have to deal with this disease because there's no cure for it. And there are not very many well-known treatments for them.

Linda Elsegood: With your polycystic ovaries, did you find it painful? 

Shauna: Yes. My cycles naturally are 50 days apart. It's like my body just tries and tries and tries to ovulate, and then it just finally gives up, and I sporadically ovulate naturally. And so the months that I do are really, really painful. But then, even the months that I don't ovulate it's very painful because I think my body's just trying its hardest to ovulate and then it just doesn't happen. I've been on fertility drugs for the last two years, so, um, I haven't had those super long cycles as often because the drugs have been regulating my cycles.

Linda Elsegood: Well, it's just amazing that you got pregnant so quickly.

Shauna: I took the pregnancy test because some months I just wanted to get it over with the fact that I'm not pregnant that month, and just kind of. move on. So I ended up taking the pregnancy test at day 30 thinking it's just going to be negative. And I'm just going to be waiting for my period to start and then I can just be depressed and eat some ice cream and then move on.  But it came out positive and I just started freaking out and hyperventilating. The first person I called was my midwife because the midwives’ schedules fill up very fast here. Trying to get under their care is pretty hard. And she's asking me to calm down, that we don't know if this is real, and we’ll recheck the pregnancy test, to be sure it's actually correct. 

Linda Elsegood: How many times did you take it. 

Shauna: I ended up taking two pregnancy tests, and then I went to the doctor the next day, who ordered blood work to check, and then they've been checking me every few days to make sure that my HCG level is going up. And it's more than doubling. So that's really good. Um. Yeah. 

I was blessed with a son, he's three and a half. He'll be four in April. And when I was trying to conceive him, it took a year and eight months of trying to get pregnant with him. And I felt like I had endometriosis back then, but I hadn't been diagnosed yet. Doctors were still kind of just telling me I was crazy. I ended up going on hormone cream, a bioidentical hormone cream from my naturopath and got pregnant within two cycles. I tried those creams again two years ago trying to get pregnant. This time around and it didn't work the same way. So my problems changed after I had my son. My endometriosis I think got worse after pregnancy. I had until about ten months postpartum that my symptoms were pretty well controlled and my cycles were regular, which has never happened in my entire life. And then once I hit ten months postpartum, things just went crazy. Again. I think my uterus settled back into a very tilted position towards my sacrum. And then all the endometriosis came back, like way worse. And my cycles went back to 50-55 days apart. It was a lot worse. I definitely needed the LDN this time to calm all that inflammation down.

Linda Elsegood: So, what did your mom have to say?

Shauna: When I called my mom to tell her that I was pregnant, she was over the moon and I think she was trying to hold back the, “I told you so”.

Linda Elsegood: Yes, that's why I asked that question.

Shauna: The thing is, I could tell over the phone that she is holding it back. She wants to tell me I could have gotten pregnant way sooner. Thankfully my mom has learned a lot of grace. She has seven children, so she's used to asking kids pushing against her. You’d think by now after how many times that she's been right and we've been wrong, we would just trust her.

Linda Elsegood: You'll learn soon enough what that's all about, 

Shauna: Yeah. It's a circle of life. Exactly. 

Linda Elsegood: Exactly. Well, we wish you every success, and maybe you can come back and tell us how the pregnancy went and how the baby's doing and everything afterwards. Yeah. So it is your little boy looking forward to having a baby brother or sister.

Shauna: He likes the idea - he's been talking about wanting a sibling for the last couple of years, but I think he's actually forgotten and I haven't brought it up again with him. Mostly just 'cause I'm a little bit scared  - there's still a chance of miscarriage - so I don't really want to bring it up again with him until I'm a little bit further along. But I think he's really hoping for a little sister because anytime he talks about wanting one, he talks about having a little sister. So we're hoping for a girl too.

Linda Elsegood: Okay. Thank you. Bye 

Shauna: Bye.

Linda Elsegood: This show is sponsored by our members who made donations. We'd like to give them a very big thank you. We have to cover the monthly costs of radio station software, and with phone lines and phone calls, to be able to continue with our idea of sharing. And thank you for listening.

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.

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Dianne Lyme Disease - 18th Mach 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today my guest is Diane from the United States who uses LDN for Lyme disease.Thank you for joining us today, Diane.

Dianne: Thank you, Linda, thanks for having me.

Linda Elsegood: First of all, can you tell us what it was like before you had been diagnosed; did you see a bullseye rash? What actually happened to you? 

Dianne: I did not get a bullseye rash. I did have an unusual rash. Basically, in 1989 I went camping, and I came home, and I could not get out of bed.

And that was the beginning of this journey. I didn’t know what it was; I had to take a year off from school. I was finishing my masters at the time, and I was playing in a band. I was in a country-rock band and had a job with my professor, very active, and it just came all to a halt. So, I quit everything, and I didn’t really get help from the doctors.

I had to figure it out myself.   And basically other women friends helped me with nutrition and supplements. I kind of got back on my feet, but I was never the same after that. I worked for ten more years full time. 

Linda Elsegood: You said that you never really got over it, back to where you were before.  Can you explain at that particular time what it was like living with Lyme disease? What were your symptoms? Why didn't you feel as good as before, even with all the nutritional supplements and things?

Dianne:  I had severe fatigue.  I had a hard time doing daily living, activities of daily living. And then I got a lot of allergies so that I was just allergic to everything. And the trendy thing then was candida, and so I went to an allergist and he started treating me for candida, which means a strict diet.

For a year I went to a naturopath, and my whole life was just getting better.

I had to quit my band. I was never played again professionally in the kind of band where you have contracts to pay for it?  I'm a percussionist, so it's pretty physical.  And that was huge; I think that's one of the biggest losses of my life, actually not having that band anymore. And socially, it's kind of isolating. People don't know what to make of you. So then after maybe six, eight, ten months, I went down to halftime, and I did finish my degree. After a year, I went back and finished my degree. I didn't have the power that I used to have. So, I probably lost 40% of my, in my professionalism in my ability to perform. But you know I got by, that's what you do, you just got by.   So, for the next ten years, I did work full time. I also did get in a relationship. It wasn't very best one, but, yea so that, that got me through the 90s.

And, I was working like a kind of like a social worker, I was a DVR counsellor and a job coach for people with disabilities.  So, I could kind of bank my hours, so I could figure out how I could get through the day.  But I drank a lot of coffee, a lot, but I didn’t know what was the matter with me, I  figured that I would eventually I’m going to figure it out, that I would eventually get better, but I did not, I regret.

Linda Elsegood: Did you know it was Lyme disease at the time? Did you suspect it was Lyme disease?

Dianne:  Well, initially I suspected it, back in 1990, I went to a doctor and they said no, you don’t have a bull’s eye, I’ll give you a week of tetracycline, I think, and it didn’t help.  It didn’t help at all.  Yeah, so I mean, I think that’s the hardest part, not knowing what is the matter with you.

Linda Elsegood:  Yes, So were you still visiting your doctor or had you given up seeing them?

Dianne:  I saw a really good allergist, George Croker from Wisconsin. And he diagnosed me with chemical sensitivities, and he hung in there with me.  I think my insurance paid for a little bit of it,   I got to quit and work part-time again. And then I got worse, my relationship broke up, and then I was homeless when I was sick.

So, I was sick and homeless together.  And there are all kinds of things that happen. Socially,  people don't know if you're the problem, or if my pain was my problem with my family's problem, or my family doesn't know if I'm the problem. My mom always said, how come you can't get through this? You know, I had a daughter with seven kids, and she can get through this, but why, why can't you get through this? Do you know? 

Linda Elsegood: How did you manage to get through this?

Dianne: I, I really have this Irish kind of fight in me. If somebody tries to take something away from me, no, I just fight; and that's what this disease did. I just kept fighting, and to be honest with you. I don't know how I got through it. I just wasn't ready to die 

Linda Elsegood: And how did you hear about LDN?

Dianne: I don't know. I just wanted to get my life back.

Sorry about that. It's kind of hard to talk about. 

Linda Elsegood: Oh, totally understandable. You'll be surprised at how many interviews I've given and have cried. 

Dianne: Yeah, right. Well, I wish that my parents knew, but they died. And so we never knew. So I suppose now I I know, but it would've been nice to know what I was dealing with. You know, to know that I had a disease that kills people. The fact that I see life was kind of awesome actually. That was, I wasn't really living, but I wasn't dying, you know?

Linda Elsegood: How did you hear about LDN? When did that start? 

Dianne: About LDN? Well, I heard about it from a lot of support groups. And it, and they said, we came in, and so I got it.????  I want some women's international pharmacy, you know, saying like it's praising. So I went to my doctor.

I have a really excellent doctor.

So anyway, I went on like 1.5. And it did nothing for me. I couldn't even walk with it, it was way off,  the dose was wrong. And so than a year later I just figured, well, I can't do this. Do you know? I know everybody likes it, but it's not for me. So I'm often a year, someone from my support group said, you know, he got, he got his LDN from a regular mainstream doctor, who put him too high, I dosage and he serious and Somnia.???? So he, he says, go to this, you know, go to this seminar with me.  And I did. Um, that was the, you know, that was, that's not a Creek, and it was hallways security. Um, they had an educator who really said, you know, more is not always better. Less is often better.

He really taught us about dosage. So, um, so I went all the way down to 0.5, and then it was like, Oh my God, I got some energy here. I remember my friend was moving and he, um, needed help with wood. He had a wood farm, and he needed help pet, you know, washing it with, stacking it and getting it ready for sale.

And there was even a gas motor going and all of a sudden I. I was able to work. I was able to work. It was just, wow, I can do this. Do you know? And a couple of my friends are like, are you working? Really? Are you working? You know, like, I thought you would've been gone by now. So that was just really nice. That was at 0.5.

And I, I did it for like three months, and then I had severe pain. I couldn't walk. My joints were really hurting. And, uh, I talked to David at Hoey apothecary, and they were, so what are you for a filler here? And they said it was Avacel, and it was supposed to be inert.

I thought that's not right for me. So I went back to women's international pharmacy. The only filler they use is olive oil, which is, it's always been right for me. So, so I switched. Fillers stayed at 0.5 and I. It was really nice. It was really nice cause the pain went away, the energy stayed. And I just was so. Happy that I could like to go out. I'm a, I'm a musician, so I, I love to go to hear bands and festivals and dance, and I was able to do that. So, It was a big deal for me. You know, it's been years, so that, that was a game-changer. And, I think I stayed at 0.5, you know, and I had lots of dreams.  I enjoyed Low Dose Naltrexone because you get all these vivid dreams It's just like a movie, you know because of your body's adjusting to it. And, I just loved it. I loved it. It really helped me. And then eventually I went up to 1.0 and, I, I knew I wasn't myself, so you don't really like that. So I knew I was at my full potential, but at least I could be more active, which is kind of who I am.

And then after a year, I went to 1.5. Yeah. That would be a year ago, January 2019. I went to 1.5, and I decided to work out more. So just that time I couldn't be losing weight and going down in size. And, and that's hard too because when you get rid of Lyme debris or lime, what goes up lime? It, it's hard on your body too, actually release it.

So, I think by mid-summer, I went to 2.0 yeah. The last one that I went to 2.0 right, well then, then I went up to 2.5 recently, and I think that's too high because. I think it's making me detox faster than my body can tolerate. So I'm going to go back to 2.0.

It push pushes yeast or candida or fungal. It just pushes it out of your body. It's like it kills it, or I don't know if it kills it or just pushes it out, but the detox thing is really big. You really got to detox. Aggressively, if you have Lymes and you're getting rid of the bugs, basically the and what's really got to detox. 

Linda Elsegood: what's your diet like now, Diane?

Linda Elsegood: Did you eliminate any foods in your diet?

Dianne:  Yeah. It's kind of limited. I have coffee, rice cakes and almond butter for breakfast, and the rest of the day is either salad or soup.  I don't eat grains. I did have rice cakes, but I don't need to have the grains. So it's mostly protein and vegetables.

I love fruits, but I've cut that out too. I eat apples sometimes. It's mostly vegetables and protein: red meat, turkey, salmon, white fish, and tuna fish. I have aches every couple of days.  Well, when I go out to eat, it's usually salad or soup, or more like Asian food: vegetables and meat. Really, and I put the rice on the side.

 I don't eat much rice anymore, but I do eat some. But, the best thing is fruits or vegetables and meat for me. Lots of water serves I take like grapefruit seed extract and hot sauce and minerals, lots of minerals, B vitamins. I have this detached, a green smoothie mix called detox detect.  It's great.  So what would I say; that I'm kind of a boring eater. 

Linda Elsegood: What would you say your life is like now in comparison to what it was like before LDN?

Dianne: Well, at least I can live.  You know, before, when tried LDN the first time,  or before LDN, I really could not live my life. I was like, how am I going to get through this day? How am I going to get to tomorrow? And I was heavier. I gained like 50 pounds. I went from 150 to 220 or something like that. I had lots of pain. you know, and I always tried to make the best of the day, but yeah, it was reduced. It was reduced to like, the people that I hung out with were like 20 years older than me, 30 or 40 years on me. That's what my level of energy was.

So I think the best, most wonderful thing with LDN was getting more energy. Even though I'm still tired you get your energy back so that you can maybe be at 75% instead of 50% you know.

Linda Elsegood: So what about pain levels now? 

Dianne: Well, it comes and goes.  Sometimes. It's a 10 like it was yesterday morning. I was like a ten, and then in the afternoon, I went swimming. I swim a lot.  I would like to swim five days a week, I didn't have any pain. I don't have any pain today. So, with Lyme, whatever you're trying to get rid of breaks down, and it really is severe pain, and then when you get rid of it, then you kind of come back to life again. That's the cycle I'm on. When I'm in pain, moh brother, I  just like walk it off.  I just keep walking, until I can move again, you know? Because if I don't, I don't get better. And I know you can't always walk, and everybody can't always walk, so then I swim, in order to move it out of my body.

Linda Elsegood: Well, we're now at the end of the show, Diane, what would you say to other listeners who have Lyme disease, who are thinking about trying LDN?  What would your message to them be? 

Dianne: Number one; don't go with the standard dosage. If you have Lyme, start at 0.5 or even less than that, and don't use Avista or any filler that's not biodegradable because Lyme people have so many reactions.

Stay with something like olive oil, which works for me. Some people use ginger, some people use rice flour.

I created my own ideas, and I went to 0.5 with olive oil. And I started coming back again. So, and a lot of times people are so confused, and they're on the websites because the doctor said, start at 3.0 I probably, every time I'm on the website at least three times, right? I tell them to start 0.5 with bio-degradable fillers.

The pharmacists don't get it. The doctors don't get it. So I'm really grateful to you, Linda because you get it. You know. 

Linda Elsegood: Well, I have to say thank you so much, Diane, for sharing your experiences today. It's very inspirational for other people. 

Dianne: You're so welcome. 

Linda Elsegood: Okay. You take care. Thank you. 

Dianne: Thank you.

Linda Elsegood: This show is sponsored by our members here with donations. We'd like to give them a very big thank you. We have to cover the monthly costs of the radio station software, phone lines and phone calls to be able to continue with their idea of the show. And thank you for listening.

Any questions or comments you may have. Please email me at Contact@ldnresearchtrust.org. I look forward to hearing from you. Thank you for joining us today. We really appreciate it, and your company. Until next time, stay safe and keep well.

Ginevra Liptan, MD Talks about Fibromyalgia (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Summary from Dr. Ginevra Liptan LDN Radio Show August 2020

I am Dr. Ginevra Liptan and have worked hard and tirelessly with people with Fibromyalgia, and I have written a book.

Fibromyalgia is becoming more accepted as a diagnosis. Many more physicians and healthcare providers feel comfortable making the diagnosis and starting the initial treatment.

There's a lot less stigma around it. Now people are really getting much more quickly into the treatment regimen. So that's hugely positive.

I've actually seen Low Dose Naltrexone (LDN) being used more frequently. It used to be only specialists or naturalpath, but I've actually seen at our Academic Pain Centre in Portland, the Oregon Health and Sciences University Pain Clinic, they're starting people on LDN now.

There's more of a sense of there are things out there that can help. There are people that are understanding more about Fibromyalgia.

There are celebrities now with Fibromyalgia. Lady Gaga coming out of saying that she has Fibromyalgia has been huge. I hope, what patients are feeling like that they're not feeling as alone in their struggle. I'm hereby declaring my intent to bring lady Gaga to the LDN conference.

The negatives I see now are using opiates for any reason whether it's acute pain, whether it's chronic pain, opiates are sort of the scapegoat.

I feel like, for the average Fibromyalgia patients, there are so little options in our toolbox that are really accessible to people. For example, cannabis and marijuana-based medicines have great potential but they're not accessible to everybody.

I hope that we can get back to more of that middle ground where opiates have a lot of problems, and we're learning that they really aren't good for longterm daily use, but do have some benefit for short term do use for flares only. That's how I prescribed them because Fibromyalgia is not a steady-state.

There are times where people have huge spikes of pain, and during those times opiates can be hugely effective as a short term kind of rescue option to help bring things back down, and then you go off of them again.

So maybe taking them five days out of the month, five of your worst most intense pain days.

I've anecdotally experimented, and I've found that for some of my patients a little bit of Low Dose Naltrexone (LDN), like 0.05 milligrams seems to limit less than some of the negative side effects from opiates.

I've also found it helps to limit some of the dependence or tolerance issues. If you've been on high doses of opiates over time, sometimes within a few months they become less effective.

Some found Ultra dose Naltrexone helps them titrating it down opiods whilst titrating the LDN up. It eliminated all side effects and withdrawals.

But alongside the opioids,  I use things like Gabapentin, Lyrica to kind of calm down that angry, overactive nerve signalling. I use muscle relaxants for some people, muscle relaxation, and it's like Baclofen can be really helpful for both reducing pain and improving sleep quality. And in Fibromyalgia, sleep is the area that I really work on the most.

If we can get people getting better quality, more deep sleep, their pain levels will automatically reduce because sleep deprivation itself is part of what generates a lot of the fatigue and pain and inflammation of Fibromyalgia. So I use a lot of alternative pain treatments, but I'm usually using ones that also have the added benefit of improving sleep and Gabapentin and Lyrica and Baclofen all have that capacity.

If I'm usually trying to get kind of a two for one benefit, some of the muscle relaxing, like Cyclobenzaprine and also can relax the muscle tension and helps the brain get into a deep sleep and also that gives some pain relief. ...

So I'm trying to reduce the painful nerve signalling, let's say with Gabapentin, but I'm also trying to help people soften their muscle tightness with maybe something like a muscle relaxants. ...

Some people said they benefit from anti-inflammatories like Celecoxib,  Antifa moratorium. That's something that we add into their toolbox.

Wiith Fibromyalgia, we have to have as big a toolbox. That was my motivation for writing the "Fibro Manual" book.

I wanted people to kind of know every possible option out there that they could consider, talk with their doctor about some things they could try on their own to find that right combination that really helped ease their symptoms because there is not, unfortunately, that one magic bullet that works.

I have people that use Low Dose Naltrexone plus maybe a different type of anti-inflammatory or Low Dose Naltrexone (LDN) plus Gabapentin. It seems like we have to approach the brain from multiple different pathways, multiple angles and push it down into a  more conducive to kind of less pain, less inflammation. ...

This patient population tends to be more sensitive to drugs. Now we starting with one milligram, and I'll have people do that for a month, and then two milligrams for a month and then three milligrams for a month.

I don't always need to get somebody up to that 4.5 milligrams, and I saw that a lot of my folks don't tolerate the 4.5-milligram dose.

It seems to maybe generate more sleep disturbance or more anxiety.

That's the biggest issue I've had with particularly I think in the fibromyalgia population. I know that anxiety is a side effects that can occur with LDN, but I've seen it much more frequently in my patient group then than kind of what the literature reports as far as the frequency.

And I think that maybe has something to do with kind of the underlying fight or flight response over activation that's going on in Fibromyalgia.

I've had a few people that I started at 0.5, and I have some folks that even with 0.5, they get some side effects.

Pain reduction, fatigue reduction, sleep improvement. So what I found is that it really can be helpful to have people, either keep a diary, track their symptoms.

I have one patient that she's at 0.25 milligrams, and when we go up to like 0.3 she notices worsening of symptoms. If she's at 0.2, she doesn't get a benefit. Literally, she is that sensitive to 0.25 that is we've, but we've only been able to fine-tune it to that level because she's so good at tracking her symptoms.

Watch the video for the entire show.

Gastroenterologist Dr Leonard Weinstock - 11th March 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: Today, I'd like to welcome my guest, Dr Leonard Weinstock. He's a gastroenterologist from Missouri. Thank you for joining us today. 

Dr Leonard Weinstock: You’re welcome. 

Linda Elsegood: I think you're going to explain to us about mast cell activation syndrome, and you were telling me that it's quite an epidemic now.

Dr Leonard Weinstock: The damage means a couple of different things. One of them is an epidemic that more people are being recognized with this disorder. I've actually spent a fair amount of time describing it in the chapter that I wrote for the second LDN book. And I think it's actually the first time that this subject has been in a book with a discussion of LDN. , I can tell you that for a fact. It's made an enormous change in my practice. 

Linda Elsegood: So how does somebody know if they have mast cell activation syndrome? What are the symptoms? 

Dr Leonard Weinstock: Well, it's a disorder of poorly controlled, hyperactive mast cells, which are one of the white blood cells in our body that causes symptoms in numerous parts of their body. This cell normally orchestrates good immune function and orchestrates how things heal. A normal blood vessel supply to deal with a burn or trauma event, or a broken bone. These things that come out of the bone marrow normally, and go to the sites where there's inflammation.

And then it basically becomes the conductor of the orchestra to say, okay, you guys do this. You guys do that. And all the immune cells and chemicals behave in the correct manner for the body to heal itself. 

But when the mast cell STEM cell in the bone marrow develops a genetic change, which then becomes permanent every time it activates the little mass cells that come from this and go out into the body, whether it be the gut, the skin, the nose or bladder, the vagina, the prostate, and then take up residence. It will result in a problem also, and the fat of body fat too. that look. It then creates a problem by releasing up to 200 chemicals or more, anytime it wants to, or activates because of a variety of triggers. that could include the food that we eat, the common ones being gluten, dairy, and histamine foods, including tea, coffee, chocolate, sardines, cold cuts including processed meats. So these things can activate mast cells. There are a variety of triggers that occur during a person's life that will activate, and I'll just talk about that in a minute, but I do want to say that this is a congenital disorder.

You inherit some abnormalities to some of the STEM cells in your bone marrow from your mother or father. Often there's a family history in these patients who have diseases and syndromes that nobody's ever been able to explain. So the mother of my patient may have fibromyalgia or chronic migraine. Or be the sickly person in general throughout their whole life going for decades and decades. And what happens is the baby picks up that genetic abnormality, a variety of things that occur in those cells. And then you start having some active symptoms as the baby. And that includes colic.

And this is a condition that's so common, but totally unrecognized by paediatricians that this could be an explanation for the colic and food sensitivity, rashes, eczema, migraine headaches, constipation, sensitive gut. As one patient just told me the other day, they always had a sensitive gut, irritable bowel syndrome. Again, the syndrome. I hate that word because it is something that is quite idiopathic. The doctors don't know what's causing it, but we really need to think a lot harder. 

And patients as young kids had a sensitivity to mosquito bites, they can have a big reaction and develop severe asthma or allergies, which then can go away. It may be at that point that there's some increase in the activity of the mast cells, STEM cells for some reason. But when a person reaches puberty, often things get worse with hormonal triggers. And these are the people who complain of severe menstrual periods, taking them out of school, severe cramps, severe bleeding. And others reported use of Benadryl or diphenhydramine, or suppositories to reduce this, with marked improvement in activation syndrome patients. And then during the teenage years, there's a lot of stress. Stress activates mast cell activation syndrome. Maybe that's a contributing factor to acne as a teen. Then as we go into adulthood, there are a lot of consequences of stress, the inflammatory stress of pregnancy, which can activate Mass Cell activation syndrome. Other conditions such as reaction to our immune changes to vaccines can play a role.

I have patients who are remarkably sensitive to heat. One woman goes out in the hot temperature of Missouri, and her temperature goes to 103, and her face gets red and puffy and swollen. She literally rolled into my exam room in a wheelchair and with the use of low dose naltrexone and other simple medications walked in the next time she came in.

And that was really a hard read but a gratifying situation for me to say,  she's made significant improvements. I do utilize LDN, a number of my associates, who are in different parts of the country use LDN as one of the first steps in treating this condition. The condition is normally treated by the use of antihistamines. You want to also use vitamins C and D, which stabilize the mast cell. It's important to cover your levels and try to get up to a high level, which is therefore anti-inflammatory, you know, so you want to use the sustained-release form of vitamin C.

There's less acidity by taking that. And also you don't get dips in your blood levels. And so the pain level is also important. The level of low dose naltrexone. I generally start with one new program and work my way up in terms of diagnosing somebody with this disorder, they have to have two or more classic mast cell activation symptoms.

And that could be simply irritable bowel syndrome. And stuffy nose. I have patients who have had limited symptoms like that, and they reverse and turn around just with simple over the counter therapy, LDN. But those who are more effective, and there are plenty of my patients in that regard, do well with LDN.

And, uh, if you buy the book, in my chapter you will see my outcomes data on patients who are treated with LDN. And it's dramatic in some patients, especially some things like brain fog, which is so common. People can remember words or abilities to work. Some cells are really destroyed, another neuropsychiatric problem with mast cell disease. There's going to be so many things that affect the body, including the brain. I'll go into that in a bit and tell you about a few cases, but I do want to finalize things about the diagnosis. We do like to get the chemical analysis, the mediator tests that help prove that somebody has mast cell activation syndrome.

So that would include their heparin level, which is unfortunately only available in some labs to be done in the ideal ultra sensitive way. That would be 60%, but the fact is, in the United States, there's only one lab that I know of that does this correctly. And in Germany a lab that does it correctly as well. 

 

 The histamine level is positive, and about 15% to 20% tryptase level, which is widely misunderstood by allergists who deal with this condition or other doctors who think they're dealing with AMCAS correctly, and they say, Oh, the tryptase is normal. That excludes it. Well, the fact is they're wrong. 85% of AMCAS patients will have normal tryptase levels. And there are three urine tests that can be run. Some people also believe that if you repeat the tryptase level during an attack, a significant elevation could be significant. The data to support that is not in the literature and this is a problem because following this guideline could result in getting underdiagnosed and therefore, undertreated. 

 

So I am investigating a number of conditions that are associated with Mass Cell activation syndrome. And just recently found that 40% of my patients add restless leg syndrome, 60% had ringing of the ears, and. 30% had small intestinal bacterial overgrowth. Bloating is a very common symptom of AMCAS, and therefore bloating especially immediately spontaneously is likely due to the effect of the mast cell, chemicals as opposed to small intestinal bacterial overgrowth or SIBO. This is an epidemic if you will. The range and estimates are 1% for the United States, and 17% of the German population has been estimated to have mast cell activation syndrome. So something's going on with our genes that allow these changes to occur early in life. Whether it's a methylation problem or there's radiation, I don't know.

But I think all these things need to be explored. I have patients who got a lot worse when they moved into a new home, and the entire block had radon  in their basements and they all had to get fixed. And radon is a naturally occurring nuclear material. So I think a lot of work needs to be done. We need to live on a healthier planet. And  God willing that will take place and pray for and do whatever you can to help. Thank you, Linda. 

Linda Elsegood: Oh, thank you. Wow. That's a lot of information there. So if somebody is concerned thinking they have mast cell activation syndrome. How easy is it to find a knowledgeable doctor who would know about these tests you were talking about? 

Dr Leonard Weinstock: The answer is very difficult. Now, you introduced me to a doctor in England, who's interested in expanding her functional medicine. I'll be talking to her in a few hours. This has got to start in medical school because otherwise, this is going to take 20, 30 years and think about all the suffering that goes on. There's a minority of people. We have a study group that has 160 doctors. It's grown from 30 doctors in a matter of two years to 160 doctors who are actively engaged with studying AMCAS, sharing difficult cases, getting ideas, and it's been a wealth of information. 

It takes doctors a very long time to learn anything new. Only if there's a drug that comes out, which is then FDA approved or approved by the EU for a particular disease because it actually has the potential of getting out there either through articles or believe it or not, drug representatives who are then able to come in, advertise the drug, advertise the disease or syndrome. But even that takes a long time. And since 2015, we have two drugs that were FDA approved. And many of the GI doctors and primary care doctors don't know about it or understand it. And again, it wasn't taught in medical school, so it wasn't taught in your residency. And many doctors are afraid to learn anything new just because they're overwhelmed by other things, and it's a problem. 

Linda Elsegood: As you can perhaps remember when you suggested I have had a SIBO test, how impossible it was for me to try and organize that. And I was thinking while you were talking, I really wouldn't know in England how we would go about having these tests. But if you're going to be talking to this doctor later, maybe she will take it on board and learn about it. 

Dr Leonard Weinstock: Theoretically the allergists know about it. It limits your allergist theoretically in the UK or elsewhere to know about mast cell activation syndrome. One of the problems in politics. Once you make the diagnosis, then everybody, their GP wants you to manage the patient. Now, these patients can have 48 different symptoms and in 11 different parts of the body and there is a lot to handle. They take more time once you tell the patient, okay, I believe everything you say, and I believe that everything is due to one little cell in your body.

Then, the patient is validated; finally, they don't feel crazy. And honestly, that's a big thing. The doctor who diagnosed this, winds up being the treating physician and spending a lot of time, emails, phone calls, et cetera. And so a lot of the doctors who are on our Internet study group, or actually what we call private or concierge type doctors who can spend an hour, hour and a half with the patient and an insurance model that works, especially your model that you have in the United Kingdom. That's hard to do, if not impossible. 

Linda Elsegood: Well it wouldn’t fit in 10 minutes, would it? 

Dr Leonard Weinstock: No. That's the problem. 

Linda Elsegood: If you manage to find somebody who would diagnose you, give you the tests, what is the treatment? I know you said about LDN and cutting out all the things in your body, in your diet.

Dr Leonard Weinstock:  I've got something online that they can look at, that goes to educate, diagnosis, basic treatment by the basic steps. One, two, three, four, diet. Symptoms specifically that many of those are prescriptions, but not all. So on my website, G I go after diets, a GI doc, They can type in the search area mast cell and see Mary’s approach, see some of the PowerPoints that are given. For me, as a gastroenterologist, this has been nothing but a game-changer. A game-changer because it helps me diagnose all the difficult patients that had been dumped. The routine gastroenterologists told them that they're crazy, or just given up and they wind up seeing three or four more and don't get answers. They get colonoscopy twice or three times and biopsies, but you're not going to see the cells. And if you don't test their blood in this special way, you'll never get the answer.

 

RESTART HERE So for me, this is a real market for both than out of that remarkable and makes me feel good because I can take the most dramatic case, which was dope, which was yesterday, where I have a patient that's severely affected, very severely affected, but she's getting better with aggressive medical therapy.

Mmm. But then I decided to ask her about her family history. And it wasn't quite clear. Yeah. Her mother was affected by, uh, some problems. Um, and I said, well, what about your children's to the big problem? And she became weepy, and she said, well, my daughter's had psychological problems all over life. And then she was 16.

She blamed me for this and that, and moved out of my house at 16 and cut me off from her life. Wound up moving in with the grandmother. And I said this could easily be neuropsychiatric disorder related to AMCAS. And if you Google, um, AMCAS and neuropsychiatric disease, you'll come up with dr and dr moulder and, um, report talking about all the disorders, including depression, anxiety, panic attacks.

Or even schizophrenia, things. They are caused by chemicals and not by nature, but nature, not by nurture issues. And I said, you know, um, to, um, Mr G, I said, you know, you gotta take this paper to your daughter, you've got to take this, uh, questionnaire. And I believe the questionnaire is on my website, the M C M R S questionnaire.

And take that and give it to your daughter and say, you know, it's not me. It's my genes that you received, and this could get better with simple medication. And I told her about a 17-year-old woman that I saw. Who has panic attacks and their eyes would glaze over, and she could be trusted panic attacks.

She had to stay home from high school for a year to try to get herself in line. The mom saw me he is diagnosed with, and she said as pleaded could see her daughter who had panic attacks cause she read about panic attack in the literature I gave her. And I saw her very nice person and not a lot of systemic symptoms that she would admit to, but she had this, uh, severe nature of, um, being nervous.

And, uh, so I gave her naltrexone. I gave her anti-histamines. I had her come back for a follow-up. Her blood tests were actually negative for AMCAS, but that doesn't rule it out. Good. 25 to 50% of people are going to have negative blood tests. And she came back in, and she was a new young lady. I mean, she was confident.

She was smiling. I mean, it was amazing. And, uh, she was so happy, so thrilled she was going back to school and going into college the next year. And things went great until college when she had a terrible diet, couldn't keep, uh, gluten-free. And, uh, so she came in, uh, at Christmas time and we talked about how she needed to modify our diets and tricks since that was the main cause.

For her slipping. So we had to look for triggers. But I mean, that's one of the greatest feeling things that I've done in 35 years of being a physician. Hmm. 

Linda Elsegood: That's a great story. You did actually have a request for people. Um, if they had a terminal pain, would you like to, to tell us who you would like to contact you.

Dr Leonard Weinstock: Yes. Um, so I'm doing a research project, um, trying to identify people with chronic abdominal pain who have had cat scans of their abdomen and been diagnosed with one of three conditions, mesenteric and they kill itis inflammation of the fed. Blue roasting, which is some information and, and contraction of the mesentery of the abdomen to the connective tissue that holds everything in place or the most serious, uh.

Uh, of the three related conditions, namely, um, rec retract tile, Mez introitus where everything moves and pulls in and fibrosis and scars down. So I'm looking for patients who have that, uh, diagnosed by x-ray and have been treated with the LDN for, you know, a variety of things. And, and that found and found relief.

Of their, uh, abdominal pain. So if you got that, uh, you can write to me at LW, at GI doctor.net similar to my website, LW, my initials at GI doc, T O R. dot net. That's specifically looking for patients, uh, who have had benefit with LDN for their abdominal pain and had one of those three conditions. Mesentery connect your riotous sclerosing, uh, medicine traits, and we'll track Tao lets him try this.

And this is basically something that, um, is per survey as opposed to coming to Missouri and seeing me. It's really for a survey. And then, um. Uh, you know, I think that some of these patients are going to be like, two of the patients that I've got in our practice that, um, are related to mast cell activation syndrome.

Linda Elsegood: Well, you're absolutely fine. You'll just like 30 seconds off the end of this show. So well done you, and thank you very much for educating us today, and I do hope people will contact you. 

Dr Leonard Weinstock: My pleasure. Have a good day. 

Linda Elsegood: Thank you. This show is sponsored by Mark drugs who specialize in the custom compounding of medications, assuring that the client gets the proper prescriptions for their unique needs and conditions.

They work with practitioners integrating knowledge and treatment of experts to create comprehensive health plans. Visit Mark drugs.com or call Roselle (630) 529-3400 field (847) 419-9898

any questions or comments you may have. Please email us at Contact@ldnresearchtrust.org. 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.

Sabrina Knowles LDN Story (low dose naltrexone) from LDN Research Trust on Vimeo.

Hi, my name is Sabrina Noles. I'm 44 years old. I live in the beautiful Bahamas, and I have a husband and two kids. I was healthy for years. I mean, I was living the fast life. My career was taking off. I was in IT. I was working. I was travelling for the company I was working for, the bank I was working for, and I was very much into my career, and everything was going really well.

I got married when I was 21 years old, and things are still going really well and then I would say a scale of one to 10, my quality of life at that point was probably a 10. Now, I would say if I go back to when I was a child with asthma and the complications from being a bit overweight or whatever, I would say it was, I was more like a seven, you know, that's six, seven.

But at that point once I lost that weight and weight later, teens and I just stayed there and I, you know, focused on my career. I focused on my college.  I was really booming and it was going really good, you know, so I definitely was a ten then, and that went on for a good few years, I guess.

I got pregnant.  I was three years married, and then I got pregnant.  Four years on and I was still feeling really good. You know, things are going well. And then just, just one day.  I actually started to lose the baby, and I had to go on bed rest because I was spotting and stuff like that.

So I had to go on bed rest, and I did not know that was the start of a whole lot of things coming for me. So I would say for most of the pregnancy I was on bed rest. And then when I was two months pregnant then and  I stayed on off and on for the majority of it. Then it got diagnosed with this and that, and it was a struggle in the pregnancy.

The entire pregnancy was just a real struggle and then I actually lost the use of my hands when I was about seven months pregnant. In fact, we had a baby shower. You know, it was all a surprise. It was really rough. But I couldn't open the gifts. You know, everybody sits down and opens the gifts and my husband and I just sit next to me and actually open the gifts for me because I literally could only put my hands in my lap. I was able to use my hands minimally, but to do pretty much intricate things or just things. I was in so much pain, and they were always so swollen. And you know. Then, I didn't know that that was definitely a start or something bigger. And so I went on, my son came prematurely actually.

He ended up in the hospital and there was a rough time too with that whole situation. So it when he actually couldn't take my breast milk, and that's what was making him sick. And he found that out when he was about seven weeks.. And we had to just cease him breastfeeding. And once we did that, his condition cleared up right away.

You know, you should go for your six-week visit. And I ran for that, and I noticed that the shoulder was painful. And so I rang my doctor had told me prior to that, she was like, Oh, your hands are going to get back to normal after the pregnancy. And I said, okay, great. Glad to hear that. And everything is going to get and that was great to hear that. But no, this is now. Seven, eight weeks later, and my hands and still a mess, and even worse than they were at that point when they started. And then my shoulders now a mess, and she's now saying, Hey, my doctor's saying, Hey, you probably need to go see your rheumatologist.

I rang to see a rheumatologist, a local rheumatologist here, and I just told him what was happening with my hands and my shoulder, and  he said, okay. He just rolled up with some steroids, and he said, take them. And I'm like, what?  what am I taking them for? And he said, well, just take them.

And he never gave me any explanation, and I'm kind of stubborn. So I knew steroids weren't good for you, so I just decided not to take them. I ain't really, honestly never did. I got prescribed them many times after that. But my stomach felt, decided not to go back to see him, and I would just wait this out because I'm going to be fine.

So I tried, you know, I ran to the gym, and I was working out thinking that if I lost the weight, which I was told by the doctors who want you to lose the weight, you're gonna feel better. And so I said, okay, sure. So I, you know, watched what I ate and I worked out and. My hands were far worse at this point.

And then the shoulder went and then it was like, okay, now we're, we're, I maybe I damaged this in the gym, you know, and that's what I'm thinking. And so I, at that stage,  I finally, I needed help with my house cause I needed to, I went into, my son was about a year old, cause I didn't want to do anything until I knew he was able to at least walk around. So I went to see another doctor who said, Hey, you have Quervain's severe disease. So I said, okay. So he said, you have to get an operation on both hands. So I said, okay. You know, but I also have a shoulder issue, and then I have a left knee issue. Yeah. But they're not related at all.

You know, you have to get the surgery in your hands in order to feel better. So I had to go and, I think I took about two months before I actually went to go to the surgery with him. And I remember I was laying there and they cut up on both hands and then did whatever they do. And I was definitely without using my hands for about four weeks after that.

So I was, everything had to be done for me at that, at that point and it's good. I have a pretty good husband cause he had a whole lot during this whole process. So now I'm 25 years old and I, you know, I had my first child, my hands are a mess, and I'm healing with these hands and I'm wondering what's going on with my body because it's not just my hands anymore.

As I said, it's both shoulders and now a knee, and I'm being told by a doctor, this is all in your head. All of this is in your head. Okay. So it's all in my head. So I said I even, at one point I got prescribed antidepressants because it's all in my head. And so that didn't go well. 

So the quality of life is going down rapidly here, you know?

I'm sorry, I went back to work after my son was born.  Then I, as I said, I had gotten the surgery not too long after, and then I was like, you know, something isn't right, and I'm not feeling right, and maybe it's the stress of going back to work. So I ended up quitting my job and staying home with my son, and I said, okay, for one year, because honestly I like to work.

That's just how I am. Plus, you know, he was starting to go to a preschool, and I was like, you know what, let me just go back to work and. So I went back to work and the pain now in my lower back so bad. I cannot forget those pains because that stayed with me for, you know, I'll get to that, but many years after that so I went in to see another specialist locally, and

she said to me, Hey, you have fibromyalgia. So I said, okay, what does that, well, at that point, I think it was 2003, and they didn't seem to know much about fibromyalgia at that point. So, she was like, well, you know. Right. And I think that was one of the first times I got prescribed the anti antidepressants because it was a treatment for fibromyalgia.

And then she said, well, if it's your low back and your neck pain, it must not be related to the fibromyalgia. That makes no sense. She said I think it's because you have large breasts. And I did. So I was like, okay. She said I think you need to get a breast reduction. So I said at that point, it was so much pain, I was like, whatever it takes, let's just do it. I must say, my mother, tried to talk me out of it. Kind of wish I listened to her, but I was in so much pain, especially in my neck. I went,  whatever it takes. And I went under the knife again, and I got a breast reduction done. And I say a few months later. I may have had a slight bit of relief in my neck.Probably slight. I'm not sure this remained the same. She did tell me to, my shoulders should clear up too, because of the bra strap. Straight in the shoulders. I was like, okay. And I mean they did do some quite a bit, but still, you know just a slight change in my neck. 

So then my husband and I, we went to New York, and we went to the New York Centre for joint diseases.

I have been to quite a number of places other than doctors locally. And they, um. They couldn't come up with anything really. You know, it was kind of like a dead end again, I hit a lot of dead ends, I think after that, that was probably 2005. Um, and then I, uh, I would say, um, I'm just trying to remember, I said, I saw another specialist, thyroid specialist as well.

Nothing was wrong with that, right? Then, the doctor who did suggest I get a breast reduction and said that there is some issue with my thyroid, but it's minor. Nothing to worry about. So that's why I ended up pursuing a thyroid specialist here who then told me, no, nothing's wrong. You know, everything's fine.

So I said, okay, now this time, every joint in my body is just feel like it's collapsing. The pain is just all through my body. My muscles are twitching. Yeah, my muscles were burning. You touch my skin. My muscle was burned. It was just intense. Um, I had, uh, I had so many symptoms. It was from one thing to the next..

It was a lot of stomach issues, a lot of dry skin, I could not sleep. I did not sleep for about 17 years properly. I will never forget that and off all things, and to be honest with you, I don't think anyone who knew me knew who I was going through because every day I had to be a normal person because like a lot of doctors told me it was all in my head.

So I wanted to believe that and just be normal like everybody else. So I just lived in all the lights. 

I did get some relief when I was pregnant with my son too, until I came across the best thing ever, um, was in 2008, I went to Cuba for treatment, and I did ozone therapy, and I did, um, you know, a lot of rehabs and.

Uh, different things like that. And I must say, I think where I took myself out of a stressful situation, it's just home. And as well as we are just opening up our first business a couple of years prior to that, um, I think maybe I was like, okay, maybe that's what it is. It's just a bunch of stress.

So I had relief for about eight months. 

It came right back, and when it came back, it came back worse than ever. And I was like, wow, I really thought i was getting somewhere, but it came back and it, it's terrible, and at that point, I started to want to give up. I was like, forget it I'll just suffer.

So, uh, but I didn't think it could get any worse, but that was another lie I was telling myself, besides, it's all in my head. Um, in 2011 and of course, I'm, I'm missing out a whole lot of, um, doctors I in between all of that. Besides fibromyalgia, I was told I had thyroiditis. I had, Myasthenia gravis I was told, um, ankylosing spondylitis was the, when I was diagnosed actually from 2003 in my, and I was told you know, ten years, I'll be in a wheelchair, you know, and that I, that was, yeah, so I would've been in 2012 I guess I would have been in that wheelchair.

 

But anyway, and So, and all that time, I'm being diagnosed with a whole lot of different things., I IBS, uh, chronic fatigue. Well, of course, I come that came with another doctor who I had already been diagnosed well two years before that. Um, and all of these things, Oh, um, arthritis. When I'm getting to that, I, I'm sitting there, we're watching this program called

The street diagnosis. I came, I know it was this, a doctor who had a patient had exactly what was going on with me. That's how it just seemed. And so, you know, we got the doctor's information who helped her and really liked, she was in Texas, and we were like, yo, we're going to Texas. And you better believe in a few months we were in Texas seeing that doctor, and when we went there she said you have PCOS. And she showed me. And it was really like a podcast busier, as I said before on the answer again. So, Oh, I was planning, and I was prediabetic. And that is where, um, she said that, well, these pains and joint issues and problems, they don't seem to be related to the PCOS, but let's go see a specialist.

And. I'm between hunting specialists. I was told like, polyarthritis but, um, I was like, yeah, it's just another label being put on me. I think I was getting used at that point, but I didn't mind treating this PCOS. I saw you've been on glucophaseh and, um, I think it was something else. I don't remember it was okay in some ways, um, but at this point, you know, um, brain fog and, Oh, I will never forget this.

Music used to play in my head at a very loud tune all day, every day until he went to bed. And, and like I said, sleep was not good. So I woke up in the morning and the music was loud and loud, and that went on for years. That was one of the worst symptoms ever. And I, uh. I would say at this point this is now 2011, quality of life is really poor.

I am, I thought it couldn't get any worse, but if I were to give it a number out of the worst, I would say I was probably about a four at that point. Trust me it got to a one though, and um after I saw the doctor in Texas and they did what she told me to do and things, so it wasn't getting any better. I definitely, I'd given up then, and I justt wrote it off for years after that. I said I didn't even talk about it. I just like, whatever.   I think what really hit me when I felt like, you know, uh, I'd say about maybe 2015 I said, you know what? I think I’m going to die. And that's, that's when I started to realize I gotta do something cause I have two kids and I'm feeling like I'm gonna die, you know.

So I said, uh, you know what? Let me start looking into this again. I, I'm forgetting the whole giving up  thing. I'm going to start looking into this again. I always, I'm subscribed to a lot of the functional medicine doctors, and I get their emails, and sometimes I'll read them and sometimes i won't.

And dr Hyman was definitely one of the ones that I, um, you know, loved his, uh, everything he had to say, you know, so I one day, an email popped up, and it was, uh. It was related to a series he came out with. I thought the series was so different, cause I've never seen any, any of them, how a series comes on.

So I was like, you know what, let me read about it. So I read about what's called the thyroid secret. And so, of course, the thyroid is almost always buzzing around me with my condition, even though it was all in my head. Um, so I, I always, I always felt it was related to my thyroid. I'm; still, I'm still. I know that it is related to my thyroid, it to some degree.

Um, but as you know, with autoimmune diseases, once one thing starts, another one and then another one. So anyway, um, I, I decided to watch this series. Uh, initially I didn't, I was like, I don't know. Watch, I'm wasting my time. It's just another waste of time. But then I, then I remembered, I said, you remember you didn't want to give up, so you've got to do everything it takes.

So I said, you know, I never saw it was done by dr Isabella Wentz. And I watched that first series, and I couldn't believe what I was watching. I was like, this is another world to me. I didn't know who that, uh, you know, that this type of help and these solutions are out there. I would say I saw, I learned about, um, AIP, which is the, I still follow the AIP diet today.

I, well, I, I bought it. Some things blocking are important things. Um, and then I learned about LDN, and I was like, I, you know, as she spoke about LDN,  It can be. I've seen all these doctors. No one has ever said those three letters to me. No one has ever said that. So I just, so I got more interested. I, and I read, I listened to, I think it was 12 shows in the series.

So I, and I, I bought it, and I listened to the can, and I even got the, um, transcript. And I read that I ain't got so into it. And I was like. You know the, I think this was like late 2015 or early 2016 now coming in, I was like, you know what? I am going to do everything she says and that, and I didn't know how I was going to get my hands on LDN.

I'll be honest. 

So in 2016 late 2016 right? That's when they started to make all these changes, and then it was unbelievable. I know. Amazing. I started that AIP diet is very strict. I, along with the LDN and when I saw the LDN, I, um, I got, I got like, I'm sick and I was like, what am I doing wrong? And then I went and saw him do a little research and I, I was taking too much of it.

So I did, I had to pull back a lot. I started to take like just 0.25. Then I, uh, and, and along, as I said, I was doing the AIP then I was doing, being very soon, I wasn't taking any supplements. I was doing everything extremely slowly. And they realized that I had, I just had a sensitive, very sensitive body.

All of that exposed me to what was really going on. And I could almost say overnight. I just became a brand new person. I hit my 10 then with feeling my best and that. I have started in, uh, 2017, early 2017. That's when I started to change between the LDN and the AIP diet and, and that I, I, I, I wouldn't say I'm a ten still.

I'm like nine now. Cause you know, a couple of little things are showing up, and I'm trying to figure out, okay, how to deal with those little things. But that's fine. That's fine. But, um, since 2017 to today, 2020,  I am doing a whole lot better. A lot of, I have even forgotten so many symptoms that I used to write down symptoms every so often just to remember.

And I had to literally go back and read some of them just to be able to recall them. Um, I mean, I'm running now. I do, uh, uh, well, I didn't do a marathon, but I was a part of a relay team for a marathon recently. And I, I ran one of the legs, one of the longest legs. I do, um. I always placed in the Run's too, I want on Saturday and hoping to place it.

And it's amazing how the change in me has just come about from just making . I'm not going to say the diet is easy, so let me say that. The diet wasn't easy, but I believe the diet was definitely, me helping the LDN to work, and the LDN was also just helping overall. Um, everything I could think of has pretty much just cleared out.

I am like, like I said, a brand new person, you know, and I, I, I can't believe how well I've done, cause Just, again, the diet is very, very hard, It's just really hard to public pill. But I had to learn how to use it pretty much. And I've been on it for the past three years, and I'm not planning to come off it at any time.

So when I, um, well for me, I never thought it would be possible to come from where I was to where I am now. I had an unbelievable change. I, if that can happen to me. And that can happen to anyone.  Oh, well over the past three years, well, even before I started LDN, I read a whole lot, and I couldn't believe what they were saying.

I wasn't a believer because how could this one pill do so many things? So, but if I can sit here and tell you what I went through to, to get to the point I'm at. With, just the LDN and, and like I said, the dye, but I know I've read a whole lot of stars where people didn't change anything, and that's doing the LDN, and they're fine.

They're fine. Then I, I'm definitely a believer that LDN can help in so many situations. So many people have approached me, since I had changed my life and.  a lot of them come to me, and they noticed the weight loss initially cause I lost about 70 pounds now, so that I know when I tell them about the conditions I had and all that very, they're even more, uh, amazed by it.

Um, and then I tell them about LDN and then they're like, okay. Like, you know, it's hard for them to really believe . You know, I'm, I'm sitting here, and I'm telling you that this is real and this is, um, possible. And so I, um, always make that a part of my,  story to, to people,  if this, if we can, as a country be able to accept something like this very cheap drug to, come into this country to help them.

Many, many, many social the sicknesses we have in this country, and we have a whole lot of challenges is no joke about that. You know, um, we can see so many changes. Uh, it, it would be great if we can get, um, a team of people who would beready to back what LDN is able to do. Um, as I said, I can talk about it and tell him blue in the face.

The problem here is getting access to it. I have to get mine out of the US, and brought in. Nobody here has said, I've tried to find it here. In fact, um, I probably have a pharmacy there to really help to try to get it there. But I think because of the compounding side of it, it's where it's a challenge for them.

I'm not sure. I'm not, you know, uh, I don't know much about pharmacies, but, but if we can get away to get it set up here and for doctors to jump on and learn about this, and it's a lot of if I can find the literature out there to show that this, this thing is real, and this works, I'm certain they can also see it for themselves.

Uh, it's side effect free. It's, it's not like you're taking a chance on a drug that's gonna be a concern for your patient. You know, it's almost side effect free. I mean, there's, I, I, I'm one of those who had the vivid dreams. That's fine. Who, who cares? I mean, I've had,  when I go up in dose, I have like a slight headache, but that goes away, and it's very small things compared to the suffering I had prior to that. And it's for people who are worse than me. I would sit here and say, Sabrina What's worse than what you felt? But I know there are people who are worse than me, you know? Um. Then I would say that it is something that we really have to consider using in this country for so many.

I know it's not just for autoimmune diseases. Cancer and a whole lot of things it helps. So if we could get on board, that would be an amazing thing for us. You know, we could see a lot of things change in this country.

Pharmacist Gene Gresh - 20th May 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Gene Gresh has been a pharmacist for 20 years and works with his son who is also a pharmacist in Vernon, Connecticut.

In this presentation Gene Gresh discusses how when he started 20 years ago Low Dose Naltrexone was compounded but there was little known about it until many years later when scientific studies started to be conducted.  He set out himself to really study LDN beyond the anecdotal evidence he knew to exist through his own customers.      

In his survey of over 600 patients they got a lot of good information and one of the key points that they found was that most of the patients that discontinued LDN did so because they didn't ask questions. They experienced side effects or they didn't see the results they wanted in the time-frame they wanted so they stopped it without any kind of information. With some of these conditions, it's so important for them to get the good information which enables them to persist with it and deal with unwanted effects. 

Dr Phil Boyle - Women's Health and Low Dose Naltrexone Part 2 - 26 Feb 2020 from LDN Research Trust on Vimeo.

Dr Yusuf Saleeby - 19th Feb 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Dr Yusuf Saleeby shares his Low Dose Naltrexone (LDN) experience on the LDN Radio Show with Linda Elsegood.

Dr. Saleeby is a 1991 graduate with a medical degree from the Medical College of Georgia in Augusta Georgia. Upon completion of post-graduate training at East Carolina University School of Medicine in Greenville, North Carolina, he had a two decade career in Emergency Medicine serving Emergency Departments in NC, SC and GA. He held leadership positions as medical director in his career. In addition, he pursued training in functional and age-management medicine since 1998. 

Currently, he practices holistic integrative and functional medicine in North & South Carolina at Carolina Holistic Medicine. From 2000 until 2006 he was appointed as co-medical director of the Emergency Department at Liberty Regional Medical Center, Hinesville, GA. In 2007 he was promoted to medical director of the Emergency Department at Marlboro Park Hospital in Bennettsville, SC until 2010.

With over 400 patients being treated in his practice currently, he has around 60 currently on Low Dose Naltrexone (LDN). In this interview Dr Yusuf Saleeby explains his interest in Chronic Lyme Disease and how LDN can help to combat the disease.

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

Dr Julia Piper - 12th Feb 2020 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.

Linda Elsegood: I'd like to introduce my guest today, Dr Julia Piper from Private GP Services in Leicester in the UK. Thanks for joining me today, Julia. 

Julia Piper: Oh, it's a pleasure. Lovely to speak with you Linda and all your listeners. 

Linda Elsegood: Thank you. First of all, let's get to know you, what made you decide to become a doctor. 

Julia Piper: Oh gosh, Linda, that was years ago. I think it was only six years old, and I always wanted to become a doctor.  I remember my cousin was a doctor and I was completely obsessed with how wonderful she was. To do this and want to do it. And eventually, she became a haematologist.

I just never wanted to do anything else. My father said, why didn't you become an engineer? And I could, I just couldn't relate to anything else and that was it really. I mean, people tried to dissuade me over the years for a number of reasons, I guess, you know, to do with the number of hours you're going to have to work, but it didn't quite work, you know, it's like, I'm on my right path, let's put it that way. 

Linda Elsegood: Oh, wow. So where did you study?

Julia Piper: Nottingham University. I chose that because it was very beautiful and green, and I liked being out of doors.  I could have gone to London I guess because we lived in Kent at the time but, I chose Nottingham, and it had quite a different course. You were assessed by continual assessments so that you had exams at the end of every term.

You became a bachelor of Medical Science, so you learned how to be a scientist as well and apart from that it was very similar to other courses, but it was just this, that didn't have to sort of leaving everything to the finals. After two years you really sort of kept on top of things as you went through  

Linda Elsegood: okay. So when you qualified, what path did you take then? 

Julia Piper: Well, I always wanted to be a GP because I loved being out in the community with families and so on. And so I went into vocational training, and I did my own vocational training course, which, in those days, we were able to choose different specialities.

And we did that for two years. And then we had to do a year in general practice. And then I went into a GP practice in Yorkshire where I lived at the time and moved down to Hertfordshire in general practice there and now, and then moved up to Leicestershire, which is where I am at the moment. So I had quite a lot of experience in the NHS, you know, before I, I actually then eventually moved into the private sector.

I mean, it wasn't really planned this move into the private sector only that  I guess I wanted a little bit more time with people and just to have a morning a week where people could just ring me up and say, can I have half an hour? I need more time. Because it was so, you were so stretched for time in the NHS, and so that was meant to be anything else but of, you know, we all know their life changes and evolves, doesn't it?

It changes, and they both send. Eventually, as I say, I went into the private sector and started to see a few patients privately. Interestingly over the years that changed because, I suppose with the regulatory framework changing with the care quality commission, and so on, we had to professionalize our systems and we were the first in the UK to be registered with the care quality commission.

And eventually, I had to make a decision to leave the NHS and some of it, a lot of the locum work I was doing at the time and move totally into the private sector. So I've been doing this now for 25 years, so it's a long time, isn't it? 

Linda Elsegood: Very long time, but it must be very frustrating being a doctor if you have a patient that has a chronic condition, how do you possibly understand all the symptoms and everything they are going through in 10 minutes. 

Julia Piper: Well, absolutely. It's interesting. I think that the way we were trained at medical school and the way doctors, in general, have been trained, up until recently things are beginning to move in different directions.

Now maybe.  but I think we would, we were trained very much to give a label to a disease that that disease has certain evidence-based treatments with drugs or surgery. But what I found as I've moved through life, in particular as we had illnesses in our own family and also with my son's illness of schizophrenia, I have a son who’s has been in incredibly poorly and you know, I, I began to seek other routes to understand what I could do because I felt so frustrated it was like he would give me a prescription on your pad when it became a doctor, and you had to write on it, you know what the medication was or refer to a specialist or to surgery and it seems like we didn't really, we weren’t taught to do anything else. But as I moved into the private sector and I had a bit more time, I think I felt quite guilty that I actually thought I have people coming to see me who are really poorly and there must be more than this. And I think at a very young stage, especially with my sister dying from ovarian cancer, I started to look into alternative routes to heal people and to help to really understand, you know, why both the Chinese chose acupuncture?

I mean. There were clever. They had no science in those days, but they had observed and you had thousands of years of observation and knowledge that, you know, we didn't seem to be taking any notice of. So I trained in acupuncture, I trained in hypnotherapy. And moreover the last few years, I've been training into functional or biological systems medicine.

So that was the root really. It was just frustration. You know that we stopped too soon or we seem to diagnose a disease when it got there, but we didn't seem to do anything to help reduce the risk of developing it. And we didn't seem to do enough when we had made that diagnosis, we didn't have enough tools.

Linda Elsegood: And of course it would seem to me that doctors treat the symptoms rather than the cause, to find the underlying problem, and then the symptoms go away, but you don't actually need to then treat the symptoms. 

Julia Piper: I see. Yes, that's right. I mean, that's really the way we're trained. I think that was my biggest frustration that and I can understand that, you know, once we’ve got a diagnosis, but sometimes medications can be incredibly helpful in the right place but they're not necessarily a panacea, sometimes say, Oh, but you know, we need to have these the tools and understanding this as a body so that we can recognize the causes and the pathway to illness. Because if we don't understand that we a) can’t prevent problems. But b), you know, it's more difficult to turn around some of the symptoms that we see, as you say at the root cause. I agree with you on that one completely.

Linda Elsegood: So how long ago was it when you first heard about LDN? 

Julia Piper: Mmm. Interesting. Low Dose Naltrexone, I mean,  I knew about it for many years actually with those patients that came to see me when I was working in the NHS who were taking Low Dose Naltrexone. So at that time, it wasn't on our list of things that we should be doing.

And so I, probably because I was too busy, you know, seeing so many patients with the NHS, I didn't really look into that further. But I came across it again about five or six years ago. Again, when looking at patients who are chronically ill, studying to a much deeper level with functional medicine and biological systems medicine and not trying to understand what was happening with the immune system because it seemed to me, that it became apparent anyway way to me, but actually much many of our symptoms in our bodies, be it headaches or tummy aches or you know, all the root of chronic illnesses such as MS, Parkinson's disease, where are due to inflammation. And that is so closely tied to the immune system. And that there’s a disruption in our immune system. When I think of the immune system these days, I suppose, I think of it as rather than an army who goes and tries to sort of kill the baddies. I tried to think of it as an intelligence service like MI5? It's very complex, actually working out who is for us and who is against us. Because actually, you know, under different circumstances, you know, that those situations can be, can co-exist right? So I think that's, in terms of, as I began to understand the immune system and look at, say for example, for those people who are au fait with the immune system, the TH1 & the TH2 parts of the immune system and how they become imbalanced, for many reasons and often associated with underlying conditions, depending on how unbalanced they are, you know, it became much easier to understand why a medication such as Low Dose Naltrexone would work and I think, you know, my first foray into that was with people who had autoimmune conditions and whose cellular immunity was not working as well as it might do. And who, probably alongside, developed chronic stealth infection but actually LDN was a very good tool to be able to correct some of the imbalances that had developed.

and as we know there are many, many autoimmune conditions. And as we develop the how-to, how to phrase it, sort of imbalances in the immune system or in the intelligence network that, you know, we need, we need more tools to be able to correct those. But also remembering that as we develop a problem within the immune system, that that really runs alongside some of these chronic stealth infections that then are allowed to develop.

So as I say, what I found with low dose naltrexone, it's a great adjunct. I mean, sometimes it's very good on its own but I find that on its own, the body becomes so complex that no one thing normally is enough to, to get us better. You know, if I've introduced Low Dose Naltrexone, it's on the background of someone that understands the importance of the gut and understands the importance of, you know, having a great diet that is tailor-made to suit them. We all have different idiosyncrasies with our diet, but really we've got to be able to work with our lifestyles and our relationships, our exercise patterns, you know, everything really, as well as having these tools that can help to modulate the immune system and give us that extra bit of support at a much deeper level.

Linda Elsegood: Mmm. Yes. What have patient outcomes been? Could you quote us any case studies? 

Julia Piper: Well, interestingly, I suppose my son was a very good case study in that he had a diagnosis of schizophrenia many years ago. He's 34 now, but he's done incredibly well. I mean, he initially was, had drug-resistant schizophrenia and eventually was switched onto something called Clozapine, and he remains on that for various reasons because we're still working with him. He now on a combination of Clozapine and low dose naltrexone, and he takes a lipotherm glutathione. but along the way, we had, you know, remember when the brain is inflamed, when you have neuroinflammation that our cognitive processes in schizophrenia and in many conditions, but particularly schizophrenia, completely change.

And therefore our perceptions completely change and there are times when the brain becomes fragmented. Schizophrenia is a form of dementia, okay. So that we've managed to turn that around a lot by diet and by diagnosing underlying stealth infections, which were treated. But interestingly, this combination of the medication, which again would be working, eventually, it may be to reduce that, but at the moment, he is stable on the medication. Plus, we initially had IV glutathione and now we're onto the liposomal form, remembering that that enters the cells and can pull out metal such as mercury, which we’ve measured, And we know that that's at the root of his particular problems.  Part of it.  the LDN availability the Low Dose Naltrexone in him has been a great success because with schizophrenia, the microbial activation that happens when you've got cytokines. Cytokines are little messengers produced by the immune system when there's a lot of these around, you know, the immune system of the brain, which is called the microglia, becomes activated and Low Dose Naltrexone, we know, calms that down and it restores the TH1 to TH2 balance. So it means that the tendency towards infection in autoimmune conditions and there are many of them, you know, obviously the inflammatory bowel diseases, Crohn’s disease, rheumatoid arthritis. I mean, there are over 100 different conditions.  And many people may not realize that schizophrenia, for example, it's an autoimmune condition, but they are all helped when we address this TH1 to TH2 balance and increase T regulatory cells. That's a lot happening when we're using this, I've had great success, Linda, in David, my son, but we use it as part of a multidisciplinary approach because we're looking for particular weaknesses, if you like, of, or dials that we can turn in our biological systems that the body will be up to shift with. And when, when we're working on each of those dials simultaneously, at some point, there's a shift and the body is more able to sustain itself in a healthy manner. And I'd like to see more if this biological system of medicine really taught to university, I believe it's becoming more mainstream, I know Bristol university have a scientific department which teaches science underlying functional medicine and I know, a colleague of mine, her daughter's training there. So, you know, things are beginning to shift so that we understand, you know, what it is we're trying to do in modulating and change things at the root level. I think that's good, don’t you?

Linda Elsegood: Yes, definitely. Now, when a patient comes to see you and you've got more than 10 minutes, who obviously has some chronic disease, but they don't know what's wrong with them. How do you go about helping that person when they've walked in, and you know nothing about them? How do you set about treating them? What's the road map? 

Julia Piper: That's a good question. I have a detailed questionnaire, because I really need them to fill out because I like to gain as much information on paper before somebody walked through the door, so it includes the multiple systems questionnaire, for example, I can see quite quickly if somebody is scored like two on the multiple systems questionnaire, then those two symptoms might be incredibly distressing

but I suppose somebody who's scored 165 and like you sort of just gets this. I think I know the questionnaire, I  know what I'm looking for. You know, and we’re asking quite deep questions sometimes to get people to try and think down to the root. You know, what may be their pathway to illness and with functional medicine, we're looking at the detailed question, detailed history. And a road map. They're doing a flow chart as often as someone's life, just to see where these pivotal points are. And when you do that, it becomes much more obvious at what point and what are the triggers and the mediators and you know, the, um, the pathway to wellness, the antecedents, if you like.

So, for example, I mean, I suppose tick bites and the Lyme disease, or even what may turn out to be a chronic infection, for example. We refer to Lyme disease as something which is a chronic and difficult, in fact, the wording and the nomenklatura the naming of these long term conditions now and not so much Lyme as something called M-S. I. D. S. multiple systemic inflammatory disease and infectious disease. So disease syndrome of multiple systemic infectious disease syndrome. And these conditions can become chronic. But if you look at this questionnaire, and you look at the flowchart as someone comes in, you can see how they had, what are the triggers, you know, if there's something recent that suddenly made them present and pick up where your pivotal points are.

And if say for example, in the case of M-SIDS or Lyme, we can, if we can pick up someone lives in a forest or lives in an endemic area of the new forest in the UK, for example, and has had tick bites. Okay. That's not the only thing that's made them ill, but that's a pretty important point that we need to not to miss.

And we asked a lot about toxicology. We ask about—exposures about sensitivities. You know, people have multiple chemical sensitivities. At the root of functional medicine, in the end, two things. One infection and two, toxic insult to the body.

And we want to know what is burdening this person's body that they are suffering from so many symptoms. Almost list numerous systems, too many to this, or you can look at the systems that are going that had been affected that may be producing these symptoms.

So my map, if you like, to gain as much information, particularly about, it's about everything, but it's particularly at the root cause and particularly in a section of the body burden. Does that make sense? 

Linda Elsegood: And how long does it take on the first consultation with a patient to go through.

Julia Piper: Well, I would say we normally try to allow an hour because by the time they've come to see me,  people's often seen in quite a few different doctors. Physical a few little tests. They've been with them and then they've completed this questionnaire, which I find enormously helpful because I can get, I can, I get a really good feel quite quickly.

 With what is going on because there's, you know, once you've understood and you've worked for systems biology for a long time and studied hard, you can start to see where the pivotal points are even sometimes before you've tested. There's that first time.  Well, I'll do a flow chart to see exactly what's been happening over their lifetime, and I can pull it, pull into any tests that may be completely personal to just, you know, pinpoint and a little bit more exactly which dials we need to turn to get somebody better.

So we normally. Sometimes you can get a few little tests done on the day, but I don't normally like to do tests the first time I see someone, because I like to email everybody with potentially a few tests they may need and then you can have a little think about them. And then we can have another little chat often by phone.

because people would sometimes come from quite a distance so I don't want to drag them back. We usually do a little examination at the end of the first hour, and then I'll send them a list of things that I think would be sensible. And then you know, the sort of little few little thoughts about, how, I think the road map is and why we need these tests if any.

The test can be quite expensive, unfortunately. See, we don't always test, but sometimes it can just target you a bit easier. It's quite in order for patients to go back and get the simple tests and that GP of course, and we can sometimes, well since example, I do less just to give an example, less a food sensitivity test now I tend to do the elimination diet and take out things that we know can cause problems. And so it's possible to do things more pragmatically as well. So but that's, that's what I did today. So I'm kind of, I've got to go back and do a couple of emails to patients and, you know think about exactly which tests that we do.

Then when we get the results, we can start with low hanging fruit and then move forward. I'm actually in a situation to see a lot of people, people who are seeing different doctors. So I'm usually, they've had most of the tests done by the way. So my job is seeing where the gaps are and how else we can support, you know, in ways that haven't been considered at that point.

Linda Elsegood: And of course, a lot of people are still unaware that if they've had tests done by their own GP that you are allowed to ask for a copy. You can be charged, but everything you are allowed to have access to everything. 

Julia Piper: And very important people know that they can have a test by the GP  and go back and get them. I can write them down what you need, and you then go and ask them. And it's difficult because some people don't like to go and ask their GP for tests because you know, they, they feel that they might get upset or something. So that they'll only know if you could, I can write them down for you and then I can always write to GP’s if that’s necessary.

I think this is a shame really because a lot of doctors, understandably, I mean, I would have been in the same position if I'd been in the NHS. You know you haven't got time and having the study date, it takes years of study and understanding. When you look through a lens of root cause medicine, it's really hard, you know, because we were trained in such a different way.

But to me, the two can live together well. And the new young doctor at the DePaul side plan, bring out the functional medicine because there's a frustration in the way that they and I do some work at the investor heavy recently in Leicester. And we had a few students, one by one coming in, one sitting with me, and then we had a meeting with them at the end. And I just sat down with them for a day, and I just tell them my son's story, you know? And I said, how much nutrition training have you had? And it's actually zero. Yeah. And it was a shame and I feel so sad and I think to myself, you know, really when I trained, I didn’t know anything about it either, you know, and I say, I think life has changed.

It's for the better. I know we, so, gosh, there were on the internet and wifi, and EMF obviously, we have to limit our exposure, but I feel like there's a lot that's getting better because people understand so much more now. But having said that. I'm thinking it must be very frustrating if you're on an HSG PA traditionally trained these days because a lot of patients that got anything about being ill will know more about it than you do as they come through the door, because they've looked at some of the root causes, and I think it must be very frustrating to be

A doctor in this day and age with such knowledgeable patients because I'm contrary to what a lot of people, and I think Google is amazing. I think the knowledge has got on there, you know? 

Linda Elsegood: Well, we're nearly at the end of the show Julia, but just wanted to ask if a patient goes to the doctor and explains that they've been to see you, would you be happy to work with the GP as well?

Julia Piper: Oh, gosh, yes, very much so. I mean I think a lot of GP’s are very, very busy and you know, again, some people probably feel a bit upset because they feel a bit threatened and that's a shame. You know, it's difficult I think in some cases we have quite a few patients who, especially when their children are involved, you know we have to look after the family and communicate to all agencies because a lot, there's a lot of misunderstanding around children with multiple symptoms and where traditional diagnosis could not be found. Sometimes there’s a lot of pressure put on the families that maybe they're making them up or making the child ill or whatever. So, you know, I do a lot of work with working on explaining carefully what we're doing and actually that is some problem going on and here with the test results. And so we do do that. And sometimes it can be very difficult, you know because people do feel a bit threatened, especially when they don't understand something. Obviously you were working with weird situations and with thought processes,..... mass guidelines.

And so I haven't set up, I mean, B12 injection, somehow we use B12 is something that's actually within the nice guidelines and sometimes you end up, you know, just explaining, well actually you can give this because this person has their neurological condition. And that's what it says in the novice guidelines that sometimes you have got that backing.

But I think the answer is yes, we will work with the NHS under the doctors, and we should be working as a team, and we should be trying to separate things out that sometimes, in reality, we have to, but that's, that's the decision. If the patient, when it comes to a child that has no choice because it's not that time particularly.

Well, you know. Cause of child children in need or child safeguarding. We all compelled to communicate, and we have to communicate. So am I making that up? Yes, I am. I'm just kidding. Basically, yes. And sometimes that's a choice in it, and sometimes there isn't. 

Linda Elsegood: Okay. Now if people want to come to see you, do you have a waiting list?

Julia Piper: Not at the moment no, we don't. We have, I don't, you know, I think at the moment, I don't work all day, every day seeing patients because I tried to keep a balance but we have other doctors here who I work with and we have a lovely coach, health coach and a nutrition coach and a nutritionist who came in and went with us as well.

So, that's the way we do it. So sometimes if you know, I didn't need to do everything, then I can ask them, and I'll tell them certain things. And I find that you know, you can sort of work out what you might need to do in life and then you need that little bit of extra sort of access from a motivational perspective.

She may not change, cause sometimes that isn't so easy, you know, so it's not just me we've got other people that we know that can help as well. Wonderful. 

Linda Elsegood: So could you give us your website address, please do. There. 

Julia Piper: Yes it's https://www.privategp.com/. We rebranded this year before we were very much more like a traditional practice, but I think my daughter said to me, mum, you need to make your website who you are. And so she helped me to, to do that and it was difficult—the time. I remember my father was very poorly. I mean, we lost him in the end.

I found it somehow we've managed to do it despite everything and which we did it. We launched it in May this year. And I hope you like it. So, any feedback would be gratefully received. 

Linda Elsegood: Well, all I can say is thank you very much for sharing your experience with us today. It's been really interesting.

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