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LDN, the too good to be true story of how I came to not feel suicidal for the past month.

Photo credit, Stephanie Stewart-Howard “12thandbroad.com” (see link at the bottom of this page).  

It is precisely the “Snake Oil Effect” that makes peoples eyes gloss over when I mention LDN.  It just sounds too good to be true.  

It is inexpensive and has little to no side effects, even at the higher FDA approved dosage of 50-300mg/day, which has been used to help wean addicts off opiates and alcohol since it’s 1994 FDA approval (see LDN factsheet link below).

LDN is literally “Low Dose Naltrexone,” using dosages of 1.5-5mg/day for healing vs. the approved FDA label “high” dose for helping relieve alcohol and opiate addiction.

“It’s even effective on cancer!” I have been heard saying enthusiastically, as the person I am speaking to turns and quickly exits the conversation.

Why does it seem too good to be true?  Because it doesn’t fight the disease itself, it heals your immune system so that your body can fight the disease. Is it a miracle drug, no.  Will it heal or cure everyone and anything?  No.  If you keep drinking diet coke and eating preservative laden food, smoking, drinking, and sitting on your bum, will you likely feel well even if you take LDN?  I seriously don’t have any idea, as I work to avoid those things.  

cannot think of a profession more frustrating than working as a doctor or health care professional in the modern western world:  

Dr., “How can I help you today?”

Patient, “I am hurting, sick and/or depressed.”

Dr., “We know that a healthy diet, exercise and hydration are key to wellness.”

Patent, “Sure, I do all that... but I am still very ill.”  The patient just went through the McDonald’s drive through and enjoyed a quarter pounder with cheese and a diet coke on the way to her appointment.  When she gets home she will have 2 double bloody-marys to relax.  She also drank 6 cups off coffee, including several vanilla latte’s today.  She never drinks water. To be fair, she did run 4 miles at the gym.

Dr., “Well, if you are doing everything we know will keep you well, I suppose I can prescribe a few of the miraculous medications our Pharmaceutical Reps have shared with us, out of the goodness of their heart and the desire for the healthiest population in the history of mankind.”

Patient, “Thank you for listening and caring.” And she leaves with a prescription for Ambien, to sleep better, Klonopin to feel less anxiety, and Lithium for her original diagnosis of bipolar.  She knows she can get any drug available, with less than a request for it, based on her diagnosis.  She also knows she will misuse or abuse any medication she is given.  She actually seeks out drugs that will be effective in an overdose.

Dr., “Next.”

I didn’t want to be that patient anymore.  No drinking, no diet coke, exercise as tolerated, eat organic and clean as much as possible, pray, meditate, sleep well... and guess what?  Since I am bipolar, and after 3 years of being medication free, I ended up back in the Dr.’s office.  I was sure there wasn’t an answer for me. That was on April 24th.

 On April 23rd, the day before my doctors appointment, I had emailed the Seattle Neuropsychiatric Treatment Center. The first question, and it’s a fair one, was who am I insured with.  I found out that Electric Convulsive Therapy, ECT, would run about $30,000.00 for 12 treatments and Transcranial Magnetic Stimulation, orTMS, about $9,000.00 for a 6 week course. During which I would need to be living in Seattle. 

 I spoke to my husband, who had stayed in from fishing more than twice this April to take care of me. That doesn’t happen.  He has missed children being born, holidays, birthdays, life.  Life goes on when you are married to a fisherman, unless he is so worried that life will not go on, and in those rare crisis he has stayed by my side.  In the past that meant he came in after I was hospitalized.  Recently it has been because he understood I did everything in my power to be safe and healthy, and still wasn’t.  So he stayed.

 When he was in town again, although the tides and fishery allowed him to be on the fishing grounds, I said, “I am going to have to go get help.”  And he said, “please go to the doctor here and ask him about your idea, but I support you no matter what.”

And that is how I found out about LDN.

 When I left the Dr.’s office that Friday the clinic was closed.  He had listened sincerely, he had given me feedback on ECT and that he didn’t know anything about TMS.  He gave me the option of Depakote or LDN, but I didn’t write down the name of the second one, and I knew I would refuse the first option.  He listened to me for so long that the clinic was closed when my appointment ended.  I walked out into the clinic corridor to a building only lit by daylight.

My best friend, who works there, led me to the door to unlock it for me.  I hugged her. I cried in defeat.  My anger and disbelief overtook me.  After all I had done, after all the changes, I would have to be medicated.  There seemed no other option. 

 I couldn’t find any information about LDN that weekend, having not written the name down.  

 “Can I have your doctors appointment Missy?” I asked my daughter. 

 “If you really need it,” she said.  I really did.

 When I went back on Monday morning I said, “tell me again, what is the name of the other medicine, not Depakote?  I couldn’t find it anywhere.”  

 After finding it wasn’t a bigPharma drug, my heart and mind opened a little more.  I didn’t believe there was anything that could help me either.  And for less than $75 per month with little to no side effects? Puuuuullllleeezeee.  And Mrs. Stewart-Howard may say, “who do you think you are filling people’s minds with unscientific garbage!”

 Except, it is science.  Why does it work on so many illnesses?  Because it isn’t attacking the illness, it is repairing the immune system.  It is helping your own body heal itself.  It’s that simple.  If you want to learn more, or know more, please “Google LDN,” as the author Joseph Wouk suggests in his like titled book.  He also drank diet coke, he suffered from MS and his symptoms were relieved with LDN.  

 I tentatively noticed the first morning, after my first night dose, that some veil, some cloud, something was gone.  I didn’t want to get my hopes up, yet I recognized it as something I had rarely felt in my life, an absence of wanting to die.  

On May 29th I will have been taking LDN for a month.  Did it take weeks to work, no.  Will it be the same story for everyone?  Of course not.  However, what has anyone got to lose?  Suppose you try it for your illness and it works. Hooray for you.  Suppose you try it and it isn’t the problem, your immune system doesn’t need support, your endorphin levels are normal, well, you can always work on your diet, hydration, exercise and meditation.

It reminds me of when my mom would say, “Lisa, why don’t you try saying a prayer.” 

Of course I would say, “that won’t automatically make things better.”

And she would say, “it can’t possibly make things worse.”

And that’s LDN.  It can’t possibly make things worse.

http://www.ldnresearchtrust.org/sites/default/files/UK%20LDN%20Fact%20Sheet%202015_0.pdf

http://www.12thandbroad.com/story/news/2015/05/06/broad-bits-snake-oil---why-are-we-so-easily-led-by-conspiracy-theory-over-science-when-it-comes-to-health/70905164

 Disclaimer:  the realization that there is a medicine that has relieved symptoms and increased my hope for health in no way reduces my prior blogs.  Many ailments can be remedied with diet, exercise, hydration and meditation.  My experience with LDN is in addition to the many changes I have made, and maintaining those choices give me the best chance at a healthy life.  Bipolar I is a devastating illness which I worked very hard to maintain without drugs.  In this case I feel BLESSED to have found a drug, a medicine, that has helped with symptoms I had to work extremely hard to manage, or couldn't manage.  Even if it felt, initially, like I was betraying my own self. In order for growth to be possible, flexibility must be present.  It took some major flexing for me to accept medication.

Lisa Nilsen
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Shouldn't we be aware all the time?

My mind expands when I listen to another viewpoint, process it and do so with respect.  Thank you Laura for taking the time to put together this heartfelt perspective, Love Lisa.Why just during an awareness "month"?

Why just during an awareness "month"?

I’ve participated in plenty of organized awareness activities for different groups, and my heart truly is there, but honestly I just don’t get them. For instance, May is mental health month or October, get your mammogram because it’s titties month. How about Tourette awareness month from mid May to mid June? I lovingly chuckle at that one because I live in a home with Tourette’s and I get it. These are frustrating for me it feels limiting; or maybe it’s the commercialism, or maybe I just don’t get it because in my mind I’m thinking, “Shouldn’t we be aware all the time?”.  Also, e.v.e.r.y.o.n.e. has a cause to bring awareness to these days.  There are so, so, so many of them. It doesn’t lessen the importance, they are all important. So, what are they trying to accomplish?

Let’ start with what www.mentalhealthamerica.net defines as the purpose of mental health month:

  • Fight stigma 
  • Provide support 
  • Educate the public and
  • Advocate for equal care

Couldn’t those bullet points apply to every single activist group out there?

Then it hits me, this is all rather selfish of me. I have a 41 year history of events coinciding with mental illness. I’ve practiced fighting stigma, I’ve practiced providing support, and I’ve practiced educating my friends and have been directly involved with mentally ill patients getting access to appropriate care. If I haven’t been able to practice those appropriately, I’ve learned from them. I don’t want to sound like a crusader, rather it’s more that my exposure has created an open mind and I assume everyone thinks that way.   As a human race, as cultural societies, we are still so young and continue to make humanitarian advancements.

Take stigmas for example. Racial equality in the U.S. really hasn’t been around for very long. Still, it’s very different than it was in the 1950s. Do we have more work to do? Yes indeed. How about gender equality? We’ve come a long way since the early 1900s, but do we still have work to do? The answer is yes; if you were going for something different then stop…the answer is yes. We could go on and on about equal vs. unequal groups, but if you look at the underlying issues of these you will find that stigma is a common thread. It’s one brick in the wall though. Another may be ignorance, another not being compassionate, and yet another, intolerance. On and on.

What about providing support and educating the public? Recently I was in a lecture about how the Seattle Police Department responds to domestic violence calls. One participant asked,“What good are public service announcements on T.V. about domestic violence which tell the abusers what they are doing is bad and they should stop? I mean, they aren’t going to look at that and say ‘Oh, I guess I should stop beating my loved one now’. And it doesn’t apply to me but I still have to sit there and watch this commercial when I know it’s not going to have any effect on the actual abuser. So who is this benefitting? What’s the point?” I related to what he said. Then I started thinking about the domestic violence PSAs that have been very prominent on the Alaskan T.V. channels recently (Real Alaskan’s Choose Respect). I really, really appreciated those. I knew it wasn’t going to solve an epidemic in Alaska which has ranked it as the #1 domestic violence state in the U.S., but like the SPD police officer pointed out, those PSAs let the abusers know that we are openly talking about it now. The problem is not staying behind closed doors, it’s out in the open now. Furthermore, there are support groups, there are agency assists for both the abuser and the victims, and we are making progress forward. I suppose this is one example of how campaigns strive to raise awareness.

These awareness campaigns, of which I’m both cynical and hypocritical as I complain while I participate), admittedly mean something to me. If for nothing else, it sheds ignorance and raises awareness. Who in roller derby had a pre-conceived notion about the game and its participants that changed once they started participating themselves? Mmhmm. Was it the sport that changed? Did the players, refs, NSOs, and volunteers change? Nope. They remained the same. Our education about them changed and we became less ignorant. We essentialy went through an awareness-campaign-process when we started donning our skates and learning the rules. We’ve come to admire it; we want to eat, sleep, and breathe derby. We realize there is a place for everyone in derby, and don’t we want to sign them all up for this epically awesome adventure with us? Now, apply that thought process to any of your stigmas of us vs. them, to your ignorance of an issue that breeds fear, or to keeping silent during a seemingly innocent slam against something you didn’t understand before. When we elevate our understanding about a mentally ill person for instance, they don’t suddenly change, we do. We don’t try to conform them to us and make their issues invisible, we acknowledge and go on with our lives with more inclusiveness.

If you have also participated in roller derby you can relate to Bonnie D. Stroir:

“Most seem to find roller derby in transitional periods…. We ruin our bodies to save our souls, and for some reason that makes perfect sense.” 

And you still feel above that person struggling with mental illness? Bitches please! Start at home first, then take it to the streets (or track). I only ask that you do it all year, not just in May. <3

Laura Johnson
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