From: Chris Kerr
I noticed your blogspot ‘Ask Nicola’ and was really pleased to read you’re benefiting from LDN.
I thought you might like to receive a copy of a book featuring 29 case studies attributing low dose naltrexone (LDN) with improved health.
Book Title: ‘Those Who Suffer Much, Know Much’, July 2008
Content:
20 Multiple Sclerosis case studies
2 HIV/AIDS case studies
1 Hepatitis B case study
1 Primary Lateral Sclerosis case study
2 Cancer case studies
2 Crohn’s Disease case studies
1 Multiple Benefits case studyContent also includes an explanatory article, and interviews with professionals familiar with LDN – Dr. David Gluck, Dr. Tom Gilhooly, Dr. Jaquelyn McCandless, and Dr. Skip Lenz, Pharmacist.
The book is available on casehealth.com.au free of charge, and can be freely shared forward.
[snip]
I sincerely hope you’re still benefiting from LDN – and if one day you have time to pen your own case study submission, I’d be happy to include it in the Case Health database, or the next book collection.
Thank you for this. I wish there was more work going on in the medical community with LDN. I think for some people it has a lot to offer. For some, of course, it really doesn’t. (Because we’re all, y’know, different.) LDN helps me very much in some ways, and not much at all in others–but it’s cheap, it doesn’t leave huge needle marks, and it doesn’t make me feel (as Kelley so kindly puts it when I’m feeling, y’know, pale) like ‘death on a cracker’.
However.
When I saw the title of your collection of personal testaments, Those Who Suffer Much, Know Much, I howled with laughter. Then I realised you probably weren’t being ironic, and got pissed off.
Those who suffer much, know much, yes–about suffering. Period. We don’t magically turn into patient sages. In fact, when we’re not paying special attention we get vicious and manipulative; pain and frustration will do that to you. Implying that people with autoimmune disease are wiser in some way than healthy people is as Othering as thinking of American Indians as noble savages, women as sweet and humane, or sick children as saintly beings. It’s horseshit. It’s dehumanising.
People with illnesses are not special, we’re not wise or kind or saintly. We’re sick. We’re human. We expect to be treated like real people–just like women, and Indians, and sick children.
Fifteen years ago I wrote Ammonite to answer a simple question: are women human? It’s a stupid question, but clearly it needed to be articulated and answered because so many SF novels about women-only societies assumed Girly World would be full of wise, kind, vegetarian amazons. Right. Women are not ‘the softer side of the human race’, we are fully human, in of and by ourselves. (You want to know more about my thoughts on the deconstruction of essentialism? Read “War Machine, Time Machine.”)
I walk with crutches–my legs mostly don’t work that well. There’s nothing wrong with my brain. Nothing wrong with my hearing. Yet very often people at, say, the airport, will look at Kelley and ask, ‘Does she need to sit down’? She, I say, is not in fucking Peru. She is right here. And she wants to see your fucking supervisor.
Every culture has a different response to illness. I think the English way is best: a frank appreciation of difference. English people will stare for a moment, then (if they’re the smiling type) they’ll smile (or give you the finger if they’re the other type). In the airport, when I have to use a wheelchair to cross the gigantoterminal, the person pushing will say, cheerfully, “What happened, luv? Car crash?” I say no, MS, and they say, “Oh, my mum’s friend’s got that. Well, here’s your gate. Anything else you need? No? Have a good flight.” The American way is to turn away, pretend I don’t exist, or to treat me like a minor: doing things for me without my permission, talking as though I’m not there, being genuinely astonished (or embarrassed) when I speak.
Okay, now I’m doing it. Not all Americans are like this. Uptight and conservative people–and the South is very guilty here–of all stripes are more likely to Other me (whether as a cripple, a foreigner, or a dyke). People in the Pacific Northwest are much more Scandinavian and pragmatical about the whole thing: huh, she can’t walk, okay, what adjustments do I have to make to ensure good service/pleasurable evening/safe dentist’s visit? And if they’re really smart, they actually ask instead of assuming. Because, as thoughtful human beings, they know that ignoring difference doesn’t make it go away, it just increases the gap between people.
I’m aware I could be misinterpreting your work. So please don’t take this as a personal attack; it’s more of a general rant. But do, please, change the title of your book.
** Edit. Okay, it turns out I have misinterpreted the work’s title. So my apologies to Chris for that. But the general rant still stands. People are people, people. **
I count among the best experiences of my life the time I worked for Quickie Wheelchairs. Three years and all stigma and illusion are gone.
Nicola…you most likely will not like my response. I am not shouting. I am commenting. I had to read your entry-twice. >>I raised a child into adulthood who knew nothing of mobility other than as a person who went from place to place in a wheelchair and indignities such as having to pee through a tube.>>I have worked with individuals with mental challenges and people with every assortment of physical impairments from MS to traumatic brain injury. >>I have done this all of my personal life and all of my professional life.>>How others respond to those who possess a differentness is not universal. How one respond to them either can educate or alienate. The ignorance gap can be closed or widened.>>Have I ever been angry about my daughter’s circumstance? Ask the two drunks who pulled right in front of me, a la Fried Green Tomatoes, on a cold, sleeting night,took the only handicapped parking space available and laughed about it. I remember some shouting and something about a ball bat and broken knee caps. It is a wonder I was not shot! >>I most certainly believe that those with the differentness know plenty. And not just about suffering.>>I also respectfully disagree with lumping the south into a general category of disability insensitive people. >>Understanding the meaning of differentness,or the lack thereof, IMO, is not regional. Ignorance is ignornace. And most of the time, insensitivity is simply not knowing “how” to respond. >>Therefore, we educate. One person at a time.>>I hope that I don’t get shunned from Ecotopia for this…
Hey Nicola,>Totally agree with your post.>>I just wanted to add that I think that illness has taught me more about life and the person I am than any other experience. Nothing is more constantly challenging on every level. I like the title, it’s kind of zen.>>xo-
You know about Jacqueline DuPre, right. She was the greatest cello player of our time, and, perhaps, any time; also Nancy Mairs, a great American writer. They had and have MS. To a certain degree, they were both trapped by their bodies, but not by their minds or imaginations. No one can understand what it is to be hampered except people who are. The rest of us just sort of fumble around for a response. I’m just glad it makes you mad. No matter what shrinks, mothers and well wishers tell, you don’t ever have to let go of your justifiable anger at being hampered.
ssas, cool. I expect they were lucky to have you, and you them.>>linda, sure educate one at a time. And, yep, I was being prejudicial about the south. Five yrs of living there gives me one-time bullshit rights. I won’t make a habit of it.>>jane, illness has taught me a lot, too. But lots of things teach a lot to a lot of people. I don’t think, for example, poor people are Special. And, yep, zen r us :)>>barbara, yep, I know about the tragic-talent-with-MS people. And I don’t generally make a habit of anger–but I do like letting it off the leash every now and again. Very…cleansing.
Interesting observations. I’ve had MS for nearly 16 years and fibromyalgia for 11. About two years ago, I began to need a cane or a walker all the time. My vision became such a problem that I was unable to drive. >>I noticed how people tended to treat me differently, as though I was suddenly more fragile than before. I’m a sturdy guy (5’11/ 240 lbs) with a booming voice. The last thing I am is fragile. >>I’ve discovered the more direct I am, the more people are relaxed around me regarding my illnesses. I tend to let people know I have MS and then start talking. When they realize my brain is fine, everything else falls into place. Confidence and bravado have always been my saviors.
rick, yes, in human situations, people tend to treat me like a human being. But the TSA, well, no, they just suck. I very nearly got into an actual fight with one woman at Hartsfield a few years ago. I still don’t know how I kept my temper (it was a close thing; only the thought of jail, in Atlanta, kept me from punching her in the throat). Generally, I’ve found that people treat me the way I expect to be treated. Generally, I expect to be treated very, very well, and am. Unfortunately, I expect to be miserable when I travel and, well, so I am. Sigh.
Being from Georgia, I can say that Atlanta airport does often suck when encountered with something/someone that isn’t just like the person doing the official staring. I’m from there and have grown to hating the little song and dance I have to do each time I go home. But if I don’t I get to be humiliated by those who have the power and pleasure to do such.>>Anyhoo, if you need to spit about Georgia, I’ll be in your Amen corner. Tell it sister.>>And, thanks for sharing personal and private bits of your life. It helps some of us square heads become more rounded.
Thank you. Sometimes I just like to vent. It’s an indulgence.
Venting is good…anger out. But anger as a steady diet is like driving your car in first gear,all the time, at 90 miles an hour. It will eventually burn up all the good stuff, get you stuck, most hopefully not in Atlanta. :)
linda, no doubt you mean well but I’m really not in the place for advice.
Well, on another note, it’s beginning to look a lot like christmas around here. I took a walk in the Venice canals near where the studio last night. I’ve posted one on http://gallery.me.com/tennjd#100505.
What happened to my link?>>< HREF="http://gallery.me.com/tennjd#100505" REL="nofollow">our gallery<>
Comment noted but it was not directed specifically at you…if you felt that it was I cannot alter that. I was speaking to disability and anger and although it is justified,long term it serves no purpose. I also do not give advice. Your experience is yours and mine is mine.
jennifer, Wow, we have such a range of pix now: the sunshine in Mexico, whitewhite snow in Maine, Christmas lights in LA… At some point we’ll buy a tree and I’ll take pix of that.>>linda, when someone uses the word ‘you’ I assume they mean, well, ‘you’ not ‘me’. Also, emotion isn’t purposeful; by its very nature it’s irrational.
Hi Nicola:>I’m supposed to be here to comment/volunteer/commit to the creative coop project, but i read this post with great interest and amusement and, i guess hope – the same kind of hope that the creative coop project gives me.>My husband has Limb Girdle Muscular Dystrophy. Airports and travel from point a to point b suck. What i don’t get is why, when obviously we are not the only family who travels and also has someone who needs a little help, many of the airporty personnel seem completely flummoxed and completely stymied by our situation. >OMG – Curtis (mr. kat) is so incredibly pissed off when he’s right next to me and airport or hotel people will ask me something about what he wants/needs. I have learned (depending on what kind of mood i am in) to look at them and say, “i don’t know. Let’s ask him, shall we?”>of course, other times i can tell people are doing the best they can. I think a lot of people are afraid of getting too close to anyone with disability/illness because it’s a reminder to them that life is fragile–there are no guarantees–the world is an imperfect place. >I don’t know. But, i liked reading your post. And now, on to the creative coop post where i shall also comment and go on and on too long and act like a big geek.>~ Kat
kat, sorry to hear about Mr. Kat. Most sorry to hear, though, about idiotic treatment. People need to learn, damn it.
I just stumbled on your site looking for info for a friend. She has MD, I have MS, and God blessed me with a sharp intellect, a sharper tongue, a gift for languages/communication, stubbornness and an animosity toward authority. Then my parental units blessed me with the belief that I could do ANYTHING, as long as I made an effort…. so far, they've been correct.
A quick background, my MS was so bad as of 2 years after DX (1998) I could no longer work. by Jan 2001 I was legally blind in my right eye and neuros told me I'd NEVER see better than 20/1000 out of that eye. I've had every symptom attributed to MS I've ever seen (over 30, anyway). My eyesight was 20/40 by late 2001, early 2002. Since December 8th, 2012 I have had ZERO symptoms of MS, and even my allergies seem to be awol (not that they needed official leave…). Except 2 days when I forgot to take my single prescription, an inexpensive generic drug, tweaked by a compounding pharmacy. Then I noticed mild allergy symptoms.
I'd like to share what I did to achieve this… I'm not a doctor, I'm not saying it WILL work for you, however with all the OTHER ppl I've assisted in a similar manner, I'd be quite shocked if you did not at least notice some improvement.
Back in late 2001 I did what I call a 'shotgun effect' I'd not recommend you do this, as I've since isolated what I took that actually helped. In the 'shotgun effect' what I took that was actually advantageous was:
Omega 3 fatty acids via Flax(seed) Oil I took 2g/day the 1st 3 years, then started on 4g/day during non allergy season, 6g/day during allergy season.
800mcg/day of octacosanol
I stopped all milk consumption for nearly 2 years while things healed up… there's a substance in milk called butyrophilin which they've proven will cause an MSer to exacerbate. But I drink milk now, not excessively, but 1/2 gallon a week or so.
Then about 4 years ago I found out my Vitamin D levels wee at 12, 25 is “critically deficient”, so doc put me on 10,00IU/day for a week, then 10,000IU/2x a week for 5 more weeks, when we tested it again I was at 47
Then about 2 years ago I got my b12 tested… will never know how bad it was because the PA screwed up and gave me the IM shot of cyanocobalamin (artificial b12) before I got the draw for the b12… 30 minutes later they took my levels, was at 416 then, which Japanese and Europeans all say is deficient… in U.S. they say not deficient until 200, but neurological deficits can start <450. So I got some Jarrow methylcobalamin 500iu and pigged out on one-2/day for a few weeks when I was tested again I was >1000.
But I STILL had the horrid fatigue (exhaustion, really) and could not seem to shake it. Everything I tried didn't help…. so I was stumped until I ran across LDN. it's a generic prescription medication that must be compounded as it's only commercially available in a 50mg dose… we need 4.5, typically. Got mine Oct. 2, 2012, started it immediately. I was really disappointed as many say they saw big differences 1-14 days after 1st dose…. I noticed NO difference until Dec 8th. Then it was like the fatigue was lifted off me feet to top of head then poof… gone… has not returned… I'm great.
Again, I'm not saying this WILL work for everyone… however I am saying, for NOW, unless/until someone comes up w/ something different this is anyone w/ MS's best chance to improve, imo.
Hope this helps someone. I'll try checking back now and then in case any Q's about why these steps work, etc…