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expate
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Posted: Thu May 1st, 2008 17:49 |
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I have a question about my 18 year old daughter. I suspect that she would benefit greatly from the MP. I will have her get a blood test when she returns from college. But I would like to gather some info before talking with her.
She has a seizure disorder (epilepsy). She did have just absence seizures. We discovered that aspartame, sorbitol, and maltitol were triggers for those. When she cut Diet Coke from her diet, she went from having 5 - 7 discernible absence seizures per week to no discernible seizures for three months. She inadvertently ingested aspartame and had a seizure the next day. Because of the seizure we reviewed everything she'd eaten the day before. The only sweet thing she had was half of a milkshake from Chick-filet. When we looked up the ingredients online and, in addition to sugar, it had aspartame in it as well.
She controlled her seizures through avoiding all artificial sweetners, but there were a couple of instances as above. So, when she was going off to college, she decided to take medication for the seizues just to be safe. She first went on Zarontin and had a horrible reaction to it - basically she started having hallucinations. We weaned her from it and she had her first tonic-clonic seizure. The ER doctor put her on diazapam as a stop-gap until she could see the doctor where she would be going to school. She had another seizure the night before she was to leave for school. That was last August.
She began taking Lamictal in August and did not have another seizure until, yep January, the night before she was to go back to school. And it seems she has had another today -- she is incredibly stressed out about finals and papers, etc.
She also used to get headaches, had periods of dizziness, never has much energy, and gets way too much sun/tanning.
So my question, if the blood work shows her to be high in D, do you think she would benefit from the MP? I see epilepsy on the list of conditions currently being treated, but have not found anyone who has that listed as their illness. Also, I don't see Lamictal on the list of drugs not to take while on the MP? Would she be able to continue taking it if she goes on the MP?
Thanks for bearing witih this long post,
Odette
Last edited on Thu May 1st, 2008 23:09 by expate
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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JRFoutin
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Posted: Thu May 1st, 2008 18:04 |
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Odette,
You are correct that D test results, along with clinical presentation, can confirm chronic inflammatory disease.
I hope your daughter will listen to her mother and take advantage of that awsome support system, find a good doctor, and make some difficult but important decisions for her life.
Most of all, at 18, I hope she will choose to post for herself and ask her own questions and dialog with nurses on the study site. I think you have already read me saying that adults do best when they choose for themselves the path in life they want to take.
Best to you and yours Odette--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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expate
Member
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Posted: Thu May 1st, 2008 18:32 |
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I expect that my daughter will post for herself if she goes on the MP. I am just trying to get together enough information to present it to her to convince her that this (if it is) is the right thing to do.
Thanks,
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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JRFoutin
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Posted: Thu May 1st, 2008 19:01 |
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Odette,
She might take the time to read:
Is the Marshall Protocol an Applicable Treatment for my Disease?
Phase One Guideline pdf file
Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol
D-metabolites tests
Which diagnostic tests do I need?
Protecting Your Eyes
Best to you and your daughter Odette--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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expate
Member
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Posted: Thu May 1st, 2008 19:46 |
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Thanks. 
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Thu May 1st, 2008 21:08 |
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Tobi wrote: Hi Dave,
The way it feels for me is that the body goes in to a stress response quite disproportionate to the stress stimulus. As though the body perceives that a lion has entered the house, when it is only the mailman or a neighbour. The heart beats faster and harder, dizziness ensues, flushing, tingling - all autonomic responses go haywire. I can jump out of my skin if the phone rings. This is how it happens for me. It feels as though there is an excess of adrenaline, which fits Trevor's observations that Th1 patients have an abnormal response to epinephrine. So if the body is always "overresponding" to minor stimuli, and perceiving them as threat, of course the body is constantly under stress. and responses such as hair shedding would be expected. No wonder we're exhausted. No wonder we want to be alone and quiet.Since a lot of these symptoms are also anxiety symptoms doctors can almost be forgiven for diagnosing anxiety- "almost" I said.
I know that a tiny crumb of Ativan reduces the intensity of stress symptoms for me. I'm sure my explanation is an oversimplification, but this feels how my body has functioned fom the start of my CFS.
Tobi
I emphasized part of the above quote because my daughter has always been hypersensitive to "surprise" stimuli (like someone walking into a room -- normal stuff). It makes me wonder if this hasn't been in place since birth.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Koorool
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Posted: Fri May 2nd, 2008 23:34 |
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Hi Odette
I've just encountered your musings and ponderings with a great, happy jolt of recognition and appreciation.
I'm just about to begin the MP after a couple of months of similiar stuff. Difficult, at the very least, to encounter something like this, the MP, which threatens to take you down in all the ways that really matter before returning you to the world in a new, (hopefully) healthier form.
I went around making (bad) jokes about all the puns and plays on the word "ENLIGHTENMENT" - seems we have to deprive ourselves before attaining it!
The lack of humour on the sites worried me, too. Very very serious! But I discovered that the closer I got to taking it all on, because it makes sense, the more my own humour dried up. Hence my pleasure on discovering your own, currently intact, humour.
Thanks. I wish you well.
Karen from Koorool.
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sarcoidosis since 2000, extensive lymphadenopathy, paralysed vocal cord, dysphagia, fatigue
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expate
Member
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Posted: Sat May 3rd, 2008 00:44 |
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Glad you enjoyed. I've been trying to put this all in perspective. I have definitely gone back and forth between tears over the difficulties ahead to firm conviction that this is the right course to take.
The seriousness. Yes. These people are on a mission. I understand it. First, they have found something that really does help. There is an urgency. And so many here were/are so sick.
Second, it is a study, an unfolding. If you want it to progress, you have to really be tuned in to the slightest details. You have to, on one hand mull it over, and on the other, not over-analyze to where you miss a very obvious connection. It is a creative process that I can't relate to entirely bcause it is in the sciences and those have pretty much been beyond me. But if I try to translate it into the artistic world, I get it.
I study(ied) ballet. There are people who like to benefit from other people's study, pay for a ticket, and enjoy the fruits of others' labor - the common audience. There are those who enjoy that but have exposure and a greater level of knowledge. Say, they'd taken ballet growing up, or studied classical music, or theater, and can appreciate more fully the performance. Then, there are those who talk, analyze, feel, totally "get" what's being presented in its fully integrated way - music, set, lighting, choreography, combined - people who see into the mind of the artist but have not chosen that path. And then there are those who actually perform, create, and offer themselves to this greater art.
I think maybe that's the process going on here - those last two catagories. We're in the midst of a creative process, but a scientific one. The really intense people need to be that way. They do this because they must. But they need us too. The ones who can appreciate at a level where we can give valuable feedback that will help them improve their "game".
So, I am diligently trying to get a good grasp of this. I know that I must in order to participate and to contribute. But this is not intrinsicly my art. I just don't really fit in or live it like they do. But that's OK. It takes all kinds. So, I try to stay true to my sensibilities too. Let's see how well I do once I start the protocol and feel yucky... 
Does this make sense or have I had a glass too many of wine?
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Knochen
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Posted: Sat May 3rd, 2008 00:56 |
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The lack of humour on the sites worried me, too. Very very serious!
Well, not always, so serious....
You'll need a sense of humor to get through the MP. Treating the meds, diet, and light exposure lightly will cause you a lot of grief, so take that part seriously. But it's OK to laugh about the counterintuitive nature of feeling worse before you feel better! It's a lot like the old Monty Python "Getting-Hit-on-the-Head Lessons" skit.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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GeorgeinRollaMO
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Posted: Sat May 3rd, 2008 01:06 |
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Odette,
You studied ballet, but you should have been a writer! You capture the gist of things/thoughts/feelings so well. I see you as one of the great Advocates down the road. 
You said, "They do this because they must."
You really hit it on the head!
IMO, there is no other game. This is the most logical pathogenesis for so many chronic illnesses. I think that it is absolutely amazing that it was not discovered before Trevor tangled with it, and had the fortitude to stick with it.
Thank you for your words!
Wishing you, and all, wellness!!!
Dark Vader...aka, George
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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expate
Member
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Posted: Sat May 3rd, 2008 01:41 |
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Thanks. Funny cartoon. Was it published, or is someone around here talented?
Also, I was thinking, to carry that analogy a bit further that, if I invited Dr. Marshall to take ballet classes because it would be good for him, make him feel better, and because it is the perfect integration of body, mind, and soul, I would likely be quite the taskmaster.
Of course I wouldn't laugh at his feeble attempts at a grand jete (sorry, Dr. Marshall, this is purely hypothetical ). I would do my best to teach him by word and example. But I know my passion for ballet would find me sometimes frustrated that he couldn't do the movements I asked for, or didn't understand the technique, or couldn't feel the placement of his body in relation to itself and the space around it.
I would try to explain that, while ballet technique may be tedious, exacting, and difficult to master, that is what allows you to do amazing things with your body with a lower risk of injury. Mastering technique frees you to do what you want with your body for the higher purpose of art. In the MP, I think mastering the basic science must free and bind your spirit to endure it (ballet can be painful too ) in the safst way possible so that you can use your body for the higher purpose of life.
OK, back to the kitchen...
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Knochen
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Posted: Sat May 3rd, 2008 02:31 |
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Funny cartoon. Was it published, or is someone around here talented?
I commissioned the work from Adam Koford, who does some very funny stuff. He had one with these cats in a boxcar (they're hobos, after all) and one is saying "Yay, I has a free stogie! ... Iz not so gret aktualy..." and I immediately thought of the MP and the masochistic attitude you have to take sometimes to make it work, so I wrote to him asking if he'd make a "special" just for us. He was kind enough to do so!
Trust me, it'll seem even funnier later
I think the seriousness you see on both sites is primarily because the moderators don't want to see people get hurt. This is some powerful stuff, and it's possible to get in pretty deep if you aren't paying attention. Also, it has to be done as a body of work, not as a pick-and-choose proposition, or it won't work. We also need to stay focused on task, since many of us have limited time and energy. This is doubly so for the medically qualified moderators.
The other aspect that I know is in the back of my mind when I see new people come in with a less than totally commited approach is the fear that they will go off and do some odd personal variant they will call "the MP", find it doesn't work (or worse), and then go around claiming "the MP" is bogus. It's not only unsafe to make up a "version" of the MP, it's a real danger to those of us who are depending on it to get our health back. If there was a lot of negative publicity associated with the MP (even if based on false information), it could seriously jeopardize people's ability to get/keep their doctors on board. So we don't take dilettantes lightly because they could hurt more than themselves.
The bottom line is that we want to see people succeed, but we also know that there isn't a lot of wiggle room when it comes to certain aspects. I'm not one of the real old timers here, but I've watched enough people go through the process in the past couple of years, and they all eventually settle into a similar groove. Take your meds on time and at the right doses, report to the study site regularly (and follow the advice), stay out of Mr. Sun absolutely as much as you possibly can, and really watch what you eat. It's simple, if a bit tedious. Everybody slips up once in a while and finds out how un-fun it is when you goof. Bad behavior becomes self-limiting!
I think you'll do fine once you know where the limits are. Like parents, we can tell you all day, but there are some things you'll learn only by finding out yourself.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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expate
Member
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Posted: Sat May 3rd, 2008 05:39 |
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Very cool that you brought the cartoonist in on the "situation".
As I understand it, this it the forum to explore questions we have about the MP before starting it. My questions are honest. I do intend to begin on 7/16, though I am tempted to jump in before that. But I am here trying to figure out how to proceed.
If my questions about caftans and parasols and analogies to ballet seem dilettante-ish, well get ready for the next step.
The way I see it, a brilliant and sick man found answers to cure his own illness, integrated the science he knew into his own experience, and discovered a new paradigm of pathology (that may be a stupid phrase, but I'm out of my element here). This knowledge and process spread among many who were ill while still in a discovery mode (I recall, I think, a trip Reenie had to the dentist that had effects that at the time Dr. Marshall knew he could ascribe to epinephrine but did not know why. I think the "why" is now better understood.). Many very ill people joined him. Their experiential knowledge combined with scientific knowledge has resulted in a better and better protocol.
The successes experienced by these people found their way via the internet, conferences, and health professionals to patients who are not as symptomatic (though I understand we may be as sick) as the first batch. Enter me.
I understand that this is a serious undertaking. That is why I am taking my time, expressing my reservations, concerns, and fears. That is why I am getting my ducks in a row before beginning so that I don't fail. But know that for someone like me who is not incapacitated, the prospect of spending years suffering in darkness is a bit daunting.
If I could be assured that following the protocol would only provoke symptoms I have suffered in the past, sheesh, it's a no-brainer. I made it through that, I can make it through this. But facing the probability that it will be worse than what I have experienced makes me question how much I can bear.
The immunopathology will likely be more severe, have more intense symptoms, added symptoms, pain and weirdness in places and organs I've never had a problem with (because of the bacteria existing at sub-clinical levels), etc. I read Aussie Barb's experiences and am in awe. I don't know if I can sit in the dark, in pain, with anxiety for years. She is amazing in her comittment, certitude, and compliance in the face of ... It makes me think of martyrs and religion and faith (I'm an atheist). I wonder if I will be able to call forth that strength and fortitude. And what about run away herxes?
And yet, this seems to all make sense. But I am no scientist. I took Biology in college in 1976. Has anything changed since then? I am stretching to try to understand the science behind this. But I have never touched a bit of this. If math enters into it, forget it. I am going on blind faith that the basic science behind this is what you say. I keep reading and begin to understand more but wonder what it will take to REALLY understand it the way you all seem to.
I understand your protectiveness of the MP, Knocken, but at some point, if this is really as mind-blowingly spot on as it seems it could be, there comes the next step... patients who are not as symptomatic but who have the blood markers that indicate this would be beneficial to them. What about us? Wouldn't it be awesome to treat this before developing horrific symptoms? How will you make it seem possible to undergo this treatment that may make me lose my job, endure who knows what, etc.?
I have never taken a steroid, a sleeping pill, or any other medication except Wellbutrin for the last 4 years and Protonix for a couple of months. I am 50 years old. OK, yes the odd pain killer after a dental procedure and UFAE, but that's it. I haven't had a cold or the flu in the last six years (though two colds this year). But I have a shoulder problem that is slow to get well and waning energy. Maybe I can nip this in, not the bud, but say full bloom instead of necrosis.
I've thought about how I spent a year and a half in various levels of discomfort during my two pregnancies. It was challenging in some respects, physical and mental, as I put my life on hold in some regards but keeping the outcome of bearing new life ever in mind. Now, I think about the MP and about putting my life (and my husband's and children's to some degree) on hold, but think that this will be for my birth into feeling well rather than just bearing up.
OK, way too long, but there it is.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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Koorool
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Posted: Sat May 3rd, 2008 06:30 |
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This problem of feeling out of your depth must be reasonably common for those of us without scientific savvy. I'm a writer - I find it easy to float around in an imaginative sense, but really challenging to try and follow the sequential links of science (without a scientific background, anyway).
On top of that, I also found the forbidding nature of this and the MP site quite confronting. No human contact, therefore no warm feelings or endearing qualities to help me feel good about it. The strict protocol regarding the gathering of information leads to the necessity for individual research and dissemination of facts - and leaves you all alone to make the decision around whether or not to proceed with the MP. Talking about it to other intelligent people helps, but in the end (at 3am, while sleep eludes and worries intrude...) you're on your own without full confidence or knowledge.
Difficult indeed. So much to give up and on the surface of things, pretty kooky! Friends and family flinging their hands up in the air screaming ARE YOU MAD???
I don't know if this is the forum for this kind of stuff, but just wanted to say that if my experience is anything to go by, you certainly aren't alone in feeling confusion and doubt. I still feel both, but am about to take the step of beginning the MP regardless, in the hope that it works as well as it sounds.
Have you seen Dr Marshall's 'Science' DVD? It helped me a bit. So does intelligent discussion and humour...
All the best, Karen at Koorool
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sarcoidosis since 2000, extensive lymphadenopathy, paralysed vocal cord, dysphagia, fatigue
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Dr Trevor Marshall
Research Team
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Posted: Sat May 3rd, 2008 12:55 |
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The lack of humor is because we are all so busy. None of us have any time to ourselves any more, we have so many folk whose lives are dependent on us.
You can get an idea of the real personalities, however, by looking at the videos taken during the recent Karolinska conference. The formal one in a HD (High Definition) version of the video is available at URL http://www.vimeo.com/955029 and, for those with slower computers, a less detailed version is available at http://vimeo.com/952759
It runs about 38 minutes...
There are a number of informal video 'transcripts' available. Paul's 10 minute overview of the conference for YouTube is up at URL:
http://www.youtube.com/watch?v=-JKJ4Wc5gEY
My pastiche of the reception at the City Hall is on Vimeo at URL
http://www.vimeo.com/939607
Paul has a collection of 'outtakes' at:
http://www.youtube.com/watch?v=pH9yC2Z106E
Hope those cheer you up a little
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Knochen
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Posted: Sat May 3rd, 2008 14:14 |
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If my questions about caftans and parasols and analogies to ballet seem dilettante-ish, well get ready for the next step.
Odette,
I wasn't implying that in your case, really. That comment was aimed more at the occasional person who comes in and "just wants to do some of the MP". And we've had a few who were obviously headed for a train wreck. You seem to have your head on straight, so it looks like you'll do the things you need to do. Remember that some of what the advocates and moderators post here is for "public" consumption, since others will read these posts when they are trying to figure out the MP and what changes they will have to make. BTW, I think the caftan is a great idea, as long as it really blocks the light.
I don't know if I can sit in the dark, in pain, with anxiety for years.
But we don't sit in the dark, we stay out of the sun. Big difference! Seriously, 30 lux is very very livable, and you'll feel normal in it quickly. Try this tonight (after it gets dark so you won't have any sunlight to interfere) - Put a 40 watt incandescent bulb into a table lamp (one with a light colored or white translucent shade)
- Sit about 4 feet away from it .
- Now look at your hands or a book or something.
What you are seeing is probably well below 30 lux. It's more "mood lighting" than dark. You can sit in that light all day without your Noirs and be fine. For a 60 watt bulb, you'll need to be further away, but the principle is the same. Staring directly at the light isn't recommended, but who does that anyway?
I agree that one of the next steps is to see what happens when people start the treatment earlier when they have few symptoms. I think there is great potential there. But people who's lives are only minimally impacted by disease are going to be more reluctant to make big changes in lifestyle, and there's the real rub. As far as I know, the mechanism behind the MP works the same for everybody, so the same precautions have to be followed for it to work. It's natural to have the notion that "I'm not as sick, so I shouldn't have to do as much". Heck, who wants to to more than they have to?
Actually, your ballet analogies are quite apt. And if you think of the MP as a performance (Hmm, a multi-year performance art piece... I wonder if I can get a grant?) you can stretch the analogy a bit further. Everybody in the show has to to their part well, or it won't come off "on the night". And there are a lot of "players" on the MP. There are the meds, the doctors, the patient and all the things the patient has to do to keep compliant, family, work, etc. A lousy performance by any one of those can make a hash of an otherwise great performance.
If you have been able to go through the rigors of ballet training, you have the fortitude it takes to do the MP. There will be days where you bewail your fate and wonder what you've started, but doing you homework now (which you are doing well, BTW) should give you the courage you'll need.
Like most new things, it's hard to initially gauge what's important and what you can safely ignore. Runaway herx in your case is probably a very very low probability unless you go out of your way to provoke it. Neural herxing may or may not be a big symptom for you. Knowing about it and watching for it are your best weapons. You seem like you are able to be pretty honest with yourself, and that's really all it takes. Be flexible: there will be days where you just aren't up to doing things. It's OK to allow yourself to "be sick" sometimes. (That's a tough one for a lot of people!) I don't use my condition as a crutch to get out of things, but I also make an honest appraisal of my limits, based on how I feel that day. And my limits change drastically depending on the immunopathology. Pushing past those limits is a false economy.
Difficult indeed. So much to give up and on the surface of things, pretty kooky! Friends and family flinging their hands up in the air screaming ARE YOU MAD???
Koorool, you said it! Part of the courage has to be the willingness to just not care what "they" think. Getting cured is not about consensus, it's about the bugs. And yet, as Napoleon said, "Real courage is the 3 in the morning kind". So even he had moments in the night where he wondered what he was doing.
Doing nothing is as much a decision as deciding to start the MP. I'm glad you've made the right decision. It's not as bad as you think, honest. It's like moving to a new town - you get in the swing of it pretty quickly and it all seems normal. I remember when I was first looking at the house that I am now living in and thinking, 'Well, it's nice, but it's a little too far from home!" I bought the place anyway and it became "home" in just a couple of weeks. No regrets since. It's been the same with the MP.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Julia
Advocate (on leave)
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Posted: Sat May 3rd, 2008 17:03 |
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Ladies,
As a 'veteran' (ouch) on the MP, I can assure you that we used to have a lot more humour on the message board. But as more and more very sick people needed more and more help, there just wasn't time for chit-chat any more. And we're conscious that if the medical world is watching to see the outcome of this clinical trial of the MP theories, we need to keep it fairly circumspect.
The immunopathology will likely be more severe, have more intense symptoms, added symptoms, pain and weirdness in places and organs I've never had a problem with (because of the bacteria existing at sub-clinical levels), etc.
It's true that herx can turn up in new places, but I certainly haven't had worse pains than pre-MP. Besides, there's such a difference between temporary pain that signals you're healing, and long-term pain that means you're gradually deteriorating. It's productive pain, like (as you say, Odette) having a baby
I read Aussie Barb's experiences and am in awe.
Aussie Barb was an exceptionally ill member to start with. She is indeed awesome in her courage and fortitude, but very few members have had to go through anything like her trials. There are plenty like me who kept working, part time or even full time, and who were able to lead a pretty normal life after a year or two.
No human contact, therefore no warm feelings or endearing qualities to help me feel good about it.
In the old days of http://www.Sarcinfo.com the moderators spent a lot of time and energy being warm and persuasive. Result? They got themselves so many sick folk to guide through the MP that they've hardly been able to raise their heads from their keyboards ever since. And they're all volunteers with families and other commitments.
So now they leave you to do a lot of the research for yourself (all the info is now out there), and you have to make your own decisions. (If you're looking for super-abundant warmth and enthusiasm and promises of rapid easy health, you could try the snake-oil websites  )
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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expate
Member
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Posted: Sat May 3rd, 2008 21:12 |
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Thank you, thank you, thank your for all your replies. I will be more careful about using others' time. I will continue reading and learning more. The sites go in so many different directions and have so much information. Often I catch myself reading something I've already read (yes, I do have "mark posts read" checked) but find that I get more out of it each time. Prior knowledge helps comprehension so the more I know and understand, the greater my potential to learn and undertand more. Then who knows, I may be able to help ease the burden on you overworked folks.
Dr. Marshall, I have yet to check out any videos. I will be ordering the conference DVD and will definitely check out the URL's provided.
Karen, do you have a definitive start date?
Knochen, thanks for explaining your position more. I'm sorry if I got a bit defensive. I've got to watch out for that.
The caftans should work. I plan to get one of those wicking black shirts to wear under if neccessary and to "seal" the neck with a scarf if needed.
Thanks especially about the info on light. I've been trying to think about how to black out my house and it will be quite hard. I think I can have a couple rooms that will be quite sealed from light, but that I will just take outdoor style precautions inside as needed. I shall be quite elegant in my caftans. Your info on indoor light makes me feel a little easier on that front.
And thank you for the encouragement. I almost think it's worse having to wait to start, but as I try to imagine following the MP perfectly in Greece and CA, when there will be a few unknowns about my situation (exactly where I'll be staying, etc), I think it prudent to wait.
Julia, thanks for the reassurance on the pain stuff. I can be a bit of a ninny about certain types of pain. I'm actually looking forward to this process in a weird way. It will be very interesting to see what "comes out". And I have seen that some people pace themselves if they are having too much IP or just need a break.
I don't need anyone high level to answer this, but is there a thread or any one who can tell me what "sx" is? I think I've figured out that "abx" = antibiotics. I know Rx is a prescription medication, but I can't quite figure the "sx" one. I think it means symptoms, but I'm not sure.
Thanks,
Odette
Last edited on Sat May 3rd, 2008 21:19 by expate
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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expate
Member
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Posted: Sat May 3rd, 2008 21:19 |
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Knochen wrote:
I agree that one of the next steps is to see what happens when people start the treatment earlier when they have few symptoms. I think there is great potential there. But people who's lives are only minimally impacted by disease are going to be more reluctant to make big changes in lifestyle, and there's the real rub.
I heard something really interesting on the radio about this but in relation to economic psychology. It was something about how people make poor money decisions even when they know it's the worse of two options. I'll look to see if I can find an explain better because when I heard it, I thought how well it applied to people's actions re. their health.
Odette
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Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08. Covered up, but no facemask any longer. NoIRs. Home low light.
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 556 |
| Status: |
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Posted: Sat May 3rd, 2008 21:30 |
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Odette,
It would be nice if everyone was high-functioning. Easier to fix possibly. But it seems those who have a well tuned sense of diminished quality of life seem more motivated about required medications, avoiding D, being carefuly about food and light, and remembering to read new data points carefully added by the research team.
sx = symptoms
See Medical Abbreviations
Plus link to medical dictionary
Internet Acronyms are also used by many who chat on the web.
You will find people generally start the MP with long posts and as they get well, posts get shorter and more efficient.
Best to you Odette--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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