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ellie
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| Location: | Geelong, Australia |
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Posted: Wed Jul 1st, 2009 07:50 |
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I have been on the MP for 15 weeks and am still on the Benicar only because I still have severe IP. I have been reading the success stories to encourage myself through the process, I have CFS so those are the stories I have been reading. What I have noticed most is that apart from a few young poster people, most people seem to be on the MP for very long periods of time reporting improvement of symptoms but not recovery. Many success stories still sound to me like they are very debilitated after long periods on the MP. I would really like to have an end goal to work towards and know that it is possible for me to recover and have a "normal life"
Is there an expectation that at least the majority of people with CFS who follow the protocol strictly will be able to recover a "normal life" and actually get off the protocol?
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CFS/fibromyalgia/IBS/osteopenia/vitiligo/insomnia/1.25D=51.6pg/ml D=36.8pg/ml after 1yr on Vit D started MP 17/3/09
Was taking Ben 40mg Q6hrly now reducing with 40mg at night 20mg for the three other doses
Aug 09 Vit D=36.8pg/ml
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eClaire
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Posted: Wed Jul 1st, 2009 20:41 |
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Ellie, I do not pretend to know an answer to this, but I will tell you what I think.
I don't believe that CFS folk began to do the MP until around 2005--that's only four years ago. Given that it is likely, as T. Marshall says, that in general we are more systemically sick than most, then I would expect that recovery would be somewhat protracted (except for those poster folk you mentioned).
My first two years on the MP were certainly an indicator that I was and still am one sick puppy. However, I am seeing improvements and I think I see the light at the end of the tunnel. My alternative was to die, and so as long as I continue to see improvements, I'm sticking.
Am I absolutely certain that this is the right choice? No. But I'm following my gut and my gut says to stick.
As for me, I "see" myself returning to work in 2013. Whether that happens or not is another story. In the meantime, I try to enjoy each day and the improvements I've managed to experience thus far, and I've resigned myself to the idea that this is going to take a while. (And not be so attached to outcome.)
Like I said, the beginning was incredibly rough for me (but luckily no hospitalizations) and while we were consistently told the MP is not a race, for some, if not many, of us with CFS the recommended pace was too swift. Somehow I managed to survive, have experienced some improvements, and am happy to be able to slow down my IP some to further improve my quality of life.
It's an experimental protocol. We're all risking and betting here. I hope those of us who have had CFS a long time experience the sort of recovery of functioning that others report.
Hope this helps, Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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paulalbert
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Posted: Wed Jul 1st, 2009 21:15 |
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In case you haven't seen these, Ellie:
http://mpkb.mp-dev.com/doku.php/home:publications:mp2008_survey
http://mpkb.mp-dev.com/doku.php/home:patients:mp_duration
Paul
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ellie
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Posted: Wed Jul 1st, 2009 23:04 |
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Hi Claire I appreciate your honest response and I admire your capacity to take one day at a time, it is something I am working on to try and do better myself. I guess though that being able to feel relaxed about taking 5 or 10 years to get well depends on your life circumstances. I think people coming to the MP site will be reading a lot of material through the filter of desperation to find something that works and it actually takes quite a bit of reading and sifting to find the simple fact that on the whole people with CFS are not cured after long periods of time.
The latest phase 1 guidelines include a chart of the duration of phase one, what that communicates is that for most people it last 50-100 days with an average around 100 and a very small percentage of people taking up to a year, presumably people with CFS have skewed the duration time upwards but are still part of the calculations. It does go on to warn that some of the most seriously ill patients can take several months to stabilize on olmetec (as has happend with me although I would not have categorized myself amongst the most seriously ill). I think information regarding the fact that CFS patients on the whole can expect improvement but not recovery after 4-5 years on the protocol should be included in the guidelines so that people can make more informed decisons.
Having now sifted through a lot of posts I think a lot of people would agree with me. I understand that all the moderators are volanteers and I very much appreciate the support that I have had. I can also understand how frustrating it would be to always be confronted by questions like mine. It would also be difficult to have to answer people who sometimes get quite aggresive but I think you wouldn't be having to continually answer these sorts of questions and you wouldn't be having to deal with peoples frustration if the initial guidelines were clearer regarding aniticapted recovery times.
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CFS/fibromyalgia/IBS/osteopenia/vitiligo/insomnia/1.25D=51.6pg/ml D=36.8pg/ml after 1yr on Vit D started MP 17/3/09
Was taking Ben 40mg Q6hrly now reducing with 40mg at night 20mg for the three other doses
Aug 09 Vit D=36.8pg/ml
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Chey
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Posted: Wed Jul 1st, 2009 23:37 |
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Hi,
I was exhibited symptoms, Herx, and then sprayed with a deadly insecticide. A direct hit. I became so bad that I had no life but extreme pain for 15 years. I spent most of that time in a dark quiet room with no colour to hurt me. I would expend more effort than climbing Everest (and I had been extremely athletic) to just make it to the couch so I didn't spend all my life in bed. I hate sleeping. 
I had started to show improvement the past few years. I had thought I would never walk again except in tiny breathless steps... etc.
I am sure many people here know the story first-hand.
I started to show some improvement immediately on the Olmetec. Nothing earth shattering, just some little thing inside said "yes".
I am taking mino now. I started on May 8, 2009 with the Olmetec. I rushed on to mino though they tell me there is no hurry. There is for me!!!
I have to avoid the sun, but that's been the story for nearly 20 years....
I know there will be an end. I know because that's what I need to know. That's what makes me smile and appreciate that for more than 100 years, forever... We are the first people in time who can have more of a life agan. Think of that. Every day. Every time your smile fades think of another human being who did not have this option.
Keep smiling. It may not beat this thing by itself but like not taking this treatment... The option is not acceptable.
Good luck Ellie!
Chey
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ellie
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Posted: Wed Jul 1st, 2009 23:51 |
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Thanks Chey always glad to hear about people feeling better. I had displayed symptoms after a severe infections and after many months seemed to recover until I had a flu injection which made me very sick for three months and have not been the same since, does your head in being exposed to things like pesticides and flu injections and ending up debilitated. I appreciate the encouragement Ellie
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CFS/fibromyalgia/IBS/osteopenia/vitiligo/insomnia/1.25D=51.6pg/ml D=36.8pg/ml after 1yr on Vit D started MP 17/3/09
Was taking Ben 40mg Q6hrly now reducing with 40mg at night 20mg for the three other doses
Aug 09 Vit D=36.8pg/ml
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ellie
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Posted: Wed Jul 1st, 2009 23:53 |
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Thanks Paul Albert the second link in particular is a realistic summary of what can be expected. I know that sometimes what is need is encouragement but sometimes I think its good to know what you are up against in order to be able to better deal with it Ellie
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CFS/fibromyalgia/IBS/osteopenia/vitiligo/insomnia/1.25D=51.6pg/ml D=36.8pg/ml after 1yr on Vit D started MP 17/3/09
Was taking Ben 40mg Q6hrly now reducing with 40mg at night 20mg for the three other doses
Aug 09 Vit D=36.8pg/ml
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Chey
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Posted: Thu Jul 2nd, 2009 00:15 |
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Ellie,
I lived with mind numbing head pain for more than 13 years. Non-stop. I can tell you that perfumes are worse than diesel exhaust, esters both. I couldn't have soap near me and if someone washed their hair with anything but a couple of products... It was as if there was a hot branding iron with a double blade being stuck up into the back of my head ...
I lived isolated from other people, and I am from a large family and gregarious by nature, for more than 12 years.
I never believed that pain would end and I would have killed myself if I had had the physical strength to do so.
I still believe in euthanasia.
In a word: YES
Everything hurt me. Dish detergent and ... I would hurt before I had time to realize there was something near me. I never had a sensitive nose before this and I hope I don't when it's all over.
And it will be over. I will not allow myself to think otherwise. This is a battle of drugs and bugs and my money is on the drugs. I'd be a loser to bet otherwise.
Everything hurt. I moved to a remote town for clean air and water and even here I was bed bound.
A good day was where I only felt worked over with a blackjack and I could muster enough energy to lie very very still... I had practiced advanced yoga all my life and wondered how other people could stand it as even so ...
I lived on the edge of screaming with the head pain but I couldn't scream because whispering hurt.
I loathed people who had any scented product on them.... etc.
You will get better.
If you don't. You can come to my house and beat me up.
I know it. I just know it. Not knowing it isn't a place you should go.
One thing I always tell myself...
If I am strong enough to doubt or complain than I know I am getting better.
It takes energy.
Friends ask me how I can be so strong and positive...
"Laugh and the world laughs with you.
Snore and you sleep alone."
Be well Ellie.
Take back what you can control as you can control it.
First that you are not alone and that people care about you personally.
Second that no matter how alone we think we are, if it is happening to me it is happening to someone else so I am never alone.
Third, if they can do it so can I.
The wonderful thing about yoga is that you never push to hurt and you never compete with anyone but yourself. You make the left side and the right side respect one anther. Real strength is in balance. You pay attention to the weakness not the strength. You make the weak side your focus and help it become as strong as the strong side.
If your weakness is doubt then you might like to exercise to make it match your strong side. Believe in yourself. The drugs are just drugs. You are in charge of your mind.
I know what it feels like to have so much "brain pain" that thinking is impossible, for years. To puke trying to have the simplest thought.
You can type and you can read so you are way in front!
You decide. You aren't alone and you are just as capable as any of us.
So what if it takes years?
What's the option?
Is it acceptable?
You decide.
Good luck hon.
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Chey
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Posted: Thu Jul 2nd, 2009 00:23 |
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Last edited on Thu Jul 2nd, 2009 00:38 by Chey
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eClaire
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Posted: Thu Jul 2nd, 2009 00:30 |
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Chey, to protect yourself from spam, I suggest that you edit your last post and PM that information to Ellie. It's up to you, but that tends to be standard operating around here: using PM's to share email info that is.
Claire
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38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Chey
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Posted: Thu Jul 2nd, 2009 00:41 |
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Last edited on Thu Jul 2nd, 2009 00:41 by Chey
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ellie
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Posted: Thu Jul 2nd, 2009 01:09 |
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Chey thanks again I also can't stand smells but certainly not to the extent that it effects you. I also used to do yoga and I still meditate when I can, I appreciate your advice you have great spiritual strength to maintain your attitude with your extremely difficult experience shinning a light for me to follow Ellie
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CFS/fibromyalgia/IBS/osteopenia/vitiligo/insomnia/1.25D=51.6pg/ml D=36.8pg/ml after 1yr on Vit D started MP 17/3/09
Was taking Ben 40mg Q6hrly now reducing with 40mg at night 20mg for the three other doses
Aug 09 Vit D=36.8pg/ml
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Chey
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Posted: Thu Jul 2nd, 2009 02:27 |
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That's really sweet Ellie.
"If I can see further it is because I am standing on the shoulders of giants."
That's credited to Darwin but apparently 1000 years older.
I think that your ability to thank me is also your ability to be so strong to see outside yourself.
That's what is important isn't it? To see further. To look ahead while appreciating the past.
Perhaps I was just born corny.
Lots of love,
Chey
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B dave
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Posted: Fri Jul 3rd, 2009 11:30 |
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Hi,
I have CFS since 16 years, and have been doing little better by taking lots of herbal medications. I am in the process of starting my MP. Could any one tell me if I will have to leave those herbal products soon, or could continue until feeling better after started?
Thanks.
B. Dave
Last edited on Fri Jul 3rd, 2009 11:31 by B dave
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Bdave
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eClaire
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Posted: Fri Jul 3rd, 2009 15:09 |
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If you go to the main site and read what there is to read under the required reading, there is a link regarding supplements (also in the ABC's). While some of the recommendations on other links may be a bit outdated given the NEW Phase 1 guideline, I do not believe the supplement link is outdated. For the most part, you are not considered to be doing the MP if you are taking most supplements (generally, only supplements allowed are those to assist you with a lab documented deficiency).
Hope this helps, Claire
____________________
38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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