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Deedee
Member
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Posted: Sun Mar 7th, 2010 03:41 |
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| Hoping you feel better very soon.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
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Posted: Sun Mar 7th, 2010 03:53 |
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wishing you better from Aus
also
(am about to rest up myself)
S
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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xenaspower
Member
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Posted: Tue Mar 9th, 2010 17:26 |
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hi all,
Ok so right now really freakin out.I was so exhausted that I think I doubled my benicar and hoping that someone will help me.I have emailed the moderator online(knochen) and have been waiting for a reply now .I am really scared and don't know what to do.I took my benicar Q4am then at 8am but the pill holder I have shows that my noon pill is gone and it is only 10am,please someone respond,I am really scarde right now.........
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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xenaspower
Member
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Posted: Tue Mar 9th, 2010 19:03 |
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ok so just found out it is ok if I double dose but it sure freaked me out at the time.Anyway I will be putting my nite meds in the living room as I have pain meds that can't be doulbed I will really be in trouble.With the meds in the other room I will be more coherent to take them.thanx everyone for the quick response.
taking now beni Q4 and mino 50Q48.I have been experimenting with the mino as it has been kickin my butt.I think I have found my place.I tried the lower doses and that was horrible,tried the higher at different intervalds and I feel this one now is herxing good but not to the point of panic atacks and all the sweating and sinus drainage.
I have been here now for a few days and am having the sweating occasionally with other bad smells(vaginal)and the feeling of greasey skin,no matter how much I bathe I still feel not dirty but just unbathed.Minor sinus drainage and kidney pain,also having lots of flatulents and a looser stool than I am used to.All in all feeling that I am getting somewhere without the extra discomfort.So will be sitting here for awhile thank god I finally figured it out,the thought of just doing the beni and not getting the blockade was a little depressing,but this just goes to show that stopping the mp and then starting is not a good thing.
It is my intention now to never get off the beni again no matter what it takes as it just makes it harder to try getting the blockade going and finding where you are sux and causes unnecessary discomfort,so my advice is to keep going and not let anything have you stop.I had such a hard time with the doc wanting me to start and stop so many times this last year for the purpose of infection and how he felt that it should be treated,tho yes he is a doc if he would look at the site more he would see the alternatives.I am thankful my other doc sees this and discusses it with him now.
Al is as it should be and hopefully with the lung tests showing my great progression just this last year he will melow out.Good healing all and heehaa I am herxing again,die you little buggers die!!!...,B
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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Deedee
Member
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Posted: Tue Mar 9th, 2010 22:14 |
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I'm sorry that i wasn't around when you posted to tell you I have done the same thing and survived to tell the story. 
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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xenaspower
Member
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Posted: Tue Mar 16th, 2010 06:30 |
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deedee,
love the thought but I make it a habit not to be sorry unless I've done something,so please it's ok,I would have you sorry for nothing.
So at beni 40mg Q4 and the mino Q48.Just feeling dirty all the time,having to wash my hair all the time it always feels so dirty with the sweating and all.Having some sinus drainage off/on. I feel I have no memory right now even short tem is shaky,so studies at school are hard.It is even hard having a discussion of any intelligence from the brain fog right now.My belly stays swollen with gas. The one good thing is that my lungs are working way better and are having phlegm in the morning which is wonderful t0o finally have that working so to get it up instead of feeling as though I am drowning at times,and when I get up and walk it is even more productive,really am lovin all the progressing.
So going into presence right here and now........, I breathe easy moment to moment knowing that there is but One Power,One presence,One Conciuosness that I AM. I know that in this One power there is No dis-ease but great peace,there is no lack but great abundance of all that is good.
I know that the whole of the kingdom is right here within my consciousness,and all that it contains is here also within me waiting for my acceptance of all that it has to offer,and I choose to join with it co-creating in my life all that is for me to do.I realize that it was my thinking that wan't in alignment with the truth of my self that caused the dis-ease and that I only need to choose to know the truth of my self and I do that now,here in this and every moment trusting that my truth of health shall continue to progress at the alarming ,miraculous rate that it is healing.
I know that my mind is not of the "carnal mind"but of the divine One.The carnal mind can no longer find an inlet or outlet thru me,since I have chosen to follow the true divine being that I am,knowing that I am One with all that is,and because I do this conscousely,I have all that is as mine. I am the inlet and the outlet of all that is divine,there is no "me",that which the world identifies as "me"is God appearing as me,the allness and the life of God made individually manifest.
The carnal mind of illness and lack may present itself to me but I am, NOT HOME TO IT. The so called theories,opinions,and beliefs which make up the carnal mind have no power,I am proof of that power in my healing. I am proof that there is only one power and it is not of the mind of man but of the mind of all that is,was and shall be,and because of this belief my life is now guided and governed ,spirituqlly fed and spiriually lived for indeed I am not this body I am the power that governs this body.
I am one with my Creator and it is the qualities of the Creator that constitute my qualities.The intelligence of the Creator ,the love,the wisdom and the grace finds expression thru meand as meto all of this world,for I and the Creator are one.
with deep gratitude I live on this path released from dis-ease,self hate,attack of my brothers and sisters,and distruction of my planet home,and so it is amen.
Good h3ealing all,B
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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xenaspower
Member
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Posted: Tue Mar 16th, 2010 06:37 |
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sorry about all the copies my screen kept dropping and then getting slow,B
Admin: extra posts all 'cleaned up' for you.
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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xenaspower
Member
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Posted: Tue Mar 30th, 2010 05:59 |
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hi all thanx for the cleaned up posts
doing the mino at 50 Q48 and Q4 on the beni. having lots of extra pain in joints and lots of drainage just about everywhere,but gonna sit here for awhile. really hurts sitting at this desk chair so gonna go after this weather settles down in a day or two I will write more,battling a little depression,but I know who and what I am ,A blessed child of god and thank god these days are days are far few and in between,good healing all,B 
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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Marysue
Moderator
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Posted: Thu Apr 1st, 2010 06:15 |
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Bonnie's note sent by PM:
hi xenaspower here,had some sun exposure sunday,monday and am right now feeling really aprehensive with chest tightness,starting to panic. I have a neighbor sitting with me please help really frightned.
Doing 50mg minoQ48 and beni 40 Q4.really scared... Having sweating palms, under the arms and lots of panic.
Bonnie,
I'm sorry you are having a challenging night. Have you tried 20mg sublingual Benicar???? This is your best first-line of defense when symptoms are intolerable.
I posted your message here on your thread so that others can respond and provide support if available and have been through similar experiences.
Keep us posted.
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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xenaspower
Member
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Posted: Thu Apr 1st, 2010 07:18 |
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hi marysue,
yes I tried the 20 sublingually in between the regular dosing and it didn't help. My neighbor asked me some questions and I might have found a couple causes for such a re-action. My doc won't give me valium for the heart palps I have every so often and I get ativan 1.mg instead.Here lately I have been using them more than not and I don't have any as I didn't bother getting more as they really didn't help.My neighbor said that they can cause panic attacksif you take them long enough.I have been taking them for a month but not everyday,my doc only gave me ten days worth with no refill,I didn't plan on making them a habit.
Neighbor says that it can make it worse just by using them in the first place,so I looked them up and found they are very addictive in a short amount of time and if you take more than 2mg a day for a month then stop you can have a seizure!!!! What the heck is up with that?
I am so fed up with doc's.This makes me even more determined to get a healing.I was getting sun exposure but was covered in my stuff sunday/monday because I went to see a man who healed himself from a highly infectious disease by doing the kind of affirmitive prayer that I do,and I found a phone number to call for healing prayer of this kind if anyone would like the number.
Anyway it is passed my bedtime but I am wound up and having to wear my darker outside glasses inside as of late to as that causes the feeling of wide eyeness.
Yes I have become very light sensitive as of late also. My hands and feet are freezing and hands very clammy,cold. From now on I will be asking more questions about the drugs I am givin to help with my anxiey due to the herxing. It is very scarry when you are alone and you start getting stiff lung,inhalers don't help with that type of function.Anyway feeling wqay better,s guess I will go ahead and tell the truth about myself and everybody else while I feel better.It is best to do these prayer treatments especially when you are wrestling with the fear of the carnal mind,as my true christ conciouesness needs to correct the negative thoughts I am denying here and right now;
God is;I am. I affirm now to bring to concious truth and rememberencethat the father and I are one,that the place where on I stand is a holy place,all that god is I AM,for it is written that all that I have is thine.
Therefore I have peace,stillness,calmness of my god given mind.Here and nowAll that the father has is mine,wisdom,life lovepeace confidence courageserenity and deep abiding joy.I need not struggle physically or mentally for these.I need not go to any place to find these because here where I am God is- I in God,and God in me.This is the truth about me and all of Gods creations.For God is one,we are one All is oneness.
God in the midst of meis my life,the bread on my table,the meat,the water and the wineGod is the health of my countenance.Even if I make my bed in hell,even if I walk thru the valley of the shadow of deathI and the father are onelife nor death can seperate me from the life that is God,the love of godthe awareness of god,the presenceor the power of God,this is my hidden manna andsd I shall rest in it and believe always with deepest gratitude for the knowlegde that I am not alone,and as I know this to be true,so it is amen.
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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Marysue
Moderator
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Posted: Fri Apr 2nd, 2010 06:29 |
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Bonnie,
Another option you should consider trying is the mino every 24 hrs. If that doesn't help enough, try every 12 hrs.
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Aunt Diana
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Posted: Mon Apr 5th, 2010 03:50 |
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xena's power:
I have just read your thread for the first time and feel compelled to write you of my own experiences.
I have been using ativan for years, to help when I have palpitations or nervousness or trouble sleeping. And yes, it's probably true that one builds up a resistance to it and needs more as time goes by. I currently still need only one tablet to quell anxiety, sometimes two.
I think it is a shame that we let our fears, compounded by the fears of well-intended friends, who really do not understand what we are experiencing, to get between us and our health.
It has been 40 years that I have used valium or ativan for relief of anxiety or to be able to sleep. If I am not addicted and can still go with or without it as needed, I really would like to minimize your concern.
As I progress through the MP I find my need for these meds is less and less anyway.
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eClaire
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| Joined: | Thu Oct 18th, 2007 |
| Location: | Virginia USA |
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Posted: Mon Apr 5th, 2010 04:41 |
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My experience with Ativan is more like how your neighbor describes it.
I started on it to help with sleep at night. Just 1mg at bedtime. Within months I was beginning to have panic attacks right before bedtime. I'd never had panic attacks before so I knew something was up with the Ativan. Perhaps some people are more sensitive to the addictive qualities of Ativan. To get off it, you want to get advice from your doctor as to how to wean off of it. I didn't. I didn't research it at all; I stopped it cold turkey, which I later found out in my reading was a dangerous thing to do. While everything resolved without some of the disasters you may read about, for about three weeks straight (for some people recovery from Ativan can take longer), I felt as if during every waking hour that I was about to give a speech to 5,000 people when I've only ever given a talk to about 200 people before.
I think concern over Ativan as a possible contributor to anxiety, given my own experience, is a valid concern. On the other hand, I've had no trouble with Valium or its generic... except that those drugs made me more anxious the first two years on the MP. So for the first two years, anti-anxiety meds were of no use to me, but now I can take a generic valium without problem.
You may experience intense anxiety on the MP and the Ativan may not factor in other than perhaps whether it is helpful or exacerbates the matter. Anxiety is a fairly common IP.
Having had exceptional anxiety initially, I have the following possible suggestions for managing your Anxiety IP--some involve your meds and some involve other ways to cope.
1. I noticed that you jumped from 25mg Mino to 50mg of mino because you felt better physically. Question: Did you experience worse physical symptoms on 25mg but lower levels of anxiety? If so, you might want to go back to 25mg Mino and live with the physical symptoms there before going on to 50mg Mino.
If you do not feel worse right toward the end of the q48h--that is, if you feel worse initially and it stays bad the whole time or gets slightly better as time goes on--, you may want to lengthen the schedule between Mino doses (not shorten them). If you feel worse right before your next abx is due, then you might benefit from the shorter schedule suggested. (When I was on two abx, I found that I had to take them twice a week. My body could not handle q48h. Even now, three years in, I am still on abx MWF... q48h is still does not work for me, as my IP just builds and builds and builds.)
2. If you don't need 40mg Benicar q4h for organ protection, you might want to try q5h, as for some people initially Benicar is turning on symptoms the more you increase the dose. If you need q4h for organ protection, then you try your best to get there and stay there.
3. What sort of IP were you having on Benicar alone? Was it sufficient you think? (Meaning was it just this side of tolerable?) If so, you might want to do Benicar alone for a while at the organ protective dose until you think you can better handle the abx.
4. These are non-med suggestions:
* If you have not tried eating apples with the skin on it to slow your IP, you might want to give this a try. See the contents about this link and chlorogenic acid: http://mpkb.org/doku.php/home:food:chlorogenic_acid
* Apples are also crunchy... sometimes eating crunchy foods can help relieve anxiety. There might be other healthy crunchy food you can eat as well to help you get through the worst periods.
* When I was incredibly anxious, I listened to books on tape (nothing scary or too overly dramatic) and good talk radio (e.g., "This American Life.") AND I focused on my breathing. I particularly liked listening to this one tape set I had about maximizing brain use over and over and over again. Probably because I found the speaker's voice soothing. I found if I listened to the spoken word while focusing on my breathing, I did not notice the anxiety. However, at times, doing that felt like a full time job... for me, there was no getting around it.
* Also, pay attention to light exposure. If you calm down in a totally dark room, you may be getting too much light in your eyes (even if you are staying out of sunlight). Take the precautions you need not to contribute to anxiety caused by light exposure.
I hope these ideas help, Claire
Last edited on Mon Apr 5th, 2010 04:51 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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xenaspower
Member
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Posted: Mon Apr 5th, 2010 20:47 |
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thank all of you sooo much for all your wonderful suggestions. I noticed thru my old threads that before I used the mino Q12 and was sailing thru so am going to ask my doc to switch my mino to twicw a day but will try the once a dqay mino first see if that helps.
I was on just beni for awhile till recently and was fine.I really believe now that the med ativan had alot to do with the horror I felt that nite and the next one.I talked to my doc and have come to the conclusion for my sleep and anxiety I feel I will use my tried and true methods of this wonderful tea I found in an asian store called simply "relaxing tea",within a few minutes I am ready for bed.I am also going back to my other herb that have used for years cannabis,but I measure this out in a oatmeal cookie.Neither have any chemicals and are more effective than any med and non-addictive.
As of right now I am weaning off the ativan,thank goodness my doc had the smarts to not give me a dose that would cause me to have seisures during this time(if you take above 3mgday for a month and stop you can seisure) I am weaning from 1.mg tabs,taking a whole then half for a week then half for a week so on....
My real blessings are my peers here on this site thanx again for all your advice and support.
when I did the mp back in 2005 for that year I never had problems like this but it shows you if you don't have to stop and start then my advice is don't.
And yes I am very light sensitive at this time,and it causes sleeplessness if I don't watch myself.My muscles are taught and I sweat constantly.Any sun exposure hits hard with in a day.Fir this reason I am going to try the mino everyday and I know it will help.
I do the beni Q4 for the kidney protection,they are always aching and I can't imagine what it would be like if I didn't have it,thanx again.
So now I am at Q4beni and moving to Q24 on the mino,good heaking all,oxoxoxoxoxooxoxoxoxoxoxoxoxoxoxox,B
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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eClaire
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Posted: Mon Apr 5th, 2010 23:57 |
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I'm glad you reviewed what's worked in the past and have a plan of action to test.
Hope it all works out!
Claire
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42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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xenaspower
Member
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Posted: Wed Apr 14th, 2010 23:58 |
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hi,
doing beni 40 Q4 and mino 50 Q24.I am doing fine at this point.The sweating is minimal,light sensitivity is also but having lots of gut problems and moderate depression with crying.I know this is part odf the mp so am trying to keep cheerful even tho I don't feel that way.
I am still doing my affirmations as I know that the truth of my whole being is universal health ,love and conciousness.Nothing and no-thing will deter me from my beleifs and I did a pulmonary eval yesterday as I am starting a 13 week pulmoanry course to help breath more effeciently ect. I am looking forward to leqrning these things,anything that propells me forward is my moto.good healing all and remember the truth of all of us,we are powerful beings but our bodies only know what we tell it we are,so do affirmations everyday to your truth underneath the dis-ease that we put on ourselves for years,it can be reversed and new beliefs can be replaced.
I saw a guy named Terry Mcbride at my spiritual center,he healed himself by doing the same as I am doing.We are the governors of our bodies not the other way around,we are powerful beings that gives this body life with the co-creating of our creator.Always know that the bad days will pass as they always do and let the body do what it needs to do but hold close that you are in control,for you are,ask and ye shall recieve,also read phlil.1:3-6. It is our creators good pleasure to give us what we want thats how we got sick in the first place,all the thought s of negativity we put on ourselves but it works the other way also.I know it is hard to hear we caused our condition,but if you think on it you will see the truth of it as I have and now I am healing faster than the mp can do on it's own as in the begining,I came off oxygen and wheelchair within a year.
I know and believe that the affirmations with the mp will absolutely have me healed in no time,my test show that some of my lung functions are normalizing.Make your own reality as you have only do it now for peace,harmony,wholeness,know that these things are what your in truth are,for that is the truth.There is a whole new world out there filled with beauty,love acceptence balance,but you,WE must come together in conciousness to create it. As we have created this world we can with co-creating with our creator come back to out truth,wholeness.
Good healing,B
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xenaspower
Member
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Posted: Thu Apr 15th, 2010 00:08 |
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| ps just wanted to add that a woman named LOuise Hay has put out a book that helps to understand why it is our bodies get sick thru our thoughts,as thoughts are things.She is a psychologist who worked for years with the ill and found that many of the illnesses in our bodies coincided with parts of the body,like if you have back problems it could be from letting others use us or if you have kidney problems it could be from not being able to process(filter as the kidneys do) why others treat us badly,or letting go of the anger.Check it out it is very informational in understanding why parts of the body are affected,good healing B
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xenaspower
Member
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Posted: Mon Apr 19th, 2010 01:30 |
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hi,
ok so woke up today and the trees have been in bloom for about 3 days now and it is heating up here in redding.I woke to a little sore throat and runny nose with lots of short breath.tried to use extra beni forst buit am really thinking it is allergies.I just looked up allergy and am sending my sister to get me benadryl.I saw that it said not allergy shots but that the benadryl or antihistimine would be ok.
I am doing the beni 40 Q4 and the mino 50 Q24. I am having my sis get the benadryl that is a gell cap with no dyes and is liquid as the other is full of dyes red and yellow.Thank goodness we can find this in gell form with no dyes anymore.
I am sure this is the case and not herxing as my sister even mentioned that she was feeling blah from the change in the weather and the burst of all the trees blooming.
Other than that I am doing fine,I want to nip this as if I don't with a little sore throat I sometimes end up with an infection.I know my body well enough to know this.
Last night before I went to sleep I usually take a little walk to calm myself to the end of the parking at my apt. building and when I came back in within 20 min. I started to cough with phlegm,but I was happy that it was coming up,otherwise I feel heavy in the chest.I guess spring has sprung Good healing all,Bon
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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xenaspower
Member
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Posted: Mon Apr 19th, 2010 02:10 |
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ps,
about the antihistamine,all my sister could find was the childrens dye free.It has extra stuff in itthat adult does not,which I see is sorbitol and such but the dose is half the pills.Because I don't use this all the time should I try the childrens dose forst (12.5) or due the usual dose for an adult of 25? I have just taken a half dose to see if it helps and wait till the next dosing time or if I get a response from someone here.
the other ingredients is;anhydrous citric acid,carboxymethylcellulose sodium,flavors,glycrein,purified water,saccharin sodium,sodium benzoate,sodium citrateand sorbitol solution.
I know the saccharrin and sorbitol are false sugars and she got it also because I am diabetic. I have not been able to find anything in it to contain with the mp so if I am wrong please someone let me know so that I can stop tis and get another,I will leave my computer on and wait to see if I get a response tonight thanx and good healing ,B
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sarcoid/1997 irretractable pain sarc nodes all body diabetic| oxycontin benicar ambiencr baclofen synthroid albuterol inhaler spiriva premarin singulair relafen prn metformin| MyStory| 25D soon|
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Joyful
Foundation Staff
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Posted: Mon Apr 19th, 2010 04:08 |
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Hi Bonnie.
Sorry about the allergies. 
I'm not a medical person, but if it were me, I would try a children's dose first because I always try to use the least amount of medications that will work. 
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