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inuk2600
Member
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Posted: Thu Sep 10th, 2009 18:34 |
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| "tapping" should always be done consensually.
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xenaspower
Member
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Posted: Sat Sep 12th, 2009 19:28 |
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   a-yaaaaaaa and a weeeeeeeeeee
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xenaspower
Member
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Posted: Sun Sep 13th, 2009 14:35 |
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| hi this is bonnie,xenaspower.Went to the er last nite have major bad bronchitis to the point of them giving me a xopenex treatment for 1hr lungs feel full swollen and clogged,plus the digestive thing is bad also anything that I eat gives me gas so bad I can't breath and I feel as tho I will literally bust,I have only been able to do the benicar,I am off totally of the mino it is just to much and my ankles are ereally swollen with extra water,have any suggestions,don't know if I can do this this time around whats happening,the time before on the mp wasn't like this!!!please reply asap
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Joyful
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Posted: Sun Sep 13th, 2009 15:31 |
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I'm sorry you are going through this Bonnie. 
Does your doctor know you are in distress?
Are you able to get someone to keep 'watch' over you and make sure you are getting your medications and enough water?
How often are you taking the Benicar?
Are you using any sublingual?
Do you have access to guaifenesin/muscinex?
Sedona posted this recently...
The one that has always done me right every time is Mucinex 600mg; extended release. Blue line over the word expectorant. It says 12 hour which I assume means you want to take it every twelve hours but in the beginning when I first started the MP a gentlemen indicated that he was taking it every 6 hours. I was producing far too much mucous to take it every twelve hours so I tried his method and it worked.
My husband recently bought six boxes as I have a tendency to go into denial and not take it when I need it after finishing a box. When the bacterial die off lessens then I am able to fall back to taking it q12h. Oh by the way, if I am producing a lot of mucous and I wait too long between taking it, I do find that it take a couple of tablets before I feel comfortable again.
But here's what is important: I learned that it's EXTREMELY important to drink a lot of water with Quaf so that your system can flush the thick goo. Quaf makes expectorating far easier but water and lots of it is the key.
My comfort level was not reached with the Quaf when I didn't drink enough water to help it and my body do the job. Even when I get comfortable (mucous) I find I need to drink lots of water - it makes breathing easier.
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xenaspower
Member
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Posted: Sun Sep 13th, 2009 18:06 |
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hi joyful,
yes I have been taking the extra strength and am on plenty of fluids.It is very hard for me as the sarc is pretty bad everywhere for me I waws not one of those that it just did a little damage so when this kind of thing happens it's bad.I have had a colostomy also before and it was because the sarc leasions caused thelarge intestine and part of the colon tom rip in several places,this was in 1997 and it was how I found out that I had sarc in the first place.When I did the mp back in 2005 befoer I became homeless I was on oxygen it was so bad but I never had symptoms like this before.I am sure it has alot to do with the fact that the nerves in the intestine are fading,I have recently had to start taking colace with everything I ate so as not to get bound up from the inflammation
My dilemna now is the fact that it is all so inflammed that nothing want s to work and the er docs keep trying to slip me prednisone to get relief,usually the non steroid med tordal knocks it right out but not as of late.yes the docs are aware that this is going on but my pc doc feels his hands are tied from the no prednisone thing,I don't want to have to get off the mp to even do prednisone but this cant go on........
I am sitting here able to breath in ok but the out breath is very hard and mucassy,I am aking musinex but it seems to make it worse almost as it is trying to come out because I don't have the breath to really make it productive. The intestine are just swollen and full of gas that is not moving,but had severe diarea yesterday so I know that it should move,I am kneedinfg as we speak.I am miserable and unsure if I should stay on the mp,I really don't know what to do
I am doing the beni q4 should I do more like 20 subligually to boot in between doses?At this point I am willing to try ANYTHING.Thanx for responding so quickly and will check here again in a few to see a response thanx much,very much,Bonbon
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Joyful
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Posted: Mon Sep 14th, 2009 04:34 |
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Sounds like you are having too much inflammation all over. No more Mino for sure.
I'm sending you a PM, but yes, the sublingual is good when your digestion isn't taking up enough.
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 03:34 |
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joyful,
I think I will try to take the beni less too.I found out that in some of us the beni taken in the extra doses can cause the extra water in the tissues and the ankles which I am experiencing right now.I may get off the beni all together just to let things settle.I need to be able to have less restrictions for my care than the mp is affording me at this time.I have a feeling that all the natural fawna inthe gut and intestine are just about spent and with adding thebfact I have to use colace all of a sudden and now lactulose to me means my body needs a good old fashioned detoxing.I can always pick up the mp in a few months and in the meantime I can hoard some till then.
For now I am changing the beni dose to 20 every 6hrs,to see if this will help with getting the gut and the lungs to calm down it was very scary to have to do a hour long nebulizor treatment in the er just so I could breath out,I can breath in but not out.I want to be able to breath period,and as bad as my sarc had got in the past there are times when the non steriod anti-inflammatory meds just don't work as in this case now,I just can't breath or go to the bathroom.
I plan on weaning off for now of the beni the doing a regimen of probiotics and detoxing to get control of my body again.I will be posting this progress on my back/better post,thanx much joyful for all you are oxoxo,Bonbon
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 03:50 |
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ok guys,
not doing well at all.intestine is exrtremely swollen to the poiunt of having to make my stool water to get it to move with lactulose which is NOT good,I can have a heart attack from the loss of electrolyes.I had to have a breathing treatment that lasted an hour just to be able to breath OUT.I can breath in but not out,I am weezing so bad and to walk is scary,very scary,when the breath is lost it is extememly hard to stop and get it back.Just picking up the water jug of a quart size in the frig makes my out of breath,
SOOOO,I am going to lower the beni since that higher my be the culprit for the extra water on the ankles,feet.I will be going to 20 beni q8 to see if this heklps,I am seriousely considering stopping the mp and doing a major detox then start up again in a few months.good healing,B
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matthew.gatenby
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Posted: Tue Sep 15th, 2009 04:18 |
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Hey xena ,
cant say much , just wanted to say sorry your doing it tough ..
did you stop the mino.
have you always had this hard of a time on it ...
how are you just on benicar ?
do you know if there is alternatives to mino or something else you can try.. as i know your not meant to go under 25mg mino ..
Matt
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marion villa
Member
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Posted: Tue Sep 15th, 2009 04:26 |
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xena.
I think you shouldnt stop the benicar.
Please continue taking it and take 20mg sublingually to see if it helps, you are having strong IPR and it is about the mino dose, I dont know if you react better if you space doses or if it sit you to take the mino more fequentely.
please take care
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 04:33 |
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hey mat,
yeah I have just been on beni 40 q4 with 20 sublingually to try to get this under contriol.When I was on the mp back in 2005 i didn't have any problems at all,in fact it helped me get off oxygen.
No I was told by a moderwator that some of us have to try less beni when the more makes it worse,I now have water on the feet and ankles and it is really getting scary and out of control.I have been off the mino for about a 3wks now.These things happen look art aussie barb she had to get off to because of the ip being to strong.I have had it really hard this time around but it reallt is time to quit before it gets so bad I am hospitalized and I am getting very close.I shouls have known when the doc wanted me to start a stool softener that I was going to go downhill.As I type right now I am swelling up from just some water broth with very soft zuchini and leeks cooked in it,it is all just to scary and to much.I am starting the weaning process from the beni and go thru a detox then in a few months just try again,I don't know what else to do,I need to breath and poop bonnie
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 04:39 |
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marion I haven't been on the mino for close to a month,the extra beni is doing this now,I am going to try the beni sub 20 q8 and see if this will settle things down if not I have to be able to function and if that means stopping at this point then I will.
Have you every been able to breath in but not out,it is horrible I am drowning literally,or have your gut swell to the point of having to have a tube down you to release the gas? I appreciate the advice but I have my limits,respectfully,bonnie
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matthew.gatenby
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Posted: Tue Sep 15th, 2009 06:25 |
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xena ,
i have read your story and yeah i find myself ..
1 thinking poor you !
2 thinking did you continue to improve off the mp?
do you think your immune system was active or do you think you were sliding back down..
it just seems that yeah your pretty sick .. and perhaps what i was thinking is that the benicar is activating too many of the vdr receptors ..
i know there is a whole lot of informationand so do you in regards to the benicar blockade etc and the levels needed ..
i just cant help but think you have all these bugs and your body does not see them then its getting lit up like a torch and goes oh crap ....
thats what it seems , i know they made the protocol as one size fits all
as best they could but if you believe it works and i think it does then there must be some way or some compromises you can make to continue ...
i dont want other people to follow this advice ..
but i think you should email trevor and say look this is my story this is whats happening .. what can i try ..
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 08:44 |
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again thanx mat,
trevor is in china right now and unavailable.I don't want to stop either but maybe I'm like aussie barb and need to stop,I can't have my belly swelling,I am afraid to eat and it is swollen right now I can't even pass gas it is not good,and the lung thing is even worse,I am going to try backing off the beni as stated above to the 20 sublingually every 8 hrs,this right now is the best I can do to try to keep from getting off the beni altogether,I am trying like hell right now to just get rid of the gas that has built up all yesterday and going into the second day,I don't want to stop either but I want to live more....and breath,which by the way I am taking levaquin now for the lungs and mucinex 1,200 extra strenght every 12 hrs.I have to drink soooo much water and I am even more sooooo miserable my ankles are getting bigger by the hour,and now about 30 min ago my heart is palpitating again
I have to try to sleep I am exhausted from coughing and the bowel pain,good niter and thanx for all the help,it is truly appreciated,bonnie
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matthew.gatenby
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Posted: Tue Sep 15th, 2009 09:24 |
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xena ,
people go by what they know and a bunch of documents published of what to do
i personally think you fall out of that category.
i think try off the benicar until you can get some real straight answers .. stop
if you think it has an effect stop if it make you return to functional .
whatever gets you through at this point as not being able to breathe is , well not n option an i suppport you in your logic and your changes.
i will say if you go off it and it becomes worse have some close by and take it under the tongue ...
see if it helps..
i personally think you are an far devoloped case and require a little more attention and treatment variant .
get yourself stable , talk to trevor , i know meg has started the circle website where you can get proper clinical medical advice and mabye that what you need .
i think you need alternative plans and options and not really stuck here with the rest of us ...
if you need to chat with someone send me a message and i will call you
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Sallie Q
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Posted: Tue Sep 15th, 2009 12:36 |
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ouch
do you take a little salt with your water
I put a fraction of a teaspoon of sea salt in the jug of water whenever I think of it, to be sure I do not lose salts too much
In your situation there is NO way I would go back on mino or any other of the anti-biotics for a long long long tiiiiime
the Beni sub 20 sounds good to me , but as Matt says you'm a special case, not too many even of the original group would have the experience similar enough to yours
hope you are not too sick to reach for the music
S
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 14:52 |
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I really love all of you for this support,it really means lots.I have the ap to get to my doc for the other site but I am afraid to go out in the sun right now as I am having the same intestinal experience I went thru when my grandbaby was here.I may opt to mail it to the doc to get it going.
My feet are on fire todayup the ankles and breathing a little better with the levaquin,it seems to be breaking it up,it's the coughing fits,i am so sore on my sides I am afraid depression is setting in,yeah here come the tears.
I slept with my bible and talked to the lord all nite,didn't make any promises I don't plan on keeping,just for the comfort,it has been to hard to meditate,can't seem to focus and get deep enough to get to that secret place so said the lords prayer all nite till sleep found me.
I woke up about two hrs later thinking a earth quake was happening and I am not being funny.My whole body seemed to be shaking in the mid section it scared the hell out of me,then all of a sudden much gas passed but the gut is swollen again.So needless to say I have the good book out again and am spending quite time just reading the stories and in somewhat deep contemplation.
breathing treatment is productive and phlegm is a little like glue and yellow to brown,it's been in there a while. Grabbed one of those flutter things to help break up the stuff from the er the other nite.I am doing 10 blows an hr and is finally productive.
All in all I'm actually feelin optimistic now even tho the lungs still fail to walk to the bathroom.My sis got me some diapers as I am having problems with peeing in my pants when I cough,pretty much a bummer,I am only 47,BUT we won't get that started or go there,the main thing is today is new and the sun is shining in my world today as the progress begins,which is cause for doing a jig
I'm gonna always make it,damn the tears,there are because I am happy today,things are lookin up.I am gonna always make it,I don't know any other way to live,good healing all oxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxooxxoxoxobonnie
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xenaspower
Member
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Posted: Tue Sep 15th, 2009 18:48 |
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hi all,
had a friend come by with an infused cannabis oil and was able to finally sleep.Gut is very calm now and gas is about non existent. I plan on using this oil for the next few to recover from the last week,I had forgotten about this option for myself and am very grateful for this medicine,it absolutely calms the gut,has kept the cramps and touch of nausia at bay for about 5 hrs now,will take another teaspoon at bedtime,even though it is being digested it still acts as a good expectorant also and is helping with the congestion too.Friend brought by a regimmen of other herbs,peppermint,red clover,valerian and lemon grass.I am really thinking the chemicals from all the laxatives is contributing to alot of the problems,having sister get probiotics and senna seed tea at the healthfood store.
feeling way better and more optomistic as the day unfolds,just elaxing and drinking moderately warm herbal teas and reading when the cannabis isn't having me sleep.Thanx to all for the support once again,have been doing the beni sublingually now every 8 hrs since last night and getting better,so will let things calm and relax for now,recover from this ordeal
breathing treatments are q4-6 as needed and productive,becoming more clear with specks every now and then when the cough is deep.feet just tingling now(it's the cannabis) and feeling better but still swollen and retaining water on the ankles. No other pain in the body even tho have stopped by choice the oxycontin,cannabis is sufficient in keeping with drawal down for at least 2 days known from experience so will try to get the bowel to move.Nasal drip now and again but not enough to get tissue.
I think I'm gonna make it really feeling like I could use a real good detox,any suggestions while on the beni would be appreciated,my body can take chemicals only so long...............good healing all,bonnie
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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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marion villa
Member
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Posted: Tue Sep 15th, 2009 20:43 |
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bonnie. good that you have found something that works to you (eventhough some body will rise its brow)
I believe that asthmatic people can breath in but not out .I am sorry you are not feeling well,take care,
hoping you get better
marion
Last edited on Tue Sep 15th, 2009 20:52 by marion villa
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Sallie Q
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Posted: Tue Sep 15th, 2009 22:30 |
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