what to do

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marigoldgirl81

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hello, its me again, the girl whom can't get rid of acid reflux.....so, things are awful, they just kind of glide along a scale of awful to really awful, etc. So, i have scheduled for now a 3rd opinion (can't get in till the 28th of Jan) at the urging of my 2 nurse aunts....and i see my GI dr that i feel hasn't done a ton for me on the 6th for a jolly old check-up...my question is, what is it you people (the ones whom have it bad like me) do whilst your esophagus is eroding away and you are trying everything but failing.....what is it you do while waiting for help? Some days i'm 48% sure i'll survive this and days like today where my son has the flu and i have so many sores in my throat, i'm terrified of getting sick on top of this. I'm just not ready to die, especially from this. I can't believe i'm writing this but i am so worn out, especially after i became ill after trying carafate the other day...how can my body ever heal from all of this 6 months of damage? Every meal, snack, drink is such a fricken task, i am soooo tired and a new year is coming and this thing is relentless. I just want this to be in remission or what have you so badly. I actually felt "decent" last night and i took some extra magnesium and my tummy felt really relaxed and i have been sooo unusually hungry...so i've been eating in mild discomfort all day then at 3 i ate/did something my body hated and felt like my diaphram was huge and blated and chest was compressed and now i can't get that feeling to go down, same fooRAB as yesterday....

idk, just looking for suggestions for my mind i guess b/c i feel like i have the worst case of gerd ever...maybe the "severe gerd" diagnosis + discomfort is getting to me.

things i'm doing right now:

2 prilosec's a day
dgl lic. a few times a day (just recently)
aloe vera juice 2 oz 3 x a day
chinese stomach formula and herbs for these issues
xanax .06 mg a day and lamictal .125 a day (weaning)
staying away from potatoes (notice they make me feel worse recently)
staying away from caffeine, alcohol, blah blah blah
2 probiotics a day
ensures to stop losing weight
trying to stay sane through this :)
 
oh , now i see another post here and i posted on one before also here of yours.

Prilosec did nothing for me. Have you tried prescription Nexium and the Liquid Carafate. I also chew tums as i need them.

Since it's been Holiday season i've even tried the pepermint ice cream , anything for something cool and soothing to my throat and stomach.

I had asked in another post about the erosive esophagus, do you have this too? If so, did they label it with stage 2 or anything such?

Be Well
BeHappy2
 
Hi Marigoldgirl,

So sorry to hear that you are still suffering badly!! Have you tried all of the PPIs? The reason I ask is that last week a friend and his wife, who were visiting family over Christmas, popped round. I explained that I was suffering pretty badly from acid reflux and told her that I was on 40mg Pantoprazole per day (I have been on 40mg twice a day at times). I been taking this since Sep 09 and to be completely honest, have not noticed it doing all that much.

Now it just so happens that she works in medical research and specialises in stomach conditions. She said that during their testing they found that Lansoprazole came out as the most successful and suggested that I go back to my doctor to see if he could try me on one of the other "flavours". So I went to see him on Wednesday last week and he prescribed 30mg Lansoprazole, once per day saying that each manufacturer claims that their PPI is best but some suit individuals better than others.

The difference for me has been miraculous!! My symptoms have died away completely including sinus drainage and burning and I have been able to eat and drink anything I want. Now I am hoping that there are no relapses and also hope that I won't need to be on the PPI for life but it has been a real relief and has given me a lot of hope.

Despite my symptoms not being as bad as yours (even during my bad days), I do know how you feel and urge you to keep the faith that things can and will get better. I think it is too easy to see chronic conditions as permanent. I also hope that you haven't already tried all of the different PPIs and will be able to get them. I know that the different PPIs go under different brand names in different countries so have a look on the Wiki if unsure.

My thoughts are with you, keep in touch!!

Kind regarRAB
 
thanks you guys. I have tried protonix but couldn't handle the migraines, anxiety, sweating, etc. Prilosec gave me side effects but not as much. I just tried carafate (+ prilosec) and it was AWFUL, i was spinning and whirling all day and super groggy, no way i could take care of my son or go to work. I am really contemplating trying nexium, i have the samples...just waiting for a little less discomfort b/c the protonix made it feel worse in august and i just am afraid of that happening again, and now i am so much worse off than i was in august. I have been eating small regular meals and am trying to keep my head up but i feel like i have the worst case ever, sometimes i just can't imagine how my 28 year old body will ever heal from all of this. I haven't had a relux free MEAL or SNACK (to my knowledge) in 3 months :( :(

....buuuut you give me hope, maybe i should really give this nexium a shot again (i took it for one day for ibs symptoms a long time ago but acid wasn't the problem at the time so it didn't help). Thanks for your support guys.
 
i think you're taking to many things at once and its having issues with each other. try just a strong nexium pill or equal to it. ask the pharmacy with is the best. you can also have tums on hand for instance help. in the mean time try taking malox before meals. and only eat none spicey fooRAB and no carbonated drinks no coffee or anything with caffine.
 
mucous
Glad to hear your doing good!! Do you have lpr? How long did it take before you felt better on lansoprole I have been on nexium for 2 weeks not much help and it does not matter what i eat its always some what there!! So wondering how long it took to help you!!?? What were you symtoms? are you still doing well!! Thats awesome you can eat what you want!!That is how it should be thats why we take the meRAB!!?? My symtoms are feeling like something is stuck in throat on left side!! and sore throat sometimes!! I feel like this will never go away so nice to hear your story hope your still doing well!! Would love to hear from you
 
Hey mucus or anyone with info and doing better??
Glad to hear your doing well!! Did you have lpr or gerd!! I ahve been on nexium 40mg 2x a day for a month!! I dont know if I should switch or not I'm being scoped but don't want to spend the money on the nexuim if they are going to switch me!! I have had the feeling of something stuck on the left side of my throat lots of mucus and sore throat that comes and goes!! Are you still dong better? Are you able to eat the fooRAB again? It does not seem to matter what I eat!! I have been watching caffinne and choc acid fooRAB as well!! The feeling in my throat seems smaller and somedays better than others but did that happen to you when you started the meRAB? I would love to hear from you and see how you are doing and if you have any advice? I know they say some ppis work better for some people but not as well for others I guess I was wondering how to know when to switch and try another ppi thanks
 
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