Alternatives to PPI's

Thanks Lily. My internist says it cannot be related to the shingles aka postherpetic neuralgia because it is not respecting the midline and not near the area of the original shingles rash. I wish it was related because at least then I would have some answers.

Since mid February (when the burning symptoms first started) I have been to my internist several times. I have been referred to a neurologist and had an MRI of the head and neck with negative results. I saw a rheumatologist and had a CAT scan of the chest. I saw my dermatologist for more testing. I have had a chest x ray and many blood tests and 2 endoscopies and seen a few different gastros (2 of them esophageal specialists) and I am supposed to have that manometry and ph impedance testing next week but I am seriously thinking of canceling. I just don't want to go through that kind of invasive testing. Especially because I just don't think it will give me any answers.

So right now I am doing the best I can to get through this difficult time and I really hope I will be able to look back on this and just be grateful I was able to recover. My greatest fear is of course not getting better but I am focusing on healing and hope I can get back to my normal healthy and cheerful self. I want my ordinary boring life back so badly.

Thank you so much for your advice, recommendations and support. It means so much to me.

Good Morning all. I hope it is a better day for everyone. Javery have things evened out for you this last couple of days?
I don't think I should complain but I think I am going to. After several days of feeling 'normal' it has come crashing back today. I started with the foot cramp in the night and didn't feel well. Now I have the sweating, off balance, nausea, pressure in the chest feeling again. Too bad I didn't feel like this yesterday when I was in the doctors office. After a couple of good days I had forgotten how horrible I can feel sometimes. This is now my 7th week on the 20mgs and I was really really hoping I would have taken a turn for the better. I just can't function when I feel like this (miserable). Sorry, I know there are people worse off than I am but I really need the support and someone to tell me it will get better again.

I'm doing better now than I was the last few days. Things seem to be getting back to how they were but I was having the problems mostly due to all of the medication leaving my system from the pepcid and it takes a few days for things to go back. My LPR symptoms have increased so I think I may start to do things to take care of that. I still have the dry throat. I had that before which got me onto drinking alkaline water and it took a few weeks for it to finally go away so I'm thinking that when I stopped the pepcid my body started producing more acid which allowed more pepsin to go into my esophagus which is now causing the problems. I'll just have to wait that one out I guess. I'm starting to get more gas when I eat as well. Thinking I should start to take probiotics again 2-3 times a day. I still have some and try to remember but need to be more strict about it. I went back to juicing but not making the same juices. Now it's just a piece of pineapple, 2 small mandarin oranges, and 3-4 carrots. I also eat 2 eggs in the morning now along with the juice plus some grapes. I'm thinking I'll create a new juice recipe to follow.

2 kiwi - these fruits have a lot of nutrients
3-4 carrots
2-3 kale leaves
1/8th pineapple

I may adjust based on taste but think this will be better as I'm leaving out the cucumber and apples. I'll probably continue to eat the 2 eggs and some grapes as well. They help keep me fuller longer until I eat lunch. I eat around 5:50 - 6:00 am then lunch around 10:30 am. Then I have some melon around 1-2 pm then eat dinner around 5 pm. I also have a new unopened bottle of prebiotics with fiber so I think I'll start doing that again with the probiotics as it's supposed to help with building the probiotics. I just got off of a specific regime a little and started down a bad path but I think once I get on this new plan then things will be better again. I'm back to 1 pepsin a day at bedtime but haven't had any heartburn yesterday or today so far, just the dry throat and a little post nasal drip. I think the alkaline water will help clear that up over the next few weeks. I'm also going to do some more research on different vitamins and nutrients to see what might help with different things so I will possibly adjust foods I eat as well based on that.

I've also been thinking of starting another blog as well on wordpress.com. I've got a photography blog as I do that as a hobby and I can just create another one under my account. I'd probably label it as a Healthy Living and Eating blog that I will post all of my research on so when I forget some of the things I have found, which I tend to do quite a bit, I don't have to re-research it. I can just go to the blog to refresh myself. I'm thinking I'll probably set that as a project to get started on this weekend. When I get it up and running I'll post it here so people can follow it as well for help. I'll do blog posts about different information I find out different foods, why they may or may not be good for you along with links to different studies and articles for additional information. I'll probably also post about my health issues and journey with trying to become more healthy and fix my problems. I think it'll be fun and help keep me on track.

I hope you are just having a day or two of the downward slope of the roller coaster and it comes back up and you have a good weekend Lily. I know how it feels where you think things are going great and then you have a bad day and start to second guess yourself and then start thinking that you'll never get to that point of getting off the PPI's. The best thing you can do though is just keep pushing through and distract yourself with other things to keep your mind off of it and things will continue to improve.

Javery, I will really look forward to your blog when you get it up and running. It will be a huge help for everyone going on this journey. You are able to figure out just what to do when things are not going well for you. I sort of flounder and get soooo disappointed when I don't move along feeling better. I worry all the time about the leg cramps the dry stuck in the throat feeling, which I don't have all the time but it was bad last night but better today. These symptoms are so strange and instead of once you start to feel better, stay better, that is not the case. I have the flutter again in my chest today and feel pressure and I am tired. Sorry to moan as you are so upbeat and can take me out of my funk. I find food to be a problem and don't know what to have half the time. What do you eat for lunches?
What kind of melon do you eat. I had a lot of honeydew last week but there hasn't been any in the store this week. I find cantaloupe will give me heart burn to some degree. Don't grapes have a lot of acid in them?
Hi Mouche, no I didn't do anything different yesterday at all and I am watching what I eat all the time. The only thing I can think of is I didn't drink as much of the alkaline water that I have been doing so that could have done it. I don't know. I hope your day is going better than mine. I am trying to be positive and find things to distract me but not easy when I feel so lousy.

Lily, some say you should and some say you should not eat watermelon for GERD, but I've found that it work wonders for me, especially for my throat and the little burn that comes and go.

I eat it every morning and evening, it calms everything down for me.

Babeinthe woods, I read the article regarding the strawberry extract and I found it very interesting. If it works it might be the answer to some of the problems we are all experiencing. I am somewhat wary about trying more 'natural' products. I bought 'acid ease' not sure that did anything. I tried a product that was supposed to protect the whole digestive tract called 'intestinew' that made me really sick for 3 days and instead of healing anything made things worse. I use the dgl and find that to be one of the most helpful things yet. Kefir is a good probiotic and tastes good too.
If anyone tries the strawberry extract please let us know.
Mouche - thanks for mentioning the Aloe Vero juice. I have been looking at it in the store but didn't know which was good or not so good. Does it have to be 'inner leaf'? Is any aloe juice good to use? Thanks

@Mouche Please know that I am praying for you!

Mouche,

I believe it is already done as well. I know for me personally, the Lord has taught me a lot through all of this and I think we are on our road to being completely healed. Praise the Lord!

@RebeccaMorgan, AMEN!!

javery said...
Sorry you are going through so much right now hayleybw. I think you are also doing the right thing by getting off the PPI's as they can cause more problems down the road. I think eating more vegetables will help out a lot as they have a lot of phyto-nutrients which will help your body heal. Supplements are definitely helpful for helping with the symptoms as they don't cause the side effects as the meds do. I hope your recovery is successful with little problems.

Thank you so much Javery. I appreciate your help. I eat mainly a vegan diet to begin with which makes diet tweaks difficult because I have little to cut out. But there is always room for improvement I guess.

Today was day 2 of the probiotics and I think it is causing some gas issues for me but hopefully that will sort itself out soon. I have been feeling worse these last 2 days so had to take a Ranitidine last night and tonight.

Looking forward to reading your blog when you get it up and running and hope you continue feeling better Javery.

Mouche said...
Thanks Lily, glad you are finally having some better days, I feel much better today myself which makes me think it was the Lean Cusine meal. I will be adding that to my list of no no foods:)


@Hayleybw, welcome to this thread and the fourm, I too am grateful that Lily started this off, it has been so helpful to me and others.

Your plan sounds so close to mine, I am weaning off Nexium too, I also drink the Aloe Vera juice (inner leaf) it has been a real big help for me and I can tell when I don't drink it. I get mine from WalMart $7.44 for a big bottle, I also use the DGL and I have the digestive enzymes as well. I also have probiotics but was thinking about going to Whole Foods as they have the kind you're taking that has to be refrigerated.

So how are you weaning? Do you take half the dose daily or do you take it every other day? I also wanted to let you know if you didn't already that Nexium comes in the granulated packets of 10mg, my doc will be prescribing those for my next step down.

So glad you are here with us on this thread and I will be praying for you as well, we will be free of this drug. :)

Thank you so much for the warm welcome Mouche. The probiotics I am taking are from Klaire Labs and called Ther-Complete. They come packed with ice bags to keep it cool and need to be refrigerated for best results. I chose them after reading an article written by several MD's on this issue. That's how I chose the digestive enzymes and DGL as well. However I have no clue if they will be helpful or not as I suspect it depends on what is causing the acid reflux to begin with and that probably differs with each person.

As for what I am doing to wean myself off well, it's sort of without any exact plan. At first I thought I was going to reduce to 20 mg Nexium every day and then go for a week like that and then reduce it to q.o.d for a week and then twice a week and then once a week and then done. Haha, what a novice mistake.

So right now what has actually happened was last Tuesday (when I first started reducing) I only took one 40 mg Nexium (as opposed to 40 mg b.i.d.) and then the 300 mg ranitidine qhs. Then Wednesday I didn't take the Nexium at all and took 150 mg ranitidine before bed. I wasn't doing well but pushed through.

Then next few nights are sort of a blur to me as I cannot remember if I took the Ranitidine and what dose. I have been in a discomfort haze/blur for the last couple of months and not as clear as I normally am. Really if you knew me I am a very organized disciplined individual and I sometimes feel as if I am falling apart lately. But I digress.

The next time I took Nexium (20mg) was that Sunday afternoon and I was in quite a bit of discomfort with chest/back/neck/arm burning and the chest squeezing which is the worst symptom for me. I am experiencing it right now and very very uncomfortable.

Then I skipped Mon/Tues/Wed/Thursday for the Nexium (probably a mistake) but have been taking Ranitidine before bed every night these last 4 nights. I have been using a pill cutter on the 300 mg Ranitidine estimating about 100mg at each dose except for tonight when I decided to take 1/2 pill or 150 mg Ranitidine because the squeezing and burning is quite bad.

For the Nexium I took the capsule and opened it and poured half into a spoon of applesauce and took it that way. I have quite a lot of the 40 mg Nexium from my prescriptions left and I also didn't want to deal with contacting my doctor for a different prescription/dosage. It is such a pain getting through to these doctors sometimes.

I might have been making a mistake reducing this way and at this point since I have no clue what caused me to get this acid reflux to start with I have no idea if I will be able to get free of acid reducing meds. I am worried because my quality of life these last few months has really been poor and I just feel so unwell. With the burning of not just my chest but back/neck/arms and chest squeezing there's always a noise distracting me from my daily enjoyment of life and interfering with work and fun activities and just plain peace and quiet if you kwim. Sorry for the mini vent. It gets so overwhelming at times:(

Thanks for sharing what you are doing Mouche and about the Nexium granules and also for your good wishes. And I am keeping you in my thoughts and prayers too and sending you lots of hugs and healing vibes.

Hi Dencha, My vote is for you to start the new thread. I think that would be fine as I am not too knowledgable. As long as we can all find one another I think that would be OK. This group have been invaluable to me so I don't want to lose my daily contact with them while we are all going this difficult journey. Thank you. How would I find the new thread? lily

Hello all, Not sure if everyone is still here or if Dencha did a new thread. How is everyone today?
Javery, I do hope you didn't think I was criticizing anything you said about your diet, I was just curious. I can't say I feel 100% again today but then I haven't been 100% since February and wonder if I will ever get there again. Just in case something happens with this thread and we get lost please note my e-mail so that when you do your blog you can e-mail me thank you [email protected] however I hope we don't get lost and you will keep on posting on here. I need your support as I go through this withdrawal period in the hopes that one day I might feel 'normal' again.
Mouche, I am concerned with my 'delicate' stomach about doing this cleanse for the colonoscopy and having to drink so much stuff. I rarely drink juices and haven't done for years. I drink room temperature water for the most part but my instructions are to drink at 64oz bottle of Gatorade. How did you get your stuff down on the cleanse day. I have to do the magnesium citrate and miralax combo. Yuk I am not looking forward to it at all.
Rebecca and Hayley are you any better today?