The right diet, PPI for reflux

Hi, I need a lot of help, but also hope my post might help someone else in some small way. In January, I began to produce a lot of saliva and experience non-cardiac chest pain. The pain followed a slight change in my exercise regime (ab exercises) and the saliva was a gradual development. I am also a keen cyclist. Interestingly, i also had slight constipation when the chest pains started.

An upper scope showed grade 2 oesophigitis and my gastro also remarked that I had a lot of acid (how can he tell that without a ph test?). He said i would be taking nexium 40 mg for at least 8 months.

Two weeks ago, I reported to my GP and said I was getting a lot of acid, indeed, hot burning acid on my tongue and in my throat. I would also prduce loads of muous (reaction to the acid?) and suffer very bad asthma style attacks. I am an asthmatic, but I have never used the reliever as much as I have in recent weeks. My GP said that it was "all in my head" and actually wrote a referral to an anxiety specialist. I was pretty angry and with good reason because on Easter Saturday, I developed full blown laryngitis. A second doctor at a Government medical centre thought for sure that it was reflux related and precribed more antibiotics.

So Doctor number 1 wouldn't know a reflux symptom if he fell over it. Moreover, he would not even consider the possibility that the Nexium might not be working in my case or, indeed, causing unbearable side effects. So off I go to a new doctor. The nexium 40 mgs stays, but he adds tazac (nizatidine), a H2 blocker. I take this tablet (150 mgs) two times a day.

I am now following the dietry restrictions pretty closely. I have given up alcohol, coffee, acidic fruits and tomatoes/ mints. I never use to drink softdrink or fruit juices to begin with. I do drink water which amazingly seems to trigger acid breakthroughs on occasions. I have asked my wife to tone down the spices. I eat a high fibre breakfast (with added almonds and psyllium husks) with soy milk. I don't eat within 3 hours of going to bed.

I am not beating this curse yet and I have not found a drug or diet regime to control the acids. On a positive, the chest pains have abated and I'm no longer anxious about them because I know they are not heart related (angiogram clear). Ok so here come the questions:

(1) The doctor has given me a sample of somac to take (after I run out of Nexium) because unlike Nexium it can be taken morning and night. Is it normal in the US to take 80 mgs of somac a day?
(2) What is the correct title of the specialist who deals with LPR? I feel I probably have this, although also wonder whether the Nexium is actually causing this problem.
(3) What is the best milk to have on your morning cereal? I am having soy milk (which is about half the price of goats' milk here), but will switch if I'm given good reasons to do so.
(4) I live in Australia and I'm seriously considering laparasopy. However, naturally, I need to do all the tests before doing this. In addition, I will have to wait another 10 months before I can use my private health insurance which I have only recently joined. Feedback on the experience of others with this surgery will greatly benefit me and possibley others.
(5) What antacids are safe to have with my medication? It is going to be a long 10 months for me if I have to go through this on a daily (even hourly) basis.
Thanks very much for all of your help and for providing this forum. I really believe that the US is way ahead of Australia in combating this horribe disease. If I find a solution to any or all of my problems, I sure as hell will post it here to help others.

Christo,

I am so sorry to hear you are still having a rough time, even though you have made the hard changes.  I can't offer much advice but I can tell you of my experience.  First, I'll answer your questions as best I can:

I've not heard of somac.  Must be something not available in the US or it just hasn't come to my attention.

I beleive an ear, nose, and throat doctor would be the best one to deal with LPR. 

I've not had the surgery

I've read that it is okay to take antacids within two hours of taking the ppi's.

My experience is . . . I suffered from pretty bad GERD for a few weeks and was immediately put on PPI's, starting with Prilosec.  It worked for awhile and then stopped completely.  I was put on Nexium which worked for awhile and then stopped completely.  Was put on Aciphex . . . you get the picture.  I tried everything but Prevacid.  They all did an okay job of stopping the acid for awhile but then they all stopped working.  None of them worked 100%.  I got alot of breakthrough acid, even from a glass of water.  After about 4 months of this, I decided to go off the ppi's cold turkey.  The first day I had some acid but it wasn't bad.  Now, it has been almost 4 weeks since I stopped taking the pills and I am doing just fine.  I get acid now and then but it's not bad; a few Tums will stop the burn.  Last night after supper, I had no acid at all.  None.  I think the ppi's had the opposite effect on me and increased my acid production. Through the ordeal I was afraid that I was going to have to live with the pain and fear of cancer.  Now, I know this is something I can live with and manage fairly well.  An endoscopy showed I have a hiatal hernia.

For awhile I turned to DGL licorice and aloe vera juice.  I don't really take the DGL anymore as it didn't really seem to be helping.  I still drink a few ounces of the aloe vera juice morning and night.  Could that be what is helping me?  I don't know but at least it isn't hurting me. 

Have you thought about going off the ppi's and seeing what happens?  You can always go back on them if the acid is worse without them.  It might be worth a try.

By the way . . . doc number 1 sounds like a real jerk.

Tummytuck

Thanks very much for your kind reply. I'm happy that you have managed to get off the PPIs and I agree with you that they can be very nasty drugs. At the moment, I am stuck on them, but I hope to find a solution. My situation is slughtly different to yours in that you have a hiatal hernia whereas I have esophigitis and I have to reduce the acid to prevent further damage. However, you're right - the PPIs are in all likelihood causing different damage. I'm in a mess really, but I'm fighting this pretty hard. I'm still working and that is really helping me. Not only is work a useful distraction (I never thought I'd say that) but it is helping me to pay for all the tests I'm having at the moment. If only I had taken out private insurance earlier!

I konw that you are not overly keen on surgery, but have you thought about getting a complete assessment to see whether you might be able to be helped by either fundoplication or work on the hernia itself. For me, I want to know exactly how the LES is working (or not working) and I also want to get ph readings. I will then get proper costing for the surgery. However, as mentioned, I've got to hold out for 10 months in order to use my recently acquired private insurance. Fundoplication is now a mainstream procedure at Australian private hospitals and that gives me some confidence (or is it straw clutching hope) that surgery might work for me.

I have only done a little research, but I understand that I will have to be off the PPIs for a while in order to do the ph test. This might give me a chance to trial life off the PPIs.

#somac is pantoprazole; nexium is esomeprazole.

Christo,

I would love to be able to have some procedure done so that I don't have to worry about this ailment but docs here won't do it unless you are really bad off and refractory to treatment. I guess I don't qualify. If you decide to have the surgery, please let us know how it goes.

I understand your reluctance to go off the ppi's when you are trying to heal your esophagus. I was lucky to have no damage or irritation at all. Hopefully the meds will heal your esoph and then you can find something that will get rid of or at least control the reflux.

Tummytuck

Dear Tummy,
Fair enough and I hope your strategies continue to work for you.

My reflux is actually getting worse and I'm really at a loss to explain it. Most definitely, most of my attacks occur at night after taking the Nexium. The H2 blocker by way of comparison seems a lot milder.

My brother - who is an annual visitor to the States - told me that a medicine (Rani?) is very widely used to alleviate the symptoms of reflux. Any info on this drug (and interactions with my present medication) would be most appreciated.

Last night - while I was in a very miserable state of mind - I had the following line of thought: in cases of reflux, there is surely a causal role for a weakened LES where there is no hiatal hernia and/ or h pylori. If this is the case, the PPIs might be very effective in reducing overall acid, but actually do nothing to stop bile reflux.