drtinsac journal - GERD/LPR - part 2

Drtinsac
Been following your dilemma . You have tried many Rx but none for any length of time (I think). But I don't know what your thoughts are regarding oxalates. The decrease (elimination if possible) in oxalates seems to be helpful but it has to be followed for a considerable period of time . Approximately six months and improvements come very gradually to the burning areas of the body. Might be worth a try. We try to eat healthy but maybe too healthy as far as eating a lot of green oxalates containing veggies. I'm not a researcher like you but an RD told me this. Just thought I'd mention this, for what it's worth.

Hi Pat. Thanks for the tip on the oxalates. I googled it today and it seems to be mostly dealt with as an alternative form of therapy. I haven't looked much into it, but it reminds me a bit of the group of people who believe they have candida infections responsible for all their ills.

Not saying it wouldn't help certain people, but I just didn't see evidence (citations for journal articles etc.) that it would be worth spending much energy on.. especially with me, I do not eat a lot of the high oxalate foods anyway, so it seems like even though it might theoretically help, it is not my main problem. There are other things that people suggest also, that may help: e.g., relaxation, deep breathing, minimizing eating acidic foods. But those are all ways to decrease/distract from symptoms, and are not solving the actual problem.

I'm still interested in knowing what my actual problem is, rather than making changes that may make minute differences in symptoms but either require too much effort or cause other problems (like the nerve pain drugs I've tried).

It's true that some drugs I haven't stayed on for very long, but from the papers I've read, typically effects are noticed very quickly. If I had noticed ANY change from those drugs, I'd probably have dealt with the side effects and taken them for longer. But I do think I've given them a fair shake.
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I did have a pretty darn good day today, one of the best days I can remember actually for my tongue burning/taste symptoms. Definite decrease. This morning, I had no dairy, and ate breaded chicken patty with brown rice topped with some agave nectar, and 4 beef taquitos. Swished/swallowed some of that magic mouthwash about an hour after eating.

Last night, I took a claritin, 20mg famotidine, and 1 aleve. This morning, I took a claritin, famotidine, and 2 aleves, followed by 650mg of aspirin about an hour after that. I also used a dose of carafate about 20 minute before lunch which was chicken breast, brown rice and agave nectar.

I re-read the case studies in the paper I mentioned above where people with BMS, including taste disturbances, experienced relief with a similar cocktail. The specific cocktail used in the paper was:
Twice a day: 1 claritin (or generic) 10mg, 40mg famotidine, and anywhere from 600-900 mg of aspirin. (Two of the case studies in the paper used Celebrex as an anti-inflammatory).

So tonight and tomorrow, I'm going to go with that dosage (twice the famotidine I've been taking) and 650mg of aspirin 2x a day, and I'm going to keep away from dairy.

It's known as magic mouthwash, but there are many variations on it. To make it, the doctor must tell the pharmacist what ingredients and what quantity to include.

My dentist is who gave me the prescription. In her email describing it, I believe it has more than this, but this is what my prescription bottle says (but the text is cut off so I think there would be more):

lidocaine hc / diphenhydram / hydrocortisone / nystatin susp

... I think it includes some antibiotic as well that's not on the label because there is too much text on this little label.

I don't know how useful it is for me, it definitely numbs the mouth, but is hardly more comfortable than my regular symptoms.

Since the mixture varies, I think they put it together based on what they think is going on. The pharmacist said they give it to kids a lot of the time, maybe because they don't want to swallow pills. This particular mixture probably covers about everything that may cause burning in there.. except nerve issues of course.

Here is the email from my dentist:

"..we can perscribe you something called "magic mouthwash". This is just a concoction of viscous lidocaine 2%, diphenhyramine, hydrocortisol, tetracycline and nystatin."

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While I'm here. I thought of something the other day when thinking about seeing the neurologist. Maybe 5 years ago, I'd gone to see a neurologist because of headaches. They took some head scans, and found a "hemangioma" on my left optic nerve. I haven't found an easy to look at map of the cranial nerves, but I wonder perhaps if that tumor is possibly affecting another nerve, such as the trigeminal, which has been implicated in BMS. I'll bring that up with the neurologist, and perhaps ask for another brain scan to see if that thing has changed.

From googling, it appears those may cause issues with vision.. not BMS. Oddly, in the past I've noticed that in pictures, often my left eye isn't as far open as my right eye.. and a Dr. that I used to work with (a cardiologist) noticed that my mouth seemed to move differently on one side.

Anyway, those are the only experiences (possible experiences) I've had with neurological issues.. I'm glad I'll get to discuss it with a neurologist. I can see them thinking I'm nuts if I bring up all these possibilities as "clues".. I just hope they realize what it's like to live with constant symptoms, and that I'm trying to think of ANY abnormality that may offer even the smallest clue as to what's going on.

Today was another pretty good day symptom wise. I'd say, before using this allergy mixture for BMS, my symptoms were about a 5/10 on my 4pm drive home and after (usually I am so engaged in my work, I don't notice the symptoms as much). The past couple days I'd say they are about a 2.5. And the bitter taste is more often seeming to be salty.

This mixture has been the best thing I've tried so far, easily beating out the effectiveness of anything I've tried before, and quickly. I don't know why it's helping, but in my opinion it's still not helping enough.. it might just be masking symptoms, but I also feel good -- good energy, calmness, and focus, so it is basically without any side effects. I'm also avoiding dairy. I'll see if I can work some dairy into the mix to see if that really was an issue for me.

Various updates..

I don't think I mentioned it before, but for about the past 4 days I've been taking alpha lipoic acid, which has some evidence for helping with burning mouth syndrome and neuropathic pain. However it also commonly causes heartburn/GI symptoms in people who don't have them to begin with. For the first few days I was OK, but Saturday I began to feel chills, which have always seemed to start in my stomach. I've always thought it was a sign of gastritis. The only other thing that may be causing stomach irritation is the aspirin or naproxen that I've been taking as part of the anti allergy/inflammation cocktail. But it is said that taking an acid blocker (part of the cocktail) helps to counteract stomach upset.

I've also taken R-lipoic acid which some people say has fewer GI effects, I only took it 2 days so far, but still getting some chills. Given the fact that ALA is known to cause GI problems, I'm going to stop that, continue with the aspirin-based allergy cocktail, and hopefully the chills will go away.

On the allergy cocktail; as I mentioned it has been the best thing I've tried so far, but it only decreases my symptoms so much. In the original paper, all the patients were described as starting out with constant 10/10 burning pain (which sounds MUCH worse than what I have), and in 2 of the 3 cases, their pain went to level 0 or level 1. My symptoms are, at worst 6/10, and they've improved to maybe 3.5/10. So while this cocktail is helping some, I do not believe I have the same condition as the people who were so helped by it.

I was flipping through Maxim magazine yesterday when I saw an ad for a workout supplement, something like "dopamite". I was thinking it was strange that a product might affect dopamine since I thought anything like that would be prescription. The reason that I am interested in dopamine is because there are papers suggesting that dopamine can play a role in burning mouth syndrome (BMS) and that people who hadn't responded to traditional treatments, had responded to pramipexole. I'd sent that reference to my PCP, but she opted to send me to neurology rather than prescribe that for me. Pramipexole is a dopamine receptor agonist, essentially it acts as a substitute for dopamine by triggering the same receptors. In my trials of various drugs, none of them have been dopamine agonists. In fact, olanzapine (Zyprexa) is an dopamine antagonist, just the opposite.

Anyway, I headed over to amazon (where I get all these supplements I've tried) and just for kicks, typed in "dopamine". I was surprised at all the results available, I really thought I had searched for natural dopamine supplements before but I guess I hadn't. Long story short, I ended up ordering a supplement called 'NOW Foods DOPA mucuna'. It is made with velvet bean which contains L-DOPA, and it is converted to dopamine. Like pramipexole, it is used in the treatment of Parkinsons.

So, I was very glad to be able to try something with my dopamine system without having to wait 2 months to see the neurologist. It will be here Tuesday and I'll start then and report back any improvements.

Good link on velvet bean/l-dopa..
www.rain-tree.com/velvetbean.htm#.UZlbMMplEXY

One other note while I'm here. Back before ever taking a PPI, having the tight throat, the only other time when my throat wasn't bothering me as much was when I had a headache. Or when I had tongue burning. I'll try to encapsulate all this for the neurologist, and hope they can make some sense of it, but honestly I doubt they will.

Post Edited (drtinsac) : 5/19/2013 5:36:03 PM (GMT-6)

drtinsac,

Keep us posted.

thanks.

Wits end with what?

Details of cocktail, see message Posted 5/15/2013 5:09 PM (GMT -8)

 

drtinsac,

You are right. Nothing is easy with our medical community. We have to be proactive and do everything our selves.

Crystal,

I feel for you. I really do. I understand your feelings and the discouragement.

Hopefully you will just need more time to heal. The linx does not reach full effectiveness and settle in until about month 4. My doc told me to give it a year before declaring it a "failure" or not.

Are you still on ppi's or did you stop cold turkey per the doctors request? If you were on them and stopped, you could be having serious rebound from stopping them cold turkey.

I was told by the doc that the linx should fix my problem "right away". I do not think that is realistic to tell to a patient.

I don't understand the burning either. I can go 2 days without problems or burning and then the reflux starts back again. When the reflux starts again, I assume it is carrying up with it bile and pepsin which reactivates the burning again. When the burning starts, nothing seems to help it.

Refresh my memory- Which facility did you get the linx implanted in? Which state?

Crystal,

I have been diagnosed with vulvodynia about 10 years ago. It comes and goes. Some times worse than others. I know what you are going through. I too feel that I am more sensitive to certain things.

Ok, we can rule out PPI rebound. My advise, stay on the meds for a while until things settle down for you. I would say at least the 4 month point.

I don't think there have been any "redo's" on the linx. No one has had a revision with it so far. My doc did not give me any options, like you said, "take it out, or get it dilated. I don't want to "take it out", I want it fixed and working like it is for so many people.

I take things day by day, also meal to meal. Some days are better than others. Other days just pure suck.

I don't understand it either. Why are we still experiencing problems when so many have no reflux at all. It just does not make since.

Did you have a h hernia repair done at same time as linx? I am trying to find a common reason for our problems.

You can vent to me or anyone on this forum. We are all here because we need someone to listen especially when our husbands or others are tired of hearing us complain. Trust me, I have been in your shoes with the husband situation.

Let me know how the 2 week phone consultation goes. I think you need to tell them exactly how you feel and what you are going through.

Hugs to you!

Crystal,

I eat very healthy. Organic, no wheat, gluten, soy, corn or dairy. No coffee, etc. It makes things worse.
I have been drinking aloe vera now for about 8 months. My doc said it can heal the esoph.

I too know that I had reflux, as I had a weak LES and the PH test showed reflux. I do think if you are bloated it can open the linx from the other end. I am often bloated too. I try not to eat too much at one meal so that i don't feel uncomfortable and full. I know that when I burp, some acid does come up and my throat starts burning again.

My burning was worse after surgery too. It was like the reflux is more intense after surgery. This has gotten some what better but it has taken a good 8 months or so to get a little better.

I take psyllium husk to help with the bathroom issue. I take it daily and it does help keep things moving more easily. I tired DGL, did not seem to help much. I have tried most things and it did not seem to help too much. When I take Gaviscon, it is a 50/50 chance it will help a little bit.

Did any of your docs tell you if you had bile reflux too? It will cause burn and irritation too. I really feel that I have bile reflux, which it is hard to prove, as bile is non acidic but it is very very irritation.

But then again, if the linx was creating a proper "barrier", then I would not have any of these issues.

We both have such high hopes that this surgery will make us well again. Not perfect or 100% relief but enough to go on with our lives.

Big Hug!

Saw my 2nd opinion ENT today. Result = nothing much, no big insights. She said she's never seen a case that wasn't self-limiting, meaning it will probably go away on its own.

She did recommend trying an elimination diet, chicken rice and broccoli for 3-4 weeks, and to keep everything that comes in contact with my mouth as 'inert' as possible. She said that the scatter eosinophils in my biopsy suggest there may be something allergic going on.

She noted that I (35 yo 'healthy' male) am outside the normal demographic of BMS, and she did not know why it would be connected to my throat symptoms.

Anyway, I'll try the elimination diet. While I'm at it, I'm going to stop cooking in and eating out of tupperware containers and I'll probably take a look at getting some cookware that isn't going to let any weird chemicals into the food. Maybe I'll just toss all the ingredients into a slow cooker :)