drtinsac journal - GERD/LPR - part 2

drtinsac about three months ago I had a new crown put in. Less then a week later, the crown came off ( this was very expensive and I didn't chew hard or gummy stuff). I revisited the dentist and had it put back in and resealed (their words). They used an ultraviolet light after ( just as they did the first time) . I asked what for. They told me it was to fix the sealant and keep it from coming off again. I wanted to understand the light use so I did the research task. What I found was the coating is acrylic polymer which hardens with the UV light to cure it. Further reading brought me to that BMS link I sent you several days ago. When you look at acrylic polymers exposure I can't help but think about being in contact with it everyday , that it doesn't always agree with everyone's body even though there are millions with it in their mouths. Of course this is just my thinking out loud but can't help but mention it to you in our course to solve health concerns. (I did not verify the product by calling the dentist office as I have not personally had any mouth problems and have several problem free crowns). Kind regards.

Pat Fill,

Thanks for the info. I will surely ask my dentist next time I go just to get their feedback and get another opinion.

Hi Beach - Girl - quite definitely my burning mouth was caused by the lack of Vit B12 and iron - ppi's stop you absorbing these, and if you have a parietal cell positive test you can also be anaemic and need constant iron injections - so it's worth the test. I keep taking my supplements and I have had no return of the symptoms at all.

all the very best.

Haven't been here in a while. I'm still on PPI before dinner, but I've added a product called "GastricSoothe" which is supposed to help with gastritis. Though I don't have any stomach pain, my EGD biopsy showed mild chronic gastritis. And the GI doctor couldn't come up with a good answer why I would have it, especially since both biopsies were after a period of being on PPIs. She finally said "stress can cause excess stomach acid".. I think that is their answer for everything they don't know the answer to, since everyone has it.

Anyway, I emailed my neurology doc about a test result that had come back and said "See EMR", so I wanted to know what the test and result was. Here is the response I got:

Email from neurologist said...

There was an extensive panel of antibody labs sent out to check for nerve dysfunction, the results of which were listed as "send out misc". The list of labs is as follows:

Anti-neuronal nuclear AB
Anti-Glial nuclear AB
Purkinje Cell Cytoplasmic AB
Amphiphysin AB
CRMP-5 IgG
Striated muscle AB
N-type calcium channel Antibody
Ach receptor (muscle) binding AB
AChR ganglionic neuronal AB
Neuronal Voltage gated K+ channel AB

These were all negative with the exception of N-type calcium channel Antibody which was weakly outside the normal limit. (Your level was 0.11, the normal is up until 0.03). Per my research this can be elevated in approximately 3% of healthy adults. I will discuss the results with Dr. xyz, but in the presence of multiple other negative labs and with only a mild elevation, and without clinical findings consistent with N-type calcium channel antibodies, I do not believe it explains your symptoms. I will keep in touch with you after I discuss the result with Dr. xyz.

So.. another weakly negative result. I'm not sure what that means. Hopefully more testing.. or at least some shots at treatments that have worked for others.

It was in my stomach. I'll ask my GI doc about bile reflux. I've also heard the gallbladder is implicated in chills, so perhaps the bile thing is worth a look.

Posting an update. It feels like longer since I've been here, 2 months.. anyway..

I saw the neurologist for my 2nd visit. This is a young neurologist (resident) who was conferring with a senior doctor, a different senior doctor than I had last time.

I asked him the relationship of my high pain threshold with the burning and sour taste, he didn't have a good answer.. said basically that it was unrelated. I still want to know how the first senior doctor I saw predicted a high pain threshold before testing me to confirm it. But unless I ask that guy, I don't think I'm going to get anything interesting from this resident.

He said it's just BMS. Which frankly I am not sure of, since I also have sensitive throat, e.g. it burns with mildly spicy foods. There is a problem there. I don't ever read of BMS patients having throat sensitivity. But, he said it's time to try a drug. First, they wanted to try me on higher doses of either amitriptyline or gabanpentin. Both of which I've tried, but at relatively low doses. For example he said they could jack the dose of amitrityline to 150mg (I'd only been on 25mg).

I definitely didn't want to try that, since my thought was that I already tried it, and neither of those had ANY effect. I argued that I'd expect the dosages I was on to at least have a LITTLE effect if they were going to work.

I really wanted to try paxil (paroxetine) since I've read some papers where 56% of people had complete resolution of tongue burning pain after 12 weeks. The doctor disagreed.

He ended up putting me on Tegretol (carbamazepine). I've read 0 case studies or research papers on this drug for BMS. But he said it's used all the time for central facial pain. And it is used for glossopharyngeal neuralgia, which I suppose is in the same area of the body, so why not. My dosage will be 200mg twice a day, after 100mg twice a day for the first week.

I definitely "feel" better on it, but I'm not sure if that's a loosening of chemicals in general (it makes me feel like I've had half a beer or so) or related to how the drug is supposed to decrease errant pain signals. At times when I'm paying attention to it, the burning is almost as bad as ever, along with the sour taste. So there's no real relief yet but I'm going to give this a couple of months just in case.

If this doesn't work, I'm going to push hard for paroxetine since at least that has evidence for helping BMS.

Still, I don't think the docs are able to explain the throat sensitivity part. So I'm not really sure I'm in the right place any more.

My employer is opening up a different PPO plan next year, where I'll be able to see any doctor at a somewhat reasonable cost (and there is an out of pocket maximum). I'm tempted to get that PPO plan then just go to a bunch of doctors until someone can figure it out.

So there's the update. No great news yet. But this is not a GERD/reflux problem, even though it was affected slightly by reflux early on. This seems like an ENT or neurological problem at this point.

Cheers to all.

I had some sexual side effects from the carbamazapine. At least, that's what I think they were from -- the doctor insisted that that's a very rare side effect, and none of his colleagues have heard of it. I did not have ED per se, but I definitely noticed a lack of sensation that made climaxing hard. Also I felt less of a desire to have sex.

Anyway. The final dosage I was on, 400mg a day in 2 doses, was helping slightly. I know because I decided to titrate off (with my doc's supervision of course) to see if my sexual side effects would go away and how my BMS symptoms were. Sexual side effects gone, BMS slightly worse.

So I asked him via email if I could try Paroxetine (Paxil, an SSRI). He said that since I had sexual side effects with carbamazapine (Tegretol), that he would not recommend I try Paroxetine since the sexual side effect incidence is much higher with SSRI, like 30%+.

He suggested I look into either Remeron or Wellbutrin (buproprion). I did some Googling and found some (not a lot) of evidence of buproprion's use for neuropathic pain, and it actually seemed to increase people's sex life in positive ways. So I decided to try it. Another reason I wanted to try it was that it acts as a dopamine reuptake inhibitor.. so I thought it would be SOMETHING similar to pramipexole (which in one case study has cured a woman's BMS).

I'm on my 3rd pill (third day). Initial dosage is 150mg of Buproprion XR (made by Actavis) once a day for 7 days, then two of the 150mg once a day thereafter for a final dose of 300mg once a day.

One immediate thing that I like, though I wouldn't say I've felt any noticeable relief, is that I'm not having the drowsy/tired side effects that I got with every other drug I've tried for this (except carbamazapine, I didn't have anything other than some balance issues and the sexual effects).

So, I like the drug so far since it's not doing any harm that I notice. I've read effects could take many weeks to notice. So we'll see how it goes.

I've noticed another symptom that I'm not sure I've mentioned before here. But I am now certain that I have headaches related to bowel movements. During the day I'll often get a headache, then after 1-3 hours, I'll have a BM and the headache will be gone. I'm not straining during my BMs, and I'm not "constipated". I have at least 2 BMs per day.

Also, if I'm having a BM but do not feel it's "complete", like there is some left that's just not coming out, I'll have a headache. Just had that experience this morning. Low grade headache for hours after a partial BM, came home, had a small BM and headache is gone.

I don't think I've mentioned this to my current team of neurologists. However, I have sought help from a neurologist before for these headaches.. he ordered some scans, and they found a small mass near my optic nerve (so, that mass became the focus and not my headaches). They said the mass was nothing to worry about, and my headaches were never addressed.

I'm thinking it all adds up to a sensitivity problem. Caused by what, I have no idea. But I've had this experience with headaches as long as I can remember (20+ years). So maybe this burning tongue/throat nonsense is just a progression of that.

I don't have much faith that the docs will be able to tie all these together, I can see them offering me some more meds for headache.

I inquired with my primary care doc about allergy testing. She said it's done by RAST testing, not skin prick, and that insurance may not cover it.. but she said she'd be willing to order it for me. I certainly don't have any normal allergy symptoms, so I'm really thinking it wouldn't show much. But I may give it a try if this wellbutrin doesn't work.

That's all for now. What's funny is I think this really has nothing to do with GERD at all. But GERD seemed like a reasonable explanation for it early on.

Don't know if you read my entire story (I wouldn't blame you, it's very long). But my reflux score was low to begin with. Had a Nissen fundo, and symptoms persist.

At this point in time, I do not believe I have enough reflux to cause my symptoms. Nor do my doctors, in fact they never believed I had enough reflux to cause my symptoms.

They have not explained the cause of my symptoms at all. It's idiopathic.

Since I am well outside the demographic of who gets BMS, I have thought long and hard about why I would have it. One possible explanation, which I haven't run by a doctor (really, I don't think they would have anything strong to say one way or another), is that:

I had a high # of weakly acidic reflux episodes, that did some damage to the tissues of the throat and perhaps somehow the tongue. It resulted in my main symptom of globus. I let that symptom go on for 1.5+ years, never seeking treatment and perhaps doing damage that has not been undone.

If I had sought treatment for the globus immediately, which was omeprazole, maybe my system would be in better shape and I would not have the symptoms I'm having.

Primary BMS is considered idiopathic.. they don't know what causes it. But in all I've read to this point, BMS is not related to reflux. It may have been something else, which I am unaware of, that caused these neurological symptoms, other than direct exposure of the tissue to reflux.

This was a timely message. I tried bupropion (wellbutrin) for 4 weeks. It did seem to help, slightly, and it was without the drowsy side effects, however it had a side effect of anxiety for me that was not worth the slight improvement. So I stopped, and I can confirm that it was helping and that it was causing anxiety.

Next week I see my neurologist again. I have asked him if I could try duloxetine (Cymbalta) which is now a generic. It has been shown in a few case studies to have resolved BMS in certain people. It has a lower risk of sexual side effects compared to the other known/studied treatments for BMS. If I can tolerate the side effects of that one, which I will really try to do, I'll attempt to stay on it for at least 12 weeks.

I'll update after the appointment.

Hi Pat - I've done fine with the fundo. For me, the key benefit is decreased belching. I think due to the HH repair.

I've only had one major time of discomfort, a couple of weeks ago where I overate at a Chinese buffet. I couldn't seem to burp and was feeling lots of uncomfortable bloating.

Other than that, no problems with the fundo.

I'm currently taking Duloxetine (Cymbalta) 60mg/day, it has evidence for helping with BMS. So far I believe it's working OK after about 6 weeks. One paper showed that after 4 months, a person had 40% decrease in pain, and in another few months, complete remission of pain. Duloxetine has a good side effect profile.. not much tiredness, and no noticeable sexual side effects.

drtinsac
Thanks for the update. Regarding the fundo, would you do it again if the circumstances were the same. Are you happy with the outcome (except BMS). Friend, you have had quite a journey. Thanks. Pat F

Hi there Drtinsac i got the fundo too big problems seem to be white tongue and some lpr symptoms back its killing my mind i cant burp but i have lpr hows that :) have same white tongue with lots of tests done but it is not candida an i cant shalke it off could use some help .nissen done 6 months ago