drtinsac journal - GERD/LPR - part 2

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drtinsac
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Date Joined Apr 2012
Total Posts : 458
   Posted 3/19/2013 9:16 PM (GMT -6)   
I feel kind of silly making a "part 2" of my journal thread, but the first one was locked today. I do not understand why thread on this forum -- where people continue to contribute useful information -- needs to be locked, simply due to it's length. But oh well.

Here is the link to the original thread. The first post contains most of my detailed reflux test results.

www.healingwell.com/community/default.aspx?f=45&m=2543232

---

Nothing much to add here, almost 9 weeks after surgery and currently on Omeprazole 20mg 2x/day plus Ranitidine overnight. My voice quality seems better the past few days than it has since the fundo, it's deeper, stronger, like it should be.

My throat tightness also seems to be decreasing. Still have strong sour taste and tongue burning though, which diflucan didn't help when I tried it before, and I suspect candidiasis has some role in it. I should have my post-op barium swallow soon which should confirm that the surgery worked, then I'll be left to consult with either an ENT or GI about my continued symptoms.

drtinsac
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Date Joined Apr 2012
Total Posts : 458
   Posted 3/21/2013 8:32 PM (GMT -6)   
My barium swallow is scheduled, April 25 :( . Long ways off. My surgeon's NP wants to refer me to GI clinic for medical management of my symptoms.

My throat has felt great the past few days, and my voice is doing better too.

I'm sure that acid was responsible for my globus due to almost instant response to taking acid blocking med. But I am less than sure if acid has anything to do with my sour taste and burning tongue. Those two things only started after I started taking acid blocking medication, which also caused a white coated tongue which eventually decreased. But apparently candidiasis can cause tongue burning and funky taste. In my original post on the old thread, I described how my ENT on my first visit, did a TNE and found budding candida on the back of my tongue. I was diagnosed with esophageal candidiasis and put on diflucan for 21 days. No effect on anything that I noticed, and next ENT visit, another TNE and a different doctor said there's still stuff there but it doesn't look like a budding infection. I could see in the monitor there was still lots of white gunk on my tongue in the back.

I'm left to wonder if perhaps, with my body's chemistry, that when I take acid blockers, the flora/fauna is thrown off and candida or some other fungus is free to reign. I found a paper the other day where they analyzed factors associated with candidiasis on hospital check-in, and "having taken a PPI" was their strongest finding. There is also evidence that acid blocking medication can block complete absorption of diflucan (at the time I was taking diflucan, I was also taking 40mg omeprazole 2x/day).

That said, I'm going to start properly tapering down off my acid blocking medication. Right now, and for the past 1-2 weeks, I've been on AM and PM omeprazole, and a ranitidine before bed. I'm going to cut out the PM omeprazole for at least 10 days, and continue with the AM PPI and the zantac before bed. Then I'll try an every other day thing with the PPI and continue with ranitidine overnight.

I'm also going to visit my PCP and get her take on all this tongue burning stuff. She is the one who first diagnosed me with GERD based on my having a tight throat and really no other symptoms. Maybe we can try a combination of diflucan and some oral rinse to kill candida, or maybe she can order me some other tests.

drtinsac
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Date Joined Apr 2012
Total Posts : 458
   Posted 3/22/2013 10:11 PM (GMT -6)   
Saw my PCP today. Anyone who has read any of my other thread knows that I am the type of patient who goes into a doctor's office once I've figured out that they can do something about it.. and I usually have an idea, right or wrong, as to what that should be.

I went in today with the idea that candidiasis was causing my tongue burning and sour taste, due to those white tongue coatings that are definitely connected to my starting acid blocking medication. The dr. didn't think so, said she couldn't see any white stuff on my tongue (I guess it's bad for me that I've been brushing it regularly lately), though I know there is some on the back.

She went down the road of trying a different acid blocker, pepcid (famotidine). She told me to take one per day.. the normal dose for GERD is 2 per day, but she says that's for people with major issues (I guess she doesn't know what globus is like). No mention of tapering down PPI, just stop it and start with 1 a day pepcid. Needless to say I am still planning to wean off the PPI before stopping, but I will certainly substitute pepcid when I need it.

She also ordered some blood tests, for magnesium and B-vitamins. This is good, I've never been tested for these and she says that PPIs long term can cause shortages (and I'd imagine that double doses of 20/40mg Omeprazole could contribute more than a regular 1x/day 20mg dose).

Like I did on my last thread, I'll post all the test data as I get it.

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/23/2013 9:41 AM (GMT -6)   
Drtinsac. Thanks for your postings and thoughts. It addition to magnesium and "B", don't forget iron, ferritin, calcium, potassium, especially "D". We have found that these are deficient overtime while on PPI's. (our diet is extremely rich in vegetables--raw and steamed, whole grains, chick and salmon,-- haven't had beef, fried foods, coffee, tea, carbonated, alcohol in well over two years and don't eat out to avoid problem food, gluten free, dairy and egg free, no soy). So frustrating. Yes, I sit out in the sun and take appropriate supplements. (And the smell of good coffee still drives me nuts, I want some so bad and the low acid kind not worth my time).

You have the right approach in preparing ahead for your doctor appointment. I think you are a researcher as so many are on this site. Some doctors appreciate that and some do not. Found a few that are put off when you express your thoughts (diagnosis).

I am significantly up in age and have seen the changes with the use of information available from the Internet. I research, write symptoms, questions down from most important to least, list supplements and medicine, and hand this sheet to my PCP. He quickly reads and seems to appreciate it and has said he wished more patients did this. He is younger in age and more current & up to date and familiar with reflux, medical and alternative models. He's a keeper to me. Will last me through my lifespan unless he moves.

We take one day at a time. This is an awful disease and very complicated. We are going to start asking for a doctor that has experienced GERD personally,-- not the one that says they take Tums occasionally. I know you know what I mean. 🌺🌺🌺

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/23/2013 10:09 AM (GMT -6)   
Thanks to linxcurious

http://www.ncbi.nlm.nih.gov/pubmed/23265358

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/23/2013 4:08 PM (GMT -6)   
drtinsac -- Have you had the blood work yet? With the concerns you have about candidiasis, you really should add the IgA, IgG, and IgM. Might give you a little more insight. There are two forms of candida -- the normal, spore form, and the tenacious, systemic mycelial form. You might have a localized infection, or a more pervasive one that can cross organs and even attach to bone...making resolution more problematic than a short-term course of an anti-fungal like diflucan can manage.

I have an appointment next week with my GP to discuss this, as I have positive antibodies and continuing non-specific symptoms. I just started my own diet/homeopathic treatment this past week, and will suggest a 14-day course of voriconazole.

The antibody tests aren't 100%, but they may give you a better indication for follow-up. You won't need another appointment to get these added to the order...just stop by the office and one of your doctor's assistants can write them in.

-Bruce

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 3/23/2013 4:49 PM (GMT -6)   
i started having also the sour, vomit taste in my mouth after ppi also. I have it every day, this is disgusting.
I also have the taste of my food after eating it for a couple of hours. I tried double doses of ppis and its worse. I tried to lower the ppi, but my heartburn got worse and my throat started burning.
this is hell

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 3/23/2013 5:35 PM (GMT -6)   
Hi Bruce - age the IgA, igG and igM all specific for candida, or do I just say I want those tests too? I will ask for them, just want to be clear about what I'm asking for.

I did get a nonfasting blood draw yesterday, but I go back next Thursday for a fasting test which I believe are some of the B vitamin tests.

Thanks.

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 3/23/2013 6:42 PM (GMT -6)   
IgA is the most abundant antibody produced by the body & is in the blood and surface of all mucous membranes which includes the GI tract. LOW IgA has shown increased infections of ears, lungs, GI tract, anemia. It has been associated with celiac and UC. Celiac and food allergies, malabsorption have been tied to GERD too. Wonder what part PPI's play in the production of this antibody !

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/23/2013 6:57 PM (GMT -6)   
You want the candida-specific IgA, IgG, and IgM tests.  They're standard, and all labs should carry them.  Each one relates to a different aspect of the infection.
 
For some interesting reading, Google "candidiasis" or "candidemia," and "dysphagia."
 
-Bruce

BEACH-GIRL
Regular Member


Date Joined May 2012
Total Posts : 467
   Posted 3/25/2013 5:04 PM (GMT -6)   
bcfromfl,

What would a low IgA test mean? Mine came back "Low".

Thanks for the info.
BG

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/25/2013 6:34 PM (GMT -6)   
Hi BG --
 
You just had a single antibody test for candida?  A "low" reading would be <1.0, with no antibody detected.  The relevance for each test is as follows:
 
IgG = indicates a past infection
IgA = superficial, localized mucosal infections
IgM = indicates a present infection
 
The following notes were included on my lab results, and bear mentioning:
 
"Systemic candidiasis is often characterized by markedly elevated levels of IgG, IgA, and IgM recognizing Candida.  However, interpretation of Candida antibody levels is complicated by detection of antibodies in 20-30% of healthy individuals, and blunted antibody responses in immunocompromised patients at risk for systemic candidiasis.  Candida antibody results should be considered within the context of clinical findings and results from other relevant laboratory tests, such as Candida antigen detection and/or culture."
 
This is why I warned above that aren't 100%, but can give someone a bit more "ammo" to proceed further in a diagnosis.
 
-Bruce

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 3/26/2013 7:38 AM (GMT -6)   
Got some lab data back. Magnesium normal. B12 elevated:

VITAMIN B12 1056 normal range: 211-911 pg/mL

My doc says to lay off any B12 supplements I was taking.. the only thing I can think of is a kids multivitamin, so I'll stop that.

edit. Just read one site that B12 supplements will not cause high B12. Hmm. I'll definitely investigate this further today. I emailed my doctor back that the only thing I was taking was the kids multivitamin, which only has 100% of DV per chewable tab.

Post Edited (drtinsac) : 3/26/2013 6:44:59 AM (GMT-6)


bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/26/2013 9:44 AM (GMT -6)   
Hi drtinsac --
 
I just spent a couple of minutes Googling "elevated b12 serum levels," and the possible causes cover a wide scope of conditions.  I would encourage you to investigate this further, although, FWIW, I am not impressed by your doctor's response.
 
The serum B12 blood test actually has very little relevance, and doesn't tell much.  Much more relevant are the methylmalonic acid (MMA) and holotranscobalamin tests, which allow a look into B12 metabolism.  High serum levels can indicate poor cellular metabolism.
 
If you haven't already, I would prepare a detailed summary of all of the symptoms you've been experiencing over the past five years...even odd ones, but pay attention to chronic ones.  The reason I recommend five years is that sometimes symptoms "morph" into something else, while still being part of an identical pathology.  If nothing else, do this for yourself, and you may discover some correlations.  I've found that no matter how good a doctor may be, or how pleased you are with the service, sometimes it's necessary to "point" them in a certain direction.
 
As I've said in the past, follow the trail of symptoms...
 
-Bruce

BEACH-GIRL
Regular Member


Date Joined May 2012
Total Posts : 467
   Posted 3/26/2013 3:55 PM (GMT -6)   
bcfromfl,

I had all three tested. The only one that came back low was IGA. Mine was 73. The range is 91-414. Have a follow up with my doc next week to discuss them.

You posed -
IgA = superficial, localized mucosal infections

What could this mean for me? Do you think it is related to my GERD, LPR?

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 3/26/2013 4:34 PM (GMT -6)   
Your lab uses a different scale than mine -- I don't know what your value means, other than, as you mentioned, it's "low."

Is it possible you are thinking about antibodies backwards? A low reading is good...it means your body hasn't produced antibodies as a result of an infection. Does this mean, by inference, that your IgG and IgM were perhaps positive for candida?

-Bruce

BEACH-GIRL
Regular Member


Date Joined May 2012
Total Posts : 467
   Posted 3/26/2013 4:44 PM (GMT -6)   
bcfmfl,

The other tests were in the "normal range"

harveblair3
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/26/2013 8:26 PM (GMT -6)   
I suspect candidiasis has some role in it.

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 3/30/2013 8:24 PM (GMT -6)   
10.5 weeks since fundo.

I haven't really noticed any improvement lately. I actually seem to notice more of that throat tightness now. Perhaps this is just the ups and downs of fundo recovery.

I did some drinking yesterday.. 2 beers, drank them slowly, and some whiskey on ice. Felt fine but later on, noticed throat tightness bothering me. I'd also been talking more, that could have irritated my throat too.

I've been taking one 20mg omeprazole in the AM, and a pepcid before bed.

I have a good white/yellowish coating on the back of my tongue. I am going back to my PCP on 4/4/13 to have a mole removed from my back; I'll ask her to sample that gunk on my tongue and find out what it is. I know oral thrush can cause taste issues and tongue issues.. globus too, I think.

I had a fasting blood test the other day for some other B vitamins, no results yet but I'll post them when I get them.

BEACH-GIRL
Regular Member


Date Joined May 2012
Total Posts : 467
   Posted 4/1/2013 4:24 PM (GMT -6)   
drtinsac,

Let us know what you find out about the white coating on your tongue. Also, anxious to find out about the labs too. Did you have vitamin D tested as well?
BG

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 4/1/2013 4:50 PM (GMT -6)   
I don't know if I had vitamin D checked.

I made another appointment tomorrow, before my mole removal, for the white tongue stuff. My PCP is not in, so I will see a new doctor. That will actually be good, maybe he will have a different take on it. I'm going to ask him to give me some topical/lozenge, or systemic, or both to try to get rid of this. And I'll ask him if he can send the white gunk off to get tested (my PCP replied to my email asking for candida tests and suggested she could send it to the lab next time I came in).

I read on another forum that someone had white gunk, bad taste in back of throat, and erythromycin 3x/day for 10 days was prescribed for it and it worked. It's among the following link if anyone cares to read.

see the post by "letslearn"
ehealthforum.com/health/topic116707.html

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 4/2/2013 6:58 PM (GMT -6)   
b1 and b6 are normal. The doc I saw today said the slightly elevated b12 was nothing to worry about. The doc was good, lots of questions, looking at UptoDate website, lots of time spent (20+ minutes, which I never get).

He looked at the gunk on my tongue, scraped some off and said he didn't think it was a fungal infection. He said if it was, typically there would be blood under the scraping and it would be painful. But he did give me a prescription for swish and spit nystatin, 4x a day for 10 days, just in case.

When I go back for mole removal Thursday, if there is still gunk there and she describes to send some to the lab, my regular PCP can do that.

He also ordered many other tests, immunoglobulin, some other tests related to my immune system. Even an HIV test (when the subject came up, I told him I was not in any risk group). Anyways it will rule that out. I never get sick, besides this reflux, or whatever stuff. Never get the flu, colds so I'd be surprised if my system was lacking a strong defense system.

So that's where I am now. I've been off omeprazole for 3 days now, I'm feeling the throat tightness come back but I'm taking the pepcid to help with that. Hope the tightness is just a result of rebound reflux.

Post Edited (drtinsac) : 4/2/2013 6:01:02 PM (GMT-6)


BEACH-GIRL
Regular Member


Date Joined May 2012
Total Posts : 467
   Posted 4/3/2013 6:08 AM (GMT -6)   
drtinsac,

Ask them to order a Vitamin D and magnesium blood test too. Both of them can be low due to taking the PPI. If you are low, it will make you feel better once you get your levels back up.
BG

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 4/7/2013 2:57 PM (GMT -6)   
Got all my blood work back. HIV negative. The only non-standard result I got, other than the slightly elevated B12, was slightly elevated igE which I understand is related to allergy. But its not such a high result as to be alarming apparently.

The temp doctor (not my PCP) who ordered that test said of all the tests he ordered "They're all normal". But since igE is slightly high, I'm going to check with my PCP to see if there is anything we can try for it.

For about the past 3 days I've been taking one Pepcid 30 mins before breakfast, and a Pepcid right before bed. I've noticed that since I've been down to such a low dose of acid blocker, I have more chills than I had when acid was controlled. Today, I'm noticing more hunger when I shouldn't really be hungry like 90 minutes after eating. I think all that is the result of more stomach acid. My throat/globus sensation hasn't seemed worse or better though. The tongue burning is still there, and the acid taste in my throat is still there, if not slightly more noticeable now.

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 4/7/2013 7:15 PM (GMT -6)   
just glancing at this thread,
 
a few ideas to help you gerd sufferers.
 
white coated tongue, could be just a general inflamation response, doesn't have to be candida. if nystatin rinse doesnt help then its probably not candida.  u need to be careful with nystain rinse if you have throat reflux, since it has a low PH, could end up burning your throat.
 
you might want to treat for sibo, try looking at the fodmap diet or paleo.  staying low carb, and no sugar will help with this (also helps candida infections too). diet usually plays a big role in treating GERD.  so you need to figure out food sensitivities, etc. once u get the right diet, the white tongue goes away.
 
the other facet, not mentioned was neurogenic causes of reflux.  burning tongue, acid taste might be neurogenic in nature.  problem with neurogenic reflux it can feel the same as normal reflux, elavil is the one most commonly used.  if your issues have neurogenic orgins, they too need to be handled.
 
 
 
 
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