10 month sore throat...not caused by stomach acid. What else could it be?

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lostsub
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Date Joined Feb 2013
Total Posts : 49
   Posted 8/2/2013 10:15 PM (GMT -6)   
Hello all,

I'll try to be brief. For ten months, I have had a sore throat. I always feel it, but it gets much worse with even minimal talking. In December, after getting an endoscopy, I was diagnosed with non-erosive reflux disease. Three months of PPI therapy and lifestyle and diet changes made no improvement, and neither did an additional four months of 80 mg a day of a variety of different PPIs, including Nexium. I don't have seasonal allergies, and just to check, I tried using a nasal spray to help with non-existing post nasal drip, but that also did nothing, and a test was done to rule out food allergies. I live overseas, and had to come home to see what could be done.

A GI at the Cleveland Clinic was a bit skeptical that reflux was causing the symptoms, as was an ENT at the Clinic, who performed a laryngoscopy and said that while it might be reflux, the "usual signs" weren't there. (For the record, major signs of LPR--hoarseness, chronic cough, globus--have never or almost never been present.) I myself was also skeptical because I generally eat healthy, low-acid foods and am in my 20s (and yes, I've read loads of research by Dr. Jamie Koufman). A 48-hour PH Bravo test was performed, and the results came back negative. I do not have acid reflux, according to the GI.

So...what could it possibly be???

Just for searching the web, I'm thinking it could be irritable larynx syndrome, laryngeal sensory neuropathy, hyperfunctional dysphonia. There is much, much less research online about these conditions than laryngopharyngeal reflux disease. Has anyone had any of these? What do you think it could be? I'm leaving for overseas again in a few weeks, and so I'm running out of time.

I have an appointment with a very well-respected voice scientist at the Cleveland Clinic, so hopefully I'll finally be able to get some answers and help. But in the meantime, any thoughts would be appreciated.

TheSiXness
Veteran Member


Date Joined May 2012
Total Posts : 541
   Posted 8/3/2013 12:49 AM (GMT -6)   
If they truely wanted to rule out reflux, then having a bravo study done wouldn't have been the best way to go. It doesn't take in account how far up the reflux is going... aka your throat or whether or not the content coming up is non-acidic. It would be very difficult to diagnose LPR with a bravo study alone.
-TheSixness-

lostsub
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Date Joined Feb 2013
Total Posts : 49
   Posted 8/3/2013 8:00 AM (GMT -6)   
I appreciate your thoughts, but I'm not sure I agree. Wikipedia refers to the Bravo test as the "gold standard" for diagnosing reflux, even LPR. I mentioned to the nurse my concern about the test being able to detect acid in my throat and not just my esophagus, and she replied, "The throat IS part of your esophagus." The following websites mention the Bravo test being used to diagnose LPR:

http://ezinearticles.com/?Are-You-Suffering-From-LaryngoPharyngeal-Reflux-Or-LPR?&id=1718488

http://www.entnet.org/HealthInformation/GERD-and-LPR.cfm

PS The capsule, I believe, was placed near my UES, not my LES.

PSS I haven't eaten fast food since high school, didn't drink much in college or after, can count on one hand the amount of times I have had a cup of coffee, generally don't like spicy food (unless it's Korean), don't smoke, am not overweight, have beef about once a month and pork 2-3 times a year and don't like candy, cake, etc. I have also given up chocolate and dairy products in the past year.

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 8/3/2013 8:55 AM (GMT -6)   
Hi,

If I were you I would get a restech airways study done - this is the only reliable study for LPR nowadays, it will show if you are refluxing right up into your throat even in a gas form whether acid or alkaline. Try emailing the company and asking them where the nearest consultant to you is for a test.

I wish you good luck.

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 6232
   Posted 8/3/2013 9:12 AM (GMT -6)   
Do you snore? I know that sounds ridiculous but snoring can cause a sore throat, too.
Lanie

diabetes moderator
diabetes type 2 controlled so far by diet and exercise
very low carb way of eating

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/3/2013 10:10 AM (GMT -6)   
Hi there. I don't snore. The most obvious symptom is the discomfort when talking; I think voice specialists call this a dysphonia.

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 6232
   Posted 8/3/2013 10:21 AM (GMT -6)   
Have you seen an ENT then?
Lanie

diabetes moderator
diabetes type 2 controlled so far by diet and exercise
very low carb way of eating

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/3/2013 10:27 AM (GMT -6)   
Hi, Lanie. Technically, I've seen four ENTs from four different countries. One was "99% sure" my irritation was being caused by reflux, but this was based on him looking without larynoscopy. Like I said, the ENT in America (who conducted a larynoscopy at the Cleveland Clinic) is a bit skeptical that it's acid reflux. (The ENT said it might be hyperfunctional dysphonia, a voice disorder, and so that's why I'm going to a voice specialist.)

I'll meet with the speech scientist at the Clinic in a few days. He's been on lots of news videos and programs. I'll discuss with him the ResTech tool. Here's some videos I found on it:

http://www.youtube.com/watch?v=JwolTjGUfCE&autoplay=1

http://www.youtube.com/watch?v=Jh3ize5iVR4

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 8/3/2013 10:28 AM (GMT -6)   
I have a similar problem lostsub. But mine started when i had the Bravo probe with voice loss and a lump sensation, then the sore throat when i try to talk. I have also been told that the Bravo probe is not a good test for LPR. Mine showed i didnt have reflux anyway yet my ENT from Ohio State gave me that diagnosis. He said that reflux into the throat happens so fast and that the Bravo probe doesnt register it the way a 24 hour empendence test does. I tried that test but couldnt get the tube down the nose so i have to try it again.

I failed to respond to acid blockers as well, in fact they made my throat much worse so i have been diagnosed with irritable larynx syndrome. I took amitriptyline one day and the side effects were horrible. I will probably have to take neurontin at some point but i am dreading those side effects because in the meantime i have lots of other digestive issues.

Let me know what the Cleveland Clinic says. I was going to go there myself because i live in central Ohio, but i went to OSU instead. Feel free to contact me by email. I think if you click on my name my email comes up.

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/3/2013 10:43 AM (GMT -6)   
Thanks, lobstahguy, and I'm sorry to hear about your troubles. I'll keep you updated via email about what they say at the Clinic.

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 8/3/2013 10:51 AM (GMT -6)   
Please do. Do you completely lose your voice?

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/3/2013 11:00 AM (GMT -6)   
I haven't lost my voice. I actually haven't lost my voice in almost two years. Like I said, while I do have a persistent, chronic sore throat, I don't or almost never have most of the typical LPR symptoms, e.g. globus, cough, frequent clearing of the throat, regurgitation, lost voice, hoarseness, etc.

How about you?

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 8/3/2013 11:29 AM (GMT -6)   
I have all of the LPR symptoms, globus,  excess mucus, throat clearing, sore throat and loss of voice.  The thing is though,  this happened while i had the Bravo probe in.  I never have felt any reflux ever in my life.  Rarely had heartburn and the fact that my symptoms came on overnight during the Bravo probe leads me to believe that i have irritable larynx.  My ENT has given me two seperate diagnosis which is frustrating, LRP and irritable larynx.  Until i can rule out LPR i am in limbo. 
 
The problem is, i cant seem to handle any medication they give me.  The acid blockers gave me a massive candida infection and caused my liver bilirubin to go up to 2.4.  Normal is under 1.5.   Plus, they made my throat hurt so much worse.  I had to use a notebook to communicate the whole time i was on them.  At least now i have some voice,, although it is painful and doesnt last long.
 
So, i have to have an endsocopy on the 15th and depending on what it says i am going to request the 24 hour ph empendence test again to rule out reflux. 
 
My problems started down in my right side near the gallbladder last september.  I travel alot and the last trip i made i had alot of pain there.  My local hospital was going to remove my gallbladder based on my symptoms alone so i requested the scope, but i did not want the Bravo probe.  That was March 4th and my life has been a living hell since then.  I can handle being sick, but i have lost my voice, feel like im choking, sore throat from hell etc.  Its been terrible.  How bad is your sore throat?? On a scale of 1-10??

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/3/2013 11:42 AM (GMT -6)   
Wow, that is frustrating. Your symptoms sound much worse than mine. Like you said, you have the "typical" LPR symptoms. Have you tried the Koufman diet and all the "lifestyle changes"? I'm sure you've read information on this website about the different surgery options, if your diagnosis is determined to be LPR and if medication and lifestyle changes have not been helping. Like I said earlier, supposedly the Bravo test is the "gold standard" for diagnosing reflux, but several on this thread have mentioned that there's a newer ResTech tool that supposedly provides a clear diagnosis. Maybe you can discuss with your ENT and GI both of these tests.

As for irritable larynx syndrome, I want to make clear that I'm not a doctor and try to avoid giving medical advice, but these two websites might be interesting to you:

http://www.npr.org/templates/story/story.php?storyId=128359885

http://abcnews.go.com/Health/functional-dysphonia-vocal-cord-massage-brings-moms-voice/story?id=13613861

On the weekend, when I'm not using my voice, I'd say the sore throat is in the 2-3 range. It's a nuisance that I feel it, especially for 10 long months, but it's tolerable and I'm used to it. But during the week, even when I talk minimally, like a few sentences, it starts to become bothered. And if I've been talking all week, which as a teacher is necessary, then my throat is in the 7-8 range, to the point where I'm angry. How about you?

PS Some folks might say, "Well, you're a teacher. Of course you have sore throats. Use your voice more efficiently." But as a language teacher, I only have about 15 contact hours with my students, and my lessons are designed so that they're doing most of the talking. Additionally, I have lots of vacations, don't have to pay for my car/housing, and don't have to pay taxes, so the whole "it must be stress" argument is a load of horsecrap.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/3/2013 12:12 PM (GMT -6)   
To the best of my knowledge and from what I have learned LPR is often referred to as silent reflux.

Although silent reflux is harder to diagnose than GERD, a doctor can diagnose it through a combination of a medical history, physical exam  and one or more tests. Tests may include:

  • An endoscopic exam, an office procedure that involves viewing the throat and vocal cords with a flexible or rigid viewing instrument
  • pH monitoring, which involves placing a small catheter through the nose and into the throat and esophagus; here, sensors detect acid, and a small computer worn at the waist records findings during a 24-hour period.

I think we all will be waiting to hear what your learn at your next appointment with Cleveland Clinic.

Here is a link to the company info for Restech:

http://www.restech-corp.com/measurement-system.aspx

 

 


~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 8/3/2013 3:51 PM (GMT -6)   
The pain in my throat approaches a 10 at times. The more i talk the worse it gets until my voice just goes out. Its seriously driving me mad along with the globus sensation. I have to take ativan and it doesnt help like it should because i have built up a tolerance.

I will check those sites out on irritable larynx. Neither LPR or irritable larynx is fun and most people have no idea how hard it is to live with. Stay in touch, use my email if you can since you are going to Cleveland i am very interested in what they find and tell you. Thanks

drtinsac
Regular Member


Date Joined Apr 2012
Total Posts : 458
   Posted 8/3/2013 6:13 PM (GMT -6)   
I also have sore throat and discomfort after a bit of talking, which I thought was caused by reflux but wasn't (I had a fundoplication even with low reflux score on 24 hour test).

I recently saw a neurologist and they seem to think it's some pain hypersensitivity, perhaps affected by a titanium implant. They ordered lots of blood tests and also told me I had a very high pain tolerance (fingernail bed pressure, and achilles tendon squeeze threshold), which I think is part of the problem (yes, it's the opposite of what I would expect).

Do you have any other symptoms? I have a few.. chills, burning tongue, persistent sour taste, and throat soreness/tightness. However, before surgery the PPI helped my throat tightness about 80%. Now it's not as effective, but I am better when I'm not on a PPI since I have next to 0 reflux now. I still take a PPI since it helps slightly.

I'm not sure how unique my case is, but if you've ruled everything else out, you might consider seeing a neurologist..

lobstahguy
Regular Member


Date Joined Jul 2013
Total Posts : 332
   Posted 8/3/2013 7:00 PM (GMT -6)   
Hello, not sure if that reply was meant for me or lostsub, but i will say that my ENT thinks i may have neuropathy or irritable larynx syndrome which means drugs that are very unpleasant and hard on the liver which is a problem for me. I keep hoping my throat will just heal, but it hasnt yet. I have alot of doctors visits ahead of me, but so far everything they have tried has made me worse. Literally

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/8/2013 2:51 PM (GMT -6)   
Hi everyone,

Thanks for your thoughts and concerns. I had an appointment today at the Cleveland Clinic Head and Neck Institute with a voice scientist and a larynxologist. They "ruled out" acid reflux based on the larynx exam and the results of the PH test. Their "best guess" is that it is a nerve issue, and so they have proscribed gabapentin. At this point, I'm a bit skeptical, considering this has been going on for almost a year and I've seen about ten doctors. But these two doctors are considered the best of the best in the state of Ohio, so if they can't figure it out, then no one can.

Incidentally, what also gives me hope is that so far, this sounds similar to two similar posts on these forums, found below:

http://www.healingwell.com/community/default.aspx?f=45&m=2184357

http://www.healthboards.com/boards/acid-reflux-gerd/825151-lpr-something-else-falsely-being-treated-acid-reflux-probably.html

I'll keep you updated on how the treatment goes.

Teacherman
Regular Member


Date Joined Jun 2013
Total Posts : 172
   Posted 8/8/2013 3:40 PM (GMT -6)   
You said you have had a sore throat for 10 months. We're you put on ppi's before or after the 10 month period.
The reason I ask, I too have suffered with crazy sore throat issues. However, mine started with the ppi's. I have Barrett's so stopping ppi's was not recommended . The opposite, increase ppi's. however, after trying a lot of different things with small successes, the one thing that stopped my sore throat completely was reducing my ppi's. last week I went from 2 per day to one. I had no rebound. In fact, my throat has not given me one second of trouble since the day after I stopped taking two ppi's per day.
You mentioned you tried nasal spray. Was it astepro? If not, try that. I tried others with no success. Finally an ENT suggested astepro. That helped a lot and stopping ppi's finished it up. I think I am allergic to ppi's. I still take one day. I have too. Barrett's. but, (keeping my fingers crossed) I dont have the t Throat thing happening. Just like that it went away. I have changed my diet. Sleep inclined and eat very small meals compared to what I used to eat.
What I do have now and it is going away, is a sharp pain in my lower rib cage. Comes and goes. It was strong for a few days but has gotten better in the past 2 days. Still there ....just barely. It occurred while still on two ppi's a day but started happening when I had to take generic vs. brand name protonix. Back on brand name but only one a day. In the a.m..
Have you tried to stop taking the ppi's. some say there is rebound. I had none. But, I believed I wouldn't have rebound. I've read otherwise, but didn't have it. I feel great in comparison to he way I have felt the past year.

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/8/2013 4:11 PM (GMT -6)   
Hi there,

I was on 40 mg four three months and then 80 mg for four months; I started taking PPIs after about a two months of the sore throat. Reflux from not enough acid is not unheard of, so I would guess that could be a reason why (though obviously, I am not a doctor). It's my understanding, though, that Barrett's is a last warning regarding reflux. Your sleep inclination and low-acid diet should help; have you talk with your doctor(s) about the Nissen surgery?

I noticed absolutely no difference whether I was on or off PPIs; this is what gave the doctors further skepticism that it is being caused by reflux.

I live overseas, so I can't remember the name of the nasal spray. It was just some anti-post nasal drip spray. My family doctor back home said that that's what he would have started with. I didn't notice any benefit from using this spray, however.

I'm happy to hear that you're feeling better!

Mindbodynsoul
Regular Member


Date Joined Jul 2013
Total Posts : 32
   Posted 8/8/2013 5:07 PM (GMT -6)   
I, like you, ate healthy all my life and had no diary, no take away foods ect, but still got reflux, I think it was caused by stress.

I had the sore throat, hoarsness towards the end of the day, really hard to swallow and felt like a lump I just could not swallow. Finally after 8 weeks on nexium and constant nasal irrigation things settled down. I am having my fundfo and hernia repair next Thursday and cannot wait. LPR is one of the hardest things to disgnose unless u have a very on the ball specialist willing to go that extra mile.

My breathing and throat symtoms were put down to asmtha and I was treated for that, with no relief and I was constantly stressed. I went off all all drinks except water and one coffee a day (that is it) it really helped me. No junk food whatsoever, and tumeric capsules for the inflammation.

Vit D level plays a big part in healing your body, so check ur Vit D levels. I looked back to when I first got sick and my Vit D lvls were very low. I have been taking 5,000 IU per day and now have the levels up to 100, so I have dropped back to the maintenence level of 1,000 IU per day. My general health has improved so much, just need to have this fundo and get some normality back.

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 8/8/2013 7:42 PM (GMT -6)   
Hi there. I tried Vitamin D supplements and didn't notice any improvement. I live in a desert, so I get plenty of Vitamin D.

My mother had a hernia which was causing her heartburn and a surgery (she can't remember the name of it) fixed it.

Are you sure your asthma isn't vocal chord dysfunction? Apparently, reflux causes VCD and it's misdiagnosed as asthma.

blahfoo101
New Member


Date Joined Jun 2014
Total Posts : 2
   Posted 6/30/2014 8:43 PM (GMT -6)   
Hey Lostsub,

Have you had any more updates on your condition? Out of all the symptoms I've been reading online, yours seem to match mine the most. I don't think my sore throat is nearly as severe as yours (mine seems to just hover at a constant, low 2-3 for most of my life), but my ENT also thought I had LPR and I'm not sure if that's the case.

Anyways, if you could update us on your situation, I'm sure a lot of us would find it super helpful. Thanks and good luck!

lostsub
Regular Member


Date Joined Feb 2013
Total Posts : 49
   Posted 7/1/2014 10:35 AM (GMT -6)   
Hi blahfoo101. I'm sorry to hear that you're suffering. This is such a miserable thing, isn't it?

Well, let me first go back to my initial post which was from last year. So the Cleveland Clinic (supposedly the "number one hospital in Ohio") diagnosed me with a laryngeal neuropathy (or nerve damage) and ruled out reflux. They gave me a drug called neurontin, which was initially developed to treat epilepsy but now is used more often for nerve damage. (There are essentially two kinds of pain, and if you have a neuropathy, chances are that pain relief medicines won't alleviate it.)

The problem was that neurontin didn't work. So I went back overseas (where I work 9 months of the year) and stopped taking all the medicine. Well, on September 26, 2013 (the EXACT one year anniversary of first having symptoms), I had terrible, terrible pain in the morning and I couldn't imagine how I would get to work. I really think I was on the verge of a breakdown.

As one ENT told me, if the medicine didn't work, either the patient had a wrong dosage or a stronger regimen is required.

So I flew back home to see an expert. They did five tests--one was an EMT, which gets a neurogenic reading of the throat, another to detect if there was pepsin (the enzyme that flows back up with acid and does the damage) in my saliva (there was), a transnasal videoscope, which showed several signs of reflux ("How could they miss this?" she said, referring to the Clinic), another to see if both esophageal sphincters were malfunctioning (they were) and an overnight tube that went through my nose and rested in my throat, to get records of acid exposure. All tests led the doctor to conclude that there was "no question" I was refluxing. My diagnoses: gastroesophageal reflux disease, laryngropharyngeal reflux, bilateral vold ford paresis and post-viral vagal neuropathy.

So how did this all happen and what does it mean? Well, the week of teaching last year was a very stressful one. I was teaching eight hours straight with no break and had one class with 40 students. I was exhausted, sick and my voice was gone. It turns out I had an upper respiratory infection, and it was so potent that it damaged my vagus nerve. The vagus nerve "runs the show." So, not only have I suffered from odynophonia (painful speaking) but also disphagia (discomfort when swallowing) and reflux (both heartburn and LPR), among other things (I've had about a dozen symptoms over the past two years). The neuropathy causes wrong signals to be sent to my vocal cords, causing them have a paresis.

So I was told to take more neurontin, to keep going until the pain went away, and was also proscribed elavil, which supposedly gives neurontin a boost. But I have gone to the max levels of neurontin and its cousin, lyrica, and have tried other kinds of narcotics like tramadol and klonopin. But nothing really seems to have helped with the pain. In addition, while the reflux is severally reduced, it has all done some damage to my system. My tongue became white and cracked, I suffered from irregular bowel movements, and I wasn't digesting nutrients properly.

My advice? First, if a GI says he's going to do a Bravo test, that may be fine to identify GERD but it is completely pointless when diagnosing LPR, so tell him he's an idiot if he says that's not true. You must get the test where the tube goes through your nose, down to your larynx, and stays there for a night. Second, don't be too afraid of treating the condition more seriously, but beware of taking these drugs long-term. PPIs can fundamentally change your system and they decalcify you. That being said, typically treating GERD involves 40 mg of PPI but treating LPR requires 80, anywhere from 1-6 months. I actually started at 40, then 80, then back to 40. I took Zantac as well, but now am off all of those drugs and haven't had too much of a rebound. Gaviscon and Gaviscon Advance can help, but also be careful about taking that for too long.

Additionally, you're doctor's not kidding: You need to fundamentally change the way you do things. You need to avoid eating and possibly drinking 3-4 hours before lying down. No heaving lifting/bending over right after a meal. Limit acidic foods (there are several reflux cookbooks out there), especially processed ones. Lozenges and chewing gum help, but they also have sugar and/or possibly dangerous chemicals. I prefer Arabic gum (which is pretty flavorless and non-toxic) and traditional Chinese lozenges (which taste disgusting at first but they've grown on me). Walking helps digestion (but running might make things worse).

Okay, now about the neurogenic pain. I'm currently seeing a holistic doctor in my hometown. He's given me probiotics and other supplements to help clean out my gut and given me another strict diet (that doesn't even include bananas or oatmeal). Some people say a vegan diet will help, but he insists that animal-based protein is essential for digestion. I'm not sure who exactly to believe. Because I hunch over, he thinks that it might be causing the bones to press against my vagus nerve and that could be why I haven't eliminated the pain. So the treatment involves decompression, back stretches, lidocaine injections in the neck, chiropractic adjustments, all three times a week. And yesterday I met with a personal trainer to see about getting some upper back strength.

Who to see? I'd say avoid the Cleveland Clinic. If you live in Virginia, the best is probably Dr. Chiang, although he only sees patients in Virginia (but you can email him for a fee). If you're in or near NYC, the best is obviously Dr. Koufman, but it will cost you. Or just see if there's a doc near you who has access to the tools these doctors have. And while the Affordable Care Act has rightfully banned the practice of denying patients coverage based on so-called pre-existing conditions, short term health plans (like the one I have) are exempt from this). There is a special place in hell for those insurance companies.

Sorry this is quite long. I've written about my experience a bit more in my blog: http://www.chrisandthemovies.com/2014/06/bigger-than-life-movie-that-speaks-to-me.html

Finally, if you're feeling down, my best advice is this: do a kindness, smile (even if you're not happy) and surround yourself with the people who make you happy. You'd be surprised just how effective these three elements can be.

If I can answer any other question, don't be afraid to ask. Feel better!
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