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    Old 01-18-2011, 06:47 PM   #1
    tofumix
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    Exclamation How long have you been living with lpr?

    Hi everyone!

    How long have you all been living with LPR? I am just curious to know, because I have LPR.

    Thank you!

     
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    Old 01-19-2011, 07:33 AM   #2
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    Re: How long have you been living with lpr?

    4 months with no signs of improvement, now my GI dr want me to get a larynx biopsy done, which I HOPE will be analized chemically, im going to have to fight for it i think not sure...

     
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    Old 01-19-2011, 12:19 PM   #3
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    Re: How long have you been living with lpr?

    I had it for almost 5 months now. I see you are going for a biopsy, I would not do anything drastic like that unless I get cancer. I really don't know what to tell my parents. My parents told me was that chronic inflammation can cause cancer. I guess I'll have to have my doctor check my nose and throat every year to monitor if cancer grows at what stage and has it spread anywhere else in my body. My doctor took a CT Scan of my neck and said that I won't get cancer. But I know chronic inflammation can cause cancer if let untreated. But my doctor said that there there's wasn't much treatment he can offer me because the red inflamed bumps were the same in my nose and my throat. The doctor just gave me PPI, H2 blocker, antacid. I'll have to think about having radiation therapy or chemotherapy someday. I hope I can live another 10-30 years having this horrible LPR disease. I am 23 years old now, hopefully I can live up to 50. Living with LPR is very uncomfortable and quality of life is diminished. Hopefully, I can save enough money for cancer treatment someday. This is very sad. I guess it doesn't really matter how long I'll be living. I feel sorry for my parents, because I was going to go before them and that I could not take care of them when they are old. My parents raised me up for almost 20 years with hard work and it seemed like LPR might be an illness that can take my life away just instantly. I wasn't sure if I'll ever marry or have kids. But if I do have kids someday, I just hope I can see them grow up. I also feel sorry for my brother too, I guess I'll have him take care of my parents when they grow old. Everyone is going to die someday, it's just a matter of time. Missing someone you love is one of the most difficult times in life, but with time people will forget you and just move on with their lives. Life isn't always that easy. But I guess God has something else to offer me.

     
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    Old 01-19-2011, 12:28 PM   #4
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    Re: How long have you been living with lpr?

    Quote:
    Originally Posted by tofumix View Post
    I had it for almost 5 months now. I see you are going for a biopsy, I would not do anything drastic like that unless I get cancer. I really don't know what to tell my parents. My parents told me was that chronic inflammation can cause cancer. I guess I'll have to have my doctor check my nose and throat every year to monitor if cancer grows at what stage and has it spread anywhere else in my body. My doctor took a CT Scan of my neck and said that I won't get cancer. But I know chronic inflammation can cause cancer if let untreated. But my doctor said that there there's wasn't much treatment he can offer me because the red inflamed bumps were the same in my nose and my throat. The doctor just gave me PPI, H2 blocker, antacid. I'll have to think about having radiation therapy or chemotherapy someday. I hope I can live another 10-30 years having this horrible LPR disease. I am 23 years old now, hopefully I can live up to 50. Living with LPR is very uncomfortable and quality of life is diminished. Hopefully, I can save enough money for cancer treatment someday. This is very sad. I guess it doesn't really matter how long I'll be living. I feel sorry for my parents, because I was going to go before them and that I could not take care of them when they are old. My parents raised me up for almost 20 years with hard work and it seemed like LPR might be an illness that can take my life away just instantly. I wasn't sure if I'll ever marry or have kids. But if I do have kids someday, I just hope I can see them grow up. I also feel sorry for my brother too, I guess I'll have him take care of my parents when they grow old. Everyone is going to die someday, it's just a matter of time. Missing someone you love is one of the most difficult times in life, but with time people will forget you and just move on with their lives. Life isn't always that easy. But I guess God has something else to offer me.
    yeah that's logical, im as scared as you are and im also in my early 20's im 22 i also hope i can make it pass 50's and without cancer, i dont wanna waste time with chemo and stuff like that, cancer is the worst disease one can die from. Have you had any tests like ph monitoring to see if it's indeed acid what's causing the chronic inflammation?

     
    Old 01-19-2011, 06:39 PM   #5
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    Re: How long have you been living with lpr?

    The thing was I was burning/stinging inside severely for a few months, so i know it is acid coming up from my stomach which happened at bedtime, which caused these red bumps inflammation. Like you said "cancer is the worst disease one can die from". The cancer from LPR could be far worse because it is inside the nose, throat, esophagus, stomach which is more life threatening. No, I haven't gone to see a gastroenterologist (GI) yet. My parents told me not to get an endoscopy done and told me that time will help me heal instead. I know it is caused by stomach acid because my vocal cords are also red and inflamed due to the acid burn. I am very scared too. My nose and throat feels very dry now, not sure what is happening. Is yours dry like that too?

    Last edited by tofumix; 01-19-2011 at 06:42 PM.

     
    Old 01-19-2011, 09:31 PM   #6
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    Re: How long have you been living with lpr?

    Almost 10 years for me. I will say that I have had long periods of time where it is completely under control and other times when it flares for a long time.
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    Old 01-22-2011, 12:08 AM   #7
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    Re: How long have you been living with lpr?

    About 5 years.

    My LPR started in the craziest way.

    I kissed a woman and woke up with a soar throat the next day.

    My sore throat has never gone away.

    I have the globous sensation in some way all the the. Sometimes it is worse than other times.

    PPIs didn't do crap for me.

    I take DGL licorice which definitely give me temporary relief and is supposed to heal the throat.

    I take 8 DGL tablets at a time and suck on them. It doesn't taste great, but I guess I will have to live with it.

     
    Old 01-23-2011, 05:08 AM   #8
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    Re: How long have you been living with lpr?

    Quote:
    Originally Posted by Giantsbran View Post
    Ugh boy. Guys, this is not normal.

    Sorry, but I do not think this is a acid problem.... You all need to get a 24 hour ph test to see if you indeed are having reflux. If not, chances are it is nerves. You would be very surprised.
    of course it's not normal it's LPR, we already know what it is about and "nerves" wont give you an acid taste and yellow saliva or an interarytenoid edema which is what i have in my larynx.

     
    Old 01-23-2011, 10:43 AM   #9
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    Re: How long have you been living with lpr?

    I know it isn't "normal" and that for some people, there may be other causes for symptoms, but some people actually do have chronic LPR.

    I've had 3 pH tests and have some of the most severe acid reflux 3 of my specialists have ever seen. My most recent test a few months ago showed I have acid in my throat almost 50% of the time in the gaseous form. It was atypical, but I even stayed on my meds during that particular test, ate well and slept on an incline.
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    Old 01-23-2011, 10:48 AM   #10
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    Re: How long have you been living with lpr?

    Quote:
    Originally Posted by MountainReader View Post
    I know it isn't "normal" and that for some people, there may be other causes for symptoms, but some people actually do have chronic LPR.

    I've had 3 pH tests and have some of the most severe acid reflux 3 of my specialists have ever seen. My most recent test a few months ago showed I have acid in my throat almost 50% of the time in the gaseous form. It was atypical, but I even stayed on my meds during that particular test, ate well and slept on an incline.
    Mountain i notice your sig says "hearing loss" what caused that? does LPR give you any ear symptoms?

     
    Old 01-23-2011, 08:54 PM   #11
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    Re: How long have you been living with lpr?

    I don't attribute LPR to the hearing loss. My right has had severe loss since birth...I was a tiny preemie. My left ear started losing hearing a couple years ago. I have 2 theories on that one. 1. It is just part of my aging. 2. I was diagnosed with TMJ last year. My TMJ discs had slipped forward and my lower jaw was pushed back towards my ears and the muscles around that area were spasming badly. My TMJ symptom at first was severe ear pain. Of course, all the coughing I've done over the years from the LPR can't be helping that at all so maybe there is a bit of a connection.
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    Old 01-25-2011, 03:55 AM   #12
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    Re: How long have you been living with lpr?

    Quote:
    Originally Posted by Giantsbran View Post
    Ugh boy. Guys, this is not normal.

    Sorry, but I do not think this is a acid problem.... You all need to get a 24 hour ph test to see if you indeed are having reflux. If not, chances are it is nerves. You would be very surprised.

    "Nerves" also never put me in the hospital for a week with Laryngitis, Pharyngitis, and Esophagitis. I've had 4 ENT's confirm that I did indeed have LPR, which has all but ruined my sinuses (for which I now need surgery) and vocal cords. So no, not surprised at all.



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    Old 01-25-2011, 03:58 AM   #13
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    Re: How long have you been living with lpr?

    It's been going on since my early 20's, but really reared it's ugly head about 3 years ago after gallbladder surgery. Had swelling and soreness if my throat that never quite went away.

     
    Old 01-25-2011, 04:30 PM   #14
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    Re: How long have you been living with lpr?

    I have to weigh in here in support of Giantsbran, because as you might recognize him from earlier posts, he was Xhale12.

    I might have the number wrong, but you can find Xhale anyway...

    He tasted "acid", he didn't think it started with a cold, he had a burning throat and thought that the dropping acid cookbook was helping.


    However, Jamie Koufman herself did the electrical test of the larynx nerves and found vocal fold paresis.

    So the point is, a lot of people who are tasting acid might not really be tasting acid at all. Xhale was sceptical that this could be nerves at first, but the doctor who coined the term LPR told him that he has no reflux at all. And put him on gabapentin and elavil.

    Yes, there are those who have LPR as a result of a hiatal hernia, or those whose LPR improved after surgery (though it seems rare that surgery helps, at least if you take these boards and the more recent journals that mention LPR surgery into account).

    What seems absolutely crazy to me is that Koufman lately, it seems that every single person on these boards who has within the last year visited her for LPR and then writes about it...... They get put on klonopin or elavil or neurontin or some combination of them.

    Then they attribute their inevitable victory over LPR to the fact that they started eating raisins or meditating, and add at the bottom of their post .. "oh yeah, and by the way, she put me on klonopin, which might be doing something as well..."

    I admit posts like mine or Giantsbran's would be frustrating to read if all the tests had shown that there was very justifiable cause to believe that acid was getting up beyond the UES. But how many times in the last 20 years has the explanation of LPR had to change, to suit the evidence? Several times!

    So what if these anti-depressants, tiny amounts of them, would help you? Would it be more comfortable for you to just believe its acid because you taste acid in the morning? So did Giantsbran. Koufman, the world's leading expert on this spectrum of diseases, put him on elavil and neurontin.

    Well, I would recommend you ALL try out a regimin like that, especially if you've ever given ppis more than a month to work. Doesn't something else deserve a try, even if it means re-writing and re-thinking everything you know about your throat problem?

    By the way, I had lpr since October 5th last year. For the last month, it's been about as bad as having a sore foot, or maybe more innocous. I was on lyrica for the last month, at my own recommendation to a neurologist in Germany. Back in Calgary, I told a doctor about it, and he just said, "Ok. If it's working, keep using it." He wrote the prescription.

    I tried the ppis, so I can knock them. I issue the friendly challenge to people with "LPR" that if they want to knock the nerve drugs and tri and tetra cyclic anti-depressants, then they have to give them at least a month too.

    Well, this will slowly come more to light anyway, in the next few years or decades....

    Last edited by Seeking Sunrise; 01-25-2011 at 04:34 PM.

     
    Old 01-25-2011, 05:39 PM   #15
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    Re: How long have you been living with lpr?

    in my case i highly doubt a nerve issue caused my larynx to swell up, my red pharynx and you mention "tasting acid" i not only taste it but my saliva is nasty, yellow plus acid taste that's obviously coming from my stomach, some people prob have nerve issues and get a wrong diagnosis but i doubt that's my case, im going to another city to see another ENT (my cousin offered to help me with money) i hope i can get ph monitoring and a manometry SOON to finally confirm the fact i have LPR, this friday i have an appointment for a biopsy (larynx) i hope they analize it chemically to see if there's pepsin in it...


    ps: did xhale ever taste acid? i dont remember seeing anything about that on his posts i have a bad memory though

    Last edited by neptunian808; 01-25-2011 at 05:44 PM.

     
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