New Diagnosis and Treatment for LPR

I am not a doctor and the below should not be construed as medical advice. The below is my opinion. Please consult a licensed physician before following any of the advice below.

There may be a new diagnosis and treatment for LPR. If you have LPR, the below is very important and you need to read this.


• I've had LPR for 4 years.

• I've researched this disease quite a bit and am familiar with some of the leading doctors who are doing research (Jamie Koufman, Peter W. Dettmar, etc.)

• Leading thinking is that LPR is aerosolized reflux carrying Pepsin, HCL and possibly Bile acids into Larynx area

• I've had 5 ambulatory dual channel pH/impedance tests and all were normal

• I've been on PPI's (all sorts of different doses, different brands and have added Zantac and Pepcid at times) and there is no benefit

• I've tried numerous diets, some with 20-60% improvement (MORE ON THIS LATER)

• I've been to Mayo Clinic in the USA and to no avail

- I've tried Gaviscon Advance (can only buy it in Europe, it has a different active ingredient (sodium alginate) than the USA version of Gaviscon). Even with the European Gaviscon...I received no help.


So, cutting to the chase. In the last year by coincidence, my wife (who is a wonderful woman and who is studying with me to try and find answers to this disease) and I observed that antibiotics improve my throat symptoms (hoarse voice and sore throat) 40-70% about 10 days after I take the antibiotics and the relief lasts for 2-3 months. This was not an easy observation as I was trying many other things simultaneously AND nobody is linking antibiotics to LPR (more on this later)...i.e. it's not in the medical communities heads, nor ours (those of us who have LPR) as there is no obvious link between antibiotics and reflux. Keep reading. The antibiotics I have taken were (21 day course of Cipro in July of 2013, Zithromax (little bit larger than normal course) in December of 2013 and Zithromax (normal course) followed immediately by Augmentin in April/May of 2014. Each time I have noticed relief of symptoms as described above. It took my wife and I awhile to figure this out...but the correlation is DEFINITE. Finally after 3 years of progressively getting worse and with symptoms such as a major, chronic hoarse voice and major, chronic sore throat. It was truly overwhelming (those of you with LPR, you know what I'm talking about)...I now have something to work with.


So what does this mean? I'll get to that later. First I want to encourage all those with LPR (YOU MUST HAVE TRUE LPR...i.e. throat symptoms with NO heartburn symptoms and/or PPI's do NOT HELP AND/OR YOU HAVE HAD AT LEAST TWO AMBULATORY PH DUAL CHANNEL TESTS OFF THERAPY WITH *NORMAL* RESULTS...IE...REFLUX WITHIN NORMAL BOUNDARIES) to ask your doctor to TRY a 21 day course of CIPRO or a course of Zithromax (preferably a bigger than normal course). Then wait 5-10 days AFTER the course is over and see if you have improvement of symptoms. Regardless of your results, MAKE SURE you share your experience on this THREAD. Write down the link to this thread if need be...your experience is going to be very helpful for those of us with the type of LPR mentioned above.

Ok, so what does this mean? My best understanding at this point is SIBO (small intestinal bacterial overgrowth). Want to know more about SIBO, go to Dr. Allison Siebecker's SIBO site: http://www.siboinfo.com/dr-siebeckers-bio.html. Before you dismiss this idea (from my experience, the medical community is already dismissing it), let me remind you that based on my observation, there is a definite correlation between my LPR and antibiotics. The correlation as mentioned before that results in 2-3 months of 40-60% improvement in symptoms. And again, whatever the reason...this is something to work with. In short, the bacterial overgrowth in the small bowel produces gas (Dr. Peter Dettmar in an article he co-wrote entitled Reflux Revisited: Advancing the Role of Pepsin (http://www.hindawi.com/journals/ijoto/2012/646901/) hypothesizes that Pepsin is carried to the larynx area via aerosolized gas). If the bacterial overgrowth is producing gas, could this be the gas that is carrying with it, tiny particles of Pepsin (also in gas/mist form) to the larynx area? Why did I improve so much after a course of antibiotics? There is a definite correlation and it cannot be ignored. Also, remember in the beginning of this post, when I mentioned diet has helped me from time to time (but not with the same measure of improvement and for the length of time that antibiotics do)...the food we eat also DEFINITELY affects happenings of our GI tract and for those with SIBO, DEFINITELY affects the bacterial colonization in the small bowel. To what degree and under what type of diet restrictions? That is a conversation for another time (there is lots of info on this, refer to Dr. Allison's Siebecker's SIBO site: http://www.siboinfo.com/dr-siebeckers-bio.html and read Elaine Gottschall's book Breaking the Vicious Cycle).
My friends, the correlation between diet, antibiotics and the relief of my symptoms is too great to ignore.

I am not promising anyone anything, however; as I said earlier...I'd encourage all of you to meet with your physician and ask him to treat you with a round of antibiotics as listed above. What have you got to lose?


On a closing note, if you do NOT have LPR as described above, this post will NOT help you. Rather I recommend visiting Erik's site where he gives great advice and knowledge (FREE) for helping those with traditional Acid reflux. You can find his site here: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CB0QFjAA&url=http%3A%2F%2Fwww.natural-reflux-cure.com%2Flaryngopharyngeal-reflux.html&ei=7m2oU-KCCcqlyATl14DoAw&usg=AFQjCNHxkEY3LClFXd-g_4ZGNqE-fsQ1Xw


I'm looking forward to hearing back from many of you and sharing my continued observations, experiences and findings.


All the best,


Bill from Minnesota, USA


To God be the glory through his Son Jesus Christ.

Again, I'm not a doctor, so please consult a licensed physician to help treat your illness.

Replying to Pink --

Hey Pink - I'm not sure what my specific numbers where...but I was within the normal ranges all 5 tests. Do you have LPR? What are your symptoms? Have you tried antibiotics?

Yes, surveys would be very helpful. The one I'd like to currently see data on is the number of people with LPR (not traditional acid reflux) who benefit from antibiotics.

Best regards,
Bill (Minnesota, USA)

Hello Louis - A couple of things come to mind:

- I'm not a doctor and the below is my opinion only. Consult with a licensed physician for your illness.

- When SIBO is treated with antibiotics, and followed up by prokinetics (Erythromycin) at low doses...this is the most effective treatment for eradication of SIBO, however; it comes back within 2-3 months following the last does of antibiotics...so then what? Yep, repeat the antibiotics again, and again, and again. As I mention below, for anyone with SIBO I would recommend Elaine Gotschall's book Breaking the Vicious Cycle. More on this below.

- thankfully they did not recommend Nissen fundoplication. For most people there is help outside of surgery.

- Traditional Acid Reflux (i.e. liquid reflux) can cause LPR. This type of reflux can often be cured with dietary changes. The changes appear/feel big to people when they first start, however; those that are sick after failing many times and feeling the consequences learn to stick with the program as they are hungry for good health. The changes soon become a way of life and the reflux goes away. This type of reflux can best be treated by following the advice of ERIC. Yep, Eric. His story is compelling and his information is free. You can read all about him and his dietary thoughts on reflux here: http://www.natural-reflux-cure.com/laryngopharyngeal-reflux.html

- LPR does NOT affect the esophagus. It does not produce positive ambulatory 24 hour dual channel ph/impedance tests. PPI's do not help the symptoms of LPR. It's important to have enough tests, to try a few things, to observe closely so you can know for sure, what TYPE of reflux affecting your throat (traditional liquid or gaseous LPR).

- I cannot/do not want to continue doing antibiotics. At some point they will not work and I'll be in a heap of trouble. I also do NOT want to continue to do them because they can injure the intestines (this is conjecture) through manipulating the bacteria in the GI tract.

- My plan is to follow the advice of Elaine Gottschall in her book Breaking the Vicious Cycle. Elaine became of molecular biologist (studied in Canada) and studied for 12 years. The book is based on Science. It is different than Norm Robilliard's book and all other diets. Not drastically, but different enough. I would highly recommend you read her book, it's short and to the point. This is the best advice I could give anyone with true LPR.

Best regards,

Bill (Minnesota, USA)

Thank you puzzik79. I agree that one should be cautious in using antibiotics...in any scenario. Do you have LPR as defined above in my original post?

Regards,

Bill (Minnesota, USA)

Bill, I can't thank you enough for this great information, truly!!! I do have LPR and was also diagnosed with achalasia. I have always wondered about gas, the part it plays in my body and on LPR. I think you and your wife are very bright to have put this together. I do know that at a couple of different times in my early stages I had bacterial overgrowth, not h.pylori, something else..all of what you say makes a great deal of sense to me! I think there is something to it. As far as food, food HAS to be a factor in healing LPR, there is no way around it. I've been vegan for 35 years so I was accustomed to trying different things and replacing meat and dairy with healthier foods, like almond milk which btw, almonds are alkaline so they help. I am seeing Dr. Jonathan Aviv and highly recommend his book entitled "Killing Me Softly from Inside" which addresses throatburn (LPR). He has a protocol that I think you will find helpful, a 2 phase protocol and it is spelled out very clearly in his book so that every lay person can read it. During the healing phase you don't eat any foods with a PH under 5, and during the sustainable phase, no foods with PH under 4, I have found this very helpful and I was doing great until this past weekend when I lifted something very heavy and my symptoms are horrible from it. My throat burned visciously for 2 days straight and the only reason it isn't burning visciously today is because I've been drinking 100% aloe vera juice, distilled, no citric acid added, it helps heal I believe. Has anyone else had burning for 2-3 days straight?

That's AWFUL Bill, my heart goes out to you!! Please do try the aloe for healing, I'm not positive that it will help everyone but might be worth a try. Just make sure the aloe you get is 100% with no added acid of any kind. I do not quite understand how you are describing LPR. I have not had PH testing done, but I eat no foods lower than a 4.75 PH, that much I know for sure. My UES does not work right and sometimes acid sits on top of the vocal cords, at one point I had a partially paralyzed vocal cord, but it healed. Does that sound the kind of LPR you are describing? I get upper left chest pain and have had that for YEARS with no other symptoms, and only the last 4 years have I had swallowing difficulty. 3 manometries showed achalasia, altho the first two said "unspecific achalasia" whereas the last one looked more like true achalasia. Also, this is kind of embarrassing, but it may apply to this situation, my lower bottom sphyncter muscle, the one for bowel movements does not work right either, I go for pelvic therapy, so none of my sphyncter muscles work right. I have burping, sometimes a feeling of needing to burp and cannot, I have bloated stomach that has gone down some and lost 20 lbs since I've been eating more alkaline foods. Although I've been vegan for 35 years, I was not a healthy vegan initially, I was hooked on pepsi and chips for YEARS, and I blame my current situation on the pepsi and chips. I don't know how to describe further for you. Could you explain the two different kinds of LPR, so that I can understand what you mean? Thank you...

I once took myself off of aciphex and I got worse, then he put me on aciphex twice a day and it got better, now I take aciphex in morning and zantac at night. My gut feeling is that neither are doing a whole lot, but what do I know. One other symptom I have is occasional stabbing on right side, my therapist said she thinks it is my intestines, and my GI said he does not think the stabbing is from any one organ.  So there is most likely some intestinal issue and I do take probiotics.  The area where diaphragm is hurts if I press it or strain myself in some way. Re: Gaviscon, it only helps me for about a half hour, after that it might even make the burning worse, not sure.  Eating protein first thing in morning helps, without too much water, aloe helps and ginger helps.  Nothing much else helps, and nothing is helping permanently right now as far as burning goes.

Post Edited (SusieDawn) : 7/10/2014 1:30:16 PM (GMT-6)

Hi Bill,

Thank you for the prompt reply!  I thought you were trying to say there were two diff. types of LPR.  There has never been any doubt in my mind that I have LPR, I have throatburn, have had in the past vocal cord damage.  I saw my Dr. last night and got some excellent news, the swelling on larynx has gone down, I saw it myself on computer, looks much better, and the Dr thinks the burn/pain is probably nerve pain, and I trust him implicitly.  I've had lots of doctors in the past that I would not put that much faith in, but I do trust Dr. Aviv.  If you are in NYC you might want to pay him a visit, he is definitely helping me!  If you aren't in NYC please do purchase his book, I think that you will since you are the type who takes charge of their own health and does research.  Bill, I want to suggest something to you.  Have you ever seen a neurologist?  If you have and they did not help, my suggestion is to see an autonomic nerve specialist.  It wouldn't hurt, if they find nothing, you can at least rule that out.  The vagus nerve and a whole slew of other nerves are wrapped around and right beside the esophagus.  And my Dr told me that nerve damage was responsible for my partial paralysis of vocal cord. Prior to finding this doctor a cranial sacral expert told me the vagus nerve was behind my problems somehow but she didn't know exactly how, turns out she was not wrong. As far as PPI's go, I think in my case they do help, because of the time I went off of them and got worse, but I can't be sure of that, anyway I am lucky that I have a Dr who wants to get me off of them, but it has to be done carefully. I think there are probably one million reasons why people get acid reflux, whether it is heartburn or throatburn, hernias definitely play a big part, but in some people the nerves play a part, its so very very complex I think. Thank you for caring! I hope you find a solution for your horrible pain, I KNOW what that pain is like, it feels like acid is eating away at us, even tho that may not be exactly what is happening..I hope you have a very bright and healthy future ahead, take very good care!

Post Edited (SusieDawn) : 7/11/2014 8:00:29 AM (GMT-6)

Hi Bill
I am hoping that you are still posting to this forum. Your post is by far the best I have ever read on LPR after 1000s of hours of looking on internet. I have officially been diagnosed with LPR and my symptoms mirror of all yours, apart from the fact that I have severe breathing difficulties since having LPR. I am going for a SIBO test, and have confidence that your theory on anti bitoics temporarily reduce the symptoms. I am interested to know if your journey to end your LPR has been successful. After following the diets and life style changes, are you "cured" from your LPR. Thank you for posting this wonderful information and to your wife for her valued involvement in your recovery. Kind Regards.