Silent Acid Reflux was cause of my chronic fatigue

Discussion in 'Fibromyalgia Main Forum' started by afisher39, Nov 30, 2005.

  1. afisher39

    afisher39 New Member

    I was sick for 7 years and was finally diagnosed correctly 3 months ago with silent acid reflux. It's silent because you don't get heartburn. My symptoms were a chronic sore throat, low grade fever, unrelenting fatigue,pain in upper teeth, headache, and post nasal drip and tons of mucous production (your throats natural reaction to the acid that is pouring into it). The acid also came into my mouth and caused a thick white coating to form on my tongue (also a protective mechanism against the acid). This condition is much worse than heartburn because the acid goes all the way up your throat into your mouth.

    The worst part of all was that it caused sinus infections.

    I went to 10 specialists and spent tens of thousands of dollars before getting this diagnosis. It was missed by several chronic fatigue specialists. A top rated ENT (ear, nose and throat doctor) put a lighted scope through my nose and down my throat to make the diagnosis. He called it cobble-stoning, the appearance of the throat tissue after it is exposed to acid.

    I am writing because I believe that this is much more common than most doctors believe and it's possible that some of you may have this. If you suspect it, you might try a 10 day dose of prilosec (acid pump inhibitor---OTC). As long as you don't have a sinus infection, you will feel better within 24 hours if you suffer from this condition.

  2. dreamharp

    dreamharp New Member

    Yes, I have heard that reflux disease can cause sinus disease. Which is Gerd. I have had postnasal drip
    for 19 years so I will check this out. There are a few ENTs
    that are catching on to this. Doctors need to start think-
    ing outside the box. I am gonna run right out and try prilo-
    sec for 10 days. In fact, After Thanksgiving dinner,
    (fatty meal) I woke up the next morning with severe throat

    afisher39, I can't thank you enough for bringing this
    subject up. So many people suffer with sinus disease.
    I am happy your condition is resolved!


    <br>[<i>This Message was Edited on 11/30/2005</i>]
    <br>[<i>This Message was Edited on 11/30/2005</i>]
  3. jane32

    jane32 New Member

    One of my drs. months ago told me everything was due to acid reflux. I thought he was crazy but I went to two gastro drs. and they told me it may contribute to it but it is not the cause of everything. I had my second endoscopy done and they did see some damage. I take Nexium but never saw a difference in my fevers or anything. I also tried other drugs so for me I know I have bad case of acid reflux (GERD) plus CFS.
  4. earn

    earn New Member

    Thanks to you,afisher, and all the rest. We need all the information we can get about this, as the doctors seem to have a hard time with a correct diagnosis.

    I literally thought I was going to die before I finally got mine under control.I had all the tests and scopes that they give. My ENT seemed to know more about it than the gastro dr, who never mentioned sinus prob,and he almost caused my pain dr to stop giving me pain meds--saying that could cause it.

    The same gastro dr did surgery on a friend of mine-placing something simular to a "rubber band" around her esophagus to stop the flow of acid. Now she will no longer be able to "vomit"--which he did not inform her of this until after the surgery. (scary).

    She had developed ulcers on her vocal chords--never had heart burn--.

    Please keep us posted of any changes, and things that may help. I take Prilosec morn and night--and Gaviscon is the best lig that I find. Placing blocks under the head of bed helps the acid not to be able to flow up at night.. I was choking and could not swallow lig or solids for a long time. Thanks again--Laverne
  5. afisher39

    afisher39 New Member

    Since you have signs of acid reflux, is it possible your fevers are due to a low grade sinus infection? That was actually the cause of my fever (the acid reflux caused the sinus infection), but it went undectected on my CT scan until it got so bad that 3 years later it finally showed up. At that point I was put on a Medrol Pack (10 days of prednisone) plus an antibiotic (Levoquin). This was back in August and was the first time in 7 years I felt myself again.

    One thing I learned from this experience is never to give up. There is a reason you are feeling badly. Go to the best doctors you can--that made a huge difference in my case. If a doctor isn't helping you, go elsewhere. I know how hard it is be persistent when you feel awful. But do perservere. Hang in there. Amy
  6. jane32

    jane32 New Member

    I have had acid reflux for years and I am only 27. I sleep with my whole bed elevated too and try to watch my diet. I have had CT scans too. No I don't have any nasal problems excpet for once or twice a year and then I may get a sinus infection if I let a cold go too far. I have seen tons of drs. (22)until I finally got diagnosed with CFS and I am starting to feel better. I started the FFC protocal and they are treating my yeast and EBV along with some hormonal things. I still watch my acid b/c I think it contributes to the problem. I have that white coating on my tongue too but even when I had bad acid problems years ago I never had the white coating. Instead I got it the day I came down with CFS and it never went away. I think it is from my candidias. I am starting that protocal in another month so we will see if it changes:)Oh and my fevers aren't constant they are recurrent. Every month I basically get a mini flu for 10 days.
    <br>[<i>This Message was Edited on 11/30/2005</i>]
  7. SherylD

    SherylD Guest

    I don't know that I have the exact same problem but now that I am reading this I might.

    I have been having problems with my stomach forever. But when I was pg with my daughter 6 years ago I always felt like I was going to throw up. I thought it was just cuz I was pg.

    Well 6 years later I still feel like I am going to throw up all the time. It is bad when I get really tired. Then my throat hurts and I just feel really sick. I have never felt like I have heartburn though.

    I have been on nexium for about 3 month.. don't really feel any different. Except I don't have all the bloating. Now though I have pain in my stomach too. Then I was put on prevacid? I think that is what it is. I still have no change.

    I just had a uti and a sinus infection was on leviquin.. Nasty stuff! That just killed my stomach.

    I wake up in the night a feel like I am so close to throwing up. I hate it. I just feel awful all the time. I try to watch what I eat. But I don't think it matters what I eat.

    I am suppose to go to the gastro.. but I can't get in till Jan. I guess I will see what they have to say.

    I also have terrible dizziness and just like I am spinning with it all. Who knows..If anyone has any suggestions for me when I do get into the gastro let me know.

    <br>[<i>This Message was Edited on 11/30/2005</i>]
  8. dreamharp

    dreamharp New Member

    Did you have a cough with your acid reflux?


  9. Pianowoman

    Pianowoman New Member

    I have a chronic cough which I have always thought may be caused by the reflux. Maybe I should start making more noise about this.
  10. dreamharp

    dreamharp New Member

    Bumping for more info..
  11. slowdreamer

    slowdreamer New Member

    Thanks so much for coming back to tell us.
  12. lease79

    lease79 New Member

    So glad to hear that you're better.
    I so wish that GERD had been 'the' answer for me, but I've been on treatment for the GERD for a long time now & it hasn't made a lot of difference to any of my other symptoms.
  13. afisher39

    afisher39 New Member

    Your symtoms sound so much like mine used to be, including the mini-flu 10 days every month. I'm glad to hear you're going on the candida program--that helped me a lot. Also, the Great Smokies stool test was instrumental in revealing a pathogenic bacteria that I had gotten from eating raw oysters. The nice thing about that test is that it can tell you the antibiotic that is most effective against the bacteria identified.

    Clearing infection is key to gettting well. Dr. Teitlebaum, who I saw for a year, liked to use the acronym SHIN which stands for sleep, hormones, infection, and nutrition as the four major components for recovering from CFS.

    May I add that going on a gluten-free diet also elimintated autonomic nervous system dysfunction (dizziness on bending over, palpitations.) If I were do it over again, however, I would have gotten the celiac panel first (a simple blood test) because once you're off gluten, the test isn't accurate.

    Re: acid relux, I've learned that reflux is as bad during the day as at night, but if it is silent, you're not aware of it so elevating bed can only work so much.

    I think it's really critical to make sure that the reflux is completely controlled with the right medication. I take Aciphix twice a day, which is more than most doctors recommmend, but is the only way I can control it until I get an endoscopy done and see if any abnormality can be corrected.

    Hang in there and continue unpeeling the onion one layer at a time. Best, Amy
  14. afisher39

    afisher39 New Member

    Sheryld, I haven't had the feeling of throwing up but I know other people who have had. I would encourage you to keep your appt. with Gastroenderologist. Too often primary care doctors don't properly treat these specialized problems.

    Dreamharp, Acid reflux didn't cause me to cough. I had a sore throat and was constantly having to clear my throat of mucous however, and become hooked on guifenesin for relief (it thins the mucous). I haven't had a cough with this, but looked it up on the website, and this is what they said:

    Q. Are sore throat and cough symptoms of reflux?
    A. They may be. Although other reflux symptoms are more common, unexplained persistent sore throat, hoarseness, and/or cough may be secondary symptoms of GERD.

    May I add one more little known fact: Peppermint is a major cause of acid reflux because it relaxes the lower esophogeal spincter. And I was drinking 8 cups of peppermint tea a day because I thought it was good for digestion!

  15. Sandyz

    Sandyz New Member

    That`s very similiar with what happened to me before I found out a had acid reflex. I had sore throats and sinus infections all the time. I also had bad chest pains from it. The doctor said it was really affecting my whole respitory system even my broncial tubes. I guess it can set off asthma too.

  16. dreamharp

    dreamharp New Member

    How did you clear your acid reflux?

    Thanks you.


    LISALOO New Member

    About 7 years ago my allergist thought my problems were from acid reflux, put me on prilosec. Didn't seem to make a difference with my sinuses. But the last 3 months I've been horrible, had some daytime acid reflux, not much. I've been on three antibiotics, and it's just made me worse, so maybe I'll try again.
  18. jane32

    jane32 New Member

    You are the first person that I have talked to that had the same 10 day or so cycle. I can't stand it and it took a good 6 months before I realized that it was a cycle and then it takes like two weeks to recover. Right before I get sick I feel awesome. What do you think was causing your fevers or flu like state? How long did it last? One woman told me she only had fevers for a year and then they began to subside. Supposedly, the EBV is causing it.

    As for the acid reflux---I had and endocsopy done 7 yrs. ago -took prevcid for awhile then graduated college stopped drinking and eating bad. Two years ago I started Nexium due to this pain underneath my breastbone. I just seemed to burp a lot and don’t really feel good until I do-so gross. Anyways, when I saw the infectious disease dr. and he told me he thought is was acid I was like you are kidding. We increased my Nexium and I found I was burping more. I don't know if it breaks things up or what. Anyway, when I went back to him and I was getting better he reffered me to a dr. that knew something about CFS. I also saw two Gastros that didn't feel that was the main cause. I had another Endoscopy done-no sedation (very proud of myself!)and they did a biopsy on a raw area. It turned out to be okay but know I just take Nexium one a day. I guess I didn't feel it was making a difference but I definitely have the silent form b/c I don’t' always feel it. Oh last year when I first got sick my ENT dr. also did that nose -throat procedure and saw little bumps. That wasn't too fun either.

    Anyway, you began to take prilosec and then you just got better with in 10 days. And no you take Aciphex? No other symptoms? Were you still having the fevers and such? were you able to work?

    What did you do for the Candida diet? I am a sugar addict therefore I am not looking forward to starting it. I also did a stool test but no parasites just Candida.

    I love Dr. Teitlebaum's book and vitamin drink. I meet someone else that went to him and felt that he really helped. Did he help you? What did he say about the recurrent flu-like symptoms?

    Sorry for all of the questions but I just need to acquire as much knowledge as I can. I want to get better soon:)

    If you want you can e-mail at if that is easier. I would apprecaite any advice on the diets. WHat is a gluten free diet? Similiar to candidias?
    My only symptoms are low grade fevers and chills, moderate fatigue and sleep disturbances now.
  19. shep

    shep New Member

    I am so glad you made this post. I too have had GERD for several years, always taking Tums or Rolaids.
    I finally gave in and went to the doctor. The doctor put me on medications and they helped me a lot, but still have some problems. Probably because I eat things I know I should eliminate.
    The doctor also told me acid reflux untreated over a long period of time can cause cancer of the ecpohogas.
  20. afisher39

    afisher39 New Member

    lisaloo: I didn't get well until I got the right antibiotic. Unfortunately, there are so many resistent strains of bacteria out now that it can take many tries before finding the right one. My allergist believes in the quinolone family--biaxin, cipro, and levaquin are three that I tried, but only levaquin cured my sinus infection (along with prednisone). Everyone is different.