A sinus discovery

Discussion in 'Fibromyalgia Main Forum' started by Information, Dec 17, 2002.

  1. Information

    Information New Member

    I have found something that seems to work for me and want to pass it along. Some background: I have recently found out that the mouth germs responsible for tooth decay are strep (who knew?) and that work is being done to develop a product people can swish around in their mouths as a decay preventative. I also know that folks with fibromyalgia tend to have lots of post nasal drip -- for years I thought it was just me, since this is not the sort of thing that comes up in normal conversation. My mouth felt significantly cleaner after swishing primadophilus around for a couple of minutes and I decided -- what the heck -- I would see what the stuff could do for my poor sinuses. So I made a very mild solution with the stuff and irrigated my sinuses, which were very irritated at the time so it wasn't exactly the most pleasant experience. Now, I have had such bad fibro in my right arm that it has resulted in a "frozen" shoulder. This has been going on for months. Within a couple of hours of my "nose job," I noticed while doing my range of motion exercises that I suddenly had TWICE the range I'd had just hours before. Just wanted to pass this along. I feel like the person I was so many years ago before all this started happening. I will let you know what, if anything, else has happened in a couple of weeks. STAY TUNED! (And never stop trying!) --Jo
  2. lucky

    lucky New Member

    If you go on www.beatcfsandfms website, you'll most likely find out the most valuable articles on why we have sinus problems with CFS/FMS. You'll be very surprised what you read and it might help you to understand more about this problem so many of us share. Lucky
  3. 1Writer

    1Writer New Member

    Tried to find it and can't...is it .com, .net, .org, or what? And as to the sinus problems, I have CFS and terrible allergies and they seem to go together according to everyone around here....Let us know it that stuff you are using continues to help you...could be a God send!
    1Writer
  4. rlh1961

    rlh1961 New Member

    When I was first diagnosed with FM almost a year ago I began to research and read as much as I could. I remember reading that most people who have FM/CFS have a history of sinus/allergy problems and lots of upper respiratory infections. I also have strep throat at least once a year and have since childhood. So, the info I read described me to a "T". I still suffer with it tremendously. I've been seeing an ear/eye/nose/throat doc for 3-4 months due to a severe sinus infection that wouldn't go away. Now my nose is the problem. It is always stopped up, and hurts badly. I have migraines resulting from the pain. That pain goes down my neck and into my shoulder blades. It's like the dominoe effect.........I'm sure you all know. Anyway, I've been using a solution to clean my nasal passageways, a spray, and a euchalyptis nose drop in hopes of clearing this up. None of it helps. I'm very interested in what you're doing, and look forward to hearing its progress. Good Luck!
  5. TaniaF

    TaniaF Member

    I have been going crazy with my sinus and nose this past month. I've tried a lot of natural remedies but no help. I can always tell when the facial pain ends up infection wise, because a round of Ceclor (antibiotic) clears up the pain and thick secretions. I hate this route, but it's miserable to lie down to sleep and feel this pressure and pain.

    Just curious, how many of you with sinus problems end up with antibiotics???
    Tania
  6. lucky

    lucky New Member

    The reason why most CFS/FMS people suffer from sinus infections can be read on:
    www.beatcfsandfms.org/html/FungiStrategy.html
    The articles on this site, especially the explanation by Dr. Elmer M. Cranston is priceless and makes sense. This site I discovered on this board plus had great input by a member in regards to the fungi theory and the treatments. This is why I love this board.
    Since I had a doctor's appointment for another sinus infection, it surprised me that my doctor was suggesting a new approach treating these constant infections and instead of antibiotics I was on Nizoral for 3 weeks up to today. The result was absolulely amazing, and after taken the meds for 3 weeks, I had a little more energy and was able to prepare more for the holidays than I usually am able to.
    I was just posting to find out more from members, if they have been on the same medication for the same problem and for how long it was prescribed for them.
    Hope, you will find the relief I have found and wish you all the best. Lucky
    [This Message was Edited on 12/18/2002]
  7. Information

    Information New Member

    I appreciate what you are saying. But post nasal drip (and lots of it!)is a well-known symptom of fibro. Now, I know that both fibro and autism share a number of symptoms, and there is certainly a relationship from that point of view. I am sorry if I seemed not to take this seriously -- the symptoms are very serious indeed. My point in offering the sinus "discovery", however, was merely an attempt to share what I have found to be an effective way of dealing with a very unpleasant symptom. Actually, I think the sinus problems may play a huge rule in fibro since you have lots of bactera (strep and fungus among them!) infecting a space that is right in your brain and separated only by a semi-permeable mucosal membrane. The more diseased and damaged this membrane is, the more permeable it becomes. --Jo
  8. Information

    Information New Member

    Thanks for the great tip. It will be my next "stop" in today's internet cruise. --Jo
  9. Information

    Information New Member

    I hear what you are saying about antibiotics. I have crtainly had to take them in the past and they always leave me with a bad fungus infection and a rebound effect. They do nothing to solve the problem of my system not being able to fight off a sinus infection and probably do more harm than good by killing off the good bacteria -- which you need in all your mucosal membrane -- that keeps the bad guys under control. But here's the beauty of using acidophilus or primadophilus -- it works in your mouth and sinuses the same way it works in your gut, promoting the "good" bacteria and killing the bad bugs (strep and fungus). This is why it has been found to work in controlling tooth decay -- my theory just takes it to a different location to see if it will also control sinus strep and fungus. From my recent "snort" of primadophilus, I believe it does. -- Jo
  10. TaniaF

    TaniaF Member

    I take primidolphilis (sp) in capsule form daily. What form is yours that you use as a mouthwash? Is it liquid or powder that you mix with sterile water?
    Thanks,
    Tania
  11. Sandyz

    Sandyz New Member

    I think you could be right about the connection. What is
    primadophilus and where can you get it? My sinus and allergys have beee really bad for 3 years. My neck always gets so tight and my shoulders when the sinuses and acting up. I would like to try the primadophilus. The antibiotics
    sure don`t work.
    [This Message was Edited on 12/18/2002]
  12. kaymac

    kaymac New Member

    Hey all,

    Just wanted to join in on the sinus connection. I feel I am the Queen of sinus trouble. I have had horrible sinuses infections since a teen (now 38). I went thru 4 major sinus surgeries to no avail to help me. I stayed on antibiotics and steroids for years, to no avail. My ENT finally did some extensive lab work and research and turns out I have "allergic fungal sinusitus" or AFS. Hidious disease. It is like an auto immune illness of the sinuses and it casued by fungus. My enemys are aspergillus and culvalaria. So my body remains in an overactive state most of the time. Then with allergy injections and yet a 5th sugery to extensively clean out my sinuses and reconstruct, I have gone one year without a Major infection, only minor ones. I use daily irrigation with salt and soda, and a spray of saline and bactraban. They try to keep me off the steroids and antibiotics as much as they can, because antibiotics are systemic, they do not reach the goo in your sinuses that is blocked with polyps, more goo, or bad sinus structure! They are useless. There is no cure, only managment of allergies and keeping control of them.

    In saying all that, with my last major infection and surgery, my fibro reared it's ugly head to the point I thought I was dying and that is when I was diagnosed, even tho I had symptoms for years, but the worse flared in Dec last year and hasn't let up much at all. I do believe they are linked somehow. Why wouldn't they be? Allergies are auto immune disorders and affect the system as fibro does.

    I am looking forward to looking up that earlier mentioned site too. I would love to hear personally from someone with AFS too as well as fibro.

    kaymac
  13. Information

    Information New Member

    Thanks for your interest. The primadophilus I use ( I know this is the right spelling because i am reading it off the bottle) is REUTERI by Nature's Way. This is what I have found works for me, but there are other brands. I have been taking it for my gut for about six months and it helps a lot. When I read the story about using acidophilus to prevent tooth decay, I just broke open a capsule and swished it around my mouth. Nothing special. Then when I decided to try it on my sinuses, I broke open another capsule and put a VERY SMALL AMOUNT (maybe 10 percent) of it in the half cup of water my nose irrigator holds(I ordered this off Andrew Weill's excellent web site). You don't really need to actually irrigate with it -- the point is just to deliver a small amount to your sinuses so that your mucosal membrane will have the protective bacteria it needs to keep out the bad bugs (mainly strep and fungus). Now, my sinuses are very inflamed and it was not particualarly cofortable to do this -- if I hadn't noticed feeling very good in fairly short order, I wouldn't have done it again. But I want to add why I think this is important: Your sinuses are separated from your brain by a thin semi-permeable membrane. It's well known that mucosal membrane becomes more permeable when it is attacked by bacteria and fungus. How on earth can the waste products of these bugs not end up affecting one's brain function? Antibiotics are fine in a pinch but I suspect they cause the same problem in the mouth and sinuses as they cause in the gut: ALL bacteria is wiped out and having the good bugs gone simply opens the door for the bad ones. I will be very interested to hear what you make of this and caution you to go slow -- try it once, wait a week, and see how you are feeling. Incidentally, it is easy to reach me at zippychippy13@hotmail.com (I hope it is legal to give this out here) in the event that I don't look at the message board for a couple of days. --Jo
  14. Information

    Information New Member

    I was really feeling for you reading your message. There is a piece in today's New York Times -- it is available online at New York Times.com -- on the most recent thinking about sinus problems. You will likely find it interesting and helpful. It mentions Mayo clinic team using anti-fungal solutions directly on sinus mucosa and also the use of Xylitol (yes -- the sweetener) on sinus membrane to keep bacteria from adhering to it.
  15. karen2002

    karen2002 New Member

    It has been reported that acute sinus infections are usually bacterial in nature. On the other hand chronic infections which do not clear up with antibiotic therapy, and are of a duration of three weeks or more, are usually attributed to fungal infections of the sinuses. The overgrowth of fungi, cause an allergic reaction in the host, thus the typical sinus symptoms.

    Fungi, and bacteria are present throughout our bodies, normally. Some even assist in our bodily functions. It is when they proliferate past an acceptable level, that we have problems.
    Karen
  16. lucky

    lucky New Member

    After I read all your messages re sinus infections and what you have suffered, I certainly can relate to it because I was ill with infections every 2 to 3 months and on antibiotics and that for many many years.
    I have tried everything available without a prescription, but it just did not do the trick to kill the fungus.
    The connection of fungus or yeast overgrowth/sinus infections, etc. makes sense. And, as I mentioned, since I was on Nizoral, I felt so much better and did not have to take the antibiotics which threw me back weeks on end. I am by far not as fatigued, my nose is not plugged, etc. and the infection is gone.
    I have phoned my doctor today to see what the next step of this treatment for me will be.
    Kind regards, Lucky
  17. kaymac

    kaymac New Member

    Thanks (Jo) for the referral to the New York Times article. I hope I can still find it after leaving this site, since I am just now reading your message.

    kaymac
  18. lucky

    lucky New Member

    I finished my 3week Nizoral treatment for my latest sinus infection and it was a great success. Not only did my infection go away, but I also felt generally a lot better which shows that I probably not only have the infection in my sinuses but in other parts of the body as well. And according to suggestions in the articles I read, the treatments should last a lot longer.
    However, my doctor refusesd to give me another prescription although a liver test showed that it was not affected by the treatment.
    Since you seem to be familiar on this subject, I wondered if you have any suggestion.
    Thank you, Lucky