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Fatigue & sinusitis

Discussion in 'Immunological' started by Sasha, Nov 16, 2012.

  1. Sasha

    Sasha Fine, thank you

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    The thing I'm using is a nasal rinse rather than a spray. I use the Neilmed bottle that you shove up one nostril and the water goes up into the sinus cavity and comes out the other nostril (lovely! party trick!) so presumably gives it a pretty good clean.
  2. Sasha

    Sasha Fine, thank you

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    That seems to be the experience of people on this thread so far - that treating the sinusitis doesn't help with the ME.
  3. MNC

    MNC Senior Member

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    Have you just seen a GP for that? Not even an ENT specialist?

    I have seen no less that 10 ENTs plus no less than 10 maxillary surgeons plus neurologists plus internists, dentists...

    And guess what. Each of them said something different. Many theories, mostly absurd. They only agreed on one thing: that I didn't have any infection in the area, which was WRONG. A dental or jawbone infection such as the one I had may cause sinus pain like that or even worse than that.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    has anyone had sinus surgery that has fixed this problem??

    I was in contact with someone who had ongoing fatigue issues etc and sinusitis was diagnosed from ct scan etc and after surgery her cfs was gone, so cfs was a misdiagnosis when she had sinusitis. It would be nice to just have sinusitis.
    MNC likes this.
  5. MNC

    MNC Senior Member

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    Dr.Teitelbaum mentions chronic sinusitis as one of the first CFS misdiagnosis, but at the same time most ME people who get rid of the sinusitis or the sinus pain don't improve from the rest of symptoms much.

    You surely know that the Mayo Clinic said some years ago that chronic sinusitis was always fungal. An immune reaction causing chronic inflammation, not a fungal infection as such. Dr.Shoemaker (the mold-biotoxins theory of ME) goes in that same line. The German doctor from Mayo Clinic who did this research and publication has been working extensively these past 10 years in finding a cure with not too big success. They were trying to patent a nasal spray of amphoterycine-B (antifungal), but apparently, for what I have read, their success is not too good so far.
    Little Bluestem and camas like this.
  6. Sasha

    Sasha Fine, thank you

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    Just a GP. It hadn't occurred to me to ask for a referral since our conversation seemed such a dead end, although if the Flixonase hadn't worked after a long trial I suppose we'd have been having another conversation.

    I'm sorry you've had such a bad experience, even having seen so many specialists. You're right - being a patient means being at the mercy of people who can get it wrong, a lot.
    MNC likes this.
  7. Sasha

    Sasha Fine, thank you

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    I'm adding four drops of grapefruit seed extract to my daily nasal rinse because it's supposed to help with sinusitis because of its anti-fungal properties.
    Little Bluestem likes this.
  8. MNC

    MNC Senior Member

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    Sasha, from speaking with other british ME people I have learnt that your country is terrible concerning the doctors and services of the Social Security, that you are denied by them the most basic things trying to save money. So, I'm not surprised. Here I have never had any problem in that regard. Of course people in Spain complain too but at least my experience has always been good and have got anything I have needed, fast and top technology for free. Come to Spain for a while, many people from other countries do to get good medical treatments for free.
  9. MNC

    MNC Senior Member

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    I tried grapefruit seed drops and a million or billion other remedies, as the pain is constant and unbearable.

    Unfortunately nothing has ever helped. I hope you have better luck.
  10. Sasha

    Sasha Fine, thank you

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    Hi MNC - I don't think my GP is denying me a scan as a cost-cutting measure but because he believes I don't have any sign of infection and so a scan isn't indicated. When he's got good evidence to do something for me, he does it. I went to him with another condition a couple of weeks ago and was given immediate blood tests, an ultrasound scan, I'll be getting another test next week and I've already been offered drug treatment. So it depends on what the condition is and whether, as a patient, you're presenting symptoms that indicate a particular line of action.
  11. Sasha

    Sasha Fine, thank you

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    I'm sorry this hasn't worked for you. The pain is really horrible when it's happening.
  12. MNC

    MNC Senior Member

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    Oh, I see. You are lucky if you have a GP you trust then. I have seen them all being wrong so many times that I don't trust anyone.
    nanonug and Sasha like this.
  13. nanonug

    nanonug Senior Member

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    Sterile inflammation due to mast cell activation is a possible explanation, I would guess.
  14. MNC

    MNC Senior Member

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    Nanoung, despite I will keep trying with Mastocytosis, as I told you, I spoke on the phone with Dr.Escribano from Spain, one of the world's leading doctors in Mastocytosis who runs one of the best Mastocytosis Units in the world near Madrid. He told me that my symptoms could be Mastocytosis but I had to go there. Since I can't go anywhere outside the city and an affordable taxi distance I sent all my tests and medical reports to them. The doctor who reviewed them said that 100% sure that I don't have it. I spoke with her on the phone and insisted if they could be wrong and if they could at least test me for tryptase, which she refused but offered to speak with my Internist and suggest her to prescribe me oral chromoglicate, but I didn't do it.

    Still, last week I got a prescription for a tryptase test from another Internist and I will do it sooner or later. I am not in a hurry and I am currently recovering from the extraction of my teeth with much pain in the sinuses area, but I will do it just in case.

    Next week I also have an appointment with the neurolohist who suggested me I could have Mastocytosis in the first place. I had read about it extensively in the past and it was one of the diseases I had considered, but he made me go deeper. I will discuss with him these news on Ketiotifen and so on.

    I am also a member of the Mastocytosis Canada forum and read there from time to time. Also in the Dysautonomia forums where some people reported improvement in POTS and Dysautonomia by treating Mastocytosis.

    Last week I started to take a pill of 10 mg of loratadine every day, which didn't help, but after 3 days I stopped because I had my dental extractions and didn't want to mix too many medications, as I had to take antibiotics (doxycyline), antiinflammatories and pain killers, but I will try again with loratadine.

    So, as you can see, I am interested in Mastocytosis and working on it, despite having being told by that very expert from the Mastocytosis Unit that I don't have it.

    This is Dr.Escribano's Unit. The Institute for the Study of Mastocytosis, near Madrid. http://mastocitosis.org/ If you want to contact him, I'm sure he will talk to you on the phone to answer any doubts, He was very kind to me.
  15. MNC

    MNC Senior Member

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    By the way, I remember you told me that there is one very specific test for Mastocytosis that is not Tryptase but something else.

    Since I'll meet this neurologist next week to discuss Masto, could you please remind me that test to ask him to prescribe it to me, please?
  16. nanonug

    nanonug Senior Member

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    Mastocytosis is rare, but according to Dr. Lawrence B. Afrin, Mast Cell Activation Syndrome (MCAS) is common. In the case of mastocytosis, there is aberrant proliferation of mast cells (that is, too many mast cells are being produced). However, in the case of MCAS, there is aberrant activation of mast cells (that is, mast cells are being activated for unknown reasons.)

    Elevated tryptase is a marker of either mastocytosis or MCAS. A normal tryptase level makes mastocytosis unlikely (but not impossible). In the case of MCAS, however, tryptase is typically normal. For this reason, other tests are necessary.

    The three "basic" mast cell disorder tests are: serum tryptase, 24-hour urinary N-methylhistamine and 24-hour urinary Prostaglandin D2.

    Dr. Lawrence B. Afrin has a document specifically for physicians entitled "MCAS Primer for Physicians". You may want to take this to your doctor. There is also another document with tons of useful information entitled "Systemic Mast Cell Disease: An Update".

    The bottom line is: starting with just a serum tryptase test is not bad. However, it might not be enough to fully detect mast cell activation disorders.
    MNC likes this.
  17. MNC

    MNC Senior Member

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    Thanks Nanoung, excellent. Since this doctor is the one who suggested Masto to me and dedicates me a long time everytime I see him (the only one I've seen who does that, listening, interest, thinking and time to a patient), I will take the opportunity to ask him for the 3 tests and will show him the document.

    Thanks so much.
  18. Hip

    Hip Senior Member

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    Hi MNC

    This large infection found above your upper teeth:

    Sometimes chronic focal infections in the jaw bone can be the actual cause of ME/CFS symptoms, and when the infections are fully removed, all ME/CFS symptoms disappear.

    Here is some info on focal infections in the jaw bone (osteomyelitis and osteonecrosis):

    There is a member of this Phoenix Rising forum, Ian, who knows a lot about jaw bone infections.

    Some links to Ian's posts:
    My recovery from CFS due to osteonecrosis in my jaw -- Healing and recovery from Chronic Fatigue Syndrome, ME (myalgic encephalitis), Osteonecrosis
    My recovery story | Phoenix Rising ME / CFS Forums
    I think i put the puzzle together | Phoenix Rising ME / CFS Forums
    MNC likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Another member of these forums who goes by the name of Ian had what it sounds like you have.. with infection going into his bone which had been eatten away. He's now recovered from his CFS after having this treated properly, it turned out that this issue was causing all his health issue. I strongly suggest to read his posts on this and the treatment he had and which you probably too need. You may not have CFS but rather this.
    MNC likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    Newcastle University (Australia) CFS research in the late 1990s found that many cases of chronic sinus infection in us are actually being caused by Staphylococci in the nose. Thou 25% of normal people also get Staph in the nose, it was fund thou that we tended to have the kinds which produce toxins (this can cause also IBS and CFS symptoms). A couple of others CFS specialists in Australia also studied this..

    Due to that I had nasal swabs done and yes a lab did find a had Staphylococci in my nose. I never thou got another nasal swab for more advanced testing to find out if it was an actual toxin producing kind or not (due to cost, Staph varieties not covered by medicare test only the basic nasal swab test was covered). So then just had tests done to find out what antibiotic to treat it with.. the one I had was immune to two thirds of the antibiotics it was tested with. I also took with olive leaf extract when I took an antibotic it didnt have resistance too, as doctor had told me it can still be hard to kill.. I only occassionally get sinus like symptoms nowdays... Ive no idea if I got the staph back or not (but a test at a later date a year or so later showed i was stil clear of it in my nose).

    I dont feel enough energy to go looking for the actual study link but there is something on "toxin producing strains" of staph causing sinus issues in ME/CFS at http://home.vicnet.net.au/~mecfs/general/whiting.html
    Sasha and heapsreal like this.

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