Fatigue & sinusitis

[Sasha]

Sasha i do use the saline sprays and it does help some but doxycycline is the thing thatreally helps me and it works well but it would be good to not have to rely on antibiotics.

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.

 

[Sasha]

i think sinusitis for us is just one of these things thats going to hang around until there is a treatment for ME/cfs and i believe its justa co-infection just like other infections can be??

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

 

[MNC]

Hi MNC - I'm not sure how a scan would help. If my GP doesn't think that one is indicated then I won't be able to get one unless I can come up with a good argument, based on evidence, as to why I should have one. If a scan showed my sinuses had got nibbled, would I be treated with antibiotics? I'm not sure I'd want that. I'm on MAF 878 and am hoping that that will maybe tackle the problem.

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.

 

[heapsreal]

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]

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.

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.

 

[Sasha]

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.

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.

 

[Sasha]

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.

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.

 

[MNC]

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.

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.

 

[MNC]

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.

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.

 

[Sasha]

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.

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.

 

[Sasha]

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.

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

 

[MNC]

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.

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]

I have amazing sinusitis symptoms for 15+ years, one by one as described in sinusitis, but after lots of scans, MRIs or x-rays no infection has ever been found.

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

 

[MNC]

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

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.

 

[MNC]

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

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?

 

[nanonug]

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?

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]

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.

 

[Hip]

Last tuesday I learnt the lesson again about doctors mistakes and scans and x-rays mistakes. For over 20 years I was complaining of pain in my upper teeth, terrible pain which they said was nervous, just as the not-sinusitis. Well... after that 20+ years battle finally last tuesday I pulled those teeth off and guess what came out... a huge infection about 1 inch size which was up there next to my sinuses in my canine. I hoped it would resolve the sinusitis-like thing, but it has got even worse now. It's a bit early as only 3 days have passed but I feel it's not going to get better in the sinuses, so I'll keep fighting the real enemies, the doctors, until I find the infections I have in that sinuses-teeth-maxillary area.

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):

Focal infections can be very hard to detect if they are hidden inside bones, such as the jaw bone. Hidden jaw bone infections can arise from poor quality dental work. Such infections can develop from jaw bone cavitations — the hollow pockets in the jaw bone left after tooth extraction — which occasionally become infected. Bone infections tend to involve osteomyelitis (infection of the bone marrow with anaerobic bacteria) and osteonecrosis (tissue death from reduced blood supply). Such bone infections will usually not show up on X-rays. However an MRI is sensitive to osteonecrosis, and can detect osteomyelitis as well. Ultrasound and thermal imaging cameras can also be used to help detect a jaw bone infection. A handheld device called the Cavitat scanner can detect focal infections hidden within the jaw bone. A simple test for jaw bone infection is applying pressure to jaw bone with a finger; if any area feels painful, this indicates a possible bone infection.

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

 

[taniaaust1]

.

Last tuesday I learnt the lesson again about doctors mistakes and scans and x-rays mistakes. For over 20 years I was complaining of pain in my upper teeth, terrible pain which they said was nervous, just as the not-sinusitis. Well... after that 20+ years battle finally last tuesday I pulled those teeth off and guess what came out... a huge infection about 1 inch size which was up there next to my sinuses in my canine. I hoped it would resolve the sinusitis-like thing, but it has got even worse now. It's a bit early as only 3 days have passed but I feel it's not going to get better in the sinuses, so I'll keep fighting the real enemies, the doctors, until I find the infections I have in that sinuses-teeth-maxillary area.

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.

 

[taniaaust1]

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