Fatigue & sinusitis

[heapsreal]

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

Tania i think from memory the toxins were from people swallowing the post nasal drip and cause gut infections, i think thats how it went but i could be wrong??

 

[alex3619]

I just tried an antihistamine nasal spray rather than tablets to test mast cell involvement. There was no response. I still think its either an infection or associated with infection such as abnormal immune response which permits infection. Bye, Alex

 

[MNC]

Hi MNC

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

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.

Thank you Hip and Tania, I have been speaking with Ian for the last year or so, since I was diagnosed with maxillary osteomyelitis by an advanced scan test called scintigraphy. I didn't mention it in this thread because it was a very long story, but Ian has been more than kind and helpful, he's been amazing helping me. I sent him this scintigraphy plus the many other tests I later took (MRI, HD CT scan, X-rays...) and he studied all of them image by image and even sent them to his dentist, Dr.Munro-Hall, and returned the images with marks and comments. Both Ian and Munro believe I have many osteonechrosis in the upper and lower jawbones. But I have to go step by step, so first I pulled these two teeth and I'll keep doing studies to see what happens.

The problem is that I had my two upper canines root canaled when I was 16. Now I am 47, and they have been hurting for the past 30 years. In the past 20 (yes, 20 years) I have been having terrible pain in the sinuses and upper teeth, with turbinates hypertrophy (nose absolutely swollen inside with no room for passing the air), plus deviated septum from a fight when I was 20 that left my nose a bit sunk in the left nostril, so doctors don't have a clue on what is causing so much pain, sinusitis symptoms and respiratory difficulties. I have really heard a hundred theories. Some ENTs suggested to operate and cut the turbinates and correct the deviated septum, but most of them say it is not justified. Another one said I have to do plastic surgery to change the shape of my nose which is the cause of the obstrution and inflammation and pain. And of course, others say it is anxiety related or CFS related or Chemical Sensitivity related. It isn't clear that the dental or maxillary infections are the cause of the nasal problems, that is what I was expecting to see after pulling these teeth and cleaning the huge infection, but after 4 days it doesn't improve.

And the even more confusing situation was that when that scintigraphy diagnosed me with full maxillary osteomyelitis, my Internist told me to rush to hospital for months of intravenous antibiotics. So I went to hospital with a big suitcase ready for everything (even losing all my teeth and even the jawbone itself) but the maxillary surgeon examined me and said that the scintigraphy is not conclusive and sent me home recommending another root canal. The Internist disagreed and I took an MRI which also detected maxillary bone marrow edemas, so I was visiting surgeon after surgeon, waiting long to see the most prestigious ones in Spain, and they all said I didn't have osteomyelitis or osteonechrosis, and that all those indications and ideas of Ian and Dr.Munro-Hall were wrong. That I just needed yet another root canal next to the canine. Ian says they are the wrong ones, that they know nothing of this field, that they are not even trained to see the bone infections in the different types of scans or -x-rays.

Finally, when I decided to do that root canal, the endodontist took an x-ray and said I HAD osteomyelitis in the bone surrounding the upper right canine. He said I had to pull and clean. The infection grew a lot and became clear to anyone. So when I finally pulled it and the one next to it, this huge infection with the shape of a steak and around 2 cm (one inch?) came out. The dentist showed it to me, he said it was a huge granuloma, and that the bone will be clean now, no more osteomyelitis. However, I first of all took a sample of the infection to a lab to be anylized, and second I will keep repeating the scintigraphy and scans because I don't tust them. The other (upper left) canine is still there and still hurts (30 years root canal). The sinuses and teeth pain has got even worse. I can breath better from the right nostril now, but not much much better. The left is totally blocked and the pain is horrible yet.

A very very long story, even summarized ... and full of medical mistakes.

I will go step by step until the scans don't show osteomyelitis or anything like that.

 

[nanonug]

I just tried an antihistamine nasal spray rather than tablets to test mast cell involvement. There was no response.

H1 blockers don't do anything for my rhino-sinusitis either. This may offer a clue:

1. Expert Opin Ther Pat. 2012 Mar;22(3):205-21. Epub 2012 Mar 3.

Histamine H4 receptor ligands and their potential therapeutic applications: an
update.

Kiss R, Keserű GM.

mcule.com Ltd., Vendel u. 15-17, H-1096, Budapest, Hungary.

INTRODUCTION: Several studies underlined the critical role of histamine H4
receptor (H4R) in inflammation, thus H4 modulators have been suggested as
promising drug candidates in inflammatory diseases. First H4 ligands typically
have indole or amino-pyrimidine scaffolds. During the last few years, however,
serious efforts have been made to identify novel H4 chemotypes with improved
pharmacodynamic and pharmacokinetic properties. AREAS COVERED: Areas covered in
this review include an overview on H4 ligands published in scientific papers, as
well as in patent applications between 2009 and 2011. Recently discovered
scaffolds possessing significant H4 activity were analyzed and their therapeutic
potential was reviewed. EXPERT OPINION: Recent results from the scientific
literature and novel patent applications reinforce the major role of H4R in
inflammatory diseases such as pruritus, asthma, inflammatory pain and allergic
rhinitis. Novel studies suggest further indications of H4 modulators in cancer,
neuropathic pain, vestibular disorders and type 2 diabetes. The number of active
H4 chemotypes was increased significantly. The first H4 antagonist entered to
clinics and the results from a proof-of-concept Phase II clinical study is
expected to be disclosed soon.

PMID: 22385042

 

[nanonug]

Some ENTs suggested to operate and cut the turbinates and correct the deviated septum, but most of them say it is not justified.

I had both of these procedures done a decade ago. They did not solve the rhino-sinusitis. However, it did improve breathing so I would recommend it!

It isn't clear that the dental or maxillary infections are the cause of the nasal problems, that is what I was expecting to see after pulling these teeth and cleaning the huge infection, but after 4 days it doesn't improve.

I think there is good chance that they might be so this line of thinking, in my opinion, should be pursued. Are you taking antibiotics?

You may also want to take the Spanish equivalent of Listerine. This is really heavy duty stuff and may help a great deal.

A very very long story, even summarized ... and full of medical mistakes.

Yeah, it is sad but unfortunately it happen more often than not!

Hang in there, man and stay focused on getting your problems solved.

 

[MNC]

@nanoung Thanks, the improvement in the breathing after your turbinates operation was permanent? Most ENTs have told me not to do it because the problems always return and there is a risk of having big complications such as the empty nose syndrome, which is awful (losing the whole turbinate).

Yes, I am currently on 200 mg doxycycline, but have taken lots of other powerful antiobiotics with no effect in the past many years.

I also use Listerine daily. Nothing helps.

Thanks a lot

 

[MNC]

@nanoung, by the way, maybe you know something about this:

Right after the tuesday's pulling of the teeth, I left the clinic with some euphoria and well being despite the very traumatic experience. That night I slept very well. The day after I felt so good that I couldn't believe it. I FELT ALMOST CURED OF ME/CFS (meaning the whole body flu/sickness feeling). I was excited, happy, euphoric, laughing. Around 21:00h I had a cold tomato soup for dinner, felt cold all over and suddenly all the ME symptoms returned in 5 minutes. FIrst pain in the sinuses area, nose, lungs, throat, then whole muscles, stomach, prostate, bladder, eyes... eveything back to usual.

I guess what made me feel cured was the anesthesia or the adrenaline or cortisol released by myself when the extraction, but do you (or anyone) know what the real reason could be to make me feel cured for almost one day?

I read that some women recover (at least temporarily) when they get pregnant or have a child, so maybe this is something similar but smaller. Our own hormones or just the nervous system.

Any clues? Thanks.

 

[nanonug]

I guess what made me feel cured was the anesthesia or the adrenaline or cortisol released by myself when the extraction, but do you (or anyone) know what the real reason could be to make me feel cured for almost one day?

Hmm, to be honest with you, I have no idea. Maybe your profound sleep the previous night was the reason? Do you know what kind of anesthesia was used on you?

By the way, regarding my previous post, it is probably a very bad idea to use anything containg alcohol (such as Listerine) while you have the open wound in your mouth...

I read that some women recover (at least temporarily) when they get pregnant or have a child

I suspect this is due to increased progesterone levels, as progesterone is a natural mast cell stabilizer:

1. Int J Immunopathol Pharmacol. 2006 Oct-Dec;19(4):787-94.

Progesterone inhibits mast cell secretion.

Vasiadi M, Kempuraj D, Boucher W, Kalogeromitros D, Theoharides TC.

Department of Pharmacology and Experimental Therapeutics, Tufts University School
of Medicine, Tufts-New England Medical Center, Boston, MA, USA.

Mast cells are involved in allergic reactions, where they secrete numerous
vasoactive, inflammatory and nociceptive mediators in response to immunoglobulin
E (IgE) and antigen. However, they have also been implicated in inflammatory
conditions, such as painful bladder syndrome/interstitial cystitis (PBS/IC),
irritable bowel syndrome (IBS) and migraines, all of which occur more often in
women and are exacerbated during ovulation, but are suppressed during pregnancy.
Mast cells express high affinity estrogen receptors and estradiol augments their
secretion, while tamoxifen inhibits it. Here we report that progesterone (100
nM), but not the structurally related cholesterol, inhibits histamine secretion
from purified rat peritoneal mast cells stimulated immunologically or by
substance P (SP), an effect also documented by electron microscopy. These results
suggest that mast cell secretion may be regulated by progesterone and may explain
the reduced symptoms of certain inflammatory conditions during pregnancy.

PMID: 17166400

 

[nanonug]

the improvement in the breathing after your turbinates operation was permanent?

So far, yes. My turbinates were not cut, though, they were burned.

 

[MNC]

Thanks @nanoung.

No, it wasn't the sleep, definetely. He used anesthesia without adrenaline, but didn't tell me which one (procaine?). He's a great dentist/surgeon/Uni.Teacher and did it so well that I almost felt no pain.

I meant I use Listerine every day, but not with the injuries open, I stopped it and just do water+salt washes.

Very interesting that article relating progesterone to mast cells stabilizing. Since many women recover, at least temporarily, of ME/CFS when pregnant or delivering, this should be further studied if it hasn't been enough yet. Nothing minor but very relevant for all of us.

Ok, if your turbinates haven't got swollen again after many years it's good to hear, because they told me that 50% of the times it doesn't solve the problem or gets much worse. I can do it with surgery or with radiofrecuency (burning?), I can choose, but they recommend radiofrequency (some do some surgery). I keep it in mind.

Thanks a lot.

 

[CBS]

I just tried an antihistamine nasal spray rather than tablets to test mast cell involvement. There was no response. I still think its either an infection or associated with infection such as abnormal immune response which permits infection. Bye, Alex

Hi Alex,
I hope you know that I'm a big fan of yours. I've always appreciated your input and respected your opinion (you have to guess that with an introduction like that there is a "BUT" coming).

The word "its" in your post caught my eye. In the vernacular of the ME/CFS community, I'm definitely a "splitter" and not a "lumper."

As I read the NIH's web-page on mast cell activation diseases (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/), I found myself wanting more information and wishing that screening for this and other disorders was a routine part of a differential diagnosis. From my perspective, part of the reason that ME seems so confusing is laziness and an absence of curiosity on the part of far too many doctors.

I strongly suspect that some subset of ME patients does have some variant of mast cell activation disorder. I also suspect that there is a subset that fits Dr. Lerner's narrowly described group of patients that would be positive using his newly developed antibody tests and who would respond to acyclovir.

When I conceptualize ME/CFS, I cannot stop thinking that at best, "its" a diagnosis and not a disease.

 

[alex3619]

Hi CBS, I do not disagree with you. The "its" was simply a convenient way to say it, given my focus. I do think that the community is highly heterogenous. However when I refer to a singular disorder then its ME. Alternative disorders, cormibidities and so on may well be something else. Now even ME is problematic and might be many disorders. So your point that some may have mast cell disorders is well taken.

With respect to mast cells disorders, I am not convinced that explains most of us. The known ME biochemistry will drive PGD2 synthesis and result in similar symptoms even without mast cell involvement, especially in the brain. That doesn't mean they are not involved, only that they are not necessarily involved - we await the science to figure it out. In addition some of the therapies which work on mast cells may have an impact on ME even if mast cells are not involved, though if antihistamines or other similar approaches work then it does imply some kind of mast cell involvement. Strategies using olive oil extract however, which also suppress mast cells, can be explained without needing to invoke mast cell activity in ME. So its complicated, and we urgently need more science. If mast cells can be proven to be either causal or contributory that would be a major step forward.

Bye, Alex

 

[svetoslav80]

I have CPPS causing fatigue, oesophageal ulcer causing fatigue. I also had gut problems which I think are already gone, which were also causing fatigue, so my conclusion is that many inflammatory disorders cause fatigue, in some people. You may meet many people with the same disorders who don't complain any fatigue, but just pain. I guess we're from the group of unlucky ones who also experience fatigue as a symptom. So no wonder that your chronic sinusitis is causing fatigue for you. Another interesting fact, I have another chronic disorder - chronic infectious inflammatory prostatitis - it doesn't cause any fatigue for me, so I really don't get the logic which inflammatory disorders cause fatigue, and which not.

 

[nanonug]

The known ME biochemistry will drive PGD2 synthesis and result in similar symptoms even without mast cell involvement, especially in the brain.

Mast cells release hundreds of mediators with PGD2 just happening to be highly specific for mast cells when detected in urine. The COPE website has a list of mast cell mediators. One very interesting mediator is neurotensin.

Neurotensin and CRH Interactions Augment Human Mast Cell Activation

 

[alex3619]

Every person releases relatively large quantities of PGD2 every time they sleep (I say relatively because they are eicosanoids and effective at low concentrations), produced in the brain. The quality of sleep is dependent on continuing production of PGD2 in a stable fashion over much of the brain. This has nothing to do with mast cells. It does have a lot to do with things like NO and oxidative stress, particularly glutathione depletion. This ties it into models of methylation cycles too.

The presence of PGD2, in my opinion, does not by itself prove mast cell activation. Its an indicator that needs to be confirmed via alternate tests. The best test appears to be to identify a problem region and perform a biopsy for a mast cell count. In at least some mast cell issues the numbers of mast cells has increased.

Mast cells do indeed make PGD2. So does the brain. In most people most of it is probably from the brain. Other tissues also make PGD2. Immunologists keep citing mast cells ... but read the neurology and they almost never mention mast cells, its all about the brain. Each type of specialist is focusing on their own area.

Without quantities of PGD2 being made by the brain, you cannot sleep. Sleep is impossible. If you keep making far too much then you cannot stay awake.

This of course does not rule out peripheral mast cell involvement, they are separate issues and both need to be considered.

Bye, Alex

 

[nanonug]

The presence of PGD2, in my opinion, does not by itself prove mast cell activation.

We have been down this road before and I disagree with you (with the exception of PGD2 involvement in sleep).

Polycythemia from mast cell activation syndrome: lessons learned.

Abstract: A middle-aged woman presented with fatigue and mild
increases in hematocrit and red cell mass. Polycythemia vera was
diagnosed. She underwent therapeutic phlebotomy but clinically worsened.
On reevaluation, other problems were noted including episodic
malaise, nausea, rash and vasomotor issues. The JAK2V617F mutation
was absent; paraneoplastic erythrocytosis was investigated. Serum
tryptase and urinary N-methylhistamine were normal, but urinary
prostaglandin D2 was elevated. Skin and marrow biopsies showed no
mast cell abnormalities. Extensive other evaluation was negative.
Gastrointestinal tract biopsies were histologically normal but revealed
increased, aberrant mast cells on immunohistochemistry; the
KITD816V mutation was absent. Mast cell activation syndrome, recently
identified as a clonal disorder involving assorted KIT mutations,
was diagnosed. Imatinib 200 mg/d rapidly effected complete, sustained
response. Diagnosis of mast cell activation syndrome is hindered by
multiple factors, but existing therapies for mast cell disease are usually
achieve significant benefit, highlighting the importance of early diagnosis.
Multiple important aspects of clinical reasoning are illustrated by
the case.

 

[MNC]

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.

@nanoung, I am preparing and printing these documents for my doctor tomorrow and I have noticed that the "MCAS Primer for Physicians" one is incomplete, it only has the first page. And there is no link for further reading or anything.

Do you know what I could do to get the whole document?

Thanks

EDIT: Don't worry, I found it. Thanks.

 

[nanonug]

@nanoung, I am preparing and printing these documents for my doctor tomorrow and I have noticed that the "MCAS Primer for Physicians" one is incomplete, it only has the first page [...] Do you know what I could do to get the whole document?

That link gives me the whole document (12 pages). Try to force a reload on the browser...

 

[MNC]

That link gives me the whole document (12 pages). Try to force a reload on the browser...

I found it in Google and worked well. Strange problem.

I improved the document a bit to be easier to read and print. This is in PDF, if you want to keep it for distribution it will be better for people to read it. Just made a better format, didn't change anything.

DELETED

 

[nanonug]

I improved the document a bit to be easier to read and print. This is in PDF, if you want to keep it for distribution it will be better for people to read it. Just made a better format, didn't change anything.

Yes, I was tempted to do that as well but the Copyright Man knocking on my door. (I corresponded with Dr. Afrin and he himself told me the document was a mess! There is however going to be a book in which a chapter is a pretty version of that document.)

I prefer to continue to post the link...