Fungal infection?
James, I don't think anyone who has followed your saga is untouched by all you have done to try to recover and sorry that you have not found good medical help. Today I did some more reading on sinus infections online.
Although you seem to be leaning away from thinking you have a fungal infection, it might be good to continue researching this until you have a diagnosis since whatever you have is quite mysterious. In reading about the subject, I learned of Dr. Scott F. Davies, an M.D. and university professor from U.Minnesota, who lists his research interests as "deep fungal infections." He has co-authored the book Fungal Diseases of the Lung. I wonder if he would be interested in your case? If you sent him an email maybe he would be able to help you directly or refer you to someone in Ottawa who could help you. scott.davies@co.hennepin.mn.us Sometimes, surprisingly, the busiest people will take the time to give you a hand.
http://www.co-cure.org/drt7.htm Among the causes listed for fungal infections are repeated or long-term antibiotic use, high sugar intake, and extensive use of high-dose prednisone and other steroids.
Check out the material from a moderated chat from May 2002 on the topic of fungal infections and sinus disease:
http://www.talkaboutsleep.com/sleep-dis ... nox.htm#40
I found an extraordinary article on "noncandidal fungal infections of the mouth" at this site http://www.emedicine.com/derm/topic659.htm The article discusses six noncandidal oral infections: aspergillosis, cryptococcosis, histoplasmosis, blastomycosis, paracoccidioidomycosis, and mucormycosis. It's possible that you are not being cultured for the right thing. The article is pretty technical but it is well worth reading so you can be the best possible advocate in seeking a diagnosis and treatment. I found the website when I googled "deep fungal infections of the sinuses" and there's a lot more information available.
http://lib.bioinfo.pl/auth:Kadota,J New antifungal agents are discussed.
I hope we will all hear very soon that you are on the way to recovery. Auricula
Quote: "Merry and tranquil! Tedious and brief!
That is, hot ice and wondrous strange snow."
Shakespeare, A Midsummer Night's Dream
Although you seem to be leaning away from thinking you have a fungal infection, it might be good to continue researching this until you have a diagnosis since whatever you have is quite mysterious. In reading about the subject, I learned of Dr. Scott F. Davies, an M.D. and university professor from U.Minnesota, who lists his research interests as "deep fungal infections." He has co-authored the book Fungal Diseases of the Lung. I wonder if he would be interested in your case? If you sent him an email maybe he would be able to help you directly or refer you to someone in Ottawa who could help you. scott.davies@co.hennepin.mn.us Sometimes, surprisingly, the busiest people will take the time to give you a hand.
http://www.co-cure.org/drt7.htm Among the causes listed for fungal infections are repeated or long-term antibiotic use, high sugar intake, and extensive use of high-dose prednisone and other steroids.
Check out the material from a moderated chat from May 2002 on the topic of fungal infections and sinus disease:
http://www.talkaboutsleep.com/sleep-dis ... nox.htm#40
I found an extraordinary article on "noncandidal fungal infections of the mouth" at this site http://www.emedicine.com/derm/topic659.htm The article discusses six noncandidal oral infections: aspergillosis, cryptococcosis, histoplasmosis, blastomycosis, paracoccidioidomycosis, and mucormycosis. It's possible that you are not being cultured for the right thing. The article is pretty technical but it is well worth reading so you can be the best possible advocate in seeking a diagnosis and treatment. I found the website when I googled "deep fungal infections of the sinuses" and there's a lot more information available.
http://lib.bioinfo.pl/auth:Kadota,J New antifungal agents are discussed.
I hope we will all hear very soon that you are on the way to recovery. Auricula
Quote: "Merry and tranquil! Tedious and brief!
That is, hot ice and wondrous strange snow."
Shakespeare, A Midsummer Night's Dream
- jskinner
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Yeah given the emergence of the oral thrush it now appear very likely the fungal infection is in fact the problem. (at least thats my current belief)Auricula wrote:Although you seem to be leaning away from thinking you have a fungal infection
Done. thanks.Auricula wrote: If you sent him an email maybe he would be able to help you directly or refer you to someone in Ottawa who could help you.
Yeah I keep wondering if talking the antibiotics is smart. Until 2 weeks ago I hadn't been on antibiotics in years. The fact that I have been on corticosteroids for years seems suspect...Auricula wrote: Among the causes listed for fungal infections are repeated or long-term antibiotic use, high sugar intake, and extensive use of high-dose prednisone and other steroids.
Well I have only been cultured once so if not being cultured is not the right way then you are correctAuricula wrote:It's possible that you are not being cultured for the right thing.
Thank you. One of the worse parts if being so tried since my nose isn't working that well and thus CPAP not working that well. At least the past 3-4 days I have been able to switch back to nasal CPAP from oral. Still not great since by morning its swelling shut but at least it controls the apnea better.Auricula wrote:I hope we will all hear very soon that you are on the way to recovery.
Good Lord Jim. . Yes, I just looked at your tongue picture. WOW.
Is this the first time the doc has put you on Nystatin? And just so you know, Nystatin comes in several forms.
There is a cream that you could swab up into your nose.
There is the liquid, Swish and Swallow.
There is also a lozenge - which my doctor likes because it stays in the mouth longer than the swish and swallow.
You might ask for all three.
And a yeast infection is usually caused by "antibiotics". So stay clear of them for awhile.
You poor man.
(On a really gross side note, just so you guys can feel sorry for us ladies): What you have in your mouth is what ladies sometimes get "elsewhere" -- it's not fun.
Is this the first time the doc has put you on Nystatin? And just so you know, Nystatin comes in several forms.
There is a cream that you could swab up into your nose.
There is the liquid, Swish and Swallow.
There is also a lozenge - which my doctor likes because it stays in the mouth longer than the swish and swallow.
You might ask for all three.
And a yeast infection is usually caused by "antibiotics". So stay clear of them for awhile.
You poor man.
(On a really gross side note, just so you guys can feel sorry for us ladies): What you have in your mouth is what ladies sometimes get "elsewhere" -- it's not fun.
_________________
Machine: DreamStation Auto CPAP Machine |
Humidifier: DreamStation Heated Humidifier |
Additional Comments: Compliant since April 2003. (De-cap-itated Aura). |
But I'm not sure that you should scrape it off. There are sores underneath that "cottage cheese". To me, it would be like picking off a scab and letting the sore get infected.
_________________
Machine: DreamStation Auto CPAP Machine |
Humidifier: DreamStation Heated Humidifier |
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I just read some reviews of Sinus Survival: The Holistic Medical Treatment for Allergies, Asthma, Bronchitis, Colds, and Sinusitis by Robert Ivker. He links sinus problems with candida as well as increased outdoor air pollution and poorer indoor air quality in our homes.
http://ahha.org/articles.asp?Id=39
http://www.amazon.ca/Sinus-Survival-Rob ... 0874778077
http://www.findarticles.com/p/articles/ ... i_95676540
http://ahha.org/articles.asp?Id=39
http://www.amazon.ca/Sinus-Survival-Rob ... 0874778077
http://www.findarticles.com/p/articles/ ... i_95676540
Like many others here, James, I have been very sorry to hear about your problems. Most of the recent ideas that have crossed my mind in regards to this ailment involve a multifactorial explanation of the cause, but I am thinking about a particular ailment that is referred to as allergic fungal sinusitis. Young-ish adults, and especially those with nasal polyps, are the usual suspects. And I would bet that puts you in that category. Although I am a doctor, (but I don’t play one on TV), I want to emphasize that this is not my area of expertise, and that I am not attempting to diagnose or treat you. I think you understand that, but it bears repeating.
At the risk of getting a little too personal, your recent photo looks remarkably different to me than the one that was up when I first showed up on the board a couple of months ago. There is a term in medicine called proptosis. Do your eyes seem a little more protuberant in conjuction with the misery that you’re experiencing? If so, this would be potentially be consistent with extensive sinus involvement.
Symptoms of what I suspect are pretty dang similar to what you’ve described, James. The problem I am referring to is most likely the endpoint in a spectrum of sinonasal disease, driven by the presence of fungus accompanied by inflammatory cell mediators. The affected nasal mucosa no longer functions properly, and a cycle of chronic edema, stasis, and bacterial superinfection results. Therapy entails disrupting the inflammatory process to allow normal mucosal function to resume.
Allergic fungal sinusitis (I'm going to call it AFS from now on, although the acronym is not in common use, i.e., I made it up!) is related to a hypersensitivity reaction to fungal antigens. Lots of fungal agents have been implicated, but most are from the “Dematiaceae” family. Labs show a marked increase in eosinophilia and total IgE (that’s basically an allergic reaction response).
AFS was initially described in the medical literature about 20 years ago. There have been a number of efforts to fully define and explain the disorder, but it has been loosely described as the sinonasal equivalent of allergic bronchopulmonary aspergillosis. It can’t be categorized that easily, but if you were to Google “allergic bronchopulmonary aspergillosis”, you’d get a pretty good idea.
AFS is not only difficult to diagnose, but it is one of the most complicated conditions to manage. You pretty much have to undergo sinus surgery (usually endoscopic) and also include long-term medical therapy, oral and nasal corticosteroids, immunotherapy, antifungal therapy, and antimicrobial agents to effectively control the problem.
CT and MRI findings can be quite distinctive, but alone are not diagnostic. Diagnosis requires histopathologic examination, which shows characteristic allergic mucin.
Treatment of AFS usually requires exenteration (i.e., scraping out) of all allergic mucin, often (but not always) accomplished endoscopically. Adjunctive short-term steroids taken by mouth are often helpful, and nasal steroid sprays are usually needed long term. The length and dose of steroid therapy is controversial, so don’t ask me.
Unfortunately, recurrence of sinonasal symptoms can occur particularly when there has been incomplete removal of allergic fungal mucin. Recurrence presumably is a result of reexposure to fungal antigens. Therefore close clinical, endoscopic, and radiographic follow-up is important.
Caveat: I am not diagnosing you, nor prescribing any particular treatment plan. I’m just speculating about what may be the reason you’re having such horrendous problems. I very well could be entirely mistaken. But, either way, I wish you well, James. If it were me, I would go to a well known, academically affiliated institution for further workup and treatment ideas.
At the risk of getting a little too personal, your recent photo looks remarkably different to me than the one that was up when I first showed up on the board a couple of months ago. There is a term in medicine called proptosis. Do your eyes seem a little more protuberant in conjuction with the misery that you’re experiencing? If so, this would be potentially be consistent with extensive sinus involvement.
Symptoms of what I suspect are pretty dang similar to what you’ve described, James. The problem I am referring to is most likely the endpoint in a spectrum of sinonasal disease, driven by the presence of fungus accompanied by inflammatory cell mediators. The affected nasal mucosa no longer functions properly, and a cycle of chronic edema, stasis, and bacterial superinfection results. Therapy entails disrupting the inflammatory process to allow normal mucosal function to resume.
Allergic fungal sinusitis (I'm going to call it AFS from now on, although the acronym is not in common use, i.e., I made it up!) is related to a hypersensitivity reaction to fungal antigens. Lots of fungal agents have been implicated, but most are from the “Dematiaceae” family. Labs show a marked increase in eosinophilia and total IgE (that’s basically an allergic reaction response).
AFS was initially described in the medical literature about 20 years ago. There have been a number of efforts to fully define and explain the disorder, but it has been loosely described as the sinonasal equivalent of allergic bronchopulmonary aspergillosis. It can’t be categorized that easily, but if you were to Google “allergic bronchopulmonary aspergillosis”, you’d get a pretty good idea.
AFS is not only difficult to diagnose, but it is one of the most complicated conditions to manage. You pretty much have to undergo sinus surgery (usually endoscopic) and also include long-term medical therapy, oral and nasal corticosteroids, immunotherapy, antifungal therapy, and antimicrobial agents to effectively control the problem.
CT and MRI findings can be quite distinctive, but alone are not diagnostic. Diagnosis requires histopathologic examination, which shows characteristic allergic mucin.
Treatment of AFS usually requires exenteration (i.e., scraping out) of all allergic mucin, often (but not always) accomplished endoscopically. Adjunctive short-term steroids taken by mouth are often helpful, and nasal steroid sprays are usually needed long term. The length and dose of steroid therapy is controversial, so don’t ask me.
Unfortunately, recurrence of sinonasal symptoms can occur particularly when there has been incomplete removal of allergic fungal mucin. Recurrence presumably is a result of reexposure to fungal antigens. Therefore close clinical, endoscopic, and radiographic follow-up is important.
Caveat: I am not diagnosing you, nor prescribing any particular treatment plan. I’m just speculating about what may be the reason you’re having such horrendous problems. I very well could be entirely mistaken. But, either way, I wish you well, James. If it were me, I would go to a well known, academically affiliated institution for further workup and treatment ideas.
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- jskinner
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thanks drbandage. This theory does indeed seem quite plausible. I'll post some more regarding it when I have a bit more energy. Thanks again for the time and thought you've put into this.
In the mean time here is a question for everyone. It seem to me that if I have anything more than a couple of minutes 'time in apnea' then I feel extremely bad the next day. Is this consistent with other experience?
How much 'time in apnea' and/or total events before you start noticing a big impact the next day? I'm wondering if there is some common threshold?
In the mean time here is a question for everyone. It seem to me that if I have anything more than a couple of minutes 'time in apnea' then I feel extremely bad the next day. Is this consistent with other experience?
How much 'time in apnea' and/or total events before you start noticing a big impact the next day? I'm wondering if there is some common threshold?
I rarely have that problem, but when I do I can feel it, and if I have a second bad day the effects seem to cascade. Jimjskinner wrote:thanks drbandage. This theory does indeed seem quite plausible. I'll post some more regarding it when I have a bit more energy. Thanks again for the time and thought you've put into this.
In the mean time here is a question for everyone. It seem to me that if I have anything more than a couple of minutes 'time in apnea' then I feel extremely bad the next day. Is this consistent with other experience?
How much 'time in apnea' and/or total events before you start noticing a big impact the next day? I'm wondering if there is some common threshold?
Use data to optimize your xPAP treatment!
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire
jskinner wrote:thanks drbandage. This theory does indeed seem quite plausible. I'll post some more regarding it when I have a bit more energy. Thanks again for the time and thought you've put into this.
Hi James -
Here's a couple of quick tid-bits about the ailment I mentioned.
Clinical: Patients with AFS normally present with signs and symptoms of nasal airway obstruction, allergic rhinitis, or chronic sinusitis that includes nasal congestion, purulent rhinorrhea, postnasal drainage, or headaches. Patients typically complain of gradual nasal airway obstruction.
Allergic fungal mucin (that's docSpeak for snot) is thick, tenacious, and highly viscous. Its color may vary from light tan to brown or dark green. Its characteristic appearance has resulted in the use of such descriptive terms as peanut butter and axle grease when referring to allergic fungal mucin.
Also, here's a very fine link: http://www.emedicine.com/Ent/topic510.htm
I don't know if that helps, but maybe more clues . . .
Now, where's my peanut butter and jelly sandwich?
Dead Tired? Maybe you're sleeping with the Enemy.
Know Your Snore Score.
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Ahhhh. A doctor who "ain't" afraid to say "snot". My kinda doc for sure!
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I've been out of town and I am so sorry to hear you are still struggling with this!
The picture looks just like the thrush my kids and I had when I was nursing, which is hardly diagnostic...
Sounds like everyone has the medical advice covered, but you might consider seeing a naturopath, they are generally more in tune to the health effects of fungi. If you search for info on chronic Candida infections there are lots of things you could try in your diet to support your body. For the record I am totally in favor of western medicine, I just think if there is something you can do at home to increase your comfort like eat more garlic, or something similar you might as well.
Good luck, thrush of the mammary glands was a whole lot of no fun, I can't imagine how bad it would be in the nose and mouth.
The picture looks just like the thrush my kids and I had when I was nursing, which is hardly diagnostic...
Sounds like everyone has the medical advice covered, but you might consider seeing a naturopath, they are generally more in tune to the health effects of fungi. If you search for info on chronic Candida infections there are lots of things you could try in your diet to support your body. For the record I am totally in favor of western medicine, I just think if there is something you can do at home to increase your comfort like eat more garlic, or something similar you might as well.
Good luck, thrush of the mammary glands was a whole lot of no fun, I can't imagine how bad it would be in the nose and mouth.
James and drbandage- I agree about the facial changes in James' photographs. Multifactorial thus comes to mind for me as well (but I'm absolutely no health expert!!!). James' facial changes are very similar to my aunt's when she experienced a thyroid disorder. I also happened across the following oral condition, which can be secondary to thyroid disorder:
Chronic Mucocutaneous Candidiasis
- this is a persistent Candida infection, that is unresponsive to medical treatment.
* Appears in the mouth and the skin.
* Usually starts during infancy or childhood. May be accompanied with a persistent oral thrush, which sometimes can be hypertrophic, (increase in size) or it can produce thickened plaques in the mouth.
* Others will present with an intertrigo flexural persistent Candida infection (inflamed skin surfaces)There are some who will show chronic paronychia with redness around the nail folds.
* This is a genetic condition, that can be either recessive or dominant. It can also be secondary to a number of endocrine disorders such as hypothyroidism or hypoparathyroidism.
* There is also a late onset variant that is seen in individuals with connective tissue disease such as systemic lupus.
* The immunological defects are usually seen in those who have white cells that are unable to phagocytose (kill) yeasts.
* The defects will be seen in polymorphs (immune system) and macrophage (healing) function. There is usually a deficiency in the enzyme found in white blood cells (myeloperoxidase).
The above description was found on:
http://www.fungalguide.ca/types/conditi ... ndida.html
As a side note, I believe the severity/occurrence of apnea can be secondary to hypothyroidism as well.
Sorry if this description does not match what you have, James. We're still hoping you get better real soon!!!!
Chronic Mucocutaneous Candidiasis
- this is a persistent Candida infection, that is unresponsive to medical treatment.
* Appears in the mouth and the skin.
* Usually starts during infancy or childhood. May be accompanied with a persistent oral thrush, which sometimes can be hypertrophic, (increase in size) or it can produce thickened plaques in the mouth.
* Others will present with an intertrigo flexural persistent Candida infection (inflamed skin surfaces)There are some who will show chronic paronychia with redness around the nail folds.
* This is a genetic condition, that can be either recessive or dominant. It can also be secondary to a number of endocrine disorders such as hypothyroidism or hypoparathyroidism.
* There is also a late onset variant that is seen in individuals with connective tissue disease such as systemic lupus.
* The immunological defects are usually seen in those who have white cells that are unable to phagocytose (kill) yeasts.
* The defects will be seen in polymorphs (immune system) and macrophage (healing) function. There is usually a deficiency in the enzyme found in white blood cells (myeloperoxidase).
The above description was found on:
http://www.fungalguide.ca/types/conditi ... ndida.html
As a side note, I believe the severity/occurrence of apnea can be secondary to hypothyroidism as well.
Sorry if this description does not match what you have, James. We're still hoping you get better real soon!!!!
James, I hope we're not scaring the crap outta you -- we're just trying to help and want you to get better.
That said, , what SWS said about hypothyroidism rang a bell with me. I got two cases of thrushmouth about the time I was diagnosed with hypothyroidism.
But another thing I saw on TV today, it was a commercial for Flonase or Nasacort -- and it said that a side affect could be viral infection of the sinus cavities.
Please take care -- and have a nice trip home. Your mama will make you feel better. ..
That said, , what SWS said about hypothyroidism rang a bell with me. I got two cases of thrushmouth about the time I was diagnosed with hypothyroidism.
But another thing I saw on TV today, it was a commercial for Flonase or Nasacort -- and it said that a side affect could be viral infection of the sinus cavities.
Please take care -- and have a nice trip home. Your mama will make you feel better. ..
_________________
Machine: DreamStation Auto CPAP Machine |
Humidifier: DreamStation Heated Humidifier |
Additional Comments: Compliant since April 2003. (De-cap-itated Aura). |