James Skinner

[Auricula]

Thanks, ozij, for dllfo's name. I PMed him to see if he thinks James could do a consult at NJM/RC. I think we all have a lot to learn from James's experience and hope very much that he can find answers to his problems.

[StillAnotherGuest]

Whatever started the nasal problem way back in Nov is still there. Infact if anything it has gotten worse (no surprise since nothing has really been done to correct it) Being off CPAP at least the turbinates are no longer being really irritated.

Whatever the problem is it seems to have invaded my entire airway now. I get lots of clear thick goo a couple times a day but its like nothing I have ever had come out of my nose before. Its watery clear.

Boy, whenever one hears that, it brings to mind cerebrospinal fluid leak:

Cerebrospinal Fluid Leak and Meningitis Associated With Nasal Continuous Positive Airway Pressure Therapy

Pneumocephalus Associated with Nasal Continuous Positive Airway Pressure in a Patient with Sleep Apnea Syndrome

SAG

[Nazareth]

SAG- do you know if that is a problem with full face masks as well?

James, perhaps the surgery will address the tissue mucosa problem as well. I watched a video on a pituitary surgery (Because I had a pit tumor and was nervous about the surgery going up through the nose into the brain cavity) and I msut tell you that after watchign the surgery, and seeing how they can see everythign with the scope up in there, and surgically removing problem areas, I was much less woried about the surgery seeing hte care and precision they employed. In the case of pit surgeries, many patients are up and walking either the very day of hte surgery, or the next- my case was the next day and I was walking around Boston withbout any problems except for being lightheaded (Which I usually am anyways, so it was no big deal to me)

[socknitster]

There was an episode of some medical show where someone had this problem (but it wasn't cpap related) and it seemed very serious. They commented on some "halo" effect his nasal discharge had when it landed on a pillowcase or something. You might look into that--of course it was tv, so I have no idea if it was accurate. This sounds pretty serious and I would seriously make sure it was carefully ruled out. Good work, SAG. I don't see you on the board anymore much, but glad to see you are still out there contributing good stuff!


Jen

[SAG the Guest Again]

SAG- do you know if that is a problem with full face masks as well?

Well, it strikes me that the only "safe" mask, as used in Patient #1 in the Kuzniar article, would be an oral-only interface (Oracle). If you can get it to work properly (and I see where james, unfortunately, could not), it would avoid pressure on anything in the nasal passage area. I have seen some success in patients with sinusitis issues. So while CSF leaks are real "back-of-the-book" stuff (but boy, couple this with those aforementioned neurological symptoms, and you start to think that it's more than a coincidence), an oral interface might be the way to go regardless of the origin of the nasal problems.

There was an episode of some medical show where someone had this problem (but it wasn't cpap related) and it seemed very serious. They commented on some "halo" effect his nasal discharge had when it landed on a pillowcase or something.

I think that only works when you have a blood-CSF mixture, as after head trauma.

...SAG. I don't see you on the board anymore much...

Yeah, rediscovered "Tetris". Nothing like the thrill of an "UltraLine"!
SAG

[Guest]

SAG- I have an oracle mask and I can't use it because I have a particular problem in that I have an ostomy, and the aerophagia creates major problems with the pouch filling up with air to point of bursting off during night while asleep. I only used it two nights, but was dissappointed that it caused the aerophagia that it did as I really wanted that mask to work for me as it really does give one quite a bit of freedom as far as being able to move around without leaks, being able to sleep on side, doesn't cover the face etc. Even a full face mask causes ostomy pouch problems with me, but less so than the oracle mask for some reason, but I'm finding that I'm gonna have to use an alarm to wake me at 6:00 am to put hte maks on for a fewm ore hours of sleep to cut cut down on the air problem. Anyway, I can see where an oracle oral mask might help to dry up the nasal passages as it does kind of shoot air in through mouth and comes out hte nose unless you plug the nose, but air will still circulate up into the nasal passages even plugging the nose in my experience. It might be worth a shot to try that for James.

[jskinner]

air will still circulate up into the nasal passages even plugging the nose in my experience. It might be worth a shot to try that for James.

I used the Oracle mask for 2.5 months. It was probably the worse 2.5 months of my life. For me the pressure in the nose was still about the same as using a nasal mask, when you pressurize the cavity it doesn't really matter where your putting the air in. Keeping the nose sealed was a big problem. Sleeping was just about impossible for me with it due to upper pallet flapping.

[Guest]

I've been to National Jewish a couple of times. The guy that used to run the sleep lab, Robert Ballard (MD) is now at St Joseph's in Denver. He was great to work with and very precise in his evaluation. However, National Jewish has a long waiting list last time I was in Denver (Dec 2006) so get in touch with them sooner than later if you're interested. They are very much a research hospital, no acute care at all---no ER anymore actually. However, they are very well funded and expanding on their little piece of real estate at Colfax and Colorado Blvd in Denver. I would contact them via their email nurse line and ask what the options are for a Canadian coming in for assessment.

I'd also suggest contacting a guy, Robert Ivker (DO/MD) in Denver, who is a guru of sinus problems. His book, Sinus Survival, I believe is going into its 8th printing. I've met him several times and he is a good egg and does very inexpensive (relative) consults with patients from all over the planet who have "incurable" sinus problems. His program has produced the best results for me and my sinus problems of any approach used, and I've had 5 sinus surgeries with mixed results. For me, besides carefully following his recommendations, changing diet has made a huge change in my overall health. Another author wrote a book a few years ago about how food impacts your state of inflammation and perception of pain. Neal Barnard (MD) I believe is the guy's name, never met him. Solid biochemistry.

I live in Canada (Ontario) as well and have had severe mixed experiences with the medical system here. Generally not so great, particularly with ENTs and ER docs. I do believe the standard of patient care in the U.S. is much higher than here, but what can we do about that in the short term? Not much. I'm also not sure a trip to Mayo will help, and it will surely cost you a bundle just to have a confirmed reservation. (Yes, I almost went that route myself not long ago.)

I hope these two suggestions help and that you can find an astute diagnostician very soon that can determine what is causing this complex symptomatology you have been fighting for such a long time. From your brief symptomatic notes it sounds like you have an overwhelming Candida infection, but getting a doc in Canada to treat you is probably impossible as they are not trained to diagnose or treat such an infection in men. Again, I have tried and failed, had to go to the U.S. to get a script---and it worked. (Diflucan---for several weeks (6))

PM me if you need phone numbers.

Peace

[PeaceSleeper]

System logged me out. Last post from PeaceSleeper.

[jskinner]

From your brief symptomatic notes it sounds like you have an overwhelming Candida infection, but getting a doc in Canada to treat you is probably impossible as they are not trained to diagnose or treat such an infection in men. Again, I have tried and failed, had to go to the U.S. to get a script---and it worked. (Diflucan---for several weeks (6))

yeah a Candida infection seems to be the only thing that makes any sense at this point (but the actual diagnose is wide open in my mind). The nasal antifugal and Nystatin combo the last few weeks seems to be the only thing that has made even a small improvement, it just may not be powerful enough. Looking back things got really bad when my GP put my on 3 rounds of antibiotics, which might make since since that would have allowed fungus to spread. To me whatever is wrong in there has affected my nose, tongue, and throat. I think its even possible that my lungs are affected since I have some chest discomfort but I feel so crappy much of the time that its hard to know for sure.

I have brought up the possibility of a fungal infection to every ENT that I have seen and the all dismiss it without even exploring the idea. The last one that I saw, while i like and respect him, said that the idea that nasal problems where fungal related was a fad in the late '90

[socknitster]

IF this started after a round of antibiotics I would take it very seriously as a possiblity.

I've had doctors scoff when I say I'm allergic to milk and get rhinitis symptoms along with gastro intestinal. But they are dead wrong. I have only to eat a small amount of milk product to re-confirm this diagnosis (which ironically came from an ent--but I'm in the US). My ent is the only doctor in the world who has ever taken all my symptoms seriously and now between having my allergies under control and apnea under control, I no longer have any of the bizarre, debilitating symptoms that used to make doctors (and even some of my family) treat me like a hypochondriac.

I once got thrush (a fungal infection of the breast/nipple--and sometimes baby's mouth, sorry if it makes you woozy lol) when I was breastfeeding my son. I nursed him in pain for most of a year before I finally weaned him. It would not heal as long as he was nursing. He was completely asymptomatic. I did EVERYTHING the doctors, nurses and lactation nurses told me to do and it wouldn't go away--itching, burning and pain, but no visible sores or cracks on the nipple. They gave me some kind of topical anti-fungal (actually I think it was nystatin), but that didn't do anything.

I begged the docs for diflucan, but they wouldn't do it. They insisted that systemic treatment wasn't indicated. I guess they worried about hurting my son, but getting a dose of fungus every time he nursed couldn't have helped him either, although breastmilk is often used in third world countries to fight topical infections, so perhaps the milk itself protected him.

Anyway, what I'm trying to say is--fungus can be damn hard to clear up. You might try an doc with a diff specialty instead of ent's. Who would treat a fungal infection like this? An infectious disease specialist? Does anyone know?

You need bigger guns than nystatin. See if you can get your gp to agree to try diflucan. Ask them if it could hurt you to just try it and see. I cannot imagine that it could possibly hurt you. I know when I once told a doc I thought I might have picked up a parasite in central america, they didn't hesitate to give me strong deworming meds--why should a suspected fungal infection be any different? It turned out, it was probably just my food allergy causing the intense intestinal distress I was having at the time, but it was better safe than sorry at that point.

This sounds like a very likely answer to your problem. Keep pursuing it. At this point I can't imagine any doctor who really cares about your outcome wouldn't trial diflucan considering you have exhausted everything else and you think the nystatin is helping.

I wish the very best for you, Jen

[jskinner]

IF this started after a round of antibiotics I would take it very seriously as a possiblity.

Well it didn't start then but before then the problem just seemed to be in my nose only and wasn't nearly as bad. Dr. thought it might be fungal and then put me on an oral antifungal + antibiotics. It seemed to improve some and then he followed up with 2 more rounds of antibiotics. Thats when all hell broke loose (you might remember the pics of the thrush in my mouth)

You need bigger guns than nystatin. See if you can get your gp to agree to try diflucan.

Fat chance I think. My new GP doesn't seem to get the seriousness of the situation. She is a new Dr and seems quite arrogant (I know is hard to believe that a Dr is arrogant . I had a hard time getting the nystatin.

Ask them if it could hurt you to just try it and see. I cannot imagine that it could possibly hurt you.

My understanding is that oral antifungals are pretty hard on the body. I don't think you really want to take then unless necessary?

-james

[socknitster]

Then I would insist on a biopsy of the affected tissue to be sent to the best diagnosic lab in the country. That is the only way you will find out for sure. YOur ent can do this at the time of your nasal surgery if you decide to go thru with that.

Jen

[RosemaryB]

James, I'm thinking of you and hoping the best for you. I did a little looking around and here are a couple of things that might be of interest.

First is the Office of Rare Diseases at the U.S. NIH. Apparently they will answer questions and have a phone number you can call. http://rarediseases.info.nih.gov/ One thing that they might be able to do is hook you up with anyone doing research that might pertain to your condition.

Second, I found this article about underlying mechanisms of treatment resistant sinus infections that might be of interest. I kept seeing references to this in other places. Here's an excerpt:

Because nearly one in 10 of those treated see symptoms return within weeks or months after drugs or surgery fail to keep the sinus passages open, scientists have long suspected that these resistant cases had some underlying problem with the immune system contributing to the ailment.

In a study to be described on Sept. 19 at the annual scientific sessions of the American Academy of Otolaryngology, Head and Neck Surgery, the Hopkins team found that in chronic sufferers who failed to respond to treatment, the activity of at least four genes in the body's nasal immune defense system were severely decreased, and their production of two proteins critical to this defense was 20 to 200 times less than normal.

Comparing nasal epithelial cell samples from nine patients who benefited from surgery with nine who did not, the Hopkins team discovered suppressed levels of human beta defensin 2 (HBD2) and mannose binding lectin (MBL) in those whose symptoms returned. The proteins are naturally produced in the nose whenever the immune system detects foreign bacteria or fungi, binding to invading pathogens, inactivating them and making them easily disposed of.

Rest of the article is at this link:
http://www.sciencedaily.com/releases/20 ... 012348.htm

Is there any chance they could justify some tests like this to see how you are likely to respond to surgery?

ETA: Here's another article from Johns Hopkins.

A team of Hopkins sinus experts has found that the gene for the enzyme, acidic mammalian chitinase (AMCase), is up to 250 times more active in people with severe sinus inflammation that persists even after surgery when compared to patients in whom surgery is successful. Sinus surgery is usually the treatment of last resort for those who do not respond to drug therapy. But nearly one in 10 of those treated see symptoms return within weeks or months after surgery fails to keep open the nasal passages, scientists say.

The Hopkins report, published in the July issue of the American Journal of Rhinology, is believed to be the first to identify the enzyme's presence in the nose and confirm its link to sinusitis.

"This finding does not mean that there are actually parasites in the nose causing sinusitis, but our study does lend support to the concept that really severe and persistent sinusitis may be a case of a misplaced immune response directed against parasites that are not really there," says study lead author Andrew Lane, M.D., an associate professor at The Johns Hopkins University School of Medicine and director of its rhinology and sinus surgery center.

Previous research by other scientists had looked at the enzyme's tie-ins to asthma, which, like nasal polyps, is an inflammatory response of the body's immune system. The theory, Lane says, is that allergies and asthma result from genes that control the body's defenses against parasites, but these genes are dormant in healthy people. However, when turned on by so-called ghost parasites, the potent inflammatory response is medically very difficult to control.

http://www.sciencedaily.com/releases/20 ... 103128.htm

It looks like Johns Hopkins is doing some relevant research. Perhaps you might contact them.

[goose]

Hey James,
Not to go off on a tangent, but what really got my attention was the partial paralysis and the racing heart.....
Have you been checked for TIA's??? I don't recall what that stands for but my mom has them and they're like mini-strokes. They can temporarily give symptoms of having a full blown stroke, but they go away after a short time. The racing heart and the tingling "extremities" is what kind of points me at that -- what's your BP?? Normal Resting?? Heart Racing??

I tend to agree with the last set of posts regarding the fungus aspect!!
Jen's right, get a biopsy of the affected tissues and that will hopefully be able to rule things in or out -- you can move on from there but until the docs understand what they're dealing with, they're just shooting in the dark in my opinion (instead of just poo pooing and ruling things out without testing -- I would have thought the younger docs would be more open to possibilities as they've just been through the latest and greatest training and exposed to the latest research -- but then that "God complex" happens). I really feel for your suffering!!!!

Good vibes and Karma points coming to you!!!!!

cheers
goose