Lastest on my ongoing saga

What does the NeilMed contain?

Di

Moby wrote:What does the NeilMed contain?

pH Balanced Sodium Chloride & Sodium Bicarbonate Mixture

http://www.unimedprod.com/products.shtml

jskinner wrote:the surgeon from Halifax called me back and said that after doing more analysis he thinks he can do an MMA after all. Normally they like to add 10mm. With me they can only do 5mm on my upper and lower jaw and then they would to an advancement 5mm on my chin. I've agreed to it at this point. I am going to Kingston, ON next week to get a second opinion from Dr. Michael Fitzpatrick

Is there any chance you can have both those doctors consult with Dr. Kasey Li at Stanford? Especially about what the Halifax surgeon plans to do?

rested gal wrote:Is there any chance you can have both those doctors consult with Dr. Kasey Li at Stanford? Especially about what the Halifax surgeon plans to do?

I actually contacted Dr. Kasey Li via email in late November after my first visit with the Halifax surgeon since he was unsure if he would be able to do the MMA. Dr. Li responded right away and asked me send him a copy of my x-ray and sleep study. He responded and said that he believed that MMA would be an option for me. He said it might not be a complete cure for me but that I should see improvement.

I do have a lot of faith in Dr. Goodday. He is one of the first Drs. that I have seen that seemed to be really understanding and knowledgeable. He has written a chapter in a medical book on MMA and gave me a copy to help me understand the procedure better. For copy right reasons I won't post a link to it there but if anyone is interested in understanding MMA better PM me and I will get you a copy.

James,

I just read thru the documentation of your ordeal. I feel so angry and frustrated at your medical care when it is just jumping out at me what the problem in your nose is. Both antibiotics and steroids will give a fungal or yeast infection an opportunity for overgrowth. This is so well documented in women with yeast infections of the vagina or ANYONE getting overgrowth of various microorganisms in the bowel. Why shouldn't it happen in another similar location like the nasal cavities--dark, damp, moist, tons of mucous to feed on.

You have been on and off both steroids (which supress the immune system) and antibiotics (which kill of good and bad bacteria, leaving nothing to keep any other microorganisms in check) so many times over the last 15 months I cannot believe your doctors cannot see this. These wee beasties obviously are deeply rooted in your nasal tissue and may even be affecting your throat as well. The pictures you show are so clear--this white foamy stuff is an overgrowth of a microorganism! ANd the thrush in your mouth--clearly related! I had thrush in my breasts while nursing my son--this is serious stuff and HARD TO GET RID OF! For me, it lived in my milk ducts and I couldn't get rid of it with topicals (which is all my doctor was willing to prescribe). It didn't go away until I weaned him.

You need to be on some kind of antifungal for a very, very long time--until the issue completely and totally goes away. The fact that the nystatin worked the first time but not the second is also quite clear. You weren't on it long enough, or it wasn't strong enough, the first time and any subsequent use of this particular antifungal would be useless because these organisms would be immune--much like antibiotic immunity. Your body is trying to fight this by producting so much mucous. Which in turn is probably feeding the organisms.

I suspect that this started in your condo with the mold problem. With spores of a multitude of organisms in the apartment attracted and growing in the moist environment, the cpap was delivering them deeply and constantly in large volumes to your nasal cavities. I wouldn't be surprised at all to learn that any filters that are on our devices are inadequate. Look how dinky and small they are!

It looks as though you are finally on a track where you will receive some help. I agree that an infectious disease specialist is a MUST. Get one of your doctors to refer you to one. All you need do is show them these photos of this foamy white stuff in your nose.

I believe you have two issues which aren't completely unrelated but must be addressed separately. The nasal/oral infection and the airway collapse.

And I have a constructive comment. Your detailed description of this ordeal is heart rending and I know you are desperate and you are trying to gain the doctor's sympathy. My concern is that the doctor will not take the time to read the entire document and may miss some important points.

My recommendation is this. Go thru the entire document and state the facts only, not mentioning your frustration and emotions, only concrete observations. This will shorten the document considerably. Then add a final page, describing your feelings throughout the ordeal. He or she may or may not read the final page, but you will have gotten these terrible feelings on paper and he or she very well may read these thoughts and be understanding.

I think that just the facts, presented as concisely as possible, show the frustration and desperation well enough, without any embellishment because you clearly went from doctor to doctor only getting worse as time went on. But do include the photos. Especially the ones of before and during. They so clearly show that something is terribly amiss. And they humanize you as well, reminding the doctor you are not just his 4 oclock patient, but a complex person who is suffering.

I applaud your tenacity. Despite the debilitation of what you have gone thru, you have perservered. It isn't your fault that the medical system has failed you--you have not done anything wrong. I hate that you think it could be something you are doing that is making them not take you seriously. The problem is with them, not you. I also applaud your ingenuity. That tube inserted in the mandibular device is ingenious.

Two points: make sure two things are clearly stated. First that your condo, when this all began, had a mold issue. Second, make sure it is very clear that you state at the beginning how you are feeling now, then show the progression. I think it is critical that they know (because you should be handing this to every doctor you see from now on) that you are feeling strangled and suffocated during the day.

And what about these lipomas? Are these growing and putting pressure on the airway? My mom once developed lipomas all over her arms after working for a couple of years in a bomb factoy in rural Illinois. Seriously this was cold war era. They grew incredibly fast and were large lumps up and down her arms that caused pain. Once they were removed (and she changed jobs) they never recurred. Perhaps these are some sort of immune response to the foreign organisms in your airway. My mother has a lot of allergies that came on suddenly, just like you describe.

Your original environment may be to blame. If money is an issue, you may look into getting a VERY GOOD attorney to sue the owner/builder of your condo for your long term health problems if you can ever get any kind of concrete evidence. All your stuff in storage should probably be disposed of--anything soft or made of fabric will be full of spores. The clothes can be washed and sanitized, but not your sofa and such things. These things, if they are still with you, are a constant source, potentially, of reinfection. You might want to have someone go to the storage unit and have them tested and if possible, get into your old condo and have it re-tested to see what the levels there are now. Unless they replaced all the drywall and studs in the affected area (unlikely!) there is likely still above normal spores in that condo and the current occupant's health could be at risk.

I'm not a medical professional. I just have a BA in biology and a keen interest in Medicine and the human body and our world in general.

I hope this helps you. I wish you all my best. Having never met you, I still feel a connection. You are obviously intelligent and articulate and deserving of better care than you have received. I think from here on things will get better for you. You are in my thoughts and prayers.

Jen

James,

I have just finished reviewing and re-reviewing your case as you lined it out.

I would concur with what Jen has said. The only other point that is key, is that you need STRONG PROBIOTIC enhancement. All the different drugs you've been taking has not only depressed your immune system, and allowed the proliferation of fungal and yeast agents - (IMO).

There are plenty of "natural" agents that can help you with systemic fungal infections, I am betting that your digestive system has a Candida overgrowth as well that is pouring toxins into your bloodstream.

Caprilic Acid, Garlic, and other natural agents/remedies can help you eliminate the Thrush (if it's there, most likely it's everywhere in your digestive tract). If you'd like I can give you more info via PM.

boynedoc wrote:The only other point that is key, is that you need STRONG PROBIOTIC enhancement.

I didn't mentioned any of the natural substances I took in the paper but I took probiotics everyday after the thrush broke out for about 6 months. It didn't seem to help at all. I also tried two naturopathic yeast kits: Yeast Busters and Threelac (http://www.candidasupport.org/)

boynedoc wrote: Caprilic Acid, Garlic, and other natural agents/remedies can help you eliminate the Thrush (if it's there, most likely it's everywhere in your digestive tract).

I have gone to two different 'natural' doctors and took all kinds of stuff. Grapeseed extract, oil or oregano, et./ When I was on the strong oral antifungals I also went on a Candida diet for over 3 months. I have spent hundreds of dollars on natural products and I don't believe they are powerful enough.

I am done with guesses of what this is. It seem most likely that it is fungal but I want someone to actually test it, find out, and the treat it with the most powerful stuff available until its fixed.

Well, James ... I had a 2 and 1/2 year chronic sinus problem. When it got so bad I woke up choking, unable to breathe, gagged and heaved up pure stomach bile I asked to see an ENT. Corticosteroid injection in the nasal cavity #1 cleared it up like a miracle almost instantly before I ever left the office, followed by 7 or 10 days of oral antibiotic.

But the sinus problem returned. The second corticosteroid injection and round of antibiotics cleared it up but not as dramatically or fast.

And it came back. The third corticosteroid injection was a waste and did NOTHING the 7-10 days of antibiotic cleared it up.

BUT it came back. My family doctor's NP (nurse practitioner) suggested a full 30 day regimen of antibiotic. THAT worked and NO RETURN!

Consideration of a long term regimen of an anti-fungal is really worth considering if you can convince some doctor to oblige, as does TOPICAL treatment w/an anti-fungal. In addition, I wonder if one could gargle an anti-fungal?

Excellent info, and I agree 100% - with that missing piece of the puzzle, I think you are definitely headed in the right direction. I am hoping for the best possible outcome for you.

Jen,

Thank you for putting into words almost all of MY thoughts!

I wish I had the brain power to put all that into words, like you have done so well. I agree with you, wholeheartedly, especially about the yeast connection.

I had a friend who ended up in the hospital from a proven hidden mold problem in her apt. She had lung problems to begin with, but this put her over the edge.

It also makes you think about how "chemical-free and fungus/bacteria-free" our homes need to be, to keep from blasting all that stuff in our lungs via CPAP.

Hope you're having a better day today, James, and on your way to getting well.

Best regards,
Gail

One other thought just popped into my head after I posted. AFTER you get this handled, it is critically important that you then aggressively work to re-establish the normal bacterial homeostatic environment internally. This is help stave off any potential re-occurance of this obviously very nasty invasion (whatever the etiology).

Not sure if it was clear from my paper but I have been taking antifungals non stop since July 2007.

July 6 - Nov, 2007 Amphotericin B nasal spray
Aug 9, 2007 Nystatin (2 bottles)
Aug 27, 2007 Itraconazole capsules 2 weeks
Sept 21-Nov 30, 2007 Itraconazole capsules
Nov 30-Jan 2008 Ketoconazole nasal spray

The Amphotericin B gave me a bit of improvment after about a month but then seemed to plateau. The Itraconazole reduced the post nasal drip after about 2 weeks and then plateau. The Itraconazole was hard to tollerate as it made me feel very ill.

Slinky wrote:In addition, I wonder if one could gargle an anti-fungal?

I have been using Betadine as a antifugal mouth wash. One has to wonder how long my liver can handle all these antifungals...

Yes, it was clear that you had been on multiple anti-fungals at various times. I did NOT pick up that they were non-stop, one right after the other w/o a break. (And I grumble about doctors who don't read a report thoroughy - tsk, tsk).

That was good advice, to go back thru your report of events and take out your feelings and emotions and leave in just the bare facts and pictures, charts.

Add your frustrations, emotions, etc. at the end, the doctor can read or not as he chooses - as long as he gets the events, facts and data up front.

Slinky wrote:That was good advice, to go back thru your report of events and take out your feelings and emotions and leave in just the bare facts and pictures, charts.

Yeah I agree. Unfortunately I have already sent the document yesterday to the doctor as he asked for it ahead of time to read. I hate writing so it was a big deal just getting that much done (there is a reason I went into science rather than arts . I knew it wasn't very well organized but I was stressed and needed to get it done at this point.

The before and after photos are striking and left me with a couple questions;
How much steroid have you been given?
Are the changes soft tissue or has the underlying bone structure changed?
Have there been any changes in your hands or feet, like increased glove or shoe size?
How about your jaw?
I can't imagine anything like a pituitary or adrenal tumor being missed with the MRI's you've had and and docs you've seen but if they were not looking perhaps something could get missed.
And again a long shot, but if they have only done routine cultures, that isn't adequate. Make sure you have had cultures specifically for mold/fungi. They take a long time to culture-a month or longer. So if they had the culture results in a week or two-question the results.
I'll second the advice to whittle down your history to signs (things other people can see) and symptoms (things like nausea that you feel). Mental symptoms like moodiness, irritability, depression, memory or cognitive changes should be included. Do a one page summary. Doctors have short attention spans-would you believe one, large-print, uncrowded page. A time line with signs and symptoms and any tests done is good. In back of the summary include any printed reports of tests you have had in reverse chronological order. Then your detailed history.