Could MRSA be responsible for AAV?

[me2]

I ordered the iodine that mrtmeo recommended- Lugol's. I'm sure there are others that make the same thing but it was easy to order online and not terribly expensive. There was a good link there too with information on iodine and its different forms. I know that we don't want iodine that is in alchohol solution for our sinuses.

Hey, give it try Anne. We can start our own little research thread on iodine use. I think its an interesting idea and it sounds like you do too.

Another thing I like about iodine use for this is that it may help reduce antibiotic usage. I very much dislike antibiotics.
Another thing I like is that I read that buggies cannot develop resistance to iodine. That is a very big point too. Save the antibiotic use for other things.

[annekat]

Kirk, I'll be interested to hear what your ENT says about this when you mention it to him. I found out Lugol's is not a brand name but named after the first person who made that sort of solution, and there are quite a few brands that supply it in different concentrations. The 5% is the most expensive, and isn't exorbitant, but I'll need to wait until my cash flow is a little better. No urgency, since I and my nasal cavity are doing pretty well right now. I do like the idea that bugs don't get resistant to it and wonder why docs haven't caught on to this. Too much out of the realm of conventional medicine, I guess. That's why I want to hear what your ENT has to say. I wouldn't even ask mine.... I doubt the idea would even compute.

[me2]

Anne, the bad news is - I won't be seeing my ENT any time soon. Of course , the good news is - I won't be seeing my ENT anytime soon.

If I go too long with out seeing him I will email him about this subject. I could talk to my Rhuemy about this too , although its not exactly in his field. I will be seeing him again not too far from now as I have a Rituxan infusion I need to schedule for March.

I'm glad your sinuses are doing pretty good right now.

[me2]

Ok, I've done a little more research on using Iodine as a nasal rinse. I can see I would need to do a LOT more research before deciding on what form of iodine and how often to take it. There are several different iodines and a question in my mind about how much gets absorbed and is it safe to do on a regular basis. MORE research.

I found an interesting place with a bunch of good sinus info. Its a bit of a long read but some of the comments are really helpful. Cure a Sinus Infection with Natural Remedies

--And I found another good article. Definately need to talk to the doc about this idea. (and go back and read through the good info from mrtmeo)

http://www.livestrong.com/article/54...se-infections/

[annekat]

That's OK, Kirk, and I'm glad you have less reason to see your ENT these days. As I said, I really don't have any sinuses left, and there aren't pockets for stuff to collect in, so am not going to be subject to sinus infections. Which doesn't mean to me that nothing in there can ever get infected, but just that I won't have the ongoing issues that you and others have had. Seems like most of my ongoing sinus infections were before diagnosis. So the erosion must have started pretty early. I am very happy that the tissues have all healed nicely, and I have no pain or irritation in that area, and never really have.

As for the Lugol's iodine, I would not be too hesitant to try it, since Blake said it worked so well for his mom. But I would probably start with a smaller amount, to see how it went, then maybe increase it and try that for a few days, but maybe not on an ongoing basis, since I have few issues. More research on your part, or mine, would of course be a good idea.

I checked out and bookmarked the link you supplied above. I have tried goldenseal, a natural antibiotic listed there, in tincture form, a few drops in my sinus rinse. I liked it and felt it did some good. The site said to use the powdered herb, but the tincture was easy to work with and I don't worry about the small amount of alcohol in a few drops. I've used other herbal tinctures, too, can't remember all their names, but will peruse the site again and see if they are listed. I don't put just anything up my nose, but get advice from people who know more than I, or from sources that seem reputable, and think carefully first and am conservative when trying something. The site looks valuable because of all the feedback from various people, as you mentioned. These days, I'm really just using plain saline solution, and pretty much have been since diagnosis, except for a little Alkalol when I have it, or baby shampoo occasionally. The small amount of experimenting with tinctures was done mostly before I knew about Wegs and was on an endless rollercoaster of sinus infections and antibiotics, with a little pred thrown in. I was sick of it and motivated to try other things. Of course, I never told my ENT about it. But he himself was getting frustrated and had tried a liquid antibiotic, gentamicin, which I had to get at a compounding pharmacy, and he had me use it as a sinus rinse. It didn't do a whole lot, but it gave me the idea of adding things to my sinus rinses.

[me2]

I don't put just anything up my nose

See, this is just one of the advantages of getting older. hahaha Love the sinus subject

[annekat]

See, this is just one of the advantages of getting older. hahaha Love the sinus subject

Perhaps I should have said "I don't put just anything up my nose anymore". Not that I ever did, much.... though people might think otherwise if they got a good look at my nose. Drugs aside, my sister at age 4 put a broken off part of a plastic dinosaur up her nose and had to go to the ER to have it removed.

[mrtmeo]

I know when I had sinus surgery a few months ago I was really in a bind because my sinuses were structurally so bad and so scarred from decades of WG that they could not fight infection. I had infection so bad that continuous use of antibiotics was barely keeping it at bay.
I felt very lucky that my WG was finally under control enough that they could go in and fix the structures somewhat.

My sinuses have been the best they have been in many years.

My point in babbeling about this is that when they did the surgery they told me to stop antibiotics a few days before the surgery so they could get a good culture during the surgery. As luck would have it my sinuses were so bad that I could not stop antibiotics without tremendous pain. So the doc said it was ok to keep using them right up until surgery.

So after the surgery the culture came back as Staph. No big surprise there for a Weggie. But here is my question.

We know for a fact, from studies, that Staph can cause WG relapse. This is one reason why many people take Bactrim prophilactically.

I think that I had Staph living in there for a LONG time and I suspect that even if it did not cause outright relapse it probably aggravated my condition.

So, I promised a question, LOL, I wonder if in the future it should become common practice for Weggies with sinus involvement (which is almost all of us) to use Iodine rinse on some sort of schedule to NUKE the Staph buggies that are probably living in there?

I'm trying to think of a down side to this idea and I can't come up with one. I'd like to hear other peoples thoughts on this if they are so inclined.

I will definately pitch this idea to my wonderful ENT that did my surgery. He is really good and creative minded.
I know he would give this idea some serious thought before just dismissing it.

So, my preliminary report on using iodine- I like it. I am being very conservative and upping the concentration slowly.
Also, I am not using distilled water. I hope my ordinary good, clean, well water is not contraindicated.

Hi me2,
Today, drs are very afraid of iodine because if someone has a severe selenium deficiency and/or iodide symporter defect, iodine can flare cause thyroid issues.
When someone gets a skin rash like acne without a head when taking iodine, this is the bromides coming out of the skin.
They used to put iodine in bread and milk, but now, they use bromide in the breads, cereals and flours. They also, took it out of the milk.
If you can handle high iodine foods, you shouldn't have a problem with the iodine.

Also, iodine is out of the body within 48 hours, so it has a short life span.

As far as iodine solving the mrsa issue, I only have my mom's case right now.
Working up to the high concentration of iodine to distilled water is a great idea, especially for those who are sensitive.
Keep us updated with what you find using this.

[mrtmeo]

That is an interesting article about using IVIG for MRSA. I had IVIG many years ago as a last ditch treatment. I did not get dramatic results. Although, I am still here , so who knows?

I do remember researching IVIG before getting it and being surprised that to a great degree they don't understand how it works.

I see in the MRSA article that they are saying the same thing. Weird that it only worked for MRSA when used at the site of infection and they are not really sure why.

These are really good points and questions.
Perhaps, the immune system needs to be modulated in order to use ivig adequately?

[mrtmeo]

me2,
It would be best to use distilled water because you don't really know what minerals or bacteria that is in the well water.
Don't take a chance with pathogens even tho iodine kills most, because your sinuses are very close to your brain and effect your lungs.
You can buy distilled water at the store in gallon jugs.
Also, don't use it every day indefinitely.
I would use it for 3-5 days in a row and if the infection is gone, stop until another infection appears.
If the infection is not gone, something else is going on.