PDA

View Full Version : Could MRSA be responsible for AAV?



mrtmeo
09-30-2014, 12:14 PM
There seems to be a link between MRSA and ANCA Associated Vasculitis.
Microscopic polyangiitis triggered by recur... [Int Urol Nephrol. 2010] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/19795220)

mrtmeo
10-06-2014, 07:21 PM
Found this interesting perspective on the pathology of GPA and MPA
ANCA vasculitis: to lump or split? (http://rheumatology.oxfordjournals.org/content/51/12/2115.long)

Wegetarian
10-08-2014, 08:08 AM
I don't think its responsible per se, but from what I heard of it could trigger a re-lapse. I had Staph. Aureus in my nose when I got dx'd. I thought they took care of it, but they checked if I had it when I was in the hospital and the result came back positive. They wanted to check it out due to the reason that it could trigger wegs. At least that is my understanding. I don't think all weg's have been tested positive for Staph. Auresus though, so its not like it would be the cause of it.

mrtmeo
10-08-2014, 09:04 AM
My mom had MRSA colonized in her nares.
I did 100:1 ratio of distilled water to 5% Lugol's iodine with baking soda in a neti pot for 3 days and she was negative for MRSA.
Her WBC dropped from 12,000 down to 6,000.

mrtmeo
01-29-2015, 07:01 AM
There sure seems to be a big correlation between weg's and mrsa.
Effectiveness of Rituximab in Severe Wegener?s Granulomatosis: Report of Two Cases and Review of the Literature

http://www.ncbi.nlm.nih.gov/pubmed/24827750 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705845/)

annekat
01-29-2015, 05:18 PM
I don't have time to read the links right now but know there has been discussion of this on here, and I specifically remember talk of colonization of s. aureus in the nasal cavity/sinuses and it triggering relapses. You might try a search of the archives on MRSA, s. aureus, and also Bactrim, which was mentioned as being effective against these bacteria as well as the ones that cause pneumonia in immunosuppressed people. I think the implication was that many people are carriers of colonized MRSA (or s. aureus, sort of the same thing?) without knowing it, and Bactrim may extend remission by fighting off this bug so it doesn't trigger flares. May be a simplistic explanation, all that I'm capable of right now, and I may be remembering details wrong. Others know more and can talk about it better.

mrtmeo
01-30-2015, 03:10 AM
I don't have time to read the links right now but know there has been discussion of this on here, and I specifically remember talk of colonization of s. aureus in the nasal cavity/sinuses and it triggering relapses. You might try a search of the archives on MRSA, s. aureus, and also Bactrim, which was mentioned as being effective against these bacteria as well as the ones that cause pneumonia in immunosuppressed people. I think the implication was that many people are carriers of colonized MRSA (or s. aureus, sort of the same thing?) without knowing it, and Bactrim may extend remission by fighting off this bug so it doesn't trigger flares. May be a simplistic explanation, all that I'm capable of right now, and I may be remembering details wrong. Others know more and can talk about it better.

I think you are right about the bactrim helping, but most antibiotics eventually, become ineffective due to mrsa becoming resistant.
MRSA doesn't become resistant to iodine, but iodine can be tricky to use.
They have used super high dose potassium iodide to successfully treat vasculitis skin lesions.
However, Alysia says she had bad sores from mrsa way before she got dx'd with weg's and the lesions went away after a round of rtx.
This sure sounds interesting as for hope for fighting weg flares with rtx.

me2
01-30-2015, 03:50 AM
Using iodine can be tricky. Do you know of a good source of info on this now that I have a bottle of the "good stuff"?

The role of infection is an interesting subject. Here is an article I just read about something else that may have so
relevant implications: True cause of heart attacks shocking to most cardiologists | Natural Health 365 (http://www.naturalhealth365.com/heart-attacks-coronary-artherosclerosis-1298.html)

mrtmeo
01-30-2015, 04:04 AM
Using iodine can be tricky. Do you know of a good source of info on this now that I have a bottle of the "good stuff"?

The role of infection is an interesting subject. Here is an article I just read about something else that may have so
relevant implications: True cause of heart attacks shocking to most cardiologists | Natural Health 365 (http://www.naturalhealth365.com/heart-attacks-coronary-artherosclerosis-1298.html)

Hi me2,

If you want stop the colonizing of mrsa in the nares, this is what worked for my mom.
2 cups distilled water and 1 tsp of Lugol's 5% solution.
Mix together and use in a neti pot with 1/8 tsp baking soda to keep it from stinging.
Flush the sinuses 1-2 times per day for a week.
Bactericidal activity of antiseptics against methicillin-resistant Staphylococcus aureus. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC271835/)


Here is the protocol for supplementing with iodine.
Iodine Therapy Guidelines (http://www.breastcancerchoices.org/iprotocol.html)

For those that want to supplement iodine, it maybe best to follow an iodine friendly dr that can monitor for thyroid issues.
The protocol takes into account the necessary co supplements that help with bromism (acne from bromides in breads, cereals, pastas, etc), helps sodium iodide symporter defects and peroxidase which can come from thyroid antibodies.
Vitamin C helps the symporters
Selenomethionine stops the thryoid peroxidase
Livedo vasculitis successfully treated with iodide
http://www.ncbi.nlm.nih.gov/pubmed/12634944
Potassium iodide in the treatment of erythema nodosum and nodular vasculitis.
http://www.ncbi.nlm.nih.gov/pubmed/7458376

Post UPDATE:
Found this study
Wegener's granulomatosis successfully treated with prednisolone and potassium iodide.
http://www.ncbi.nlm.nih.gov/pubmed/7962978

One more thing in reference to your article, Dr Sydney Bush, opthamologist who can determine heart disease by looking in the eye and uses vitamin C to stop it.
http://www.vitamincfoundation.org/bush/
http://itsrainmakingtime.com/dr-sydney-bush-suppression-vitamin-c-science/

me2
01-30-2015, 10:55 PM
I have to be careful what I mention around here- I can end up with a lot of home work. lol
Thanks for all the good info. It'll take me a bit to get through it , but I like it.

I had no idea about the effectiveness of iodine for staph. It is stunning really. I guess I shouldn't be surprised because I was aware that it is still widely used even though its a pretty old 'solution' - no pun intended.

I was in a hospital in Beijing one time and had accidentally wandered into their operating theater. The conditions at this hospital were quite primitive and rudimentary. (long story) There was even a rat trap in the corner of one of the operating rooms. My companion and I happened to come upon the door way to a room that had three people in 'haze-mat' gear using a strong iodine solution to scrub down a doorway.

I thought "uh oh , what the hell went so wrong here they are destroying that doorway using iodine? - and more important ...
WHAT AM I DOING HERE ?????? It scared me a bit knowing some really bad bug was on the loose and I was just wandering around ( I was looking for particular doctor and my 'guide' had gotten us there)

MikeG-2012
01-31-2015, 12:50 AM
Hi me2,

If you want stop the colonizing of mrsa in the nares, this is what worked for my mom.
2 cups distilled water and 1 tsp of Lugol's 5% solution.
Mix together and use in a neti pot with 1/8 tsp baking soda to keep it from stinging.
Flush the sinuses 1-2 times per day for a week.
Bactericidal activity of antiseptics against methicillin-resistant Staphylococcus aureus. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC271835/)


Thanks for this info, I am going to run it by my ENT. I've had resistant staph in my sinuses for as long as I've had this disease. I'd like to kill it of--permanently!!

mrtmeo
01-31-2015, 03:25 AM
Thanks for this info, I am going to run it by my ENT. I've had resistant staph in my sinuses for as long as I've had this disease. I'd like to kill it of--permanently!!

Hi Mike,
After my mom did the iodine rinses, she tested negative for colonized mrsa at 2 different tests as required to release her from colonized mrsa designation. However, she has not been tested again since 2013, so she could have picked it up again. I am going to ask her dr to do a swab test again.

If you can remember, please update what you find out.

me2
01-31-2015, 03:27 AM
Ask your doc about using colloidal silver. I have looked into this a little. It seems to me I can find good info on silver working in direct contact but I'm still sketchy about drinking the stuff. I'm not saying it doesn't work - I just don't know.
I do know that regular medicine uses it topically for wound dressings- so why not as a nasal rinse for nose bugs?
That is essentially a topical use.
With all the things I have tried in 37 years I should put a picture of guinea pig on my medical insurance card.

mrtmeo
01-31-2015, 03:45 AM
Ask your doc about using colloidal silver. I have looked into this a little. It seems to me I can find good info on silver working in direct contact but I'm still sketchy about drinking the stuff. I'm not saying it doesn't work - I just don't know.
I do know that regular medicine uses it topically for wound dressings- so why not as a nasal rinse for nose bugs?
That is essentially a topical use.
With all the things I have tried in 37 years I should put a picture of guinea pig on my medical insurance card.

Hi me2,
I and my mom drank colloidal silver with no problems and in fact, I had her drink an oz when she was taking fluoroquinolone antibiotic because these antibiotics colonize mrsa. However, drinking it and nasal rinsing with pure cs, did not stop the mrsa colonization.
It works well for mrsa skin lesions and heals them up quickly because I have a friends that I had use it and it worked very well for that.
It just doesn't get rid of it systemically.
If someone has mrsa lesions, they have it systemically.

me2
01-31-2015, 03:54 AM
It works well for mrsa skin lesions and heals them up quickly because I have a friends that I had use it and it worked very well for that.
It just doesn't get rid of it systemically.
If someone has mrsa lesions, they have it systemically.[/QUOTE]


I'm not quite following this. It sounds like you are saying "it works well for mrsa skin lesions" but also saying "If someone has mrsa lesions , they have it systemically and... it doesn't get rid of it systemically"

Does not compute - LOL (thinking Star Trek episode here)
It also makes me wonder why topical iodine would work and topical silver would not.
As some of our folks here would say , g'day. I'm off to work..

mrtmeo
01-31-2015, 04:03 AM
It works well for mrsa skin lesions and heals them up quickly because I have a friends that I had use it and it worked very well for that.
It just doesn't get rid of it systemically.
If someone has mrsa lesions, they have it systemically.

I'm not quite following this. It sounds like you are saying "it works well for mrsa skin lesions" but also saying "If someone has mrsa lesions , they have it systemically and... it doesn't get rid of it systemically"

Does not compute - LOL (thinking Star Trek episode here)
It also makes me wonder why topical iodine would work and topical silver would not.
As some of our folks here would say , g'day. I'm off to work..

Hi me2,
The skin is our largest organ and if disease is expressing on the skin, the disease IS systemic.
Colloidal Silver cannot rid the body of mrsa, but it does heal up the skin lesions.
My friend had mrsa skin lesions and her niece, they both almost died from the antibiotics but after using the colloidal silver, the lesions healed up. Months later, they got the lesions again because they had mrsa systemically and it will come back when ever the immune system becomes too low.

MRSA is pathogen that likes to live in the nose because it is cooler.
Using the iodine kills it off from there, but whether it kills all off systemically, I won't know until I get my mom tested again.
According to the medical system's testing for mrsa, they test the nose and if you are negative for 2 tests, you are considered free of mrsa.
Hope this makes sense.

One thing I almost forgot.
When my mom was pos for mrsa, her wbc count was always around 12,000.
After the mrsa tests negative, her wbc count went down to 6,000 for the first time in many years.

me2
01-31-2015, 11:12 PM
Wow, very interesting mrtmeo. That is so great that your mom's wbc went down so dramatically. I hope she continues to enjoy some good numbers.
Thanks too for the explanation. It makes sense now. It also fits with my experience with my doctors. When I had sinus surgery they found staph. Not surprising for a WG patient and especially one with really bad structures that could not clear themselves. I was very glad it was not mrsa.
I am going to experiment some with the Lugols that I got .
I have considered getting a colloidal silver generator. The liquids are very expensive. I like using natural things, and also things that the buggies cannot develop resistance to.
And if that doesn't work I'm certainly not against anti-biotics - although I dislike taking them a LOT. They mess with my body.
Thanks again for the info

Wegetarian
02-01-2015, 02:07 AM
Are there some reputable sources that say colloidal silver would be useful? Hadn't heard about it before, and by googling just looked at this quackwatch page Colloidal Silver: Risk Without Benefit (http://www.quackwatch.com/01QuackeryRelatedTopics/PhonyAds/silverad.html)

If you would like to do it at home, shouldn't it be fairly easy to just use electricity to get the silver into water? Based on that quack watch page some of the people who got argyria created the solution themselves, so probably fairly easy to do.

mrtmeo
02-01-2015, 04:29 AM
Wow, very interesting mrtmeo. That is so great that your mom's wbc went down so dramatically. I hope she continues to enjoy some good numbers.
Thanks too for the explanation. It makes sense now. It also fits with my experience with my doctors. When I had sinus surgery they found staph. Not surprising for a WG patient and especially one with really bad structures that could not clear themselves. I was very glad it was not mrsa.
I am going to experiment some with the Lugols that I got .
I have considered getting a colloidal silver generator. The liquids are very expensive. I like using natural things, and also things that the buggies cannot develop resistance to.
And if that doesn't work I'm certainly not against anti-biotics - although I dislike taking them a LOT. They mess with my body.
Thanks again for the info
Hi me2,
I believe staph becomes mrsa, so any staph infection is dangerous.

I have heard of some breaking open a pure probiotic capsule and putting that in their neti pot replacing the natural flora in their sinuses that have been killed off by antibiotics.

Let us know how it goes with the iodine or what natural things you find that work.

mrtmeo
02-01-2015, 04:38 AM
Are there some reputable sources that say colloidal silver would be useful? Hadn't heard about it before, and by googling just looked at this quackwatch page Colloidal Silver: Risk Without Benefit (http://www.quackwatch.com/01QuackeryRelatedTopics/PhonyAds/silverad.html)

If you would like to do it at home, shouldn't it be fairly easy to just use electricity to get the silver into water? Based on that quack watch page some of the people who got argyria created the solution themselves, so probably fairly easy to do.

Hi Weg,
With homemade colloidal silver (cs), the particle size is way too big and you have to be careful to use only distilled water.
People that use tap water and or add salt to the solution when making homemade cs, can end up with argyria (blue man syndrome).
True colloidal silver requires equipment in the $200,000 range.

Here is some research showing the effectiveness of cs on pathogens.
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/4599-colloidal-silver.html#post94042

me2
02-01-2015, 05:07 AM
I know one reputable source that says colloidal silver would be useful- mrtmeo.
We mostly talk about conventional medicine here. And for good reason I think. Some of us here have long and extensive history with alternative medicine and know that there are few applications of it that are relevant to the treatment of a WG patient.
The other thing is that alternative medicine is by nature a massive mine field of quackery. The problem is that among the mines are pockets of gold. So, some of us end up wandering out into the mine field...

Quackwatch looks like a useful site but are they some kind of final authority to destroy quackery? A cursory look suggests they are not to me.

Of acupuncture they have some hit pieces but do not do a good job of taking a look at it- in my opinion.
They also attack chiropractic.

I have a long and deep experience of my own with acupuncture and it is not quackery. Neither is chiropractic and Quackwatch does a poor job of looking at that.

Is there quackery within these fields? Most certainly. Why does Quackwatch not have more pieces on quackery in conventional medicine? Trust me, it runs quite rampant there as well. Has Quackwatch done any work on quackery in conventional treatment of cancer? I think they could find large amounts of quackery there and really good treatments in alternative medicine that they are currently labeling quackery. Quackwatch targets alternative medicine and not quackery in general. Why?


I am not saying there is not useful information on Quackwatch because I think there is. But as in all my use of conventional medicine and of alternative medicine the onus falls on me to determine what is useable and what is not in my best interest.

In just a quick search I found that Quackwatch makes fun of Edgar Cayce's claim about how the physician of the future will be able to diagnose from one drop of blood : Edgar Cayce, America's most prolific psychic, said, 'The physician of the future, from one drop of blood, will tell everything.' Acupuncture has been using the hologram in the ear. Reflexologists have been using the foot and palm. Palmistry has been around for centuries. Why not the blood?

Quackwatch needs to update their information. It turns out that blood is kind of a useful diagnostic tool. They make is sound like quackery. Cayce was pointing this out in the 1930's --http://www.wired.com/2014/11/device-diagnoses-hundreds-diseases-using-single-drop-blood/

I think their coverage of that subject amounts to... quackery. It took me less than five minutes to find quackery on Quackwatch.

So , back to the question of finding reputable sources on colloidal silver. I feel your pain.
Of course, my example of mrtmeo is quite limited in usefulness for most of us. I gave myself a headache trying to find out the 'truth' about colloidal silver just recently. There is in fact wide spread quackery around this subject but I am not quite ready to throw out the baby with the colloidal silver water.
I like hearing direct stories from people that I know even somewhat like mrtmeo.

I could write a book about what chiropractic and acupuncture have done for me. My testimonial is of limited use to other people other than to possibly keep an open mind. I GUARANTEE you that my life would be filled with profound suffering if not for chiropractic. My University doctor says of chiropractic "There is no scientific basis for it, although they do seem to have some success at times"

Ok. He wanted to give me pain pills- which do not address the root cause of my back problem. My chiropractor has kept me pain free and PILL free for several decades. Who is the quack in this scenario?

Argyria is rare and its primary cause is not doing proper personal research before using silver. People abuse prescription meds to a massive degree - does quackwatch take a look at that? Doctors push these meds- does quackwatch take a look at that?

Just some food for thought. I love the discussion.

me2
02-01-2015, 05:16 AM
Hi me2,
I believe staph becomes mrsa, so any staph infection is dangerous.

I have heard of some breaking open a pure probiotic capsule and putting that in their neti pot replacing the natural flora in their sinuses that have been killed off by antibiotics.

Let us know how it goes with the iodine or what natural things you find that work.

Interesting idea on the pro-biotics for the sinus. Good bug / bad bug gut science is still learning a lot. I remember when it was laughed at and vilified. The risk is almost non-existent compared to the gain. I like those odds.

I will give a report when I try the iodine.

mrtmeo
02-01-2015, 05:49 AM
Interesting idea on the pro-biotics for the sinus. Good bug / bad bug gut science is still learning a lot. I remember when it was laughed at and vilified. The risk is almost non-existent compared to the gain. I like those odds.

I will give a report when I try the iodine.

How about the story of ignaz semmelweis?
He was attacked and then murdered because of his demand that all doctors wash their hands which he proved to dramatically, reduce sepsis at childbirth.
The Doctor Who Championed Hand-Washing And Briefly Saved Lives : Shots - Health News : NPR (http://www.npr.org/blogs/health/2015/01/12/375663920/the-doctor-who-championed-hand-washing-and-saved-women-s-lives)

me2
02-01-2015, 06:03 AM
Wow, fascinating story about semmelweis. Hand washing is still the biggest single breakthrough in medical history.
I'm sorry he lost his job and got beaten up for it. Thank you Semmelweis- where ever you are...

mrtmeo
02-01-2015, 06:18 AM
BTW, me2,
Theranos has the technology to do 30 blood tests from one drop of blood and is coming to a Walgreens near you soon.
https://www.theranos.com/our-centers

mrtmeo
02-02-2015, 02:13 PM
Some more interesting info on Staphylococcus aureus's connection with autoimmune diseases, including GPA.
Staph expresses a protein called staphylococcal enterotoxin B
Exposure To Staph Bacteria Could Lead To Lupus - Medical News Today (http://www.medicalnewstoday.com/articles/248902.php)

mrtmeo
02-05-2015, 05:07 AM
Here is a study using IVIG to erradicate MRSA, since so many strains are resistant to antibiotics.

Assessment of the efficacy of polyclonal intravenous immunoglobulin... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/23532569)

me2
02-05-2015, 02:42 PM
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.

me2
02-05-2015, 02:49 PM
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.

annekat
02-05-2015, 02:59 PM
My thoughts are that I'd be glad to try iodine in my sinus rinse, just on the chance that there is some staph lurking in my nasal cavity that needs to be zapped. Since my sinus pockets are gone due to erosion, and the remaining tissues are well healed, miraculously enough, I have very few issues in there and have been told by the ENT that I won't be subject to infections. But there is still mucus collecting in there, albeit a lot less than before, and I don't see why some insidious bacteria wouldn't collect as well. I'll have to look back earlier in the thread to see the specific brand of iodine that was recommended. Apparently, just any old iodine would not be such a good idea....

me2
02-05-2015, 03:11 PM
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
02-05-2015, 03:22 PM
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
02-05-2015, 03:35 PM
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
02-05-2015, 04:22 PM
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 (http://www.earthclinic.com/cures/sinus_infection.html)

--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/549861-iodine-nose-infections/

annekat
02-05-2015, 05:33 PM
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
02-05-2015, 05:42 PM
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
02-05-2015, 06:01 PM
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
02-06-2015, 04:24 AM
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
02-06-2015, 04:30 AM
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
02-06-2015, 04:31 AM
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.

mrtmeo
02-06-2015, 04:40 AM
My thoughts are that I'd be glad to try iodine in my sinus rinse, just on the chance that there is some staph lurking in my nasal cavity that needs to be zapped. Since my sinus pockets are gone due to erosion, and the remaining tissues are well healed, miraculously enough, I have very few issues in there and have been told by the ENT that I won't be subject to infections. But there is still mucus collecting in there, albeit a lot less than before, and I don't see why some insidious bacteria wouldn't collect as well. I'll have to look back earlier in the thread to see the specific brand of iodine that was recommended. Apparently, just any old iodine would not be such a good idea....

Lugol's 5% solution can made up by a pharmacist or ordered from jcrows.com
J.CROW'S Lugol's Solution 5%, 1oz., Value Price Includes Shipping (http://www.jcrowsmarketplace.com/1ozlugolssolution5valuepriceincludesshipping.aspx)

When I had a pharmacist make some up, it was the same price as jcrows.

I am glad that your sinuses doing so well and pray they always do well.

mrtmeo
02-06-2015, 06:12 AM
Iodine is an essential nutrient, meaning that if we don't get it from our environment, we will not survive.
Here is an informative video of Dr Jorge Flechas discussing iodine needs in the body for cancer and cystic diseases.
https://www.youtube.com/watch?v=EoMfg76gAUo

Povidone iodine is usually in a stronger concentration, such as 10%.
I prefer Lugol's because it has what the body really needs which is iodine and iodide.
There is 2.5 mg iodine, 3.75 mg potassium iodide in one drop.
All tissues of the body require one and/or the other and this is why French Dr Lugol created this combo.

Iodine/iodide body preferences:
Thyroid needs 3% prefers iodide
Lungs prefer iodide
Skin needs 20% and prefers iodide
Salivary Glands prefer iodide
Muscles and fat needs 70% prefers both
Breast tissue needs 3-5 mg / day minimum and prefers iodine
Prostate prefers iodine
Stomach prefers iodine
Entire body needs 1500 mg - 2gm for total body saturation over time.

Note: anyone wanting to try iodine should speak with their physician before trying it.

drz
02-06-2015, 11:37 AM
I read about people using hydrogen peroxide for chronic infections with good results and my pharmacist recommenced I try it since he said it would be safer, cheaper and easier to use than iodine. I have been adding it in small amounts along with baby shampoo and Alkolol too at times. I still get blood and blood clots on regular basis but less signs of infected gunk and think my sinus infections are largely gone after weeks of frequent rinsing.

mrtmeo
02-06-2015, 12:06 PM
I read about people using hydrogen peroxide for chronic infections with good results and my pharmacist recommenced I try it since he said it would be safer, cheaper and easier to use than iodine. I have been adding it in small amounts along with baby shampoo and Alkolol too at times. I still get blood and blood clots on regular basis but less signs of infected gunk and think my sinus infections are largely gone after weeks of frequent rinsing.

Hi drz,
Have you been tested for staph?

mrtmeo
02-06-2015, 01:26 PM
Here is a study showing iodine effective against quite a few common viruses, such as adeno-, mumps, rota-, polio- (types 1 and 3), coxsackie-, rhino-, herpes simplex, rubella, measles, influenza and human immunodeficiency viruses.
Inactivation of Human Viruses by Povidone-Iodine in Comparison with Other Antiseptics - Abstract - Dermatology 1997, Vol. 195, Suppl. 2 - Karger Publishers (http://www.karger.com/Article/Abstract/246027)

annekat
02-06-2015, 02:45 PM
I read about people using hydrogen peroxide for chronic infections with good results and my pharmacist recommenced I try it since he said it would be safer, cheaper and easier to use than iodine. I have been adding it in small amounts along with baby shampoo and Alkolol too at times. I still get blood and blood clots on regular basis but less signs of infected gunk and think my sinus infections are largely gone after weeks of frequent rinsing. I had wondered about hydrogen peroxide, drz. Another one to ask an ENT about, I guess, though I doubt most of them would be very receptive... I do use it in my ears, but haven't really asked about that, either. I do like Alkalol a lot, not that it would kill staph or anything, but it is just a nice refreshing way to rinse and does help loosen up the mucus. And when I tried baby shampoo, it certainly did help to get the mucus moving.

mrtmeo
02-23-2015, 05:39 AM
Just an FYI:

I was reading some iodine uses and how it has been used in the past by Dr Kunin and he mentions a product with iodine in it for nasal irrigation called Ponaris.

THE USE OF IODINE AS AN ANTISEPTIC:

Iodide disinfects water at a concentration of 8 ppm. If the water is heavily polluted, use a double dose. A single drop of saturated potassium iodide provides 30 mg of iodine and when added to a liter of water this is 30 mg per 1000 grams, ie. 30 ppm, more than enough to disinfect.

It is effective for sterilizing medical instruments. When diluted it is effective as a vaginal douche and a commercial product, Betadine douche, is available. Ponaris, a commercial nose drop is also available. This provides soothing relief for hay-fever, reducing irritation and crusting. It is also surprisingly effective in chronic sinus infections, even after antibiotics fail! The iodized oil seems to infiltrate into the tissues, thus inactivating both bacterial and fungal invaders. This product is the best treatment available to protect the nasal membranes of our astronauts against the drying effects of space travel.

The Healing Power of Potassium Iodide (SSKI) (http://www.drinkyourvitamins.com/the-healing-power-of-potassium-iodide-sski.html)

Again, consult your physician before using iodine.

me2
02-23-2015, 02:36 PM
I have Ponaris. Thanks for the info.
I will ask my ENT tomorrow about using these things.

Now I remember why I quit the Ponaris. I just tried it on my 'good' side and it burns like the devil. This may be a good thing but it doesn't feel like it. I'll see how it feels by tomorrow.

vdub
02-23-2015, 04:47 PM
Please don't do any of the things mentioned in this thread without consultation with your doctor. We'll close this thread.