posted
This is a new therapy that was discussed at ILADS 2013
Internal Mold Hypothesis: These fungi take up residence within biofilm in the sinuses. The gut and lungs (? Even vagina) are other potential sites for endongenous mold colonization. • These toxins poison mitochondria, create oxidative stress, alter cell membranes, etc. • Symptoms include chronic fatigue and brain fog. Also immune dysregulation and endocrine abnormalities. • Treatment: 1. Reduce exposure 2. Eliminate internal mold: aerosolized intranasal amphotericin in 5 and 10 mg ampoules if tolerated (nasal irritation, or even nosebleeds), intranasal itraconazole is a lot more expensive but better tolerated, ketoconazole, voriconazole, posiconazole via “NasaTouch” atomized mist $ 81. Oral treatment is only about 20% effective. Oral voriconazole costs $1800 a month but it does not get very high levels into the sinuses. 3. Dr. Brewer doses the Chelating PX in the AM and the Amphotericin B in the PM. Alternative is to do both of them BID, “back to back”. 4. Enhance output: binders like CSM or charcoal, FIR sauna, GSH 5. ASL Pharmacy(Aerosol Science Laboratories) is a sinus medication compounding pharmacy that works with a lot of ENT’s. Call them and ask for an order sheet: “Chelating PX” contains EDTA and Polysorban X (a surfactant in Johnson’s Baby Shampoo). 805-236-1679 or Tel: 866-552-7579 Fax: 866-442-7579 and website: http://www.aslrx.com/
The doc mentioned is a CFS doc not an LLMD. Anyway, I have been doing this treatment for about 5 weeks. I started herxing after about 10 days. The herxing was long and hard. It lasted about 3 weeks.
The treatment is tough, the Ampho B burns like crazy. Massive nasal irritation on top of herxing.
Today is the second day that the herxing has stopped. I actually was still herxing some yesterday so I don't know if I'm out of the woods or not.
I think this was part of the puzzle for me, I didn't have severe nasal congestion or anything like that, just stuffiness on one side. From what I understand, if a person has allergies that is one of the things that will get the colony started.
posted
TNT - it's just sinus, only 5% of the med gets into your blood stream.
Birdie - are you doing the ampoules? Are you mold susceptible? Meaning can you detox mold?
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posted
Birdie - also are you using a biofilm breaker? I'm using the one recommended in the protocol, I think it's necessary.
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posted
My Dr did say that clearing mold out of sinuses is a long process and can take up to a year.
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posted
Yes, it's all prescription. I'm using a misting machine to deliver it all. Maybe this way goes faster?
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posted
No, it's not a nebulizer. It's these ampoules that you pour into a chamber and it mists into your nose, one nostril at a time.
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WPinVA
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RC1 - This is fascinating. Thank you for sharing! I'm curious - what kind of doctor are you working with for this? Is this with your LLMD?
I saw an ENT a few years back but I highly doubt they would be up on this.
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posted
Yes, my LLMD. The protocol gets put together with the folks from ASL pharmacy (they do the compounding). They had a few suggestions for my doc to add in to it.
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TNT
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This definitely has potential! Very glad you posted this protocol and info.
I remember reading that one of the top LLMD's, either Dr. S in Maryland, or Dr. K in Washington, says that we reinfect ourselves with these pathogens in the gut because of what keeps draining from the sinuses. So, once the sinuses are free, you've won most of that reinfection battle and can work on the next step- the GI.
Also, oil pulling draws these bugs out and traps them in the oil and get spit out. But this probably takes a long time and gets a little tiring after a while. But I find it has benefits.
Seems like sudafed would help break down the biofilms, too?
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posted
I just spoke to the pharmacy last night. The herxing from this is rough, I'm cutting back to half a dose. Mind you, I was 90% give or take before I started this protocol.
The pharmacist was telling me how under diagnosed this is. Treatment can take up to six months or a little as one.
The Mayo did that study that said most all sinusitis is fungal. If you are mold susceptible this is a huge burden on your body if you are colonized.
I think this could be what is keeping a lot of us from getting symptom free.
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CD57
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Was your TGF beta 1 really high? I have no sinus or other symptoms but have the gene that can't detox mold and have not responded to treatment for bartonella very well. I also have low VIp and MSH. Did you look at these as well? I'm still unclear on how this can prevent treatment from working.
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dbpei
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Good information! Thanks for posting!
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posted
CD57 - yeah, all of my Dr. S tests aren't good. I have the bad genes too, not the "dreaded" but still bad.
I just had a little stuffiness on one side, it wasn't anything I would have sought attention for...
The first step would be to make sure you aren't living or working in mold, we did a big remediation a couple of years ago.
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posted
CD57- I should add that it doesn't prevent the other things from working. Just makes your toxin burden higher and will make treatment harder.
Also I believe that this is what can keep a person from reaching the symptom free stage.
The other thing is that I am hoping to gain from this treatment is to not be sensitive to mold. There are a bunch of places I can't go because they will make me sick.
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posted
I'm wondering, what kind of 'herx' type symptoms you're experiencing with this…..
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posted
The herx is pretty darn similar to a Lyme herx, exhausted, muscle pain, joint pain, bone pain, chills, sweats, stiff neck, headache, shortness of breath, jaw pain, tooth pain.
I've had really bad insomnia, haven't had more that 5 hours sleep a night in the last three weeks...this of course makes everything worse.
I've been struggling with my emotions too, I don't know if this is from the fungus dying or lack of sleep.
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posted
Soccermama all of the info is in my first post. All of the contact info is there.
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Carol in PA
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Chronic Sinus Problems? Blame Your Body Dec 20, 2013, by Paul Heltzel
Chronic sinusitis inflames the sinuses and nasal passages for as long as three months, and it's one of the most common chronic conditions in the United States.
Its cause is a mystery - making it hard to treat - but a new study suggests it could be the immune system acting too aggressively.
The study suggests an infection in the sinuses isn't caused by bacteria or fungi. Instead, researchers believe it's the immune system reacting to harmless microorganisms called commensals, that, in healthy people, cause no problems.
The immune system overreacts to the harmless microorganisms, causing inflammation.
Carol in PA
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Systemic enzymes reduce fibrin in the bloodstream, which also thins mucous in the sinuses and the lungs. The mucous drains easily when it is thinned, and sinus infections clear up.
A study showed that systemic enzymes cleared up sinus infections. If you want to read more, google for sinus serrapeptase.
Serrapeptase is over the counter, and has few problems with side effects.
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posted
Carol the thing is, I didn't have chronic sinusitis. I did have a little bit of stuffiness on one side.
The whole process is started by a test for mycotoxins in the urine. I didn't do the test because it's 800 bucks. If a person is living or working in a moldy environment of course some will show up. The ERMI on my house was a 36 now it's a 1.
Based on my history we thought ( my LLMD and I ) there is a very high probability that this is what was causing my remaining symptoms
Prior to the remediation in my house I was on Nasonex and Clarinex for 10 years. When we did the remediation I no longer needed those drugs. The sinusitis went away.
I'm not really talking about sinusitis here, I'm talking about a mold colony growing in the sinus and producing ongoing symptoms. Also the protocol I'm on to get rid of it.
I really feel that this could be the missing piece for some. I want all of my life back, not just 80 or 90 percent of it. I want to be symptom free.
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oxygenbabe
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Interesting. Although the azoles are all fungistatic not fungicidal, but I think amphotericin may be fungicidal.
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GretaM
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This is a great thread. Thanks for posting RC1.
I paid the 800 for the mycotoxin tests. the black mold toxin (triethecene? Spelling...sorry), came back 3 times the acceptable range.
Without damaging structure, how does one figure out where the mold is coming from? I can't see it or find any damp. Argh.
Thanks for posting the protocol. I really wish to do this. Sinuses are an issue for me also.
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posted
Greta the mycotoxin could be coming from your sinus! You could have a colony there.
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oxygenbabe
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I don't think the black mold grows inside your sinus. Aspergillus can grow in your body (some strains).
It's probably in the house in the wall cavities or behind wallpaper or panelling. Do an ERMI dust test. Google Surviving Mold by Ritchie Shoemaker.
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posted
Aspergillus is one of the most problematic molds, there are a few others that will also produce mycotoxins that can colonize in your sinus.
"Black mold" is the one that everyone is most concerned about but it's not the most common, Aspergillus is.
Greta I am not saying that you shouldn't do an ERMI on your house, you should. What I am saying is that a person could have been in a moldy environment many years ago and could have gotten colonized then...and still have that same colony.
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posted
And at the same time, do the anti-fungal DIET. You will make even more progress.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Carol in PA
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quote:Originally posted by RC1: Carol the thing is, I didn't have chronic sinusitis. I did have a little bit of stuffiness on one side.
Prior to the remediation in my house I was on Nasonex and Clarinex for 10 years. When we did the remediation I no longer needed those drugs. The sinusitis went away.
Okay, I see what you're saying. But the mold would not be able to colonize if the mucous was thin and drained well. Biofilm would not form to protect the mold spoors.
In any case, so many Lyme people have sinus problems due to having an excess of fibrin in the bloodstream, which is caused by a chronic systemic infection.
I had occasional mild sinus problems, but they went into high gear for several years when I began picking grapes in the autumn, in my 20's. The vineyard was on top of a rise and had good air drainage, but there were mold spoors.
I finally realized the connection and stopped helping with the harvest. My severe sinus infections cleared up, what a relief.
Now that I'm taking systemic enzymes daily, I have not had colds, sinus infections, bronchitis or pneumonia in years.
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posted
Carol, that is a good prevention method for sure. I believe I got colonized because of my allergies.
I think that allergy medicine is probably a necessity too, once I get rid of this colony...
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posted
Interesting to know. I am currently being treated for a nasal staph infection (MARCONS) with BEG spray (bactroban-EDTA-gentamicin). Didn't know that there could be mold too.
My LLMD did the nasal swab culture - I'll have to ask if it also revealed any mold issues or if the test was only specific to staph...
Thanks for the heads up!
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Also wanted to add that I am still treating it. After being at 90% for so long this is difficult to deal with...I am still herxing.
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GretaM
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That's a great link, RC1
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CD57
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My doc just ordered the Ampho B ampoules for me, he says they have seen this prevent people from adequately responding to treatment!
He did not RX an chelating agent. I will try to find that on my own. I hate half-&*&* protocols! Are there instructions on how to use the chelating agent up your nose?
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CD57
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BTW...I don't have sinusitis, just a little stuffiness also.....but an ENT looked in my nose last week and said that it was all swollen in there!
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CD57
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One more ? will this kill MARCONs, do we know?
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My LLND thinks I have mold issues, I do have sinusitis, have for moths and he wants me to take that 800 dollar test.
I have allergy shiners, itchy and burning eyes, pain and rumbling that moved from eyes and nose to front teeth and lips. My symptoms get worse with Diflucan and other abx as they spread around my face and jaw. This all started with a watery eye and then eyes got worse and worse, then sinuses. My eyes have swelling around them since April and the circle of swelling is discolored, like darkish. I also recently developed Photophobia.
I also have insomnia and facial twitching and right now mostly my bottom lip, like it's being torn away from the flesh and bone. My face rumbles so hard and twitches all night.
Does anyone think this sounds familiar? I do not have allergies and have been see by an allergist.
I have eliminated yeast as the culprit, so I am left with mold or parasites. I am on Bart drugs and this is making theis spread.
Thank you all. I am trying to help myself before my eyes and teeth get permanently distroyed.
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CD57
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Cattail, what bart meds on you on? I had that happen on my firt combo, Rif and doxy. What is face rumbling?
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Carol in PA
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Cattail, You have symptoms of low magnesium.
Photophobia - eyes sensitive to light Insomnia Muscle twitching
Look into systemic enzyme therapy for sinus problems. Just google ~Serrapeptase sinus~ for information about how reducing fibrin in the bloodstream will also reduce sinus problems by thinning mucous.
Dr. C., a prominent LLMD, found that 90% of his Lyme patients had hypercoagulation. This is due to excess fibrin in the bloodstream, caused by a chronic infection.
Because of this, it is common for Lyme patients to have chronic sinus problems.
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dbpei
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Another great link, RC1. Thank you!
Cattail, I am so sorry for what you are going through. I have some similarities in my lingering symptoms, but not as severe as you with less eye involvement.
I do have a feeling of the tissue being infected in my face, skull and behind eyes. It feels warm, tingly (as though like seltzer in there fizzing) and sometimes I have crawling insect sensations.
I feel as though this could be mycotoxins moving around in there and this feeling goes all the way to my ears, causing changes in my already horrible tinnitus. I also have intermittent dental and jaw pain.
I have lost hearing in one ear and am so afraid I will lose it in my other. I wish I could find a doctor who could help me to stop this in its tracks.
The skin in my face on left side is tingly and puffy and when I put pressure on it, it feels as though some type of fluid is being pushed into my mouth through my dental implant.
I know there is a cyst in the floor of my left sinus, which ENT says was benign. I am going for a second opinion in Feb.
When you say face rumbling, is it something similar to what I am describing? Or is it noise you hear in your head when you do things like turn your head or raise your eyebrows? (I have this as well).
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dbpei, the rumbling is the feeling your feet would get if riding on the subway. It is humming, only more bumpy if that makes any sense. It is not noise. When I wake in the morning, I hear clicking with my head while lying perfectly still. The tiny clicks are around the nose, mouth and jaw.
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dbpei
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I see, Cattail. Both must be frightening. The rumbling sounds a little bit like that internal trembling/shaking vibrations that many of us get. Pam Weintraub described it in her book, Cure Unknown.
It is likely caused by nerve damage from this disease, but it sure would be nice if we could all know for sure.
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posted
Yes, could be. It has migrating from around my eyes when they became swollen, then around my nose when sinuses got involved and now front teeth and lips when they started to hurt. My face feels like it's under attack it moves everytime I start a new med. So hard to figure out.
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posted
RC1, does Brewer start at the 5 mg ampules or the 10 mg ampules and is there a protocol of some sort for "ramping up"? And for length.. any indication as to when he might say treatment is complete (maybe RTL results staying in normal range?) or when he might start staggering treatment days?? Thanks so much for these threads and sharing this info!
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posted
Learning, Here is the latest about Brewers findings. From what he is saying here it looks as though it could be a chronic situation...I guess a maintence protocol might be in order.
posted
You might want to look into using Olive Leaf Extract for your problem. The best one is Seagate brand. See their website at www.seagateproducts.com
Btw - I am in no way affiliated with this product or company, just trying to help.
Read Dr. Morton Walker's book, "Olive Leaf Extract" which you might find in your local library or buy it used on Amazon for very little.
Here is a link for a very informative thread on Lymenet about OLE:
posted
Brewer has spent almost 2 years working on treatment. He started with oral medications with limited success. For the past 10 months or so he has tried a number of nasal treatments and has now settled on a rather simple protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Amphotericin B in the evening
The box says 5mg/3ml on the Amphoterecin B. It looks like all his patients get the same thing as my daughter that is doing it is half my size. I don't know the exact previous dosage but it was twice a day. Now he has settle at once per day. There is no ramping up. He has settled on this and has patients stay the course, but he will adjust it down if there are problems.
The end of treatment is an unknown. Most patients start to get better in the 2 week to 12 week range. Ochratoxin and aflatoxin can come down fairly quickly but tricothecene is more difficult. He has not gotten anyone get trocothecene down to zero but he is very close. He does not know whether maintenance treatment will be needed or what the exact length of treatment will be. He did say he thought the 3 to 6 month mark might be about the right time to retest.
quote:Originally posted by learning: RC1, does Brewer start at the 5 mg ampules or the 10 mg ampules and is there a protocol of some sort for "ramping up"? And for length.. any indication as to when he might say treatment is complete (maybe RTL results staying in normal range?) or when he might start staggering treatment days?? Thanks so much for these threads and sharing this info!
posted
Brewer had a number of patients try Olive Leaf Extract but it did not work very well. The problem is that the mold is encased in a biofilm which protects it from anything you take orally. I do agree that this is a good medicine generally.
quote:Originally posted by hopingandpraying: You might want to look into using Olive Leaf Extract for your problem. The best one is Seagate brand. See their website at www.seagateproducts.com
Btw - I am in no way affiliated with this product or company, just trying to help.
Read Dr. Morton Walker's book, "Olive Leaf Extract" which you might find in your local library or buy it used on Amazon for very little.
Here is a link for a very informative thread on Lymenet about OLE:
TerryK
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RC1 - Thanks for posting the article. My concern though is that the article states that mycotoxins are "killed" with the protocol. My understanding is that mycotoxins are a toxic metabolite of fungus and thus need to be removed because they cannot be killed (they are not alive).
Maybe I'm missing something but I see nothing in the protocol that removes the mycotoxins, only things that break up biofilm and kill fungus. If one has genetic difficulty removing mycotoxins they may herx badly and not be able to get rid of the toxins. For those who don't have the genetic issue it may take time to remove the toxins and until then they would be sick.
BTW- another place to look for mold is in bathroom fans. Our fans were installed improperly when the house was built and they were contaminating each other and thus the house. I don't know what the strain was because we didn't test it but it was black and nasty looking.
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posted
Terry, I hear what you are saying. The hypothesis is an internal mold colony that is producing mycotoxins.
There is some thought that due to these internal mycotoxins it is a overfilling cup situation. That people are detoxing the same way they always had prior, just now their bodies are at their max with what is being made in their sinus or elsewhere. Sinus being most common.
The overfilling cup theory goes against everything I had learned up to this point. But, my mind is open...I know there is something to this.
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TerryK
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RC1 - I have the genetic issue for mycotoxins, borrelia and spider bites and I can tell you that my experience with all 3 makes it clear that I have a problem getting rid of these specific toxins.
I recently had the MARCON + Fungal nasal treatment. I did cholestyramine during the treatment which I think is probably necessary for some ppl.
Just to clarify - the theory around the genetic issue is that some ppl do not make enough of the right antibodies to get rid of these toxins.
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posted
Terry- I have the same problems as you do. This is a new theory I'm talking about here...
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TerryK
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Thanks RC1 - got any links regarding the new theory? I just assumed this was part of the picture all along but I would be interested in reading about this specific theory if you have an author or any articles.
Terry
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dbpei
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I just started using a form of this protocol. I am using the nebulizer twice a day. Each time, I start out with mupirocin and this is followed by amphotericin B.
I cannot believe the stuff now coming out of my sinuses! I am praying that we are on to something that is going to help me to turn the corner.
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CD57
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dbpei,did you order a nebulizer (which one)or just go with the already nebulized preparations that you order from the pharmacy? Mine stopped working; the AmphoB got clogged up in the bottle and will no longer mist.
I have the crawling, selzer like sensations on my scalp as well.
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CD57
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dbpei,did you order a nebulizer (which one)or just go with the already nebulized preparations that you order from the pharmacy? Mine stopped working; the AmphoB got clogged up in the bottle and will no longer mist.
I have the crawling, selzer like sensations on my scalp as well.
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posted
dbpei,can you say more about what is coming out of your sinuses? Just wondering....
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dbpei
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I got the nasatouch nebulizer from Sinus Dynamics Pharmacy out in CA. My LLND ordered my prescription and the nebulizer came with it.
I have a lot of thick mucus that is coming out at different times during the day. Sometimes there are also some blood smeared clumps.
I never would have known that I had all this stuff in there. When I had my sinus cat scan done, I was given a dx of paranasal sinus inflammatory disease. I also had some polyps and a cyst directly above my titanium dental implant, but the ENT's thought everything was benign.
I do have some dental pain and jaw bone pain with some fullness in my ears but all are intermittent. Still having the crawling, seltzer like sensations in my scalp as well.
CD57, did you call the pharmacy and tell them what happened? I bet they would send you a replacement!
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canefan17
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Bump
My doctor just prescribed this. For people ultra sensitive to things... can they make tinier doses?
It says 5mg on the sheet I have.
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dbpei
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I would think that the doses could be reduced but they may not be as effective. I know they can make substitutions. There are various combinations of meds that can be used.
The pharmacist suggested using a saline solution in my sinuses with neti pot, prior to the atomizer tx. Not only does it help to soothe irritation from the amphotericin B, this actually makes it work better.
One of the pharmacists also said you could add just a small amount of the saline solution to the med in the atomizer as well. I have tried both but when you add the saline solution, I found it took too long to breathe in the meds through the atomizer.
I am still doing this treatment. I find it much less irritating now and I don't have anymore clumps of blood or heavy mucous coming out. I started to feel a little better in the last month, but took a few steps backward recently when titrating herbs to treat brucellosis too quickly .
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canefan17
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How long have you been doing it?
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dbpei
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I think it has been around 8 months.
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posted
Does anyone still come to this post? My 2 yr old son was exposed to mold as a baby. He then developed autism. However he got sick with mycoplasma at 2 yes old and for the last 6 months he has had nasal issues and lung issues. His ND figured out he has MARCoNS and mold in his nose. (Penicciliam) we sent off our ERMI test and should have results soon. His CBC keeps getting worse. Really high eosiniphils and lowering platelets. Did you see these same things with super high eosiniphils? His are so high.
We are going to try the BAG spray and the Amp B and she also wants him on the chlorestramine or whatever it's called. Is this going to be too much for my sweet baby? He is mom verbal and "autistic" but I honestly don't think he's autistic I think he is biotoxin sick. I also suspect congenital lyme.
Please tell me is this protocol too harsh? What else can we do to save my little bit from all this suffering?
Posts: 2 | From United States | Registered: Nov 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry to hear this! The BEG spray with Amp B is controversial. I did this for 3 months and have recently stopped. I will be retested for marcons in a couple of weeks.
There are a couple of different perspectives on the amphotericin B that you will probably want to review. Mold illness is a new science, just like chronic lyme. So much we have to learn.
Is there a nurse or doctor trained by Dr. Shoemaker in your area? He is probably the best doctor to guide you through this, but treatment is tough - meaning moving from moldy home and making sure you are not further exposed. Then there is the medical treatment that you do in steps while monitored closely.
Here is some reading for you that perhaps you have already done.
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Yes we are near dr. Klinghardt and I take him to one of his colleagues. She wants to do biocidin, cumanda, and biaxin to target the myco and lyme. Then she wants to do 3 mo of rotating antiparasitics ivermectin, and two others something with menzaboadozole or something like that and Then i can't remember the third. I mentioned to get his nose hurts him. His eyes are puffy with congestion. He can't sleep. He's up all the time from sinus pressure but she doesn't think it's a good idea to put him through the pain of BEG spray. But my son NEEDS relief And we need it now!I'm so exhausted and want to help him. I started him on rotating xlear spray and seagate olive leaf spray today. And I take him to a Himalayan salt mine room. But there has to be more I can do. Had anyone any advice? How about garlic? Had anyone here found a way to ease symptoms? He can't sleep has up every hour. I'm so tired
Posts: 2 | From United States | Registered: Nov 2015
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