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» LymeNet Flash » Questions and Discussion » Medical Questions » Mold colony in sinus treatment (update) (Page 2)

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learning
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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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RC1
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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.

http://cfspatientadvocate.blogspot.com/2014/03/dr-joseph-brewer-and-mycotoxins-update.html

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hopingandpraying
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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:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=print_topic;f=3;t=030549

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Ifish
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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

These medications are provided by ASL Pharmacy http://www.aslrx.com/


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!


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Ifish
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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:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=print_topic;f=3;t=030549


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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.

This is an interesting article and has some suggestions that may be useful
http://www.drjohntafel.com/?page_id=617


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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RC1
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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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RC1
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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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RC1
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I have another thread going. There are a lot of links in it.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/127480

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MichaelTampa
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Could someone please PM me contact info for Dr. Brewer?

[ 12-09-2014, 09:54 PM: Message edited by: Lymetoo ]

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Ifish
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I've been posting on this pretty extensively on another forum and I've decided to quit posting on this one. Here is the link.

http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/

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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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dogmom2
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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 [Frown] .

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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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Jacobs mom
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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?

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dbpei
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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.

http://www.survivingmold.com/mold-symptoms/understanding-the-illness

https://www.survivingmold.com/legal-resources/dr.-shoemaker-essays/dr-joseph-brewer-nasal-fungi-anti-fungals-and-junk-science

http://www.gordonmedical.com/unravelling-complex-chronic-illness/junk-science-or-junk-blog/

Wish I could be of more help on this difficult decision. Good luck to you. [group hug]

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Jacobs mom
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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
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dbpei
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I just sent you a PM with info on some practitioners to help you with this.
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WPinVA
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Sorry if I missed something but why not try the BEG spray? I did it and it was great. It wasn't painful at all. A LOT of stuff came out - and while a little gross, it showed me it was working. I did it in combo with Xlear.

Also, has he been evaluated by an ENT? There may a something structural in his nose or sinuses that's impeding drainage. Like a deviated septum, swollen turbinates...

The neti pot never did much for me and I think it would be really hard to do with a small child. You have to lean over to get the angle just right or else it's not good.

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Catgirl
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Jacobs mom, anti parasitics actually do help with sinus issues/parasites. Has he started doing them yet? They helped me, but viruses every winter made it hell (marcons).

I think marcons is tough on people in the winter especially if a virus slips in. Some people herx on the BEG spray though, yet for others it is not bad. He is just two though, I'm sure you know what herxes are like for him. The BEG spray did burn my nose at first but for me it was livable. Not sure for a 2 year old though. Follow your gut/doc.

I agree with you on the biotoxin sickness. I believe that is what autism actually is: heavy metals, parasites, lyme and company. Hang in there!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Carol in PA
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quote:
Originally posted by Jacobs mom:

He can't sleep. He's up all the time from sinus pressure...

And I take him to a Himalayan salt mine room.

Look for salt inhaler at Amazon.com.
This is a tube of dry salt crystals.
You inhale air through the tube, which picks up salt ions and carries them deep into the lungs.
Just like a salt mine, but more convenient.

When you get one, show him how to breathe using his abdominal muscles.
You don't exhale through the tube, as the salt picks up moisture from your breath.


As for the sinus congestion, I noticed that when I used near infrared light on my face, any congestion in my sinuses cleared up.

I have a SOTA LightWorks, which uses LED's to give off light with either a 660 wavelength or 880 wavelength.
This machine is FDA approved, but is not near as strong as the professional models. (Also much less expensive!)

When I applied the light paddle to my face to heal pimples, I noticed my sinuses would clear.
Maybe this would be helpful for your son.

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WakeUp
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I irrigate once or twice a day with a netipot filled with distilled water, 1/4 teaspoon salt, 1 drop of baby shampoo (breaks up biofilm) and one of either: a 1/2 packet of xilitol, OR 5 Citridrops (kills biofilm and mold), OR 1 teaspoon of Manuka Honey mixed well in the water (kills biofilm and mold). I suppose you could combine all these, but I rotate them.. The honey is really nice and soothing!

This routine above seems to be helping me if I do it consistently every day. Also-- try never to swallow nasal mucous because its just ingesting the bad stuff and probably contributing to biofilm in the intestines.

Baby shampoo and manuka honey in the netipot have helped many people (see Boogerdoctor website) http://www.boogordoctor.com.

But don't use more than two drops of shampoo because too much will sting! The lather does slowly break up biofilm in the sinuses and the Manuka honey kills the bad stuff.

Good luck to all those with sinus issues here--- it can be almost as bad as Lyme.

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