I have been in very aggressive Lyme treatment for 3 1/2 years, but couldn't get to symptom free. Was it on going infection? Unlikely, because I have been treating them all at once for the last year and a half.
I have been doing it a while now, the herxing is unbelievable. I am on a break to clear some toxins right now, and I'll tell you what...I am starting to feel freaking great I know it will probably be back to herxing once I start back on the protocol...but I will enjoy today
I think we have another coinfection folks... Posted by GretaM (Member # 40917) on :
I believe you're right, RC1.
I had aspergillus Niger colonized in my ear about 7 years back.
Every since then...sinusitis.
When I first started treating lyme, my sinuses cleared up. They were so clear and it was so easy to breathe, it was amazing.
Since treating lyme bart babs et al. (Still treating).
My sinuses have jammed up again.
It is so high up, it can't be blown out or saline rinsed out. Xylitol rinses do help, but I have to do them 6 times a day, and I am lazy.
I can't open the blog page on my handheld, but I believe it is about the fungicide you put up your sinuses?
Anyways, I am so glad it's working for you.
I am going to ask my doc if I can do this next time I go in.
Thanks so much for sharing your experience with this protocol.
Posted by birdie67 (Member # 35994) on :
Hi RC1,
I am also doing the Naso Touch but with Itraconazole. Also doing Ampho B nasal spray. My LLND will add in the biofilm breaker after about a month.
How are you doing with treatment? I did great for the first 8-10 days and then hit the wall. Took yesterday off. Lot's of herxing! wasn't sure it was from the nasal protocol or what, but after reading your previous post on this, I'm thinking it may be.
Let me know how it's going for you. Hope it's well Posted by RC1 (Member # 31923) on :
Hi Birdie, I hit the wall at about day 9 too. The herxing is rough. I had since gone gone to a 1/2 a dose a day. Then had to go on break. I'm leaving for a visit with friends shortly and I'm planning to take some time off of it.
The herxing can get very intense...did for me anyway. It felt just like a big Lyme herx. This is one crazy ride Birdie. I am just wondering when it's ever going to end...
I have been at it since November 18th. Off and on. No end in sight...
Posted by birdie67 (Member # 35994) on :
Wow, such a tough treatment. Sorry to hear it's been so hard for you too. Hopefully that means it's working and killing the mold in the sinuses.
I will continue with treatment but may scale back a little like you. Can't believe the herxing from this. Unreal!
Posted by RC1 (Member # 31923) on :
Birdie, how did your CAT scan turn out? Did you end up having a fungal ball? Did the scan show anything at all?
Posted by TerryK (Member # 8552) on :
I did the nasal treatment for MARCONS about 1 1/2 years ago. My sleep apnea almost disappeared. My sleep doctor was surprised to say the least.
My sleep apnea is about 25% worse again and so my new protocol nasal itraconazole (for fungus)
nasal steroid (get swelling down so I can absorb meds)
BEG nasal spray (abx and edta to break up biofilms and kill bacterial infection)
oral abx to catch whatever is released with the biofilm breakup
nystatin to keep candida down
This is only my 2nd day on the full protocol and I woke up feeling like my head was beaten with a hammer. I hope it isn't like this for the whole month I'm in treatment.
I'm using binders to get rid of the toxins created by die off since I've had the genetic testing that showed I can't get rid of borrelia or mycotoxins very well.
Hopefully this protocol will get rid of the sinus infections and sleep apnea once and for all.
My sister had a fungal ball in her sinuses. It took several years for the doctors to figure it out and then they would only give or oral antifungals to keep it under control. Wished I had known about this back then.
Terry
Posted by RC1 (Member # 31923) on :
Birdie and Terry, What was the condition of your sinus prior to starting the treatment? Did you have any indication that anything was going on in there?
I really didn't. I do have allergies, but I just had some stuffiness in one side of my nose. I am also allergic to mold so to me it seems as though having mold in there would make me stuffed up, but it really didn't. I guess maybe because of the biofilm.
I'm with you Terry, I wish I would have known about this a long time ago. I think it may have cut my treatment length down some...I also can't clear Borrelia or mold toxins well. I am doing charcoal (recommended) and Welchol. Those things don't really seem to be keeping up with it too well though.
Posted by birdie67 (Member # 35994) on :
The CT scan was normal. No fungal ball.
I do have constant sinus drainage, always clearing my throat. And nose is always irritated. Do you have that as well? Woke up this morning and felt like i had a slug in my throat! Yuck!
Posted by birdie67 (Member # 35994) on :
Terry, your protocol sounds good. Hopefully you will get relief with it. I was just reading the link RC1 posted about the findings and presentations of people with mold and fungus in their sinusues. Interesting that it can stay in there for YEARS even after removed from the moldy environment.
Posted by RC1 (Member # 31923) on :
I do have the drainage also, but my nose wasn't very irritated. I know what you mean about having a slug in your throat...yuck, is right!
Posted by birdie67 (Member # 35994) on :
RC1, do you think systemic enzymes would work to get the biofilms or should I do the EDTA?
Posted by birdie67 (Member # 35994) on :
Also interesting about the findings in that article is that neurological symptoms, such as vertigo, tremors and ataxia were all relieved with treatment. I suffer from all three of those.
Posted by RC1 (Member # 31923) on :
Birdie, I don't think the systemic enzymes will get to it very well. Only 5% of the Ampho B gets into the bloodstream so I have a feeling it works the same way with the stuff we take orally. I am doing the EDTA along with the ingredient in baby shampoo. You can get that Chelator from ASL pharmacy.
I also have those symptoms too...
Posted by birdie67 (Member # 35994) on :
Okay, thanks. I will ask at my next appt to add the Chelator.
Hoping i see some improvement with my vertigo from this. That is my most bothersome symptom.
Posted by RC1 (Member # 31923) on :
Just wanted to add the article that Birdie is talking about in case anyone wants to take a look.
RCI asked What was the condition of your sinus prior to starting the treatment?
I had the same symptoms as yours. I also had low MSH (melanocyte stimulating hormone) which will keep one feeling sick and will likely never get better unless MARCONS are treated. See mold warriors for more detail. This link may also help explain.
Cholestyramine is supposedly more effective than charcoal. I've posted some links about this in the past. I use both as needed via muscle testing.
Birdie - thanks - I hope this makes the difference for all of us.
Terry
Posted by RC1 (Member # 31923) on :
Terry. I have low MSH as well, virtually nonexistent. I did treat marcons a couple of years ago. I will probably give it a go again. I have CSM but it such a hassle to take. Dr. B. the one in the article said that charcoal is a better binder for dead mold spores, I agree that CSM is the better choice for mycotoxins.
You know I have a feeling that it might be actually reducing the biofilm during Marcons treatment is what is leading to improvement not killing the Staph.
Posted by Michael_Venice (Member # 17254) on :
I'd like to know what 'herx' type symptoms people are experiencing with this Dr. Brewer type protocol…..
thanks!
Posted by map1131 (Member # 2022) on :
Greta, one thing I remember from darkfield was her telling me I had aspergillus niger in my blood.
It was all so confusing back in '03. Seemed so complicated to me. Overwhelmed.
Wow. Wonder if it's still there? I thought I rifed for it but if it's anything like the other bad guys I fight....it's probably still hanging out and built it's army up again.
Don't remember how often or how long I rifed for it. No telling. It could have been one time or several.
I don't have sinus issues, but my ears are a big issue. Today they are driving me nuts. All the way down into my lymph nodes from ears feel inflamed and irritated.
Pam
Posted by RC1 (Member # 31923) on :
These have been my herx symptoms, Muscle and bone pain, joint pain, jaw pain, tooth pain, headaches, nausea (intermittent), fatigue (profound), shortness of breath, chills, insomnia.
These are symtoms that I was still experiencing but only in short duration prior to the treatment, sometimes they would just last a few minutes.
On the treatment they come and go too, but I would be fatigued constantly and and pretty much have constant inflammation.
After I stop the treatment (because it scares me how sick I am getting sometimes) it takes me about 4-5 days to go back to my baseline.
I do think my baseline is getting better though. I was at 90% plus or minus before starting this treatment. I should add that I think I've had this mold thing for a long time. Before I got Lyme I wasn't operating at what was normal for other people. So I am 90% of what I was preLyme.
Posted by Kudzuslipper (Member # 31915) on :
What exactly are you doing RC1?
Posted by Michael_Venice (Member # 17254) on :
RC1..thanks very much for that info. I'm doing it too…it seems to have knocked me pretty flat a few times. But I'm still on the bad side of being mostly sick, so I never know what is working me over for sure.
Really glad to hear you're up to the 90%.
Posted by RC1 (Member # 31923) on :
Kuds, The treatment I'm doing is in the link on my first post on this thread.
Micheal, In a way I wish I had done it when I was still on the bad side of being sick because it's so hard to go back there...
Posted by surprise (Member # 34987) on :
My daughter and I did the mold protocol (both tested for 1 copy of 'dreaded HLA')
it was at the very beginning of treatment, w/ our 1st LLMD, who was VERY into Dr. S protocol.
CMS powder, BEG spray, etc. but we never had sinus issues, neither of us even have seasonal allergies. Getting our house tested, inspected, small repair, all the Dr. S tests that our insurance never covered,
cost several thousand dollars. I'll never look or think of mold the same again, and am now hyper aware.
It wasn't our ticket, the mold protocol, but I would like to think it helped. Our previous LLMD really truly believed if you are a 'mold person' you will not get well without taking care of it.
Posted by Mystictreeoflife (Member # 42943) on :
My son and I are doing this protocol since November too. We also mist two antibiotics.
I've treated Lyme for 1.5 years and never herxed. This protocol slammed me after 8 days... sick as a dog. We've had to take breaks too.
We also have the Shoemaker dreaded HLA-DR genotype and can't detox mold or Lyme. As far as binders, apparently CSM binds some of the mycotoxins and charcoal binds others. But we can't detox fast enough.
Overall, some issues may be a little better. Not really sure.
Posted by Splashi1 (Member # 28173) on :
Just wondering if someone could lay out the protocol?
RC1, I did look at your link, but couldn't find a protocol on there. Am I missing something?
Also,I am assuming that a swab is done initially, and then it is sent out to be tested for mold types? I don't really have bad sinus problems, however, my brain MRI showed " schmoid sinus mucosal thickening" which I thought was interesting.
Posted by RC1 (Member # 31923) on :
Splashi, I didn't do a swab it was all based on my past history. Your MRI is interesting for sure. Here is the protocol
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/ Posted by CD57 (Member # 11749) on :
My ENT just informed me that the turbinates inside my nose are all quite swollen. She gave me Flonase and for the first time in I can't remember how long I could breathe through my nose! She also said I have a very long uvula. I also snore quite badly and always have.
Have low MSH high TGF-b1 low VIP high MMP9, and the HLA that has mold problems. I know of no exposure past or present, to mold.
I also have MARCONS.
How does one get a doc to do this protocol, are there specialists?
I have always blown off mold but can't get anywhere with coinfections treatments. I guess this is real, isn't it?
Posted by dbpei (Member # 33574) on :
This is an interesting thread. I have a mysterious cyst in my sinus above a dental implant that has been there for over a year.
Most of my symptoms are from the neck up and I lost my sense of smell years ago. Had sudden hearing loss 3 years ago. Bad tinnitus and odd buzzing, internal vibrations since that time.
Cat scan shows the cyst and some mild inflammation, but ENT thought it was benign. I am going to a new ENT for second opinion.
Ozone treatment of sinuses, ears, jaw, head and neck seems to be helping, but I am not sure it will be enough.
Posted by surprise (Member # 34987) on :
CD57, if you are in northern CA (I think you are) PM me if you want to go further with it.
Posted by Splashi1 (Member # 28173) on :
Thanks so much for posting the protocol, RC1! I appreciate it!
Posted by soccermama (Member # 35101) on :
If you go to realtime labs, they have a phone number called patient advocate. They will give you a list of doctors in your area or state.
This is the lab that does the urine testing for mycotoxins.
Just saw my LLMD yesterday and will be getting the urine test done. Also have the HLA gene for mold and was exposed to WDB in college.
I am hoping that this is the last piece. I have made great progress but now at a standstill.
Posted by Jane2904 (Member # 15917) on :
Great Thread, hoping for updates from those that are treating.
Our daughter just tested post. from realtime labs.
Looks like a nasal treatment from ASL labs will be starting.
Itraconazole with Chelating PX. Daughter has red and swollen sinuses. She says her sinuses always feel dry and stuffy.
Lyme treatment only made her feel worse and was not able to tolerate the treatment.
Her Dr. said that the itraconazole, is easier to tolerate. Is this true?
She will being starting treatment once a day , two days a week. She is very sens. to many meds, supplements. So her Dr. wants to go slow.
I am holding my breath, that she will be able to treat and get better.
Posted by Catgirl (Member # 31149) on :
Right on RC1 (90%)! No wonder we are all so sick. My doc wants to test me for this too, and I won't be surprised if I have it. It just amazes me all of the stuff we have to deal with.
I just want to throw it out there that there could also be some overlapping symptoms from more co infections (FL1953, parasites). I used to have crazy sinus issues (congested, stuff in throat), ear issues, allergies, etc that, for the most part, went away with parasite treatment (occasional stuffiness--I breathe so much better now). My sinuses still drain a little whenever I treat, but to a much lower extent. But I still have something going on--probably the mold.
Jane, I'm glad your daughter's doc found it. I hope she feels better soon. Posted by Michael_Venice (Member # 17254) on :
I'm wondering if anyone else would like to share the results of their mycotoxin tests. I tested positive for all three, but am really not sure where I am on the spectrum of things. I'm not sure if my results are high, average, low-ish.
Results are from Realtime Labs (not sure if anyone else even tests these)
Posted by dbpei (Member # 33574) on :
I would like to be tested for mycotoxins. Did your LLMD or LLND initiate this test, Michael? I would think this test could give you a clue as to whether it is mold, a fungus, (rule out parasites?) or if your body having difficulty with getting rid of die-off that is keeping you sick.
Posted by Jane2904 (Member # 15917) on :
Does anyone know if the chelating px agent contains sulfites?
Posted by Jamers (Member # 28016) on :
Does anyone know if doing the yeast diet can help clear mold? I just started my diet again and am having the same symptoms as you RC1. VERY fatigued, brain fog, weakness, blurred vision, insomnia...
Posted by Michael_Venice (Member # 17254) on :
dpel,
yes, my doc tested me for it. Like a lot of people, my illness coincided with a mold exposure. And it's driven me crazy that I just coincidentally also got bartonella and babesia (both multiple positives, including batt culture) with this and it all made me very sick. I'm well out of that mold environment (note: wasn't even questionable, guys in hazmat suits basically came in and evacuated us from the office I was working in). The thing is, though, I got sick and never got well. Premise is that mycotoxins might be driven by ongoing fungal infection in body+inability to detox them well.
That said, it does appear that my mycotoxin levels are high enough to be significant. I've been really careful about not eating foods that could have mycotoxins—at least those three.
I also didn't want to confuse the thread, but I've been doing the ampho-b regimen described here. I couldn't tolerate cholestryamine—don't know why, thought it'd be easy—I tried 3 time.
I have been doing charcoal, clay, nebulized glutathione and epsom baths for the past months…and I do have a follow up mycotoxin test to the results I posted above in which I've brought the levels of all 3 down by about half. Tricothecene is actually a negative result now. So, I think/hope I'm making progress.
but I've been trying to get a sense of what levels other people have found when they've been tested.
Posted by RC1 (Member # 31923) on :
Excellent article on specific symptoms linked with the different mold species.
Michael, CSM is a very difficult thing to tolerate. The way I got going on it was to start extremely slowly. 1/2 a dose once a day for a week, then increase by 1/2 a dose. You could even start with 1/4 of a dose. I also took it with high dose fish oil. 6 to 9 caps a day, to tamp down the inflammation.
I don't think I would have been able to get to the point I'm at without it. I did charcoal by the handful prior but it didn't clear the toxins. It helped though, because it gets toxins CSM doesn't.
I also do VIP. (DR. S. Protocol) that comes compounded from Hopkington Drug in MA. I wasn't so sure about how much this was helping. Since doing the nasal treatment and all of the herxing going on with that, my inflammatory markers became a mess. (I can't prove this, it's anecdotal).
I went back on the VIP and I am now back to my baseline. It really seemed to help a lot.
I was advised by a friend who is an ear, nose, throat doc that I should get an CAT scan to make sure that this isn't something too big for the Ampho B treatment. If it is I will get surgery to have it removed. My appointment is today.
I have stopped the treatment for now. If it's safe for me to go forward with it I will. I'll keep you guys posted.
Posted by Jane2904 (Member # 15917) on :
Thanks for the update RC.
Good luck at your appt.
Posted by thehause (Member # 21237) on :
I'm under treatment with JB in Kansas City. I did the RealTime labs test after not getting better with long term treatment for Lyme. My RT labs test results showed heavy levels of Ocratoxin (2.1) & INCREDIBLE Tricothecene (4.83). The thresholds for these are 2.0 & 0.2 respectively. Sucks.
QUESTION: HOW LONG DOES IT TYPICALLY TAKE ON TO REMOVE THIS STUFF WITH CSM AND CHARCOAL? I have no idea and it is hard to really research.
Hause.
Posted by RC1 (Member # 31923) on :
Well ultimately you are continuing to be exposed to mold. You will need to figure out where.
Test your house with an ERMI from Mycometrics, or EMSL labs. Anything over a 2 is a problem.
Then there is the internal mold hypothesis which is being discussed in this thread.
There is some info in this link that talks about how long it takes to get rid of the toxins http://www.mdpi.com/2072-6651/6/1/66/pdf Posted by thehause (Member # 21237) on :
Huh? I think you missed where I actually gave the threshold levels (it is 0.2 for Tric's).
I also indicated treatment for internal mold... "I'm under treatment with JB in Kansas City."
My question was referring to the actual detox period... what do you know in terms of tenure. 1 year, 3 months, etc.
Posted by RC1 (Member # 31923) on :
You didn't mention that you were doing the nasal protocol, I thought you were just doing binders. The protocol length would be determined by how long it takes to kill the spores in your sinus.
For some people it can be only a month, for others a lot longer. I did it for two months and I was herxing a ton. I took a break and then I did just one dose and herxed off that, so I know it isn't gone.
I just got a CAT scan to make sure I don't have a fungal ball. If it's all clear I will resume the treatment. I don't know how long it can take. Nobody really knows because it's a pretty new protocol.
Posted by RC1 (Member # 31923) on :
You said you were with Dr. JB, what is he saying?
Posted by thehause (Member # 21237) on :
Are you in Kansas City as well?
I did the nasal therapy for about 8 months, though I didn't do it to as regimented a level as I should have. That stuff hurts. I'm not really feeling totally better, but I am probably a bit. Who knows why. I think the issue is those toxins already in my system but not really bound / gone. I have been doing binders for 9 months, but only 1 scoop of CSM with a bit of charcoal on top. I have too many meds to take to do it several times a day, I believe. They won't get absorbed.
Any thoughts?
Dr B said I can leave the nasal spray and try this stuff called Sinusoothe. I don't think he really knows if I will get better or if so, how long it will take. But some people have more experience with binders than I do, so I'm trying to get an idea how long they've taken them.
How often were you doing the treatment? Nine months is a long time. Are you still on abx?
I hear you about the binders. It's really hard when you have meds to take.
I have been doing one dose a day of either CSM or Welchol for like 2 years. I did find another slot to fit in some charcoal. When I get up in the night to use the bathroom I take a handful of capsules.
I'm pretty sure in the paper that I posted (the link) it states how long it takes to clear the toxins, I think I read that the longest duration is a month. Dr. S. says toxins can and do accumulate. Who knows who is right.
I'm not in Kansas City. My LLMD is treating me with this protocol.
Posted by RC1 (Member # 31923) on :
The info on toxin clearing time isn't in that paper. I thought that is where I read it. I'm going to look through some things that I saved and see if I can come up with it.
Posted by thehause (Member # 21237) on :
I'm not doing the treatment right now. I get my SinusSooth in a few days and will begin with it. I'm just taking a break.
I'm not taking ABX right now. MY CD57 is low-but-normal so we're off them for now.
I didn't have time to read all the paper, but 1 month doesn't seem very long if the toxins can actually keep recycling through the intestinal track.
Posted by thehause (Member # 21237) on :
Ahhh, ok then. I feel like it should take years. Especially if the binder doesn't strongly work against the specific toxins.
Posted by Ifish (Member # 43501) on :
Brewer Patients:
I am also a Brewer patient. It has been a hit and miss learning curve for him. He has now 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
Over 90% of his patients can tolerate this. He is working with ASL to develop other atomized fungal medications that might be easier to do. Nystantin is one that just became available. The results he reported to me are quite exciting. I wouldn't give up on it.
Posted by RC1 (Member # 31923) on :
I did this to get rid of biofilm, it's crazy how well it works. It works a lot better than Chelating PX, in my opinion.
I did it three days in a row and my post nasal drip was completely gone. It came back though after a few weeks. I'm going to start doing it every other day, with a saline rinse on my day off.
The big question is this. What will happen when I add the Ampho B? I went off abx for six weeks in January and I had a big Bart relapse.
Regarding that, I don't think that Septra with Mino and Zithro will clear the infection...based on my experience. I'm taking the whole dose of Rifampin one time a day in the morning. This is making me herx like crazy unlike the Septra protocol.
When the Bart herxing subsides I will go back to addressing the sinus problem. I did have that cat scan and it came back all clear, the ENT said my sinus looked perfect, other than having a deviated septum.
Ifish, thanks so much for your post. Please keep us updated as you find out more. I think I'm going to ask my LLMD for the atomized Nystatin instead of the Ampho B.
Posted by Ifish (Member # 43501) on :
RC1 I would encourage you keep working on the sinus/mold issue. I've known Brewer for 17 years. I spent alot of time with him last week. He told me about patient success in great detail. He is on to something major.
Posted by RC1 (Member # 31923) on :
Thanks Ifish, I plan on it. I am only willing to herx one thing at at time at this point. I've been at this too damn long. I don't want to go back to being disabled.
I too, think he's on to something big here...Thank god for docs like him. Ones that are searching for new answers to old questions.
Posted by thehause (Member # 21237) on :
quote:Originally posted by Ifish: RC1 I would encourage you keep working on the sinus/mold issue. I've known Brewer for 17 years. I spent alot of time with him last week. He told me about patient success in great detail. He is on to something major.
Has Dr. B spoken to you about Sinusoothe? How long have you been treating your sinuses?
Posted by Ifish (Member # 43501) on :
thehause, He did not talk about sinusoothe. If you cannot tolerate Ampho B then nystantin is a possibility, but it is very early on this one. (Only one patient is using it) He is also working with ASL to develop kinder delivery systems for the Ampho B. He is also quite enthusiastic about Micafungin which is now IV only but ASL is working on making it available as an atomized medication.
I haven't started the treatment yet. I will later this week. A couple months ago I started using atomized antibiotics through my ENT and it has helped me a great deal.
Posted by RC1 (Member # 31923) on :
I did Ampho B, via two different methods, for about a year along with intranasal ABX. I'm now only doing Sinusoothe, and sometimes intranasal glutathione. I don't really notice a huge difference yet.
I'm pretty sure I have rhinitis from the Sinusoothe. I do have some chelating agent from ASL - though I don't recall what it is anymore. I have had sinus issues since childhood.
Posted by learning (Member # 27189) on :
Ifish and RC1, Does Brewer have you use charcoal daily or twice daily (as I hear some of the mold doctors do along with other binders in a cocktail)?
I understand that the charcoal is more to mop up dead mold spores.. ?
I have an issue with histamine intolerance and mast cell activation that may have been triggered by the infection in my sinuses (which may still be there in biofilm post surgery).
Dr Grant (Irene) did mention mast cells in an online interview I listened to recently. She is also using a similar protocol. She said that mast cells react (spill contents/degranulate) to hyphae.
Ampho B is contraindicated for people with mast cell activation.. I'm wondering if you have heard any mention of voriconizole as an alternative. I'm reading above that nystatin might me an alternative Brewer is trialing in this thread or another. I thought nystatin only addressed candida?
The mast cell activation and histamine intolerance have become a real issue. I am on meds and herbs to control this. The concern with Ampho B is anaphylaxis.
Posted by RC1 (Member # 31923) on :
Hi Learning, I am not a patient of Dr. Brewer. My LLMD saw his presentation at the ILADS conference. Yes to charcoal. I was doing Welcol alone for a bit during this protocol in the beginning. Charcoal added in made a big difference with how I was feeling daily.
Some are saying to take them at the same time, but for me they seem to work better taken apart from each other.
I can't advise you about the mast cell thing and Ampho B. All I can say is only 5% enters the bloodstream, I don't know if it being such a low dose, would it cause problems for you?
The nystatin is a new formula that can be atomized.
Posted by Ifish (Member # 43501) on :
I asked Brewer specifically about binders and he no longer recommends using them. His patient have used them in the past with no apparent effect. His thought process is this: By virtue of the fact a patient tests positive for mycotoxins shows the patient can detox. The urine sample has mycotoxins in it, therefore it is leaving the body. It is all about input and not output. Take care of input and the output will take care of itself. He mentioned patients with a known exposure many years ago. They are detoxing just fine but are still sick.
ASL is producing voriconizole. Brewer has used it with many patients but he does not feel it works as well. About 10% of his patients cannot tolerate Ampho B and he is looking for alternatives. Some antifungals have a short life when mixed in the atomizable solution so this has been a problem. Nystantin is now available but he has just started using it, so its efficacy in this setting is unknown. Brewer is more excited about micafungin. A patient of his had excellent results with IV micafungin. ASL is working right to formulate this medication in an atomizable form.
So right now you can try either voriconizole or nystantin. Eventually you should be able to try micafungin. Do not forget about Chelating PX. If the biofilm is not broken down the antifungal will have limited efficacy.
I cannot comment about mast cell activation and histamine intolerance. I never discussed that with Brewer.
Incidentally, we have three family members on the protocol. We have all been able to tolerate the treatment just fine. We have all experience significant die off symptoms.
quote:Originally posted by learning: Ifish and RC1, Does Brewer have you use charcoal daily or twice daily (as I hear some of the mold doctors do along with other binders in a cocktail)?
I understand that the charcoal is more to mop up dead mold spores.. ?
I have an issue with histamine intolerance and mast cell activation that may have been triggered by the infection in my sinuses (which may still be there in biofilm post surgery).
Dr Grant (Irene) did mention mast cells in an online interview I listened to recently. She is also using a similar protocol. She said that mast cells react (spill contents/degranulate) to hyphae.
Ampho B is contraindicated for people with mast cell activation.. I'm wondering if you have heard any mention of voriconizole as an alternative. I'm reading above that nystatin might me an alternative Brewer is trialing in this thread or another. I thought nystatin only addressed candida?
The mast cell activation and histamine intolerance have become a real issue. I am on meds and herbs to control this. The concern with Ampho B is anaphylaxis.
Posted by thehause (Member # 21237) on :
What if the biofilm / mold colony is not in the sinuses but in the lungs?
Posted by Ifish (Member # 43501) on :
Brewer thinks the issue is the sinuses in the vast majority of cases. I don't know how you determine if there is colonization in the lungs or how it is treated.
quote:Originally posted by thehause: What if the biofilm / mold colony is not in the sinuses but in the lungs?
Posted by Jane2904 (Member # 15917) on :
Hi Ifish,
What were the die off symptoms you and your family experienced?
Interesting that Dr. Brewer is not using binders now.
Best of luck with treatment.
Posted by Ifish (Member # 43501) on :
Mostly, more fatigue and malaise. My wife and daughter have treated for just over a week and it seems to be easing now. I am only on my third day and I'm really feeling it right now, but if it eases up in another week or so, it will be OK.
quote:Originally posted by Jane2904: Hi Ifish,
What were the die off symptoms you and your family experienced?
Interesting that Dr. Brewer is not using binders now.
Best of luck with treatment.
Posted by thehause (Member # 21237) on :
I treated with Brewer as well. I took Vora and Ampho intranasal and notice no die-off symptoms. I don't know that there are any specific to die-off. That said, my mold test was really high, so perhaps I am too sick to notice.
Posted by Jane2904 (Member # 15917) on :
Thanks Ifish,
Good luck to you and your family with treatment.
Posted by CherylSue (Member # 13077) on :
What binders is B....r not using? CMS? Questran? So he doesn't do Dr. S's protocol?
Posted by Jane2904 (Member # 15917) on :
Bringing this up to see if any updates with those treating.
Posted by RC1 (Member # 31923) on :
I am not treating it right now. I have my hands full with this Bart relapse, or should I say under treated Bart, that came back full force. I do want to get back at it but I've had a big setback. I can't do both because I won't be functional.
Posted by seattletom0 (Member # 8267) on :
hey hey how are things going? did you ever go see Dr. M? asked them for consultation but have not heard back from them hope all is well tom
[ 05-15-2014, 10:25 PM: Message edited by: faithful777 ]
Posted by Jane2904 (Member # 15917) on :
Bringing back up to see if Ifish may have any updates.
Posted by Ifish (Member # 43501) on :
Jane2904, Sorry, I haven't been on this forum for a while. Here is an update. My wife, youngest daughter and I have entered into the third month of the treatment. My oldest daughter has returned from college and is now in her second week of treatment.
I have been ill for nearly 23 years. During time, I have been able exercise minimally. Over the last couple of years I've lost this ability altogether. I have not exercised even a single day for the past year and for about two or three years prior to that only very rarely.
I suddenly gained the ability to exercise about a week ago. I am now able to walk a couple of miles, about 30 minutes on most days. I now know I feel better and I have more energy than I did prior to the protocol.
For the last couple of weeks my wife has said she is "definitely" better than before she started the protocol. She is not well by any means, but there is a clear and noticeable difference.
My youngest daughter is by far the sickest. She is 18 years old and had to quit school when in the 6th grade. She has not been well enough to even tutor at home for the last 3 1/2 years. Her excursions outside the home are very limited due to her neurological symptoms. The only thing I can say for certain is that she is feeling better than she did during worst of the die off. I am not sure if she is better or not than she was prior to the start of the protocol.
My older daughter is the least effected by the illness. She lives a fairly normal life, but has a great deal of fatigue and sleep issues and other symptoms. The start of the protocol has effected her similarly to the rest of us but she is still very active. She is definitely feeling worse from the die off.
What really stands out about the treatment is how much is effects fatigue and malaise. During the die off I often slept 10 hours a night, sometime more, while barely moving a muscle. In order to get through it we had to pare down our activity level to the bare minimum. The good news for the three of us is that the worst seems to be over.
Posted by birdie67 (Member # 35994) on :
Thank you for the update, Ifish. Glad to hear that 3 of you are making progress.
Can you tell me exactly what your protocol is? I have tested positive for aspergillus in both my sinuses. Was doing a different protocol with minimal success.
Thanks so much!
Posted by Ifish (Member # 43501) on :
For most people, it is a two part daily protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Atomized Amphotericin B in the evening
For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. I beleive he is using nystantin for most of these patients.
Posted by Ifish (Member # 43501) on :
quote:Originally posted by CherylSue: What binders is B....r not using? CMS? Questran? So he doesn't do Dr. S's protocol?
Brewer's protocol is entirely different the Dr. S protocols. He feels the issue of mold patients is the continuous production of myctoxins growing in the sinuses. He does not feel the issue lies with an inability to detox, thus is generally does not recommend binders.
Posted by birdie67 (Member # 35994) on :
Thank you, Ifish. I'm going to ask my Dr to do this protocol.
Wishing you continued success, keep us posted Posted by Ifish (Member # 43501) on :
birdie67, It has been a tough ride but things are really looking up for us now. Just remember that the die off is difficult, but you have to keep your eye on the prize. I suddently got better in the third month. My wife is better but really up and down. My youngest daughter seems to be slowly working her way up to the break even point. So it is highly variable. Best of luck and let us know how you do.
Posted by Jane2904 (Member # 15917) on :
Thanks for the update Ifish, so glad to read that things are improving for you and your family.
Posted by Anxiety soldier (Member # 43885) on :
Bump
Posted by Ifish (Member # 43501) on :
My wife and I took our 18 year old to see Dr. Brewer. Much has happened in the three months since we saw him last. We covered a significant amount of information which I plan to post, but I will need to do that in installments.
RealTime Labs has formed a scientific committee with eight members. All are MDs or PhDs. Brewer is on this committee. They have collected data on approximately 300 patients. Of this number Brewer has attempted to treat approximately 150 patients on the AmphoB/Chelating Px combo. About 1/3 could not consistently stay on it due to side effects from the AmphoB, including nose bleeds. (He is developing alternatives - more on this later).
Of the remaining 1/3 (approximately 100 patients) 94% have reported improvement and approximately 25% have returned to normal. These patients have been on the protocol on average about 6 months. The 6% that did not improve are not necessarily lost causes. Some might need more time, some might have bacterial infections holding them back. (Brewer believes that antibiotic resistant staph infections may be involved in many patient - more on this later).
Brewer will use this data to publish another paper. This might happen within the next couple of months or so. He recognizes that it will fall short as far as a lot of folks are concerned, since it is not a blinded study and improvement is measured subjectively. One thing that will be measured and reported scientifically is a drop in mycotoxin levels due to this treatment. This drop in mycotoxin level corresponds directly to improvement in reported symptoms.
He has discovered that it can take a very long time for extremely ill patients to improve. He recently saw a patient who had a slight, if any, improvement at six months.(This patient had been bed ridden with extreme abdominal symptoms including vomiting several times a week.) At one year on the treatment the patient is 50 to 60% improved and is continuing to improve.
We reviewed my daughter's laundry list of symptoms including anxiety, nausea, sensitivity to light, sound and touch and bladder and gastrointestinal discomfort. All of these issues have improved in one patient or another. Some patients have experienced a complete resolution of these type of symptoms.. Therefore, there exists a possibility of improvement in all these areas. (In fact my daughter did report improvement in some of these symptoms)
Six of Brewer's patients who became well attempted to discontinue treatment. All gradually relapsed over a long period of time but improved again upon retreatment. He does not know how things would be handled long term. Maintenance dosing might be required or the mold colonization might be completely eradicated if treated long enough.
Posted by Jane2904 (Member # 15917) on :
Thanks so much for the update IFish,
Glad your daughter is improving.
Posted by Anxiety soldier (Member # 43885) on :
Birdie67,
What was the protocol you were doing? How did they test your sinus for molds? Was it just a nasal swab? Is so what lab?
Thanks
Posted by birdie67 (Member # 35994) on :
Anxiety,
I was tested by nasal swab and it was cultured. It took about 3 weeks for results. I will go back through my labs and see what lab it was, I can't remember.
I now doing BEG nasal spray and also Itraconazole. I also take cholestyramine to mop up the toxins that are being flushed through my sinuses.
I am seeing improvement. It is slow, but it is happeneing.
Posted by Ifish (Member # 43501) on :
birdy67, It is great to hear you are doing better.
Posted by thehause (Member # 21237) on :
hi Birdie,
Did Brewer recommend the lab culture? I tried but he wasn't interested in getting it done - I found this odd and somewhat conflicting.
thanks.
Posted by birdie67 (Member # 35994) on :
No, I had it done through Dr Janette Hope in Santa Barbara. She is a mold Dr.
Posted by birdie67 (Member # 35994) on :
Also, sticking to a no sugar, gluten and dairy diet has helped a lot too.
Posted by Ifish (Member # 43501) on :
Brewer now believes antibiotic resistant staph infections may be a cofactor in many patients. (I believe Shoemaker refers to this at MACRONS - multiple antibiotic resistant, coagulase-negative staph). He does not seem to think there really is a very good test for it as it can locate to far up in the sinuses to culture without anesthesia. Dr. Psaltis from Australia has done some interesting experiments with staph and mold in sheep. His group took healthy sheep and divided them into three groups. In 1/3 of the sheep researchers deposited staph into the sinus. A fair amount of biofilm grew. In another 1/3 of the sheep they deposited aspergillus. A fair amount of biofilm grew. In the last 1/3 they deposited both staph and aspergillus. The biofilm exploded exponentially. Brewer's drug of choice to treat the staph is mupericin. ASL pharmacies had been producing atomized mupericin, but according to Psaltis the dose was far to small. So now ASL is producing a high dose mupericin (100 mg). Psaltis believes the mupericin at this dose will not only kill of the staph, but will also break up the biofilm, possibly better than the Chelating Px. A fair number of ENTs have used this formulation for chronic sinusitus patients and have been enthusiastic with the results. Mupericin is one of the ingredients in Shoemaker's BEG spray. I don't know how the dose compares to ASL's atomized mupericin. Brewer is not doing any testing as he feels there really isn't a practical way to do it. He believes, for now, that appropriate candidates are individuals that are not getting better on the mold protocol or patients with chronic sinusitis. The treatment period is one month. My 18 year old daughter and I plan to go forward with this.
Posted by thehause (Member # 21237) on :
Ifish - how recent was your discussion with Dr. Brewer? Any idea on cost?
Posted by Ifish (Member # 43501) on :
All my other scripts from ASL Pharmacy have been treated like any other prescription medicine, so it should be covered by insurance. I just saw Brewer last week.
Posted by thehause (Member # 21237) on :
thanks
Posted by Skiii (Member # 44082) on :
Very interesting that Dr Brewer isn't using binders any more. I have noticed a slight improvement on them, and absolutely no side effects, so heck I'll keep taking them if they help me eliminate this stuff even a little bit quicker!
Posted by Ifish (Member # 43501) on :
About 1/3 of patients can't tolerate the Amph B. Bleeding is one of the issues that is causing problems. Brewer now has about 50 patients on Nystantin. It is not quite as good as Ampho B in the test tube. It does have the advantage that it does not seem to bother the sinus at all. It also does not absorb at all (I think a small amount of Ampho B does absorb), so it is possible to take it multiple times a day.
It is too early to know how effective Nystantin will be. However, a number of Nystantin patients have had die off reactions and the percentage of such patients is similar to the percentage of Ampho B patients that had die off reactions.
He now only has about 15 patients on Intracanazole. He feels it can work but it isn't nearly as good as Ampho B.
Posted by Jane2904 (Member # 15917) on :
Hi Ifish,
Thanks for the updates.
Posted by soccermama (Member # 35101) on :
OK, I have results that surprised me so I am needing some feedback. When I started on this journey three years ago, my first LLMD tested for the HLA gene test.
I tested positive for the gene that does not detox mold well. It was no surprise to me as I seem to react in moldy environments.
I was also in a WDB for a brief time in college.
When my progress in treatment stalled, I thought now would be a good time to look at the mold issue.
I just received the results back from my LLMD and all three types were negative. The only group that showed any detectable levels was the trichothecene at .11 ppb.
I can hardly believe it. I really was hoping that this was the missing piece. I have done a little research on the internet and read that Dr. Lisa Nagy says the use of a sauna can increase the numbers.
Has anyone heard about that? Also, increase the numbers from negative to positive? Can I rest assured that the negative is truly a negative?
Arrggghhh?!!! Help anyone?
Posted by thehause (Member # 21237) on :
Did you do a urine test? If so, I'd generally accept the results. Not a lot of gaming there and they account for dilution levels due to water intake.
Posted by soccermama (Member # 35101) on :
Yes. I had the realtime lab test urine test done. It tested for three different types of mycotoxin.
What I am trying to figure out is if the mycotoxins can get buried in tissue and not be "free floating" in urine?
Posted by thehause (Member # 21237) on :
Nope never heard of it. I would try to avoid finding hypothesis which would allow you to "source" your sickness.
quote:Originally posted by soccermama: OK, I have results that surprised me so I am needing some feedback. When I started on this journey three years ago, my first LLMD tested for the HLA gene test.
I tested positive for the gene that does not detox mold well. It was no surprise to me as I seem to react in moldy environments.
I was also in a WDB for a brief time in college.
When my progress in treatment stalled, I thought now would be a good time to look at the mold issue.
I just received the results back from my LLMD and all three types were negative. The only group that showed any detectable levels was the trichothecene at .11 ppb.
I can hardly believe it. I really was hoping that this was the missing piece. I have done a little research on the internet and read that Dr. Lisa Nagy says the use of a sauna can increase the numbers.
Has anyone heard about that? Also, increase the numbers from negative to positive? Can I rest assured that the negative is truly a negative?
Arrggghhh?!!! Help anyone?
It is important to understand what the test shows and what it does not show. It has to be interpreted by an expert. I am not an expert but there are a few things I can pass along. The test shows how much mycotoxin is excreted in a single sample. It does not show how much is stored in the body. When you excrete a mycotoxin you are in fact detoxing because the mycotoxin in leaving the body. If you are a poor detoxer than it stands to reason you might excrete a lower amount.
I have done several tests and the results have been highly variable. I have had a mycotoxin be at zero on one test and positive on another. Brewer has had a number of patients with initial negative tests who then had positive tests on the second attempt. According to Brewer we don't excrete mycotoxins at the same rate all the time. I have also read that some is excreted in the feces.
The one thing we know for sure is that on this one occasion you excreted a dangerous mycotoxin. (You should google trichothecene and you will see what I mean) I believe that further inquiry is warranted.
If you are not working with a knowledgeable doctor, you might consider just calling Dr. Hooper at Real Time Labs.
Posted by cigana (Member # 44198) on :
quote:Originally posted by RC1: I did this to get rid of biofilm, it's crazy how well it works. It works a lot better than Chelating PX, in my opinion.
I did it three days in a row and my post nasal drip was completely gone. It came back though after a few weeks. I'm going to start doing it every other day, with a saline rinse on my day off.
The big question is this. What will happen when I add the Ampho B? I went off abx for six weeks in January and I had a big Bart relapse.
Regarding that, I don't think that Septra with Mino and Zithro will clear the infection...based on my experience. I'm taking the whole dose of Rifampin one time a day in the morning. This is making me herx like crazy unlike the Septra protocol.
When the Bart herxing subsides I will go back to addressing the sinus problem. I did have that cat scan and it came back all clear, the ENT said my sinus looked perfect, other than having a deviated septum.
Ifish, thanks so much for your post. Please keep us updated as you find out more. I think I'm going to ask my LLMD for the atomized Nystatin instead of the Ampho B.
Hi RC1, Your link to the protocol is broekn, could you tell us what it was?Thanks Posted by soccermama (Member # 35101) on :
Thanks, lfish for your comments. I have an appointment with a functional medicine doctor to see if my detox pathways are functioning.
This research article demonstrated that the Realtime Lab test is highly sensitive and specific but we know that the levels can increase after detox methods are employed.
Is Dr. Hooper receptive to answering phone calls?
Posted by Ifish (Member # 43501) on :
quote:Originally posted by soccermama: Thanks, lfish for your comments. I have an appointment with a functional medicine doctor to see if my detox pathways are functioning.
This research article demonstrated that the Realtime Lab test is highly sensitive and specific but we know that the levels can increase after detox methods are employed.
Up for anxiety soldierr
Posted by Ifish (Member # 43501) on :
It has now been four months on the protocol for me, my younger daughter and my wife. My older daughter has now been on the protocol for over two months.
I have stated before that I am better, but I've never gone into a lot of detail. I feel it might be helpful to others if I did so at this time. It is important to understand I'm not new to this. I've been sick for 23 years. For the first seven years I had no diagnosis of any kind. Since then I have mostly operated under a Chronic Fatigue Syndrome diagnosis, but I have also been diagnosed with Lyme Disease and coinfections. I feel certain the Lyme diagnosis is wrong.
I can think of at least 14 different medical practitioners I have worked with during the course of my illness. I've made major commitments in time and money to many of them. I have conferred with many other medical providers that could offer no help. I've treated in five different states. I have read that long term sufferers of CFS do not experience a placebo effect. That is certainly true in my case. I have done treatments that helped me, but these improvements have been minimal and ended up being temporary.
There has not been any time during the last twenty years I have not been on one treatment or another. I have done endless antibiotics, including a five year stint I was on them every day. I did three months on daily IV antibiotics for lyme disease. On another occasion I did six months (seven days a week) of twice daily high dose IV antibiotics for lyme and coinfections. I've done many CFS related protocols, including protocols for mitochondria dysfunction, immune boosters, detoxification regimens, IV and oral chelation therapies, acupuncture, oral antivirals, IV antivirals, a number of other IV therapies with several providers including IV vitamin C, Meyers cocktails, detox IVs, etc. In the last few years I've gone through two different protocols for mold detoxification and treatment. I've tried a plethora of alternative remedies, some of which are just a little alternative, and some of which are way, way out in left field. As the years have marched on and other family members have become ill, they have done many of these treatments as well, all to no avail.
Through all this, in all of these years, none of these treatments worked for me, but the mold colonization treatment developed by Dr. Brewer is working very well. I take no binders and do not practice extreme mold avoidance, yet I continue to get better.
I was working at the time I became sick in 1991. I was able to work until 1998, but I should have quit several years earlier. My biggest issues have been extreme fatigue and malaise. I simply felt very sick all of the time. I have had a lot of issues such as peripheral neuropathy, chronic sinusitis (4 surgeries and never ending antibiotics), sleep disturbances, mental fog, headaches and body pain. I would gladly put up with these other issues if I didn't have so much fatigue and malaise.
At the time I started the protocol I was about a 3 on a scale of one to ten, with one being bed bound, two being able to be out of bed with very limited activity, and so on. In the last six year or so, I'd say I spent quite a bit of time being a 2 but I had improved up to a 3. This is pretty much the same range I have been in for about 15 years.
The protocol set me back significantly for about seven weeks, then suddenly I was able to start exercising. By this I mean walking for 30 minutes at a fairly slow pace. I have been able to exercise the great majority of days since then. In the prior year I was never able to exercise at all. Not a single time. In the two years or so before that I probably only able to exercise one time per month or less. .
I have slowly gained ground these last couple of months. I added the mupirocin about 4 weeks ago, which initially set me back but has now seemed to give me an additional boost.
I am now consistently around a 6.5 on a scale of one to ten. I am very productive and active every day. My daily ability to get things done is probably 3 or 4 times what it was previously. I have reduced the time I spend watching TV by about 70%.
My energy is up. My brain fog has diminished. I read more and comprehend better. I have less pain. My malaise is greatly improved . My over all quality of life has improved immensely.
I'm now able to go out and do things I wasn't able to do before. Earlier in my treatment I did things while really wishing I could feel better doing it, but now I am able to enjoy it much more. The best part of this is I can now plan to do something knowing I can and will do it. I no longer have to worry that when the time comes, I will have to cancel. This does not mean I can do everything I want to do. I still have limitations.
I had my first real check up in many years. I have lost weight. My blood pressure has dropped 15 points. My bad cholesterol has gone down. My good cholesterol has gone up. My labs were all good.
If I never got better than I am right now I would consider my treatment to be highly successful, even life changing. Of course, there are no guarantees about what the future will hold. I will just have to see.
I don't have as much feedback with regard to the other three family members. My wife, who has been working full time does feel better but she has had to pace through the protocol to keep working. What she notices more than anything is a dramatic improvement in her ability to sleep and an improvement in the quality of that sleep. It seems like she is really starting to rest (and improve) for the first time in years.
I don't ask my daughters how they are doing. They have been asked too many times and at the stage of life they are in, they don't want to talk about it much.
I do feel it is important that I mention my younger daughter. I had reported a while back that she had reached a milestone and had really turned a corner. I know that many people have been reading this thread and I have wanted to be as objective and accurate as possible. As such, I have tried to not overstate anything. In retrospect it seems she really hadn't improved as much as I thought. Then she went on mupirocin a few weeks ago she really had a major apparent die off reaction. She now seems to be past that.
I am confident she is now better than when she started, but it is not a profound improvement. She has had some minor symptomatic improvement but her neurological symptoms and fatigue continue to limit her greatly. She does have small windows of feeling better. These windows are pretty spread out, but when she is better it is quite clear because she is doing things that had not been able to do previously. She has been so sick these past six years that she has been very isolated and unable to interact with others around her own age. She has now been able to socialize on her good days, which is a very meaningful step forward. In the big picture, I feel she is just sicker and it will take longer, but she has great promise going forward.
Posted by birdie67 (Member # 35994) on :
Thank you so much for the update! sounds like you are all moving forward with improvement, especially you. How wonderful to hear!
Could you tell me exactly what your protocol intales? I am seeing my LLND next week and would love to try this.
I tested negative for Marcons but positive on a nasal culture for mold.
You can pm me if that's easier.
Thakn you SO much!
Posted by thehause (Member # 21237) on :
Please detail the treatment in the thread... if it is just mupirocin, or with a chelating agent, saline flush, etc... would like to hear.
Thanks!
Posted by GretaM (Member # 40917) on :
Does anyone know if there are different protocols for different mycotoxin/mold types?
Thank you
Posted by Jane2904 (Member # 15917) on :
Thank you for the detailed updates.
I hope you and your family continue to improve.
Posted by Anxiety soldier (Member # 43885) on :
I had a urine test done at Real Time labs and had a high level of Ochratoxin A.
My doctor prescribed Active Sinus rise saline 30 mins before the Nasal Touch atomizer, which I am using 60 Chelating Agent 15mg with 60 Mupirocin 15 mg.
Then after that, I atomize 60 Amphotericin B 5 mg.
The Atomizer Nasal Touch battery operated unit, atomizes the medicine into each nostril.
I am to continue this twice a day for the next 30 days, we will see how it goes.
Posted by Ifish (Member # 43501) on :
quote:Originally posted by thehause: Please detail the treatment in the thread... if it is just mupirocin, or with a chelating agent, saline flush, etc... would like to hear.
Thanks!
For most people, it is a two part daily protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Atomized Amphotericin B in the evening
For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. He is using atomized nystantin for most of these patients.
Brewer is also using atomized mupirocin for patients he suspects has multiple antibiotic resistant staph. Generally these patients will do the Chelating Px in the morning, the Ampho B at least an hour from everything else, and the mupirocin in the evening. The protocol has been discussed extensively at http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/
--------------------------------------------------------------------------------
Posted by Ifish (Member # 43501) on :
quote:Originally posted by GretaM: Does anyone know if there are different protocols for different mycotoxin/mold types?
Thank you
The protocol is not altered based upon mycotoxin type.
Posted by Anxiety soldier (Member # 43885) on :
when you use the nasal touch, and breath the medicine in, do you let it run back out your nose?
Also at the end do you blow your nose to get out all the crap or does that effect the treatment?
My doctor didn't give me then clearest of instructions.
Thanks
Posted by thehause (Member # 21237) on :
quote:Originally posted by Ifish:
quote:Originally posted by thehause: Please detail the treatment in the thread... if it is just mupirocin, or with a chelating agent, saline flush, etc... would like to hear.
Thanks!
For most people, it is a two part daily protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Atomized Amphotericin B in the evening
For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. He is using atomized nystantin for most of these patients.
Brewer is also using atomized mupirocin for patients he suspects has multiple antibiotic resistant staph. Generally these patients will do the Chelating Px in the morning, the Ampho B at least an hour from everything else, and the mupirocin in the evening. The protocol has been discussed extensively at http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/
I've actually done this protocal per Brewer. i wasn't sold it helped. He refused to get my sinuses tested, which also made me skeptical. just sharing. He did recommend I try the product Sinusoothe.
Posted by Ifish (Member # 43501) on :
quote:Originally posted by Anxiety soldier: when you use the nasal touch, and breath the medicine in, do you let it run back out your nose?
Also at the end do you blow your nose to get out all the crap or does that effect the treatment?
My doctor didn't give me then clearest of instructions.
Thanks
The medicine comes with specific instructions. Generally, yes, you let it run out your nose and eventually you will have to blow it.
Posted by Anxiety soldier (Member # 43885) on :
Anyone experienced balance or slight vision problems from this treatment. I feel like I'm losing the ground I just made up the last few months . might just be the die off Posted by Jane2904 (Member # 15917) on :
Up for anxiety soldier
Posted by RC1 (Member # 31923) on :
Since I started this thread I had a big relapse/ realization...
I had to quit the sinus treatment because I had gone off abx (only for a month) and relapsed Bart hard. I am really beginning to believe that Bart is a much bigger player in this illness that anyone realizes.
I think there are many DIFFERENT reasons for people staying sick. For some it may be Lyme, others Babs, mold, sinus mold, Protozoa, thyroid dysfunction, or the many other things that may have gone wrong with our bodies along the way. In addition to that there are many other opportunistic infections like CPN, or Mycoplasma, and viruses.
It's not only Lyme. In my case I had MANY things that were contributing to my illness. It took me four years to realize my biggest problem was Bart. In my case I treated all of the other things extensively (with the exception of the nasal fungus) which I had to quit after a few months.
For those of you who have Bart for sure, don't under treat it. The symptoms change so much through the process of treating it aggressively, that you would swear it's something else surfacing. Stick with it.
It takes a long time to treat Bart successfully, up to 9 months or even longer. There are symptoms that can be Bart even though they are assigned to other infection, like air hunger and sweating. These symptoms are now gone for me, from Bart treatment.
For the first time I can say that I believe I am going to get well. Not just 80-90% or so...
I've been back at treating Bart for 5 months so far, I still have symptoms but I am now getting better than I ever have from any other treatment. I still have a little ways to go, DO NOT UNDERESTIMATE THIS INFECTION!
Posted by TNT (Member # 42349) on :
I'm so glad for you RC!!! This has been my suspicion, too, for a while-- BLO anyways (which would include Brucella).
If you don't mind, what are you doing for your bart treatment?
Posted by RC1 (Member # 31923) on :
I posted it on your other thread TNT.
Posted by GretaM (Member # 40917) on :
Agree with RC1 and TNT re bart and bart lo being the root cause of many stubborn to get rid of symptoms. Sinusitis, irritated bladder, sore throat also symptoms of fungal infections.
Started sporonox for systemic fungal infection re real time labs results.
My doc said binders are crucial during any mold treatment protocol.
Wondering what binders you use for the nasal fungal treatment?
Also do you use l-glutathione to release mycotoxins from fatty tissues?
Thanks Greta
Posted by Anxiety soldier (Member # 43885) on :
Greta, Im interested also to see if anyone is on binders with the Nasal Fungal treatment.
My doctor didn't put me on any during this treatment. Any info would be great. Thanks
Posted by Ifish (Member # 43501) on :
We are about to hit the six month mark on the Brewer protocol. My last detailed report on progress was at the four month mark. What has stood out the most these last few weeks is the progress made by my youngest daughter who will turn 19 next month. My daughter has battled ear and sinus infections throughout her life. In January 2008, while in the 6th grade she underwent a balloon sinuplasty procedure which caused a permanent crash. She has never been able to return to school since then with the exception of a few weeks of part time school in 2010. For the last four years, she has not even been able to tutor at home.
My daughter has been continually doing one treatment or another since her crash. She was treated for lyme and coinfections for several years. In 2009 she did six months (seven days a week) of twice daily high dose IV antibiotics for lyme and coinfections. She has done many CFS related protocols, including protocols for mitochondrial dysfunction, immune boosters, detoxification regimens, IV and oral chelation therapies, IV vitamin C, Meyers cocktails, detox IVs, etc. Prior to starting the Brewer protocol she had gone through two different protocols for mold detoxification and treatment. None of these treatments have resulted in significant benefits
My daughter suffers from extreme fatigue and malaise. She has chronic sinusitis (requiring several surgeries and never ending antibiotics), sleep disturbances, mental fog, headaches and body pain. She has issues with her gut and bladder and suffers from nausea and anxiety.
By early 2014 her symptoms left her nearly home bound and able to do very little. She would often go a week without leaving our house (usually for doctor appointments). When she did leave the house it would require a great deal of planning and preparation. She would have to take anti-anxiety medication, anti-nausea medication, a cold pack, a vomit bag, among other things. She could only travel a few miles at a time.
I reported two months ago that my daughter was better but it was not a profound improvement and that she had small windows of feeling better. Since then the windows have become bigger and more and more frequent. She is now able to leave the house almost every day and often multiple times per day. Lately she has been able to leave the house without the aid of anti-nausea and anti-anxiety medications. She has obtained a learners permit and is practicing driving on most days.
My daughter has been going to restaurants, shopping, ice skating, and bike riding. She went on a 40 minute car trip with only one stop. All of her symptoms have improved, including the malaise, fatigue, anxiety, nausea, bladder and gut issues.
My daughter is now able to concentrate enough to read books more often, and seems to be busy all of the time. She has a very very long ways to go, but after trying everything under the sun for nearly 7 years she is now experiencing solid improvement.
Posted by GretaM (Member # 40917) on :
Yay! Fantastic news about your daughter's progress!!!!
Posted by dbpei (Member # 33574) on :
Yes! It is amazing news! Congratulations to you and your family on finding a treatment protocol that seems to have worked for you all!
I really appreciate your detailed report of your journey with this treatment - as you explain that it sometimes takes months for real improvement to begin.
This is important for those venturing this treatment to know so they don't abandon it before it has had a chance to work. Thank you so much!
Posted by Jane2904 (Member # 15917) on :
Thanks for posting.
I am so happy for your daughter!!! Congrats to you and your family!!
Posted by surprise (Member # 34987) on :
Brings me great joy to hear a child getting well-- thank you- and you are an amazing parent. God bless--
Posted by ukcarry (Member # 18147) on :
That is fantastic news. Hopefully, your daughter can now start to live a much more 'normal' life. Congratulations to you both for your persistence and determination.
Posted by Ifish (Member # 43501) on :
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.
I just started taking amphotericin B and mupirocin 2 x daily through atomizer. I am surprised at the thick stuff coming out of my sinuses throughout the day. Some has been blood smeared. I did not realize I had so much inflammation and gunk in there.
I feel stuff happening in my head and ears. Head feels burning and tingly. I have some dental and jawbone pain as well but it is not constant and it is tolerable. I notice my tinnitus is acting up more and I definitely feel a herx like effect, but it is not as bad as when I was on ABX.
Hoping we are on to a treatment that is going to help me get better! I will write again to update you in a few weeks.
Posted by CD57 (Member # 11749) on :
up
Posted by dbpei (Member # 33574) on :
I am into the second week of amphotericin and mupirocin treatment. I have rhinitis and am still expelling gunk from my sinuses at different times of the day. I feel a 'burning and sizzling sensation' throughout my head and sinuses with an increase in head pressure and tinnitus and electronic sounds.
It also feels like my jaw bones are being squeezed and tightened. This dental and jaw pain used to be on just one side, but now I am feeling it on both sides. I also feel a little nauseous and tired.
I have a very large, painful boil or cyst of some type on my chin. (staph?) Not sure if that is related but my complexion is usually good. I tested negative for MarCons last year, but perhaps the swab was not in deep enough.
Hopefully something big is happening. I did not do the Real Time Lab testing because my insurance would not cover any of it. I sure do wish I knew what we were fighting here - whether fungus, staph infection or both.
Posted by Jane2904 (Member # 15917) on :
Dbpei, thanks for the update.
Good luck !! Posted by lookup (Member # 44574) on :
"I have a very large, painful boil or cyst of some type on my chin. (staph?) "
It "could" be a good sign as when the body tries to heal itself it will try to push things to the skin (the safest place) to vent the dis-order.
Posted by CD57 (Member # 11749) on :
Exactly what I was thinking Lookup!
Posted by dbpei (Member # 33574) on :
My symptoms seem to be worsening. I have a lot of burning, sizzling sensations in my face and sinuses that travels to the side and other parts of my head and left eye. Recently, there are a few little painful bumps on my scalp near my forehead. I have also had some odd pain in my neck on that side.
I am still using mupirocin and amphotericin B twice a day with the atomizer. It is almost a month now. There are times of the day when I have to blow my nose and a lot of stuff comes out. It is usually clear, but sometimes there are some clots of blood or some other substance.
I think the cyst above my dental implant may be rupturing. I saw an oral surgeon yesterday, to see if he thinks it is time to take my dental implant out. He is going to remove it next week! Last year he didn't want to. But after suffering another year with these symptoms, he agrees with me that removing the implant could make me feel better. No guarantees though.
My LLND is away until a few days before the sugery . I will probably stop the atomizer treatment when my first month is complete. The oral surgeon says I will probably need a bone graft to repair the hole he expects I will have in my sinus after the implant is taken out.
I will write after the surgery and let you know if there are any changes. Good or bad!
Posted by thehause (Member # 21237) on :
Could be Rhinitis... be careful irritating your sinuses day in and day out.
Posted by dbpei (Member # 33574) on :
The Brewer protocol needs to be done at least a month. Most need to do it several months before seeing improvement. I talked to the pharmacist about my reaction to treatment and he seemed to think this was indicative of successful treatment. I sure hope that is the case. I am going to take a break though with my surgery coming up.
Posted by thehause (Member # 21237) on :
I did it for nearly a year without much change, so there's that too.
Posted by dbpei (Member # 33574) on :
Did it irritate your sinuses much? I just want to know whwther the stuff coming out is stuff that needs to get out or caused by the irritation to my sinuses Posted by thehause (Member # 21237) on :
It didn't at first - it burns of course and that is irritation - but over the course of time I got chronic irritation (Rhinitis), and it hasn't really calmed down since. It sucks.
The stuff coming out is likely mucus - mold will likely be invisible, if there is any at all.
Posted by dbpei (Member # 33574) on :
thehause, so sorry to hear this. Do you use any type of netipot with a saline solution to help? I called the pharmacist and he strongly recommended this. It would probably help, with or without the atomizer treatment.
Posted by thehause (Member # 21237) on :
I didn't use Netipot brand, but another brand of saline solution rinse. I also used Sinusoothe at times and SinuOregeno - they maybe helped a little.
Basically, it takes steroids to calm down Rhinitis and that may or may not last. And it is it's own bag of worms regarding immune system.
Brewer didn't want to get a culture of my sinuses, which I thought was weird since it would be potential confirmation of a theory. I think that the scientific method hasn't been applied to everything I've been through - perhaps to avoid criticism as times - and that is disappointing, as you can imagine.
Hope that helps.
Posted by dbpei (Member # 33574) on :
Yes. It's too bad that he didn't take a culture. Do you think the lab below might be of help to you? I emailed them with questions and they got back to me promptly.
Not really. What I am talking about is cutting me open (or getting highly invasive) and sampling the innards of my sinuses. That needs to be done in a very sterile environment.
I know this lab may try to do some of that, but it seems a little hard to say an oral sample (I don't know which one you had in mind specifically), wouldn't contain contaminants. Everyday things have fungus on them. But who knows.
![[Smile]](smile.gif)
I know it will probably be back to herxing once I start back on the protocol...but I will enjoy today ![[Roll Eyes]](rolleyes.gif)
![[Frown]](frown.gif)