posted
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... Posts: 845 | From Northeast | Registered: May 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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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 Posts: 486 | From USA | Registered: Jan 2012
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posted
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...
Posts: 845 | From Northeast | Registered: May 2011
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posted
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!
Posts: 486 | From USA | Registered: Jan 2012
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posted
Birdie, how did your CAT scan turn out? Did you end up having a fungal ball? Did the scan show anything at all?
Posts: 845 | From Northeast | Registered: May 2011
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
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.
Posts: 845 | From Northeast | Registered: May 2011
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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!
Posts: 486 | From USA | Registered: Jan 2012
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posted
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.
Posts: 486 | From USA | Registered: Jan 2012
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posted
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!
Posts: 845 | From Northeast | Registered: May 2011
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posted
RC1, do you think systemic enzymes would work to get the biofilms or should I do the EDTA?
Posts: 486 | From USA | Registered: Jan 2012
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posted
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.
Posts: 486 | From USA | Registered: Jan 2012
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posted
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...
Posts: 845 | From Northeast | Registered: May 2011
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posted
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.
Posts: 486 | From USA | Registered: Jan 2012
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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.
posted
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.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I'd like to know what 'herx' type symptoms people are experiencing with this Dr. Brewer type protocol…..
thanks!
Posts: 322 | From Venice, CA | Registered: Sep 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
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.
Posts: 845 | From Northeast | Registered: May 2011
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Kudzuslipper
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Member # 31915
posted
What exactly are you doing RC1?
Posts: 1728 | From USA | Registered: May 2011
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posted
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%.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
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...
Posts: 845 | From Northeast | Registered: May 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
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.
Posts: 18 | From Maine | Registered: Dec 2013
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posted
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.
Posts: 141 | From East Coast USA | Registered: Sep 2010
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posted
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/Posts: 845 | From Northeast | Registered: May 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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?
Posts: 3528 | From US | Registered: Apr 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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.
Posts: 2387 | From New England | Registered: Aug 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
CD57, if you are in northern CA (I think you are) PM me if you want to go further with it.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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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.
Posts: 538 | From kentucky | Registered: Nov 2011
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
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.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
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)
Posts: 322 | From Venice, CA | Registered: Sep 2008
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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.
Posts: 2387 | From New England | Registered: Aug 2011
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Does anyone know if the chelating px agent contains sulfites?
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
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...
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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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.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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posted
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.
Posts: 845 | From Northeast | Registered: May 2011
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Thanks for the update RC.
Good luck at your appt.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
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.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
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.
Posts: 845 | From Northeast | Registered: May 2011
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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.
posted
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.
Posts: 845 | From Northeast | Registered: May 2011
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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)
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