How long does he have you on the mupericin for? My doc wouldn't give it to me. He gave me a different antibiotic because I have a history of strep and wanted to go after strep and staph. I need to get started on it. Tomorrow is 2 weeks on ampho/cpx with no real side effects so prob time to get started. Good luck to you!
Detection of Mycotoxins in Patients with CFS
- Thread starter slayadragon
- Start date
@Akhess01, I don't know how long on the Mupericin, I just go back and check in with him. Sounds like others have said a month. Glad the ampho is going well for you, I never want to go near that stuff again!
@Ifish, my new doctor had mentioned that Brewer said the Nystatin users were reportedly getting better, but that he didn't have any follow up mycotoxin reports yet from them to see if their numbers are lowered. If you happen to find out if/when he does, I'd appreciate it. Thank you again for all the info you have shared, hope you're family is still improving.
@Ifish, my new doctor had mentioned that Brewer said the Nystatin users were reportedly getting better, but that he didn't have any follow up mycotoxin reports yet from them to see if their numbers are lowered. If you happen to find out if/when he does, I'd appreciate it. Thank you again for all the info you have shared, hope you're family is still improving.
My husband is on Nystatin, and yes, Brewer reports that patients are getting better. We haven't retested at all. My husband has been on it since May. It's been a roller coaster for him, but recently he had the best day he's had in years. Of course he pushed it and felt terrible for the next week. Ha! Thankfully today is a good day again, and we are hopeful that more good days are coming.
@JCamp I saw your post! Sounds like you overdid it with the sauna. The sauna forces your tissues to release stored toxins that may be really built up in there. When they are released they go into the rest of your system and float around, making you feel worse. Sounds like your extra long sauna overdosed you on them. Take some binders (CSM or activated charcoal or whatever you use) next time you sauna so that the mycotoxins get eliminated from you asap. It's why I've backed off on saunas now that I'm doing the treatment, I don't want my body to feel overwhelmed and crash harder. I might start doing them again when I'm on the flip-side and feeling better after a few months of treatment, to get any last toxins out of my muscles. Hope you are feeling better by now.
Thanks @skii! I deleted the post because I just couldn't wrap my head around what was happening. I also wanted to stick to facts and not alarm anyone.
If it was just the detox then I'm not sure why the wooden "nicer" saunas didn't have the same effect. The home tent sauna felt MUCH more powerful.
There was also a trauma effect on my nervous system -- it seemed to circulate my blood and provide oxygen at rates I am not used to. It felt like I had gone for a run or received a deep tissue massage in that way. Again, the wooden sauna last week did not do this.
No matter the effect, I'm definitely going down to 10 minutes at a time for now and building up. I started feeling better after 36 hours. Phew. It was scary.
One tmi treatment note: I have a lot of brown clumps and specks coming out of my sinuses now (12 weeks on daily ampho/chelating px). I spoke to asl pharmacy and he said that was "excellent". Still no physical effects but definitely more productive Kleenex behavior....
Yes I have csm and charcoal. I've never seen a difference with them. Electrolyte packs every few hours while lying flat in a dark, silent room seemed to help this sauna recovery.
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The oral antibiotics have so far failed to make any long lasting significant improvement - the initial improvement lapsed quite quickly (although it does still seem like there has been some improvement in a range of CFS symtpoms, but my sinuses almost always feel yucky). They have suggested that I see an allergy specialist who can organise a Staphylococcus desensitization treatment (I think like a vaccine) that supposedly trains your immune system to tolerate the Staph. Their thoughts is that it is the immune system reacting to Staphylococcus superantigen.
This is interesting because there was some interest in and some people treating ME/CFS with a Staphylococcus Vaccine and even a thread on it here. I think the guys using the Staph vaccine were under the impression it was helping their immune system fight a virus but it does make me wonder if comes back to sinus biofilms.
http://forums.phoenixrising.me/index.php?threads/staph-vaccine-to-treat-cfs.3788/
But then is that a good idea to desensitize our bodies into carrying a large colony of Staph around for the rest of our lives. For instance if I kiss a baby does that mean I potentially transmit harmful microbes into another person? I would rather try and remove it.
The ENT did agree that it is probably biofilms and I did bring up intranasal antibiotics but it seems like something that Australia just doesn't have the treatments made available for it.
You guys are lucky to have access to these things - it does seem like there is a much wider range of treatments available in the USA than there is here. Maybe I will end up having to travel to see this Dr Brewer if I can't make any further progress here.
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Some of us are carriers of staph if I recall from my readings around the topic. Did your doctors put you on anything to bust up the biofilms? The antibiotics can't penetrate and kill the infection otherwise. Initially I could not tolerate the chelating px (now I can) but my dr put me on saline atomized with a drop of idione.That you can get over the counter. Also the Interfase Plus enzyme is a bio film buster - I bought that on Amazon. I have read that some people have used Johnson's baby shampoo to great effect as a nasal rinse as that contains the chelating agent. Google it.
What helped me was the BEG spray and oral antibiotic together and THEN once the MARCONS were clear was I able to tolerate the ampho B and chelating agent.
I also did a homeopathic of staph ( went to a classical trained homeopath) as well as receive certain energy frequencies for toxic burdens to help denature the infection. I haven't fought this battle with western medicine alone on the physical body, I have hit it on the energetic and mental aspects too. Good luck Redaxe.
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My new doctor says it's now known that everyone has staph in the sinuses. Most of us might have greater colonization though.
How many times a day are you guys doing the Nystatin and Mupericin? I'm at 1x a day for each so far, plus 2x a day on the atomized steroid. But I'm supposed to increase to 2x a day for each, plus a sinus rinse. 7 nasal treatments a day plus my vitamins plus charcoal and CSM as often as possible... man it's a lot to remember and juggle.
How many times a day are you guys doing the Nystatin and Mupericin? I'm at 1x a day for each so far, plus 2x a day on the atomized steroid. But I'm supposed to increase to 2x a day for each, plus a sinus rinse. 7 nasal treatments a day plus my vitamins plus charcoal and CSM as often as possible... man it's a lot to remember and juggle.
That is a lot!
I do CSM , 5 capsules charcoal, 1 tablespoon bentonite twice a day altogether- 90 mins away from other meds and vits.
I do the chelating px in the am and the ampho B in the pm.
Hmmm I'm still sceptical of that. You would have have to take nasal/sinus swabs from remote indigenous tribes still living in the jungles of the Amazon or the PNG and culture them.
Diet is linked to our microbiome and our western diets have changed significantly from our ancestor hunter/gatherers and furthermore modern use of antibiotics has the potential to change this even further.
If someone can show me a paper demonstrating that Staph aureus is found in remote hunter/gatherer indigenous tribes at rates equal to people living in modern cities than I'll be convinced but otherwise I have my doubts.
This isn't an exhaustive list I am sure but I have had:
rashes - esp. on back of hands
nausea
headaches
flu like feeling- muscle aches etc
fatigue
appetite decrease
interrupted sleep
low blood pressure
..........
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Forebearance
Senior Member
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Oh yeah! I've been having a rash on my torso.
I seem to be tolerating the chelating px and ampho b much better this time around and have worked up to a daily dose. I am sure it is because we cleared up the MARCONS with 2 months of BEG and rifampin ( halted ampho b treatment after unbearable nasal congestion during this time then restarted after nasal swab came back clean and BEG/rifampin were done with.) I am going to do a retest this week of the mycotoxin urine test. I am very curious to see what comes back. My tricothecene levels were high at 0.88 ppb
I am also tolerating the CSM, activated charcoal and clay pretty well. I have also been on oral nystatin then switched to diflucan for 3 months for candida- will be doing a retest of stool to see if that has decreased. It was dividing candida before but did go down from a 2 to 1. Treating these co-infections is an important part of my health picture. Dealing with teeth and gum issues were also important - especially removing the mercury fillings- still dealing with gum inflammation on and off. Have others been treated for candida successfully or other co-infections?
Working on gut health too with low histamine probitoics.... all inter-related - fascinating really.
I am also tolerating the CSM, activated charcoal and clay pretty well. I have also been on oral nystatin then switched to diflucan for 3 months for candida- will be doing a retest of stool to see if that has decreased. It was dividing candida before but did go down from a 2 to 1. Treating these co-infections is an important part of my health picture. Dealing with teeth and gum issues were also important - especially removing the mercury fillings- still dealing with gum inflammation on and off. Have others been treated for candida successfully or other co-infections?
Working on gut health too with low histamine probitoics.... all inter-related - fascinating really.
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Since you all were just discussing a herx- anyone willing to list herx symptoms specific to the brewer protocol? I feel like I'm going crazy. I'm sweating profusely and experiencing anxiety in a way that is much different than what I am used to. I know it has been said that Brewer does not recommend binders like csm, charcoal or clay but if I can find a place to fit them in (hard to do around other meds) I'm considering giving them a try. Any advice or experience is appreciated
@Akhess01 sound right on. I'm getting anxiety from the die-off, it's literally a physical feeling, like a big knot in my chest then coupled with feeling overwhelmed with regular tasks. I am *not* an anxious person, at all, never have been. One time after 3 days after the ampho B I have a huge anxiety attack, that started with a headache then muscle pain peaking with the anxiety attack. My doctor said that as the toxins cross the blood-brain barrier, your brain produces stress hormones in response, which then showed itself as an anxiety attack.
I know Brewer's new thing is not to worry about output, but I will definitely keep up on binders! Keeping on top of the CSM and especially charcoal was the only thing that took the anxiety away. And I completely understand, I'm juggling so many things for treatment right now. Also keeping on top of all my supplements can't hurt, either.
Speaking of which, it's ok to take CSM and charcoal at the same time? I thought it wasn't but someone here mentioned it and my doc wrote that on my script list.
I know Brewer's new thing is not to worry about output, but I will definitely keep up on binders! Keeping on top of the CSM and especially charcoal was the only thing that took the anxiety away. And I completely understand, I'm juggling so many things for treatment right now. Also keeping on top of all my supplements can't hurt, either.
Speaking of which, it's ok to take CSM and charcoal at the same time? I thought it wasn't but someone here mentioned it and my doc wrote that on my script list.