Detection of Mycotoxins in Patients with CFS

I

Ifish

Senior Member
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182
It appears Brewer's office has worked things out with a local compounding pharmacy and the medications should soon be available, perhaps as early as next week. I plan to wait until next week and submit a request for refills.
 
S

switters

Messages
29
Ifish said:
It appears Brewer's office has worked things out with a local compounding pharmacy and the medications should soon be available, perhaps as early as next week. I plan to wait until next week and submit a request for refills.
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Will they be making their products available to patients outside of Brewer's practice?
 
M

mamakate

Messages
20
Roxanne Martin said:
Ok, my Lyme dr. just said today that Dr. Brewer has a share in Real Time Labs. I am worried he is merely padding his pockets...It doesn't help I don't know him at all...:cautious: My Lyme Dr. hasn't written it all off but is very wary of Real Time Labs.

My Lyme Dr. said though some of his patients think it helps them, some have been on it for years and does nothing.

Can anyone vouch for this info about Brewer? BTW, I am not giving up on it yet! I came this far...;)
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Our experience with Brewer is that he really cares about his patients and wants to help them. And I really don't think he's padding his pockets because a few times I've asked about retesting mycotoxin levels and he told us we shouldn't waste our money at this point. Eventually he said we may want to retest, but so far it wouldn't make sense to do so, so we haven't.
 
M

mamakate

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20
switters said:
Just checked back on this thread. It seems that Ifish and is family are the only ones here that have experienced noticeable/significant improvement on the protocol. Is that correct?
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My husband has experienced significant improvement on this protocol as well, but it has taken a lot time. This is a long journey for us, but we feel like we are on the right track as he is doing better than he has in years. That's not to say it isn't rocky, and it certainly is slow, and we've made a lot of mistakes along the way. It takes a long time to tweak the treatment to figure out what your body can handle. My husband is a VERY slow detoxer, we've found.
 
I

Ifish

Senior Member
Messages
182
mamakate said:
Our experience with Brewer is that he really cares about his patients and wants to help them. And I really don't think he's padding his pockets because a few times I've asked about retesting mycotoxin levels and he told us we shouldn't waste our money at this point. Eventually he said we may want to retest, but so far it wouldn't make sense to do so, so we haven't.
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I should also point out that RTL was in business long before Brewer started testing his patients, so it seems pretty unlikely he has an ownership interest.

Brewer has discouraged us from retesting, and in fact we all went about 2 1/2 to three years between tests. Even then we decided on our own to do the tests - he never suggested it.

I think it would be worthwhile to ask the lyme doctor why he thinks Brewer has an ownership interest in RTL. Has he seen any ownership documents? Or is it just rumor? It seems very unprofessional to make this type of comment.

I have found lyme doctors and patients to be very resistant to the idea that mold may be the problem. After all, the lyme doctors have been telling patients for years that chronic lyme is the reason for their illness. It would be pretty difficult to do an about face and admit to treating so many patients for something they didn't have.
 
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Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
mamakate said:
My husband has experienced significant improvement on this protocol as well, but it has taken a lot time. This is a long journey for us, but we feel like we are on the right track as he is doing better than he has in years. That's not to say it isn't rocky, and it certainly is slow, and we've made a lot of mistakes along the way. It takes a long time to tweak the treatment to figure out what your body can handle. My husband is a VERY slow detoxer, we've found.
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This is good to hear, @mamakate. I am also a very slow detoxer. But I figure it's better to be going in the right direction very slowly than in some other direction. I hope your husband feels lots better eventually!
 
S

Skiii

Senior Member
Messages
122
Who here has had ENT consults or surgery, directly related to fungal sinusitis? If so could you tell us about it, or PM me?
 
R

redaxe

Senior Member
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230
Skiii said:
Who here has had ENT consults or surgery, directly related to fungal sinusitis? If so could you tell us about it, or PM me?
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I did after I noticed I had sinusitis like symptoms about a year ago. If you trawl through this thread you'll see that I prescribed to the nasal fungal theory for a while but in the end it was a dead-end for me.
I did however get some results from an ENT. A CT scan showed muscosal thickening indicating sinusitis but no problems with physical blockages in the sinuses - so bone cavities were normal size. If you have frequent sinusitis this might be a good thing to rule out.

None of the tests I had showed any evidence of a fungal infection - the ENT was certain that it would show up on the CT scan and the swabs turned up negative for fungal growth too. The lab was instructed to let the plates incubate for weeks just be sure.
The swabs done that showed a high colonisation of Staph aureus. Not the superbug variety fortunately but the ENT suggested that the domination of Staph in the nose might be causing a over-reactive immune response.

Some people here have suggested that the superantigens produced by staph might be aggravating the immune system. While it probably isn't the cause of ME/CFS if a staph overgrowth is making you feel worse, it might be worth treating.

I took a few courses of antibiotics that the Staph was sensitive to and that helped quite a bit but it didn't completely clear it up. I also started eating more fermented vegetables, fermented dairy (sheep/goats yoghurt and kefir). I also went further than this and snorted some of my home-made kefir with certain probiotic bacteria into my nose after I did a saline rinse with a neti pot to clear mucous out of my sinuses so the probiotics would be able to adhere to my sinuses. Since then I haven't had any major issues with sinuses and it seems like my allergies are less than they used to be to.

Some scientists have suggested links between microbial diversity in the nose & sinus and allergies/sinusitis. It is something that I think has been overlooked until now but there is more and more interest in finding probiotic bacteria strains that either kill or pacify the more aggressive and harmful pathogenic bacteria that might have colonised our guts and other cavities.
I have no doubt that one day we will be able to buy sinus nasal spray pumps with probiotic strains :)

But to answer your question you can mention to an ENT that you have had long-term sinusitis and ask for a CT scan and swabs etc... You could mention the possibility of a fungal infection but it's best to let the ENT doctor do the tests and for the the test results speak for themselves. I'd think that if a fungal infection in the sinuses was that significant to be the root cause of your ME/CFS then there should be some evidence that it is there.
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
I recently transferred my prescription for Nystatin to Dr. Brewer's new pharmacy of choice.
Here are some notes about it:
The crumbs of Nystatin look the same. But they are apparently more concentrated, because the capsule size is smaller. Sure enough, I overdosed when I took my usual amount. So I will modify the dose.
The pharmacy doesn't automatically include saline solution with your prescription.
The mixing cup they provide doesn't have a lid. It seems like it would be difficult to use.
They don't put an expiration date on the pill bottle.
On the phone they said that their Nystatin is good for six months.
The previous pharmacy, TAG, said theirs was good for three months. They put an expiration date on the bottle, along with a sticker saying "do not refrigerate".

So basically it looks workable. Except I think I am going to request that they start putting an expiration date sticker on the pill bottle the next time I get a refill. And luckily I still have a lot of saline solution and mixing bottles from TAG.
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
Am I imagining things, or does this new brand of Nystatin cause a bad taste in one's mouth?
Has anyone else noticed this with the Nystatin from Albers pharmacy in Kansas City?

I wonder if there are different species of Nystatin.
I can't imagine taking this Nystatin for years if it's going to have this yucky side effect. Geez.

Maybe I'll have to try the Nystatin from Woodland Hills pharmacy instead.
 
Forebearance

Forebearance

Senior Member
Messages
568
Location
Great Plains, US
After three doses of the Nystatin from Albers Pharmacy, I feel so terrible that I am going to transfer my prescription to Woodland Hills and try their Nystatin instead.

Whatever kind of bacteria the Albers pharmacy is using to make their Nystatin, it does not feel like friendly bacteria to me. Besides the bad taste in my mouth it seems to be mixed inconsistently, so you can't count on each granule of it being the same strength. And I have just felt really toxic and sick.

Man, I miss the ASL/TAG pharmacy and their friendly bacteria!
 
I

Ifish

Senior Member
Messages
182
October marks 18 months since we started the Brewer protocol.

We continue to make progress. My youngest daughter was able to start a GED program in mid-August. She had tried to take a Juco class in June, but really wasn’t well enough to do it, so it was decided she wouldn’t try. But she has improved substantially since then.

The class is three hours a day, four days a week and she has never missed, even on her worst days.

Prior to starting the Brewer protocol my daughter was unable to do any school work at all. Even if she could, she was not well enough to be transported to a classroom.

My daughter has been out of school for 7 ½ years. In 2010 she was able to attend part time for a few weeks, but had to drop out due to her illness. Since then she has not been able to attend school at all or even tutor at home.

She passed the GED program at the end of September after only about 6 weeks of classes.

What really stands out here is the fact she has experienced a return of her cognitive abilities, more so that I could have hoped for.

She is now in the process of sorting out what to do next. I think the most likely scenario will be to enroll in some college classes at Juco next semester.

My daughter still has a lot to overcome with her physical and mental health, but she is really making great progress. If things go well for her and if she continues to improve heath wise, I believe leaving home for college next fall is a real possibility.

Beyond school, she continues to add activities in terms of length and frequency. I see less and less of her which is a good thing.

So at 18 months things are still improving. Slow and steady wins the race!
 
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