Detection of Mycotoxins in Patients with CFS

Thanks, cigana, I will give that a try.
I still think Dr. Brewer's theory is very plausible.
And something must be going on in my sinuses, because they hurt and they look inflamed in every thermogram I've had done.

 

So I've been on Cholestyramine for about a month (I really picked up after 3 weeks) then I started Sporanox & a herbal treatment from my doctor to kill the mold and after about a couple weeks of that it feels like I've gone down hill again.

I've noticed a resurgence of a lot of symptoms; bad depression, dizziness, poor cognition, loss of circadian rhtyhm, static shocks, suppressed appetite..... basically the whole package, although no way near as bad as it has been.

Could that be a herxheimer reaction? The only doubt I have is that normally a herx should occur real soon after you start the antifungals & herbs right? This seemed to take about 2 weeks before it got worse. I really suspect my house is causing the problems so I definitely need to get that looked at.
But do others experience these symptoms especially depression when you start the 'mold killing' protocol. It would make sense if the fungal cells are dying and releasing toxins.

 

You can get it on ebay without a prescription, it's manufactured by an Italian company called Flaem, product is called Rhino Clear Mobile.

See for instance: http://www.ebay.co.uk/itm/Flaem-Rhi...iature_Benessere&hash=item2590617c19#shpCntId

 

Thanks, psz!
I asked my doctor if I could try a little Nystatin and just see if it does anything for me, and she said yes!
So I'm getting a NasaTouch machine after all. I think it helped that Nystatin is not such a "scary" medicine.

How is everyone doing?
I'm sorry I don't know the answer to your question, redaxe.

 

Glad you can try it, Forebearance.

After the horrible 36-hour-can't-breathe-out-of-my-nose-someone-put-me-out-of-my-misery episode, my doctor recommended just cutting way back on the amphoB, not using a whole ampoule. I was scared (and waited until my kids are back in school), but did two good sniffs on each side the other day- it was tolerable! Doing a second dose today. So I have hope that I might be able to get through this, albeit slowly.

Looking forward to any Brewer updates next time you go in, iFish.
How is everyone else doing?

 

Skiii,
Interesting you should ask me this since I just saw him yesterday. The one (and only) good thing about having several ill family members is that we can stagger our visits. So instead of seeing him once every six months I can tag along and see him once every two months.

It seems things are clarifying more as he goes along. First, good news for people on nystantin. It is becoming more and more apparent that nystantin is effective as he has had many nystanton patients suffering from significant die off reactions. He now thinks that some of the patients that quit amphoB because they could not tolerate it were not reacting to the medication, but just couldn't tolerate the die off.

The treatment is clearly a long term proposition. Some patients go well beyond six months before starting to improve. For some the improvement is very up and down. For others it is a very slow but steady improvement. Patients are not able to get off the medications without declining. He had a patient that did the mycotoxin test five times. Every time this patient quit the medications the mycotoxin levels rose.

He does not feel it is necessary for patients to ever do the Chelating Px and AmphoB more than once per day, but if they have to go to a lower dose they need to work up to once per day on each. Additional dosing does not seem to help and he feels the sinuses need time to rebound from treatment.

He feel treatment with mupirocin is helpful for some patients but the maximum benefit is reached in a few weeks. He sees no need for more than four weeks treatment.

So the treatment is now pretty standard. Chelating Px once per day and Ampho B once per day. Cut back if necessary. Go to Nystantin if necessary. Treat for a month with mupirocin if resistant staph is suspected. Once you are on the daily treatment, stay with it indefinitely. Hopefully eventually there would be a reduced dosage or even a complete remission without any medication but only time will tell.

Brewer plans to publish his data, hopefully by the end of the year. He will give a presentation at the ILADS annual meeting in October. He gave a presentation last year and if you buy from ILADS the conference dvd you can see it. I think they will probably offer a dvd again this year.

Brewer will also present at the American Academy of Anti-Aging Medicine annual meeting in December.

 

Thank you so much for the update, iFish. It's so great to get updates. Are you and your family continuing to feel better?

 

And sorry, I left out that I am also using Nasalcrom and now a steroid spray to help keep the inflammation down.

 

Do you know the dosage of Nystatin that Brewer recommends?
Thanks

 

My youngest daughter had really started to show clear improvement. She was doing many things she had not been doing previously. Unfortunately, fall allergy season started and we all came down sinus infections secondary to seasonal allergy. It is a bigger bummer to be set back after feeling better, but it will be temporary. Now that we have a good long term program to treat the mold colonization we are working toward long term solutions to reduce acute bacterial infections.

 

I don't know. ASL pharmacy would have this information. The individual dose comes in a capsule which is mixed in a saline solution. The quantity is much higher than the amphoB and it takes much longer to atomize.

 

Ifish, has he settled on nystatin once or twice a day until moving on to ampho B?

Thank you.

 

@Ifish

Are the nasal sprays that Dr. Brewer uses and the BEG spray that Dr. Shoemaker uses basically the same thing?

 

I have a question- does anyone know why FIR sauna is recommended? Because it's quicker and therefore easier? All I have access to right now is a regular sauna, as well as running a very hot bath and staying in it while I sweat- which I assume is still doing good things as far as detoxification is concerned, and releasing mycotoxins from tissues.

 

No. There is some overlap in that the BEG spray has EDTA and mupirocin in it, but the comparison ends there. The BEG spray has nothing in it to kill mold.

 

No, that isn't quite right. Brewer generally starts people on the amphoB and keeps them on it if they can tolerate it. He doesn't put people on nystatin otherwise. If the data eventually shows nystantin to be equally effective I suppose he might give patients an option to start out on nystantin. The biggest disadvantage of nystantin is that it take alot longer to administer.

 

Looks like I'm one who can't tolerate Ampho B. I pushed it which made it worse than it should have been. We are moving to itraconizole, not for Brewer Protocol, but to address a fungus found on PCR swab that has to be addressed. From what I've understood so far, Brewer has tried itraconizole and has not found it every helpful for his purposes. Is that correct? If so, it seems in my case, once I complete however many rounds ENT wants me to use the itraconizole, that we would switch to nystatin. And really sorry to ask... that would be one time a day just like the ampho b? Is he still determining if patients need to try to switch over to ampho b after some time on nystatin?

Also.. I thought I read in another post you made that Brewer likes to work up to twice a day if possible with ampho b. Did I read that wrong?

Thank you so so very much for sharing this info!!

 

Soulfeast,
It all boils down to a simple protocol:
1. Chelating Px in the a.m.
2. AmphoB in the p.m.

Here are the modifiers:
1. Patients reduce dosage in the event the die off is too great. Usually down to every other day or every third day. Reducing the amount is also an option. Brewer had some patients work up to twice per day on the on the AmphoB but now does not feel that doing either the AmphoB or Chelating Px more that once a day is helpful. He feels doing the AmphoB more than once per day is too hard on the nose.
2. Patients that do not tolerate the AmphoB are switched to Nystantin. Patients need to distinguish between die off symptoms vs. intolerance of the medicine.
3. Brewer puts some patients in mupirocin for up to a month if he suspects antibiotic resistant staph. I don't know what his criteria will end up being. Four members of our family did the mupirocin. It seemed to help two of us and didn't seem to help the other two.

The last time Brewer mentioned itraconizole was quite a while ago. He had a few patients on it. At the time he did not feel it would be as effective as AmphoB or Nystantin.

 

Just to play devils advocate (I really like the theory and think its the cause of my issues)

What if people with CFS immune system is overburdened and can't detoxify so that they are exposed to minute sources of mold like everyone else except they can't detoxify as well?

 

Detoxification supplements/therapies should be implemented. Bile acid sequestrants (Cholestyramine, Welchol), Sauna, methylation supps, etc.