Detection of Mycotoxins in Patients with CFS

[Forebearance]

Yay! The Woodland Hills pharmacy is owned by the guy who used to make the Nystatin for ASL/TAG.
Whew. It will be a huge relief to get some friendly Nystatin again.

I want to post appreciation for the pharmacist named Steve at the Woodland Hills pharmacy, who is working to make their Nystatin capsules the same as the ones the TAG pharmacy used to make.

It turns out that the difference was the blending powder that the TAG pharmacy used with the Nystatin.
Plain Nystatin is just plain yucky. It's bitter and makes my tongue go numb. But if you put enough of the "special blending powder" with it, it becomes palatable.

I think it's important for this treatment to be palatable, because some of us may need to be on it for several years.
Plus, there seems to be something in this blending powder that makes my muscles stop hurting for a short time. I guess it's probably some kind of sugar.

To quote Mary Poppins: "A spoonful of sugar makes the medicine go down."

 

[Little Bluestem]

My insurance won't pay for compounded capsules, so I have a bottle of plain Nystatin powder. Does anyone have any suggestions on how I should use it?

 

[Forebearance]

My insurance won't pay for compounded capsules, so I have a bottle of plain Nystatin powder. Does anyone have any suggestions on how I should use it?

Is your Nystatin intended for use in the sinuses? I hope so.

When I was using the plain Nystatin powder from Albers pharmacy, I just mixed it with 5 ml saline solution as the old instructions said to do. And then I areosolized it with the Nasa Touch machine.

Maybe you won't notice the bitter/numb issues that I had. I am more sensitive to stuff than most people, and I haven't heard anyone else complaining about it.

 

[Little Bluestem]

I now have compounding Nystatin. Originally they got in topical Nystatin and they had to exchange it.

Does it mix easily with water? Can I just stir it in or will I have shake it or something?

I'm relieved to hear that the bitter/numb effects are not common, given the length if time this has to be used.

 

[Forebearance]

The Nystatin I've used has mixed easily with saline solution. I do shake it in a little mixing jar. The TAG pharmacy used to supply those, with a convenient 5ml mark on them. Best wishes on your trial of this!

 

[aquariusgirl]

folks, I need to get a replacement for the plastic container that sits on the nasa touch + accessories.....any ideas where I can get these?

I called the former tag pharmacy ..they want me to buy a whole new unit !

Thanks

 

[Forebearance]

Thanks to aquariusgirl noticing it, I see that the TAG and ASL pharmacies are back in business.
They are doing business now as imprimis Rx. It looks like they were acquired by the imprimis company.

 

[Skiii]

I take it Dr. Brewer didn't present at the recent ILADS conference? Does anyone know what the plans are for the follow-up paper he was going to release?

Any patients of his have any updates?

 

[foxy loxy]

I am not a patient of Brewer, but I have been doing his protocol for a year. I recently stopped to see what would happen. I must say that I fell no different off it than I did on it. I plan to go back on it using Woodland Hills as my pharmacy. It is hard to say if the protocol did anything as I did a lot of med switching and recently am doing mild hyperbaric. (which appears to possibly be helping me more than anything I have EVER tried)

My gut feeling is that it didn't do much personally for me and I never notice any symptom change or improvement when I tamper with the nasal meds. I have been VERY consistent with it too. I am getting discouraged and am planning to retest my mycotoxin levels soon.... and go from there I guess.

My Lyme Dr. did tell me last time that he would try to get those mycotoxins out if he were me so maybe he isn't as "against" RealTime Labs as he first initially told me they were rip offs.

I guess breathing in oxygen after swishing all that meds up my nose won't cause any adverse reaction... YIKES!! If you don't hear from me.... I died....

 

[SOCS]

Is this true? The part that almost anyone will test positive for at least one mycotoxin in their urine?

I tested positive for trichothecenes, but i was under the impression that the results were pretty much accepted as "valid." Is it true that even well people would test positive for one of them?

When I asked RTL about this at the time of testing they basically said that even foods considered to be "very moldy" like peanut butter wouldn't cause a readable level of mycotoxins in the urine.

Really would like clarification on this.. want to make sure I am fighting against the right problem

Skill, What have you found to bind the trichothecens? That's what showed up in my son's urine at RTL. He had done about 6 months of cholestryramine faithfully 3-4 x day and got worse (according to his MRI/NQ and interpreted by Dr. S himself). So all I can assume is that we were using the wrong binder. It's hard to find info on what binders to use for what mycotoxins!

 

[SOCS]

Oops, guess I was replying to Mallen, not Skill. Sorry - new around these parts!

 

[Gingergrrl]

Skill, What have you found to bind the trichothecens? That's what showed up in my son's urine at RTL. He had done about 6 months of cholestryramine faithfully 3-4 x day and got worse (according to his MRI/NQ and interpreted by Dr. S himself). So all I can assume is that we were using the wrong binder. It's hard to find info on what binders to use for what mycotoxins!

I know you were not addressing this to me but my mold doc said that any binder that I can tolerate is okay and right now I am using a mixture of oats, oat bran, apply pectin & apples b/c I am allergic or do not tolerate many traditional binders. I had severe tricothecene exposure and our prior home tested positive for 19 kinds of mold with off the charts high levels of stachybotrys. There are sites that recommend certain binders for certain mycotoxins but I got the sense from my doc that any binder you tolerate is okay.

 

[SOCS]

Gingergrrl,
Thanks for the info. Please keep us posted on any results you see/feel. NOW, I'm trying to figure out which binders have to be taken away from food or other supplements. What I've gleaned so far is that charcoal absorbs everything, but zeolite and clays are a different story. They are charged particles w/ cagelike structures that both adsorb and absorb toxins, which are charged oppositely (I forget which is positive and which negative, but they attract each other.) Hence, they can be taken WITH or without food and supplements.....GLORY BE!!! (Finding an empty stomach, away from other things, is so hard w/ all the requirements of all the pills.) I'm 'unearthing' (had to do it) info on silica and clay that I'll share when I know more.
SOCS

 

[Gingergrrl]

Gingergrrl, Thanks for the info. Please keep us posted on any results you see/feel.

Thanks @SOCS and I definitely will. It's still too early with this protocol to know how it will all turn out but I am hopeful.

NOW, I'm trying to figure out which binders have to be taken away from food or other supplements. What I've gleaned so far is that charcoal absorbs everything, but zeolite and clays are a different story.

My understanding is that both charcoal and clay (at least Bentonite Clay) have to be taken 90 min away from food and meds in both directions.

(Finding an empty stomach, away from other things, is so hard w/ all the requirements of all the pills.)

My problem was even worse b/c I have to take my MCAS meds 30 min before eating food so the binders could have potentially triggered an anaphylactic reaction but my meds to counteract it could potentially not work. For me, this is another reason why we went with less hardcore binders like oats, apple pectin, etc that have no affect on other meds or food.

 

[Gingergrrl]

I use Atarax at night in place of the second dose of zyrtec. This crosses the BBB and does not have the problem of becoming ineffective over time like Benadryl.

@soulfeast I am not sure if you are still on PR but would love to ask you about your experience with taking Atarax in the place of a second Zyrtec and this is something I am planning to ask my MCAS doc tomorrow. Did you continue to take one Atarax per day and if so, did you ever develop any side effects?

It is the single most effective MCAS med I have tried and it is supposed to be an "emergency med" for me but it is so effective that I would like to take one a day but am afraid of it losing it's effectiveness in emergencies if I do this. I also do not tolerate Benadryl and find Atarax to be totally different.

Would love to hear any feedback if others take Atarax for MCAS.

 

[foxy loxy]

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwi84ce9n-PJAhXC6IMKHYmsADkQFggdMAA&url=http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2998645/&usg=AFQjCNFXOD9B5pr5C3F-7TSBscqeBsg6CA&sig2=QBu5oH6OwZuZ8qAKRPSfxw

Hey you all, check out this link... I have been trying mHBOT and thought it encouraging to read this. Sounds like those with mycotoxins can really benefit from this therapy!!? I am about two months in and I must say I do have times when I just plain feel good in the head... which is unusual for me.

I have been off nasal meds for a few months now. I am going to recheck my mycotoxin levels next week. My Lyme Dr. wanted me to be off them for a few months before rechecking. Is this the way to proceed?

 

[Soundthealarm21]

@foxy loxy

It definitely helped me feel better at times. The problem is that when I did it I was still in my house with mold (obviously didn't know it at the time!). I haven't had a chance to go again as we're building a new house right now, but i'll probably go do 20 more hours after that.

 

[foxy loxy]

Soundthealarm21 thanks for that encouragement!

I am could get very excited about this therapy. My Dr. said just the little lousy home mHBOT can be just as useful as the hard hospital grade, it just takes longer. I plan on using mine for at least a year, maybe forever if it helps!! Also looks like the HBOT study on mycotoxins used mildHBOT too which I found very encouraging...

A lot of people are saying low and slow is the way to go and seeing some pretty neat results neurologically! My Dr. said he has never seen it NOT help in some way...I for one think it is worth a try! Did you try mild or hard HBOT? and were you able to keep your improvement?

 

[Soundthealarm21]

Soundthealarm21 thanks for that encouragement!

I am could get very excited about this therapy. My Dr. said just the little lousy home mHBOT can be just as useful as the hard hospital grade, it just takes longer. I plan on using mine for at least a year, maybe forever if it helps!! Also looks like the HBOT study on mycotoxins used mildHBOT too which I found very encouraging...

A lot of people are saying low and slow is the way to go and seeing some pretty neat results neurologically! My Dr. said he has never seen it NOT help in some way...I for one think it is worth a try! Did you try mild or hard HBOT? and were you able to keep your improvement?

I don't know what you mean by mild or hard. Let me know what you mean and then I can answer better!

 

[Skiii]

Any updates? Anyone have newer info from Dr. Brewer?