Detection of Mycotoxins in Patients with CFS

[jason30]

I am sorry, it was not my intention to hijack this thread. I indeed responded to foxy loxy and soundthealarm21.

I honestly don't have the slightest clue as to why you'd start feeling better around a bunch of people. That's a weird one for sure.

haha it's indeed a weird one. This was the 3th time that it happened to me. Really strange! All these 3 events were new for me, with a lot of new people and with a positive vibe. Maybe because it was new for me, it probably upped my dopamine (I am low in dopamine). But that's just a guess.
I don't think it was an increase of stress levels or adrenalin boost. I get other symptoms from this, and increased stress levels never cleared my brain fog so good. I was really calm and myself. Another thing that comes up is the connectivity, that is always good for your health!
I have learned from the Buteyko method that co2 is a problem by me. But, I am going really off-topic now.
Thanks!

 

[Ifish]

@Ifish -- I'd be curious to know if he's testing for any other genetic polymorphisms besides the two?

If not, do you know why he's zeroing in on just those two?

He is just testing the two polymorphisms. I think he is more interested in these two for several reasons. One is that correction of these defects has the most effect. In other words you are doing something that is pretty far up stream, so if you can have improvement here you can cause an improvement of many other aspects of the cycle such as gaba, glutithione etc.

I think this is the most studied and has the most solid science behind it. One of the problems out there is so much of it is so highly speculative. Personally I've done highly complex testing and regimines with no benefit, so I do like a simplier approach.

I think the other reason he keeps it limited is that he is better able to study whether his patients benefit or not.

 

[Ifish]

He is just testing the two polymorphisms. I think he is more interested in these two for several reasons. One is that correction of these defects has the most effect. In other words you are doing something that is pretty far up stream, so if you can have improvement here you can cause an improvement of many other aspects of the cycle such as gaba, glutithione etc.

I think this is the most studied and has the most solid science behind it. One of the problems out there is so much of it is so highly speculative. Personally I've done highly complex testing and regimines with no benefit, so I do like a simplier approach.

I think the other reason he keeps it limited is that he is better able to study whether his patients benefit or not.

Here is something interesting. Today I was visiting my back pain management doctor. Completely out of the blue he told me he has another patient with CFIDS who was tested for MTHFR mutations and started taking methylfolate. The doctor stated that once he hit the right dose, the improvement has been "life changing".

I went down this road many years ago and I felt I had been run over by a truck. I am hoping for a much different result since I have taken bad molds out of my environment and I have been treating my sinuses for 21 months.

 

[Forebearance]

Good luck, Ifish!

I also tried the Simplified Methylation Protocol years ago. I was so sensitive to it that I could only take tiny bits of hydroxycobalamin and Folapro. It made me detox so hard that I was sleeping all the time and couldn't function well enough to take care of myself. So I eventually switched to Raw B Complex by Vitamin Code. I wonder if it has methylfolate in it.

 

[aquariusgirl]

Ifish and everyone.. I did the methylation protocol.... & it caused excitoxicity..although I was so messed up at the time..I didnt' recognize the damage I was doing & kept on way too long... Now, having added zinc & mitosyngergy's copper... which is not regular copper....I have got SOD working and can tolerate methylfolate and B12.

 

[Soundthealarm21]

When I first started with the methylfolate and B12 I couldn't handle them. It sucked taking them. I could handle a fraction of a B12 pill and within a few minutes of taking a folate pill I wouldn't be able to breathe properly and just overall felt god awful.

I stopped even bothering trying because it felt like torture. I laughed when I read that long list that freddd made about all the possible symptoms and just kinda thought "this is crazy, i'm not putting myself through this. This is literally every damn symptom under the sun!" Fast forward several months and i'm starting to feel better and I decided to try and take both the B12 and folate again. Didn't have a single issue with it and felt no difference. It was pretty interesting. Something that only 4-5 months earlier that could kick my butt and make me feel like a train wreck had no noticeable effect on me.

 

[aquariusgirl]

When I first started with the methylfolate and B12 I couldn't handle them. It sucked taking them. I could handle a fraction of a B12 pill and within a few minutes of taking a folate pill I wouldn't be able to breathe properly and just overall felt god awful.

I stopped even bothering trying because it felt like torture. I laughed when I read that long list that freddd made about all the possible symptoms and just kinda thought "this is crazy, i'm not putting myself through this. This is literally every damn symptom under the sun!" Fast forward several months and i'm starting to feel better and I decided to try and take both the B12 and folate again. Didn't have a single issue with it and felt no difference. It was pretty interesting. Something that only 4-5 months earlier that could kick my butt and make me feel like a train wreck had no noticeable effect on me.

so what changed in the interim?

 

[Soundthealarm21]

so what changed in the interim?

Got out of a mold contaminated environment and improved immediately. Made sure I ate an at least semi decent diet that had plenty of fats and omegas. Those are the main two things that did something.

It's why I continually post on this thread to everyone asking questions about doing Brewers protocol if they've tested their environment. I know first hand how absolutely nothing else will make a difference if you're still breathing in mycotoxins.

 

[Skiii]

Hi guys. Wish Phoenix would notify me of the new posts, glad I checked on a whim to read old comments!

Going on 5 weeks of feeling terrible- mainly just overwhelming fatigue. Haven't been able to refill my CSM (which helps me a lot) because of my insurance, so I finally just paid for it and I can't wait to get it. I had a minor head cold over the weekend, and I have quite effectively knocked out with fatigue for five days. Had to skip my much anticipated doctor's appt (I want to find out my current RTL mycotoxins results!)... then this afternoon I remembered comments on here about aspartame- currently chugging Coke Zero in any effort to get my life back until my CSM comes in!

 

[Skiii]

I also had a hard time with any methylation supplements...

Half dose of Folapro made me feel like I had been hit by a Mack truck for two days.
Taking tiny amounts of glutathione every other day gave me anxiety (which disappeared when I stopped it)
And my dr tried giving me a B12 shot and 2 hours later I had an anxiety attack, and quite literally felt depressed the rest of the week.

Very hesitant (scared) to try small doses... if I can push past this fatigue I *may* try tiny amounts again, if you guys give me some encouragement.

 

[Skiii]

@JCamp how are you doing?

 

[Little Bluestem]

Half dose of Folapro made me feel like I had been hit by a Mack truck for two days.

I started with a quarter dose, but you could go even lower.

 

[Christopher]

Got out of a mold contaminated environment and improved immediately. Made sure I ate an at least semi decent diet that had plenty of fats and omegas. Those are the main two things that did something.

It's why I continually post on this thread to everyone asking questions about doing Brewers protocol if they've tested their environment. I know first hand how absolutely nothing else will make a difference if you're still breathing in mycotoxins.

did you move into an apartment or buy a new house? i need to get out of my current living situation but don't want to sign a 1 year lease if it's going to be bad for me.

 

[Soundthealarm21]

did you move into an apartment or buy a new house? i need to get out of my current living situation but don't want to sign a 1 year lease if it's going to be bad for me.

Sorry it took me so long to respond.

I'm currently in a apartment. We're building a new house. We were supposed to be in it in mid February but it got destroyed in the tornado in Rowlett so we had to start over. New date is looking like July or so. Our house is being built rather mold proof and we're taking some extreme measures.

My advice to you is to test each place before you sign anything. If the landlord won't let you do that then don't live there. You can also say you're testing for possible allergens, but just don't say anything about mold.

 

[Gingergrrl]

My advice to you is to test each place before you sign anything. If the landlord won't let you do that then don't live there.

I agree and I will never live anywhere again that does not allow us to test for mold first.

 

[Skiii]

What's the name of the pharmacy everyone is getting Nystatin from now? I haven't refilled since ASL.

 

[Ifish]

What's the name of the pharmacy everyone is getting Nystatin from now? I haven't refilled since ASL.

Imprimis
http://imprimispharma.com/our-business/sinus/

 

[JCamp]

Imprimis
http://imprimispharma.com/our-business/sinus/

What happened to Albers Pharmacy? That's where Brewer had me getting my most recent nystatin prescriptions. Has it changed again?

 

[Ifish]

You can still get nystantin from Albers, but you cannot get alot of the other items such as the nebulizer, AmphoB, and Chelating Px.

 

[aquariusgirl]

I need some advice :I am a Brewer patient & have tried the protocol off & on for a while ...have not been consistent cos I can't seem to see a difference

Ok so I got on a copper supplement ...not any copper supplement but like an $80 cuprous copper supplement ...supposedly different from any other copper on the market.

I took this fir4 months & mow I seem to get these episodes where I'm getting die off in the brain ...burning headaches ...plus itching.

I think the copper is causing fungal die off ( yeah I know it's all horribly subjective) but I'm wondering my suspicions are correct if its pointless doing the IV Amphotericin B ?

I mean you need copper to keep down fungal infections correct?