Omg...i Might Be On To Something

[CarlaB]

I loved to read to. I just figured children today were more into games/tv.

My kids' "screen time" is much more limited than mine!! I think they need to play more and be in front of screens less ... I'm in front of screens less when I feel good enough to do something else ...

I've also always been an avid reader. I am having trouble now though because of the Lyme brain. My attention span is too short for even a full newspaper article, much less for a book! Though I always read one chapter of a book in my sauna daily.

I would read, read, read from high school on.

Jack's teacher said he thought Jack was either adding a "0" to the real time, or recording the time and we just weren't looking at it when we signed it.

[CarlaB]

That's very interesting that Nystatin is from soil organisms. That's what Primal Defense is all about -- soil organisms. I wonder if that's why Primal Defense can cause such a reaction in some people. Maybe it's just too strong.

[diamondheart]

Oh Claire! How exciting about dairy. I don't miss dairy a whole bunch (other than milk, cheese and butter, lol), but I would LOVE some yogurt for breakfast in the morning! All the corns were a problem for me, even the syrup, but the BioSET lady thinks it's mainly a mold issue since my testing went crazy with the molds/candida.

What did you think about the fructose stuff? Didn't you say you had a problem with fructose? How did you know? I don't have a problem with fruit, as far as I know, but thought the corn syrup response was interesting.

Claire

[diamondheart]

That's very interesting that Nystatin is from soil organisms. That's what Primal Defense is all about -- soil organisms. I wonder if that's why Primal Defense can cause such a reaction in some people. Maybe it's just too strong.

Primal Defense also has questionable gluten sources, like barley grass and oat grass. I was so mad when I saw that. I used to take it, but am not now just to be on the safe side. Now I've heard there is no gluten in the vegetative parts of these plants, but how do they make sure that no seeds get in there? There's nothing on the package to say it's gluten free .

[Rachel--24]

That's very interesting that Nystatin is from soil organisms. That's what Primal Defense is all about -- soil organisms. I wonder if that's why Primal Defense can cause such a reaction in some people. Maybe it's just too strong.

I'm pretty sure the HSO's that Jordan Rubin promotes is totally different. Nystatin was discovered by two women....I think in the 50's. Its a particular bacteria strain that they isolated in the soil from someones backyard. They had been testing alot of different strains from all over the world for antifungal purposes against candida albicans and some other type of fungi. Everything that they found to be effective they then tested in animals. The stuff always turned out to be toxic to the animals...except the one strain that they found in a friends backyard. They named it "Nystatin"....after New York.

I read the story a long time ago when I first started taking Nystatin and I thought it was interesting how they discovered it.

Dang...I must be pretty "nerdily" to find stuff like this fascinating.

[Mango04]

Dang...I must be pretty "nerdily" to find stuff like this fascinating.

We are all just so nerdily interested in scientificness

(yay...my word made it into the Rachelville dictionary )

[Anonymousgurl]

OMG...yeah...my face is still not totally bloat-free. Noone can tell except me but if I put two pictures next to each other you can see the difference. My face is "bigger" now. Thats the only way I can get people to *see* it....with pictures....but I can *feel* it. When my face was really bloated it was actually painful...its not just typical bloating because I actually get tissue swelling all over my head...its from all the allergies I have.

Stupid Candida.

same here!!! hmm...you had pain in your face when it was bloated? Wow...i've only had that in my stomach. I'm sorry to hear that you had that same feeling in your face, that's torture! I hope that doesn't happen to you anymore. I think it's all of my allergies that's causing my face to bloat too...even though my diet is SO strict. It's like you said...we're allergic to EVERYTHING. THe only time I didn't have bloating in my face was when I practically stopped eating, but then I ended up at 80 something pounds and in the hospital, and we can't have that! LoL. But I also have this weird bloating usually right below my bellybutton...ugh. It's so unnatractive with the stick thin arms...

Peace....I'm feeling pretty good for someone who's allergic to *everything*.

I'm gonna start on Nystatin this weekend so I think I might go through some die-off. I hope you're feeling better??

I'm glad you're feeling good! Yea I'm going through the die-off right now too...not all that much fun...but at least you'll be able to complain to people that actually know how you feel!

Sorry you're still feeling bad. I get the eye thing...they don't really twitch so much when I'm herxing (they do at other times though), but they hurt in their sockets. I also often feel nauseated, which is why I thought I've been herxing for the last 2 days or so.

Good, now that's two people that have said that they have weird eye things going on too...im NOT going crazy, yay! LoL. Yea it actually does hurt me too...it feels kind of like...a heavy pressure?

Aww I hope you stop herxing soon then

Hi Everyone! I had to skip a few pages of everyones posts, but I think I got the gist of what's going on. Donna, Peace, and Laura, I hope you are all feeling better!

In my last episode of "The BioSET Files", Dr. F cleared me for gluten (again) and dairy (1st time). Last night's BioSET episode found that I did not clear for the gluten and I did clear for the dairy !

Thank you And congrats on the dairy. I've been cleared multiple times for dairy because my allergy keeps coming back (due to the parasites, says my BioSET lady). So the only "safe" dairy product that I seem to be able to eat is this nonfat fruit juice sweetened organic yogurt that I found at whole foods. I would look for it if you're looking for something to start off with. I've found that I can only eat it occasionally though.

I noticed someone mentioned flagyl...ugh. When I started taking it, I ended up so sick that I couldn't finish it and I had to stay in the hospital for 10 days So whoever is taking it...my heart goes out to you.

[CarlaB]

Primal Defense also has questionable gluten sources, like barley grass and oat grass. I was so mad when I saw that. I used to take it, but am not now just to be on the safe side. Now I've heard there is no gluten in the vegetative parts of these plants, but how do they make sure that no seeds get in there? There's nothing on the package to say it's gluten free .

Yes, we were talking about that .... none of us take it anymore.

[CarlaB]

I'm pretty sure the HSO's that Jordan Rubin promotes is totally different. Nystatin was discovered by two women....I think in the 50's.

Dang...I must be pretty "nerdily" to find stuff like this fascinating.

Actually, the stuff is interesting ...

What is interesting about both Nystatin and Primal Defense coming from soil is that the bacteria we need is in the dirt. It used to be that we grew vegetables in dirt that had bacteria and we ended up getting the bacteria we needed from them. Now our soils for our fields is so dead that our vegetables are "clean" of bacteria, which ends up hurting our guts. We're always so concerned about everything being totally void of bacteria (anti-bacterial everything!) that we aren't even getting the good bacteria that keeps our immune system in balance. The modern farming methods hurt us in more ways than one!!

I didn't know that Nystatin was bacteria from soil before you mentioned it. I'm sure it's different from Primal Defense, but it still struck me that they both originated from soil.

[Rachel--24]

We're always so concerned about everything being totally void of bacteria (anti-bacterial everything!) that we aren't even getting the good bacteria that keeps our immune system in balance. The modern farming methods hurt us in more ways than one!!

This is totally true Carla. I've heard it and read it many times. This is exactly why they say anti-bacterial soap is not good....we have made our environment "too" sterile. Its not good for the immune system. I've heard that not allowing the immune system to do what its designed to do....can actually harm us.

If you sterlize everything and worry about every germ you might encounter your immune system will bet "bored" and start fighting off things that it really shouldnt be fighting....things that are perfectly safe. The immune system is a defense system.....its there to protect us and if you dont allow for it to do its job....it could backfire on you.

I dont know if its true but I've heard this lots of times.....that its not good to live in too much of a sterile environment w/out allowing your immune system to be exposed to things. Exposure to normal germs keeps the immune system functioning normally. So I guess it could "malfunction" if it goes for long periods w/out having anything to do.

Have you heard this before??

[CarlaB]

What I've heard is that the bacteria in our bodies has a function. If we don't have the bacteria, then the function it's supposed to accomplish doesn't get done.

I know if we use anti-bacterial handsoap in our house, then several, but not all, of my kids will get this really bad skin on the backs of their hands. If we just use regular soap, it doesn't happen. Obviously, there is some bacteria on their hands that needs to be there. I am guessing it's some kind of fungal/yeast infection they must get with the anti-bacterial soap.

Same thing with the way produce used to be grown. There was bacteria in the soil ... but now we deplete our soil of everything and add the nutrition back into it with artificial fertilizers. Not only do the fertilizers not necessarily give all the nutrients to the plants/our food, but also the bacteria that was in the soil never makes it into our bodies.

I don't know if the immune system malfunctions when it's a sterile environment ... I just haven't read about it ... it could very well be true. I think that the bacteria in our bodies, the bacteria that should be there, is almost part of our immune system's function ... like the bacteria keeping down the candida overgrowth.

There's a new Grey's Anatomy on tonight ... it was good. I loved the bank scene ... I'll say no more! Good night all! Adam's already called once to be sure I was in bed (I'm not). I told him that I don't really see why it matters ... I've been sleeping 12-14 hours per day (or more). Something's gotta be working, right????

[Rachel--24]

I noticed someone mentioned flagyl...ugh. When I started taking it, I ended up so sick that I couldn't finish it and I had to stay in the hospital for 10 days So whoever is taking it...my heart goes out to you.

I dont think anyone is on flagyl right now....but I think a few of us have had the unlucky experience of being on that HEINOUS drug. Flagyl sucks!!

On my 3rd or 4th day of Flagyl I woke up and the room was spinning, I was really nauseus, I could barely walk and I was really dizzy. I couldnt make it to work. I dont know if it was a herx or the drug itself....or if I got glutened at a baby shower the day before.

I was hungry at the baby shower so I ate some fruit that was cut on the same cutting board as bread and with the same knife. There was crumbs around but I dont know if that chance of cc could have caused the reaction or not.

I was on flagyl for 2 weeks and I was pretty depressed the whole time....I had loose stools and basically felt like a zombie. The doctors had me on tons of probiotics so I dont know exactly what made me feel so bad.....but man was I glad when it was over.

I know alot of people arent able to complete their round of flagyl but I didnt want to give up...I finished the bottle and I hope I never have to take it again.

Peace.....what were you on the flagyl for?? I bet you had a really bad herx....flagyl is sometimes used to kill Lyme. 10 days in the hospital....wow....you've been through alot.

I havent had to be hospitilized throughout this whole thing.

When I was really bad my mom was begging them to put me in the hospital cuz I was losing alot of weight and I couldnt keep food down. I was weak and could barely hold my head up. The doctors wouldnt put me in the hospital because they said I was fine....since I could still drink water.

I think they just never took me serious and thought it was all psychological.

[Rachel--24]

I don't know if the immune system malfunctions when it's a sterile environment ... I just haven't read about it ... it could very well be true. I think that the bacteria in our bodies, the bacteria that should be there, is almost part of our immune system's function ... like the bacteria keeping down the candida overgrowth.

Ok....so you know I had to look this up ...there is no stopping the the nerdiness in me.

Yeah....they say we need to be exposed to bacteria and germs to keep the immune system healthy....especially kids.

Living in a sterile household environment can hinder a child's ability to naturally fight infections. Many studies have pointed to the fact that growing up in a sterile environment may contribute to the development of allergies and asthma.

Dr. Stuart Levy, a microbiologist of the Alliance for Prudent Use of Antibiotics (APUA) noted during the International Conference on Emerging Infectious Diseases that a baby must be exposed to germs during its first year in order to develop the antibodies necessary to fight infection later in life. "Dousing everything we touch with antibacterial soaps can upset the natural balance of microorganisms in and around us, leaving behind only 'superbugs'," he said. "Antibacterial soaps and lotions should be reserved for sick patients, not the healthy household", he said.

Dr. Mercola noted in his newsletter that a vast majority of the bacteria and viruses that kids are exposed to are completely non-pathogenic anyway, and may be quite beneficial. Those few organisms that do cause illness may provide benefits by allowing the immune system to develop properly.

"It is dangerous for anyone, especially children, to live in a sterile environment," he said. "There is a natural and beneficial symbiotic relationship that exists between humans and microorganisms and it seems clear that we need exposure to bacteria for a healthy immune system, as natural bacteria and viruses act as natural vaccines. Healthy immune systems should not be assaulted with unnatural vaccines" or unnecessary antibiotics. "If we stay away from these, we can build the appropriate antibody and immune response systems and prevent many diseases (not just asthma) as we grow into adulthood and beyond", said Dr. Mercola.

A recent survey of 295 national brand liquid soaps and 733 bar soaps for that 75% of liquid soaps and nearly 30% of bar soaps contain antibacterial compounds like triclosan. It is even more difficult to find liquid soaps for children that do not contain antibacterial agents.

Dr. Mercola recommends that "if your kids simply MUST have a soap with their favorite television character on the dispenser, then simply use the dispenser and fill it with a mild natural soap."

So yeah....they're messing with everything and I think its also messing with our immune systems. All of our food is pretty much "dead" by the time we eat it. We need bacteria and "live" enzymes and all that stuff to keep ourselves healthy. Sheeesh...the more I learn the more disgusted I get. How messed up is the world gonna be for future generations??

I think life seemed way more simple befoe I got sick. I truelly understand the meaning of the phrase "Ignorance is bliss".

[Rachel--24]

Yea it actually does hurt me too...it feels kind of like...a heavy pressure?

I had this too. My eye symptoms were the worst symptoms I've had to deal with this whole 4 years. My eyes hurt really bad during the first year....intense pressure and unbelievable pain. I cant even describe it but I hope I never experience anything like it ever again. I had to wear a bandana over my eyes too...because I got extremely sensitive to light. It was very painful.

[Rachel--24]

(yay...my word made it into the Rachelville dictionary )

Yup...and I'm sure it will be used often here....it goes so well with "scientificness".

[Rachel--24]

Dr. F also told me to be careful with corn. He said it's AC/DC with people who don't tolerate gluten. I kept asking him what that meant, but we got distracted by the whole corn syrup thing. Anyways, I think I'll stay away from processed corn for now, and maybe just see how I do with fresh corn. I really don't miss corn products anyways.

Claire...good luck with the dairy!!

Dont know what he meant by AC/DC but I just read that since alot of people with gluten intolerance also have candida issues the situation can get worse after going gluten-free and introducing so much corn into your diet. Mainly because corn is the most moldy grain of all and full of fungi and mycotoxins....not good for a person with yeast overgrowth.

It could seem like you're intolerant to corn when its really an issue of molds and yeast. About the corn syrup...its really bad for people with dysbiosis or any other gut problems. Its also one of the worst things to eat if you have candida. Corn syrup is really unhealthy....especially high fructose corn syrup.

[Rachel--24]

Until the next episode of the BioSET Files..

I loved that!

I had an appt. tonight. It was a good session...we did the thyroid panel. I had BioSET lady #3 (Debbie)....whom I've only seen once before. Shes good...she spends alot of time and has a good amount of knowledge. I felt like the appt. went well.

I'll post about it tomorrow cuz I'm pretty tired right now.

Andrea...I'll be around tomorrow cuz my movie plans got cancelled due to work stuff (not safeway).

My friend wants me to come back from Manteca early on Sunday since we cant go tomorrow. I'll have to try to work something out. I'll have to go home maybe tomorrow. This messes up my plans for starting the Nystatin....but I gotta have "somewhat" of a life too.

[diamondheart]

How do you do that multiple quote thing from multiple people. Is it time consuming to do?

I took Flagyl many many times when I lived in West Africa for 2 years in the Peace Corps. The only negative side effect I remember was this metalic taste in my mouth. I had amoeba parasites every other month. Finally, at the end of my 2 years, I thought I had amoebas again, and I just went to a Senegalese pharmacy and bought Flagyl. Turns out I had Hepatitis A instead . That was many years ago, more than I care to admit! Ok, I'm not that old. It was 17 years ago. Even though it was a life changing experience, it definitely was hard on my body. I'm glad I did it when I was young! I wonder if my intestinal woes started there ?

For as many parasites and infectious diseases that were there, I actually ate really well. I used to get bored of eating because I was eating for 10 billion !

Claire

[rinne]

Hello everyone, nice to see new people finding Rachelville, I feel like I have been lost in the hinterlands. I'm watching the movie channel and sleeping lots, less pain and generally a feeling that I am getting better though emotionally I feel very flat.

I watched "An Inconvenient Truth" recently, has anyone seen it? I highly recommend it.

Carla, sounds like you are sleeping a lot too, yes? Have you started taking the artemisinin? Spelling?

[Fiddle-Faddle]

Yeah....they say we need to be exposed to bacteria and germs to keep the immune system healthy....especially kids.

Oh, wow, my kids are going to be SO healthy! We have the 10-second rule at our house (if it falls on the floor, you have 10 seconds to pick it up and eat it), which just horrifies my mother!

[Rachel--24]

Oh, wow, my kids are going to be SO healthy! We have the 10-second rule at our house (if it falls on the floor, you have 10 seconds to pick it up and eat it), which just horrifies my mother!

ROFL....

Alison....I can picture your mother's face as she watches in horror....I bet she looks something like this

"God made dirt....dirt dont hurt"

[LL04]

Rachel, thanks for the links to those articles. I've read so many articles over the past 2 years that I didn't think that I was going to find anything new to help me out. I posted some of your post from the other day regarding C.Albicans on another thread. I noticed that you were there the same time as me...probably to mediate

I'm sorry about that but I have such a hard time not saying anything when it comes to people who post on here who are so obviously getting terrible info but are not able to recognize it. I get so angry because I know how many doctors and specialists I've seen over the years and how absolutely clueless some of them have been, and it just irks me that these people continue to treat patients In that particular case, a nutritionist was giving medical advice....to me that's just nuts to even think that the poster doesn't find that weird, strange or out of the ordinary It's the same with those posters who say "Oh, I went to Subway yesterday and I got glutened! Now I'm so sick!"....WELL NO KIDDING!! What did you think was going to happen if you went to a restaurant whose specialty was making SANDWICHES??? I can hardly tolerate it.

That's actually why I stopped coming to this website, I just got fed up with reading posts like that and I felt like I couldn't connect, like no one shared the same problem as I was having. I was soooo ULTRA careful, never ate out...well you know, just the whole nine yards "religiously" gluten-free and still I was so sick. I couldn't relate to what anyone was saying on this board. I just wish I had noticed your post that started this thread. The only reason I came back to this site was because after having yet another hospital stay and my kids missing Christmas because of me, I was at the end of my rope...I was going to post something in this forum as a last ditch attempt to get help from someone who might be going through the same thing I was. That's when I saw your post with the 'I might be on to something' heading. As soon as I clicked on it, I knew I'd found what I was looking for.

So, I promise, I won't go into the other threads and bully anyone anymore. I just have to let it go. I have enough of my own problems, I have to realize that I can't be worried about everyone else's all the time too. I also have to realize that some people are just not as serious about their health and celiac disease as others are and having a Big Mac every once in awhile is perfectly acceptable to them just as having a bunch of sugary candy everyday is completely acceptable to some diabetics.

I have to realize to that I'm a dumbass too, asking you guys questions like 'what should I be giving my kids to drink that's healthy". What kind of dumbass question was that??? Okay, so we aren't all full of scientificness like some of you are here in this thread and I have so much more to learn myself. No more poster beating

[LL04]

Okay so now I have a few more questions...

Question 1: Have any of you heard of this mangosteen juice which I cannot name here for some reason and what do you make of it? Snake oil yes or no?

Question 2: I had to take my oldest daughter to see the dr. today and he said that he was going through some of his journals looking for some possible answers for me and he came across something called Whipple (sp.?) Disease. I haven't looked it up yet myself but he thought it may be a possibility as well. Have any of you heard of it?

Question 3: My dr. told me that he got my package on Lyme Disease and was well aware that it is not very accurately diagnosed because of the poor lab testing methods. He thought that it was something that we should consider. He said that the treatment of both Lyme and Whipple Disease were both similar in that an antibiotic would have to be prescribed to try and kill the bacteria. He said it would most likely be tetracycline (to add to the candida issue-after he said that I realized in horror that I was on tetracycline for years for bad teenage acne!!!UUUGGGHHH I had totally forgotten about that). So some of you Lyme experts...what's your opinion on tetracycline to treat it? I read that Lyme encompasses a few different bacteria so will Tetracycline work on every one of them?

Question 4: Carla, I don't want to pry but how much did the IgeniX blood panel cost? The doctor said that our medical would not pay to have my blood sent to them because of the cost involved and the mentality that the current testing available to Canadians is good enough so I may just have to buy one myself if he really thinks it could be the problem. I would want to know for sure if that is definitely what is wrong.

Thanks for helping this dumbass out

[LL04]

Okay, so I found a link for Whipple's Disease and personally, I don't think it's me but in case anyone else is curious...

Open Original Shared Link

[NoGluGirl]

Why do you think this was? Because of gluten in the Flagyl or because of candida?

Dear CarlaB,

I called the manufacturer before even taking the Flagyl. It is gluten free. So the candida is the more likely suspect. I cannot say I am totally discounting the possibility of Lyme disease after I saw something on t.v. tonight. The extreme fatigue and feeling strange all over is problematic.

Sincerely,

NoGluGirl