I've come up with a biofilm protocol...what do you think?

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JeniB
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Re: I've come up with a biofilm protocol...what do you think?

Postby JeniB » Wed Feb 01, 2012 4:21 pm

wow, sorry to hear that. I haven't seen this yet in my son either. Wonder if since we're treating yeast for our boys so heavily that this has kept yeast from getting bad, killing bacteria always makes yeast flare up for us. do you think it could be yeast for you? were you treating for yeast along with it? All of our OCD is gone for now. But I don't see any more gains as of yet. Kind of at a halt on that too. With doing the B6 protocol and a sinus infection he had, OCD had come back pretty bad for us.This seems to have gotten rid of it for now. But we have been treating yeast pretty heavy too as always.

You know, something stood out to me about the tongue comment (pink) and white. My son, like JL's has always had a reddish tongue. Never white since biomed began. We've been treating yeast for years and he has it pretty bad. I know things cure from the inside out, do you think the yeast became more internal with killing off bacteria so your tongue is more pink? Maybe white is a better indication of it coming out? I remember reading that sometimes when it surfaces on the outer, that the inner is fighting it better. I, myself, have a coated tounge. I don't have autism either, and my daughters tongues are a bit coated too. they're nt. my son really never has that I can remember, except as a baby. This is when he wasn't autistic acting. Makes me wonder if his insides still can't fight it well and "push it out", like you and yours can? makes me wonder now.

thanks for letting us all know how it was working for you. Sorry it went so bad for you though, yikes!
Jen
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AnxiousDad
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Re: I've come up with a biofilm protocol...what do you think?

Postby AnxiousDad » Wed Feb 01, 2012 4:45 pm

amanda NC wrote:At any rate, after that week I got a terrible infection, which then led into a horrible back ache, and achy muscles like I had the flu, and then a terrible headache, and now am left with a HORRIBLE acid stomach that I suspect might be bacteria. Bad enough to keep me awake at night; I'm back on Prevacid for the first time in years.

I was on lactoferrin/Xylitol protocol as well for a week and I had the exact same symptoms as you including kidney infection causing back pain, horrible stomach acid and burning in the stomach.
My kid is still doing it but i cant tell whether he is suffering like me.

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Wed Feb 01, 2012 9:22 pm

sorry amanda. Yes, we have been using GSE and Caprylic acid MOST days( forgot yesterday) after doing hte lactoferrin stuff.

Allie is really really sick. Sinus stuff.......and horrible horrible acetone diarrhea. Our metabolic testing came back and it was NORMAL. EVERYTHING. Oxalates, ketones, aminos, carnitines....EVERYTHING. So confused. The Genetics nurse said to call GI clinic. Sigh.
We are going there on Friday....and hope she poops acetone again. :)

School said it smelled "metallic and like nail polish remover". They sent her home today bc she pooped 4 times in an hour!!!!

Does that sound like oxalate dump? I have been trying to hit up yeast and bacteria hard with this. Every few hours it's probios, or GSE, or Lactoferrin...etc.

She has been better cognitively though. No regression. So yeasty behaviors. No OCD.

I hope things are dying off in her... Liver function was normal, renal was normal.

I'll try the lactoferrin as well, and see what comes of it for me. I don't think Allie has a klebsiella overgrowth or any bacterial overgrowth because her OAT was normal, and it would have been a tad abnormal if she had an overgrowth( according to the metabolics nurse).

I took her off milk today because of her sinuses....so no lactoferrin/xylitol until tomorrow...

amanda NC
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Re: I've come up with a biofilm protocol...what do you think?

Postby amanda NC » Wed Feb 01, 2012 10:00 pm

AnxiousDad wrote:
amanda NC wrote:At any rate, after that week I got a terrible infection, which then led into a horrible back ache, and achy muscles like I had the flu, and then a terrible headache, and now am left with a HORRIBLE acid stomach that I suspect might be bacteria. Bad enough to keep me awake at night; I'm back on Prevacid for the first time in years.

I was on lactoferrin/Xylitol protocol as well for a week and I had the exact same symptoms as you including kidney infection causing back pain, horrible stomach acid and burning in the stomach.
My kid is still doing it but i cant tell whether he is suffering like me.


Hmmmm...wondering then if it could be die-off. You know, I guess in reality that die-off and infection would look pretty much the same. I read that you'd gotten sick--what have you done since then? Have you stopped the protocol? Do you feel better than you did?

I was pretty sure it was die--off until JeniB mentioned klebsiella in a note to me and I began researching it. SO many things happened at the same time that I feel it might have been die-off, but worried it wasn't.

Mimi, thank you for mentioning those other possibilities. Maybe I could do them for awhile and come back to this and try again?

Jennylynne, that is so strange! Really, normal tests? I feel i have read about that specific smell. I'll have to look and see if I can find it. Neat that she seems to feel good, though. I don't think that sounds like oxalates. I feel that it sounds more like bacteria die-off, maybe? Really bad ecology in there to have that smell....
Amanda, mom of 3

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Thu Feb 02, 2012 3:11 am

OMG Die off is HORRIBLE.

I like beer, chocolate, carbs, and sugar. I never drink sugar, but I love dark chocolate. I can tell when I have had sugar because I get shakey, naseauted, and icky feeling. Also, my stomach hurts after a while and I lose my appetite.

I took a huge amt of GSE, caprylic acid, and probiotics for a few days...........and I thought I had the FLU. It was horrible. So die off.....is bad.

Klebsiella manifests in bladder infections a lot. Makes sense that doing a biofilm if you have it might cause kidney/bladder symptoms.

Amanda- Look up alberta's posts. She says Acetone smell is OXALATE dumping. Metabolics told me it is ketones...but her ketones were normal on Thursday and she had acetone stool earlier that week. Then she got it RIGHT AFTER chelation ended....hmmmm. Could it be ammonia from bacteria?????

I was kind of upset her tests were normal.......because I really wanted something that was lab tested treatable...not doing what I am doing....yaknow.
Her Carnitine transport is normal........Carnitine level is normal but smack dab center...so she said to keep giving L Carnitine just in case it was low before..same with Taurine. No other aminos even needed. I wonder what our GPL Oat will say. Gotta wait 3 weeks.

It HAS to be some kind of die off.......because I am seeing GOOD things since I started the Lactoferrin and benfotiamine. Can't stop either yet.....
she is starting to try to combine words. I was trying " More" "sticker" ( she loves stickers)...she was saying like " moh........kikah"

I am still going to see if the GI can do some tests for bacterial overgrowth and help us determine what to do. Might as well. COnventional medicine is
100% covered for us for 3 more years.....so we want to have every test in the world done on her so that we know we covered every thing later on. Then we can do it on our own once we rule everything out. She had Cab Malabsorption in Sept........and I want to see that gone... I'll see what the GI has to say.

JeniB
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Re: I've come up with a biofilm protocol...what do you think?

Postby JeniB » Thu Feb 02, 2012 7:03 am

I also wonder if it's a yeast overgrowth when killing off bacteria? are you guys using yeast meds when doing this too? My son is on so much of it and we did see some yeast try to come up with it too. I'm thinking of stopping the xylitol and keeping in the lactoferrin and the other stuff I'm doing. Something that seems to be helping my son is the Zinc-carnosine supplement and DGL (licorice). I wonder why we all don't focus on rebuilding the intestinal layer too. There's a local lady here that does a "leaky gut cure" ebook. And it actually has some good info in it about mostly using a GAPS type of diet but the supplements she recommends also repair the lining of the gut. here's a couple she recommends...

http://www.vitalnutrients.net/Order/Product.aspx?ID=57
http://www.vitalnutrients.net/Order/Product.aspx?ID=56

When I give my son DGL, he does better. if he's foggy he comes out of it. It promotes intestinal mucous. Also, what about NAG? it is shellfish based but I think it helps repair the tight junctions of the gut. We also need to look into healthy cholesterol as well. My husband went on a low carb diet and bam...inherited terrible gut issues. It turns out that good cholesterol lines the intestes and keeps it from leaking. It is the waxy substance that forms on nerves as well. :shock: so getting the body to actually MAKE good cholesterol is something we all need to be looking into too. I don't think my son has the ability to repair his intestinal lining. This is why I have to keep fighting stuff. It is so darn damaged and doesn't have the nutrients to repair itself. Bone broth has proline and glutamine which also seals off leaking in the gut. Proline is used to seal the vessels too. Without good cholesterol our bodies will use minerals to seal the "holes" if you uncover that, you may have raw skin underneath the plaques in the intestines and stomach trying to "keep things in" but it's also hiding bacteria. So, temporarily you might feel better with antacids but then it creates the problem too.
Jen
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jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Thu Feb 02, 2012 7:47 pm

Jen and amanda- So our DAN called......the creatinine on her urine was the border of too low to test. IT was the same urine used for Children's.

So........the CHildren's test might have been too diluted to test for what we are looking for....minor issues of ketones, oxalates,and stuff like deficiencies.
It would have still detected Major acidosis like in Gene Mutations. So while she has no inborn errors.........I think the test was useless.

We have to test again for our GPL OAT...and start from scratch. She is sick.......so we have to wait until next week to collect because I want to see if her levels are still high when she is not sick. Then compare to see if her bacterial and fungal markers are high.

still No yeasty stool that I can see. Her stool looks bacterial. Total Watery. maybe viral? Not yeast. No strings. It looks like it did when she got sick on Valtrex. She was on Valtrex and Ampho. Got the "flu" halfway in it........then would not eat, would not drink, and had cottage cheese like Breastfed infant type stool. That is what it is like now. With undigested vegetables. I am thinking she has either bacterial die off...or viral stool/die off from her illness( the cold is actual from school...other kids had it this week).

I tried the lactoferrin/xylitol. I'll let you guys know if I have a bad reaction too. Only once a day though. Doing Allie 2 times a day.

Gave her OLE today .....hoping it's not a bad thing. Gave it to her on Tuesday once because of the cold. Now today once. Hoping it helps and doesn't backfire. Also did 2 doses lactoferrin, and 2 doses GSE/caprylic acid.

Im trying r5p soon too as we are seeing good things lately.

GBM09
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Re: I've come up with a biofilm protocol...what do you think?

Postby GBM09 » Thu Feb 02, 2012 9:41 pm

I'm new here and to autism. Can you explain biofilm. Thanks.

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Fri Feb 03, 2012 8:09 pm

Went to the GI today. Just as I thought.

She said Allie probably doesn't have sibo. " everyone has klebsiella in their gut". She called it toddler diarrhea . Then she said Allie had fat in her last stool sample. Wikipedia says that can be caused by cystic fibrosis and sibo. Lol.

I asked her how they diagnose sibo. She said on a toddler? Just treatment with abx and see if that helps. I said what if they keep getting it... Keep doing abx forever and kill all Tge good guys? She seemed to think that wasn't a big issue. Sigh.

So after I convince her we have sibo... She is going to suggest abx or say it's not a big deal. She wants us to see a nutritionist bc Allie is not growing well. Well I'm not an astrophysicist or anything but I know it's bx she isn't absorbing nutrients... Bc of her SIBO.

At least we only paid gas.... And got to go shopping after( dh got off work)...

Stopped The xylitol bc of her diarrhea and did lactoferrin with whey protein and some OJ.

Bought keifer grains but buying goat keifer fir mean time. Bc I gave get off lactose until d
She is normal again.

Are u still doing Tge lactoferrin?

amanda NC
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Re: I've come up with a biofilm protocol...what do you think?

Postby amanda NC » Sat Feb 18, 2012 4:57 pm

Sorry I'm taking so long for the follow-up to this. I got REALLY messed up from this protocol, and stopped it, but am trying now to figure out how to start again. Because of a few things JeniB said, I think I might have gotten an out-of-control klebsiella overgrowth, or else a yeast overgrowth. My stomach was totally messed up until just this week. Guess how I fixed it? Kefir! :D Thought you'd like that, Jennylynne. I bought a brand called "Helios" at the HFS. The woman who wrote the BED (Donna Gates/Body Ecology Diet) said that's the only one commercially available that they feel has the "real" kefir bacteria in it--others are really just thin yogurt. But I am BLOWN AWAY by the kefir. I think it knocked out the bacteria that was in my stomach causing horrible acid every night, all night in about two days. What I did was drink about a cup of it right before bed, on a very empty stomach. What Donna said is that it will sit and populate in there all night, since the digestive system is pretty much shut down. My oldest DD who has not been doing well and has been struggling with acne issues and fatigue drank some just last night, and swears her skin is better already today. So I'm encouraged. Post more in a bit....
Amanda, mom of 3

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Sat Feb 18, 2012 8:48 pm

We ditched the xylitol since she's using everything spectrum enzymes which are identical to vitalzymes... Knock off? Anyways... They have serattia enzymes and xylitol so I've been just doing lactoferrin for yeast, then gse and caprylic for both.

We tried homeade keifer. Yesterday my 15 mo old spiked a 101 fever. I think the keifer screwed her up or caused die off. I was afraid of listeria but the milk would only have listeria if it had been recalled I think. She is fine now. No more keifer for them. I'll use it for me.

We are doing a round so I'm concentrating on gse and caprylic...

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Sat Feb 18, 2012 8:56 pm

I freaked out and asked a friend snd she said ong you gave them 1/4 cup homade keifer. I think it like killed everything in ydd. Strong stuff. I am taking a little daily. Gave some to odd with no change noted. She takes lactic acid live probes though( Vsl) so her body can handle keifer. It did cause constipation in her though and loose stool in me. Maybe it was Tge b vitamins causing constipation though. The only problem with Helios is I have her in jersey milk so I buy goat keifer which is good too I heard... Dunno. I add lactobacillus to it too.

JsMominVA
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Re: I've come up with a biofilm protocol...what do you think?

Postby JsMominVA » Sun Feb 19, 2012 10:47 am

Hey Amanda,

It's funny you mention the kefir because I started making SCD goat's yogurt and that really helped me. Ever since I started that I have been feeling good. Although I am in the middle of the SCD intro diet (never did it before) I am still continuing the yogurt because it's helped immensely and I stopped my probiotics. That is interesting about taking it at night. Maybe I will switch. I have been eating yogurt first thing in the morning.

Jennylynne,

What about trying goat's yogurt? It's really easy to make and you can use pasteurized goat's milk.

JsMominVA

amanda NC
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Re: I've come up with a biofilm protocol...what do you think?

Postby amanda NC » Sun Feb 19, 2012 10:51 am

Oh no!! I was taking a LOT of the kefir too--and I had a total body ache for two days. All my joints were SO stiff. I thought maybe a fever too, but I was sick enough (well, I guess just achey) that I had two days of down time. So you think that might be die-off from the kefir? What I DO know is that I had a really great day yesterday, and my stomach is FLAT. Looks really good. Hmmmm....I gave my kids like two tablespoons each last night, but it was the vanilla kind with sugar in it as they won't take the plain yet. I will work up to that. I am sorry your darling had the fever--but if it's die-off, then maybe you will see some gains too. I really want my hubby to try it, and if there's big die-off, he'll stop and refuse anymore. I can make the kids take it though!! :D

So just enzymes with the lactoferrin? I think I will try that too. I saw good things with my son, and since we stopped they're gone, I think. Hard to know what's doing what. But I want to try again. Not often I find something that has such a big impact.

ARe you doing any cultured veggies? I have one child who will take the juice. Just one out of three. But I think that the cabbage juice caused some big-time die-off in me too.

Such a big mountain to climb, and too many things to figure out.

Oh--we've been doing the benfo, and I think we have significant language gains from it. Staying the course with my son at least, even if the rest of us are struggling....

Have a great Sunday!! We're expecting snow :shock:
Amanda, mom of 3

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Sun Feb 19, 2012 6:10 pm

nah, not into making SCD yogurt. I heard it is hard when using a yogurt maker. We have high electrical bills
so I don't want to do that leave the oven on low all night. The keifer is easy to make.
We buy local goat's yogurt that is freshly made and only pasturized before making. BUT...they have been out
of it for a month or so....

We can't get any goat milk right now. The local dairy is out of stock and I don't buy anything ultra pasturized.
So it is only cow milk for us.


Amanda- My friend said Keifer is really strong, and that it probably caused die off in YDD.
It was my YDD that I gave it to. She is NT so far... I gave it to ODD too , but she didn't have
any response at all to it.
She is really really really yeasty this round. She is irritable, running around the house. Refused lunch
other than tortillas( which made me know she is really yeasty). She also had 4 BMs today and usually has
one a day. I used keifer to marinate the chicken for tonight instead of yogurt since I don't buy the store
brand yogurts for the kids anymore. i am using the Goat keifer too because it is thicker...but I threw some of the homeade
stuff in too because I think the bacteria will help denature the chicken protein( I think that is the whole
point in using yogurt to marinade...but not sure).- BTW I am making indian food...trying to get the kids to eat veggies tonight
and that is a sure fire way...

ODD is really picky about what she drinks. If I had a vitamix blender...I would juice some cabbage into her smoothies...
I am not really good at even making keifer so not about to experiment with other veggies. I hate
Kim chee BTW..and DD hates saurkraut. I love it..

No change from the Thiamine. Good things from Riboflavin...but it could be from chelation. She gained back pointing to her
hair...and GIVING HIGH FIVES. we taught that last year...and she lost the skill till a few weeks ago. Hard to know what is causing what
though.

amanda NC
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Re: I've come up with a biofilm protocol...what do you think?

Postby amanda NC » Sun Feb 19, 2012 8:45 pm

Can't wait to try the riboflavin!! Waiting to add it in until we are stabilized and I know what it's doing for sure. Living in a mess right now--big health and job issues all around, and I'm totally losing track of stuff. I'm lucky to get all the doses of stuff in each day, and often miss stuff. Yes, the yogurt is a pain! I can't wait to find grains and try my own kefir!
Amanda, mom of 3

jennylynne
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Re: I've come up with a biofilm protocol...what do you think?

Postby jennylynne » Mon Feb 20, 2012 2:26 am

Amanda- I gave Allie a mango lassie tonight ( goat keifer...probably more like yogurt..., mango, xylitol, and lactoferrin).
Wondering what that combo will do........ Doing Culturelle here in a few...and then VSL later on with her Dmsa.
The Riboflavin is doing something...very slowly. Allie said a 2 phrase combo tonight UNPROMPTED.

We did our usual sticker routine( I let her put one sticker a time on her Curious George activity book meant for like a 5+ yr old). I was prompting " do you want More stickers?". then once she said unprompted..."Moh kikah". I am only doing 36 mg right now...but wondering if she needs more...

williams_dad
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Re: I've come up with a biofilm protocol...what do you think?

Postby williams_dad » Mon Feb 20, 2012 3:04 am

GBM09 wrote:I'm new here and to autism. Can you explain biofilm. Thanks.

bacterial slime colonies

bacteria colonies make it to protect themselves
http://en.wikipedia.org/wiki/Biofilm
http://www.cs.montana.edu/ross/personal ... lms-s1.htm
http://www.entkent.com/biofilms.html

hope this helps
http://spectrumsleuth.fr.yuku.com/forums/11/General/General

JsMominVA
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Re: I've come up with a biofilm protocol...what do you think?

Postby JsMominVA » Mon Feb 20, 2012 8:30 am

I use a dehydrator to make yogurt so it isn't very difficult to make. I also use pasteurized goat's milk. The hardest part is waiting for the temperature to go down. I have heard using a yogurt maker is more difficult.

JeniB
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Re: I've come up with a biofilm protocol...what do you think?

Postby JeniB » Mon Feb 20, 2012 10:10 am

kefir is very strong and we've been using it for 2 years at least and it's been a great intervention. VERY STRONG stuff!

Increasing the doses of the B vitamins have been such a great intervention for us. Riboflavin too. I've done at least 72 mg of it a day for quite some time now. For us, I had to use benfotiamine in high doses to see anything. Not all kids need it however, mine sure did though. Arsenic really inhibits conversion of thiamine in a big way. That's why arsenic poisoning presents just the same as thiamine deficiency. it will cause detox in kids. So, it can maybe not show gains for very toxic kids. My son has chelated for 2 years now, pretty clean, so the gains have been instant for us.
Jen
(mom of 3)

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