Re: Motrin for Inflammation and AKG for high Ammonia

[Guest guest]

She sounds very thorough. My Lyme doc. is very thorough also,but my

child could not handle all the neat treatments she has to offer. We

do the minimum now. Tammy F.

Dear Listmates

Our visit to lyme doctor left me with more uncertainty and

questions. More recent lab work showed high ammonia so doc

ordered AKG suppositories 3caps daily. Anyone doing this?

Ok to supplement with more B6 and P5P. Right now our B6

complex taken 2x daily gives him 500mg B6 and 20mg P5P. Is

this a good enough dose or should I do 250mg B6 and 25mg

P5P then work up to 50mg P5P?

a, I forgot the dose you recommended.

Doc wanted me to lower zinc from 100mg to 80. She was ok

with biotin at 24mg.

Here's the scoop on inflammation - she is aggressively

treating with ibuprofen @ 400mg 3x daily PLUS Rx ketamine

syrup 1-2 cc 3xdaily. When I mentoned concern about yeast,

she said bacteria and parasites give yeast not motrin.

Bypasses liver too. I mentioned Enhansa as curcumin. She

had no comment. Are there natural anti-inflammatories as

strong as Motrin? P.S. Aggressive attack Friday left me

with damaged left knee. Unable to restrain son now.

Also increase CoQl0 to 200mg.

Order liposomal glutathione. I read in earlier posts that

glutathione can cause irritability.

Also switch to hydroxy B12 due to methylation problems. I

mentioned aggression after MB12 shots.

Due to aggression after LArgininei she said stop.

Not concerned about oxalate crystals as none showing in

liver. She wants son on Low Amylose Diet in addition to

LOD somewhat modified. She does not want anything

fermented and no rice.

Next visit we do cholestyramine treatment by Dr. Shumacher

- 4weeks prior to antibiotics.

Sorry for long post. Any comments please? Thank you.

Fransel

Fransel

[Guest guest]

Fransel,

The MB12 shots were a nightmare here also when I first began. Adding folic acid

or folinic did not help. Both of these folate forms on their own also caused

trouble. After reading some of the Yasko stuff I tried the 5 methyl

tetrahydrofolate form, which was well tolerated. You can actually genetically

test to see if you're missing the alle for breakdown but we've not done that. We

loaded w a few weeks w the 5 methyl and then tried MB12 shots again – well

tolerated w no problems. My daughter has been on long term anticonvulsives and

both the OAT and the AA panels show a huge need for B12 and folate.

http://einstein-syndrome.com/biochemistry_101/hole_bucket/ is a simple schematic

and there's a more complicated one we're all familiar w too.

The B combos were enough of a problem that we dc'd them for a time. Allergy

testing showed a problem w all yeast tested so we avoid anything w bitartrate

forms, which is usually how the choline comes in the multiples. The B6 as

pyridoxine HCL is very low in the combo we use. We've found a B combo which is

tolerated. This has been very brand specific for her. In addition, she takes

700mg of P5P w/o trouble. Her doc has told me that in his network another

patient takes 3000mg w/o toxicity! I was skeptical of the 700mg! We have also

upped the biotin[there's a seizure-biotin connection]. Dana's also encouraged

its use for yeast control. My daughter takes 80mg/day. If she goes much lower

the neuro irritability reappears. I use the pain scale[1-10] to gage neuro

irritability. Anything above 3-4, I look for what has happened. When I see nasty

verbal/physical aggression, loud voice, very restless, inconsolable etc I rate

it 8-9 and look for what has occurred different in the past 24hrs. For her, it's

usually a food that she sneaks, supplement, or heavy perfumed environment.

Despite what so many say about fermented foods, kefir, yogurt, our experience

has been overwhelmingly negative unless we make our own w no strep in culture

and no dairy. Even water grown kefir put her behavior at 6-7.

We use 100mg zinc w no problem as tested via RBC. For awhile her copper was very

elevated w nasty ratios. We used lots of moly and zinc to get this more

proportional. Now we actually supp copper 1x/week.

Are you supplementing carnitine/acetyl-carnitine? Ever tried the `mito

cocktail'? What about Lysine?-bad reaction to arginine might suggest viral

problems. We do lots of lysine and I got a bit uneasy about `does she need some

arginine?' so I tried some awhile back. The nasty aggressive behavior appeared

so I won't do that again!

Ammonia here is apparent with episodes of hyperventilation. I use Yucca,

another Yasko suggestion, sprinkled on or mixed w protein foods. It's very easy

to do and helps lots. I've not seen a negative from the Yucca.

We use Motrin – undyed OTC liquid 1x/day. Not sure I see much but it makes me

feel better about doing something anti inflammatory. In the past when my

daughter seemed `sick', I had a CRP drawn through Direct Labs. It is a marker of

general inflammation. On three different occasions it was very elevated [20, 32,

25 when < 2 is nl]. I know she is dealing w a ton of inflammation. We have used

Enhansa for about 6mos and will probably quit as ins does not cover anymore and

we can do a lot of other things w that $/mo.

Ketamine was the darling of the operating room in the 70s. It was used

extensively in my workplace for people needing frequent, repeat surgeries i.e.

burn/trauma patients. It fell out of use; reports of lingering psychosis after

use. I'm not sure I would ever use it on a family member!!

It definitely becomes problematic when our children our beyond our strength to

keep them/us safe. Please know, you are not alone,

>

> Dear Listmates

>

> Our visit to lyme doctor left me with more uncertainty and questions. More

recent lab work showed high ammonia so doc ordered AKG suppositories 3caps

daily. Anyone doing this?

>

> Ok to supplement with more B6 and P5P. Right now our B6 complex taken 2x daily

gives him 500mg B6 and 20mg P5P. Is this a good enough dose or should I do 250mg

B6 and 25mg P5P then work up to 50mg P5P?

> a, I forgot the dose you recommended.

>

> Doc wanted me to lower zinc from 100mg to 80. She was ok with biotin at 24mg.

>

> Here's the scoop on inflammation - she is aggressively treating with ibuprofen

@ 400mg 3x daily PLUS Rx ketamine syrup 1-2 cc 3xdaily. When I mentoned concern

about yeast, she said bacteria and parasites give yeast not motrin. Bypasses

liver too. I mentioned Enhansa as curcumin. She had no comment. Are there

natural anti-inflammatories as strong as Motrin? P.S. Aggressive attack Friday

left me with damaged left knee. Unable to restrain son now.

>

> Also increase CoQl0 to 200mg.

> Order liposomal glutathione. I read in earlier posts that glutathione can

cause irritability.

>

> Also switch to hydroxy B12 due to methylation problems. I mentioned aggression

after MB12 shots.

>

> Due to aggression after LArgininei she said stop.

>

> Not concerned about oxalate crystals as none showing in liver. She wants son

on Low Amylose Diet in addition to LOD somewhat modified. She does not want

anything fermented and no rice.

>

> Next visit we do cholestyramine treatment by Dr. Shumacher - 4weeks prior to

antibiotics.

>

> Sorry for long post. Any comments please? Thank you. Fransel

> Fransel

>

[Guest guest]

I am concerned that being in-patient, the doctors will have difficulty agreeing

on treatments. It's one thing to give vitamins at home, but with many

mainstream doctors feeling vitamins are not needed, it might be difficult to do

anything other than psych meds in an in-patient setting. I think you should do

genetic testing to rule out PKU and related conditions. This, at least,

mainstream is willing to do if you press it. In-patient doctors might not give

any supplements unless a blood test shows they are needed.

Love and prayers,

Heidi N

>

> Dear Listmates

>

> Our visit to lyme doctor left me with more uncertainty and questions. More

recent lab work showed high ammonia so doc ordered AKG suppositories 3caps

daily. Anyone doing this?

>

> Ok to supplement with more B6 and P5P. Right now our B6 complex taken 2x daily

gives him 500mg B6 and 20mg P5P. Is this a good enough dose or should I do 250mg

B6 and 25mg P5P then work up to 50mg P5P?

> a, I forgot the dose you recommended.

>

> Doc wanted me to lower zinc from 100mg to 80. She was ok with biotin at 24mg.

>

> Here's the scoop on inflammation - she is aggressively treating with ibuprofen

@ 400mg 3x daily PLUS Rx ketamine syrup 1-2 cc 3xdaily. When I mentoned concern

about yeast, she said bacteria and parasites give yeast not motrin. Bypasses

liver too. I mentioned Enhansa as curcumin. She had no comment. Are there

natural anti-inflammatories as strong as Motrin? P.S. Aggressive attack Friday

left me with damaged left knee. Unable to restrain son now.

>

> Also increase CoQl0 to 200mg.

> Order liposomal glutathione. I read in earlier posts that glutathione can

cause irritability.

>

> Also switch to hydroxy B12 due to methylation problems. I mentioned aggression

after MB12 shots.

>

> Due to aggression after LArgininei she said stop.

>

> Not concerned about oxalate crystals as none showing in liver. She wants son

on Low Amylose Diet in addition to LOD somewhat modified. She does not want

anything fermented and no rice.

>

> Next visit we do cholestyramine treatment by Dr. Shumacher - 4weeks prior to

antibiotics.

>

> Sorry for long post. Any comments please? Thank you. Fransel

> Fransel

>

[Guest guest]

Fransel, I have been reading your posts and my heart breaks for you, I am in the

same situation you are but my son is only 11 and reading your posts scares the

daylights out of me. My son has suffered severe stress response rages for for

almost 7 years, started after two weeks on sporonox. Each time his rages get

worse i check stool tests and a strain of clostridium shows up (not C. diff, a

diff strain), we cant seem to get rid of it and the treatments for it make his

rages worse, unbearable. I have recently been doing goldenseal as sac boulardi

and culturelle make the rages unbearable but the goldenseal brought the severity

down like 80%. Have you looked into clostridium?

warmly

deborah

>

> She sounds very thorough. My Lyme doc. is very thorough also,but my

> child could not handle all the neat treatments she has to offer. We do

> the minimum now. Tammy F.

> >

> > Dear Listmates

> >

> > Our visit to lyme doctor left me with more uncertainty and questions.

> > More recent lab work showed high ammonia so doc ordered AKG

> > suppositories 3caps daily. Anyone doing this?

> >

> > Ok to supplement with more B6 and P5P. Right now our B6 complex taken

> > 2x daily gives him 500mg B6 and 20mg P5P. Is this a good enough dose

> > or should I do 250mg B6 and 25mg P5P then work up to 50mg P5P?

> > a, I forgot the dose you recommended.

> >

> > Doc wanted me to lower zinc from 100mg to 80. She was ok with biotin

> > at 24mg.

> >

> > Here's the scoop on inflammation - she is aggressively treating with

> > ibuprofen @ 400mg 3x daily PLUS Rx ketamine syrup 1-2 cc 3xdaily. When

> > I mentoned concern about yeast, she said bacteria and parasites give

> > yeast not motrin. Bypasses liver too. I mentioned Enhansa as curcumin.

> > She had no comment. Are there natural anti-inflammatories as strong as

> > Motrin? P.S. Aggressive attack Friday left me with damaged left knee.

> > Unable to restrain son now.

> >

> > Also increase CoQl0 to 200mg.

> > Order liposomal glutathione. I read in earlier posts that glutathione

> > can cause irritability.

> >

> > Also switch to hydroxy B12 due to methylation problems. I mentioned

> > aggression after MB12 shots.

> >

> > Due to aggression after LArgininei she said stop.

> >

> > Not concerned about oxalate crystals as none showing in liver. She

> > wants son on Low Amylose Diet in addition to LOD somewhat modified.

> > She does not want anything fermented and no rice.

> >

> > Next visit we do cholestyramine treatment by Dr. Shumacher - 4weeks

> > prior to antibiotics.

> >

> > Sorry for long post. Any comments please? Thank you. Fransel

> > Fransel

> >

> >

>

[Guest guest]

Fransel and Deborah,My sons seems so much like your kids.I

appreciate everything you post I am going out to buy the goldenseal

right now Deborah. My son has untreated closridia. He has had it

since two trs. old and docs only prescribe acidopholisis.My son goes

crazy on them just like your child Deborah. Thank You so much for

all your help,Tammy F.

Fransel, I have been reading your posts and my heart

breaks for you, I am in the same situation you are but my

son is only 11 and reading your posts scares the daylights

out of me. My son has suffered severe stress response

rages for for almost 7 years, started after two weeks on

sporonox. Each time his rages get worse i check stool

tests and a strain of clostridium shows up (not C. diff, a

diff strain), we cant seem to get rid of it and the

treatments for it make his rages worse, unbearable. I have

recently been doing goldenseal as sac boulardi and

culturelle make the rages unbearable but the goldenseal

brought the severity down like 80%. Have you looked into

clostridium?

warmly

deborah

>

> She sounds very thorough. My Lyme doc. is very

thorough also,but my

> child could not handle all the neat treatments she

has to offer. We do

> the minimum now. Tammy F.

> >

> > Dear Listmates

> >

> > Our visit to lyme doctor left me with more

uncertainty and questions.

> > More recent lab work showed high ammonia so doc

ordered AKG

> > suppositories 3caps daily. Anyone doing this?

> >

> > Ok to supplement with more B6 and P5P. Right now

our B6 complex taken

> > 2x daily gives him 500mg B6 and 20mg P5P. Is

this a good enough dose

> > or should I do 250mg B6 and 25mg P5P then work

up to 50mg P5P?

> > a, I forgot the dose you recommended.

> >

> > Doc wanted me to lower zinc from 100mg to 80.

She was ok with biotin

> > at 24mg.

> >

> > Here's the scoop on inflammation - she is

aggressively treating with

> > ibuprofen @ 400mg 3x daily PLUS Rx ketamine

syrup 1-2 cc 3xdaily. When

> > I mentoned concern about yeast, she said

bacteria and parasites give

> > yeast not motrin. Bypasses liver too. I

mentioned Enhansa as curcumin.

> > She had no comment. Are there natural

anti-inflammatories as strong as

> > Motrin? P.S. Aggressive attack Friday left me

with damaged left knee.

> > Unable to restrain son now.

> >

> > Also increase CoQl0 to 200mg.

> > Order liposomal glutathione. I read in earlier

posts that glutathione

> > can cause irritability.

> >

> > Also switch to hydroxy B12 due to methylation

problems. I mentioned

> > aggression after MB12 shots.

> >

> > Due to aggression after LArgininei she said

stop.

> >

> > Not concerned about oxalate crystals as none

showing in liver. She

> > wants son on Low Amylose Diet in addition to LOD

somewhat modified.

> > She does not want anything fermented and no

rice.

> >

> > Next visit we do cholestyramine treatment by Dr.

Shumacher - 4weeks

> > prior to antibiotics.

> >

> > Sorry for long post. Any comments please? Thank

you. Fransel

> > Fransel

> >

> >

>

[Guest guest]

watch how you use goldenseal.....it's has been one of my all time favorites (and holy cow the mercury that came out)....but it can be very irritating to the GI tract and is to be used 2 weeks on and 2 weeks off.

It's a great antiseptic when used right.

lisa

[Guest guest]

,

Did you use the goldenseal specifically for mercury? Or was that a " side

effect " of killing someething?

Thanks,

Bethany

>

> watch how you use goldenseal.....it's has been one of my all time favorites

(and holy cow the mercury that came out)....but it can be very irritating to the

GI tract and is to be used 2 weeks on and 2 weeks off.

>

>

> It's a great antiseptic when used right.

>

>

> lisa

>

[Guest guest]

Hi lisa, wow I didnt know it chelates mercury?

yeah I was reading that you should only do it 7 days a month, but my naturpath

said it was ok to continuously do it for like 6 weeks... so not sure what to do.

It decreased my sons stress rages (I think due to chclostridium) by like 80%,

but then I missed a day and it didnt seem to help after that, any thoughts why?

thanks

deborah

>

> watch how you use goldenseal.....it's has been one of my all time favorites

(and holy cow the mercury that came out)....but it can be very irritating to the

GI tract and is to be used 2 weeks on and 2 weeks off.

>

>

> It's a great antiseptic when used right.

>

>

> lisa

>