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Hello all, been in hospital with , home for the night, just cleared 200 odd emails, really tired, but have to throw a few questions out tonight, will try and check any replies from the hospital tomorrow.

The dreaded chicken pox started Friday, despite a dose in May, apparently mild enough back then to give no immunity, even though the seizures were dreadful that came with the few spots he did have. This dose is extremely severe, he even has them between his teeth. I thought the control we'd had from the diet might help him through, was I wrong.

He is struggling to maintain ketosis, but so far we have managed to avoid a g-tube. Even when is ketones are okay, the seizures are relentless, continual status, mouth and extremity twitching, with violent myoclonics periodically thrown in. I have been frantically reading recent messages, picked out a few things that may be relevant, as I am growing increasingly worried that diet wise things are not the same as they were at home. I realise he is bound to have lower ketones etc, but the state he is in is worsening, when we would normally have expected an improvement by now. Here come the questions,

1 ; IV SALINE, he had a continual flow of 40 mls per hour overnight last night, as he is not wanting to drink much , personally I don't think he was showing any signs of dehydration, but went with the flow on that one. Drew the line at adding dextrose, even though the Dr said one fifth was okay diet wise. I see a recent post mentions the saline should be half strength only, the hospital was not aware of this, neither was I, is this important.

Obviously it is not normal to consume regular amounts of fluid overnight, could this be throwing anything out, bearing in mind that the majority of calories is by way of fluid eggnog.

N.B, having trouble with my keyboard, can't use the shift key every time, so no question marks etc, 'scuse the puctuation' therefore.

2 ; ANTIBIOTICS, 's tissue around his eyes has swelled, as did his lips, I suspected an allergic reaction, but Drs think it is cellulitis, staph infection secondary to the chicken pox. They put him on 'keflex', other name 'cefalexin', does anyone know of this one, or any reason not to use it.

N.B, I kicked a monitor in his hospital room on Tues, tiny puncture wound on the top of my foot, couldn't walk an hour later, I too apparently have cellulitis, and am supposed to be on bed rest to stop it spreading, YEAH RIGHT. Mine is improving however, on penicillin that seems to be working.

3 ; EGGNOG, he has been having this to get him through calorie wise, hospital is following Freeman's mix of cream and egg only, he therefore has had no oil for three days. My gut says this is not good, even though he is having his usual ratio of fat etc. Any tips appreciated.

4 ; CALORIES, has been completely immobile since Monday, therefore I have not been that worried if he has not consumed all the allotted eggnog for the day, should we actually be deliberately reducing his calorie intake to compensate for the loss of usual activity.

5 ; KETONE LEVELS, we have been measuring measuring bhb levels via our blood ketone testing kit, we have been using the info from the post re the study done by Freeman and others, but have no other reference as to what we should be aiming for. The kit has been a godsend to help us judge periodically whether he is still in ketosis, but the hospital has no other info except the printout we took in. Does anyone who regularly tests bhb levels have anything I can take to them.

6 ; ACTH, had this steroid in Aug last year, and late July this year, his neuro originally said on Mon that this could be dangerous with chicken pox coming fairly soon after, but the endocrine team has said he should be okay without a steroid boost. He had a cortisol blood test on Tues, level was 600 odd, non fasting, they said this should mean he is okay, but I want to double check and see if anyone else may have been through this type of illness after a course of ACTH, as the virus itself appears a lot worse to me than it should be.

7 ; GLUCOSE, read with interest recent posts re glucose levels during illness, correlation with seizure control etc. usually hovers around 3.2 to 4.5. Today he was around 5.4, he hasn't been this high since starting the diet 3 months ago. Could this be a problem, and if so, what do I do about it when his ketones are already dicey.

8 ; MEDS, obviously he is having to have diazepam to attempt to curb the seizures, 5mgs IV is sending him to sleep for periods of up to 3 hrs. This has never happened to him pre diet, and when he wakes he is absolutely stunned, and still twitching to boot, helps the 'biggies', but not the rest. He seems to be building a tolerance, but we haven't really got any other option. I know the benzodiazepines, like phenobarbitol tend to sedate more on the diet, has anyone had this experience, if so, what did you do, when it is impossible to not try and break him out of the status, but possibly invoking toxicity at the same time.

Am I perhaps better to let him slip out of ketosis to take away these complications, meds etc, or will that make him even worse.

9 ; CHICKENPOX, please let me know any experiences of kids getting the chickenpox while on the diet, what worked or didn't work seizure wise, how long it took to get over them seizure wise etc, however depressing the answer may be. I'm beginning to get that horrible feeling that his seizure threshold may have been changed permanently, and that the short while we had of control may be gone for good.

Really sorry for the book like post, but a wee bit of a crisis happening here, he is worsening every day, I cannot even understand his speech anymore, feeling awfully panicky. How many damn mirrors did we break to deserve 2 doses of chickenpox on top of everything else I wonder.

Hill, mother to a very spotty and miserable in NZ

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-- BIG HUGS!!!

To be honest, I don't have many answers except on the

chicken pox. What people (especially neuros) fail to

realize is that if something is triggering seizures --

that's what needs to be addressed. All the drugs in

the world -- and the ketogenic diet -- is not going to

stop that. It may raise that thresh-hold a bit, but

with something like chicken pox -- which affects the

nerves -- it's not going to give you much protection.

Here's my guess -- he's probably had the chicken pox

in his system ever since your bout this spring.

Actually, the chicken pox is a virus that stays in all

or our systems once we've had it. That's why often

older adults who've had the chicken pox will develop

shingles -- and they're citing that as a future side

effect of the chicken pox vaccine. Now, something has

triggered his system so he's expressing the virus like

crazy.

This too shall pass. He will get back to the control

he had. But then -- what you need to do, if you can

-- is find someone who can help to " calm the virus. "

This is exactly what we've been dealing with with

. Once she got the chicken pox (and she was not

on the diet) -- her seizures went wild, landing her in

a status state on a respirator in the ICU. She also

has a form of the oral herpes virus (cold sores) which

is what triggered her seizures in the first place.

The chicken pox is also a form of the herpes virus --

herpes zoster.

We've been working with a homeopath and a naturopath

on this. The homeopath has given us homeopathic drops

which she takes each day and the naturopath has begun

working with a form of accupuncture with magnets that

helps " push the virus down. " You can't make it go

away, but you can help the body be more in balance to

better deal with the virus.

Obviously, this is not something you can do now.

Focus on getting him well and home -- again, this too

shall pass. Know that there are very few

conventionally trained MDs who are going to make this

correlation. Once he's stable -- I would try to seek

some alternatives and see if you can address the

underlying issue here, which is the virus (or perhaps

many viruses).

Hang in there. . . I really feel for you. This has to

be so difficult for you and for him. . . When had

the chicken pox, she only had a few spots, so I

thought she'd just had a light case. In reality, she

didn't express the virus in the right way and it

manifested in more seizures. It sounds very similar

to what you're dealing with with .

Take care and keep us posted. I need to run, but I'll

look over your e-mail later and see if anything else

" pops out. " --D

__________________________________________________

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Dear

So so sorry for what you and are going through

My gut is saying this is something you are going to have to ride out,

as awful as it is. Don't torture yourself by making long-term assumptions,

just deal with the moment. Other than watching the IVs and making sure

the antibiotics are carb-free, I don't have much to suggset. Cutting

back on calories shouldn't hurt and might help, poor little munchkin :(

richard & susan hill wrote:

Hello

all, been in hospital with , home for the night, just cleared 200

odd emails, really tired, but have to throw a few questions out tonight,

will try and check any replies from the hospital tomorrow.The

dreaded chicken pox started Friday, despite a dose in May, apparently mild

enough back then to give no immunity, even though the seizures were dreadful

that came with the few spots he did have. This dose is extremely severe,

he even has them between his teeth. I thought the control we'd had from

the diet might help him through, was I wrong.He

is struggling to maintain ketosis, but so far we have managed to avoid

a g-tube. Even when is ketones are okay, the seizures are relentless, continual

status, mouth and extremity twitching, with violent myoclonics periodically

thrown in. I have been frantically reading recent messages, picked out

a few things that may be relevant, as I am growing increasingly worried

that diet wise things are not the same as they were at home. I realise

he is bound to have lower ketones etc, but the state he is in is worsening,

when we would normally have expected an improvement by now. Here come the

questions, 1

; IV SALINE, he had a continual flow of 40 mls per hour overnight last

night, as he is not wanting to drink much , personally I don't think he

was showing any signs of dehydration, but went with the flow on that one.

Drew the line at adding dextrose, even though the Dr said one fifth was

okay diet wise. I see a recent post mentions the saline should be half

strength only, the hospital was not aware of this, neither was I, is this

important.Obviously

it is not normal to consume regular amounts of fluid overnight, could this

be throwing anything out, bearing in mind that the majority of calories

is by way of fluid eggnog.N.B,

having trouble with my keyboard, can't use the shift key every time, so

no question marks etc, 'scuse the puctuation' therefore. 2

; ANTIBIOTICS, 's tissue around his eyes has swelled, as did his

lips, I suspected an allergic reaction, but Drs think it is cellulitis,

staph infection secondary to the chicken pox. They put him on 'keflex',

other name 'cefalexin', does anyone know of this one, or any reason not

to use it.N.B,

I kicked a monitor in his hospital room on Tues, tiny puncture wound on

the top of my foot, couldn't walk an hour later, I too apparently have

cellulitis, and am supposed to be on bed rest to stop it spreading, YEAH

RIGHT. Mine is improving however, on penicillin that seems to be working. 3

; EGGNOG, he has been having this to get him through calorie wise, hospital

is following Freeman's mix of cream and egg only, he therefore has had

no oil for three days. My gut says this is not good, even though he is

having his usual ratio of fat etc. Any tips appreciated. 4

; CALORIES, has been completely immobile since Monday, therefore

I have not been that worried if he has not consumed all the allotted eggnog

for the day, should we actually be deliberately reducing his calorie intake

to compensate for the loss of usual activity. 5

; KETONE LEVELS, we have been measuring measuring bhb levels via our blood

ketone testing kit, we have been using the info from the post re the study

done by Freeman and others, but have no other reference as to what we should

be aiming for. The kit has been a godsend to help us judge periodically

whether he is still in ketosis, but the hospital has no other info except

the printout we took in. Does anyone who regularly tests bhb levels have

anything I can take to them. 6

; ACTH, had this steroid in Aug last year, and late July this year,

his neuro originally said on Mon that this could be dangerous with chicken

pox coming fairly soon after, but the endocrine team has said he should

be okay without a steroid boost. He had a cortisol blood test on Tues,

level was 600 odd, non fasting, they said this should mean he is okay,

but I want to double check and see if anyone else may have been through

this type of illness after a course of ACTH, as the virus itself appears

a lot worse to me than it should be. 7

; GLUCOSE, read with interest recent posts re glucose levels during illness,

correlation with seizure control etc. usually hovers around 3.2

to 4.5. Today he was around 5.4, he hasn't been this high since starting

the diet 3 months ago. Could this be a problem, and if so, what do I do

about it when his ketones are already dicey. 8

; MEDS, obviously he is having to have diazepam to attempt to curb the

seizures, 5mgs IV is sending him to sleep for periods of up to 3 hrs. This

has never happened to him pre diet, and when he wakes he is absolutely

stunned, and still twitching to boot, helps the 'biggies', but not the

rest. He seems to be building a tolerance, but we haven't really got any

other option. I know the benzodiazepines, like phenobarbitol tend to sedate

more on the diet, has anyone had this experience, if so, what did you do,

when it is impossible to not try and break him out of the status, but possibly

invoking toxicity at the same time.Am

I perhaps better to let him slip out of ketosis to take away these complications,

meds etc, or will that make him even worse. 9

; CHICKENPOX, please let me know any experiences of kids getting the chickenpox

while on the diet, what worked or didn't work seizure wise, how long it

took to get over them seizure wise etc, however depressing the answer may

be. I'm beginning to get that horrible feeling that his seizure threshold

may have been changed permanently, and that the short while we had of control

may be gone for good. Really

sorry for the book like post, but a wee bit of a crisis happening here,

he is worsening every day, I cannot even understand his speech anymore,

feeling awfully panicky. How many damn mirrors did we break to deserve

2 doses of chickenpox on top of everything else I wonder.

Hill, mother to a very spotty and miserable in NZ

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This reminds me, when Jess has chicken pox (pre-diet) (and seizures and

ear infection) they gave her the drug, is is zyclofir or something like

that, that they give to immuno-compromised people when they get chicken

pox. Might the be same drug you use for herpes outbreaks or similar name.

Anyway, they will probably tell you its too late (it is best given in first

24 or 48 hrs) but it still might make a difference. Jess had pox for 3

days before she got it and I beleive it did help. Then her baby sister

got them, she has excema and the pox got infected. So I had them give it

to her too. Once again, she didn't get the drug until having spots for

a few days but it still helped.

(((())))

DeEtte Person wrote:

-- BIG HUGS!!!

To be honest, I don't have many answers except on the

chicken pox. What people (especially neuros) fail to

realize is that if something is triggering seizures --

that's what needs to be addressed. All the drugs in

the world -- and the ketogenic diet -- is not going to

stop that. It may raise that thresh-hold a bit, but

with something like chicken pox -- which affects the

nerves -- it's not going to give you much protection.

Here's my guess -- he's probably had the chicken pox

in his system ever since your bout this spring.

Actually, the chicken pox is a virus that stays in all

or our systems once we've had it. That's why often

older adults who've had the chicken pox will develop

shingles -- and they're citing that as a future side

effect of the chicken pox vaccine. Now, something has

triggered his system so he's expressing the virus like

crazy.

This too shall pass. He will get back to the control

he had. But then -- what you need to do, if you can

-- is find someone who can help to "calm the virus."

This is exactly what we've been dealing with with

. Once she got the chicken pox (and she was not

on the diet) -- her seizures went wild, landing her in

a status state on a respirator in the ICU. She also

has a form of the oral herpes virus (cold sores) which

is what triggered her seizures in the first place.

The chicken pox is also a form of the herpes virus --

herpes zoster.

We've been working with a homeopath and a naturopath

on this. The homeopath has given us homeopathic drops

which she takes each day and the naturopath has begun

working with a form of accupuncture with magnets that

helps "push the virus down." You can't make it go

away, but you can help the body be more in balance to

better deal with the virus.

Obviously, this is not something you can do now.

Focus on getting him well and home -- again, this too

shall pass. Know that there are very few

conventionally trained MDs who are going to make this

correlation. Once he's stable -- I would try to seek

some alternatives and see if you can address the

underlying issue here, which is the virus (or perhaps

many viruses).

Hang in there. . . I really feel for you. This has to

be so difficult for you and for him. . . When had

the chicken pox, she only had a few spots, so I

thought she'd just had a light case. In reality, she

didn't express the virus in the right way and it

manifested in more seizures. It sounds very similar

to what you're dealing with with .

Take care and keep us posted. I need to run, but I'll

look over your e-mail later and see if anything else

"pops out."--D

__________________________________________________

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,

I have only a couple of comments......

On blood glucose levels..... when he are fighting any kind of infection, his sugar will run high.... it's not anything you are or aren't doing.... it's just the body's automatic reaction.

I think you're doing the best you can to keep him fed on the eggnog as is. It's your call on whether to cut calories for now but I wouldn't worry about it much. He's getting the right ratio.

Right now..... it's the virus that's the "biggie". The only thing I can suggest is colloidal silver. I don't know if it's available there..... but I know a friend in NZ who found it readily available at a local pharmacy. It helped her son get over a drug resistant form of staph that he contracted in hospital. See if you can get ahold of some. It can be used externally and taken orally..... but be prepared for the doctors to think you are nutty. It is harmless, however, (except to the virus and to any secondary bacteria) and won't interfere with the diet. You can do a search online and read far more about it. Go to your favorite search engine (mine is www.google.com ) and type : colloidal silver into the search box.

Hope that helps a bit. I don't have any wisdom on the med situation. Best of luck. Hope he's better very soon.

Patti

Lots about , chicken pox etc...

7 ; GLUCOSE, read with interest recent posts re glucose levels during illness, correlation with seizure control etc. usually hovers around 3.2 to 4.5. Today he was around 5.4, he hasn't been this high since starting the diet 3 months ago. Could this be a problem, and if so, what do I do about it when his ketones are already dicey.

8 9 ; CHICKENPOX, please let me know any experiences of kids getting the chickenpox while on the diet, what worked or didn't work seizure wise, how long it took to get over them seizure wise etc, however depressing the answer may be. I'm beginning to get that horrible feeling that his seizure threshold may have been changed permanently, and that the short while we had of control may be gone for good.

Really sorry for the book like post, but a wee bit of a crisis happening here, he is worsening every day, I cannot even understand his speech anymore, feeling awfully panicky. How many damn mirrors did we break to deserve 2 doses of chickenpox on top of everything else I wonder.

Hill, mother to a very spotty and miserable in NZ

"The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

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I can't really offer any answers as my son had chicken pox at 9 months

old - almost 3 yrs before he had his frist seizure.

I just wanted you to know that I am thinking about you and and

praying for a quick recovery for him so you can get him back home and stable

once again. Please keep us posted!

Jenn

DeEtte Person wrote:

-- BIG HUGS!!!

To be honest, I don't have many answers except on the

chicken pox. What people (especially neuros) fail to

realize is that if something is triggering seizures --

that's what needs to be addressed. All the drugs in

the world -- and the ketogenic diet -- is not going to

stop that. It may raise that thresh-hold a bit, but

with something like chicken pox -- which affects the

nerves -- it's not going to give you much protection.

Here's my guess -- he's probably had the chicken pox

in his system ever since your bout this spring.

Actually, the chicken pox is a virus that stays in all

or our systems once we've had it. That's why often

older adults who've had the chicken pox will develop

shingles -- and they're citing that as a future side

effect of the chicken pox vaccine. Now, something has

triggered his system so he's expressing the virus like

crazy.

This too shall pass. He will get back to the control

he had. But then -- what you need to do, if you can

-- is find someone who can help to "calm the virus."

This is exactly what we've been dealing with with

. Once she got the chicken pox (and she was not

on the diet) -- her seizures went wild, landing her in

a status state on a respirator in the ICU. She also

has a form of the oral herpes virus (cold sores) which

is what triggered her seizures in the first place.

The chicken pox is also a form of the herpes virus --

herpes zoster.

We've been working with a homeopath and a naturopath

on this. The homeopath has given us homeopathic drops

which she takes each day and the naturopath has begun

working with a form of accupuncture with magnets that

helps "push the virus down." You can't make it go

away, but you can help the body be more in balance to

better deal with the virus.

Obviously, this is not something you can do now.

Focus on getting him well and home -- again, this too

shall pass. Know that there are very few

conventionally trained MDs who are going to make this

correlation. Once he's stable -- I would try to seek

some alternatives and see if you can address the

underlying issue here, which is the virus (or perhaps

many viruses).

Hang in there. . . I really feel for you. This has to

be so difficult for you and for him. . . When had

the chicken pox, she only had a few spots, so I

thought she'd just had a light case. In reality, she

didn't express the virus in the right way and it

manifested in more seizures. It sounds very similar

to what you're dealing with with .

Take care and keep us posted. I need to run, but I'll

look over your e-mail later and see if anything else

"pops out."--D

__________________________________________________

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Love and hugs to you and to . What a mess! Wish I had some answers for you dear.

Prayers going up for you both.

(Hannah's mum, Australia)

Lots about , chicken pox etc...

.............

Really sorry for the book like post, but a wee bit of a crisis happening here, he is worsening every day, I cannot even understand his speech anymore, feeling awfully panicky. How many damn mirrors did we break to deserve 2 doses of chickenpox on top of everything else I wonder.

Hill, mother to a very spotty and miserable in NZ

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,

Hope gets over this crisis with the chickenpox soon.

Rohan used cephalexin for an ear infection a few months

ago. We didn't see any adverse reactions.

Re the ACTH. I 've heard it lowers the immunity to to infections.

Sorry I can't be of more help.

Saro...Rohan's mum

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Before you put your child on colloidal silver please check out this link.

I got this from another epilepsy group I am in. If this link doesnt

come up please let me know.

http://www.quackwatch.com/01QuackeryRelatedTopics/PhonyAds/silverad.html

Jenn

Patti wrote:

, I

have only a couple of comments...... On

blood glucose levels..... when he are fighting any kind of infection, his

sugar will run high.... it's not anything you are or aren't doing.... it's

just the body's automatic reaction. I

think you're doing the best you can to keep him fed on the eggnog as is.

It's your call on whether to cut calories for now but I wouldn't worry

about it much. He's getting the right ratio. Right

now..... it's the virus that's the "biggie". The only thing I can suggest

is colloidal silver. I don't know if it's available there..... but I know

a friend in NZ who found it readily available at a local pharmacy. It helped

her son get over a drug resistant form of staph that he contracted in hospital.

See if you can get ahold of some. It can be used externally and taken orally.....

but be prepared for the doctors to think you are nutty. It is harmless,

however, (except to the virus and to any secondary bacteria) and won't

interfere with the diet. You can do a search online and read far more about

it. Go to your favorite search engine (mine is www.google.com

) and type : colloidal silver into the search box. Hope

that helps a bit. I don't have any wisdom on the med situation. Best of

luck. Hope he's better very soon. Patti

Lots about ,

chicken pox etc...

7 ; GLUCOSE, read with

interest recent posts re glucose levels during illness, correlation with

seizure control etc. usually hovers around 3.2 to 4.5. Today he

was around 5.4, he hasn't been this high since starting the diet 3 months

ago. Could this be a problem, and if so, what do I do about it when his

ketones are already dicey. 8

9 ; CHICKENPOX, please let me know any experiences of kids getting the

chickenpox while on the diet, what worked or didn't work seizure wise,

how long it took to get over them seizure wise etc, however depressing

the answer may be. I'm beginning to get that horrible feeling that his

seizure threshold may have been changed permanently, and that the short

while we had of control may be gone for good. Really

sorry for the book like post, but a wee bit of a crisis happening here,

he is worsening every day, I cannot even understand his speech anymore,

feeling awfully panicky. How many damn mirrors did we break to deserve

2 doses of chickenpox on top of everything else I wonder.

Hill, mother to a very spotty and miserable in NZ

"The Ketogenic Diet....a realistic treatment option, NOT

just a last resort!"

List is for parent to parent support only.

It is important to get medical advice from a professional keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

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Just so everyone knows...... the quackwatch guy does not have a very *reputable* reputation himself. I'd recommend checking with a naturopath if you're doubtful or have questions. There is a lot of very well documented research in favor of colloidal silver and not a whole lot out there (even on the net) that is negative..... except for this guy. The article he posts about the woman whose skin turned gray refers to a woman who was given a very concentrated form of silver nitrate, over long periods of time, for sinus infections as a child..... back in like the 1940s. Silver nitrate was still used as late at the 1970s in drops that they put in newborn babies eyes because it was so effective at killing bacteria. Colloidal forms of silver (totally different from silver nitrate) as we have it today were not available then. The silver concentration in silver nitrate.... and the particular form that it's in..... cause the silver to concentrate in the tissues when used heavily and repeatedly over many years. This does not appear to happen, as far as all the current researchers can tell, with the colloidal form because the particles are too small and the low concentrations that are usually recommended contain very little actual silver. Everyone needs to research it for themselves and use it with their own discretion when it comes to taking it internally...... using it externally or as a gargle or mouth rinse is very safe.

Patti

Re: Lots about , chicken pox etc...

Before you put your child on colloidal silver please check out this link. I got this from another epilepsy group I am in. If this link doesnt come up please let me know. http://www.quackwatch.com/01QuackeryRelatedTopics/PhonyAds/silverad.html Jenn

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On Sat, 15 Dec 2001 00:12:37 -0600 heppner1@... writes:

>Before you put your child on colloidal silver please check out this

>link. I got this from another epilepsy group I am in. If this link

>doesnt come up please let me know.

I too have had way to many excellent experiences with Colloidal silver to

believe that it doesnt work. My two younger kids havent been to a

doc or been on antibiotics in a long long time.(well except when

my daughter had an allergic reaction to a spider bite) Karrah is 6

and hasnt been since she was 1!!! I believe this is due to

naturopathics that I got into because of .

You have to remember these warnings come from the same people

who deny the effects of immunizations and Mercury...I mean what

is gonna happen to their big business (medical profession) when

people discover that there are inexpensive alternatives!!

ok...just my .02

never mind...

Barb

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