2 questions

[Guest guest]

In a message dated 10/20/04 8:03:19 AM Central Daylight Time, caridib@...

writes:

> My 13 year old has started his treatments for lyme 3 weeks ago. He was ok

> for

> the first 2 weeks, but now his stomach is a mess--severe abdominal pain,

> trips to the bathroom 4-6 times per day, no appetite, etc. I give him

> acidopholus,

> but he is really suffering at this point. I have taken him off the meds

> temporarily and am waiting for a call from his neurologist. He is taking

> ceftin and

> doxy. Any suggestions? Also, my 16 year old son has been on treatment for

> CNS

> lyme for 6 months now. His neurologist has given him a note regarding

> extended time to take the SAT's. He is in a private school, so he does not

> have a 504

> plan. The college board said " NO " to the extended time, unless he goes

> through a whole battery of psychological tests to determine IQ, areas of

> deficit,

> etc. Does anyone have experience with test accomodations that can help here?

> I

> refuse to put him through one more thing, so the testing is out of the

> question. He has a documented disease with significant short term memory

> issues. Any

> advice?

> Betsy

>

>

> Dear Betsy:

I am a 72 year old male with Lyme disease since 1994. I have found that the

best treatment is with a combination of herbal treatment and with regular

medication.

I was helped by a certified natural health care professional more than by the

best LLMD in the business.

I realize you are scared and want to believe the doctors. I fully understand

why you are scared. I myself was scared when I came to realize that Chronic

Lyme disease is nearly incurrable.

I don't usually try to give any advice on the Lyme Aid network, nor do I read

many of the messages, but it was a life saver for me at my greatest time of

need. I don't try to give any help because most people are afraid to listen,

and I can fully understand because Lyme is one of the most frightening

diseases.

I would recommend you call Sue Massie who is my Health Care Provider. She

has a husband and 6 children including herself all with Lyme. She may or may

not be able to help you with info about school, but she sure knows a lot about

Lyme.

Her number is 732 241 2452. She lives in Fair Haven, NJ

My number is 732 297 9678. Feel free to call me if you think I might be of

help and you can reverse the charges or I guess call collect is a better term.

God Bless you and your children. I pray for all Lyme victims every night.

> Sidney B. Gilliam

> North Brunswick, NJ 08902

[Guest guest]

Betsy,

Sidney is right. You don't have to keep your son ill on top of his lyme by

trying to keep him on anti-biotics if that route is making him worse. First --

do no harm. I have been taking anti-microbial herbs for around a year. I

started out on abx as well. I would challenge anyone to find abx that work

better than the herbals. But diet is extremely important as well as detoxing.

They are without a doubt whatsoever just as important, if not more, than

anti-microbials.

I am not saying to sidestep your dr. Just consider the options. A good starting

point is to put him on Samento. Take him off all forms of sugars, nuts and carbs

-- including fruits. Lots of vegetables, meat/fish is ok. But not too much as

you want to get the body alkaline. Also, chlorella if he can handle it for

detox. If not, kaolin clay or bentonite. Lots of probiotics.

These will not interfere with what you are doing now (However the clays may if

taken together with medicine). You can work up to Olive leaf extract, garlic,

and grapefruit seed extract. Also, oregano oil, if he can handle it. Only add

these slowing so the body can maintain homeostasis and adjust to the herx

reactions.

Best of luck,

Craig

Craig

caridib@... wrote:

My 13 year old has started his treatments for lyme 3 weeks ago. He was ok for

the first 2 weeks, but now his stomach is a mess--severe abdominal pain,

trips to the bathroom 4-6 times per day, no appetite, etc. I give him

acidopholus,

but he is really suffering at this point. I have taken him off the meds

temporarily and am waiting for a call from his neurologist. He is taking ceftin

and

doxy. Any suggestions? Also, my 16 year old son has been on treatment for CNS

lyme for 6 months now. His neurologist has given him a note regarding

extended time to take the SAT's. He is in a private school, so he does not have

a 504

plan. The college board said " NO " to the extended time, unless he goes

through a whole battery of psychological tests to determine IQ, areas of

deficit,

etc. Does anyone have experience with test accomodations that can help here? I

refuse to put him through one more thing, so the testing is out of the

question. He has a documented disease with significant short term memory issues.

Any

advice?

Betsy

[Guest guest]

i had a lot of problems on ceftin (severe colitis that was very dangerous)

and I couldn't tolerate doxy for more than a week ... couldn't even get off

the bed on it but zithromax did wonders for me .... flagyl helps me too ...

has the doctor tried any other meds besides the ceftin and doxy ? jaqui

Re: [ ] 2 questions

>

>

> Betsy,

>

> Sidney is right. You don't have to keep your son ill on top of his lyme

> by trying to keep him on anti-biotics if that route is making him worse.

> First -- do no harm. I have been taking anti-microbial herbs for around a

> year. I started out on abx as well. I would challenge anyone to find abx

> that work better than the herbals. But diet is extremely important as

> well as detoxing. They are without a doubt whatsoever just as important,

> if not more, than anti-microbials.

>

> I am not saying to sidestep your dr. Just consider the options. A good

> starting point is to put him on Samento. Take him off all forms of sugars,

> nuts and carbs -- including fruits. Lots of vegetables, meat/fish is ok.

> But not too much as you want to get the body alkaline. Also, chlorella if

> he can handle it for detox. If not, kaolin clay or bentonite. Lots of

> probiotics.

>

> These will not interfere with what you are doing now (However the clays

> may if taken together with medicine). You can work up to Olive leaf

> extract, garlic, and grapefruit seed extract. Also, oregano oil, if he

> can handle it. Only add these slowing so the body can maintain

> homeostasis and adjust to the herx reactions.

>

> Best of luck,

>

> Craig

>

> Craig

>

> caridib@... wrote:

> My 13 year old has started his treatments for lyme 3 weeks ago. He was ok

> for

> the first 2 weeks, but now his stomach is a mess--severe abdominal pain,

> trips to the bathroom 4-6 times per day, no appetite, etc. I give him

> acidopholus,

> but he is really suffering at this point. I have taken him off the meds

> temporarily and am waiting for a call from his neurologist. He is taking

> ceftin and

> doxy. Any suggestions? Also, my 16 year old son has been on treatment for

> CNS

> lyme for 6 months now. His neurologist has given him a note regarding

> extended time to take the SAT's. He is in a private school, so he does not

> have a 504

> plan. The college board said " NO " to the extended time, unless he goes

> through a whole battery of psychological tests to determine IQ, areas of

> deficit,

> etc. Does anyone have experience with test accomodations that can help

> here? I

> refuse to put him through one more thing, so the testing is out of the

> question. He has a documented disease with significant short term memory

> issues. Any

> advice?

> Betsy

>

>

>

>

>

>

> Questions and/or comments can be directed to the list owner at

> -Owner

>

>

[Guest guest]

Jaqui-

Thanks for your reply. Mike has only been on these 2 meds-doxy and ceftin. I

took him off them temporarily. I did try amoxicillin for 2 days, but got the

same result immediately. I think the ceftin and doxy have wreaked havoc on his

intestinal system. I hope I haven't caused him any permanent damage by

allowing these meds. I love the info regarding natural treatments that people

have

been forwarding to me. Maybe that is what I need to look into. My other son has

severe problems with all the abx, too. He is currently on plaquinil for his

autoimmune issue. He is tolerating this well. This is too much!!!!!! I hate this

disease! Anyway, thanks for your help--

Betsy

[Guest guest]

Sidney-

Thanks for your insight. I hear so many people talk about how long they have

had this stinking disease. Does anyone ever get better? Sometimes I think that

all the time and energy I put into trying to help my children will never

amount to a hill of beans. Maybe I'm just sitting on the pity pot for them for a

few minutes. Wouldn't it be great to get an email that said " Try this and

they'll be better! " Oh well, I will definitely look into some of the natural

stuff.

That is actually what I was hoping to gain from my email. I have been trying

to do research regarding alternative treatments/supplements. I appreciate the

information that you provided, and especially appreciate your kindness. Be

well-

Betsy

[Guest guest]

Hi Betsy,

My daughter has never been able to tolerate doxy. Some people are better

able to use Doryx, it is supposed to be easier on the stomach. Kate didn't

notice much difference and eventually was switched to Bicillin, which she

tolerated very well. If your son has been on Doxy for three weeks, that's

long enough to give it a fair try - ask your doctor for something different,

there are many different abx they use.

I agree with the gentlemen that there is the natural option and Sue Massie

is extremely knowledgeable and helpful (she just messaged that she had to

leave town for a family emergency for a short while). I was very interested

in that option for my daughter, but she and her father both felt that they

wanted to stick with the medical protocol first and then try holistic if

this didn't work. I felt she should have a say in what happens to her body

and honored her choice.

As for the school fight, it is not easy. I am emailing separately a fairly

lengthy article that may help. Also, you may want to join the Polk

(Parents_of_Lyme_Kids ). Some of those parents have more

information on dealing with schools.

I, too, would be happy to talk off line if that would help, and my daughter,

who is just eighteen and has had Lyme for at least six years, would talk

online with you sons if that would give them encouragement (or a place to

vent!).

My very best to you all -

Carol

cf@...

[Guest guest]

Our son eats homemade popsicles 24/7, even in the winter. His

doctor thinks it's his reaction to internal heat from mercury

poisoning. Remember if chelating, remove viruses at same time with

homeopathy or silver. Keep bowel and liver clean with magnesium,

vitamin C, butyrate (sp.?) Make sure his stools are dark.

Jill

>

> 1:anything about ice chewing, my 7yr old loves to chew ice, will

get

> himself a big glass of large ice and go sit down and chew it,

> especially if he's watching tv. i know there's a relation with

> anemia, but not sure - he's pretty active kiddo. thought it might

be

> a sensory thing since he's got mild autism and lots of sensory

> issues.

>

> 2:reading the messages about gse over long periods. i've been

giving

> my son 1 no-fenol and 2 gse twice a day for about 3-4 weeks. last

2

> days he has been more emotional/frustrated. but his communication

> keeps getting better and better. should i switch off of the gse

for

> awhile and use something else for a yeast killer? we still have

> yeast signs, redness in creases in groin area. and we JUST got his

> bowels moving again - YEAH! - with the addition of magnesium. lots

> going on.

>

> thank you so much. this group has really helped me and my son -

> thank you

[Guest guest]

Hi

In my notes all I have re chewing ice is the following - which accounts for

the anaemia association you speak of.

Chewing ice can be a sign of an iron deficiency. -GA

_____

>

> 1:anything about ice chewing, my 7yr old loves to chew ice, will

get

> himself a big glass of large ice and go sit down and chew it,

> especially if he's watching tv. i know there's a relation with

> anemia, but not sure - he's pretty active kiddo. thought it might

be

> a sensory thing since he's got mild autism and lots of sensory

> issues.

[Guest guest]

> 2:reading the messages about gse over long periods. i've been giving

> my son 1 no-fenol and 2 gse twice a day for about 3-4 weeks. last 2

> days he has been more emotional/frustrated. but his communication

> keeps getting better and better. should i switch off of the gse for

> awhile and use something else for a yeast killer?

I would consider doing that.

Dana

[Guest guest]

thanks for the reply jill.

we are using a homeopathy to detox metals, but i'm not sure we're

romoving viruses at the same time? can you elaborate?

we are using magnesium (now) and its working wonderfully, but his

stools are not dark. they need to be?

and what is butyrate?

thanks again

mj

>

> Our son eats homemade popsicles 24/7, even in the winter. His

> doctor thinks it's his reaction to internal heat from mercury

> poisoning. Remember if chelating, remove viruses at same time

with

> homeopathy or silver. Keep bowel and liver clean with magnesium,

> vitamin C, butyrate (sp.?) Make sure his stools are dark.

>

> Jill

>

>

[Guest guest]

Dear MJ:

Dr. Kane talks about butyrate to clean the liver:

http://www.springboard4health.com/notebook/health_autism.html

And, here is something about viral and metal detox at the same time:

http://www.autismanswer.com/articles/yasko/approach_to_reversing.html

To kill viruses you can use collodial silver and/or homeopathy.

Dark stools indicate that the liver is probably functioning

properly. This is important because otherwise you risk the body

reabsorping toxins.

Hope this is helpful, Jill

> >

> > Our son eats homemade popsicles 24/7, even in the winter. His

> > doctor thinks it's his reaction to internal heat from mercury

> > poisoning. Remember if chelating, remove viruses at same time

> with

> > homeopathy or silver. Keep bowel and liver clean with

magnesium,

> > vitamin C, butyrate (sp.?) Make sure his stools are dark.

> >

> > Jill

> >

> >

[Guest guest]

>>> 1:anything about ice chewing,

Does he chew anything else? If he just likes to chew on things, it

might be a magnesium or zinc mineral deficiency. My older son (and I)

like to chew on things. I chewed crushed ice a lot when I was

younger. Magnesium and zinc both helped. You might want to try one

and then the other before trying both together. Pick a form of the

minerals that is not oxide or carbonate as they forms are not as

absorbable.

.

[Guest guest]

The white basmati rice would likely be best avoided until you feel better.

The water kefir I belive is ok although I usually do the other kind.

As for betonite. If it's in the powder form you'll have to hydrate it first

before you take it. If you're using this as part of a colon cleanse then take it

with psyllium (if you have no allergy to that) in the form of a P & B shake. Check

out the curezone site for more info on these for cleaning out your colon. I did

them for 6 weeks following one of the methods on the curezone site. You start

out slowly with one or 2 a day. I usually took one in the morning and one in the

evening.

If you want to know more let me know and I'll post you some more info on what I

followed when I was doing these.

Cheers

Sue

tazeem <tazeem99@...> wrote:

2 questions

__________________________________________________

[Guest guest]

Hi Mark

White basmati rice is easily digestable and might not bother you. Try

a small amount and see. You can also try muscle testing it first.

Check the files section of this group to learn how to muscle test, or

google it.

I love basmati rice with tumeric, green cardamom pods and cloves.

Yummy

Rick

> 2 questions

>

> Can anyone tell me whether this two things are allowed

> on candida diet:

> White basmati rice and if yes in which quantities

> Water kefir refreshing drink (homemade with real kefir

> grains) according to DOM's site recipe.

>

> Also what is the best way to consume bentonite powder

> (the only form of bentonite clay I have been able to

> find in UK) and when to take it (before, after the

> meal)

>

> Thank you

> Mark

>

>

>

>

>

> ___________________________________________________________

> Messenger - NEW crystal clear PC to PC calling worldwide with

voicemail http://uk.messenger.

[Guest guest]

HELLO SANDY

WE LIVE IN NEW MEXICO AND MY SON GET SSI WE HAD TO APPEAL LIKE THREE TIMES AND

THE ENTIRE PROCESS TOOK ALMOST THREE YEARS BUT WE FINALLY GOT IT AND WE ARE IN

THE PROCESS OF GETTING RESPITE .

Sandy <sandy1122@...> wrote:

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

My son got SSI within a month, last march. No appeals no arguments,

automatic... weird

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

Does anyone know how to apply or what the income restrictions are? I am a single

parent on a low /moderate income (I am 2k annually over the restricted income

level for my area, KS) and get dribs and drabs of child support from ex-hubby

(can never rely on it). I could really use extra help to pay for extra therapy.

Thanks

Tami Ober <nyx@...> wrote:

My son got SSI within a month, last march. No appeals no arguments,

automatic... weird

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

we get SSI but because of her MR dx, not her AS

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

What states are you in?

We were denied SSI for , we (parents) make too much money. You

have to be able to qualify for even $1 and you can receive services.

Cori

>

> My son got SSI within a month, last march. No appeals no

arguments, automatic... weird

> ( ) 2 Questions

>

>

> Does anyone get SSI for their child with Asperger's? I heard

that

> it's possible. How about Respite?

>

>

>

>

>

>

[Guest guest]

call your dept. of soc. security for an application.

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

NC here. Like I said, we were denied for AS but accept due to her MR.

( ) 2 Questions

>

>

> Does anyone get SSI for their child with Asperger's? I heard

that

> it's possible. How about Respite?

>

>

>

>

>

>

[Guest guest]

Thx, but I don't have a diagnosis for him yet. The neurologist I saw says he

fits mostly the autism spectrum in all ways except that he maintains eye contact

and is social/will interact. He will not diagnose him because of this. He does

say that he is 2 years delayed in speech and is cognitively impared and has

major fine motor problems. He prescribed him Tenex to calm him down. His

teachers and therapists are pretty sure that he has high functioning autism, but

obviously are not qualified to diagnose. We are going for a second opinion at KU

but the wait is six months. Do I have to have a diagnosis to qualify for SSI to

help pay for extra services? He has an I.E.P, psychologist and is in the E.C.D

Class at our local elementary school.

Thanks

Faulkner <mkisses@...> wrote:

call your dept. of soc. security for an application.

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

I'm sorry, I am not sure... we are at like under 10k a year for income, no child

support...

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

What's SSI?

Tami Ober <nyx@...> wrote: I'm sorry, I am not sure... we are at

like under 10k a year for income, no child support...

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?

[Guest guest]

Apply anyways.. And if they refuse you.. Fight it!

-- Re: ( ) 2 Questions

I'm sorry, I am not sure... we are at like under 10k a year for income, no

child support...

( ) 2 Questions

Does anyone get SSI for their child with Asperger's? I heard that

it's possible. How about Respite?