Basic Questions

December 29, 2004

whether you have Lyme disease or not, I would strongly urge you to take

Doxycycline at 200 mg for 60 days- that would be 100 mg twice a day. If you

have short term Lyme disease this should provide you a cure. If you have long

term Lyme disease you are going to have a lot of trials and tribulations as

there is not much chance for a cure at this time. With the proper guidance,

however, you will be able to lead a near normal life by taking the Lyme Bacteria

fighting materials available. I have found that alternative medicine seems

to be best, but regular medicine must be first used to get the bacteria out of

your blood stream. unfortunately, the long term bacteria will stay in the

cell membrains where medicine can not reach it and it keeps coming out. For

more

info contact me directly.

God bless and good luck!

Sidney

December 29, 2004

HI ,

I am new here too. Where did your test results come from? ( what

lab?) Also, do you know that Amoxicillan is the weakest form of

antibiotics, they give it to babies and kids with ear infections, etc.

It never worked on my girls we always had to go up to the next

stronger version which is not really any good for Lyme anyway. I

applaud your Dr. for diagnosing you so soon, but think you should

either do your own research on the web and take it to the Dr.- about

what you should really be on and for how long (not just one or two

months - if you don't want to end up like some of us with chronic

cases), or go to a LLMD (Lyme Literate Medical Doctor). If you choose

to do that, let me know and I'll send you a phone number where you can

tell them what part of the country you live in, etc. and they will

call you back with several names and numbers for you to call and

schedule an appt with one of them. Personally, I'd do the reasearch

and ask my regular Dr. to prescribe the right stuff and then make the

appt. with an LLMD. There is a great info site called Ilads, check it

out.

Take care,

>

> Hi, my name is McGillycuddy and I'm 38 years old. Recently I

> have been feeling tired (I'm sure you know the feeling). I went to

> the Doctor and he had me go for blood tests.

>

> I got my blood test back from the Dr today. He said it showed a

> positive for Lyme (the first six months, but negative for Lyme after

> six months). He believes that we have a very good chance of

> treating it with antibiotics for a month. On his advice I'm still

> going to follow up with a Neurologist. He advised me to go to the

> Neurologist and not to tell him about the results of the Lyme test.

>

> My question for the group is does anyone know the probability of a

> false positive testing for Lyme. The Lyme tests were Lyme Disease

> Screen w/ Relex to WB and Lyme Disease AB, lgG & lgM WB.

>

> Anyway, I've been feeling a little better everyday and started

> amoxicillin twice a day for the next 30 days.

>

> Thanks for everyone's support!

>

December 30, 2004

,

Could you provide me with the phone number of how to find a Lyme

Literate Medical Doctor in my area.

Thank you,

Cher

January 5, 2005

,

Thanks.

Yes. Can you send me the information on how I can get the best Lyme

doctor. You can email me @ @....

Thanks for the support.

> >

> > Hi, my name is McGillycuddy and I'm 38 years old.

Recently I

> > have been feeling tired (I'm sure you know the feeling). I went

to

> > the Doctor and he had me go for blood tests.

> >

> > I got my blood test back from the Dr today. He said it showed a

> > positive for Lyme (the first six months, but negative for Lyme

after

> > six months). He believes that we have a very good chance of

> > treating it with antibiotics for a month. On his advice I'm

still

> > going to follow up with a Neurologist. He advised me to go to

the

> > Neurologist and not to tell him about the results of the Lyme

test.

> >

> > My question for the group is does anyone know the probability of

a

> > false positive testing for Lyme. The Lyme tests were Lyme

Disease

> > Screen w/ Relex to WB and Lyme Disease AB, lgG & lgM WB.

> >

> > Anyway, I've been feeling a little better everyday and started

> > amoxicillin twice a day for the next 30 days.

> >

> > Thanks for everyone's support!

> >

January 5, 2005

Sidney,

Thanks for responding. I would like to learn more about the right

treatment. Can you contact me directly at @....

Or what is the best way for me to contact you directly?

Thanks,

> whether you have Lyme disease or not, I would strongly urge

you to take

> Doxycycline at 200 mg for 60 days- that would be 100 mg twice a

day. If you

> have short term Lyme disease this should provide you a cure. If

you have long

> term Lyme disease you are going to have a lot of trials and

tribulations as

> there is not much chance for a cure at this time. With the proper

guidance,

> however, you will be able to lead a near normal life by taking the

Lyme Bacteria

> fighting materials available. I have found that alternative

medicine seems

> to be best, but regular medicine must be first used to get the

bacteria out of

> your blood stream. unfortunately, the long term bacteria will

stay in the

> cell membrains where medicine can not reach it and it keeps coming

out. For more

> info contact me directly.

>

> God bless and good luck!

>

> Sidney

>

September 5, 2006

It's probably a bit too low of a dosage you are using Dave for an 11 YO. 2

capsules is what many start 2 year olds on -and today in this group

most are using 2 capsules of the ProEFA and 1 of the ProEPA 3 times

a day with 2 and 3 year olds! With success too!! And...the natural

alpha and gamma E about 400 IUs/mg

The fact you have seen a little surge on the low dosage is

awesome...keep us posted on the future good news ahead!!

Below is an archive on more...

The following is an old EFA archive from this group which has worked

in this group for years so it's up on the Speechville message

board.

Recently there are a few members who are staying with the same

formula -but raising the dosage to multi dosing two to three times a

day and anecdotally they are observing even more dramatic and

accelerated surges. Due to recent messages I want to clarify that

the following was for the average new member who in the majority

will have a child that is 2 to 4 years old. If your child is around

5 or older you will probably want to start at one a day just for a

week or so and then increase right away to two. Not that you won't

see any changes on the lower dosage but for older children the one a

day (which is comparable to the dosage in infant formula) may not be

enough. Also most see the first plateau somewhere between 3-6

months and the second somewhere between 6 months to a year following

the lower dosage way. We don't know yet as a group if and when

plateaus are reached with higher dosage supplementation. If however

you hit a plateau at any point -you probably want to look to

increase dosage -especially if you are at one a day with a 4 year

old say.

You can run by your child's MD -start with the basic and observe and

go from there. With fish oils typically the changes are within one

day to three weeks almost across the board -so you'll know pretty

soon whether it's " working " ! Let us know the good news!

From

http://www.speech-express.com/boards/viewtopic.php?t=620

What fish oil should I give to my baby?

What fish oil should I give to my child?

The confusion is more the brand names than the formulas. In

actuality there really is no such thing as a " children's EFA "

perfect for all children yet. However fish oils can be marketed to

children by making fun flavorings and smaller capsules. Most of

the parents I know squeeze the oil out of the capsule anyway -so

that's besides the point for most of our group.

EFAs are now in baby formula and food, and EFAs come and are used in

a variety of formulas for children for various reasons. Mainly we

hear about the use of them for healthy brain development in regards

to children -but they are even proven to help prevent asthma

http://www.theage.com.au/articles/2004/02/20/1077072840758.html

And they may be coming to a school lunch near you -if you live in an

area of savvy parents

http://www.valleystar.com/localnews_more.php?id=51945_0_19_0_C

Regarding your specific question: (and to answer your question

Chris)

ProEFA is an Omega 3 (DHA and higher EPA) formula with a small

amount of Omega 6 (GLA) The Omega 3 in the ProEFA is from fish oil -

not from the liver of the fish -so no vitamin A. Only fish oil made

from the

liver of the fish contain vitamin A.

Children's DHA is cod liver oil which since it's from the liver of

the cod fish, it naturally contains Vitamin A. Cod liver oil only

contains Omega 3 (DHA and EPA) about that point:

" Most of our experience is with one, 1.0 gram capsule of ProEFA

(Complete Omega) that contains 144 mg EPA, 99 mg DHA and 40 mg of

GLA. We know that this combination appeared to work well. There

were some other supplements used but we could not conclude anything

about them. I can only say that both EPA and DHA are important and

GLA appears to have an additional positive effect on speech.

ALA, linoleic and oleic acids in " The Total Omega " contribute very

little to the EPA, DHA, and GLA effect.

I see at least 2 possibilities that you could use if you decide to

make the transition from short-chain omega-3s in plants (flax seed

oil containing alpha-linolenic acid or ALA, C18:2n-3) to the long-

chain mixture of EPA (C20:5n-3) and DHA (C22:6n-3). These are DHA

Jr. (30 mg DHA and 20 mg EPA in a serving unit) and Coromega (350 mg

EPA and 230 mg DHA). Both of these have been anecdotally successful

in the past.

Coromega can be divided in two and taken one half in the morning the

other in the evening. If you choose this mode you will provide your

son with the equivalent EPA+DHA of 2 ProEFA capsules per day without

the GLA.

Flax seed oil or freshly ground flax seeds are an excellent source

of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is

the quintessential parent member of the omega-3 family of essential

fatty acids (EFAs). The body transforms it into EPA and the EPA

into DHA. This transformation is very inefficient (the yield is

about 10%) and is further inhibited by over consumption of omega-6

fatty acids from most vegetable oils or certain disease states.

Therefore, it is advisable to independently consume also ready made

EPA and DHA from good quality fish of from high quality fish oil

supplements. Some recommended intakes are listed on the

Introductory lecture on EFAs that I gave at the First Conference on

Therapy of Verbal Apraxia, July 23-24, 2001, town, NJ. (

http://www.cherab.org/news/scientific.html )

The CHERAB Foundation's positive research results on potential

improvement in speech following EFA supplementation are based

on the use of ProEFA (Complete Omega) and that contains also

another essential fatty acid, GLA which is an omega-6 fatty acid.

The latter appears to be beneficial to children with apraxia. It is

not present in flax seed/flaxseed oil.

None of these materials present with any known side effects or

known toxicity in an otherwise healthy person. Nevertheless, we

advise every user of supplements to use them under medical

supervision. We don't know your child and we cannot provide you

with medical advice.

Sincerely,

Katz, Ph.D. "

About mercury and fish oil (vs. eating fish)

" Fish oils have been tested for various heavy metals like mercury

and there has been enough preliminary proof through studies, as well

as theory from reputable sources, that as I've posted many times

I've heard that the oils from fish may be the safest way to get the

benefits of the EFAs without the toxins due to the fact that mercury

etc. binds to the proteins/muscles of the fish.

" Measurement of mercury levels in concentrated over-the-counter fish

oil preparations: is fish oil healthier than fish? "

" CONCLUSIONS: Fish are rich in omega-3 fatty acids, and their

consumption is recommended to decrease the risk of coronary artery

disease. However, fish such as swordfish and shark are also a source

of exposure to the heavy metal toxin, mercury. The fish oil brands

examined in this manuscript have negligible amounts of mercury and

may provide a safer alternative to fish consumption. "

Division of Laboratory Medicine, Department of Pathology,

Massachusetts General Hospital and Harvard Medical School, Boston,

Mass 02114, USA.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=1\

4632570 & dopt=Abstract

And one other thing to keep in mind for those like me who do eat

both fish and take fish oil, there are toxins in the fish you eat

that won't be in the oil For example while mercury etc. binds to

the protein (muscle of the fish) so it's not in the oil of the

fish. From what I've read -the largest problem with fish oil itself

is rancidity. Oxygen and fish oil doesn't mix well.

Consumer Reports had this to say (most likely because toxins in

many cases bind to the protein and most oils are not tested for

rancidity)

" Consumer Reports tested 16 top-selling fish-oil pills which, like

other supplements, aren't closely regulated by the FDA.

Consumer Reports' Metcalf says the test results are

reassuring, " We found that all 16 brands that we tested had the

amount of Omega-3s that they said they did, which is good news. And,

we don't always find that with supplements. "

Since fish can contain toxins, Metcalf says Consumer Reports also

checked the supplements for purity, " We tested for three kinds of

toxins that often appear in fish - mercury, dioxin, and PCBs. "

Testers didn't find significant levels of toxins in any of the pills

tested, so you don't have to worry about contaminants. "

http://abclocal.go.com/kfsn/features/consumerwatch/consumer_070303_omega3.html

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

" I had the wonderful opportunity to hear ph Hibbeln, M.D.,

Chief,

Outpatient Clinic National Institute of Alcoholism and Alcohol

Abuse, NIH, Bethesda, land at the First Apraxia Conference

http://www.cherab.org/news/scientific.htm lecture about the

importance of PUFA -especially during pregnancy when you are growing

a brain inside you. If you don't consume enough PUFAs while

pregnant -the babies body will pull it from the mother's body. It's

his theory and research as to why so many mom's experience post

partum depression. http://www.beachpsych.com/pages/cc46.html In

additionit is proven that the PUFAs are important for cognitive

ability.

http://neuroscience.nih.gov/Lab.asp?Org_ID=352

Here is a quote from the US Department of Agriculture,

Environmental Chemistry Laboratory, Agricultural Research Service,

20705, Beltsville, MD, USA

Brain-specific lipids from marine, lacustrine, or terrestrial food

resources: potential impact on early African Homo sapiens. The

polyunsaturated fatty acid (PUFA) composition of the mammalian

central nervous system is almost wholly composed of two long-chain

polyunsaturated fatty acids (LC-PUFA), docosahexaenoic acid (DHA)

and arachidonic acid (AA). PUFA are dietarily essential, thus normal

infant/neonatal brain, intellectual growth and development cannot be

accomplished if they are deficient during pregnancy and lactation.

Uniquely in the human species, the fetal brain consumes 70% of the

energy delivered to it by mother. DHA and AA are needed to construct

placental and fetal tissues for cell membrane growth, structure and

function. Contemporary evidence shows that the maternal circulation

is depleted of AA and DHA during fetal growth. Sustaining normal

adult human brain function also requires LC-PUFA.Homo sapiens is

unlikely to have evolved a large, complex, metabolically expensive

brain in an environment which did not provide abundant dietary LC-

PUFA.

http://www.unl.ac.uk/ibchn/e_Link/cbpbbmb2002.htm

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

Here is an archive answer to answer more on EFAs:

" I will use the following examples with the brand name ProEFA since

that's the formula/dosage that seems to work the best for most of us

(Efalex and EyeQ are similar Omega 3/6 formulas that also have good

reports) For any brand name of Omega 3/6 formula -you could make

the same formula by mixing together fish oil and either primrose or

borage seed oil if you prefer -or as found -another brand

name with a similar formula (and I hope also a good quality)

If you mix two fish oils together which is fine if you know why you

are doing that: Look at the amount of DHA, EPA (Omega 3) and the

amount of GLA (Omega 6) and then add them all together to see what

formula and dosage you now have is. So for those of you that ask -

you can mix any brand names together you would like -however what

you could change is the three things above (dosage, formula and

*quality (*if one of the companies you start using has rancid oils

which is not uncommon when it comes to fish oils -so make sure all

brands you use are pure) Keep in mind in anecdotal feedback done by

parents from all over through CHERAB -that pure Omega 3 or pure

Omega 6 either showed no results -or very little results in almost

all cases. Pure Omega 3 would include pure cod liver oil, fish oil,

flax seed oil without any Omega 6. So even though there is only a

small amount of GLA (Omega 6) in the formulas we found to be

successful -GLA appears to be important to be there for some

reason. GLA has anti-inflammatory properties which perhaps enable

to DHA and EPA to get to where it's needed in the brain?

Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

Here is what many of us have found to be the best plan

anecdotally:

....start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months.

At this point we raised the dosage to two capsules of ProEFA a day

and once again had those surges which lasted again for months.

When we reached the next plateau after around a year, instead of

going to three a day - we squeezed 1/2 to one capsule of ProEPA into

the 2 capsules of ProEFA and for almost all of us that try -that

created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio.

Most found raising the EPA vs. the DHA or GLA to be best -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her.

There is much more in the archives both here -as well as more

information at

http://www.cherab.org/information/indexinformation.html#diet

http://www.speechville.com

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe it's just a coincidence " However after the second or third

surge in a short period of time -and then another - you are pretty

sure things are different and it's at this point the professionals

and the rest of the family and your friends are noticing it too -

maybe about two to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no longer feel as desperate and want to share this new information

with everyone and anyone. As the months go by and your child

continues to progress at a much more rapid rate -you may even start

to doubt the original diagnosis -especially if you started EFA

supplementation at two -and perhaps the SLP that diagnosed the

apraxia who also was at first excited is starting to second guess if

the original diagnosis was correct as well.

Unless you have to stop the ProEFA (or other Essential Fatty Acids)

and literally have the chance to see the regression of acquired

speech and language skills, attempts, and changes in behavior like

we did with Tanner (and/or have a chance to again witness the second

surge when your child is put back on the EFAs) -that doubt will

probably remain somewhere in your mind and in others around your

child. So the " I told you that he would start talking when he was

ready " comments should be expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is

either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that helped in the beginning will still benefit your child today.

ProEFA alone is not the only answer and until we know how and why it

works (or why in a handful of children it doesn't) we can't improve

on it "

Know there is lots of information here -but if you have to learn

just one thing from all of this it's right up on top -there is

always hope!

EFA tips and sources

http://www.cherab.org/information/dietaryeffects/efatips.html

http://www.cherab.org/information/dietaryeffects/efabasics.html

=====

September 5, 2006

I would give more fish oil and, even more importantly IMO, carnaware -

carnaware can produce amazing changes in language (carnaware.com). I

saw a big difference after just a week, and I've heard other parents

say the same thing. I would also consider essential GSH (liposomal

glutathione) from wellnesshealth.com. Carnaware and the lipo glut

really got my daughter talking (she was diagnosed with ASD and apraxia).

I added extra vit E (400 IU) to my son's supps (above what he gets in

carnaware and his multi-vitamin) about a week ago, but have not

noticed any changes. But my son has only ASD, not apraxia.

>

> Hi,

>

> I have an 11 year old, 75 lb autistic son who has severe apraxia. I

can understand his speech for the most part but most strangers cannot

understand him. He uses an augmentative communication device that has

been very helpful.

>

> I started my son on ProEFA 2 capsules per day (1 am, 1 pm) 4 months

ago and noticed a slight improvement in my son's clarity of speech. I

was wondering if I am giving a good dose or if there any other things

I should try. I have read a few recent posts about vit E and

wondering if many are using these? Also, wondering if many list

members have tried different types of EFA's or different doses before

finding a combination that really works well. Thanks!

>

> Dave

>

September 6, 2006