intro

[Guest guest]

Donna,

Your partner is certainly lucky to have you, doing the research and

providing support. You've definitely come to the right place for that.

And, by the way, depression is actually one of the symptoms of these

illnesses (chronic pain can cause chemical imbalances in the brain that

bring on depression, never mind having to give up activities you enjoy),

so we deal with that, too. Since your partner has been recently

diagnosed with a rheumatic illness, I'd strongly recommend he try the AP

as it has been shown to be particularly effective for people who have

only recently contracted the illness. It is important for both of you

to become more educated about both his illness and the various

treatments and towards that I end, I strongly recommend you read the

book The New Arthritis Breakthrough, which very clearly explains the

theory behind the AP, as well as providing a number of case histories

that illustrate its effectiveness. I'd also recommend you check out

this group's site at www.rheumatic.org and read everything on it,

particularly the FAQ, Scientific Studies and Physicians' Protocols

sections. Many of us have found a reluctance among rheumatologists to

try this treatment approach and have been able to convince our doctors

to try it by becoming educated ourselves and putting up sound,

well-reasoned arguments for why we want to follow this treatment. If

you require the name of a doctor in your area who is willing to

prescribe the AP, the group can help with that. So, go do some reading,

ask any questions you have and you'll find this group is a wealth of

information for almost any question you might have. I particularly feel

your partner might benefit from taking the AP as his immune system has

not been compromised by years of traditional RA drugs which can slow

some patients' progress with this treatment.

As for a genetic link, there is some evidence that rheumatic illnesses,

or the predisposition towards them, can run in families but just because

a parent has it, doesn't necessarily mean the kids will get it. So,

there's no easy answers there, just something you'll have to decide for

yourselves.

So, do a little reading and start asking your questions. And tell your

partner if he needs to whine to someone, we're all here and we do great

with whining.

Hugs,

a Peden

Donna wrote:

>

> Hi!

>

> I've been lurking for a few days and figured it was time for me to

> come out of the lurker's closet.

>

> My name is Donna. My partner was recently disgnosed with

> spondylitis,

> although they haven't committed to which " flavor " of spondylitis yet...

>

[Guest guest]

Hi Donna, welcome :-)

I am sorry to hear of your husband 's AS. I also have AS and I know just

how unpleasant it can be not to mention painful :-# Big Ouch!!!!! First

off, depression for me was a great part of the AS I think it is because the

mycroplasmas muddle the mind besides eat the body. It is kind of like the pug

that Paralyzes its prey then eats it. If you are depressed and confused you

do not have a lot of energy to concentrate of being happy.

As far as the Genetic thing goes the odds are this 50% of your children

will be at risk for carrying the gene. Of the child which gets the gene I

think the odds are about 1 in 10,000 they will develop the disease. The rest

are carriers. The gene seems to pass down mostly but not always to the same

sex child. So you sons may have it not your daughters. I would look at his

Ma an Pa , cousins, Uncles Aunts, siblings, etc., to see how many of them

have it. If they are anything like my family it will be a very low number. so

I would not put off having kids because of the chance of getting this. I have

it and I am very happy to be alive :-)

I went on the antibiotics about 4 years ago after a 6 month treatment

with Azulfuldine the Azulfuldine helped a lot, however I believe it is the

antibiotics which gave me back my life. I have gone from being totally

disabled to being a normal person again. I continue to take 100 mg

Doxycycline once a day. If the hubby takes the antibiotics he will fall into

remission in about 6 months more or less. the pain will mostly go away, and

life will be good again. Best of luck to him and to you :-) Now go have a

baby LOL.

Love,

[Guest guest]

I have lupus. My cousin has RA , another cousin has lupus and my grandmother

had RA.The rheumatic diseases skipped a generation in my family.My parents

didn't have any rheumatic illnesses and neither have any of my siblings.Hope

this helps.

Joanie

[Guest guest]

Donna

Hi I also have AS and a few others to go along with it. I think everyone

responds to having a illness like this in different ways. I think it is

great that you are there to help support him. This is a great place to come

for support too.

welcome and blessings,

Sherry

Hi!

> >

> > I've been lurking for a few days and figured it was time for me to

> > come out of the lurker's closet.

> >

> > My name is Donna. My partner was recently disgnosed with

> > spondylitis,

> > although they haven't committed to which " flavor " of spondylitis yet...

[Guest guest]

Hi Donna,

> And then there's one very sensitive issue on which I'd like some

> input

> - The genetic nature of this thing. We were *just* starting to plan

> for children. How likely is it that our children will get this

> disorder? Anyone have any info, or know of info, on this issue?

I've got AS too. They say the chances of passing it on are 15% or

thereabouts (I have read). However, I have it, my only sister has it (I have

no brothers), my mother has it, and two of her four siskin (one brother and

her only sister) also have it or a related condition. So the 15% does not

apply in our family; maybe we are just unlucky.

Regards,

[Guest guest]

You're right, but thank God there are parents who are willing to try

unconventional methods even after they are told " it doesn't work "

" it's a quack diet " . If I had been listening to those people my DS

would be in worse straights than he is now. You are a terrific Mom!

I'm new see the post above. I'm hoping also, but the journey demands

that we trust and pray we will not be taken advantage of. I hope you

find the right answer your DS deserves it!

[Guest guest]

Oh do i know what your talking about about not getting your hopes up. My

hopes were up and i got pretty depressed when my son had a temper tantrum

this afternoon. First one I saw since the enzymes. Rivky

[ ] Intro

> Hi Im Patti and Im gonna try enzymes with my 11 year old HFA son. I don't

> want to get my hopes up so Im just gonna think of it as tossing more money

> out the window as I did on so many other things that were supposed to

help. I

> do this to guard my heart. I want to help him so bad! I want him to have

even

> one friend! I'm really gonna give it a good try and stick it out for the 3

> months and see if it works. I'll do it over the summer so school isn't

> effected. I read some of the files and it just sounds like it really could

> help! Should I give him anything along with the enzymes? Vitamins or

> anything?

> And I want to go on the record saying, Parents of Children with Autism

have

> to learn way more than most people! This is really hard work! Very worth

it

> but thank God I like reading! Hope to learn a lot here!

>

> Well Wishes, Patti*

>

>

>

>

[Guest guest]

Welcome Lynne! Hope you find some answers here. My son just turned 4

and although he is now talking more he is usually hard to understand

to outsiders. Some of his apraxic issues are, deleting final

consonants after certain letters, like hats he may leave off the s

but says it in house, can say daddy but days gog for dog. The SLP

said even some kids w/o apraxia do this because the d is a front

sound and the g is a back sound.

My guess is you are either in the school system or getting ready,

please feel free to write with your questions regarding this process.

Some have experienced horrors, but there are many that schools are

willing to work with us.

Mom to who will be 4 tomorrow and 28 months

--- In @y..., " bluesky55us " <bluesky55us@y...>

wrote:

> My name is Lynne, and my 3yo son has a lot of trouble with his

speech.

> From everything I have read, apraxia seems to be the closest

match,

> although he has improved over the last two years (still significant

> problems though).

>

> I'm hoping to learn more from being on the list - both about

apraxia

> and if it matches my son's symptoms, and also what sort of things

to

> do.

>

> Lynne

[Guest guest]

Dear Lynne,

You will learn everything - good and bad- on this

group. But everyone here is extremely helpful and

it's a good place to vent.

Good Luck,

Kim

--- bluesky55us <bluesky55us@...> wrote:

> My name is Lynne, and my 3yo son has a lot of

> trouble with his speech.

> From everything I have read, apraxia seems to be

> the closest match,

> although he has improved over the last two years

> (still significant

> problems though).

>

> I'm hoping to learn more from being on the list -

> both about apraxia

> and if it matches my son's symptoms, and also what

> sort of things to

> do.

>

> Lynne

>

>

>

>

[Guest guest]

Robin-

Hi, I'm new to the group too. Thanks for sharing your story. I'm also an

SLP, and my daughter (20 months) I suspect may have apraxia. I'm glad you

mentioned your frustrations with your therapists. I feel very strongly about

SLP's and their practice in the EI programs and preschool programs within the

schools. I'm sorry you've had such a negative experience, and I wish that

your 1st therapist was not even in our field!! You are doing the right

thing- being your own advocate for your child. SLP's 'have got to understand

that when they aren't sure about their therapy approach OR if they aren't

sure about a diagnosis (ie. verbal/oral apraxia) they need to refer out-

help that parent find help! Unfortunately, not every SLP knows alot about

this " enigma " called apraxia. HOwever, there are some AWESOME speech

pathologist out there who know their stuff!! $200/hour seems kinda high,

even for private therapy, however, if your getting good results- it's

probably worth it. Most insurance coverage has a cap anyway of therapy

services, so they probably aren't getting paid over what is reasonable and

customary from their insurance payees.

When looking for a new SLP in Austin- I would try and find someone with

specific oral-motor background, possibly NDT certified (neurodevelopment

treatment). Someone with good knowledge of Sensory Integration Disorder,

etc. Good Luck. Enjoy Austin- Its an awesome city!

Jana

[Guest guest]

I wonder if a SLP needs updated training or re-certification or some sort in

this field.

I have had bad experience with SLP. One is from Early Intervension. The SLP is a

very nice girl

who seems to be just graduated from school. At the time, my son was 2.8 and can

only says

mama,baba, but didn't really want to say it. At the second week of therapy, she

carefully

mentioned " PDD " to me. This word is so heavy and it weighs on us up until 2

months ago. She knew

Dylan could not blow bubbles or anything but never worked on any oral motor

training or even

tested his oral motor skill. When Dylan started preschool at 3, the SLP in

school was still doing

the same thing, therefore, no improvement at all.

I later found out both SLP did not know much about apraxia. If apraxia is so

wide spread, why a

lot of SLP don't even know it? We wasted almost a year of time before he got the

dx of apraxia and

is just beginning to receive treatment. If the SLP at least refer my child to

or conference with

other SLP, we can at least find out and treat the problem earlier. I still feel

aweful that I did

not find this group and CHERAB's website earlier. I trusted the professionals

and believed they

will always do the right thing.

Agnes (mom of Dylan 3.6 apraxic & SID)

--- wjanapaul@... wrote:

> Robin-

>

> Hi, I'm new to the group too. Thanks for sharing your story. I'm also an

> SLP, and my daughter (20 months) I suspect may have apraxia. I'm glad you

> mentioned your frustrations with your therapists. I feel very strongly about

> SLP's and their practice in the EI programs and preschool programs within the

> schools. I'm sorry you've had such a negative experience, and I wish that

> your 1st therapist was not even in our field!! You are doing the right

> thing- being your own advocate for your child. SLP's 'have got to understand

> that when they aren't sure about their therapy approach OR if they aren't

> sure about a diagnosis (ie. verbal/oral apraxia) they need to refer out-

> help that parent find help! Unfortunately, not every SLP knows alot about

> this " enigma " called apraxia. HOwever, there are some AWESOME speech

> pathologist out there who know their stuff!! $200/hour seems kinda high,

> even for private therapy, however, if your getting good results- it's

> probably worth it. Most insurance coverage has a cap anyway of therapy

> services, so they probably aren't getting paid over what is reasonable and

> customary from their insurance payees.

>

> When looking for a new SLP in Austin- I would try and find someone with

> specific oral-motor background, possibly NDT certified (neurodevelopment

> treatment). Someone with good knowledge of Sensory Integration Disorder,

> etc. Good Luck. Enjoy Austin- Its an awesome city!

>

> Jana

[Guest guest]

As a SLP myself, I can tell you that when I went to school (graduated 1994),

developmental apraxia of speech was mentioned, but that was pretty much it. We

were led to believe that it was a disorder that really did not occur very often

and treatment for apraxia was just really not addressed. The majority of my

required courses focused on Language disorders, articulation disorders

(difficulty saying a few sounds), and phonological disorders (larger group of

sound errors). But, apraxia (which is impaired motor planning) was just really

not addressed. The coursework required for SLPs at that time was already so

full. An SLP is able to choose from various job opportunities when we graduate

- school setting, rehab settings (including nursing homes, hospitals), Traumatic

Brain Injury clinics, pediatric clinics,etc. - there are so many areas in which

a therapist can choose to specialize - language, stuttering, voice disorders,

velopharyngeal insufficiency, articulation/phonology, dysphagia (swallowing

disorders), traumatic brain injury, voice therapy for professional

singers-actors-professional speakers, speech for those who want to change their

dialectal speech patterns, and of course apraxia - wow, I've probably even left

some out. As mentioned, our required coursework is already very full, then

there are shorter courses, electives - which may or may not be what you're

interested in,there may not be a course offered at that time in your interest.

Many therapist do choose to " specialize " , but a large majority do not. So, when

looking for a SLP, it is important to find out how long they've worked with

children, what kind of continuing education courses they've attended, and their

experience working with childhood apraxia. Our educational foundation is very

similar; however, it is our job experience and continuing education that really

defines (in part) how qualified we are to work with particular populations and

particular disorders. You have a right to ask questions to find these things

out.

Myself, I work in the rehab setting (nursing home) with primarily geriatric

patients. The majority of my caseload consists of patients with dysphagia

(difficulty swallowing). My son is 4 1/2 and diagnosed with SID, suspected

Central Auditory Processing Disorder, and phonological disorder - although now

I'm beginning to suspect if he actually has mild apraxia - as I've been

researching it so much more in the past 2 months. I first came onto this site a

couple of months ago, when I began having increasing concerns about my daughter

(18 months) - she is showing some classic signs of oral and verbal apraxia. I

am going to take her for a formal speech eval to confirm/refute my " diagnosis "

and to get input re: the latest and best treatment strategies so that when I

work with her (as well as my son) at home, I can provide the best intervention

possible. And am I just going to take her to any SLP? Heck no. We all have

the basics, but, we take different career tracks and take different interests

and specialties. Another member of this site was so kind as to provide me with

the name of her therapist (with whom she is very satisfied). I'll be driving 1

1/2 hours for the eval, but my daughter is worth it. The actual therapist to

which I was referred does not have an opening until Jan 31, but I was then

referred to another who reportedly has a lot of experience as well.

Sorry so, long, but just wanted to say " thank you " to all on the site and the

great info which I am finding here. I started both my children on ProEFA two

weeks ago. They are both already showing good improvements.

Sincerely,

Debbie (Kolton 4.9, SID, suspected CAPD, phonological; 1.6 - suspected

oral/verbal apraxia)

Re: [ ] Intro

I wonder if a SLP needs updated training or re-certification or some sort in

this field.

I have had bad experience with SLP. One is from Early Intervension. The SLP is a

very nice girl

who seems to be just graduated from school. At the time, my son was 2.8 and can

only says

mama,baba, but didn't really want to say it. At the second week of therapy, she

carefully

mentioned " PDD " to me. This word is so heavy and it weighs on us up until 2

months ago. She knew

Dylan could not blow bubbles or anything but never worked on any oral motor

training or even

tested his oral motor skill. When Dylan started preschool at 3, the SLP in

school was still doing

the same thing, therefore, no improvement at all.

I later found out both SLP did not know much about apraxia. If apraxia is so

wide spread, why a

lot of SLP don't even know it? We wasted almost a year of time before he got the

dx of apraxia and

is just beginning to receive treatment. If the SLP at least refer my child to

or conference with

other SLP, we can at least find out and treat the problem earlier. I still feel

aweful that I did

not find this group and CHERAB's website earlier. I trusted the professionals

and believed they

will always do the right thing.

Agnes (mom of Dylan 3.6 apraxic & SID)

--- wjanapaul@... wrote:

> Robin-

>

> Hi, I'm new to the group too. Thanks for sharing your story. I'm also an

> SLP, and my daughter (20 months) I suspect may have apraxia. I'm glad you

> mentioned your frustrations with your therapists. I feel very strongly about

> SLP's and their practice in the EI programs and preschool programs within the

> schools. I'm sorry you've had such a negative experience, and I wish that

> your 1st therapist was not even in our field!! You are doing the right

> thing- being your own advocate for your child. SLP's 'have got to understand

> that when they aren't sure about their therapy approach OR if they aren't

> sure about a diagnosis (ie. verbal/oral apraxia) they need to refer out-

> help that parent find help! Unfortunately, not every SLP knows alot about

> this " enigma " called apraxia. HOwever, there are some AWESOME speech

> pathologist out there who know their stuff!! $200/hour seems kinda high,

> even for private therapy, however, if your getting good results- it's

> probably worth it. Most insurance coverage has a cap anyway of therapy

> services, so they probably aren't getting paid over what is reasonable and

> customary from their insurance payees.

>

> When looking for a new SLP in Austin- I would try and find someone with

> specific oral-motor background, possibly NDT certified (neurodevelopment

> treatment). Someone with good knowledge of Sensory Integration Disorder,

> etc. Good Luck. Enjoy Austin- Its an awesome city!

>

> Jana

[Guest guest]

> Hello to all, I am a newby to your group.

" HI Cherie :-) A huge Welcome to the group! Since there are now over 700 of

us, we oftentimes post replies directly to the individual, and not the whole

group (like I am doing here)....but only to keep our number of messages

manageable. The great thing about having 700+ members is that there is always

someone available to answer questions and share experiences. "

My rheumatic story/symptoms started about so long ago. I am still not sure

what all I have.Although I now have a concrete dx of psoriatic arthritis, also

have autoimmune hepatitis and tentative dx of lupus. The bottom line for me is,

my immune system ain't what it oughta be. I stumbled onto your web site and

decided this is something I'd like to try. I have had it " up to here " with

prednisone, mtx, and the like. I've had several people with AI diseases tell me

that if you stay on pred, more than 6 months, your AI system is totally ruined.

If that is the case I guess mine was gone about 27 years ago. I have terrible

side effects from them as I think everyone does, and I've made up my mind that I

am going on this therapy.

> The web site says to become very familiar with the physician's protocol

BEFORE you approach your doctor. That thing is so long, did you all really do

that?

" I think the two major reasons to become so familiar with the protocol are

because some doctors will try to talk you out of it, due to their incorrect

assumptions or information. If you are familiar with the protocol, you stand a

better chance of debating the merits of the antibiotic protocol (called AP here

in the group) The other reason.....as you progress on the AP, you will

undoubtedly have questions and need to refer back to the protocol....familiarity

makes it a lot easier :-)

I'm not a big one for patience,

" I understand your impatience.....but please give this treatment all the

patience you can muster. If you are patient, and improvement to come in small

steps initially....as in months....you will temper your expectations to a

realistic level. Once you start to see improvement, you will realize that this

really works. "

....especially after this long of fighting with ignorant drs. Should I just print

the whole thing?

" You might want to print the whole thing, and then high-light the parts that you

especially want to remember. I also read and re-read Henry Scammell's book, The

New Arthritis Breakthrough many times. "

Looking for tips here..... Have no idea where my labs are at the moment, but

they've been up and down over the years, just as I read a lot of yours are. The

arthritis comes with all of my dxs, so I don't really care what I have, I have

to put up with RA.

" Many of us have a combination of diseases. Not to worry, though. Dr.

McPherson Brown, the originator of this treatment, tended to lump all of the

rheumatic diseases together...and successfully treated them with the AP. "

> I am a 48 year old grandmother " I'm 48 years old, too :-) who finally had to

quit work, so the frustration level just about tripled.

> I can see there's a lot to learn. Every time I get a new dx, its the same

thing, I'm so tired of it all.

> Do all of you get depressed?

" For many/most of us, depression is definitely a component to these diseases. I

can honestly say that mine is gone! My doc prescribed an antidepressant, and I

took it for probably a year and a half. Eventually, the AP set everything back

in " working order " and the depression, along with so many other

symptoms...fatigue, aches, pains, stiffness, rash, etc. became a thing of the

past. "

The last doc I had told me that depression was not part of this disease, and he

did not prescribe pain meds for any of his patients. He was a rheumy. Needless

to say, I found another one, but first appt isn't until Feb 6. then its start

all over again, transfer records, blood and urine tests, all the forms, blah

blah blah. Ready to scream.

" We have a rather substantive list of doctors who have agreed to have their

names listed here in this group. You might want to check and see if there is

one in your area. Some of us travel a great distance to see a supportive

AP-type doc...in my case, I see Dr. Franco once a year, while my regular

internist takes care of any in-between visits. "

> So, heres the questions, 1. should i print out the physicians protocol? " Yes "

2. Does anyone take the " poison drugs " at the same time as the " protocol " drugs?

" Some people who are already on the " poison drugs " such as prednisone and/or

methotrexate are started on the AP and gradually weaned off of the others. " 3.

Do you have problems with depression, or is it just me? " Many of us used to/no,

it's not just you :-) 4. Does anyone have multiple problems with drs in

general? " Yes...I'm still training mine :-) 5. What questions do you ask " up

front " in order to find an agreeable dr? " I asked my local internist if he

would use this treatment for others. He told me, only if they refuse the other

meds. So, the key word is to refuse the traditional meds and let them know that

this is what you would like to do and that you will either partner with them, or

find someone else. (and then read our list of supportive docs :-)

> When i made my next appt, I asked the receptionist if she thought he'd be open

to this therapy, she said she only knew he used all the regulars. " Sometimes,

the receptionists don't know. " So in all likelihood, this will be just another

waste of time. I'd really appreciate any help. thanx, cherie.

Good luck, Cherie :-) Stay with us, and keep us up to date. There are many

here who have experiences similar to yours. ~Connie

>

[Guest guest]

Hi Cherie! Geoff here again.

You wrote:

" Do all of you get depressed? "

Yes, depression is a normal adjunct to the rheumatic diseases. There are a

variety of reasons including fatigue, long-term pain, and especially the

" mainline " Rx drugs which carry a variety of psychological complications.

The depression waxes and wanes, but it seems best controlled and lessened

with adequate sleep (not drug induced,) adequate clean water (8-12 16oz

glasses daily,) hope, and help.

" The last doc I had told me that depression was not part

of this disease, and he did not prescribe pain meds for any

of his patients. "

There is no lack of idiots in this world, and we all get turns to fill in

when then numbers seem to dwindle.

" He was a rheumy. Needless to say, I found another one...

When i made my next appt, I asked the receptionist if she

thought he'd be open to this therapy, she said she only knew

he used all the regulars. So in all likelihood, this will be just

another waste of time. I'd really appreciate any help. "

Good move, but short a bit of pre-appointment homework? Before you invest

your time interviewing this doctor while you pay him, perhaps it would be

good to take a few more " applications. " One member of this liust just

within the last couple of weeks said she and some help faxed a very short

(say 1-2 paragraphs) brief of the protocol to physicians in her area and

evaluated the responses. Upon finding (a) physician(s) willing to follow

the protocol, she then had reasonable grounds to proceed with confidence.

You can do this too. It can save you money and time, while coincidentally

placing you in the driver's seat... a place that can restore your confidence

and give you hope.

" 1. should i print out the physicians protocol? "

Only if you need it for your own convenience or that of your physician.

Mine I e-mailed a hyperlink and we both refer to it on the Web as a matter

of ease.

" 2. Does anyone take the " poison drugs " at the same

time as the " protocol " drugs? "

Some do, but there are alternatives. For instance, many get relief from

symptoms such as pain, swelling, inflammation, fatigue and insomnia from the

herbal RheuMax available at www.healingyou.org. Others find varying degrees

of success with a variety of other means including compresses, etc. The

bottom line is that amongst this group is a gathered competence which the

physicians told me personally far outweighs that available elsewhere. Make

use of it.

" 3. Do you have problems with depression, or is it just me? "

Yes, most of us do or have and no, it's not just you. BTW, if you are

interested there is also a prayer group here (www.healingyou.org/poppies/)

" 4. Does anyone have multiple problems with drs in general? "

Just about everybody.

" 5. What questions do you ask " up front " in order to find

an agreeable dr? "

It's more a question of, " Is this person willing to take the time to

question me in detail, listen to my answers, explain his opinions and answer

my questions without being condescending, demeaning, hurtful or rude in such

a way that I can understand him? Does he give me hope or does he make me

feel or even say outright that my condition is incurable and the best that

can be hoped for is 'management' and 'control?' Does this doctor see me as

a 'whole person' with hopes and dreams and fears and needs, or am I simply a

collection of replaceable parts whose status is attained via laboratory

tests and whose system can be fine-tuned with the a god bar tender mixing up

just the right cocktail of Rx medicines? "

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing damage; 100% volunteer staffed.

[Guest guest]

Dear Grandmother!!!

As a grandma myself I had to chuckle at your letter. You sounded

just like I did two years ago. Fortunately for me my rheummy point blank

refused Minocin and in desperation I drove three hours each way to a doctor

Marge had told me about. I was so angry that I was determined to find a doc

who was familiar with this protocol and it was the best thing that could have

happened. I am now in complete remission.

Going it alone with a doc who is skeptical is a difficult proposition.

One has to have a particularly determined outlook to surmount all the doubts

a doc can throw at you. It has been my experience that if you simply cannot

find a doc from someone on this board that knows what he is doing, your best

bet is a family practitioner or General praactitioner. They are usually more

open to suggestion.

Depression is definitely a problem for anyone with chronic pain.

Anyone who suggests otherwise certainly has not read the mainstream thinking

on this. Lets face it..... 50% of the doctors are in the bottom half of

their profession, and obviously your old rheummy fit into that category. I

had to pay for every penny of my treatment myself................it was

worth every penny. I have gone from almost having to retire and sell my two

story house, to working 60 hour weeks and riding horses on the weekends.

One thing you cannot put a price on is health...without it life is miserable.

Find a doc who will guide you through this and get well. Best wishes for a

complete remission. Martha

[Guest guest]

Welcome to the group. You will find lots of great suggestions, support and

encouragement! Our son with AS is 15 and was not dx till the age of

11...most of our difficulties are also educationally based...i.e. bullying in

school, social unawareness, etc. I believe that there are others who are

also UK based...we are in the states---across the pond. Looking forward to

getting to know you and your family better...feel free to jump in to the

conversation!

Blessings,

Gail

[Guest guest]

Hi Thanks for the lovely response Dottie! And I agree Andy is wonderful

scientist and humanist with just the little interactions I have had so far. I

have

monitored my hair about every 3-6 months for about 6 yrs. my Hg levels

fluctuate but have dropped from very high to low, but now are emerging the other

metals and the Hg stays about the same the last couple of years. I currently

take

all that you have mentioned supplementwise and MORE! I have felt better since

I increased my Zinc to about 85 mg per day but again I have used OptiZinc and

wonder if I should change to Zinc citrate or picolinate. I have not done great

with picolinates in the past however. I don't like to take high Zinc for too

long but my copper was high on last hair analysis so my Zn/Cu ratio was quite

low...very dangerous! I use Trace Elements for my hair but have lab priveldges

with DD as well, and MeteMetrix with my work. So maybe I'll try those down

the road so we can all be standardized. I am gonna test my Plasma Cysteine and

Sulfate next however to rule out this problem.

I am confused as to whether or not MMR did have thimerosol back in 1985 when

I was injected or not? Even if it was not Hg as you say, I may have had

anotehr dose of formaldehyde. As well the molecular mimicry of measles and

Multiple

Sclerosis has been observed. I think basically that vaccine autoimmunized me

back then. The truth is I have been mostly well the last decade or so with only

flareups and set backs occasionally MS wise and with my chemical

sensitivities. But the last 8 months have been rough. I suspect i have put the

whole heavy

,etal issue on the back burner too long and it is now in my face to work

with---and I am grateful to find this group. I hope it is appropriate to discuss

Hg with regard to MCS/MS and other syndromes given I see this site is chiefly

orietnted toward Autism. Many thanks.

Jerry

[Guest guest]

I mentioned a possible change because someone earlier today had expressed

concern over the presence of methionine in OptoZinc. However I don't think

this is a an issue (see what Andy says). I like OptiZinc cause it has

secondary benefit of improving testosterome levels if they are low.

[Guest guest]

Right. It was likely the virus that made me ill through molecular

mimicry/autoimmune mechanism.

[Guest guest]

is there something wrong with the optizinc you are taking right now? why need to

change zinc supplement?

Jerdeutsch@... wrote:

Hi Thanks for the lovely response Dottie! And I agree Andy is wonderful

scientist and humanist with just the little interactions I have had so far. I

have

monitored my hair about every 3-6 months for about 6 yrs. my Hg levels

fluctuate but have dropped from very high to low, but now are emerging the other

metals and the Hg stays about the same the last couple of years. I currently

take

all that you have mentioned supplementwise and MORE! I have felt better since

I increased my Zinc to about 85 mg per day but again I have used OptiZinc and

wonder if I should change to Zinc citrate or picolinate. I have not done great

with picolinates in the past however. I don't like to take high Zinc for too

long but my copper was high on last hair analysis so my Zn/Cu ratio was quite

low...very dangerous! I use Trace Elements for my hair but have lab priveldges

with DD as well, and MeteMetrix with my work. So maybe I'll try those down

the road so we can all be standardized. I am gonna test my Plasma Cysteine and

Sulfate next however to rule out this problem.

I am confused as to whether or not MMR did have thimerosol back in 1985 when

I was injected or not? Even if it was not Hg as you say, I may have had

anotehr dose of formaldehyde. As well the molecular mimicry of measles and

Multiple

Sclerosis has been observed. I think basically that vaccine autoimmunized me

back then. The truth is I have been mostly well the last decade or so with only

flareups and set backs occasionally MS wise and with my chemical

sensitivities. But the last 8 months have been rough. I suspect i have put the

whole heavy

,etal issue on the back burner too long and it is now in my face to work

with---and I am grateful to find this group. I hope it is appropriate to discuss

Hg with regard to MCS/MS and other syndromes given I see this site is chiefly

orietnted toward Autism. Many thanks.

Jerry

[Guest guest]

Very appropriate to discuss mcs here. Dont worry about

it .

--- young lee <youngjaem@...> wrote:

> is there something wrong with the optizinc you are

> taking right now? why need to change zinc

> supplement?You may be heavy metal toxed not just hg

toxed. I personally believe that once hg takes a hold

of you the other metals can accumulate and stick to

you like glue.If your copper is high you need more

zincShare your hair test on list and ask andy to

help[the poor guy i refere everone to him/but hes so

intelligent and willing to share]

>

> Jerdeutsch@... wrote:

> Hi Thanks for the lovely response Dottie! And I

> agree Andy is wonderful

> scientist and humanist with just the little

> interactions I have had so far. I have

> monitored my hair about every 3-6 months for about 6

> yrs. my Hg levels

> fluctuate but have dropped from very high to low,

> but now are emerging the other

> metals and the Hg stays about the same the last

> couple of years. I currently take

> all that you have mentioned supplementwise and MORE!

> I have felt better since

> I increased my Zinc to about 85 mg per day but again

> I have used OptiZinc and

> wonder if I should change to Zinc citrate or

> picolinate. I have not done great

> with picolinates in the past however. I don't like

> to take high Zinc for too

> long but my copper was high on last hair analysis so

> my Zn/Cu ratio was quite

> low...very dangerous! I use Trace Elements for my

> hair but have lab priveldges

> with DD as well, and MeteMetrix with my work. So

> maybe I'll try those down

> the road so we can all be standardized. I am gonna

> test my Plasma Cysteine and

> Sulfate next however to rule out this problem.

>

> I am confused as to whether or not MMR did have

> thimerosol back in 1985 when

> I was injected or not? Even if it was not Hg as you

> say, I may have had

> anotehr dose of formaldehyde. As well the molecular

> mimicry of measles and Multiple

> Sclerosis has been observed. I think basically that

> vaccine autoimmunized me

> back then. The truth is I have been mostly well the

> last decade or so with only

> flareups and set backs occasionally MS wise and with

> my chemical

> sensitivities. But the last 8 months have been

> rough. I suspect i have put the whole heavy

> ,etal issue on the back burner too long and it is

> now in my face to work

> with---and I am grateful to find this group. I hope

> it is appropriate to discuss

> Hg with regard to MCS/MS and other syndromes given I

> see this site is chiefly

> orietnted toward Autism. Many thanks.

>

> Jerry

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

The MMR could NEVER have contained Thimerosal. The mercury would have killed

the live viruses.

Re: [ ] Intro

> is there something wrong with the optizinc you are taking right now? why

need to change zinc supplement?

>

> Jerdeutsch@... wrote:

> Hi Thanks for the lovely response Dottie! And I agree Andy is wonderful

> scientist and humanist with just the little interactions I have had so

far. I have

> monitored my hair about every 3-6 months for about 6 yrs. my Hg levels

> fluctuate but have dropped from very high to low, but now are emerging the

other

> metals and the Hg stays about the same the last couple of years. I

currently take

> all that you have mentioned supplementwise and MORE! I have felt better

since

> I increased my Zinc to about 85 mg per day but again I have used OptiZinc

and

> wonder if I should change to Zinc citrate or picolinate. I have not done

great

> with picolinates in the past however. I don't like to take high Zinc for

too

> long but my copper was high on last hair analysis so my Zn/Cu ratio was

quite

> low...very dangerous! I use Trace Elements for my hair but have lab

priveldges

> with DD as well, and MeteMetrix with my work. So maybe I'll try those down

> the road so we can all be standardized. I am gonna test my Plasma Cysteine

and

> Sulfate next however to rule out this problem.

>

> I am confused as to whether or not MMR did have thimerosol back in 1985

when

> I was injected or not? Even if it was not Hg as you say, I may have had

> anotehr dose of formaldehyde. As well the molecular mimicry of measles and

Multiple

> Sclerosis has been observed. I think basically that vaccine autoimmunized

me

> back then. The truth is I have been mostly well the last decade or so with

only

> flareups and set backs occasionally MS wise and with my chemical

> sensitivities. But the last 8 months have been rough. I suspect i have put

the whole heavy

> ,etal issue on the back burner too long and it is now in my face to work

> with---and I am grateful to find this group. I hope it is appropriate to

discuss

> Hg with regard to MCS/MS and other syndromes given I see this site is

chiefly

> orietnted toward Autism. Many thanks.

>

> Jerry

>

>

>

[Guest guest]

mcs=Multiple Chemical Sensitivities

[Guest guest]

what are mcs?

robbie v <robbiev911@...> wrote:Very appropriate to discuss mcs here. Dont

worry about

it .

--- young lee <youngjaem@...> wrote:

> is there something wrong with the optizinc you are

> taking right now? why need to change zinc

> supplement?You may be heavy metal toxed not just hg

toxed. I personally believe that once hg takes a hold

of you the other metals can accumulate and stick to

you like glue.If your copper is high you need more

zincShare your hair test on list and ask andy to

help[the poor guy i refere everone to him/but hes so

intelligent and willing to share]

>

> Jerdeutsch@... wrote:

> Hi Thanks for the lovely response Dottie! And I

> agree Andy is wonderful

> scientist and humanist with just the little

> interactions I have had so far. I have

> monitored my hair about every 3-6 months for about 6

> yrs. my Hg levels

> fluctuate but have dropped from very high to low,

> but now are emerging the other

> metals and the Hg stays about the same the last

> couple of years. I currently take

> all that you have mentioned supplementwise and MORE!

> I have felt better since

> I increased my Zinc to about 85 mg per day but again

> I have used OptiZinc and

> wonder if I should change to Zinc citrate or

> picolinate. I have not done great

> with picolinates in the past however. I don't like

> to take high Zinc for too

> long but my copper was high on last hair analysis so

> my Zn/Cu ratio was quite

> low...very dangerous! I use Trace Elements for my

> hair but have lab priveldges

> with DD as well, and MeteMetrix with my work. So

> maybe I'll try those down

> the road so we can all be standardized. I am gonna

> test my Plasma Cysteine and

> Sulfate next however to rule out this problem.

>

> I am confused as to whether or not MMR did have

> thimerosol back in 1985 when

> I was injected or not? Even if it was not Hg as you

> say, I may have had

> anotehr dose of formaldehyde. As well the molecular

> mimicry of measles and Multiple

> Sclerosis has been observed. I think basically that

> vaccine autoimmunized me

> back then. The truth is I have been mostly well the

> last decade or so with only

> flareups and set backs occasionally MS wise and with

> my chemical

> sensitivities. But the last 8 months have been

> rough. I suspect i have put the whole heavy

> ,etal issue on the back burner too long and it is

> now in my face to work

> with---and I am grateful to find this group. I hope

> it is appropriate to discuss

> Hg with regard to MCS/MS and other syndromes given I

> see this site is chiefly

> orietnted toward Autism. Many thanks.

>

> Jerry

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

> what are mcs?

It stands for " Multiple Chemical Sensitivity " .

It is a condition that some mercury toxic people have.

It is usually very hard to live with logistically, from what I

have read. It involves having bad reactions to things like lawn

sprays or dyes or various sorts of chemicals.

Moria