Update

[Guest guest]

Hi , Just a thought --- How about IM's?!! You don't need veins

vor that.

Cooky <caring hug>

wrote:

>

> From: " " <flight@...>

>

> Hi gang,

>

> I have missed all of the mail, I am one of the guilty ones who get lonely

> without my mail. Thank God we had a mini list going. A BIG thank you to

> Steve, he works so hard to keep us going. It is hard to find such dedication

> these days, I think he should win an award of some sort.

>

> Well, my update is I have found more things I am allergy to(so what else is

> new!!!) I definitely am an alien.LOL A few which still affect my respiratory

> system. I am going back to Ottawa on Friday for more tests, this is the

> tricky part now, which one will make me land on the floor. I know what geoff

> is saying right now(the woman is nuts!!!) Yup, I guess so....

>

> Now since my eating habits have declined to a very small category of foods,

> my stomach has taken its toll and I now have an ulcer. The doc at the

> hospital said no Minocin, no NSAIDS, lots of Maalox and prednisone. This is

> definitely not what I am going to follow, the part of prednisone and lots of

> Maalox, that doesn,t go too well with someone who has toxic levels of

> aluminum!

>

> Another new thing is that my skin is starting to harden, it would be normal

> if all those places were the places I have my injections but it isn't. I am

> not too happy about this. I can already hear some of you scleroderma people

> saying this sounds familiar, but I already have enough diseases, I don't

> want anymore!!!

>

> Then the last thing is that I am unable to get my IV's in completely, my

> veins are collapsing, infiltrating, the works. I have done eveyrthing

> possible to get out of that mess. Tommorrow, I am supposed to get an expert

> for problem veins, hopefully it won't be like today, 6 jabs. If she can't

> get this done, it looks like I will have to get a permanent catheter.

>

> So, hope all of you are doing better than I am right now. Tons of hugs for

> all of you....

>

>

>

> ------------------------------------------------------------------------

> To unsubscribe from this mailing list, or to change your subscription

> to digest, go to the ONElist web site, at and

> select the User Center link from the menu bar on the left.

[Guest guest]

Dear Geoff,

Do you think if my husband went into remission I could get him to

wash our cars, weed, and maby even mow the lawn? That would be great as he

never has before.

rheumatic Update

>From: Geoff Crenshaw <geoff@...>

>

>Hi Folks! Geoff Crenshaw here.

>

>Thought an update on condition might be appropo...

>

>The weight loss problem has resolved - am now at 195-198 (6'4M) and

>stable regardless of outside influences. This has been and is a major

>improvement. Energy levels remain constant at around 8 out of 10 with

>morning surges into 9-10 area. That is a very odd thing considering the

>classic RA problems usually present in the AM. For me now, AM's are

>great - go out and wash the cars, weed, etc. Wrist, hand and finger

>involvements have all improved to a point that I am able (occassionally)

>to carry 40# bags of rock salt (potassium chloride). Lifting them with

>my shot wrists was a major problem - now I can lift them and get them up

>to my arm where I can carry them easily. This is a big improvement too

>as you can imagine. (We use the salt in a water softener.) Mental state

>is greatly improved - general attitude and outlook are positive, brain

>fog lessening. Still able to walk barefooted - now so common I hope I am

>never reminded of how badly it hurt before. Good ROM in shoulders,

>knees, hips. Still doing 4 RA SPES daily. Rheumy also started on a

>diuretic w/Potassium Chloride to try and reduce edema surrounding

>Baker's Cysts which have yet to resolve. May be left with no choice on

>those except cortisone injections. No NSAIDs or other Rx meds.

>Interesting note (next post) on dental work...

>

>--

>Regards,

>

>Geoff Crenshaw, ACC ----------------------

>Managing Partner ** No Disclaimers **

>Captain Cook's Cruise Center ----------------------

>----------------------------------------------------------------------

>Over 3,000 daily cruise & tour specials > Top 5% of Web Sites

>http://www.800-800-cruise.com [specials] > Top 100 Travel Sites

>. > Top Web Sites for

>Cruise tips New Zealanders

>http://www.800-800-cruise.com [tips]

>

>USA PH: 800-800-CRUIse PH: 559-636-8413 FAX:559-734-1420

>----------------------------------------------------------------------

>geoff@...

>

> " Faith is not believing in spite of the evidence;

> it is obeying in spite of the consequence. "

>

>------------------------------------------------------------------------

>Have you visited our new web site?

>

>Onelist: Helping to create Internet communities

>

[Guest guest]

I know things can get tough living with a chronic illness. I'm not sure what

you have being rheumatoid arthritis or scleraderma. I have scleraderma and

received a scleraderma newsletter that says it all for me and I wish to share

it with you and everyone else. This one really hit home with me and was very

well written. Everytime I get feeling bad I read this.

Keeping a Positive Attitude

When you feel lousy, have felt lousy for a long time, have a limited number

of activities left that you can participate in, and have a condition that

your near and dear or even doctor doesn't know much about finding and keeping

a positive attitude may seem no more attainable than winning the lottery.

However, having and maintaining a good outlook for yourself and your life may

be absolutely essential in reaching mental and, hopefully, physical health.

Probably all individuals who have had prolonged, severe debilitating symptoms

feel like giving up. " What's the point? " you may have sincerely asked

yourself. It must be acknowledged from the outset that periods of depression

are part of coping with your Illness. Therefore, what we can do is to not get

depressed about being depressed. That would just make getting out of it a

harder and longer process.

Recent books on the subject of death and dying often mention the stages that

a dying person goes through. The first phase is usually denial, followed by

anger and depression. Eventually a stage of acceptance is reached by many and

it is at that point that they no longer fight within themselves. This does

not mean that the terminally ill no longer fight their cancer, for instance,

but rather that they quit punishing themselves mentally for having tumors.

In comparison with most cancer patients, scleroderma has a wide arrange of

hopes to grasp. I must make sure you know that there are many many patients

that do rather well with this disease and only suffer from non life

threatening effects. Not minimizing their pain but in addressing newly

diagnosed patients they need to understand that this disease is far from

being a death sentence once diagnosed. It varies widely from patient to

patient.

People who experience life altering events or conditions also may go through

these same stages of emotions as a terminally ill patient. Although they are

not actually dying, a part of their life may, in a sense, have died. Their

home may have been flattened by a tornado, a friend may have died in an

automobile accident, or they may find themselves with diabetes. Or as in our

case, diagnosed with scleroderma. In all of these cases, a part of the

comfortable past has been radically changed forever. The process of mourning

then usually begins to take over. It is a universal mechanism that we use to

cope with loss.

Having scleroderma is one such life altering condition that can change your

life drastically and maybe permanently. Don't be upset if you too experience

mourning. You have lost a great deal. Your goal, if you choose, is to reach

the last stage of self acceptance. Remember, this does not mean giving up

your medication, support, testing, saunas or any other therapy that you or

your doctor feel are beneficial. It means accepting yourself as you are and

feeling that no matter what, you remain a good and worthwhile human being.

Your value does not diminish one iota because you may now be sick in bed or

you can no longer work full time. Have the same compassion for yourself that

you would have for a hurting child to whom you would naturally feel caring

towards. Are you really less worthy of love than you were before being

diagnosed?

In reality, loving and acceptance are pretty much the same thing. When you

grow in love with your fiance, for example, you grow to be more accepting of

him or her. You also begin to feel that you can be free to just be yourself.

You both no longer have to impress each other. In other words, the

relationship increases in love the more accepting and honest it is. Those of

us who are very ill must seek to love and be honest, and therefore more

accepting of who we are, in order to maximize our relationship with

ourselves.

A positive mental outlook can actually promote your body's healing. During

the last few years doctors and researchers have explored the

interconnectedness of a person's immune system and mental state. As

" non-orthodox " healers have known for thousands of years, the mind can really

help to heal the body. It could be called psychosomatic healing. Dr. Bernie

Siegel, in his books (ie. Love, Medicine, and Miracles) and therapy clinics

has documented such " unscientific " events as malignant

tumors shrinking after patients had practiced positive thinking and self-love

techniques over a period of time. Your scleroderma symptoms may not shrink

away dramatically if you find and keep a positive attitude but the odds are

that it will certainly be better for your physical health than if you had a

negative attitude.

" Why me? " often pops into the heads of people with scleroderma. Pain and

suffering are natural parts of living. It has been said that pain is the

means by which we learn what hurts us so that we can avoid it. Pain and

suffering should be thought of as teachers.

It may be said that having a condition like scleroderma before it is widely

accepted is a special responsibility given to us in order that we should

personally spread the word. Remember, people used to laugh at the

brothers. Today we have the space shuttle. Common people can accomplish

uncommon goals. Consider the fact that scleroderma is rarely known as a

typical reaction that a society has toward unanticipated change or discovery.

This is just the way it is, Sooner or later,

scleroderma will be understood. Your positive attitude and sense of purpose

can help future scleroderma patients have an easier time of it.

When you begin to accept who you are then you might try viewing scleroderma

as a challenge. What can you do to contribute to others by using the

experiences you have gone through? You might begin to write. Write possibly

to your family doctor who told you in so many words that you were crazy

before being officially diagnosed. Explain scleroderma to him briefly and

list a couple of books he might read. Write to a congressman. Write to or for

a newsletter or magazine. Write to companies to ask for them to support

scleroderma research. Write to companies that supports our fight for a cure

and thank them for their

participation. Telephone another scleroderma patient who is sicker than you

are and let them know that you care. So, expect depression, but don't

actively contribute to it.

See yourself as the worthy creation that you are. Seek to use your life

experiences to make things better. Above all, know that finding and keeping a

positive attitude will hasten the physical health that you seek. But even if

your health fails to improve, your better attitude will not allow you you to

miss all of the other aspects of life that are still available to you. Your

illness may actually give you the opportunity to appreciate the caring of a

friend or spouse, or give you the time to contemplate the wonder of the

stars. If you look, there is always a lot more than you realized to be

thankful for.

[Guest guest]

Jani - I'm so sorry that you're having such a difficult

time. I hope those in the group with more experience can

give you some words of wisdom and helpful advice. I'm too

new to have much experience with all this but my heart goes

out to you in this time of diffuculty. Keep in touch

always! We care!!!

jani wrote:

> I've been away for awhile with a virus that won't go away

> and an asthma attack. I have been on Enbrel for 2 months,

> didn't do a thing for me. Now on to Arava. Paxil didn't

> help me for depression so now I'm on Prozac. Still

> following the AP and taking Metho. No improvement for a

> long time. It is so hard to stay focused and to keep a

> positive attitude. I'm still taking morphine and Lodine,

> 3 times a day along with occasional use of vicadin when

> the pain is really bad. I now sleep with a CPAP machine

> for my sleep apnea and use a nebulazier twice a day for

> my asthma along with my 2 kinds of inhalers. I am really

> feeling low about what is happening to me and I don't know

> what will happen next. It is hard for me to believe that

> just a year and a half ago I had I life!!!! Now I have

> medusa and machines to keep me going the little I can go,

> which isn't much. Mostly I just sleep and hurt. Sorry

> for going on so long and being so down, this is why I

> haven't written in a long time, nothing positive to

> say.Hugs and love to all,Jani

[Guest guest]

Dr. Goldberg would tell you that the " new " autism IS a disease ( -

neuroimmune dysfunction) which is why the rates have sky-rocketed. No way

this is the old type of autism which only affected one in 10,000. Something

is causing it. I guess your question leads to whether " they " know something

they're not telling us. Pretty scary.

[Guest guest]

I would really love to know what the rest of you are thinking

regarding the CDC doing research on autism? Center for DISEASE

Control. Autism is not by definition a Disease. It seems like

they really don't have any reason to be conducting testing when

they were found to have a " Conflict of Interest " during the

2000 hearings with Dan Burton. Here's what I recently read...

The " Advocate " (ASA) first edition 2001 has an artcile. " Researchers

Identify Possible Autism Gene "

Possible???? The ASA is donating a fortune to the NIH and CDC. This

$42 million research initiative is part of an international network

of 10 research teams. So the results were that they tested 57 people

diagnosed with autism for a variant of the HOXA1 gene. 40% had one

copy. Only one person with autism carried 2 copies of the variant

gene. So now they think that it may be this gene in combination with

other genes or other environmental factors makes you more susceptible

to having autism.

Now--I am wondering if they are just spinning their wheels. All that

money. What if it is the mercury that is mutating genes? Then what?

Will they continue to spend extraordinary amounts of money to say,

maybe it is this gene paired with 8 other genes? How long would

this take?

Does anyone else see it this way? Everyone keeps giving them all

the funding. I can see that if THEY find something it will be

accepted by the AMA and everyone. So from that point I could see

it, but it doesn't make sense to me to continue to spend that much

money to look for a genetic link. For the last 50 years, that has

been the only agenda until recently. They haven't found anything

conclusive yet? I wonder why that is? (besides that there hasn't

been much scientific research to begin with)

> Dear listmates,

> Moria suggested a few months ago that I post a monthly newsletter

to the

> list as a way to keep in touch which I thought was a great idea.

Sorry this

> is so late. There have been a number of recent events that I

wanted to

> share with the list and ask for help on getting the word out.

> #1. On March 22, The National Institute of Environmental Health,

Dr.

> Olden's organization, invited a handful of parents and

researchers

> to NIH follow up on a meeting that had been held earlier

concerning the

> increasing incidence of Autism Spectrum Disorders. Thus far, NIEH

has been

> the most responsive NIH organization to our concerns that

thimerosal is the

> culprit behind this epidemic and has assured us that they would be

actively

> pursuing research in this area.

> #2 On the other hand, the CDC's National Immunization Program is

also

> proposing additional research based on the Vaccine Safety Datalink

findings

> of statistically significant associations between thimerosal

exposure from

> vaccines and ADD, speech delays neurodevelopmental and tics which

I do not

> feel as confident. They are planning to do a follow up study, which

will

> include neurodevelopmental testing in a population of children

exposed to

> thimerosal containing vaccines. Our concern is that there are a

number of

> flaws in the way the study has been designed which will result in no

> significant associations being identified. One of our biggest

concerns is

> that CDC is only looking at thimerosal exposure the first 3 months

of life.

> Mercury neurotoxicity is cumulative in nature and only looking at

exposures

> the first 3 months of life is just the " tip of the iceburg " . From

mercury

> pharmacokinetic modeling, we know that blood levels of mercury from

> thimerosal exposure do not reach their peak until 6 months of age.

Also,

> initial reports presented May 14, 200 at the American Academy of

Pediatrics

> meeting by found " Among children followed up to six

years of

> age, ethylmercury exposure at one and three months was not

associated with

> adverse neurodevelopmental outcomes " It was not until the data was

taken

> out to include the 6 month vaccines did statistical significant

begin to

> occur! If you would like more information on this study protocol

or to see

> our comments to CDC on this proposal, please go to

www.safeminds.org or to

> www.autism treatment.com (May not be up until tomorrow). Please feel

free to

> send your own comments to Dr. Mootrey too. We need to let these

agencies

> know that we are watching their work!

> #3. There are a number of events over the next month of interest.

The

> Government Reform Committee will be holding another round of

hearings on A

> autism April 25th. Dr. Boyd Haley, Chairman of the Chemistry

Dept. at the

> University of Kentucky, will be testifying concerning his research

with

> thimerosal. Dr. Wakefield, Dr. Bradstreet and others will be part

of the

> panel as well. The next day, Unlocking Autism is holding a two day

autism

> conference " The Power of One " where SAFE MIND's will be one of the

> organizations speaking at the Rally.

> #4. On May 11 and 12 Defeat Autism Now will hold their spring

conference in

> Atlanta. According to the agenda, there will be a panel discussion

of

> mercury the afternoon of the 12th and hopefully the much awaited

protocol

> will be discussed. SAFE MINDs is sponsoring a Candlelight Vigil

to be held

> in Olympic Centennial Park on the evening of May 10th, prior to the

DAN

> Conference. The park is just a 10 minute walk from the hotel. The

details

> are still be worked out and we will be putting up additional

information on

> our website in the next few days. We have also put up information

> concerning litigation resulting from thimerosal exposures on the

SAFE MINDs

> website so be sure to visit from time to time for new information.

Also,

> since my home based website has been down so much from exceeding

its traffic

> limit, my site has moved to www.autism treatment.com

> #6 Please look for Autism: A Unique Type of Mercury Poisoning

to be

> published in the April edition of Medical Hypothesis. There will be

another

> article on Mercury and Thimerosal in Vitamin Research Products

newsletter

> this month. Other research projects are in the process of peer

review and

> hope to be published soon.

> Last of all, I have received numerous complaints from list members

> concerning posting. Please lets all get along! I understand the

stress

> that everyone is under who has a child with autism, but while on

the list

> lets try to learn and help others. If you feel the need to curse,

discuss

> politics, religion or other personal matters, please do so in

private posts

> and try to stay focused on autism, mercury and helping our children

back to

> health! If you need to reach me for any reason, email to

> autism treatment@m...

> All my best to everyone on the list and thanks for all your time

and

> dedication!

> Sincerely,

> Lyn Redwood

[Guest guest]

,

Well, I guess I've always considered it a disease. I pretty

much have never accepted what the medical community had

accepted. From the beginning of my research. But, I just

think it is a load of crock that the CDC doesn't accept

anything without the " science " , yet they won't call it a

disease so that it gets researchers and the real money that

goes with research for diseases, (ie Cancer, Alzheimers, Aids, etc)

yet they want in on this one. It seems that the Center for Disease

Control, merely should be called Control. Since they like to

control everything yet not have any reasonable outcomes. (as

far as the study with the one gene...maybe) (I know they have outcomes

as far as disease control via vaccines)

Thanks for you insight! Yes, it is scary. (they know)

Shirley

> Dr. Goldberg would tell you that the " new " autism IS a disease

( -

> neuroimmune dysfunction) which is why the rates have sky-rocketed.

No way

> this is the old type of autism which only affected one in 10,000.

Something

> is causing it. I guess your question leads to whether " they " know

something

> they're not telling us. Pretty scary.

>

>

[Guest guest]

They won't find that it's mercury or other AMA introduced/sanctioned/promoted

metals/substances because on who funds them and who sits on the board! They'll

try to find/invent something which requires a prescription so the drug

manufacturers and doc will rake in more bucks (IMO)...

S

On Fri, 20 April 2001, " Shirley " wrote:

>

> <html><body>

> <tt>

> I would really love to know what the rest of you are thinking <BR>

> regarding the CDC doing research on autism? & nbsp; Center for DISEASE<BR>

> Control. & nbsp; Autism is not by definition a Disease. It seems like <BR>

> they really don't have any reason to be conducting testing when<BR>

> they were found to have a & quot;Conflict of Interest & quot; during the <BR>

> 2000 hearings with Dan Burton. & nbsp; Here's what I recently read...<BR>

> <BR>

> The & quot;Advocate & quot; (ASA) first edition 2001 has an artcile. & nbsp;

& quot;Researchers<BR>

> Identify Possible Autism Gene & quot; & nbsp; <BR>

> <BR>

> Possible???? & nbsp; The ASA is donating a fortune to the NIH and CDC. & nbsp;

This<BR>

> $42 million research initiative is part of an international network<BR>

> of 10 research teams. & nbsp; So the results were that they tested 57 people

<BR>

> diagnosed with autism for a variant of the HOXA1 gene. & nbsp; 40% had one <BR>

> copy. & nbsp; Only one person with autism carried 2 copies of the variant <BR>

> gene. & nbsp; So now they think that it may be this gene in combination with

<BR>

> other genes or other environmental factors makes you more susceptible<BR>

> to having autism. & nbsp; <BR>

> <BR>

> Now--I am wondering if they are just spinning their wheels. & nbsp; All that<BR>

> money. & nbsp; What if it is the mercury that is mutating genes? & nbsp; Then

what?<BR>

> Will they continue to spend extraordinary amounts of money to say, <BR>

> maybe it is this gene paired with 8 other genes? & nbsp; How long would <BR>

> this take? & nbsp; <BR>

> <BR>

> Does anyone else see it this way? & nbsp; Everyone keeps giving them all <BR>

> the funding. & nbsp; I can see that if THEY find something it will be <BR>

> accepted by the AMA and everyone. & nbsp; So from that point I could see <BR>

> it, but it doesn't make sense to me to continue to spend that much<BR>

> money to look for a genetic link. & nbsp; For the last 50 years, that has<BR>

> been the only agenda until recently. & nbsp; They haven't found anything <BR>

> conclusive yet? & nbsp; I wonder why that is? (besides that there hasn't <BR>

> been much scientific research to begin with) <BR>

> <BR>

> <BR>

> <BR>

> & gt; Dear listmates,<BR>

> & gt; Moria suggested a few months ago that I post a monthly newsletter <BR>

> to the<BR>

> & gt; list as a way to keep in touch which I thought was a great idea. & nbsp;

<BR>

> Sorry this<BR>

> & gt; is so late. & nbsp; There have been a number of recent events that I <BR>

> wanted to<BR>

> & gt; share with the list and ask for help on getting the word out.<BR>

> & gt; #1. & nbsp; On March 22, The National Institute of Environmental Health,

<BR>

> Dr.<BR>

> & gt; Olden's organization, invited a handful of parents and <BR>

> researchers<BR>

> & gt; to NIH & nbsp; follow up on a meeting that had been held earlier & nbsp; <BR>

> concerning the<BR>

> & gt; increasing incidence of Autism Spectrum Disorders. & nbsp; Thus far, NIEH

<BR>

> has been<BR>

> & gt; the most responsive NIH organization to our concerns that <BR>

> thimerosal is the<BR>

> & gt; culprit behind this epidemic and has assured us that they would be <BR>

> actively<BR>

> & gt; pursuing research in this area.<BR>

> & gt; #2 & nbsp; On the other hand, the CDC's National Immunization Program is

<BR>

> also<BR>

> & gt; proposing additional research based on the Vaccine Safety Datalink <BR>

> findings<BR>

> & gt; of statistically significant associations between thimerosal <BR>

> exposure from<BR>

> & gt; vaccines and ADD, speech delays neurodevelopmental & nbsp; and tics which

<BR>

> I do not<BR>

> & gt; feel as confident. They are planning to do a follow up study, which <BR>

> will<BR>

> & gt; include neurodevelopmental testing in a population of children <BR>

> exposed to<BR>

> & gt; thimerosal containing vaccines. & nbsp; Our concern is that there are a

<BR>

> number of<BR>

> & gt; flaws in the way the study has been designed which will result in no<BR>

> & gt; significant associations being identified. & nbsp; & nbsp; One of our biggest

<BR>

> concerns is<BR>

> & gt; that CDC is only looking at thimerosal exposure the first 3 months <BR>

> of life.<BR>

> & gt; Mercury neurotoxicity is cumulative in nature and only looking at <BR>

> exposures<BR>

> & gt; the first 3 months of life is just the & quot;tip of the

iceburg & quot;. & nbsp; From <BR>

> mercury<BR>

> & gt; pharmacokinetic modeling, we know that blood levels of mercury from<BR>

> & gt; thimerosal exposure do not reach their peak until 6 months of age. & nbsp;

<BR>

> Also,<BR>

> & gt; initial reports presented May 14, 200 at the American Academy of <BR>

> Pediatrics<BR>

> & gt; meeting & nbsp; by found & quot;Among children followed up to

six <BR>

> years of<BR>

> & gt; age, ethylmercury exposure at one and three months was not <BR>

> associated with<BR>

> & gt; adverse neurodevelopmental outcomes & quot; & nbsp; It was not until the data

was <BR>

> taken<BR>

> & gt; out to include the 6 month vaccines did statistical significant <BR>

> begin to<BR>

> & gt; occur! & nbsp; If you would like more information on this study protocol

<BR>

> or to see<BR>

> & gt; our comments to CDC on this proposal, please go to <BR>

> www.safeminds.org or to<BR>

> & gt; www.autism treatment.com (May not be up until tomorrow). & nbsp; Please feel

<BR>

> free to<BR>

> & gt; send your own comments to Dr. Mootrey too. & nbsp; We need to let these

<BR>

> agencies<BR>

> & gt; know that we are watching their work!<BR>

> & gt; #3. & nbsp; There are a number of events over the next month of

interest. & nbsp; <BR>

> The<BR>

> & gt; Government Reform Committee will be holding another round of <BR>

> hearings on A<BR>

> & gt; autism April 25th. & nbsp; Dr. & nbsp; Boyd Haley, Chairman of the Chemistry

<BR>

> Dept. at the<BR>

> & gt; University of Kentucky, will be testifying concerning his research <BR>

> with<BR>

> & gt; thimerosal. & nbsp; & nbsp; Dr. Wakefield, Dr. Bradstreet and others will be

part <BR>

> of the<BR>

> & gt; panel as well. The next day, Unlocking Autism is holding a two day <BR>

> autism<BR>

> & gt; conference & quot;The Power of One & quot; where SAFE MIND's will be one of

the<BR>

> & gt; organizations speaking at the Rally.<BR>

> & gt; #4. & nbsp; On May 11 and 12 Defeat Autism Now will hold their spring <BR>

> conference in<BR>

> & gt; Atlanta. & nbsp; According to the agenda, there will be a panel discussion

<BR>

> of<BR>

> & gt; mercury the afternoon of the 12th and hopefully the much awaited <BR>

> protocol<BR>

> & gt; will be discussed. & nbsp; SAFE MINDs is sponsoring & nbsp; a Candlelight

Vigil <BR>

> to be held<BR>

> & gt; in Olympic Centennial Park on the evening of May 10th, prior to the <BR>

> DAN<BR>

> & gt; Conference. & nbsp; The park is just a 10 minute walk from the hotel. & nbsp;

The <BR>

> details<BR>

> & gt; are still be worked out and we will be putting up additional <BR>

> information on<BR>

> & gt; our website in the next few days. & nbsp; We have also put up

information<BR>

> & gt; concerning litigation resulting from thimerosal exposures on the <BR>

> SAFE MINDs<BR>

> & gt; website so be sure to visit from time to time for new information. & nbsp;

<BR>

> Also,<BR>

> & gt; since my home based website has been down so much from exceeding <BR>

> its traffic<BR>

> & gt; limit, my site has moved to www.autism treatment.com<BR>

> & gt; #6 & nbsp; Please look for & nbsp; & nbsp; Autism: A Unique Type of Mercury

Poisoning & nbsp; <BR>

> to be<BR>

> & gt; published in the April edition of Medical Hypothesis. There will be <BR>

> another<BR>

> & gt; article on Mercury and Thimerosal in Vitamin Research Products <BR>

> newsletter<BR>

> & gt; this month. & nbsp; Other research projects are in the process of peer <BR>

> review and<BR>

> & gt; hope to be published soon.<BR>

> & gt; Last of all, I have received numerous complaints from list members<BR>

> & gt; concerning posting. & nbsp; Please lets all get along! & nbsp; I understand

the <BR>

> stress<BR>

> & gt; that everyone is under who has a child with autism, but while on <BR>

> the list<BR>

> & gt; lets try to learn and help others. & nbsp; If you feel the need to curse,

<BR>

> discuss<BR>

> & gt; politics, religion or other personal matters, please do so in <BR>

> private posts<BR>

> & gt; and try to stay focused on autism, mercury and helping our children <BR>

> back to<BR>

> & gt; health! & nbsp; & nbsp; If you need to reach me for any reason, email to<BR>

> & gt; autism treatment@m...<BR>

> & gt; All my best to everyone on the list & nbsp; and thanks for all your time

<BR>

> and<BR>

> & gt; dedication!<BR>

> & gt; Sincerely,<BR>

> & gt; Lyn Redwood<BR>

> <BR>

> </tt>

>

> <br>

>

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> =======================================================<BR>

>

[Guest guest]

Excellent News!!!

What protocol are you using? How much does Ben weight? DMSA, or

DMSA/ALA, or ALA, or what type of intervention are you seeing success

with? What dose works for Ben? How many days on/off? How many

hours apart? For give me if you have posted this information before,

but there are soooo many people chelating with success that it is hard

to remember who is doing what.

Thank you for sharing the Great News!

Cathie

Austin's Mom

> I just wanted all of you to know how Ben is doing. He is almost 4

(in June), lost all language with his shots, didn't even attempt to

copy sounds for a long time. He's finally starting to copy sounds,

and has even said a couple of words! I'm so excited! I know that

we're doing the right thing. His therapists have all remarked what

great progress he's making. I actually think in a few years we'll be

close to having our little boy back.

>

> Kris

> aka@m...

>

>

>

>

[Guest guest]

Cathie -

I haven't posted the info before. Sorry. Ben weighs 40 lbs. We have been

chelating with DMSA alone every 4 hours, 3 days on/4 days off for about 6

months, with a couple of breaks due to illness. We just raised his dose to

50 mg a few weeks ago and he seems to be doing great. His test levels show

that he still isn't ready to move onto DMSA/ALA yet, but we're getting

there. Thanks to the whole list for all of your continual support!

Kris

aka@...

[ ] Re: Update

> Excellent News!!!

>

> What protocol are you using? How much does Ben weight? DMSA, or

> DMSA/ALA, or ALA, or what type of intervention are you seeing success

> with? What dose works for Ben? How many days on/off? How many

> hours apart? For give me if you have posted this information before,

> but there are soooo many people chelating with success that it is hard

> to remember who is doing what.

>

> Thank you for sharing the Great News!

>

> Cathie

> Austin's Mom

>

>

> > I just wanted all of you to know how Ben is doing. He is almost 4

> (in June), lost all language with his shots, didn't even attempt to

> copy sounds for a long time. He's finally starting to copy sounds,

> and has even said a couple of words! I'm so excited! I know that

> we're doing the right thing. His therapists have all remarked what

> great progress he's making. I actually think in a few years we'll be

> close to having our little boy back.

> >

> > Kris

> > aka@m...

> >

> >

> >

> >

[Guest guest]

Thanks for the encouraging update, . We all celebrate when we

hear stories like this.

I'd like to ask some specific questions. When you treated for yeast,

was that based on labs (OAT/CSA) or did you just treat based on

observation? What was the diflucan dosing?

So when you did the first 9 rounds, did he do well at first during ON

days, then regressed off cycle? Was this true both for DMSA and

DMSA/ALA (better on, worse off cycle)? Or did he generally decline

for the first 6 rounds, till you added the ALA?

We have recently added ALA and I just sent urine and stool off,

because I too want to know exactly what's coming out.

[Guest guest]

Hi,

Well we observed some regression in Blake after the 9 rounds of

chelation....loss of coordination, decreased speech, sudden laughing for no

reason, spaciness, less eye contact. I suspected that it could be the yeast so

I did the Organic Acid Test (which I really like) and the stool test for Great

Smokies(expensive, my insurance wont pay, and I am not sure it told me more than

already knew from OAT). Both said he has yeast issues, fairly substantial

levels. My son weighed about 31 lbs and his Diflucan subscription was as

follows:

Fluconazole 40mg/ML ..... Give 1.5 ml once everyday for ten days , then ten

days off, then repeat. I was suppose to do a total of three times but I stopped

after two rounds because he seemed to be back to " his normal self " and then

some. We saw major progress at this point. Telling me things, asking me

things, following limited directions. I think I was able then to see the full

effects of chelation and the clearing of the yeast...which obviously hampers his

development.

On DMSA alone, I used the more gentle dosing that Andy would recommend. I didnt

see a lot of side effects either way. Maybe a little congestion, maybe a little

less energenic. Monday after maybe a little more cranky. But as the week

progressed I could ussually see some improvement but not like MAJOR oh my gosh

progress. When I added ALA, I dont remember seeing much in the way of negative

side effects....lots of positive though..takling, seeming clearer in his thougt

processing etc. AGain, I used the lower dosing. I was impressed by what we saw

when we added the ALA. My husband and I both were.

I saw what I wanted to see in the stool when I added ALA. I hope you do too.

ANYONE: Not sure why I am not seeing the mercury yet??? Am I on to something or

are we just not going to get the mercury? Do other metals sometimes come first?

Good luck with your chelation efforts...none of this is an easy road. I cant

believe that I prayed and begged every angel and God to help me get that poop

sample either....... " show me the metals " ...my new motto. LOL My son didnt

want me to get the sample but a moms got to do what a moms got to do.

Take care all,

[ ] Re: update

Thanks for the encouraging update, . We all celebrate when we

hear stories like this.

I'd like to ask some specific questions. When you treated for yeast,

was that based on labs (OAT/CSA) or did you just treat based on

observation? What was the diflucan dosing?

So when you did the first 9 rounds, did he do well at first during ON

days, then regressed off cycle? Was this true both for DMSA and

DMSA/ALA (better on, worse off cycle)? Or did he generally decline

for the first 6 rounds, till you added the ALA?

We have recently added ALA and I just sent urine and stool off,

because I too want to know exactly what's coming out.

=======================================================

[Guest guest]

Thank you for sharing this, and congratulations for achieving so much.

[ ] update

> Hi,

>

> Someone had asked about metal tests with just DMSA and then w/ ALA.

>

> So I thught I would comment on that and on recovery.

>

> We have only done 9 rounds of chelation--we saw a lot even from this short

of time however.....by the 9th round my sons yeast was so bad that you

wouldnt know chelation had helped him..he had regressed so much--first time

he had done this since the original regression into autism. He lost

coordination, major decrease in verbalization and spacey, less eye contact

again. Thankfully realized yeast issue...we treated this with two rounds

of low dose diflucan. And wo-who! Our son was showing us all the ways he

functioned better from the chelation and the yeast treatment. As far as

tests go...

>

> I did multiple urine tests during the DMSA only period...I was seeing very

little come out. A little mercury, a little lead, arsenic, cadmium . Then

when I added the the ALA, I was not seeing the unhappy behavior during the

round.....???

>

> Still confused about this...should I see poor behavior? Anyway my son,

from about two hours into the round with DMSA / ALA would be so talkative

and so clear as a bell that after each round (this went on for three rounds)

my husband and I knew this was not a fluke as our necks hurt from doing so

many double takes.

> We tested his stool when it came to the ALA as Dr Holmes said during a

conference that she found in her work of chelating so many kids, that they

seemed to find the metals comeout in the stools when using ALA/DMSA. SO

when I did the stool test, this time he really dumped more stuff....a good

deal of cadmium, aresenic, uranuim, nickel, and some bismuth, copper, lead,

and only a teensy bit of mercury.

>

> So I did see more come out (it would seem) with the ALA added--however

looked at stool and urine. STill feel like I didnt see anything in the red

yet and dont know if I am on to something and should keep going. Hate to

see those yeast come back but do think that ALA does something for him.

> ANy thoughts here??

>

> AS for recovery, I have to admit that my son is looking pretty awesome.

He has been on a beautiful course upward and out of the autism abyss with

organic diet, then GFCF, the supplements(nothing too exotic here),

chelation, and yeast treatment. Each of these have helped him tremendously.

SOme people could look at him and think he is fine. Doesnt do awkward,

stimmy behaviors that get you noticed, beautiful eye contact, friendly, says

hello to everyone, asks questions to passersby like " WHats your dogs/babies

name?, after chelated, he knew what we were saying to him and could answer

questions and follow directions (couldnt do this before that), . Do I think

he is cured? ...he is a five yearold in a three year old world now I'd

say....no I dont think so. He has quirks that I think he will have to deal

with or we still need to work on that others wouldnt maybe see by spending a

few minutes with him. He will prbably have trouble with abstract

concepts, this kid can totally read but will he comprehend one day?, he has

interests in things in a different way that others do...a bit obsessive, and

most importantly, I have done a lot of tests on this kid and even though he

acts and looks absolutely beautiful on the outside , he is a sick kid....he

is autistic or whatever the heck you want to call this disaster .....the one

that toppled him at 18 months old. Have we fixed some of it yes, but its

still there.

> Blake's mom (sorry for the long post but thought it might be

helpful to someone)

>

>

>

[Guest guest]

glad you got some sleep tess. hope all gets better for you soon. kathy in il

[Guest guest]

> Great news Tess! Sleep does wonders for a weary body. I hope last night¹s

> sleep is the beginning of regular sleep. Those choking episodes sound pretty

> rotten.

> I¹m really curious about the sudden lack of psoriasis. Are you on

> antibiotics?

> I¹ve heard that tonsillectomies are brutal for adults. I¹m sorry you had to

> experience it. Hope you continue to improve!

> hug,

> a

>

>

>

>

>

>

> Hi...last night I slept! First night in ten days. It was wonderful.

>

> Not to be too graphic here, but I had NO idea of the amount and type of

> horrible yucky stuff one has to cough up during this process. I was

> expecting tha pain and tiredness, but the choking and coughing up of

> copious amounts of yuck threw me for a loop.

>

> I can talk a little, but not for too long. The phone is just about

> impossible. The earraches are bad, but I've found that wrapping a

> warmed rice bag around my upper neck stops the ear pain in just a few

> minutes.

>

> I was tolerating cold better than warm, but now cold hurts terribly.

> I'm just doing baby steps.

>

> Next week I get to go back on schedule with Remicade & Mtx.

>

> I'm glad I'm doing as well as I am. I really had no real idea how much

> pain and discomfort and fear would be involved in this recovery. I had

> lots of people tell me it is really difficult, but I guess you can't

> always 'get it' til t happens. When I'd go into a choking fit, it was

> violent. The last one I had was last night and I PRAY I'm past those

> now.

>

> One thing sort of interesting....I haven't had one little patch of

> psoriasis at all since the surgery. I almost always have some of it

> going on somewhere.

>

> Wishing you all a peaceful, comfortable evening.

>

> Hugs....

>

> Tess

>

>

>

[Guest guest]

Tess, so glad you got to sleep, that is so important to getting

better. Hope you are feeling better with each day.

in WA

[Guest guest]

Tess, that's great that you've finally gotten a good night's sleep! I know

you've had a hard time post-op, but hopefully you're out of the woods now.

Take it easy and have a good weekend.

Love,

Carol

[ ] update

Hi...last night I slept! First night in ten days. It was wonderful.

Not to be too graphic here, but I had NO idea of the amount and type of

horrible yucky stuff one has to cough up during this process. I was

expecting tha pain and tiredness, but the choking and coughing up of

copious amounts of yuck threw me for a loop.

I can talk a little, but not for too long. The phone is just about

impossible. The earraches are bad, but I've found that wrapping a

warmed rice bag around my upper neck stops the ear pain in just a few

minutes.

I was tolerating cold better than warm, but now cold hurts terribly.

I'm just doing baby steps.

Next week I get to go back on schedule with Remicade & Mtx.

I'm glad I'm doing as well as I am. I really had no real idea how much

pain and discomfort and fear would be involved in this recovery. I had

lots of people tell me it is really difficult, but I guess you can't

always 'get it' til t happens. When I'd go into a choking fit, it was

violent. The last one I had was last night and I PRAY I'm past those

now.

One thing sort of interesting....I haven't had one little patch of

psoriasis at all since the surgery. I almost always have some of it

going on somewhere.

Wishing you all a peaceful, comfortable evening.

Hugs....

Tess

[Guest guest]

Hi Tess,

Thanks for your wonderful caring words. Now, for you young lady. Prayers

are being said without even asking for the Good Lord to help with this nasty

monster called Obesity. It does sound like you are making slow steady

progress with your post op course. I think that is the way to approach the

weight loss issue. That is what I am doing at this time. We are eating

healthier here at home and weather permitting, I get out in the pool. Oh

yeah, knee permitting too! My ortho doc doesn't miss a chance to tell me

that my knee problem would not be so bad, if I was not as heavy as I am.

Well, in a perfect world, I would not be this heavy, however, in reality, I

can't lob off 50 lbs in a week or so, so he will have to be satisfied with

heavy and fit. However, I do try to subtract and not add to the situation.

I have been on every known diet to western man. The only one that I have not

done is the gastric bypass surgery. However, with my current state of health

or lack there of, I don't even know if I would want to be a candidate for

that surgery. Now, more and more insurance companies are no longer covering

this procedure, so I guess that I have missed the boat on that one also.

Well, sweetie, we are going to concur this situation too, together, one day

at a time. I am going to plug away from my coast and you are going to plug

away at your coast. Our gift to ourselves for attaining our goal will be a

trip to the midwest (1/2 way between both coasts) and use the money that we

saved from not having the gastric bypass surgery! Sounds like a plan, huh?

Hang in there, God will show us the way. He has held us up this far and will

continue to shine upon us.

Talk to you soon!

Love,

Deb

[Guest guest]

<< I love you all dearly, and you are always in my

prayers. >>

The same goes to you, Tess.

I'm so glad to hear the Remicade is making a difference for you. It would

be even worse if you had to worry about recovering from the surgery and

dealing with more severe RA symptoms.

Hope you have a reasonably comfortable 4th of July weekend!

Love,

Carol

[ ] update

Hi Friends...today was an appt. with my rheummy...he was very happy with

my response to Remicade. He says he notices how much less stiff my

whole body is, as well as the particular troublesome joints. He is

keeping me on a 7 week Remicade cycle.

After I heal from this throat surgery, he is encouaging me to follow up

with the neurosurgeon re: the hernations at L4, L5 and the pronounced

foot drop. He also wants me to really address losing some weight.

Sigh...that is the hardest thing I think, but I really want to. I am

still inquiring about weight loss surgery, but the truth is that there

is no guarentee my insurance will cover it and I don't have $20,000+ in

my pocket - most folks don't. So, I need to begin seriously addressing

this " morbidly obese " issue the best that I can on my own. I cannot

wait months or years for a surgery to be approved. All your prayers

regarding this are requested.

I am grateful the Remicade is working well, and I feel very fortunate to

be receiving it when others are on various waiting lists for the

medications they need. I love you all dearly, and you are always in my

prayers.

Many Hugs...

Tess

[Guest guest]

Hi Tess,

Glad to hear that you are having some success with Remicade. About the

weight loss, it take time and hard work. It is so much easier to put it on.

Couple of pointers. Don't deprive yourself. Everything in moderation. A

normal stomach is about the size of your closed fist. I am also trying to

lose some weight. With my recent back surgery and other problems, I have had

a lot of prednisone and have ballooned over 25 lbs in the past 3-4 months. I

feel awful and need to work on this also. Nothing fits and I have a hard

time moving, so it is time to do something about it. PCP says that I should

wait until the Pred dose is lower and stable, but I really can't stand this

extra poundage. Good luck and happy thoughts.

Love and Hugs,

Stacey in PA

[Guest guest]

Thanks for the info, ! I will definately check them out.

Love & Hugs...

Tess

[Guest guest]

,

Hi and thank you for the link. I am going to try arthritis-dieters. My

membership is pending at this time. So I guess the next step is waiting for

the questionnaire.

I don't think it can hurt and at least I will be with my own kind. Thanks

again!

Gentle, tender, angel hugs,

Debs in FL

[Guest guest]

Hi

that is incredible that is working with such a dramatic infect...feel like

having a MCINERET burger...sorry but i am envying you without knowing much

about the drug..but that sure is dramatic...i look forward to the groups

input on the kineret and the experiences also.

i am glad you got a doctor that takes your misery with some compassion

sam

[ ] Update

> Hello all!

> I hope everyone is having a good 4th. I haven't posted as I am/was

> going through a wicked flare. I had changed Dr's, and my new Rheumy

> seems to be taking my constant misery a lot more seriously than my

> old Dr. That brings me to why I am posting...

> He got me into a Kineret study, ( they are looking into taking

> Kineret 3x a week instead of daily injections ) I just took my 2nd

> dose of the blind study drug. It could have been a placebo or 400 mg

> of Kineret. There is no doubt in my mind I am taking Kineret! The

> difference is just incredible. I can walk without feeling like the

> tendons in my knees are too short, the stiffness is completely gone!

> That was yesterday, today the swelling in my wrists is almost

> completely gone, and I can take my rings off for the first time in 6

> mos. This stuff is just incredible. I feel like a whole new

> person. This gives a whole new meaning to independence day. :0)

> The question is, how much is this stuff gonna cost when the 6 month

> study is over and I have to pay for this out of my own, very shallow,

> pocket??? Any body out there know? Thanks again

>

>

>

>

>

[Guest guest]

Sam,

The difference is amazing. I have been struggling along on MTX

12mg a week and 10mg Pred a day, and slowly getting worse. The drug

whatever it is, is just amazing.

Part of the difference is that I haven't taken any other drugs

prior to this, my old Rhuemy wouldn't prescribe anything for the

constant pain. Not Tylenol, not 'nothin. With this stuff I don't

need anything else. I took a bath today for the first time in 2

years! I have had to take showers 'cuz I could never be sure I could

get out of the tub. I might just get my life back.

I've missed taking baths, riding horses, doing needlework, walking

my dog, opening my own cans and jars. I had to move back in with my

parents ( at 33...) because I just couldn't keep up with daily life.

I might actually be able to move out on my own again, ( maybe a

little to soon to think like that, but I can dream. ) I feel so much

better, and I can feel hope blooming again. What a wonderful drug!

And thanks for the link, I'll will get the ball rolling for sure.

Daily injections are not a problem, 3x a week would be better, but

hey! I can give myself my own damn injections! Incredible!

WAHOO!!!!!!!!!!

> Hi

> that is incredible that is working with such a dramatic

infect...feel like

> having a MCINERET burger...sorry but i am envying you without

knowing much

> about the drug..but that sure is dramatic...i look forward to the

groups

> input on the kineret and the experiences also.

> i am glad you got a doctor that takes your misery with some

compassion

> sam

> >

> >

[Guest guest]

hi...

wow...that is amazing..even the energy with which you write...and a bath for

the first time in two years..

that is a wonderful result....

truly

smile

sam

[ ] Re: Update

> Sam,

> The difference is amazing. I have been struggling along on MTX

> 12mg a week and 10mg Pred a day, and slowly getting worse. The drug

> whatever it is, is just amazing.

> Part of the difference is that I haven't taken any other drugs

> prior to this, my old Rhuemy wouldn't prescribe anything for the

> constant pain. Not Tylenol, not 'nothin. With this stuff I don't

> need anything else. I took a bath today for the first time in 2

> years! I have had to take showers 'cuz I could never be sure I could

> get out of the tub. I might just get my life back.

> I've missed taking baths, riding horses, doing needlework, walking

> my dog, opening my own cans and jars. I had to move back in with my

> parents ( at 33...) because I just couldn't keep up with daily life.

> I might actually be able to move out on my own again, ( maybe a

> little to soon to think like that, but I can dream. ) I feel so much

> better, and I can feel hope blooming again. What a wonderful drug!

> And thanks for the link, I'll will get the ball rolling for sure.

> Daily injections are not a problem, 3x a week would be better, but

> hey! I can give myself my own damn injections! Incredible!

> WAHOO!!!!!!!!!!

>

>

>

> > Hi

> > that is incredible that is working with such a dramatic

> infect...feel like

> > having a MCINERET burger...sorry but i am envying you without

> knowing much

> > about the drug..but that sure is dramatic...i look forward to the

> groups

> > input on the kineret and the experiences also.

> > i am glad you got a doctor that takes your misery with some

> compassion

> > sam

>

> > >

> > >

>

>

>

>

>