Results

[Guest guest]

Vicki,

He gave me the blood titre test. I was on abx not long ago for the flu,

I was on Zithromax. I love that stuff, I never felt so good in my whole

life. With me having an HMO its hard to get help.

Anne

Re: [ ] Results

From: " Vicki Ferraro " <ferraroa@...>

Anne,

What tests were done? And does your doctor use the tests to treat you,

since you know by now the tests aren't very reliable, and if you've been on

antibiotics they are even less reliable. Vicki, Md

>From: Anne Marie SBCCOM <anne.rhodes@...>

>

>Well my blood work came back negative this time for Lyme

Send to -Offtopiconelist messages unrelated to lyme, please.

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To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

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[Guest guest]

Anne,

What tests were done? And does your doctor use the tests to treat you,

since you know by now the tests aren't very reliable, and if you've been on

antibiotics they are even less reliable. Vicki, Md

>From: Anne Marie SBCCOM <anne.rhodes@...>

>

>Well my blood work came back negative this time for Lyme

[Guest guest]

Anne,

What is the blood titter test? Do you mean Western Blot IGg & IGm, or some

other test? Sorry for so many questions.

Vicki, Md

>From: Anne Marie SBCCOM <anne.rhodes@...>

>

>Vicki,

>

>He gave me the blood titre test.

[Guest guest]

There is much information here for your answer. Please refer to the

index.

Leo.

------------------------------------------------------------------

> I'm relatively new to this group and looking for others who have

used

> Dr. 's methods. Would any of you care to share your personal

> results? And... which methods did you use? Thanks.

[Guest guest]

swallowing toothpaste seems to be a culprit for some people.

[ ] results

>I got my sons test back today. He did three days of DMSA three times a day

>and than did his urine test. It came back showing 5x's the extremely high

>level of tin, lead slightly elevated moderate mercury and a little arsenic.

>Does anyone know why his tin would be so high? Is this fairly typical with

>the first test? Thanks,

>

>

>

[Guest guest]

I brush my daughter's teeth with baking soda and water ever since I saw the

poison warning on the tubes of toothpaste!!

[ ] results

>

>

> >I got my sons test back today. He did three days of DMSA three times a

day

> >and than did his urine test. It came back showing 5x's the extremely

high

> >level of tin, lead slightly elevated moderate mercury and a little

arsenic.

> >Does anyone know why his tin would be so high? Is this fairly typical

with

> >the first test? Thanks,

> >

> >

> >

[Guest guest]

Hi there, what are you saying they should be tested for - has anyone else

had these tests done - would love to hear your story

Cheers H

[ ] results

> I don't think I've posted to this group before, but we started our

> 2.5 yo daughter, , on enzymes about 5 weeks ago. has a rare

> chromosomal disorder known as IsoDicentric 15. She is pretty much

> globally developmentally delayed. IDIC15 is the #1 known cause of

> Autism. In fact, we've had some professionals suggest to us recently

> that we should consider changing the name to Autism15. Many of the

> children go undiagnosed for years simply because the doctors stopped

> with the label of autism and didn't test furthur. That is a story in

> itself, though!

>

> I started her on an incredibly low doseage (about 1/8 capsule

> 1/day). I was really nervous about side effects. She has not

> exhibited any side effects thus far. In fact, we've seen some

> exciting improvements, especially since increasing her to 1 full

> capsule of Prime-Zyme and Peptizyde with each meal. We started that

> this week. She has 6 therapies/week right now, and each therapist

> commented on her stellar performance this week!!! We chose not to

> tell some of her therapists that we had started her on them, so we

> could get a true, unbiased opinion.

>

> We've seen an improvement in her speech/vocabulary, eye contact, and

> interaction (especially with her sisters!). I am so excited with the

> changes and look forward to more success!

>

> & Ron

> Holly 12/1/97

> 11/3/99 (IDIC15)

> Ellie 5/7/01

>

>

>

>

[Guest guest]

what are you saying they should be tested for - has anyone else

> had these tests done - would love to hear your story

> Cheers H

Hi ,

was born full term after an uneventful pregnancy. She was taken

to the NICU about an hour after birth because of respiratory distress

where she spent a week being treated with nonbacterial pneumonia. We

had NO clue that there were any furthur problems until she was about

3-4 mos. old. We noticed that her eyes were a bit crossed and that

she wasn't batting at toys. We saw a ped. optometrist and she was

put in glasses. Soon after, we started OT. We realized she still

wasn't meeting a couple of milestones, so we took her to a

neurologist. Luckily, he just ran a whole battery of tests to leave

no stone unturned, including a chromosome study using FISH

(Fluorescence In Situ-Hybridization) analysis. This is when they

found the marker chromosome. At the time, was by far the

earliest case diagnosed within the group of parents we talk with. I

know of one case in particular where the " child " was 16 when they got

the diagnosis....up to that point, he was labelled Autistic. There

are many other cases similar to his. Now, I don't want to alarm

anyone into thinking that their child has IDIC15. I'm not saying

it's *not* possible, but I hope I'm not scaring anyone. 's

problems go furthur than the Autism, though. She is hypotonic, has

SI problems, and some level of MR (though she is still a little young

to know exactly the extent). Nonetheless, she continues to amaze

us! In fact, since my last post, she said " love you " for the first

time ever-unprompted, at that!!! She blesses us with miracles

daily!

I guess that if your child has an autism label, it couldn't hurt to

at least check out the IDIC15 website to see if he/she fits into any

of the common traits. I'm sure the odds are pretty low, it *is*

still pretty rare, but certainly not unheard of. Our group is

growing pretty steadily!

& Ron

Holly 4.4, 2.5 (IDIC15), Ellie 1 in 2 weeks!

[Guest guest]

Thank you for that - what is the website address please

Cheers mary H

[ ] Re: results

> what are you saying they should be tested for - has anyone else

> > had these tests done - would love to hear your story

> > Cheers H

>

>

> Hi ,

>

> was born full term after an uneventful pregnancy. She was taken

> to the NICU about an hour after birth because of respiratory distress

> where she spent a week being treated with nonbacterial pneumonia. We

> had NO clue that there were any furthur problems until she was about

> 3-4 mos. old. We noticed that her eyes were a bit crossed and that

> she wasn't batting at toys. We saw a ped. optometrist and she was

> put in glasses. Soon after, we started OT. We realized she still

> wasn't meeting a couple of milestones, so we took her to a

> neurologist. Luckily, he just ran a whole battery of tests to leave

> no stone unturned, including a chromosome study using FISH

> (Fluorescence In Situ-Hybridization) analysis. This is when they

> found the marker chromosome. At the time, was by far the

> earliest case diagnosed within the group of parents we talk with. I

> know of one case in particular where the " child " was 16 when they got

> the diagnosis....up to that point, he was labelled Autistic. There

> are many other cases similar to his. Now, I don't want to alarm

> anyone into thinking that their child has IDIC15. I'm not saying

> it's *not* possible, but I hope I'm not scaring anyone. 's

> problems go furthur than the Autism, though. She is hypotonic, has

> SI problems, and some level of MR (though she is still a little young

> to know exactly the extent). Nonetheless, she continues to amaze

> us! In fact, since my last post, she said " love you " for the first

> time ever-unprompted, at that!!! She blesses us with miracles

> daily!

>

> I guess that if your child has an autism label, it couldn't hurt to

> at least check out the IDIC15 website to see if he/she fits into any

> of the common traits. I'm sure the odds are pretty low, it *is*

> still pretty rare, but certainly not unheard of. Our group is

> growing pretty steadily!

>

> & Ron

> Holly 4.4, 2.5 (IDIC15), Ellie 1 in 2 weeks!

>

>

>

>

[Guest guest]

> Thank you for that - what is the website address please

> Cheers mary H

The website address is www.idic15.org

And if you go to the site, our daughter is the first child pictured.

She is wearing a white hat. She was about 10 mos. old at the time.

[Guest guest]

hi michele

we got saras test results back a few weeks ago. she placed 99th out of 100,

so i know exactly how you feel. i cried for 3 straight days until some great

friends of mine snapped me out of my little pity party.

what is important is that you are a great mother and doing everything

possible you can to help your son, and that he is happy, safe and secure,

not what some test says.

also, they made me realize that the person administering the test has seen my

daughter for an hour or two of her life, unlike us mothers that are there

every minute of every day, and how could i let them be the author of my

childs life? and if samuel happened to feel bad that day for what ever

reason (hungry, tired, not feeling well, anxious around strangers.....etc)

that could have negatively affected the test results as well.

while i still find myself trying to cling to the hope that one morning i will

wake up and sara will magically be " cured " in reality i know that we have

many uphill battles ahead of us. but i am her mother and i will fight every

one of those battles to the very end, and i refuse to believe that there is

no hope. dont ever let anyone make you feel that it is hopeless. you can

see the hope every day, when your child smiles at you, learns something new,

or even just seems more aware of their surroundings than they did yesterday.

samuel needs you to hope for him. nobody is ever going to love or care for

your child more than you do, and the love you have for him makes him a very

lucky boy already!

tami

p.s. i would also like to add that in the weeks since we have gotten the

test results, sara has added 3 words to her vocabulary (sock, bye-bye, and

wheeee!} so we now have 6 words. she also has learned to wave bye-bye and

on mothers day she took her very first unassisted steps.

[Guest guest]

Hi Michele -

I just wanted to tell you that I can relate with how you feel. I remember

when my son was 3 and he had an extensive speech evaluation done, it

came back that his speech level was that of an 8 month old baby. I felt

like I had been kicked in the stomach. I did my share of crying when I was

alone too but I also wanted to tell you that my son talks in full sentences

now at 4 years 1 month old. All of that progress in one year full of Pro

EFA, speech therapy and a wonderful school. I'm sure your time will come

when will talk your ear off but in the meantime, know that there are

a lot of people here who feel or have felt the same as you. We're all in

this together!

in NJ

KDR@...

mom to 4.1 and 6.5

[Guest guest]

---

Thanks it's really good to hear. It just seem to be taking so long.

But today he had his first friend that he choose come round to play

before that I have invited kids but he wanted this little girl to

play so that is so cool!

Michele

In @y..., Rothweiler <kdr@c...> wrote:

> Hi Michele -

> I just wanted to tell you that I can relate with how you feel. I

remember

> when my son was 3 and he had an extensive speech evaluation

done, it

> came back that his speech level was that of an 8 month old baby. I

felt

> like I had been kicked in the stomach. I did my share of crying

when I was

> alone too but I also wanted to tell you that my son talks in full

sentences

> now at 4 years 1 month old. All of that progress in one year full

of Pro

> EFA, speech therapy and a wonderful school. I'm sure your time

will come

> when will talk your ear off but in the meantime, know that

there are

> a lot of people here who feel or have felt the same as you. We're

all in

> this together!

>

> in NJ

> KDR@c...

> mom to 4.1 and 6.5

[Guest guest]

Hello to Mikealso2002,

Let me start by saying that I'm not an expert on Hep C or the treatment of, my only qualification is that I have the virus. In May of 2002, I got my results back, and if I remember correctly, I was a 3/4. Now, the way it was explained to me, the damage to my liver was minimal, with no sign of cirrhosis and I was a type 2 genome. My doctor advised me to start treatment, that it was a "no brainer."

By your biopsy results being a "2" is that on a 1 to 10 scale, with 1 being the least damage, and 10 the most? If that is the case, along with you being a 1A genome, why is the doctor pushing for TX so fast?

If I knew back in '02, what I know now, I don't think I would have opted for treatment. If you're not showing any symptoms, and feel good, I would hold off for a little while, and go with some natural remedies for now. The side effects of Intron/Rebatol treatment for some people (me for one) are not pleasant.

Please don't misunderstand what I am telling you. I'm not a "no TX at any cost" type of person, it's just that I now know I would have thought longer & harder, and done much more research, before I had started my treatment.

By the way, I had to stop my treatment after 3 months of a 6 month treatment run, because of the very bad side effects I was having.

Let me know what happens.

Mike/NYC

[Guest guest]

mike

thank you for your answer and reply.

to be honest with you i have discomfort 90% of the day and the ill feelings come and go...i have been told that i have to go the 48 week treatment. i am ready to get this over with already! just slay the dragon, and be done.

I must say that this is the beginning of a journey that iam eager to learn alot from.with eyes wide open!,

nan

ps my sister loves nyc i havent been there in about 15 years

we plan on taking my mom there for her 75th in 2005.

love & peace.

[Guest guest]

it would be wonderful if it were that simple--better do your homework. If you end up not clearing the virus (type 1's are hardest to treat), and end up with side effects of treatment that never go away, you could be sick 100% of the day, and 100% of the night, too. How would you like that? Better start taking responsibility for your own health and not giving it away to a doc that does not have to live in your body, and most likely couldn't care less what you feel like.....just my take--by the way I'm doing absolutely wonderful on my all-natural protocol, which all of you are aware of. If you are jumping into treatment that quickly, it doesn't look like you have your eyes open at all. Sounds like they're shut up tight to me....This letter may sound harsh, but I don't believe in babying people--I tell it like it is--maybe you will wake up and take a look at all that tx treatment entails before you make a mistake you can't reverse.....take care and blessings, Satya --- ps, if you end up choosing treatment (tx) after becoming INFORMED, then I would certainly respect your personal decision to do traditional tx treatment....it's just not safe (or smart) to go off half-cocked, as you are......

Re: [ ] Results

mike thank you for your answer and reply.to be honest with you i have discomfort 90% of the day and the ill feelings come and go...i have been told that i have to go the 48 week treatment. i am ready to get this over with already! just slay the dragon, and be done. I must say that this is the beginning of a journey that iam eager to learn alot from.with eyes wide open!,nanps my sister loves nyc i havent been there in about 15 yearswe plan on taking my mom there for her 75th in 2005.love & peace.

[Guest guest]

Also, you don't HAVE to do anything. Your doctor works for YOU--not the other way around. You don't have to accept treatment just because some doctor says you HAVE to...better get a clue......blessings, Satya

Re: [ ] Results

mike thank you for your answer and reply.to be honest with you i have discomfort 90% of the day and the ill feelings come and go...i have been told that i have to go the 48 week treatment. i am ready to get this over with already! just slay the dragon, and be done. I must say that this is the beginning of a journey that iam eager to learn alot from.with eyes wide open!,nanps my sister loves nyc i havent been there in about 15 yearswe plan on taking my mom there for her 75th in 2005.love & peace.

[Guest guest]

Everyone makes their own choices in life. Just to let you know, I made what I considered to be an informed choice to do all 48 weeks of the Peg Combo. My decision was based on the fact that I was extremely ill 90% of every 24 hrs. I was at the point that I really decided, and friends who were around me saw that I PROBABLY COULD NOT FEEL ANY WORSE W/TX. AS Well, I have now 7 1/2 year old twin sons to consider. I did my last shot, #49, November 11, 2002. I was taken off the Rebetol about 1 month early, as I could not produce red blood cells on my own..Hence, many Procrit shots that took a long time to stimulate my Bone Marrow to Produce Red Blood Cells. How do I feel almost One year Later. 10000000% times worse, and now I have Rheumatoid Arthritis as well.(MY IMMUNE SYSTEM BEING COMPROMISED For so long) One month after tx, it came up a little, AND HERE Come The Autoimmune Disorders. I have permanent health and some psychiatric issues too boring to discuss. I feel like I live at s Hopkins Hospital. Quality of life sucks. My system was SO TOXIC, but I kept going. Guess What? I WISH I HAD NEVER DONE THE TX. Pls consider and really research,

Peace, Love, and Empathy, Debbie

>From: forprofet@...

>Reply-

>

>Subject: Re: [ ] Results

>Date: Sun, 7 Sep 2003 15:44:52 EDT

>

>mike

>thank you for your answer and reply.

>to be honest with you i have discomfort 90% of the day and the ill feelings

>come and go...i have been told that i have to go the 48 week treatment. i am

>ready to get this over with already! just slay the dragon, and be done.

>I must say that this is the beginning of a journey that iam eager to learn

>alot from.with eyes wide open!,

>nan

>ps my sister loves nyc i havent been there in about 15 years

>we plan on taking my mom there for her 75th in 2005.

>love & peace.

Fast, faster, fastest: Upgrade to Cable or DSL today!

[Guest guest]

Debra - I am so sorry for your situation, but I thank you for

sharing. You and people like you are the ones we need to tell their

stories so that others will think long and hard about their decisions

regarding treatment. Even those who who attain svr don't know what

damage may have been done to their bodies that will come up in later

years.

I am so grateful that my gut told me not to go with treatment, and I

have never for a moment doubted my decision.

Are you using any supplements or herbs? What is the state of your

liver? There are so many wonderful alternatives available to help

you. If you would like to discourse further, please email me.

Love & Blessings, Karolyn

>

[Guest guest]

In a message dated 9/9/2003 6:54:53 PM Eastern Daylight Time, taylormed@... writes:

Everyone makes their own choices in life. Just to let you know, I made what I considered to be an informed choice to do all 48 weeks of the Peg Combo. My decision was based on the fact that I was extremely ill 90% of every 24 hrs. I was at the point that I really decided, and friends who were around me saw that I PROBABLY COULD NOT FEEL ANY WORSE W/TX. AS Well, I have now 7 1/2 year old twin sons to consider. I did my last shot, #49, November 11, 2002. I was taken off the Rebetol about 1 month early, as I could not produce red blood cells on my own..Hence, many Procrit shots that took a long time to stimulate my Bone Marrow to Produce Red Blood Cells. How do I feel almost One year Later. 10000000% times worse, and now I have Rheumatoid Arthritis as well.(MY IMMUNE SYSTEM BEING COMPROMISED For so long) One month after tx, it came up a little, AND HERE Come The Autoimmune Disorders. I have permanent health and some psychiatric issues too boring to discuss. I feel like I live at s Hopkins Hospital. Quality of life sucks. My system was SO TOXIC, but I kept going. Guess What? I WISH I HAD NEVER DONE THE TX. Pls consider and really research,

Peace, Love, and Empathy, Debbie

Debbie,

I am so very sorry you feel like this as I am on treatment too and will be done end of Oct. Have you been cured from the virus?

I have 11 and 12 yr old girls and my mood is wearing on them...

Keep you chin up and hang in there.....

Cosy

[Guest guest]

I echo Karolyn's statements. We can live with hepatitis in our bodies and have a relatively good quality of life (mine is great, by the way), by leading a very clean lifestyle and taking natural supplements, herbs, etc. We'll probably die of something totally irrelated to hep c...It is a different story, however, when a side effect occurs (from tx) which is permanent. This can happen with anyone on treatment, and it's a crap shoot to who gets them and how severe they are. I'm not into playing Russian Roulette with my body. I thank the Goddess every day that I had the strength to resists all my doctor's demands I get tx treatment. I feel great today on my natural protocol, (the docs are amazed at my progress towards the total restoration of my health and have shut up), and I even plan on kicking the disgusting bug out any day now...it's all in the works---and anyone who cares to doubt me strengthens my resolve even more. So you couple of troublemakers out there (you know who you are), go for it! Blessings all, Satya

[ ] Re: Results

Debra - I am so sorry for your situation, but I thank you for sharing. You and people like you are the ones we need to tell their stories so that others will think long and hard about their decisions regarding treatment. Even those who who attain svr don't know what damage may have been done to their bodies that will come up in later years. I am so grateful that my gut told me not to go with treatment, and I have never for a moment doubted my decision. Are you using any supplements or herbs? What is the state of your liver? There are so many wonderful alternatives available to help you. If you would like to discourse further, please email me. Love & Blessings, Karolyn>

[Guest guest]

Dear Debra, I'm so sorry you had to go thru that. Thanks for sharing your story. It may steer others away from a treatment that is pure poison. Literally. I wish you the best from here on. Maybe it's time to try something natural to possibly reverse the damage. I would speak to Dr. Zhang--he can be reached at www.dr-zhang.com, and you can call and get his help FREE--his phone number and office hours are listed on the site. He has formulas that could possibly reduce your suffering---be well, and blessings, Satya

Re: [ ] Results

>Date: Sun, 7 Sep 2003 15:44:52 EDT

>

>mike

>thank you for your answer and reply.

>to be honest with you i have discomfort 90% of the day and the ill feelings

>come and go...i have been told that i have to go the 48 week treatment. i am

>ready to get this over with already! just slay the dragon, and be done.

>I must say that this is the beginning of a journey that iam eager to learn

>alot from.with eyes wide open!,

>nan

>ps my sister loves nyc i havent been there in about 15 years

>we plan on taking my mom there for her 75th in 2005.

>love & peace.

Fast, faster, fastest: Upgrade to Cable or DSL today!

[Guest guest]

To Satya and Karolyn, BRAVO!!! to both you wonderful people. You

have offered so much information and hope and help in so many

different ways. And have done it with love for your fellow man/woman.

The positive thoughts and encouraging

words are so helpful and up-lifting to

people suffering with any illness. The "proof is in the pudding", and

you are perfect examples of that.

Free will is a wonderful thing,

try it, or don't try it...it is entirely up to you. Sharing is what this list is all

about. Thank you for being there for us. May blessings befall all of you.

Positively, Margie.

[ ] Re: Results

Debra - I am so sorry for your situation, but I thank you for sharing. You and people like you are the ones we need to tell their stories so that others will think long and hard about their decisions regarding treatment. Even those who who attain svr don't know what damage may have been done to their bodies that will come up in later years. I am so grateful that my gut told me not to go with treatment, and I have never for a moment doubted my decision. Are you using any supplements or herbs? What is the state of your liver? There are so many wonderful alternatives available to help you. If you would like to discourse further, please email me. Love & Blessings, Karolyn>

[Guest guest]

It is not my concern what anecdotal evidence you continue to present

on this site. Those who are seeking answers for the care and

treatment of the Hepatitis C virus may, if they so desire, follow the

protocols you have outlined. These protocols are not based on any

form of science and those who profit from them are generally frauds

that use degrees that were purchased at a degree mill.

To constantly brand those who would differ with your utopian vision

of a hepatitis c cure, as troublemakers is beyond comment. There are

many who have used supplements similar to the ones you are presently

using and they in fact did nothing to slow the progress of the

disease. They may in fact have contributed to its progress.

Thousands of people have used interferon and ribavirin treatments

successfully and some have not been successful. These are drugs that

are not to used in a fashion similar to aspirin, then again, HCV is

not a headache or cold. It can and does kill.

As it stands at this moment the only effective, peer reviewed

treatment for the Hepatitis C virus available in North America at

this time is either Pegetron or Pegasys combination therapies. There

are thousands of herbal diet supplements that can be purchased via

the web or on the street, but none has ever shown to be in the least

effective in the control of the Hepatitis C virus. I would venture

that they may give a person a feeling of some control over the virus,

but only in a " placebo effect " .

Reality is that a large majority of health care consumers will visit

their western educated and certified docs, for the care, management

and treatment of their HCV. Being an educated health care consumer

will of course assist them to understand the procedures and treatment

options.

When the alternative medicine practitioners actually use scientific

peer reviewed studies of their treatments and cures, then I suspect

others and I will look at their findings. The problem is that most

medical reviews will not accept treatments that come from docs who

bought their degrees off the internet, as they look down on them for

what their really are, snake oil salespersons.

> >

>

>

>

[Guest guest]

To deny the value of Dr-Zhang's work and results with HepC is to

bury one's head in the sand. I chose to think you did not mean him

when you wrote about " frauds " , it would make you a very " ignorant "

person. Making the informed choice, after much research, of taking

his protocol instead of the " treatment " is everybody's right. His

protocol does not work for everyone, but neither does the

treatment. People feel better on his protocol, can't say that for

the " treatment " ... Respect for other people's choices is the key

here. We all have to reach deep inside to make such an important

decision and once we make it, we don't need this kind of talk.

Blessings!

> > >

> >

> >

> >