Results are in

[Guest guest]

How is your iron? Being cold is a sign of anemia.

janine

> I need help with understanding the test results. My doctor

explained

> it to me, but I still need some clear up on it. He said the test

> results were in normal range and that I am not hyo or hyer. I said

> then why am I still cold all the time even in 80 degree weather if

> there is a breeze I get cold. He doesn't have the answer to that.

My

> T3 is 37.4(Lab goes by 32.0- 48.2.. My T4 is 8.3 (Lab goes by 6.1-

> 12.2)My TSH is 2.27 (Lab goes by 0.34-5.6)

>

> Thanks

> Robin

[Guest guest]

Hi Janine,

No my iron is fine. I have been cold most of my life. I told the

doctor the other day Iam tired of being cold most of the time. His

answer was he was cold even with his jacket on. I thought to myself

maybe you are hypo too. It seem like every test he runs on me it

comes back " normal. " Or what ever normal is to them.

Robin

> > I need help with understanding the test results. My doctor

> explained

> > it to me, but I still need some clear up on it. He said the test

> > results were in normal range and that I am not hyo or hyer. I

said

> > then why am I still cold all the time even in 80 degree weather

if

> > there is a breeze I get cold. He doesn't have the answer to

that.

> My

> > T3 is 37.4(Lab goes by 32.0- 48.2.. My T4 is 8.3 (Lab goes by

6.1-

> > 12.2)My TSH is 2.27 (Lab goes by 0.34-5.6)

> >

> > Thanks

> > Robin

[Guest guest]

I never

heard of anybody paying for being in a study. That was one of the things people

without insurance often looked for because the treatment was free, as it should

be. I don’t know if double dose will mean double side effects or not. Obviously

they have reason to believe that it may increase your odds of clearing the

virus, so that is some motivation. I went through the 3x wkly injections for 48

weeks and did clear the virus, or I am still undetectable at any rate,

considered a long-term responder, no guarantees… I had serious problems with my

energy level, so with 3 young ones that is also a consideration. I assume it is

a blind or double blind study where you won’t know if you are getting the

regular dose or the double dose? I understand that in a blind study, the

patient doesn’t know whether they are getting one option or the other, in a

double blind the doctor or the patient don’t know. I’m not sure how they would

pull that off. What I’m getting at is if you try it, you could always drop if

the sides were too great, but if it was me I’m thinking I might have said, ok,

I can’t take the double dose, put me on the single, and then find out I was

only on the single! Will you also be taking ribavarin? Good luck whatever you

decide. I was pretty much a couch veggie on the regular dosage. -dz-

-----Original

Message-----

From: Tammie

[mailto:beachbrat5@...]

Sent: Tuesday, September 16, 2003

8:33 AM

To:

Subject: [ ]

results are in

Good morning everyone. I have not posted fo awhile,but have been

reading yours daily.

Yesterday I FINALLY got the actual results from the horses mouth.I am

stage 3. However,since I am diabetic and it is not 100% under

control,I have to fix that before we can start the treatments.I also

started Effexor to get a jump start on that little problem.I am

looking forward to working hard to kick the dragon's butt.

The docs at Tulane in New Orleans asked if I would like to

participate in a study.Have any of you ever done that?This is the

deal:I would either receive the normal dose of peg-intron or a double

dose of it.Because(they say),types 2 and 3 respond and clear 90% of

the time with regular doses,they are trying to find ways to help type

1 to be able to clear with a greater than 50%rate.One idea of theirs

is to double the standard dose.I have mixed feelings about all of it

still.Of course if it worked it would be great and someone has to be

human guinea pig.It's all the side effects that are freaking me

out.I'm afraid if I got the double dose,I may just be a couch

veggie.My boys are 9,7,and 3.I need to be there for them,but at the

same time I am eager to get rid of this so I can keep my own liver

and live long and healthy for my guys.

The only possible benefit of being in this study,as opposed to

regular treatment,is getting that double dose and it works.My

insurance and I would still have to purchase the total cost of the

meds.You'd think I'd at least get a small break on something.Not even

the visits which are required every 2 weeks.Even if it makes me so

extra sick that I require other medical attention,I still foot the

total bill.

On the other hand is the me who believes that research needs to be

done to help others in the future.So,why not me.I don't know yet what

to do!!!!I have already donated my body to a medical school(hey,maybe

they're trying to kill me off early---haha)

Anyway, enough about me.About the stomach shots---I used insulin and

my best injection site was that area.Just pinch an inch(or 3)if ya

got it,and away you go.It seemed alot less sensitive.

Best of luck to everyone and prayers.

Peace and Joy from Extreme South Louisiana,TAM

[Guest guest]

After some serious thought I have decided to not participate in their

study.My husband and I re-read the 8 pages of information.It clearly

states that my insurance and I will bear all financial

responsibility,including if it causes other problems.As much as I

belive in the research they are doing and would like to help,all the

stipulations in the contract are a bit much for me to swallow.

- In , " Zierhart "

<dhz920@s...> wrote:

> I never heard of anybody paying for being in a study. That was one

of the

> things people without insurance often looked for because the

treatment was

> free, as it should be. I don't know if double dose will mean double

side

> effects or not. Obviously they have reason to believe that it may

increase

> your odds of clearing the virus, so that is some motivation. I went

through

> the 3x wkly injections for 48 weeks and did clear the virus, or I

am still

> undetectable at any rate, considered a long-term responder, no

guarantees… I

> had serious problems with my energy level, so with 3 young ones

that is also

> a consideration. I assume it is a blind or double blind study where

you won'

> t know if you are getting the regular dose or the double dose? I

understand

> that in a blind study, the patient doesn't know whether they are

getting one

> option or the other, in a double blind the doctor or the patient

don't know.

> I'm not sure how they would pull that off. What I'm getting at is

if you try

> it, you could always drop if the sides were too great, but if it

was me I'm

> thinking I might have said, ok, I can't take the double dose, put

me on the

> single, and then find out I was only on the single! Will you also

be taking

> ribavarin? Good luck whatever you decide. I was pretty much a couch

veggie

> on the regular dosage. -dz-

>

> [ ] results are in

>

> Good morning everyone. I have not posted fo awhile,but have been

> reading yours daily.

> Yesterday I FINALLY got the actual results from the horses mouth.I

am

> stage 3. However,since I am diabetic and it is not 100% under

> control,I have to fix that before we can start the treatments.I also

> started Effexor to get a jump start on that little problem.I am

> looking forward to working hard to kick the dragon's butt.

> The docs at Tulane in New Orleans asked if I would like to

> participate in a study.Have any of you ever done that?This is the

> deal:I would either receive the normal dose of peg-intron or a

double

> dose of it.Because(they say),types 2 and 3 respond and clear 90% of

> the time with regular doses,they are trying to find ways to help

type

> 1 to be able to clear with a greater than 50%rate.One idea of theirs

> is to double the standard dose.I have mixed feelings about all of it

> still.Of course if it worked it would be great and someone has to be

> human guinea pig.It's all the side effects that are freaking me

> out.I'm afraid if I got the double dose,I may just be a couch

> veggie.My boys are 9,7,and 3.I need to be there for them,but at the

> same time I am eager to get rid of this so I can keep my own liver

> and live long and healthy for my guys.

> The only possible benefit of being in this study,as opposed to

> regular treatment,is getting that double dose and it works.My

> insurance and I would still have to purchase the total cost of the

> meds.You'd think I'd at least get a small break on something.Not

even

> the visits which are required every 2 weeks.Even if it makes me so

> extra sick that I require other medical attention,I still foot the

> total bill.

> On the other hand is the me who believes that research needs to be

> done to help others in the future.So,why not me.I don't know yet

what

> to do!!!!I have already donated my body to a medical school

(hey,maybe

> they're trying to kill me off early---haha)

> Anyway, enough about me.About the stomach shots---I used insulin and

> my best injection site was that area.Just pinch an inch(or 3)if ya

> got it,and away you go.It seemed alot less sensitive.

> Best of luck to everyone and prayers.

> Peace and Joy from Extreme South Louisiana,TAM

>

>

>

>

>

[Guest guest]

Hello, tammie. Whatever you decide to do, i wish you success. I certainly

can't imagine my husband on double doses of peg-intron! In fact, he started with

a dose of .5 and then they reduced it to .25 and now it's down to .20 but not

everyone has the same side effects. but, not everyone has three young boys to

chase after. Don't bite off more than you can chew, especially since you are

diabetic. Good luck in whatever you decide to do.

Sue and Gidget

[Guest guest]

Hi, sharon. i agree with you and I hope tammie doesn't take on more than her

body and emotions can handle. Having three young ones is hard in itself. i am so

glad ours are grown!

Greg is a type 1a and yet has been undetectable since his second month and I

sure hope it continues that way after he's done.

Gidget turns four this Friday and Greg has that day off. Maybe we will have an

ice cream cake for her. She, of course, gets no people food, but we can tell her

how good it was, smile.

Take care.

Sue and Gidget

[Guest guest]

Hi Sue,

Thanks for the well wishes.I hope the same for your family.

As you have probably read,I won't be in that study.As soon as I get

this diabetes under better control,I'll begin the treatments.I am

starting with 1.5 PEG interferon once a week and 13mg + 2mg daily of

ribavirin for 48 weeks.It even SOUNDS nauseating.But,I am ready to

go.I need to get past this so I can enjoy my boys growing up and stay

a productive parent.PEACE TO YOU ALL<TAM

P.S. I am assuming Gidget is a cat??????

> Hello, tammie. Whatever you decide to do, i wish you success. I

certainly can't imagine my husband on double doses of peg-intron! In

fact, he started with a dose of .5 and then they reduced it to .25

and now it's down to .20 but not everyone has the same side effects.

but, not everyone has three young boys to chase after. Don't bite off

more than you can chew, especially since you are diabetic. Good luck

in whatever you decide to do.

> Sue and Gidget

[Guest guest]

Hi, tammie. greg takes eight hundred miligrams of ribavirin. he was up to 1200

but couldn't handle it.

gidget is my female yellow lab guide dog. she loves, cats, though; lol.

write any time.

Sue and Gidget

angelsusanne@...

[Guest guest]

I just got the Igenex results for my 2 kids. We have an appt for my 6yo with a

LLMD and myself this Saturday, but just found out he will not see my 3yo, as he

does not see kids that young. I don't really understand the Igenex results, so

am looking to see if anyone can make sense of this.

My first question is, Does anyone have experience with a good doctor who treats

kids? I already put in a call to Dr , but am anticipating a long wait to

see him, I live in land and would ideally like to find someone closer by.

The doctor we are seeing this weekend is in New Jersey, and we are traveling

that far because he could give us the soonest appt, and he came personally

recommended. 3 others that came recommended in the Baltimore area are not taking

new patients. I know I can get a list off of the internet, but would rather go

by people's experiences than picking out of a hat.

For my daughter's results, it looks like she tested negative for co-infections.

Her western Blot IGM is postive, with 31kDa ++, 34kDa +, 41kDa IND. IGG says

negative but 41kDa ++, and there are 3 bands that say IND.

For my son, Western Blot IgM says negative, but 18kDa +, 41kDa ++, 83-93kDa IND.

IgG says negative, but 41kDa is +++ and three others are IND. His IgG for HME

is highat 1:320 titer.

SO, what I gather is that if there is only one band positive, the test result is

considered negative, but there is still evidence of lyme present that needs to

be treated. Is this right?

If anyone can help me make sense of this, I would appreciate it! It is hard to

wait til Saturday to understand it all.

Thanks, Dara

[Guest guest]

In land, you are not far from Washington DC. I think Ginger

Savely treats patients from there, and I believe she will treat both

your children. But to know for sure you have to call her. She is

great and has been doing this for a long time. Battled Lymes herself,

she is very compassionate and very much on top of the latest

treatments. She works closely with many other Lyme specialists around

the country including Dr. . Her office can also explain the

test results to you.

Your son " might " have what they call an equivocal result. In which

case there is controversy as how to perceive that test result. Some

think that it is as good as positive where others think it should be

taken somewhat negative. Or that you have been exposed to Lymes but

that it is not active in the system anymore. My son was equivocal and

I treated him anyway which resulted in an array of active symptomatic

flare ups at three weeks into his treatment and with continued

treatment throughout the year those symptoms subsided. Theory being

that we activated dormant spirochetes with the treatment and then the

treatment kills the bacteria. Dormant spirochetes will no cell wall

have to become active in order for the cephlasporine antibiotics can

kill the bacteria with a cell wall.

This is her info in San Francisco but I remember reading that she was

treating patients in DC also:

> Ginger Savely, FNP, DNP/ Casey, RN / Tipp Vatana, Office Manager

> TBD Medical Associates

> 450 Sutter Street Suite 1504

> San Francisco, CA 94108

> Phone: 415-399-1035

> Fax: 415-399-1057

Good luck,

Suzanne

On Sep 22, 2009, at 10:38 AM, darabeth2003 wrote:

> I just got the Igenex results for my 2 kids. We have an appt for my

> 6yo with a LLMD and myself this Saturday, but just found out he will

> not see my 3yo, as he does not see kids that young. I don't really

> understand the Igenex results, so am looking to see if anyone can

> make sense of this.

> My first question is, Does anyone have experience with a good doctor

> who treats kids? I already put in a call to Dr , but am

> anticipating a long wait to see him, I live in land and would

> ideally like to find someone closer by. The doctor we are seeing

> this weekend is in New Jersey, and we are traveling that far because

> he could give us the soonest appt, and he came personally

> recommended. 3 others that came recommended in the Baltimore area

> are not taking new patients. I know I can get a list off of the

> internet, but would rather go by people's experiences than picking

> out of a hat.

>

> For my daughter's results, it looks like she tested negative for co-

> infections. Her western Blot IGM is postive, with 31kDa ++, 34kDa +,

> 41kDa IND. IGG says negative but 41kDa ++, and there are 3 bands

> that say IND.

>

> For my son, Western Blot IgM says negative, but 18kDa +, 41kDa ++,

> 83-93kDa IND. IgG says negative, but 41kDa is +++ and three others

> are IND. His IgG for HME is highat 1:320 titer.

>

> SO, what I gather is that if there is only one band positive, the

> test result is considered negative, but there is still evidence of

> lyme present that needs to be treated. Is this right?

>

> If anyone can help me make sense of this, I would appreciate it! It

> is hard to wait til Saturday to understand it all.

>

> Thanks, Dara

>

>

>