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Thanks for the advice. I think I will just talk to Kathy at the conference

about it. I just thought I would see if anyone had seen this one before.

Take care

Amy

Re: New Doctor

>Amy,

>

>I can email Tess, the person I am sharing a room with at the conference.

She

>sees Weiler also...Have you tried kathy Antilla with the IDF in MPLS????

she

>knows most physicians and may be a resource.

>

>

>

>Quoting Amy Junes <ajunes@...>:

>

>>

>>

>>

>>

>> Hi Everyone

>>

>> Our son usually sees DR Weiler at the Mayo Clinic but she is on leave for

a

>>

>> indefinite amount of time. I am unsure why. Anyway they are having

>>

>> see DR. Boyce in her place. He will also assess Gavin for PIDD. Has

>>

>> anyone seen or heard anything about him? My pediatrician is thrilled

>>

>> because they were in residency together. He says he is brilliant. I just

>>

>> love DR. Weiler and am anxious about a new Doctor.

>>

>> Take care

>>

>> Amy J

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> This forum is open to parents and caregivers of children diagnosed with a

>> Primary Immune Deficiency. Opinions or medical advice stated here are the

>> sole responsibility of the poster and should not be taken as professional

>> advice.

>>

>>

>>

>> To unsubscribe -unsubscribegroups (DOT)

>>

>> To search group archives go to:

>> /messages

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

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Guest guest

Thanks for the advice. I think I will just talk to Kathy at the conference

about it. I just thought I would see if anyone had seen this one before.

Take care

Amy

Re: New Doctor

>Amy,

>

>I can email Tess, the person I am sharing a room with at the conference.

She

>sees Weiler also...Have you tried kathy Antilla with the IDF in MPLS????

she

>knows most physicians and may be a resource.

>

>

>

>Quoting Amy Junes <ajunes@...>:

>

>>

>>

>>

>>

>> Hi Everyone

>>

>> Our son usually sees DR Weiler at the Mayo Clinic but she is on leave for

a

>>

>> indefinite amount of time. I am unsure why. Anyway they are having

>>

>> see DR. Boyce in her place. He will also assess Gavin for PIDD. Has

>>

>> anyone seen or heard anything about him? My pediatrician is thrilled

>>

>> because they were in residency together. He says he is brilliant. I just

>>

>> love DR. Weiler and am anxious about a new Doctor.

>>

>> Take care

>>

>> Amy J

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>> This forum is open to parents and caregivers of children diagnosed with a

>> Primary Immune Deficiency. Opinions or medical advice stated here are the

>> sole responsibility of the poster and should not be taken as professional

>> advice.

>>

>>

>>

>> To unsubscribe -unsubscribegroups (DOT)

>>

>> To search group archives go to:

>> /messages

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

>>

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  • 3 weeks later...
Guest guest

Good luck. Let us know what labs he orders and what he recommends.

Remember if he's not comfortable doing the workup on Cheyann ask for a

referral to an immunologist. Hope things go well.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

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Guest guest

Thats a good idea because I heard from alot of people that who she needs to see

is a immunologist but usually they are sent to a IFD Specialist first.

Thank you and I will keep everyone updated,

Tia Mommy of Cheyann ( Age 14 months - Diagnosis still undertermined)

Good luck. Let us know what labs he orders and what he recommends.

Remember if he's not comfortable doing the workup on Cheyann ask for a

referral to an immunologist. Hope things go well.

Ursula Holleman

mom to (12 yrs old) and Macey (10 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

Trust until given a reason not to.

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

Sports

Rekindle the Rivalries. Sign up for Fantasy Football

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  • 1 year later...

Some of the doctors I know from college who have lots of academic

credentials possess few, if any clinical ones. They don't have the

real-world experience. It's like asking a car designer to rebuild your

engine. Designers won't know how - they'll just try to replace the

entire car.

Dave

On Oct 6, 2006, at 8:20 AM, pagirl1946 wrote:

> I saw a new endo yesterday and had high expectations since I checked

> the VA med board web site. I found that she had done a fellowship at

> UVA and had previously practiced in Bethesda but don't know if it was

> NIH. What a joke, she was the worst one yet and I don't plan to go

> back. I told her all my complaints. Her answer to the sweating was

> menopause; about the redness, pain & heat in my feet, she told me

> that it was normal for your feet to be red after standing on them.

> She said to look at my husband's feet and I told her I wasn't

> married. She would have known that if she had looked at the form I

> had just filled out. I took all of my previous test results with

> me. She looked at them and said that my aldosterone is normal

> because when they gave me saline, my aldo went down to 5 like it

> should have. She didn't seem to care that before the test aldo was

> 20, renin .9. The only test she wanted to do was my estrogen level

> and I said no. Her rationale was that once she found out my estrogen

> level, she would know what to give me to stop the sweating. I told

> her about that drugs make my feet hurt much worse and I won't take

> them. I assume she wanted to put me on an anti-depressant because

> that is what other doctors tried. I took one zoloft tab and about an

> hour later a terrible burning sensation started in my hands and

> feet. It was terrible all day but better the next. It gradually got

> better each day and went away completely after about a week. She

> commented that my glucose level was elevated on my last test and I

> told her that I wasn't fasting. If she had looked at the time on

> the sheet, she might have guessed that. Then she asked who in my

> family had diabetes – probably a good guess to ask every patient that

> these days. I told her my mother had it. Later when she was still

> trying to convince me that my sweating was caused by menopause, I

> told her that my mother didn't even have hot flashes, she told me

> that my body was different from my mother's. Have you ever noticed

> that when a parent had something that they are trying to diagnose you

> with, that means there is a good chance you have it; but when a

> parent doesn't have it, then your body is different from theirs. She

> suggested that I go to NIH where they could diagnose me to find the

> cause of the neuropathy and possibly get me into a treatment trial.

> What that meant to me was that they would diagnose me with something,

> not necessarily, the correct diagnosis and put me in a drug trial.

> More on drug trials later. She suggested several things I could try

> for hot flashes. Black cohosh which I have already tried and it gave

> me terrible diarrhea. Red clover which I haven't tried and Evening

> primrose oil which I have also tried but didn't help. I should have

> known when I got an appointment with her right away. I called for

> the appointment last Wed and could have seen her of Thurs or Fri but

> I had other things to do. When I asked where they were located, the

> receptionist told me to look it up on the internet. I am done with

> endos unless something turns up and I go back to see Dr Carey at

> UVA. I want to have my ACTH level checked again since I read that it

> is higher early in the AM and it was tested at Hopkins at around noon

> and was high then. The dr I saw yesterday said that my ACTH isn't a

> problem since my cortisol is normal. I`ll ask my primary to run the

> tests.

>

> Fran

>

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Dear Bob

Got back from the new doctor he is a gastro, is that the best kind to go to or

is a liver guy better. He seem okay, but he just gave me some medicine for my

stomach. He has to check my records. But I thought you would be interested

that he said the new anti-viral treatment that there working on is showing

great promise, his only concern is that FDA would keep it off the market for a

long time.

I can't tell you how many years, I have told my doctor how tried I am.

Well when I got my report from my doctor, my blood test have come back for the

past five years that I anmenic and I have this other thing it small red blood

cell, they don't carry as much oxygen to your lungs. I am now going to get a

copy from every test I get, why would she just yes me to death instead of

letting me think I am a big lazy lump.

Kathleen

bob Larson <bobLists@...> wrote:

....i've read testimonials from people taking colloidal silver saying they

were surprised to find it got rid of both the toenail fungus (the kind that

builds up & gets orange & makes the nail misshapen) & gum disease they had

for years. that would be nice if it's true. cutting way back on sugar is

certainly good for both as well as HCV. i'm dying to find out (literally ha

ha ha!) if my toenails are going to clear over the next months. thinking

about attacking them a couple times a day with tea tree oil also to give a

bit more punch but then i won't know if the CS did it or the oil....but gone

is gone & that's a good thing.

> Rashes....

> >

> >

> > I have congentital lyme disease also varrious rhemitoid problems....i

> > was wondering with hep c do you get rashes as well??? i have

> > pictures....

> >

> > http://i25.photobucket.com/albums/c98/lilibeelee/DSC00235.jpg

> >

> > http://i25.photobucket.com/albums/c98/lilibeelee/DSC00233.jpg

> >

> > http://i25.photobucket.com/albums/c98/lilibeelee/DSC00198.jpg

> >

> >

> > http://i25.photobucket.com/albums/c98/lilibeelee/DSC00185.jpg

> >

> > http://i25.photobucket.com/albums/c98/lilibeelee/DSC00186.jpg

> >

> >

> >

> >

> >

> >

> >

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I just read your post and it reminded me of what a tough time we all

have with doctors. It's so hard to find someone smart and

interested in discovering the source of our/your discomfort. I'm so

sorry you had to go through that and hope you find a decent doctor

soon. What's your next idea of who to see? K

>

> I saw a new endo yesterday and had high expectations since I

checked

> the VA med board web site. I found that she had done a fellowship

at

> UVA and had previously practiced in Bethesda but don't know if it

was

> NIH. What a joke, she was the worst one yet and I don't plan to

go

> back. I told her all my complaints. Her answer to the sweating

was

> menopause; about the redness, pain & heat in my feet, she told me

> that it was normal for your feet to be red after standing on

them.

> She said to look at my husband's feet and I told her I wasn't

> married. She would have known that if she had looked at the form

I

> had just filled out. I took all of my previous test results with

> me. She looked at them and said that my aldosterone is normal

> because when they gave me saline, my aldo went down to 5 like it

> should have. She didn't seem to care that before the test aldo

was

> 20, renin .9. The only test she wanted to do was my estrogen

level

> and I said no. Her rationale was that once she found out my

estrogen

> level, she would know what to give me to stop the sweating. I

told

> her about that drugs make my feet hurt much worse and I won't take

> them. I assume she wanted to put me on an anti-depressant because

> that is what other doctors tried. I took one zoloft tab and about

an

> hour later a terrible burning sensation started in my hands and

> feet. It was terrible all day but better the next. It gradually

got

> better each day and went away completely after about a week. She

> commented that my glucose level was elevated on my last test and

I

> told her that I wasn't fasting. If she had looked at the time on

> the sheet, she might have guessed that. Then she asked who in my

> family had diabetes – probably a good guess to ask every patient

that

> these days. I told her my mother had it. Later when she was

still

> trying to convince me that my sweating was caused by menopause, I

> told her that my mother didn't even have hot flashes, she told me

> that my body was different from my mother's. Have you ever

noticed

> that when a parent had something that they are trying to diagnose

you

> with, that means there is a good chance you have it; but when a

> parent doesn't have it, then your body is different from theirs.

She

> suggested that I go to NIH where they could diagnose me to find

the

> cause of the neuropathy and possibly get me into a treatment

trial.

> What that meant to me was that they would diagnose me with

something,

> not necessarily, the correct diagnosis and put me in a drug

trial.

> More on drug trials later. She suggested several things I could

try

> for hot flashes. Black cohosh which I have already tried and it

gave

> me terrible diarrhea. Red clover which I haven't tried and

Evening

> primrose oil which I have also tried but didn't help. I should

have

> known when I got an appointment with her right away. I called for

> the appointment last Wed and could have seen her of Thurs or Fri

but

> I had other things to do. When I asked where they were located,

the

> receptionist told me to look it up on the internet. I am done

with

> endos unless something turns up and I go back to see Dr Carey at

> UVA. I want to have my ACTH level checked again since I read that

it

> is higher early in the AM and it was tested at Hopkins at around

noon

> and was high then. The dr I saw yesterday said that my ACTH isn't

a

> problem since my cortisol is normal. I`ll ask my primary to run

the

> tests.

>

> Fran

>

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In a message dated 10/17/06 1:00:34 AM, bou746@... writes:

What that meant to me was that they would diagnose me with

something,

> not necessarily, the correct diagnosis and put me in a drug

trial.

You do not get into drug trials at the NIH for something you do not have.

May your pressure be low!

C.E. Grim, B.S., M.S., M.D.

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

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  • 2 months later...

Linn,Fantastic news! What a huge blessing it is to have your daughter in safe and able hands. Please let us know how her tests turn out. I will be sending you lots of good energy.P.S. And let me know if your doc has a brother in south Florida LOL!Linn <linnmiller@...> wrote: My daughter had her appointment yesterday with the new doctor. __________________________________________________

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Wow, this guy sounds far above the normal doc. Congratulations. I take

it you are not in the U.S? I am interested in how the tests come out. Esp

the pollutant testing.

Amy

Linn wrote:

My daughter had her app. He's doing a urine porphyrin test through

a lab in

France and a urinary metabolic profile and environmental pollutant

biomonitor test that checks for xylene, toluene, benzene,

trimethylbenzene, styrene, phthalate and paraben exposure, it's

titled a organic acids and environmental pollutants test on my

paperwork. He'll be starting her on metabolic enzymes in addition to

the digestive enzymes that she's already on after he gets more info

from the initial testing. He

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Wow that is so great. Do you think he would mind being added to our list

of iodine friendly doctors?

Irene

At 08:31 AM 12/20/2006, you wrote:

My daughter had her appointment

yesterday with the new doctor. He's

not only familiar with iodine research and the iodine doctors, he

knows Abraham. He thinks Iodoral will be helpful for her and thinks

that she may be able to utilize iodine only eventually without having

to take thyroid meds. He was surprised and very pleased that I was

familiar with iodine.

We talked at length regarding her condition and will start out by

doing some testing first to see what we need to address. We'll be

using PH strips to test her salvia and urine routinely at first until

we get her levels to a good number and then will only need to check

occasionally. He's doing a urine porphyrin test through a lab in

France and a urinary metabolic profile and environmental pollutant

biomonitor test that checks for xylene, toluene, benzene,

trimethylbenzene, styrene, phthalate and paraben exposure, it's

titled a organic acids and environmental pollutants test on my

paperwork. He'll be starting her on metabolic enzymes in addition to

the digestive enzymes that she's already on after he gets more info

from the initial testing. He thinks that it's early enough in the

Hashi's diagnosis to reverse. He's putting me in contact with

someone for advice and guidance on the gluten free diet and in

addition wants her to do a casein free diet for 90 days also (the

relationship here is casein to the development of Type 1 diabetes,

also her asthma history), after which he recommends putting her on

raw milk. He is well versed in how diet affects Type 1's and the

health issues later in life.

We also discussed far infrared therapy which he thinks would be quite

useful for her in treating her conditions. There have been a couple

of occasions where she has had a fever since being diagnosed with

Type 1 in which her insulin requirements have been greatly reduced.

He said that this might be that her body is still able to produce

some insulin on it's own, so we'll be doing a C-peptide test (I think

I'm remembering the name correctly) to check for that. Her insulin

needs are still not what most diabetics her weight and age use, so

we're interested in seeing if there may still be a window for some

recovery here. Neither one of is truly optimistic in this regard but

think it is worth investigating. I only wish I had known to pursue

this avenue when she was first diagnosed with Type 1.

I cannot put into words how relieved I am to find this doctor. I

feel that my daughter is in safe hands now and I can't thank those of

you, that have contributed here, enough for the information I have

found. I know that sometimes the OT subjects are tiresome but some

of that information has been vitally important to us.

The concern that this doctor had for my daughter was evident

immediately and I feel so fortunate to have found my way to him. I

had the best night of sleep last night since she was diagnosed a

couple of years ago.

Linn

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Amy,We are in Texas, right outside of Houston.  I'm very interested to see what we find out.LinnOn Dec 20, 2006, at 4:02 PM, Apricot85 wrote:Wow, this guy sounds far above the normal doc.  Congratulations.  I take it you are not in the U.S?   I am interested in how the tests come out.  Esp the pollutant testing. AmyLinn wrote:My daughter had her app. He's doing a urine porphyrin test through a lab in France and a urinary metabolic profile and environmental pollutant biomonitor test that checks for xylene, toluene, benzene, trimethylbenzene, styrene, phthalate and paraben exposure, it's titled a organic acids and environmental pollutants test on my paperwork. He'll be starting her on metabolic enzymes in addition to the digestive enzymes that she's already on after he gets more info from the initial testing. He . 

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Irene,Not sure, I'll ask him.LinnOn Dec 20, 2006, at 7:02 PM, Irene.M@... wrote:Wow that is so great. Do you think he would mind being added to our list of iodine friendly doctors?Irene. 

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Is this an endo???

You & she are definitely in good hands now!

What a wonderful Christmas present!

Warmly,

>

> My daughter had her appointment yesterday with the new doctor. He's

> not only familiar with iodine research and the iodine doctors, he

> knows Abraham. He thinks Iodoral will be helpful for her and thinks

> that she may be able to utilize iodine only eventually without having

> to take thyroid meds. He was surprised and very pleased that I was

> familiar with iodine.

>

> We talked at length regarding her condition and will start out by

> doing some testing first to see what we need to address. We'll be

> using PH strips to test her salvia and urine routinely at first until

> we get her levels to a good number and then will only need to check

> occasionally. He's doing a urine porphyrin test through a lab in

> France and a urinary metabolic profile and environmental pollutant

> biomonitor test that checks for xylene, toluene, benzene,

> trimethylbenzene, styrene, phthalate and paraben exposure, it's

> titled a organic acids and environmental pollutants test on my

> paperwork. He'll be starting her on metabolic enzymes in addition to

> the digestive enzymes that she's already on after he gets more info

> from the initial testing. He thinks that it's early enough in the

> Hashi's diagnosis to reverse. He's putting me in contact with

> someone for advice and guidance on the gluten free diet and in

> addition wants her to do a casein free diet for 90 days also (the

> relationship here is casein to the development of Type 1 diabetes,

> also her asthma history), after which he recommends putting her on

> raw milk. He is well versed in how diet affects Type 1's and the

> health issues later in life.

>

> We also discussed far infrared therapy which he thinks would be quite

> useful for her in treating her conditions. There have been a couple

> of occasions where she has had a fever since being diagnosed with

> Type 1 in which her insulin requirements have been greatly reduced.

> He said that this might be that her body is still able to produce

> some insulin on it's own, so we'll be doing a C-peptide test (I think

> I'm remembering the name correctly) to check for that. Her insulin

> needs are still not what most diabetics her weight and age use, so

> we're interested in seeing if there may still be a window for some

> recovery here. Neither one of is truly optimistic in this regard but

> think it is worth investigating. I only wish I had known to pursue

> this avenue when she was first diagnosed with Type 1.

>

> I cannot put into words how relieved I am to find this doctor. I

> feel that my daughter is in safe hands now and I can't thank those of

> you, that have contributed here, enough for the information I have

> found. I know that sometimes the OT subjects are tiresome but some

> of that information has been vitally important to us.

>

> The concern that this doctor had for my daughter was evident

> immediately and I feel so fortunate to have found my way to him. I

> had the best night of sleep last night since she was diagnosed a

> couple of years ago.

>

> Linn

>

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  • 9 months later...

I

think if your doctor recommends tx, the state should go along with it. Even

with private insurance though, I had to get pre-certification. The doctor

sends a request to the insurance company and they approve it, then my script

had to go to a special mail order pharmacy for the insurance company and they

shipped my meds every month. It was a little time consuming and I got pissed

off waiting at the time, but looking back it wasn’t that big a deal.

new doctor

My new doctor wants to

start treatment immediately. My next appt. is

Tues. morning. The nurse told me we have to get some kind of clearance

with the insurance. I have medical assistance thru the state of

land. I wonder if they will approve my treatment. As I am stage

one,there was nothing on my biospy. Does anyone know anything about

getting approval for treatment. Is there a chance they will deny me?

Does the FDA recommend treatment for all when diagnosed or is this

just something I heard thats not true.

Thnk you

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  • 8 months later...
Guest guest

Just have Dr. Gervais sent an e-mail to -subscribe

And state who he is and that he is a new

doc on the block

From:

[mailto: ] On Behalf Of Keim

Sent: Friday, May 23, 2008 12:15

PM

'Oregon DC's'

Subject: New

Doctor

Dear List serve Monitor,

I would like to recommend a new doctor to the list serve.

Gervais is a recent Logan Graduate and has just moved to the Eugene area to begin

practicing. I had the pleasure of working with when he interned for

six weeks in my clinic. He is going to be a great asset to Eugene and

chiropractic. His e-mail is briandgervais .

Keim DC

and Keim Chiropractic

59 Santa Clara Ave.

Eugene Oregon, 97404

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  • 2 years later...

Hi all, Thankyou for all your input on our experience with the last doctor. I

did some searching and found another one, we saw her yesterday. It was a good

experience, she answered all my questions without me asking. She felt it was

very important to get the facts on all the treament options available {big

difference from the last guy} and made an appointment for us with a specialist

involved in trials at the Lahey clinic. It WAS a completely different experience

from the first. The first guy left me with a feeling of doom, this doctor left

me with a positive feeling. You all are so right about looking until you find

the right one. Now I have to understand trials, I searched the doctors name and

he is doing trials with boceprevir, not sure if I spelled that right. He is also

doing research on drugs for anemia. Just wanted to let you know that's where we

are at now. The appointment with the Doctor at Layhey is April 1. the doctor who

set this up is also involved with hep c and is very aware of what is happening

in the field.

diane

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Diane,The difference in the doctors sounds like night and day.  It's amazing when you find someone that is on their game when it comes to hep c.  Sounds like you are now in good hands.  Meeting with a doctor involved with clinical trials will give you even more insight.  This is all good stuff.  And then there is the possibility of also getting in on a clinical trial...  that can be very cost effective!  In a clinical trial your medications and your medical care surrounding the hep c is covered by the trial.  Basically you'd be getting well over 10G in medications a month at no cost to you or your insurance company plus all that medical.  The only problem with a clinical trial is you don't know if you are getting the new medication or not.  You may not be.  Half the people get the new drug the other half get the placebo...  In either case you still get the normal amounts of Interferon and Ribavirin.  

Boceprevir and Telaprevir are two new drugs that are sitting at the FDA right now awaiting approval.  Merck submitted Boceprevir in November and Telaprevir was submitted 2 weeks later in December...  Both are protease inhibitors that work the same way, they are both taken differently though..  Clinical trials for these drugs should be winding down as approval is eminent...  they are targeted for a release in late May or early June.  This is a third drug that adds to the current standard of care.  It does claim to improve success rate of treatment and in some cases it can shorten the length of treatment from 48 weeks to 24 weeks.  

Sounds like you are in good hands...  Let us know what happens!Hugs,TeriOn Fri, Feb 18, 2011 at 4:57 PM, dianedellicarpini <dellcar9@...> wrote:

 

Hi all, Thankyou for all your input on our experience with the last doctor. I did some searching and found another one, we saw her yesterday. It was a good experience, she answered all my questions without me asking. She felt it was very important to get the facts on all the treament options available {big difference from the last guy} and made an appointment for us with a specialist involved in trials at the Lahey clinic. It WAS a completely different experience from the first. The first guy left me with a feeling of doom, this doctor left me with a positive feeling. You all are so right about looking until you find the right one. Now I have to understand trials, I searched the doctors name and he is doing trials with boceprevir, not sure if I spelled that right. He is also doing research on drugs for anemia. Just wanted to let you know that's where we are at now. The appointment with the Doctor at Layhey is April 1. the doctor who set this up is also involved with hep c and is very aware of what is happening in the field.

diane

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Good for you, Diane!!For all that are seeing this, we need to go back to our lesson sometimes. Let's face it, you may be dealing with you Dr. more often more than husband/wife. Well, I lucked in and took other people, not My Grumpy.I took an instance dislike to the surgeon that was going to be preforming my liver resection. So, I was trying to call our local Hep C nurses; plus, the one from the clinic where I was. Couldn't even get the Gastro - they were all in Toronto about *Hep Event. The two nurses were wonderful with me and after I finally realize I already had a top Dr - I don't need the bedside manner.Gloria

Hi all, Thankyou for all your input on our experience with the last doctor. I did some searching and found another one, we saw her yesterday. It was a good experience, she answered all my questions without me asking. She felt it was very important to get the facts on all the treament options available {big difference from the last guy} and made an appointment for us with a specialist involved in trials at the Lahey clinic. It WAS a completely different experience from the first. The first guy left me with a feeling of doom, this doctor left me with a positive feeling. You all are so right about looking until you find the right one. Now I have to understand trials, I searched the doctors name and he is doing trials with boceprevir, not sure if I spelled that right. He is also doing research on drugs for anemia. Just wanted to let you know that's where we are at now. The appointment with the Doctor at Layhey is April 1. the doctor who set this

up is also involved with hep c and is very aware of what is happening in the field.

diane

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  • 1 month later...
Guest guest

Hi all,

I went to an Integrative Medicine doctor yesterday with my zrt lab

results...

First thing he wanted me to do------ start IODINE!!!! yep, he said I

should be on it for my thyroid, but even more as a preventative for

breast, uterine, ovary cancers. My mom has had breast cancer 2x so

this was a thing I was studying on. He said to take 12.5 mg, but I

am already at 25 mg.

Also, due to my high anti-bodies to TPO, he is giving me Cytomel

(T3) in place of Synthroid (T4). Without the TPO enzyme, I cannot

convert the T4 into the active T3. No wonder I felt like I drag a 2

ton elephant around behind me all day long!!!

After I get a bit better on the T3, he will address my low

progesterone with OTC cream.

So anyways, one doctor for the Iodine protocol, albeit a bit on the

low dose side!!! :-)

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That’s wonderful you found a doctor educated in iodine ! Kathleen

Re: new doctor

Hi all,I went to an Integrative Medicine doctor yesterday with my zrt lab results...First thing he wanted me to do------ start IODINE!!!! yep, he said I should be on it for my thyroid, but even more as a preventative for breast, uterine, ovary cancers. My mom has had breast cancer 2x so this was a thing I was studying on. He said to take 12.5 mg, but I am already at 25 mg.Also, due to my high anti-bodies to TPO, he is giving me Cytomel (T3) in place of Synthroid (T4). Without the TPO enzyme, I cannot convert the T4 into the active T3. No wonder I felt like I drag a 2 ton elephant around behind me all day long!!!After I get a bit better on the T3, he will address my low progesterone with OTC cream.So anyways, one doctor for the Iodine protocol, albeit a bit on the low dose side!!! :-)

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Great news about finding a doc like this :-)

If they are not already on the Iodine Literate Doctors list @

www.breastcancerchoices.org, perhaps you might drop a note to them about your

experience and one more savvy Dr. will be added to the list!

>

> Hi all,

> I went to an Integrative Medicine doctor yesterday with my zrt lab

> results...

>

> First thing he wanted me to do------ start IODINE!!!! yep, he said I

> should be on it for my thyroid, but even more as a preventative for

> breast, uterine, ovary cancers. My mom has had breast cancer 2x so this

> was a thing I was studying on. He said to take 12.5 mg, but I am

> already at 25 mg.

>

> Also, due to my high anti-bodies to TPO, he is giving me Cytomel (T3) in

> place of Synthroid (T4). Without the TPO enzyme, I cannot convert the

> T4 into the active T3. No wonder I felt like I drag a 2 ton elephant

> around behind me all day long!!!

>

> After I get a bit better on the T3, he will address my low progesterone

> with OTC cream.

>

> So anyways, one doctor for the Iodine protocol, albeit a bit on the low

> dose side!!! :-)

>

>

>

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Guest guest

doesn't anyone have any advice for the OP? it seems whenever anyone hijacks a

post the OP is left hanging. sorry, i just always feel badly when i see this

happening. i think she needs some help.

i wish i could contribute, but i'm new here and just learning.

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What are you referring to? What is an OP? Please resend with the e-mail you are referring to attached. With all the posts on this group, we depend on replying on the previous post to have all the necessary information. Thanks!Donna in IL doesn't anyone have any advice for the OP? it seems whenever anyone hijacks a post the OP is left hanging. sorry, i just always feel badly when i see this happening. i think she needs some help.i wish i could contribute, but i'm new here and just learning.

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What are you referring to? Who needs help?

Buist, ND

Owner / Iodine Group

Re: new doctor

doesn't anyone have any advice for the OP? it seems whenever anyone hijacks a post the OP is left hanging. sorry, i just always feel badly when i see this happening. i think she needs some help.i wish i could contribute, but i'm new here and just learning.

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