Re: Hi, I am new to the group and would like some help

[Guest guest]

The first thing is this: The neurologist may or may not be helpful. The

infectious disease doctor will almost certainly be a waste of time and money,

because that field has an alternative (and deeply wrong) view of what Lyme is.

You will probably find them reluctant to test, and even more reluctant to treat.

And if they do test, the test probably won't be an adequate one. It's a harsh

thing to say, but you will do yourself a favor if you don't get your

expectations up about what this doctor is likely to do for you.

The test you want is called an Igenex test. Your GP probably won't order this

for you, and your insurance will very likely not pay for it -- yet this is the

only test that looks for the full, comprehensive range of Lyme-relevant bands.

The best way to get an Igenex test -- and the fastest way to get yourself into

really effective treatment -- is to find a Lyme-literate MD (LLMD) ASAP. If you

let us know where you're located, people in your area can contact you off-list

and make suggestions.

A lot of us wasted a lot of money with non-LL doctors before we finally just bit

the bullet and did the right thing.

Your blood work does look suspicious. In addition to the Igenex panel, your LLMD

will probably also take a CD-57 natural killer cell test. Lyme makes the numbers

come out very, very low -- something no other disease does.

Sara

On Dec 30, 2010, at 10:10 42AM, shellbearclark wrote:

> Hi everyone,

>

> I think I have lyme disease but my GP will not test me (even though she tested

me for everything else). She refered me to a Rhuemotoid specialist and an

Infectious specialist but I am waiting for appts. The Rheumotid dr can't see me

until March. I am still waiting for a call back for the infectious dr. The

have the blood work results from my GP. I have high neutrophils and low

lymphocytes which indicate an infection. Did anyone else have similar results

before they were tested for lyme? Also my C-reactive protein is higher than

normal. Anyone too? I am very fustrated. I was bite by a tick in April with

no rash but my legs started bothering me. I thought it was the new tile in the

house but my legs kept aching on and off. Two weeks ago, I could bearly climb

the stairs and had fevers come and go. Also, I have night sweets, poor memory,

and severe headaches. If its not lyme disease than I just want to know what is

wrong. Any help or info would be greatly appreciated. Thanks and happy new

year.

>

>

> Red Bluff, CA

>

>

>

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

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Find a LLMD and u don't need referral. Name state so we can point u.

my GP. I have high neutrophils and low lymphocytes which indicate an

infection. Did anyone else have similar results before they were tested for

lyme? Also my C-reactive protein is higher than normal. Anyone too? I am very

fustrated. I was bite by a tick in April with no rash but my legs started

bothering me. I thought it was the new tile in the house but my legs kept aching

on and off. Two weeks ago, I could bearly climb the stairs and had fevers come

and go. Also, I have night sweets, poor memory, and severe headaches. If its not

lyme disease than I just want to know what is wrong. Any help or info would be

greatly appreciated. Thanks and happy new year.

Red Bluff, CA

[Guest guest]

Thanks for the info Sara,

I live in Northern California. Do you know a dr around here that is LLMD?

" Don't cry because it's over. Smile because it happened. " - Dr. Seuss

From: srobinson@...

Date: Thu, 30 Dec 2010 10:37:12 -0800

Subject: Re: [ ] Hi, I am new to the group and would like some help

The first thing is this: The neurologist may or may not be helpful. The

infectious disease doctor will almost certainly be a waste of time and money,

because that field has an alternative (and deeply wrong) view of what Lyme is.

You will probably find them reluctant to test, and even more reluctant to treat.

And if they do test, the test probably won't be an adequate one. It's a harsh

thing to say, but you will do yourself a favor if you don't get your

expectations up about what this doctor is likely to do for you.

The test you want is called an Igenex test. Your GP probably won't order this

for you, and your insurance will very likely not pay for it -- yet this is the

only test that looks for the full, comprehensive range of Lyme-relevant bands.

The best way to get an Igenex test -- and the fastest way to get yourself into

really effective treatment -- is to find a Lyme-literate MD (LLMD) ASAP. If you

let us know where you're located, people in your area can contact you off-list

and make suggestions.

A lot of us wasted a lot of money with non-LL doctors before we finally just bit

the bullet and did the right thing.

Your blood work does look suspicious. In addition to the Igenex panel, your LLMD

will probably also take a CD-57 natural killer cell test. Lyme makes the numbers

come out very, very low -- something no other disease does.

Sara

On Dec 30, 2010, at 10:10 42AM, shellbearclark wrote:

> Hi everyone,

>

> I think I have lyme disease but my GP will not test me (even though she tested

me for everything else). She refered me to a Rhuemotoid specialist and an

Infectious specialist but I am waiting for appts. The Rheumotid dr can't see me

until March. I am still waiting for a call back for the infectious dr. The have

the blood work results from my GP. I have high neutrophils and low lymphocytes

which indicate an infection. Did anyone else have similar results before they

were tested for lyme? Also my C-reactive protein is higher than normal. Anyone

too? I am very fustrated. I was bite by a tick in April with no rash but my legs

started bothering me. I thought it was the new tile in the house but my legs

kept aching on and off. Two weeks ago, I could bearly climb the stairs and had

fevers come and go. Also, I have night sweets, poor memory, and severe

headaches. If its not lyme disease than I just want to know what is wrong. Any

help or info would be greatly appreciated. Thanks and happy new year.

>

>

> Red Bluff, CA

>

>

>

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

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

sounds like you might have babesia and ehrlichia in addition to lyme. GP and

ID testing is not reliable. Igenex is one of the best but you have to pay

out of pocket and lyme (even by CDC standard) is a clinical diagnosis.

please say where you are located so some can get you info on lyme literate

medical dr's (llmd) in your area, unfortunately they do not usually take

insurance so visits are out of pocket but usually/sometimes your insurance

will pay for the Rx of antibiotics they prescribe, that is my case. best

wishes to you, do whatever you can to get correct diagnosis and treatment

started asap!

On Thu, Dec 30, 2010 at 10:10 AM, shellbearclark <shellbearclark@...

> wrote:

>

>

> Hi everyone,

>

> I think I have lyme disease but my GP will not test me (even though she

> tested me for everything else). She refered me to a Rhuemotoid specialist

> and an Infectious specialist but I am waiting for appts. The Rheumotid dr

> can't see me until March. I am still waiting for a call back for the

> infectious dr. The have the blood work results from my GP. I have high

> neutrophils and low lymphocytes which indicate an infection. Did anyone else

> have similar results before they were tested for lyme? Also my C-reactive

> protein is higher than normal. Anyone too? I am very fustrated. I was bite

> by a tick in April with no rash but my legs started bothering me. I thought

> it was the new tile in the house but my legs kept aching on and off. Two

> weeks ago, I could bearly climb the stairs and had fevers come and go. Also,

> I have night sweets, poor memory, and severe headaches. If its not lyme

> disease than I just want to know what is wrong. Any help or info would be

> greatly appreciated. Thanks and happy new year.

>

>

> Red Bluff, CA

>

>

>

[Guest guest]

I want to tell you my story and that is I was negative at Quest on lyme titers

and then took 200mg doxy for 10days and got re-tested and lo and behold I had a

CDC positive result on a Western Blot from Quest and later sent my blood to

Igenex and have lots of bands but not a CDC + result.  My daughter has a + at

Quest for Ehrlichia and Borrelia and other labs gave back the same results with

the addition of Babesia duncani and Bartonella.  You should get tested if you

have insurance at Quest or Labcorp first and then go to Igenex if you do not get

a positive..why use that money when you can use it for your co-pay on meds...

Get tested for Ehrlichia, Babesia microti, Bartonella, mycoplasma pneumoniae,

Brucella, Tularemia, Epstein Barr VIrus, Cytomegalovirus, Hsv 1 and 2, HHV-6, 7,

8, C3a and C4 and CD 57 should be done at labcorp.  C-reactive protein, ANA,

iella burnetti or Q fever and others....othewise slowly you will figure out

you need to be tested for many of these co-infections.  Get someone to test for

all genetic defects for hypercoagulation ...etc...No LLMD I saw ever told me or

tested me for these other problems and I had to figure this out on my own...also

test your immune system by checking your sub classes of IgG antibodies 1-4. 

Good Luck and ask people for info who have been dealing with this for

awhile...26 months of treatment for me...but sick many years before

that....Regards, Dolores

>

>

> Hi everyone,

>

> I think I have lyme disease but my GP will not test me (even though she

> tested me for everything else). She refered me to a Rhuemotoid specialist

> and an Infectious specialist but I am waiting for appts. The Rheumotid dr

> can't see me until March. I am still waiting for a call back for the

> infectious dr. The have the blood work results from my GP. I have high

> neutrophils and low lymphocytes which indicate an infection. Did anyone else

> have similar results before they were tested for lyme? Also my C-reactive

> protein is higher than normal. Anyone too? I am very fustrated. I was bite

> by a tick in April with no rash but my legs started bothering me. I thought

> it was the new tile in the house but my legs kept aching on and off. Two

> weeks ago, I could bearly climb the stairs and had fevers come and go. Also,

> I have night sweets, poor memory, and severe headaches. If its not lyme

> disease than I just want to know what is wrong. Any help or info would be

> greatly appreciated. Thanks and happy new year.

>

>

> Red Bluff, CA

>

> 

>

[Guest guest]

I'm new as well. Just started going thru the ordeal before Christmas. I live

in northern VA fairfax county area. Can you recommend some docs for me. Thanks

in advance.

[Guest guest]

I'm betting 99 to 1 that you have Lyme, and I'm betting your GP will not

test you because Lyme is such a political hot potato. When you go the

specialists, I'd refuse any Lyme test except through IgeneX. The rest are a

waste of money. I have had Lyme for 25.5 years, treated for only the last

year. My CRP has been about 14 for years. I haven't had it tested since

being on treatment. Good luck.

Val

Posted by: " shellbearclark " shellbearclark@... shellbearclark

Thu Dec 30, 2010 10:23 am (PST)

I think I have lyme disease but my GP will not test me (even though she

tested me for everything else). She refered me to a Rhuemotoid specialist

and an Infectious specialist but I am waiting for appts. The Rheumotid dr

can't see me until March. I am still waiting for a call back for the

infectious dr. The have the blood work results from my GP. I have high

neutrophils and low lymphocytes which indicate an infection. Did anyone else

have similar results before they were tested for lyme? Also my C-reactive

protein is higher than normal. Anyone too? I am very fustrated. I was bite

by a tick in April with no rash but my legs started bothering me. I thought

it was the new tile in the house but my legs kept aching on and off. Two

weeks ago, I could bearly climb the stairs and had fevers come and go. Also,

I have night sweets, poor memory, and severe headaches. If its not lyme

disease than I just want to know what is wrong. Any help or info would be

greatly appreciat ed. Thanks and happy new year.

[Guest guest]

I don't live in NorCal (anymore), but there are definitely first-rate LLMDs to

be found in your area. Northern California was the first place outside New

England where Lyme emerged, so it's endemic there and has been for a long time.

I personally probably got bit while hiking in the Santa Cruz mountains in the

summer of 1984.

Sara

On Dec 30, 2010, at 11:51 24AM, wrote:

>

> Thanks for the info Sara,

>

> I live in Northern California. Do you know a dr around here that is LLMD?

>

>

>

>

> " Don't cry because it's over. Smile because it happened. " - Dr. Seuss

>

>

>

>

>

>

>

>

>

> From: srobinson@...

> Date: Thu, 30 Dec 2010 10:37:12 -0800

> Subject: Re: [ ] Hi, I am new to the group and would like some help

>

>

>

>

>

>

> The first thing is this: The neurologist may or may not be helpful. The

infectious disease doctor will almost certainly be a waste of time and money,

because that field has an alternative (and deeply wrong) view of what Lyme is.

You will probably find them reluctant to test, and even more reluctant to treat.

And if they do test, the test probably won't be an adequate one. It's a harsh

thing to say, but you will do yourself a favor if you don't get your

expectations up about what this doctor is likely to do for you.

>

> The test you want is called an Igenex test. Your GP probably won't order this

for you, and your insurance will very likely not pay for it -- yet this is the

only test that looks for the full, comprehensive range of Lyme-relevant bands.

The best way to get an Igenex test -- and the fastest way to get yourself into

really effective treatment -- is to find a Lyme-literate MD (LLMD) ASAP. If you

let us know where you're located, people in your area can contact you off-list

and make suggestions.

>

> A lot of us wasted a lot of money with non-LL doctors before we finally just

bit the bullet and did the right thing.

>

> Your blood work does look suspicious. In addition to the Igenex panel, your

LLMD will probably also take a CD-57 natural killer cell test. Lyme makes the

numbers come out very, very low -- something no other disease does.

>

> Sara

>

> On Dec 30, 2010, at 10:10 42AM, shellbearclark wrote:

>

>> Hi everyone,

>>

>> I think I have lyme disease but my GP will not test me (even though she

tested me for everything else). She refered me to a Rhuemotoid specialist and an

Infectious specialist but I am waiting for appts. The Rheumotid dr can't see me

until March. I am still waiting for a call back for the infectious dr. The have

the blood work results from my GP. I have high neutrophils and low lymphocytes

which indicate an infection. Did anyone else have similar results before they

were tested for lyme? Also my C-reactive protein is higher than normal. Anyone

too? I am very fustrated. I was bite by a tick in April with no rash but my legs

started bothering me. I thought it was the new tile in the house but my legs

kept aching on and off. Two weeks ago, I could bearly climb the stairs and had

fevers come and go. Also, I have night sweets, poor memory, and severe

headaches. If its not lyme disease than I just want to know what is wrong. Any

help or info would be greatly appreciated. Thanks and happy new year.

>>

>>

>> Red Bluff, CA

>>

>>

>>

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

>>

>> Lyme Disease News continually updated from thousands of sources around the

>> net: http://www.topix.net/health/lyme-disease

>>

>> MedWorm: The latest items on: Lyme Disease

>> http://tinyurl.com/23dgy8

>>

[Guest guest]

, There is a great support group in our area (I live in Burke) It is part of

National Capital Lyme www.natcaplyme.org . Our group meets in the Fairfax area.

I dont think there is a meeting in January, but should be one in Feb. Try the

website, there is good info there.

[Guest guest]

This is & nbsp;great info.

Next I would love to know:

If you can't & nbsp;get to LLMD what direction/instruction do you & nbsp;give your

PCP/PCM to help treat you?

Thanks in advance.

Robyn

-- Sent from my Palm Pre

On Jan 2, 2011 2:22, Dolores Claesson & lt;dclaesson@... & gt; wrote:

& nbsp;

I want to tell you my story and that is I was negative at Quest on lyme titers

and then took 200mg doxy for 10days and got re-tested and lo and behold I had a

CDC positive result on a Western Blot from Quest and later sent my blood to

Igenex and have lots of bands but not a CDC + result. & nbsp; My daughter has a +

at Quest for Ehrlichia and Borrelia and other labs gave back the same results

with the addition of Babesia duncani and Bartonella. & nbsp; You should get tested

if you have insurance at Quest or Labcorp first and then go to Igenex if you do

not get a positive..why use that money when you can use it for your co-pay on

meds...

Get tested for Ehrlichia, Babesia microti, Bartonella, mycoplasma pneumoniae,

Brucella, Tularemia, Epstein Barr VIrus, Cytomegalovirus, Hsv 1 and 2, HHV-6, 7,

8, C3a and C4 and CD 57 should be done at labcorp. & nbsp; C-reactive protein,

ANA, iella burnetti or Q fever and others....othewise slowly you will figure

out you need to be tested for many of these co-infections. & nbsp; Get someone to

test for all genetic defects for hypercoagulation ...etc...No LLMD I saw ever

told me or tested me for these other problems and I had to figure this out on my

own...also test your immune system by checking your sub classes of IgG

antibodies 1-4. & nbsp; Good Luck and ask people for info who have been dealing

with this for awhile...26 months of treatment for me...but sick many years

before that....Regards, Dolores

& gt;

& gt;

& gt; Hi everyone,

& gt;

& gt; I think I have lyme disease but my GP will not test me (even though she

& gt; tested me for everything else). She refered me to a Rhuemotoid specialist

& gt; and an Infectious specialist but I am waiting for appts. The Rheumotid dr

& gt; can't see me until March. I am still waiting for a call back for the

& gt; infectious dr. The have the blood work results from my GP. I have high

& gt; neutrophils and low lymphocytes which indicate an infection. Did anyone

else

& gt; have similar results before they were tested for lyme? Also my C-reactive

& gt; protein is higher than normal. Anyone too? I am very fustrated. I was bite

& gt; by a tick in April with no rash but my legs started bothering me. I thought

& gt; it was the new tile in the house but my legs kept aching on and off. Two

& gt; weeks ago, I could bearly climb the stairs and had fevers come and go.

Also,

& gt; I have night sweets, poor memory, and severe headaches. If its not lyme

& gt; disease than I just want to know what is wrong. Any help or info would be

& gt; greatly appreciated. Thanks and happy new year.

& gt;

& gt;

& gt; Red Bluff, CA

& gt;

& gt; & nbsp;

& gt;

[Guest guest]

just a warning....i have heard some peoples stories that their insurance

company will only took the results from labcorp or quest and denied covering

treatment even tho a later test at igenex said positive...just what i have

heard.

On Thu, Dec 30, 2010 at 3:41 PM, Dolores Claesson <dclaesson@...>wrote:

>

>

> I want to tell you my story and that is I was negative at Quest on lyme

> titers and then took 200mg doxy for 10days and got re-tested and lo and

> behold I had a CDC positive result on a Western Blot from Quest and later

> sent my blood to Igenex and have lots of bands but not a CDC + result. My

> daughter has a + at Quest for Ehrlichia and Borrelia and other labs gave

> back the same results with the addition of Babesia duncani and Bartonella.

> You should get tested if you have insurance at Quest or Labcorp first and

> then go to Igenex if you do not get a positive..why use that money when you

> can use it for your co-pay on meds...

> Get tested for Ehrlichia, Babesia microti, Bartonella, mycoplasma

> pneumoniae, Brucella, Tularemia, Epstein Barr VIrus, Cytomegalovirus, Hsv 1

> and 2, HHV-6, 7, 8, C3a and C4 and CD 57 should be done at labcorp.

> C-reactive protein, ANA, iella burnetti or Q fever and others....othewise

> slowly you will figure out you need to be tested for many of these

> co-infections. Get someone to test for all genetic defects for

> hypercoagulation ...etc...No LLMD I saw ever told me or tested me for these

> other problems and I had to figure this out on my own...also test your

> immune system by checking your sub classes of IgG antibodies 1-4. Good Luck

> and ask people for info who have been dealing with this for awhile...26

> months of treatment for me...but sick many years before that....Regards,

> Dolores

>

>

>

> >

> >

> > Hi everyone,

> >

> > I think I have lyme disease but my GP will not test me (even though she

> > tested me for everything else). She refered me to a Rhuemotoid specialist

> > and an Infectious specialist but I am waiting for appts. The Rheumotid dr

> > can't see me until March. I am still waiting for a call back for the

> > infectious dr. The have the blood work results from my GP. I have high

> > neutrophils and low lymphocytes which indicate an infection. Did anyone

> else

> > have similar results before they were tested for lyme? Also my C-reactive

> > protein is higher than normal. Anyone too? I am very fustrated. I was

> bite

> > by a tick in April with no rash but my legs started bothering me. I

> thought

> > it was the new tile in the house but my legs kept aching on and off. Two

> > weeks ago, I could bearly climb the stairs and had fevers come and go.

> Also,

> > I have night sweets, poor memory, and severe headaches. If its not lyme

> > disease than I just want to know what is wrong. Any help or info would be

> > greatly appreciated. Thanks and happy new year.

> >

> >

> > Red Bluff, CA

> >

> >

> >

>

>

[Guest guest]

>

> I'm new as well. Just started going thru the ordeal before Christmas. I live

in northern VA fairfax county area. Can you recommend some docs for me. Thanks

in advance.

>

>

>

Hi, ,

There is a wonderful LLAD doctor in Fairfax. My doctor here actually recommended

her to me. I can't remember her name, but she is on youtube, talking about Lyme

and is in Fairfax. If you can't find her, I'll try to get the name for you

again.

Blessings,

Carole

[Guest guest]

download and print out the burrascano guidelines and give them to your dr.

and plead with him to follow the treatment guidelines for you. i would even

ask for a trail run of a couple months to have them see if you get better,

remember tho, that you might feel worse first due to herxing but you then

inform your dr. that that can be expected and even proof that you are going

in the right direction with the treatment. if you have HMO and your dr.

won't see if you can get a second opinion or change dr.'s. if you have ppo,

keep going around till you find an open minded, want to help the patient

kind of dr.

best wishes

On Sun, Jan 2, 2011 at 5:01 AM, Robyn Iuliano <

hamptonroadsaspergers@...> wrote:

>

>

> This is & nbsp;great info.

>

> Next I would love to know:

> If you can't & nbsp;get to LLMD what direction/instruction do you & nbsp;give

> your PCP/PCM to help treat you?

>

> Thanks in advance.

> Robyn

>

> -- Sent from my Palm Pre

> On Jan 2, 2011 2:22, Dolores Claesson

& lt;dclaesson@...<dclaesson%40verizon.net> & gt;

> wrote:

>

> & nbsp;

>

> I want to tell you my story and that is I was negative at Quest on lyme

> titers and then took 200mg doxy for 10days and got re-tested and lo and

> behold I had a CDC positive result on a Western Blot from Quest and later

> sent my blood to Igenex and have lots of bands but not a CDC + result. & nbsp;

> My daughter has a + at Quest for Ehrlichia and Borrelia and other labs gave

> back the same results with the addition of Babesia duncani and

> Bartonella. & nbsp; You should get tested if you have insurance at Quest or

> Labcorp first and then go to Igenex if you do not get a positive..why use

> that money when you can use it for your co-pay on meds...

>

> Get tested for Ehrlichia, Babesia microti, Bartonella, mycoplasma

> pneumoniae, Brucella, Tularemia, Epstein Barr VIrus, Cytomegalovirus, Hsv 1

> and 2, HHV-6, 7, 8, C3a and C4 and CD 57 should be done at labcorp. & nbsp;

> C-reactive protein, ANA, iella burnetti or Q fever and others....othewise

> slowly you will figure out you need to be tested for many of these

> co-infections. & nbsp; Get someone to test for all genetic defects for

> hypercoagulation ...etc...No LLMD I saw ever told me or tested me for these

> other problems and I had to figure this out on my own...also test your

> immune system by checking your sub classes of IgG antibodies 1-4. & nbsp; Good

> Luck and ask people for info who have been dealing with this for awhile...26

> months of treatment for me...but sick many years before that....Regards,

> Dolores

>

>

>

> & gt;

>

> & gt;

>

> & gt; Hi everyone,

>

> & gt;

>

> & gt; I think I have lyme disease but my GP will not test me (even though

> she

>

> & gt; tested me for everything else). She refered me to a Rhuemotoid

> specialist

>

> & gt; and an Infectious specialist but I am waiting for appts. The Rheumotid

> dr

>

> & gt; can't see me until March. I am still waiting for a call back for the

>

> & gt; infectious dr. The have the blood work results from my GP. I have high

>

> & gt; neutrophils and low lymphocytes which indicate an infection. Did

> anyone else

>

> & gt; have similar results before they were tested for lyme? Also my

> C-reactive

>

> & gt; protein is higher than normal. Anyone too? I am very fustrated. I was

> bite

>

> & gt; by a tick in April with no rash but my legs started bothering me. I

> thought

>

> & gt; it was the new tile in the house but my legs kept aching on and off.

> Two

>

> & gt; weeks ago, I could bearly climb the stairs and had fevers come and go.

> Also,

>

> & gt; I have night sweets, poor memory, and severe headaches. If its not

> lyme

>

> & gt; disease than I just want to know what is wrong. Any help or info would

> be

>

> & gt; greatly appreciated. Thanks and happy new year.

>

> & gt;

>

> & gt;

>

> & gt; Red Bluff, CA

>

> & gt;

>

> & gt; & nbsp;

>

> & gt;

>

>

>

[Guest guest]

I used 200 mg doxy and sero converted to pos at Quest....so I would try that

first and then if no pos would go to Igenex...30 % sero convert if they use doxy

for 10-14 days and lyme has been in my body forever...I had chronic lyme 18

years ago. 

From: Valarie <val@...>

Subject: [ ] Re: Hi, I am new to the group and would like some help

Date: Friday, December 31, 2010, 8:39 PM

 

I'm betting 99 to 1 that you have Lyme, and I'm betting your GP will not

test you because Lyme is such a political hot potato. When you go the

specialists, I'd refuse any Lyme test except through IgeneX. The rest are a

waste of money. I have had Lyme for 25.5 years, treated for only the last

year. My CRP has been about 14 for years. I haven't had it tested since

being on treatment. Good luck.

Val

Posted by: " shellbearclark " shellbearclark@... shellbearclark

Thu Dec 30, 2010 10:23 am (PST)

I think I have lyme disease but my GP will not test me (even though she

tested me for everything else). She refered me to a Rhuemotoid specialist

and an Infectious specialist but I am waiting for appts. The Rheumotid dr

can't see me until March. I am still waiting for a call back for the

infectious dr. The have the blood work results from my GP. I have high

neutrophils and low lymphocytes which indicate an infection. Did anyone else

have similar results before they were tested for lyme? Also my C-reactive

protein is higher than normal. Anyone too? I am very fustrated. I was bite

by a tick in April with no rash but my legs started bothering me. I thought

it was the new tile in the house but my legs kept aching on and off. Two

weeks ago, I could bearly climb the stairs and had fevers come and go. Also,

I have night sweets, poor memory, and severe headaches. If its not lyme

disease than I just want to know what is wrong. Any help or info would be

greatly appreciat ed. Thanks and happy new year.

[Guest guest]

Thanks. Spoke with them this morn.

Sent from my iPad

On Jan 2, 2011, at 6:38 AM, " Padgett " <c.padgett1@...> wrote:

, There is a great support group in our area (I live in Burke) It is part of

National Capital Lyme www.natcaplyme.org . Our group meets in the Fairfax area.

I dont think there is a meeting in January, but should be one in Feb. Try the

website, there is good info there.

[Guest guest]

Thanks. Spoke with them this morn.

Sent from my iPad

On Jan 2, 2011, at 6:38 AM, " Padgett " <c.padgett1@...> wrote:

, There is a great support group in our area (I live in Burke) It is part of

National Capital Lyme www.natcaplyme.org . Our group meets in the Fairfax area.

I dont think there is a meeting in January, but should be one in Feb. Try the

website, there is good info there.

[Guest guest]

Thanks carole I'll check.

Sent from my iPad

On Jan 2, 2011, at 1:50 PM, " carolebethro " <Carolebethro@...> wrote:

>

> I'm new as well. Just started going thru the ordeal before Christmas. I live

in northern VA fairfax county area. Can you recommend some docs for me. Thanks

in advance.

>

>

>

Hi, ,

There is a wonderful LLAD doctor in Fairfax. My doctor here actually recommended

her to me. I can't remember her name, but she is on youtube, talking about Lyme

and is in Fairfax. If you can't find her, I'll try to get the name for you

again.

Blessings,

Carole

[Guest guest]

Thanks carole I'll check.

Sent from my iPad

On Jan 2, 2011, at 1:50 PM, " carolebethro " <Carolebethro@...> wrote:

>

> I'm new as well. Just started going thru the ordeal before Christmas. I live

in northern VA fairfax county area. Can you recommend some docs for me. Thanks

in advance.

>

>

>

Hi, ,

There is a wonderful LLAD doctor in Fairfax. My doctor here actually recommended

her to me. I can't remember her name, but she is on youtube, talking about Lyme

and is in Fairfax. If you can't find her, I'll try to get the name for you

again.

Blessings,

Carole

[Guest guest]

If you still need a Dr, there is one in San Francisco. Contact me direct and I

will give you the info. kathy@...

Re: [ ] Hi, I am new to the group and would like some help

>

>

>

>

>

>

> The first thing is this: The neurologist may or may not be helpful. The

infectious disease doctor will almost certainly be a waste of time and money,

because that field has an alternative (and deeply wrong) view of what Lyme is.

You will probably find them reluctant to test, and even more reluctant to treat.

And if they do test, the test probably won't be an adequate one. It's a harsh

thing to say, but you will do yourself a favor if you don't get your

expectations up about what this doctor is likely to do for you.

>

> The test you want is called an Igenex test. Your GP probably won't order

this for you, and your insurance will very likely not pay for it -- yet this is

the only test that looks for the full, comprehensive range of Lyme-relevant

bands. The best way to get an Igenex test -- and the fastest way to get yourself

into really effective treatment -- is to find a Lyme-literate MD (LLMD) ASAP. If

you let us know where you're located, people in your area can contact you

off-list and make suggestions.

>

> A lot of us wasted a lot of money with non-LL doctors before we finally just

bit the bullet and did the right thing.

>

> Your blood work does look suspicious. In addition to the Igenex panel, your

LLMD will probably also take a CD-57 natural killer cell test. Lyme makes the

numbers come out very, very low -- something no other disease does.

>

> Sara

>

> On Dec 30, 2010, at 10:10 42AM, shellbearclark wrote:

>

>> Hi everyone,

>>

>> I think I have lyme disease but my GP will not test me (even though she

tested me for everything else). She refered me to a Rhuemotoid specialist and an

Infectious specialist but I am waiting for appts. The Rheumotid dr can't see me

until March. I am still waiting for a call back for the infectious dr. The have

the blood work results from my GP. I have high neutrophils and low lymphocytes

which indicate an infection. Did anyone else have similar results before they

were tested for lyme? Also my C-reactive protein is higher than normal. Anyone

too? I am very fustrated. I was bite by a tick in April with no rash but my legs

started bothering me. I thought it was the new tile in the house but my legs

kept aching on and off. Two weeks ago, I could bearly climb the stairs and had

fevers come and go. Also, I have night sweets, poor memory, and severe

headaches. If its not lyme disease than I just want to know what is wrong. Any

help or info would be greatly appreciated. T! hanks and happy new year.

>>

>>

>> Red Bluff, CA

>>

>>

>>

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

>>

>> Lyme Disease News continually updated from thousands of sources around the

>> net: http://www.topix.net/health/lyme-disease

>>

>> MedWorm: The latest items on: Lyme Disease

>> http://tinyurl.com/23dgy8

>>

[Guest guest]

Great, I hope to see you at a meeting!

[Guest guest]

Hi ,

My LLMD is located in Sacramento. If you need the info send me a direct email

and I'll give you that info.

Jeannie

~~~~~~~~~~~~~~~~~~~~~~~~

On Dec 30, 2010, at 11:51 24AM, wrote:

> I live in Northern California. Do you know a dr around here that is LLMD?

>

>

>