Re: Need for clear Lyme diagnosis

[Guest guest]

Hi a:

I really wish there was a clear Lyme diagnosis and definitive test.

I took antibiotics for 2 years, but I am still sick and my doctor

says it is the aftereffects of Lyme disease. I no longer test

positive for Lyme, but I know the tests are unreliable.

I had CFS decades before I came down with Lyme disease in 1998. It

is always possible I had Lyme before then, but was just bitten by a

second tick in 1998. At that time, I got a round rash that lasted 3

weeks, and a month later I started having heart problems I had never

had before. Then I tested positive for the Lyme spirochete.

Antibiotics improved me about 40 to 50 per cent until I had to have a

hysterectomy. Now I can't tolerate antibiotics (probably because of

the toxicity of the general anesthesia and antibiotics. Probably

because of lowered glutathione levels too.)

Now, I am trying to crawl out of this hole by healing my gut, P5P,

taurine, zinc, small amounts of glutathione, etc. But I wonder if I

will get very far if I still have Lyme infection. Maybe glutathione

will kill the Lyme spirochete. I have to gather my strenth and get

some methylation and sulfuration testing done! I am so tired today.

Vickie

>

> I thought some would find this of interest. I suspect there are

still

> a lot of us with cfs/fms diagnosis who may have Lyme or some other

> infection underlying the symptoms. Hopefully this will be helpful

to

> some as you consider what to do.

> a

>

> Subject: mystery disease diagnosed as Lyme - MN

>

> http://tinyurl.com/alydm

>

> (Created: Wednesday, December 28, 2005 8:51 AM CST)

> Maple Grove resident continues recovery after mystery disease

> diagnosed as Lyme by Erlien

>

> Last February, Maple Grove resident Sue felt she had

hit

> rock bottom.

>

> She was in constant pain that worsened daily and had been to

> every doctor and specialist she thought was possible, incurring

above

> $300,000 in medical expenses.

>

> " I laid in bed thinking 'this is it'. I couldn't do anything.

I

> couldn't walk, sleep or function in daily life. There were no more

> doctors. No more tests. I wanted to talk about dying. I thought

that

> is where the pain would lead me, " said.

>

> After all the doctors and multitude of tests, was left

> with no diagnosis and a life of constant pain.

>

> " I wanted to talk about dying. I wanted to make peace with

> myself and make preparations. My mom was the first one willing to

> talk about my wishes and it was like admitting I was going to die, "

> said . " I prayed I would die quickly or receive an answer as

to

> why I was so sick. During our conversation, out of the blue, my mom

> mentioned Lyme disease. "

>

> Little would realize, the conversation about the

> possible end of her life would lead her to the discovery that would

> allow her to live her life again.

>

> was diagnosed with Lyme and Bartonella disease in

March

> 2005. The diagnosis and treatment, she explained with a smile, is

> letting her live her life again.

>

> Although cannot determine the date she contracted the

> diseases, she started developing symptoms in August 2004. She did

not

> experience the classic " bulls eye rash " associated with Lyme

disease,

> which may have led to an earlier diagnosis. Symptoms began in the

> form of the feeling of pins and needles in her feet. " It was

unusual,

> but nothing other than a minor annoyance, " said . " I knew

> something was wrong, but it wasn't anything I felt I should see a

> doctor about. "

>

> In November 2004, existing symptoms had worsened, spreading

> through her body and additional symptoms appeared. decided

it

> was time to visit a doctor when she could no longer sleep at night

> due to a resting heartbeat of 90-120 beats per minute. According to

> the American Heart Association, the average individual has a

resting

> heart rate of 60 to 80 beats per minute. She was placed on high

blood

> pressure medication, but symptoms continued to worsen and new

> symptoms continued to appear.

>

> " I started having a consent buzzing feeling in my body, "

> explained . " Eventually, I had fainting episodes, mini

seizures

> and convulsions. "

>

> In addition to a general practitioner, visited a

stream

> of

> specialists ranging from cardiologists to infectious disease

> specialists and had a multitude of tests performed.

indicated

> that a test was completed for Lyme disease, but it had provided a

> false negative.

>

> During one of her many clinic visits, was advised her

> problems stemmed from depression due to her age and circumstances.

>

> " I was insulted, but I went along with the antidepressants

with

> the hopes it would cure me. Everything continued to get worse, "

said

> . " I was so scared. By the time I had scheduled the multiple

> appointments and tests, I was numb up my left foot to my ankle. My

> right foot and right hand were numb along with the right side of my

> face. The usual sensations I had felt with my hand were gone. If I

> tried to pet the dog, I couldn't feel anything. "

>

> According to the Lyme Disease Foundation, Lyme disease

symptoms

> can often imitate other diseases and can be misdiagnosed. Some

> individuals do not notice the early indicators of the disease, such

> as flu-like feelings of headache, stiff neck, fever, muscle aches,

> fatigue and a possible rash from the bite. Once early indicators of

> the infection disappear, the disease can disseminate to other

organs.

> The LDF indicates Lyme disease can adversely affect many portions

of

> the body, such as the brain, eyes, skin, heart, joints, liver,

lungs,

> muscles, digestive system and spleen and can affect pregnancy.

>

> As time progressed, made repeated visits to the

> emergency room. Her ability to walk was gone. She no longer could

> complete simple, daily functions such as changing her clothes,

> bathing or brushing her teeth. Husband, Mike, and daughter,

Madelyn,

> assumed the role as her caregiver. Since she is self-employed, she

> was did not receive disability benefits and was unable to continue

> working.

>

> Then found her answer.

>

> As she discussed her illness and what appeared to be a fatal

> outcome with her mother on the cold winter day, her mother

mentioned

> Lyme disease and its symptoms. The discussion lead to research on

the

> Internet and the shocking discovery that a majority of the symptoms

> was experiencing were also found in Lyme disease patients.

>

> " I couldn't find any Lyme disease doctors in Minnesota or

> Wisconsin to confirm what I felt was wrong with me, " explained

> . A specialist was located in Missouri and ,

accompanied

> by her husband, set an appointment.

>

> " At that point, I had to ride in a wheelchair and be carried

by

> Mike. I could barely handle the plane ride due to the pain, " said

> .

>

> Once at the Missouri clinic, a Western Blot test was done and

> sent to the Center for Disease Control lab and a Lyme lab, IgeneX

> Inc., in Texas. had been advised that it was the most

> clinically accepted test available. The test came back positive and

> began antibiotic treatment immediately. Her doctor also

> diagnosed her with Bartonella based on clinical observation, which

> involved a review of pictures and 's recounting of an episode

> of being bit by sand flies in March 2004 while vacationing in the

> Caribbean.

>

> Nine months after the diagnosis of Lyme and Bartonella,

> continues to improve. She has resumed her business and continues to

> strive toward a complete recovery while dealing with lingering

> systems such as cold hands and feet, ringing in the ears and tiring

> more easily.

>

> Although she is significantly improved, still requires

> ongoing medical treatment.

>

> " I need to take several types of antibiotics to ensure that I

> totally wipe out all forms of the Lyme bacteria in my system. I

also

> take a lot of supplements aimed at fighting Lyme disease, " said

> .

>

> According to , she also took an antibiotic called

> Rifampin that was used specifically to treat Bartonella. " How one

> responds to an

> antibiotic is also an excellent indicator of which type of diseases

> one

> has, " said .

>

> Along with the ongoing antibiotic treatment, she continues to

> have a phone consultation with her Lyme doctor every four to six

> months and yearly visits. She also continues to have regular lab

work

> done at a local clinic, which is faxed to the Missouri physician,

to

> ensure there are no negative side effects from the long-term

> antibiotic usage.

>

> Upon looking back, feels that the diseases have

changed

> her life.

>

> " Mike, Madelyn and my mom came through for me and they proved

> to be my saviors. I was also very surprised at other family members

> and friends who were there for me and so wonderful. I now

personally

> have much more awareness of others around me who have special

needs, "

> said . " I feel less concerned about the day-to-day stuff and

> know that it will all work out. I try to remember on a daily basis

> how far I have come and how lucky I am to be walking around and

just

> doing the small stuff. "

>

>

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

--

> ----------

> Copyright © 2005. Sun Newspapers

>

[Guest guest]

Vickie, I hear you. And you are talking about TWO problems, diagnosis

and treatment. Neither are exactly state of the art.

At this point IgeneX can do three tests for borrelia. (Of course many

have caught babesia, bartonella and mycoplasmas) For bartonella the

tests one would want to invest in (Medicare covers these tests) are

IgG western blot

IgM western blot

urine antigen test with three samples sent in following 5 days of

antibiotics - I would use whatever antibiotics seemed to work for you

in the past.

THEN HAVE A REVERSE WEESTERN BLOT DONE ON ANY POSITIVE SAMPLE - YOU

WILL NOT BE CHARGED FOR THIS TEST IF THERE ARE NO POSITIVE SAMPLES.

If you have this final test as a positive you can be reasonably

certain that you have borrelia. I think anyone with Medicare coverage

should absolutely get these tests run even if you have taken

antiboitics in the past and have not recovered. It is highly likely

you were not given the appropriate antibiotics for your infection or

did not take them long enough. For example I was on antibiotics for

seven years and still test positive for borrelia.

a Carnes

>

> Hi a:

>

> I really wish there was a clear Lyme diagnosis and definitive

test.

> I took antibiotics for 2 years, but I am still sick and my doctor

> says it is the aftereffects of Lyme disease. I no longer test

> positive for Lyme, but I know the tests are unreliable.

>

> I had CFS decades before I came down with Lyme disease in 1998. It

> is always possible I had Lyme before then, but was just bitten by a

> second tick in 1998. At that time, I got a round rash that lasted

3

> weeks, and a month later I started having heart problems I had

never

> had before. Then I tested positive for the Lyme spirochete.

>

> Antibiotics improved me about 40 to 50 per cent until I had to have

a

> hysterectomy. Now I can't tolerate antibiotics (probably because

of

> the toxicity of the general anesthesia and antibiotics. Probably

> because of lowered glutathione levels too.)

>

> Now, I am trying to crawl out of this hole by healing my gut, P5P,

> taurine, zinc, small amounts of glutathione, etc. But I wonder if

I

> will get very far if I still have Lyme infection. Maybe

glutathione

> will kill the Lyme spirochete. I have to gather my strenth and get

> some methylation and sulfuration testing done! I am so tired today.

>

> Vickie

>

>

> >

> > I thought some would find this of interest. I suspect there are

> still

> > a lot of us with cfs/fms diagnosis who may have Lyme or some

other

> > infection underlying the symptoms. Hopefully this will be helpful

> to

> > some as you consider what to do.

> > a

> >

> > Subject: mystery disease diagnosed as Lyme - MN

> >

> > http://tinyurl.com/alydm

> >

> > (Created: Wednesday, December 28, 2005 8:51 AM CST)

> > Maple Grove resident continues recovery after mystery disease

> > diagnosed as Lyme by Erlien

> >

> > Last February, Maple Grove resident Sue felt she had

> hit

> > rock bottom.

> >

> > She was in constant pain that worsened daily and had been

to

> > every doctor and specialist she thought was possible, incurring

> above

> > $300,000 in medical expenses.

> >

> > " I laid in bed thinking 'this is it'. I couldn't do

anything.

> I

> > couldn't walk, sleep or function in daily life. There were no

more

> > doctors. No more tests. I wanted to talk about dying. I thought

> that

> > is where the pain would lead me, " said.

> >

> > After all the doctors and multitude of tests, was

left

> > with no diagnosis and a life of constant pain.

> >

> > " I wanted to talk about dying. I wanted to make peace with

> > myself and make preparations. My mom was the first one willing to

> > talk about my wishes and it was like admitting I was going to

die, "

> > said . " I prayed I would die quickly or receive an answer

as

> to

> > why I was so sick. During our conversation, out of the blue, my

mom

> > mentioned Lyme disease. "

> >

> > Little would realize, the conversation about the

> > possible end of her life would lead her to the discovery that

would

> > allow her to live her life again.

> >

> > was diagnosed with Lyme and Bartonella disease in

> March

> > 2005. The diagnosis and treatment, she explained with a smile, is

> > letting her live her life again.

> >

> > Although cannot determine the date she contracted

the

> > diseases, she started developing symptoms in August 2004. She did

> not

> > experience the classic " bulls eye rash " associated with Lyme

> disease,

> > which may have led to an earlier diagnosis. Symptoms began in the

> > form of the feeling of pins and needles in her feet. " It was

> unusual,

> > but nothing other than a minor annoyance, " said . " I knew

> > something was wrong, but it wasn't anything I felt I should see a

> > doctor about. "

> >

> > In November 2004, existing symptoms had worsened, spreading

> > through her body and additional symptoms appeared. decided

> it

> > was time to visit a doctor when she could no longer sleep at

night

> > due to a resting heartbeat of 90-120 beats per minute. According

to

> > the American Heart Association, the average individual has a

> resting

> > heart rate of 60 to 80 beats per minute. She was placed on high

> blood

> > pressure medication, but symptoms continued to worsen and new

> > symptoms continued to appear.

> >

> > " I started having a consent buzzing feeling in my body, "

> > explained . " Eventually, I had fainting episodes, mini

> seizures

> > and convulsions. "

> >

> > In addition to a general practitioner, visited a

> stream

> > of

> > specialists ranging from cardiologists to infectious disease

> > specialists and had a multitude of tests performed.

> indicated

> > that a test was completed for Lyme disease, but it had provided a

> > false negative.

> >

> > During one of her many clinic visits, was advised

her

> > problems stemmed from depression due to her age and circumstances.

> >

> > " I was insulted, but I went along with the antidepressants

> with

> > the hopes it would cure me. Everything continued to get worse, "

> said

> > . " I was so scared. By the time I had scheduled the

multiple

> > appointments and tests, I was numb up my left foot to my ankle.

My

> > right foot and right hand were numb along with the right side of

my

> > face. The usual sensations I had felt with my hand were gone. If

I

> > tried to pet the dog, I couldn't feel anything. "

> >

> > According to the Lyme Disease Foundation, Lyme disease

> symptoms

> > can often imitate other diseases and can be misdiagnosed. Some

> > individuals do not notice the early indicators of the disease,

such

> > as flu-like feelings of headache, stiff neck, fever, muscle

aches,

> > fatigue and a possible rash from the bite. Once early indicators

of

> > the infection disappear, the disease can disseminate to other

> organs.

> > The LDF indicates Lyme disease can adversely affect many portions

> of

> > the body, such as the brain, eyes, skin, heart, joints, liver,

> lungs,

> > muscles, digestive system and spleen and can affect pregnancy.

> >

> > As time progressed, made repeated visits to the

> > emergency room. Her ability to walk was gone. She no longer could

> > complete simple, daily functions such as changing her clothes,

> > bathing or brushing her teeth. Husband, Mike, and daughter,

> Madelyn,

> > assumed the role as her caregiver. Since she is self-employed,

she

> > was did not receive disability benefits and was unable to

continue

> > working.

> >

> > Then found her answer.

> >

> > As she discussed her illness and what appeared to be a

fatal

> > outcome with her mother on the cold winter day, her mother

> mentioned

> > Lyme disease and its symptoms. The discussion lead to research on

> the

> > Internet and the shocking discovery that a majority of the

symptoms

> > was experiencing were also found in Lyme disease patients.

> >

> > " I couldn't find any Lyme disease doctors in Minnesota or

> > Wisconsin to confirm what I felt was wrong with me, " explained

> > . A specialist was located in Missouri and ,

> accompanied

> > by her husband, set an appointment.

> >

> > " At that point, I had to ride in a wheelchair and be

carried

> by

> > Mike. I could barely handle the plane ride due to the pain, " said

> > .

> >

> > Once at the Missouri clinic, a Western Blot test was done

and

> > sent to the Center for Disease Control lab and a Lyme lab, IgeneX

> > Inc., in Texas. had been advised that it was the most

> > clinically accepted test available. The test came back positive

and

> > began antibiotic treatment immediately. Her doctor also

> > diagnosed her with Bartonella based on clinical observation,

which

> > involved a review of pictures and 's recounting of an

episode

> > of being bit by sand flies in March 2004 while vacationing in the

> > Caribbean.

> >

> > Nine months after the diagnosis of Lyme and Bartonella,

> > continues to improve. She has resumed her business and continues

to

> > strive toward a complete recovery while dealing with lingering

> > systems such as cold hands and feet, ringing in the ears and

tiring

> > more easily.

> >

> > Although she is significantly improved, still

requires

> > ongoing medical treatment.

> >

> > " I need to take several types of antibiotics to ensure that

I

> > totally wipe out all forms of the Lyme bacteria in my system. I

> also

> > take a lot of supplements aimed at fighting Lyme disease, " said

> > .

> >

> > According to , she also took an antibiotic called

> > Rifampin that was used specifically to treat Bartonella. " How one

> > responds to an

> > antibiotic is also an excellent indicator of which type of

diseases

> > one

> > has, " said .

> >

> > Along with the ongoing antibiotic treatment, she continues

to

> > have a phone consultation with her Lyme doctor every four to six

> > months and yearly visits. She also continues to have regular lab

> work

> > done at a local clinic, which is faxed to the Missouri physician,

> to

> > ensure there are no negative side effects from the long-term

> > antibiotic usage.

> >

> > Upon looking back, feels that the diseases have

> changed

> > her life.

> >

> > " Mike, Madelyn and my mom came through for me and they

proved

> > to be my saviors. I was also very surprised at other family

members

> > and friends who were there for me and so wonderful. I now

> personally

> > have much more awareness of others around me who have special

> needs, "

> > said . " I feel less concerned about the day-to-day stuff

and

> > know that it will all work out. I try to remember on a daily

basis

> > how far I have come and how lucky I am to be walking around and

> just

> > doing the small stuff. "

> >

> >

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

--

> --

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

> > Copyright © 2005. Sun Newspapers

> >

>

[Guest guest]

DOing a lot of reading about treatment of autism spectrum disorder,

I " ve concluded there are several sets of " lymies " (and CFSers clearly

have chronic infections, often lyme plus coinfections tho not always)

1) The person who gets the infection, has no genetic vulnerability in

terms of HLA subtypes or other unknown factors of molecular mimicry to

cause an outsize inflammatory/cytokine response, and either gets over

it, suppresses it, or takes some antibiotics and gets completely well

2) The person who gets the infection and/or multiple bites and

coinfections AND has a genetic vulnerability in terms of an outsize

inflammatory response and gets VERY ill BUT has no other issues in

terms of liver detox, methylation issues, and goes on high dose

longterm antibiotics and maybe antifungals and is able to tolerate

these for months or years while steadily improving and ultimately

probably getting well

3) The unlucky person who gets the infection and/or multiple bites and

coinfections AND has a genetic vulnerability in terms of the outsize

inflammatory response because of molecular mimicry, AND gets very ill

AND has a priori genetically inherited vulnerabilities in terms of

liver detox (p450) and methylation issues (which can be epigenetic

because of being somewhat weak in these areas but then exposed to

toxic doses of mercury in particular or perhaps pesticides and other

heavy metals) and was already vulnerable and perhaps not particularly

well and once they have these infections CANNOT tolerate months and

years of drugs of any kind, so the infections persist, wreaking

inflammatory havoc, further weakening p450 and methylation systems, etc.

What does this last person do? I've done supportive therapies such as

hyperbaric oxygen, gamma globulin, magnesium, glutathione, and I'mg

going to try and add in some of the other stuff they're doing for ASD,

which are the methylation precursors such as TMG DMG folinic acid etc

and increase my IV glutathione to 2x week when I can and see how I do

with oral, otherwise try transdermal and try to figure out how to

chelate mercury which was the first insult to my system at age 15 or

so. I'm finding the readin gon the ASD kids fascinating as basically

they are us, imo, the third group.

> > >

> > > I thought some would find this of interest. I suspect there are

> > still

> > > a lot of us with cfs/fms diagnosis who may have Lyme or some

> other

> > > infection underlying the symptoms. Hopefully this will be helpful

> > to

> > > some as you consider what to do.

> > > a

> > >

> > > Subject: mystery disease diagnosed as Lyme - MN

> > >

> > > http://tinyurl.com/alydm

> > >

> > > (Created: Wednesday, December 28, 2005 8:51 AM CST)

> > > Maple Grove resident continues recovery after mystery disease

> > > diagnosed as Lyme by Erlien

> > >

> > > Last February, Maple Grove resident Sue felt she had

> > hit

> > > rock bottom.

> > >

> > > She was in constant pain that worsened daily and had been

> to

> > > every doctor and specialist she thought was possible, incurring

> > above

> > > $300,000 in medical expenses.

> > >

> > > " I laid in bed thinking 'this is it'. I couldn't do

> anything.

> > I

> > > couldn't walk, sleep or function in daily life. There were no

> more

> > > doctors. No more tests. I wanted to talk about dying. I thought

> > that

> > > is where the pain would lead me, " said.

> > >

> > > After all the doctors and multitude of tests, was

> left

> > > with no diagnosis and a life of constant pain.

> > >

> > > " I wanted to talk about dying. I wanted to make peace with

> > > myself and make preparations. My mom was the first one willing to

> > > talk about my wishes and it was like admitting I was going to

> die, "

> > > said . " I prayed I would die quickly or receive an answer

> as

> > to

> > > why I was so sick. During our conversation, out of the blue, my

> mom

> > > mentioned Lyme disease. "

> > >

> > > Little would realize, the conversation about the

> > > possible end of her life would lead her to the discovery that

> would

> > > allow her to live her life again.

> > >

> > > was diagnosed with Lyme and Bartonella disease in

> > March

> > > 2005. The diagnosis and treatment, she explained with a smile, is

> > > letting her live her life again.

> > >

> > > Although cannot determine the date she contracted

> the

> > > diseases, she started developing symptoms in August 2004. She did

> > not

> > > experience the classic " bulls eye rash " associated with Lyme

> > disease,

> > > which may have led to an earlier diagnosis. Symptoms began in the

> > > form of the feeling of pins and needles in her feet. " It was

> > unusual,

> > > but nothing other than a minor annoyance, " said . " I knew

> > > something was wrong, but it wasn't anything I felt I should see a

> > > doctor about. "

> > >

> > > In November 2004, existing symptoms had worsened, spreading

> > > through her body and additional symptoms appeared. decided

> > it

> > > was time to visit a doctor when she could no longer sleep at

> night

> > > due to a resting heartbeat of 90-120 beats per minute. According

> to

> > > the American Heart Association, the average individual has a

> > resting

> > > heart rate of 60 to 80 beats per minute. She was placed on high

> > blood

> > > pressure medication, but symptoms continued to worsen and new

> > > symptoms continued to appear.

> > >

> > > " I started having a consent buzzing feeling in my body, "

> > > explained . " Eventually, I had fainting episodes, mini

> > seizures

> > > and convulsions. "

> > >

> > > In addition to a general practitioner, visited a

> > stream

> > > of

> > > specialists ranging from cardiologists to infectious disease

> > > specialists and had a multitude of tests performed.

> > indicated

> > > that a test was completed for Lyme disease, but it had provided a

> > > false negative.

> > >

> > > During one of her many clinic visits, was advised

> her

> > > problems stemmed from depression due to her age and circumstances.

> > >

> > > " I was insulted, but I went along with the antidepressants

> > with

> > > the hopes it would cure me. Everything continued to get worse, "

> > said

> > > . " I was so scared. By the time I had scheduled the

> multiple

> > > appointments and tests, I was numb up my left foot to my ankle.

> My

> > > right foot and right hand were numb along with the right side of

> my

> > > face. The usual sensations I had felt with my hand were gone. If

> I

> > > tried to pet the dog, I couldn't feel anything. "

> > >

> > > According to the Lyme Disease Foundation, Lyme disease

> > symptoms

> > > can often imitate other diseases and can be misdiagnosed. Some

> > > individuals do not notice the early indicators of the disease,

> such

> > > as flu-like feelings of headache, stiff neck, fever, muscle

> aches,

> > > fatigue and a possible rash from the bite. Once early indicators

> of

> > > the infection disappear, the disease can disseminate to other

> > organs.

> > > The LDF indicates Lyme disease can adversely affect many portions

> > of

> > > the body, such as the brain, eyes, skin, heart, joints, liver,

> > lungs,

> > > muscles, digestive system and spleen and can affect pregnancy.

> > >

> > > As time progressed, made repeated visits to the

> > > emergency room. Her ability to walk was gone. She no longer could

> > > complete simple, daily functions such as changing her clothes,

> > > bathing or brushing her teeth. Husband, Mike, and daughter,

> > Madelyn,

> > > assumed the role as her caregiver. Since she is self-employed,

> she

> > > was did not receive disability benefits and was unable to

> continue

> > > working.

> > >

> > > Then found her answer.

> > >

> > > As she discussed her illness and what appeared to be a

> fatal

> > > outcome with her mother on the cold winter day, her mother

> > mentioned

> > > Lyme disease and its symptoms. The discussion lead to research on

> > the

> > > Internet and the shocking discovery that a majority of the

> symptoms

> > > was experiencing were also found in Lyme disease patients.

> > >

> > > " I couldn't find any Lyme disease doctors in Minnesota or

> > > Wisconsin to confirm what I felt was wrong with me, " explained

> > > . A specialist was located in Missouri and ,

> > accompanied

> > > by her husband, set an appointment.

> > >

> > > " At that point, I had to ride in a wheelchair and be

> carried

> > by

> > > Mike. I could barely handle the plane ride due to the pain, " said

> > > .

> > >

> > > Once at the Missouri clinic, a Western Blot test was done

> and

> > > sent to the Center for Disease Control lab and a Lyme lab, IgeneX

> > > Inc., in Texas. had been advised that it was the most

> > > clinically accepted test available. The test came back positive

> and

> > > began antibiotic treatment immediately. Her doctor also

> > > diagnosed her with Bartonella based on clinical observation,

> which

> > > involved a review of pictures and 's recounting of an

> episode

> > > of being bit by sand flies in March 2004 while vacationing in the

> > > Caribbean.

> > >

> > > Nine months after the diagnosis of Lyme and Bartonella,

>

> > > continues to improve. She has resumed her business and continues

> to

> > > strive toward a complete recovery while dealing with lingering

> > > systems such as cold hands and feet, ringing in the ears and

> tiring

> > > more easily.

> > >

> > > Although she is significantly improved, still

> requires

> > > ongoing medical treatment.

> > >

> > > " I need to take several types of antibiotics to ensure that

> I

> > > totally wipe out all forms of the Lyme bacteria in my system. I

> > also

> > > take a lot of supplements aimed at fighting Lyme disease, " said

> > > .

> > >

> > > According to , she also took an antibiotic called

> > > Rifampin that was used specifically to treat Bartonella. " How one

> > > responds to an

> > > antibiotic is also an excellent indicator of which type of

> diseases

> > > one

> > > has, " said .

> > >

> > > Along with the ongoing antibiotic treatment, she continues

> to

> > > have a phone consultation with her Lyme doctor every four to six

> > > months and yearly visits. She also continues to have regular lab

> > work

> > > done at a local clinic, which is faxed to the Missouri physician,

> > to

> > > ensure there are no negative side effects from the long-term

> > > antibiotic usage.

> > >

> > > Upon looking back, feels that the diseases have

> > changed

> > > her life.

> > >

> > > " Mike, Madelyn and my mom came through for me and they

> proved

> > > to be my saviors. I was also very surprised at other family

> members

> > > and friends who were there for me and so wonderful. I now

> > personally

> > > have much more awareness of others around me who have special

> > needs, "

> > > said . " I feel less concerned about the day-to-day stuff

> and

> > > know that it will all work out. I try to remember on a daily

> basis

> > > how far I have come and how lucky I am to be walking around and

> > just

> > > doing the small stuff. "

> > >

> > >

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

> --

> > --

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

> > > Copyright © 2005. Sun Newspapers

> > >

> >

>

[Guest guest]

a, would you clarify " reverse western blot done on any positive

sample " . What is a reverse western blot? Thanks!!

> I would use whatever antibiotics seemed to work for you

> in the past.

> THEN HAVE A REVERSE WEESTERN BLOT DONE ON ANY POSITIVE SAMPLE - YOU

> WILL NOT BE CHARGED FOR THIS TEST IF THERE ARE NO POSITIVE SAMPLES.

>

> If you have this final test as a positive you can be reasonably

> certain that you have borrelia. I think anyone with Medicare

coverage

> should absolutely get these tests run even if you have taken

> antiboitics in the past and have not recovered. It is highly likely

> you were not given the appropriate antibiotics for your infection

or

> did not take them long enough. For example I was on antibiotics for

> seven years and still test positive for borrelia.

>

> a Carnes

>

> >

>

[Guest guest]

Jill, good assessment. I think you nailed it. Vickie

> I " ve concluded there are several sets of " lymies " (and CFSers

clearly

> have chronic infections, often lyme plus coinfections tho not

always)

>

> 1) The person who gets the infection, has no genetic vulnerability

in

> terms of HLA subtypes or other unknown factors of molecular mimicry

to

> cause an outsize inflammatory/cytokine response, and either gets

over

> it, suppresses it, or takes some antibiotics and gets completely

well

>

> 2) The person who gets the infection and/or multiple bites and

> coinfections AND has a genetic vulnerability in terms of an outsize

> inflammatory response and gets VERY ill BUT has no other issues in

> terms of liver detox, methylation issues, and goes on high dose

> longterm antibiotics and maybe antifungals and is able to tolerate

> these for months or years while steadily improving and ultimately

> probably getting well

>

> 3) The unlucky person who gets the infection and/or multiple bites

and

> coinfections AND has a genetic vulnerability in terms of the outsize

> inflammatory response because of molecular mimicry, AND gets very

ill

> AND has a priori genetically inherited vulnerabilities in terms of

> liver detox (p450) and methylation issues (which can be epigenetic

> because of being somewhat weak in these areas but then exposed to

> toxic doses of mercury in particular or perhaps pesticides and other

> heavy metals) and was already vulnerable and perhaps not

particularly

> well and once they have these infections CANNOT tolerate months and

> years of drugs of any kind, so the infections persist, wreaking

> inflammatory havoc, further weakening p450 and methylation systems,

etc.

>

> What does this last person do? I've done supportive therapies such

as

> hyperbaric oxygen, gamma globulin, magnesium, glutathione, and I'mg

> going to try and add in some of the other stuff they're doing for

ASD,

> which are the methylation precursors such as TMG DMG folinic acid

etc

> and increase my IV glutathione to 2x week when I can and see how I

do

> with oral, otherwise try transdermal and try to figure out how to

> chelate mercury which was the first insult to my system at age 15 or

> so. I'm finding the readin gon the ASD kids fascinating as basically

> they are us, imo, the third group.

>

>

> > > >

> > > > I thought some would find this of interest. I suspect there

are

> > > still

> > > > a lot of us with cfs/fms diagnosis who may have Lyme or some

> > other

> > > > infection underlying the symptoms. Hopefully this will be

helpful

> > > to

> > > > some as you consider what to do.

> > > > a

> > > >

> > > > Subject: mystery disease diagnosed as Lyme - MN

> > > >

> > > > http://tinyurl.com/alydm

> > > >

> > > > (Created: Wednesday, December 28, 2005 8:51 AM CST)

> > > > Maple Grove resident continues recovery after mystery disease

> > > > diagnosed as Lyme by Erlien

> > > >

> > > > Last February, Maple Grove resident Sue felt she

had

> > > hit

> > > > rock bottom.

> > > >

> > > > She was in constant pain that worsened daily and had

been

> > to

> > > > every doctor and specialist she thought was possible,

incurring

> > > above

> > > > $300,000 in medical expenses.

> > > >

> > > > " I laid in bed thinking 'this is it'. I couldn't do

> > anything.

> > > I

> > > > couldn't walk, sleep or function in daily life. There were no

> > more

> > > > doctors. No more tests. I wanted to talk about dying. I

thought

> > > that

> > > > is where the pain would lead me, " said.

> > > >

> > > > After all the doctors and multitude of tests,

was

> > left

> > > > with no diagnosis and a life of constant pain.

> > > >

> > > > " I wanted to talk about dying. I wanted to make peace

with

> > > > myself and make preparations. My mom was the first one

willing to

> > > > talk about my wishes and it was like admitting I was going to

> > die, "

> > > > said . " I prayed I would die quickly or receive an

answer

> > as

> > > to

> > > > why I was so sick. During our conversation, out of the blue,

my

> > mom

> > > > mentioned Lyme disease. "

> > > >

> > > > Little would realize, the conversation about the

> > > > possible end of her life would lead her to the discovery that

> > would

> > > > allow her to live her life again.

> > > >

> > > > was diagnosed with Lyme and Bartonella disease

in

> > > March

> > > > 2005. The diagnosis and treatment, she explained with a

smile, is

> > > > letting her live her life again.

> > > >

> > > > Although cannot determine the date she

contracted

> > the

> > > > diseases, she started developing symptoms in August 2004. She

did

> > > not

> > > > experience the classic " bulls eye rash " associated with Lyme

> > > disease,

> > > > which may have led to an earlier diagnosis. Symptoms began in

the

> > > > form of the feeling of pins and needles in her feet. " It was

> > > unusual,

> > > > but nothing other than a minor annoyance, " said . " I

knew

> > > > something was wrong, but it wasn't anything I felt I should

see a

> > > > doctor about. "

> > > >

> > > > In November 2004, existing symptoms had worsened,

spreading

> > > > through her body and additional symptoms appeared.

decided

> > > it

> > > > was time to visit a doctor when she could no longer sleep at

> > night

> > > > due to a resting heartbeat of 90-120 beats per minute.

According

> > to

> > > > the American Heart Association, the average individual has a

> > > resting

> > > > heart rate of 60 to 80 beats per minute. She was placed on

high

> > > blood

> > > > pressure medication, but symptoms continued to worsen and new

> > > > symptoms continued to appear.

> > > >

> > > > " I started having a consent buzzing feeling in my

body, "

> > > > explained . " Eventually, I had fainting episodes, mini

> > > seizures

> > > > and convulsions. "

> > > >

> > > > In addition to a general practitioner, visited a

> > > stream

> > > > of

> > > > specialists ranging from cardiologists to infectious disease

> > > > specialists and had a multitude of tests performed.

> > > indicated

> > > > that a test was completed for Lyme disease, but it had

provided a

> > > > false negative.

> > > >

> > > > During one of her many clinic visits, was

advised

> > her

> > > > problems stemmed from depression due to her age and

circumstances.

> > > >

> > > > " I was insulted, but I went along with the

antidepressants

> > > with

> > > > the hopes it would cure me. Everything continued to get

worse, "

> > > said

> > > > . " I was so scared. By the time I had scheduled the

> > multiple

> > > > appointments and tests, I was numb up my left foot to my

ankle.

> > My

> > > > right foot and right hand were numb along with the right side

of

> > my

> > > > face. The usual sensations I had felt with my hand were gone.

If

> > I

> > > > tried to pet the dog, I couldn't feel anything. "

> > > >

> > > > According to the Lyme Disease Foundation, Lyme disease

> > > symptoms

> > > > can often imitate other diseases and can be misdiagnosed.

Some

> > > > individuals do not notice the early indicators of the

disease,

> > such

> > > > as flu-like feelings of headache, stiff neck, fever, muscle

> > aches,

> > > > fatigue and a possible rash from the bite. Once early

indicators

> > of

> > > > the infection disappear, the disease can disseminate to other

> > > organs.

> > > > The LDF indicates Lyme disease can adversely affect many

portions

> > > of

> > > > the body, such as the brain, eyes, skin, heart, joints,

liver,

> > > lungs,

> > > > muscles, digestive system and spleen and can affect pregnancy.

> > > >

> > > > As time progressed, made repeated visits to the

> > > > emergency room. Her ability to walk was gone. She no longer

could

> > > > complete simple, daily functions such as changing her

clothes,

> > > > bathing or brushing her teeth. Husband, Mike, and daughter,

> > > Madelyn,

> > > > assumed the role as her caregiver. Since she is self-

employed,

> > she

> > > > was did not receive disability benefits and was unable to

> > continue

> > > > working.

> > > >

> > > > Then found her answer.

> > > >

> > > > As she discussed her illness and what appeared to be a

> > fatal

> > > > outcome with her mother on the cold winter day, her mother

> > > mentioned

> > > > Lyme disease and its symptoms. The discussion lead to

research on

> > > the

> > > > Internet and the shocking discovery that a majority of the

> > symptoms

> > > > was experiencing were also found in Lyme disease

patients.

> > > >

> > > > " I couldn't find any Lyme disease doctors in Minnesota

or

> > > > Wisconsin to confirm what I felt was wrong with me, "

explained

> > > > . A specialist was located in Missouri and ,

> > > accompanied

> > > > by her husband, set an appointment.

> > > >

> > > > " At that point, I had to ride in a wheelchair and be

> > carried

> > > by

> > > > Mike. I could barely handle the plane ride due to the pain, "

said

> > > > .

> > > >

> > > > Once at the Missouri clinic, a Western Blot test was

done

> > and

> > > > sent to the Center for Disease Control lab and a Lyme lab,

IgeneX

> > > > Inc., in Texas. had been advised that it was the most

> > > > clinically accepted test available. The test came back

positive

> > and

> > > > began antibiotic treatment immediately. Her doctor

also

> > > > diagnosed her with Bartonella based on clinical observation,

> > which

> > > > involved a review of pictures and 's recounting of an

> > episode

> > > > of being bit by sand flies in March 2004 while vacationing in

the

> > > > Caribbean.

> > > >

> > > > Nine months after the diagnosis of Lyme and Bartonella,

> >

> > > > continues to improve. She has resumed her business and

continues

> > to

> > > > strive toward a complete recovery while dealing with

lingering

> > > > systems such as cold hands and feet, ringing in the ears and

> > tiring

> > > > more easily.

> > > >

> > > > Although she is significantly improved, still

> > requires

> > > > ongoing medical treatment.

> > > >

> > > > " I need to take several types of antibiotics to ensure

that

> > I

> > > > totally wipe out all forms of the Lyme bacteria in my system.

I

> > > also

> > > > take a lot of supplements aimed at fighting Lyme disease, "

said

> > > > .

> > > >

> > > > According to , she also took an antibiotic called

> > > > Rifampin that was used specifically to treat Bartonella. " How

one

> > > > responds to an

> > > > antibiotic is also an excellent indicator of which type of

> > diseases

> > > > one

> > > > has, " said .

> > > >

> > > > Along with the ongoing antibiotic treatment, she

continues

> > to

> > > > have a phone consultation with her Lyme doctor every four to

six

> > > > months and yearly visits. She also continues to have regular

lab

> > > work

> > > > done at a local clinic, which is faxed to the Missouri

physician,

> > > to

> > > > ensure there are no negative side effects from the long-term

> > > > antibiotic usage.

> > > >

> > > > Upon looking back, feels that the diseases have

> > > changed

> > > > her life.

> > > >

> > > > " Mike, Madelyn and my mom came through for me and they

> > proved

> > > > to be my saviors. I was also very surprised at other family

> > members

> > > > and friends who were there for me and so wonderful. I now

> > > personally

> > > > have much more awareness of others around me who have special

> > > needs, "

> > > > said . " I feel less concerned about the day-to-day

stuff

> > and

> > > > know that it will all work out. I try to remember on a daily

> > basis

> > > > how far I have come and how lucky I am to be walking around

and

> > > just

> > > > doing the small stuff. "

> > > >

> > > >

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

----

> > --

> > > --

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

> > > > Copyright © 2005. Sun Newspapers

> > > >

> > >

> >

>

[Guest guest]

Hi Vickie,

Now I get to show my ignorance. I'm not finding Igenex's explanation

of their reverse western blot. I THINK the reverse western blot is a

western blot on the antigen found in the urine to be sure it is

borrelia. They have a nice explanation of the urine test, but they

don't indicate that you SHOULD be on antibiotics the week of the

urine test. My understanding is that the urine antigen test with the

reverse western blot is about as definitive a test as you can get,

except maybe for Lida Matman's work at Bowen Lab.

The reason I say this is because my son who has Lyme went to Dr.

for testing and treatment, and that is basically what

told him. BTW my husband, one son, and I are all positive for

Lyme.

Here is the simple quote from IgeneX. They suggest a PCR for

borrelia. However, I think PCRs of blood are questionable given that

borrelia do not stay in peripheral blood much.

Based on our tracking, as well as input from our client physicians

and our clinical consultant, the initial tests to order for Lyme

disease are the IGeneX IgM and IgG Western Blot and PCRs. The Western

Blots are used to determine if the patient is making antibodies.

Since some patients do not make antibodies, the Lyme Serum PCR for

DNA (# 453) or the Lyme Whole Blood PCR for DNA (# 456) is included

in the initial panel.

Thus, the Initial Lyme Panel includes both Western Blots and your

choice of PCR:

Panel 5000:

#s 188, 189 & 453 (PCR—serum)

Panel 5010:

#s188, 189 & 456 (PCR—whole blood)

If the above panel is negative, the follow-up test for Lyme disease

is the Lyme Dot Blot / PCR Panel # 875. This panel looks for pieces

of the bacteria in urine as well as the DNA of Lyme in the urine.

Most physicians use an antibiotic challenge to make the test more

sensitive. The antibiotic protocol, as well as the general

instructions, can be found in the urine testing kit available from

the laboratory. You may also call IGeneX for a copy.

The combination of all of the above tests provides higher than 90%

sensitivity and better than 95% specificity. Remember that Lyme

disease is a clinical diagnosis and testing can support your clinical

presentation.

We also offer tests for the common co-infections of Babesia,

Ehrlichia, and Bartonella. These co-infections are seen in

approximately 20% of the patients with Lyme disease. The usual first

tests to order for the co-infections are IFA antibody tests: # 200

Babesia microti; # 203 or 206 Ehrlichia; and # 285 Bartonella. In

Northern California, Oregon and Washington State, # 710 (Babesia WA-

1) is substituted for # 200 for Babesia antibodies. Panels have been

established for the Midwest/Eastern Region (Panel 5020), the Western

Region (Panel 5040), and the Southern Region (Panel 5050). The FISH

test (# 640) is also used because it is a sensitive indicator of

Babesia infection, even in the absence of antibodies.

Test kits are available with shipping materials at no charge from

IGeneX, Inc. Call 800.832.3200 or e-mail us at

customerservice@...

>

> a, would you clarify " reverse western blot done on any positive

> sample " . What is a reverse western blot? Thanks!!

[Guest guest]

Jill,

Nice summary of the possibilities. But who knows? I have followed

Shoemaker's info and can't even figure out which genotype I am. I

have the lab results and can't understand them.

Then I know of at least one severe Lyme case who tried everything and

is doing real well on the Marshall Protocol. I couldn't take the

Benicar after a year.

I think I would fit your second group, given what I know at this

point. I don't seem to have trouble clearing mercury. I do have

rather severe issues with mold. I do stabilize on antibiotics but

relapse off them. I am now trying Recuperation and magnesium

taurinate and some Zithromax - doing better than I have in a long

time. I am beginning to believe in magic. Science doesn't seem to pay

off in this mess.

a

> DOing a lot of reading about treatment of autism spectrum disorder,

> I " ve concluded there are several sets of " lymies " (and CFSers

clearly

> have chronic infections, often lyme plus coinfections tho not

always)

>

> 1) The person who gets the infection, has no genetic vulnerability

in

> terms of HLA subtypes or other unknown factors of molecular mimicry

to

> cause an outsize inflammatory/cytokine response, and either gets

over

> it, suppresses it, or takes some antibiotics and gets completely

well

>

> 2) The person who gets the infection and/or multiple bites and

> coinfections AND has a genetic vulnerability in terms of an outsize

> inflammatory response and gets VERY ill BUT has no other issues in

> terms of liver detox, methylation issues, and goes on high dose

> longterm antibiotics and maybe antifungals and is able to tolerate

> these for months or years while steadily improving and ultimately

> probably getting well

>

> 3) The unlucky person who gets the infection and/or multiple bites

and

> coinfections AND has a genetic vulnerability in terms of the outsize

> inflammatory response because of molecular mimicry, AND gets very

ill

> AND has a priori genetically inherited vulnerabilities in terms of

> liver detox (p450) and methylation issues (which can be epigenetic

> because of being somewhat weak in these areas but then exposed to

> toxic doses of mercury in particular or perhaps pesticides and other

> heavy metals) and was already vulnerable and perhaps not

particularly

> well and once they have these infections CANNOT tolerate months and

> years of drugs of any kind, so the infections persist, wreaking

> inflammatory havoc, further weakening p450 and methylation systems,

etc.

>

> What does this last person do? I've done supportive therapies such

as

> hyperbaric oxygen, gamma globulin, magnesium, glutathione, and I'mg

> going to try and add in some of the other stuff they're doing for

ASD,

> which are the methylation precursors such as TMG DMG folinic acid

etc

> and increase my IV glutathione to 2x week when I can and see how I

do

> with oral, otherwise try transdermal and try to figure out how to

> chelate mercury which was the first insult to my system at age 15 or

> so. I'm finding the readin gon the ASD kids fascinating as basically

> they are us, imo, the third group.

>

>

> > > >

> > > > I thought some would find this of interest. I suspect there

are

> > > still

> > > > a lot of us with cfs/fms diagnosis who may have Lyme or some

> > other

> > > > infection underlying the symptoms. Hopefully this will be

helpful

> > > to

> > > > some as you consider what to do.

> > > > a

> > > >

> > > > Subject: mystery disease diagnosed as Lyme - MN

> > > >

> > > > http://tinyurl.com/alydm

> > > >

> > > > (Created: Wednesday, December 28, 2005 8:51 AM CST)

> > > > Maple Grove resident continues recovery after mystery disease

> > > > diagnosed as Lyme by Erlien

> > > >

> > > > Last February, Maple Grove resident Sue felt she

had

> > > hit

> > > > rock bottom.

> > > >

> > > > She was in constant pain that worsened daily and had

been

> > to

> > > > every doctor and specialist she thought was possible,

incurring

> > > above

> > > > $300,000 in medical expenses.

> > > >

> > > > " I laid in bed thinking 'this is it'. I couldn't do

> > anything.

> > > I

> > > > couldn't walk, sleep or function in daily life. There were no

> > more

> > > > doctors. No more tests. I wanted to talk about dying. I

thought

> > > that

> > > > is where the pain would lead me, " said.

> > > >

> > > > After all the doctors and multitude of tests,

was

> > left

> > > > with no diagnosis and a life of constant pain.

> > > >

> > > > " I wanted to talk about dying. I wanted to make peace

with

> > > > myself and make preparations. My mom was the first one

willing to

> > > > talk about my wishes and it was like admitting I was going to

> > die, "

> > > > said . " I prayed I would die quickly or receive an

answer

> > as

> > > to

> > > > why I was so sick. During our conversation, out of the blue,

my

> > mom

> > > > mentioned Lyme disease. "

> > > >

> > > > Little would realize, the conversation about the

> > > > possible end of her life would lead her to the discovery that

> > would

> > > > allow her to live her life again.

> > > >

> > > > was diagnosed with Lyme and Bartonella disease

in

> > > March

> > > > 2005. The diagnosis and treatment, she explained with a

smile, is

> > > > letting her live her life again.

> > > >

> > > > Although cannot determine the date she

contracted

> > the

> > > > diseases, she started developing symptoms in August 2004. She

did

> > > not

> > > > experience the classic " bulls eye rash " associated with Lyme

> > > disease,

> > > > which may have led to an earlier diagnosis. Symptoms began in

the

> > > > form of the feeling of pins and needles in her feet. " It was

> > > unusual,

> > > > but nothing other than a minor annoyance, " said . " I

knew

> > > > something was wrong, but it wasn't anything I felt I should

see a

> > > > doctor about. "

> > > >

> > > > In November 2004, existing symptoms had worsened,

spreading

> > > > through her body and additional symptoms appeared.

decided

> > > it

> > > > was time to visit a doctor when she could no longer sleep at

> > night

> > > > due to a resting heartbeat of 90-120 beats per minute.

According

> > to

> > > > the American Heart Association, the average individual has a

> > > resting

> > > > heart rate of 60 to 80 beats per minute. She was placed on

high

> > > blood

> > > > pressure medication, but symptoms continued to worsen and new

> > > > symptoms continued to appear.

> > > >

> > > > " I started having a consent buzzing feeling in my

body, "

> > > > explained . " Eventually, I had fainting episodes, mini

> > > seizures

> > > > and convulsions. "

> > > >

> > > > In addition to a general practitioner, visited a

> > > stream

> > > > of

> > > > specialists ranging from cardiologists to infectious disease

> > > > specialists and had a multitude of tests performed.

> > > indicated

> > > > that a test was completed for Lyme disease, but it had

provided a

> > > > false negative.

> > > >

> > > > During one of her many clinic visits, was

advised

> > her

> > > > problems stemmed from depression due to her age and

circumstances.

> > > >

> > > > " I was insulted, but I went along with the

antidepressants

> > > with

> > > > the hopes it would cure me. Everything continued to get

worse, "

> > > said

> > > > . " I was so scared. By the time I had scheduled the

> > multiple

> > > > appointments and tests, I was numb up my left foot to my

ankle.

> > My

> > > > right foot and right hand were numb along with the right side

of

> > my

> > > > face. The usual sensations I had felt with my hand were gone.

If

> > I

> > > > tried to pet the dog, I couldn't feel anything. "

> > > >

> > > > According to the Lyme Disease Foundation, Lyme disease

> > > symptoms

> > > > can often imitate other diseases and can be misdiagnosed.

Some

> > > > individuals do not notice the early indicators of the

disease,

> > such

> > > > as flu-like feelings of headache, stiff neck, fever, muscle

> > aches,

> > > > fatigue and a possible rash from the bite. Once early

indicators

> > of

> > > > the infection disappear, the disease can disseminate to other

> > > organs.

> > > > The LDF indicates Lyme disease can adversely affect many

portions

> > > of

> > > > the body, such as the brain, eyes, skin, heart, joints,

liver,

> > > lungs,

> > > > muscles, digestive system and spleen and can affect pregnancy.

> > > >

> > > > As time progressed, made repeated visits to the

> > > > emergency room. Her ability to walk was gone. She no longer

could

> > > > complete simple, daily functions such as changing her

clothes,

> > > > bathing or brushing her teeth. Husband, Mike, and daughter,

> > > Madelyn,

> > > > assumed the role as her caregiver. Since she is self-

employed,

> > she

> > > > was did not receive disability benefits and was unable to

> > continue

> > > > working.

> > > >

> > > > Then found her answer.

> > > >

> > > > As she discussed her illness and what appeared to be a

> > fatal

> > > > outcome with her mother on the cold winter day, her mother

> > > mentioned

> > > > Lyme disease and its symptoms. The discussion lead to

research on

> > > the

> > > > Internet and the shocking discovery that a majority of the

> > symptoms

> > > > was experiencing were also found in Lyme disease

patients.

> > > >

> > > > " I couldn't find any Lyme disease doctors in Minnesota

or

> > > > Wisconsin to confirm what I felt was wrong with me, "

explained

> > > > . A specialist was located in Missouri and ,

> > > accompanied

> > > > by her husband, set an appointment.

> > > >

> > > > " At that point, I had to ride in a wheelchair and be

> > carried

> > > by

> > > > Mike. I could barely handle the plane ride due to the pain, "

said

> > > > .

> > > >

> > > > Once at the Missouri clinic, a Western Blot test was

done

> > and

> > > > sent to the Center for Disease Control lab and a Lyme lab,

IgeneX

> > > > Inc., in Texas. had been advised that it was the most

> > > > clinically accepted test available. The test came back

positive

> > and

> > > > began antibiotic treatment immediately. Her doctor

also

> > > > diagnosed her with Bartonella based on clinical observation,

> > which

> > > > involved a review of pictures and 's recounting of an

> > episode

> > > > of being bit by sand flies in March 2004 while vacationing in

the

> > > > Caribbean.

> > > >

> > > > Nine months after the diagnosis of Lyme and Bartonella,

> >

> > > > continues to improve. She has resumed her business and

continues

> > to

> > > > strive toward a complete recovery while dealing with

lingering

> > > > systems such as cold hands and feet, ringing in the ears and

> > tiring

> > > > more easily.

> > > >

> > > > Although she is significantly improved, still

> > requires

> > > > ongoing medical treatment.

> > > >

> > > > " I need to take several types of antibiotics to ensure

that

> > I

> > > > totally wipe out all forms of the Lyme bacteria in my system.

I

> > > also

> > > > take a lot of supplements aimed at fighting Lyme disease, "

said

> > > > .

> > > >

> > > > According to , she also took an antibiotic called

> > > > Rifampin that was used specifically to treat Bartonella. " How

one

> > > > responds to an

> > > > antibiotic is also an excellent indicator of which type of

> > diseases

> > > > one

> > > > has, " said .

> > > >

> > > > Along with the ongoing antibiotic treatment, she

continues

> > to

> > > > have a phone consultation with her Lyme doctor every four to

six

> > > > months and yearly visits. She also continues to have regular

lab

> > > work

> > > > done at a local clinic, which is faxed to the Missouri

physician,

> > > to

> > > > ensure there are no negative side effects from the long-term

> > > > antibiotic usage.

> > > >

> > > > Upon looking back, feels that the diseases have

> > > changed

> > > > her life.

> > > >

> > > > " Mike, Madelyn and my mom came through for me and they

> > proved

> > > > to be my saviors. I was also very surprised at other family

> > members

> > > > and friends who were there for me and so wonderful. I now

> > > personally

> > > > have much more awareness of others around me who have special

> > > needs, "

> > > > said . " I feel less concerned about the day-to-day

stuff

> > and

> > > > know that it will all work out. I try to remember on a daily

> > basis

> > > > how far I have come and how lucky I am to be walking around

and

> > > just

> > > > doing the small stuff. "

> > > >

> > > >

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

----

> > --

> > > --

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

> > > > Copyright © 2005. Sun Newspapers

> > > >

> > >

> >

>

[Guest guest]

Good information, a. Where does Dr. practice? I

need a new doctor because my doctor uses Lab Corp to do Lyme tests.

Vickie

>

> Hi Vickie,

> Now I get to show my ignorance. I'm not finding Igenex's

explanation

> of their reverse western blot. I THINK the reverse western blot is

a

> western blot on the antigen found in the urine to be sure it is

> borrelia. They have a nice explanation of the urine test, but they

> don't indicate that you SHOULD be on antibiotics the week of the

> urine test. My understanding is that the urine antigen test with

the

> reverse western blot is about as definitive a test as you can get,

> except maybe for Lida Matman's work at Bowen Lab.

>

> The reason I say this is because my son who has Lyme went to Dr.

> for testing and treatment, and that is basically what

> told him. BTW my husband, one son, and I are all positive

for

> Lyme.

>

> Here is the simple quote from IgeneX. They suggest a PCR for

> borrelia. However, I think PCRs of blood are questionable given

that

> borrelia do not stay in peripheral blood much.

>

> Based on our tracking, as well as input from our client physicians

> and our clinical consultant, the initial tests to order for Lyme

> disease are the IGeneX IgM and IgG Western Blot and PCRs. The

Western

> Blots are used to determine if the patient is making antibodies.

> Since some patients do not make antibodies, the Lyme Serum PCR for

> DNA (# 453) or the Lyme Whole Blood PCR for DNA (# 456) is included

> in the initial panel.

>

> Thus, the Initial Lyme Panel includes both Western Blots and your

> choice of PCR:

>

> Panel 5000:

> #s 188, 189 & 453 (PCR—serum)

> Panel 5010:

> #s188, 189 & 456 (PCR—whole blood)

> If the above panel is negative, the follow-up test for Lyme disease

> is the Lyme Dot Blot / PCR Panel # 875. This panel looks for pieces

> of the bacteria in urine as well as the DNA of Lyme in the urine.

> Most physicians use an antibiotic challenge to make the test more

> sensitive. The antibiotic protocol, as well as the general

> instructions, can be found in the urine testing kit available from

> the laboratory. You may also call IGeneX for a copy.

>

> The combination of all of the above tests provides higher than 90%

> sensitivity and better than 95% specificity. Remember that Lyme

> disease is a clinical diagnosis and testing can support your

clinical

> presentation.

>

> We also offer tests for the common co-infections of Babesia,

> Ehrlichia, and Bartonella. These co-infections are seen in

> approximately 20% of the patients with Lyme disease. The usual

first

> tests to order for the co-infections are IFA antibody tests: # 200

> Babesia microti; # 203 or 206 Ehrlichia; and # 285 Bartonella. In

> Northern California, Oregon and Washington State, # 710 (Babesia WA-

> 1) is substituted for # 200 for Babesia antibodies. Panels have

been

> established for the Midwest/Eastern Region (Panel 5020), the

Western

> Region (Panel 5040), and the Southern Region (Panel 5050). The FISH

> test (# 640) is also used because it is a sensitive indicator of

> Babesia infection, even in the absence of antibodies.

>

> Test kits are available with shipping materials at no charge from

> IGeneX, Inc. Call 800.832.3200 or e-mail us at

> customerservice@i...

>

>

> >

> > a, would you clarify " reverse western blot done on any

positive

> > sample " . What is a reverse western blot? Thanks!!

>