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Doctors in the news media are saying this is an airborne variety...transmitted

through respiratory fluids (coughs, sneezes, etc.) and once those respiratory

fluids have dried, the contagion dies too...approximately 45 minutes after the

sneeze, cough or whatever. They are also saying you cannot get it from

ingesting meat products, including 'swine'. I'm not worried at all!

>

> Hi list,

> I just joined and I am eager to get on the road to better health. I seem to

take better care of my dogs then myself. Anyway, before I go search for my lab

work and ask questions I have one REAL concern at the moment. I had insisted to

be put on Armour against my Dr.'s recommendations because all he ever prescribed

was Synthroid. So he finally gave in and now I'm concerned about this swine flu

thing and having pills that come pigs. Should I be concerned?

>

>

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Guest guest

I would personally ask the pharmacy for further information.

Labs such as Quantum list it on their website:

http://healthproducts-usa.com/30secrets.htm

" Infectious Prion Exposure "

Animal-based organ and glandular products (from commercial animals) carry

the risk of infectious prion contamination exposure as well as a greatly

increased burden on the kidney and liver to metabolize them. Great concern

and fear over " mad cow " disease, which causes spongiform encephalopathy in

humans, has now been reported in animals around the world, including the

U.S. Recently, mass animal exterminations have been carried out in numerous

locations worldwide in an attempt to curtail outbreaks of the disease. In

the U.S., the USDA ordered mass exterminations on two sheep farms in Vermont

(March, 2001) for fear of spread of the disease to other animals and humans.

Products made with constituents from commercial animals (such as organs and

glands) now carry the risk of contaminations with toxic prions (infective

particles which transmit the disease).

The Answer: Due to the widespread risk of prion contamination in commercial

animals, the wisest advice is to avoid nutritional products made with

constituents from commercial animals (including beef, sheep and pork) as

well as avoiding gelatin capsules made from hooves of commercial animals.

QNL is the first company to design effective nutritional products that can

target and strengthen a specific organ or gland in the human body without

using animal by-products, thus avoiding the risk of prion contamination.

QNL's unique organ and gland complexes are made with 100% grade 10 herbal

and food concentrates and presents a novel approach to target and transport

nutrients critical to the body's own healing and recovery systems.

A great benefit of this targeted approach is that a specific organ complex

can be coupled with another agent, such as an anti-infective herb, so that

it can be targeted directly to the same organ. As an example of this

targeting approach, Premier Heart Complex, a product used to strengthen the

heart, can be taken together with Premier Oleuropein, an anti-infective

herbal complex featuring Italian olive leaf extract. Taken together, the

anti-infective nutrients can also be targeted to the heart. Similarly, any

other powerful anti-infective agent could be targeted to the desired organ

or gland systems.

Another threat of prion exposure is from animal-derived digestive enzymes

which may also contain other toxic tag-along chemicals. In contrast, QNL

uses 100% pure, non-animal digestive enzymes (called Quantum Digest), which

are specially derived from aspergillus. Unlike other enzyme sources, our

enzymes are ultra-purified and filtered by special Japanese technology (not

available in the U.S.), so they are 100% free of fungal residue -- a common

problem in other enzyme products which can elicit allergic-type reactions.

QNL's unique enzyme process uses no heat, which ensures the enzymes are

fully biologically active over the broadest range of gastrointestinal pH

exposure -- a feature starkly missing in enzyme products extracted with

heat.

Quantum Lab products are made without the use of toxic tagalongs such as

magnesium stearate (hydrogenated oil), calcium stearate (hydrogenated oil),

stearic acid (hydrogenated oil), silicon dioxide (common sand), talcum

powder (a suspected carcinogen) and other toxic tableting agents or gelatin

capsules (made from cow hooves).

_____

From: hypothyroidism [mailto:hypothyroidism ]

On Behalf Of Roni Molin

Sent: Monday, April 27, 2009 11:43 PM

hypothyroidism

Subject: RE: New member

How would I know where they are harvested? I get mine from the pharmacy.

Roni

<>Just because something

isn't seen doesn't mean it's

not there<>

From: Banta <healthreflection@

<mailto:healthreflection%40fbcom.net> fbcom.net>

Subject: RE: New member

hypothyroidism@ <mailto:hypothyroidism%40>

Date: Monday, April 27, 2009, 9:08 PM

Depends on how and where the organs were harvested. if it says China. run!

You may want to consider

http://healthproduc <http://healthproducts-usa.com/30thyroidcomplexinfo.htm>

ts-usa.com/30thyroidcomplexinfo.htm

_____

From: hypothyroidism@ <mailto:hypothyroidism%40>

[mailto:hypothyroidism@

<mailto:hypothyroidism%40> ]

On Behalf Of beaucerongirl101

Sent: Sunday, April 26, 2009 1:12 PM

hypothyroidism@ <mailto:hypothyroidism%40>

Subject: New member

Hi list,

I just joined and I am eager to get on the road to better health. I seem to

take better care of my dogs then myself. Anyway, before I go search for my

lab work and ask questions I have one REAL concern at the moment. I had

insisted to be put on Armour against my Dr.'s recommendations because all he

ever prescribed was Synthroid. So he finally gave in and now I'm concerned

about this swine flu thing and having pills that come pigs. Should I be

concerned?

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Guest guest

Roni,

You wrote:

>

> Wow, I never thought of that. Chuck, what do you think?

Doubtful. The animals are inspected and certified free of common

infectious agents. Dr. Lowe recently posted an explanation about this on

his web site. They would be more worried about the bacon and ham, so the

parts selected for Armour should be well screened.

The bug causing all the trouble is being transmitted by humans, although

it started with pigs.

Chuck

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Guest guest

Well, that's a relief.

Roni

<>Just because something

isn't seen doesn't mean it's

not there<>

>

> Wow, I never thought of that. Chuck, what do you think?

Doubtful. The animals are inspected and certified free of common

infectious agents. Dr. Lowe recently posted an explanation about this on

his web site. They would be more worried about the bacon and ham, so the

parts selected for Armour should be well screened.

The bug causing all the trouble is being transmitted by humans, although

it started with pigs.

Chuck

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

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  • 3 months later...
Guest guest

Lucia,

You wrote:

>

> My problem is that I have a few micro nodules on my thyroid and the

> doctor put me on Euthyrox of 25 mg, each morning. I do not like how the

> medication makes me feel ....

Please share the specific test results with reference ranges, as these

vary between labs. " Normal " is so vague as to be meaningless.

Euthyrox is a generic for Synthroid (levothyroxine, synthetic T4), which

is made by Merck (Germany) but sold world wide.

A 25 mcg per day dose is pretty minimal. If it is causing hyperthyroid

symptoms, please tell your doctor immediately. Ordinarily, +/- 25 mcg

could not be life threatening, but the problem may actually be in the

nodules rather than the medication. This will depend on whether they are

producing or not. Unfortunately, telling the difference can require a

fairly involved test (radioactive iodine uptake).

My son went through all of this just a few months ago. His nodules were

found to be benign and not producing, so he is now on 37 mcg. His test

results were all in the " normal " range, both before and after treatment.

Please be specific.

Chuck

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Guest guest

Hi, Lucia. Two things:

1] 25 mcg is so low I'm surprised you can even detect it;

2] If anyone ever finds any credible research that shows any beneficial

results for any homeopathic remedy greater than chance or placebo I'd

appreciate a link.

Luck,

..

..

> Posted by: " Lucia " lucia_n36@...

> <mailto:lucia_n36@...?Subject=%20Re%3ANew%20Member>

> lucia_n36 <lucia_n36>

>

>

> Thu Jul 30, 2009 8:33 pm (PDT)

>

>

>

> I would like to say a few words to thank you for having me here, in

> this group. I was sent here by someone on another group and I am glad

> I found you.

> My problem is that I have a few micro nodules on my thyroid and the

> doctor put me on Euthyrox of 25 mg, each morning. I do not like how

> the medication makes me feel and I would like to find some alternative

> remedies. I mention that according to my blood tests my thyroid

> funtions normally. My question is: is this medicine necessary for me

> to take? I would like to use some homeopathic remedies. Any suggestion?

> Be well,

> Lucia

> P.S. I am 57 years old.

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  • 1 month later...

,

I'm so sorry about the Dx you've gotten! And at such a young, promising age! My

youngest son is your age, and I know this must be hell for your parents, too.

Have you been given a treatment plan yet, to prolong your ability to stay out of

the chair? Or does anything you do have a chance of making a difference? I don't

know much about MSA, so these may seem goofy questions.

I'll be wishing you well, and am glad you're here. Please pass along a good word

to your parents, too. It sounds as though they love you very much and want to

help in any way they can, which is what good parents always try to do.

All best,

>

> Hi there

>  

> I am new to this group i thought i would do a intro well My name is i am

19 years olod i live in Manchester in England about a year ago mum and dad

noticed something was not right with me i was always getting tired and i would

find it hard walking. After and few weeks mum and dad said i should go and see a

doctor i have been under going lots and lots of tests last month i was

digeniosed with SMA.

> (This is a clip off the internet)

>  Spinal muscular atrophy (SMA) is a genetic disease that affects muscle

movement. It causes the motor neurons in an area of the spinal cord called the

anterior horn to deteriorate. Motor neurons are nerve cells in the spinal cord

that send impulses to the muscles, telling them to expand or contract. The

deterioration of the motor neurons gradually breaks the link between the brain

and the muscles that this part of the spinal cord controls. As the link is

broken, the muscles - used for activities such as crawling, walking, sitting up

and moving the head - are used less and less and so become weaker, or shrink

(atrophy).

>  

> So the outlook is not that good for me so i have come on hear to meet people

and make friends i will need long term care in a few months mum and dad are

planing and makeing a bigger room for me downstaris now i have started to have

mussle weakness all ready i am in diapers and have no bladder or bowle controll.

I will need to have a wheelchair i have a old one at the moment but mum and dad

are going to get a very good one that will help me get around. Mum and dad are

very suppotive to me and look after me very well. Please feal free to IM me on

l Messanger and we can chat. Thanks

>  

>  

>

>

>

>

>

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Welcome, Meredith. I've found this group to be a great resource for both

information and support. How long do you think you've had lyme? And most

probably many or most of the " unexplained " symptoms can definitely be

explained by lyme. Knee problems are very common, muscle/joint

pain/weakness as well as a whole host of other symptoms - which vary from

person to person. Is your doc an llmd (lyme literate medical doctor)? How

were you dx'd with lyme? Pardon all the questions - I'm just curious since

all of us come at it from different places.

On Sun, Sep 27, 2009 at 7:55 PM, no longer a fan <merlodge@...> wrote:

>

>

> I am a new member. I was dx Fri with lyme. I do not know anything more than

> that.

>

> I have a long list of disgnosed things (water on the knee, achilles

> tendonitis and so much more...) without causes and I wonder if now the cause

> has been found.

>

> I am very overwhelmed by all the info out there but I am ok with that. I

> will become more familiar and I will figure it all out. First I have to find

> out what I exactly have or the blood work has showed. I am thankful for this

> group.

>

> Thanks,

>

> Meredith

>

>

>

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  • 2 months later...

Allan,

Hate to be the bearer of bad news, but the surgeon is most likely telling

you the truth. Do you recall if he used the term myolapathy? My husband

had 3 opinions before we finally believed what the Dr's were saying. When

the cervical spine is severely compressed, there is no other option than

surgery.

The good news is, an anterior ACDF isn't that bad of a surgery. Get more

opinions before getting the laminectomy. That surgery is more painful and

a couple Doctors said it was an " old fashioned " way of taking care of the

problem.

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In a message dated 12/13/2009 9:28:29 A.M. Eastern Standard Time,

vendetta33@... writes:

My surgeon told me the same thing about being in an auto accident, but

said it after surgery. I don't drive much since it increases my pain, and

being a passenger is even worse, but I am still aware of that warning all the

time.

My husband was told to have the surgery so he would not become paralyzed.

I thought once the surgery is done, the risk is over.

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Welcome, Alan.

I agree with rinninwind: if the surgeon mentioned mylopathy, you shouldn't wait

too long. Getting a second opinion is a good idea, but if mylopathy is involved,

progressive (and permanent) damage can occur. I'm guessing the issues are

complex enough that they can't get at them all with just one surgery or from the

anterior approach?

I've only had a diskectomy/laminectomy at C6-7, so don't have any fusion

experience to share; surgeon didn't want to do it because I was " too young " at

the time (38). It's true that laminectomy has quite a long recovery time, in my

own experience. Cutting through the muscle is no small issue to deal with; I

wasn't allowed to lift more than 5lbs for several months. 3.5 years post surgery

and I've again got disc bulging, arthritis and nerve impingement in the same

places as were operated on (some not as severe yet, some worse, some exactly the

same as before) so am dealing with quite a bit of nerve pain myself in addition

to arthritis/disc pain. Fusion might prevent all that, though other members here

could better address that.

My surgeon told me the same thing about being in an auto accident, but said it

after surgery. I don't drive much since it increases my pain, and being a

passenger is even worse, but I am still aware of that warning all the time.

I wonder if, like some other folks, you'll get lower back relief when your neck

is taken care of. It happens to some... You didn't mention what issues you have

in your lumbar spine. Anything you'd want to share?

Anyway, welcome to the group, but sorry that you had need of it!

>

> Hello All,

>

> I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis.

Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae,

then come back in some months and do cervical lamenectomy. He says my neck is

too screwed up to consider lumbar surgery at this time - says there's spinal

cord constriction in the neck and it's so bad that if i got in a minor car

accident i could be paralyzed.....

>

> I think he's too damned eager to operate! The pain seems reasonably manageable

with robaxin and vicoden.

>

> Any advice or experience is welcome.

>

> Alan

>

>

>

>

>

>

>

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Dear Group,

Approaching my 1 year fusion and determined to continue living my life I would

like to add that the most alarming part of your post Alan appears to me to be

about the I could be paralyzed part. Consider that part a little longer and then

educate yourself through legitimate sites on the good/bad and reasonable

expectations to your health. I'm a believer in working the problem and just ran

a 5K race this past October! Gook luck to all in our group.

> >

> > Hello All,

> >

> > I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis.

Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae,

then come back in some months and do cervical lamenectomy. He says my neck is

too screwed up to consider lumbar surgery at this time - says there's spinal

cord constriction in the neck and it's so bad that if i got in a minor car

accident i could be paralyzed.....

> >

> > I think he's too damned eager to operate! The pain seems reasonably

manageable with robaxin and vicoden.

> >

> > Any advice or experience is welcome.

> >

> > Alan

> >

> >

> >

> >

> >

> >

> >

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alan,

It's not clear what advice you are seeking.  It seems to me that you have

already made up your mind...perhaps, are you looking at convincing?  If

you sense that the doc is too eager to cut, then he probably is.  Trust your

gut!  You know more about your own body than any other person, including

specialized doctors. Stenosis doesn't happen overnight, so at your age, you've

been living a good amout of time with it.  Plus, you have found a simple way to

reasonably manage the pain.  Robaxin & Vicodin for stenosis?  This is

magnificant!  So then exactly what is the rush?  Continue to take the time to

make an informed decision.  That is, if you need to decide something.  If I

was in your position, I would not need to decide anything.  I would just

continue with those meds.  I probably wouldn't have even gone to a

neurosurgeon if I was being reasonably treated by a general practicioner.

dave  

________________________________

From: Alan <alrond999@...>

spinal problems

Sent: Sat, December 12, 2009 4:48:13 PM

Subject: New Member

 

Hello All,

I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis.

Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae,

then come back in some months and do cervical lamenectomy. He says my neck is

too screwed up to consider lumbar surgery at this time - says there's spinal

cord constriction in the neck and it's so bad that if i got in a minor car

accident i could be paralyzed... ..

I think he's too damned eager to operate! The pain seems reasonably manageable

with robaxin and vicoden.

Any advice or experience is welcome.

Alan

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In my case it was because of other issues with my neck that weren't addressed by

the surgery. I only had one level worked on. My guess is that your husband had

some progressive myelopathy, right? That does need to be taken care of right

away.

I have a not so wonderful complex of situations in my neck that contribute to

the warning I got to be careful. Loss of lordosis and scoliosis are two

contributors, along with prominent spurring in a few places. I also have a

movement disorder that causes constantly spasmed muscles and also adds to the

mix. At any rate, any one of us could be paralyzed in an auto accident, even

with a perfectly healthy spine--it's just worse odds in some of us.

Sorry I didn't explain it well before, or now. I'm not having a good time

sitting at PC lately and have been rushed to get back away from it. Pain is NOT

my friend!

All best,

p.s. Does anyone know where is? Seems like a very long time since she's

been around!

>

>

>

> In a message dated 12/13/2009 9:28:29 A.M. Eastern Standard Time,

> vendetta33@... writes:

>

> My surgeon told me the same thing about being in an auto accident, but

> said it after surgery. I don't drive much since it increases my pain, and

> being a passenger is even worse, but I am still aware of that warning all the

> time.

>

> My husband was told to have the surgery so he would not become paralyzed.

> I thought once the surgery is done, the risk is over.

>

>

>

>

>

>

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Hi. I went to see a doctor because my fingertip was getting a little numb.

Didn't have any pain to have to manage. Got referred to a very astute

neurologist who trotted me thru an MRI the same day I saw her. Had some spinal

stenosis. Was in surgery the next day. Stenosis was there because my neck was

BROKEN. I live a fairly quiet life, never had a neck injury- the vertebra just

fell apart, dunno why. The neurosurgeon, neurologist, and consulting

neurosurgeon all agreed that by the time I hit surgery, I prolly had less than

24 hours left before it all slid too far, even with the neck brace on. Would've

cut my spinal cord at the C3/4 level. Would've killed me.

I got a good look at my scan. They weren't lying.

Had a bunch of bits removed, a bunch of plates and screws, some donor bone

installed, a disc or two removed, some fusion.

I'm fine now, except for left hand being partially paralyzed. Sure beats what

almost happened.

Moral of my story:

This is serious. Don't piddle around with it too very long. Get it done while

you still have a chance.

LCB

>

> Hello All,

>

> I'm Alan. 60 years old. Diagnosed with lumbar and cervical stenosis.

Neurosurgeon wants to do neck surgery - remove old discs and fuse vertebrae,

then come back in some months and do cervical lamenectomy. He says my neck is

too screwed up to consider lumbar surgery at this time - says there's spinal

cord constriction in the neck and it's so bad that if i got in a minor car

accident i could be paralyzed.....

>

> I think he's too damned eager to operate! The pain seems reasonably manageable

with robaxin and vicoden.

>

> Any advice or experience is welcome.

>

> Alan

>

>

>

>

>

>

>

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  • 3 weeks later...

: Welcome to our little corner of hell! Seriously, you're in for a longer,

stranger trip than you probably realize right now. The good news is that there

are a lot of people here who've walked that path, and I think most of us would

say that we'd never have made it if it weren't for what we learned here.

A few things you need to know right off...

The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very

probably directly caused by the Lyme, and will likely clear up when the Lyme is

properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and

different but similar autoimmune issues that all abated with treatment.)

The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

You need information, and you need it now. Books to acquire include:

Cure Unknown

10 Best Lyme Disease Treatments

Everything You Need to Know about Living With Lyme Disease

And a video:

Under Our Skin

Websites to consult now:

<http://www.lisasimone.net/images/pdfs/B_guidelines_12_17_08.pdf>

<http://www.ilads.org/>

<www.calda.org>

Holler with any questions. We're here with an ear.

Sara

On Jan 3, 2010, at 4:31 13PM, wrote:

> I was recently told that I tested positive for Lyme Disease and Lupus

according to the blood test results done by mt orthopedic doctor. I go to see a

rheumatologist this coming Friday. He said that the Lyme test came back 3 out of

9 positive. Can anyone explain that to me? I can't seem to find much on the web

and I find it kind of hard to believe that I have both. Just a little background

on me. I just turned 30 in late November. I am married and have a 3 year old

son. I live in CT. I also was diagnosed with cardiomyopathy July of theis year

and postural orthostatic tachycardia syndrome last month.

>

>

>

>

>

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

>

> 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

>

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Thanks so much. Your email actually has brought great relief to know that maybe

all of my problems could have one answer. I was in good health until one day

when I had some chest pain then it went into my shoulder and neck. I thought

this can't be just stress. I found out that I had pericarditis and then they

found the cardiomyopathy. Thinking back July of 2008 I went to the ER for what

they said was a " spider bite " I had severe inflamation for a bite to my elbow

that was about 10-12 inches long. I had a 103 fever and a heart rate of 170.

Maybe that was actually a tick bite. I guess I will never know. I moved from the

city to a small town called Wolcott. We do have quite a bit of ticks out here.

Lots of deer and wooded areas. I already see that this group will be alot of

comfort!

 

Thanks

From: Sara <srobinson@...>

Subject: Re: [ ] new member

Date: Sunday, January 3, 2010, 8:36 PM

 

: Welcome to our little corner of hell! Seriously, you're in for a longer,

stranger trip than you probably realize right now. The good news is that there

are a lot of people here who've walked that path, and I think most of us would

say that we'd never have made it if it weren't for what we learned here.

A few things you need to know right off...

The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all very

probably directly caused by the Lyme, and will likely clear up when the Lyme is

properly treated. (Personal experience speaking: I had cardiomyopathy, POTS, and

different but similar autoimmune issues that all abated with treatment.)

The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

You need information, and you need it now. Books to acquire include:

Cure Unknown

10 Best Lyme Disease Treatments

Everything You Need to Know about Living With Lyme Disease

And a video:

Under Our Skin

Websites to consult now:

<http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

<http://www.ilads. org/>

<www.calda.org>

Holler with any questions. We're here with an ear.

Sara

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, not sure on the test results, but I just wanted to say hi and good luck,

I have a 4 year old, and was diagnosed with lots of things before they found the

lymes, one of which is sinus tachycardia caused by lyme. Welcome, and good luck!

Bridget

>

> I was recently told that I tested positive for Lyme Disease and Lupus

according to the blood test results done by mt orthopedic doctor. I go to see a

rheumatologist this coming Friday. He said that the Lyme test came back 3 out of

9 positive. Can anyone explain that to me? I can't seem to find much on the web

and I find it kind of hard to believe that I have both. Just a little background

on me. I just turned 30 in late November. I am married and have a 3 year old

son. I live in CT. I also was diagnosed with cardiomyopathy July of theis year

and postural orthostatic tachycardia syndrome last month.

>

>

>

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Cardiac Lyme is common as dirt in patients who've had the disease for more than

a couple years -- it's one of the later of the late-stage symptoms. (For most

people who die of Lyme, congestive heart failure was a major contributing cause

of death.) The spirochete infects the myocardium, creating symptoms that are

virtually indistinguishable from diastolic congestive heart failure.

Unfortunately, most cardiologists aren't familiar with cardiac Lyme, and are

thus very confused when stress ECGs don't show the typical CHF left ventricle

stretching; and when angiograms show no blockages whatsoever. (This happened to

me.) You've got all the symptoms and disabilities; but none of the structural

causes that they expect to see. And yet the heart is misbehaving badly. All they

can do at that point is shrug and refer you to a shrink.

POTS is caused by Lyme's effects on the hypothalamus/pituitary/adrenal (HPA)

axis, which controls blood volume, among other things. Lyme loves the collagen

in all three structures, and a heavy infection will disrupt the body's ability

to maintain blood volume. By and by, you're literally running a quart low. This

makes the blood thicky and sticky, creating a host of circulation-related

problems; and that leads to the syncope and light-headedness of POTS. You just

don't have enough blood on board to feed your head while you're standing.

Lyme mimics Lupus because our immune systems up-regulate to vanquish the bug.

Unfortunately, since Lyme has several effective ways of hiding from the immune

system, our bodies will go into permanent overdrive trying to find it. This

up-regulation creates a host of autoimmune disorders, since a redlining immune

system will tend to get very stupid over time and start going after stuff it's

not supposed to -- stuff like routine foods and " safe " chemicals (creating food

allergies and MCS symptoms), our own organs (leading to hypothyroid and

hypoadrenal problems), and so on. To a doctor who doesn't know what Lyme looks

like, some of these symptoms can look very much like Lupus.

So, if you can clear the Lyme, you may see considerable progress on all these

fronts. I've been under treatment for 16 months, and both the cardiac symptoms

and the POTS were gone in the first three or four months. The autoimmune stuff

faded more slowly, but it's going away, too. Your mileage will no doubt vary;

but your Lyme diagnosis is actually a good reason to hold out hope that most of

this can eventually be managed or cured.

Sara

On Jan 3, 2010, at 7:30 09PM, Chiaravalloti wrote:

>

> Thanks so much. Your email actually has brought great relief to know that

maybe all of my problems could have one answer. I was in good health until one

day when I had some chest pain then it went into my shoulder and neck. I thought

this can't be just stress. I found out that I had pericarditis and then they

found the cardiomyopathy. Thinking back July of 2008 I went to the ER for what

they said was a " spider bite " I had severe inflamation for a bite to my elbow

that was about 10-12 inches long. I had a 103 fever and a heart rate of 170.

Maybe that was actually a tick bite. I guess I will never know. I moved from the

city to a small town called Wolcott. We do have quite a bit of ticks out here.

Lots of deer and wooded areas. I already see that this group will be alot of

comfort!

>

> Thanks

>

>

>

>

>

> From: Sara <srobinson@...>

> Subject: Re: [ ] new member

>

> Date: Sunday, January 3, 2010, 8:36 PM

>

>

>

>

>

>

> : Welcome to our little corner of hell! Seriously, you're in for a

longer, stranger trip than you probably realize right now. The good news is that

there are a lot of people here who've walked that path, and I think most of us

would say that we'd never have made it if it weren't for what we learned here.

>

> A few things you need to know right off...

>

> The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

>

> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all

very probably directly caused by the Lyme, and will likely clear up when the

Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy,

POTS, and different but similar autoimmune issues that all abated with

treatment.)

>

> The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

>

> You need information, and you need it now. Books to acquire include:

>

> Cure Unknown

> 10 Best Lyme Disease Treatments

> Everything You Need to Know about Living With Lyme Disease

>

> And a video:

> Under Our Skin

>

> Websites to consult now:

> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

> <http://www.ilads. org/>

> <www.calda.org>

>

> Holler with any questions. We're here with an ear.

>

> Sara

>

>

>

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

>

> 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

>

Link to comment
Share on other sites

Thank you for this email.  It was very helpful. 

I went through cardiac testing because of my persistent tachycardia & high blood

pressure.  I was so frustrated.  The cardiologists didn't know what was wrong

and said it was probably POTS.  Then the cardiologist said it might be sinus

tachycardia.   Anyway, my LLMD put me on IV Rocephin last week and amazingly my

blood pressure has been normal for the past few days and I haven't

had tachycardia.  My family even said that my face wasn't as swollen as it was

the week before.  It was like someone turned on a light and my heart wasn't

racing anymore.  I have had fluctuating high blood pressure and tachycardia for

2 years while on blood pressure medication.   Keep on your journey...it will get

better.

   Ann

________________________________

From: Sara <srobinson@...>

Sent: Mon, January 4, 2010 11:33:38 AM

Subject: Re: [ ] new member

Cardiac Lyme is common as dirt in patients who've had the disease for more than

a couple years -- it's one of the later of the late-stage symptoms. (For most

people who die of Lyme, congestive heart failure was a major contributing cause

of death.) The spirochete infects the myocardium, creating symptoms that are

virtually indistinguishable from diastolic congestive heart failure.

Unfortunately, most cardiologists aren't familiar with cardiac Lyme, and are

thus very confused when stress ECGs don't show the typical CHF left ventricle

stretching; and when angiograms show no blockages whatsoever. (This happened to

me.)  You've got all the symptoms and disabilities; but none of the structural

causes that they expect to see. And yet the heart is misbehaving badly. All they

can do at that point is shrug and refer you to a shrink.

POTS is caused by Lyme's effects on the hypothalamus/pituitary/adrenal (HPA)

axis, which controls blood volume, among other things. Lyme loves the collagen

in all three structures, and a heavy infection will disrupt the body's ability

to maintain blood volume. By and by, you're literally running a quart low. This

makes the blood thicky and sticky, creating a host of circulation-related

problems; and that leads to the syncope and light-headedness of POTS. You just

don't have enough blood on board to feed your head while you're standing.

Lyme mimics Lupus because our immune systems up-regulate to vanquish the bug.

Unfortunately, since Lyme has several effective ways of hiding from the immune

system, our bodies will go into permanent overdrive trying to find it. This

up-regulation creates a host of autoimmune disorders, since a redlining immune

system will tend to get very stupid over time and start going after stuff it's

not supposed to -- stuff like routine foods and " safe " chemicals (creating food

allergies and MCS symptoms), our own organs (leading to hypothyroid and

hypoadrenal problems), and so on. To a doctor who doesn't know what Lyme looks

like, some of these symptoms can look very much like Lupus.

So, if you can clear the Lyme, you may see considerable progress on all these

fronts. I've been under treatment for 16 months, and both the cardiac symptoms

and the POTS were gone in the first three or four months. The autoimmune stuff

faded more slowly, but it's going away, too. Your mileage will no doubt vary;

but your Lyme diagnosis is actually a good reason to hold out hope that most of

this can eventually be managed or cured.

Sara

On Jan 3, 2010, at 7:30 09PM, Chiaravalloti wrote:

> 

> Thanks so much. Your email actually has brought great relief to know that

maybe all of my problems could have one answer. I was in good health until one

day when I had some chest pain then it went into my shoulder and neck. I thought

this can't be just stress. I found out that I had pericarditis and then they

found the cardiomyopathy. Thinking back July of 2008 I went to the ER for what

they said was a " spider bite " I had severe inflamation for a bite to my elbow

that was about 10-12 inches long. I had a 103 fever and a heart rate of 170.

Maybe that was actually a tick bite. I guess I will never know. I moved from the

city to a small town called Wolcott. We do have quite a bit of ticks out here.

Lots of deer and wooded areas. I already see that this group will be alot of

comfort!

> 

> Thanks

>

>

>

>

>

> From: Sara <srobinson@...>

> Subject: Re: [ ] new member

>

> Date: Sunday, January 3, 2010, 8:36 PM

>

>

> 

>

>

>

> : Welcome to our little corner of hell! Seriously, you're in for a

longer, stranger trip than you probably realize right now. The good news is that

there are a lot of people here who've walked that path, and I think most of us

would say that we'd never have made it if it weren't for what we learned here.

>

> A few things you need to know right off...

>

> The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

>

> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all

very probably directly caused by the Lyme, and will likely clear up when the

Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy,

POTS, and different but similar autoimmune issues that all abated with

treatment.)

>

> The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

>

> You need information, and you need it now. Books to acquire include:

>

> Cure Unknown

> 10 Best Lyme Disease Treatments

> Everything You Need to Know about Living With Lyme Disease

>

> And a video:

> Under Our Skin

>

> Websites to consult now:

> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

> <http://www.ilads. org/>

> <www.calda.org>

>

> Holler with any questions. We're here with an ear.

>

> Sara

>

>

>

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

>

> 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

>

Link to comment
Share on other sites

Thanks so much. So do you think that a rheumatologist won't know enough?

>

>

> From: Sara <srobinson@cosmiccow grrl.com>

> Subject: Re: [ ] new member

> @group s.com

> Date: Sunday, January 3, 2010, 8:36 PM

>

>

>

>

>

>

> : Welcome to our little corner of hell! Seriously, you're in for a

longer, stranger trip than you probably realize right now. The good news is that

there are a lot of people here who've walked that path, and I think most of us

would say that we'd never have made it if it weren't for what we learned here.

>

> A few things you need to know right off...

>

> The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

>

> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all

very probably directly caused by the Lyme, and will likely clear up when the

Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy,

POTS, and different but similar autoimmune issues that all abated with

treatment.)

>

> The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

>

> You need information, and you need it now. Books to acquire include:

>

> Cure Unknown

> 10 Best Lyme Disease Treatments

> Everything You Need to Know about Living With Lyme Disease

>

> And a video:

> Under Our Skin

>

> Websites to consult now:

> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

> <http://www.ilads. org/>

> <www.calda.org>

>

> Holler with any questions. We're here with an ear.

>

> Sara

>

>

>

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

>

> 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

>

Link to comment
Share on other sites

Rheumatologists see plenty of Lyme arthritis, and many of them do recognize it

when they see it. But most of them only know what a rheumatologist needs to

know, which is pretty limited. They are by no means specialists in treating the

disease -- for that, you need someone for whom Lyme is their first and only

specialty.

(Note that this criterion also lets out traditional infectious disease doctors,

who also have a very limited view of the disease.)

Lyme is multi-systemic, which means that any of these doctors is like one of the

blind men feeling the elephant. They only know about the part they're grasping.

LLMDs, on the other hand, see the whole elephant -- and that's why we're pretty

emphatic here that you need to get yourself in to see one, and soon.

Sara

On Jan 4, 2010, at 3:30 37PM, Chiaravalloti wrote:

> Thanks so much. So do you think that a rheumatologist won't know enough?

>

>

>>

>>

>> From: Sara <srobinson@cosmiccow grrl.com>

>> Subject: Re: [ ] new member

>> @group s.com

>> Date: Sunday, January 3, 2010, 8:36 PM

>>

>>

>>

>>

>>

>>

>> : Welcome to our little corner of hell! Seriously, you're in for a

longer, stranger trip than you probably realize right now. The good news is that

there are a lot of people here who've walked that path, and I think most of us

would say that we'd never have made it if it weren't for what we learned here.

>>

>> A few things you need to know right off...

>>

>> The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

>>

>> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all

very probably directly caused by the Lyme, and will likely clear up when the

Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy,

POTS, and different but similar autoimmune issues that all abated with

treatment.)

>>

>> The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

>>

>> You need information, and you need it now. Books to acquire include:

>>

>> Cure Unknown

>> 10 Best Lyme Disease Treatments

>> Everything You Need to Know about Living With Lyme Disease

>>

>> And a video:

>> Under Our Skin

>>

>> Websites to consult now:

>> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

>> <http://www.ilads. org/>

>> <www.calda.org>

>>

>> Holler with any questions. We're here with an ear.

>>

>> Sara

>>

>>

>>

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

>>

>> 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

>>

Link to comment
Share on other sites

Sara,

You have a wonderful way of explaining things, as usual! I wanted to second

your comment about the cardiac and POTS stuff occuring earlier in treatment. I

also have been in treatment for 16 months and my cardiac symptoms were all in

the first 3 months of treatment. I did relapse last August and for a couple

months the lightheadedness came back for a couple weeks but the tachycardia did

not return, thankfully. Its one thing to deal with all these Lyme symptoms but

when it starts messing with your heart its scary!

-

Re: [ ] new member

://.

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Share on other sites

My 14 year old daughter has been going to a rheumatologist (sp sorry) for the

last five years or so at the Children's Hosp - she was diagnosed with JRA back

five years ago - he called himself a lyme guru - what ever that means - BUT and

please listen closely - he told me that my daughter doesn't have lyme even

though her tests came back positive...........he is so against lyme it's scary -

what I think is going on is that why treat lyme when you can keep these kids on

meds that are to help the JRA but not treat what is really going on with

them...........I deal with this first hand and have been for over five years -

my daughter is now being treated for chronic lyme that I have her through birth

and now her " JRA " is doing very good - under control!  You can try and deal

with them but the one I deal with feels that he is much to smart than me -

especially when it comes to lyme disease and it all in our head so to say -

Good Luck - -just giving you the truth :(

Diane

________________________________

From: Chiaravalloti <tscollo@...>

Sent: Mon, January 4, 2010 5:30:37 PM

Subject: Re: [ ] new member

 

Thanks so much. So do you think that a rheumatologist won't know enough?

>

>

> From: Sara <srobinson@cosmicco w grrl.com>

> Subject: Re: [ ] new member

> @group s.com

> Date: Sunday, January 3, 2010, 8:36 PM

>

>

>

>

>

>

> : Welcome to our little corner of hell! Seriously, you're in for a

longer, stranger trip than you probably realize right now. The good news is that

there are a lot of people here who've walked that path, and I think most of us

would say that we'd never have made it if it weren't for what we learned here.

>

> A few things you need to know right off...

>

> The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

>

> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all

very probably directly caused by the Lyme, and will likely clear up when the

Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy,

POTS, and different but similar autoimmune issues that all abated with

treatment.)

>

> The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

>

> You need information, and you need it now. Books to acquire include:

>

> Cure Unknown

> 10 Best Lyme Disease Treatments

> Everything You Need to Know about Living With Lyme Disease

>

> And a video:

> Under Our Skin

>

> Websites to consult now:

> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

> <http://www.ilads. org/>

> <www.calda.org>

>

> Holler with any questions. We're here with an ear.

>

> Sara

>

>

>

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

>

> 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

>

Link to comment
Share on other sites

Diane, thats too bad. i did hear that there is a MD part of the unbelieving

group, doing the same sort of thing, and I wonder if its the same doctor. I'm

sorry that happened, thats horrible! i feel bad for your daughter too, as I'm 14

and have been told it was fibromayalgia by a very cruel, and mean, and senseless

rhuematologist....

Elaina

>

>

> From: Sara <srobinson@cosmicco w grrl.com>

> Subject: Re: [ ] new member

> @group s.com

> Date: Sunday, January 3, 2010, 8:36 PM

>

>

>

>

>

>

> : Welcome to our little corner of hell! Seriously, you're in for a

longer, stranger trip than you probably realize right now. The good news is that

there are a lot of people here who've walked that path, and I think most of us

would say that we'd never have made it if it weren't for what we learned here.

>

> A few things you need to know right off...

>

> The bad news -- the worst of all -- is that your orthopedist and your

rheumatologist will not, in all likelihood, know the first thing about curing

your Lyme. They will give you a month of a single antibiotic, which almost

certainly won't do the job (I can say this with some certainty because you have

clear symptoms of both neurological and cardiac Lyme, which indicates that

you've had it a good long while, and it's entrenched itself deeply in your

system). You need to locate a Lyme-literate doctor, preferably one who is a

member of ILADS, who will undertake the comprehensive treatment needed to really

manage and shake off the disease. And because Lyme is a deeply political

disease, these doctors typically don't take insurance, so this is going to run

to some money.

>

> The good news is that your Lupus symptoms, cardiomyopathy, and POTS are all

very probably directly caused by the Lyme, and will likely clear up when the

Lyme is properly treated. (Personal experience speaking: I had cardiomyopathy,

POTS, and different but similar autoimmune issues that all abated with

treatment.)

>

> The " 3 out of 9 " was probably a reference to the bands on your Western Blot

test. There are nine bands that indicate the presence of Lyme; you lit up on

three of them. Some of these bands are more clearly indicative than others;

obviously, at least one or two of the ones on your test were very strong

indicators.

>

> You need information, and you need it now. Books to acquire include:

>

> Cure Unknown

> 10 Best Lyme Disease Treatments

> Everything You Need to Know about Living With Lyme Disease

>

> And a video:

> Under Our Skin

>

> Websites to consult now:

> <http://www.lisasimo ne.net/images/ pdfs/B_guideline s_12_17_08. pdf>

> <http://www.ilads. org/>

> <www.calda.org>

>

> Holler with any questions. We're here with an ear.

>

> Sara

>

>

>

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

>

> 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

>

Link to comment
Share on other sites

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