Re: New and Need to Know

September 24, 2008

If it where me I would immediately start the Salt/C protocol found at the

lymestrategies group website. It has helped my wife tremendously and

is very inexpensive and can be done while you are on antibiotics or any

regimen.

Again I do not believe there is really a disease Fibromyalgia. Read the book

at the on then end of this post or see the movie. Start educating yourself

or you will get worse.

> [ ] New and Need to Know

>

> Background...Had spinal fusion in 2000 of L5-S1 vertebrae from a car

> accident and have Fibromyalgia. In April 2008 was bit by something and

> had a small bulls-eye rash, didn't think anything of it as I am not

> originally from the southeast and never heard of Lyme Disease. Thought

> it was a spider bite of some sort.

>

> In May I got the foggy brain syndrome but thought that was due to the

> Lyrica I was just starting to take for the Fibromyalgia. At the end of

> May woke up with left knee, right elbow and back aching, doctor sent

> me to chiropractor a few times and I started to get numbness and

> tingling in my hands and feet, so I blamed it on the chiropractor. In

> the beginning of June both knees swelled up and were so excruciatingly

> painful and the doctor asked me if I was bit by a tick and not

> remembering that day about previous bite(foggy brain) said didn't

> think so. Went home and next day remembered bite. So following the

> Dr.s appointment did Lyme test and started Amoxicillan 1500 mg a day.

> The next week test came back negative and I stayed on ABX anyway. Got

> to reading about Lyme and then upped ABX to 3000mg a day after 3

> weeks. Then after another 3 weeks went to a support group and upped

> ABX to 4500mg a day. I also take a ton of supplements and other meds.

> I do have about 80% of the listed symptoms of Lyme Disease.

>

> So about end of July having searing pain in right should and cannot

> lift arm, almost useless. Both knees are just giving me, hell at times

> cannot walk. The doc sends me to a rheumatologist. Which I didn't get

> to see until September. She orders MRI on shoulder, Lyme test, Lupus

> test and RA test. Doesn't bother with my knees. She does look at my

> regular x-rays and said they look ok but she also looked at my spinal

> x-rays and said looked like I may need fusion at L2-L3 and C5-C6. She

> also took me off of Celebrex (which was working) and put me on

> Mobic(which did nothing but show me how much pain I really was in)I

> went back on the Celebrex.

>

> So here lies my problem...I put off going back to my regular doctor by

> a week til after I was going to Rheumatologist for results. Going to

> go same day to kill 2 birds as gas prices sooo high. He canceled, is

> out of town for the week...I am out of Vicoprofen, ABX and sleeping

> pills. So I go to Rheumatologist and she says Lyme test negative,

> Lupus negative, RA negative. MRI show my shoulder is pretty much

> shredded and needs surgery. She is sending me back to my Orthopedic

> surgeon to look at my shoulder, spine and knees. She then changed me

> off of Celebrex again to Relafen and gave me Vicoprofen. Told me my

> sleeping pills and ABX were between me and my other doctor. So I have

> been on ABX for just over 3 1/2 months, will being off of them for a

> week set me back any? or will it just give me a break? I am waiting

> for the first of November to come around so I can take a month or two

> off of work to switch to Doxycycline. Just afraid of herxing and

> working at the same time.

>

> Louise

September 24, 2008

I am so sorry you do not believe there is a disease called

fibromyalgia. I was diagnosed with this 10 years ago and I DO BELIEVE

there is a disease called FIBROMYALGIA. You should really do some

research on this yourself before you go around and nevermind, I do not

wish to push my beliefs onto you or anyone else as you do(seen in

other posts before too). And I do own my own copy of Under Our Skin.

But thank you for the info on the Salt/C protocol. I will do some

research into this. I have educated myself on Lyme Disease but I

haven't seen any info about stopping ABX treatment for a week or so

due to whatever reason, like mine, being my doctor is out of town and

not being able to get a refill.

>

> If it where me I would immediately start the Salt/C protocol found

at the

> lymestrategies group website. It has helped my wife

tremendously and

> is very inexpensive and can be done while you are on antibiotics or any

> regimen.

>

> Again I do not believe there is really a disease Fibromyalgia. Read

the book

> at the on then end of this post or see the movie. Start educating

yourself

> or you will get worse.

>

September 26, 2008

I am glad you have Under our Skin and I am assuming you watched it. The

movie is very good but does not come near to explaining the history of this

outbreak.

I really suggest you read the book " Cure Unknown Inside the Lyme Epidemic "

and see the history of Lyme and Fibromyalgia. The two are very much

interlinked. This book will really present a lot of fascinating data that

may help you understand your illness better.

> [ ] Re: New and Need to Know

>

> I am so sorry you do not believe there is a disease called

> fibromyalgia. I was diagnosed with this 10 years ago and I DO BELIEVE

> there is a disease called FIBROMYALGIA. You should really do some

> research on this yourself before you go around and nevermind, I do not

> wish to push my beliefs onto you or anyone else as you do(seen in

> other posts before too). And I do own my own copy of Under Our Skin.

> But thank you for the info on the Salt/C protocol. I will do some

> research into this. I have educated myself on Lyme Disease but I

> haven't seen any info about stopping ABX treatment for a week or so

> due to whatever reason, like mine, being my doctor is out of town and

> not being able to get a refill.

>

September 26, 2008

A comment on FMS:

If you have ever lived with severe FMS, than you understand

the " name " that is given to this set of symptoms. If you then

learned that what you were told was " FMS " was really Lyme, and that

all the FMS symptoms are ALSO Lyme symptoms, it certainly would lead

a person to believe that ALL FMS is LYME.

Now, I have Lyme. I have had severe " FMS " for 8 years, and know more

about it than most doctors. I know that all of it *may* be Lyme. Due

to what I write below about FMS, I have had experiences that lead me

to believe that I also have a genetic condition (the FMS). I don't

go into great detail below, as this is a Lyme site, but the

information is all available by book and website, and research

papers. Until I start to get better with Lyme tx, I suppose I won't

know what is what.

The problem is this: We all only have our own experiences from which

to draw our opinions. People with chronic conditions should

understand more than anyone that you never know what its like to

walk in somebody else's shoes.

With that said, people get an FMS diagnosis for different reasons.

OFten maybe because they have pain, fatigue, and the docs don't know

what else is wrong. Often there are underlying conditions that need

attention be it hormonal or vitamin deficiencies, etc and I'm sure

many times it is actually Lyme. Then there are others--- Many have

FMS that meets the criteria set by Dr. St. Amand, a major researcher

in the field, who has a scienfitic explaination for FMS, based on

genetic defects. He has a protocol that has literally given

thousands of people their life back. It is no overnight " cure " that

we all wish would work. It something that takes a lot of time and

patience to reverse- just as it takes time and patience to heal our

bodies from chronic Lyme. I know of many people personally who have

gone from bed ridden, or disability, or any other form of serious

illness to slowling healing and having full lives. There is NO doubt

this is a fact. Clearly, this isn't the place, nor is it necessary

for me to provide the explanations here.

And, then there are some who actually try this protocol, they don't

progress like everyone else, and end up finding out they didn't have

real " FM " they had Lyme.

I put this out there as a reminder that none of us know everything,

we don't know what kind of battle other's face, and that there are

other explanations for symptoms than only Lyme.

I do believe, as I'm sure many do, that there are a lot of people

out there suffering, and a lot thinking they have FM, who really do

have Lyme. It just simply isn't the case for everyone out there.

It actually is quite personal to many people, possibly even

offensive, to say that " FM doesn't exist " . It would be the same as

how a person would feel about doctors who don't believe Chronic Lyme

is real- or that Lyme disease really exists in some places. (I was

told many times that there isn't Lyme in MI-- which is ridiculously

false), etc. I think they are very comparable examples. The worst

thing for the FM community is to have that type of message still

going around.

I definitely am not trying to step on toes or disrespect anyone's

opinions. I just wanted to bring light to the situation.

>

> I am so sorry you do not believe there is a disease called

> fibromyalgia. I was diagnosed with this 10 years ago and I DO

BELIEVE

> there is a disease called FIBROMYALGIA. >.

>

> >

> > Again I do not believe there is really a disease Fibromyalgia. >

>

> >

>

September 26, 2008

Dear Louise:

Fibromyalgia just means a group of symptoms of unknown cause. When

people say they don't believe in the diagnosis, they just mean they

beleive symptoms do have a cause, and that they would rather doctors

look for it, then just giving it a name and sending you on your way.

Its not meant to be disrespectful to anyone who has it, its

considered disrepectful of doctors to give a diagnosis that doesn't

mean anything other than painful body aches, and then tell us to live

with it. Basically, many believe that there are causes to symptoms

and we want to know the cause, not just given a bunch of pain pills.

We all believe you are suffering, its just that we wish that

mainstream medical would spend more time looking for causes of

symptoms.

Heidi N

> >

> > If it where me I would immediately start the Salt/C protocol found

> at the

> > lymestrategies group website. It has helped my wife

> tremendously and

> > is very inexpensive and can be done while you are on antibiotics

or any

> > regimen.

> >

> > Again I do not believe there is really a disease Fibromyalgia.

Read

> the book

> > at the on then end of this post or see the movie. Start educating

> yourself

> > or you will get worse.

> >

>

September 26, 2008

I agree 100% with Heidi N

cathleen

ambitionn01 wrote:

>

> Dear Louise:

>

> Fibromyalgia just means a group of symptoms of unknown cause. When

> people say they don't believe in the diagnosis, they just mean they

> beleive symptoms do have a cause, and that they would rather doctors

> look for it, then just giving it a name and sending you on your way.

> Its not meant to be disrespectful to anyone who has it, its

> considered disrepectful of doctors to give a diagnosis that doesn't

> mean anything other than painful body aches, and then tell us to live

> with it. Basically, many believe that there are causes to symptoms

> and we want to know the cause, not just given a bunch of pain pills.

> We all believe you are suffering, its just that we wish that

> mainstream medical would spend more time looking for causes of

> symptoms.

>

> Heidi N

>

September 27, 2008

You put it much better than I did. Thank-you. Yes she has said what I was

trying to get across.

> [ ] Re: New and Need to Know

>

> Dear Louise:

>

> Fibromyalgia just means a group of symptoms of unknown cause.

> When people say they don't believe in the diagnosis, they

> just mean they beleive symptoms do have a cause, and that

> they would rather doctors look for it, then just giving it a

> name and sending you on your way.

> Its not meant to be disrespectful to anyone who has it, its

> considered disrepectful of doctors to give a diagnosis that

> doesn't mean anything other than painful body aches, and then

> tell us to live with it. Basically, many believe that there

> are causes to symptoms and we want to know the cause, not

> just given a bunch of pain pills.

> We all believe you are suffering, its just that we wish that

> mainstream medical would spend more time looking for causes

> of symptoms.

>

> Heidi N

>

September 28, 2008

Hi,

In my search for an answer to what was causing my long list of symptoms, I

was sent to Mayo clinic (I would NOT recommend it for Lyme) and a

rheumatologist that examined me there told me the reason many Drs diagnose

people as having fibro is because they truly have no idea what is causing

the pain. Unfortunately he wasn't any more helpful than telling me he

didn't think I had that or CFS.just the arthritis part of Lyme.

I did finally find an Integrative Medicine Dr who looked at the long line of

classic symptoms and started treating me for Lyme and eventually tests came

back that proved him to be right. He says I absolutely will be cured of

this. So I'm hell-bent on doing everything possible to prove him right.

I have no answers and know people who have fibro.just relating my experience

yvonne

_____

From: [mailto: ] On Behalf

Of christie

Sent: Sunday, September 28, 2008 7:44 AM

Subject: RE: [ ] Re: New and Need to Know

I don't think he was saying that FM doesn't exist. All fibromyalgia means is

muscle pain, which we probably all have, when a doctor gives you that

diagnosis they are saying you have muscle pain and we don't know why.

I for one think they should find out the cause of the pain. Maybe not all

cases are lyme, but all cases are caused by something. If you know what its

caused by maybe you can treat it. I for one was not happy with that

diagnosis. I just think the statement was taken all wrong.

christie

September 29, 2008

Thanks for the info . It helps put it in perspective!

> [ ] Re: New and Need to Know

>

> A comment on FMS:

>

> If you have ever lived with severe FMS, than you understand

> the " name " that is given to this set of symptoms. If you then

> learned that what you were told was " FMS " was really Lyme, and that

> all the FMS symptoms are ALSO Lyme symptoms, it certainly would lead

> a person to believe that ALL FMS is LYME.

>

> Now, I have Lyme. I have had severe " FMS " for 8 years, and know more

> about it than most doctors. I know that all of it *may* be Lyme. Due

> to what I write below about FMS, I have had experiences that lead me

> to believe that I also have a genetic condition (the FMS). I don't

> go into great detail below, as this is a Lyme site, but the

> information is all available by book and website, and research

> papers. Until I start to get better with Lyme tx, I suppose I won't

> know what is what.

>

> The problem is this: We all only have our own experiences from which

> to draw our opinions. People with chronic conditions should

> understand more than anyone that you never know what its like to

> walk in somebody else's shoes.

>

> With that said, people get an FMS diagnosis for different reasons.

> OFten maybe because they have pain, fatigue, and the docs don't know

> what else is wrong. Often there are underlying conditions that need

> attention be it hormonal or vitamin deficiencies, etc and I'm sure

> many times it is actually Lyme. Then there are others--- Many have

> FMS that meets the criteria set by Dr. St. Amand, a major researcher

> in the field, who has a scienfitic explaination for FMS, based on

> genetic defects. He has a protocol that has literally given

> thousands of people their life back. It is no overnight " cure " that

> we all wish would work. It something that takes a lot of time and

> patience to reverse- just as it takes time and patience to heal our

> bodies from chronic Lyme. I know of many people personally who have

> gone from bed ridden, or disability, or any other form of serious

> illness to slowling healing and having full lives. There is NO doubt

> this is a fact. Clearly, this isn't the place, nor is it necessary

> for me to provide the explanations here.

>

> And, then there are some who actually try this protocol, they don't

> progress like everyone else, and end up finding out they didn't have

> real " FM " they had Lyme.

>

> I put this out there as a reminder that none of us know everything,

> we don't know what kind of battle other's face, and that there are

> other explanations for symptoms than only Lyme.

>

> I do believe, as I'm sure many do, that there are a lot of people

> out there suffering, and a lot thinking they have FM, who really do

> have Lyme. It just simply isn't the case for everyone out there.

>

> It actually is quite personal to many people, possibly even

> offensive, to say that " FM doesn't exist " . It would be the same as

> how a person would feel about doctors who don't believe Chronic Lyme

> is real- or that Lyme disease really exists in some places. (I was

> told many times that there isn't Lyme in MI-- which is ridiculously

> false), etc. I think they are very comparable examples. The worst

> thing for the FM community is to have that type of message still

> going around.

>

> I definitely am not trying to step on toes or disrespect anyone's

> opinions. I just wanted to bring light to the situation.

>

September 29, 2008

I'm a CFS and FMS support group co-leader. When my daughter became extremely

ill afer a surgery I found her a good doctor. This doctor has a full practice of

FMS and CFS patients. He is now starting to think FMS and CFS " might " be Lyme or

a lyme coinfection. The jury is still out but something to think about. Another

doctor thinks " Lyme " is being over diagnosed when the untested culprit is really

the coinfection. Not all LLMD's test for coinfections. It is our job to request

it if they don't.

A dear friend who is a stealth pathogen researcher is convinced FMS and CFS are

symptoms of Lyme and or Lyme coinfections. I'm sick for 25 years and am

now thinking about getting tested. I have a CFS diagnosis. My now 25 year old

daughter has a Lyme and Bartonella diagnosis and HHV6 which is seen in CFS

patients and Lyme patients. My daughter got sick after an emergency

appendectomy.. I got sick when I gave birth to her. I can't help but think she

has had this in her system dormant all these years and it was set off by the

surgery.. And, mine was set off by childbirth and I passed it on to her.

[ ] Re: New and Need to Know