Re: (FE)MALES AND FIBROMYALGIA-FROM ABOUT HEALTHY LIVING

[Guest guest]

Here is my idea on FMS/CFS. I do not feel that these are seperate diseases, but merely symptoms of a greater problem that has not be dxed yet. Many Drs will just hand out these dx's and not look any further. Most FMS sypmtoms match our Lyme ones perfectly. And the FMS 'trigger points', what a joke they are. Anyone with chronic pain will most likely have those points! All they are are ancient chinese acupuncture points, we all have them and when something comes along to inflame them , Drs say oopps ya got FMS. I truly, wholeheartedly feel that 99.99999% of FMSers out there have anything other than FMS. Like seronegative Lyme, or MS or something else. FMS is just a catchphrase for symptoms, its like saying 'I have a cough along with my pneumonia' This is just my thoughts, dont mean much and darn sure dont want to offend anyone. Pepi

[Guest guest]

Wrong you are Pepi!!!

[Guest guest]

> Wrong you are Pepi!!!

I do not mean this sarcasticly, but prove to me that I am not, please! I

have yet to see true research into FMS. Everything I have yet to read is

just what drs think.

[Guest guest]

> Wrong you are Pepi!!!

Now that I have thought longer on this let me add some. What causes FMS?

is there anything? Isnt FMS symptoms that match many other diseases/medical

conditions? There is not test for FMS, right? I have done some research into

this as FMS was one of my misdx's, I still think it is a symptom of

something greater, but am very open to any ideas about it. What do ALL

Y'all think about this? Pepi

[Guest guest]

Pepi,

You're right. At this time no one knows what the causative agent for FMS is. Many researchers and doctors believe it is a bacteria or maybe a virus that has yet to be isolated. And there are even a few docs that think it is Bb that causes FMS.

Bb definitely can cause FMS symptoms. Whether or not all FMS cases are Bb I don't know.

Robynn

Re: [ ] (FE)MALES AND FIBROMYALGIA-FROM "ABOUT HEALTHY LIVING"

> Wrong you are Pepi!!! Now that I have thought longer on this let me add some. What causes FMS?is there anything? Isnt FMS symptoms that match many other diseases/medicalconditions? There is not test for FMS, right? I have done some research intothis as FMS was one of my misdx's, I still think it is a symptom ofsomething greater, but am very open to any ideas about it. What do ALLY'all think about this? Pepi

[Guest guest]

me too!!!! Faye

[Guest guest]

I, and others, believe that...

FMS = MS = Lyme = CFS = Parkinsons = Polymyalgia = etc.

[Guest guest]

Dear Pepi,

I agree with you. I think FMS was made up by the Rheumatologists because

they don't

know Lyme when it's kicking them in the face. When I was doing my internship, I

was told

by the attendings that when one hears hoofbeats outside the window don't think

zebras.

Some of the more show-off type interns would come up with rare diseases as a

diagnosis

when the patient had pneumonia or TB (it's a city hospital). Well, gosh darn it,

what do

you think the rheumys have done? They made up a zebra--Fibromyalgia. As you

said, just

my humble opinion, but I have to try not to laugh when someone tells me that

they have

Fibromyalgia! The Rheumys couldn't diagnose Lyme so they made up another disease

for the

same symptoms. It's just trendier.

Eileen, NJ

[Guest guest]

rheumys have done? They made up a zebra--Fibromyalgia.

Thank you for saying that in a much better way than I did!! LOL When Lyme

brain attacks me i go from thinking one thing to typing another and yet a

whole new phrasing comes out! I did go back and look at several of my FMS

abstracts and low and behold just guess who they were written by?? Give up?

Steere, Sigal, Shapiro, the 3 blind mice! Gee we dont have Chronic Lyme

infections, we now have FMS, which is by the way listed under support groups

at the CDC website.

I did read a few months ago of a study done at or by an FMS clinic and

they had 90% of their FMS/CFS patients test poss for Lyme. My Puter crashed

not long after that and I lost all my favs and emails, so I have no clue

where I read that at.

Speaking of puter probs, a few months ago someone made a post about a

rather delicate problem here in the Lone Star State, which I forwarded to a

few people. Right after i started having major puter probs and kept on

having them untill a freind of mine suggested I delete that file, Poof no

more probs. Coincidence? Maybe. But......... Anyone else know what I am

talking about and have problems? Pepi

[Guest guest]

The test 3 different rheumtologsts did on me is the " ouch " test. They ask

you lots of questions, etc then when you are in brain fog they sneak up on

you and gab you by the elbow in a trigger point!! If you have fibro (which

I do) you will let out a blood curlding (Msp) shriek (which I did) thereby

they write down fibro in their little notes. I also had lots of blood work

but that won't show fibro. I think Dr. Starlanyl's book is the best on

fibro. I like the chapter on guaifenesin therapy (detox) best. IMHO :-)

Alice

egroups

Sent: September 20, 2000 3:09:46 AM GMT

Subject: Re: [ ] (FE)MALES AND FIBROMYALGIA-FROM " ABOUT HEALTHY

LIVING "

> Wrong you are Pepi!!!

Now that I have thought longer on this let me add some. What causes FMS?

is there anything? Isnt FMS symptoms that match many other diseases/medical

conditions? There is not test for FMS, right? I have done some research into

this as FMS was one of my misdx's, I still think it is a symptom of

something greater, but am very open to any ideas about it. What do ALL

Y'all think about this? Pepi

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[Guest guest]

I challange that remark...Pepi is NOT wrong. period.

cherlyme

In a message dated 9/19/00 6:21:45 PM, JoAnnUdderKos@... writes:

<<Wrong you are Pepi!!!

>>

[Guest guest]

many people who may be sick with untreated infections ..bacterial or

viral will have FMS symptoms...FMS symtpom are discirbed as having a flu with

no flu...

a cold makes you ache, hurt body/brain functions off..as well as the

'flu' that people feel like they're gonna die...i suppose AIDS, CNACERS AND

OTHER VIRAL INFECTIONS have the symptom checklist of FMS...so in that light

FMS EXISTS...

BUT MOST IMPOTANTLY ...WHAT IS the underlying cause OF SYMPTOMS OF

fms/cfids? could it be an infection, bacterial . viral. parisites. co-

infections. both..

and new emerging undiscovered infections?

cherlyme

In a message dated 9/19/00 8:08:28 PM, rod@... writes:

<< Wrong you are Pepi!!!

Now that I have thought longer on this let me add some. What causes FMS?

is there anything? Isnt FMS symptoms that match many other diseases/medical

conditions? There is not test for FMS, right? I have done some research into

this as FMS was one of my misdx's, I still think it is a symptom of

something greater, but am very open to any ideas about it. What do ALL

Y'all think about this? Pepi

>>

[Guest guest]

Hi Pepi,

I'm sorry I waited so long to explain what I meant when I said that you are

wrong about Fibro.

I wrote all of this last night and unfortunately made and error in your

e-mail address and got it back and being new at comp. life..I couldn't find

out how to resend it.

I am 74 years old and have hurt all of my life...my legs used to hurt me so

bad..but they called it growing pains in those days..Lots of had them and

some of us still do..not as much because I take care of myself.

I waited many years to find out what it was and during that period of time I

also had tick bites (first bulls eye 30 years ago) and since one bulls eye

and now a rash on back of leg as big as my hand..Fortunately all the

antibiotics aborted the last two and many tick bites before that.

Now i lived in Tex. and Ark. way back there and it is possible that i was and

certainly was in contact with ticks..but as far as is known that was and is

not involved in my fibro. diagonosis..because there are differences I have

discovered in reading everyones mail here on lyme forum..

I have never had all the symptoms that most of the people say they have.

I also have degenerative arthritis all my life..polio (slight case) and all

of these things have commonalities..but I definitely have Fibro. and not

lyme..thank goodness..sounds terrible and as long as I don't overdo my fibro.

doesn't hurt as much as it can.

My dr. today also said that lyme affects knees and i have never had that

problem except from accidents..

I am so grateful that i have at least a fibro. diagonosis as it was years

before anyone believed I could hurt all over and sometimes even my hair

hurt..so it was with great relief that finally someone came up with that..so

I refuse to have that diagnosis taken away from me.

Lots of aches in common but different enough to differentiate. Jo-Ann

[Guest guest]

Jo-Ann,

Your Dr is wrong. Period. No I am not a Dr but Lyme affects people

differently. If you take 10 lymies we will all have different symptoms. Just

because your knees dont hurt doesnt mean its not Lyme but FMS

instead.Because your lyme test was neg, doesnt mean its not Lyme, the

spirochetes are not always present in the blood. Fibro is just a term that

ignorant Drs use when they really cant figure out what is wrong. Fibro is

not a disease it is just a culmonation of symptoms. Its like saying I have

pneumonia with coughing.

I would bet you still have Lyme. It is not an easy cure and just a small

course of antibiotics does not a cure make. There are Drs out there that

think they are the experts on lyme and they are giving full credence to

" Fibromyalgia " instead of chronic Lyme. This is perpetuating the false sense

of a Dx. I have done research into FMS and MS till I am blue in the face and

still cant grasp why Drs call a group of symptoms a seperate disease. And I

love the 'Trigger Point " theory, give me a break, those are ancient

acupuncture points, everyone has them, if you are sick then they hurt more.

Back in '99 there was a study done and they found that 90% of FMS/CFS

patients at a clinic had Lyme disease. 90%. That is a stunning fact. Actual

Lyme Drs feel that alot of these diseases are not seperate but one.

I am sorry you hurt, this is not fair. But I must passionatly disagree

with you. FMS is just a grouping of symptoms. Period.

Pepi

[Guest guest]

Dear JoAnn,

I agree with Pepi.

Sadly, despite your doctor saying you don't have Lyme because your knees

aren't affected, it is my feeling, based on what you have reported here, that

you probably do have Lyme. Classic, long-term Lyme at that.

Stay with this mailer, and do more research... we are here to share & help

you.

Even if it turns out that you don't have Lyme, and for your sake I hope you

don't, your doctor still is so wrong.

Hugs, a Aida in NJ

[Guest guest]

Hi a.'

I don't understand why I just can't have fibro.--there are enough diseases to

go around.. and I've had this for too many years and I know it is fibro. and

thank god it is not lyme..

Sure some of the symptoms are the same..but...forget the knees I just threw

those in..If I had lyme I would have all of the other things I read about in

all of these letters to the forum and I don't have them...so why can't I just

have fibro. in spite of Pepi...don't you think it is strange that he started

out knowing nothing now he knows everything!!!

[Guest guest]

Hi Pepi,

Are you a native Texan? You must be because you started out knowing nothing

and now you know everything. " He who knows everything and yet knows nothing. "

Why can't I have Fibro. and you have Lyme if you want it. There are plenty of

diseases to go around.

It's o.K. if you don't respond because this will be my last message to you.

It is strange to me that you started out when I first signed on to this

forum..and you knew nothing and now you are the expert.

My second Texas favorite. I am an ex-texan..and it is as follows..

I may not always be right but by god I'm never wrong.

Are you sure you are not one of those plants that I have read about on this

forum?

H:ope ;you recover from your diseases..there are so many and yet only one in

your mind ..lyme.

Jo-Ann

[Guest guest]

Pepi, I agree with you about " fibromyalgia " being a catch-all phrase (in many

cases, at least) for other problems, notably Lyme. I wonder how many of us

were told we had " fibromyalgia " before being diagnosed with Lyme? I was --

for 6 years I thought I had fibro, until I found a LLMD. Just my 2 cents to

add to yours, Pepi. --Charlotte in Vermont

[Guest guest]

> have fibro. in spite of Pepi...don't you think it is strange that he

started

> out knowing nothing now he knows everything!!!

He didnt start out knowing nothing and now knows everything. I had a very

bad few days with new meds and I needed to go back through my research to

see if what I was remembering was in fact as I remembered it before I stated

what I know. What people are trying to say is that Fibro is not a disease,

it is a group of symptoms that match many diseases/problems, Period. The

Drs that claim a pt has FMS are the ones that are not Lyme literate. i hope

you dont have Lyme, I wouldnt wish this on anyone. But with all your

symptoms you stated, sure sounds like thats what it is. Pepi, BTW I am

not a he.

[Guest guest]

Jo-Ann

> Are you a native Texan? You must be because you started out knowing

nothing

> and now you know everything. " He who knows everything and yet knows

nothing. "

No I am not a native Texan, and I needed to go back over my research to see

if what I was stating is was correct. It is and I stand behind it 100%.

> Why can't I have Fibro. and you have Lyme if you want it. There are

plenty of

> diseases to go around.

You can have Fibro if you want, all it is is a symptom list and if thats

what you want , so be it.

> It's o.K. if you don't respond because this will be my last message to

you.

> It is strange to me that you started out when I first signed on to this

> forum..and you knew nothing and now you are the expert.

I am by far not an expert, but FMS was a mis-dx of mine, that along with

MS. So when I got my Lyme dx it became my mission in life to prove to myself

what in the world it was I had. It is in this quest that I learned that

there were many ignorant Drs. And many of them stick with FMS instead of

figuring out what was really wrong. Or sticking their necks out and treating

for Lyme.

> My second Texas favorite. I am an ex-texan..and it is as follows..

SInce you are the native texan, maybe you are the one that knows it all.

> I may not always be right but by god I'm never wrong.

>

> Are you sure you are not one of those plants that I have read about on

this

> forum?

Plants? I think I know what you mean. You are confused, were I a plant I

would be the one trying to convince everyone that they had FMS and not Lyme.

H:ope ;you recover from your diseases..there are so many and yet only one

in

> your mind ..lyme.

No, I know all to well that there are many others. But I dont like it when

Drs make up ones to make people happy with a dx, but then leave that person

to never get better. If you havent noticed I am not the only one with this

belief, that there is no such thing as FMS. I thought the idea of this

board was to post knowledge and ideas, dont shoot the person that you dont

agree with. If you want to stick with your FMS dx so be it. I think of

these people as my family, and were you my mother, I would take you to a

Lyme Literate Dr and have him figure out what you had. I do not like to see

people suffer because of the ignorance of Drs that look for zebra's instead

of the horse in front of their face.

Best wishes to you, and I hope you get to feeling 100% Pepi

[Guest guest]

Charlotte,

Has anyone ever thought that possibly you can have both? I know lots of

people with fibro. who have never seen a tick or had any reason to be

diagnosed with lyme.

I happen to have had much contact with ticks and could have both and or parts

of each according to how the antibiotics I have had to hopefully abort it and

I am back to fibro. only.

..

With this last tick bite..my internist and my dermatologist both are

concerned with Lyme and not fibro..so all Dr.'s here at least do not just

write it off as fibro..not mentioned by either one..My internist is retiring

but he has always ordered me on antibiotics for each tick bite I have..and so

when dermatilogist suggest antibiotics..I refused as I had already had a

month of three antiobics..some which I an tolerate and some i

cannot..Zitromax is an ongoing antibiotics that I take for my asthma when I

develop broncitis..so it was a surprise when in spite of 2o days or so I

developed some asthma.

Unfortunately, I fear that none of this, at this time, can be sorted out and

so again I say I do not have all of the problems that Lyme (chronic or

passing??) and frankly I hope to god I never get a full blown case of

it..and so there would not be a reason for a Dr. to suggest that i have Lyme.

I have lived with whatever ;you want to call it for over 65 or more

years..and none of it is any fun..regardless of what you want to call it..but

from reading all of your e-mails..I am thankful with what I have and that it

is not so traumatic as Lyme seems to be. I have enough without that, too..and

just glad that i have something with a name to it rather than something that

drs. for years thought was all in my mind..

Gosh now I have one and involved in another of the two most fashionable

diseases of the day..instead of having them send me to a shrink when I tried

to get help because I hurt all over..Gave up took my arthritis medicine..and

waited for someone to figure out something with a name attached to it that

proved I could hurt all over..I still do but have learned to live with it and

ignore it most of the time until something comes along and i don't take care

of myself..and then it really gets my attention..regardless of what it is

called.

Good luck.

Jo-Ann We're all in the same boat we are just rowing with different

oars..and whichever we row with ...hurts and makes us feel awful.

Just keep on floating!!!

[Guest guest]

Dear Marie,

At last a good definition..I know lots of people who have fibro. and have

never seen a tick..and I know at least one who has had lots of tick bites but

somehow I missed out because i took the anti. soon enough to abort it..Thank

goodness...also maybe it (the tick) had not been on long enough or didn't

have the right infective material..whatever I do not have all the stuff I

read about that everyone else has..Thank God!!or my non lyme Dr. who is smart

enough to give me what i need when i need it.

I had a Dr. before this one 25 years ago..a rheumatiolgist who should have

know better..tell me as did many others at the time that i could not possibly

hurt all over..so finally one day I said, " I think I have bone

cancer..(because of all the pain for so many years) and he answered wisely?

just before I found another Dr...(You'd be dead if you had bone cancer. " By

this time someone had discovered my disease had a name and it is an arthritis

that is recognized by the Arthritis society and now every Dr. I go to has

been educated by me and accept that i do not need a shrink like those before

them...You can hurt all over but you learn to live with it and take care of

yourself..sometimes still, even my hair hurts if i overdo..now since I

retired in 72..I have the luxury of taking care of myself pretty much and

only hurt when i laugh.<h,H>

[Guest guest]

I was told I had fibromyalgia in the 70s. When I called the CDC, around

1988, I asked " What's the difference between Lyme Disease, Chronic Fatigue

Syndrome and Fibromyalgia? " . The exact answer was " The tick bite " .

Rita B

[Guest guest]

Wow - I enjoyed reading all the emails that went back and forth about

fibromyalgia. Interesting; from my readings as well I agree with Pepi. It

sounded to me like we lymies were trying to help Joann, but she became too

defensive. We all went years without being diagnosed all because, as Eileen

so aptly put it, Drs. never wanted to listen to the hoof beats. It is a shame

but it continues to happen. KIM

[Guest guest]

While i appreciate everyone trying to help..I have tried to tell everyone i

don't need it. I have known too many people with fibro. who have never seen a

tick..and only one person has had the sense to mention that that might have

something to do with whether you have lyme or not.

The Arthritis Society believes in Fibro,.Sogrens syndrome , degenerative

arthritis and so far I have not gotten any feed back that any lyme person can

concede that there are such things..other then Lyme..with or without tick.

Now I am 74 years old as I have stated before and I have had what i have now

for over 65 years..and so I assume if I have had all of what i have now and

for the last 65 years..something different would have happened in that length

of time..

So far the only difference i have experienced is buying a chair for my first

computer..and getting an arm ache from sitting at this computer so long..so I

will sign off as I have a story to write..at the computer and it is killing

me to sit so long doing this when i have a deadline to meet..and just hope my

arm holds off without too much pain medicine to get me through it.

I appreciate all of your attempts to help and let me assure you if you are

right I will be the first to let you know..Thank you for your attention.

I am sorry that you all have this disease but i truly believe you can have

both and not be able to tell the difference in many cases except that in my

case I have never experienced all of the things i read on this group..thank

goodness.!!

Thank you and best of luck to us all.Jo-Ann