Re: questions from newbie

December 15, 1999

Hi marie.. glad u got a doc that listened to u and DX u.. I been having

similar symptoms.. but doc thinks it`s ms.. having mri wedensday.

Could u please e-mail me and let me know what is the name of the doctor u saw

in Boston... I live in Boston also.

I am getting really depressed as I been having these symptoms for 10 yrs on

and off and they tell me it`s not Lyme.. had blood test done but was neg.

Please I would appreciate if u could e-mail me

Thanks

Bridie

December 15, 1999

marie...welcom to our group........yes many of us suffer from cfids type

symptoms combined with fibro......they are both major parts of lyme

symtomollogoy....along with other not so know symptoms as ....digestive

troubles hair loss.....ect.......

go to www.lymealliance.org

from that site u can print out the total list of 42 symptoms.....u may be

suprised when u see some of them i was......i to was misdx'ed for 3 years

bfore they realized it was lyme as were many of us......this disease is the

great imitator......however when u look at ALL the symptoms and then ur doc

test to rule out other causes of those symptoms .....we usually find out it

is lyme ......thus a clinical dx........some of us are lucky enuff to have +

blood or urine testing ........however some docs blow these away as false

positives.....welcome again and feel free to be active in our little (but

growing) group.....

Reid

December 15, 1999

In a message dated 99-12-15 22:39:50 EST, you write:

<< To be honest, although I have a debilitating illness, I

assumed I'd have arthritis and neck pain if I had Lyme.

>>

Dear Marie,

It seems to me that " tick " (also fly, flea & mosquito) diseases attack

whatever is weak or more prone to invasion in your body. Perhaps some people

are genetically predisposed to problems in some areas of body over others.

(Just my opinion & what others have said.)

In my daughter's case, it was the autonomic nervous system. No rheum either.

Also, believe I just read something somewhere about minocin (form of

tetracycline) wiping out the rheum problem. My daughter was on this for 2

yrs (more on than off) for acne. Didn't want to put her on it at the time,

but may have been a real Blessing in disguise! I suppose we'll never know

for sure.

Hope this helps,

Blessings & velcros,

Chris

December 15, 1999

Hi, Everyone,

I've been lurking for some time, as I was waiting for my app't with an

excellent LLMD in Boston - I didn't know if I had Lyme or not. Today,

after an interview and exam, he told me he believes that I have chronic

Lyme. I had a Western Blot done today and will have a brain SPECT scan

soon. I'm to start tetracycline (it's 500 mgs, but I can't read his

handwriting! I think I take it 3 times a day). He said I could wait

until after the holidays to start it, since I'll feel worse first.

I'm really astonished. I've been struggling with " Chronic Fatigue

Syndrome " for 5 years, with cognitive probs, muscle aches, and low grade

fevers. I have had no joint pain - only my ribs.

Have others with Lyme experienced CFS symptoms? I'm just so astonished at

this news. To be honest, although I have a debilitating illness, I

assumed I'd have arthritis and neck pain if I had Lyme.

I'm having a hard time believing this diagnosis (partly because it seems

too good to be true that I could give this debiliating condition a name

and a treatment! I'm so used to explaining Chronic Fatigue Syndrome).

I don't have WB results back, but he said there ARE sero-negative lymies.

I'd be grateful for others' responses - could this really be true?

This LLMD is the one working on biaxin/plaquenil (sp?) combination.

Thank you for your response!

Sincerely, Marie

December 15, 1999

From: Marie Henson <henson2@...>

Hi, Everyone,

I'm really astonished. I've been struggling with " Chronic Fatigue

Syndrome " for 5 years, with cognitive probs, muscle aches, and low grade

fevers. I have had no joint pain - only my ribs.

***I began my problems similar to yours, only mine continued

over 3 years into the terrible neck pain and completely spread

throughout my body. I have days where pain is in knees, then

a few days later back in the neck. I was first diagnosised with

CFIDS then Fibro and a couple other things. But, I felt there

was more to it since I knew these were just labels put on a bunch

of signs and symptoms. What was causing the CFIDS and the Fibro?

I felt like I had an infection overwhelming my whole body. I think

most of us do go through that unbeilf stage if we have searched

for a long time for answers. Just read all you can and learn. No one

has all the answers yet and no sure fire cure, but some problems

that you might have faced further down the road me be slowed or

stopped now.

Barb - MI

December 16, 1999

Hi Marie,

Glad to hear from you! I've been wondering about you. Even glader to hear

you've got a good doctor - what a godsend (as you know if you've been

lurking here).

There are so many strains of Lyme - some people have more arthritic

symptoms, some primarily neurological, some both. I had neck pain but very

little arthritis - I would say my symptoms have been 80% neurological.

Although right now I'm herxing on Flagyl and every joint and muscle in my

body is hurting! Lyme is known as the great mimicker of many other illnesses

like CFIDS, MS, lupus, ALS, FM and more, that's why it's so hard to

diagonose, along w/ the fact that the testing is so imperfect.

Oh, and rib pain seems to be pretty common w/ PWL. I have it.

Good luck on the abx and getting the proper diagnosis. Keep us posted.

Love,

beth

December 17, 1999

Marie,

I have likely has LD for 18 to 20 years. Just diagnosed this Fall.

One of my major symptoms is debilitating fatigue. It was fobbed off by

doctors for about 18 years as related to depression.

Another is muscle pain that comes and goes -- fobbed off to Fibromyalgia

Syndrome.

Cognitive problems -- fobbed off to depression.

Low-key (mostly), fugitive, non-symmetrical joint pain -- " undiagnosed

arthritic-like symptoms "

Soaking sweats and _low_ body temperatures -- unknown cause.

Negative results on ELISA, Western Blot and LUAT. Positive on PCR.

Lyme Disease is a _clinical_ diagnosis only supported by notoriously

unreliable tests. Good luck.

Ken

Re: [Lyme-aid] questions from newbie