Diagnose MS 4 years ago now equivocal WB

[Guest guest]

jrsaund@... wrote:

<<I have a friend diagnosed with MS 4 years ago just recently tested

for Lyme and the results are equivocal. Doctor will treat with oral

antibiotics. He has progressive disease from onset with chronic

fatigue the primary symptom many years prior to the diagnosis. Now

walks with cane (barely)having to drag the left leg. Left hand grip

is weakening. Has bladder problems, spasticity, leg cramps, memory

problems and a new problem with ringing in the ears which comes and

goes. Has occassional bouts of " bursitis " in right shoulder and right

rib discomfort with Xray showing nothing. Anyone out there with a

similar story who improved to any degree after being on antibiotics a

while? Would love to hear anything good or bad!>>

Hi

I had to respond to you, as a number of the symptoms you listed were mine.

In addition to Lyme Disease I had severe compression of my spinal cord

due to bulging and a herniated disk within my congenitally narrow spinal

canal

(cervical/neck area). Please have your friend ask to have a cervical MRI

done!

I had a cervical decompression and fusion done in November. I still have Lyme

symptoms which overlap with those of spinal cord damage.

If you want more information on spinal cord compression please feel free to

write

me off list. I would be happy to share any and all the information I have

gathered

with you.

Jane

(PS My WB was also equivicol)

[Guest guest]

jrsaund@... wrote:

<<I have a friend diagnosed with MS 4 years ago just recently tested

for Lyme and the results are equivocal. Doctor will treat with oral

antibiotics. He has progressive disease from onset with chronic

fatigue the primary symptom many years prior to the diagnosis. Now

walks with cane (barely)having to drag the left leg. Left hand grip

is weakening. Has bladder problems, spasticity, leg cramps, memory

problems and a new problem with ringing in the ears which comes and

goes. Has occassional bouts of " bursitis " in right shoulder and right

rib discomfort with Xray showing nothing. Anyone out there with a

similar story who improved to any degree after being on antibiotics a

while? Would love to hear anything good or bad!>>

Hi

I had to respond to you, as a number of the symptoms you listed were mine.

In addition to Lyme Disease I had severe compression of my spinal cord

due to bulging and a herniated disk within my congenitally narrow spinal

canal

(cervical/neck area). Please have your friend ask to have a cervical MRI

done!

I had a cervical decompression and fusion done in November. I still have Lyme

symptoms which overlap with those of spinal cord damage.

If you want more information on spinal cord compression please feel free to

write

me off list. I would be happy to share any and all the information I have

gathered

with you.

Jane

(PS My WB was also equivicol)

[Guest guest]

Hi Jrsund,

Welcome to our list, you are a good friend to do this research for the

person you are writing about. There is no such thing as an equivocal test,

it is like being a little pregnant. Lyme testing is highly unreliable when

it is negative but when positive it shows antibodies that the body has made

to fight LD and should be viewed as accurate. Look at your friend's lab

study paper, it will contain a blurb or disclaimer from the lab that testing

for LD is unreliable and that results shown do not mean the person does NOT

have LD. I have a known and vividly recalled tick bite, yet due to MRI's

that show lesions on my brain and other symptoms I could be dx'd with MS

too, I have argued with more than one dumb doctor about this. A good friend

of mine's main symptom after her known tick bite was to drag her left leg,

after many months on IV meds she walks fine now, and she is working full

time again. Oral antibiotics did not help her at all, she only improved

when on IV Claforan. The problem with the shoulder pain coming and going

was a symptom I still suffer from. I begged for an MRI of the cervical

spine when neck pain started too, and was found to have Herniated discs at

C5,6 and 7. Strangely many of us with LD have this same herniation. It

must be a common feeding ground for the Lyme bacteria (spirochetes).

Many of us also suffer from rib pain, there is a name for it, and darned if

I can recall it, but x-rays will never show anything, it is an inflammation

of the rib tissues.

I also have recurring bladder problems, difficulty urinating, cannot get

the stream started unless I cough. I have had the gamut of testing

available and none of it showed a darned thing.

Please keep us posted about your friend, if he needs the names of Lyme

doctors, write me off list and tell me what state he lives in as well as the

county, maybe I can dig up some names for him.

Welcome hugs,

Marta

-----Original Message-----

From: jrsaund@... <jrsaund@...>

>I have a friend diagnosed with MS 4 years ago just recently tested

>for Lyme and the results are equivocal. Doctor will treat with oral

>antibiotics. He has progressive disease from onset with chronic

>fatigue the primary symptom many years prior to the diagnosis. Now

>walks with cane (barely)having to drag the left leg. Left hand grip

>is weakening. Has bladder problems, spasticity, leg cramps, memory

>problems and a new problem with ringing in the ears which comes and

>goes. Has occassional bouts of " bursitis " in right shoulder and right

>rib discomfort with Xray showing nothing. Anyone out there with a

>similar story who improved to any degree after being on antibiotics a

>while? Would love to hear anything good or bad!

[Guest guest]

Hi,

Do you ever wish we could treat some docs the way they treat us? I am sorry

about your experience and have had many similiar myself. With the elevated

ANA, will you be seeing a RHEUM? Just curious. Is this typical in lyme??

Thanks, Christie

From: Namkrats3@...

Hi Friends,

Our LLMD sent hubby to Rheumy for a second opinion regarding his

elevated ANAs and swollen finger. I was hoping that she was going to be

LL, since she was recomended by our LLMD.

She started out okay...admitting that Lyme imitates other diseases. We

talked about his bullseye rash and neck stiffness, and that LLMD is

treating him for Lyme, but ANAs are still elevated. Then she parroted

the dreaded Steere et al mantra...

[Guest guest]

Hi Friends,

Our LLMD sent hubby to Rheumy for a second opinion regarding his

elevated ANAs and swollen finger. I was hoping that she was going to be

LL, since she was recomended by our LLMD.

She started out okay...admitting that Lyme imitates other diseases. We

talked about his bullseye rash and neck stiffness, and that LLMD is

treating him for Lyme, but ANAs are still elevated. Then she parroted

the dreaded Steere et al mantra...

" Didn't your doctor recommend the Lyme vaccine for you since you are at

high risk being that you live in a tick-infested area? "

I almost jumped out of my chair (and skin!), Prozac and all, and filled

her in on what terrible advice that was!

Flustered, she then went on to say that The Lyme blood tests are

accurate, except for a few cross-reactive false positives...but rarely

any false negatives " .

I then interrupted her and told her of my YEARS of FALSE

NEGATIVES...then 4 pos WB bands and 3 positive LUATs. She was

speechless.

I am going to print out the accurate info for her. Hopefully she'll read

it. I am also going to tell my LLMD that she is not LL.

UGH!

Joan LI NY

[Guest guest]

At 02:38 AM 4/26/00 -0400, you wrote:

>Good for you Joan,

> Glad you straightened her out, I must not be assertive enough, the last

>time I saw a Rheumie, I let him ramble on with the Steere stuff, picked my

>stuff up and left. It was really hard to deal with this idiot especially

>since his zipper was down during the whole appointment. I could not focus

>on another thing....LOL! Seriously, every time I would try to speak, he

>would just talk over me.

Think the fly at least kept you sane - lol! But do you ever feel Docs and

even well meaning healthy people try to blame you - that you are just too

much trouble to deal with? I just lost my best and most steady doc which

was my RHEUM, because of things I was too complex. And I have nearly given

trying to understand how to deal with docs - polite or assertive, neither

seem to work anymore. I talked to a counselor who thought maybe something

in my behavior was causing docs to dismiss me and that I let illness take

over my life. I worked around disability and kept it hidden and can no

longer do that. ALso I have ill child to care for and am simply too weak

and brain fogged to do little else. I have a list in order to help others

and feel useful. I do read as I can and attend religious services so that

illnes is not total focus. But sometimes it is! Has anyone come up with

ways to deal with people who seem to focus on the negative even when you try

to accomadate them? Have a caring LLMD and I am grateful for that! Any doc

suggestions are welcome - I used to help others through medical maze and

now I am lost in it myself!

Thanks for listening and take care,

Christie

[Guest guest]

This is a correction to what my Mom wrote. What should of have been written

was that Lyme is frequently a precursor to LUPUS (not Lyme)

Sincerely,

Lil