Re: Newbie with some concerns

[Guest guest]

Surest way to find out is how you react to antibiotics. Do you feel better, than

worse or feel as if you are allergic to abxs? This should give an indication if

lyme.

[ ] Newbie with some concerns

Hello,

I was recently diagnosed with MS last week after being hospitalized.

During my initial testing phase, I was also tested for Lyme disease

through a western blot and eliza test. I tested negative.

Although many of my symptoms coincide with lyme, they also coincide with

ms so I am now confused as to which disease I actually have.

A number of incidents occured that make me question my current

diagnosis.

1. I developed optic neuritis in the left eye and was given steroids for

the condition. I had a horrible reaction during and again 2 weeks after

tapering off of the prednisone.

2. I was diagnosed with lupus 6 years ago, mitral valve prolapse,

supraventricular tachycardia, chronic fatigue syndrome, fibromyalgia,

and now ms based on evoked potentials, mri, spinal tap, and clinical

history.

3. My hospitalization as a result of losing my hearing in my left ear.

My steroid reaction had me feeling like crap. I truly thought that I

would die but could not stop taking them without tapering. After that

horror I experienced more 2 weeks later when my hands and feet developed

tiny blisters which are now currently peeling. They wanted to give me IV

steroids in the hospital but I adamately refused.

The test findings which led to my ms diagnoses were multiple abnormal

signals in the white matter that were not classical for a demyalating

process but could not be ruled out. One obvious lesion was however found

on brainstem which warrants the vision and hearing loss.

The spinal tap was negative for lyme titers and ms protein bands but was

positive for showing an inflammation process.

I have never recalled being bitten by a tick but I have always been an

outdoors person. Fishing is my sport. I also once worked in a wooded

area at the age of 18, I am now 42.

As to leave no stone unturned due to my uncertainty, I made an

appointment with a lyme literate Dr. He tests with the Igenex test. The

soonest appointment was for the 19th of September so I must wait. In the

meantime I am to begin Rebif injections next week. I still plan to start

the injection just in case.

As individuals with lyme disease, what is your opinion? Did I mention

anything that should raise the red flag?

Generally, I have always felt good even with the ms symptoms. Many of

the lyme symptoms did not apply to me, yet I have health conditions

consistent with lyme hence my confusion.

Thank you for listening.

MightyMowth

[Guest guest]

Hey, Mightymowth,

Yes, your symptoms could be Lyme-related, and you certainly have a possibility

of exposure. Fewer than half of Lyme patients ever recall a tick bite or a

rash. I had a nymph on me last week, and it was barely the size of a grain of

sand. Even if the IGenex tests are negative or indeterminate, it could still be

Lyme... or not. Sadly, the tests are not as reliable as we would like.

Is it possible for you to get a CD-57 done with your regular doctor while you

wait for the LLMD? Since Lyme is the only pathogen known to depress this count,

it can be helpful in differential diagnosis. If it is low, along with your

clinical symptoms and probable exposure, you probably have an active Lyme

infection. If it is normal, Lyme is unlikely, but can't be entirely ruled out.

See: http://www.publichealthalert.org/2-Page-8.html for a good explanation of

the test, what it's for, and where to get it done correctly.

Best of luck with it,

mightymowth <mightymowth@...> wrote:

Hello,

I was recently diagnosed with MS last week after being hospitalized.

During my initial testing phase, I was also tested for Lyme disease

through a western blot and eliza test. I tested negative.

Although many of my symptoms coincide with lyme, they also coincide with

ms so I am now confused as to which disease I actually have.

A number of incidents occured that make me question my current

diagnosis.

1. I developed optic neuritis in the left eye and was given steroids for

the condition. I had a horrible reaction during and again 2 weeks after

tapering off of the prednisone.

2. I was diagnosed with lupus 6 years ago, mitral valve prolapse,

supraventricular tachycardia, chronic fatigue syndrome, fibromyalgia,

and now ms based on evoked potentials, mri, spinal tap, and clinical

history.

3. My hospitalization as a result of losing my hearing in my left ear.

My steroid reaction had me feeling like crap. I truly thought that I

would die but could not stop taking them without tapering. After that

horror I experienced more 2 weeks later when my hands and feet developed

tiny blisters which are now currently peeling. They wanted to give me IV

steroids in the hospital but I adamately refused.

The test findings which led to my ms diagnoses were multiple abnormal

signals in the white matter that were not classical for a demyalating

process but could not be ruled out. One obvious lesion was however found

on brainstem which warrants the vision and hearing loss.

The spinal tap was negative for lyme titers and ms protein bands but was

positive for showing an inflammation process.

I have never recalled being bitten by a tick but I have always been an

outdoors person. Fishing is my sport. I also once worked in a wooded

area at the age of 18, I am now 42.

As to leave no stone unturned due to my uncertainty, I made an

appointment with a lyme literate Dr. He tests with the Igenex test. The

soonest appointment was for the 19th of September so I must wait. In the

meantime I am to begin Rebif injections next week. I still plan to start

the injection just in case.

As individuals with lyme disease, what is your opinion? Did I mention

anything that should raise the red flag?

Generally, I have always felt good even with the ms symptoms. Many of

the lyme symptoms did not apply to me, yet I have health conditions

consistent with lyme hence my confusion.

Thank you for listening.

MightyMowth

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

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[Guest guest]

Hi MightyMowth,

Many people with Lyme are first diagnosed with MS, so your concern is

warranted. The symptoms are very similar.

It used to be that it MS was primarily a clinical diagnosis and if you

had an attack, you had to wait for a second one to confirm the

diagnosis. MRIs have made the diagnosis much easier.

Lyme is primarily a clinical diagnosis, but getting an Igenex test is

a good idea, as is seeing an LLMD. I assume you're also seeing a

neurologist.

My husband has MS, so I know quite a bit about it. Your optic neuritis

and other symptoms sound like MS (including fatigue, which can be

debilitating). Regardless of the cause of it, one would expect you to

respond to prednisone because it would reduce the inflammation that

was causing the neuritis.

I think it's still a toss up as to what you have. Don't settle on a

diagnosis until you've thoroughly explored every avenue, which it

sounds like you're doing.

Good luck,

Jessie

>

> As individuals with lyme disease, what is your opinion? Did I mention

> anything that should raise the red flag?

>

> Generally, I have always felt good even with the ms symptoms. Many of

> the lyme symptoms did not apply to me, yet I have health conditions

> consistent with lyme hence my confusion.

>

> Thank you for listening.

>

> MightyMowth

>

[Guest guest]

Surest way to find out is how you react to antibiotics. Do you feel

better, than worse or feel as if you are allergic to abxs? This should

give an indication if lyme.

Hi,

since I have mitral valve prolapse I only take antibiotics before going

to the dentist. I usually don't feel a difference in any way.

[Guest guest]

Hey, Mightymowth,

Is it possible for you to get a CD-57 done with your regular doctor

while you wait for the LLMD? Since Lyme is the only pathogen known to

depress this count, it can be helpful in differential diagnosis.

Hi,

I will ask my Dr. about the CD-57. I get blood tests on my liver

bi-weekly anyway so I am sure that he can add that one in. Thank you, I

had never heard of CD-57 until reading your response.

[Guest guest]

Hi MightyMowth,

Many people with Lyme are first diagnosed with MS, so your concern is

warranted. The symptoms are very similar.

Lyme is primarily a clinical diagnosis, but getting an Igenex test is a

good idea, as is seeing an LLMD. I assume you're also seeing a

neurologist.

My husband has MS, so I know quite a bit about it. Your optic neuritis

and other symptoms sound like MS (including fatigue, which can be

debilitating). Regardless of the cause of it, one would expect you to

respond to prednisone because it would reduce the inflammation that was

causing the neuritis.

Hi,

yes I also have a neurologist who feels that I should let the lyme

theory go since my spinal tap and westernblot was negative for lyme

titers. To be safe I will still see the llmd and take in all of my test

results for him to look over.

My optic neuritis responded well to the prednisone but my overall health

suffered. I am still not fully recovered and it truly concerned me

regarding lyme disease and steroids. I am scheduled to begin therapy

next week. My only symptoms now are hearing loss and numbness from the

waist down when I bend my neck. (L'hermittes) My MRI revealed a plaque

on my brainstem which controls the vision, hearing, and legs from the

8th cranial nerve.

The confusion is so draining. I will definately follow up with the llmd

to have peace of mind.

Thanks.

[Guest guest]

You probably don't take the abx long enough to notice an effect. Also,

abx prescribed for dental work are often different than abx prescribed

for Lyme.

Jessie

>

>

> Surest way to find out is how you react to antibiotics. Do you feel

> better, than worse or feel as if you are allergic to abxs? This should

> give an indication if lyme.

>

>

> Hi,

>

> since I have mitral valve prolapse I only take antibiotics before going

> to the dentist. I usually don't feel a difference in any way.

>

>

>

>

[Guest guest]

[ ] Newbie with some concerns

Hello,

I was recently diagnosed with MS last week after being hospitalized.

During my initial testing phase, I was also tested for Lyme disease

through a western blot and eliza test. I tested negative.

Although many of my symptoms coincide with lyme, they also coincide with

ms so I am now confused as to which disease I actually have.

A number of incidents occured that make me question my current

diagnosis.

1. I developed optic neuritis in the left eye and was given steroids for

the condition. I had a horrible reaction during and again 2 weeks after

tapering off of the prednisone.

2. I was diagnosed with lupus 6 years ago, mitral valve prolapse,

supraventricular tachycardia, chronic fatigue syndrome, fibromyalgia,

and now ms based on evoked potentials, mri, spinal tap, and clinical

history.

3. My hospitalization as a result of losing my hearing in my left ear.

My steroid reaction had me feeling like crap. I truly thought that I

would die but could not stop taking them without tapering. After that

horror I experienced more 2 weeks later when my hands and feet developed

tiny blisters which are now currently peeling. They wanted to give me IV

steroids in the hospital but I adamately refused.

The test findings which led to my ms diagnoses were multiple abnormal

signals in the white matter that were not classical for a demyalating

process but could not be ruled out. One obvious lesion was however found

on brainstem which warrants the vision and hearing loss.

The spinal tap was negative for lyme titers and ms protein bands but was

positive for showing an inflammation process.

I have never recalled being bitten by a tick but I have always been an

outdoors person. Fishing is my sport. I also once worked in a wooded

area at the age of 18, I am now 42.

As to leave no stone unturned due to my uncertainty, I made an

appointment with a lyme literate Dr. He tests with the Igenex test. The

soonest appointment was for the 19th of September so I must wait. In the

meantime I am to begin Rebif injections next week. I still plan to start

the injection just in case.

As individuals with lyme disease, what is your opinion? Did I mention

anything that should raise the red flag?

Generally, I have always felt good even with the ms symptoms. Many of

the lyme symptoms did not apply to me, yet I have health conditions

consistent with lyme hence my confusion.

Thank you for listening.

MightyMowth