Re: Hi has anybody in this group developed Bells Palsey

[Guest guest]

Hi, prayers for you. My mom came down with this in July. I had just found

out I had lyme that spring and suspected she had it, and when I saw the sudden

onset of the exact symptoms you describe, had her tested and she was highly

positive. she was also misdiagnosed by the ER and several drs. I asked her

internist to start her on doxy, and she was better within days. within one

month, her bells palsy was gone, although the affected eye continues to water

like crazy. she has been on doxy for six mos now. She is completely over it,

eyeball no longer paralyzed, no facial drooping. her eye also was extremely

painful when the palsy came on, but it went away quickly too. We also had

lots and lots of people praying for her.

In a message dated 12/27/2006 5:57:25 P.M. Eastern Standard Time,

mkb073@... writes:

I was diagnosed with lymes august/06 after being hospitalized for 9

days and testing negative,a later blood test was positive,while in

hospital entire side of my face became paralysed and drooped.My eye and

mouth were really bad.I had 21 days of ivs. with no improvement-mouth were

last month I have had a dramatic improvement though still have a

crooked face,but at least I wont have to have my eye stitched as Drs.

wanted me to do.Has anyone here had similar experience. Of course I'm

so terribly tired all of the time.

[Guest guest]

Hi- thank you so much for your response-I'm from

catskill NY. what is the Doxy your mother takes? Is it

an oral antibotic? Im not on anything now-wondering if

they had started my IV earlier(was a month after it

started and I was hospitalized-they first thought I

had a stroke-terrible head ache-swelling and pressure

behind eye-was on morphine then steroids-even had an

angiagram of brain to see if bleeding)lyme test in

hosp. was neg.-a week after i was released my dr. did

again & it was pos.-in hosp. I also developed

rash,they said must be contact rash)

would I have gotten over this.I came down with this

July 9 started IV aug.9 should i be seeing a

specialist i did see an infectious disease dr,who

ordered IV.no longer see him,told me it was just a

matter of time-

--- beaugeored@... wrote:

>

> Hi, prayers for you. My mom came down with this in

> July. I had just found

> out I had lyme that spring and suspected she had it,

> and when I saw the sudden

> onset of the exact symptoms you describe, had her

> tested and she was highly

> positive. she was also misdiagnosed by the ER and

> several drs. I asked her

> internist to start her on doxy, and she was better

> within days. within one

> month, her bells palsy was gone, although the

> affected eye continues to water

> like crazy. she has been on doxy for six mos now.

> She is completely over it,

> eyeball no longer paralyzed, no facial drooping.

> her eye also was extremely

> painful when the palsy came on, but it went away

> quickly too. We also had

> lots and lots of people praying for her.

>

> In a message dated 12/27/2006 5:57:25 P.M. Eastern

> Standard Time,

> mkb073@... writes:

>

>

>

>

> I was diagnosed with lymes august/06 after being

> hospitalized for 9

> days and testing negative,a later blood test was

> positive,while in

> hospital entire side of my face became paralysed and

> drooped.My eye and

> mouth were really bad.I had 21 days of ivs. with no

> improvement-mouth were

> last month I have had a dramatic improvement though

> still have a

> crooked face,but at least I wont have to have my eye

> stitched as Drs.

> wanted me to do.Has anyone here had similar

> experience. Of course I'm

> so terribly tired all of the time.

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Oh the steroids are bad, you should arrange to stop taking them. they allow

the lyme to run amok. I was misdiagnosed for years with 'autoimmune

inflammation' and given steroids, humira, all of which nearly killed me.

because it

promotes the growth of the lyme etc.

Yes doxycycline is an oral abx, and yes it costs just dollars. I went

through years of misdiagnosis and huge expensive tests, several cats scans,

mris

etc. and in the end it was a 2$ bottle of doxy that started getting me better

(plus prayers of course)

I thought the iv you were on was iv abx??? If it was abx it may have been

too short a course to heal the palsy. simple doxy worked for my mom. she has

been on it six mos now and was all better after four weeks.

they also thougth she was having a stroke, did several mris and cat scans on

her. my mom was also in agonizing pain behind the eye, and she got a strong

codeine pill which she promptly threw up each time. I stayed several nights

in her nursing home in the beginning, just applying hot damp compresses over

her eye, which helped the pain to go down. Her first ER drs misdiagnosed

her, the first one sent her home with eye drops, can you imagine? I was on

vacation when she first got ill, but rushed home as soon as I found out, and

even

I knew it was bells palsy, and that she must have lyme, and so I got her

tested and yes she had lyme. I took her to several neurologists, and they

misdiagnosed it as stroke, then third nerve palsy, then the third one got it

right

as bells palsy.

what was in your IV? did you get any abx yet at all since the onset of this

palsy??????

In a message dated 12/28/2006 8:57:57 A.M. Eastern Standard Time,

ponyrubs@... writes:

Hi- thank you so much for your response-I'm from

catskill NY. what is the Doxy your mother takes? Is it

an oral antibotic? Im not on anything now-wondering if

they had started my IV earlier(was a month after it

started and I was hospitalized-started and I was ho

had a stroke-terrible head ache-swelling and pressure

behind eye-was on morphine then steroids-even had an

angiagram of brain to see if bleeding)lyme test in

hosp. was neg.-a week after i was released my dr. did

again & it was pos.-in hosp. I also developed

rash,they said must be contact rash)

would I have gotten over this.I came down with this

July 9 started IV aug.9 should i be seeing a

specialist i did see an infectious disease dr,who

ordered IV.no longer see him,told me it was just a

matter of time-

[Guest guest]

Hi, Mickey B,

I hope you can find an LLMD and get back on treatment. Part of the reason for

your treatment failure might be the steroids. They depress your immune system

and allow the bug to get a deeper foothold. Steroids are absolutely

contraindicated in Lyme Disease.

The doxy people here talk about is doxycycline - an oral antibiotic. It is

cheap - one of the $4 drugs at Walmart. It is effective for many of us. For

me, it is my magic bullet. I feel better on doxy than on anything else.

One reason doxy is used is that it is also effective against many co-infections.

It will get rid of erlichia, and it has some effect against bartonella. You

probably should get tested for these, as well as babesia, before going back on

antibiotics.

If you cannot find an LLMD right away, or if there is a wait period, you can

order a test kit from IgeneX in Palo Alto California, and have the tests drawn

at a local lab. Your ID specialist won't probably set much store by them,

thanks to the controversy, but they will give you a good base line, and they

will be helpful to your LLMD, once you find one. Try at least to get your

regular doc to run a CD-57 (Stricker Panel NK CD-57 from LabCorp or PathLab -

not from Quest). That is a very good indication of current active borrelia

infection.

I had a very, very mild bells palsy. I didn't even realize it until I was

trying to get a decent photo of myself for an ID. My right eyelid was drooping,

but not enough to notice during normal activities - just in a freeze frame.

Weird.

If you need help locating an LLMD, just repost here with, " LLMD Needed in

Catskill, NY " in the subject line. Meanwhile, try to find a primary care doc

who believes in diagnosing and treating chronic lyme disease - not treating it

themselves necessarily, but not thinking you're deluded. They are out there.

I've found that very often DOs (Osteopaths) are more likely to think outside the

IDSA box than MDs. It helps to have one of these PCPs on your side, rather than

rolling their eyes and tsk tsking every time you come for a visit.

Good luck!!! Welcome to the group no one really wants to join.

D.

Mickey B <mkb073@...> wrote: Hi- thank you so much for your response-I'm

from

catskill NY. what is the Doxy your mother takes? Is it

an oral antibotic? Im not on anything now-wondering if

they had started my IV earlier(was a month after it

started and I was hospitalized-they first thought I

had a stroke-terrible head ache-swelling and pressure

behind eye-was on morphine then steroids-even had an

angiagram of brain to see if bleeding)lyme test in

hosp. was neg.-a week after i was released my dr. did

again & it was pos.-in hosp. I also developed

rash,they said must be contact rash)

would I have gotten over this.I came down with this

July 9 started IV aug.9 should i be seeing a

specialist i did see an infectious disease dr,who

ordered IV.no longer see him,told me it was just a

matter of time-

__________________________________________________

[Guest guest]

My mother had Bell's palsy when she was hospitalized with Lyme several years

ago. She was accurately diagnosed--they did a spinal tap which is the most

definitive test, I believe. It took a couple weeks for her Bell's to

improve. She also was treated for Guillain-Barre Syndrome which caused

paralysis of

her legs. This was treated with IV immune globulin. She was then on IV abx

at home for approx. 6 wks, but she had to spend time in rehab with lots of

physical therapy to regain use of her legs.

Patti

[Guest guest]

Stricker just gave me ivig, and warning to other lyme patients, I got

deathly ill from it. it was called immune complex reaction, where the ivig

binds

with the lyme antigens, and creates excruciating agonizing pain, and organ

damage.

In a message dated 12/30/2006 9:13:33 A.M. Eastern Standard Time,

RLeach2899@... writes:

This was treated with IV immune globulin. She was then on IV

[Guest guest]

Hi Janet,

When first ill I spoke to 3 different nurses. They worked at a local

hospital. Renovations were underway. Smells, things blowing all over, not

good

ventilation. Anyway, some got sick, 3 did not recover went into EBV, Gillian

barre. They eventually got better. Very scary.

I was given a diagnosis of Chronic Fatigue Syndrome. So was my friend who

went on to develop Bell's Palsy.

Years later after attending a seminar here in New Orleans by two doctors

who saw lots of fibro. CFIDS patients, etc., things were said that led me back

to my Infectious Disease doctor who ran more tests-and I showed up with Lyme

Disease. He followed that Western Blot with IgeneX Lab testing from CA. Lots

of +/- and some positives from there. They I.V.'d me with Rocephin as it

crosses the blood brain barrier. They learn as they go.

If you lay the symptoms of Lyme next to those of CFIDS, it's eerie how

familiar they are.

One is caused by the bite of a tick infected with Lyme and co infections at

times, another by??????????? viral? bacterial.?

There are certain doctors out there I've followed who know believe CFIDS/

CFS is really Lyme misdiagnosed. Others feel maybe some Lyme patients really

have CFIDS. Me, I just wish all the patients could get together and see about

onset, symptoms, what we had in common and figure something more definitive

out.

Sincerely,

_Sc@..._ (mailto:Sc@...)

[Guest guest]

I was diagnosed with Lyme last summer (in its early stage). I have a question

regarding the problems that you described your mother as having had with her

legs. I have begun to have some problems with my legs. Do people on Lyme have to

stay on antibiotics for the long term? I mean, is it ever possible to go off

antibiotics, if the disease had already progressed a bit? (I had reached the

limping stage last summer).

RLeach2899@... wrote: My mother had Bell's

palsy when she was hospitalized with Lyme several years

ago. She was accurately diagnosed--they did a spinal tap which is the most

definitive test, I believe. It took a couple weeks for her Bell's to

improve. She also was treated for Guillain-Barre Syndrome which caused

paralysis of

her legs. This was treated with IV immune globulin. She was then on IV abx

at home for approx. 6 wks, but she had to spend time in rehab with lots of

physical therapy to regain use of her legs.

Patti

[Guest guest]

Why would you get this? What causes the problems? Can you explain more?

At 10:50 AM 12/30/2006, you wrote:

>Stricker just gave me ivig, and warning to other lyme patients, I got

>deathly ill from it. it was called immune complex reaction, where

>the ivig binds

>with the lyme antigens, and creates excruciating agonizing pain, and organ

>damage.

>

>

>

>In a message dated 12/30/2006 9:13:33 A.M. Eastern Standard Time,

><mailto:RLeach2899%40aol.com>RLeach2899@... writes:

>

>This was treated with IV immune globulin. She was then on IV

>

>

[Guest guest]

My mother was not on the abx long term. Ever since the Lyme episode,

though, she has had worsening neurological problems--memory and cognitive

problems.

I'm taking her to an LLMD for the first time in April to see if we can find

out if her problems are from Lyme or some other type of dementia. None of

her neurological tests point to Alzheimer's disease.

She still has some residual weakness in her left leg from Lyme, but it is

only after she gets tired. Once she finished her IV abx and physical therapy,

her leg problems resolved, except for the slight weakness. It's hard to know

if her other aches and pains are Lyme related because she is 75 years old

and has some arthritis, but we want to see if going on antibiotics again might

possibly help her memory troubles. It's worth a shot, anyway.

Patti

[Guest guest]

Hi, Janet,

Caught early, Lyme is very treatable, and most people do well with no further

need for antibiotics. You say yours was caught in an early stage. How early?

Did you know you had been bitten? How was it treated?

Even with chronic cases, many of us do get better and go off antibiotics. It

can take months or years, and we all respond differently depending on treatment

choices, our own over-all health, individual immune systems, co-infections, the

strain of borrelia, and other factors including diet, exercise (if able),

adjunct therapies (Salt/C, herbs, heat, etc), mental outlook... The list goes

on.

And there are those who have to stay on antibiotics. For them, hopefully new

research will provide better treatment options.

For myself, I've probably been infected for at least 18 years, possibly closer

to 40. I've been treating it with antibiotics for just over a year, and I am

doing well enough that I think the end is in sight. It is many months away, but

I am getting better and better with only minimal backsliding, and I have days

when I feel completely well.

Once I have been symptom-free for two months, I'll stop the antibiotics. But

I'll always continue the adjunct therapies. For me, that will be a maintenance

dose of Buhner's herbal protocol and daily exercise and heat therapy. I don't

think you can completely get rid of the bacteria once it is well-established, so

it is very important to help your body to keep it under control.

That's my plan, anyway.

D.

janet manton <manton_janet@...> wrote: I was diagnosed with Lyme last

summer (in its early stage). I have a question regarding the problems that you

described your mother as having had with her legs. I have begun to have some

problems with my legs. Do people on Lyme have to stay on antibiotics for the

long term? I mean, is it ever possible to go off antibiotics, if the disease had

already progressed a bit? (I had reached the limping stage last summer).

__________________________________________________