Re: Scared :(

[Guest guest]

Tim,

These are all my symptoms of Lyme disease. I know it's scary and seems that it

will never end. However, with treatment, some of these things can be

controlled. I just tried a break in abx and experienced again the leg tremors,

fatigue, and insomnia. I have not control of motor skills at times and thinking

is out of the question (along with my attention span). When I returned to the

abx after a 2 day break, I have lost the tremors, but am back to weakness, joint

pain, swelling, and no matter what, always have the heart skips and poundings.

I start out with 200mg Doxy and work my way up to 600mg over a period of months,

depending on the relief the abx brings. This disease is scary. It is scary

just knowing that there's no cure and will always have to be maintained with

medications. But, we are not alone with this disease. There are thousands of

us and you can always count on a Lymer here to listen, have empathy, and direct

you, as best we can, to help that is available out in

the world. I find that doing things I like to do (not things I did before LD

because most of them are too difficult now), helps with the endless worry. I

find ways around the lost skills....ie. lists to remember things. From your

symptoms, I would definately suggest they are LD symptoms. But, you are doing

the right thing in getting to a physician and ruling out anything else. Also,

would have the doc check for co-infections. This will go a long way in getting

a handle on treatment.

Sue

piercethedrk <piercethedrk@...> wrote:

I don't feel like myself, it's the first thing I noticed.

The whole thing started in october 2003 when my brother came home

from NYU complaining of chest pain and heart pounding. I told him it

was probably lyme because when I got it 2 years ago much the same

thing happened to me. He got tested and came back Igenex and CDC

postive for IGM and IGG western blots.

Shortly thereafter I had this weird spell while I was in the car. I

could focus my eyes, it felt like somone was squeezing my brain, my

head felt like it was filled with bricks, and my coordination was

very poor. It lasted a few hours, then I recovered, so I decided to

get tested as well. On the 29th of november my doctor drew blood for

the test (which wouldn't be back for 2 weeks), and after that, the

spells continued and started to include muscle spasms, tremors and

my heart started pounding.

I told mom and I was rushed to the ER where they gave my IV rocephin

and vallium. After about an hour, whether from the rocephin or the

vallium, I was released, but not before the hospital tested me

positive for mono and lyme. I was ok for a little under a week but

then the spells continued off and on and included things like

tingling, being stabbed in the knee or the jaw, chills, but never a

consistant joint pain like I had last time.

No swollen nodes, no rash, no fever, no swollen joints. After a few

weeks, my doctor's test finally came back and the igg and igm

western blots were both cdc and igenex positive for lyme. I was on

antibiotics for a few weeks, but they didn't help.

My doctor suggested I contact my pediatric center who had treated my

for my lyme disease 2 years ago. So I made an appointment. In the

mean time the biaxin gave me a thrush infection. So I saw Dr. Serkes

with the pediatric center. He did a more accurate mono test, took me

off the antibiotics and sent me home with some xanax. He was a

complete moron and of the philosophy that 2-3 weeks of antibiotics

kills the bacteria.I wasn't happy. The mor accurate mono test came

back negative. Great. So I never had mono. But serkes insisted that

if anything I had post lyme syndrome.

So I made an appointment with another pediatrician from the center,

the same guy who saw me to years ago, Dr. Fabre. Dr Fabre looked at

the info and basically said " you have lyme " He gave me a

perscription of doxy, and had us set up an appointment with an

infectious disease specialist to see if further treatment would be

needed. I spent new year's day curled up on the couch with some kind

of malaise/chills spell. then I noticed an increase in panic

attacks, confusion, short term memory loss, I can't think at all, I

feel like a robot responding to my environment, I have no appetite,

I went from weighing 190-174 in less than six weeks,

I'm having serious tremors, occasional heart skips/shortness of

breath, when I try to sleep, I jolt awake either from a weird

thought or a spasm, I feel like there are sonic pulses going off in

my brain that rattle my head, my motor coordination is shot, I have

ringing in my ears, my legs are weak and spasming, I can barely walk

at times,my mind is a blank, and I've got decreased control of a few

muscles.

like I said, I'm worried I might have CJD or something. I know I've

been diagnosed with lyme and that it's the great immitatior, but

these symptoms are scary.

I see the specialist tommorow. Depending on what happens and if this

continues they may do spinal taps, more MRIs and brain imaging and

such. I'm worried. Think it's only lyme?

Like whether or not you need to have lyme encephalopathy to have

neuropsychiatric symptoms? And if it can be picked up on an MRI?

Anyway,Thanks alot.

-Tim

[Guest guest]

Dear Tim:

I'm sooo sorry to hear of your symptoms. Unfortunately, I've lived your story!!

Them ducks will keep testing you till the cows come home if you let them! Post

lyme my hind end! You probably never got rid of it in the first place!!

Please research more on 3rd stage lyme before you subject yourself to spinal

taps! They don't give as much info as you think. Most LLMD (lyme literate

medical doctors) don't require that invasive test!

You can also go to http://www.lymenet.org for additional support. There is tons

of helpful answers in their archives. They have a board you can post on too!

When I came down with lyme, they started in on my about doing brain surgery on

me! After just one visit to a LLMD, I stopped worrying. His assurances that this

is the way a 3rd stage patient behaves gave me hope!

I can't say what is going on with you. But I can say, I wouldn't trust a NON

LLMD to blow my nose! Save yourself a lot of stress and pain. See a LLMD asap! I

don't know what state you are in, or what kind of insurance you have, but you

are entitled to " appropriate " treatment.

I am fighting my insurance company to provide me with a doctor/hospital that has

knowledge of 3rd stage lyme.

That's my two cents! I'm attaching my recent press release for your review.

Please feel free to contact me if I can help you in any way.

You are not alone!! Hang in there!!!

Carol

Patient Fights Back!!

" fears HMO influencing patient care "

After years of unexplained illness and a very serious accident, NW Indiana

resident, Carol Kerr, began experiencing post-concussion symptoms. At the time

she was a full time employee and college student. She suddenly found herself

unable to work and drowning in medical bills. Her employer offered the option of

switching to an HMO plan which would eliminate the high out-of-pocket expenses

she was experiencing, but required her to use the HMO doctors. Upon further

checking, she found that her current doctors were on both plans, which relieved

her fear of having to seek another doctor while in crisis.

Her primary care provider (PCP) sent her to a neurologist which rendered

diagnostic testing, including a Lyme titers test. The neurologist did the Lyme

test because Carol was ill with spinal meningitis and encephalitis from a tick

bite in May 1974, the year before the discovery of borreliosis (Lyme disease) in

Lyme, CT. This raised great concern in Carol's mind as she had suffered much

unexplained sickness in her life since the tick bite, but had always been told

she couldn't be suffering illness from the incident with the tick. She raced

home and started making inquiries on the internet. Her research confirmed her

worst nightmare. Not only was illness from the tick bite possible, it was highly

probable based upon the fact that her symptoms mirrored those of a 3rd stage

Lyme patient. Tears still roll down her face when she thinks about all the time

and money she wasted, going from doctor to doctor looking for answers.

While researching she found that 3rd stage Lyme is not recognized or treated by

many physicians. She also learned that Lyme is known as " the great imitator "

because it mocks the symptoms of other diseases. Many believe that the high

MS/LUPUS occurrence rate in our area is solely due to the fact that the

physicians here don't know very little about acute Lyme and virtually nothing

about 3rd stage. One fact that presented repeatedly was that the CDC recommended

Lyme titer (ELISA) test is very inaccurate. It is only about 15% accurate. Not

recognizing this fact, many doctors rely solely on the titer test. The most

sensitive Lyme test available today is the Western Blot blood test, which checks

for Lyme specific antibodies in the blood stream. While there are still false

negatives and positives involved with this test, based upon various

circumstances, it is still the best available Lyme test we have right now.

Horrified by her discovery, but relieved to finally know what was going on,

Carol braced herself for the Lyme titers test result. As she expected it was

negative. She requested the doctor further test due to her symptoms. She tried

to give the doctor the information she had so carefully researched but he

refused to even look at it. Carol pointed out that Lyme was a clinical diagnosis

and the possibility of 3rd stage Lyme definitely made sense based upon her

symptoms. The doctor flat refused to even consider testing further, stating he

didn't know about Lyme and didn't WANT to! Her MRI showed spots on her brain and

the EEG revealed possible seizure activity, so the angry neurologist put her on

seizure medication, informed her that she could no longer drive and referred her

to a Chicago neurologist. It doesn't take a brain surgeon to see that he just

imposed another load of stress upon this already ill woman.

In an attempt to pass the buck, Carol was referred to Chicago for consultation

with an infectious disease (ID) specialist by her PCP, which then asked her to

find another PCP. She had been recommended to see a Lyme specialist in Missouri

by the folks at http://www.lymenet.com. Who, by the way, are the most loving

and supportive bunch of people on this earth! The prominent ID doctor looked

over the Lyme specialist's protocol and encouraged Mrs. Kerr to go to Missouri,

as he did not believe Lyme specialty treatment existed in the greater Chicago

area. Beaming with delight at having the approval of the " referred " doctor, she

went to the Lyme specialist for diagnosis and treatment. A western blot with 9

bands of Lyme specific antibodies confirmed her case.

This is when the trouble began.

The insurance company refused to honor the referral of the Chicago ID, despite

that fact that she was referred to him by her PCP. Carol presented the

specialists letters and test results, only to be told they wanted to send her

elsewhere for re-diagnosis. The supportive ID doctor wrote a letter to her

insurance company stating that he encouraged her to go in an attempt to get the

specialists services approved. Yet, they still refused to pay. The Lyme

specialist agreed to work with the PCP, and stated that he wanted Carol

monitored locally, but the PCP still would not cooperate!

The health management group stated her PCP had to refer her to the specialist.

When she tried to get the referral from her PCP's office, they refused and

talked of other avenues of treatment with doctors in network. The problem with

remaining in their network is St. Health Network doesn't have a Lyme

specialist available to their patients. Upon calling every PCP office in her HMO

provider book she found that NONE of the available PCP's had ever diagnosed or

treated a case of 3rd stage borreliosis. Yet, these Lyme-illiterate doctors are

the ones supposed to be making her medical decisions!

After having to switch PCP's twice over the situation, she became quite

concerned. Luckily she had been documenting her requests in writing while trying

to be as compliant as possible in her weakened condition. Carol's Lyme

specialist wrote letters supporting her diagnosis and requested specific testing

to help her, yet the PCP still refused to comply. In desperation she began

writing letters to her PCP and the HMO Network Manager. As if all of this wasn't

enough, her problems began to multiply! It took suffering yet another injury

before she was finally granted orthopedic care, which was in her opinion, " a day

late and a dollar short. " A HIDA scan showed she needed gallbladder surgery in

July. She is still awaiting referral to a surgeon.

She had read her policy book to the best of her ability and knew that if her HMO

did not have " appropriate " medical providers, she was supposed to be referred

out of network. Indiana state law requires HMO's to provide " appropriate and

timely " referrals. The more she complained the meaner the HMO representatives

behaved. The stress of the situation was taking its toll and Carol knew she had

to find resolve quickly.

Unfortunately, this process was slowed down by her frequent debilitating

illness. She was taken to St. Hospital ER on more than one occasion in

the past year. Each time she went to the hospital, she would explain the

horrendous symptoms she was plagued with daily and ask that the hospital staff

respect her special needs while treating her. The staff, having never heard of

her disorder caused her tremendous undo pain and stress by virtue of their

ignorance and lack of respect. Carol called and reported the ER neglect and

abuse, but her complaints fell upon deaf ears again. She began to suspect that

the HMO management office, located in the hospital, had more say so over her

treatment than the treating physicians. Then in confirmation of her suspicions

the HMO health management manager began demanding her release of medical records

so " they " could write her care plan.

Mrs. Kerr pointed out that she had already freely given her records to her

treating physician, as he was the one who was " supposed " to be planning her

care, and had no intention of sharing her personal medical file with anyone but

her PCP. In a move that smacked of retaliation, Pat Wesley, the director of the

St. Health Network wrote another letter to Mrs. Kerr threatening her

with expulsion from her medical group if she did not comply with her demands.

" I don't know what you call that, but where I come from; we call that move

blackmail, " commented Mrs. Kerr.

Based upon the heath group administrator's move, Mrs. Kerr was left with no

choice but to file her case with the Indiana Commission of Insurance and the

State Attorney General's Office for official investigation. Mrs. Kerr stated

that she has documented proof that her HIPA law rights have been violated. She

is making this issue public and seeking qualified legal representation in hopes

of further raising public awareness about the issue of 3rd stage Lyme

misdiagnosis as well as the rights of HMO patients and the responsibilities of

HMO providers.

Mrs. Kerr was quoted saying, " Lyme disease is a serious, immune compromising

disease. Treatment varies from person to person. Many relapse after insufficient

treatment. Left untreated it will slowly infect both your body and brain. Lyme

was discovered 30 years ago and it's a travesty that Indiana hospitals and

doctors aren't actively seeking the necessary education to diagnose and treat

all three stages of the disease after all this time. " Carol also noted that

though the hospital staff claims to know nothing of 3rd stage Lyme disease, they

prominently display warning flyers about the " newly emerging " West Nile Virus.

For more information about this story, please contact:

Carol Kerr

Phone/Fax (219) 345-5671

[Guest guest]

Hi Tim,

I know about the scary part, because I have the same symtoms, but I

have Lyme and nothing else. If it will help the scared feeling, you

just descibed alot of people's symtoms from Lyme disease. You will

still be miserable, but it really sounds like my symtoms from only

Lyme disease.

Good luck, and my prayers for you!

>

> I don't feel like myself, it's the first thing I noticed.

> The whole thing started in october 2003 when my brother came home

> from NYU complaining of chest pain and heart pounding. I told him

it

> was probably lyme because when I got it 2 years ago much the same

> thing happened to me. He got tested and came back Igenex and CDC

> postive for IGM and IGG western blots.

> Shortly thereafter I had this weird spell while I was in the car.

I

> could focus my eyes, it felt like somone was squeezing my brain,

my

> head felt like it was filled with bricks, and my coordination was

> very poor. It lasted a few hours, then I recovered, so I decided

to

> get tested as well. On the 29th of november my doctor drew blood

for

> the test (which wouldn't be back for 2 weeks), and after that, the

> spells continued and started to include muscle spasms, tremors and

> my heart started pounding.

> I told mom and I was rushed to the ER where they gave my IV

rocephin

> and vallium. After about an hour, whether from the rocephin or the

> vallium, I was released, but not before the hospital tested me

> positive for mono and lyme. I was ok for a little under a week but

> then the spells continued off and on and included things like

> tingling, being stabbed in the knee or the jaw, chills, but never

a

> consistant joint pain like I had last time.

> No swollen nodes, no rash, no fever, no swollen joints. After a

few

> weeks, my doctor's test finally came back and the igg and igm

> western blots were both cdc and igenex positive for lyme. I was on

> antibiotics for a few weeks, but they didn't help.

> My doctor suggested I contact my pediatric center who had treated

my

> for my lyme disease 2 years ago. So I made an appointment. In the

> mean time the biaxin gave me a thrush infection. So I saw Dr.

Serkes

> with the pediatric center. He did a more accurate mono test, took

me

> off the antibiotics and sent me home with some xanax. He was a

> complete moron and of the philosophy that 2-3 weeks of antibiotics

> kills the bacteria.I wasn't happy. The mor accurate mono test came

> back negative. Great. So I never had mono. But serkes insisted

that

> if anything I had post lyme syndrome.

> So I made an appointment with another pediatrician from the

center,

> the same guy who saw me to years ago, Dr. Fabre. Dr Fabre looked

at

> the info and basically said " you have lyme " He gave me a

> perscription of doxy, and had us set up an appointment with an

> infectious disease specialist to see if further treatment would be

> needed. I spent new year's day curled up on the couch with some

kind

> of malaise/chills spell. then I noticed an increase in panic

> attacks, confusion, short term memory loss, I can't think at all,

I

> feel like a robot responding to my environment, I have no

appetite,

> I went from weighing 190-174 in less than six weeks,

> I'm having serious tremors, occasional heart skips/shortness of

> breath, when I try to sleep, I jolt awake either from a weird

> thought or a spasm, I feel like there are sonic pulses going off

in

> my brain that rattle my head, my motor coordination is shot, I

have

> ringing in my ears, my legs are weak and spasming, I can barely

walk

> at times,my mind is a blank, and I've got decreased control of a

few

> muscles.

> like I said, I'm worried I might have CJD or something. I know

I've

> been diagnosed with lyme and that it's the great immitatior, but

> these symptoms are scary.

> I see the specialist tommorow. Depending on what happens and if

this

> continues they may do spinal taps, more MRIs and brain imaging and

> such. I'm worried. Think it's only lyme?

> Like whether or not you need to have lyme encephalopathy to have

> neuropsychiatric symptoms? And if it can be picked up on an MRI?

> Anyway,Thanks alot.

>

> -Tim

[Guest guest]

unforntainly this is normal ! alot of people have there heart stop or go into v-fib with is actaly known as the death rythmia your husbind is lucky he had his icd ! i know it must be scarey for you to see him going though all this and thats normal i'm sorry to hear that his haert stoped and needed restarted but i'm glad hes still there with you i bet you love him alot and i bet hes problemly just as scared as you are and thats normal the thing to remindber is thats with fear comes joy with joy come happeness and with happyniess comes life ! and he and you both ahve alot of life welvcoem and take care ! stacie 24 shockign life for shockign people !cook4andy <cook4andy@...> wrote: My husband had an Medtronic ICD implanted last year.He has been shocked twice in the past, both while asleep. Until yesterday. One minute he was by the gate closing it the next he was lying on the ground out. When he got up he didn't remember anything but feeling dizzy before he passed out.Thanks to his ICD, he is still with us!!!!I called 911 and he was admitted. The thing that worries me is he called me last night and said the admitting doctor told him he died :(If it wasn't for his device he wouldn't be with us.I'm sorry I'm new to all this and I know the ICD's shock your heart back into rhythm, only I never knew you could actually die and be brought back. My question is: is this

normal?Any input will be greatly appreciated!!Best wishes to all!!

[Guest guest]

Thank you for your input! Yes, I feel very blessed that he is still

with us!!!

He has a long history of heart disease. He had a triple bypass when

he was in his early thirties back in 1983.

And I had to talk him into being seen in the ER when the ICD was

implanted. He was having shortness of breath " worse than usual " and

bad water retention. He finally agreed to go and when admitted his

heart rate was way low, 36 I beleive. If it wasn't for his ICD, he

would not be with us today.

Thanks again for your input and best wishes to you!

>

> This is normal and that is why we have our ICD's -- it is our

insurance policy. Most people to do survive SCD and your hubby is

one of the lucky ones, sounds like two times over. The ICD's step in

when the heart rythum does not return to normal in a few seconds,

then the ICD tries to pace the rhythm back to normal and when that

does not work, a few more second the ICD then delivers it shock, and

will continue to try for 6 times, until the heart returns to normal

rhythm. Once the heart return to normal rhythm, just for a few more

beats, the ICD " resets " itself for another 6 shocks, until the heart

returns to normal rhythm. I hope I explained that well. Most people

think that your ICD only fires 6 times and you are dead. That is the

case sometimes, but if your beat returns to normal rhythm, even for a

couple of second, the ICD resets itself. So not to worry if you've

already had 6 shocks.

>

> Yes, our ICD's are a wonderful thing and in your hubby's case it

was worth every penny spent! It saved his life!

> I had a friend who had thirty shocks while being airlifted to her

hospital - she thought the ICD was malfunctioning -- the Docs told

everyone of her shocks were appropriate and the ICD did what it was

suppose to do! It took some time to emotionally get over that but

she and ICD are fine now!

> Happy Thanksgiving!

> ~guin

>

>

> Scared

>

>

> My husband had an Medtronic ICD implanted last year.

>

> He has been shocked twice in the past, both while asleep. Until

> yesterday. One minute he was by the gate closing it the next he

was

> lying on the ground out. When he got up he didn't remember

anything

> but feeling dizzy before he passed out.

>

> Thanks to his ICD, he is still with us!!!!

>

> I called 911 and he was admitted. The thing that worries me is he

> called me last night and said the admitting doctor told him he

died

>

> If it wasn't for his device he wouldn't be with us.

>

> I'm sorry I'm new to all this and I know the ICD's shock your

heart

> back into rhythm, only I never knew you could actually die and be

> brought back. My question is: is this normal?

>

> Any input will be greatly appreciated!!

>

> Best wishes to all!!

>