New to List and could use some advice

[Guest guest]

Hi,

First off, I am new to the list, my name is Carlene, I am from Moundsville,

WV. I have a daughter who was bitten by a tick in 1988, a few weeks later she

developed the bulls eye rash, and an array of symptoms kept popping up over

the next several years. No doctor could figure out what was wrong with her,

they kept passing her back and forth like a football. Finally, in 1993 I had

some friends say to me " Carlene, I really think is suffering from

Lyme Disease. " I went and investigated this, found a doctor who treats Lyme

in the NJ area. I took to him, and he could not believe the

condition she was in. Said it was the typical Bulls Eye Rash and did a

Gunderson Lyme Test on her which came back positive. Well, we had a fight

without insurance - they would not let her go to him. In the mean time,

kept getting worse and to the point she developed a 105 temperature.

I tried to battle this with Tylenol for a week (you probably know the story,

she is so scared of what doctors will say or do to her she would not go). I

finally called our local ER and they said I had no choice but to bring her

in. The ER Doctor was infuriated as to the shape she was in (mad at the

doctors for letting it get this out of hand and mad at the insurance co. for

not letting her go to someone who could help her). He found a local doctor

who was willing to help her. She was immediately put on IV Rocephin and

Clafforin. She finally started felling better and was able to live like a

normal kid again ... until she would catch some bug going around, then it was

back to phase one again. We battled illness, IV, illness, IV, and so on for a

few years. Then, her heart became involved, and she was sent out to be looked

at. These doctors would fight, " She has Lyme, no she has Lupus, no she has

Chronic Fatigue, no she has Lyme. " Then there's the one " She had Lyme it is

better ow and there is some other disease process here but we do not know

what. " And this is still going on (I probably did not mention that she has

also had positive Lupus tests, ANA with different patterns, and a COOMBS

Test).

My big question, does anyone have an extremely fast heart rate (goes up to

218, documented) with valve problems, low blood pressure, and passing out?

Our Cardiologists and ECPs say this does not happen from Lyme. She has

recently underwent an ablation and most of her Sinus node was destroyed, the

doctor said if he went further she would need a pacer, and her heart problems

are still not improved. She also has the headaches, joint pains and swelling,

fevers in the evenings, GI problems, and the list could go on. I need to find

out what exactly is the problem and find some doctor out there willing to

help her.

Any info. would be greatly appreciated.

Thanks!

Carlene

[Guest guest]

In a message dated 4/21/99 6:43:22 PM Eastern Daylight Time,

BeanLadyC@... writes:

<< p to

218, documented) with valve problems, low blood pressure, and passing out?

Our Cardiologists and ECPs say this does not happen from Lyme. She has

recently underwent an ablation and most of her Sinus node was destroyed, the

doctor said if he went further she would need a pacer, and her heart

problems

are still not improved. She also has the headaches, joint pains and

swelling,

fevers in the evenings, GI problems, and the list could go on. I need to

find

out what exactly is the problem and find some doctor out there willing to

help her. >>

Your daughters story saounds very similar to mine. Has she ever been tested

for co-infections. I just found out that I have babesia and echriolis with

the Lyme. They are both tick borne illnesses and some doctors do not know

enough to test for them. I saw three different doctors before my present one

and they didn't even mention it. My heart rate is also very fast and the

cardiologists said it's not from Lyme. He could be right, but my Lyme doctor

told me that most cardiologists know very little about Lyme. When I first

got sick my Lupus test came back postive speckled patterns.. A doctor

specailizing in Lupus said that I didn't have it and It came out postive

since my immune system was so out of wack from the Lyme. PLEASE have your

daughter get tested for those co-infections. I would bet you she has Babesia

from her high fevers at night. The tests are done from Ignex lab. It's

alittle expensive, but I think it's worth it. If you want please feel free

to e-mail me. I would like to try and help since your daughter's story and

symtoms are very simial to mine. I had a bulls eye rash in 1988 when I was

15 and my family doctor told me it was posion ivy. I hope she feels better.

[Guest guest]

Hi Carlene,

Welcome to the list. Golly you have been thru the mill.

just keep educating yourself and you will help yourself and your family.

Hugs,

Connie MI

[Guest guest]

Welcome to the list Carlene,

Poor , what a story. It breaks my heart that this poor child

has gone through all this from this lousy disease. I hope someone on the

list can answer some of your questions about the heart rate etc...

I just checked on the LymeNet abstract page and found lots of information.

Here are some of the articles I have found:

The Lyme Disease Network

Medical / Scientific Literature Database

Search Results

The following references met your criteria:

[1] PROSPECTIVE EVALUATION OF HEART BLOCK COMPLICATING EARLY LYME DISEASE.

Authors: Rubin DA Sorbera C Nikitin P McAllister A Wormser GP Nadelman RB

Source: PACE Pacing Clin Electrophysiol 1992 Mar;15(3):252-5

[2] PERSISTENT CARDIAC AND URINARY TRACT INFECTIONS WITH BORRELIA

BURGDORFERI IN EXPERIMENTALLY INFECTED SYRIAN HAMSTERS.

Authors: Goodman JL Jurkovich P Kodner C RC

Source: J Clin Microbiol 1991 May;29(5):894-6

[3] EXPRESSION OF ENDOTHELIAL CELL ADHESION MOLECULES IN JOINTS AND HEART

DURING BORRELIA BURGDORFERI INFECTION OF MICE.

Authors: Schaible UE Vestweber D Butcher EG Stehle T Simon MM

Source: Cell Adhes Commun 1994 Dec;2(6):465-79

[4] ACUTE REVERSIBLE DIFFUSE CONDUCTION SYSTEM DISEASE DUE TO LYME DISEASE.

Authors: Rubin DA Sorbera C Baum S McAllister A Nadelman R

Source: PACE Pacing Clin Electrophysiol 1990 Nov;13(11 Pt 1):1367-70

[5] TEMPORARY DECREASE IN HEART RATE IN LYME CARDITIS DURING TREATMENT WITH

ANTIBIOTICS.

Authors: Dam EP Jonker DR Hoorntje JC

Source: Heart 1996 Sep;76(3):289-90

[6] LACK OF CARDIAC MANIFESTATIONS AMONG PATIENTS WITH PREVIOUSLY TREATED

LYME DISEASE.

Authors: Sangha O CB Fleischmann KE Wang TJ Fossel AH Lew R Liang

MH Shadick NA

Source: Ann Intern Med 1998 Mar 1;128(5):346-53

[7] LYME CARDITIS: AN IMPORTANT CAUSE OF REVERSIBLE HEART BLOCK [sEE

COMMENTS]

Authors: McAlister HF Klementowicz PT s C Fisher JD Feld M Furman S

Source: Ann Intern Med 1989 Mar 1;110(5):339-45

[8] COMPARISON OF POLYMERASE CHAIN REACTION WITH CULTURE AND SEROLOGY FOR

DIAGNOSIS OF MURINE EXPERIMENTAL LYME BORRELIOSIS.

Authors: Pachner AR Ricalton N Delaney E

Source: J Clin Microbiol 1993 Feb;31(2):208-14

[9] CASE CONFERENCE: COMPLETE HEART BLOCK IN A YOUNG MAN [CLINICAL

CONFERENCE]

Authors: Huff JS Syverud SA Tucci MA

Source: Acad Emerg Med 1995 Aug;2(8):751-6

[10] THE HEART AS A TARGET ORGAN OF IMMUNE INJURY.

Authors: Hastillo A Willis HE Hess ML

Source: Curr Probl Cardiol 1991 Jun;16(6):377-442

[11] LYME BORRELIOSIS AS A CAUSE OF MYOCARDITIS AND HEART MUSCLE DISEASE.

Authors: Klein J Stanek G Bittner R Horvat R Holzinger C Glogar D

Source: Eur Heart J 1991 Aug;12 Suppl D:73-5

[12] LYME DISEASE PRESENTING AS HEART BLOCK.

Authors: Kishaba RG Weinhouse E Chusid MJ Nudel DB

Source: Clin Pediatr (Phila) 1988 Jun;27(6):291-3

[13] TEMPORARY PACING IN COMPLETE HEART BLOCK DUE TO LYME DISEASE: A CASE

REPORT.

Authors: L:orincz I Lakos A Kov:acs P V:arv:olgyi C Polg:ar P W:orum F

Source: PACE Pacing Clin Electrophysiol 1989 Aug;12(8):1433-6

[14] CARDITIS IN LYME DISEASE SUSCEPTIBLE AND RESISTANT STRAINS OF

LABORATORY MICE INFECTED WITH BORRELIA BURGDORFERI.

Authors: Armstrong AL Barthold SW Persing DH Beck DS

Source: Am J Trop Med Hyg 1992 Aug;47(2):249-58

[15] BORRELIA BURGDORFERI AS AN ETIOLOGIC AGENT IN CHRONIC HEART FAILURE?

Authors: Stanek G Klein J Bittner R Glogar D

Source: Scand J Infect Dis Suppl 1991;77:85-7

[16] KINETICS OF BORRELIA BURGDORFERI DISSEMINATION AND EVOLUTION OF

DISEASE AFTER INTRADERMAL INOCULATION OF MICE.

Authors: Barthold SW Persing DH Armstrong AL Peeples RA

Source: Am J Pathol 1991 Aug;139(2):263-73

[17] DEMONSTRATION OF SPIROCHETES IN CARDIAC BIOPSIES OF PATIENTS WITH LYME

DISEASE.

Authors: de Koning J Hoogkamp-Korstanje JA van der Linde MR Crijns HJ

Source: J Infect Dis 1989 Jul;160(1):150-3

[18] COMPLETE HEART BLOCK AS THE SOLE PRESENTATION OF LYME DISEASE [sEE

COMMENTS]

Authors: Kimball SA Janson PA LaRaia PJ

Source: Arch Intern Med 1989 Aug;149(8):1897-8

[19] COMPLETE HEART BLOCK IN A DOG SEROPOSITIVE FOR BORRELIA BURGDORFERI.

SIMILARITY TO HUMAN LYME CARDITIS.

Authors: Levy SA Duray PH

Source: J Vet Intern Med 1988 Jul-Sep;2(3):138-44

[20] RANGE OF ATRIOVENTRICULAR CONDUCTION DISTURBANCES IN LYME BORRELIOSIS:

A REPORT OF FOUR CASES AND REVIEW OF OTHER PUBLISHED REPORTS.

Authors: van der Linde MR Crijns HJ de Koning J Hoogkamp-Korstanje JA de

Graaf JJ Piers DA van der Gali:en A Lie KI

Source: Br Heart J 1990 Mar;63(3):162-8

[21] LOCALIZATION OF BORRELIA BURGDORFERI IN MURINE LYME BORRELIOSIS BY

ELECTRON MICROSCOPY.

Authors: Pachner AR Basta J Delaney E Hulinska D

Source: Am J Trop Med Hyg 1995 Feb;52(2):128-33

[22] FATAL LYME CARDITIS AND ENDODERMAL HETEROTOPIA OF THE ATRIOVENTRICULAR

NODE [PUBLISHED ERRATUM APPEARS IN POSTGRAD MED J 1990 MAR;66(773):258]

Authors: Cary NR Fox B DJ Cutler SJ Shapiro LM Grace AA

Source: Postgrad Med J 1990 Feb;66(772):134-6

[23] EARLY DISSEMINATED LYME DISEASE: CARDIAC MANIFESTATIONS.

Authors: Sigal LH

Source: Am J Med 1995 Apr 24;98(4A):25S-28S; discussion 28S-29S

[24] COMPLETE HEART BLOCK IN A 9 YEAR OLD GIRL CAUSED BY BORRELIOSIS.

Authors: Gildein HP Gunther S Mocellin R

Source: Br Heart J 1993 Jul;70(1):88-90

[25] HERITABLE SUSCEPTIBILITY TO SEVERE BORRELIA BURGDORFERI-INDUCED

ARTHRITIS IS DOMINANT AND IS ASSOCIATED WITH PERSISTENCE OF LARGE NUMBERS OF

SPIROCHETES IN TISSUES.

Authors: Yang L Weis JH Eichwald E Kolbert CP Persing DH Weis JJ

Source: Infect Immun 1994 Feb;62(2):492-500

To read these abstracts just go to the Lymenet page, the URL is below. On

the left side of the screen click on SEARCH, type in heart, and it will

bring up all these articles. You can click on each one for more

information. Hope this helps. Please keep us posted on 's

progress.

Best to you,

Marta

The Lyme Disease Network of NJ, Inc.

43 Winton Road

East Brunswick, NJ 08816

http://www.lymenet.org/

>From: BeanLadyC@...

>

>Hi,

>First off, I am new to the list, my name is Carlene, I am from Moundsville,

>WV. I have a daughter who was bitten by a tick in 1988, a few weeks later

she

>developed the bulls eye rash, and an array of symptoms kept popping up over

>the next several years.

[Guest guest]

In a message dated 4/21/99 5:43:27 PM Central Daylight Time,

BeanLadyC@... writes:

<< My big question, does anyone have an extremely fast heart rate (goes up to

218, documented) with valve problems, low blood pressure, and passing out?

Our Cardiologists and ECPs say this does not happen from Lyme. >>

There certainly are documented studies that show that Lyme can involve heart

irregularities. I would think that it could be possible considering the lack

of adequate treatment your daughter had for quite some time.

I have just moved and can't find anything, but I am sure someone on the list

can point you to websites that do list the symptoms of Lyme-related cardio

problems.

[Guest guest]

carleen, i have had lyme now for 11 years......yes i suffer from eratic heart

beat though not to your daughters extent........check out the lyme alliance

site i believe there is info on cardiac lyme there....

www.lymealliance.org

Reid

[Guest guest]

Carlene, I will pray for your daughter. You defiantly need to get her into a

knowledgeable doctor who can help her. Dr in Ridgefield CT holds

lyme patients with heart problems close to his heart for his dad had a lot of

cardiac damage due to lyme from what I am told. Give him a call he is worth

the trip. Good luck and feel free to ask any of us in this group

questions....we all work together here to help one another, without this

group I would be absolutely crazy. As for a fast heart rate, that often

times goes with lyme I have developed PVCs since lyme, other major

complications seem to go with it also. Good luck and let us know how things

are going with her.

Hug

Amy from Maine

[Guest guest]

Amy..... and the group....u are right with out this group i WOULD be crazier

than i am....this is such a wonderful and caring ,knowledgeable group.....god

bless u all....

Reid