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» LymeNet Flash » Questions and Discussion » Medical Questions » Husband in the ER being Admitted for Infective Endocarditis (Page 1)

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Author Topic: Husband in the ER being Admitted for Infective Endocarditis
kreynolds
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Hey,

I was curious if anyone had this problem.

My PICC was pulled 8 days ago and every now and then I get a sharp stabbing pain where the PICC was near my heart.

It doesn't happen all the time, some days it doesn't happen at all.

My PICC was removed because I was running close to 103 degree fevers and they thought it was infected.

I called the lab to see if the culture came back with anything and they said it was all negative.

Today was bad. I was posting signs for a garage sale and it happened, wham!

It only lasted a few seconds, but man it killed.

It seems if I do anything stressful or overexerting myself it happens.

It was in for 8 months... so I don't know if it's still healing???

Any Clue???

Thanks


UPDATED info below

[ 04-04-2009, 09:57 PM: Message edited by: Kreynolds ]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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Abxnomore
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I don't ever remember experiencing anything like that when mine were pulled. Something does not sound quite right especially since you have had it out a while now.

I'd would get your heart checked out to be sure everything is fine.

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tosho
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I don't have much knowledge about PICC lines but maybe you should check for a clot ? Take care.

--------------------
[Bb WB igm+] [B.henselae PCR+] [Chlamydia pneum.igm+igg+] [EBV igm-igg+]

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pab
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I would call your doctor. My sons had PICC lines and it didn't happen to them.

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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tosho
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p.s. sometimes (but rather rarely) blood culture may be false negative.

I would contact your doctor as soon as possible.

--------------------
[Bb WB igm+] [B.henselae PCR+] [Chlamydia pneum.igm+igg+] [EBV igm-igg+]

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kreynolds
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To All:

I wanted to update the post my husband made this morning...

My husband is in the ER and they are doing a full cardiac work-up on him...

Unfortunatly, I had to leave to come home for my son.

I will update more later!

Thanks for all the replys,
Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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sammy
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Thank you for the update Katie. I will keep your family in my prayers. God bless:)
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kreynolds
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To All:

I heard from my husband...


The cardiologist said he thinks my husband may

have a clot in his lung, so they are going to be

sending him for a cat scan.


Also his white blood cell count is low... What

does this mean?

-Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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dmc
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Oh, the poor guy. Hope they are able to help him. Don't know what low WBC count may mean.

Best wishes to him & you.

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kreynolds
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sammy & dmc:

Thank you so much for the kind words.

-Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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darla135
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Please keep us posted when possible! I had similar, but less intense pain, after having my picc removed in January. It lessened over time and went away when I had a port inserted and restarted Rocephin. We never really knew the reason for it - scary....
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kreynolds
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To All:


I just got home from the hospital & got updated

info about my husband...


The ER ran a whole bunch of labs and one of the

tests called a D-Dimer blood test ,which can be

a sign of a blood clot, came back extremly

elivated. They did a Cat Scan and werent able to

see a Blood Clot.


He will be getting an Ultrasound on the arm that

the Picc Line in to rule out a blood clot.


The Cardiologist said she feels my husband has

an infected valve in his heart due to his Picc

line being infected. He is scheduled to have

Echocardiogram tomorrow morning.


It is called Infective Endocarditis...


He is being admitted to a section of the

hospital where they monitor patients closley

with heart problems.


He will be getting IV Daptomycin for the

Infective Endocarditis


As soon as I hear more I will update!


Thank you everyone for your support!


-Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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Dekrator48
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I will be praying for him to recover quickly.....sooo scary.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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TerryK
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So sorry to hear this! I'm very glad they figured it out.

Really appreciate that you've kept us up on his condition.

My prayers and love to you all.

Terry

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kreynolds
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Dekrator48 & TerryK:

Thank you so very much for your kind words and support!

We truly appreciate it!

-Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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bettyg
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wow, katie! couldn't get on board earlier today to read so i'm behind.

poor roy and you katie, [kiss] [group hug] [kiss]

glad you took him there to be evaluated; that they KEPT him doing testings.

i've never heard of this one before. ultrasound on his arm will be easier than the one they tried to do on me starting from GROIN area down the hip to foot!

i just could not tolerate their intense pushing down on ultrasound to find where the blood clot was located.

katie,
i went to NIH's medical library and found these 3 links for you; didn't read any of them, but want to share with you both!


may God watch over Roy and you, Katie, dissolving this blood clot without jeopardising Roy's health! [group hug] [kiss]


http://www.nlm.nih.gov/medlineplus/endocarditis.html

http://www.americanheart.org/presenter.jhtml?identifier=4436

http://www.texasheartinstitute.org/HIC/Topics/Cond/endocard.cfm

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Snailhead
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I hope and am praying your husband will be fine. God bless you both.
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DakotasMom01
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Sending prayers for Roy, your son & you.

Please update us when you can.

--------------------
Take Care,
DakotasMom01

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kreynolds
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Bettyg, Snailhead & Dakotasmom01:


Thank you all very much for your kind words and

keeping us in your prayers!


Bettyg: thank you for the links!I appreciate it! :-)

-Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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AliG
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What a horribly frightening experience! [Frown] [group hug]

I'm sending up prayers for both you & your husband.

I'm so sorry that you're going through this. Hopefully they'll get him straightened out & get rid of that infection quickly.

hugs & prayers,
[group hug]
Ali

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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seibertneurolyme
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Curious as to which antibiotic he was getting through the PICC line before this all started?

Pretty sure lyme and bartonella can cause endocarditis. It may not be from a PICC line infection but from a tickborne disease instead.

Bea Seibert

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feelfit
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Katie and Roy,

Sending you positive thoughts and hoping that Roy has a very quick recovery. Hugs to the little guy too.

Please keep us posted.

Feelfit

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Abxnomore
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He posted that he was on IV Clinda with orals & mepron and just recently switched to IV doxy with orals & mepron.

When they pulled his infected picc line he posted that there was some kind of small round ball of puss attached to it end of the line, some type of infection growing. I wonder if it could have even been a fungal ball.

Katie and Roy sending you lots of good wishes your way.

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viva
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Katie,

Sending all best wishes to you and your husband. Sounds like they have a good treatment plan in place.

You're in my thoughts.

Viva

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MY3BOYS
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may you be keep in the hands of God guided doctors to treat you hubby. is VERY good to have him on cardio floor for 24/7 monitoring. and d-timer elevation does help docs know witch way to go. echocardiogram with give more info.

only other test done for lung clot can be a V-Q scan. CT or V-Q can have their own sensitivites. sometimes both are done.

some of the TBD can cause inflammation to vessesls and heart is no exception, this can lead to endocardidtis, and aother cardiac issues

(and yet, i have prorastinated) sounds like if pus ball was at end of picc, that was significant. tip is to be cut and sent for culture and ID by nurse who pulled line.

praying for your family

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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bettyg
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katie, hoping the 3 links i gave you will be able to help you both know more what you are dealing with.

hugs/kisses to you both ....

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Ocean
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Katie,

I am so sorry! Please tell Roy (I am sorry if that isn't his name, I was thinking it was though) that he is in my thought and prayers.

Thank you SO much for letting us know and update when you can.

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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imagine2
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Katie, please tell Roy we are sending healing prayers and are standing by to cheer him home soon.

I hope his LLMD is keeping in constant touch with you.

God Bless.

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kreynolds
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To All:

Sorry I havent been able to update about my

husband sooner,but I just got home from dealing

with the idiot Infectious Disease Doctor at the

hospital hospital...

So, here is what happened through out the day:


The ultrasound tech did the ultrasound of his

chest, arms & legs to see if there was a blood

clot.

As far as what the nurse said about the results,

she didnt see any clots. But we have to wait for

my husband to be seen by the cardiologist to

know for sure.

My husband is scheduled to get an Echocardiogram

tomorrow so hopefully that will answer the "un-

answerable" question of the past 8 days... Why

is my husband who is 23, having shooting sharp

pains in his heart?

After I left the hospital at 6pm, I recieved a

phone call from my husband telling me that the

cardiologist isnt writing the orders & tests for

him...

It is an Infectious Disease Doctor...Needless to

say, she was not agreeing with my husbands Lyme

treatment and starting causing problems...

Basically, I had to rush to the hospital and

have a talk with a doctor who is very "main-

stream" as she called herself and brough up the

treatment guidelines of the CDC & IDSA... So, I

proceeded to tell her that I understand that she

was not comfortable with how my husbands doctor

is treating him for Lyme, but that was not her

issue to address because she is not his Lyme

Doctor [tsk] & that isnt what he is there for!

So, to make a long and pointless conversation

between myself and this ID Doc, we came to an

understand, i think, that she is intitled just

as we are to ours. Really, shes on the one side

of the fence and we are on the other as far as

my husband's treatment for Lyme is concerned.


BUT... I did make sure that the cardiologist was

going to be the one reviewing the results of the

Echocardiogram and that she was not!!!!!!!!

My husbands chest pains have been getting worse

since he got to the ER because of all the BS the

doctors & nurses are putting him through,

especially all the questioning about Lyme & his

treatment...

He keeps saying..." What does it matter what my

treatment for Lyme was... I'm here for my heart"!


I left there about 8:45pm and no sooner

after I left, my husband called me telling me

that the doctor put the info & dose of his

Mepron into the computer only put it in for once

a day, when he takes it twice a day.

So, I called the nurses and I said its on the

*******(bad word) bottle, twice a day! But, when

my husband was admitted, they took the bottle

from him. I can figure stupid people out for the

life of me... [bonk] ERRRRR! From the time my

husband told me this over the phone to when i

called, it might have been 1 minute... And the

nurse was like "Oh, you beat me to it, i was

just getting off the phone with the doctor & she

said he does take it twice a day"...


Well, Sorry for such a long post but I wanted to

keep everyone updated on my husband...

I told him that you all are keeping him in your

prayers... He told me to tell eveyone thank you!


Thank You All So Much! [Big Grin]

-Katie & Roy

[ 04-05-2009, 11:09 PM: Message edited by: Kreynolds ]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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bettyg
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katie and roy,

sorry, but what a $hitty day you both had fighting the idsa drs!! glad you spoke up and got it straightened out.

you agree to disagree about his lyme treatment but roy is there for his HEART and you'll listen only to cariologist on his findings of ECG!!

no wonder roy is NOT improving with all the unnecessary STRESS they are putting him/you thru.

thanks for taking the time to bring us up to date, AND VENT ANYTIME! we're here for that too and sending you unlimited [group hug] [kiss] [Smile]

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Keebler
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-

If the do the echocardiogram on Monday, see if the doctor would order it not just with him lying down but also standing.

Some patients with ongoing fatigue have found the standing images to show things that the lying down images do not.


-

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Geneal
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Sending prayers.

Hugs,

Geneal

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Pinelady
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If worse comes to the worst. Make sure they have a pacemaker available and ready for him. It could save him.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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kreynolds
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To All:

I just heard from my husband...

They did the Echocardiogram early this morning

and he is waiting for the cardiologist to come

and see him.

Also, his blood pressure is high. he said it was

160... What is a normal blood pressure? is it

120/80? Well, i know he didnt know what the

other number was but instead of being 120 he was

160... I hope I am explaining this right.

So we have to wait and see what the ECG results say...

*** When i made the post last night it was very

late and i forgot something about the Infectious

Disease Doctor...

After she and I had our disagreeance on

treatment for Lyme, I asked her to please call

my husband treating doctor... She said she

wouldnt because she didnt believe in how my

husbands Doctor is treating him.

Sorry for forgeting to put it in the post last

night.

Thank you to all again,
Katie & Roy

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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mtree
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thinking of you both!!!!!

[group hug] mtree

--------------------
worrying about tomorrow takes its strength away from today

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pab
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Katie & Roy,

I hope they have an answer for Roy today. Thanks for the updates. I'll keep your family in my prayers.

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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FuzzySlippers
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Katie, I just want to say that I think you are doing a truly wonderful job dealing with those doctors at the hospital.

I'm so glad you're standing your ground.

I think sometimes doctors, particularly in a hospital setting, forget that there is still consumer choice in the medical field. We are entitled to consult with and purchase the services of any doctor we choose and it's not for any doctor to individually say that we do not have that choice.

Keep up the great work. I'm thinking of you and Kreynold. Please keep up posted, k?

Fuzzy

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kreynolds
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Thank you to everyone for keeping my husband in

your prayers & thoughts. It is truly amazing the

support you all are giving and we can not say

thank you enough!

Update:

My husband is going to be getting a stress test

too. I'm not to sure when, but I know that he

will be getting one soon...

Also, the cardiologist is going to be reviewing

my husband's ECG results after 4pm. I hope to be

able to be there to speak with the cardiologist

when he is seeing my husband, but with my son

only a week into his treatment for Lyme & Bart I

have to make sure he gets his afternoon doses

before I leave.


Thank You all so much again,

Katie & Roy

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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njlymemom
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Oh Katie! How did I miss this post?!?

So sorry to hear what Roy is going through.

I just kept praying as I was reading the post.

You are doing a great job standing up for your husband.

I will try to call you later. Sent you a pm.

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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Keebler
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-

Katie,

Yes, you are doing an excellent job.


About the stress test. Some kinds will inject a medicine first. If so, first call his LLMD and ask if that is okay.


He'd want to avoid steroids of any kind. Also avoid EPI - epinephrine. It's in many numbing agents and other things, too.

I'm not sure his LLMD would WANT him doing an aerobic stress test now if the lyme is an issue.


=====

From:

http://www.ott.zynet.co.uk/polio/lincolnshire/library/uk/post-me.html

or http://tinyurl.com/33rxy8


Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3]


(See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle - excerpt: ``when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.


In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts.

We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. (CFS).''


----

[poster's interjection: Lyme disease, also, has cautions about aerobic exercise until nearly well. Lyme patients also have various other infections, some of which are viral and chronic Coxsackie virus is sometimes connected with patients who have chronic fatigue.

-

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astriapage
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Hello Katie

I have had infective endocarditis which resulted in me having open heart surgery.

No antibiotic could get rid of the infection in the valve.

A TEE was what was most effective at diagnosing me, but that was after they had done the echo and saw my mitral valve flopping around.

I was running a fever of 105-and they tried for 3 days to get it to come down.

The final combination of drugs to get the fever down was Levaquin, Vancomycin and Caspofungin.

These were all monitored by an ID doctor, but they don't know exactly what drug helped the most-they tried so many.

I was on 6 weeks of IV abx before my surgery, to rid my heart of infection, but did not work.

7 hours a day for nothing, and the whole time I knew I would have to have the surgery anyway.

My heart breaks for you, I have been there. I gasped when I saw the title of your post!

PLEASE TRY TO GET CARDIO TO DO A TEE TO BETTER DIAGNOSE WHAT IS IN VALVE! PLEASE!

You are both in my prayers!

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sutherngrl
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I am sending my prayers to you both. I hope they find all the answers very soon.
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bettyg
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katie, thanks for the update.

that turkey refusing to call roy's treating dr!!

160 over .... ANXIETY of not knowing how it will go and stress will rise the number many times. it does for me.

you are a REMARKABLE ACTIVIST for roy; best wishes on your son as well. when it rains, it pours.
[group hug] [kiss]

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zombie_mummy
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I don't know what to say. You are in my thoughts.

--------------------
"Be it, don't dream it." -Dr. Frank-N-Furter

http://www.lymefriends.com/profile/zombie_mummy

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kreynolds
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To All:

Update on my husband:

The results of his echocardiogram are still

pending so hopefully they should be finished by

8/9am tomorrow. Also the blood cultures are

still pending as well.

I know i mentioned that my husband has an

elivated D-Dimer test result and today I was

finally able to find out just how elivated.

The range needs to be less than 230. My husbands

D-Dimer level was 1826 on Saturday when he was

admited. Since starting the Daptomycin for the

Endocarditis, his D-Dimer has dropped to 1034.


Also, my being my husband is being monitored,

they are able to see his heart rate and to make

sure everything is ok. The nurse came in this

after noon telling that he had an "elivated ST

segment". She explained that it starts at "P"

and ends at "T" like alphabetically. I hope i am

making sence. Sorry if I'm not, that was how it

was explained to us.

So we are still waiting to get to the bottom of

this...

Astriapage: I was able to get info on the TEE

test and my husband is going to ask the doctor

for one! Thanks for the info!


To Everyone: Thank you so much for everything. I

printed out the entire post so my husband could

see what you are were saying. He wanted me to

thank you all for him as well.


Hugs to all:
Katie & Roy


My husband had a stress test... We thought he would have been infused and run the test that way, but they decided that they wanted my husband to run on a tredmill for 12 minutes. Well, needless to say he is feeling pretty bad after that. The results of the stress test were negative.

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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opus2828
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I am praying that everything turns out okay.
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feelfit
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Well at least a plus with the Stress Test!

Thinking of you guys and praying for the best outcome.

Feelfit

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bettyg
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katie, thanks for update. continuing to pray for you all. [group hug] [kiss]

anyone, what a D-dimer?? wow, what high numbers that is.

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kreynolds
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Bettyg:


The causes of a high D-Dimer level blood test

can be infection,blood clot,recent

surgery,inflammation, age, cancer, pregnancy,

etc. The causes are very broad, but depending on

your symptoms or any preexisting

condition/illness, the doctor should conclude

why the level is high.


So in my husbands case his picc was infected, he

was running fevers & since being on Daptomycin (

treatment for the infection), his D-Dimer level

is gradually making its way down to where is

needs to be... We are thinking his D-Dimer level

is high do to the Endocarditis or the infection

in his heart.

Thank you for keeping us in your prayers!

-Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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jtavares76
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Sorry that your family is having such a difficult time...my thoughts and prayers are with you.

JT

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kreynolds
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To All,

UPDATE: This is Roy and I am back from the hospital.

Not much was said to me about my condition.

They told me I had a weak heart due to the Metril Valve not working properly.

Instead of it sealing shut its flopping around.

I know many of you posted about my condition and I want to thank you for all your prayers and thoughts....

I am truly concerned about my heart being that a port is supposed to be put in sometime soon.

They did not tell me much and focused more on my Lyme than the initial problem I was there for.

I HATE STANDARD MEDICAL PROFESSIONALS!!!

I am feeling really tired and weak, but wanted to update and tell you all THANKS!!!

I will be on here soon!

-Roy

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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Tincup
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And in comes Pokey.. looking for Gumby.

Duh me!

I don't know how I missed this post totally!!! I was gone a for a couple of days.. but normally I am more up on it when I return.

SO SORRY you had to stay in the duck motel!

OUCH OUCH OUCH on that!

Ok.. I can't pretend to know how to help you.. but from what I am seeing here.. I would suggest to MY family (if this were him) to start taking L-Glutamine- powder- pharmacutical grade ONLY with no additives.

I'd tell MY family to mix the scoopful (read directions) in water real well... (no smell and no taste) and drink it up ... don't let it sit around then sip on it. NOT good.

This might help with the valve repair... as well as muscles and bladder and other things too. Six weeks minimum... taken daily.

BUT.. I am NOT a doctor.. and this is only what I would do.

You were good there... and thank you for standing your ground. As sick as you must have felt... you did exceptionally well.

Get some home made REST and get back to us when you can.

Thank goodness you are ok!!!!

[Big Grin]


Is your dear wife.. who was SO great posting updates... please thank her for us.... well is she doing the plucking now?

Or is she making you wait?

I know with all she has to do... having to pluck you isn't going to be easy or fun.

I've yet to hear of a spouse who had the desire to sit on the side of a bed and painstakingly pull out the duck feathers from between the patient's teeth when they've come home.

And never have they jumped for joy having to vacuum up the free floating little feathers that are flying all over the room!

But she sounds like a good one.. so you'll just have to start spitting out those duck tail feathers while she is doing this other stuff.

[lol]

I am really so sorry you were there and hurting so much. Probably scared to death too!

But your feather plucker did give the duck motel's staff a tough time... and for your benefit.

You are a lucky one. But we already knew that!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TerryK
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So glad to hear that you are home. I'd get copies of all my medical records from there and any tests that were done as well so that you can give the test results to your LLMD.

Disgraceful behavior on the part of the ID. To refuse to talk to your doctor because she doesn't agree with your treatment is not professional. Some doctors have such a big ego that they simply are not capable of putting the patients well being first.

So sorry you and your wife had to experience such distasteful behavior. Your wife was so kind to keep us updated! She is a real sweetheart and such a trooper.

My thoughts and prayers are with you for a quick recovery.

Take care,
Terry

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Abxnomore
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Glad to hear you are home and away from the hospital know nothing DUCKS!
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kreynolds
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To All:

UPDATE:

This is Katie, Roys wife, Roy wasnt feeling any

better when he got home and was not satisfied

with what the doctors said at out local

hospital, so we called his Lyme doctor and were

told to talk him to a different hospital when he

can see Roy. It is about 30/40 minutes away from

home so I am truly missing my husband and I know

our son is too!

Its 1:04am and I just got home. He was still in

the ER when I left, but he just told me that he

is being admitted.


I am glad to know he is with a good hospital and

in the care of his doctor so hopefully we will

have an idea on what is causing this for my

husband and how to fix it!


*** We just miss him. Since he has been

diagnosed, 2 years ago, I can say that we havent

spent more than a day apart. [Frown]


Thank you so much for all the support & keeping

us in your prayers, we truly appreciate it.

I will update more as soon as I get more info.

Hugs,
Katie

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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bettyg
Unregistered


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wow katie! [group hug] [kiss]

leaving one hospital and taking him to ANOTHER in same evening!! whew...

nice seeing roy post himself, and so GLAD YOU CALLED HIS LLMD for his guidance and advise.

MORE PRAYERS headed to each of you..

mitral valve is nothing to ignore.

my late dad had 2 mitral valve replacements with PIG valve. 1st lasted 10 years and 2nd 3-4 yrs. until his death.

he had also UNDIAGNOSED LYME FOR 80 YEARS.

so whatever happens, with roy being so young; he has a much better chance of overcoming these obstacles than my late dad did. [group hug] [kiss]

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Tincup
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Well bless your heart.

Thank you for updating us. I am sorry you are doing so much running... but just so you know....

Hubby praises you as if the sun rises and sets with you and like you walk on water.. and worries about you so... and your little one too. And we can surely see why. You are tops.

If you ever decide to dump him....

And when he reads this he is LAUGHING.... I can't hear you laughing.... LOUDER NOW!!!!

You can stay here and be nice to me!!!!

[Big Grin]

If we can do anything for you... please let us know. Heck we feel like we already know you and we hold you dear too.

You are part of this big crazy family... so do share and do let us know if you need anything.

OK?

Hope you get some rest... and when you are up to it.. we'd love to hear from you!!!

Hugs to you all... Dad, Mom and baby too!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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astriapage
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Like Betty said do not mess around with the Mitral Valve!

My cardio has admitted that Lyme did the damage to mine!

I am glad you went to another hospital-please keep us posted!

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seibertneurolyme
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Katie,

Glad you went to the 2nd hospital -- I was going to suggest you get a 2nd opinion from a LLMD cardiologist.

One supplement you might want to think about adding is CoQ10 -- it helps strengthen the heart and is good for the brain as well. Kind of expensive, but worth it. The ubiquinol form is best. 300 or 400 mg daily is probably an adequate dose although it may need to be even higher in Roy's case. Many alternative docs prescribe this for congestive heart failure and other less serious heart issues.

Hubby has had a mitral valve prolapse probably from birth (diagnosed at age 3 or 4). He is now 55 and has had Lyme and coinfections for 8 years. Has been taking the CoQ10 for over 7 years and his last echo actually showed some minor improvement in heart function -- his regurgitation was less than in the past. The only explanation for this is the CoQ10.

Best wishes.

Bea Seibert

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Ocean
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Katie,

I'm glad that Roy and you are fighting for him. I know a mom who took her kid to the ER with 104 degree temp after he'd had a hernia repair surgery. They gave him some Tylenol and sent him home.

She knew something was really wrong. In the am, she went to her pedi's office and waited until they opened, pedi took one look at him and called for an Ambulance to take him to a hospital in a large city 1.5 hours away.

He ended up having Toxic Shock Syndrome. He almost died (they think a gauze pad was left in him during the surgery) and would have if mom didn't have intuition.

You are a WONDERFUL wife for Roy and I can tell you guys love each other so much and have so much love for your little boy.

Thank you for updating us, I am sure you are so exhausted. I hope you have someone nearby to help take care of your son so you can rest too.

Some hospitals are incompetent as Astriapage can attest! I hope this one can do more for him than the other. It's great that his LLMD will be there to make sure he gets the care that he needs =)

take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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njlymemom
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Katie and Roy.. thanks for keeping us posted.

Smart move going to the other hospital.

I know the hospital he was in, I have had a few horrible experiences there.

Now his lyme txing doc will be there for him.

Let me know how I can help.

Hugs & Prayers for all 3 of you being sent.

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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pab
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Katie & Roy,

I hope you finally get an answer. Hang in there!

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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kreynolds
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To All,

This is Roy,

I am not feeling good for the past 7days.

Like my wife had mentioned I went to another hospital for my heart problem.

I got there real late and the problems started....

I was held in the ER with extreme chest pains, shortness of breath, left side going numb,coughing,headaches,dizziness and nausea.

I was held in the ER for 9 hours. I was first told that I was going to be admitted, they just needed a room (they were busy).

I thought I was finally going to get some help with my Mitral Valve.

To make a long story short one of my Lyme Doc's partners saw me. My Lyme doc was on vacation due to "Ash Wedneseday".

His partner asked me how I was feeling. This was at 7:30am , after having no sleep.

I told him I am really not feeling well I was held in the ER for 9 hours without a room where I could sleep and that my heart is really hurting.

He told me my blood work looked fine and he was discharging me. I couldn't believe it. The best part was that he had called my Lyme Doc and asked him what to do.....

Nobody wanted to deal with me. I feel really sick and its getting worse.

I bet if I was 20 years older they would have been more concerned.

I just don't know what to do.... My Mitral Valve is in bad shape and my bloodwork for an infection was highly elevated.

BUT both hospitals discharged me saying it was the Lyme.

I told them I know Lyme can cause heart problems and thats why I'm concerned. It already has affected my brain and now my heart is extremely weak at the age of 23.

Well I am off to the toilet bowl to toss my cookies.......

Astriapage... seems like my problem is similar to yours.

It seems like anything I read about it ISN'T good.

http://health.yahoo.com/heart-overview/mitral-valve-regurgitation/healthwise--aa143442.html

I asked for the TEE test and they gave me the cold shoulder.......

Such is life..... [toilet]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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bettyg
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roy, those A holes !! reminds me of the tshirt i received the other day or maybe it was posted on this board; can't remember.

it had a man bent over completely with his head up his butt.

it spelled out IDSA,,, can't remember the punch line of the tshirt!!

can't believe the rum dum co-worker of your LLMD??
no brains whatsoever. [toilet] [cussing] [puke] [tsk]

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seibertneurolyme
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Roy,

So sorry you are getting the run around. Hubby suggested that a chest CT with contrast nmight be useful. It could find a clot if there is one -- more definitive than an ultrasound or even an echo or stress test. This can be done on an out patient basis. I would call your LLMD or PCP tonight or first thing in the morning. Don't give up on getting a more definitive diagnosis.

Make sure you get copies of all the bloodwork done in both hospitals.

Are you taking any enzymes such as Wobenzyme or Vitalzym or nattokinase or lumbrokinase or something like that?

Bea Seibert

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kreynolds
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hey,

Just curious.... Did anyone have any discomfort in the chest area with MVR?

I strongly feel that I have infected endocarditis.

I also feel that 2 years ago when my doc found the heart murmur and palpatations is when my heart started getting weak.

I did notice that the ER and staff were more concerned about the elderly, which I can understand, but it took away from my treatment.

I am going to have a long talk with my doc, maybe not see him anymore, thats how ****ed I am.

Very, very concerned. Seems like they thrive on just lab work. I also heard that you can have a false-negative lab for Endocarditis.....

Next step....Unknown [confused]

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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Tincup
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Hang in there till you talk to your doctor!

Tell the office you've spent X number of days in the hospital.. two hospitals.. and still have no answers and are very concerned... and you want to talk to him/her today!

Be nice and get your records too.

Hugs to you and yours. Don't give up yet.

Better days ahead.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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roy, [group hug] [kiss]

hope you can pinpoint everyone down; sorry but bedtime for me.... [sleepy]

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astriapage
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I have sent you a PM giving you my phone number.

I really want to talk to you-please call, I can even call you back. Or Katie can call-just call.

I did have discomfort, pain in my chest. What is scary is I still have pain, and wonder if it is possible for the heart to become reinfected.

I will be waiting for you call!

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TO LIFE
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Dear Astriapage,

In my opinion the answer is yes. I have the infection in my heart as well. I am going to start a poll on are Echo results.

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Dear Roy,

What antibiotics are you on?

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kreynolds
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TO LIFE:

Zithro,Levaquin, and Tindamax

--------------------
Diagnosed CDC + 6/2007

Quest: + IGG Bands 18,23,39,41,58,66 and 93.

Quest: + IGM Bands
23,39

Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease

+ Biofilm blood test 12/2010

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Hi Kreynolds,

Is your Lyme MD willing to right a note to Cardio about heart infection? Like, all they have to write possiable heart infection for Cardio. for you.

Then the Cardio will have to dot his i's and cross his t's. Like even though my heart infection was due to Bart. and Lyme mainstream medicine DX me with Staph.

Do you have the echo results? Or prior ones has well so they can compare?

Do you have a teaching hospital near you?

If you do have an infection in the heart you need the A bomb of antibiotics. Rocephin will just get into their a little.

Get that note.

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astriapage
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Hello Everyone-I want to update everyone on what I know about this.

I see Katie has not posted yet-but I have been speaking to them today over the phone and they are going to admit Roy to the hospital again.

I contacted my cardiologist today, and he contacted them and said he would admit him to the hospital in NC on Monday and treat the heart infection.

She heard from his doctor around 6 pm, and they decided to put him in the hospital there.

She told me she brought up how a completely strange doctor would treat her husband, etc. and that got something done!

I do not want to speak for someone else, but I know alot of people have been so concerned for him, and want to let everyone know what I know.

Hopefully Katie will come on soon and give us the latest update!

Please pray everyone for Roy!

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Hi Astria,

I was wondering if you had Diastolic Dysfunction of the left Verticle?

This heart stuff just sucks, we only have one right. [Smile]

Thanks

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