Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
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.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I would call your doctor. My sons had PICC lines and it didn't happen to them.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you for the update Katie. I will keep your family in my prayers. God bless:)
Posts: 5237 | From here | Registered: Nov 2007
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
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.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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posted
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....
Posts: 96 | From Ft. Worth, TX | Registered: May 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
wow, katie! couldn't get on board earlier today to read so i'm behind.
poor roy and you katie,
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!
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What a horribly frightening experience!
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, 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. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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
Posts: 3975 | From usa | Registered: Aug 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
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.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
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. Posts: 422 | From TX | Registered: Oct 2008
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bettyg
Unregistered
posted
katie, hoping the 3 links i gave you will be able to help you both know more what you are dealing with.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sending prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
posted
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
Posts: 503 | From Maryland | Registered: Oct 2007
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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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 Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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.
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.
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!
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am sending my prayers to you both. I hope they find all the answers very soon.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
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.
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
Sorry that your family is having such a difficult time...my thoughts and prayers are with you.
JT
Posts: 72 | From Massachusetts | Registered: Feb 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
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 Posts: 1185 | From New York | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!!!!
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.
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.
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