posted
I've been diagnosed with lyme in June 08 and
have every co-infection. I was treated
aggressively with iv and orals for 4 months and
seemed to be getting better.
Long story short everything came back (not as
bad, thank god) and I'm back on IV zithro and
Cleocin after 4 months of bicillin shots. I had
a pic line put in my right arm and I got a clot
below the pic 5 days later. They put another
pic in the right arm and 5days later a clot
again beneath the pic line. They put a
peripheral line in until I could see a
hematologist but that line only lasted 24
hours. More clotting My iron levels are crazy-
UIBC 405, Iron serum 24 , hemoglo low, and my
iron saturation levels are a 6 ( normal range is
15-55) I have babs, bart, and lyme. When one
gets under control something else comes out.
I've been through hell and back- Does anyone
else have clotting problems? I didn't have
these problems with the first pic- They want to
try a port next but I can't do anything until I
get this fixed. My llmd said it could be the
babs inflaming the red blood cells
Posts: 298 | From usa | Registered: Aug 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Look into systemic enzyme therapy for this.
Also, Rechts Regulat.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Tracy9 has had some clotting problems with PICCs and peripheral lines. You could search for some of her past posts. It might be helpful for you to read through some of her experiences. (Tracy, I hope you don't mind me bringing up your name here...)
If I were you, I'd wait to get the port until the clotting problem is under control and well treated. Hopefully it won't take too long to get in with the hematologist.
Take care Posts: 5237 | From here | Registered: Nov 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I hate to say this but you can still have a clotting problem with a port also.
[ 02-16-2010, 07:49 PM: Message edited by: Haley ]
Posts: 2232 | From USA | Registered: Aug 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
haley means 'port'
Posts: 3975 | From usa | Registered: Aug 2007
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quote:Originally posted by Carol in PA: Look into systemic enzyme therapy for this.
Also, Rechts Regulat.
Carol [/QB]
Yes to what Carol said... and hopefully the hemo will be testing you for clotting disorders and hypercoagulation?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
No problem ever with bringing up my name; I'm shocked they keep giving you lines and no one has referred you to a hematologist because these clots can kill you.
I have been going through this for a year now. Every line I get results in a clot. This has led to so many CT scans and tests and angst for me; if you read my posts you will see it's been quite a ride.
It sounds completely unsafe for you to get a line. Most recently, I was hospitalized and had a heplock for 3 days, and now have a blood clot from inside my elbow to just below my shoulder from that.
Simultaneously, my second PICC was occluded and clotted. The ER doc pulled it out and held it up in front of my face, said "THIS COULD HAVE KILLED YOU" and told me I should NEVER have another line.
I have a blood clotting disorder and I would bet my bottom dollar you do, too. They can't always find out which one, there are so many....but you are clearly displaying that you have one.
You need to see a hematologist ASAP. I saw two different ones and neither one found mine. I remembered vaguely being told I had a clotting disorder at Yale after having recurrent miscarriages several years ago, and was able to get my records.
There it was, a very rare, genetic disorder, Protein S Subtype 3 clotting disorder. It is a very dangerous disorder, and now I am being told I need either screens put in both my arms or a Greenfield filter put in just above my heart.
I am now on IVIG, and need to see my docs and a vascular surgeon because I am terrified to not be able to get my IVIG. I have no idea how they are going to administer the IV, with both arms full of clots.
However since I am now on Lovenox shots twice a day plus 7.5 mg of Coumadin, I'm sure there will be a way.
The most important message here is you are playing with your life. I heard this over and over and ignored it, I was so desperate to get well. This last clot, the entire length of my upper arm, after just a 3 day heplock, coinciding for no apparent reason with multiple blood clots near my PICC line that were occluding it, sent a message I couldn't ignore.
The ER doctor's message was pretty loud and clear too. I am shocked they keep giving you lines. I had to fight and fight and go from doc to doc to get a second PICC after I got my first clot.
Please look for answers, you clearly have a clotting disorder. Best of luck to you.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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suddenly develop a clotting disorder?
Posts: 298 | From usa | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Lyme, you can have a clotting disorder through mid-life and not even know it.
I recently found out that I have Factor V Leiden mutation as well as Antithrombin III deficiency. Both put me at an increased risk for thromboembolism, especially in terms of clots in the legs.
I haven't had any clots yet (I'm 39) but it is thought that lyme hypercoagulates the blood too.
So in short our blood may be as thick as molasses. This makes clearing infection especially hard because pathogens may use our fibrin against us (as a shield from the immune system of sorts).
Definitely run a full thrombosis panel and make sure you are aware of any conditions you have.
Knowing is half the battle. I'm not on blood thinners yet. I'm just pounding vitamin E, Nattokinase, Lumbrokinase, etc.
Aspirin only helps arteries not so much in the venous system.
Best.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Also try to avoid vitamin K if you do have a clotting issue.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have struggled with that question, too, because I know I have to have had this my whole life, as it is genetic.
Yet I had surgeries in the past, and we can trace my Lyme back about 31 years, so I cannot explain why I never got clots when I had heplocks in before.
I guess my only explanation is that "all hell broke loose" when I was rebitten 5 1/2 years ago; and perhaps my Lyme load was not high enough to wreak havoc until I got rebitten, affecting the thickness of my blood.
Who knows; I cannot explain for the life of me these last two blood clots coming on at the exact same time in different arms, one from a heplock that was only in for three days. I'd just been in the hospital the week before and had a heplock for four days, and I'd had the PICC for four months, so why now?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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