No, no one checked for a clotting disorder to my knowledge. 1/2 hour after having the Lovenox injection my long overdue period began. I'm having very heavy bleeding and the pain is so bad I feel like I'm in labor.

I have my suspicions as to how I got the blood clot. On Saturday, a new home healthcare nurse tried to push my line in further than it should have gone. It was secure and functional for a month, but the nurse that initially put the line in had to leave 1/2 to 1 inch hanging out. I had a stat lock and the extra line was taped down securely for the duration (no problems for a month).

The nurse that typically sees me said it was fine . . . let's not mess with perfection, it's working fine. Anyway, the new nurse (not very experienced, in my opinion) grabbed the line and tried to force it in further. Instantly, it hurt all the way up my arm to the area where I now have the clot. Kind of like a 'zing' or nerve pain. The clot is behind/above my right collar bone.

My arm and collarbone area were painful shortly thereafter and then it began swelling and changing color. By Monday evening, the entire PICC line had snaked its way out. The nurse from the infusion co. (bless her heart) came out yesterday and inserted a new line. Afterward, she took a good look at my other arm and told me to go to the ER ASAP. She was afraid I might have a blood clot. She was correct.

My own discharge instructions from the hospital state the following about blood clots: "Sometimes the lining of a vein may be injured and a blood clot may form." Of course, the ducks at the hospital are blaming it all on just having the PICC line, not on their nurse. This particular nurse is banned from coming to my house and it sounds like she's going to job shadow for a while . . . hopefully for a long, long time.

I was not treated very nicely at the duck motel, either. They gave me all of my meds except for rocephin. So, they basically refused to treat neuroborreliosis. Lots of raised eyebrows about me having been treated for lyme for a year.

In addition, the admitting duck (pulmonologist) said I have to have daily blood draws to check my PT and IMR. He knows full well I have to drive 2 hours one way to get to my PCP. My husband called his office this evening to see if he couldn't draw the blood at his own office. He said he would do it one single time. Advised we find a more local PCP. Kurt told him we've been unable to find anyone to tend to our lyme disease. The duck just said, "yup." End of conversation. How pale is that?

The admitting nurse was downright rude. After some small talk, she admitted to having had lyme 10 yrs. ago. She told me, "it is medically impossible for lyme to exist once you've had IV antibiotics. I politely disagreed and told her she was fortunate to have been diagnosed immediately following her rash.

She did not look well to me, she actually looked and acted quite unhealthy. Her angry demeanor was also a dead giveaway. I did ask her if she happened to suffer from fibromyalgia or chronic fatigue since she had been 'cured' of lyme. She paused . . . for a l-o-n-g time, gave me the hairy eyeball and finally admitted to having fibromyalgia. But she told me lyme disease was a "piece of cake" compared to having fibromyalgia. Some days she can't even squat down, but the staff compensates for her during her 'down' days. Hey, I tried to plant a seed and really wish her well despite her anger.

As if that weren't enough, I think my son is relapsing. He's having headaches, anxiety is through the roof, he's having seizure-like activity with wandering around the house at night, yet not knowing where he is and he's unable to speak intelligibly when it happens. He's twitching at night, having visual problems and says things in the room get close to him and then far away again. He's also experiencing bouts of explosive anger.

I feel so broken down and abused from all that's transpired over the past few days. My son's apparent relapse is of course, the most heartbreaking for me. I'll be calling his LLMD first thing in the morning.

Thank you for your prayers, we truly need God to continue watching over us.

Ask you LLMD abt the blood dran stuff, and if you can get a script for the home health nursing service to do blood draws.

IS your son currently being treated? If yes, maybe this is a herx not a relapse.

My son was deemed 'cured' by Dr. C on August 15th. He hasn't been taking antibiotics since then and it's been downhill for him since then. Most of his problems crop up at night and have reason to suspect bart. Will keep pounding at this as long as we have to.

Thanks for sending me the smile . . . I'm smiling now, too. Can you see my fangs?

We are just widgets on the medical assembly line.

So, even tho we definitely are trashed frequently at duck motels and by the average duck in private practice, if other kinds of patients were surveyed, I bet you would get a lot of horror stories.

Not saying all medical people are like this, but it hurts worse when you are sick and have to take abuse on top of it.

I would personally be inclined to bill my out of pocket to the home infusion company who employs the nurse who shoved your line back in.

To my mind, that's where your blood clot came from.

They x-ray those things, y'know, and a doctor approves the exact placement. So you don't just go shovin' on em. That's pretty unbelievable.

Now, I hope your LLMD will have your son whipped back into shape again pronto, he can't have gotten too far outta whack in that short a time.

Goodness. When it rains, it pours. Hope things are brighter soon.

Send those duck bills to the home infusion company with a polite but firm demand letter.

Michelle

For the idiot that told you it was "medically impossible" to still have Lyme after antibiotic treatment...

Print this and give it to her. It's an excellent collection of peer-reviewed material on the persistence of borrelia after long term treatment with antibiotics -- sometimes REPEATED treatment.

Let her know (politely of course) that as an admitting nurse, it's important she not be misinforming the public about something this important, not to mention that once she reads this, she might realize why she continues to have this mysterious "fibromyalgia."

Michelle

My kids have their blood drawn weekly by home health for their LLMD and will draw (with orders) from other doctors.

I'm sorry your son is having problems, but I agree that he can't have fallen too far....once he's back on meds, he'll be better.

Praying for you all!

about that nurse saying FM is worse than Lyme....HA! FM IS Lyme! been there, done that!

MY PAT ANSWER TO FIBROMYALGIA...YEAH I KNOW HOW TERRIBLE IT IS...I have all the symptoms of that too...in fact I was diagnosed with it at one point!

Then they said possible MS and then Lou Gerhig's.

Thank God God for the Lyme Diagnosis and treatment...I have improved SO much...most of fibro is GONE.

Usually shuts 'em up.

I can't believe they sent you home!!!
I get so upset when supposedly professionals treat us like dirt!

I think they're eges get in the way! They have to have the control as to what it is!

Yesterday, when I had my follow-up blood work, I asked her a question about lyme.
You know what she said? You keep asking me questions about this, and I don't know!

In one way I was glad she was honest, but I think because she is a p.c.p., she feels it's not her job to know about lyme!

Hope everything works out for you, and don't take anymore doo-doo from ducks!!
You, yourself are your own best advocate.

Plus, she's probably jealous because you know more than she does!

Hope you were able to work some things out today.

I will keep praying. I know with proper treatment your son will get better.

I want to bop the home health nurse on the head. She should never push in a picc line that has been sticking out for a very simple reason--it is not sterile! Not to mention the blood clot issue! Send your hospital bill to the home health agency.

Okay, anger aside. Hang in there. You know we are all praying for you and Chanse and your wonderful husband. I yakked with them for a few minutes at the dentist's office in St. Louis in June. I just want you to know your son is adorable. Hiker53

Hang in there, my thoughts are with you and your family.

Talked to my nurse from home health care (the good one) and she doesn't understand why they (whoever they are) won't let her do the blood draws for the PT and INR.

I think I found a way around it through another doctor. It really bugs me that the admitting doctor writes the order on my discharge papers, then won't follow-up on his own order. All he'd have had to do is call or fax the lab with the order. Oh, well.

Chanse had a funny rash on his stomach (measles-like), a fever, back pain and a headache just before he spiraled out of control. Makes me wonder if it was a new tick bite, or possibly a mosquito? I guess it doesn't really matter, we know what it is (thankfully) and Dr. C already prescribed antibiotics. I'll be picking them up today.

Chanse is as relieved as we are. We had a talk last night and I told him Dr. C prescribed Ceftin for him. He dramatically wiped his forehead with the back of his hand and said, "whew! I don't like the taste of ceftin, but I really hate feeling like this!"

Thanks again everyone, you're priceless!

Keep us posted!

My daughter had the same thing with things in the room going in and out (or getting bigger then smaller). I think it might have been related to her headaches, in retrospect. IN her case, both headache and strange experiences might have been caused by fluid retention.

Good luck with the blood clot- let us know when all is well. And good luck to your son, hopefully this treatment will restore his well-being.

Lyddie:

quote:

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My daughter had the same thing with things in the room going in and out (or getting bigger then smaller). I think it might have been related to her headaches, in retrospect. IN her case, both headache and strange experiences might have been caused by fluid retention.

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That's exactly how Chanse describes this phenomenon! At first he said he was hallucinating and asked me if he needed a psychiatrist! I told him he most certainly did not need a psychiatrist for this health problem. After much prompting, he described what he meant by hallucinating, the room going in and out, getting bigger and smaller. Anyway, the word psychiatrist, from an 8-year-old? We've never used that word at home, so it must have been from an episode he saw on Dexter's Laboratory!

By fluid retention, do you mean inflammation in or around the brain? I ask because I've noticed his glasses have been so tight they leave pitting or indentations along his temples when he takes them off. We'd noticed this happening prior to his lyme diagnosis.

Thanks again, both of you!

The anguish the complications this disease causes us and our families is so difficult for most people to understand.

I would suspect bart with your son also as I have anger issues with my son and bart.

I'm not so good today. Just want to sleep, sleep, sleep. Feeling really bummed out as I think of the treatment I received at the hospital. Stuff like this can make you feel hopeless on your best day. Bad enough to be this sick, then have them treat you as if your disease does not exist.