Actually my ill daughter did something stupid.. Then I missed the severity of the situation..

Anyway she may have had a blood clot yesterday and I thought she was 1) dealing with allergies that had gone to her chest..She had had some sinus congestion, etc and 2)listening to her bitch about not wanting to go to a Dr yesterday made me think there was some drama involved...Looking back with what I know now, she was in respiratory distress..

She was coughing and was bent over and trying to get her breath...I got her some dimetapp Dm and off we went..

I feel like crap because it might have been a blood clot..and if it was I had some intervention from upstairs..

Going to the hospital now...Does this ever get better????

We all do stupid lyme induced thing over and over again. No matter how hard we try to prevent, it always hits. Glad your daughter has a observing and caring Mom.

Just had my PIC put is a few days ago. In one attempt, the line went out of the vein and back in, so there is always something.

With this disease, there are no surprises only events. After a while you get use to it, I had to keep some of my sanity.

I'm with you...post as soon as you get back from the hospital, okay?

You are doing an amazing job and really on top of things; thank you so much for the "heads-up" for PICC line users.

Please let us know what you find out and what to be on the look out for; if JC had been coughing, I would have just assumed he had a cold!

This stuff really makes us second-guess ourselves with all the things we have to factor in every day.

It's like we have to be hyper-vigilant to every little nuance in symptoms. And its especially hard when you're not the patient!

I always feel like I'm either "under" or "over" managing (or just stymied!)

You're the best and I continue to learn and benefit from your wisdom and kindness every day!

Here's hoping all goes well and it turns out to be one of those boring, routine, why-did-we-bother sitting here with a freezing fanny, uneventful trips.

love,
andie & JC

Hoping that all will be well.
Thanks for the heads-up.

Yes, usually it gets better.

I can only assume, they found nothing or they would surely have kept her and IV'd a blood thinner.

Do not know if they can tell if she passed one yesterday or not...but the more we go over what happened...I really think it probably happened.

The coughing was severe, almost croup like and she bent over and was gasping..She had been dealing with some allergy things so I just thought it had gone south..along with her attitude problems....

Today she tells me that she could not get her breath..It hurt too bad to breathe..She had about a 10 minute episode of coughing and then it was gone...I again assumed the Dimetapp DM was working..She also told me today that when it was happening she was wondering if that is what a heart attack feels like.

Then about 3 hours later she again had a brief coughing jag..

NO coughing since and no more meds to help with the allergies..If it were a cold or allgery like bronchitis starting, the cough would still be here..

I asked the nurse if it was a blood clot, when was it most dangerous..She said if we made it thru yesterday that we were lucky and we might be out of the woods..

I really know little more than I did before but be alert, especially to kids that can't or wont' communicate very well.

i had several PICC lines over the past 5-6 years with severalepisodes of PE in both lungs.

They are hard to diagnose!

My first happened in the hospital and I was discharged home with dx: Anxiety, as I couldn't breathe and I felt like hit by a truck, who broke my ribs.

It took 5 ER visits till ducs figured it out. Since then I have permanent damage in lower lobe of both lungs and it's hard to tell if there is a new on the top or if it is a pneumonia.

Insist on D-dimer test and several CT and VQ scans. Have several (insurance pays up to 4 opinions) readings done by indpendent pulmonary radiologists.

My last Picc line gave me infection of RBC, so far 4 month of different IV and oral abx didn;teven touched it. The herxes are killing me, but this is life thretening - I have to go twice a day to the ER for the IV as stupid Medicare doesn't cover Home health care. Each dose of this IV is $987.50!!!

The hospital doesn't ant to admit me past 3 first weeks. I'm turning crazy. I have no veins left (that's why I had PICC lines for such a long time - I'm sick for 10 years with minimal oral absorbtion).

Please, everyone with the PICC line, do your own dressing changes, only you can see and feel the difference.

Insist on second, third even forth opinion. I was a professional athlete living in the 8,500 ft above see level. This ruined another part of my life.

Be carefull, research a lot about it. Let your dauther/son be her/his own to decide when that thing has to go out. Take pictures of it if it seems different.Never cover the side with non-transparent dressing.

Flush it as frequently as you can. Divide daily dose into 2-3 doses. I'm tall, but don't need more than 3/4ml (cc) to ensure there s no blood clot on the end of the catherer.

When they take the catrerer out, have the doctor send it for blood cultures - it takes at least 5-7 days. First grows apears in 24-48 hours. PICC line infections are the worst to treat, as they use the strongest abx combos, which kill all bugs. The die-off is unbearable. I had to triple my pain meds and still don't feel too much of a relief.

Good posting, lyme mom tooo. Thanks for reminding othersabout the dangers.
Let me know if I can be of any help.

Punkie, I was feeling relieved but now I am worried..We only had a chest x-ray..

She no longer has symptoms..I am afraid the Dr will think I am the one with Bartonalla if I bother her again..

Punkie's post has a lot of information in it.
Can you show it to a doctor, or will that cause trouble? Lately, when I ask a doctor for a lab test or whatever, I 've taken to asking them to document that I asked and that they refused. This makes them so nervous, that they go ahead and order the test. This reflects a slightly adversarial atmosphere, but it works in the short term.

It isn't clear at all that after a certain time you can be sure your daughter is absolutely safe. I mean the amount of time isn't clear.

She now says we must be watchful of infection..

What did your daughter see the neuro-opthamologist for? I'm not familiar w/Restatis. Just curious- our daughters have had a lot of similar problems. I think there is a link between eye problems, psychosis, seizures and headache for my daughter.

I did see the post about babesiosis and blood sugars. It's weird that along with my middle daughter's type 1 diabetes, BOTH my other two kids (youngest girl, oldest boy) had ketotic hypoglycemia, a form of very low blood sugar in the morning, accompanied by very high ketones and persistent vomiting. And all three test positive for Lyme. Only my middle girlhas been tested for co-infections. She was negative, for what it's worth.

I'm glad the chiropractor was helpful. Funny, my daghter just started seeing a chiropractor /nutritionist for GI stuff. None of her other doctors seem able to help her right now, and GI stuff is preventing treatment w/abx.

The eye dr is great..He said right away, of yes, she has the normal lyme symptoms.

He also recommended we go to the eye trainer, which we did for a few times..They were also very good...

The problem is that we go to so many other drs almost weekly that my daughter was overwhelmed and we had noticed some almost instant vision improvements with the neuro-chiro, who also alleviates some of her pain..