posted
Hi. I just joined this forum and I already introduced m yself on the general support forum.
Now I have a medical question.
I was diagnosed with Lyme (no coinfections) two weeks ago. I had been through many doctors and many provisional diagnoses that were ruled out -
MS, sarcoidosis, temporal arteritis, transverse myelitis, and a host of other things. I read about lyme and saw a show on it on TV and started asking the doctors. Three had actually already tested me for it - but using the ELISA test and I was negative. I had MRIs, EMGs, ABCs.
My symptoms were: urinary incontinence,, urgency and frequency, numbness and tingling in feet, hands, night sweats, swollen lymph nodes in the back of my neck, horrible burning intermittant pain in my legs, arms, and pelvic area, memory problems, leg weakness, muscle cramping, eye and finger twitching, double vision, and anxiety from not knowing what was wrong with me and imagining all the possibilities.
I found a dr. who treats lyme and she sent my labs to igenex and lo and behold - I'm positive. I'm on oral Ceftin and am trying to make the decision about IV Rocephin which she wants to order.
My insurance does not cover home health care and probably not the abx either from what I have read. Has anyone out there had a picc line and NOT used home health care? How would this work? Nice to meet you all! Lizzie
Posts: 5 | From Houston, TX | Registered: May 2007
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
you may want to look into oral Vantin it is a 4th or 5th generation cephalosporin and used in many severe infections by id docs. it is also generic and fairly easy on the body.
when my picc clogged up the doc gave me this and worked just as well if not better.
this is not a well known drug on lymenet. my lyme do is also infectious disease ,travel medicine and rare tropical medicine doc. trained in philly and by me.
may want to ask doc. vantin and plaquenil worked for me.also vfend for systemic yeast very very important.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
Yes I had a PICC line and no home health care. It was too expensive-e.g. I was taking magnesium sulfate intravenously. One vial which was four doses cost me $4.00 at the pharmacy and $150.00 through home health care.
Find out if your pharmacy plan covers injectable medication and then have your doctor write you a prescription. Regular pharmacies like CVS can get the drugs, sterile water and I.V. bags with a prescription.
For the tubing, needles for mixing,etc. you can get these from a medical supplier at a significant reduction from home health care.
If someone in your family learns as my husband did to change the dressing-real easy- you can save the nursing costs as well. I did this for three years until my insurance caught on and refused to pay for the drugs through the pharmacy but it worked out great before that.
Posts: 425 | From NY, United States | Registered: Mar 2005
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Here's our experience. Our daughter has been infusing Rocephin for the past 15 months.
The most important issue is the insertion of the PICC line. It must be done correctly and, from our experience, in a hospital or medical facility that is able to do it properly.
Secondly, the process of doing the infusions is not that complicated or difficult. At first I did all the necessary preparation of the antibiotic and the saline, heparin, etc. I also did all of the dressing changes and infusion site cleaning.
For the past 12 months my daughter has done everything herself. She mixes the Rocephin with sterile water, loads all of the syringes and does the infusion. She changes her dressings once a week and keeps everything in the required sterile environment.
Like I said, she's had the PICC line for the past 15 months and it looks great.
We make appointments with her GP every two weeks to have liver blood work done and to have his nurse look at the PICC line site.
She also makes sure to take her Actigall to reduce the possiblity of gallstones, etc.
Good Luck in your decision.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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Call your insurance company several times, each person may give you a different answer, and it is possible you could be covered for the IV abx. It may only be for a month, though. Make sure they define what "covered by insurance" is. I ended up paying a few thousand dollars out of pocket for only 2 months of treatment (including the IV insertion).
I went to my PCP to have a nurse change and clean my dressings, in order to save money.
Good luck!
P
Posts: 449 | From Vermont | Registered: Nov 2004
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posted
I've done PICC line infusions with and without Home Health Care, which is a giant thorn in my a**.
Must of been spoiled when my doctor didn't require a home health agency to tend to me, and trained my boyfriend to do dressing changes. They had a 24 hour answering service, and if we ever had any questions about the line they'd answer immediatly.
When I went back on home health care months later, I was ready to strangle the nurses. My boyfriend was able to change the dressing for 4 months, no problem. My nurse alays put the statlock in the wrong spot - either twisting or bending the line in a way that would cause major pain and irritation. (I'd always have boyfriend go in and fix the damage.) She just didn't listen.
Then, we'd always cut a little slit at the end of the bandage so that the line wouldn't pull at it and cause more irritation to my overly sensitive skin. One day my brainiac of a nurse decided that it was a good idea to do it while the bandage was on, and subsequently cut my line.
To make matters worse, I had blood pouring out of my PICC line for 10 minutes because she had to get "authorization" to pull it. I about did it myself - since I am the ultimate boss when it comes to my medical care.
I ended up with a medi port. It took five nurses, 15 needles, a week, and the interventional radiology team to access it. The nurses claimed they couldn't feel the port under my skin - which was B.S. because you could not only feel it, you could see the outline. One accessed my breast (not my port) and allowed me to infuse in excruciating pain until a softball sized lump appeared (I could have joined the circus with my third boob) and the boyfriend and I decided to have a go at deaccessing without home health.
The training supervisor is now my home health nurse, and can access my port first shot everytime. She only comes out to access once a week, and since I hate the nursing company, lets me have the dressing how I want it - not how the protocol says to put it. She also makes sure I have plenty of supplies so I can change the dressing myself during the week - which I am very thankful for since I now workout and get sweaty, requiring a dressing change now and then.
Bottom line, if my doctor would allow me to be home health free again, I'd jump at the opportunity.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
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