First I will tell you a little bit my 18 year old daughter has been sick for 6 years we have gone to the best Dr J in CT, he has tried every combo possible, she test positive for lyme and babesia also clinical bart, she lays in bed day after day and crys because the pain is so bad. Dr J refered us to a neuro who thinks IVIG and IV antibiotics are where we are at. Also Dr J thinks Polyneruopothy I also agree.
The reason for my writing is my sister went to UMASS in Worc MA today because she also has lyme and has been infected for at least 20 years, she has 16 seizures a day she is really bad sometimes she cant even walk, anyways a neruologist there told her not to get a picc line because most people die from it or get severe infections, I tried to tell her that this is one person opinion.
She screamed at me saying she would never get a picc line and that I was crazy to consider for my daughter and myself.
I believe Dr J and her Neruologist that she needs this she has no life and hasn't for years
Can anyone offer any advice
Thanks so much
Posts: 200 | From Massachusetts | Registered: Apr 2007
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posted
I would defintely go for the PICC. Think it was what helped my daughter over the hump.
Yes, it has some risks and 1st few days were scary but we had weekly visiting nurses to check things.
Daughter did have to have PICC line pulled after 1 month because of site infection but no further problems from it once removed.
Posts: 126 | From MD | Registered: Mar 2009
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
It helped me get over the "neuro hump" as well.
I did have to have it pulled early b/c of blood clots, so it certainly does come with some real risks, but I am still glad I did IV ABX.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
My husband has had a central line in for over one year and a half for IVIG and IV antibiotics. No infections, no problems.
In the past year and half he has made great recovery. He's at about 90% at this point. He has stopped taking Vicodin because he now has very little pain and he has regained muscle and strength.
On just orals my husband continued to spiral downward. Sometimes oral isn't enough.
Posts: 984 | From San Diego | Registered: Nov 2006
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
I have had a PICC with no problem.
I had a central line for 6 and 1/2 years.
The IV turned my life around!!
Scare tactics are most often used by the IDSA camp.
Good luck!
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
I've had my PICC in for over a year and had no problems whatsoever. Just keep it clean always sanitize the connections really well and just use common sense.
Posts: 499 | From Indiana | Registered: Oct 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I had two PICCS two years apart. No problems at all. Keep it clean and dry.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I know a girl that was totally disabled from lyme. She needed IV antibiotics and IVIG. She has been doing IV ABx everyday and IVIG once a week. I think she started about 6 months ago...
She is now going to school 2 days a week, goes on a field trip with her family once a week, and is up and walking/doing things on her own now.
It has not been easy for her with all the herxing at the beginning, but her mom says she is now showing improvement every week.
Posts: 458 | From Miss | Registered: Mar 2009
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posted
Why is it that people balk at PICC lines for Lyme disease, but hospitals put them in all the time for patients who need care for other diseases?
If they were so dangerous hospitals would be loath to use them.
Posts: 374 | From United States | Registered: Nov 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
There are risks associated with PICC lines and there are complications with untreated Lyme disease. You have to weigh the risks with the benefits. If you've tried everything else it may be time to move on to IV. Your doctor should help guide you in this decision.
I wish that I had listened to my doctor and gone to IV months ago. He told me over and over that I needed it but I didn't want to deal with the IVs. I too was scared of the complications. Eventually my Lyme symptoms grew scarier than the potential PICC complications. I'm finally seeing improvement with a combo of IV and oral meds.
If you choose to get a PICC try your best to take good care of it. Keep it clean and dry. If you think that there is a problem you can always have it pulled and replaced.
Good luck in your decision.
Posts: 5237 | From here | Registered: Nov 2007
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posted
PICC is the way to go. I never really found it an inconvenience except when I wanted to go swimming. It is easy, and that way you can get the meds that really work well.
I got my first PICC line at 20. Its pretty easy.
I did end up with the complications of having a picc line. While climbing over a fence (I am such an idiot, I was feeling the best I ever had and for some reason it did not strike me as the bad idea it was...) I fell, and caught myself with my PICC arm twisting it around. Over night, I developed 7 blood clots and had to be in the hospital for a while and then on a lot of blood thinners, but now i am out of the woods and actually about to get a new one.
1# advice: DONT EVER BUMP THAT ARM! EVER! and everything will be fine.
posted
Actually, to clarify that i am not completely an idiot, the 'fence'(actually more like a wall) was only 2 feet high. when I jumped down from the 2 feet up my sandle broke which caused the fall that made me use my arm...
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