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Lyme Disease Message Board


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Re: Lyme Treatment
Jul 13, 2007
[QUOTE=bigstan;3097093]Well, I just received a call from my LLMD's office. I am to be treated for Lyme. I have to meet with a surgeon to have a picc line inserted. I don't know anything about this or the type of medication I will be receiving. That will be explained to me when I set up the appointment. Now I am really nervous. I didn't speak to the doctor, but his secretary called and said I have to be treated immediately. I know his decision to treat was decided by the IgG IgeneX report. Now I have some confusion because I had 4 bands positive with 2 bands Indeterminate. The CDC says you have to have 5 or more bands to be considered to have Lyme. But its possible my doctor made his decision because it was so close. If I start treatment and it wasn't Lyme but something else could the medication harm me?:confused:

Does anyone know anything about picc line insertion and medication. What it actually is, what medication, and how long? What can I expect? Ticker are you aware of anybody being treated this way?

Thank's everyone. New post soon. :)[/QUOTE]

Hi BigStan -

I had a PICC line put in a few weeks ago and am giving myself IV Rocephin daily. Like Ticker said, once you get used to doing it, it is no big deal at all. The only concerns are not getting it dirty (yahoo - no diapers and cat litter for a while for this guy!) and you can't lift more than 10 lbs with the arm it is in.

Putting it in is no big deal. They numb up your arm and you don't even feel it. Takes (literally) 10 minutes to do.

I just found out my Dr (PCP) is going to keep me on it for at least another month. Again, yahoo! I feel like crap and am thrilled by that (Jarisch-Herx.) I felt ok the first two weeks on the IV and this week I have felt horrible - die you little buggers, die!! :)

If I can answer any more questions you might have, I'd be happy to help.

Take care and God Bless, Andy
Re: Lyme Treatment
Jul 14, 2007
Hey AGM. Thanks for the information. I looked up picc insertion and just don't like the fact that a tube travels up next to the heart. I know that this procedure is done many times for cancer patients. Its just the anxiety of it all. I'm trying to figure out the difference between IV and oral antibiotic treatment. Why my doctor chose the IV over oral tablets. Is this because I have long term Lyme disease? Do you have any reaction to the Rocephin? I know you said your going through the Jarisch-Herx. Do you know if most patients being treated for Lyme go through the Jarisch-Herx? How many ml a day are you on? How long does it take to infuse yourself? Can you adjust the drip like a regular IV to make it faster? Do you have a hard time sleeping with this thing on your arm? Do you have a home-health care nurse?

Hey Ticker, Thanks for the great information. I found the Mid-Arm Protector on the Brown website and ordered it. So that will help keep out any infection. Were you treated by a picc line when first diagnosed? What is better IV or orals?

Thank's Agm and Ticker for the response
Re: Lyme Treatment
Jul 14, 2007
[QUOTE=bigstan;3098842]Hey AGM. Thanks for the information. I looked up picc insertion and just don't like the fact that a tube travels up next to the heart. I know that this procedure is done many times for cancer patients. Its just the anxiety of it all. I'm trying to figure out the difference between IV and oral antibiotic treatment. Why my doctor chose the IV over oral tablets. Is this because I have long term Lyme disease? Do you have any reaction to the Rocephin? I know you said your going through the Jarisch-Herx. Do you know if most patients being treated for Lyme go through the Jarisch-Herx? How many ml a day are you on? How long does it take to infuse yourself? Can you adjust the drip like a regular IV to make it faster? Do you have a hard time sleeping with this thing on your arm? Do you have a home-health care nurse?

Hey Ticker, Thanks for the great information. I found the Mid-Arm Protector on the Brown website and ordered it. So that will help keep out any infection. Were you treated by a picc line when first diagnosed? What is better IV or orals?

Thank's Agm and Ticker for the response[/QUOTE]

Hey Stan -

I was diagnosed a year ago. My Primary Care Dr did the standard one month of antibiotics (100 mg twice a day). After a month he tested me again and the number (ELISA) was even higher. he said there was nothing more he could do for me. Ended up seeing a "Lyme Specialist" (LLMD) in December and having my blood tested by IGenex. Obviously positive.

I then went through 6 months of Doxycycline at 200 mg twice a day. Seemed to do nothing and I felt worse, but not herxing. Herxing generally means that after you have started a round of antibiotics treatment, if it works, you will start to kill off the spirochetes and they release their toxins when they die - thus you feel worse. It's not unusual to hear (or read) someone with Lyme say something like "I'm feeling lousy! Isn't it great?!" Sometimes it takes a while on antibiotics to feel herxing. I don't think I did very much on oral antibiotics. Obviously not enough as it is a year later and I am still getting my butt kicked by the little buggers. They could tell from my IGenex Western Blot that I have had it for quite some time.

It got so bad (my Lyme fog, etc.) that my Dr ordered an MRI which showed I had enlarged ventricles in my brain (I still have to see a neurologist to get their take on the MRI). When my Dr saw the results, he said "enough of this. It's been over a year. Lets get you on IV Rocephin" (insert cartwheels and confetti here). He (my PCP) is still not too Lyme-literate but he seems to be more so than he was last year! Hopefully this is the case and he will continue to work with me on this.

I am not exactly sure how much I am on. It says "1GM/100ML". I just finished week 3 and convinced my Dr to keep me on at least another month, hopefully longer. The whole process takes about 45 minutes including "flushing the lines" with Saline and Heparin. The actual infusion takes about 1/2 hr, 45 minutes if the Rocephin is just out of the fridge (they say take it out a few hours before but sometimes I forget). The IV is in a plastic bottle and inside it looks like a little rubber balloon (the whole thing is about the size of a baby bottle if not smaller). The rubber "balloon" inside forces the antibiotic solution through the IV tube and into your PICC line. Pretty ingenious if you ask me! I had a home health care nurse come to the house once and show me the ropes. She also gave it all to me in step by step instructions too. Nerve wracking at first but now I am an "old pro" at it :cool: They change the dressing once or twice a week too (I go to their office but they really should come to me - I just don't like waiting around all day and can do it on MY schedule). Some days I don't feel up to driving though so it can be a pain.

I know what you mean about having the tubes in and them being so close to your heart. I have a 16 month old and a 3 year old and I am constantly worried about one of them pulling on it. After the initial few days, you pretty much forget about it most of the time. Trust me, I was freaked out by it at first too!

Sleeping isn't too bad. You just can't sleep on that side if you are a "side sleeper" (and I am).

Well, btter get moving for now. Hope this helps Stan, feel free to ask any more questions!

Take care and God bless, Andy





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