I have a question about the whole IV abx thing. If the Ketek doesn't work my dr wants to do the iv. He said they put it in your chest, but how long does it stay there? Actually what I mean is how long is the iv treatment? Does it depends on how I react to it?

Please help, I need some answers. I don't think to ask these when I am in the office.

how long you are on the IV is dependent on your symptom response, your doctor's opinion and how long your insurance will cover it, unless you have the $$$ to pay out of pocket.

you can take the ketek with the IV if the IV is rocephin. they are different drugs with different properties for killing the lyme disease organism.

the ketek works on the inside of the cell (intracellularly) and the rocephin on the outside of the cell (extracellulary).

Also has had 2 and neither prodeedure was long or difficult..

If on Rocephin, you need Actigall or some gall bladder med.

You must also use stat locks at the bottom of the picc to insure it staying in place.Had first one fall out.

Make sure the clamp is always tight when not infusing..My daughter has had 2-3 air embolisms..They are very painful and life threatening. Also do not fall asleep while infusing..You must immmediately turn off machine and clamp off picc line.

And be careful of redness/pain/swelling..The 2nd picc was removed yesterday due to a blood clot..Unsure of the cause of it. BUT NOT DUE TO LACK OF ADEQUATE FLUSHING..

Time will depend on success of protocol and money, if insurance agrees with continued treatment..So far so good,b ut not sure if they will spring for a 3rd picc line..

Also with children it can be rough with one in school..A teacher admitted to me that she was put off awhile and many of the other students asked many questions when my daughter was absent for the first time after the picc was in.

My daughter wears it as a badge of honor..Now they will know I am sick and not crazy!!

It was essential to my daughters protocol..She can't tolerate the orals in the dose necessary to cross the blood brain barrier and kill the infection.

Good luck..It is a rough trip..

I was on 400 mg of Doxycicline as my first treatment. I had headaches and tachycardia after a few weeks. So, my MD retested me and my Bb load was higher than the original test. It was her opinion that the Doxy was stirring up the chetes and I needed to hit them hard, especially since my first herx was frightful. I literally thought I was going to die. I had no clue what a herx could be like before that.

I went to a specialist and was put on IV Rocephin. I had a PICC line inserted into my Superior Vena Cava (vein to heart) that was sewn to my bicep, right above the inside of my elbow. That was an easy procedure.

The Rocephin was really hard for me to tolerate for about 5 weeks. It did get better though. Actually, the first 3 weeks I had a great deal of chest pain - the line was actually touching my heart & had to be pulled out and redone. I did the IV for 12 weeks the first time. I did not do any adjunct antibiotics while on the Rocephin the first time. Some MDs like to see how you react to an Rx before adding another one in. I did improve on the Rocephin but had terrible Candida because I didn't grasp how serious it was to change my diet.

I went from Rocephin to oral Ceftin, which is pretty much the same Rx.

During the entire time on these meds I had weekly bandage changes and had my liver panel and CBC done every 2 weeks. This is very important. If your liver is not within range your gallbladder will surely suffer the consequences. I was told to take Milk Thistle and DGL licorice while on this protocol. I did not lose my gallbladder.

If you are having trouble with 400 mg of Ketek, you might do better on IV meds that bypass the gut. I have a terrible time with orals. IV and IM meds are so much easier for me to handle. I did, however, just add oral Zithromax back into my protocol because my MD wants to hit the Babesiosis harder. I am nauseas and have a headache every day. I am going to ride it out for a month & see if I can become tolerant. If not, my MD might switch me to IV Zith.

Don't be afraid of IV meds. Just be sure to keep the line clamped and have the dressing changed. Always flush the line, as instructed to prevent blood clots.

If you do get a port in your chest, it may be easier to deal with. Some chest ports are completely covered by the skin and you can swim and shower without worries. Often times children will get a chest port because there is less stuff dangling for them to yank on. A chest port is not uncommon.

Hope this helps.

Are you really seeing an LLMD? Is he/she a member of ILADS?

I agree that the quote "If the Ketek doesn't work we'll do IV" sounds like duck talk to me (quack - doesn't really know about Lyme).

IV should be the last resort - often times it takes a few different combinations of antibiotics over the course of several months to make that determination.

Have you had Lyme for a long time? Regardless, treatment for one month is not enough time to make any kind of determination on treatment protocols.

I for one am of the belief that if you don't respond the orals, then perhaps the dr missed treating coinfections. Testing for coinfections is almost as bad as Lyme tests, and it takes a skilled diagnostician to make that determination.

And I also believe that antibiotics are not the end-all cureall of this disease (and so does my LLMD).

Do some homework on your 'dr' and find out if you are being treated by the right type of doctor. In the meantime, give your current medication a few more months and worry about the IV if it ever comes to that.

quote:

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Originally posted by Kait:
does it bother him? I am nervous if I have to get it in.

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Doesn't bother him at all. As one of the other posters mentioned, he almost wears it as a "badge of honor".
Didn't know about the gall bladder situation regarding Rocephin. THANK YOU for the information, I'll get on it pronto !