Until recently, we could not find a MN doctor to prescribe IV antibiotics and the home health care agencies would not take a script from an out-of-state doctor.

Does any have any tips or information to share?

(I haven't been posting very much for the past few months. For the people that don't know about our situation, Jake & Jordan have been ill since 1999. We were diagnosed in 2001 and have tried many oral antibiotics.)

Wishing you all the best!

Jess pulled his stitches out about 4 different times over the last few months. Pretty hard to keep a 15 year old boy from using that arm frequently.

We got to know the ER doc pretty well though, because of all the restitching he had to do. I think next time their going to use cable wire !

I had to do the same thing and I made the mistake of doing full dose Claforan 7 days a week. Be sure to have a LLMD aware of the treatment protocol. The MD who was kind enough to Rx the IV, thought that more was better which is the opposite methedology of most LLMDs who pulse and skip days. They also didn't feel a Cyst buster was needed.

As a result, my WBC became so low that I had to stop and have the line pulled. Claforan was much easier on me than Rocephin which sent my ALT to the moon.

Keep a vigilant eye on the PICC sites to make sure they're clean and dry. I was allergic to Tegaderm and found "Opsite" dressing was much easier on the skin.

Good luck and let us know how they make out.

ps. I should've bought stock in Saran Wrap and 3M as I went through it and Paper Tape like water. Great for keeping the PICC site dry in the shower.

Thanks for the info!

Dr. C prescribed the IV Claforan. I thought it would be every day but now I'm not sure.

Dr. Jones & Dr. C both wanted the kids on IV but the home health care agencies would not take an out-of-state script.

What was your schedule?

When Max was on IV claforan, Dr.J dosed twice a day, but the rec. dosing is q8hrs. He had a low WBC at one point and we stopped for a week or so until it came back up, then it was stable after that.

We had the same experience as Foggy...had to switch to Opsite dressing.

Will the PICC be put in at home by a nurse or in the hospital?

quote:

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Originally posted by blackmon:

Will the PICC be put in at home by a nurse or in the hospital?

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The home health care agency is sending a nurse here to put in the PICC.

We need to talk sometime!

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The two done at home were at the bend of my elbow but the hospital did it on the inside of my arm between my elbow and shoulder.

All of them have used little wings attached to the catheter and then secured to my arm by a sticky pad with a locking device. No stitches.

We are waiting to hear if the insertion was OK. If so, the nurse comes tomorrow to start the meds.

You're going to have dueling bags going

Ry and I used to have drip races..(just kidding)

Ya, if the PICC is inserted out of hospital ..by a nurse or Doc, then you get chest X-ray to double check the location of the tip of the line.

Ryan started out on IV Claforan, quite ill at the time.

He is one of the ones whose WBC's plummeted (to 1.4, actually)..and Doc J had him go off a few days, and it came back up..but went right down again at which point we switched to Rocephin.

Doc J explained that this simply occurs in some cases on Claforan and not in others...no way of knowing which or exactly why. For many, it simply requires stopping for a few days if the WBC's register low..
then they go back on and it is stable.

It's my understanding it doesn't have to do with dose, as Doc J does not pulse IV ..
but does monitor the bloodwork weekly to be advised of a drop.

Doctor E. (Bartonella expert in NJ) feels this drug has duel efficacy against Lyme and Bart..tho - this has not been documented thus far, just by observation.

TexasLyme Mom mentioned her daughter had a big drop in WBC on Claforan as well..and she felt it was part of an initial Herx.
If the search function is working again, you will also find her posts on it, where in their case they dealt with issues of the med being caustic by using a sloooooow drip rate.

Then again -- there are others who do not experience this at all, nor the WBC issue..just something to look out for and talk with Doc, ect.

I tend to think at least for Ryan, it was more Herx related, as he struggled with low WBC's the whole time even on Rocephin, but not as low as on Claforan.

Lish's Mom's daughter also was in the low..and Terri posted on using Planetary Formulas brand (only) of cordycepts. She said that supplement kept Lish in the normal range. it also raised Ryan's a couple of points when we used it.
On Rocephin, it is the gall blader that need be watched closely.

Just throwing out random bits of info here.

Will you be being taught how to change dressings and administer the doses eventually?

Also -- I'm sure Home Health Care or Doc C will supply you with EpiPens..which you just need on hand just in case of allergic reaction.

I also should tell you that the best cover we found by far for Ryan and I was from
Xerosox. You can look at it and order on the web. This thing is indestructable and keeps the arm dry, even if submerged. You can swim in it.

Doc J always has split Ryan's IV doses
(Claforan and Rocephin..tho - I think it's the norm to do Claforan twice)..when he switched to Rocephin, he also split it into two infusions.

He felt with the severe neuro infection this was best.

Ryan has been on Plaquenil throughout IV, and also on Rifampin and Mino (yes, all at once)
Doc j has never felt he needed Flagyl..he says he sees some of the kids do after IV, and some done't. He tells by following progress. We are all so different.
He needed and benefitted greatly from Rifampin, and I feel the Claforan was really efective from what I could tell in the short time he was on it..but as I said he could not sustain his WBC's on it.

I was advised about the IV balls..that you can get and wear around the waist..
good for teens...but never got that for my son, for certain reasons. You may want to check into that once you guys are settled.

Some insurance/ HHC companies cover it with Doc orders.

If you ever have to transfer to self pay, or independant from Infuserve..there are med assistance programs you can check with requirements...and for supplies, Infuserve in Florida is excellent..
Their prices are WHOLESALE, and they will mix and bag your meds and ship them to you overnight, even if you get the meds free elsewear.

Please feel free to e-mail anytime if you need anything or have any questions.

I will tell you, since your boys seem to have a brain infection of moderate to considerate level (as Ry did, but different symptoms)..that if the IV is effective, you vould possibly have an initial true Jarish-Herxheimer.

I feel the true Jarish-Herx die off is mainly for the period of weeks or months after initially starting an abx that produces die off of bacteria..
and I refer to the monthly "cycle herxes"..while remaining on the same protocal ..as 'flares'..

In any event, both my son and I became extremely fatigued and achey and experienced exacerbation of some neuro-symptoms in the initial weeks on IV, both of us with severe neuro-centered Bb.

Best of luck with a smooth transition on to meds, and that this is the thing that turns the corner for those boys!
Oftentimes, there is just one med that really kicks in for a patient in the brain..whether oral or IV.

All the very best,

Mo

Jake & Jordan did OK with the PICC insertion. Jake's needed to be adjusted.

The IV nurse came today to teach us how to administer the med. She was here for 4 hours.

They've had 2 infusions today but will have 3 daily from now on.

The IV nurse did a blood draw today and Dr. C called us tonight because he was notified that Jake's potassium level was dangerously low. He told us to take Jake to the ER for retesting.

We called the IV nurse and she came out and did the blood draw. She called and said the level was normal.

Mo - thanks for all the info. I'm checking into the Xerosox. We are using a syringe and pushing every 2 minutes. The nurse told us about the Intermate system and I think we will try that next week.

salydega - we have always been told that home health would not take a script from an out-of-state doctor. I just starting calling all the home health agencies and Health East said they could take an out-of-state script. Their phone number is 651-232-2800.

I'll keep you updated!

You and your family have been down this road for a l o n g time (as we have been too - since 1999).

We so desparately wanted the IV meds, too. Her 13 months of Rocephin a couple of years ago didn't actually help that much... sad.... but I can say that she just left with my hubby to go apply for her driver's license again. She's hoping to be able to drive short distances. She hasn't driven since 1999. Now at 23 yrs old she's finally strong enough again to try short trips.

I'm not meaning to say this to discourage you with the IV - but to give you encouragment as even when the road of LD is sooooo long as it has been with our children.... there is hope!!!!!!!

Praying for you and yours!!!!!!!

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If you get the choice to sit it out or dance...

I also just wanted to add my experiences with WBC drops. My WBC counts dropped while on Rocephin (I've never been on Claforan). It wasn't low enough for me to be taken off the Rocephin immediately and I ended up stopping it because of gallstones and I wasn't seeing continued improvement. So, I think it can happen with either of these IV meds (and maybe cephalosporin antibiotics in general).

I'll be thinking of all of you!

--Annie

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I am happy for your boys...Claforan did wonders for me.