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Anyone try IV abx?


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8 replies to this topic

#1 jjl

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Posted 11 November 2011 - 04:25 PM

All,

After one yr of lyme treatment, our older son (11 yo) is still having a tough time. Things actually seem to be getting worse. Over the last yr, he has been on 4 months of Mepron, Doxy, and Zith for babesia, then switching to 7 months of Rifampin and Zith for bartonella, and overlapping Alinia for the last 4 months. We have not seen many gains at all and the symptoms are as bad or worse than a yr ago when we started. Granted our detox support has not been great and we are adding more of that, but a couple LLMDs we talked to said they would have expected more progress and certainly less negatives. Our main LLMD suggested IV abx as an alternative. The LLMD started using it 3 months ago with 16 patients and is seeing some good things.

Has anyone tried IV abx for their child? If so, I would like to hear positives and negatives as well as how hard it is for you as a parent to administer on a daily basis. I know many use a picc line, but the LLMD is recommending a port line for our son because I think they said it is harder to grab and our son would probably try to yank on it.

I appreciate any feedback from those of you that have tried it. We are a little nervous, but he has had a real tough time the last several months and really needs something to help him get better. I believe our protocol would be a port line with a pressure fed ball (with abx inside that). We would use IV Merrem (neuro lyme and bartonella) on M/W/F and Clindamycin on T/Th to cover all bases. Weekends off.

Thanks ahead of time, John L


#2 Iowadawn

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Posted 11 November 2011 - 04:35 PM

We added colloidal silver spray after a year, specifically for the bart b/c of lackluster gains that looked like yours after a year of tbi tx. ALong with a protocol of abx and IVIG every 8 weeks we have started to gain some serious ground. At the moment IV abx are not recommended by the llmd or his psychiatrist b/c of the fear that he would pull out the picc line in a rage. We are doing much, much better!! Got a long way to go, though.

Dawn

#3 jjl

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Posted 11 November 2011 - 05:51 PM

Dawn, that is why our LLMD is recommending a Port Line which I guess is harder to mess with, although I need to learn more about it. John L

We added colloidal silver spray after a year, specifically for the bart b/c of lackluster gains that looked like yours after a year of tbi tx. ALong with a protocol of abx and IVIG every 8 weeks we have started to gain some serious ground. At the moment IV abx are not recommended by the llmd or his psychiatrist b/c of the fear that he would pull out the picc line in a rage. We are doing much, much better!! Got a long way to go, though.

Dawn



#4 tpotter

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Posted 11 November 2011 - 06:09 PM

We added colloidal silver spray after a year, specifically for the bart b/c of lackluster gains that looked like yours after a year of tbi tx. ALong with a protocol of abx and IVIG every 8 weeks we have started to gain some serious ground. At the moment IV abx are not recommended by the llmd or his psychiatrist b/c of the fear that he would pull out the picc line in a rage. We are doing much, much better!! Got a long way to go, though.

Dawn


We used IV abx from May - July (although I would be afraid if there was any chance he would pull out the line.) That being said, I do think it would have made a huge difference if he hadn't had bad reactions to 2 of the abx (flaggyl and azith), and was really only able to use cleocin alone in the end. If you're going to do it, I would highly suggest winter, because we ended up having no choice but to pull it out in the end, because there was sweat getting under the tape, and causing skin breakdown.

I agree with IowaDawn that IVIG has helped us, too, and you might want to consider adding that in, as well. Your child's response to Lyme & co- is autoimmune, and the immune system may need a little help.

#5 mdmom

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Posted 25 November 2011 - 06:13 PM

JJL--We are headed down the IV path with our 14 yr old son within the next month. Have you started this process yet?

I am searching for info on the ups and downs of the chest port as well. I was under the impression that administration of the abx this way would be pain-free once the port was inserted; however, I just read on-line that a needle must be inserted in the port and there is discomfort with this.

9 years ago my son tolerated a PICC line very well at age 4 and there was no pain associated with it once it was inserted.

Can anyone help me understand what a chest port experience is like?

DS16 dx with PANDAS/Lyme & Co. at age 13 symptomatic since age 2; originally dx with Asperger's, OCD, Anxiety, PTSD
DD14 dx with Lyme, Babesia, Bartonella at age 11, symptomatic from birth

Mom & Dad with various symptoms for 20 years; both M & D being treated for Lyme & Co.

Also addressing MTHFR, diet (GF/CF/GMO-free or Organic),


#6 911rn

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Posted 25 November 2011 - 06:44 PM

JJL--We are headed down the IV path with our 14 yr old son within the next month. Have you started this process yet?

I am searching for info on the ups and downs of the chest port as well. I was under the impression that administration of the abx this way would be pain-free once the port was inserted; however, I just read on-line that a needle must be inserted in the port and there is discomfort with this.

9 years ago my son tolerated a PICC line very well at age 4 and there was no pain associated with it once it was inserted.

Can anyone help me understand what a chest port experience is like?


There is a stick with a bent 90 degree needle. Called a huber needle. Looks like a "buttterfly" needle often used to draw blood but bent 90 degrees so it can be flush with skin once it is put in. Hold it by little plastic wings and push it straight through skin into the rubber port beneath skin.

The huber needle can be left in for up to 7 days if having continuous daily infusions and it is dressed/covered with a transparent dressing similar to what is put over IV or PICC. It is a minor stick, small needle. In our chemo unit- the nurses spray site with a freeze spray and the patients say they don't even feel it.

If having long term therapy- over 3 weeks- I would opt for port over a PICC line for my child. More invasive initially but less risk for infection in the long run. Ports can stay in for years. Can use ports to obtain blood etc.There will be a visible round "lump" under the skin- about the size of a nickel if single lumen. Double that if double lumen. Double lumen sort of looks like a "8" turned sideways under the skin.

Kids tend to have little fat in their chests so expect it to be visible- just to let you know, in case, your child is self conscious about appearance with shirt off etc. Ports can stick up a bit even though it is implanted under the skin. Everyone's port looks a little different...location, how it seats in skin, much depends on surgeon..all similar but no two exactly alike. Some are poked up higher than others. Some are buried more. Some are obvious, some you have to palpate and look for. Just depends on the person/surgeon. I had one women who had hers in a breast!

I've used them for 20 years with patients. HTH!

#7 911rn

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Posted 25 November 2011 - 06:55 PM


JJL--We are headed down the IV path with our 14 yr old son within the next month. Have you started this process yet?

I am searching for info on the ups and downs of the chest port as well. I was under the impression that administration of the abx this way would be pain-free once the port was inserted; however, I just read on-line that a needle must be inserted in the port and there is discomfort with this.

9 years ago my son tolerated a PICC line very well at age 4 and there was no pain associated with it once it was inserted.

Can anyone help me understand what a chest port experience is like?


There is a stick with a bent 90 degree needle. Called a huber needle. Looks like a "buttterfly" needle often used to draw blood but bent 90 degrees so it can be flush with skin once it is put in. Hold it by little plastic wings and push it straight through skin into the rubber port beneath skin.

The huber needle can be left in for up to 7 days if having continuous daily infusions and it is dressed/covered with a transparent dressing similar to what is put over IV or PICC. It is a minor stick, small needle. In our chemo unit- the nurses spray site with a freeze spray and the patients say they don't even feel it.

If having long term therapy- over 3 weeks- I would opt for port over a PICC line for my child. More invasive initially but less risk for infection in the long run. Ports can stay in for years. Can use ports to obtain blood etc.There will be a visible round "lump" under the skin- about the size of a nickel if single lumen. Double that if double lumen. Double lumen sort of looks like a "8" turned sideways under the skin.

Kids tend to have little fat in their chests so expect it to be visible- just to let you know, in case, your child is self conscious about appearance with shirt off etc. Ports can stick up a bit even though it is implanted under the skin. Everyone's port looks a little different...location, how it seats in skin, much depends on surgeon..all similar but no two exactly alike. Some are poked up higher than others. Some are buried more. Some are obvious, some you have to palpate and look for. Just depends on the person/surgeon. I had one women who had hers in a breast!

I've used them for 20 years with patients. HTH!



Link for some photos- can see ones that are just present under skin- see lump. These not "accessed" with huber needle- then you will see some dressed with gauze/transparent dressing. These are accessed with huber needle.



https://www.google.c...iw=1366&bih=617

#8 Wilma Jenks

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Posted 25 November 2011 - 08:02 PM

What is "colloidal silver??".... and how is it given? orally, ivig??? i asked our lyme doc, about trying IVIG, and he said is could cause problems for a child with bartonella?

#9 cobbiemommy

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Posted 29 November 2011 - 02:50 PM

What is "colloidal silver??".... and how is it given? orally, ivig??? i asked our lyme doc, about trying IVIG, and he said is could cause problems for a child with bartonella?


Our son has Bart and he did wonderfully on IVIg, but that was before we knew he had Bart. After it wore off, in about six weeks, his rash popped out and his foot pain almost unbearable. He is slowly gaining ground with oral antibiotics. Funny thing is, he has asked for the IVIg to be done again because he felt so good afterwards. We are looking into whether it would be approved by his doc.

Edited by cobbiemommy, 29 November 2011 - 02:51 PM.





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