iv antibiotics

[Guest guest]

Hi Libby. Yes you do need daily doses. You can do it at home. You will need

the services of a home care nurse who will come to your house usualy twice a

week to draw blood and take care of what ever method of infusing you decide. I

had a life port installed which will require minor surgery that is ambulatory.

You may also have a pic line installed that should be done either a good iv

nurse or a surgeon. That takes about 10 minutes. Whatever you decide good

luck and God Bless. Rich

[Guest guest]

To those of you who have been on long term IV antibiotics. Do you need

daily doses? Do you have to have in done in a hospital setting or are

you able to do it at home? Do you have a permanent line put in? How

do you manage this.

Libby

________________________________________________________________

The best thing to hit the internet in years - Juno SpeedBand!

Surf the web up to FIVE TIMES FASTER!

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[Guest guest]

Hi Libby,

There's long term and there's *long* term. I was on rocephin (IV)

for a month, which is long term. Other people here have been on it

and other meds for much longer. I had a picc line, the placement of

which did not go well because I pass out from IVs and so it would

only make sense to pass out from what is basically the same

procedure as an IV except after they poke your vein, they thread a

very skinny tube, almost a filament, up the vein and into the area

in your chest where the veins empy into the heart. That is a PICC

line, a periphally (in the arm) inserted central catheter. They

place it in the hospital, it should be done in X-ray where they can

see what they are doing by continuously imaging your arm, chest, and

the line using a fluroscope. The first dose of IV abx should also

be in the hospital, in a day surgery or outpatient bed, in case you

have a reaction to it.

Then you trundle off home feeling like you will never get used to

this thing in your arm that goes all the way in....ughgh! You get

home health care from an agency that does home IV maintenance. They

do chemo and Lyme usually. Here in CT, they do ALOT of Lyme. They

come once a week to clean the site, change the dressing, change the

extension tubing, draw your blood to make sure your liver functions

are o.k. and you're not toasting your gallbladder. All three nurses

I had were great. They also do education with you the first day to

teach you how to give your dose of abx and flush the line.

My abx were IV push, not a drip. That means I got big huge syringes

full of rocephin and I had to slowly " push " one in each morning.

The push was preceeded and followed by flushes, always, and there

was another flush 12 hours later. So you use the line quite a bit.

You do get used to it. Of course, in my case, I got used to it and

then they took it out. The line is said to only last 3 months

anyhow, but I read the other posts and saw people who say theirs

lasted longer. If I had to be on anything more long term, I

personally would want it changed after 3 months, but that's just

me.

Figures. Now I've got bloody headaches again. Probably I'll end up

with another line before the year is out. This time, I am DEMANDING

sedation, and not an ativan or valium. I took one last time. It

didn't help. I want versed.

Oh, I almost forgot. The reason the PICC is prefered to a mid-line

(which is a little small catheter only a few inches long inserted

into your arm) is because the abx rip up your veins after prolonged

use. Using a picc helps protect more of the vein, using a midline

doesn't. Plus they have to change the midline every week or

something horrible like that, at least that is according to my ID

doc and a nurse I know. I don't know much about ports, they are, I

think, non-periphally inserted central lines. That is, a central

line that is centrally placed, not periphally.

Hope that's helpful/useful info for ya.

-

[Guest guest]

Libby--

Yes, you need daily doses. Sometimes several times a day, depending on

the abx and what your llmd deems is necessary. I had new abx (when my

perscription changed) done in the hospital (the same place people go for

chemo). After that I administered them myself at home. I had a home

health care nurse who came once a week to take blood, change my bandage,

check vitals, etc. I learned how to change my bandage when necessary

and so did my husband. I had a picc line inserted (mine was done in the

hospital in radiology, many have had them done by a home health care

nurse but I would never do it that way not with it so close to my

heart). They lasted anywhere from 8 months to a year each. How did I

manage this? quite truthfully, not real well at first. I have always

been squeemish.... but after awhile you get used to it and you do what

you have to do to get better. Until the original site healed, it was

painful but after it started to heal, it really did not hurt at all. I

convinced them to take all my blood work through the picc instead of

sticking me every time I needed a blood test, which was usually weekly

(this is really necessary if you are using heparin because it is a blook

thinner). If you want more info, I can answer more questions if you

like. I had a picc continually for 3 1/2 years. I learned some ways

around things in that time.

Good luck.

Rhonna

Libsak@... wrote:

> To those of you who have been on long term IV antibiotics. Do you need

> daily doses? Do you have to have in done in a hospital setting or are

> you able to do it at home? Do you have a permanent line put in? How

> do you manage this.

> Libby

>

> ________________________________________________________________

> The best thing to hit the internet in years - Juno SpeedBand!

> Surf the web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!

>

>

[Guest guest]

Hi and everyone,

I am having a picc line done in the hospital under fluoroscopy next week. The

last time I was on IV ABX, the homecare nurses couldn't get one in ( " gnarly

veins') and I had to have a midline for six weeks...and have it changed many,

many times. I was hoping that having this done in the hospital was the way to

go, but now I am afraid that it will be painful. How bad is it? After what I

went through with the midline...will it be worth it? Also, sedation was not

discussed when I made the appt. Is it available, and do you recommend that I ask

for it?

Thanks,

Joan LI NY

----- Original Message ---

There's long term and there's *long* term. I was on rocephin (IV)

for a month, which is long term. Other people here have been on it

and other meds for much longer. I had a picc line, the placement of

which did not go well because I pass out from IVs and so it would

only make sense to pass out from what is basically the same

procedure as an IV except after they poke your vein, they thread a

very skinny tube, almost a filament, up the vein and into the area

in your chest where the veins empy into the heart. That is a PICC

line, a periphally (in the arm) inserted central catheter. They

place it in the hospital, it should be done in X-ray where they can

see what they are doing by continuously imaging your arm, chest, and

the line using a fluroscope. The first dose of IV abx should also

be in the hospital, in a day surgery or outpatient bed, in case you

have a reaction to it.

Then you trundle off home feeling like you will never get used to

this thing in your arm that goes all the way in....ughgh! You get

home health care from an agency that does home IV maintenance. They

do chemo and Lyme usually. Here in CT, they do ALOT of Lyme. They

come once a week to clean the site, change the dressing, change the

extension tubing, draw your blood to make sure your liver functions

are o.k. and you're not toasting your gallbladder. All three nurses

I had were great. They also do education with you the first day to

teach you how to give your dose of abx and flush the line.

My abx were IV push, not a drip. That means I got big huge syringes

full of rocephin and I had to slowly " push " one in each morning.

The push was preceeded and followed by flushes, always, and there

was another flush 12 hours later. So you use the line quite a bit.

You do get used to it. Of course, in my case, I got used to it and

then they took it out. The line is said to only last 3 months

anyhow, but I read the other posts and saw people who say theirs

lasted longer. If I had to be on anything more long term, I

personally would want it changed after 3 months, but that's just

me.

Figures. Now I've got bloody headaches again. Probably I'll end up

with another line before the year is out. This time, I am DEMANDING

sedation, and not an ativan or valium. I took one last time. It

didn't help. I want versed.

Oh, I almost forgot. The reason the PICC is prefered to a mid-line

(which is a little small catheter only a few inches long inserted

into your arm) is because the abx rip up your veins after prolonged

use. Using a picc helps protect more of the vein, using a midline

doesn't. Plus they have to change the midline every week or

something horrible like that, at least that is according to my ID

doc and a nurse I know. I don't know much about ports, they are, I

think, non-periphally inserted central lines. That is, a central

line that is centrally placed, not periphally.

Hope that's helpful/useful info for ya.

-

[Guest guest]

Joan,

I didn't mean to scare you! Fluroscopy is cool, it was actually

really interesting to watch! But I just couldn't take the threading

the line in part. It was not painful. It was just highly

unpleasant. Long story but here goes.

I personally have this exceptionally rotten tendency to pass

out....technically I have a " vagal " (vasovagal? someone medical want

to give a hand on the terminology?) attack or something like that.

The phlelbotomists *hate* to see me coming. I get sick,

disoriented, sweaty, and feel like I'm passing out and coming to

over and over. It happens from sudden pain but also can happen from

anything that drops my blood pressure too fast or stimulates a

certain nerve or my viens....it's complicated and silly and a major

pain in the ass. But, well, there's no way around it for me. I've

come to expect it and I try to avoid it when I can. I warned them

but they insisted that extra sedation would not be necessary. I

think they were in a rush actually. When I started to go under,

they kind of freaked out (they always do), they put an IV in me,

slapped some ekg leads on me, and sedated the crap out of me. All

of that is a reconstruction based on physical evidence when I came

around (hm...line...leads...vague recollection of trying to curl

into a fetal position with three people holding me down). I usually

have a very poor memory for these episodes. Then they restarted

with the other arm. It was over pretty quick once I settled down

I realized afterwards that in my case I should have insisted on the

extra sedation. But if you are normal (that is you don't pass out

from needles/blood draws/sudden pain/swallowing pretzels the wrong

way, etc.), then you're probably good with some mild oral sedatation

to take the emotional edge off. If you could take someone changing

your midline that many times and could withstand an at home attempt

to put in a picc line, I think you will be FINE!!!!! I pass out

from regular IVs sometimes even. I have every faith that you will

tolerate this procedure well given what you've already been

through.

If you are apprehensive (a good word to use with them) about the

procedure, you can (and probably will have to) ask for oral sedation

ahead of time. Someone can give you a script for one pill of

ativan.

Interestingly, I was told to be NPO I think 4 hours prior to the

procedure, which means they were at least prepared for the

possibility of extra sedation. So while they may not offer it, you

can ask.

It is not painful. Really, it's no more painful than an IV. It's

just that some people don't react well to having their veins messed

about with and I happen to be one of them.

Good Luck!

-

[Guest guest]

Thanks for the detailed info on your experience. I totally understand your

feelings...my Mom also has vasovegal (sp). She even passed out at the restaurant

where we were celebrating my birthday. It was particularly scary that time

becaused we thought she had stopped breathing! The ambulance came and she was

brought to the emergency room where they ran a million tests...but it was the

vaso.

I am pretty good with medical procedures if they are not too painful. I think

I'll call the hospital and inquire about the sedation, though. Feel free to

contact me offlist if you want to talk about it...unfortunately I've had

experience with it because of Mom.

:>) Joan

LI NY

[ ] Re:IV antibiotics

Joan,

I didn't mean to scare you! Fluroscopy is cool, it was actually

really interesting to watch! But I just couldn't take the threading

the line in part. It was not painful. It was just highly

unpleasant. Long story but here goes.

I personally have this exceptionally rotten tendency to pass

out....technically I have a " vagal " (vasovagal? someone medical want

to give a hand on the terminology?) attack or something like that.

The phlelbotomists *hate* to see me coming. I get sick,

disoriented, sweaty, and feel like I'm passing out and coming to

over and over. It happens from sudden pain but also can happen from

anything that drops my blood pressure too fast or stimulates a

certain nerve or my viens....it's complicated and silly and a major

pain in the ass. But, well, there's no way around it for me. I've

come to expect it and I try to avoid it when I can. I warned them

but they insisted that extra sedation would not be necessary. I

think they were in a rush actually. When I started to go under,

they kind of freaked out (they always do), they put an IV in me,

slapped some ekg leads on me, and sedated the crap out of me. All

of that is a reconstruction based on physical evidence when I came

around (hm...line...leads...vague recollection of trying to curl

into a fetal position with three people holding me down). I usually

have a very poor memory for these episodes. Then they restarted

with the other arm. It was over pretty quick once I settled down

I realized afterwards that in my case I should have insisted on the

extra sedation. But if you are normal (that is you don't pass out

from needles/blood draws/sudden pain/swallowing pretzels the wrong

way, etc.), then you're probably good with some mild oral sedatation

to take the emotional edge off. If you could take someone changing

your midline that many times and could withstand an at home attempt

to put in a picc line, I think you will be FINE!!!!! I pass out

from regular IVs sometimes even. I have every faith that you will

tolerate this procedure well given what you've already been

through.

If you are apprehensive (a good word to use with them) about the

procedure, you can (and probably will have to) ask for oral sedation

ahead of time. Someone can give you a script for one pill of

ativan.

Interestingly, I was told to be NPO I think 4 hours prior to the

procedure, which means they were at least prepared for the

possibility of extra sedation. So while they may not offer it, you

can ask.

It is not painful. Really, it's no more painful than an IV. It's

just that some people don't react well to having their veins messed

about with and I happen to be one of them.

Good Luck!

-

[Guest guest]

Jacqui,

For the last 12 weeks I've taken 2 grams of Rochephin. My LLMD also has me

taking orals in addition to the IV----Biaxin M-F (500 mgs x 2) and Tinamed every

other week. Along with Zithromax M-F. I believe his plan to move to Clindamicin

(sp?) soon. He's folowing the Jemsek clinic protocol. I herxed like crazy for

about 2 weeks about 5 weeks into it. Herxs have become a bit less severe.

Feeling ok but not symptom free yet. What do you think you will be on?

Good luck

Chris

--------- Re: [ ] IV Antibiotics

>

>

> I get my IV abx from my LLMD's office. He is a registered IV abx clinic or

> something like that that allows him to distribute. I go in each week and pick

up

> a week's worth of supplies.

>

> Good luck with your situation.

>

> Chris

>

> -------------- Original message ----------------------

> From: " jcdragonfly64 " <dragonfly2@...>

> > Can someone tell me who they use for their IV Antibiotics? I mean, so

> > you use a special pharmacy that mails them to you or do you just use a

> > team in your area? My Dr. wants me to use a team as a pharmacy but

> > they are out of my network that insurance will cover. It is very

> > difficult to know what to do...I want to be treated during my summer

> > break from school but time is ticking away as I await approval from my

> > insurance company on an exception.

> > Thanks for any help you can give!

> > J

> >

> >

> >

> >

> >

> >

>

>

[Guest guest]

just a thought.. did u say ur on biaxin and zithromax at the same

time? cuz they are very similar antibiotcs. it would be like being

on penicillin and amoxicillin at the same time. if so u may wish to

check with ur md that this is intentional and not a mistake etc...

have others continued their orals when they started iv antibiotics?

cfsguy

>

> Jacqui,

> For the last 12 weeks I've taken 2 grams of Rochephin. My LLMD

also has me taking orals in addition to the IV----Biaxin M-F (500

mgs x 2) and Tinamed every other week. Along with Zithromax M-F. >

> Chris

>

[Guest guest]

Well, the way the treatment started it was just doxi, then it was Biaxin and

Plaquenil, then they added tetracycline with those two...then they had me add

doxi again so it was the four of them...then I had that reaction and burned my

face badly and my hands. They took me off the doxi. Then I started to have no

results from any of it so they took me off everything for a few months, then I

was on Tetracycline only for about 4 months. Then I tried just Allicin

(garlic!!!) and some other herbal things...now I am on nothing. Just waiting for

Zithromax in the IV I guess.

Jackie

[ ] Re: IV Antibiotics

just a thought.. did u say ur on biaxin and zithromax at the same

time? cuz they are very similar antibiotcs. it would be like being

on penicillin and amoxicillin at the same time. if so u may wish to

check with ur md that this is intentional and not a mistake etc...

have others continued their orals when they started iv antibiotics?

cfsguy

>

> Jacqui,

> For the last 12 weeks I've taken 2 grams of Rochephin. My LLMD

also has me taking orals in addition to the IV----Biaxin M-F (500

mgs x 2) and Tinamed every other week. Along with Zithromax M-F. >

> Chris

>

[Guest guest]

Whitney

I have had two IV treatments with Rocephin (Ceftriaxone Sodium) for 4

weeks each about a year apart. Dosage in both cases was 2 grams a day.

And yes, they do use a PICC line. The first one was only a mid line (it

only went halfway up the upper arm). A somewhat painful insertion. The

second one, a full PICC right above the heat was easy as they used a

sedative and I watched the fluoroscope as it was positioned.

My wife helped with the daily doses but with the right equipment, you

can do it yourself.

Just a side note; the above likely helped suppress, if not eliminate the

Lyme. However, I just learned that I likely have previously undiagnosed

Bartonella. This was after seeing three so-called infectious disease

specialists. I finally got to see a REAL LLMD today and am optimistic

that I will improve on my neurological symptoms.

Hope this rambling was of some help.

W

Baltimore

Whitney Koski wrote:

>I have not posted in a while. Waiting for bloodwork that the Infectious

>Disease doc here in Memphis ordered. I am supposed to get that today or

>tomorrow. I am not hopeful that any of those results are going to

>be " positive " for Lyme. However, he did tell me that if I wanted to be

>treated for Lyme (even with negative results), that he would do it for

>me. He recommended IV Rocephin. He told me that they would show me how

>to do it at home. Do they usually just insert a PICC line for that or

>is it some other sort of line? How long do you usually need IV Rocephin

>and at what dosage?

>

>Thanks,

>Whitney

>

>

>

[Guest guest]

I imagine in this group many people would have tried this as many

people appear to have had lyme for some time, with many again not being

diagnosed in the early stages and it seems for the majority it will

become chronic if untreated for 6months or so. Buhner seems to suggest

that for most folks in this predicament abx are usually necessary

although herbs will help and may even be the the sole answer for a

few. I sense from the book that Buhner would recommend abx for someone

with active neuro-borreolosis which has become chronic according to my

latest blood test as it's not clear to what extent 2 months worth of

the 3 or 5 protocol herbs will prove sufficient to get into the CNS

strongly enough. Of course it's early days to know if this is right or

not and there are no studies on the protocol as yet.

So I am about to start a 3month course of rocephin in line with

burrascano's guidelines 4g 4 days a week and was wondering if others

have found taking the core protocol at the same time as iv abx helpful,

any concerns in doing so (i will stop the cats claw due to the liver

enzymes issue with abx), etc. I was hoping the protocol may prevent the

need for iv abx(8mths of oral abx got me from 40-65% then plateaued the

last 5mths) but after 2mths (almost full dose now)am yet to notice any

tangible effect and really can't wait any longer to try and get a semi-

normal life again.

thanks

jaco

[Guest guest]

jaco,

You're right that B. says one can take antibiotics along with herbs.

[i don't remember him saying " most " will need antibiotics...but no

matter.]

My own opinion, based on my research, differs:

Antibiotics destroy your immune system. Why? They are like a broad

herbicide which may kill weeds, and will also kill everything that it

touches - growing things, worms. And which also has bad effects on the

individual and the environment, which are not always obvious at the

outset.

It seems obvious to me that people who take an assortment of abx over

years and over decades must have no immune system left at all, and

that is why they suffer from one illness after the other.

Herbal abx build up the immune system. So in addition to ridding the

body of Lyme (if successful) they also leave the person healthier than

they were to begin with.

I I had taken abx for years and I still had Lyme I would stop abx and

see if B's protocol could build up my body.

I do not want to get into an argument re abx. I am aware I am in the

minority opinion. Everybody looks at the evidence, as I'm sure you

have, and makes the decision they think is best for them.

Just want to express my opinion.

Wishing you success in your treatment,

ellen

>

[Guest guest]

hi ellen

deciding what to do is a minefield of course, sense I get from buhner is what

you should do depends on a number of factors such as length and severity of

illness, what effect abx have had, tolerance issues, etc. I imagine if abx

don't work for me i will go back to buhner. buhner claims abx plus herbs has a

95% success rate so still might be best to combine although you won't know what

has worked in terms of symptoms.

I intend to stop herbs for a few months and try abx mainly because I have a

reasonable sense of where my infection is at with the blood results and many

people have been helped by iv at this stage. I live on my own and can't rely on

others to go and buy food, etc so need to try and find quick solutions, if I had

more support I sense I would try other more experimental approaches for longer .

thanks for your best wishes, I'll let the forum know what happens

jaco

[ ] Re: iv antibiotics

jaco,

You're right that B. says one can take antibiotics along with herbs.

[i don't remember him saying " most " will need antibiotics...but no

matter.]

My own opinion, based on my research, differs:

Antibiotics destroy your immune system. Why? They are like a broad

herbicide which may kill weeds, and will also kill everything that it

touches - growing things, worms. And which also has bad effects on the

individual and the environment, which are not always obvious at the

outset.

It seems obvious to me that people who take an assortment of abx over

years and over decades must have no immune system left at all, and

that is why they suffer from one illness after the other.

[Guest guest]

From what I've learned and read on these forums everybody's herx is

different. And some people don't ever herx at all.

Here's my own herx experiences:

The first time I started IV Rocephin I hadn't been treated at all for

lyme and I'd had it at least a year. So my herx was really bad. My

main lyme symptoms were dizziness, chills, brain fog, and the tendency

to pass out. When I started the IV those symptoms got worse, plus I got

extreme leg pains, so bad that I couldn't walk and could barely roll

over in bed. The herx lasted for about a week and then I started feeling

gradually a lot better. After the 28 days most of my symptoms were gone.

It seems like all of my herxes have lasted about a week.

Don

bridget wrote:

> So I have posted a couple questions about iv antibiotics, but am going to be

getting the PICC line done in a week or two, and was just wondering if I could

hear from some people about what kind of herxes I am going to have, I have had

heart issues from all of this already, I am just wondering if I am going to

possibly have seizures, or just really bad herxes like I am on oral. Any input

would be great!

> Bridget

>

>

>

> -

>