posted
A Dr stated this lately and I'am wondering what-everyone thinks. IV should be used as a last resort option, not a first resort. If a dr is looking at lyme as being chronic then he probably recognizes that lyme has three forms. If you put a very ill patient right on IV, your setting them up to get really sick and activating alot of LYME, his idea was to a sick patient to put them on small doses of orals to make the lyme as less active as possible and to still kill off the disease, and then to slowly progress up. Just curious, Brian
Posts: 217 | From Everywhere | Registered: Nov 2006
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I would tend to agree with the notion of using IV last simply because it does come with significant risks, such as line infection and blood clotting issues...
I've run orals for sometime now and have been flirting with the idea of IV but running IV does tend to be inconvenient if you are trying to stay active through exercise, work, etc.
Plus there is no guarantee that you will be any better with IV even though for some it can be the magic bullet that finally gets them on the right track. For others, it doesn't always make much difference.
I would suggest exhausting all of your options. Experiment with a broad range of good orals. Run viral/parasitic testing to rule out other conditions.
If lyme seems to still be the major player, then I think IV would be worth a shot as long as you are comfortable with the risks and drawbacks...
I'm not quite ready for it myself but may be within about 6 months or so.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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WildCondor
Unregistered
posted
IV is great stuff, and it makes more sense to hit the Lyme as hard as you can so you are in control of it, not the other way around. A very ill patient needs very strong medicine...that's common sense folks.
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posted
A very ill patient needs strong medicine yes thats ignorance, but im not asking that. im asking why would you give someone who is very sick a crapload of IV antibiotics when their body can prolly just handle a minimal dose. I'll just end this here and say it looks like a conservative approach VS. a liberal approach
I have seen a dr that blast IV off on everyone, not mattering how sick you are and it seemed to have mixed results. I have seen a dr that does lose dose of abx to set people up for bigger things (seemed to get better results).
You were fortante to see a very well rounded dr, most people aren't that fortunate, Im glad your well, very glad, you helped me figure out what was wrong with me , but in reality you would tend to run biased on this subject.
Posts: 217 | From Everywhere | Registered: Nov 2006
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WildCondor
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posted
You decide what is best for you! We all have bias, we are human beings. If you read my story, fortunate is what I was, in the end, because I was determined to get well. It was my determination that got me through this, not "fortune". I post here to help others get well, and live happy lives, end of story. It is your destiny. Good luck.
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posted
It sounds like the Dr is trying to limit the herx response. I guess there is something to be said for that. But the herx gets less severe as tx goes on.
But if an infection is severe, why hit it with a less effective treatment? Orals are probably NOT going to be enough.
Also, experience has shown that long term, late stage disseminated lyme is best treated with IV. Hit it hard with the best.
Or one could try a year or two or three of orals. But does one really want to stretch the treatment out that much longer?
I'm on orals because even though I've certainly have had lyme for 26 years, with several reinfections, it never got that bad for me.
However, my friend has had lyme for 12 years, but she's got it severely and all over. It's in her brain, she has seizures, etc. She started on IV. She has not had severe herxes.
The same LLMD treats both of us.
James
Posts: 872 | From New York City | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
The distinction should be made between controlled environment--like a hospital with a more closely monitored line, etc.-- to the home environment where one may be pushing themselves with work, exercise, etc. while the line is in place.
Sure, severe cases warrant IV upfront but this is usually facilitated through a hospital or other health agency.
For longterm IV use in people caring for their own line at home, it can be more complicated. Unless you are spending most of the time on the sofa, you will be sweating, moving, maybe working and the risks for line complications would be higher.
Since I work in a public building, I would essentially be walking around with an open wound on my arm and would be exposed to a number of pathogens daily.
It has less to do with an eagerness to get well and more to do with the big picture...being reckless will not necessarily help me get better sooner...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I agree with everyone in some sort of ways. Lymeorsomething I agree.
chronic lyme essential means it never goes away right? one can hope for remission, yet others who say they have chronic lyme say i want it all gone.
this is just my thought not including co-infections, other problems (not that any one cares)
600 mgs of oral doxycocline has been proved to work pretty effectively even for late stages, if you disagree, read, study or talk to a large group of people, or drs.
most people i know that have been on IV, if not everyone say this, "i felt better on it, i feel so much worse off it." why? because the infection wasnt killed? or because you hit it so hard, and since its in a chronic form you let it spread so much farther, because your using strong IV abx? for some reason you have to stop, maybe you cant afford it anymore, to taxing on the body, or its not doing anything to help you. With this illness the idea is to improve not regress right? I just feel so bad for people that get on IV thinking its going to cure them, and they get this big let down. Dont get me wrong I know alot get well from it or atleast improve, but there was a reason a very well respected lyme disease suffer choose not to do IV, Scott F ring a bell? Im not trying to stir anything up. I just want everyone to feel well!!!
Posts: 217 | From Everywhere | Registered: Nov 2006
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posted
Wildcondor i read your story over 3 years ago, it told me what was wrong with me. thankful for that, ive talked to you a few times. Your story gimics mine from the purple feet even to silly same cd57 readings, this is why I often look for your posts. I dont really run-into many people (in real life) that have the problems i have this is why i turn to lymenet, its a great place for support and yes if yer determined to get well I believe one will eventually get well!
Posts: 217 | From Everywhere | Registered: Nov 2006
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I got a picc in yesterday. Have been on orals and bicillin shots 14 mos., no change. I put off for months doing IV, but enough is enough. I have home health care right now but eventually that will run out. I fully plan to know exactly what I'm doing by then.
I am on medical leave right now, but have to go back to work since after 28 days, I'll be paying out of pocket for all this. I will keep it properly covered to prevent the unwanted from entering. You may be taking chances with a picc, but you are also taking chances with orals or anything you do. Sometimes you have to do what you have to do.
Wild Condor....hope I remember to read your story when I can, I'm very interested to to see your road to recovery. I actually think I once read it, but all that info is completely lost.
Also, everyone can compare different treatments all they want, but what always stands is....no two ppl are alike, and what is good for one may not be good for another.
Best to you all, and Wild Condor, thanks for sticking around!
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
This has been very helpful to me regarding whether or not to go on IV abx.
I'm back on orals now (Ceftin) but doxy worked pretty well for me so I'm not sure why my dr. changed to Ceftin.
Anyway, if I do IV I think I will take a leave from work as well. I am very active with job and 3 kids so my fear is that I would expose myself to problems if I didn't find a way to stay home on the couch.
Ugh...just the thought of that makes me not want to do it. I stay busy and can't imagine being homebound which is what seems to be the best course if you are going to have a picc line.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
That's the dilemma TX especially when you're trying to keep some semblance of normalcy. I wouldn't like the mental burden of staying home either as I've been doing OK in keeping my normal work schedule despite fatigue.
It's definitely a tough decision but IV may ultimately be the right option when symptoms refuse to go away...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I think some of it's patient's choice, too. Many prefer to stay on the orals-slow and steady wins the race, too.
I was bombarded with high doses of multiple oral antibiotics for about a year, then put on IV Rocephin after a SPECT SCAN was done.
I was actually out and about more with the PICC line. But when I plateaued on the IV after eith months I went back to orals for a couple more months and really made progress.
I also think insurance coverage is a factor.
Doctors prefer to use the less invasive approach first, then go to PICC if necessary because the risks are so much greater.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Being on IV doesn't mean you are neccesarily going to be homebound! I sure don't plan to be.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
i was put on IV when my cardio/neruo kept getting worse on orals. i agreed with the choice
having western med. mind made sense to me to hit active infection with the heavy guns. doxy was not doing enough ---- for me.
each case is its own ....i also was tx. with immunosuppressives for over 8yrs for "lupus" then dr's all though had MS...then thank you Lord for my neuro new to our great state via NY who tested for lyme before going back to drawing board.
so- my situation was hx of immunosuppresants with active infection. my heart and brain are going to mush....yup. i think bringing out IV was only way.
still on rocechin - have been since feb. i had port put in since dr's thought i would need long term IV...now i get weekends free
no one case is the same, top this with no know sure fire tx...and LLMD's count on previous pt's to help guide YOUR tx now. live and learn.
what we need is better research, better testing, etc.
until then- as far as tx- make informed choices. and if asking for help suggest making sure let folks know if any underlying hx as well? just my thoughts
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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, but in reality you would tend to run biased on this subject.
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