LymeNet Flash: Would You Do IV if You Were Me?

This is topic Would You Do IV if You Were Me? in forum Medical Questions at LymeNet Flash.

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Posted by Biting Back (Member # 6018) on :

I'm at a crossroads and I need your input if you have time. My LLMD prescribed an IV but said I didn't have to do it if I didn't want to. I contracted lyme 21 years ago and hadn't taken any antibiotics in that timeframe. I had IV rocephin for 10 days while in the hospital in December. It definitely wasn't a picnic for the first 6-7 days, but by day eight I was feeling better than I ever imagined I could (on and off). The change in my appearance and the complete disappearance of the bell's palsy was equally astounding. Unfortunately, symptoms and the palsy returned a few days after the IV was pulled.

I'm currently taking zith and I'm still doing better than I imagined I would at this stage of the game. The LD has been left untreated for so long I assumed I'd always have severe symptoms, but that doesn't seem to be the case (big sigh of relief and thanks to the Almighty).

If you were me . . . would you do IV or stick with orals? Could IV raise a red flag with our insurance company and possibly end up in denial at a later date? I have a little boy and a husband with lyme as well, so I must look at the big picture.

When you can, would you mind posting your experiences and opinions?

Thank you in advance. I would be lost without you.

Posted by treepatrol (Member # 4117) on :

I stuck with orals.

Posted by Foggy (Member # 1584) on :

3 months of IV didn't do it for me so I switched back to orals. It was something I had to try, knowing it was 50:50. Reactions are clearly idiosyncratic.

Posted by bpeck (Member # 3235) on :

I was 27 years untreated Lyme - many (mis) dx of autoimmune diseases. I had alot of eye issues, and did not want a large die off in my head right off the bat.

I only used orals-
any they were very sucessfull... I always opt for the least invasive route first (plus I figured I really didn't want to by pass the intestinal
tract.).

Barb

Posted by liz28 on :

The oral abx are much better now than they used to be, if you use them in combination, so rocephin is no longer the big gun it used to be. Also, some of the orals address co-infections, but I don't think rocephin is for anything but Lyme.

My current Lyme abx is: ketek, omnicef (same drug family as rocephin).

I also take mepron and artemisinin for babs, and septra for bart.

Posted by Beverly (Member # 1271) on :

Hi Biting Back,

I have only been on oral abx, and so far it's working for me, I am also treating for the co-infection babesia. I have gotten the most help while treating for babs.

Good luck to you.

Posted by arg82 (Member # 161) on :

I don't think that any of us can really tell you what to do because treatment success varies so much from person to person.

If you haven't tried orals first, I'd recommend doing that to see if you can get any improvement without IVs. But, IVs may be helpful for you. For me, IVs gave me the best remission I've had in my seven years of treatment. Unfortunately, I didn't stay on them long enough and not with a good combination so I relapsed about five months after stopping them and also lost my gallbladder because of it.

IVs aren't a walk in the park but they're not as difficult to deal with as they used to be (I assume). My advice would be to see if orals can help you (go on a good combination), get tested for co-infections if you haven't already and get treated for any co-infections that come up, and keep IVs as an option if you need them.

--Annie

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Posted by beachcomber (Member # 5320) on :

IV Rocephin was the turning point for me. It gave me a semblance of a life back. My GI tract had suffered greatly from different orals. I would still be on IV if it were not for a slight heart problem and a very sensitive superior vena cava (vein to heart).

I am doing orals an IM injections now and having a heck of a time with my intestines. I'd take IV over orals any day. But, that's just me.

Posted by Lymetoo (Member # 743) on :

I hear you on the insurance issue. I would have done IV long ago if it weren't for my fear of losing my insurance. Not that I would lose it, but that they might not pay for future Lyme treatment.

I've had this forever and suspect my husband has it too...[how could he not?] so I wouldn't want to lose the ins.

IF I were to do IV, I would go for claforan. I think you're less likely to relapse on it. All I hear about on here is how everyone relapses the minute they go off Rocephin.

I agree with Beverly that you need to be sure you don't have babesia. Forget the testing, go straight to the treatment phase. That may be all you'd need and then wouldn't have to go the IV route. Just my thoughts. [guess what? I'm not a dr!! ]

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Lymetutu

Posted by cootiegirl (Member # 3216) on :

Well the best I can offer you is my experience with treatment because I don't know how your lyme is effecting you and what your body can tolerate.

I went undiagnosed for probably 30 years as the result of a tick attachment when I was a kid. My llmd thinks the lyme probably laid dormant in my system for years before rearing its ugly head.

I have been in treatment for 3 1/2 years and have been treated for babesia and bartonella as well as lyme. All treatment has been oral meds.

When I first started out, I read a lot here and saw that many people were treated right from the get go with IV. I asked my lyme doc about IV therapy and it was his opinion that there are many oral meds that have as much effectiveness if not more, than some of the IV meds.

IV has its own set of complications... there is the concern of keeping the site clean, infections, blockages, etc. Then the more 'practical' matter of insurance covering the treatment. If you are a seronegative person, the insurance companies may cover it with a letter from your physician, but probably only for 4 weeks. So the process could be very costly to a person if they can't get the insurance company to support the treatment.

Over the years I have had the good fortune of working with two lyme docs and have been treated exclusively with orals. Unfortunately this disease just doesn't want to give up residence in me, so my oral options are running out. I'm currently on a combo that is showing success, but unfortunately I have plateaued in the past, so for now we just continue on course and see what happens.

Personally, I am a huge chicken sh$% when it comes to the whole IV concept, but if it does come down to that, then hook me up. Ya gotta do what ya gotta do.....

So I guess what it comes down to is if you haven't tried orals and you want to give them a try, then I say go for it. If you have had success with IV in the past, then that too could be a very good option for you....there is no right or wrong choice between orals or IVs to treat this disease, and it really requires alot of trial and error to see what is going to work for your particular variation of the illness.

Best of luck in making your decison.....
cootiegirl

Posted by Biting Back (Member # 6018) on :

You guys are awesome. I really appreciate hearing all of your experiences and opinions. I think I'll stay on orals for now since I'm making such progress. IV is always an option if I stop progressing or heaven forbid, relapse. Thanks again!

Posted by Meemer (Member # 6620) on :

quote:
Originally posted by beachcomber:
IV Rocephin was the turning point for me. It gave me a semblance of a life back. My GI tract had suffered greatly from different orals. I would still be on IV if it were not for a slight heart problem and a very sensitive superior vena cava (vein to heart).
I am doing orals an IM injections now and having a heck of a time with my intestines. I'd take IV over orals any day. But, that's just me.
Bc