Short version, I had a bullseye rash Sept 2006, tested slightly positive a few weeks later and my general doc put me on 3 weeks Doxy. Fast forward to the past 6 months. I have had a myraid of symptoms, mostly neuro and very annoying. The worst was 2 panic attacks, and tailbone pain that sent me to the ER and of course I tested fine for everything. I finally went to a LLMD last week and am waiting on the Igenex results. The LLMD made a clinical diagnosis and is starting me next week on IV Rocephin and oral Flagyl for at least 4 weeks.
Before I went to the LLMD I was able to convince my GP that I was having a flare up of Lymes and he gave me a month of Doxy, so I took that while I waited for my appt with the LLMD - because it took me a month to get that LLMD appt. Well, now I feel like a new person after my month of Doxy. I am scared to death that the Rocephin is going to make me sick, feel bad, bring out new symptoms now that I am feeling so much better. I know I will get a yeast infection and I don't want that for a month either. I don't know what to do. Should I put off starting IV meds and wait until the Igenex comes back in? The fact that I feel so much better after a month of Doxy makes me positive I have Lymes. Is it possible to start the Rocephin and stop it, if it makes me feel worse? Or will they make me keep taking it? I just don't know what to do! I see so many stories online about it not helping so I wonder why I should put myself through this.
Any help, suggestions, advice or stories welcomed and MUCH appreciated!
Posted by SL10 (Member # 12953) on :
My husband went through a 28 day course of IV Rocephin and improved dramatically on it - without any herx reactions. Unfortunately, this was administered by and ID Doc who did not follow up with any oral abx.
12 months later he did 3 months on IV Rocephin - (2g/twice a day this time) and again, improved quite well with no adverse or herx reactions.
Everyone is different - you just have to remember its your body and your doc can't force you to continue a treatment that you can't tolerate.
There are various other IV abx that are used - doxy, claforan, mino - so if it turns out you can't tolerate Rocephin maybe your doc can switch you to something else.
Also - taking acidopholus, eating lots of yogurt or even taking prescription diflucan can all ward off a yeast infection.
Posted by KS (Member # 12549) on :
If doxy has made you feel better, why do IV?? I would talk to your LLMD about doing about 400mg of doxy/day for a couple of months then....
Posted by designt1 (Member # 16568) on :
lmz1100, sent you a pm
Posted by lmz1100 (Member # 15487) on :
KS - I kind of agree. Personally, I would rather up my Doxy for another month or two and see what happens. But, my doc is the professional and I don't want to question his judgement - especially since it took me so long to get in to see him!
Posted by feelfit (Member # 12770) on :
Hi!
I agree with KS. If Doxy has you feeling better, the prudent thing to do would be to continue doxy at 300-600 mg daily for several months.
I would ask your doctor if he would agree to let you do this.
IV abx comes with it's own set of risks. You have to weigh the risk vs benefit ratio. If you are not severely debilitated, able to function fairly well on a day to day basis, I would definately stick with orals......
especailly since you have had marked improvement on them.
feelfit
Posted by sweet pea (Member # 6495) on :
I agree with continuing with the doxy, just make sure it's at least 400 mg/day.
Your doctor can't make you do anything, and if you tell him you'd like to consider IV in the future, but are uncomfortable with it at this point, he should understand.
Posted by lmz1100 (Member # 15487) on :
Well, you'll all think I am nuts...but i am going ahead with the IV txt and oral Flagyl. My husband and I called the nurse this morning to discuss options. While Doxy has been helpful at getting rid of symptoms, it doesn't kill Lyme bacteria for good. (who knows if anything really does anyway) It seems the IV meds break the brain or blood barrier, I forget which. More than likely the symptoms will return now that Doxy txt has ended. The IV doesn't seem as scary to me now that I have more info. If I don't fare well, I will deal with it then. Wish me luck!
Posted by MusicMan (Member # 11966) on :
Hi there
Well ya know? The whole IV thing is not as great as it was once thought to be and if I were you I'd pass on that for now.
If you have to pay for it? I'd pass on it for sure!
Umm, actually I have passed on it a few times now, I'm scared of complications so I won't do it but that would change if they found a drug that really worked via IV, then I'd risk it all.
Steve
Posted by lmz1100 (Member # 15487) on :
Hey Steve!
Shockingly, my insurance is covering IV txt at 100%. I am going to give it a whirl and see what happens. I will let you all know.
Posted by Nebula2005 (Member # 8244) on :
Dear LMZ
I sent you a PM, but I wanted to add--
I hesitate to say you're lucky, but you are, to have been diagnosed so early in the disease. This makes all the difference, I think, speaking as someone who was sick for 15 years before figuring out what was making me so sick.
You may be able to contain the infection with doxy. Some people have. You may be able to really get better by using IV Rocephin for a few weeks. If not, there are other drugs to try. I don't think Dr. C will make you use anything you have serious objections to. He bases treatment on how you respond or don't respond and is quick to try something that may work better.
It's only natural to be apprehensive but you must feel better now that you've made up your mind. Wishing you much luck.
Posted by sweet pea (Member # 6495) on :
quote:Originally posted by lmz1100: Shockingly, my insurance is covering IV txt at 100%. I am going to give it a whirl and see what happens. I will let you all know.
Be careful about that. My insurance company told me I was 100% covered. What they didn't tell me was that I was covered only after paying the full deductible in my policy. So I ended up spending $2K or $3K (can't remember what my deductible was) before they covered the IV expenses. Didn't realize this until it was too late.
Posted by pryorka (Member # 13649) on :
I wouldn't worry about doing IV. I like mine, I'd eat through it if I could. Oral medicines always upset my stomach though so IV is a nice break from that. I've had it in for almost a year and no problems so far.
Posted by lmz1100 (Member # 15487) on :
sweet pea - I'v already met my annual deductible, thanks to going to the doctors so much trying to find out what the hecks been wrong with me! thanks for the heads up though.
And to everyone, thank you SO much for your advice and wisdom...and words of encouragement. You have no idea how much that has helped me through the past few days!
Posted by Parisa (Member # 10526) on :
Since you are already going to have a line in why not do the Flagyl intravenously also? I've heard that Flagyl can be hard on the stomach so why don't you save your stomach for later on when you are off IV meds?
My husband had a great response to IV Flagyl. I hope you do too!
Posted by AP (Member # 8430) on :
Be sure you get the full story about IV antibiotics. Iwish I responded to oral meds. I surely wouldn't be killing my body with the IV stuff if I didn't have to.
I posted this in another topic, but feel it fits here too...
IVs are not an easy thing to deal with. I constantly had problems with PICC lines getting clotted, though I was constantly pushing heparin. After my 5th line in 6 months was accidentally cut by my home health nurse, I decided that having a chest port would be a better option.
I thought that I was very well informed when I made the decision, but had no idea that there could be so many complications.
Just over a year after the port was installed, I began to have intense pains in my heart. An operation was done to remove a fibrin sheath, and the doctor found that the line extended 4cm into the right atrium of my heart. Two days after they cut into my groin to remove the fibrin sheath, the doctors cut my chest open once more to replace the port.
I've had my current port since June 30th. On October 3rd, doctors cut my chest back open to stitch the port back down. It was attempting to flip over, and constantly rubbing against the scar tissue, which caused a great deal of inflammation and pain.
The night of the surgery, my incision broke open. There is no lab proof that the site or the port was infected, but there was a good deal of puss, nausea, and fevers for 3 weeks.
Last week, doctors in the ER attempted to draw blood for cultures out of the port. When they could not get blood, I was sent back to my surgeon, and once again had a fibrin sheath removed.
If you weren't counting... I had 5 PICC lines in 6 months, and have had 5 surgeries regarding my chest port since March of 2007.
It would seem to the outside eye that I don't take care of my lines, but I am a complete germaphobe, and my current nurse is way more than competent. My body often rejects peripheral IVs within 6 hours of their placement, and has proven to not stop at anything to do the same to PICCs and Ports. I just begun coumadin therapy to try and maintain the current port.
I have little to no improvement on oral meds, and veiw IV therapy as the only road to a healthy life for me. I no longer see the doctors back east, and leaving their practices was very difficult because of the help they gave me.
Deciding to continue on IV therapy is a constant struggle for me. I am currently trying to figure out whether or not medicine has done all it can, and if I shouldn't just take out the IV and try to live as normal and happy a life as I can.
It's a struggle to be this sick and this young, when I led such a healthy life before the tick bite. I often have problems that people my age don't have to worry about, and obviously envy my friends for the lives they are allowed to live. In the 4 years I've been sick, the biggest lesson I've learned is to follow your own heart. If you listen close enough, you know what's best for you. Remember, you're the only one in the world that knows exactly what's going on with you.
Good luck!!!!
Posted by sweet pea (Member # 6495) on :
quote:Originally posted by lmz1100: sweet pea - I'v already met my annual deductible, thanks to going to the doctors so much trying to find out what the hecks been wrong with me! thanks for the heads up though.
Excellent!
Posted by Parisa (Member # 10526) on :
Other side of the coin and I'm knocking on wood real hard as I type this. My husband has had his central line in for over 9 months now without a single problem. Doing IV has helped save his stomach as he just wasn't tolerating oral antibiotics very well anymore and really wasn't progressing on them.
Posted by ladycakes (Member # 12619) on :
Different people have different reactions to IV, the same as they do to orals.
Mine was awesome. I did have to have it replaced once, my first one sprung a leak. But other than that I had no issues with it, and had really significant improvement on it. I was also super lucky with my insurance, and never had to pay a dime for it.
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