almost 4 months on Orals, now moving to PICC

Well, it's been almost 4 months on orals (both Flagyl and Azithromycin) and now I'm moving to IV.  Going to continue to use the orals, and adding Cefixime administered via IV daily.   Thus far my symptoms haven't really gotten any better, but at least I didn't get worse.  I may be better than shortly after I started the Orals, but that was the lowest point for me.  

I started the Cefixime via oral 10 days ago and will be switching to IV in about a week.  The oral trial is to see if my body has poor reaction to the medication.  Thus far I didn't notice any allergic reaction.  The only thing new was that my left foot hurt quite a bit and I could hardly put any pressure on it for the first 30 min in the morning.  I could also see swelling on the top of the foot, where the pain was the most severe.

My Dr. said that I will continue to take the orals while I'm taking the IV.  He said that he never had one person relapse who did both oral and IV.  But has had some people relapse that didn't do both.  In any case he said long term oral is the only way you can truly wipe out the bacterial 100%.  IV usually just helps speed up the process.

I'm being set up with home care where the nurse comes by daily to administer the IV.  Has anybody had any experience with this?  Is their anything I should be wary of????  The first dose is done at the hospital.  they want to make sure that I don't have an adverse reaction to the med.

I never expected this to be so difficult.  I can't wait to get back to some normalcy so that I can get back at least some of my life.

Still hanging in there.....

[wonko]

Glad to hear that you are still hanging in there and that your doctor has a plan to get your treatment moving faster.

I've done orals the whole time, more than 1.5 years and counting.  It has been slow, and at times I questioned if I would have benefited from IV, but given that I have actually improved, and continue to do so, I figure I'd best not complain and stay the course.

For me, bits of normalcy appeared here and there fleetingly before any solid, lasting improvement.  But those "teases" were reassuring that I didn't have tons of permanent damage and that the "real me" was in fact still buried under the bugs.  It has taken a long time to appreciate the improvement and to learn and live with the "it's a marathon, not a sprint" aspect of treatment.

I don't have much in the way of advice other than to watch out for line infections, I've read that they can be nasty.  Ask that home care nurse all the questions you have, hopefully they will be able to let you know of any red flags...

Good luck and hang tough!

[Buddy88]

Thanks Wonko.

M doctor said that he has treated people with just orals, but they usually weren't in that bad a shape initially and it just takes longer to recover.  The IV supposedly speeds up the process, although you can also have more severe herx reactions.

I looked on the net, and the IV meds he is putting me on is different than what is normally given.  Perhaps because about 10% of the people have a bad reaction to the meds???  I did ok on the oral version of the meds, so I probably should be ok on the IV version.

Hope your feeling better today.,....

[Buddy88]

Well, I had my PICC line put in, and now getting 2 grams of Ceftriaxone per day plus the oral meds.  I feel like crap.... I'm starting to wonder if this is ever going to get better..... 4 1/2 months on orals, and 1 1/2 weeks on IV.... I'm going to get at least 2 months of IV....

In your experiences, do most people start to at least feel better within a few weeks of IV treatment????  I know that just orals can take a long time to get results when you have Nuro Symptoms.... But how quick does the IV start to work????

[JackieCalifornia]

Sorry to hear you're having a rough time.  I can't speak to side effects of IV treatment, since my LLMD doesn't use it (at least not on me.)

You might be Herxing, hence the feeling lousy.  You could check in with the MD's office and let them know how you're feeling and ask how long it will last.  That way if there's something to be done, it can be.

Hang in there!  Let us know how you do.

[ruhaujan]

Buddy I naw getting  the  Ceftriaxone + plaquenil it is not fun I herx lot the IV take times I have lot of neuro symptoms  I feel like crap  but my LLMD  told my it will take  2 month tu get  results   you have plaq or flagyl  with IV   I had tu fly from Canada to Europe get treatment  hang in there it will get bethr JANA

[Buddy88]

Hi JANA....  I'm almost on 2 weeks of IV now.  I haqve been taking Flagyl and Azthromycin oraly for over 4 months now..... Thus far i haven't really seen much improvment, and since IV, feeling even worse....

I was told that I will be on IV for min of 2 months.... He ordered 60 doses and will monitor my progress....

I was getting discouraged by not really seeing much results from the 4 months of orals.... Hopefully i will see some improvments soon with the IV....

You all you guys out there are doing well!!!

[ruhaujan]

Buddy   on MDJunction.com  LymeDisease Suport Group   Success story that help my  if I fell like crap  peaple du get bethr  i du puls IV 4 days on 3 of  I am realy  not well I have LYME for long time bad neuro symptoms  ar you from Canada or USA   JANA