How do you know when it is time for IV meds?

[cobbiemommy]

How the heck do you know when it is time to ask about IV medications? I feel like we are there. We have taken almost all of the possible orals for Lyme and we are still having cognitive and processing issues, also mood-grumpy.

 

We will see Dr. J and Dr. B on Monday. How does IV meds work when you live in another state from the prescribing doctor?

 

Cobbie

[Hopeny]

I don't have any answers for you but I wanted to offer moral support. I have the same questions as you. Non lyme literate ID doctor stories that I have heard seem to always go straight to 4 weeks of IV abx. It seems this does work at times. I feel its worth a try. .

When I told Dr J (seeing him for 3 YO) about older DD with chronic Lyme his first question was has she done IV. Please post and good luck, I know this is a very hard decision.

[mdmom]

It was not a hard decision for us - my children both went on IV meds after 1 year of failed treatment (for Bartonella, Babesia, Strep, Mycoplasma) with orals.

 

Both of my children went undiagnosed for many years, so I had prepared myself that their treatment would be slow and involved.

 

They have both been on IV meds for over 1 year now. They both have central IV llines and get daily infusions. PM me if you'd like specifics.

[cobbiemommy]

I just want to say that DS has improved on orals, but we are still seeing cognitive problems. I didn't want anyone to think that there had been no improvement in all this time. He is able to go to school all day, does not have rages all the time, his bartonella rash is iffy; it flares from time to time. CoQ10 and acetyl carnitine have helped with the fatigue in a huge way.

 

MDmom, what gains have you seen in the last year for your children?

[Dedee]

I would love to know this also. We are close to ending our first year of oral treatment. We have had some improvement but not anywhere near where we should be. The only positive is that the Myco p titers have come down to the normal range in IgM but not for IgG. My daughter is still very symptomatic neurologically so I don't think we are making much progress with the lyme or bartonella. She also still has lots of physical symptoms that affect her at school and in sports. I'm sure we will wait a few more months before bringing it up but I too wonder when the IV thing comes into play.

 

Dedee