Lyme and Ceftin

[cobygurl]

Hi,

 

Unfortunately after taking the IGenex Lyme test DS 5 is positive for Lyme (bands 41, 34, 39 and 94.)

 

I am feeling so overwhelmed and sad right now.

 

He has been doing much better with some minor ticcing after taking Acyclovir for Coxsackie but the day to day grind of being afraid that he will get sick etc...is starting to get to me and now he apparently has LYME on top of PANS.

 

Has anyone had their children on Ceftin for Lyme?

 

Most likely DS has had it since he was 2 and we found a tic on his head - at the time didn't think anything of it.

 

He seems to be doing so much better now, and the doc says I can wait a little bit before treating with antibiotics but he needs to be treated. I have heard sometimes that once you start treating, things just get worse.

 

Apparently he will need to be on it for 4-6 weeks.

 

Any input would be appreciated.

 

Thank you!

Edited October 1, 2013 by cobygurl

[msimon3]

We have not used Ceftin (Cefuroxime) personally, but it has been shown to be an effective drug against spirochete forms of Borrelia. A key consideration, especially if the infection went untreated for three years, is that the Borrelia is also present in cyst form and L-form which is fairly common. Ceftin alone will only attack the spirochete form, and any living Borrelia can revert from cyst form back to spirochete form and cause new symptoms post treatment.

 

A good LLMD will have a treatment protocol that recognizes the multiple forms of Borrelia and provides a strategy for defeating them. I would be wary of expecting success from a single treatment cycle of 4-6 weeks with one antibiotic, as it seems to run contrary to relatively modern approaches followed by LLMDs affiliated with ILADS.

 

Hopefully the 4-6 weeks of Ceftin will clear infections and symptoms, but if not I would seek the guidance of a doctor who can provide a comprehensive treatment protocol for late-stage Lyme disease.

[rowingmom]

We have not used ceftin either. And msimon3 is right, if he has lyme (has he been properly tested for all coinfections?) your son will need more than monotherapy. You may be able to help symptoms for a while if the spirochete's have encysted, but eventually they will come out of hiding. A protocol which addresses all 3 forms is needed.

 

I know exactly how you feel, that horrible sinking feeling...I remember crying for a week, But you will pick yourself up because you are a Mom! and you will wrap your head around this as you did with PANS, and you will figure it out. And you might end up helping others in your family as well.

 

Actually, it was our daughter's lyme/coinfection that caused her PANS reactions. Lyme is notorious for causing autoimmune responses (DD had positive ANA titers), and was certainly responsible, in part anyway, for our daughter's symptoms.

[Dedee]

I am sorry that you have gotten this horrible diagnosis. It is indeed a difficult road to follow. However, you now know what you are dealing with and armed with knowledge for the battle. In some ways you are very lucky. You have a positive lyme test along with difinitive symptoms. I'm a little concerned about your physician's plan for lyme treatment. Do some reading on lyme treatment as you have on PANDAS. Most literature will tell you that it takes combo antibiotics for months to possibly years to truly treat lyme. The other thing to consider is co-infections. Most who are infected with lyme also carry co-infections. They may not necessarily test positive, because as you know, these test frequently have a false negative. I think the best thing you can do at this point is find a good LLMD. Few regular doctors (even PANDAS specialist), truly know how to treat lyme & co-infections. I'm sure others will chime in with some good advice. It may be helpful to go back and read some of the archives on lyme topics. Keep us posted on your progress.

 

Dedee