Lyme Disease Support Group

The tests came back positive and I was started on 500 mg Ceftin 2x/day for 21 days.

Since diagnosis, my symptoms have included sharp headaches, joint pain, jaw pain, back and neck pain, acid reflux, and loud noise induced vertigo.

The symptoms seem to be getting progressively worse and the infectious disease doc I saw told be they may persist for weeks to months after I finish the antibiotics, but I am skeptical.

How do I know the antibiotics were effective?

I am breastfeeding my daughter (the reason I was given Ceftin and not doxycycline) and I also worry if I could pass the infection to her.

My guts tell me to keep nursing because as long as I am on antibiotics, she will be getting a dose as well as my antibodies through the milk. Most say she should quit just because of her age.

I was told to come back to infectious disease if I develop meningitis or arthritis. Something just doesn't seem right.

I wanted to see if anyone else has any experience that I could learn from. Most information I find is on late stage Lyme or early stage Lyme that was treated with doxycycline.

What should I watch for that would indicate that the antibiotics were not effective? Should I worry for my daughter? I appreciate any and all help! Thank you.

Added: I am 25, my daughter is 3 yrs and I live in MD. I have been told by several to find a LLMD, but I wasn't sure if it is necessary to shell out that much money since we caught it early? Is it likely or just possible that the 21 days is insufficient?

Post edited by: jnuss86, at: 12/15/2011 03:17 PM

Lyme is very rarely an easy or short fix. And any Dr that follows IDSA standard, is incorrect in their treatment of Lyme - stating that symptoms might persist for weeks or months afterwards is a BIG CLUE that your Infectious Disease DR doesnt know what theyre doing with Lyme!

Symptoms should be GONE for two months before treatment is stopped. Anything short of that hugely increases your chances of relapsing and allowing the bacteria to regrow and take over again.

If you don't believe you were infected while pregnant, stopping breastfeeding might be the best way to minimize your daughter's risk. Then again, she may already have contracted it.

If you think there is a risk you might have been infected while pregnant, it might be worth testing your daughter.

I was just diagnosed in July. Realized I've had this for many years ... including while I was pregnant. My 10 year old son was just diagnosed as well.

This is not an easy disease to get rid of.

If my daughter has my antibodies via breastmilk consumption, would she test positive regardless of whether or not she is infected? Should I have her tested? I was told that she shouldn't be treated even if she does test positive unless she has symptoms...?

All of this information is overwhelming! The coinfections seem to have a lot of the same symptoms but different treatments.

Is the only way to know for sure if you have the other infections by paying for the tests? This is quickly becoming a very expensive illness and I've had it less than a month!

The easiest way to see if you have them seems to be to treat for it and see if you get a reaction out of the treatment.

Some people never have enough antibody to make a positive test result - if you did actually get Lyme only recently, she likely wouldnt have had the bacteria long enough to have gotten a good antibody response to it and wouldnt test for it regardless.

It is definitely something to keep in mind if she ever starts having health issues. The longer someone has Lyme, the less likely it seems for them to test strongly positive for it. Many go undiagnosed and misdiagnosed for years.

Read some of the personal stories here, you'll see the same similarities over and over - similar symptoms, similar misdiagnosis, time until diagnosis, etc.

There is also alot of research showing that symptoms to Lyme dont show until a person has a large amount of bacteria built up - so you might have had it longer than you think before you showed a bullseye and symptoms.

Personally, Ive probably had this for a minimum of 5 years to 10 years or so - with minimal symptoms I brushed off. Symptoms that I had for years, abnormal ones for a teen that I just brushed off - but with treatment on antibiotics have disappeared?? Mildly arthritic knees? Yes, thats normal for a teen LOL! [sarcasm!] But - its also now gone after 4 months on antibiotics. I didnt get massivley symptomatic until just this past Spring, and the first 5 Drs I saw try to feed me BS line anfter BS line. You dont have Lyme, you were treated, its gone. You might have Lupus (negative tested). Or you had a heart attack [no family history, stated to a 23 year old powerlifting female who watches her diet like a hawk??!]

All of my Lyme tests came back positive... but more minimal than some.

My symptoms have gotten more and more minimal the longer Ive been on antibiotics. This gives me hope and has thoroughly convinced me that atleast for my case - long term antibiotics are definitely a good thing.

Both of you need to see someone who specializes in Lyme. If you believe this IS a recent infection, then the sooner you get to an LLMD the better.