ptcgirl

I was contacted by our public health department because my daughter tested positive for babesia. They just wanted to find out out if it was a true positive (in their opinion). They asked me about symptoms and her reaction to treatment. They agreed that she does have babesia from the info they collected. I hope that the CDC starts tracking some of these cases since it is not currently found in our state (according to them). It would really help if tbi had some funding for research.

I'm so, so sorry to hear that. I will keep your family in my prayers.

My dd11 developed pandas at age 7. She had a sudden onset of OCD after 2 strep infections. Those were the only strep that she ever had confirmed. After she was out of crisis mode with the initial onset she still had OCD symptoms for a year and a half. We had her t and a removed because they were a bit large and we were scared to death that she would get strep again. Immediately after removing the t and a she no longer had any OCD at all. She took no meds, no antibiotics, no SSRIs and was 100% back for 9 months. Then OCD and tics came back. Dr b and dr j think itis still pandas plus lyme with coinfections so that is what we are treating now. I wish we could have those 9 months back and IMO having the toncills out was a tremendous gift for those 9 months. Now if we can just get back there..... It is haunting at the same time as hopeful. All of this leaves me just wondering what the heck is going on with my kid. Does she REALLY have PANDAS? Can she possibly have LYME? Is this just some type of OCD that will never really go away forever? I know you know what I mean. It is the not knowing that is truly hard.

My dd11 was diagnosed with pandas in 2006 and now Lyme, Bartenella, and babesia in 2011. We are seeing dr b and dr j in ct and I do believe it is worthwhile. I just wonder which one came first, pandas or Lyme, etc? Does she really have Pandas or was it the Lyme stuff all along? The drs all think she has both but there is that question in the back of my mind..... It makes me wonder how many of the kids from this forum are diagnosed with both. There sure seems to be a lot of us! What is the connection? I've heard that dr j and cunning ham have spoken about this too. Very odd.

My dd just started being able to swallow pills so I can relate to the crushing, etc. That part is definitely easier now. Yes, Dr J does think it is a herx which is suppose to be a good thing. We think that my dd had Lyme, babesia, and bartonella for about two and a half years without treatment for it. Looking back she had the very typical Bartenella stretch mark rash in July of 2008. Of course, none of the doctors at the time recognized it and now the situation is much worse due to their lack of knowledge. This is at least our best guess. I spoke with a public health official epidemiologist? And he said that her reaction is "proof" that she really has tick-borne illness. But, I've personally heard of people getting better without the intense reaction.

Extremely frustrating that our PUBLIC television won't show a documentary. I don't often think conspiracy but this stuff is starting to make me wonder. I just don't get it!! Let's try to get as many people to call as we can. Surely if we all call they will listen!

A bunch of run around IMHO. They state scheduling issues, etc, but nothing that really stops them from showing it. If it were their kids or them they would show it. They just don't get how hard this is and how real it is for all of us.

My dd11 reaction was pretty intense. She was in a great deal of pain in the chest cavity, wrists, knees, throat, ankles, etc. Some days she was barely able to get up. Her eyes were sunken and she appeared pale. She only takes it twice a week and it seems to be getting a little easier, or we are getting use to it! Wow, a 4 year old. That would be hard. Do you have it made into a liquid?

As most of you are aware local PBS stations can download and broadcast Under Our Skin for May's Lyme Awareness month. Unforunately many stations are choosing NOT to download and show this important documentary. I contacted out local PBS in Atlanta this week and was told that they will NOT show it. What an outrage!?!? If you haven't already done so, please take a couple of minutes to personally call your PBS station to make sure that plan on showing it. If you live in Georgia, PLEASE call GPB and let them know that you want this aired. I believe that they will do it if they think enough of us care about this issue. The programing manager's name is Bob Olive and the phone number is 404-685-4788.

So glad you posted this. My daughter has very bad allergies, but since starting the Lyme meds is itching like crazy. She is on singular as well, but one of her DES told us that some of the Lyme antibiotics reduce the effectiveness of the singular. It is hard to know if the itchiness is a herx or just allergy. The pollen count here is very high right now.

Thank you so much for sharing. Sadness and hope all at the same time...

My dd11 a couple of years back went 9 full months with no meds at all after having the toncills and adnoids removed. Then it all came back with abundance. At least we had 9 normal months. I'd love to get back there. I hope his is gone for good!

I am in South Western PA. My Pandas doc is in CT too. Hoping I don't have to travel as far... when was your child diagnosed? My DD is on Biaxin at the moment. She was diagnosed with pandas in 2006, but with Lyme in early March. She is currently taking zithromax, augmentin, enula, rifampin, and tindamax. It may be worth it to travel out of state for the Lyme too. Hopefully some PA people will let you know if they have found anyone worth seeing. I though pandas was bad. I think Lyme is far worse. My dd has a new saying "my life sucks.". I can't disagree with her. I just keep saying things will get better.... I hope you have better luck than we have.

For us, the tindamax seems to really create pain symptoms not so much the rage, OCD stuff. Strangely she never had any aches and pains before the antibiotics. The first couple of weekends she couldn't get out of bed due to so much chest cavity pain. We lowered the dose of tindamax those weekends. She now, a couple od months out, seems to do okay with the tindamax and we give the full dosage. Good luck! Hang in there. You are not alone in this.

For us, the tindamax seems to really create pain symptoms not so much the rage, OCD stuff. Strangely she never had any aches and pains before the antibiotics. The first couple of weekends she couldn't get out of bed due to so much chest cavity pain. We lowered the dose of tindamax those weekends. She now, a couple od months out, seems to do okay with the tindamax and we give the full dosage. Good luck! Hang in there. You are not alone in this.

Hi! We are pretty new to the Lyme thing too. My dd11 has pandas and lyme with coinfections We are traveling from Georgia to ct to see a Lyme doctor and a pandas dr. Finding a Lyme literate dr seems to be a task, particularly that treats kids. I'm sure veterans of this board will help lead you to a good one. What state are you in?

It is strangely reassuring to hear that others are in this with us. My dd11 has pandas, Lyme, bartonella, and babesia. For the first few weeks after starting augmentin, rifampin, zithromax, enula and tindamax (2 days/week), she herxed so badly. She was barely able to move, severe brain fog, pain, extreme worsening of OCD, tics, etc. Now it has been almost two months and most of the pain is gone and her symptoms are better than when she was herxing, but still worse than when she started the antibiotics! I'm so depressed and frustrated. My dd has been through so much and she is right when she says her life sucks. This is a nightmare that just seems to not go away. She's had pandas since 2006 (was diagnosed then) and most likely the Lyme and confections since 2008 (although not diagnosed until march 2011. I feel hopeless and try to act like it is all going to be okay when I'm with her. I am praying for this to all go away and let my child have a childhood. I am questioning everything at this point and wondering if we are doing the right thing at all. Has anyone actually cured their kid of this stuff? I would love to have some encouragement in all of this. Thanks!

My dd was just like this at 7. It is so hard but I refused to be a part of her compulsions. There was so much RAGE over this. We had to put locks on our doors to keep her from running away and restrain her when she tried to hurt herself (or us!). I feel your pain. We learned through CBT that participating makes the OCD worse so that is why I wouldn't say things back to her or how she wanted me to say them. CBT really helped (didn't cure, but helped). Stopping the rituals was crucial for my child, but it was a living nightmare. Still is bad, but not AS bad.

Reading this post is like a window into my dd life. At 7 she developed PANDAS (severe OCD, some tics, extreme separation anxiety, strange hand shaking chorea, etc). Lots of Zoloft, antibiotics, CBT and it helped a little. Removed her tonsils a few years later and she was 9 months without ANY symptoms. All came back. Now Igenex test shows Lyme (wasn't tested before so don't know how long it has been there). Back on Zoloft, Augmentin, Zithromax... Seems to get worse after a few weeks into treatment. I don't know what to do anymore. LLMD says that IV antibiotics were probably why she went 9 months symptom free (part of the tonsillectomy). She is now 11 and we've been at this for so long.... Really wish there was some magic pill to make her well again. I look back at the 9 months without symptoms and mourn. Frustating....