Lyme & Bartonella

[Teri]

Hi folks,

My DD 6 has PANDAS and has been on Azithromycin since March 2012. In May I pulled a deer tick off of her abdomen. From everything I read the chances of her getting Lyme from a tick that had been on her less than 24 hours was slim. 5-6 weeks later she was sick for about two weeks with a low grade fever, painful stomach cramps, and loss of appetite. Back then we just thought it was a stomach bug. By July We saw a big flare of OCD behaviors, anxiety, mood swings, and eventually the resurfacing of a facial / neck tick. She had labs done in August & PANDAS Dr. Added Cipro to the meds. Just found out last week she is positive for both Lyme & Bartonella. We have an appointment to see Lyme specialist in March. After consulting Lyme Dr. , PANDAS Dr. Is going to keep her on Azithromycin & Cipro to treat Lyme, Bartonella, & manage PANDAS.

 

My question is how do we know she is healing? What else can we do to help her heal? What can we expect? It's been a roller coaster so far?

 

We do probiotics & Lamisil for yeast if it's necessary.

Edited October 9, 2012 by Teri

[philamom]

Hi folks,

My DD 6 has PANDAS and has been on Azithromycin since March 2012. In May I pulled a deer tick off of her abdomen. From everything I read the chances of her getting Lyme from a tick that had been on her less than 24 hours was slim. 5-6 weeks later she was sick for about two weeks with a low grade fever, painful stomach cramps, and loss of appetite. Back then we just thought it was a stomach bug. By July We saw a big flare of OCD behaviors, anxiety, mood swings, and eventually the resurfacing of a facial / neck tick. She had labs done in August & PANDAS Dr. Added Cipro to the meds. Just found out last week she is positive for both Lyme & Bartonella. We have an appointment to see Lyme specialist in March. After consulting Lyme Dr. , PANDAS Dr. Is going to keep her on Azithromycin & Cipro to treat Lyme, Bartonella, & manage PANDAS.

 

My question is how do we know she is healing? What else can we do to help her heal? What can we expect? It's been a roller coaster so far?

 

We do probiotics & Lamisil for yeast if it's necessary.

Gosh...so lucky you saw it. Was it in the belly button? Glad to hear she is being treated - keep appt with the lyme doctor and occasionally check for a cancellation.

[Teri]

Hi folks,

My DD 6 has PANDAS and has been on Azithromycin since March 2012. In May I pulled a deer tick off of her abdomen. From everything I read the chances of her getting Lyme from a tick that had been on her less than 24 hours was slim. 5-6 weeks later she was sick for about two weeks with a low grade fever, painful stomach cramps, and loss of appetite. Back then we just thought it was a stomach bug. By July We saw a big flare of OCD behaviors, anxiety, mood swings, and eventually the resurfacing of a facial / neck tick. She had labs done in August & PANDAS Dr. Added Cipro to the meds. Just found out last week she is positive for both Lyme & Bartonella. We have an appointment to see Lyme specialist in March. After consulting Lyme Dr. , PANDAS Dr. Is going to keep her on Azithromycin & Cipro to treat Lyme, Bartonella, & manage PANDAS.

 

My question is how do we know she is healing? What else can we do to help her heal? What can we expect? It's been a roller coaster so far?

 

We do probiotics & Lamisil for yeast if it's necessary.

Gosh...so lucky you saw it. Was it in the belly button? Glad to hear she is being treated - keep appt with the lyme doctor and occasionally check for a cancellation.

[Teri]

No - not in her belly button. It was actually on her side on her rib cage. She is very sensitive to bug bites so I noticed the red bite mark. Initially thought it was a mosquito bite with a small scab on it. As I looked closer I could see it was a tick attached to her. I actually had pulled an engorged tick off my inner thigh several days before that so in a way I was kind of "on alert".

My own Dr. Only wanted to test for Lyme if I had any of the classic symptoms (bullseye rash, flu like symptoms). I have had none of these although I have had some unexplained rashes since July.?

[LNN]

There's no way to predict how your child will heal and if there will be other things you uncover as you go. Just prepare yourself for a marathon rather than a sprint. Some of my son's issues resolved w/in 6 months of treating lyme. Others persist or see-saw.

 

I think for me there are two major differences being in the lyme world compared to Pandas. First, the fear is gone. In Pandas, you live in constant fear that a wayward germ will tumble the house of cars and make your kid go nuts. In lyme, the chronic infection is always there - with good periods and bad. But I stopped living in panic mode. It became more like a siege mentality - we were in the trenches for the long haul.

 

The second difference is that as my son has progressed, the mental issues are shorter lived and the symptoms have taken on more of a physical aspect. Muscles hurt more, headaches are more common. But when OCD comes, it stays for less time. When hyperactivity comes, it's a 4, not an 8. When strep comes, we get a Pandas flare, but in the 2 range, not the 10 range. So it's been an evolution.

 

In lyme world, we learned more about a holistic approach to health - how to help the body handle a herx, looking at nutritional deficiencies that can set the body up for a harder time fighting infection, detox to help shed the garbage, looking at metals, viruses, mold, genetic issues - all these things can come into play once you've lived with a chronic infection and/or autoimmune problem. So it is more of the same roller coaster, but with a more comprehensive list of things to explore (aka money suck) but in the end, I think you end up with a healthier body.

 

As to knowing when she's healing - you'll know. It won't be a straight path. There will be set backs. But you'll know. Most everyone I know thinks the world of Dr J. The one thing you may need to do without his guidance is look at detox, as I don't think he focuses on this much.

[Hopeny]

Teri my 8 y.o. daughter was diagnosed in January 2012 with Lyme, PANDAS in March 2012. Looking back we believe she acquired Lyme in 2010. She never had a bullseye but reading the copy of her file and a note I wrote to the doctor at that time, she did get a rash. She has been on heavy antobotics since May, and we have seen much improvement. She was on Doxy for 2 months and Augmentin/Biaxin for the rest. Similar to LLM we have seen many PANDAS symptoms abate, with pesky Lyme symptoms lessened but still persistent. So just hang on. You may want to review Burrascano's guidelines for treating Lyme, Azith is not a lone treatment for Lyme so that may be why you have not seen much progress. I do want to tell you from personal experience that the tick needing to be attached for 24 hours is a complete myth. My sister was camping with my 5 y.o. nephew and checking for ticks every 12 hours, she removed one from his side that had been attached <12 hours, and was not engorged. I freaked and insisted he go on the ILADS amox dose, his ped agreed but only gave him 10 days worth. about 24 hours after stopping he woke up and could not move his legs. Scary. After 5-6 additional weeks of abx, he is ok now. My 3 year old developed a bullseye this summer on her forearm, we are pretty vigilant so unless it was an almost invisible nymph she did not have a tick on for very long, we never saw it and that part of her arm is pretty prominent. You will find that most of what you hear from mainstream medicine, including the 24 hours to transmit, about Lyme is inaccurate. There is an excellent book called Cure Unknown by Pamela Weintraub, it gives a tremendous amount of background you may find helpful. Hugs everything will be ok. Knowledge is power in these cases, now that you know what you are dealing with you are better prepared to fight. For your own case, I am a big advocate of treat the bite. There is just too much at stake with Lyme not to.

[MamaOnAMission]

what do you mean that "azith is not a lone treatment for lyme??"

[KaraM]

I think she means that just taking Azithromycin is not sufficient to get rid of the Borrelia bactera. You need to give antibiotics in addition to the Azith.

 

This was our experience. Our dd did improved just on Zithromax for about six months, then took a nosedive. When we discovered Bartonella a few months after that and added Bactrim to the equation, she started to improve again. She needed the combination of the two.

(And eventually Tindamax as well)

 

what do you mean that "azith is not a lone treatment for lyme??"

[Teri]

Teri my 8 y.o. daughter was diagnosed in January 2012 with Lyme, PANDAS in March 2012. Looking back we believe she acquired Lyme in 2010. She never had a bullseye but reading the copy of her file and a note I wrote to the doctor at that time, she did get a rash. She has been on heavy antobotics since May, and we have seen much improvement. She was on Doxy for 2 months and Augmentin/Biaxin for the rest. Similar to LLM we have seen many PANDAS symptoms abate, with pesky Lyme symptoms lessened but still persistent. So just hang on. You may want to review Burrascano's guidelines for treating Lyme, Azith is not a lone treatment for Lyme so that may be why you have not seen much progress. I do want to tell you from personal experience that the tick needing to be attached for 24 hours is a complete myth. My sister was camping with my 5 y.o. nephew and checking for ticks every 12 hours, she removed one from his side that had been attached <12 hours, and was not engorged. I freaked and insisted he go on the ILADS amox dose, his ped agreed but only gave him 10 days worth. about 24 hours after stopping he woke up and could not move his legs. Scary. After 5-6 additional weeks of abx, he is ok now. My 3 year old developed a bullseye this summer on her forearm, we are pretty vigilant so unless it was an almost invisible nymph she did not have a tick on for very long, we never saw it and that part of her arm is pretty prominent. You will find that most of what you hear from mainstream medicine, including the 24 hours to transmit, about Lyme is inaccurate. There is an excellent book called Cure Unknown by Pamela Weintraub, it gives a tremendous amount of background you may find helpful. Hugs everything will be ok. Knowledge is power in these cases, now that you know what you are dealing with you are better prepared to fight. For your own case, I am a big advocate of treat the bite. There is just too much at stake with Lyme not to.

[Teri]

Teri my 8 y.o. daughter was diagnosed in January 2012 with Lyme, PANDAS in March 2012. Looking back we believe she acquired Lyme in 2010. She never had a bullseye but reading the copy of her file and a note I wrote to the doctor at that time, she did get a rash. She has been on heavy antobotics since May, and we have seen much improvement. She was on Doxy for 2 months and Augmentin/Biaxin for the rest. Similar to LLM we have seen many PANDAS symptoms abate, with pesky Lyme symptoms lessened but still persistent. So just hang on. You may want to review Burrascano's guidelines for treating Lyme, Azith is not a lone treatment for Lyme so that may be why you have not seen much progress. I do want to tell you from personal experience that the tick needing to be attached for 24 hours is a complete myth. My sister was camping with my 5 y.o. nephew and checking for ticks every 12 hours, she removed one from his side that had been attached <12 hours, and was not engorged. I freaked and insisted he go on the ILADS amox dose, his ped agreed but only gave him 10 days worth. about 24 hours after stopping he woke up and could not move his legs. Scary. After 5-6 additional weeks of abx, he is ok now. My 3 year old developed a bullseye this summer on her forearm, we are pretty vigilant so unless it was an almost invisible nymph she did not have a tick on for very long, we never saw it and that part of her arm is pretty prominent. You will find that most of what you hear from mainstream medicine, including the 24 hours to transmit, about Lyme is inaccurate. There is an excellent book called Cure Unknown by Pamela Weintraub, it gives a tremendous amount of background you may find helpful. Hugs everything will be ok. Knowledge is power in these cases, now that you know what you are dealing with you are better prepared to fight. For your own case, I am a big advocate of treat the bite. There is just too much at stake with Lyme not to.

 

Thanks for your feedback. With regards to the medications that my daughter is on ....back in May when she was bit by the the tic she was on Azithromycin already. In August Dr. B added Cipro 2x. a day. So she has been on both Azithromycin & Cipro for almost 8 weeks now. Dr. B consulted with Dr.J and he agreed that this combo would target all three: PANDAS, Lyme!, & Bartonella. We cannot use Bactrim, Amoxicillin, or Omnicef as DD is allergic to them. Dr. J feels it will take a while for her to heal ... So we will stay the course for now.