is lyme disease only caused from ticks?

[tylermom]

i've been reading on here about lyme disease and i was wondering if it is only caused from ticks. also, for those of you whose children have lyme did you actually see the tick bite the child??? does lyme cause tics, ocd, bad behaviors, learning disabilities, or tourette syndrome like symptoms???? the reason i'm really interested in finding out is because when our oldest ds started his tics at 18 months old he had actually been at a family reunion in the woods for the whole day and definitely could have been bitten by a tick now i never found a tick on him but i'm wondering if that matters. we spend a lot of time at my in laws camp in the country which is where ds was right before he came down with tics, ocd, behaviors issues, etc. in fact we went last most to the camp and shortly afterwards my 4 y/o developed his "new" tic of snorting about 200 or more times a day. i did read on here about giving the child ibuprofen to see if the symptoms get better. i will say that i've done this for 2 days and his behaviors seem better and the tics are maybe down to 100 times a day and the ocd seems better. it could just be a coincidence who knows, but i am really interested in learning about how lyme disease can cause PANDAS like symptoms.

 

jennifer

[lyme_mom]

i've been reading on here about lyme disease and i was wondering if it is only caused from ticks. also, for those of you whose children have lyme did you actually see the tick bite the child??? does lyme cause tics, ocd, bad behaviors, learning disabilities, or tourette syndrome like symptoms???? the reason i'm really interested in finding out is because when our oldest ds started his tics at 18 months old he had actually been at a family reunion in the woods for the whole day and definitely could have been bitten by a tick now i never found a tick on him but i'm wondering if that matters. we spend a lot of time at my in laws camp in the country which is where ds was right before he came down with tics, ocd, behaviors issues, etc. in fact we went last most to the camp and shortly afterwards my 4 y/o developed his "new" tic of snorting about 200 or more times a day. i did read on here about giving the child ibuprofen to see if the symptoms get better. i will say that i've done this for 2 days and his behaviors seem better and the tics are maybe down to 100 times a day and the ocd seems better. it could just be a coincidence who knows, but i am really interested in learning about how lyme disease can cause PANDAS like symptoms.

 

jennifer

Jennifer,

 

Your son's history sounds very suspicious b/c of the exposure to the woods prior to the onset of symptoms. It certainly would be worth checking out thoroughly b/c it could lead to a resolution of symptoms if lyme is involved. The testing for all of these things is not reliable so it is best to visit an ilads-trained doctor for an evaluation. Of course it is also wise to get the Igenex test done (igg and igm for lyme) b/c all other standard tests are not very good. Even a negative igenex test does not mean a child does not have lyme. It just means that the child's body is not making antibodies to lyme. This can happen when a person is so sick with lyme disease. This is why the symptoms are so important. In any event, if lyme or bartonella or babesia are suspected, what do you have to lose by treating it? These kids are on long term antibiotics anyway, there is no harm in trying the right combination of antibiotics that could kill a suspected lyme/babesia or bartonella infection. The treatment for lyme should kill mycoplasma too.

 

You can get lyme disease from ticks but they also believe mosquitos, biting flies and fleas can give you Lyme. In Europe they did studies where they found spirochetes in the guts of these biting insects. You do not need to see the tick and most people do not. Also, most people don't get a bullseye either. We didn't see a tick or get bull-eyes in our family but we had lyme. I wish I had known what the symptoms of lyme are when my son first started showing some signs. We think he had it several years before he was diagnosed but I didn't know anything about Lyme. Apparently my pediatrician didn't either :-(.

Also an infected mother can pass it to her child in vitro or through breastmilk. This has been well-documented.

 

Yes Lyme can cause all of the symptoms of PANDAS. I have posted that my LLMD says that 60% of the kids with PANDAS that he sees have lyme. He treats these kids for strept AND the lyme infections and he says he has a lot of success. They often use bicillin shots for the strept and the lyme antibiotics on top of this. This is why it is critical to make sure that lyme/babesia/bartonella are not the cause of the symptoms especially before steroid treatments. Also, if a child has a lyme illness you would get more out of IVIG if you do it once the infection is under control. Ideally you wouldn't need to do it all with the right lyme treatment. One expert told me that doing IVIG on a child with lyme "is like throwing a glass of water into the ocean."

 

I posted some good links on the Cure Unknown thread. You can go to these links to get more info on the symptoms of lyme in children.

 

Lyme Mom

[tylermom]

thank you lyme mom for the info about lyme's. can you tell me what a ilads doctor is and where can i find one. do the few doctors that treat PANDAS also test or treat lyme?? thanks!

 

jennifer

[lyme_mom]

thank you lyme mom for the info about lyme's. can you tell me what a ilads doctor is and where can i find one. do the few doctors that treat PANDAS also test or treat lyme?? thanks!

 

jennifer

 

An Ilads-trained doctor is a doctor who is a member of the International Lyme and Associated Diseases Society. These doctors train under doctors who have expert knowledge of how to treat lyme. They also go to conferences every year where they share information on what works and what doesn't work. Some of these doctors have a lot of experience with PANDAS as well as Lyme (as my two ilads doctors do). My big concern, and the reason I contribute to this forum on the subject of lyme, is that these PANDAS specialists might be missing a lot of lyme if they are relying on standard tests and not treating the symptoms they see. Parents need to be educated about lyme so they can be sure their child has been properly evaluated. I would not use a doctor to treat my family for lyme who is not an ilads doctor, period. I want to get rid of it and I want someone who has a lot of experience doing this day in and day out. There is no cookie cutter approach to treating lyme-its a speciality unto itself and every case is a little different. Lyme is a persistent and stealth pathogen, very hard to get rid of. A short course of antibiotics is almost never enough. If someone has had lyme a long time or if co-infections are involved it is a real challenge to treat. You can email Barbara at Ilads at this address contact@ilads.org and she will give you the name of a doctor near you.

 

Lyme Mom