Can Lyme present as Tourette's?

[starlygirl]

My 4 year old son has had a wide variety of motor tics & a couple of vocal tics. It would appear that he has Tourette Syndrome, but I'm wondering if I need to rule out Lyme. He's had a couple of isolated incidents where he got really upset & said it felt like ants were biting his skin (lasted only about a minute). Yesterday, he had something similar but instead of ant bites, he suddenly started itching all over his stomach & back. There is no visible rash. The intense itchy feeling went away after a couple of minutes. Nonetheless, I'm wondering if these odd itching/burning skin sensations could be related to Lyme or coinfections and maybe that's contributing to the tics as well.

 

He was bit by a tick at the age of 2, but I dislodged it within an hour. He did not have any flu-like symptoms afterwards & I did not notice a bullseye rash. He was tested for Lyme by Quest Western Blot a while back & it came back negative, but now I'm reading that this could have been a false result.

 

I'm only just now considering the possibility of Lyme & wondered if anyone else had a child who presented as if they had Tourette's, but it turned out to be Lyme? Did your child have any other symptoms? Did they have a wide variety of tics, both motor and vocal? Was the onset sudden or gradual? Did the tics wax & wane in severity? Thanks!

Edited September 10, 2012 by starlygirl

[rowingmom]

DD10 started ticcing a couple of weeks after an insect bite that left a large purple bruise delineated with a bright red ring when she was 7 years old. There was no EM rash, so my husband and I assumed a spider bite.

 

She began with subtle motor tics which did wax and wane but became especially noticable first with strep infections, and then later with viral infections as well. They disappeared with Abx treatment for strep, but then would return. First came the motor tics which included tongue protrusion, mouth stretching, arm pumping, hand flapping, hair flipping, eye blinking, neck twitching (but usually only one at a time unless the exacerbation was very bad). Next came the palalalia and then echolalia. These were very quiet (under her breath) but also more noticable with exacerbation.

 

Our pediatric psychologist dx her with a motor tic disorder, aspergers, motor delay and ADHD when she was 9, just before we started seeing our LLMD, but she did not notice the palalalia and I did not think to bring it up. It certainly is not as noticable as the motor ticcing. I didn't realize what it was until I researched more into Tourette's - I thought it was just a goofy kid thing. The psychologist said that if vocal and motor tics were present for more than a year there would be a Dx of Tourette's. This has now been going on for 3 years, coming and going depending on treatment, so I guess DD10 qualifies.

 

DD10 tested PCR positive for bartonella and Indeterminate (two lyme specific bands are there but weakly) for lyme through Igenex. While she is on Abx for bartonella (rifampin) and lyme (biaxin) her ticcing disappears. If either of these Abx are withdrawn her motor and vocal tics both reappear (along with PANS symptoms flares - rages, emotional instability, urinary frequency, decline in handwriting skills, decline in maturity level and ability to interact with peers - and bartonella pain). As far as I can see she does not appear to have OCD.

[MichaelTampa]

I'm not a child, but I was diagnosed with Tourette's, from symptoms that have been around since childhood, but that got worse following a traumatic event in adulthood.

 

Tourette's is on a list I have seen as common misdiagnoses for lyme disease. Certainly it happens. Referring to TS as a misdiagnosis in many instances is really not quite accurate, as TS is a collection of symptoms existing for in excess of a year, nothing more or less. For people that have that, they have TS, so it's a correct diagnosis, even if it's not a very useful one in many cases, as it tricks people into believing that nothing can be done about it except cope with it, prominently with drugs. This is the agenda of the TS Association, backed conveniently by drug companies.

 

I probably did not have what would be described as a wide variety of tics. In this category, I did have muscle spasms in various parts of my body, and occasional arm and leg jerks, and most prominently the uncontrolled eye blinking that would often last a minute but occasionally 15 minutes. I have had a variety of other symptoms, for sure, including the feeling of bugs crawling, bugs biting, just itching and itching, and the like; these sensations are common lyme symptoms.

 

If you have not heard, you might want to be aware that no rash does not mean no lyme transmission, and that 1 hour is plenty time for transmission particularly if the tic is removed "incorrectly" as then the transmission can happen during removal, and that lyme can also be transmitted from mother to child (happens plenty of times when the mother is not aware she has lyme until after the child is diagnosed) and also from mosquito to person (just in case your child might have ever been bitten by a mosquito).

 

If possible, you might want to take a relook at the Quest lab test for more information beyond "negative". Sometimes the doctor will just say it is negative, because it is printed on the paper, even though certain band results are shown and can be quite telling in some circumstances. Certainly, Quest is not the best lab to have that test done, but given that you've had it done, you may want to take a good look at it and see if there were any "IND" or positive results for any particular bands.

[rowingmom]

 

I probably did not have what would be described as a wide variety of tics. In this category, I did have muscle spasms in various parts of my body, and occasional arm and leg jerks, and most prominently the uncontrolled eye blinking that would often last a minute but occasionally 15 minutes. I have had a variety of other symptoms, for sure, including the feeling of bugs crawling, bugs biting, just itching and itching, and the like; these sensations are common lyme symptoms.

 

Just in reply to MichaelTampa's explaination of his twitching, DD10's tics ARE accompanied by premonitory sensations. She says she gets a tickle or tingling that will not go away until she completes the tic. I think this may be different from the muscle spasms/twitching mentioned above. I sometimes get muscle twitching myself, but there is no urge involved. DD10 only had the "bugs crawling" sensation once - right before the onset of hives due to an allergic reaction to bactrim, but I have heard that this is a common lyme symptom.

[Hopeny]

My DD has the bugs crawling symptom from Lyme. From what I have read on the internet there are few things that can cause that, so it seems worth looking into Lyme a bit further

[MichaelTampa]

 

I probably did not have what would be described as a wide variety of tics. In this category, I did have muscle spasms in various parts of my body, and occasional arm and leg jerks, and most prominently the uncontrolled eye blinking that would often last a minute but occasionally 15 minutes. I have had a variety of other symptoms, for sure, including the feeling of bugs crawling, bugs biting, just itching and itching, and the like; these sensations are common lyme symptoms.

 

Just in reply to MichaelTampa's explaination of his twitching, DD10's tics ARE accompanied by premonitory sensations. She says she gets a tickle or tingling that will not go away until she completes the tic. I think this may be different from the muscle spasms/twitching mentioned above. I sometimes get muscle twitching myself, but there is no urge involved. DD10 only had the "bugs crawling" sensation once - right before the onset of hives due to an allergic reaction to bactrim, but I have heard that this is a common lyme symptom.

 

Yes, sounds different, for the muscle spasms and arm/leg jerks I'm describing, there is no premonition, no urge, it just happens.

[starlygirl]

Thank you all so much for the replies. Seems Lyme may be worth looking into further, although we don't have any LLMDs nearby, so it will involve traveling. Do any LLMDs work with people remotely? I assume you have to go in person for the first visit at least. On the Quest western blot, my stepdad (a psychiatrist) ordered that for me along with a bunch of other bloodwork I'd wanted to check, so I actually have the original copy of the report that was sent to him by Quest. It doesn't say anything about any bands at all, it just says "negative", but no more details beyond that. I wonder if he could call Quest to get a more detailed report.

[momcap]

DS8 had possible tourettes on his laundry list of psych disorders. He had pretty severe vocal tics every day. The only possible motor tic was an occassional eye blinking/rolling thing, but we only saw it a few times ever. So that prevented a true Tourettes diagnosis. The vocal tics resolved 100% within a couple weeks of starting lyme treatment. We spent the year before that treating PANDAS with single antibiotics, but the vocal tics had continued and even got worse. He did have other classic lyme symptoms too - joint pains, muscle pains, bone pains, sensory issues, bug crawling feeling, tingling feeling, etc. He had a wide range of symptoms that would come and go, but pain of some sort was a constant.

[msimon3]

Yes, it appears it can. Here is a case:

http://www.tourette-gesellschaft.de/rbk2/012b_bts_lymediseasepresenting.htm

 

Lyme can infect any area of the body, and create symptoms that very based on the site of infection or the person infected. For this reason, it is known as the "great imitator" and doctors often misdiagnose.

 

Look into getting an Igenex test, at least the Western Blot. Igenex WB uses two variants of Borrelia and includes IgG and IgM bands that many labs exclude based on CDC-1994 Dearborn criteria. There is a large controversy regarding Lyme and the CDC that I won't go into here, but basically the Igenex test is considered by many to be more sensitive and specific to Lyme infection than traditional labs.

 

There is some good info in many docs here:

http://library.lymenet.org/domino/file.nsf

 

There is also a good radio show here, where a researcher describes how Borrelia infections can actually shut down the immune response and possibly render many antibody-based tests ineffective:

http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease