husband's tics possibly lyme related?

[cmomma]

I posted this same post in the Tourette's forum and they suggested I post it over here to see what you all had to say...

 

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Hi everyone! I am new here as my husband's tics have been causing concern for us. This is long, so bear with me!

 

Ever since I've known him (6 years) he has had mild tics (eye rolling occasionally, sniffing always) but I never really thought of them as tics, more like mannerisms...and he never knew they were tics either, but they were always noticeable. He's 27 years old now, if that makes a difference.

 

2 summers ago I noticed him kind of grimmacing his lower lip over and over, and asked him about it. He said it was nothing- just ignore it. Then he started tensing his stomach muscles all the time. I started getting worried so we were looking things up online, and found that he has motor tics. All that we were reading made sense, and he actually said that when he was a kid he remembers adults around him saying that he might have Tourette's but he never went to the doctor for it or anything (so that shows that he has had some form of tics his whole life).

 

Also around this time he got Lyme disease, detected about a month later, and treated with 2 cycles of antibiotic, and has had negative blood tests since.

 

He went to the neurologist about the tics and was told he has chronic tic disorder and that was basically that. We figured it was just something he had to deal with, and it didn't really affect his life much, it was just kind of annoying.

 

He has more recently developed a leg tic that causes him pretty severe muscle soreness by the end of the day. He tenses his feet and legs. I feel really bad for him. He says it is worse when he is stressed and when he is driving and that if he really concentrates he can delay doing the tic but he can't stop it. He says he also does that stomach clench about once a day but it is not noticeable to me, and it used to be horrible. The pain this tic is causing him is leading us to want to find relief for him, or an answer to why this is happening.

 

Can anyone give us any guidance on where to begin? Do you think the Lyme has anything to do with it (my husband thinks it might, but I think it doesn't because of the negative blood test, and because he has had some form of tics - just not this severe - his whole life)?

 

We are at a loss. We know that he has it "easy" compared to some people, but he is in pain every night and it just scares me to think that his body is acting this way, and wondering if it could get worse, or if our children are more likely to have this because he does. I guess I'm just looking for some guidance on what we can do, if anything!

 

Thank you all for listening/reading!

 

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That was the original post I posted...since then his leg tics have gone away but the abdominal tic is in FULL force it is horrible to see and it is really stressing him out not to mention causing him a lot of discomfort.

 

What do you all think regarding the Lyme disease? Do you think it has something to do with the tic he is experiencing? Would he have other symptoms? Any insight you can give me would be so helpful. Thank you.

[LNN]

There is a lot of controversy surrounding the accuracy of blood tests for lyme. Last fall, a new test came out that can culture the bacteria from a blood sample - much like a strep test - if something grows in the petri dish, you have the bacteria in your body. The test will catch about 80% of lyme cases. It isn't covered by insurance, but it might be worth it to you to be able to know whether to pursue treatment. It's about $500. I don't recall the name of the company but a few members have used it and they will hopefully chime in. The forum gets quieter in the weekend, so it may be a day or two before someone replies.

 

You don't mention any other lyme symptoms. You may want to do some research to see if anything else jumps out of you. My son did have tics and they cropped up when we did a particularly aggressive treatment - the toxins that built up from the dying bacteria caused the tics. But they resolved when we backed down and moved to a different combo of antibiotics. However, he also had a number of other lyme symptoms and suspicious blood work. I'd consider the lyme culture test as the best way to get a quick answer.

[MichaelTampa]

It wasn't clear to me reading it, but it sounds like you're saying that 2 summers ago he got lyme disease? What makes you say/think that he got lyme disease then, as opposed to getting it at any other point in time? Was he bit by a tic then? Did he have a lot of other symptoms at that time that went away with treatment? There are many lyme symptoms, I believe there is a thread at the top, perhaps the helpful links that lists many, and you can also google to find some. As LLM suggests, it would be good to take a look at that and see what else looks familiar.

 

I am someone who was diagnosed with Tourette's as an adult before figuring out it was lyme disease. I am in the camp that Tourette's is always something that is caused by something else, in other words, that there are reasons for the symptoms, which sounds simple when said in certain ways, but is contrary to what most docs would say is that it is always simply just something you have and that's it. Sometimes that cause is related to structure of bones, sometimes it is from lyme disease, there have been cases caused quickly by acute heavy metal poisoning and cured almost as quickly when that was addressed, and certainly there are other causes as well.

 

You don't mention what type of lyme test shows negative, but if it is an ELISA style test, realize that does not mean much when those show up as negative. The western blots, while they have many problems with them, can be more telling particularly for someone who is not terribly sick, but you have to look at all the band results and not just go why if there is an overall "negative" showing somewhere. So you might look up what you really have there.

 

Here is the link to the "helpful threads/links" where if you go down a few posts there is a list of symptoms you might look over and consider.

 

http://www.latitudes.org/forums/index.php?showtopic=10804

Edited February 12, 2012 by MichaelTampa

[Fixit]

I have not read the posts, but i am sure everyone is very helpful.

this is a great site.

 

Just from personal experience my dh has always had a minor tics and was also told it was chronic tic.

I was more worried when my child started with "transient tics".

 

 

But before we even had kids, i noticed that my dh ticced less, very very mild while on abx.

My dh used to get strep 3 times a year for the 20 years i have known him.(i'm only 25 )

I do think he might have lymes as well, but he is not my focus right now.

dh's tics did get better on long term abx. we had his tonsils out a year ago and he has not had strep in a year plus that we know of.

Though he may be pandas from a purest point of view and would undoubtedly be an autoimmune condition at this point.

I have not checked him for "lyme".

He did grow up in the DC suburbs and says he can't even begin to count the number tics he has pulled out of his skin.

Hopefully i will begin to focus a little on him this year.

 

I believe Michael Tampa (an adult male) is recovered or almost recovered and is a great source of hope and information.

 

I have hope that my boys will recover and that i possibley recover my hubby or at least improve him by a good margin.(he's not a good patient)

 

I am sure you will be able to help your dh, but it might be a long road no matter what the final "cause" may be.

Edited February 29, 2012 by Fixit