vocal/motor tics as symptom of Lyme or co-infections

[keeptrying]

I am beginning down the Lyme journey for my daughter. I have spoken with some here that have been life savers but want to put this out to others that may be in my shoes. My dd's main symptoms are tics (have anxiety and mild ocd too), most of the doctors we have seen have said that tics are not a symptom of Lyme disease. Dr. K was very helpful when I was looking for information on pandas and while deciding on ivig but he also said tics are not a symptom and never have been. Help! Is there anyone out there experiencing these symptoms with no joint pains or other "typical" symptoms of TBI? I am scared. We thought pandas and ivig has not helped. Now we think maybe babesia.. So confused to say the least. Any help would be appreciated.

[rowingmom]

My 10yo daughter had a bite with atypical (1 inch diameter red rash, no EM)in 2009. Her motor tics began 1 month later along with an increase in ADHD symptoms, but no pain. This continued until Jan 2011 when she started to display bone pain, headache, IBS symptoms and the motor tics evolved to include vocal tics as well. She has tested positive for bartonella and indeterminate for lyme through IGENEX.

[lismom]

Yes we have motor tics along with some typical lyme/bart symptoms. Some symptom lists have it classified as twitching but to me they are tics. My son has specific facial tics which is on the long list of symptoms. Throughout the last 3 years howvever, he's had mild vocal and body tics. I've seen them come, go and change. Right now I've added in grapefruit seed extract again, (I'm pulsing) and each time I see the tics leave and fatigue come. I believe the body reacts the same way it would with PANDAS.

[keeptrying]

Yes we have motor tics along with some typical lyme/bart symptoms. Some symptom lists have it classified as twitching but to me they are tics. My son has specific facial tics which is on the long list of symptoms. Throughout the last 3 years howvever, he's had mild vocal and body tics. I've seen them come, go and change. Right now I've added in grapefruit seed extract again, (I'm pulsing) and each time I see the tics leave and fatigue come. I believe the body reacts the same way it would with PANDAS.

 

thanks so much for this. Can you tell me why the ge extract? Are you also doing treatment for the lyme/Bart?

[lismom]

Yes we have motor tics along with some typical lyme/bart symptoms. Some symptom lists have it classified as twitching but to me they are tics. My son has specific facial tics which is on the long list of symptoms. Throughout the last 3 years howvever, he's had mild vocal and body tics. I've seen them come, go and change. Right now I've added in grapefruit seed extract again, (I'm pulsing) and each time I see the tics leave and fatigue come. I believe the body reacts the same way it would with PANDAS.

 

thanks so much for this. Can you tell me why the ge extract? Are you also doing treatment for the lyme/Bart?

 

 

The gse extract is to address the lyme cyst form, yeast if its there and biofilm. I decided to use this instead of tindimax for the cyst busting. Just personal preference. I've used it for a while now and see something everytime so I know its doing something. And yes my son is on mino and rifampin.

[Iowadawn]

Yes, we have tics (v/m) here. We had them when we were being treated as strictly PANDAS. We have them as we treat for TBI. Other infections besides strep can cause PANDAS (PANS or PITAND) symptoms--Bb included. Kiddos with other bugs and PANS sxs--Bb included--have caused elevated results on the Cunningham tests. The researchers are starting to get that word out. Autoimmunity. I am guessing that the docs just are not seeing Lyme as capable of causing an autoimmune reaction? Or even neurological Lyme? My thoughts. Dawn

[Iowadawn]

I am beginning down the Lyme journey for my daughter. I have spoken with some here that have been life savers but want to put this out to others that may be in my shoes. My dd's main symptoms are tics (have anxiety and mild ocd too), most of the doctors we have seen have said that tics are not a symptom of Lyme disease. Dr. K was very helpful when I was looking for information on pandas and while deciding on ivig but he also said tics are not a symptom and never have been. Help! Is there anyone out there experiencing these symptoms with no joint pains or other "typical" symptoms of TBI? I am scared. We thought pandas and ivig has not helped. Now we think maybe babesia.. So confused to say the least. Any help would be appreciated.

 

I do not think that Dr. K is exactly on the Lyme/TBI boat, yet. I know he is on the same wavelength that

"it isn't just strep". My guess is that he probably comes down on the IDSA side of dx/tx of Lyme. I can be more specific in a PM. Dawn

[Orion]

When DD had her first major relapse- 3 yrs after the EM rash was misdiagnosed and (inadequte) initial treatment delayed- her first symptom was repeating words in the middle of a sentence. (For example:"The dog food food food is in the dish.") She had no inkling she was doing it. And it only happened every few days. Luckily it wasn't just me that picked up on it.

 

A short while later she had an atypical 'flu', a strange stretch-mark like rash on her back appeared (later Dx'd as a bartonella rash), then a whole host of neurological ailments slowly started up.

 

The PANS/PITAND movement disorder didn't start until a third relapse 2 years later.

[keeptrying]

thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.

[911RN]

thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.

 

Cough with exertion can be a form of reactive airway disease (RAD)- like Asthma. Exercise induced cough/RAD/Asthma. Sometimes, cough is THE only symptom of this. It tends to be a dry cough. This may also be consistent with child with allergies, eczema or known wheezing events with illness/colds.

[lfran]

My DS10 tested with postive antibodies for Bartonella and a positive urine DOT blot test for lyme (Igenex). His Western blot for Lyme was not positive by Igenex or CDC standards, but I researched a lot and he would have been diagnosed with a postive Western blot in both Europe and China, based on his reactive bands.

 

He has no joint pain or other physical symptoms. His main symptoms are chronic motor tics, high anxiety, and minor compulsions. Treatment wth abx, including for bartonella, has made the anxiety mostly go away (bart is associated with anxiety). Still hoping for the tics and compulsions to fade with continued treatment.

 

Have you seen an LLMD or done the Igenex or other testing? There is a new test that looks for the spirochetes in the blood, but you have to be off abx for a month and it will miss 20% of the positive cases. Still, it sounds good to have proof, you know?

 

 

thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.

[rowingmom]

thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.

 

Between the time my daughter was bitten (2009 7yo) and when her pain symptoms started (2011 9yo) she displayed a lot of ADHD symptoms with some social regression and rage at frustrations. She also forgot how to use a pencil in grade 4. She was very forgetful and easily distracted. I had to remind her to clean up her room, get dressed for school etc. 5-6 times before it would be accomplished. Usually I would just give up and put the clothes on her myself. She was always late for the bus, it was like herding cats to get her out the door. At school she had to join the remedial class at lunch time because the special ed teacher there would remind her to eat lunch. If she stayed in her own class she would be distracted by books/drawing etc. and forget to eat. The dog would actually wait to eat until she got home in the afternoons, because he knew that he would be getting her lunch on his kibbles. I would have to go back to the school to retrieve forgotten homework every day, even though she had noted it in her agenda. After 5 months of lyme/bart treatment she does things before being asked (clean room, set table), is more age appropriate, deals with frustrations better, remembers her homework, has had a huge improvement in writing ability, and the motor/vocal tics have disappeared - Yeah!. I don't think this was just a case of sudden maturation.

Edited November 10, 2011 by rowingmom

[tpotter]

thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.

 

Cough with exertion can be a form of reactive airway disease (RAD)- like Asthma. Exercise induced cough/RAD/Asthma. Sometimes, cough is THE only symptom of this. It tends to be a dry cough. This may also be consistent with child with allergies, eczema or known wheezing events with illness/colds.

 

 

Dry cough can also be an indication of MycoP. I had it for years, and even though I didn't feel well, and my overall IgM came back positive, no one followed up until last year. MycoP can be a co-dx of Lyme. It also causes many of the symptoms. We found out I had it (very highly positve), because Dr. B. was testing everyone in my family for MycoP and Strep (all the top PANS docs know that mycoP can cause many of these symptoms and are testing for it. If you haven't already, I would suggest that you have everyone in your family tested.