My 5 year old son was just diagnosed with Lyme 2 weeks ago (positive IgeneX IGG). His primary issue is neurological. He developed a motor tic (mouth stretching) approximately 6 months after the tick bites and has had several others since then. It has taken a long time to 'connect the dots' to Lyme (almost 2 years). I had never heard of Lyme causing motor and vocal tics. I know, even with Lyme, this is a more unusual presentation.
We have been to see an LLMD and he put my son on oral amoxicillin. I did mention to the doc that we had seen an improvement in my son's motor tics toward the end of abx treatment for other illnesses (strep, URI) last fall (standard 10-day course), so that might be why he chose amox. However, my son has been on the amox. for a little over 2 weeks now and there is NO improvement in his motor tics this time. After the last round of abx in December, his motor tics came back worse than ever before and I wonder if it's because the bugs were ****ed at being attacked and came back even stronger afterward.
I've read that when there is neuro involvement due to Lyme, IV antibiotics are usually used. I'm a little leery of IV because of his age and the risks, but I wonder if we don't see improvement and need to go to IV, are we making it worse by trying orals first?? I guess I just don't know if orals can ever be as effective as IV. Does it just take longer, or is there no way orals can ever penetrate as well?
Any advice would be appreciated!
Posted by Carol in PA (Member # 5338) on :
The Lyme bacteria live in our cells and use up our magnesium. We need magnesium for all the enzyme processes.
Supplement magnesium and provide magnesium rich foods in the diet, and see if this helps. That website has alot of helpful information.
Carol
Posted by Lymetoo (Member # 743) on :
Orals can work very well .. and yes, takes longer. But IV has many risks and I would be hesitant to use IV for motor tics.
Can he take other meds besides amoxy?
Posted by Dawn in VA (Member # 9693) on :
Have you read Dr Burrascano's treatment guidelines for kids? I'm sure it's somewhere up top on the medical forum here as a sticky tab for newbies. If not, do a search and it will come up.
I'm with Lymetoo on this question- anything else aside from amoxy?
Posted by Aimee (Member # 20946) on :
We are a family of 6, 5 of us have tested positive for Lyme and at least one co-infection.
One of my children presented with motor tics and night sweats as his only symptoms. We treated Lyme and Babesia first for 3 months. The motor tics remained. Our LLMD decided to try something that had some activity against Bartonella. Bingo. Less than one month on Bactrim in addition to Amox and Mepron and the tics are almost gone. He still occasionally will do the mouth stretching thing, but he had three other noticable facial motor tics that are now GONE.
I would try some different oral abx before thinking of IV in a child.
Hope that helps!
Posted by tick battler (Member # 21113) on :
My entire family of 5 is infected, and one of my boys (age 5) has motor tics from Lyme/coinfections as well. He has tested positive for lyme, bartonella and babesia and has behavior and hyperactivity issues as well.
I agree with Aimee that the motor tics may be caused by bartonella or mycoplasma or something else besides lyme. Almost all patients with chronic lyme have coinfections, so I would consider giving him bactrim for bartonella in addition to the amox to see if anything changes.
He could also take azithromycin along with bactrim if you want to try a new protocol. That would hit both lyme and bart in most cases. Although in some cases you need rifampin to hit the bartonella, as the bactrim doesn't work. This happened with one of my other boys.
Bactrim did help my son to some extent but it did not fully clear the motor tics. He is now pulsing Flagyl as part of his protocol, which seems to be helping a little, but it is too early to tell.
I would not go to IV at this point. Also,you should know that unfortunately this is a very long road. Our LLMD told us to expect 1 to 3 years of abx treatment to cure my children.
You are a great mom to have connected the dots. That hurdle is very hard to reach. It took me 2 years as well to diagnose my first child.
Glad you have found this board. You will learn so much. It is a wonderful resource.
tickbattler
Posted by JT's Mom (Member # 24553) on :
Thanks everyone for the responses.
Dawn - I did read Burrascano's guidelines, and I think they say IV even for kids, which is why I was a little leary of orals at first.
I feel better about sticking with oral abx thanks to the responses from Aimee and Tickbattler indicating their children's improvement on orals.
It sounds like it will be a lot of trial and error with different meds until we find the one that works. I put a call in to our LLMD today to ask about switching to a different abx. He said we would try a cephalosporin if the amoxy didn't seem to be making any difference.
Posted by tick battler (Member # 21113) on :
Hi again,
Just to let you know, I don't think the cephalosporin will hit bartonella either, if that is what is causing his motor tics. It is worth trying though, b/c it's possible the tics could be from Lyme. We don't really know for sure. You can always add a bart drug along with the other down the road.
Does he have any other symptoms?
tickbattler
Posted by JT's Mom (Member # 24553) on :
Tickbattler,
My son doesn't really have any major symptoms other than the motor tics, although we do think he's overly moody compared to other kids and his emotions tend to swing to the extreme. He's had a few other symptoms that were very short lived... complained that his knee hurt only 1 day then never again, ear pain for several days last fall (no ear infection), and dark cirles under his eyes on occasion. That's about it really.
I'll ask the doc about bartonella and see if we can add another abx for that along with the cephalosporin.
Thanks!
JT's Mom
Posted by sutherngrl (Member # 16270) on :
No way would I put a 5 year old on IVs! Did your doctor even suggest that?
Posted by NYStateDad (Member # 30160) on :
My son (11) was diagnossed with LD (IgM 23/41) one month after his facial motor tic started. Amox for almost 3 months and Azith for about 6 weeks have reduced the frequency by 90% and the tic stopped after the first 48 hrs on Amox.
Tic is now seen in phases of 2 - 3 days, more mild, and later in evening on school nights, during homework or stressful periods. Could be a combination of stress, fatigue and diet (low Mg).
Seeing LLMD on Tue, will ask to add a second Mg with dinner or switch to Mg maleate / Mg salts (not Mg oxide)
Will keep the board informed as it is an under-reported symptom of disseminated LD.
Scott
Posted by momlyme (Member # 27775) on :
The only thing that got rid of my sons motor tics was a product called Cal-Mag. It's a powder. http://www.calmagstore.com/
I mix a teaspoon with 1/2 cup of boiling water - then I add stevia and a little apple juice for flavor.
We had tried a few other magnesium supplements and this was the first that got rid of the tics.
***I have no affiliation with either link - just where I decided to buy from... after much research!
Posted by merrygirl (Member # 12041) on :
I am wondering if your children have any non neuro symptoms like fatigue or pain? I ask because my son just developed severe ocd one day out of the blue 2 weeks ago.. no other physical symptoms. I think he has pandas, but taking him to llmd to rule out lyme and co.