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Hi,

 

My son is currently being treated for lyme by an LLMD and has been on Biaxin and Omnicef for 4 months. Unfortunately his only symptom of tics has not improved. He was on Alinia and Azithroymicin for 2 months prior to this combination with no improvement. He had a positive urine dot blot back in October 2010, all his coinfection testing has been negative and his most recent Western Blot is negative with an IGM positive on band 41 and IND on band 39 (previously band 39 was positive) and his CD57 is still at 25. LLMD gave us the option of staying on Biaxin and Omnicef another 2 months or switching to treat for Babesia. He feels that is the one co-infection that has not been targeted with his treatment protocols. We are confused what to do as doctor gave us scripts to start Azith and Mepron for Babesia. It is hard to begin Mepron without a clear clinical picture of babesia or positive testing. My son is 6 and had night sweats prior to treatment and a re-appearance of night sweats with treatment, daytime sweating to the extent of getting heat rashes but no fever (in fact low body temp), petechial rashes of dots and lines for one month that have now stopped. However this morning I saw an eye roll and he became upset stating that its (eye blinking, rolling) is getting worse. It is obvious that all his tics (motor tics of wiping, blinking, neck and arm movements) are all ramping up.

 

Does anyone have any experience in treating babesia and their child's tics improve? I keep wondering if it makes more sense to try to treat for Bartonella? As many of you know this is so difficult but it really is hard to hear him say its worse and ask why we are not helping and changing his medications. Needless to say, its been a tearful morning for me, so any feedback is very much appreciated! Thank you.

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I don't have a clear cut answer for you only to say that we are treating for bartonella first, with a combo of meds that treats lyme same time as well. I have seen my sons tics go from really bad to mild and non existent throughout our last 3 months. I personally think keeping the bacteria in the gut in imperative as well. I was told that Bartonella is the hardest and the longest to go. Does your son have the dark stetch marks on back or torso? have you tested for it? sounds like a change is due.

 

Also, I have seen that a toxic back up make the tics worse as well. kathy

Edited by lismom
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I don't have a clear cut answer for you only to say that we are treating for bartonella first, with a combo of meds that treats lyme same time as well. I have seen my sons tics go from really bad to mild and non existent throughout our last 3 months. I personally think keeping the bacteria in the gut in imperative as well. I was told that Bartonella is the hardest and the longest to go. Does your son have the dark stetch marks on back or torso? have you tested for it? sounds like a change is due.

 

Also, I have seen that a toxic back up make the tics worse as well. kathy

 

Fixit- Thanks for the hug :)

 

Lismom-

 

Would you mind sharing what antibiotics you have used to treat bartonella? We do high dose probiotics and 1/4 cup of bentonite clay daily, glutathione cream and epsom salt baths... what do you use for detox?

The rashes were dotted lines and spots on my sons lower back and near his under arms... they were not stretch marks but some did resemble scratch marks that did not blanch out with pressure?

 

Thanks for sharing!

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As you know TICs can take a long time to resolve....... some going on 9 months of Lyme treatment. For others, tics have resolved in the first 16 weeks when treating babesia. Its truly a case by case situation.

 

All emotions a side. I would be curious to see where this little flair heads prior to starting anything new. This may sound a little crazy but I've experienced so many flair's of TICs and then sudden improvement. I think I'd hang in there until school is out. If nothing improves by then I would hit the Babesia hard when you can watch him closely. No big demands with school. From experience the first to weeks of treatment for babesia were very difficult on me. I am not even up to my full strength of protocol.

 

When you start treating Babesia you will get cross over treatment for Bartonella and he should become more symptomatic if its there. You might see the rashes again, you might notice some anxiety, we had pacing and inability to sit still, etc.

 

Which way is your Dr. leaning waiting or proceeding?

 

-Wendy

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As you know TICs can take a long time to resolve....... some going on 9 months of Lyme treatment. For others, tics have resolved in the first 16 weeks when treating babesia. Its truly a case by case situation.

 

All emotions a side. I would be curious to see where this little flair heads prior to starting anything new. This may sound a little crazy but I've experienced so many flair's of TICs and then sudden improvement. I think I'd hang in there until school is out. If nothing improves by then I would hit the Babesia hard when you can watch him closely. No big demands with school. From experience the first to weeks of treatment for babesia were very difficult on me. I am not even up to my full strength of protocol.

 

When you start treating Babesia you will get cross over treatment for Bartonella and he should become more symptomatic if its there. You might see the rashes again, you might notice some anxiety, we had pacing and inability to sit still, etc.

 

Which way is your Dr. leaning waiting or proceeding?

 

-Wendy

 

 

Thanks Wendy.

 

Dr is not leaning in either direction and says to stay the course a full 6 months or switch now to treating babesia are both reasonable approaches. We choose to stay the course because of exactly what you wrote about finishing off the school year and changing in the summer time when I can have a closer eye on him. I was only doubting this decision this morning because the tics are ramping up and more importantly he was asking for help. I hope this flair will lead to improvement and I don't think its crazy because I have seen it before :) Thanks again for the words of wisdom!

 

 

 

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I know the feeling of watching the tics flare and the discomfort it brings. That being said, from what you described it sure sounds like he has babesia. For us, the bartonella is definitely the worst offender right now, we're doing babesia after. There are quite a few combo meds. We are sort of following an order of them. We recently switched on advice from new LLMD that targets the arthritic aspect to my son's symptoms. Just started this last Sunday. I was told minimun of 6 months for Bart, probably more. Your detox is the same, but what are you using for liver? Glutathione is good, also using lemons, curcumin. I just started chlorella for neurotoxins. Kathy

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I know the feeling of watching the tics flare and the discomfort it brings. That being said, from what you described it sure sounds like he has babesia. For us, the bartonella is definitely the worst offender right now, we're doing babesia after. There are quite a few combo meds. We are sort of following an order of them. We recently switched on advice from new LLMD that targets the arthritic aspect to my son's symptoms. Just started this last Sunday. I was told minimun of 6 months for Bart, probably more. Your detox is the same, but what are you using for liver? Glutathione is good, also using lemons, curcumin. I just started chlorella for neurotoxins. Kathy

I just saw SF's post about flairs. We see this every 5th week. And yes, it lasts about six days! Finally noticed this the last 2 months.

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  • 2 years later...

I am SO new to all of this. My DS9 was diagnosed with PANDAS in February. He has tics, sep anxiety, anxiety, oppositional defiance, mood swings, anger, ADD, sleep issues, sensory issues,and the list goes on.

Today we got his results of blood work- not that I really understand what any of it means.

But he has co-infection Babesia Duncani which is high 1/1024.

His Lyme was 1 band non specific positive.

And his Vitamin D was at 17 which is really low.

Can anyone explain what this exactly means?

 

My strep was at 400- I am the carrier of strep :( SO does that mean that I am the reason for his tics coming back?

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My son has vocal tics but they are pretty well controlled until his scalp gets over stimulated. He uses a mediction called Intuniv. It is a prescription prescribed by a neurologist. My son has trouble with serotinon and dopaimine levels in the brain and this medication helps regulate those neurotransmitters. Chronic illnesses mess up so many things in the body. So it is possible that your new symptoms have incresed your son's symptoms. I have tried a few natural supplements for tics but have found that this medication offered the most relief in the least amount of time. BTW there is a post on natural things to try for tics. It under the helpful ideals post at the beginning of this forum or the fourm on touretts and tics.

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My son's treatment from his ILADS doc covers Lyme,Bart, babesia and viruses all at one time. I don't understand why some docs feel they have to rotate what they treat. Son's treatment is intensive and has overlapping which is good. For example, plaquenil can work on babesia and help in other ways. You may want to investigate adding Artemesia to babesia treatment at some point. My boys hated mepron so they re doing malarone.

Good luck.

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