Betty04

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!

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!

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.

I second the wondering if she should be on IV antibiotics? Hoping she starts to improve more soon!

Our LLMD told me about the relationship between Bartonella and vascular lesions. I have not seen anything in writing about it though. Tried to do some searching about it tonight and I see some articles but I can't get any open for some reason. We don't have huge indicators of co-infections but my headaches and also my VEGF results, along with dd's hemangiomas was leading her to watch us for Bartonella. Susan I have seen something in writing, but can't remember where. I checked Dr. J's website and one other...but can't find it. If I come across something I will post. I remember, because dd has a large birthmark on her leg, and though not the same, it sparked an interest. Thanks Susan and Philamom, I'll keep looking too and will keep his hemangioma on the list of potential clues for co-infections.

Susan, Do you know of any references for the relationship between co-infections and hemangomias? My son has a rather large one that is still present at age 6 and we are still questioning the presence of co-infections? Any co-infections in particular associated with hemangomias? Thanks for any info!

Fixit- Your inbox is full again

We used Clindamycin for my son and at the time it was very helpful. There are 75mg capsules available if you think 2 small pills is better than one large one. We used to dose the probiotics in between the 2nd and 3rd doses. Maybe you can give the culterelle at around 5:30pm and then push the last Clindamycin to right before bedtime? Also you can give S.boulardi near the time of antibiotics and is a good choice to help lower the c-diff risk that comes with Clindamycin. HTH

Just found this video on cnn.com and thought it was very interesting and potentially the future for Lyme, PANDAS or other chronic infections. http://cnn.com/video/?/video/tech/2011/01/27/dnt.feyerick.fighting.bugs.cnn

Thanks for posting that... I always tell my husband, Stop kissing the dog FYI I think your inbox is full, I can't PM you.

Thanks for posting this. I think this is very interesting as it may be one explanation of why vocal tics exist in kids with Lyme.

Fixit, Don't know if this is helpful to you but my son was already on Azith when we did the dot blot and the llmd just added alinia and ceftin on for the testing. So starting azith will not affect doing the dot blot.

We just did the urine dot blot under the guidance of a LLMD. My son is 5 and was prescribed Azith, Alinia and Ceftin for 5 days with urine collections on days 2,4,and 6. His samples were negative on days 2 and 4 but positive on day 6. This was considered positive for Lyme by 2 LLMDs for my son. Prior to seeing a LLMD, my DAN was going to run this test with only one day for urine collection and only on one antibiotic, so I would advise doing this with the guidance of a LLMD as both doctors said it was not uncommon to only have one sample positive. PM me if you want more information.

My llmd says that it is not normal for a five year old to have growing pains. Sounds like a herx reaction to me. You can get new symptoms during a herx or old symptoms can resurface. It varies from person to person. Foot pain can be bartonella, in particular the soles of the feet. Lyme joint pain is there one minute, gone the next. When I had it it felt like it was surfing through my body. I'd feel a sharp pain in my shoulder, then I'd feel it in my finger and then later in my hip. I will never forget standing in the grocery store once and feeling an incredibly sharp pain in my shin that lasted a minute or two and then disappeared. It was the lyme and all these pains went away with treatment. Well your description certainly matches my sons. It seems very distinct, brief, intense and then gone. I will discuss thyself with my doc at our next consult. Thanks again!

Thanks for the response. Yes we tested twice for all coinfections and they were all negative. Though my son has been on so many antibiotics I think it's nearly impossible to get a positive. He is only 5 and I don't see a psychological component as there has been no secondary gain. I was curious what causes brief,intense pain and it sounds like Lyme and bartonella do. It is hard to know what to make of this in a 5 year old?

My 5 year old has never complained of any joint pains. He was on rifampin briefly but discontinued due to increased tics and loose stools. He was then switched to vancomycin. He started complaining of pain in one knee on Rifampin and on vancomycin he has complained of knee pain, each one at different times, and foot pain. He limps and started to refuse to walk in the store today bc of the pain. But these pains typically resolve in less than a minute to sometimes longer. They seem to be happening in increasing frequency as we are almost 2 weeks into starting vancomycin. Is this strep, c-diff, Lyme (though we have recently gotten another negative igenex)??? What causes such brief, sudden pain? Any thought are grately appreciated!

Thanks caring mom for the response. I think we need some yeast treatment as well. I really appreciate you sharing your experiences and so happy to hear your daughter is doing well and hope this is just the beginning of health for her!

Caring mom, How long did it take for the flagyl to improve your dd's tics? Did it ever make them worse? Thanks, Betty

Chemar, Thank you again for sharing your experiences. That was very helpful in making some sense of things for my son!

Chemar, Thanks for the response. I am really struggling with my son currently. His stools and tics responded so well to clindamycin in July. Then it seemed to stop working so flagyl was added and his tics worsened so we stopped after 10 days. Tics began to improve but then he started school and caught a cold. We added Rifampin to the clindamycin and again tics worsened. My doc pulled him off all antibiotics for the weekend and then we started vancomycin. His tics have worsened on all these antibiotics. He had a horrible anal rash that my doc said was the strep coming out. But the rash is now gone, we are 10 days into vancomycin. My doc said typically takes 2 weeks of increased tics before things settle. But it is hard waiting this out and questioning what is best? He is only 5 but tested negative to ibd markers but has a c3d of 91! Sorry maybe this post belongs more on the pandas board but I am just struggling with why he gets worse on antibiotics and does that mean pandas or can that happen to someone with ts? Well it obviously happen to your son with ts, but I think he has ibs or chrohns so it that why flagyl made him worse or could it make anyone with ts worse? Thanks again for sharing your experiences.

Chemar, Did your son's tics increase on Flagyl or was it another negative reaction? Thanks.

Fixit, First let me say that we are first starting down the vancomycin road to treat my son's gut. His tics have skyrocketed since we began. He also had a horrible anal rash that my doc said was the strep coming out. My doc says he will probably be worse for about 2 weeks. My son just started the Vancomycin last week so we are on the treatment dose. The plan is to stay at a treatment dose for one month and then taper by 25mg per week until he is entirely off. We have a consult next week so I will have more details then and gladly share if you want. Just wanted to mention that my son is 5 and weighs 40 lbs and is on 250 mg twice daily. Your dose seems low in comparison? I hope things get better soon. For what it's worth, my son has a T & A before his third birthday and I am so glad we did it! Take care.

Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts do you have more info on how your doc tapers vanco..??? it just seems weird how it has worked 3 times already... But i am getting gun shy as i don't want there to be a resistance... the dose in front of me is 125 mg 3x a day for 2 weeks... how would that be adjusted to a taper.... even though i think my heart is going to pond through my chest.... i can't in my mind start it as (double knock, knock)when we have the T&A on friday, if i need a steroid i will end up in the cycle for needing vanco AGAIN!!

Fixit- I hope the consult offers some relief. I am not sure this is helpful but my dan doc told me that if vancomycin is helpful then you never want to just stop it bc you will likely relapse. Vancomycin needs to be slowly tapered off - my doc tapers the full treatment dose slowly down over several months. Hope today get better! Greeat does codeine knock you out?? we are leaving now for consult...he is trying to hold them in.... the other sound to cover is a cough at the back of the throat.... this poor kid...i will need to get something to sedate him for a few days... welcome any other thoughts