My son is suffering

My 7 year old son was diagnosed with Bartonella after 7 months of hell. We believe he was infected by a tick at the age of 3. He was hospitalized with cellulousis in the shoulder and they could never figure out where it started or how. I believe this was the intial poin tof the infection. Going undiagnosed for so long, my son became that child that every parent fears.. He became angry and throwing tantrums that became more and more explosive. His personality went from a fun loving boy to a boy who would snap at any moment and become violent. People blamed me of course, by not being strong enough or not knowing how to be a parent, I was too soft on him. ( I also am an Elementary Ed teacher and have a specialization in Special Ed and Behavioral Issues. ) After being turned away from boston's Children's Hospital, and various other hospitals or docters we have finally found a DR in NH that knows what he is doing it appears. My son was committed to the state hospital for Chidlren for almost 6 days because no one believed that there was anything wrong. We have been treating him since January with A-L Byron White herbs, A-Bart, 5HTP, L-Theanine, and azthyromycin. His cd 57 counts are still dropping dramatically and we are now adding Bactrum 2x a day to all of the above. Is here anyone else out there that has any ideas or suggestions,?? We no longer have to restrain him, and he nowhas furniture in his room again. Has anyone else had anything like this...Just looking for some support~ I think that sometimes this is much harder on me than it is on him..

I'm so sorry! Having your young boy have it must be a total nightmare. It sounds like he is on the right track. I, too, am in Boston and have gotten the worst treatment here. Go figure!! I had to go to a doctor in DC to get help. I also have Bartonella and while I haven't (luckily) had too many issues with major rages but looking back, I see my reactions during certain times bordered on full-on rage. But at any rate, it certainly is a symptom of Bartonella. Bartonella is a hard disease to get rid of, one of the hardest, in fact. But you can (!!) get rid of it. I just started A-Bart and MC-Proto-z because I wasn't tolerating abx. I'm also on a ton of supplements. I read somewhere that you can loosely gauge treatment time by giving 3 mos. of treatment for every year of infection. But, as I said, Bartonella is a tough one to eradicate. Are you doing detoxing rituals? If not, you need to start as that will help IMMENSELY with healing. Are you watching his diet, etc?? That too will also help. Try not to get too discouraged! You are finally on the right path and you will get there. Unfortunately, you have to take a baby-steps approach to this. THere is no quick fix. You can look on Dr. B's website, I believe it's called healinglyme.com, but at any rate, he lists symptoms and what herb you can take to alleviate it and I'm sure he lists some for neurological symptoms. Hope this helps! You WILL get thru this!!!

I'm so sorry your son is going through this!!!!

Our naturopath suggested doing/taking things that protect the brain and nerves like lots of omega 3s and detoxing. I'm not well educated on this stuff so I don't have a lot to offer....

How is his diet? Does he stay away from processed sugars and dyes? They can cause a lot of behavior issues on their own, let alone with this infection.

Now that you are getting help, I hope that his symptoms improve and you regain your child. Have faith and stay strong.

Lymemomma,
First of all, I'm so very sorry to hear that you are going through this with your son! It's got to be one of the hardest things to watch your own child go through. I've been very lucky that my now adult children didn't end up with congenital Lyme, but my Mom has had to watch me suffer for many, many years now. My heart goes out to you!

The suggestions that have been given are good ones in my opinion!! I do hope you will consider them. Detoxing will only help, as it's the toxins from the bacteria that are driving our symptoms. www.encognitive.com/node/5768

If you haven't already, may I suggest that you read through our "New to Lyme? Start Here!" thread? It's full of really important information and articles, as well as informative links, symptom lists and more.

Next, although I don't want to chase you away from this forum where you can get some really great support(!!), I would suggest that you check into two other sites. One, Dr. Charles Jones' site (www.drjoneskids.com/), as he is a Pediatrician who has treated numerous children with severe symptoms due to these infections.

The other site I think you would benefit from reading through would be Dr. James Schaller's. He has researched Bartonella (along with the other tick-borne infections) and has written several books, although before rushing out to buy his books I would suggest that you just 'google' "Dr. James Schaller, Bartonella" and read all the articles about it first. Otherwise, his site offers a lot of information. www.personalconsult.com/

I encourage you to read all that you can with your busy schedule (my Mom and Aunt were teachers for most of there working lives) as the more you know the better you will be able to help your son.

The bit of good news that I have is that most children, when given the things their little bodies need to heal, will heal quite well! So at the end of all of this, you will likely have your sweet boy back!!

Please let us know how things are going - when you have time of course - and if there are any questions, suggestions, or any help that we can give!!

I pray for a smooth healing path for your son.

Lymemomma, Howdy neighbor.

I'm in southern Maine. I'm sorry to hear about your son. It's bad enough when adults get the Doctors run around, but it infuriates me to know that children are suffering even more than necessary because this country won't accept these infections as very real! My 8 year old son has Lyme, and is on natural meds and he just started back up on prescription abx.

I have bartonella as well as lyme and that was my first symptom(extreme anger) about a year ago that got this all started. I'm on all naturals now because of the side effects of the prescription abx. That A-L complex has been great. I went from 5 drops twice a day to 10 drops twice a day and that is when I had my first herx experience about a month ago. Very powerful stuff.

Another natural supplement that has been great for me is Rhodiola Rosea. It is great for overall brain function, and as soon as I started taking that, I went back to my normal "happy go lucky" self. I have no idea if it is recommended for kids or not, but, maybe you can research that and let us know.

Brandan and I are doing much better now and we still have a ways to go, but I would have to say that patience is one of our best allies.

Are you guys giving your son detox baths?

Good luck and keep us informed of your boys progress, Dan

Hi lymemomma - I wish I could give you a virtual hug to help with all you're going through - of course your number one concern is your son's well-being, but of course this can't be easy for you, either! Having been a child with lyme disease, I can definitely appreciate the plight of a parent trying to help their child - it sounds like you're doing a wonderful job looking out for him - he's lucky to have you!

I think the website Shabbychic was referring to is www.buhnerhealinglyme.com - there's a great lyme protocol there, and also a good amount of information about bartonella. If you're looking for things to boost the CD57 - cat's claw/samento is a really great lyme herb, and I believe it works specifically on that.

Hang in there - we're all here to help however we can!

Hi Lymemomma, I just saw your post from a few years ago and wanted to see if your son improved. My son (5) is having rages as well where is body just gets out of control for seemingly no reason. The other day he forgot his water bottle at school and just went into a 40 minute tantrum in the car, screaming, hitting, biting me, etc. It's been horrible. He just snaps over the littlest things. He's been like this for about 3 years now and I can't tell if some of it is something like Aspbergers or pure Lyme. He was bitten with infected ticks four times in the last year. We're in a terrible Lyme area so I'm wondering if he was bitten earlier in his life and I just didn't realize.

In any case, I'm finding myself in the same situation you were three years ago (and hopefully, fingers crossed, you are no longer experiencing!). Do you have any advice for me? He was on abx for 6 weeks for the last infection and noticed an immediate decline in his behavior after his 6 week dose of ceftin, doc thinks Lyme isn't out of his system. He was an angel on the medication...a totally different kid: calm, patient, loving, and totally able to regulate. Off meds, unable to concentrate, explosive, and just sooooo hard to handle. He's now back on ceftin and has just started alinia. I'm thinking his current rages are herx reactions, but they seem to be more pronounced this time. I'm worried!

I am also a (former) elementary school teacher and have been devastated with how hard our journey has been. I get comments all the time like you have, how I'm not disciplining hard enough, etc. Would love any help you could give. Thanks!!

Our daughter had similar symptoms and healed with bartonella and babesia treatment. Here is her timeline:

DD13 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.

2004 - Dx ADHD, SPD (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.

2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.

Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.

June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.

Sept 2013 - CD57 45.

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.

Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%