[Anyone here with toddlers with Lyme?]

From what I understand about the symptoms of Bartonella, YES, YES, YES, it is definitely a clear case. My understanding is that PANDAS and Bartonella present similarlly in terms of psychiatric symptoms? Or at least that is how it feels in this house. So, when the test came back positive, I rejoiced.

 

Now, I'm still waiting on my own test results. I've already been tested for Lyme at some point and it was negative. it wasn't through Igenex, but I don't know what the test was. Just remember a negative does not mean a negative. What is your doc saying about your child?

 

He's diagnosed with Pandas, all the classic symptoms, tested positive for Lyme through Igenex, at least had it for a year. but we're also dealing with bursts of agression and rage!, irritablity, inability to focus, more neuro symptoms that one doc thought be more Bartonella related. He's on 200 of Azithro and 500 of omnicef. Are your daughter's? doses higher? He's 45 lbs. He's only been on the Lyme treatment for 3 weeks though. His aggression is so unpreditable. Just took him to PreK to drop off his brother and he got angry over nothing and threw a snow boot at the wall (in front of 3 teachers). i was mortified! 2 minutes later he was chatting nicely with all of them and laughing!

[Anyone here with toddlers with Lyme?]

Was it a clear case of Bartonella? Doc is wondering about Bartonella with our 4 yr old but I'm told it's hard to diagnose. He was negative on Igenex test.

But has more behavioral, neurosymptoms going on than physical ones.

 

Wendy - didn't realize your twins were so young, 1 year behind us

[Anyone here with toddlers with Lyme?]

Just wondering if there's anyone on the forum that have toddlers with Lyme? My son is 4. Has had it at least since 3.

 

darlene

[Aggression in PANDAS?]

Just wondering. Dr. B had said if aggression continues into say May, we may be looking more at Lyme or Bartonella as the cause, not necessarily PANDAS. I guess the cause doesn't matter much...just fixin it!!

[Lyme Articles]

Thanks for posting. would love to read.

[Aggression in PANDAS?]

Can anyone please remind me, I've been over on the Lyme board. Can you get bursts of aggression with PANDAS? Is that not a typical symptom? My ds4 has bursts of aggression (although not always with anger), may just play really rough with toys, crashing and smashing them.

 

thanks.

[Intersted news video on Lyme stories]

SF Mom suggested I share this link on the Pandas forum. (it's posted on Lyme as well). It's a great tv news segment (from Canada) about Lyme and includes children's stories. Click on the links on the right side of page. (out of the wild) 2 part video series.

 

http://www.ctv.ca/CT...w5_lyme_091114/

 

darlene

[Interesting Video stories from Canadian News]

Thank you for sharing this. It was good for my older son to see so he could understand what his younger brother is going through. Best wishes on recovery.

 

Glad it was helpful. I thought it was so well done and fair. Look forward to working with Josh.

[Interesting Video stories from Canadian News]

Just wanted to share.... A great news video (2 parts) to watch produced by Canadian TV. Wish they had something like this in the US. Have yet to see something comparable. First video covers 2 children with Lyme. Worth watching for everyone.

 

http://www.ctv.ca/CTVNews/WFive/20091113/w5_lyme_091114/

 

Out of the wild: part 1 and 2

 

darlene

[I just don't know what to do anymore]

Kara,

 

So sorry to hear how rough things are now. Igenex takes about 10 days for results. The LLMDs typically have a wait. Maybe Dr. B would add a 2nd antibiotic while your waiting for the results. It couldn't hurt to see if she responds. I believe that would be the LLMDs next step anyways if she tested positive. Once Colin came back with positive Lyme, he started zithro. that alone didn't seem to help and the LLMD added in Omnicef, which seems to be helping. He too was having rages and aggression along with other behavioral symptoms. It decreased substantially with the 2nd antibiotic. Just a thought. Hang in there.

 

darlene

[Any graphic designers out there?]

Hi there,

 

If there's any graphic designers out there interested in helping our awareness campaign could you please PM me? We're looking for someone able to design a logo for Children's Lyme Disease Association. (a new group). It would be printed on media releases. thanks, thanks much.

 

darlene

[Lyme Awareness Month-we need your help]

Mati'sMom - your box is full.

 

Hi Matismom,

 

Just wondering if your son presented with Lyme with neuropsych/behavioral symptoms? How long has he had it do you believe? And is he seeing an LLMD in VA? How is the treatment going?

 

Whenever you're free, can you respond to darlenemcmahon@frontiernet.net ??

 

Thanks and glad you seem to be on the right path now!

 

darlene

[Is itching a symptom?]

Hi,

Both of my children are being treated for lyme by Dr. Jones in Ct. I was wondering did anyone after beginning treatment start to be itchy? It does not seem like it is a reaction to the medication as there are no hives. They say they are itching on the chest area and it may look slightly red under the skin but nothing has surfaced. I'm just wondering anyone have any ideas or suggestions? Oh and by sons ocd and behavior is off the wall and he can't sleep, disturbs me all night.

 

 

Thanks,

Tami

 

Tami,

 

My son complained of itchiness all over, no redness, after starting combo abx. went away after a few days. he could function though. didn't seem to bother him too much. Can't recall your situation, did your son present with OCD as Lyme symptoms or did he have physical symptojs as well? what state are you in?

 

darlene

[Anyone seeing Dr. B in CT 3/7?]

anyone around that day? would love to meet some others in our situation. we'll be at the doubletree.

 

darlene

[Raspy Voice - abx side effect?]

Kristie,

Did you get the email from my personal account? was having trouble with it. Did Beals say anything about the voice issue?

 

vickie,

He takes the liquid. But the raspiness seems to be disappearing, right along with the blinking/grunting tic. Maybe it was herxing.

By the way, are you dealing with Lyme as well...I thought just Pandas?

 

darlene

[Raspy Voice - abx side effect?]

Dr. B's office thought it could be from all the grunting/throat clearing tic that he's had for the past 2 weeks. He's stopped that tic (for now), so we're going to see if his voice clears up as well. Such a guessing game!!

[Advice on how to treat Lyme economically]

Not sure what they can offer. But there's LymeAid4kids. I believe it's through the LDA website.

[good multi vitamin for lyme kids]

I read in Dr. Burrascano's paper about Life Pack multivitamins. Available through Pharmanex. But not sure if they have them for children.

[Tindamax days are the BEST days!]

Our ds4 had was herxing on the plane ride back from Florida. Once we made it into the airport, I literally went to the corner and cried! I was exhausted. 3 hours on the plane with non-stop movement, over chairs, under chairs, talking loud, yelling about the noise of the engines, kicking anyone who would try to calm him down...it was interesting! AND, the pilot invited him to the cockpit. God, was I a wreck. He didn't know who he was dealing with.

 

My advice: NEVER change meds while on vacation.

[update on igenex]

For those of you who have been following my desperate posts from time to time and decline in my children's behaviors even after 2 IVIG's and a handful of different antibiotics well... to my disbelief my daughter has tested positive on igenex iGM results. A positive result suggests exposure to B burgdorferi.

**31kDa +

**41 kDa +

**83-93 kDa +

 

Igenex IGG negative

30 kDa +

**39 kDa IND

**41 kDa ++

 

Can anyone explain these numbers?

 

co-infections negative

 

 

My sons results were all negative but he will be treated for bartonella he will be taking azithromycin, omnicef, rimfampin, and 8 days tindanax I hope I got those right. My daughter will be put on same meds but hasn't seen Dr. J we will have to wait till MAY. only + is for 41 and 58 ++

 

Thanks for any input,

Tami

 

Tami,

 

I'm over on the Lyme board mostly now. But my ds4 diagnosed Pandas initially then to my surprise and Dr. B's he tested positive at Igenex for Lyme. Basically, if you have positive 31 that's Lyme specific, so he definetly has it AND he's had it for at least one year. 41 is another band that indicates a definete LD. You may want to post on the Lyme board and you'll get a lot more experienced mom's giving you advice.

 

darlene

[Anyone see Dr. Horowitz in Hyde Park,nY?]

Can you please PM me if you'e had any experience with Dr. Horowitz in Hyde Park, NY?

 

thanks.

[Need help with vitamins]

Our LLMD suggested adding ds4 vitamins. Anyone suggest where to get them or brands? He's only 4, so I'm looking for liquids and they seem pretty high doses.

 

Vitamin D, 1800 IU

Magnesium, 130 mg

Omega 3 (400-1000 mg)

CoQ10 - 100 mg.

 

He takes Culturelle but not sure if it's enough dosage.

 

thanks for any guidance!

We order vitamins (liquid) from Youngevity.com The vits are excellent and have heard the owner speak a couple of times. The site is a bit flashy and somewhat difficult to navigate but the products are all really good.

Thanks. I'll check it out.

[Raspy Voice - abx side effect?]

Has anyone experienced a raspy voice (sounds like he's getting laryingitis) with their child? ds is on azithro and cedfnir. Can't imagine him having strep with all those antibiotics? Symptoms also appear a bit worse, along with the voice change.

 

thanks for sharing.

 

darlene

[Need help with vitamins]

Our LLMD suggested adding ds4 vitamins. Anyone suggest where to get them or brands? He's only 4, so I'm looking for liquids and they seem pretty high doses.

 

Vitamin D, 1800 IU

Magnesium, 130 mg

Omega 3 (400-1000 mg)

CoQ10 - 100 mg.

 

He takes Culturelle but not sure if it's enough dosage.

 

thanks for any guidance!

[More herxing from Tindamax]

Kristy,

 

Can't give any advice but hope you feel better soon.