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3 year old/reactive band 23


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Hi all,

We have had a long journey with my son since he was about 16 months old. At that time is when we started with chronic (i mean CHRONIC sinus infection) We have been through Autism Dx, Pandas DX, seen immunologist, neurologist, Dan dr.s, Ophthalmologist, ect. And Now a "negative" WB result. Well, more like Positive result. band 23 IGm and band 41 Igg.

 

My son is now 3.5 years old. His longest and strongest dose of ABX was a few months ago a one month dose of Augmentin from Dr. K in Chicago. We saw huge improvements with his anxiety, and OCD behaviors, but we still have many road blocks.

 

A few questions....Can Lyme disease in a young child mimic autism. Although my son doesn't have the Classic autism (he is very connected, social, ect.) He has a lot of rage,anxiety, sensory issues, especially sound and touch, irritability, aggression, and most of all chronic infections.

 

How does a child so young get Lyme? Should my whole household be tested? My oldest DD (5.5 now) always cried/cries about leg pain, Even when she was a toddler I just never believed it was growing pains. She has many sensory issues, really bumpy skin, grinds teeth, super sensitive to noise, never slept well. Is this something they can get from me??? My middle DD (4.5) is quite neurotypical. I just started to question if maybe she was lucky that I had strep B when I was pregnant and the IV abx I got during labor helped her out in some way!?

 

With one band Reactive and specific to Lyme, will a LLMD take one band seriously? I want to make an appt. but also don't want to go for nothing.

 

Are there alternative Antibiotics other then Oral? The one month dose of Augmentin literally tore my sons insides apart, even while on strong probiotics for a long time prior to abx use. Anyone have alternatives? Or injectable abx?

 

My husband is convinced Lyme is DEFINITELY NOT a factor, the CDC says NEGATIVE. I don't know what I can do , say, or show him to make him really trust what i'm saying. Any tips to make one believe or think outside the box would be great also.

 

TIA

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A few questions....Can Lyme disease in a young child mimic autism. Although my son doesn't have the Classic autism (he is very connected, social, ect.) He has a lot of rage,anxiety, sensory issues, especially sound and touch, irritability, aggression, and most of all chronic infections.

 

How does a child so young get Lyme? Should my whole household be tested? My oldest DD (5.5 now) always cried/cries about leg pain, Even when she was a toddler I just never believed it was growing pains. She has many sensory issues, really bumpy skin, grinds teeth, super sensitive to noise, never slept well. Is this something they can get from me??? My middle DD (4.5) is quite neurotypical. I just started to question if maybe she was lucky that I had strep B when I was pregnant and the IV abx I got during labor helped her out in some way!?

 

With one band Reactive and specific to Lyme, will a LLMD take one band seriously? I want to make an appt. but also don't want to go for nothing.

 

TIA

 

Hello, your younger children sound very much like mine were.

 

My children got lyme from me during childbirth or through breastmilk. I did not know I (we) had it until 2 years ago. They had issues from around 12 months old and we have had sensory processing dx, pandas, spectrum disorder, gluten intolerance.

 

A LLMD will take the positive bands to heart and can give a clinical diagnosis if needed. My dd10 had negative tests at first and after 3 months of lyme treatment got a positive test. She had pain like your dd and sounds like her in all other ways you mention. My other dd had many conditions found with autism and sounds similar to your son. I believe there is a strong connection between autism and lyme.

 

Both my children are doing very well now after almost 2 years of lyme treatment. My youngest dd9 especially is doing great after addressing her lyme and also methylation pathway issues. DD10 is currently struggling because she just had strep and the flu but hoping she will continue to improve back to how she was doing.

 

I hope you do make an appt with an LLMD and that your dh will open to the possibility so you won't have any road blocks to finding out exactly what is going on. Searching for what was going on with my children helped diagnose myself.

 

Was your WB through Igenex Lab?

 

Susan

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My DD10 has what our LLMD thinks is congenital lyme (and I thought my symptoms were old age setting in) along with bartonella that I think she acquired from a bite with a non-EM rash in 2008. One week after that bite she began having motor/vocal ticcing which at first was exacerbated by strep infections but then with viral infections as well. Two years after the bite she developed what I now understand to be the pain symptoms of bartonella - shin and forearm pain, pain on the bottom of the feet, pick-like headaches. Along with this she developed chronic fatigue (sleeping every afternoon while most kids are playing outside, having to sit at the top of stairs after going up), an inability to sleep at night (I would find her reading at 2am), frequent urination, cyclic IBS symptoms that I could not associate with food intake (I kept many food charts and tried many elimination diets - salicylate, oxalate, feingold, GFCF etc). She was positive for ANA so the pediatrician was investigating lupus.

 

She has been Dx by the pediatric psychologist with ADHD, inability to properly filter incoming stimuli (sound, touch, light), motor delay, motor/vocal tic disorder, aspergers and PITAND/PANDAS reactions to bacterial/viral infections. She lost her speech 2 weeks after her 15 month MMR. We also saw a decline in fine motor function and ability to interact socially at that time.

 

She taught herself to read at 2 years of age by following my finger on the page as I read books to her (she was non-verbal at the time). She took piano lessons for 2 years before we realized that she could not read the notes, but was memorizing the teachers hand positions on the piano. When we tried to go back to re-teach notes she became very frustrated and flew into rages. She was not toilet trained until 6, and took private speech therapy until 7 to regain her speech. She had almost non-existant executive function, and would lose herself in books all day long, or drawing the same stick figure of a girl with a skirt 50 times a day. I had to organize everything for her, brush her teeth, pick out her clothes and put her into them, she had to eat lunch in the special ed classroom so they could remind her to eat.

 

She is now being treated for lyme/bart (biaxin/rifampin/pulsed tindamax) by an LLMD in NY. Not to jinx myself, DD10 is now 90% neurotypical (she has friends!), her motor/vocal tics have resolved, she brushes her own teeth, ties her own shoes, organizes her desk at school, makes her bed and sets the table without me asking. She gets herself up in the morning and brings her first supplements to me. She sleeps like a rock. She still does about 1/3 of her school work at home because she is still somewhat distracted at school, but she is making A's.

 

My husband was also skeptical but I went ahead and had DD diagnosed by a LLMD. DH isn't skeptical anymore with the gains she has made. DD's ELISA was negative, but she did come back positive for bartonella and indeterminate (IND - that means the bands are showing up, but not strongly - I think the CDC just counts IND as negative) for lyme with the Igenex western blot. Igenex tests for some lyme specific bands that the other tests don't. Most LLMDs will accept an indeterminate band as positive, but even if the tests do not come back positive, the LLMD will treat on clinical symptoms alone. These infections supress the immune system to such an extent that antibody tests will often come back negative. After treatment for some time there is often a seroconversion and the further testing will be positive.

 

This is an interesting video that has been posted here a couple of times I think. Cases of autism in France being treated with ABX and showing great improvement.

 

Edited by rowingmom
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Wow Susan, I can't believe how similar these stories are.

I have had this gut feeling for some time, that Lyme could be an issue, even though I knew it wasn't from an actual tick, and no signs present, it was just a mother gut thing.

We haven't used Igenex yet. I got these results from blood work that Dr.Trifletti took for my sons pandas symptoms. Of course, I have strep currently and my son even though he had strep titers 7 months ago has NO strep titers now. Everything else came back normal, and according to Dr.T so did his Lyme. However when I read over the lab work, I found the reactive band 23 IgM and the Reactive band 41 IgG.

 

I know the Band 41 is common and not specific to Lyme but the band 23, and the fact that this was NOT igenex labs, Makes me even MORE worry some on what else its NOT picking up on.

 

We are also testing for heavy metals in a few weeks through Chelation, and that is our next route...however I feel like I need to address this Lyme first. I know it is an issue, and without a doubt, and issue for all of us.

 

Thanks for weighing in. Anymore insight would be greatly appreciated.

 

Bailey

 

 

Hello, your younger children sound very much like mine were.

 

My children got lyme from me during childbirth or through breastmilk. I did not know I (we) had it until 2 years ago. They had issues from around 12 months old and we have had sensory processing dx, pandas, spectrum disorder, gluten intolerance.

 

A LLMD will take the positive bands to heart and can give a clinical diagnosis if needed. My dd10 had negative tests at first and after 3 months of lyme treatment got a positive test. She had pain like your dd and sounds like her in all other ways you mention. My other dd had many conditions found with autism and sounds similar to your son. I believe there is a strong connection between autism and lyme.

 

Both my children are doing very well now after almost 2 years of lyme treatment. My youngest dd9 especially is doing great after addressing her lyme and also methylation pathway issues. DD10 is currently struggling because she just had strep and the flu but hoping she will continue to improve back to how she was doing.

 

I hope you do make an appt with an LLMD and that your dh will open to the possibility so you won't have any road blocks to finding out exactly what is going on. Searching for what was going on with my children helped diagnose myself.

 

Was your WB through Igenex Lab?

 

Susan

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My DD10 has what our LLMD thinks is congenital lyme (and I thought my symptoms were old age setting in) along with bartonella that I think she acquired from a bite with a non-EM rash in 2008. One week after that bite she began having motor/vocal ticcing which at first was exacerbated by strep infections but then with viral infections as well. Two years after the bite she developed what I now understand to be the pain symptoms of bartonella - shin and forearm pain, pain on the bottom of the feet, pick-like headaches. Along with this she developed chronic fatigue (sleeping every afternoon while most kids are playing outside, having to sit at the top of stairs after going up), an inability to sleep at night (I would find her reading at 2am), frequent urination, cyclic IBS symptoms that I could not associate with food intake (I kept many food charts and tried many elimination diets - salicylate, oxalate, feingold, GFCF etc). She was positive for ANA so the pediatrician was investigating lupus.

 

She has been Dx by the pediatric psychologist with ADHD, inability to properly filter incoming stimuli (sound, touch, light), motor delay, motor/vocal tic disorder, aspergers and PITAND/PANDAS reactions to bacterial/viral infections. She lost her speech 2 weeks after her 15 month MMR. We also saw a decline in fine motor function and ability to interact socially at that time.

 

She taught herself to read at 2 years of age by following my finger on the page as I read books to her (she was non-verbal at the time). She took piano lessons for 2 years before we realized that she could not read the notes, but was memorizing the teachers hand positions on the piano. When we tried to go back to re-teach notes she became very frustrated and flew into rages. She was not toilet trained until 6, and took private speech therapy until 7 to regain her speech. She had almost non-existant executive function, and would lose herself in books all day long, or drawing the same stick figure of a girl with a skirt 50 times a day. I had to organize everything for her, brush her teeth, pick out her clothes and put her into them, she had to eat lunch in the special ed classroom so they could remind her to eat.

 

She is now being treated for lyme/bart (biaxin/rifampin/pulsed tindamax) by an LLMD in NY. Not to jinx myself, DD10 is now 90% neurotypical (she has friends!), her motor/vocal tics have resolved, she brushes her own teeth, ties her own shoes, organizes her desk at school, makes her bed and sets the table without me asking. She gets herself up in the morning and brings her first supplements to me. She sleeps like a rock. She still does about 1/3 of her school work at home because she is still somewhat distracted at school, but she is making A's.

 

My husband was also skeptical but I went ahead and had DD diagnosed by a LLMD. DH isn't skeptical anymore with the gains she has made. DD's ELISA was negative, but she did come back positive for bartonella and indeterminate (IND - that means the bands are showing up, but not strongly - I think the CDC just counts IND as negative) for lyme with the Igenex western blot. Igenex tests for some lyme specific bands that the other tests don't. Most LLMDs will accept an indeterminate band as positive, but even if the tests do not come back positive, the LLMD will treat on clinical symptoms alone. These infections supress the immune system to such an extent that antibody tests will often come back negative. After treatment for some time there is often a seroconversion and the further testing will be positive.

 

This is an interesting video that has been posted here a couple of times I think. Cases of autism in France being treated with ABX and showing great improvement.

 

 

 

Wow. How similar all these stories are. Thanks for sharing this video! I had actually seen it a few months back and felt sick while watching it. I had actually watched it during our ABX course Dr.K in Chicago ordered. I had a feeling there was more going on, which led me to Dr. Trifiletti who ordered the bloodwork including the WB. Although Dr T said the lyme was negative I reviewed it and of course Reactive.

 

My son also lost speech after the MMR. He didn't have much before it, but completely stopped vocalizing. He also Memorizes EVERYTHING! He can remember a song after hearing it one time. He went from being non verbal last year and this year says anything, sings anything. Super smart, super bright, just very sick. He has been very sick for a long time. And the sad thing is, he can't tell me if his joints are hurting, if he is nauseous, ect. Who really knows the extent of his illness other then him. He never showed signs of SPD, or ADHD, Aggression ect. until the summer of 2010 after vaccines, and after chronic infections. I just kept getting "oh its a virus" from pediatricians, infectious disease Dr.s and so on.

 

That is so reassuring to hear about your DD. I can't wait to share a similar story in the very near future!

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Here is what I have read, and personally experienced, about a positive band 23, which is a Lyme only bacteria band.

 

I originally did a labcorp western blot on dd. It came back band 23 positive, nothing else, of course CDC negative.

 

I researched and researched. One well known LLMD wrote: See the band 23 positive, it is Lyme.

Another well known LLMD wrote: Typically through labcorp, band 23 will be the one that comes up.

 

I was blown away, shocked, you know the drill. However, I went on to do a full on Igenex testing on her, thinking I'd be very remiss if I didn't follow up.

This came back lit up like a Christmas tree. Then made an appointment with LLMD to get their opinion - gave my dd's whole history, from when an infant (poor muscle tone, sensory issues, etc.)

LLMD said to me: YOU need to be tested.

I came back positive PCR Lyme in my blood, and high positive Bartonella.

 

So, we are both in treatment. I get where your husband is coming from- the reality is hard to grasp, especially when you have no memory or history of pulling off engorged ticks, never remember a bulls eye rash (which only shows up in 50% of the infected, by the way.)

 

But it is really serious. I'd say, please follow through. Sending good thoughts----

Edited by S & S
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Here is what I have read, and personally experienced, about a positive band 23, which is a Lyme only bacteria band.

 

I originally did a labcorp western blot on dd. It came back band 23 positive, nothing else, of course CDC negative.

 

I researched and researched. One well known LLMD wrote: See the band 23 positive, it is Lyme.

Another well known LLMD wrote: Typically through labcorp, band 23 will be the one that comes up.

 

I was blown away, shocked, you know the drill. However, I went on to do a full on Igenex testing on her, thinking I'd be very remiss if I didn't follow up.

This came back lit up like a Christmas tree. Then made an appointment with LLMD to get their opinion - gave my dd's whole history, from when an infant (poor muscle tone, sensory issues, etc.)

LLMD said to me: YOU need to be tested.

I came back positive PCR Lyme in my blood, and high positive Bartonella.

 

So, we are both in treatment. I get where your husband is coming from- the reality is hard to grasp, especially when you have no memory or history of pulling off engorged ticks, never remember a bulls eye rash (which only shows up in 50% of the infected, by the way.)

 

But it is really serious. I'd say, please follow through. Sending good thoughts----

 

Thank you for sharing! This stuff is very scary, but very reassuring that there is an answer. And answer to my sons ups and down, and to his chronic infections.

How is your treatment going? Have you both seen positive outcomes?

My husband will come around! We have made many strides so far, and many times it took lots of convincing and educating! Time for some more!

 

Bailey

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Here is what I have read, and personally experienced, about a positive band 23, which is a Lyme only bacteria band.

 

I originally did a labcorp western blot on dd. It came back band 23 positive, nothing else, of course CDC negative.

 

I researched and researched. One well known LLMD wrote: See the band 23 positive, it is Lyme.

Another well known LLMD wrote: Typically through labcorp, band 23 will be the one that comes up.

 

I was blown away, shocked, you know the drill. However, I went on to do a full on Igenex testing on her, thinking I'd be very remiss if I didn't follow up.

This came back lit up like a Christmas tree. Then made an appointment with LLMD to get their opinion - gave my dd's whole history, from when an infant (poor muscle tone, sensory issues, etc.)

LLMD said to me: YOU need to be tested.

I came back positive PCR Lyme in my blood, and high positive Bartonella.

 

So, we are both in treatment. I get where your husband is coming from- the reality is hard to grasp, especially when you have no memory or history of pulling off engorged ticks, never remember a bulls eye rash (which only shows up in 50% of the infected, by the way.)

 

But it is really serious. I'd say, please follow through. Sending good thoughts----

 

Thank you for sharing! This stuff is very scary, but very reassuring that there is an answer. And answer to my sons ups and down, and to his chronic infections.

How is your treatment going? Have you both seen positive outcomes?

My husband will come around! We have made many strides so far, and many times it took lots of convincing and educating! Time for some more!

 

Bailey

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My husband was skeptical at first, too. I mean, the test did say negative, right? Plus, where we live, we do not visually see ticks-

and, over the years with dd, we had been through so many 'things'

DAN! Dr.'s, tried homeopathy, the whole PANDAS regime with 2 IVIG's, sensory processing disorder OT, many other things and protocols, bio-med, special diets (she was evaluated for autism, they said she was not autistic)

and now here I come saying Lyme disease.

 

I made DH come with dd and I to our first initial appointment with an LLMD, with all our testing for dd in hand, the labcorp, the Igenex (which I was able to get our then DAN! Dr. to sign for, so I already had this test to bring.)

It sunk in for him at that appointment.

Also, I wanted to mention that my daughter never had a severe regressive episode- oh yes, we had some crazy waxing and waning with OCD,

but she never had regressions from vaccines- and as an infant, signs were there from the get go-

although maybe I could argue the Hep B vaccine, given the day after birth, in 2005 still had the mercury in it,

BUT, her history like this gave him the insight it was gestational - which was why he insisted I get tested.

 

As for treatment, I am determined to get rid of this- doing my best.

I'm stubborn, tough and old, so I think in a sense I am better able to get deeper with the treatment, than say a child, and maybe it is harder still for the ones born with it.

Edited by S & S
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