Re: New to group: adopted sibling of ASD child tests positive for lyme! (sorry,long)

[Guest guest]

I have one biological kid, age 11, with ASD (mostly recovered) and two adopted kids, ages 4 and 21 mos, who are half brothers. My 4 yr old had a lot of developmental delays, no autism, but also shows a messed up gut, messed up neurotransmitters, and probably lead toxicity. The baby is mildly speech delayed, but has had asthma and eczema. Are these linked? I think so. We have certainly seen biomedical similarities among all 3 boys, even though they have completely different personalities and each has a different father. But then, I'm looking for them.

For starters, I don't know about you, but I run across a lot of adopted kids with issues. So I wonder if there is some pre-existing exposure or poor prenatal nutrition that sets these kids up for some kind of a blow. I know poverty is what drives most adoption placements. My kids' birthmother thought a can of progresso soup was an excellent meal when she was pregnant. I can't even imagine the amount of MSG she ingested. We know there were no other substance problems, but she worked as a cocktail waitress and was exposed to smoke. I'm sure she didn't pass on healthy flora and my two guys were bottle fed, even with probiotic supplementation from Day 5 on. That set them up, certainly.

Also, we have recently learned that a stressful prenatal environment (like an unplanned pregnancy anyone?) can re-wire the brain and cause an over production of the wrong neurotransmitters. And, I believe, some neurotransmitters also do double duty as immune system signallers. If your daughter was born in China, just think of the terrible air pollution from all the coal burning plants that are going in almost weekly there.

So while I'm not able to address the actual transmission of Lyme, I can bet that there was an out-of-balance system in your younger daughter that was ready to play host to just about anything. especially if she did get a tick bite. If lousy gut flora acts as an infection, my whole family is toast.

And on a more woo-woo level, I think the Universe does send us these kids to us to be healed and loved. I swear I was about to scream if one more person said to me "It's like he was meant to be yours. You were the right family for him." I know in China they talk about red ribbons connecting you to all the people who are supposed to be in your life. But no matter how he got to me, I do believe he was meant to be mine.

Jill

"Every mighty oak was once a nut that stood its ground."

To: BorreliaMultipleInfectionsAndAutism Sent: Wednesday, December 10, 2008 2:10:39 PMSubject: New to group: adopted sibling of ASD child tests positive for lyme! (sorry,long)

I am new to this group, although I have been reading up on lyme & autism for some time. We've long suspected, but have ever yet been able to prove, lyme in my 7 year old daughter who has ASD. What's prompting me to finally join this group and do something is what has happened to her adopted sister! We're going to see a lyme doctor on Friday, and so I am looking for any specific advice to take to that consulation, as well as more general comments on what seems to me either a bizarre coinicidence or evidence of something very disturbing, namely the possibility of contagion from casual contact among family members. I apologize for this being long, but it requires some explanation.This is about two siblings, NOT BIOLOGICALLY RELATED, who have developed related gut and auto-immune issues. Has anyone else ever heard of lyme being transmitted to a non-gentically related sibling? (I saw a

post from Heidi N. that alluded to this in her kids.)Here is our story. I have two daughters, ages 7 and 4. One is a a biological child and has ASD; the other is adopted (from China) and is neuro-typical.Recently, my younger daughter (the adopted one) began breaking out in hives and angioedema (swelling of the lips). At first, we suspected a nut allergy, because first peanuts, and then tree nuts were initially the trigger, and caused the most severe reactions. However, she began breaking out even when there was no nut exposure or other likely trigger. The reactions were occuring several times a week, and becoming very distressing and debilitating to her. Meanwhile, while I would not go so far as to say she exhibited signs of autism, my husband and I noticed a deterioration in our adopted daughter's previously excellent social skills. The description at her preschool conference, "She likes

to play by herself and line up little things she has collected; she sometimes doesn't respond when you greet her," sounded eerily familiar!She tested negative for nuts, peanuts and all the other common food allergens on IgE skin prick and RAST testing. SHe tested positive however on an auto-immune assay, and therefore was formally diagnosed with "autoimmune urticaria" (which simply means hives caused by auto-immunity). At that point, the conventional allergist at our HMO could do nothing more for us--"No known cause; no known cure; use Benadryl"--so naturally I began digging further.Stool and saliva testing revealed that her gut was messed up, not unlike autistic kids, with high levels of candida, klebsiella and H, Pylori, and that she had antigens to milk and soy. (Previous stool testing showed high antigens also to gliaden).She also tested positive for lyme on a Western Blot IGM, but

negative on the IgG and on a traditional ELISA test. I too test positive for lyme on a Western blot IgM, negative on the IgG and the ELISA test. My older daughter, who has ASD, has an equivocable IgM, and a negative IgG. When we tried challenging my older daughter with a course of antibiotics, and retesting her, her lyme anitbodies went up, but still not enough to give her a positive reading. (My husband tests negative for lyme on both IgM and IgG.)SO now we're supsicious that lyme (or some similar pathogen that causes a positive IgM for lyme) is what is causing my younger daughter's autoimmune uticaria and gut disturbances.Now it's entirely possible my younger daughter contracted lyme from a bug bite in a deer infested area near Austin, Texas in June 0f 2007. The kids were feeding the deer in their grandpa's backyard. My daughter got an infected bite on her leg, had a bull's eye rash, and

was treated with 7 days of antibiotics. The docs pooh-poohed my request to test for lyme at the time.However, my positive IgM and her sister's equivocable IgM for lyme predate the Texas incident. Further, if this were truly a lyme infection from over a year ago, wouldn't one expect a positive IgG as well???? What does it mean to have a positive IgM, but negative IgG?So I can't shake this terrifying thought: Did my younger daughter contract this lyme from me or her sister, and if so what does that say about infectious theories of autism? And is it really lyme disease that is causing all this damage in our kids, or could there be some other pathogen (perhaps one we dont even have a name for yet) that mimics lyme on the Western blot and is taking up residence in kids whose immune systems are damaged (from, say, over-vacination or environmental toxins)?I recently had the priviledge

to chat with Dr. Sydney Finegold, of UCLA, who is doing research on gut flora in autistic kids and has hypothesized a theory of infectious causation in autism. Finegold has found certain subspecies of clostridia present in the stools of autistic kids and not present in controls. (A similar research study in the Netherlands found intermediate levels of clostrida present in the stools of non-autistic siblings). Finegold goes so far as to hypothesize that these clostrida subspecies play a causal role in autism and that the possibilty of transmission among family members explains the rising incidence of multiple cases of autism within families. In other words, it may be contagion and not genes (or perhaps some combination of the two) that explains why siblings of autistic kids are more likely themselves to have autism!I've read that lyme can be transmitted sexually, by breast milk or in utero, but

I've never heard of it being transmitted by everyday casual contact. Can that happen?!!! If indeed lyme or some other organism such as Finegold's subspecies of clostrida (and I wonder if anyone has ever looked to see if those subspecied would cross-react to produce a positive Western blot IgM?) are causing all these health issues in our children, it's scarey to think it may be transmittable, at least among family members who share regular contact. This sort of theory, if demonstrated, could lead to widespread social panic, and could result in families of children with autism suffering an isolation and ostracism far worse than anything they might have suffered in the "refrigerator mother" days! Of course, no one will say that autism is contagious! (If so, every child in my daughter's scool would have it by now.) But the possibility that pathogens that cause autism can be transmitted

through familial contact could lead to worries about the spread of other lesser conditions, such as Asthma, Allergies, ADHD, etc. Perhaps (I hope) I am blowing this out of proportion. I feel a bit like Oedipus asking questions it may not be in my best interests to answer. And yet, I can't help but ask the questions. In the case of my daughters, it just seems too strange to be entirely coincidental that two non-genetically related kids should both develop gut problems, autoimmune issues and gluten/dairy intolerance. It seems there has to be something they share in common, either toxins in our house, or a common pathogen, that is causing their related ailments.It seems to me that it could potentially be very revealing to look at similar cases of non-biolgocial siblings or half-siblings who have developed autism or related ailments, if there are other such cases out there. In the

case of my younger daughter who has been suffering from hives, we have decided to put her on a GFCF diet, and then begin the process of healing her gut through antifungal and antimicrobial remedies. Meanwhile, we will be talking to lyme experts and must decide between antibiotic or naturopathic treatment. Already 12 days into being GFCF, my younger daughter is happier and more social and seems to be returning back to her old self. SHe has gone a full week without hives. But it is still too early to draw any conclusions.And maybe she is the messenger that will force me to again address the issue of lyme in my older daughter, which we have always suspected, but never been able to prove.I'd love to hear of any other cases of transmittal among family members, especially ones not genetically related.I welcome also any gneral comments on these issues, and any suggestions for apporaches to

pursue with both my daughters. Has anyone ever heard of lyme causing recurrent hives?What additional tests should be done to confirm lyme or co-infections?How do we decide whethr to treat with antibiotics or herbal rememdies (per Dr.Klinghart or Amy Derkson)? (We live in Seattle.)What should I do about my older duaghter how may well have lyme (I'm more convinced now that ever, after what happened to her sister), but we can't prove it. When we tried the trial of antibiotic treatment for lyme before, her clostridia went way high, so we stopped it. Big sister had a bout of viral meningitis in June in Florida, and was hopsitalized for three days. When they did the lumber pucncure to diagnose her menigistis, I asked the hospital to test her CFS for lyme, but instead of sending it to Igenix, as I requested, they did it in house, and it came back

negative.

[Guest guest]

:

Your brain is on high-thinking mode. Sometimes mine does that. LOL.

I think we have to look at what we see. Sometimes science is

complicated and unknown. In that there will always be scientific

pieces unknown to us becuase we are complex in a complex world. I

think you should go with what you see. Your adopted girl is

developing new symptoms she did not previously have. Thus, yes she

has acquired these symptoms. But, exactly how, I can not say. She

may have gotten them from your family, and maybe the Clostridia

theory is correct. Maybe a flea bit both your daughters, maybe it

was from vaccines she got when she came. It could be from mold in

your car or home, or pesticides from food. The food in the USA is

totally different from the food in oriental countries. She may have

even had all her pathogens and toxins with her but was consuming

something in her old country that kept the pathogens and toxins in

check.

The symptoms could also be from wireless gadgetry, cell phones, WiFi,

maybe you live on soil contaminated with something. There are so

many possibilities. I think Lyme is always a main culprit because it

effects the immune system in a way that allows pathogens and toxins

to stock-pile. Not to speak for lyme docs, but I think many would

consider either IgG or IgM to be a positive since the immune system

is often too weak to show recent infection, not only to lyme, but

maybe even to other pathogens as well. I have seen people develop

symptoms of ADHD at age 8 after not having these symptoms before.

Actually, many mental illnesses, like Bipolar and Schizophrenia used

to only develop in teen years or adult years. We now see these

diagnoses in toddlers, often in addition to autism.

I actually do feel the basis for most mental and developmental

illnesses is pathogens and toxins; the pathogens of course being

transmitted from person or animal to other persons or animals, with

also ticks, fleas, lice, etc. being involved. I share your fear

about this conceptualization and if it will be publicized and people

ostracized because of it. As much as I like to point the finger at

lyme, I also see Bartonella and possibley syphillus as big

contributors. I do know one thing that is for sure, lots of people

are reporting great reductions in symptoms of autism from anti-

bacterials. Thus, a bacteria is involved and its taking a long time

to rid, and it responds to anti-bacterials that kill lyme. Some

antibiotics make people worse, so which antibiotic used is

important. Antibacterial herbs seem to be much more likely to be

helpful in a broad sense.

I have also seen reports here and there that many of the pathogens

causing problems have always been around and in our families, but

that they are effecting us more now because of pesticides. Thus, a

pesticide exposure is being blamed by some for waking up these latent

pathogens. Now this brings us to all these pathogen problems. Most

with autism have opportuniistic infections, in that they have germs

we all carry, but are only a problem and overgrow when the immune

system is stressed. So what is stressing our immune systems, making

these pathogens over-grow in us. That is the question and frankly, I

think there are many answers.

Pnuemonia is caused by bacteria, viruses, protozoan, heart disease,

allergies, drowning, etc. Thus, autism could also be caused by many

things. When you ask the doctor, why did Fred get pneumonia and the

rest of us just got colds, the doc says immune differences. Thus, we

are back to why our immune systems are failing us. Likely any number

of reasons: mercury, vaccines, electrosmog, pesticides, processed

foods, etc. So, here are my thoughts, not answers, but what can I

say. I only know what others know. When someone figures this out,

if ever, and publicizes it, then I will know. Until then, this is

all I know - which still leaves us with unanswered questions. In

the mean time, realize that you are doing so much for your family,

and no matter what has caused this situation, you are giving love and

devotion towards enhancing their life. And frankly, that is the best

any of us can do at this time.

Love and prayers,

Heidi N

>

>

> I am new to this group, although I have been reading up on lyme &

> autism for some time. We've long suspected, but have ever yet been

> able to prove, lyme in my 7 year old daughter who has ASD. What's

> prompting me to finally join this group and do something is what

has

> happened to her adopted sister! We're going to see a lyme doctor

on

> Friday, and so I am looking for any specific advice to take to that

> consulation, as well as more general comments on what seems to me

> either a bizarre coinicidence or evidence of something very

> disturbing, namely the possibility of contagion from casual contact

> among family members. I apologize for this being long, but it

> requires some explanation.

>

> This is about two siblings, NOT BIOLOGICALLY RELATED, who have

> developed related gut and auto-immune issues. Has anyone else

ever

> heard of lyme being transmitted to a non-gentically related

sibling?

> (I saw a post from Heidi N. that alluded to this in her kids.)

>

> Here is our story. I have two daughters, ages 7 and 4. One is

> a a biological child and has ASD; the other is adopted (from

China)

> and is neuro-typical.

>

> Recently, my younger daughter (the adopted one) began breaking out

in

> hives and angioedema (swelling of the lips). At first, we

suspected

> a nut allergy, because first peanuts, and then tree nuts were

> initially the trigger, and caused the most severe reactions.

> However, she began breaking out even when there was no nut exposure

> or other likely trigger. The reactions were occuring several

times

> a week, and becoming very distressing and debilitating to her.

> Meanwhile, while I would not go so far as to say she exhibited

signs

> of autism, my husband and I noticed a deterioration in our adopted

> daughter's previously excellent social skills. The description at

> her preschool conference, " She likes to play by herself and line up

> little things she has collected; she sometimes doesn't respond when

> you greet her, " sounded eerily familiar!

>

> She tested negative for nuts, peanuts and all the other common food

> allergens on IgE skin prick and RAST testing. SHe tested positive

> however on an auto-immune assay, and therefore was formally

diagnosed

> with " autoimmune urticaria " (which simply means hives caused by

auto-

> immunity). At that point, the conventional allergist at our HMO

> could do nothing more for us-- " No known cause; no known cure; use

> Benadryl " --so naturally I began digging further.

>

> Stool and saliva testing revealed that her gut was messed up, not

> unlike autistic kids, with high levels of candida, klebsiella and

H,

> Pylori, and that she had antigens to milk and soy. (Previous stool

> testing showed high antigens also to gliaden).

>

> She also tested positive for lyme on a Western Blot IGM, but

negative

> on the IgG and on a traditional ELISA test. I too test positive

for

> lyme on a Western blot IgM, negative on the IgG and the ELISA

test.

> My older daughter, who has ASD, has an equivocable IgM, and a

> negative IgG. When we tried challenging my older daughter with a

> course of antibiotics, and retesting her, her lyme anitbodies went

> up, but still not enough to give her a positive reading. (My

husband

> tests negative for lyme on both IgM and IgG.)

>

> SO now we're supsicious that lyme (or some similar pathogen that

> causes a positive IgM for lyme) is what is causing my younger

> daughter's autoimmune uticaria and gut disturbances.

>

> Now it's entirely possible my younger daughter contracted lyme from

a

> bug bite in a deer infested area near Austin, Texas in June 0f

2007.

> The kids were feeding the deer in their grandpa's backyard. My

> daughter got an infected bite on her leg, had a bull's eye rash,

and

> was treated with 7 days of antibiotics. The docs pooh-poohed my

> request to test for lyme at the time.

>

> However, my positive IgM and her sister's equivocable IgM for lyme

> predate the Texas incident. Further, if this were truly a lyme

> infection from over a year ago, wouldn't one expect a positive IgG

as

> well???? What does it mean to have a positive IgM, but negative

> IgG?

>

> So I can't shake this terrifying thought: Did my younger daughter

> contract this lyme from me or her sister, and if so what does that

> say about infectious theories of autism? And is it really lyme

> disease that is causing all this damage in our kids, or could there

> be some other pathogen (perhaps one we dont even have a name for

yet)

> that mimics lyme on the Western blot and is taking up residence in

> kids whose immune systems are damaged (from, say, over-vacination

or

> environmental toxins)?

>

> I recently had the priviledge to chat with Dr. Sydney Finegold, of

> UCLA, who is doing research on gut flora in autistic kids and has

> hypothesized a theory of infectious causation in autism. Finegold

> has found certain subspecies of clostridia present in the stools of

> autistic kids and not present in controls. (A similar research

> study in the Netherlands found intermediate levels of clostrida

> present in the stools of non-autistic siblings). Finegold goes

so

> far as to hypothesize that these clostrida subspecies play a causal

> role in autism and that the possibilty of transmission among family

> members explains the rising incidence of multiple cases of autism

> within families. In other words, it may be contagion and not genes

> (or perhaps some combination of the two) that explains why siblings

> of autistic kids are more likely themselves to have autism!

>

> I've read that lyme can be transmitted sexually, by breast milk or

in

> utero, but I've never heard of it being transmitted by everyday

> casual contact. Can that happen?!!!

>

> If indeed lyme or some other organism such as Finegold's subspecies

> of clostrida (and I wonder if anyone has ever looked to see if

those

> subspecied would cross-react to produce a positive Western blot

IgM?)

> are causing all these health issues in our children, it's scarey to

> think it may be transmittable, at least among family members who

> share regular contact. This sort of theory, if demonstrated,

could

> lead to widespread social panic, and could result in families of

> children with autism suffering an isolation and ostracism far worse

> than anything they might have suffered in the " refrigerator mother "

> days!

>

> Of course, no one will say that autism is contagious! (If so,

every

> child in my daughter's scool would have it by now.) But the

> possibility that pathogens that cause autism can be transmitted

> through familial contact could lead to worries about the

> spread of other lesser conditions, such as Asthma, Allergies, ADHD,

> etc.

>

> Perhaps (I hope) I am blowing this out of proportion. I feel a bit

> like Oedipus asking questions it may not be in my best interests to

> answer. And yet, I can't help but ask the questions. In the case

of

> my daughters, it just seems too strange to be entirely coincidental

> that two non-genetically related kids should both develop gut

> problems, autoimmune issues and gluten/dairy intolerance. It seems

> there has to be something they share in common, either toxins in

our

> house, or a common pathogen, that is causing their related ailments.

>

> It seems to me that it could potentially be very revealing to look

at

> similar cases of non-biolgocial siblings or half-siblings who have

> developed autism or related ailments, if there are other such cases

> out there.

>

> In the case of my younger daughter who has been suffering from

hives,

> we have decided to put her on a GFCF diet, and then begin the

process

> of healing her gut through antifungal and antimicrobial remedies.

> Meanwhile, we will be talking to lyme experts and must decide

between

> antibiotic or naturopathic treatment. Already 12 days into being

> GFCF, my younger daughter is happier and more social and seems to

be

> returning back to her old self. SHe has gone a full week without

> hives. But it is still too early to draw any conclusions.

>

> And maybe she is the messenger that will force me to again address

> the issue of lyme in my older daughter, which we have always

> suspected, but never been able to prove.

>

> I'd love to hear of any other cases of transmittal among family

> members, especially ones not genetically related.

>

> I welcome also any gneral comments on these issues, and any

> suggestions for apporaches to pursue with both my daughters.

>

> Has anyone ever heard of lyme causing recurrent hives?

>

> What additional tests should be done to confirm lyme or co-

infections?

>

> How do we decide whethr to treat with antibiotics or herbal

rememdies

> (per Dr.Klinghart or Amy Derkson)? (We live in Seattle.)

>

> What should I do about my older duaghter how may well have lyme

(I'm

> more convinced now that ever, after what happened to her sister),

but

> we can't prove it. When we tried the trial of antibiotic

treatment

> for lyme before, her clostridia went way high, so we stopped it.

Big

> sister had a bout of viral meningitis in June in Florida, and was

> hopsitalized for three days. When they did the lumber pucncure to

> diagnose her menigistis, I asked the hospital to test her CFS for

> lyme, but instead of sending it to Igenix, as I requested, they did

> it in house, and it came back negative.

>

>

>

>

>