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

[Guest guest]

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.