heckyeah
Frequent Contributor (1K+ posts)
Member # 603
posted
My husband and I have both fought Lyme and co-infections for at least a decade (me longer than him) and we're finally functional but still treating. I treated while I was pregnant. Our daughter was born in Jan 2005 and was gorgeous. Everyone likened her to the Gerber baby.
She turned out to be a bit quirky... not sleeping well (15 min intervals) and then sleeping great through the night and then needed to fall asleep in her swing or she wouldn't sleep then at 1 stopped sleeping through the night and has been so since then. She started having tantrums at 1 and would hit and kick and scream. She started talking but then things slowed down in that area. She stopped acknowledging me or interacting with me. Really no eye contact since she was a baby actually.
I had my placenta tested, the cord blood and then did urine testing (all igenex) on her which was all negative. No classic lyme symptoms.. she was hardly ever sick... so much healthier it seemed than her cousins actually. When she did get sick it was gone quickly and no big deal. (When I caught it it lasted forever it seemed!) My SIL is a speech therapist and recommended evaluation and that's when questions started to get answered or so we thought.
After much difficulty we had her blood tested (the lab that drew the blood, spun it and put it in the kit bag left out the test order form, etc) and I got a copy of the results finally yesterday. On the phone last week the nurse had told me all was negative (no surprise there) and I asked her specifically if there were ANY positive bands. She says no. "NO positive bands?? None at all?" She says cheerily "that's right!"
IgG
39 IND 41 ++ 66 +
IgM
39 IND
I cried so hard last night. I sobbed in the corner of the bathroom trying not to wail so my daughter wouldn't get upset. My husband entertained her while I tried to come to grips with this and what it might mean or not mean... was this good news or bad news? It all just sucks. Will her autistic symptoms go away? Is she young enough to make a complete recovery or will she suffer like we have? What will her herxheimers be like? I have so many questions and no answers. As always, I don't like to wait for answers to my questions but I have to.
Now I'm waiting for Dr. J's phone number to come from this forum (i posted to seeking doctor section) because I can't find it on my computer. I probably deleted it at some point hoping I would never have to call it...
I'm so angry and yet I don't have time to be angry or deal with my emotions as usual. My daughter needs me to be present for her. She's an angel but suffering trying to deal with her environment. She has therapies.. speech, spec ed and OT which she is doing very well in. It's hard work for a toddler though.
Ok, I'm done for now. My daughter is done using her computer (she's a genius btw).
Posts: 1082 | From Upstate New York | Registered: Jan 2001
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posted
I just got my igenex tests back - not cdc pos but definitely a pos. My son has been dx with autism for the last 4 years (he's 5 and a half now).
I just saw my first llmd on Tues and am taking son to have igenex testing early next week (I hope!).
I'm sure he'll come back at least IND if not positive.
This can be a VERY GOOD thing. There's one woman on here whose daughter lost all autistic qualities after two weeks of abx and continues to be sx free to this day.
You may find that a lyme dx in your daughter will be a blessing in disguise - I can't decide whether or not to hope for ld in my son. I wouldn't wish this on him for the world, but if tx means a normal life for him, then I *do* hope he has it!
My fingers are bad so I'm not on everyday, but feel free to PM me if you want to struggle through this together.
xoxo Sarah
Posts: 10 | From Knoxville, TN | Registered: Apr 2007
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posted
So, so sorry that your family has had so much to deal with!!
Of course I'm not a dr & I haven't faced the challenges that you have each day, but I think you should consider a Lyme diagnosis as a blessing.
What treatment is there for autism? As I understand it, there are ways to deal with the symptoms, but no treatment to improve the condition.
I'm assuming you are familiar with the website on Lyme Induced Autism.
Maybe you don't realize it yet, but your tears could have been tears of joy and relief because the right LLMD can prescribe treatment for your precious daughter.
With adequate Lyme treatment, there is hope!!
Sending hugs, love & support to all of you.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup, Heckyeah, Sarah, that is my daughter Evan- two weeks into Cedax and she was back- she had been gone for almost a year- and from then on she was back mentally 100% but still complained of joint pain for a while she did have to stay on for 3 years and have 9 months of mepron & zithromax before she was in full remission but she has been in full remission for 5+ years now. She is a genius too*)!*)! She got the highest state test scores at her whole school!!! But she is an ultra-normal happy kid with tons of friends- and a great big sister-
anyway- I answered you on medical already- Doc J is an angel- our LLMD consulted with him for her treatment- she was on cedax for months and then amoxicillin and then mepron & zithro- and then nothing for the past 5+ years- and is physically very active and socially-
You are LUCKY Heck!!!!!! If she has LIA she can be treated and go into remissioN!! ALL kids I have seen treated locally go into full remission eventually- kids do!!! Youngest absolute chronic I ever met was 16-
AND if she has Babesia and has to take Mepron, boy my kid loved Mepron- I gave her ice cream every night for the fat absorption(*)!)*!*)! Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Interesting and timely subject. I just took my 4 year old son to Dr. J on April 23rd. He brought up the topic of Lyme induced Autism.
Dr. J, as you've heard here, is an angel. He is a truly rare breed of doctor. If it's Lyme, your child will be fine... Just take the right care.
The folks on this board are incredibly knowledgable and committed. Listen to them!!!
John
Posts: 11 | From Rockland County, NY | Registered: Oct 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Your story touched me, heckyeah. I remember dropping the phone and screaming when I found out my 10-month old tested positive for Lyme by urine PCR.
Fortunately, he has had few symptoms and is now 4, but I worry ALL the time.
Oddly, of my 3 sons, he is the one who doesn't seem to have any autistic qualities. My oldest has Down syndrome combined with strong autistic tendencies, while my middle son shows some mild autistic tendencies.
I was infected with Lyme while pregnant with my 3rd. As far as I know, he and I are the only positive ones in the family.
It's EXTREMELY hard emotionally to have autism and Lyme in your family (and Down's, too, in my case) but you're not alone.
Hopefully treatment will turn things around for your beautiful daughter. God bless!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
Wanted to share a success story.
My son has had some very mild autistic symptoms from birth.
These got much worse with lyme infection at age seven.
Treated age 11 for last 2 yrs.
He is doing great! Cheerful, social- my friend who just saw him for first time in a couple yrs was blown away. Could not get over his manners, eye contace and with it ness if you know what I mean. I am sure it was the lyme that exacerbated things. Lyme treatment change every. Wheat free dairy free diet has boosted mood lately to where he won't eat it.
Also maturing has helped. He potty trained, tied shoes, etc quite late; back on track.
He is still his unique self; but himself again.
Thank goodness you identified the lyme infection. Treatment will make all the difference!
pm me anytime if you'd like. Char
Posts: 1230 | From US | Registered: Nov 2005
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I feel for you. This is such a trauma to our hearts when our children are hurting and sick and we can't seem to get the answers fast enough.
The baby you described was my daughter as a baby who is now 19. Didn't sleep, didn't eat, edgy, colicy, uncomfortable.
She was fortunate enough to get diagnosed with lyme a year and a half ago. But she went through school not functioning well, couldn't think, constantly overwhelmed, teachers thinking she's lazy, etc. It was hell.
What a strong spirit she has become to struggle through junior college, passing some classes, not passing others. There's lots of heartbreak but much strength will be gained through this too.
I don't have any experience with treating young children but I think there are many here who have done it with good results. We are having all her mercury fillings removed this month and starting her on some detox for heavy metals. I think this has contributed to her overall poor health.
I'm so sorry, I know it hits hard. Hang in there.
Posts: 460 | From Illinois | Registered: Aug 2005
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posted
i don't know if there's really such a thing as "lyme induced autism", even tho it may be a term that's used.
there are certainly cases of autistic-like symptoms caused by lyme and co.
good luck in your persuits, the little ones often respond beautifully to appropriate treatment.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
OMG HECKYEAH, I find this to a degree refreshing... do not give up keep up the fight.. I will share briefly without long windy details..
My son at around 15months of age began to show signs of autism.. he would sit in front of a stove, refrigerator, tub anything that was cold and hard like porcelain... and just sit there rocking back and forth banging his head against the hard cold item.. just sit there rocking..
I thought it was unusual behavior I began to seek answers. ran him to agencies, doctors, etc... I was further told to monitor his behavior and that if this continued beyond 18 months that he was most likely autistic...
several months passed and he still reverted to this behavior and then suddenly it stopped as soon as it began..
;later .. he was diagnosed with ADHD at age 3 and I was told he would need: (this was a government agency) one on one constant supervision with a structured environment... along with speech therapy since he had what they then called a "tongue thrust dysfunction"...which would require speech therapy.. we never went for speech therapy..
I was recently told that children with autism are extremely bright children and my son has had numerous evaluations from numerous different psychiatrists all which tell me that this young man is exceptionally bright and they also told me that the tell tale signs of this were indicated way back when he showed signs of autism.. he managed to hold on to this world but was ready to cross over..
they explained the reason why they cross over is because to them (being of high intelligence) they can not deal with the lack of sense the world around them appears not to make to them...
they are far more advanced and choose not to deal with the confusion and chaos of the world.. they create their own world which makes more sense to them.and makes them feel more secure and comfortable.. and stay there .. now and then to come back and check this one out...
I had given up on what others were telling me. I spent more time with him and coddled him. I used textile comfort techniques ( touching and soothing) I would spend hours every night to put him to bed.. most people told me to just shut the door and let him cry himself to sleep..some told me to turn on a radio and drown out other noises that may disturb his sleep...
.I refused.. I spent hours patting him on the back and rubbing his arm and he would rub my other arm. everyone thought i was crazy to go to such efforts to make him want to go to sleep...
he needed this to reassure him that he was loved and wanted...more so than his siblings.. something was exceptional about him .. I was recently told in a counseling session that this was important factor in his infancy .. that was enough to make him want to stay in this world instead of leaving and creating his own world where things made more sense to him and the comfort was there that didn't seem to be in our world..
I imagine the more intellegent a child is, the less sense this world will make to them..
sliding them into autism.. I would love to hear how things are if you want to keep in touch just email me.. or just sound off if ever you need an ear.. my constant email is [email protected] since it appears we may be moving yet again.. no sense in givng you my local server email addy....
Hugs to you and never give up and follow your instincts .. they will not fail you.. you have a unique bond with your child one that no one else can share or sometimes understand.. stick to your instincts.. again hugs to you and yours.. God bless Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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