heckyeah
Frequent Contributor (1K+ posts)
Member # 603
posted
Hi... I already requested Dr. J's info on the seeking doc group. I was just hoping someone on here is in the same position with a positive outcome. My daughter is 27 months old and was diagnosed with PDD-NOS on the spectrum when she was two although she has had symptoms since 1. She has a lot of sensory integration problems.
We ordered testing at Igenex through her nonLLMD pediatrician and the results are 'negative' but the bands don't look good:
IgG
39 IND (specific to Bb) 41 ++ 66 +
IgM
39 IND (specific to Bb)
Her babesia and bartonella were negative.
I treated while I was pregnant... took meds every six hours but did have a flare up near the end of my pregnancy... just couldn't get my abx levels high enough (I was tested throughout.) I'm so angry.
Any additional info / resources you might have would be greatly appreciated. I will vent in the support section most likely.
Posts: 1082 | From Upstate New York | Registered: Jan 2001
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posted
My friend with Lyme has a 4 year-old son with autism. He is also positive for Borrelia and Bartonella which does NOT mean treatment here in this country.
She found a doc who's son also had autism. He is treating now autistic kids with the gluten- and casein-free diet, with supplements and heavy metal detoxing. Also, he gives them Nystatin against yeast.
He checked my friends son for other food allergies (and found quite a lot). Since November 2005 he is on the diet and after 3 terrible weeks with horrible withdrawal symptoms he started to improve.
Some months later he got tested for heavy metals and they found a very high level of lead. This doc says in his experience autistic kids most of the time have a heavy metal problem and most of the times its lead rather than mercury.
Therefore, he is also getting DMSA for chelation and since then his progress is incredible.
He still has ups and downs but if he continues like this we are confident that in a few years he will be able to attend a normal school. His main problem is still speaking but he is trying now very hard.
Twice he made a diet mistake and catched some milk and gluten-containing food and you should have seen him turn completely mad and become totally autistic again. It took him three weeks to recover from that.
According to this doc 80% of his autistic patients profit from this diet. As to the heavy metal detox: I would not have believed it if somebody had told me before. But I can SEE the progress with my very eyes. It's amazing.
Long story short: Next to abx, I can only recommend you to also look into these problems: leaky gut (and consequently zero tolerance to gluten and casein) and heavy metal poisoning.
All the best to your little one.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I agree. Please see a certified DAN! doctor (contact Autism Research Institute). I'm not sure how you taking antibiotics all through pregnancy effects a fetus, but it surely must since other drugs do. To then give abx at such a young age--is extremely worrisome to me.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Long story short: Next to abx, I can only recommend you to also look into these problems: leaky gut (and consequently zero tolerance to gluten and casein) and heavy metal poisoning.
I think this is very good advice. DEFINITELY look into the celiac connection. Even if her tests come back negative, try the diet!!
With autism at epidemic proportions and the new apparent linking of Lyme disease to autism, parents need answers and ways to help their children.
The LIA Foundation is holding the first ever conference to educate families and physician's on the proper treatment for children with Lyme disease and autism.
Corona, CA (PRWEB) March 21, 2007 -- Doctor's are suggesting that up to 90% of children with autism are infected with the borrelia bacteria which is in fact the bacteria which causes Lyme disease.
With autism numbers increasing to a staggering 1 out of 150 children, it is clear that physicians and parents need to educate themselves on how to help these children.
Parents have formed the LIA Foundation with goals focusing on awareness, education and research. The LIA Foundation held it's first physician's "think tank" in January, which was considered a great success. However, it is clear that more work needs to be done.
There are many more incredible speakers on the schedule as well The foundation is holding it's first conference titled "Lyme-Autism Connection Conference" in Irvine, CA on June 22nd through the 24th.
The conference is geared for parents, practitioners and Lyme disease patients.
Co-Founder Tami Duncan states, "The Lyme-Autism Connection conference is a fabulous opportunity to bring the most knowledgeable of the Lyme physicians and autism physicians together to educate us on the proper treatments available. Parents want to know how to help their child.
Our conference will bring the most cutting-edge, updated information so that parents can do just that, help heal their child."
The conference will consist of a very intensive program which includes a general sessions with topics such as, chronic co-infections in autism spectrum disorders, immunology of Lyme disease and associated disorders, a story of recovery, nutritional and biomedical approaches to patients with chronic infections and much more.
Also, a special physician's roundtable session in which physician's can learn proper testing, diagnosis and treatment methods. Duncan says, "We are absolutely pleased to announce that the leading Pediatric Lyme Specialist in the country, Dr. Charles Ray Jones, will be conducting the physician's training and is our keynote speaker."
Jones is a pediatrician in which children are sent from thousands of miles away to get proper treatment of their disease. He has treated over 7,000 children who are infected with Lyme disease, many of which are also autistic.
In addition to Dr. Jones, other well known speakers include, Anju Usman, M.D., Professor Garth Nicholson of the Institute for Molecular Medicine, Doris Rapp M.D., Dr. Jeff Wulfman, Geoffrey Radoff, M.D. and a special Friday night workshop from the Homeopathy Center of Houston.
"There are many more incredible speakers on the schedule as well", says Duncan. "These are the experts in their respective fields and we are excited at how the agenda is shaping up."
The Hyatt Regency in Irvine will be the location of this important event. Registration is now available online at www.liafoundation.org.
Discount registration is available for people who register before June 1st. Exhibitor spaces are also available. There is a limited amount of space available so attendees are encouraged to take advantage of the early bird registration pricing.
About Autism Autism is a disorder that currently affects 1 out of 150 children. Boys are the majority of those affected. The numbers of autism cases spiked in the mid-late 90's and continues to remain high.
The exact cause of autism is still unknown, however, many theories exist. Most children do improve with some sort of bio-medical intervention.
About Lyme disease Lyme disease is generally caused by a tick bite and can mostly be eradicated with anti-biotics. Chronic Borrelia is a long-term infection that exists can be undiagnosed Lyme disease or transmitted in some other way.
Symptoms include, achy joints, confusion, slurring words or word retrieval problems, brain fog, sensitivity to light and sound. Lyme disease in its late stage can be fatal, causing MS like symptoms and debilitating its victims. One of the disorders in which Lyme disease is known to mimic is autism spectrum disorder.
About the LIA Foundation The foundation was started in September 2006 by parents of children with autism and Lyme disease. Kathy Blanco of Beaverton, OR and Tami Duncan of Corona, CA are the founders.
The foundation's goals are to provide awareness, education and research on the link between borrelia and autism.
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-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Please contact me privately if you are interested in HBOT... We may be able to work something out that would benefit you both.
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Sarah, as you know I am so glad you and your daughter are doing well. But it's important to note that you are both tolerant of antibiotics--you are still on orals and need to stay on them and can stay on them. Some folks are simply not tolerant. Some get really bad yeast issues or raised liver enzymes. There's genetic variation about that just as there is about lyme reactions.
Posts: 2276 | From united states | Registered: Jun 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
That's true- sorry- I am sensitive re anti-abx stuff!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- 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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I watched my 9 year old daughter go from normal to "autistic like" with a "neurodegenerative" disorder.
It was Lyme all along.
PM me.
I have a lot of experience and professional information.
Get her to an LLMD. Get her on abx. Control her diet: non gluten, non casien.
Lyme can mimic autism and neurodegenerative diseases.
Believe me, I am a psychologist with a specialty in autism. Autism starts at 1.5 to 2.5 years of age. If not, unless it is a rare form of Asperger's, it is not autism, but another neurological disorder e.g. Lyme that is causing this.
My (now) 20 year old daughter is brain damaged (seizures, chronic lyme) but no longer autistic in any sense. She was for four years.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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heckyeah
Frequent Contributor (1K+ posts)
Member # 603
posted
Thanks for all the supportive responses. I have no doubt that holistic approach is best used for both Lyme and Lyme induced autism too.
My daughter has a naturopathic doctor who has been caring for her since the beginning before her autism diagnosis. She has never needed any traditional medicine until recently when she developed a high fever. After two days with the fever, the side of her face swelled up horrifically. At the ER they gave her IV rocephin. The next day she was a new kid almost back to normal. She had two more shots of it over the next couple of days.
We always treat her minor illnesses with homeopathic or herbal remedies carefully and never use traditional meds. I'm upset that my daughter will most likely need some antibiotics but thankfully I know enough about natural medicine to couteract the side effects or repair the damage done. I just hope it is a quick recovery but I know Lyme too well to really hold my breath on that one.
My daughter does not consume any dairy products/casein already but it's difficult to eliminate all the gluten... she has oral motor problems and doesn't chew (she suckles her food) so will only eat meat that is pressed into nuggets or sticks (fish sticks). How I can mimic such foods I'm not sure... grind up the meat and somehow get it to stick together with corn coating??? Any advice on this would be great. Of course, the foods she eats are very limited partially by her inability to really chew and also her autistic quirkiness. The only vegetable she eats is very soft cooked broccoli. She eats fruits and loves her organic o's (no wheat but oat which I THINK they say now is gluten free???)
Anyway, I went off on a tangent. I would love to see a DAN doctor but the $ is crazy and Dr. J is expensive enough since my daughter is uninsured right now. I put more weight into Dr. J's treatment options and I'll use the other alternative med info I have to fill in the gaps. If I won the lottery I'd be at a DAN doc and then some in a flash. I'd use HBOT too!!
Thanks, Jennifer
Posts: 1082 | From Upstate New York | Registered: Jan 2001
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-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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