One of the doctors that has been highly successful in treating Congenital Lyme is Dr. Charles Ray Jones . Dr. Jones is one of many doctors who has fought legal battles for treating Lyme. Here is a speech he gave on the topic at the 2008 Lyme-Induced Autism Foundation Conference. Another highly acclaimed doctor in the Lyme community is Dr. Dietrich Klinghardt . Here is a speech he gave in 2009 that discusses Congenital Lyme and the link to Autism, the link to metal toxicity and more. From what I can tell, Dr. Klinghardt's treatment protocols are believed to be the most cutting edge. A good friend and fellow Lymie read that approximately half of Dr. Klinghardt's patients are children and a significant amount of those children have Autism.
The Lyme-Induced Autism Theory
As a parent, I have followed Autism research and the vaccination controversy very closely. It was fascinating to learn that there is a potential Lyme/Autism link. There is a foundation dedicated to this, the L.I.A. Foundation (L.I.A. stands for Lyme-Induced Autism) and many Lyme-literate Pediatricians, including Jones and Klinghardt, believe there is a link and that the hotly debated MMR vaccine can be one of the Autism triggers when Lyme is present. In this video, Dr. Warren Levin explains his experience with Lyme-induced Autism.
My children have both been vaccinated. I was terrified of the MMR vaccine and therefore had our oldest vaccinated for each disease individually (Mumps, Measles, Rubella), instead of all in one shot. Apparently, this is no longer an option, as the MMR manufacturer no longer offers this option. And as an added bonus, another live virus, the Chicken Pox vaccine, has been added to the MMR, our children's pediatrician offered encouragingly on a recent wellness visit with our youngest. What?! Has everyone gone insane? The MMR caused enough controversy on it's own. Now they are ADDING to it? They certainly aren't making the choice very easy for parents.
In my opinion, vaccines are risky as it is. They contain many toxic chemicals and are given out at specific ages, regardless of weight. To me it was always a choice of the lesser of two evils: vaccinate knowing there are risks or don't vaccinate and hope our children do not get a dangerous illness. On this topic, Lyme changes things for me. And it should be a careful consideration of all parents, as many doctors feel Lyme is an epidemic and many, many people are not aware that their vague symptoms are actually Lyme.
Worrying for Good Reason
I still have a lot to learn. I still have so many questions. I still don't know if my children have Lyme and if they do have it, I don't know if they will live a normal life because of it.
Some may say, "Why are you worrying about this when you don't even know if they are positive yet?" Well, if you are a parent, surely you understand the fears I am experiencing. Even if you aren't, surely you must understand. These are my children, who I would do anything to protect. And this is one 'boo boo' I may not be able to make better.
A few family and friends have recently reassured me: "Parents give things to their kids all the time...Scoliosis, Cancer, short stature, bad teeth." While I appreciate that logic, if my children do have Lyme, the spirochete (corkscrew-shaped bacterium) could be 'eating away' at their brain, their heart, their muscles, their nervous system as I type this. They could wake up one day paralyzed or unable to stand without blacking out (two cases I have learned about in my research). They may spend their lives fighting a disease that is evasive and difficult to treat. They may become aware that they are 'different' and face social isolation from their peers. Many kids with Lyme fight depression, severe anxiety and many often contemplate and attempt suicide. Even if they show little signs, they will spend their lives on a very strict gluten-free, dairy-free, sugar-free diet, which is challenging to follow in this pizza, chocolate, carb-loving world we live in.
Every parent I have had the opportunity to speak with that has been diagnosed with Lyme, has children who have also tested positive. Their stories are heartbreaking. Tiffany, a mom I met through one of the message boards through Facebook, recently found out four of her five kids tested positive. She is waiting for the results of testing on the fifth. Helen, who I mentioned earlier, has two children. Her oldest is symptom-free to this day and is therefore not treating. The youngest, her daughter Teri, made it into college before becoming seriously ill. As Helen puts it, she was: "fine one day and down the next - and has never recovered since." Her symptoms include "severe dysautonomia - where she can't sit up or stand more than a few minutes without starting to black out, seizures, horrific headaches 24/7, heat intolerance, brain fog, chronic fatigue, bizarre neuro issues, etc." Their lives now revolve around getting her well.
Other parents talk about how their children battle illness constantly due to their weakened immune system that is characteristic of Lyme patients. Many of them are very sick from their own battle with this disease and it is all they can do to take care of themselves, let alone their children. Some call Lyme Disease a disease for the rich, because some of the treatment options cost thousands of dollars a week.
My husband's aunt was diagnosed with Lyme a few years ago and she has a child who is autistic. As far as I know, he has not been tested for Lyme, but it would be interesting to see the results, considering the research that has been done in recent years.
These are just a few of the reasons I worry. This is what is keeping me up at night. I pray my children are spared from this disease. I hope the worst they experience is having to watch me go through this. I hope that my son's chronic leg pain is just growing pains. I hope my daughter is just petite and not experiencing what doctors call 'failure to thrive.' Chronic leg pain and failure to thrive are both found in kids that test positive for Lyme. Most of all, I cling to the hope that if they do test positive, that there is a doctor who can cure them or, at the very least, make their experience better than my paranoid mind is envisioning it. In the meantime, I am researching and planning and contacting doctors that may be able to help...and researching some more.
My Plan of Action
I am depressed. I am distraught. I am frustrated. And I am a type-A personality. So, I don't sit still well. And I definitely don't give up without a fight. So, regardless of whether my children's tests come back positive or negative, I am on a mission. A mission to...
1. Eradicate this terrible disease from my family - if the kids test
positive, or my husband (I'll have to take that on in another post
2. Educate myself and my community of fellow parents (and anyone else who
will listen) about the risk of Congenital Lyme and how to prevent tick
bites and infection.
3. Get something substantial published on Congenital Lyme that parents and
interested physicians can learn from and act on, since to my
knowledge, there is nothing of the kind at this point. I am reading a
great book right now entitled by
Connie Strasheim. It is an excellent resource for anyone suffering from
Lyme, but there needs to be a book that is just as informative, just as
specific as this one that tackles Congenital Lyme and treating tick-
borne illness in children.
4. Inform local doctors who I come into contact with about the risks of
Congenital Lyme and how to educate themselves about providing successful
5. Support organizations that are conducting research on effective
treatment of Congenital Lyme Disease.
Now, I have taken many a course on goal setting and I know that setting goals is just the first step. So, with that in mind, I have done at least one thing, taken one step, towards achieving each of these goals: I started this blog; I had our children tested for Lyme; I've researched doctors specializing in treating children for Lyme; I've contacted the publisher and author of Insights into Lyme Disease Treatment to inquire about current projects and to hopefully plant a seed; I left a message for my Dermatologist with my diagnosis and encouraged him to research it, as he may have the opportunity to diagnose many patients present with cysts and refer out for effective treatment; I met with my Primary doctor to inform him of my diagnosis and find out his stance on the disease. He informed me I did not have Lyme Disease, despite my CDC-positive test (and a request for information from the Health Department), and offered to put me on anti-depressants (true story.); I created information packets for our pediatrician, primary doctor and OB/GYN, to be mailed out in coming weeks. And I made a donation to Turn the Corner Foundation , one of the few organizations funding research on Lyme.
I will not give up. I will continue my fight against this disease, and if need be, I will teach my children to fight too. And hopefully someone somewhere is doing research that will make a difference for children fighting this terrible disease.