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Whole Families with Lyme Disease

Elizabeth Large, NDElizabeth Large ND

This summer I spent 10 days in Pennsylvania and Connecticut on a mission to learn how two well known Lyme literate doctors treat pediatric Lyme disease. This preceptorship is made possible by an ILADS scholarship for those wanting to expand their knowledge in treating Lyme disease. The first three days were spent with Dr. Ann Corson (see a slideshow of Dr. Corson’s practice philosophy) who practices in a town barely making the map in rural Pennsylvania. Dr. Corson is an integrative doctor who treats both adults and children. She has incorporated a well rounded natural approach as well as using antibiotics as needed.  I was impressed at her advanced knowledge in natural medicine and her open-mindedness to

all approaches. In two days I saw two families with Lyme, one from Canada and the other from the UK. Both mothers had Lyme and had passed it to their children through pregnancy.  All were doing very well and making great progress in their treatment.

To take advantage of my stay in Amish country, Pennsylvania, I stayed at rural farms where I enjoyed feeding baby goats and watching the Amish drive by in horse and buggies.  As a California girl, I was unprepared for the degree of heat and humidity, which put a slight damper on my sightseeing enthusiasm.  However I did make it to the Wolf Sanctuary in Lititz, an outdoor Lyle Lovett outdoor concert in Brooklyn, and sundown strolls around the incredibly beautiful campus of Yale.

Elizabeth Large ND with Charles Ray Jones MD

The following week I spent with Dr. Charles Ray Jones, a pediatrician specializing in Lyme, in New Haven, Connecticut. It was such an honor to work next to him, and witness his incredible commitment to treat these sick children, putting his own career at risk. At 83, he works 6 days a week and gives his all to his patients.  Similar to Dr. Corson’s office, it was common to see a whole families with Lyme coming from different parts of the country. It appears that there are no states where Lyme does not exist. Many patients traveled from Arizona and Texas. Most stated that their pediatricians were not willing to prescribe antibtiotics for these kids. A parent from Texas, who works as an epidemiologist, reported that a recent study of random ticks in Texas found 1 in 4 were infected with Borrelia. (California rates run between 2%-15% of ticks being infected, depending on location and stage of the tick, with nymphal ticks having the highest infection rates.)

In most areas of northern California where Lyme disease occurs, only about 1 to 2% of the adult Ixodes pacificus ticks and 2 to 15% of the nymphal ticks, on average, are infected with Borrelia burgdorferi. However, Lyme disease transmission risk can be highly localized. In one woodland site in Mendocino County, for example, 41% of the nymphs were found to contain Lyme disease bacteria.

UC Davis Intensive Pest Management

The most common symptoms seen in children are: optical convergence insufficiency, fatigue, stomach aches, headaches, learning disabilities, ADD, anxiety, and exercise intolerance. The majority of these children were Igenex labs positive for at least Borrelia and put on antibiotics for 2-6 years, gradually improving over time. It was inspiring to see these children’s lives returning after treatment.  I could only think about all the children that are going untreated for Lyme and co-infections and/or being put on unnecessary medications. When you witness the difference that an antibiotic can make in  the lives of these children, it becomes important to rule out all possibility of tick borne disease. I am grateful for this wonderful  learning opportunity with these accomplished doctors  and look forward to helping many children with Lyme.

Does your family have multiple members who are infected? What issues have you had to face in getting diagnosed, or in treatment when everyone is ill? Do you suspect your children may be infected?

Resources for Pediatric Lyme Disease

A Feeling for the Organism – Pamela Weintraub

Childrens’ IssueLyme Times

In Short Order: Blog Talk Radio – Dr. Ann Cordon MD – audio

Lyme Disease: a Psychotherapy Perspective – Lynne Canon, CSW-R , BCD and Sandy Berenbaum, CSW-R, BCD

Lymedisease.org’s List of Pediatric Lyme Specialists

Neurological Manifestations of Lyme Disease In Children  – Dorothy M. Pietrucha, M.D., P.A.

Neuropsychiatric Manifestations of Tick Borne Disease – Ann F Corson MD

Pregnancy and Tick-borne Diseases: Gestational Lyme – Charles Ray Jones, MD – video

Rationale for Prolonged Antibiotic Therapy in Treating Lyme Disease  – Charles Ray Jones, MD

Saving Our Children: Evaluation and Management of Pediatric Tick-Borne Diseases –  Scott Forsgren

The Pillaging of Personalities: Our Kids Are Being Hijacked by Spirochetes – Virginia Sherr  MD

What Everyone Needs to Know About Pediatric Lyme Disease – Ann F. Corson MD


 

Comments

  1. Hi Christian,

    There are a number of tests used for Lyme disease. Choosing which one partly depends on how long you may have been infected. In addition to the tests for Lyme antibody and PCR, there is a newer Lyme culture, as well as various tests that look at the body’s response to the infection. Your best chance is to see a doctor knowledgeable about Lyme disease, as they will know the best tests, the best labs, and how to interpret the test.

  2. Christian hanley says:

    Is there a specific test for Lyme disease ?

  3. Thank you for pointing this out. Dr. Shoemaker has a more current website, http://www.survivingmold.com. Even though this website is focused on mold, the treatment protocols are the same for Lyme neurotoxins, and Dr. Shoemaker has done a great deal of research since the chronic neurotoxins website was created. We also have many articles written by Dr. Shoemaker on our website, and many of our practitioners use his protocols. Treating the toxins created by the bacteria, as well as toxins released when the bacteria die is an extremely important part of Tick Borne Disease treatment. Dr. Shoemaker’s protocol is only one a numerous possible treatment approaches, depending on the patient.

  4. Please please please, everyone who suffers from chronic Lyme, please check the work of Dr Ritchie C Shoemaker. Long story short, it’s believed that borelia releases a neurotoxin which is responsible for all the long term suffering. Check out http://www.chronicneurotoxins.com form more information.

  5. We are a family of four from Maine with lyme disease. My two daughters see Dr. Jones. Their doctors back in Maine would not treat. My husband and I were also diagnosed with lyme this past year. They think I have had it for 18 years undiagnosed. Makes me wonder if I gave it to them during pregnancy. None of us have a known tick bite. Charles Ray Jones has given my girls back their lives. He is truely amazing! So glad you had the opportunity to watch him practice. I hope more do the same. I pray everyday that God will watch over him and keep him safe. We need him to help God’s children.

  6. Lyme disease and co-infections not being recognized by the mainstream medical world is a crime against humanity. It is hard to believe that in our country, land of the free, that so many children are prisoners to a disease that we refuse to acknowledge. This is stealing lives every single day.

  7. Hi Texas Mom,

    Tragic is exactly right. The good news is that once they start treatment, so many children respond well. How wonderful that your son is no longer on the autism spectrum! I hope your daughter responds as well when you are able to get her treatment started.

    If you know any doctors who would be willing to learn about pediatric Lyme, encourage them to get trained sooner than later. Dr. Jones will only be able to continue working so long. It would be a further tragedy if all he has learned in his lifetime is lost because too few people train with him.

  8. I am in Texas and it took 9 years to get my lyme diagnosis. My son who is 14 was diagnosed with adhd, ocd, aspergers and tourettes. We recently got his igenex test back and it is positive. My 7 year old daughter also has ocd with anxiety and hyperactivity. I am sure she also has lyme and will test her when we are financially able. It is tragic that so many families like mine have to suffer for years with no help from the medical community. My son finally started abx a few months ago and he is now a completely different kid. He is no longer on the spectrum.

    I had the pleasure of briefly meeting Dr. Jones. We desperately need more physicians like him and it is wonderful that ILADS is providing this opportunity to medical professionals. Thanks for writing about your experience.