posted
Please help... My five year old had a bulls eye and was treated for 21 days. After two weeks of treatment she has had a change of personality, she complains of her heart racing, she is not sleeping, and having neck aches. She was in the ER and they put a heart monitor on her. Lyme dr in ER said it is not possible to Lyme with having had treatment. I have a hard time believing that. Does anyone know a good dr that sees kids with an open mind? Please I am in NJ but willing to travel. Thank you!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good for you for finding LymeNet and asking for a doctor here.
21 days of treatment is not enough to get rid of lyme, so you are correct that your daughter still has lyme. Her symptoms prove it.
I suggest you contact lyme support groups in your area. See "support groups" on the left side of the page.
I suggest you ask them for names of lyme friendly doctors. These are doctors who don't actually specialize in lyme disease but will treat a person long-term if they have symptoms of lyme. They generally don't have nearly as long a wait time as a lyme doctor and they generally take insurance.
So, this is the first step in getting her some care.
I can give you the name of a top notch lyme doctor who, I am sure, would treat her the day you brought her in. But, it is an 8 week wait to get in unless there happens to be a cancellation. That's the way it is with lyme doctors. And, first appt is $750 and doc doesn't take insurance. The doc is in Washington, D.C. Let me know and I will send you the name. This is the type of doctor that you ultimately have to see.
For right now, I would take her to a walk-in clinic and say she had a bulls eye and now she is having these problems. Often, a walk-in clinic will give 2 weeks of meds just based on that. However, if you mention that she was already treated, they may not give you any meds.
Try a few walk-in clinics to try to get some help right now. Forget the ER. They are basically anti-lyme at all ERs.
So, in cases like yours, you get to whoever you can quickly and then also work on getting a great doctor for the long haul. This is a very serious disease, as you are already experiencing. It costs money to get a great doc who knows how to get rid of it.
You can take a train to D.C. so the trip is effortless. After the first in-person appt, you can do monthly telephone appointments. So, that's how it is handled.
There aren't many good lyme doctors (meaning doctors who actually know enough to get rid of the disease for a person), and there are even fewer who treat children. So, for a child, travel is basically the rule to obtain lyme treatment.
If you took a picture of the bulls eye, show that to whatever walk-in clinic you go to and to any lyme friendly doctor you can find.
To educate yourself on this complex disease and learn what proper treatment looks like, I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Your daughter is in the "Disseminated Disease" category now based on her symptoms. The discussion of that category of lyme begins on page 19.
As you will see on p. 19, after a bulls eye rash and if the child has no other symptoms, Burrascano says to treat for at least 6 weeks. So, now you see the difference in treatment by the general medical community as compared to the lyme doctor community.
Burrascano says to treat until all symptoms are gone and then to treat for 2 additional months. Once you get to a good lyme doctor who follows the Burrascano protocol (they all do not follow Burrascano), your daughter will be treated until she is well.
If you don't already know, lyme disease is caught up in the middle of a major medical controvery. The general medical community has been taught by the IDSA (Infectious Diseases Society of America) that lyme is rare and easily cured. That's why the ER treated you the way they did.
The lyme doctors know that lyme is worse than an epidemic and that the disease is highly complex and difficult to cure. This disagreement has gone on for at least 25 years with no end in sight. So, it makes it difficult for people in your situation to get good care.
There is a video on YouTube that explains the controversy. It was done by a Boston TV station a few years ago. Here is Part 1 of the Boston Chronicle video on YouTube:
I suggest you watch the video a few times so that you understand the controversy and the part the IDSA is playing to make treatment for lyme disease so difficult to obtain. It is for fear of the IDSA that doctors don't have an open mind about lyme disease treatment. Their medical license can be at stake if they ignore the IDSA treatment guidelines. Your daughter was treated according to those guidelines. So, the IDSA has proclaimed her cured regardless of her symptoms. That is what you are up against.
Let us know how we can help you further. We would be happy to do so. We will answer any questions you have.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you so much for all of the information. I must say that I have never thought of taking her to a walk in clinic and I do have a photo of the Lyme bite. I will definitely review the videos as well as the other material. I you could give me the name of the dr in DC I would so appreciate it. Maybe they will have a cancelation. I want to get her what ever care she needs. Thank you again!
Posts: 6 | From Morristown, NJ | Registered: Oct 2012
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Yes, the wait is long for Lyme-literate doctors (LLMDs). You can try calling every day for cancellations or ask if they have a waiting list.
Patients have been able to get in earlier using these techniques. The wait will be worth it when you are able to finally get your child the help she needs!
Posts: 8991 | From Illinois | Registered: May 2006
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posted
TF, Thank you so much. You are a wealth of information and I so appreciate it!! Julie
Posts: 6 | From Morristown, NJ | Registered: Oct 2012
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
It's amazing there is a controversy to this insidious disease and I've found it easiest to show a couple of u tube video's on the controversy.
He is a saint and I show this to help illustrate how MD's have been prosecuted so normal MD's shy away from doing anything but following the flawed IDSA guidelines.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you all so much. I am so glad to have found this site. I have found a Dr that will see her next week but I am concerned about if he is good. Has anyone heard about a dr in Staten Island NY? I am on wait lists for others that you have provided as well.
Thank you all again!
Posts: 6 | From Morristown, NJ | Registered: Oct 2012
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posted
I have heard there is in Staten Island who is a pediatric infectious disease doctor - I don't know of him personally but I would be a little concerned with going to an ID doctor. If you want to go the ID route, there is one right there in Morristown, but I'm not sure if he treats children. You can PM me for name.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Jco - please stay away from ID doctors unless they are Lyme-literate and ILADS.org trained (I don't even know if there are any - maybe a handful?!).
They have no idea about this horrible disease and its complex treatment. Infectious Disease doctors follow flawed guidelines and believe one course of antibiotic treatment is sufficient.
That's why so many under-treated patients get sicker and the disease goes deeper into their bodies, making it even harder to treat!!
Documented studies show that the bacteria which cause Lyme disease can still be found even after long-term antibiotic treatment! Speaks volumes about this, doesn't it?!?!?
You need to stick with the Lyme-literate doctors (LLMDs) that were suggested to you. Don't waste your time with any others!
Posts: 8991 | From Illinois | Registered: May 2006
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