I'm so happy to have found this forum. After many weeks/months of shuttling my nearly 3 year old daughter from specialist to specialist trying to find out what is wrong with her, I now believe she has lyme disease. We live in Oregon, but I think she may have contracted it during a visit to Wisconsin the past summer.

Her primary complaint has consistently been facial pain and headache. (which she describes in great distress as "something is stuck in my teeth!"... does this make sense to some of you as a way of describing teeth/jaw pain or nerve pain? There is also other joint pain complaints, sweating, stomachache, chills, and severe irritability. I have to rub her back for sometimes hours at night to get her to sleep. Tonight she screamed that someone was tickling her shoulders, and kept yelling at me to "get them off me". Well, I'm kind of freaking out at this point.

After reading so much about problematic diagnosis and treatment, I understand the urgency in getting to the proper doc from the get go. How do you advise I proceed? Do I go through my pediatrician? Do I just go out on my own to find doc? I have read that it is difficult finding docs in Oregon. I am willing to travel to get the right diagnosis/treatment. But what do I do if there is a wait for appointment?

Thank you for your help!
Mary
 

If she has Lyme, you are fortunate in catching it soon. Our son was born with Lyme, but it wasn't caught until he was ~14 years old.

What I have found, it is better to go to a LLMD, rather than the local Ped. I wasted 10 years in the NW without getting a diagnosis. Had to fly out to Boston to get one (it was a easy diagonsis for an experienced LLMD). If you have to wait 2 weeks to see a LLMD, that is OK, after a 6 months, 2 weeks is not going to make a difference.

In the long run, you will be far ahead by going to an LLMD

Hope this helps,

Ernie

 

I feel sorry for your little one and hope you both get some relief soon. If you want dr. Jones phone number e-mail me and I will be happy to give it to you. We dont usually mention doctors names on here but Dr. Jones has given permission. Im sure many people will be on soon to help also.
Pattiecake
 

Dr. Jones is the best to consult in the case of little ones. If you have a pediatrician who is open, Dr. Jones would consult, and your local could prescribe.

Read Treatment of Young Children to see what others have to say about treatment for really young ones.

The doctor Ernie is referring you to has moved, and is now in Nevada City. If your pediatrician won't help you, I'll be happy to send you his name and phone number. However, you should also contact DR. Jones, as most of the LLMDs are not familiar with treating children.

Mine has told me he is not comfortable treating children because they respond so differently than adults. So you want to have that experience backing you up.

You might also want to contact the local support group for more local feedback. It helps to be in touch with others going through it. Look under Support Groups to find the one in WA.

Stick with it. Effective treatment is possible, but will be much more long term than people anticipate, so be as patient as you can, once proper treatment is started.

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Sonoma County Lyme Support
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Or, should I wait on having any blood test done until I get in to see a LLMD? I just don't want to waste any time. I would definitely like to contact Dr. J to see about phone consult or possible visit -- but it seems like it could be months, is that right? And I will contact local support groups too.

 

Here are my thoughts. Your daughter has symptoms that may include some of the coinfections. It will be easier on her if she doesn't have to have blood drawn too many times.

I suggest you call Dr, Jones and the LLMD in N. California on Monday. See if you can get advice on exactly what tests should be done, and if possible a script for them, to be done before any appt, whether it is by phone or in person.

You could then take that script to your pediatrician, if you feel she/he might be open. If they are willing to order the exact tests from the exact labs, use them. If not, you may want to cut the ped out of the loop.

This will give you a good shot at insurance coverage for the tests, though some insurance will cover tests ordered by out of network physicians.

If the ped is open, see if they are willing to consult with Dr. Jones, and prescribe antibiotics if necessary. Make sure the doctor understands this could mean months of antibiotics.

Look over this article on Two Standards of Care, and possibly take it in to your doctor. You might also take The ABCs of Lyme to give an overview of Lyme in children.

If your pediatrician is unwilling to consult, then you may choose to see DR. H. I'm not sure if you can get in to see him sooner than Dr. Jones, or if the trip will be easier, but it is an option.

Either way, if you can get the testing ordered, you can then start to organize the rest. It would be good for you to keep a journal of your daughter's symptoms, and any treatments she begins. Make sure you get copies of any tests she has done.

If she has already had tests done, you might begin accumulating copies of all her records. You have a right to these, but may have to pay for some of them. Its worth it to have them all in one place, and have them available for whichever doctor you end up with.

I know you want to get started immediately on treatment, but you may have to do these things first. Persist in getting in touch with the Lyme docs. You may have to call repeatedly. If you are lucky and get the cooperation of your ped, things will go faster.

I suggest you educate yourself both on Lyme and on the politics of it. That way you will be able to present your case in the best light. And keep asking question.

International Lyme and Associated Disease Society
Dr. Joseph J. Burrascano's Treatment Guidelines
California Senate Hearing on Lyme Disease
Scroll down to February 25, select Health and Human Services Committee, Lyme Disease. Scroll past the first ten minutes or so, it is blank. Amy Tan (author and patient), Ron Keith (Marin/Sonoma Vector Control and patient), Dr. Steven Harris LLMD, Dr. Raphael Stricker, LLMD, and others testify.

CALDA Intranets
Enter the site as a guest. Lots of info on framing the issue to get care.

The Lyme Times[ Magazine for Lyme Patients. Highly recommended to get the Summer 2004 special Patient Issue. Upcoming issue is on insurance issues. The one following I believe is on children's issues.

How to use the Lymenet Search
Treepatrol's Newbie Links

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Sonoma County Lyme Support
[email protected]
 

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Sonoma County Lyme Support
[email protected]