Questions! and need LLMD in Portland, OR for 2-yr-old

Hi all. I'm new here today and am hoping for some help from all you experts. We apparently returned from a rural area in Arkansas last week with a Lyme disease souvenir. After diligent nightly tick checks, I still ended up removing a tick from just inside the hairline of one of my 22-mo-old twin daughters. I was pretty sure it had been attached less than 24 hours, and Lyme is supposedly not in that area, and not carried by the type of tick removed (lone star), so I just kept an eye on it and tried not to worry. Nine days later I spotted what looked like an EM rash, called in immediately for an appointment and she was started the next day on a 3-week antibiotic regimen of Amoxicillin. If I'm reading it correctly, she's taking 600mg/day (400mg/5mL= 1tsp; 1/2 tsp 3x/day). She started the Abx 10 days after tick removal.

I've seen first hand what Lyme can do if not effectively treated early, and am trying desperately not to panic. I feel completely responsible and so, so miserable about this. I'm afraid I'll be worrying for the rest of my life about this coming back and destroying my daughter's health. I've been reading up on this for the past two days straight, and have more questions than answers at this point:

1) Four days ago when abx were started, the only symptom was the EM rash. Two days into it, she's developed a runny nose, sneezing and fever. I'm assuming she's just developed a cold with an associated fever. Is it possible that, with such an early stage case, a lyme-related fever would appear two days after abx are begun?

2) I read that min. dose for toddler would be 50mg, max 1500mg. This seems like a huge range, but it appears our current dosage is ok? I've also read that if no other symptoms, 28-days min, 6 week min. and 6-8 weeks. I'm all for going longer, but it's very disconcerting to see so much conflicting information, all of which exceeds our current prescription. Can I assume 6 weeks is long enough, even with the possibly suspicious fever mentioned above?

3) Then there's the whole debate about Lyme not existing in the south. I read all about how the Lone Star tick can, instead, carry a different but similar strain that's not exactly Lyme, but has similar symptoms and treatments. Does this mean none of the Lyme testing will work? Is there any way I'll ever be able to know what's going on and if it's completely gone? It's looking like the answer to that one is NO. I passed on the test (not sure which one Dr. was referring to) at our appointment because it meant a full blood draw with results not due for a week. I didn't want to wait, and didn't want to put my daughter through a blood draw if it wasn't going to change the treatment I was already decided on. Should we have done it? Is it too late? Bite was 6/8.

4) I trust our pediatrician, and she was very quick to recognize the risk and prescribe abx, but I would now feel much better armed with a lot more information, and don't want to find out later that we didn't do enough. It's possible that she might be receptive to any additional information and resources I can provide, and may extend the dose to 6 weeks if I send her the ILADS Treatment Guidelines (is 2008 the most recent version?), but I'd also like to find a LLMD in the area to meet with, as well. Does anyone know of one who can treat toddlers?

Sorry for such a long post! I stumbled onto this forum today and have read a lot of great, supportive information here, and am hoping someone can help me process all this.

Thank you in advance,

Holly

So sorry you are dealing with this, Holly Golightly!

It's not right that you have to worry about inadequate treatment....

I don't have a lot of answers for you, except on the amount of amoxicillin. In the guidelines, it says the amount should be 50 mg per kg per day. - That amount divided into three doses. So you can calculate based on that formula.

Finding a LLMD that treats children may be difficult.
I will contact our veteran moderator, Traveler and see if she can help with this.

Here are the latest ILADS guidelines.


www.ilads.org/lyme/treatment-guideline.php

There is a link to the 2008 Dr. J. Burrascano (LLMD) guidelines...which is obviously supported by ILADS

Hi Holly Golightly!

Welcome to our community! I'm glad you found us.

First thing you should realize is that there definitely IS Lyme in Arkansas!! I live in North Central Arkansas and there is Lyme all over the place! The doctors here will turn away anyone with a bulls eye rash in order to not have to treat it. I've talked with numerous parents about this - it's completely disgusting. I've also had many doctors tell me that they "just don't want to take on such a complicated case" right now. If they aren't treating it, they don't have to report it. Believe me, it doesn't matter what strain of Borrelia it is, Lyme disease is still Lyme disease. Those that use that argument are only grabbing at straws trying to prove their point - and not very well.

We also have a lot of the other infections that often come with Lyme - Bartonella, Babesia, RMSF, Anaplasmosis, Ehrlichia, Tularemia and others.

Next thing we need you to realize is that this is NOT your fault. There are only so many things that can be done - you were doing the tick checks nightly, and since you know what it's like, I'm sure you were thorough. It's just that those darned things can be sooo small and when in the hair or hair line, they can easily be missed.

Know that the dosage of abx is calculated to the weight of the child, not the age - and that 3 weeks with symptoms isn't enough.

For an EM rash only - the ILADS recommendations are:
" Pediatric dosing for the individual agents is as follows: amoxicillin 50 mg/kg/day in three divided doses."

http://informahealthcare.com/doi/full/10.1586/14787210.2014.940900

So if she weighs around 26.5 lbs (& my math is right) she is on the right dose.

Not much is written about children using Amoxicillin in his paper "Advanced Topics in Lyme Disease", but the author, Dr. Joseph Burrascano, states :"Because of its short half-life and need for high levels, amoxicillin is usually administered along with
probenecid. An extended release formulation of amoxicillin+clavulanate (“Augmentin XR”) may also be
considered if adequate trough levels are difficult to attain."

So I would be questioning any doc that didn't prescribe probenecid with Amox. in order to avoid possibly not treating aggressively enough.

The other thing you can do is to start her on an herbal protocol, such as Buhners to help cover whatever the abx miss: buhnerhealinglyme.com/the-protocols/


Yes, 2008 is the most recent version of the ILADS treatment guidelines.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​trained​ LLMD in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can also email the Tick-Borne Disease Alliance at​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

The Amoxicillin has a very short half-life meaning the blood levels of it don't stay high for very long.
The Probenecid is taken to keep the blood levels of amox up for a longer time.

I forgot to mention - the Probenecid - you may need to get it from a compounding Pharmacy. I know here in Canada, that's what I had to do. (if your daughter does get it prescribed)