My daughter's Lyme IgM Western Blot came back positive for bands, 18 ++, 31 +++, 41 +, and 93 +. This is positive, just not CDC positive, right?

This was from Igenex and it says positive right on the top of an IgM Western Blot.

The PCR from MDL all looks negative, though.

Still, I know that there is not a good test for Lyme, but I believe with the available tests, my daughter is positive, right?

I am hoping this helps her get the correct treatment for lyme. I cannot believe that she already seems to have improved using the amoxicillan, though. I am so cautious in my hopes.

I am fearful in a let down for her and the whole family if the drug she is taking now stops working for her. Am I being too much of a worrier? I just see so many on here waver back and forth.

They did a lot of other panels, as well with MDL and Quest Diagnostics. They said that there was an insufficient sample to do the HLA-DR Antigens test, which I really wanted done.

Isn't that the one that I was just reading about on lymenet the other day (someone submitted a newspaper article) about the HLA-DR being a genetic marker for suseptibility to chronic lyme.

In other words research is pointing to those with the HLA-DR marker could be harder to treat for Lyme, should they ever get it. Am I right?

Please correct me if I am wrong. I don't want to lead anyone else incorrectly.

Well, sorry for the book, but I knew you were the ones to help us with her results.

I would like to take a moment to thank all of you that have taken time to write back when I have needed you.

Jones Criteria, from Dr. Jones handout
18, 23, 30, 31, 34, 37, 39, 83 and 93.

"There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18, 23, 30, 31, 34, 37, 39, 83 and 93. Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease."

Hope this helps.
Carol

We have been seeing C.R. in Huntersville NC. She has been very nice to us and did put her on Amox. 400 mg/ twice a day. As I understand this dose is low.

My daughter is feeling much better already though. I just wonder if it will be enough or if we should persue pediatric care for her? There was no herx that I could tell.

She did kind of have less energy for a few days, but I have seen that bad or worse from her during the course of this disease.

How old is your daughter?

My kids started off with Amoxy twice a day and had no real herxing but I believe my daughter did get alot better. My son has so many other problems that its too hard to tell.

How old are your kids? Is your daughter completely well and was it the amox that did it? How long did they have it before you knew it was lyme?

Do you mind me asking, did they both get it from a tick bite? All these children in families on lymenet having it, makes me get concerned that you can actually have more than one child in your family get it.

I just wonder if some actually have multiple cases within a family from tick bites.

After breathing a sigh of relief in knowing what it was all this time, then I was of course a bit sad for my daughter. Of course, then I moved onto thinking of my other children.

If she got it here at our house, I know my husband put out a bunch of pesticides to help control the tick population in our yard.

Our kids play other places though. I feel we cannot live in a bubble!

You poor thing two very sick little children. I cannot believe we are making it through having one, without our family falling apart. At times it felt like it nearly did.

Sorry for all of my questions. If you find any of them offensive just ignore them, please.

Yes, unfortunately , but good to know, Lyme. Thanks.

Oh, I forgot to add, there is no lyme in NC, you know.

A dr here actually told me - "We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime."

That was in 1991 & the situation hasn't
improved yet!

About the WB test -
On page 70 of "Everything You Need To Know About Lyme Disease", Karen Vanderhoof-Forschner says:
"Band 41 = flagellin protein of all spirochetes; this is usually the first to appear after Bb infection and is specific for all Borrelia."

A friend attended a Lyme Conference in CT a few years ago & told me that she learned that a positive Band 41 is VERY significant in children.
Positive band results from Lyme, Syphilis, & peridontal disease.
Of the three, Lyme is the only one likely to be found in children.

That info led to the diagnosis of Lyme disease in my grandson. Band 41 was the only positive band on his WB, but my dr followed up based on the few symptoms he had & Band 41 positive.

My kids are congenital lyme kids as I've probably had this for over 30 years and they are 10 and 12.

My kids both were born with incredible severe Gastroesophageal Reflux - so it was obvious from birth that there were problems.

My daughter was prescribed other meds but I later found out she'd barely taken them, I know she'd taken the amoxy because at that time I was really good about the system I used for checking to see if the kids took their meds.

So, I think the amoxy is what helped the most. Later she was on zithromax and plaquenil and I believe mino (maybe something else) but I know she wasn't good at taking them - hindsight here.

She has no physical pain except stomach issues which I'm not sure I can attribute to lyme. She does get migraines and takes topomax for that and a 'mood disorder' BUT the mood issues are also hereditary w/o lyme. So she is no longer on abx and I know that the amoxy helped.

My son is much more complicated - he was helped by amoxy alot too, but then went on to other meds which i later found out he didnt take so he's coming with me back to dr. J and probably starting again!

I wish you nothing but the best and your daughter.

Your child is NOT taking enough amoxicillin.

The HLA-DR 4 type is supposed to show a tendency toward auotimmune problems with Lyme, and correlates with "chronic Lyme." There may be other HLA types with similar implications.

Dr. J. would test HLA types as well as ANA's and anti-DNA's which show that autoimmune activity is present.

Hey about the docs; "We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime." Yikes! They cannot see the forrest for the trees!

Lymesux, I was wondering how much amox did your daughter take? Now I am suspicious as to how long this has been going on. I posted a few weeks ago about this.

I wonder if my daughter's lyme started a long time ago. She had very bad reflux as a baby. She would spit up across the room from a laying down position after a feeding. She looked like a fountain, Ewww.

In first grade she developed migraines and tmj. I posted a few weeks ago asking what others thought about when she was infected. It seemed as if I offended some people here.

I just thought it was important to know how long the spirochetes had been working her over, to tell what the proper treatment would be.

At that time I didn't know that the reflux she had as a baby could be a symptom as well.

The reflux has come back 10 years later along with all of these other symptoms. Now I am starting to wonder if she has congenital lyme.

I have had hip pain in the past and other aches, but always thought that was a part of getting older and the stress that having kids has on your body.

Lyddie, my llmd (actually NP) in Huntersville cannot see her again until July 14th. I completely hear what you are saying about the dose.

I am also afraid if I start getting pushy, she will not help us as well. Sorry I sound like a wimp, but I don't want her to "turn" on us. Please advise.

Does anyone know her well enough to say? Her initials are C.R. in Huntersville. She did mention possibly changing my daughter over to IV next if this didn't work.

We are getting ready to go on vacation and I know I don't want her herxing while we are at the beach.

We were trying to get to the beach before she was on meds that caused sun sensitivity and on an IV she couldn't swim. What to do???

Thanks everyone, you are all being so helpful. I really appreciate your help.

Means a 35 lb child needs about 800 mg a day.
A 50-55 lb child needs about 1200 mg/day.

Possible IV treatment -
For what it's worth,
Dr Charles Ray Jones, LD Pediatrician in CT,
(Phone 203 - 772 - 1123) is treating my 13 yr old grandson.

He has used several combinations of oral abx over a period of 1 1/2 yrs. He said he may have to go to IV, but he wants to try various orals first.

Would C.R. in Huntersville consider calling Dr Jones's office for a consultation?
She may welcome the input from someone who has treated over 7,000 children with Lyme.

Although, she has made note of telling me that she does things differently than he does as far as testing during the disease.

It is my understanding that he does Western Blots during the course of treatment, one every month, to check progress.

Our NP says her practice doesn't do that, they monitor it by patient feedback on a questionare.

The info. about amox dosing is quite shocking! I knew that Lyddie said it was way to low and her child had taken 2000 mg a day, but the fact that my daughter is taking what a 35 lb. child would take - not good!

My daughter is 78 lbs. She is a tall, thin 78 lbs. for her age. Now I have to find a way to gingerly approach my daughter's NP to seek better treatment.

Do you think it could hurt to wait one more week, as we are vacationing this coming week?

She is feeling so much better and I just want for us all to have a semi-normal vacation, before having to change her meds and her herx really badly.

At our church's VBS today I told all the friends that have been asking about and praying for my daughter, that her test was positive.

It was such a relief to all of them to know what was causing her pain, so we can help her. Some of them felt weird about being excited.

I agreed it is weird, like winning the disease lottery, but you have to know what something is to treat it properly and get healthy again.

I have started spreading the word at church as well as anywhere people will listen, to be cautious with their children and this disease.

I found myself explaining it to a server we had at a restaurant this past weekend. She was very receptive.

Anyway, I have found people listen well to information that can help them keep their loved ones healthy. Most of them are clueless, like I was.

I've been to 2 of his 5 appts & Dr Jones didn't emphasize the WB any more than all the other tests.
I don't think there's a questionaire after the first visit. He talks with the parents, my grandson, & checks him carefully to see what neurological changes he sees.

They do a lot of lab work, but most of his retesting has been for possible co-infections.
In spite of several negative tests, Dr Jones has not ruled out Bartonella & possibly Babesia. He said the tests for co-infections are not any more reliable than the tests for Lyme disease.

Our LLNP mentioned that Dr. Jones retests frequently (I thought she said monthly) using the Western Blot to see if his treatment for the patient is working.

She was just saying they have two different ways of monitoring progress.

I wouldn't be concerned about what he is doing, Dr. Jones has more years of expertise on his side than anyone in the field of treating pediatric lyme.

I just called a while ago and challenge the dose for my daughter, asking for a higher dose of amox for her.

I did ask the triage nurse to ask if we could get the stronger abx, but keep her on her current dose until we return from vacation and would that be safe?

My daughter is doing so much better that I am not having to carry her around anymore. There have been fewer emotional outbursts.

My husband and I feel that she has been more herself than we have seen in a long time.

Thanks Cbb, I hope I didn't offend you. Dr. Jones is excellent and a very smart man.

I just wondered if their (Dr. Jones and our NP) differing opinions about following the progress of patients would get in the way of them collaborating on treatment of my daughter.

Thanks for all of your advice. Anything else that you or your daughter could add is appreciated.

BTW, a church friend's son just got diagnosed with acute lyme and was treated with 2000 mg a day of amox.

We have complete confidence in Dr Jones & what he's doing. The man is awesome.

I have no info about how many children the NP treats, or what treatment protocol she uses, or how progress is measured, so I'd never express an opinion on what she's doing.

Just wanted to try to give you a clearer picture of the differences between the 2 offices.

With email we lose so much communication. Without voice inflection sometimes you cannot tell if you upset someone or not.

Unfortunately, I worry all the time about what people think about what I said and how I said it.

I agree as long as my daughter gets better using this NP I am alright. Like anybody else, I want the best treatment, with the least stress, possible.

What do co infections look like on bloodwork?

I found more numbers (results) that I really don't understand from MDL.

Also I am going to post a new post for someone whose daughter has been put through the medical wringer.

She has a lot of lyme symptoms and the mother was satisfied with her lyme testing until she found out about the "real lyme tests" from me today.

quote:

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Originally posted by ivebinlymed2:
Lymetoo, you get the "to the point award" of the day!

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hehe! I was short on time when I saw your post...just couldn't keep my mouth shut....so what else is new!!?

I'm so sorry you're dealing with this, but I know we can help you get your daughter well!

I hope there is something here tomorrow. I am still perplexed, but then again with this disease I pretty much stay that way!

Happy ZZZZZZZs to you!

Oh, forgot to mentioned that the NP refused to up my daughter's dose of amoxicillan today, saying that she wanted to evaluate her on the current dose first.

I've told you all I am sure that the earliest appt. I can get is July 14th. I called to get on a waitlist today.

I find it so frustrating that it took us 10 mnths to find out what was wrong only to have our daughter on a low dose drug, just enough for a kid half her size! ARGHHHH!

I have just lost my patience with all this mess!!! We know of acute cases with kids that have been put on 2000 mg/daily right away!

Never feel you are being too pushy, its your job as the patient/mom to get your child well.

As for reflux - both of my kids were born with severe reflux - they ended up having major surgery for it (who knew about lyme then), my daughter still has a few stomach problems but nothing bad. My son has constant esophagitis due to hypotonia which he was born with.

I do believe the reflux is a sign of lyme or due to developing inside of you while you had lyme - personally I'm having a hard time with that distinction with my two kids. I'm so sorry for you.

Both of mine also have migraines and my daughter has TMJ and insomnia which is totally controlled by meds.

I would definitely wait til after the vacation for the stronger meds, let her enjoy her vacation.

I can not tell you how sorry I am that you/she are going thru this.

That must have been really difficult to figure out when they were so little!