I've read about this happening and read about it again and again, but until it happens to you, you don't really know what it feels like.

I feel a bit like I'm standing in the middle of Antartica, by myself, cold and scared with no one to come to the rescue.

What about the "Hippocratic Oath" taken by every physician?
It includes "...may I long experience the joy of healing those who seek my help."

Can't remember the details of your daughter's case & what treatment she was given. (is she 3 yrs old?)
Does she still have symptoms?

In the meantime, we went to a LLMD who extended the Ceftin rx to 6 weeks which the pediatrician agreed to.

Next LLMD appt, treatment was left up in the air. Frantic mom that I am, I called twice for more Ceftin so that her tx would not be interrupted. I've been promised that the Ceftin will be called in on Monday, but past promises have been broken, so I'm scared.

In the meantime, I scheduled a phone consult with Dr. Jones (who cannot rx w/o at the very least having seen her records - if even then - understandable).

We've spent over $3000- in the past 2 months to get the help our daughter needs. Now that the pediatrician has turned a blind-eye, every last cent is going to be out of pocket from here on out.

I almost went into hysterical-bizarre-crazy woman laughter when our $700.00 HMO insurance bill came in the mail yesterday.

None of this makes any d**n sense at all! Lost in a lost world.

To top it off, the pediatrician made me feel that I was jeapordizing the health of my daughter by having her on extended antibiotic treatment. GUILT! She also made me feel like I was a nutso who's resorting to 'voodoo' type medicine to "cure" my daughter when she's already "cured" in her opinion. INSULT! DEGRADING!

Oh, yeah, and given the above, no, she is not willing to consult with Dr. Jones. What's that saying? She's "brushed her hands" of the whole ordeal.

[This message has been edited by heartsickmommy (edited 20 November 2004).]

This is one of those times.

Your stories would be helpful to a lot of us newer members.

My insurance [not an HMO] reimburses me 80% for my LLMD's charges. Otherwise, I don't know what I would have done myself!

I hope you can arrive at a solution to this problem. I'd be heartsick too!

The best advice would be to have her evaluated by Dr Jones, but it would take a while to get an appt. She needs treatment now.

I suggest you ask for a copy of your daughter's medical records from the pediatrician & anyone else who has seen her about the tick bite.

Do you have a dr you could work with?
He/she could FAX the records to Dr Jones if
it's set up with Dr Jones's office first.

You don't have to have a pediatrician.
Maybe the LLMD you mentioned would treat her.
A concerned Family Practice dr could work with Dr Jones.
If you have a dr there who will work with Dr Jones, then you may not have to go to CT for now.

Do you have the following info?

Dr Charles Ray Jones
New Haven, CT
Phone: 203 - 772 - 1123
FAX: 1 - 203 - 772 - 0682

For info about Dr Jones: www.wildernetwork.org/LDpediatricfund.html

Also, you could contact the Lyme Disease Association in NJ about their new fund to help with children's treatment for LD.
It's a wonderful program, but I don't know any of the guidelines for selecting who gets help & how much they receive.

I found my information, and subsequently, our LLMD (I too have Lyme)here on lymenet. Without this site, I would still be fumbling in the dark.

All 3 of us finally got diagnosed, treated, thru the LLMD we see (in S.F., yes the famous one). All paid for out of pocket, because both boys have HMO's, which paid nothing, and the LLMD only took my PPO insurance for the first year, and then like so many other LLMD's, stopped taking all insurance, and only took cash up front, with me trying to get reimbursement via a superbill after the fact.

So, I can so far, relate to all you've been thru with your 3 yr old. In my instance, my oldest had symptoms beginning when he was 7 yrs old, and did not get diagnosed, or treated for 3 yrs after his initial symptoms, and my youngest son, woke up on his 5th birthday, with leg pain so severe in his one leg, that he could not walk. We thought at first he had bone cancer!

So, as traumatic as it may seem that you're dealing with all this with such a young one, there are those of us here, who are still here, years later, who have walked in your shoes, and can relate.

You are not alone! In the days to come, you will realize that, and you will be able to assimilate a lot more of what you are reading here.

It took me years to come to grips with not only having this disease myself (tick bite in 1987, symptoms come and go in that time, until finally diagnosed myself w/ Lyme in 2000) but also, with realizing that my young children, were also infected.

I went thru the searching of trying to figure out if I gave this to them via pregnancy (breastfed both of them), or being the former outdoors mommy/woman that I WAS, if toting them hither and yon to Mt. Diablo, Mt. Tam, Angel Island, hiking in Briones park, etc., I exposed them unwittingly as babies/young children, and they got bit by ticks that I never found.

I'll never know. The sheer relief of finally, finally, realizing that fact almost broke me down.

At least you know! You not only found ticks on your daughter, but EM rashes as well. Not that that is any blessing in itself, but at least you KNOW. Some of us will never know how our kids got this, if we gave it to them one way or another.

You also got her diagnosed, and on abx so quickly. Both my boys, from the time of their first onset of symptom(s), took on the average of 3+ YEARS to reach the point you're at with your daughter.

There is so much to be thankful for. Dont' get me wrong, I am not telling you to be thankful, only to feel gratitude that you are where you're at now, and not fumbling around in the dark, god knows how HMO hells go here in the Bay Area, wondering why? why? why? is it cancer? is it something else? What is it? What what what? I did that for 3 yrs for my boys, and oh, I guess 13 years for myself.

And still, we are not "cured", probably never will be. But I only reached that conclusion after reading stuff here for 4 yrs.

It'll come, give it time, and then you will find peace.

DJP - That "other" quack is the infectious disease doctor. He is the one who has been dictating treatment protocol to our pediatrician, so I'll get no help from him. I don't know when Dr. Jones will be getting the medical records since I didn't receive the packet in the mail today. I'm going to overnight the info to his office as soon as I receive the packet, but then there's the Thanksgiving holidays to worry about....

Lymetoo - I did book an appt with Dr. Jones in early March (1st available appt). The twist in our situation is that we have enough money in savings/retirement fund to cover her medical expenses, but at the rate the money is flowing out for her treatment, my whole family will be eating cat food for dinner within the next ten years.

cbb - Like I wrote above, yes, we do have an appt scheduled w/ Dr. Jones. I have every medical record, lab report, photos of rashes, etc., that have ever been written up aside from this past week when the ped cut us off. I have no idea what she put in her file about that, but I will get ahold of it. About having our LLMD fax over the info to Dr. Jones - his office cannot accept a file as large as the one I have for our daughter. And even if they did, I'm still awaiting a packet that they're sending me which contains 6 sheets of paperwork that needs to be filled out before Dr. Jones can consult with me via phone. Jones' office said that they can only accept 6 pages of fax at a time anyway. The LLMD is the one who is supposed to be calling in the Ceftin refill on Monday, but as I said, promises have been broken before so I'm afraid that it's going to happen again. As far as the LLMD working with Dr. Jones goes, she told me that she was very happy that I had scheduled a phone consult with Dr. Jones and that it made her very comfortable that I will be working with him. I'm sure if pushed, she would consult with him, but it came across to me in no uncertain terms that she was very happy for ME to work with him. ME. And, yes, my daughter does still have symptoms. They come and go...wax and wane...but they are most definitely present.

Thank you for that!!!

It seems that all of the Dr's I have seen in my area are ignorant when it comes to Lyme.

WHAT IS UP WITH THAT?

I have only been familiar with Lyme since August of this year so I still have much to learn. But I have learned alot so why is it so hard for the Doctors to understand?

I was reading this post and wondering if you were able to get your daughter's Rx?
I understand your story all too well. Mine is not the same, but similar.

The ped that I had for over a year with my girls(I have a 7 1/2 yr old and 17 mth old) refused treatment for my oldest daughter who had a CDC positive Igenex Western Blot. I do not remember if it was IGg or IGm, but none the less a POSITIVE test with MAJOR symptoms!!

I fired him. (by the way....both my daughters, myself, and my mom have been dx with Lyme....my husband has been tested and shows pos bands with symptoms)

Made an apt with my mom's LLMD and went to the same local family Dr. that she is seeing.
He was willing to start us all on abx till we got to the LLMD.

I have not received any reimbursement for our actual apt yet, partly because I have not filed my part....DUH!! (I am a big procrastinator!!)

I also am having some problems getting some of my abx ....like zithromax, they only wanted to approve for 10 pills in one month....that would not do ANY good!

I told the pharmacist that would be a waste of time, and strangely, he seems to understand and does not look at me funny about the whole thing. (when some of the fill-in pharmacist are their, they do not understand what is going on, well.....I have not told them, that is one reason!)

He is very interested in what is going on and seems to be thinking "outside the box".
They finally approved 20 pills, but I have to call them tomorrow. That is some of the problems I am running into. My pharmacist old me that 30 pills of zithro was going to be $200 something.

I surely could pay, but just about refuse to. Why should you pay when you have Ins that is suppose to pay for the treatment that your Dr. has you on? I have not had a problem with them approving the other pills I have been taking. That is just pure-D strange to me.

Anyway, sorry for rambling
Take care of yourself too.

Amanda

Thanks to all of you who have contributed to this thread. It really does help a lot.

On Monday, with heightened emotions and frazzled nerves because my daughter's RX had not been called in by late afternoon, I called our llmd's answering service (can't get through to a live person ever) and kinda screeched into the phone, "PLEASE, call in my daughter's prescription now!" We didn't have enough Cefting left to give her her p.m. dose.

So, later we went down to the drugstore and the doctor had called finally, but everything was all messed up - long story - and after gabbing with the pharmacist & having her call our llmd back, we finally got her more Ceftin. (thank god!) We're covered for approx. 15 more days, but that's when our llmd will be on vaction (figures, eh?), so I'm hope-hope-hoping that Dr. Jones will be able to RX his recommendation after our phone consult. We'll see!

Why, oh, why does this have to be so hard?

You're doing great! I know it is really hard. There are so many things to track. But you are keeping your eye on the most important thing, and making sure it happens.

As far as the PCP, I highly recommend you go to the CALDA Intranets Site You have to enter as a guest, a tiny little option on the left side of the screen.

CALDA has lots of info on how to frame the issue of treatment when approaching doctors. It lays out a non-confrontational, but active approach to the issue of the standard of care for Lyme disease.

They also have resources for fighting insurance companies, including HMO's. There are a few people in CA who have gone after Kaiser for lack of treatment. You probably don't want to focus on this now, while you are struggling just to get treatment, but you might want to see how to document.

We also have links on our yahoo group that are available to the public on how to get proper insurance coverage. If you have insurance, they should be paying for the treatment.

Try to enjoy your holiday time. You have treatment covered for a couple of weeks, so you can afford to take a day off. You need to keep rested as you go through this, so you can keep going. My best wishes to you and your family.

See, you were right. I ran myself into the ground and am suffering for it. Sick as a dog today and cooking Tday dinner on top of it. :lol

But when my strength returns, and A is finally on the right track, I will start focusing on a 'counter-attack', for lack of a better word. How did those other people fare that have gone up against Kaiser? Are there any public documents available re: their situations and the outcomes?