I wish I could say that's uncommon, but sadly it's not. I suspect I have "nut case" written on my folder at my PCP's, and until recently, it's just been easier to continue going to the same guy (history, and all that).

I'm seriously thinking of making a change in my PCP, and maybe that's needed in your Ped's case too. I'm thinking, if my dr's coming in with a roll of his eyes and attitude that I'm making up sx, how on earth can he treat me effectively?

Sorry you're going thru this!

We have ticks everywhere on our place. I really want to move but between how I feel and the economy that probably won't happen anytime soon. We have 30 acres of big woods right in our backyard. We don't have to leave the yard to get ticks. My 2 grandsons were here this spring, and they BOTH got ticks. We checked,we bathed, those miserable little nymph ticks attached anyway. A couple weeks after they left is when I got my positive for lymes back. My grandsons were having headaches, leg aches that woke them up in the middle of the night, vomiting off and on, and stomach aches. I begged my daughter to take them to the dr. and get them treated - to heck with the test, just tell the dr. they had been bitten by ticks and TREAT them NOW before it's too late. So she rushed them in. The dr. all but wrote her up for being an unfit mother. Argued with her to the point of tears that he was NOT goign to needlessly put her kids on antibiotics and that's what the problem is is overuse and yadayadayada. She finally called me from the office very upset when he had left to "check" on something. I told her to tell him they were YOUR kids and it was YOUR responsibility and you want the abx. SO she did. He called our county health dept. - who said there wasn't much lyme here, they had only had 2 reported cases of Lymes among kids this year. What the heck KIDS has to do with the reporting is beyond me. Adults get it, kids don't? Kids are less likely? I was so mad. She finally did get them some medication, but it's really hard it seems with kids, the little one got amoxi for a month, the bigger is alergic to many things and they had to special order soemthing which cost $100 a bottle and took almost 2 weeks to come in. Anyway, the point being this dr. was the same - down right ignorant and not helpful. And he also said Dr. Janeck lost his license for killing people, and these lyme drs were the whole problem.

Unfortunately the medical profession still does not see Lyme as a serios and transferrable disease. I will never forget when I found out that I had probably gotten it in eutero from my mom and also given it to my daughter that way. I thouhgt no-way is this possible.
Well finally seeing someone who was a LLMD was like an answered prayer. They are the ones who truly care about those suffering from this disease and wnt to help us get better despite all of the negativity they recieve. I have also found that alot of the LLMD out there have gotten into the field either because they had it themselves or someone close to them have it.
I am really hoping that the tables start to turn on the frontlines of Lyme treatment. I think we are always going to have doctors who think we are nut jobs or hypocondriacs (spell?). It took me almost 15 years to finally get a spot on diagnosis because I had it so long and didn't test positive to the regulare Lyme test not to mention everything else I was told I had.
Do you still have contact with the doctor that treated your Lyme? I just say if you believe that it what is affecting them not to give up, being treated yourself I think you already know some of the struggle. I will keep your family in my prayers and hope that all turns out well for you.

Hopefully if they were infected we caught it in time. I was adament they do it, and her insurance woudln't pay for the $100 a bottle (2 of them) abx so we paid for it to be sure they got it. Thankfully they have been FINE ever since. But we will always be wary. I was in my yard yestreday and came in with a deer tick crawling on me! I can't tell you how upset that gets me. Everyone around here says the ticks are worse this yeat than they have ever seen them.

Did you know you could have your yard sprayed for ticks? I realize that may be trading one problem for another, but sometimes you have to weigh things and choose one evil over another. Just a thought.

yes we found that out this year. we are talkign about it, though it would be very expensive since the yard is so big and we are right in the woods.Also hate to think of what it does to all the birds, etc. but like you said, weighing it out.

My peds gaveme no problem. I said I wanted them tested, I got them tested. Grant it, those tests aren't very good, but it's something. They're YOUR kids. Get a new pediatrician if they start treating you that way.

claired4 your not by your self. I just got diagnosed with lyme about 2 months ago .
I have no idea how long I have had this, all I know I been experiencing joint pain, arm numbing, swollen hand and fingers, and swollen foot. The joint in my knee erupted but has healed i I don't know if all this is related to my Lyme.

Anyways I was concerned about my kids b/c they are with me every where I go. I was not sure if they got bitten or not. I asked the kids doctor to do a lyme test on them. He acted like he didn't want to do the test.
The doctor told me he cant just do a Lyme test on them.

So I know what you are going though.

My pediatrician had the health department call her in a very accusatory tone and ask why she was diagnosing so many cases of lyme disease? She said that they were the ones with epidemiology departmnet, why don't they figure it out. She has diagnosed more children with this disease since meeting me than the whole state had 2 years ago. Which isnt saying much, the whole state had only 10 but now there are 11 at one pediatricians office.

Gee what would happen if they strated running this crappy test at all physicals along with cholesterol. even though the test sucks, it sure would open up some eyes.

Thank you everyone for your replies. I still have not had results yet. I have no reason really to suspect that she has it other than the fact that I've had it for who knows how long and she is only 3 years old. Also, she has celiac disease and my pregnancy was horrible. Anyway, I'm giving thought to changing pediatricians but that's difficult when we have a history there. We'll see.
Why are there so many Lyme-doubters? Do they think I don't have enough to do besides two kids and a full time job that I have to have an imaginary illness too?
Thanks again and best to all.

I think JulieGH gave part of the answer. Doctors get flak for ordering the test. Considering a full Lyme-plus-coinfections panel costs $660, it's no surprise insurance companies don't want to cover it. I think if they did, doctors would have less of a problem ordering it. But they would stlll hesitate because the test (WB at least) is so damn fallible.

I don't know why Lyme is not considered a bigger health hazard; if it were everything about this maddening situation would change. For one thing, they'd find the research $$$ and time to finally find a better test.

I'm sure you can find someone to order the test but you'd still be stuck with the uncertainty and the difficulty of treating a three-year old with multiple problems (celiac + Lyme). A terrible situation any way you look at it. I hope she doesn't have it!

-FM

P.S. I'm hesitant to bring this up but claired4 mentioned in her response that if she had hepatitis or HIV it would be a different story... true, because both of those are a) deadly and b) contagious (by blood). Lyme is very rarely fatal and has not been proven to be contagious the way these other two (and the flu, and H1N1) are. (I'm not saying it isn't - just the medical community doesn't believe it is.)

The only argument we have is that Lyme can be crippling when not treated and that costs even more $$$ than the tests and abx do. I'm not convinced that anyone (except maybe some docs, nurses and LLMDs) really care about our health anymore. It's about the money.

-FM

Did you get your daughter's test results yet?

UCSF made my husband and I feel like we were nut cases. We came out of the last appointment humiliated and angry. His previous doctor has cancer, so retired, and were assigned to another. Although the previous doctor didn't make the diagnosis of Lyme (I believe because of the CDC recommendations & negative ELISHA test), he was a great doctor and respectful of his patients.

When we finally discovered that my husband had Lyme (diagnosed by a local doctor), we brought a copy of the IGenx test to show the doctors at UCSF, thinking that they would find it interesting and significant. But they looked at us like we had horns on our heads- one doctor pointed to the test and quietly said to the other, "See, they used a SPECIALTY lab" - wink, wink- code for "we're dealing with loonies here."

It was disconcerting and upsetting to be treated in such a condescending manner- never experienced that before. It was a good experience in that it made us more empathetic to what others go must through routinely.

Thanks for giving me an opportunity to vent, because after a year I still am angry!

LB, I'm wondering maybe they weren't shaking their heads at you when you showed them the Igenex results? Maybe they were acknowledging that their usual lab wasn't the greatest? After all it was UCSF and they probably don't have money for the best labs... like you, I would have expected them to be more interested.