Would it be out of line for me to call IGeneX labs and ask them to send me copies of the results here to our home?

If they will send them to me, would my daughter's LLMD be insulted by my having done this when we see her again in two weeks?

Can I also ask IGeneX to send copies of the test results to my daughter's HMO pediatrician?

Thank you so much,

Toni
 

Check with your doctor and see if they will fax you the results when they get them. Some doctors prefer to see you before giving out the test results. You do, however, have a right to get a copy. If you don't get them before the appt., ask them to make you a copy at the end of the appt.

They are required to let you have copies.

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Sonoma County Lyme Support
[email protected]
 

You really have been our guardian angel through all of this.

Thank you so very much for all of your help.

Toni

(been wanting to email you, but don't know what to say. don't want to unload on you as I see that you already have such a heavy weight on your own shoulders as it is)
 

Sometimes I'm not immediate with my replies, but I will get back to you. Also, Cave76 from Lymenet will answer you if you use the lymeinfo addy rather than my personal e-mail. Two for one!

And, last option, you could join our yahoo support group. Click on the link below, you can look it over. That way you could ask questions of more local folks. It says Sonoma County, but we have folks from north and south as well.

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Sonoma County Lyme Support
[email protected]
 

When you go to another Dr(s), they can view the test(s), and make a better decision to your daughters condition.

Stress the point that your daughter has lyme and don't take no for an answerer. If they poo-poo the lyme fight back by yelling and screaming, until they recognize it.

I Even have to educate my lyme Dr on a few things.

Drs are so busy that its hard for them to keep up with all new procedures and treatments.

Hope she your daughter is felling OK

Alex
 

It's a good idea to get copies of the doctors notes as you go, or at regular intervals.

Riversinger's a peach, huh. (Alex, I'm sure you are too, since you give such great advice ['cause it coincides with my own]).

You know what? You're doing great, asking all the right questions, getting the right kind of help. Hang in there. It may be a tough ride for a while but you'll get there.

I want you to notice something. Did you see how I opened and closed all the parentheses properly? I'd never have managed that 6 months ago. YAY for treatment.
 

Someone lost mine for 4 wks; I had to followup & then had to wait 2 more days after they faxed same day to my dr!

Yes, ask your dr. EACH visit for a copy of his dictation typed notes; you need them.
Betty G., Iowa
 

I called IGeneX yesterday right after reading riversinger's response to me and they said all tests aside from the WA1 were completed and results were sent to our LLMD on Nov. 2nd.

I immediately called our LLMDs office and left a message on the machine (a machine ~always~ answers...never a live person). I explained that IGeneX had told me results had been sent to them and to please call me for correct procedures on having them fax the results to me.

It's now almost 5pm a day later and I still have not heard back from them. I'm trying not to be too overly aggressive because I know that only causes problems in the long run. I just don't know how long to wait before calling them again.

Frustrating, to say the least.

Yes, I will ask for the doctor's records after every visit. I know I'm entitled to those and I know they're very important to have. My daughter's binder is getting quite thick already - gonna have to buy a bigger one soon!

minoucat - way to go on the parenthesis. A big YEHAWWW to you! I can only imagine how frightening the fog brain and confusion has been for you.

Thanks again everyone!

Toni

[This message has been edited by heartsickmommy (edited 04 November 2004).]
 

I know it's hard to wait. Remember that Dr. G's office is only open part time, so it can take longer than usual to get a return. My doctor's office often takes 48-72 hours to get back to me on things like lab tests.

Usually they are quicker on more critical questions, but not always. Lyme is a very time consuming illness for the doctors and their offices, so I try to give them some slack, as long as things get done eventually.

I've heard Dr. G spends a long time with her patients, so things tend to get backed up. I never mind that in a doctor, as long as I get the same thorough treatment. For that, I'm willing to wait.

Also, remember what I said about some doctors not liking to let the patient have the tests before the appointment with the doctor. sometimes the doctor likes to be able to explain them, rather than have the patient worry when they don't understand the results.

So, hard as it is, try to have patience. Knowing sooner won't really make a difference in your daughter's treatment, as you will still have to see the doc for any adjustments.

How's your little girl doing? Is she feeling OK?

Hey minoucat! Looks like you're ready for big time writing! If you can pull off proper parens on Lymenet, you can do almost anything.

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Sonoma County Lyme Support
[email protected]
 

Thanks for asking how my daughter is doing. She seems to be okay for the most part. This is the strangest disease I have ever witnessed. It's like sitting and watching the ocean waves move in and out, in and out. I liken her to those waves. They come in and crash hard, some bigger than others, and then they ebb back and the ocean is calm once again. Does that make sense?

She's had petechiae on her face, neck, and upper chest for the past week now. Some of the spots are actually raised, some just flat that look like tiny bright red blood blisters.

Last night she was admiring herself in the mirror and turned her head sideways. I caught a glance of some sort of lump on the side of her neck. I touched it gently and noticed that it was a large ball that rolled around under her skin. Swollen lymph node, I'm assuming.

Yesterday, she had some bladder control problems which were unusual. She ran to the bathroom three times in a matter of 3 hours, each time spilling urine in her underwear. That is very, very unusual for her. Today she seems to be fine. ?????

Mostly, though, she's been tired. Not the same girl I used to know. Also, lots of anxiety and newly formed separation anxiety. Odd and unusual.

here she is ready for jammies... must go tend to her.

thanks so much for asking, riversinger!

Toni
(feel like crying all the time...ALL the time)
 

Does Dr. G have e-mail? You could try e-mailing, with a brief description of the symptoms, and state that the rx will run out before your appt. Mention that the tests should be back, and ask whether she wants your daughter to continue with the meds she is on, or whether they might need to be changed.

You could also try calling the pharmacy for a refill. The pharmacy will automatically send a request to the doctor's office for approval. That may be the most effective means of keeping her under continuous treatment.

You might want to take a photo of the petechiae, if you think it will show up. Symptoms have a way of disappearing when you are seeing the doctor, and rashes are good to document with tick borne illnesses.

Sounds like her nervous system is getting cranky, with the bladder control issues, and the fatigue and anxiety. Warm epsom salt baths can help by introducing some magnesium. You might try taking one too. You have to take care of yourself as well, because your daughter will be looking to you to see how to respond to all of this.

Your husband is probably as scared as you, but guys aren't always so good at knowing how to deal with it. Distancing himself may be all he knows to do. If you let him have a little room, he may come around.

I'm sorry you are having to go through this, but remember, you are catching it early. Just take it day to day, and hopefully before long you'll have back the little girl you know.

------------------
Sonoma County Lyme Support
[email protected]
 

Here again, caught in the middle re: refilling of Rx. I've worked so hard to build a relationship btwn the HMO pediatrician, LLMD, and ourselves. It's worked in our favor so far - RX is via pediatrician per LLMD's advice, so HMO pays for it. Calling in for a refill will only be a contact btwn myself and HMO pediatrician.

Reading your post to me this morning gave me a good chuckle. Yes, I should take an Epsom salt bath, too. he he... I really must 'sound' like I'm falling off my rocker. Actually, that's really not too far from the truth! I guess it's pretty obvious, eh?

And the latest news is...her EM rash is back again for the 3rd time. It just showed up this morning in all of its splendor and glory.

And as far as photos go - I should be employed by National Geographic, I tell you. I've got pictures of her 1st EM rash, 2nd EM rash, and now the beginnings of her 3rd EM rash. I'll definitely take some pics of the petechiae, but I don't think it will show up. They're so tiny. I'll sure give it one heck of a try though!

I looked into plane fares to CT this morning. I'll decide on whether to book or not after next appt. Reserving judgement for now, but feeling slightly uncomfortable with current situation for several reasons.

riversinger, how are YOU feeling? Are you currently taking meds?

Toni