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Author Topic: as some know my daughter had follow up with rheumy today  (Read 566 times)

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Offline sixpack

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as some know my daughter had follow up with rheumy today
« on: February 28, 2013, 03:52:01 PM »
hello peeps.

well as you may know my daughter had some muscle/joint issues back in November.  Short story:   we saw the ped.  the ped ran bloodwork.  three or four things came back elevated which indicated inflammatory issues. so she sent us to rheumy.  saw rheumy third week of Jan.  we were to have repeat bloodwork plus a bunch more and come back this week.

so we go today.... doc has a looksee and asks me what my gut was on whether she had anything going on.  I said, "no not really. my mom had RA and this just isn't it.  If anything maybe lyme disease."  Doc goes through all bloodwork.  All numbers that were elevated in november were all back to normal or negative.  then she gets to the  Lyme.   Yep it is positive.   so she is being treated for lyme.  she is on anti-b's for a month.  then we'll retest. 

mystery solved.
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Offline ceh1354

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Re: as some know my daughter had follow up with rheumy today
« Reply #1 on: February 28, 2013, 04:20:11 PM »
Glad it is something easily treatable and will be gone soon, hopefully. I don't know much about Lyme, so I hope she is not too sick or miserable in the mean time.  :happy0151:
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Offline wegngis

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Re: as some know my daughter had follow up with rheumy today
« Reply #2 on: February 28, 2013, 05:03:03 PM »
Are you familiar with chronic Lyme, and the controversy surrounding it?
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Offline sixpack

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Re: as some know my daughter had follow up with rheumy today
« Reply #3 on: February 28, 2013, 05:09:15 PM »
 I know there is a HUGE group of peeps almost like conspiracy sort of thing about lyme disease.  It is quite out there if you ask me.

there are those who never got dx'd and are considered end stage or stage 3...  a friend of mine is in that group.   

that doesn't have anything to do with my daughter so, yeah I don't give it much thought...  my daughter will take her meds for a month and then we'll retest.   then life will go on.   
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline SighNoMore

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Re: as some know my daughter had follow up with rheumy today
« Reply #4 on: February 28, 2013, 05:28:56 PM »
Glad to hear the mystery is solved! Praying the meds kick in and she is back to her usual very soon!
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Offline wegngis

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Re: as some know my daughter had follow up with rheumy today
« Reply #5 on: February 28, 2013, 05:34:20 PM »
I know there is a HUGE group of peeps almost like conspiracy sort of thing about lyme disease.  It is quite out there if you ask me.

What I was referring to was the quality of labs that do the testing.  Some labs are not designed to really test properly, and therein lies the root of the controversy.
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MOST anxiety happens at the subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state.  - AnxietyZone member Sixpack

Offline Slangevar

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Re: as some know my daughter had follow up with rheumy today
« Reply #6 on: February 28, 2013, 06:01:41 PM »
 :happy0180:  I know lyme disease is normally nothing to cheer about, but it's way better than many of the alternatives. Here's to quick treatment and good health soon!
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Offline sixpack

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Re: as some know my daughter had follow up with rheumy today
« Reply #7 on: February 28, 2013, 06:12:33 PM »
I don't know about controversay about labs and all of that.  I did just look it up.  I also know the "lyme community", imo, could also be suffering from a kind of "HA on lyme"  and looking for controversy.

 I know my daughter tested positive on the ELISA one then the western blot was done.  she came up + on two bands.  the rheumy told me that the usual standard is coming up on 4 bands BUT she would not want to delay treatment because of that.  She told me that when my daughter was having symptoms more bands may well have been there.  She says dx'ing lyme is always a rather vague endeavor. 

BUT we know she had something going on because of the previous blood tests on other  things were positive---ANA and ESR and her platelets were up.  The doc says in all of her years of practice when these things are elevated, there is some kind of inflammatory issue going on.  She told me, also, that symptoms of lyme come and go. which presumably would mean that the bloodwork---esr and ana and the platelets would also change from normal to elevated.

At any rate we do live in an area where lyme occurs AND we spend a fair amount of time hiking in woods....
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline sixpack

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Re: as some know my daughter had follow up with rheumy today
« Reply #8 on: February 28, 2013, 06:13:31 PM »
:happy0180:  I know lyme disease is normally nothing to cheer about, but it's way better than many of the alternatives. Here's to quick treatment and good health soon!

definitely better than some auto-immune disease for sure slang.  LOL  I mean I watched my mom deal with RA for years... dreadful diease.

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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline sassparella

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Re: as some know my daughter had follow up with rheumy today
« Reply #9 on: February 28, 2013, 11:34:55 PM »
Yeah my Granddad had RA it was awful, glad you got a treatable diagnosis and hope she's back to perfect health soon :) You've certainly had a lot going on recently.
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Offline Allochka

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Re: as some know my daughter had follow up with rheumy today
« Reply #10 on: March 01, 2013, 04:15:12 AM »
Lyme is VERY widely spread in the country where I live, because we have many infected ticks here. We don't even consider it as something serious  to worry anymore. I know several people infected with it (some for 10 years at least), my mom also has it. They all have no issues at all.
The key is to have an antiobitics course to kill/weaken the bacteria. Lyme can become nasty over years only if undiagnosed and untreated. But antibiotics do the trick!

Take the meds, and your daughter will be absolutely all right! :yes:
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Offline sixpack

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Re: as some know my daughter had follow up with rheumy today
« Reply #11 on: March 01, 2013, 07:06:51 AM »
Lyme is VERY widely spread in the country where I live, because we have many infected ticks here. We don't even consider it as something serious  to worry anymore. I know several people infected with it (some for 10 years at least), my mom also has it. They all have no issues at all.
The key is to have an antiobitics course to kill/weaken the bacteria. Lyme can become nasty over years only if undiagnosed and untreated. But antibiotics do the trick!

Take the meds, and your daughter will be absolutely all right! :yes:

yep, that's why Lyme was the best of all possible outcomes.    :yes:   so dad and I aren't worried.  she is in good hands with this doc.   

the bigger deal is my girl swallowing the pill.  LOL  last night we had to sprinkle the little granuales over the applesauce.  this morning she was able to swallow it whole.  I am going to have to take to the school nurse today about the pill swallowing issue.

++++++

thanks for the well wishes.   She is doing fine now.  as mentioned, lyme tends to wax and wane with symptoms.  she had that BAD joint/muscle issue stuff in late November and has been fine other than that.   er about a week ago she had tingling behind her knees...... that is it.


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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline beth0277

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Re: as some know my daughter had follow up with rheumy today
« Reply #12 on: March 01, 2013, 08:24:20 AM »
I don't know much about Lyme disease other than I have read that people go a long time without a diagnosis and it can be something that doctors don't test for. Although no one wants to be diagnosed with anything, this is certainly better than the alternative. I hope the course of antibiotics clears things up quickly.
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Offline greend

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Re: as some know my daughter had follow up with rheumy today
« Reply #13 on: March 01, 2013, 09:00:42 AM »
Sixpack, I'm glad your daughter has something treatable.  Yeah! Hope she feels like her old self soon. :happy0151:
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Offline ejmommy

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Re: as some know my daughter had follow up with rheumy today
« Reply #14 on: March 01, 2013, 09:13:50 AM »
Six- Glad they found something treatable. Hopefully she is feeling better soon. Nothing worse than when your kids are sick, you feel so helpless!

On another note, I hope you don't mind my asking but how would you say you differentiated your daughters symptoms from anxiety? I ask because it seems these lyme symptoms can be similar to anxiety and wax and wane in a similar way too.

I'm currently moving on from my MS fear to chronic Lyme fear  ::) I have been tested and my ELISA and Western Blot came back completely negative (not one band reacted) but to be on the Lyme boards they say if those tests are negative it means nothing and you need to go to this special lab and a special doctor. But to be honest it seems like everyone who goes that route gets diagnosed. I never see anyone say they did that and were told no they didn't have it. .

So I'm a bit skeptical of that. On the other hand, I fear I have this chronic Lyme and it is causing more issues the longer I let it go! I thought I would ask you since you have first hand experience now with your daughter, and also your friend who you said is stage 3. Did she test positive on the regular test?

Ugh. I swear if it's not one thing it's another with me. I hope I'm being irrational. Going to a Lyme specialist for me would be a 4 hour drive each way and paying out of pocket for tests and treatment. Don't want to waste money I don't have, but don't want to get sicker  :(
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