as some know my daughter had follow up with rheumy today

[sixpack]

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.

[ceh1354]

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. 

[wegngis]

Are you familiar with chronic Lyme, and the controversy surrounding it?

[sixpack]

 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.   

[SighNoMore]

Glad to hear the mystery is solved! Praying the meds kick in and she is back to her usual very soon!

[wegngis]

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.

[Slangevar]

   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!

[sixpack]

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....

[sixpack]

  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.

[sassparella]

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.

[Allochka]

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!

[sixpack]

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!

yep, that's why Lyme was the best of all possible outcomes.       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.

[beth0277]

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.

[greend]

Sixpack, I'm glad your daughter has something treatable.  Yeah! Hope she feels like her old self soon.

[ejmommy]

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 

[sixpack]

ejmommy

I don't mind you asking at all....

FIRST I will say----and some won't like what I'll say    BUT.......   I find that not everyone who has anxiety or health anxiety can readily admit it and join an anxiety forum.  Further I will say that some of these same peeps become so convinced they have a seizure disorder or heart ailment or lyme that they will join forums that pertain to that issue.  Then they'll find ANY thing out there that will bolster their point of view.  AND I will say everybody loves a good conspiracy       What I find interesting about the "lyme people" is that it is very convienent that only certain labs or doctors can readily or accuarately dx lyme's disease.  I wonder what kind of financial stake the labs that are soooo good with lyme with the special test have.  AND, like you said, everybody on those forums seems to "go that route" end up with lyme....  so, yeah mighty skeptical my ownself.   I did speak to my daughter's rheumy about "other" lyme tests and another lab out in california (one I heard of specifically) being more accurate or what have you.  She looked at me perplexed saying, " I don't know about any other tests.  all of the rheumy's I know and rheumy's as a whole use these two tests.  I also go by other blood tests that show inflammation."  She did tell me that dx'ing lyme's is always a vague endeavor.   Today I was having some bloodwork done to recheck my cholesterol.  the blood drawer guy that drew my blood had drawn my daughter's back in November (not the ones on monday that tested the lymes).  He told me that he drew blood on another child the other day that tested +.  He also stated that the rhuemy in the same medical complex that the lab he worked in sends people over all the time that test positive for lymes.   I told him about my daughter's bloodwork in November and the things that came back elevated.  He piped in, "yeah that is very suggestive of lymes"....

 So I'll say------ it is always a dicey proposition looking on other disease forums.  YOu could well find yourself in a den of lions.      

Anyway---done with my anti lyme conspiratory theories...   

Now how did I differentiate between anxiety and lyme with my daughter?  Well anxiety NEVER was a consideration.  she doesn't have an anxiety disorder.  My daughter sometimes seeks attention so I had to look at that.  But my first thought back in November when she started complaining about her muscles and joints was "growing pains".  I watched her for a week.  It was obvious this wasn't it.  I mean she was hardly walking. A couple of nights she told me that she would wake and be unable to move her leg.  She was running low grade temp that week too.  Then for a day it got better.  She even played WII.  the next morning she came to my bedroom with her arms out bawling saying her wrists hurt.  I had her take a bath hoping the warmth would help.  She called me into the bathroom saying she couldn't get out of the tub as it hurt too much.  I ended up taking her to the pediatrician.

here is  the link when I talked about her aches/pains and doc

http://www.anxietyzone.com/index.php/topic,63485.msg366702.html#msg366702

Anyway:  on the 1/23 we went to the rheumy for the first time.  she said that overall she was pretty "boring" but the tests that were a bit abnormal had her a bit concerned.  that anytime she's seen that something was going on.  So orders were  1. go to opthamologist because RA in kids will show in eyes.  2. if she has another "Pain" day to call and bring her in right away.  3. ordered repeat of november labs PLUS a bunch more. 4. do the labs a few days before her followup appt unless she has a "pain" day, then do labs that day.


Sooooo blathering, blathering...... 

ejmommy...  imo, it is unlikely you have "chronic lyme".  I know about all those other forums, but again I am dubious with all that.   others can fuss if they want.  but that is what I think. 

I do have a friend that was dx'd with Stage 3 lyme disease.   she was just dx'd this year---IDK maybe by that special lab.  BUT she was bitten by a tick in 2001.  she has had SEVERE pain to the point that she can't work.  a few years back she was dx'd with MS then "undx'd"  then she had fibro.....  she was on pain meds to the point that she needed rehab..............   so that is her lyme story......


if you have any other questions with my immense knowledge on the subject  , let me know......................   the only thing now is that since I spend tons more time in the woods than my kids, maybe I should be tested.

[LindaRK]

Glad you got a definitive diagnosis and she's being treated.  I would like to offer one suggestion though .... get her on a probiotic (few hours before or after her meds).

My hubby has been tested positive for Lyme's probably 5-6 over the last 25 years.  We, too, live in a tick-infested area (deer love our yard).  Generally, when a family member gets an imbedded tick, we take it out, put it in the freezer, make an appointment at the lab down the hill and get the tick tested for Lyme's and whether it's a female or not.  Then, it's antibiotic time.  Every single time hubby has been on the meds (most of the time doxycycline), there was lots of diarrhea UNTIL he started on probiotics.  It was no problem after that.  Not sure if she's experiencing this, but if so - try the probiotics.  Heaven forbid the doc would tell us that.

[sixpack]

I got the yogurt with probiotics in it.  hate for the poor thing to have to choke down more pills.  LOL.

she is on 500mg X3 of amoxicillin.   if that doesn't do the job, doc will try something else I suppose.  she gets retested in a month.

[trainwreck]

Sounds like she is in good hands! 

[LindaRK]

Sixpack - there are chewable acidiophilus tablets - strawberry and blueberry.  They taste good.  You can get them at the health food store for about $5.

[sixpack]

Sixpack - there are chewable acidiophilus tablets - strawberry and blueberry.  They taste good.  You can get them at the health food store for about $5.

hmmmm...



on a positive note..... she is able to swallow the pills now.  YIPPPPPEEEEEE

[dancer67]

I am so glad you found out what was going on and it was caught. Lyme is very prevelant where I live as well. A friend of mine who lives in FL has in-laws that own a home on Nantucket. After vacationing there, they went back to FL. Their son became very ill. They went to every single Dr and many said it was all in his head. Not one Dr. thought Lyme because the lived in FL. It asn't until the came back to the Boston area, and saw a Dr who tested for it. Yep, positive. But he had been suffering for almost a year. He has long term damage from it now. I guess the in-laws didn't even think about Nantucket and a possibility of Lyme. Living in FL that is not something Dr's think about testing for. So glad it wasn't something worse. It is awful when it is one of your own kids. Keep us posted.

[missworry]

Hey six pack ! Good luck with treatment for your little one.
How long has she had symptoms for ? Was it just November she started to complain

I'm still in treatment for Lyme but I'm improving


My son is healthy but I worry about the possibility of congenital Lyme daily ! It takes over my life

[sixpack]

Hey six pack ! Good luck with treatment for your little one.
How long has she had symptoms for ? Was it just November she started to complain

I'm still in treatment for Lyme but I'm improving


My son is healthy but I worry about the possibility of congenital Lyme daily ! It takes over my life

her rheumy believes she was bitten by a tick in the summer some time.  She had the aching joints and muscles in Novemeber.  her ped ran bloods and inflammation factors were up so off to the rheumy..  saw rheumy in January.  then repeated all bloods plus others===like lyme.  rheumy said that numbers like that, in her experience, mean something.    She only had the badly achy joints and stuff for a week or so in late november.   then in mid Feb she had some tingling behind the knees.  The repeat bloods last monday showed all of her inflammation factors were back to normal which I guess would be expected since her body was feeling fine.  The lyme tested positive.  We didn't test for that in November.  As the rheumy said, lyme will wax and wane.   so this is a pretty typical presentation.

As you can read this, now long thread, here and above with all of the explanation...     but she is on amoxicillin  500mg X3. for a month.  She is 9.  In a month the lyme test will be repeated.   If they are negativ we'll know the meds worked, then she is done with the meds.  If not, then anti-bs will be continued.     I am sure she will be fine. Truly I am not worried.  She is carrying on about her life and isn't affected by it all that much physically (oh she said a bit of her spine was hurting her tonight)  and NOT AT ALL emotionally. 

Lyme is somewhat common around here.  as mentioned in another post on this thread, the phelbotemist said he did a lyme test on another little girl last week that came back +.  he said the rheumy office in the same medical complex sends patients over all of the time that test +.    Shoooooot I spend a ton of time in the woods, I wouldn't be all that surprised if I tested positive.  If I get around to it, I may ask my doc to run the test.   

Thanks for the well wishes.  As long as she swallows her pills, things will be just fine...   I mean lyme is the least of what it could have been.  feeling pretty lucky.