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» LymeNet Flash » Questions and Discussion » Medical Questions » freaking out over here... got son's test results..

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Author Topic: freaking out over here... got son's test results..
LaurenTurner
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I need some help.

I got my 3 year old tested back in September.

The doctor told me it was negative so I left it at that.

Lately it has been eating up at me... since I never saw a copy of the results.

I finally got the results today and am so scared...


His IGM results were completely negative except for 39 and 41 being IND.

Now for the part that has me REALLY upset his IGG is positive on 18 and 41.


I don't know what to do...

Both results are showing Negative, but then there are those positive bands.

I just can't stand for my baby to go through this.

I don't know what I should do next. He shows no symptoms, but then again he's 3 so it's hard to tell.

Help!

Posts: 248 | From Tejas | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
SForsgren
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I would get him in with Dr. J for eval. 39 is Borrelia specific.

--------------------
Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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OH geeze! I'm so sorry to hear this!!!

When's your LLMD appointment?

I think some drs say to wait if no symptoms....but....

Hopefully, you'll have moms stopping by with advice!

Hugs to you! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94834 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
LaurenTurner
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I don't have an llmd appt. set right now. I'm in between doctors. My local dr. just gave me some meds but said at my next appointment he was going to take me off of antibiotics, so I was trying to find a doctor for me.

I'm thinking of just going back to Dr. F. He treats kids. I just can't sit and wait with this.

My husband doesn't understand because he hasn't gone through this. I don't want my son's life to be ruined by this awful disease.

Even though he has no symptoms it's really hard to know what he feels like since he's only 3. I really can't handle my son going through this.. It's tearing me up inside.

And worse thing is my husband just doesn't understand. When I showed him the results he looked on the internet for a long time. He said he wasn't worried because the IGM didn't have any positive bands. (excpet for the 39 and 41 being IND).

This is so heartbreaking for me. It's one thing for me to go through this crap but not my son!!! [Frown] [Frown]

Posts: 248 | From Tejas | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
LaurenTurner
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Can someone pm me Dr. J's information? That super far from where I live but I don't care... I need to know my baby is in good hands.
Posts: 248 | From Tejas | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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[group hug] [kiss]


sending you a private message of texas pediatric dr! pms are in my profile...


also good one in louisiana who treats kids/adults!


we posted same time; sent you texas, lousiana, and dr. j's conn. info!
**************************

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LaurenTurner
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I feel like I'm in a nightmare... I just want to wake up!!!

I just talked to my Mom on the phone and I was crying... she thinks I'm overracting. Nobody understands... nobody but ya'll.

Posts: 248 | From Tejas | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
LaurenTurner
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Does someone know the best route to go to find cheap airline tickets. I want to take my son to Dr. J but it is a whopping 30 hours away from me. [Eek!] Gosh, I don't think my dh will be onboard for that. He thinks our son is fine. I wish I would of looked at the results back in September. I am the worst mom EVER.
Posts: 248 | From Tejas | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
elle
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quote:
Originally posted by LaurenTurner:
I am the worst mom EVER.

This isn't true.

Your son is 3 and abx are very effective for children. Get him and yourself to a LLMD. My pcp worked w/ Dr J by phone when we found out that our family (all 6 of us) had lyme & many co infections, mycoplasm.

I am certainly not trying make light of this but you need to be settled and in this for the long haul - for both you and your son and to help your husband understand.

Make a llmd appointment. While waiting, research and gather information on how you are going to feed him healthy, keep his bacteria levels balanced and what supplements/dosages might be good for his age/size.

I know this is a shock - have been there. But once you get past the shock, there is plenty to do when you have family with lyme and you are the caretaker.

Wish you well

--------------------
When I feel blue . . . . . . its time to take another breath

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Tincup
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OH NO... you CAN'T be!

I thought I was!

And I REALLY thought a lot of these other mothers here claimed that title to be theirs! This is getting SO confusing!!!

Oh my!

Actually... I think you will have to fight to keep that self-proclaimed title young lady. There is a lot of competition out there.

My bet is ALL mothers had that thought at some point during Lyme.

So if anything... I think that means you are reacting normally.

[Big Grin]

Now listen up... and I am talking to YOU and I am being my monster self here... just for your pleasure.

[lol]

1. Mommy is NOT bad. Ticks are bad and ID ducks are BAD!

2. Those results ARE something to consider... BUT.... the fact your child isn't having crazy symptoms is a good thing. Some children can fight this and are not treated.

3. Before you fly away on that big broom stick to CT... let's put this in a different light. There may be other options.

May I suggest....

Call Dr. Jones office and ask if you can speak to someone that might help guide you and explain the test results. (You can tell them Tincup said to call). They may want you to fax them the results and your little ones tests and medical charts so be prepared. I don't know if they charge for this consult.. but expect to pay, as they should be charging.

Better yet.. if you have a doctor there who isn't a total toad and can ask them to review the test and call Dr. Jones office... that would help. If you can do it... you can train the local doctor and get the advantage (consults) of the best help there is.

4. About hubby... he isn't going to understand. Not now anyhow. So rather than beat a dead horse... move on. You are not dependent on him to handle this Lyme stuff... as you are smart enough and "cool" enough to do it yourself. Plus... you don't need the arguments now.

5. Go back and read item # 1. that I posted above.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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elle and I were posting about the same time... so listen to her!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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KS
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Lauren,

Just another perspective to hopefully help you realize he's not necessarily doomed to experience what we have all been through....

I have spoken to a couple of people who have experience running lyme western blots and one thing they have said is that the IgM blots are more faulty in that it is easier to report a false positive band with IgMs (yes, false negative too) than it is for IgG. That being said, the fact that he has "IND" results does not necessarily mean these are positive.

Regarding the IgG, yeah, band 18 is positive and pretty specific to lyme. Just keep in mind that some people are exposed to lyme and their immune system is able to eradicate the bacteria on its own, without any antibiotics. Also, do you think this is congenital lyme and maybe you just passed on your antibodies to him, not actually Bb itself? In my opinion, an IgG response is more encouraging than if he had positive IgM responses (although no response would have been best of course).

Is he showing any symptoms? If you don't think so, even more reason to relax.

I DEFINITELY think it is worth exploring with a LLMD. Maybe try a phone consult with Dr. Jones first and see what he would advise you to do. You could even have your LLMD consult with him.

You are a wonderful mom who was proactive enough to get her child tested. Most of the kids that have the really complicated cases of lyme are the ones that are symptomatic for a long time before getting a diagnosis and treatment....I think your son is going to be fine!! Keep us updated!

Kristin

Posts: 561 | From mass | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
LaurenTurner
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Ok ya'll are making me feel so much better. Thank you so much for that. I still have a sickening feeling in my stomach, but I guess that will get better...

I just can't stand to think of this nasty stuff in my son's body. My son is about to go down for his nap. I plan to call Dr. J. during his nap. I'll let ya'll now what happens. Thanks again!!! And keep the comments coming. [Razz]

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ICEiam
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If your little one doesn't have specific symptoms and you get him to Dr J, I would relax and just do what you need to do. We took my little granddaughter to him when she was 3.

She had gastric symptoms and fevers. Those were her main symptoms. She is 6 now, back on antibiotics as her same symptoms came back but she will be fine. She is in the top half of her class and very bright.

No behavior problems and healthy. She just has those 2 main symptoms and they seemed to flare every 4 to 6 weeks before treatment at 3. Then when she relapsed at 5. These things I can deal with. We will just watch her closer this time. Silly us, thought since starting school she was getting the flu..............DUH

Good luck and try not to stress, it isn't good for you either.

HUGS

--------------------
ICEY

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luluMN
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Hey there,

My daughter tested postive and she has not had symptoms. I see Dr. C In Mo and he said,
do not treat it if there are no symptoms because the body can fight it on it's own.

So as of now we are not, but I really understand the stress your are going through, you are not alone...That cloud of just knowing the bacteria is in thier litte bodies is stressful, but just remember their own healthy immune system is taking care of business on it's own...which is great news!
My thoughts are with you!
Laura

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Geneal
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You are not the worst Mom in the world.

I can easily compete with my children complaining of pain and other Lyme symptoms. [Eek!]

Me? I was too sick to think beyond what I was feeling. [shake]

I thought they were just copying me and my complaints.

Take a deep breath.

My LLMD does not treat based on Western Blot.

It only supports a diagnosis based on symptoms.

Maybe something you want to maybe do a "challenge" for.

See if he herxes.

I had to really search for symptoms on my congenital Lyme baby.

He had them, but they weren't the obvious ones like my daughter has.

Now.....dry those eyes.

Although my Mom tells me that the more you cry the less you have to pee. [Big Grin]

Call any doctor of your choice and ask.

Ask for a list of symptoms that would be appropriate for a 3 year old.

Whatever it is, you can do this. [Smile]

[group hug]

Hugs,

Geneal

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Tracy9
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Like others said, try not to jump the gun here, give yourself a break. EVen DR. J doesn't always treat if there are no symptoms, he may recommend a wait and see approach.

The best news is that there are no symptoms. People get the lyme bacteria and never get sick. It happens.

It just didn't happen to us!!! [Frown]

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
   

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