posted
Hi, Mostly new here. I've been trying to get a diagnosis for my sick nearly 3 year old for past couple of months. Been to lots of specialists (Ped, ENT, Neurologist, Dentist, ID), and they are stumped. I posted here a couple of days ago because I now suspect it may be lyme. If so, exposure would likely have been this past summer. I have contacted Dr. J and am awaiting the packet and blood test kits. My ped sent us to a pediatric ID today who does not think lyme is likely cause -- says important symptoms are missing (like the initial rash, facial palsy, and obvioiusly arthritic swollen joints). But he will test anyway. I did not bother to tell him that I am also testing with Dr. J.
Here are her symptoms. Please comment as to whether you think this might be lyme. Or does it look like something else? I'm petrified we are not finding out what is wrong with her, and docs are not of much help. Most of these started in mid-december following a bad virus.
Started with, and continues to complain, of teeth pain (both sides) and headache. At times this has been excruciating, but has lessened lately.
Facial twitching -- due to pain? not sure if it is voluntary or involuntary. After weeks of doing this, it mostly disappeared this past week.
Recently, joint pain has appeared. She now says her legs hurt, something is wrong with her legs, etc. Mostly points to knees, but ankles also.
Says someone is tickling her. Is this tingling?
Night sweats
Takes 1-2 hours of me rubbing her back to fall asleep at night.
Stomach ache
Constipation
Says she doesn't feel well.
Major irritability
Back to back colds.
Much of the time she can be distracted out of her pain or discomfort, and still loves to play and have a good time. The worst time is night.
Sorry so long. I am very dismayed right now after my visit to ID doc. It is discouraging to not get a lot of help/answers. All the docs are most bothered by her night sweats. Please tell me how this symptom list looks to you.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey out west..
Sounds like you have a bundle of troubles with that precious little one. Sorry to hear it.
You said..
The ID duck says no Lyme because these things are missing...
"like the initial rash, facial palsy, and obvioiusly arthritic swollen joints"
1. More than 50 percent of folks don't get the rash.. or don't notice it.
2. Bells palsy would be quite noticable compared to some of the "facial plasy's". This could be a constant pain thing.. or on/off pain thing. Less than 10 percent of the people with Lyme get the Bell's palsy.
3. It is VERY rare to have swelling in the joints in many cases of Lyme. Pain.. yes.. swelling.. no.
The original symptoms did have that on the list.. however.. many more don't have swelling, than do.
After seeing the symptoms list.. it could be many things. But if you are concerned about Lyme.. I would certainly have her evaluated fully.
The night sweats remind me of babesiosis. I would have her checked for bartonella also.
Ask smarty pants IDiot duck to run those tests through his labs if insurance is "treating". If insurance is not treating.. wait for the real ones from Dr. Jones.
The leg pains she describes.. and they are often labeled "growing pains".. are quite typical of Lyme. Not that any of these symptoms can't be something else.. but I do see enough concern to want to rule out Lyme and tick borne infections.
I don't see anything hitting me hard that says this can't be Lyme.. but of course I can't diagnose her.
I think you are on the right track by checking out Lyme as a possibility.
Keep up the good effort. That is how many of us got help.
Let us know what we can do to help. We DO care.
And both of you feel better soon.
PS.. I am NOT a doctor.. and this is NOT medical advise. It is simply some opinions and suggestions.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
I double what tincup has said...I can't diagnose...but you certainly have contacted the right person to do so..dr jones diagnosed and treated, and I think cured both my kids! He's w0nderful. He'll be able to helpyou sort all this out.
I will say that when my son started all this lyme, babesia a dn bartonella nightmare he had all of the symptoms your daughter is experiencing and thensome...the worst was the night sweats and nightmares and stomachaches/fatigue.
I used to go in and check him at night and his entire head and pillowcase would be drenched in sweat! so I understand where you're comign from.
I would relax in knowing help in on the way. Wait for hte kits, have her tested by the labs, talk to dr. Jones, have her seen and followed by him..don't worry what other drs say, WHO DON'T KNOW LYME DISEASE! She will be in very good hands...
and remember she has a wonderful mommy who is watching over her..keep coming here for support...there's lots of us who have been wehre you are!
take care, adn I'll keep your little one in my prayers.
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
My daughter had most of the symptoms your child had less the night sweats but she did not have bartonella (possible cause for sweats) everything else she had. Sounds like a good possibility she has lyme. Dr. J will get to the bottom of it if it is, Good luck Pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
Sorry to hear about your little one being sick. My daughter was 3 when we were diagnosed.
How are her symptoms (mostly the leg pain) in the morning when she gets up? This is the worst time for my daughter.
Sometimes she needs Advil and lying in bed for awhile before she can get up comfortably.
My daughter is 5 years old now and has went through some of the symptoms that you described.
I agree that the nightsweats sound like a coinfection. My daughter did not have this symptom as severe as some have described, but she has to be "cool" to sleep. I cover her up....she kicks off the covers....
Hang in there. My daughter started school this year and is doing good! I've heard so many good things about Dr. J. You are on the right track.
Be careful with your pediatrician though, sometimes they can be down right mean if they think you are going to someone else if they don't think it's LD.
I lost Emily's Dr this way. Not that it was a loss, but very disturbing since she had been her Dr since birth.
Just do your own thing with Dr J and share information with your pediatrician only if necessary. Unless your Dr is open to the possibility of LD. I shouldn't lump all Drs together, but it has been my experience with more than one.
Dr J has treated MANY children with LD and is thought of highly here.
If you have any questions or anything feel free to e-mail me or post here. This is a great bunch of people with tons of experience with what you are going through.
My e-mail address is [email protected] Feel free to e-mail me anytime. Good luck and take care!
posted
Thanks everyone for your replies. I'm so glad to have found this board. It sounds like too many of you unfortunately know the heartbreak of having a sick child.
Two questions:
Through Dr J I will be having lab work done at MDL and Igenix. What are the odds that he could possibly report a false positive to us? I'm just beginning to learn about all of the intricacies of test results. I realize the horrible prospect of a misdiagnosis when it really is lyme, but what about the reverse -- misdiagnosis of lyme when it is really something else?
Second, does lyme cycle so that my daughter could seem considerably better some days or weeks?
I'm sorry you're having such a tough time finding out what's going on with your little girl.
I second the sentiments and opinions mentioned above.
Dr. J is also an excellent source re differential diagnosis. He sees the new "great imitator" every day!
Getting a false NEGATIVE is unfortunately the scenario in which many lyme patients find themselves. A positive indicates antibody production specific for lyme and would support a clinical diagnosis for your daughter.
However, I also understand your concern regarding other possibilities and encourage you to follow up other diagnostic leads simultaneously.
There are other members on this board who are well versed in the areas of rheumatology and immunology and may be able to offer some insight as well.
Please just proceed with caution, as you have been doing, so nothing interferes with your ability to get lyme treatment if needed.
Best of luck to you and your little one.
love, andie, JC & Julie
Posts: 278 | From weston,ct.usa | Registered: Aug 2004
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posted
We're trying to figure out if my 2 1/2 yr old son has lyme, too. Had blood tests at Dr. J's office yesterday & our first appt. with Dr. J is on Feb 14th.
He does have a flare-up cycle. Used to be every (approx) 11 days, now we're down to 6 days. It's joint pain with no swelling. Friday he couldn't walk for 40 min.
[This message has been edited by ElizabethP (edited 03 February 2005).]
posted
Elizabeth, I would be very surprised at finding any ped. rheum. in Boston that really knows lyme, much less several of them.
And wouldn't this be wonderful if there were really so many docs in one city who were knowledgeable about Lyme!
Think your contact with Dr. J is the best thing you could have done. Better sooner than after you had gone thru the docs on your list and found that they were not actually any good at this disease. Not to mention the time and money wasted, and child not treated.
[This message has been edited by lou (edited 27 January 2005).]
Posts: 8430 | From Not available | Registered: Oct 2000
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Mama and Elizabeth,
You've definitely taken the right step in getting Dr. J. I fooled around with Rheumoducks, Neuroducks, Cardioducks, and Mallard ducks, to no avail. A waste of time in my son's case. Took months but finally found an LLMD who sent his lab work to a lab with some knowledge of how to detect this disease. He's receiving treatment now, but wasted a lot of time.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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