Child with lyme disease?

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Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/4/2009 7:19 AM (GMT -7)   
So, I've been on the hunt to find out what it is wrong with me! However, it isn't just me that has undiagnosed health problems. My 3 1/2 year old son does too. about a year ago, he started having myoclonic seizures and sensory issues. He is developmentally delayed and is seeing a developmental pediatrician and a neurologist for his epilepsy. I can't get answers from anyone why he has this. They call it idiopathic. I hate that word. He is too affectionate and social to be autistic and the specialists agree. For some time, I've wondered if discovering what is wrong with me will be the key to understanding what is wrong with him. I do remember him getting a tick on him a few years ago. It was a small tick. He got it while we were on my husband's parent's farm in Missouri. I remember being worried that we hadn't gotten the head because it was real red around it for awhile, but it went away. I have also been bit by ticks at this farm. I don't remember having a reaction to them, but it has been some time ago. Other than the seizures, sensory issues, development delays.. my son seems pretty normal for a 3 year old. He has angry outbursts and doesn't seem to understand as much as he expresses. He doesn't seem extraordinarily fatigued. Although he does sleep very well at night and if I can get him to lay down during the day, he will sleep for several hours. However, he likes to go go go like all other 3 year olds. He complains that his stomach hurts sometimes.

As for me, I battle mostly with fatigue. It's overwhelming at times. Last night, I went to bed at 6:30 pm and when I woke with my children at 7 am. I still felt groggy and unrested and found myself falling asleep on the couch. I have joint pain mostly in my knees, neck, wrists. I see alot of black spots in front of my eyes. It's like they are floating around all the time and when I try to focus on them, they swim away. Weird. I have ok weeks and really bad weeks. I have considered Lupus. I have tested positive for ANA so far. I am mostly concerned about the cognitive side of my issues though. I have a terrible short term memory now. I can never remember anything right after I do it. I can give my son his medicine and than not remember if I did. The other day, I poured him some cereal and don't even remember giving it to him but I had. All I remember was pouring the cereal and then I was looking around for it in the kitchen. I have no recollection of walking into the other room and giving it to him. It was surreal. I drop things a lot too. I've broken 4 glasses in the last month. It always seems like I have a good grip on the glass and then it's on the ground or in the sink or on the counters. I go to put things on the table or counter and I miss them. I also forget where I put things. If I were older than 29, I wouldn't worry so much about some of these things. A few weeks ago, I had my worst week ever. I had a tension headache for 5 days straight. It was terrible. I woke up feeling hungover every day and I felt like I was walking sideways and on air, kind of floating around and not really here. My head felt full in the back, like I had a lot of pressure in it. I ended up in the ER and had a cat scan and it was normal. It was so scary. My doc gave me muscle relaxers because she said that the muscles in my neck were very very tense. I was dizzy most of that week. I cannot tolerate alcohol anymore either and I have terrible hangovers. I also start feeling sick to my stomach and my head will pound when my husband plays his music in the car even a little loud. That used to not bother me at all. I have to wear sunglasses at all times when I'm outside because even when the sun is behind the clouds, I still get pounding headaches. I feel sick after I get out of the shower or a hot bath. I try to take cooler showers or cooler baths but I can't tolerate the cold. I have to take really hot ones, because I always feel so cold.

The thing is I know no one here can diagnosis me. I'm not asking for that. I'm just hoping that some that someone will be able to give me a clue or point me in the right direction. I know that something is wrong. I don't know if it is lyme disease, lupus, or whatever. I just know that it is something real. I am taking anti-depressants because my PCP swears I'm depressed. They are not helping with my physical symptoms, but they do make me happier for a little while.

Does anyone have children who have lyme disease? Did you give it to them in the womb? What were there symptoms? I have this feeling that my son and I are suffering from the same thing. I really believe that if the drs can diagnosis me, then it will help us diagnosis him. His seizures are bad, he was having 30+ of them before he got on meds and he is still having abnormal EEGs now that he is on meds. We are really worried about him. And, we are also concerned for our 1 year old as well. Especially, if this is something I have given them.

Thanks for reading!

(((Debbie Downer)))) *I'm thinking of changing my name to this because that is what my husband calls me*

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 6/4/2009 8:24 AM (GMT -7)   
Hi Debbie Downer! I have to fight NOT to be a debbie downer many days, so I totally understand your name. :) Your symptoms sound very much like lyme. I too had the overwhelming fatigue (I basically had to drop out of grad school because I couldn't stay awake to do my work) and terrible neck tension and headaches. When the memory and cognitive problems started, I really knew something was wrong. The good news is, if it is lyme, it can all get better with treatment. The thing is that you and your son need to be properly diagnosed and get proper treatment. (Sorry, I don't know a lot about lyme in kids; I'm sure many others here can give you a lot of advice about your son.) Have you read the sticky thread at the top of the lyme forum page called "The Basics"? It has lots of great advice that people here have accumulated over the years. I recommend starting there, and then trying to find a doctor who knows a lot about lyme.
Good luck! I'm sure others will post in response as well.
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/4/2009 8:48 AM (GMT -7)   
The fact that you know that you and your son were bitten is enough to be reason to suspect that it could be Lyme or even co-infections. I don't know enough about the symptoms in children, but it sounds very possible that you are both infected.

Hope you are able to find treatment soon!

Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/5/2009 9:09 AM (GMT -7)   
I am really starting to think that if the doctors can discover what is wrong with me, we can diagnosis my son as well. I just have this feeling that it is treatable and that are conditions are related. The doctors keep telling me that it is a good thing we can't discover why he has seizures. I don't get that. It is more than seizures though, he has extreme sensory issues. He reacts to tones in voices. For example if my husband and I argue (We never yell), he will start screaming and crying and hitting at us. If I'm on the phone and I start talking passionately, he will start doing the same. Sometimes he will cry if we sing and sometimes he won't. It is all very unusual. We often suspected autism, but he is so affectionate and social and plays very well with other kids. Autism has been refuted in his case. No one knows why he is the way he is. I've changed a lot in the last five years as well. When my son was a baby, are cat brought in fleas to the house we lived in. I had bites everywhere and he had a few too. It is difficult to pin point an exact time when my symptoms started because it was around the time of having my first baby. I do not which symptoms are illness and which were associated with pregnancy and hormones. I do know that my symptoms are getting worse. I drop things so often. I thought I was just clumsy, but I'm starting to worry about it. It always feel like I have a good grip on the glass I'm holding or whatever it is and then wham it is on the ground. It always startles me. I have broken almost all our glasses and plates in the past year. I have switched to plastic. Is it difficult getting a doctor to test you for lyme? I'm worried they won't take me seriously. I am starting to believe that both my son and I have it which concerns me about my 1 year old as well. I am scheduled for an MRI and I am wondering if lyme can show up on that? What do I need to do to get my son tested for lyme? Do I just ask his pediatrician or do ask his neurologist. What tests should I ask for? I really need to discover what is going on because it is ruining my marriage. My husband and I hardly get a long anymore. He doesn't understand and he doesn't believe that I am sick. :(

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/5/2009 8:28 PM (GMT -7)   
Debbie i dont like that your husband calls u that. anyway have u seen a lyme doc you both need to have western blots done and please look up the post i did of karen forschners story. I WILL BUMP IT UP FOR U OR GOOGLE IT she is the founder for the lyme disease foundation. hopefully things arent as bad as what she went through for treatment of her son but i want u to know how important it is for us to get diagnosed and treatment. get your son on antibiotics even if you have to lie about why you need them. I have a 21 month old and i had lyme before i became pregnant but did not know she doesnt really show signs but i still will test her it can be dormant. my western blot will be done mon please read the story and get treatment and testing -V
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/7/2009 11:13 AM (GMT -7)   
i hope your saw this deb
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/7/2009 1:33 PM (GMT -7)   
Debbie, I think your feeling down in your gut that yours and your son's symptoms are somehow related is significant. I don't know if you or your son have Lyme disease, but you both certainly have many symptoms of it.

Veromia is trying to steer you in a very important direction.  She has a lot of info and knows where a lot of info can be found.
 
Even tho the western blots w/ standard labs are not sensitive enough and they do not read all the significant bands, surely your Drs would at least start w/ a test like this. Just make sure you push enough to have it read w/in 24 hrs.

My PCP ordered my WB, and it was not positive by anyone's standards. However, I understood my reaction to be significant and have an appt w/ a LLMD. If we can somehow rule Lyme out, fine. Until then, I have reason enough to go this route.

If you can at least start w/ some type of testing, maybe you will gain reason enough to pursue more reliable tests.

My thoughts and prayers are with you and your baby. Mama knows, and you know she knows!


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.

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