tickled1
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posted
I'm worried I may have passed Lyme to my 5 yr. old. I was definitely sick before becoming pregnant w/her but I didn't know what was wrong at the time.
I'm thinking of having her tested but have been scared to death. My husband says she's perfectly normal but he doesn't see the subtle changes in her that I have b/c I'm with her 24/7. Her behavior has gotten much worse, she has excessive thirst during the night, she is more irritable and clingy and is starting to throw tantrums. She is also incredibly sensitive to noise and seems kind of ADHD.
Overall she has a lot of energy and seems quite healthy and is very smart. Is there any harm in waiting to see if further symptoms develop? What would I do w/the info from the test results anyway? If it was positive, I don't know if I should wait to treat as I've heard it's not good to stir things up if not really symptomatic. W/congential, is it possible to get a negative test and have it? How would I proceed if that were the case?
My husband is so lymed out w/Lyme being the focus of our lives day in and day out for the last several years that I think he isn't capable of going there with our daughter. I'm terrified and I don't know how to handle it. I think everyone thinks I'm paranoid and everyone else sees a perfectly healthy child when they look at her, including her pediatrician, but like I said, they don't see what I see. I don't know what to do.
My husband is very good about my illness overall but sometimes I worry that if push came to shove and I felt she should be treated and he didn't that he would have the upper hand b/c I'm on disability and he could use it against me and take her away. I'm sure this is just me being paranoid as we have a good marriage but I tend to fear the worst. I feel alone in this b/c no one sees the symptoms with her that I see.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I read somewhere that Dr. J says kids with congenital lyme rarely test positive. I don't remember where I read that though, so I can't reference it. You may want to check his website: http://sites.google.com/site/drjoneskids/home
I copied this from a section on his website:
Gestational Lyme Disease Case Studies of 102 Live Births
(doctor's names removed)
� 102 children with gestational Lyme Disease � Mothers had either untreated or partially treated LD � Children were diagnosed between the ages of 1 � 5 yrs old � Symptoms were present in infants but overlooked until they gradually progressed in frequency and severity.
RESULTS- Percentage of children with the following symptoms from gestational Lyme
Sounds like a description of my DS7. I'm IGeneX and CDC positive for lyme, and I think all 3 of my kids have it. DS7 has been really sick for years, and we discovered I had lyme as a result of trying to figure out what on earth is wrong with him. Like you, I had no idea that I had lyme previous to my pregnancies. My other 2, DS6 & DS4, sound more like your daughter - nothing obviously wrong to a casual observer, or a doctor who only sees the obvious, but they're not exactly "right" either. I'm taking all 3 to an LLMD next month.
I have the same questions - is it worth treating the other 2? Am I going to make it worse instead of better? I'm not sure what to do, but feel like I need to do something. So I don't really have any advice for you, just sympathizing because I'm in a similar situation. Good luck!
tickled1
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posted
Thanks momcap! Best of luck to you and yours as well.
Posts: 2541 | From Northeast | Registered: Jan 2008
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lpkayak
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posted
i gave it to my daughter thru placenta and then 3 yrs breast milk
she was my first girl after 3 boys but somethings were different
th most obvious was her sensitivity around her belly. she would wear overalls...no belt or tightness around waist...and that was it. she had upper endoscopy done early ?5-7??? and it was neg
i was sick and knew i had lyme but was unable to get dx at this time
she was whiney wimpy kid...yeah-1st girl with 3 boys but mom was always a tom boy. we lived on a farm. rode horses. i was PE teacher. it didn't seem right.
she was late talking---at 3 speech eval said low expressive, high rec--oh man...cant find the word. she understood what she heard well...but didint talk much
got good grades in school and loved it except hated gym cuz she always hurt somewhere or had no energy
she also had extreme temper tantrums and all i could do was scoop her up and put her in her bed to cry it out---awful memories
she had trouble with small motor-esp writing and trouble with reading comprehension -she never liked reading
but she had this desire to be perfect and studied real hard to get good grades
at 10 yrs old she began to not be able to wake up for school
school wanted to tx it as bad behavior...i knew how much she loved school so that was stupid
i took her to the "crazy" doc in town since i was desperate---regular docs found nothing-she was pos igenex --- one yrs abx tx - one yr clean up the yeast(this doc also finally dx me and is ilads now)
she is now working on doctorate in chemistr but still has residual sx that she denies (firs yr college had her tonsils out and doc said he never saw such a bad pair)-now esp has sensitive hearing...and mood stuff
8% Dyslexia---SHE HAD DYSGRAPHIA 23% Anger or Rage 13% Aggression (passive) 11% OCD(?)-actually yes-now that i think of it-she had that "have to be perfect thing" 54% Irritability and Mood Swings 13% Emotional Problems 13% Depression 7% Suicidal thoughts(?)
36% Sensory sensitivity manifested as hyperacuity 43% Photophobia 9% Motion Sickness 23% Tactile, Taste or Smell sensitivities
REMEMBER SHE IS CONSIDERED A HUGE SUCCESS BY MOST PPL---SO DON'T WORRY ABOUT YOUR CHILD BUT I WOULD TEST SO YOU KNOW...AND THEN READ OR ASK DR J's BEST PLAN
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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tickled1
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quote:
REMEMBER SHE IS CONSIDERED A HUGE SUCCESS BY MOST PPL---SO DON'T WORRY ABOUT YOUR CHILD BUT I WOULD TEST SO YOU KNOW...AND THEN READ OR ASK DR J BEST PLAN
Thank you! That is exactly the kind of statement I needed to hear to make me feel better! I've heard of plenty of people on here that are adults that say they are congenital yet have managed to have fairly normal/successful lives despite it. My daughter started speaking sentences at a year and 1/2 old and is in preschool right now and is reading. However, she was a little late sitting up and walking. She also had 6 mos. of "growing pains" and of course there's the irritability, clinginess, behavior, thirst, hyperacusis. Her behavior also seems to improve drastically whenever she does a course of abx. Oh yeah, and she can't sit still to save her life.
Given the fact that congenital cases may not show up positive on tests, I think it's too soon to jump into treatment. But, I will discuss all of it in detail with my own LLMD and take it from there.
On another note, my puppy just got a tick bite and has a bulls-eye on her belly Ugh! It just never ends! There is no getting away from ticks where we live.
posted
We've spent several years trying to figure out what was wrong with our dd who is now 8.
She contracted a serious infection around the age of 2 that required hospitalization & IV abx.
After that illness I noticed a pattern that included behavioral changes that would respond to abx treatment.
As a Mom, I highly suspected she had some mystery infection that the Docs could not find. Luckily our Doc was good about handing out the abx despite negative tests.
Two years ago she developed severe behavorial changes due to a strep infection. She was dx'd with a disease called PANDAS.
Within a few months, she was also dx'd with an Immune Deficiency Disease and Eosinophilic Esophagitis which is an autoimmune illness to foods.
We treated and managed those for the next year in half. In November of last year she took a turn for the worse.
We discovered last month that she & I both have Lyme. I was bitten many years prior to her birth and had many symptoms but didn't know it.
In February due to damage from the autoimmune disease, she had a tube placed in her tummy and she is unable to eat any foods orally. She receives formula through the tube for nutrition.
She also receives IVIG every four weeks for her immune issues and has to be constantly monitored for new strep infections.
She was pulled out of school in January because she was just to sick to attend.
Those minor behavioral changes through the years have turned into serious Lyme raging attacks which have completely changed the dynamic of our entire household.
She no longer rides her bike because of the pain in her legs. When she was at her worst-we would often have to carry her because of the pain.
There is no telling how much damage has been done to her body during the last eight years of untreated Lyme or how much of it is permanent.
We can treat the LD & coinfections but we do not know if her immune system will repair itself enough to every stop the IVIG.
We do not know if, when, or how much food she will ever be able to eat again orally due to the damage that has been done to her esophagus & messed up immune response.
I have no doubt in my mind that all of her health issues stem from the untreated LD. We can hopefully rid her body of the LD but the damage may be permanent.
If I had a chance to do it over again-I wish I would have heard of/considered Lyme six years ago.
My dd's IgeneX test was positive on bands 41 & 58 and IND on 83-93. Coupled with her sx's and my postive results thats enough to treat her.
IMO-have her your dd tested and visit with the LLMD about the subtle symptoms you have noticed.
Good luck with whatever you decide to do.
Posts: 131 | From Nebraska | Registered: Apr 2011
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posted
It's a good question, and I would like to know the response from others as well.
I'm looking at having my daughter age 5 tested as well.
I will continue to monitor this thread in hopes of more responses.
Good luck Tickled.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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jackie51
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My advice--get her to an LLMD as fast as you can. Every symptom my 12 year old has/had could be explained away. She is getting much better and hopefully will be off meds by the end of the summer.
My other child has the pandas diagnosis. Long story here, I won't go into it. When I asked her if her feet hurt, she said "no, but they are always stiff in the morning." Duh, sounds like bart to me.
Just like when we picked out preschools, you must listen to your gut. That's what mothers do. Yes, I know husband's can be difficult.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
I was diagnosed with LD back in Oct., after trying to get diagnosed since the end of July. I have Chronic Lyme and knew it was years before it came out of hiding, but was never sure just how long I had it.
We first tested my 5 year old son since we assumed I had it at least that long. He was positive. The main things with him that I have noticed is his sensitivity to clothing and twitching, like shrugging his shoulders when he has to stand still for something (if that makes sense?). Mainly sensory stuff for him. Our LLMD, who trained with Dr J for a while last summer put him on 3 months of antibiotic and hopes that is all he will need. He said that children rarely herx, not sure if that is true??? It has been probably 3-4 weeks of treating him and so far it has been ok.
Once my 5 year old tested positive we had our 8 year old tested and unfortunately he also came up positive. I also breastfed both boys fyi. He has had issues with trunk muscle strength since birth, but also had a foot deformity. He has vision problems as well. He is very intelligent and has no problems in school, gets good grades etc.. In the last 6 months or so he has gotten up a few times at night and says he can hear talking in his head which was my red flag with Lyme. He is very sensitive and not the most adventurous child also, not sure if I would think it has anything to do with Lyme though? He is also on a 3 month cycle of Antibiotics, but is on 2 diff. ones.
Hoping 3 months is all they both need. From what I understand the hope is to treat them before things get out of hand, I don't know if I would want to wait for more obvious symptoms of Lyme before treating, I know once I showed my first signs it spiraled downhill VERY fast, I wouldn't want to see that with my kids??? Just my opinion though, I personally wouldn't wait.
I understand your concern about your husband and Lyme being your life. I feel the same way, it is Lyme all the time, we look at each other all the time and question how in the heck did this become our life. Feel free to send me a message if you want to talk more about it Posts: 76 | From IL | Registered: Oct 2010
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tickled1
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Thanks everyone for responding and I'd love to hear more from anyone who wants to offer any info. I am so sorry for anyone that is watching their kids go through this.
Is treatment for kids really that much simpler in general? I really hope so! That would be so much easier to deal with.
NEMOM, I am so so sorry about your daughter. I pray that she recovers with treatment.
apljack, did your 12 year old have a fairly normal life and do ok in school and such before you decided to treat?
Posts: 2541 | From Northeast | Registered: Jan 2008
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lpkayak
Honored Contributor (10K+ posts)
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i couldn't read all here but those of you with llmds...maybe you should have them do a consult with dr j...i would not put it off
with adults the sooer the tx the better the result...why would it be differennt?
**edited to remove LLMD's name** See Lymenet Rules
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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jackie51
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tickled--my 12 year old's memory was shot. I figured it was hormones. She was also very irritable and emotional. Again, very hormonal like.
But, she tested positive last April after being sick and having neck pain. They did not treat long enough, so her knees blew up in the fall. They diagnosed with osgoood schlatters, which she actually does have in one knee.
It was the memory and word recall issues that brought out the red flags for me. It put it all together.
yes, she is an A student, but she puts LOTS of efforts into it. She does all extra credit, and she studies very, very hard. It takes her a long time to get something very simple. The phonics issues are overwhelming.
While I was a little hesitant to bring her to an LLMD, the treatment has been amazing and she is feeling so much better. She also has low Vitamin D, a very common occurence these days.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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tickled1
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apljack,
Thanks so much for sharing that info w/me. I'm so glad she is feeling better!!
Posts: 2541 | From Northeast | Registered: Jan 2008
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jackie51
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To add more--Had I not been on this website all the time, I wouldn't know that her case is probably congenital. She was born with a heart murmur, had cradle cap, and a small breathing tube (the word for this escapes me right now). She would get croup with everything viral that went around (until 7-8 yrs old). She also had very, very bad excema around ages 3-5.
Everything can be explained away, yes, but there were just too many symptoms for me to ignore.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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I have a good Lyme friend, all 4 sons have congenital Lyme. All 5 (mom included) are on PICC lines, it has and continues to be a long, hard struggle for them; it breaks my heart. I would bring her to an LLMD and have her evaluated and tested ASAP, I would not wait. Not to scare you, but not all child cases are simple and "easy to fix." And, as you know, the longer it's entrenched, most likely the more difficult to treat.
I had a tick removed from my 11 year old's neck about 1 month ago. I sent it to Igenex to have it tested, results did not come for about 3 1/2 weeks. In the interim, he was on doxy - I did not want to take any chances and I have a friend who is a ND who agreed to rx the abx and consult with my LLMD on proper dosing, drug etc. I have been battling this for several years; I just wanted to take every precaution with him and we had the luxury of knowing about the tick.
The result, was positive. I am so thankful we began abx the day the tick was removed. Of course, it's not certain that the tick transmitted LD; however, it was embedded for about 48 hours, the removal was not "clean" etc., so the likelihood is high. He will remain on abx for 6 weeks and then have a Western Blot....like, apmom, we also reflect on Lyme being "our life." It's crazy. We live in the NW, Lyme doesn't exist here...ugh! Good luck, hope you'll have her checked; trust your God given intuition - it's there for a reason! TS
Posts: 566 | From West Coast | Registered: May 2008
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lpkayak
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yes-the whole time my kids were growig up i txed tham a month with doxy for every bite
i think our situation would be worse if i did't
there were may ticks-each kid reacted different to bite and to tx
the osgood slatters triggered a memory for me
my one son that never got dx was sx with that and wore a cast for a yr---full leg cast. will never for get putting a garbage bag over it when we went to water park!
that same son had a paralyzing fever once for 24 hrs...huge pain...he screamed when i pulled the sheet to get him to the edge of the bed...next day doc said..."oh-its just a virus" this kid could not move from waist down
later that happened to my dogs after their 3rd lyme vaccine shot
it was b4 lyme was eve on my radar
he finally got dx a few months ago at 36 with bad cluster headaches---off the chart on igenex--pos cdc
BUT...like the others he is i denial-thinks my tx is what makes me so sick...so he took one month doxy-oly 200mg...and thinks he is fine
hes an adult now. all i can do is take care of me and keep up on research
but you guys who have little ones i would think long and hard ad research and bottom line do what dr J says-he will consult with your doc
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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tickled1
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My LLMD trained w/Dr. J and I believe still consults w/him so hopefully she would be in good hands w/my LLMD.
Posts: 2541 | From Northeast | Registered: Jan 2008
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ktkdommer
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posted
My two boys tested positive for congenital Lyme- one stronger than the other. My sister's son at age 5 tested positive for congenital Lyme. We are all together for my oldest's graduation and it is so weird to see the IV's and pill boxes everywhere. I managed to throw a party yesterday but am beat today!! My youngest became so sick and was bedridden for 9 months during his freshman-sophomore years. I wouldn't wish that on anyone. If we had know we would have treated him years ago and possibly avoided all the long term chronic issues of Lyme. Best of luck!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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tickled1
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Kari,
I'm sorry to hear about the kids being sick.
So they were dx as teenagers but they are congenital? What has life been like for them through the years and through school and such before getting dx? Symptoms throughout the years?
Posts: 2541 | From Northeast | Registered: Jan 2008
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jackie51
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Curious--how do you test for congenital lyme? I'm pretty sure my kids are congenital lyme victims, but really don't have proof.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
*******Moderator's note - please refrain from using Lyme practitioner's names on the board. Thanks. *******
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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ktkdommer
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My oldest has been the healthiest although he has had swollen glands for at least 9 years straight. He has had TMJ pain and hip pain we thought were normal. He is now focusing better and is less irritable since treatment. My youngest has been sickly since birth but met all milestones. He started with migraines and ADHD, then cyclic vomiting syndrome, FMS, POTS, OCD/ODD, gastroparesis and bi-polar tendancies. Each year it was something new more meds, another medical specialist and no answers. Every virus triggered something else to fail in the autonomic nervous system until he was bed bound. Their immune systems seemed to keep things in check while young, especially my oldest My oldest just graduated with honor's and a high GPA, while my sickest and youngest had to go on an IEP and currently has 3 F's heading into finals as a junior. He is congitively impaired doing daily IV antibiotics and at 16 it is the hardest thing to deal with To tell if it is congenital, my kids have the same coinfections I do and their labs show chronic infection. One's CD-57 is very low showing long term Lyme. Kari
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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tickled1
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posted
Kari,
I really do appreciate you sharing the details. I certainly have a lot to brew on. This disease is such a nightmare. The only thing worse than going through this myself is the possibility of my child having it as well, and getting it from me to boot!
Posts: 2541 | From Northeast | Registered: Jan 2008
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Geneal
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posted
After both my husband and I were diagnosed with Lyme,
I had my two children tested via Igenex after doing a search on congenital symptoms in young children.
They both had Lyme specific bands.
They were both treated for about 1.5 years.
They were 4 and 5 years old at the time.
When your 5 year old tells you that they feel "shakey" and sleep alot and complain of joint pain,
It is kind of a no-brainer. I was scared to test them.
Scared of knowing what I deep down already knew.
However, their health was more important than my fears.
I will never regret having them tested.
BTW, my second child had more subjective symptoms.
Slow with physical milestones such as sitting up unsupported, and walking.
Red pinnas of the ears and sleep disturbances too.
He had more positive bands than anyone else in our family.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
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I'm incredibly stressed about this b/c my husband and I are in complete disagreement on this.
He said he doesn't see a thing wrong with her. I see plenty. There's the behavioral issues, hyperactivity, difficulty focusing, difficulty settling down to sleep, excessive thirst during the night, she had 6 mos. of "growing pains", may have herxed on bactrim (fever and rash), and her behavior improves every time she does a course of abx for whatever reason. Oh, and her teacher said she's been having difficulty following simple instructions. That's what I can think of off the top of my head. She also often says "I'm bored" which always means she's either really tired or sick. He actually believes that she's bored but that is not how she uses that term. See that's the difference between the subtleties I know about her. She is having a hard time controlling her anger as well. And is very fidgety.
To anyone else on the outside though she appears to be completely normal. She comes accross as very energetic and is very smart. Anyone would think I was crazy.
He does not want me to mention it to my LLMD or have her tested at this point. It is driving a wedge between us.
Posts: 2541 | From Northeast | Registered: Jan 2008
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jackie51
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tickled--you need peace of mind. Why does he really care if you test? Is he afraid of the outcome? I would be curious why he is so against it. It's only a blood test and/or a doctor's visit. My husband also thinks I'm crazy, but their health is certainly more important than my sanity.
I would go for the "it's okay if I'm crazy, I still need to get my daughter tested".
My 8 yr old does the "I'm bored" too, so I know EXACTLY how you feel about this. She's really at a roadblock and doesn't know what to do so it buys her some time.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Have you considered asking the school for an evaluation?
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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Geneal
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posted
If it is a money issue, then of course I understand your husbands point.
However, if not, then just do the test.
If it is negative then he can say that he told you so.
If it is indicative of Lyme, then the focus becomes treating.
Sending prayers to you for answers and a direction to go in.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
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Money is tight but if he believed she needed to see a doctor or start treatment money wouldn't be an obstacle. But, he doesn't agree that anything should be done right now.
I think he may be in denial or he doesn't know the symptoms of congenital Lyme and refuses to read about it b/c he's Lymed out. If I start to preach about all I know or have read about congenital Lyme he gets upset too b/c he says I am obsessed and spend too much time on the computer reading about Lyme.
As far as getting her tested, he says I already did (but it was through Quest-positive band 41).
I think the rest of it is denial b/c of all we've been through w/my illness and he can't imagine going through it all over again. We get into huge fights about the whole thing. To be honest, I think he could have it too. He is a hunter and has gotten several tick bites throughout his life and he seems to always feel sick/tired.
Also, if we do an Igenex test and it's negative then he will dismiss it for good and from what I understand, she could be negative and have it.
Racer, she is only in preschool. Things may become clearer once she starts Kindergarten.
Posts: 2541 | From Northeast | Registered: Jan 2008
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ks90
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I had ADHD which I found out was due to Lyme Disease. Will be back to normal very soon.
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