I was recently diagnosed with lyme, but clearly have had it since childhood. Was very sick with both my pregnancies, and afterwards.
My eleven year old shows clear neuro and arthritic lyme symptoms. We're doing a blood draw on Monday.
My three year old- not so much, especially since she went through several courses of antibiotics as a little thing for a persistent ear infection.
She got a very bad rash from a cephalosporin. I thought it ws an allergy. Could have been a herx.
I want to know "for sure" if my three year old has Bb in her system, but I'm afraid of putting her through the trauma of holding her down screaming for a blood draw.
She used to have terrible neck pain, but it was relieved with CST and chiropractic. For about two years she couldn't sleep for more than two hours at a time.
She's very smart, and apparently not neuro at the moment, but can get crabbier than all get out, and inconsolable. Occasionally she complains of aches and pains, but that could be normal childhood owies.
Half the time I am sure that I have to do hold her down for a blood draw, for her own good at any cost. The other half of the time, I'm sure I don't want to do a blood draw, and to wait until she's older if she is showing signs of needing treatment.
What would you do?
Posted by hshbmom (Member # 9478) on :
I'm having the same problem. My 3 and 5 year olds complain of bone & joint pain, which has spread to one child's head and neck. I've pulled ticks from both of them. The 3 year old was nursing when I was infected. 5 of us have been diagnosed with Lyme.
I'm going to have them tested them with the new flow test.
It's a hard decision. It can't hurt (except temporarily), but can certainly help get them treatment.
I'd take cave's position if I could just get an appropriate dose & quantity of antibiotics.
Posted by Geneal (Member # 10375) on :
I am going to have my 5 year old tested due to many recent infections and strange compliants such as
the bottom of my feet hurt and such.
I am going to hold off a while on my 3 year old, unless his sister's test is positive.
He has been on antibiotics a lot lately and I've never noticed a herx. My daughter's reaction to antibiotics is questionable (ie herx).
I feel the same way you do. I really want to know, but even with Igenex testing how can I be sure?
I worry a lot about my children and their health. I feel your pain on this decision. I am trying to make the same one and the right one for all of us.
Posted by panicbegone (Member # 10760) on :
its horrible isnt it. im going through the same exact thing. I think i may have given my three year old lyme in utero. He complains daily of stomach ache but now on top of that he's mentioning his back and lower legs. i planned to have his blood drawn but he freaked out screaming and so scared.I felt awful..he was frightened to death . I didnt end up doing it. My llmd said just to watch him to see if he starts having developmental/cognitive issues and things like that. Not to test yet and that its ok....to work on myself for the moment so that i can properly take care of my kids and then deal with their treatment later if need be.
If my lil guy has to go through all that im going through with meds, i want him to be a lil older, even just a few years...to be able to understand it.
Posted by bejoy (Member # 11129) on :
Thanks for all your replies. Its nice to know I'm not in this alone in this conflict about testing and treating little ones. Your responses have given me food for thought.
I realize that I am not ready to treat her with abx right now anyway, since she doesn't seem to be symptomatic.
The thought of trying to keep her away from sugar at preschool and birthday parties is overwhelming. The thought of trying to treat full blown baby candida on top of everything is just over the top.
But I definately would treat her with gentler methods one way or the other. Some kind of test results would make me more committed to the follow through.
I think I'll order Dr. K's ART lyme test kit, and take it to one of our alternative practitioners and have her tested via kinesiology. If she comes up positive, I think I will treat her with homeopathics and microcurrent.
If she gets symptomatic over the years, or ready to handle a blood draw, we'll send in a flow cytometry to CFR. Or else I'll get a challenge run on abx and then send in a urine PCR to IGeneX.
What do you think of those ideas?
The tough part of using alternative methods is that even though there seems to be consensus amoung lymies that they can be fairly effective,
try to ever explain to family and friends that your family is dealing with a serious and very real illness. You just can't.
Or if they get it, then they want you to walk don't run, straight to a duck.
Hopeful for more feedback.
Posted by sixgoofykids (Member # 11141) on :
Bejoy, since we are treating to eliminate symptoms and strengthen the immune system to keep the symptoms at bay, I see no reason to treat someone who has no symptoms.
My LLMD said that I didn't need to get the kids tested unless they showed specific Lyme symptoms. I have one daughter with learning disabilities and he didn't necessarily think she needed to be tested in the absence of other symptoms of Lyme.
I think your ART idea and natural immune support is a great idea. I tell my teenagers all the time that they have to be careful with junk food, lack of sleep, and stress because they probably have the bacteria, it just hasn't become a problem for them.
Posted by panicbegone (Member # 10760) on :
You put so much thought into this and you have so much information on alternative testing. Good for you. Please feel free to stay in contact w/ me as i have a 3 year old in the exact same position and not sure what to do. But i agree about the trama and dealing with antibiotics and candida on top of it...its too much with not enough evidence to know if its even gonna help.
Keep us posted on your childs health and please...if you decide to do either of the tests...let me know how they worked for you .
And yes...its almost a joke trying to get people/family to understand the nightmare you and your kids are going through. I know that by experience. Im so sick i cant do a thing w/ them but the basics. Good luck to you.
Posted by Cobweb (Member # 10053) on :
My now 16 year old wasn't diagnosed with Lyme until she was 15.
When she was three she was obsessed with needles.(She liked them!) She also had rounds of antibiotics as a toddler for chronic ear/sinus infections.
Anyway- one night in the ER (she almost lost her legs to chicken pox)instead of a sticker, she wanted a hypodermic to play with-which they gave her(sans needle point)! Carol
Posted by Doomer (Member # 11013) on :
What about using the urine test from Igenex?
Lyme Dot-Blot Assay (LDA):
The LDA was designed for the qualitative detection of Borrelia burgdorferi-specific antigens in human urine. The assay detects B. burgdorferi-specific antigens 23-25kD, 31kD, 34kD, 39kD, and 93kD.
Posted by Lisianthus (Member # 6631) on :
Not sure where your from bejoy, But Dr. Jones (Conn.) is fabulous with kids and needles.
My nephew sees him, and was mildly autisic. There was no way you were going to hold him down for anything. But Dr. J like the saint he is took 2 hours with to calm him and promised him they WOULD NOT hurt him at all.
And they didn't, they put numbing cream on his arm and he never felt a thing.
If Dr. J is not an option maybe your own doc can order this cream. I got some for my son, although he is alot older, he was terrified of needles and shook the whole time in the docs office.
Good luck, Lisi
Posted by k-lyme (Member # 5574) on :
I agree with cave. If your little girl does in fact have Bb, testing her blood is a crap shoot because this damn disease has a brain and likes to play hide and seek! Obviously, this is yours and ultimately your doctor's call, but after four years of treading through this crap and thoroughly educating myself on the subject, my best non-doctoral advice would be to ask your doctor to put your little girl on a two week course of doxycycline. This course is what the DUCK text books say will cure lyme, but as far as what REALLY happens, some of my LLMD's over the years have said that they pulse doxycycline in two week intervals and often times the patient will see something happen within the first course of treatment. It might give you your answer. At that age, I definitely agree, a needle stick could inflict more harm than good (pysch problems).
Good Luck to you, and I hope you and your children feel better soon!
Take care, K-lyme
Posted by LymeLaura (Member # 6624) on :
Don't forget not to give doxycycline to children under 8. It can cause permanent staining of the teeth!
Posted by MariaA (Member # 9128) on :
Yes!!!I believe it stains the PERMANENT adult teeth, not the baby teeth. Use a different antibiotic if you're going that route.
SElma (hardynaka on this site) treated her small child (under 3?) for Lyme with herbs, successfully, when she was doing the same thing to herself (also successfully). Perhaps you can ask her to weigh in here on those therapies?
Posted by k-lyme (Member # 5574) on :
I stand corrected, and I also learned something from you who did correct me, so thank you. I knew that doxycycline could discolor teeth in adults and younger children (like 10+ years), but I didn't know that doxy interferes with the forming of tooth enamel. Up until when I read the responses after mine, I thought doxy did not pose a threat to teeth, now I wonder. I am not a child under 8 years old, and I realize now that I am obviously not familar and very uneducated as to the treatment of small pediatrics with Lyme. I was 13 years old when I contracted Lyme, which is quite a bit older than three years old. I am extremely embarrassed as I pride myself on providing accurate information to others in need searching for help. If I may though, to redeem myself perhaps, suggest something to you. Dr. Burrascano (one of the worlds foremost lyme gurus, if your not familar), came out with an extremely informative phamplet called "Dr. Burrascano's Hints and Treatment Guidelines for Lyme Disease and Other Tick Borne Illnesses", which can be accessed by going to www.ilads.org and clicking on the section "treatment guidelines". Anyway, there is an extensive information in there on pediatrics and different treatments that are most effective.