Topic: Update on my twin 4 year old boys' visit to Dr. J
tickbattler
Unregistered
posted
Hi all,
I have been watching one of my twins for the past year and actually took him to see Dr. J a year ago. At that time, he only had band 41 show up (Igenex) and his symptoms were so vague I couldn't determine if he had lyme or not. Dr. J suggested we treat him for at least a month of abx to see if anything changed. I couldn't determine if it had and I still wasn't sure about the lyme so I wasn't comfortable with longer treatment. I was new to the lyme world at that time.
I recently retested him through Igenex and while he was still negative, band 34 showed up with a few other lyme specific bands showing IND. I also tested him through Fry labs and his smear showed either bart or mycoplasma.
In the past couple of months, my other twin boy started saying his stomach hurt occasionally. He then started to become more emotional and sometimes said his head hurt. He would also say, "ouch" and I would ask what's wrong and he would point to a muscle and say that it hurts. This would go away after a couple seconds.
This would only happen 2 to 3 times/week. But knowing now what I know about lyme, I decided to have him tested too. Well, his test actually came back positive for lyme through Igenex with bands 31 and 41. And he had a positive bart titer for both quintana and hensalea, as well as bart or mycoplasma showing up on the smear.
Dr. J saw both boys last week and started them on zith 1/4 teasp twice a day as well as bactrim 1 teasp twice a day for the treatment of lyme and bart. We do this for the next 3 to 4 months until we see him again. Did any of you have success on this protocol?
He also tested us through the lab he likes to use now called Clongen. Did any of you get tested through this lab? We will have the results in a couple of weeks. It will be interesting to see if this is consistent with Fry.
Another interesting thing to note is that Dr. J said that bands 31 and 34 are very significant, and they both take a year to show up in testing. So my boys have been infected for at least a year.
It is so strange giving all these meds to my boys when they appear healthy and run around and play like other little boys. The rarely complain that something hurts. I hope I am doing the right thing. I do think I am because there are so many suspicious things. And I am terrified to take the chance that they get as sick as my husband is. I just can't believe that 3 out of 5 of us are infected.
I mentioned my symptoms for one twin above and the other one also has vague symptoms: he only sleeps about 10 or 10.5 hours which is really not enough for a boy his age. And he wakes up sometimes for 2 hours in the middle of the night. He blinks his eyes a lot and has mild sunlight sensitivity. He is ornery and often difficult. His ears turn bright red often. He has had numerous ear infections and gland and sinus infections. His colds always last 2 weeks.
I'd love to hear about your child's symptoms and treatment, especially if they sound similar to mine.
posted
I am awaiting my 4 year old son's Igenex results. He was tested last tuesday so I have atleast two weeks before I find out. He too is running around fine but gets the red ears ( pinna) which I have. Also every cold turns into bronchitis.
I am also worried because, I know I had lyme before he was born. It is a worry but thank goodness you know better. It is better to be informed now than on an uninformed road to disaster.
Best to you and your sons. Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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posted
Interesting, has anyone else been told that 31 & 34 take a year to show up in testing? I thought I just got sick last summer, but my IgeneX IgM came back with 31 ++++ and 34 ++, as well as numerous other bands being positive. I see Dr. C. and he didn't mention anything about that to me?? I guess it doesn't really matter, just curious.
I wish you the best with your boys. If my son tested positive and had symptoms, I would treat him also. You are probably sparing them a lot of agony down the road.
posted
Thanks for your kind words. After only 5 days of ABX, I feel that one of my boys is already doing better. He has not mentioned any pains or headache since the second day of the meds! By the time we started him on them, he was having some kind of symptom about once a day.
quote:Originally posted by sixgoofykids: Stacy, my LLMD saw my +++ at band 31 and said I had Lyme for a long time based on that.
Duh me! Yep, I've heard THAT!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tickbattler
Unregistered
posted
sixgoofykids-
Thanks for your encouraging note. Just curious, how long has your daughter been off meds? Do you feel that it is "cured" or are you concerned about relapses? I have heard that children often do very well with treatment.
RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
Whatever DR.J says go with that because he is the best.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I've had this as long as Tutu and one of the only bands that keeps showing up as IND, the best I've done!) is 31.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tickbattler,
My children that are positive aren't as young as yours, but the only thing I can really say is that I can feel your heartache since all we want is for our children to be happy and HEALTHY.
This is a scary thing to go through as a parent. My daughters had very vague and general symptoms too, but since this lyme had crippled me, I was on alert and watching anything since there was no way I was going to let them get as sick as I did.
I will say that having Dr. J in your court is definitely the way to go. You are a wonderful mom. Try to hang in there. You ARE doing the right thing!!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Another interesting thing to note is that Dr. J said that bands 31 and 34 are very significant, and they both take a year to show up in testing. So my boys have been infected for at least a year.
Thanks,
tickbattler
When we finally got my youngest's ASO titer down into the "normal" range he had 5 bands that were ++ or more including 31 & 34. He was actually CDC + - labcorp. Previously tested by Igenex with weak activety. He is also IgAD. Many things can effect the ability to "show" results but it doesn't change the actually dx.
He had few symptopms. Primarily - he fell down once in awhile for no apparent reason. He eventually had GERD, allergies, stomach problems and failure to thrive but all were slow. Only one of my children with lyme disease (a twin) is sickly and then she hides it pretty well from general population. Only I know how often she requests meds for pain in joints and for headaches, etc.
Not all things are ld with kids and because they are so resilent you will never see all the symptoms either.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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