posted
Hi, I'm new here. I'm pretty sure I have Lyme and may have had it for a long time. I have no clear time for when it started. I have two children aged 2 and 6 with multiple health problems that never seem to be clearly defined. Lots of symptoms but all tests come up negative.
I'm thinking they may also have Lyme and plan to test the soon. (waiting on igenex confirmation for me right now.) I've got an appointment with a LLMD for me in Oct and then in Nov (soonest available) but want some help now. They haven't ever had abx for any reason and yet struggle with candida and lots of gut flora issues.
I'll post a seperate post about me I guess. I'm just looking for some good resources to help understand symptoms in young children and options for helping them now.
Posts: 34 | From St. Louis | Registered: Jun 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi yankee,
Sorry to hear this. My entire family has lyme including my 6 year old twins and 3 year old girl. The kids are much better since they have been on treatment, but are not fully cured yet. I would be very suspicious of the multiple health problems if you have Lyme. It tends to run in families because you are in the same environment and have a similar genetic makeup. You also could have passed it to them congenitally.
I had to diagnose my kids...did an Igenex for each one of them even before I got them to an LLMD. Two of the three had negative Igenex tests but later one got a positive, once abx treatment was started. My 3 year old daughter never had a positive lyme test but had suspicious symptoms and later tested positive for bartonella and babesia, so that confirmed the lyme was present. I started treating her when she was 2, even though I wasn't totally sure she had lyme. I had seen enough symptoms to feel about 80% sure she had it and I didn't want to wait any longer. I'm glad I did treat her. She used to wake up so cranky in the mornings and would be up at 5 or 5:30 most mornings. She also would be crying numerous times during the night with nightmares. Now she wakes up happy and sleeps until 7 or 7:30, which is much more normal. She hardly ever has nightmares any more.
If I were you, I would get them tested through Igenex to see if any lyme specific bands show up, even if they get a negative. That would show exposure to lyme. I would also read though posts about children on here...you can do a search for my posts...I have many old posts as "tickbattler" and more recent ones as "tick battler".
One thing I wish I had discovered earlier was the electrodermal screening machines. If you can find a good practitioner, I beleive it is one of the keys to Lyme treatment because the machine can determine which infections you have and which herbs or drugs will work against them. This is invaluable, since that one of is the most difficult parts of this disease...you are treating so many infections and are often shooting in the dark with meds, not knowing if they are working or not.
Another thing you could try now if you can't get into a practitioner is the nutramedix herbs...the Samento, Cumanda and Enula seem to be working for my children even better than the abx did. You should read up on the Cowden protocol and the nutramedix products. If you decide to go this route, I can give you dosages, etc. that we use for the kids.
Best of luck to you.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
This is a good thread. Tickbattler-my 17 month old son is exactly like your daughter. He wakes up multiple times at night crying and wakes early in the AM and is cranky. He always needs a nap in the AM.
The dentist said toddlers are better in the AM, I said, "not my son". I have long thought this is due to TBI's. Just got him tested at Igenex. Babesia, both strains was negative and lyme had a few positive bands but nothing enough to treat.
What labs did you use to get a positive babs and bart on your kids?
Posts: 1104 | From N.California | Registered: Jan 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi blinkie - You say, "nothing enough to treat..." I would just be careful determining treatment on the Igenex result alone. Remember - lyme is a clinical diagnosis. Children should wake up happy. There is a reason he is cranky, although it may or may not be lyme. I would watch for other symptoms. My daughter had intense itching of her scalp and body as well, especially after sleeping. She sometimes would point to her head or ears when I asked if anything hurt. Others didn't believe she was telling the truth, but I knew she was. This was not every day. It was on these symptoms alone (along with the night waking and crying) I asked the LLMD to treat her. Oh- she was also very warm all of the time, especially her head.
My daughter had ONLY band 41 on Igenex, which is not lyme specific but could be lyme. It is often the first band to show up, if it is indeed lyme. My son had the same thing and I waited a year to figure out it was lyme. I didn't make the same mistake with my daughter. I pushed the LLMD to do a treatment trial to see what happened. She got a positive bart hensalea test from Specialty labs about 4 months into treatment. About a year into treatment, her Igenex FISH and duncani tests turned positive. They were negative many times before that. You just CANNOT use testing alone to determine whether to treat.
Ask you son if anything hurts. Young children don't know what normal is. They may not tell you when something is hurting. I ask my 3 kids several times/day to determine progress, herxes, etc. They normally tell the truth.
I hope you get some answers soon. The night waking and crying/whining happened to one of my twin boys before happening to my daughter, so that helped me figure out my daughter's case earlier.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
This "special edition" of Lyme Times magazine should answer your questions about what to look for in children. It is full of information.
I highly recommend it for any parent who suspects Lyme.
I have no affiliation with this site. It is best to treat children while they are young. Treatment is most successful then. Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Thanks, hoosier and tickbattler.
I know that I need to look for symptoms. He is just now geting to where he can tell us where he has an "owie". That just started last week.
Many times, he points to his arm/hand. Either that or his teeth. Kid has 4 molars coming in so that makes sense.
I don't know if my LLMD's will treat such a youngster without positive tests but I don t want to spend all the money on them because they suck.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
That looks like it might be good but $10. Wow everything about Lyme is expensive.
Posts: 34 | From St. Louis | Registered: Jun 2010
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posted
That looks like it might be good but $10. Wow everything about Lyme is expensive.
Posts: 34 | From St. Louis | Registered: Jun 2010
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