I have chronic Lyme and believe I had it in both my pregnancies.
It "activated" after the birth of my second daughter. That was almost
4 years ago. I've been "waiting and watching" for any signs with
children. I decided to have IGENEX labs run on my youngest during
a recent medical procedure since she was sedated. The order was a
"courtesy" from an adult LLMD but he won't really interpret the
results for me. He did say go to a pediatric LLMD for
interpretation on the lab slip. No discussion though.
She was Negative from IGENEX and CDC standards but showed
positive for bands (IGM) 18, 41, she has 1 + (not 2) next to 58
and IND for 83-93.
IGG showed positive for 41, 58, she had 1 + (not 2) for 45, and
IND for 31
Her PCR was negative.
Any input on the significance? She is functional, doesn't act "sick"
but has low energy, difficulty sleeping, is twitchy when she rests
(a lot like my twitchiness) and has occasional neck pain
(sharp pain), sometimes she says her head or legs hurt but very
transient, she was having chronic ear infections but that's
not too atypical in kids...It's hard to know when you are trying to
assess a 3 year old. I've been living with this misery and certainly
don't want to miss anything with her.
Posted by TF (Member # 14183) on :
From Burrascano, page 7:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes.
The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all.
You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic."
I can't understand what you mean when you say she is "positive" for 18 and 41 and then you say she had "1 + (not 2)" for another band.
So, what do you mean by "positive"?
How about just listing the test results the way they are on the paper--just the positive and IND ones. Then we will know exactly what the results are.
She has some important bands as you can see from the Burrascano quote. The question is, does she have enough symptoms that a lyme specialist would treat her at this point.
So, if you take her to a lyme specialist, it will all depend on your description of her symptoms and what the doc sees by looking at her.
Here is what one top notch child's doctor told one lady whose daughter had positive bands indicating lyme and some lyme-like symptoms:
"Dr. S said that alot of times she does not like to treat kids right away to see if their immune systems can kick it back but she thought that my daughter had enough symptoms to warrant a 4-month antibiotic test. "
With another child, a 3 year old who had a huge amount of symptoms from birth (and the mother has lyme), the doc immediately put the child on antibiotics.
So, most likely, it will all depend on your description of her symptoms whether or not a pediatric lyme doc will put her on meds.
............................................
(breaking up a paragraph for easier reading for many here)
[ 04-20-2016, 06:29 PM: Message edited by: Robin123 ]
Posted by Dekrator48 (Member # 18239) on :
It is very possible that she has been exposed to Lyme, with the positive IgM band 18 and IND on bands 83-93 and IgG band 31.
However, it has been my experience that not everything is caused by Lyme even if we have been exposed to it.
Our immune system can sometimes fight the infection successfully.
My grandson was having some similar symptoms as the ones you mention and they were caused by Candida (yeast) overgrowth.
Candida is very common due to the standard american diet which is high in sugars and also from antibiotic use.
When he did an elimination diet his symptoms improved greatly.
In recent years I have read a lot of articles and watched a lot of functional medicine talks.
Our gut health is crucial for our overall health and healing from any chronic illness.
Many things can disrupt our gut health and antibiotics are one of the biggest offenders.
Sometimes antibiotics are very necessary and I took them for 3.5 years myself and then again for a year recently.
However, if one can avoid antibiotic use as much as possible, it helps prevent the development of leaky gut and subsequent food sensitivities and autoimmune diseases.
I mention all of that to encourage you to think about more common problems like Candida before thinking that her symptoms are from Lyme.
If addressing candida doesn't help her symptoms then I would think about other root causes such as Lyme or coinfections.
Your daughter has probably taken some courses of antibiotics for ear infections. That can lead to gut dysbiosis since the antibiotics kill our good gut bacteria. This leads to an overgrowth of candida too. Sometimes it happens even when taking some probiotics.
Here is some info about Candida that may help you:
Many people think that just even one positive Lyme-specific band is enough. You say she's got a positive 18 - that's Lyme-specific. Band 58 is a heat-shock protein. IND is a weak positive.
My vote would be for her to see a Lyme doc.
Posted by mamalicious (Member # 43611) on :
Thanks. With me the Lyme was there suppressing my system just
enough that I had to walk a tightrope for years trying to stay
healthy, I was prone to illness and injury, I was seen as a "hypochondriac" as I always had a problem.... then it conquered and took me down.
Just trying to stay ahead of it with her.
TF the results look like this: IGM 18 ++ 41 ++ 58 + 83-93 IND
IGG 31 IND 41 ++ 45 + 58 ++
Posted by bluelyme (Member # 47170) on :
I also have band 18..i heard it is rare...i wonder if it is sw thing...how are you going to treat? I have a three yo i would like to test..kudos on being proactive..
Posted by TF (Member # 14183) on :
Double plus is a strong positive. The max is 4 plusses.
But again, with the little ones, they won't treat a child with a positive test who is not symptomatic.
Posted by Robin123 (Member # 9197) on :
TF, is that the way it always is, that they won't treat a child unless the child is symptomatic?
I can see another POV which is, if the child tests positive, to strengthen that child before they need to become symptomatic. - ?
Posted by TF (Member # 14183) on :
Robin, yes. Dr. J. says that if they are not symptomatic, to leave well enough alone. He will NOT treat no matter how positive the test. The other pediatric top doc, Dr. S., is the same.
If the child is positive but not symptomatic, the immune system is handling the infection. See the quote from Dr. S above.
Posted by mamalicious (Member # 43611) on :
TF- Thanks. I was wondering about the plusses..
As for her symptoms there are some things that I think are strange for a 3 year old, like neck pain, but it is intermittent. She sleeps very poorly and started getting "twitchy" like me when she lies down. That symptom started when she was 1 and it is just like me. I get anxious lying next to her as she falls asleep and both our bodies have all these involuntary movements. Like mine her twitches are not very visible when active.
She doesn't seem overly fatigued but is much lower energy than her older sister. She is much more prone to illness than her older sister. She was getting one infection after the other and for a while and I kept thinking she didn't seem to ever feel well. But 1 month after getting tubes/adenoids removed she seems a bit perkier and not as sickly.
Every once in a while she tells me to turn off the lights because they hurt her eyes but it isn't consistent..
So is she super sick? No.. Some signs, maybe? I'm thinking I may start with more of a ND/ functional medicine type doctor vs intensive antibiotics...
Posted by TF (Member # 14183) on :
Read the Burrascano Guidelines starting on page 28 where he lists supplements for lyme patients in order of importance.
I would put her on about 10 core supplements since that is what Dr. S did with the 3 year old I know of.
In your daughter's case, definitely give her a good magnesium and see if those twitches go away. Natural Calm is a good one and comes in various flavors. You mix it with water.
Some supplements can be opened and sprinkled on food. So, this is how they give supplements to a child who cannot yet swallow pills.
Whoever you go to, be sure they are an expert on lyme disease. Otherwise, I would say the appointment is a waste of money.
Posted by bcb1200 (Member # 25745) on :
My LLMD also treats kids and is well known (Trained with Dr. J)
He will not treat kids unless symptomatic, even with positive results.
Posted by ohioperson22 (Member # 47837) on :
bluelyme... p18 is rare? What does that mean? A special strain of lyme?
Posted by duncan (Member # 46242) on :
I don't think that p18 is necessarily all that rare. I have been tested 25 times at least, and most times I've bagged an 18 band - at least IgG.
Posted by bluelyme (Member # 47170) on :
I see 18 is just a outer surface protien..llnp just aid she doesnt see it often. .
@mamalicious. You have the option to treat with rife ,or herbally before they become more symptomatic ...i agree with tf...keep us posted
Posted by mamalicious (Member # 43611) on :