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Posted 9/7/2015 8:03 PM (GMT 0)
Should I treat this?

Should I have him re-tested, and if so, when?

IgM= 23 negative
39 indeterminate
41 indeterminate

IGG= negative

Hes' 3, so does he have tantrums? Sure. Is it normal 3 year old stuff? Probably. Is it Lyme? I don't know. He's never had a rash. He's energetic and never complains about feeling sick. He does have peanut allergies, but I don't see how that would be related.

His pediatrician said he won't treat based on this, but his pediatrician also goes by the AAP, and does not believe Lyme is passed congenitally.
Posted 9/7/2015 8:12 PM (GMT 0)
IND means that it's on it's way to being positive. The test is looking for antibody response to Lyme specific bands. It's reactive to those bands, just not strong enough yet to be fully positive.

I'm assuming you have/had Lyme. Did you or do you still have an LLMD? If so I would certainly see the LLMD.

39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection

Lyme specific-Don't wait and see. You know that's a dangerous plan of action.

Stop it before he starts school.
From one mom to another
Janet
Posted 9/7/2015 9:45 PM (GMT 0)
What prompted you to test him..if he doesnt have symptoms?

Did you have LD when you were pregnant with him?
Posted 9/7/2015 9:48 PM (GMT 0)
I agree with Janet. I was a child that grew up with these infections and you wouldn't think that they would add that much to the body, but they can and do create a lot more issues than any child would have otherwise. I missed out on a lot of school and never completed college because of them, and it has completely taken over my life as an adult.

Treat herbally if you don't want to risk the pharma abx, but please treat. With test results like that, he has Lyme, and maybe other infections as well. It's best to treat now, while it's much easier to get rid of/get under control than to make him wait and suffer until he finally starts showing a ton of symptoms that can't be denied.
Posted 9/7/2015 10:56 PM (GMT 0)
Thanks Traveler and Janet.

I'm receiving conflicting information about this. There's those who suggest treating, and those who say that if he is not symptomatic, then working on immune support and gut health will be enough.

I was told that many LLMDs will not treat him with these results.

I suppose my biggest question is about how I know what to give him and when to stop. For example, if I choose to treat him with herbs, and he has no symptoms, then what am I looking for? How do I determine how long we treat if he doesn't even have any symptoms?
Posted 9/7/2015 11:24 PM (GMT 0)
I think anyone that has had these infections as a child will tell you to treat - why? Because we know what it's like growing up with it, and realize that the small risk you take with him now by using treatments, far outweigh the "possible" issues with unnecessary treatments. I know that I surely wouldn't want another single child to experience what I did.

With that said, if you wish to treat with herbs, here's what Buhner says about equivocal test results in a child:
"I would put him on astragalus 2000 mg daily to begin with. That should raise his immune function enough to deal with it. If it does not, then consider a modified protocol."

buhnerhealinglyme.com/lyme/equivocal-test-results-twice-in-otherwise-healthy-child/

And another one with a 4 yr old child: buhnerhealinglyme.com/herbs/protocol-for-4-yr-old/

Should you begin to see symptoms in him as you start that treatment, Buhner explains this:

buhnerhealinglyme.com/lyme/young-children/

And he has a section just for kids/teens: buhnerhealinglyme.com/category/lyme/children/

And I'd be willing to bet that he has a lot more information in his Lyme books!!
Posted 9/8/2015 12:39 AM (GMT 0)
As a mom of a four year old, I'd like to comment about his being asymptomatic. My little guy was born with Lyme and is almost healed, just having some symptoms once a month. He only started showing obvious symptoms shortly before his third birthday. Before that, we didn't realize there was anything wrong with him. Since he has been in treatment, he has become so much more vibrant than he ever was before. His personality and sense of humor have become so much more energetic than before, and he engages with others so much, when before he just did his own thing.

So while you may not think he is showing any symptoms, you might not know what he is missing out on. And I, like Traveler, have had these infections since childhood. I can't even begin to imagine how my life might be different if I had gone through treatment when I was young.
Posted 9/8/2015 2:17 AM (GMT 0)
Thanks for sharing Nosila. I'm thrilled your little guy is thriving.
Posted 9/8/2015 2:07 PM (GMT 0)
Thanks jrpsf. After decades of being told I was normal, and after seeing the difference between my son's old normal and new normal, I feel that it's so important to question our perception of normal, especially with the little ones. Even a subtle change now can really change their path for the future.
Posted 9/8/2015 2:20 PM (GMT 0)
Nosila- do you mind sharing how you decided to treat your son? With herbs or antibiotics? I am trying to figure out which route I should go....thanks :)
Posted 9/8/2015 2:38 PM (GMT 0)

Nosila said...

So while you may not think he is showing any symptoms, you might not know what he is missing out on. And I, like Traveler, have had these infections since childhood. I can't even begin to imagine how my life might be different if I had gone through treatment when I was young.

This is how I ended up having a 40 yr old infection. My mom and the doctors all thought it was just a part of my personality and they never really questioned it.

I heard things like "you always have a headache" or "you always hurt somewhere" as I was growing up. I assume my Mom felt like I was just a complainer, but what she and my doc didn't realize is that I actually have a very high pain tolerance, confirmed by many doctors and nurses as I've dealt with different things with my body as an adult. It's hard to understand that your Mom just didn't know when you tried and tried to tell her - and your doctors - but were never believed.
Posted 9/8/2015 3:01 PM (GMT 0)
Sniogra, our LLMD usually treats herbally first, with Beyond Balance drops. He started out with MC-Bab1 (babesia) and MC-PZ (protozoa) and is now on MC-Bb-1 (Lyme) and BC-Bar-1 (bart). Oh, also Cognease-Detox, which helps a lot. We increased to his maximum dose of all of the drops *very* slowly, as he had a lot of trouble with herxing. He also takes Argentyn 23 silver, as our LLMD believes it helps with biofilm. For general maintenance, he takes a multivitamin, fish oil, probiotics, and aloe vera juice.

Traveler, my experience with my mom was a lot like yours. She thought I was pretty dramatic about pain. I remember a time that I nearly collapsed from menstrual pain and curled up on the ground, covering myself completely with a blanket. Someone asked, "What's wrong with her?", and my mom said, "Oh, she just has cramps." That had to be about 25 years ago now, but I remember it like it was yesterday.
Posted 9/8/2015 3:38 PM (GMT 0)
I'm so sorry that you went through that as well, Nosila. It's really hard on a kid when their parents don't believe the amount of pain and dysfunction they have with their body.

My mom must have thought I was extremely dramatic, as I would actually pass out in the hallways in high school, and had a ton of "childhood illnesses" - enough to almost not move on to the next grade twice in elementary school. Even my doctors I had while growing up would tease me about being such a hard case, and being so different - but no one stopped to ask why, until I did finally at the age of 37, as I was tired of living that way and then someone said the words "Lyme disease" to me.
Posted 9/11/2015 3:03 AM (GMT 0)
Thought I would chime in here. My baby is 16 so it's not quite the same.

I was exposed at around 16. At least that's when I started symptoms which were excruciatingly painful head aches.

I was the generation of kids that grew up in CT and left for college just before Lyme was given a name and definitely wasn't there when it was discovered that it was transmitted through tick bites.

So I went through 2 pregnancies with full blown symptoms. Both my kids were sick as kids. Chronic ear infections followed by chronic strep, then nothing. No colds, no flu.

Nothing for my oldest until she went to college and then she was like any adult with colds and stomach bugs, etc. When she was 10 months old the ear infections started. Eventually she was put on antibiotics full time for more than 2 years then she was switched to Rifampin for the strep. She is not symptomatic, not even a headache. She did have thyroid issues during puberty but her pediatrician caught it and she grew to a good height given her genetics. She doesn't take meds now, but she's 23 and doesn't listen.

My son is a different story. He also had ear infections but eventually they went with tubes. Two sets. Strep was off and on. He never took abx for more than 4 weeks at a time. Now I see the symptoms. Bad headaches. Insomnia. muscle pain. Rages. Panic attacks.

He was born at 10# 2oz. 90% for height, weight and head circumfirance. (Sigh, today is not my spelling day). But eventually dropped to below zero on the growth chart. It was determined that he had low growth hormone and a bunch of years and many shots later, he is in the average band for a 16 year old.

When it was suggested that I might have Lyme, I stumbled on Pirouette in a different online forum and asked lots of questions. I was still in the investigation phase of things. She made suggestions and I got on here asking lots of questions. I posted a topic asking about passing it on to your baby during pregnancy and I got some responses describing symptoms found in kids. I think rowingmom was one of the people who responded but if you are curious you could search gkamom and pregnancy to find the posts.

I read the responses and was like "oh my god, what did I do to my child." I showed my husband who is the doubting Thomas. He had the same reaction. The thing that jumped out was rages.

This answer to that is I didn't do anything knowingly and what I needed to do was find out if I really had Lyme and how to treat it. Now I know I have Lyme. Just before I got my results, I talked to his pediatrician. She agreed that if I tested positive, he should be tested. So right now he is taking Olive Leaf Extract and we have a signed order. In another week, we'll do the blood draw and wait.

So the rages. I thought it was just being a 3 year old. We even saw a psychologist and her advice was to put him in a room with everything removed that could hurt him. It's terrible position as a parent. I had to sit outside the room and wait for the rage to subside. It was the most terrible thing I have had as a parent. I had to wait until he begged me to come out. That was the sign the rage had subsided.

So the symptoms seemed to have subsided with the use of the growth hormone. I thought that it boosted his immune system and he was able to fight it off. I was wrong. That became clear when one day he had a sudden rage and for the first time I was afraid he would hurt me physically. When he was 3 he was able to hurt me but he was small enough for me to pick up in way to prevent most of the damage. Head butting and biting were the worst. But at 15 he was 6 inches taller than me and definitely could hurt me. He would never do it intentionally, but in a rage you lose control.

For the first time, I saw the rages in myself.

So I would listen to Traveler and Girlie and everyone else. Treat him now. Like Traveler, I was exposed (or began to have symptoms) young (in my teens) and don't want my kids to go through what I went through.

The younger your child is the less work there is to get rid of everything. You are right to be cautious but I would get in touch with some of the veterans who have gone through this with kids. They have lots of experience and like everyone with kids wants to do the best for their kids. We want the best for them which means eliminating this darned disease.

This forum is a very precious resource and you need to dig out everything you can. Caution which results in doing nothing because we don't want "to over medicate" our kids will only give the Lyme and friends more time to entrench themselves.

Add a new post with a title that indicates you are looking for members who have treated their kids. You'll get lots of responses from members who have successfully treated their child. Their experience is invaluable.

One more thing about symptoms is that it starts with completely none specific symptoms - Adult, teen and child.
Posted 9/11/2015 11:53 AM (GMT 0)

gkamom said...
One more thing about symptoms is that it starts with completely none specific symptoms - Adult, teen and child.

While I don't knowingly have a child with Lyme, I can attest to the fact that it most definitely can start with completely non-specific symptoms.

In fact, if I didn't investigate that tiny red pimple on my abdomen last year, I don't know where I'd be right now except for slowly getting worse and not knowing why.

I had NO symptoms after the tick bite. and I didn't develop the EM rash.

I'd just learned enough about Lyme to know to ask my doctor to start me on antibiotics. I developed a stiff neck the 2nd day on the antibiotics but it ended as quickly as it came.

I hadn't learned enough about Lyme to know to ask my doctor to prescribe more antibiotics for a longer duration since I developed that symptom.

It was only because I developed a weird, neurological-type feeling in one toe....and a sense of edema in my lower legs.....that I decided to see a LLMD.

My signature tells the rest of my story....and I am still battling Lyme and possibly a co-infection over one year later.
Posted 9/11/2015 1:51 PM (GMT 0)
that's my biggest fear and concern,I have a 5 years old daughter,Im scared she got lyme from me,so far,she doesn't have any symptoms yet,should I give her a blood test ?? and now Im trying to get pregnant for second child,really scared it will pass to the baby...any suggestions?thanks.
Posted 9/11/2015 2:28 PM (GMT 0)
If you believe you were infected before your daughter was born, it would be a good idea to have her tested. Symptoms in kids often show up differently than they do in adults, making it harder for us to recognize.

Unless having another child is "now or never", I would suggest waiting to heal a little more until you try for another. Both Lyme and pregnancy are hard on your body! I didn't know I had Lyme until I tried for another baby and had a couple of miscarriages. After each pregnancy, I became sicker and sicker. My body just couldn't handle it all. But others have had different experiences. If you do try for another baby, make sure your OBGYN is on board with your treatment. I remember reading (I think in "The Beginner's Guide to Lyme Disease", but not sure) that if you are on at least two different antibiotics during pregnancy, the odds of passing it to the baby are very low.
Posted 9/11/2015 4:02 PM (GMT 0)
Here is a good site to help you determine if your child is showing signs of Lyme: www.childrenslymenetwork.org/children-lyme/lyme-disease-symptoms/

I had all the signs of Lyme as a kid, but no one knew what they were back then. So I ended up with a 40 yr old infection that needed treatment and it stopped me from going to college, having a career (and even working!!!) and so much more. As someone that has lived through that, it simply isn't worth not treating if there is suspicion of a tick-borne infection.

And I agree with Nosila - unless it's a "now or never" situation on having children, it's best to wait. I was very lucky and very blessed for my 2 children to not only to have survived (after 3 failed pregnancies), but to not have these infections - but I still watch over them today and they are 29 & 31 yrs old!!
Posted 9/11/2015 4:44 PM (GMT 0)
hi - I have some thoughts as my kids all had lyme, including my three year old, but could you please answer girlie's questions first? thanks!!!

"What prompted you to test him..if he doesnt have symptoms?"

"Did you have LD (symptoms) when you were pregnant with him?"

vickylovegod - if you are concerned, just do igenex, I believe it is worth the $ for peace of mind and for diagnosis if that's the case!!! I am currently doing a retest for my oldest daughter - no clear symptoms at all, but im going with my mommy instinct!!!
Posted 9/11/2015 5:41 PM (GMT 0)
Traveler :
I'm glad both of your kids doing good, did you realize you have Lyme when you got pregnant them? Do you breastfeed them?

If I want to order igenex test? Do I only need test for Lyme only?
Posted 9/11/2015 5:55 PM (GMT 0)
In my opinion, you could just test for lyme. The co-infections tests are even more unreliable/inaccurate.

Many of us just test for Lyme - as we want to use our money for treatment and are often not working and are struggling financially.
If I had a ton of cash, I would test for co's, but I don't.
Posted 9/11/2015 6:18 PM (GMT 0)
Yes, I'm a stay home mom and my husband needs to pay all of these, he keeps thinking I'm over reacting and thinks Lyme is not a big deal even has it ...!!!!
Posted 9/11/2015 11:08 PM (GMT 0)
This thread is so speaking my thoughts and language!

I'm 40, just diagnosed 3 months ago but suspect in hindsight that I've had it all my life, with the onset of the weird symptoms starting in highschool. Had one episode of migrating but full body paralysis over the course of an hour which led to Bells Palsy and a migraine. This all passed within one evening but no one (not even Drs at Boston Children's Hospital) knew what it was. Said I had food allergies?!? Never really happened again but IBS symptoms and other small unrelated things happened, including depression hitting hard in my 20's. Been on Zoloft every since. It wasn't until my husband recently got completely fed up with my fatigue and lack of libido that I sought a Dr who could help me sort things out...I was not thinking Lyme AT ALL - she was helping me with hormone and adrenal issues which I thought stemmed from gluten sensitivity and my MTHRF mutuation. But when I went to see her one day after a weird panic attack, she dug more into my history and decided to test for Lyme. Also got some Bartonella.

Back up 11 years and I had my first son...fine pregnancy (felt better pregnant) and nothing significant to note with his health - was a happy, healthy infant - breastfed. Extremely bright young boy who is excelling in school. Just entered 6th grade and now anxiety is setting in...is it him or the pressure? He is so dramatic about everything and cries at the drop of a hat.

2006 early miscarriage

My second son was born (emergency C-section) back in 2007. He was a good baby for days 1-14 of his life then the colic set in...and didn't leave for 18 months. I had to sleep sitting up with him. I didn't know babies could cry that loud or long or hard. Nothing comforted him except breastfeeding - he NEVER would accept a bottle. But Drs had no clue...I alter my diet but didn't help significantly. Thank God he is not a happy go lucky kid and as a result has a high pain tolerance. He had some speech delays but nothing major. However, he is really small for his age; he looks and sounds like a 4 or 5 year old but he's 8. He is the pickiest eater in the world; its more like a phobia. He has made strides recently but he's addicted to gluten, dairy and sugar! A year ago we found a bullseye rash on my younger son (never saw a tick) and he was treated with 3 weeks amoxycillan. I don't recall anything significant after that.

When I got my Lyme results, I had them both tested. I thought my young sons results would be clear but he tested Igenex IND and CDC Negative. However my older son tested Positive for Igenex and CDC!

So now when I look back, I see symptoms that I thought nothing of before...
Groin pain
Abdominal pain (like constipation type but he would be major dramatic about intensity of it) I'd give him Mirolax and it would seem to subside.
Allergies (on Claritin and Flonase)
Pimply rashes on legs (the pimples had a weird "white wick" in them)
Allergy shiners on younger sons eyes
Aches in legs (but they are active and play hockey so I expected that)
Dry cough
Forgetfulness (my older son is so bright, I thought of him as the absent minded professor); assumed some of that was just boy behavior.
Talks so much and can't control his ability to stop talking (younger son)...but complete the thought to the point that it is sort of impulsive in nature.

And then, like Vickylovegod, my husband sees only the expense of treatment and thinks I'm nuts for blaming everything on Lyme. He argues why treat if they are asymptomatic but the reason I wrote this is to tell myself (and get confirmation from others) that they are not asymptomatic!

I would love to know from Nosila about the herbs used with your son. You had spelled out some of them in this thread. My Dr has me on Cowden and although I hate the cost, I like that everything is all spelled out for me to follow. I don't know how to go about doing any other herbs on my own for my kids without clear directions. Any suggestions would be fantastic.

Thank you all for this forum; so good to know I'm not alone.
Posted 9/11/2015 11:46 PM (GMT 0)
Why to treat? To prevent your children from going through what I lived through (barely). Just read my posts in this link: www.healingwell.com/community/default.aspx?f=30&m=2977364

It's my journey (very condensed) and why no child should go without treatment if any of these infections is even suspected. The link is in my signature line on every post.


"Traveler :
I'm glad both of your kids doing good, did you realize you have Lyme when you got pregnant them? Do you breastfeed them?

If I want to order igenex test? Do I only need test for Lyme only?"

No, I had no clue I had these infections at the time. I knew that I wasn't very healthy, but never once thought it had anything to do with the ticks and bug bites I had gotten my whole life. I grew up on the West Coast in the early 70's, so none of this was on anyone's radar. But that doesn't stop me from recommending that everyone that has reason to suspect these infections get treatment and not wait. My story should scare people!!

Yep!! I did breast feed my kids, without knowing what I was exposing them to, of course I was just happy to still be alive after the horrendous pregnancies and births that I had. As I said, I was pretty sick and so I had complications. After the birth of my son (2nd child), my OB/GYN told me I had a 40% chance of surviving the next pregnancy and he recommended that I at least get my tubes tied. Two years later, I was having a hysterectomy because things kept going wrong with my female parts (prolapse was the last straw).

Many people only opt for Lyme testing simply because the co-infection testing is less accurate than the Lyme testing, and that's barely "iffy". Most good LLMD's will diagnose by symptoms (clinically) anyway.

For possible help in paying for testing, see Lyme Tap: www.lymetap.com/

And no, Smcal - you are definitely NOT alone!! Not any more!
Posted 9/12/2015 2:10 AM (GMT 0)
Like Traveler and Nosila, I've been sick for a long time.

I'm new to this party, but once it came on the radar I kept digging in and it was like reading the story of my life.

I made a slight misstatement when I said two pregnancies with full blown symptoms. Full blown before and after. I hated being pregnant, but I didn't have any symptoms during my pregnancies other than bad allergic reactions. I was pain free for 9 months excluding labor. I remember the strange looks I got when we did the second kid labor class. They asked us to put rate our pain from the first labor on a chart. I was the last one and I looked at all the other answers and mine was in the top 90%. They all thought I was exaggerating.

With my oldest, at one point they put a monitor on me to chart my contractions. I was having minute long contractions that were about 30 seconds apart. I would have 7 or eight in a row with time between them. So it ended up being 7 minute contractions then a few minutes then another 7 minutes. It was bizzarre.

Other than it taking 18 months to get pregnant with my son, everything was normal. It's very possible that I had been pregnant and miscarried, but there would have been no way to know. With my daughter, we sat down and did the budget and decided we could afford daycare. I went off the pill and 11 days later had to run to the bathroom after one whiff of the chinese food in the work cafeteria. Took three more weeks to test positive (this was before home pregnancy tests), but I was unable to go near the cafeteria for 8 more months.

I nursed both kids. My daughter was 7 months old before we ran out of frozen milk. My son only about 4 months.

We all have non specific symptoms and eventually most of us were diagnosed with something based on a constellation of symptoms.

After having been sick for so many years, literally 35+, I don't want my kids going through the same thing I did. It's not just about what they miss being sick, but also what we as parents miss being sick while they are growing up. It effects them too. They start giving up things because Mom is too sick to go to soccer practice or sit through a dance recital or whatever.

Testing for Lyme tells us we are on the right track. I doubt that you'll find a single person on this forum with "only" Lyme. The co-infections come with the territory. Treat the Lyme and then move on to the next most obvious thing based on symptoms. Lyme is largely a clinical diagnosis until we get better more accurate tests.

Use the money to get your kids tested. Treat them while they are too young to feel different from the other kids and to miss out on being a kid. I remember having growing pains as a kid and then when my son was old enough to crawl into my bed and say "my legs hurt more than usual". He was only 4 or 5 years old. At the time, my diagnosis was Fibromyalgia (still is).

So even though my first recollection of symptoms was headaches in high school, who knows how long Lyme was around before it reached the point that enough kids were sick for people to notice.

Colic and picky eaters. I don't know if there is a connection but my son and I would both go hungry for days before eating something that doesn't look or smell right. My daughter started screaming at two weeks and didn't stop for 10 more weeks. She would start at 5pm and not stop until at least 10pm. She would only stop when we would carry her walking UPstairs so 50% of the time she screamed bloody murder Everyone would say oh, just put the car seat on a running dryer. NOT. My husband went on a business trip when I was home on maternity leave so I drove to my parents so at least I could get a hot meal during the week he was gone. I warned my mother that I had to be "home" by 5pm and she didn't listen. We got in the car and 30 minutes later, with screaming that would make your ears bleed, she turned to me and said "you could drive her around all day and she won't stop. I believe you now."

I feel for anyone going through that. I am so glad my kids are 23 and 16. I would rather have to drive in the car with a teenager or worry about my daughter on a date than colic.

Hope everyone has a good day.
Kim
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