Wouldn't I know is my ds had been bitten?

[1tiredmama]

We live in a wooded, deer tick infested area with a high rate of Lyme. I suspect ds has been ill for many years with PANS. Just starting to investigate. Some folks recommend I consider Lyme. Here's my question:

 

Wouldn't I have spotted the bulls-eye rash on my fair, blonde-haired, blue-eyed child? Wouldn't I have felt swollen lymph nodes somewhere on my son's body when I bathed him? I remember, years ago, finding multiple "knots" on the back of his sister's head. I called the pediatrician and found out that they were lymph nodes reacting to a harmless insect bite. So, wouldn't I have noticed something if ds contracted Lyme?

 

Thank you for your thoughts.

Edited March 11, 2012 by 1tiredmama

[LNN]

Many, many people who have lyme don't recall a bite and it's said that the number of people who develop and EM rash could be as low as 40%.

 

Here's an overview from ILADS: http://www.ilads.org/lyme_research/lyme_articles6.html

 

Remember that a deer tick is most likely to transmit lyme in the nymph stage, when it's the size of a poppy seed. Unless it's fully engorged, a deer tick is way smaller than a dog tick. Very very hard to see sometimes. And if your son were bitten on the scalp, it's possible you wouldn't see a rash if there were one.

 

You can drive yourself crazy second guessing, looking backward. I rejected the idea of lyme for my son for a good 6 months or more. But the best way to rule this in or out is to test for it. A standard western blot done thru a regular lab (quest, labcorp) is fairly unreliable. These labs use CDC criteria and intentionally do not look for certain bands of antibodies that are lyme-specific. (long story). So there are two labs the people here have generally used - Igenex, which looks for antibodies like the CDC western blot does, but it includes the specific bands that the CDC guidelines omit. The other lab - Advanced Labs - has recently launched a test that looks for the actual spirochete bacteria in a culture, much like a strep test cultures strep. http://www.researchednutritionals.com/information.cfm?id=255

 

The Igenex test is @ $200 and although you have to pay them out of pocket, they give you the paperwork to submit your own claim for insurance and many of us have gotten reimbursed @ 60-80% of the cost. As I understand it, Advanced Labs is @$600 and is not covered by insurance. But...there's no debate about the result if they find spirochetes. Both labs require a doctor's signature on the req. form.

[KaraM]

Three of us have LYme. I don't recall any of us getting a tick bite...never an EM rash. My daughters were all neuro-psych. She is/has been as healthy as a horse from a physical standpoint. She also has Bartonella.

 

We live in a wooden, deer tick infested area with a high rate of Lyme. I suspect ds has been ill for many years with PANS. Just starting to investigate. Some folks recommend I consider Lyme. Here's my question:

 

Wouldn't I have spotted the bulls-eye rash on my fair, blonde-haired, blue-eyed child? Wouldn't I have felt swollen lymph nodes somewhere on my son's body when I bathed him? I remember, years ago, finding multiple "knots" on the back of his sister's head. I called the pediatrician and found out that they were lymph nodes reacting to a harmless insect bite. So, wouldn't I have noticed something if ds contracted Lyme?

 

Thank you for your thoughts.

[socalmom]

According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections.

 

50% have no known history of deer tick attachments and fewer than 10% have a history of an erythema migrans Lyme rash (bull’s-eye).

[lyme_mom]

According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain and central nervous system infections.

 

50% have no known history of deer tick attachments and fewer than 10% have a history of an erythema migrans Lyme rash (bull’s-eye).

We had no history of tick bites nor rashes and yet we all had lyme. We never even see ticks and we got it.

[SSS]

These thoughts to myself is what helped procrastinate

Lyme testing:

'No way we have Lyme, never been camping, never owned a pet, she's been sheltered...'

It just sounded so far out to me.

And, we are not near deer infested areas- suburan living.

A little voice did nag me about it. And always reading about it

on the pandas board (lol.)

So just finally did a test.

And here we are.

May not be this way for you.

Could just rule it out for peace of mind.

[1tiredmama]

Wow! Thank you all for your thought-provoking responses. Standard tests have all come back negative. Thank you, LLM, for the price quotes. I was afraid we might be looking at something cost-prohibitive, but we can swing $200.

[momcap]

My entire family of 5 all test positive. We live in Canada, and the doctors here don't even know about lyme, saying we don't have lyme here at all. Apparently the ticks don't have passports so they get turned around at the border. Our government health websites warn of lyme, but the doctors haven't got the message yet.

 

I don't recall a tick bite on ANY ONE of us, although I have picked engorged ticks off my barn cat, so I know they are on my deer-infested property. My kids are also blond/fair, so it shouldn't be difficult to spot a tick. I am the only one who had a possible EM rash, but it wasn't the proper bullseye. I got a solid red circle on the side of my knee. It looked like a deep red bruise, but the colour was strange, it was perfectly round, and it didn't hurt, so I thought it was odd. I had spent a couple of hours in grass, catching and crating my pasture chickens before I found this strange circle. A week later I had classic symptoms of acute lyme - very sore throat, BRUTAL non-stop headache, swollen glands, high fever, and feeling like I was looking at the world from far away. I have never felt so sick in my life. I went to the E.R. 3 times begging for help, and was sent home all 3 times. The only thing they tested for was strep (at my insistence) and that was negative. I didn't know anything about lyme at that point. I read about it six months later and requested a test, which came back CDC positive.

 

I'm sure my kids have lyme. I had the oldest tested in Canada, and it came back negative. So I tested them all via IgeneX and they are all positive. I found out the "negative" test from Canada had 4 bands positive, not the required 5. I don't understand the requirements for a positive. Where did those 4 positive bands come from, some of them lyme specific, if it's not lyme disease? THe criteria don't make sense. The oldest has PANDAS, severe psych issues, sensory problems, and all sorts of joint and muscle pains, including sometimes severe joint swelling. The middle one had migraines and chronic congestion that have gone away with lyme treatment. The youngest (now 5) was practically crippled with very low stamina and knee and ankle pains. Now with treatment, he's running circles around us, and acting like a 5 year old should.

[1tiredmama]

Wow, momcap! Your story is amazing! Thank you for taking the time to share it. I stated that my ds tested negative, but actually, he did have some reactive bands. I, too, wonder where those come from.

 

My ds's symptoms sound a lot like your oldest ds's. Add to those a huge drop in cognitive ability and severe, chronic fatigue. We have an appt with Dr. L. in May. I'm hoping she will point us in the right direction.

 

I'm glad you and your children got the help you needed. How is your oldest son doing now?

[1tiredmama]

Wow, momcap! Your story is amazing! Thank you for taking the time to share it. I stated that my ds tested negative, but actually, he did have some reactive bands. I, too, wonder where those come from.

 

My ds's symptoms sound a lot like your oldest ds's. Add to those a huge drop in cognitive ability and severe, chronic fatigue. We have an appt with Dr. L. in May. I'm hoping she will point us in the right direction.

 

I'm glad you and your children got the help you needed. How is your oldest son doing now?

 

 

I just remembered that ds was taking Doxycycline, 100mg twice a day, for acne from August until just a few weeks before his blood draw. Could he have had Lyme, and tested negative due to the antibiotic?

[sf_mom]

How did he do on the Doxy? That in itself might be a clue as to 'if' he had lyme previously. Also persistent acne per our LLMD points to a detox issue... It could be a clue that you need to address methylation/detox no matter the infection.

 

Wishing you all the best. Wendy

Edited March 12, 2012 by SF Mom

[momcap]

 

 

I'm glad you and your children got the help you needed. How is your oldest son doing now?

 

It's a saw-toothed recovery, that's for sure. Overall he is dramatically improved, but not 100%. In the first month his OCD and germaphobia went away! Now he has some stubborn germaphobia that has returned, but nothing as bad as before. He still has some mood lability, but it is manageable. Last year he was attending a juvenile mood disorders clinic, missed 88.5 days of grade 2 (due to rages, manic episodes, and unsafe/unpredictable behaviour), and was scheduled to attend a special classroom for emotionally disturbed children for grade 3. He improved so much he was discharged from the clinic, and went to his regular grade 3 classroom where he caught up academically within 2 months!!! He had previously lost his ability to read and write. He still hates to write, but can do it when absolutely necessary, and he's one of the best readers in his 3/4 split class! Really, I can't believe how much he's improved overall. Vocal tics are 100% gone. No more joint swelling. Pains are infrequent now, usually following a med change, but when they happen they are severe. Usually it affects a knee and he can't or won't walk for several hours. We stopped abx about 6 weeks ago, hoping to run the new borrelia blood culture test, and within a couple of days all symptoms came crashing back. He appeared almost schizo - violent, agitated, self-talking, paranoid. It was terrible. We abandoned the test and got him back on his meds. So he is far from recovered, but the antibiotics are allowing him relief from most symptoms, and the ability to live a mostly normal life.

 

I don't know about doxy changing test results. When we ran the WB I contacted IgeneX and they said they did not have to go off antibiotics for that test. DS had been on a pile of antibiotics already (over a year of prophylaxis for PANDAS, plus several others), and was still on antibiotics when we ran it. His western blot had 5 positive IgM bands, and 4 positive IgG bands. It was a pretty convincing positive test, despite all those abx. Good luck!