posted
Interesting appointment with my daughter's pediatrician today. I suppose I am not surprised. Very hostile when the topic of Lyme came up. A lot of attitude, condescending.
Told me that kids do not (or almost never) present with neuro symptoms with Lyme. Is this true?
Also said kids present with the bullseye rash 90+% of the time? Really?
Honestly, I do not know a lot about kids and Lyme. Perhaps you all can clue me in - is it really that different for an 11 year old as far as symptoms.
Doc would NOT sign off on an IGeneX test because he's never heard of the lab. Has to call another doctor he knows (rheumatologist) to make sure IGeneX is reputable. Huh? Will get back to me tomorrow.
Said if IGeneX tests for more bands than is standard he wouldn't know how to interpret the results...blah blah blah.
Regardless, he said even with a positive Lyme test by whatever lab, he wouldn't necessarily treat, or know how to treat Lyme. How long, how much meds, etc. Oh my.
He actually came out and said that some kids get the "flu" symptoms from Lyme, get over it and they're fine. I said "well what happens if they didn't get treated for the Lyme at all, they're fine"?? He said yes. So I think he truly believes that you can get Lyme and just get over it on your own, especially if you didn't have the rash.
My 11 year old daughter has had the following lately so I felt an IGeneX test is in order (even though I never saw a tick): - frequent headaches - not super bad, but frequent - several incidences of left big toe feeling numb for a few minutes - several incidences of her right hand feeling weak, like she can't grip a pencil -lightheadedness, often with a quick bout of dizziness - this morning she woke up lightheaded in bed, had to crawl to my room because she felt she couldn't stand up. It passed, she ate breakfast and went to school. - recently a burning stomach a few times
She had a Western Blot by Quest in March I think (I had some concerns even back then) and was positive IgG/IgM for Band 41 only. Not enough to say anything for sure.
No symptoms are extreme, everything comes and goes, most things just last a few minutes (although headaches for hours). I'm hypersensitive, of course, when it comes to neuro symptoms so I've been listening to her carefully just in case.
Hate to cry wolf with Lyme all the time but we do live in Connecticut. Never saw a tick on her (except when she was maybe 3, it was a nymph).
She had a nasty cold (?) first week of April, with a fever. She was pretty sick. Reminded me of my "flu" a year ago in March which I believe was Lyme. Took her 2 weeks to recover. She also had a bad sinus infection early March. I guess I feel like she's been a bit "sickly" the last few months. Generally a very healthy kid.
Anyway, ped. is insisting she see both a neurologist and rheumatologist. I said I wanted the IGeneX Western Blot FIRST. He disagrees, thinks we should see the other docs before the bloodwork.
I just feel unarmed without the IGeneX results - if she's clean on a Western Blot then I can be more open to focus on other things.
All I really wanted today was to walk out of there with a signed IGeneX form. Didn't need the attitude. And I didn't expect to not get the form signed.
~Webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I don't know how that's possible if many kids who are diagnosed with autism actually end up having lyme. Isn't that a huge neuro sign right there?
I wouldn't listen to the things a duck says, especially if he's being condescending and angry. And I believe he's wrong about the rash as well. I don't think it's 90% for anyone or ever!!! It's less than 30% of all people get a rash.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Your ped is flat out wrong!
I'm in the middle of reading Cure Unknown by Pamela Weintraub and there is child after child in there who developed neuro symptoms while the doctors turned their heads.
It's really awful!
I would suggest you post in seeking a doctor for a llmd who treats children her age. Of course, there's always the famous Dr. J.
I agree with you that a W.B. is in order. Don't bother with the rheumy or neuro. They will be as clueless as the ped!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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adamm
Unregistered
posted
What a schmuck! He's told you nothing but the
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Find an LLMD quick. This doctor has no idea what he's doing... He even admitted he wouldn't know how to treat and for how long.
In my opinion, band 41 means a lot more than some people give it credit for.
I only ever got band 41 positive (even from IgeneX). But went on to get a positive Bart and a reaction from Babesia combo.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Your daughter's symptoms (with her history) certainly do warrant an evaluation by a LLMD. Accept no less.
The near-fainting, dizzy spell itself speaks volumes, not to mention the headaches. (And, that said be sure she consumes no aspartame/nutrasweet/Equal - or MSG - for they can complicate symptoms, even in small amounts.)
Do not waste time on the other doctors suggested. they will not consider lyme (unless you search out a LLMD/neuro or LLMD rheumatologist). As you know, if this is infectious based, time is of the essence.
If you are paying out of pocket anyway, a ND can order the tests and you can go to any lab for the draw (with specific instructions from the diagnostic lab regarding how drawing is done/shippped).
Still, though, if you can get to an LLMD from the start, that would be good.
Also, know that a Western Blot is not the end-all, be-all. I would feel best if a LLMD could do a clinical evaluation and s/he can order appropriate tests. There may be other TBD tests that are just as important.
So, as to that doctor's comment about children usually having the rash: wrong - the chance of a rash presentation is the same, regardless of age. And, by now, class, we all know that not everyone gets the rash. (Guess your doctor missed that in class. But, oh . . . I forgot: doctors don't learn the truth about lyme in medical school.)
And, as for that doctor's comment that children with lyme don't have neurological symptoms (and he fails to consider other TBD), this is just a start:
encephalitis - means infection, inflammation, in the brain. [see next post for clarification.]
PubMed Search:
lyme encephalitis - 389 abstracts
lyme encephalitis, child - 72
lyme encephalitis, children - 74
neuroborreliosis, children - 165
neuroborreliosis, child - 155
ehrlichia, child - 85
Careful, however, in that a lumbar puncture (spinal tap) might be suggested to check cerebral spinal fluid (CSF). In lyme, there is a very slight chance of this test being of help. It can be painful, expensive and have unpleasant effects for up to a week afterward. However, if this is done (say to rule out other dangerous brain infections) there is a particular sized needed and methods to help decrease side-effects.
======== ========
Two fatalities from Ehrlichiosis in Missouri 2007 summer.
By mid-August, Missouri had received reports of 117 cases of Ehrlichiosis . . .
Two articles below from a St. Louis Television site. The newpaper articles are in archives - viewable only with purchase.
As mentioned before, there is a unique strain of another TBD in Missouri- Babesia MO1, as CaliforniaLyme mentioned.
ALSO - if by chance you have no spleen (removed from injuries, etc.) you absolutely MUST be tested and worked-up for all possibility of any strain of babesia as it can be fatal in those who have no spleen.
======================================
Sorry, the links are no longer working. However, with that original link, you may be able to pay a small fee to the site for the archived article. These accounts may also have been reported elsewhere. I had saved these excerpts to my file last summer when I saw them.
The AP (Associated Press) might be another site from which to obtain the articles - and others.
Missouri Child Dies From Tick-Borne Disease created: 6/6/2007 11:45:04 AM updated: 6/6/2007 6:54:44 PM
ST. LOUIS (AP) -- Health officials are warning Missourians to guard against tick bites, after the death of a child who was bitten by one of the insects in northeast Missouri.
The child became ill after being bitten by a tick and died May 23 after ten days of intensive medical care.
The state health department reports a rise this year in tick-borne diseases such as ehrlichiosis and Rocky Mountain spotted fever. Other such diseases reported in Missouri this year include tularemia and Lyme-like disease.
Tests at St. Louis Children's Hospital show the child was infected with a disease related to Rocky Mountain spotted fever.
The state epidemiologist warns that tick-borne diseases can be fatal, and that diagnosis can be difficult.
(Copyright 2007 by The Associated Press. All Rights Reserved.)
Central Missouri Teen Dies From Tick Disease created: 8/30/2007 11:13:23 AM updated: 8/30/2007 11:14:51 PM
CENTRALIA, Mo. (AP) -- Authorities say a Centralia girl has died of a tick-borne disease.
The Boone County Medical Examiner's Office says Emily Powell, 15, died Wednesday from Erlichiosis, a disease acquired from ticks. The girl was hospitalized Monday.
Extra counselors are available at Centralia schools today to help students cope with the loss of a classmate.
Tick-borne diseases are being reported in Missouri this year at a rate far higher than the five-year average.
By mid-August, the state had received reports of 117 cases of Ehrlichiosis, compared to the annual average of 40. Higher-than usual rates of Rocky Mountain spotted fever, tularemia and Lyme disease are also being reported.
Officials recommend avoiding wooded and bushy areas with tall grass, wearing long pants and long sleeves and using insect repellants that contain 20 percent to 50 percent DEET.
(Copyright 2007 by The Associated Press. All Rights Reserved.)
AP/KSDK
===
And, as always, ILADS' articles and presentations can illuminate: www.ilads.org
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[ 10. June 2008, 06:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Encephalitis is an acute inflammation of the brain, commonly caused by a viral infection.
It can be caused by a bacterial infection such as bacterial meningitis spreading directly to the brain (primary encephalitis), or may be a complication of a current infectious disease like rabies or syphilis (secondary encephalitis).
Certain parasitic or protozoal infestations, such as toxoplasmosis, malaria, or primary amoebic meningoencephalitis, can also cause encephalitis in people with compromised immune systems.
Lyme disease may also cause encephalitis.
Bartonella henselae can also lead to this. Brain damage occurs as the inflamed brain pushes against the skull, and can lead to death.
Symptoms:
Patients with encephalitis suffer from fever, headache and photophobia [light sensitivity] with weakness and seizures also common.
Less commonly, stiffness of the neck can occur with rare cases of patients also suffering from stiffness of the limbs, slowness in movement and clumsiness depending on which specific part of the brain is involved.
The symptoms of encephalitis are caused by the brain's defense mechanisms activating to get rid of the infection. . . .
Diagnosis:
. . . Examination of the cerebrospinal fluid obtained by a lumbar puncture procedure usually reveals increased amounts of protein and white blood cells with normal glucose, thoughin a significant percentage of patients, the cerebrospinal fluid may be normal.
CT scan often is not helpful . . . .
. . . Herpes simplex encephalitis is caused by the herpes simplex virus . . . .
. . . In a small number of cases, called limbic encephalitis, the pathogens responsible for encephalitis attack primarily the limbic system (a collection of structures at the base of the brain responsible for basic autonomic functions). . . .
Journal of Clinical Microbiology, December 2006, p. 4407-4413, Vol. 44, No. 12 0095-1137/06/$08.00+0 doi:10.1128/JCM.01077-06
Copyright � 2006, American Society for Microbiology. All Rights Reserved.
Borrelia burgdorferi Genetic Markers and Disseminated Disease in Patients with Early Lyme Disease
EXCERPT:
Definition of disseminated disease.
In an early treatment study, carried out before practical laboratory markers of dissemination had been developed, disseminated disease was defined by a combination of clinical signs and symptoms (20).
It was later shown that multiple symptoms, particularly the combination of headache, arthralgia, myalgia, and fever, were associated with PCR evidence of B. burgdorferi in blood (9).
In this report, disseminated disease was defined by
* the laboratory marker of a positive PCR test for B. burgdorferi DNA in blood
* or by the clinical markers of multiple EM lesions
* or the combination of at least six of eight specific symptoms (headache, neck stiffness, fever, chills, myalgias, arthralgias, malaise, and fatigue), -- including the four that were previously shown to be associated with disseminated disease.
. . . As previously noted (27, 37), we found that some B. burgdorferi strains were more often associated with clinical or laboratory evidence of dissemination than others.
posted
My dd presented with major neuro issues: depression, suicidal tendencies, bi-polar disorder, anorexia . . .
And that was in a THREE YEAR OLD KID!!!!! She had lyme and babs. For 18 months every face she drew had a frown, within 10 days of tx every face had a smile.
Get a good llmd to check her. Some kids do kick it. My son was infected at 5 years old, he had a huge migrans rash, was treated with 6 weeks amox and he was totally resolved. Honestly, it seemed like he kicked it on his own before the amox, but we wanted to be sure.
He's had several more tick bites. Now we've taken him to Dr. J. He does show a positive western blot for past exposure. Dr. J recommended not treating because he had no active symptoms.
I say go with your gut. You know if she's not quite right. PUsh for what testing you need!
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
[QUOTE]Originally posted by webmeg: [QB] Also said kids present with the bullseye rash 90+% of the time? Really? "
* - I was 10 when i got sick and to this day i never had a bullseye.
"Doc would NOT sign off on an IGeneX test because he's never heard of the lab. Has to call another doctor he knows (rheumatologist) to make sure IGeneX is reputable. Huh? Will get back to me tomorrow.
Said if IGeneX tests for more bands than is standard he wouldn't know how to interpret the results...blah blah blah.
Regardless, he said even with a positive Lyme test by whatever lab, he wouldn't necessarily treat, or know how to treat Lyme. How long, how much meds, etc. Oh my. "
You need to find a lyme literate dr for your daughter. They are the best ones to rule it in or out and if she has it you definetely want someone who knows about lyme and coinfections treating it.
"He actually came out and said that some kids get the "flu" symptoms from Lyme, get over it and they're fine. I said "well what happens if they didn't get treated for the Lyme at all, they're fine"?? He said yes. So I think he truly believes that you can get Lyme and just get over it on your own, especially if you didn't have the rash."
* - Like I said I got sick at 10 with no rash. Wasnt diagnosed with lyme until i was 23 and i am now 31 and relatively recently past year or so-ish found out i also have babs. I have not only been sick all this time but by the time i was diagnosed i was disabled ... and I still am. "
* - Sorry you have to deal with unccoperative drs. You would think they wouldnt have such an issue with ordering a test. If you cant find a llmd can you find a lyme friendly dr that will order the test? If you want you can post in seeking a dr maybe someone has info on a dr.
My son had disienes .Wish I knew before , now has white matters and active full blown neurolyme and 4 coinfections.I will never forget the girl 12 years old that was bit when she was 2 years old and was given only 2 weeks of antibiotics .I meet her at Dr J office .
She was in IV for 4 years and was mostly in bed for years as no body was beiliving her when she used to say I am disy until she start getting NUMB and could not say the worlds.
Was scary as she exspalined to me how she felt all these years.IT WAS HORRIBLE -her parent neglected her thinking she wants attention.
WHat are you going to do when you see your child end up like ?
Send your child to DR J as you are very close to him.We travel to get to him.
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your pediatrician admitted to you that he would not be able to interpret the results
you sound knowledgeable about lyme, are you a lymie yourself
if so then you know that your child needs a llmd and fast
some of the neuro symptoms my children had:
migraines dizziness loss of vision numbness tingling shin pain and pain along nerve paths ear pain jaw pain loss of concentration unable to sleep nightmares and terrors rage mood swings
your pediatrician, unfortunately, is the norm and not the exception
wishing you and your child luck
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Yes, I'm a neuro Lymie, too, and I know a lot about it. But I really haven't studied it regarding kids. All the input was helpful.
I know I'll need another doc for her for sure, someone Lyme friendly at a minimum. I was just very surprised I couldn't get a simple IGeneX form signed.
I feel with an IGeneX test I (might) know better what could be happening. Hate to spend several thousand on Dr J and not know what I'm potentially dealing with first.
Current ped's office is still giving me a hard time - pushing to make appointments for me with a neuro and rheumatologist. I really feel like they're just trying to fill appointments for the other docs. What's up with that, is he getting a $$ kickback? I said I will see someone else AFTER I get the IGeneX test done. Of course he's ticked about that.
I'll continue to fight the good fight and be an advocate for my daughter. Will post in Seeking Doc's for lyme friendly docs in CT. PM me if you happen to know anyone (other than Dr J).
Thanks so much,
webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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posted
OH by the way if they do refer to you a LYME EXPERT in CT they will send you to CCMC & Dr Eugene Shapero- MR IDSA, author of the guidellnes that the AG found corruption with and and there is no such thing as chronic Lyme.
He will attempt spinal taps of your kids, to further disprove Lyme DX and torture you and your children. Run from this man.
Have been there, done that before we learned how bad Lyme is.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
Back again-- because this really makes me mad when children can not get properly checked out in CT.
Ticks carry 5-6 parasitic infections that are equal to or worse than Lyme. You can get one or more of these--- even if you dont get Lyme from a tick bite.
Since there are So many ticks in CT, it is as common as a mosquito or flea bite-- again which there is even controvery and no facts/for or against if these can spread these same diseases.
Do you by chance have the referance to the stats above? How big was the sample size? Did they sample 10 ticks or thousands?
Good info, Thanks
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Just got off the phone with my daugther's pediatrician.
Flat out NO to signing off on an IGeneX test. NO NO NO.
He consulted with Dr Z in Hartford (I know, I know - I've been clued in on that guy) and Dr Z feels IGeneX has a higher positive rate than is normal. Quest or LabCorp are much more reliable.
I'm so upset. I knew I needed to find another doctor for her, but I really didn't want to delay getting her tested - thought I could get that done asap and while waiting for the results find someone else.
I cannot believe he refused to sign the form. We live in Connecticut for goodness sake!!!!!!!!!
~webmeg Posts: 257 | From Connecticut | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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A naturopathic physician can order blood tests. Payment would be out of pocket, though, for the ND appointment, lab draw and testing - unless your insurance might cover some alternative consults.
My neurotologist told me to get tested (in '97), but my PCP did the wrong test. The only way I could get Western Blot tests done was through an ND sending it to Igenex (and pay out of pocket) (which had 3 positive TBDs). Too bad that no doctor would treat in my state, however.
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[ 12. June 2008, 11:27 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My 14 yr old daughter contracted lyme (& other co-infections) when she was 5 1/2 yrs old. Got into a nest of nymph ticks and had about 10 of them embedded in her legs (so did my son-he was 6 1/2 yrs old).
I gave them baths, but didn't see them until the next day after a redness appeared around the black dot.
My daughter's symptoms were 90% neuro while my son's were only about 20% neuro. She developed learning problems, personality problems, numbness/tingling in her hands and feet, headaches, heart racing out of control, and most of the other neuro symptoms.
She even had a seizure, took her to hospital. By the time I got there she was over it and didn't have another. It was a famous hospital for children and all they did was hold her 4 hours and did an EKG!
Told me it wasn't a seizure. Anyway, she would get rashes, but not bullseye rashes. Her rashes would appear suddenly, mostly on her trunk, legs, and arms, then after about 30 minutes disappear!
My son NEVER got a rash, but developed learning problems as well. Fortunatley, after 6 months of oral antibiotics, his learning problems disappeared.
He's still on antibiotics and when he stops, he can't remember anything and can't learn. It is scary.
My daughter is still very sick and her neuro lyme has only gotten worse. She had a SPECT scan come back abnormal in 2007, has developed Obsessive Compulsive Disorder, Severe Depression, is suicidal, cut herself, has rages and terrible mood swings, and most recently bipolar disorder.
She can't remember new things, so school is terrible, she can't understand directions, she can't comprehend what she reads, she gets easily confused, etc.
It took me years to get anyone to listen to me...(all the while her lyme was getting worse). I was mocked and laughed at for even suggesting lyme by numerous pediatricians.
They took her childhood away by not listening and not helping. It is very frustrating. She had IV once for 56 days and improved immensely. After they pulled the line, she crashed. And things continue to get worse.
Finally hoping to get her back on IV in August, but must pay out of pocket for it as the insurance will not pay because she doesn't have a positive lyme test.
If you suspect your daughter could have lyme, find a lyme literate doc ASAP, for her sake. Don't waste time putting her through unnecessary tests by rheumatologists or infectious disease docs either.
From what I've learned by constant research for the past 9 years is that children are more susceptible to neuro lyme and psychiatrists are just beginning to recognize this.
In fact, her psychiatrist is more intelligent about lyme than of the docs she's been to yet when it comes to neuro symptoms.
Don't put up with the belittling from your doc, find a new one quickly. He is in total denial regarding lyme. Good luck!
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