posted
I have only been a part of your world for a short time... eleven days to be exact.
I do research in my job on a daily basis, and am quite good at it. So, over the past 11 days, I have pored over every medical journal I can get my hands on that even mentions Lyme, made calls, and read anything I could get my hands on. I have learned more about it than I wanted to know, and no offense to any of you, but I wish we were not part of your club, if ya know what I mean!
On Good Friday, the pediatrician called to tell me that my daughter was positive for Lyme, and mentioned something about her having lots of antibodies so she 'probably had it a long time'.
I thought, good-we finally have a diagnosis. (Until I started reading and realized it isnt so simple as just having a diagnosis and taking some pills to clear it up). The pediatrician is a good guy, but he has ZERO experience with Lyme and readily admits it.
Last Friday, I spoke with my daughter's pediatrician again. He didnt realize that the Lyme Test was a two-parter and had just gotten the Western Blot back. Said it was negative but that he didnt feel it was right to rule out Lyme. I tried to get him to explain the test results to me because I had read what the Western Blot was and hoped it would help me understand. After he explained it to me, I still didnt know what it said. By the time we were half way through our conversation, he said to me "well, your knowledge of Lyme has officially surpassed mine".
Oh, and a side part to the story is that the Health Department called me and said that while they hope my daughter gets better, that they won't be counting her in the statistics that they report because she doesnt meet the criteria. I said don't care.. all I want is her to get better. But after I hung up, I thought.. how many people are getting a false sense of security because our state only had 110 cases last year, which is obviously a false number.
So, today I went over and picked up copies of the test results on paper. Then I went to the Medical Question page on this website and read Dr. C's guide to understanding the Western Blot. And I looked up the one band she tested positive for.
It is:
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
SO... this leads me to the title of my post.
I cannot believe that a person having a band 41 - which states it detected a flagella or tail - is not considered as having Lyme! And I can't believe that the CDC doesn't count these people!
I am just sitting here shaking my head at the irony of it all.
NOW I understand why all you folks call some doctors Ducks.
Posts: 19 | From Chicago | Registered: Mar 2008
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...glad to hear though that her doctor admitted not knowing much.... Im sure some one on this website could direct you to a doctor that knows more about Lyme in your area.....
hope she feels better quickly..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Thanks mtree. I have been given two names from members, so we will probably be looking into making an appointment with one of those, unless I happen to find someone closer.
Posts: 19 | From Chicago | Registered: Mar 2008
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posted
That's because the flagella COULD be from another spirochete....but usually is NOT.
If she doesn't have gum disease, then it's Lyme.
What the pedi said about the antibodies is not really correct.
When someone has had lyme a long time, they are less likely to show a high response on the antibodies because their immune system is shot and can't register a response.
Also, the WB he ran is from an inferior lab, right?? When she gets tested thru Igenex, then you will have more bands to see what is really going on.
The crummy labs do not test for all the possible bands.
posted
Yes, it was some lab in WI that I had never heard of before. And I am sure you are right, a test from Igenix will tell us more.
No known gum disease, but lots of cavities compliments of the osteopenia apparently (had 17 cavities the year her braces came off and we were told that was from the osteopenia). The enamel surfaces of her teeth were literally flaking off.
(Plus gum disease wouldn't cause joint problems, loss of concentration, muscle aches, headaches, etc etc etc. So, I am convinced she has Lyme no matter what the tests say.)
Just out of curiousity, if someone had gum disease and that band came up what does it mean they had? I didn't think there were too many things in the same shape as Lyme.
I am not surprised that what the pedi said was wrong... he didn't even know they were sending her blood out for that second followup test (WB) until the results came back.
Posts: 19 | From Chicago | Registered: Mar 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Just a little note.
Is your doctor going to start your daughter on antibiotics?
If so, just wanted to give you a heads up on Igenex and their antibiotic protocol.
You get antibiotics for 28-30 days, stop for 10, then draw the blood for testing.
Maybe your local doctor can write the order for the testing.
That will get you ahead of the game when going to see a LLMD.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
[QUOTE]Originally posted by misika: (Plus gum disease wouldn't cause joint problems, loss of concentration, muscle aches, headaches, etc etc etc. So, I am convinced she has Lyme no matter what the tests say.) EXACTLY!!
Just out of curiousity, if someone had gum disease and that band came up what does it mean they had? I didn't think there were too many things in the same shape as Lyme. Let me find it. I can't remember, but it's caused by a spirochete.
Spirochetes are the other major type of bacteria that we look for under the microscope. These are corkscrew type, snake-like bacteria. Although there are different types of spirochetes, the one in the mouth is called Treponema Denticola. As an aside, the spirochete called Treponema Pallidum cause syphilis and another type of spirochete called Borellia Burgdorferei causes Lyme disease. All three types of spirochetes are bad guys. But in terms of periodontal microscopic assessment we are concerned when we find the spirochete Treponema Denticola, which has been shown to be associated with periodontal disease."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Hmm, interesting Lymetoo. Thanks for looking that up. And to think, I had never even heard of a spirochete two weeks ago! LOL
Geneal, the pedi did thankfully start my daughter on doxy immediately (same day ELISA results came back) 100mg 2x day so she has been on it for about a week and a half.
It's making her nauseous but I don't know if that is considered 'herxing' or if its just that her stomach is sensitive to the abx.
The good thing is, even though the pedi doesn't know much about Lyme and how to treat it (and its not common in our area), he told me his brother had it and it took the doctor's two years to figure it out.
So, he is definitely open to suggestions, and he realizes how sick it can make a person.
Posts: 19 | From Chicago | Registered: Mar 2008
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I HAVE to take it with a meal.. ...eat some...take it....then eat some..... then don't lie down for at least an hour after taking it........ and lots of water........ when my stomache is empty thats when it hurts....drinking lots of water really helps.....
that's the only way i can take it....
check with your doctor on that though.....
glad she is on something..... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Yes, make sure she is taking it with FOOD!!!
Chicago and IL in general has TONS of Lyme!!! Tons!
It just isn't being diagnosed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
tutu, that was a good article on lyme/teeth. could you copy that to treepatrol's archive in case he doesn't have that good info!
misika, there are 3 spirochettes, and the last one is SARCOIDOSIS; my former co-worker and someone from our fibro/fatigue support group each has this; bad news also.
the best kids llmd in the midwest is in missouri in tutu's area; have you been given his name? *******************************************
don't dink around with others in your area; go with experience AND POSSITIVE RESULTS. 1 Iowa woman was really glad she took her 7 yr. old son there where he was correctly diagnosed and treatments began; she got to meet her son for the first time due to all misdiagnosis he had!
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posted
For those that are taking the doxy with food, I was told by the doctor (and the pharmacist) that she should not eat for an hour before and two hours after. And I was told the reason for this is that the medicine will not get absorbed and will not do it's job?
If she eats two hours before, she gets nauseous. If she doesn't eat for several hours, then takes it...she vomits in 30-40 minutes. But eating exactly one hour before, and then taking it seems to work fine for her. Those days of eating one hour before she hasn't been nauseous.
Do most of the folks on Doxy eat with the pill?
Betty, yes I have been given a WI name and a MO. name. Thanks.
And Betty, you gave me a chuckle, I thought I was the only one who used the phrase "dink around" anymore!
And yes, I am looking forward to spending time with my Pre-Lyme daughter again. Her attitude has already improved just in the last week because she is so happy to finally know WHAT is wrong with her.
Posts: 19 | From Chicago | Registered: Mar 2008
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posted
I don't know of anyone here who doesn't eat when taking Doxy. You just can't get away with that when you're on it long term.
Of course, I can't give you medical advice....just telling you what I've learned here over the past 7 1/2 yrs.
Post the question in Medical and see what others say.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Eeek! I can't believe the advice you received to NOT eat for an hour before and two hours after! Poor baby's belly!
While we would NEVER give medical advice (heaven forbid!!), collective experience here suggests that the above is an invitation to puke yer brains out BIG TIME!
And puking + doxy = bad news for your baby's esophagus.
LymeNet wisdom is this: Eat half a meal. Pause. Take doxy. Continue with remainder of meal. Ensure that meal does not contain dairy.
As you point out, don't lie down.
Be sure and take probiotics a couple hours away from the doxy. Do it now before a problem develops, as it surely will.
Call IGeneX yourself and ask for a test kit..test numbers 188 and 189. They'll send it. The other western blot you did was for the most part meaningless as it omitted two very important bands.
Have your daughter stop her meds for a couple weeks before testing.
Find an LLMD!
It does sound like your doctor is a nice fellow! But so many things call for for an expert, like the possibility of coinfections, etc.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Perhaps your pediatrician would be willing to work with an LLMD to monitor your child's progress, do follow-up tests, and prescribe antibiotics, all of which could save you time and money, AND help educate the another doctor in the treatment of Lyme.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
I totally agree on all the good advice about eating with doxy! For me, a partial meal meant projectile vomiting....so, to counteract that, it was necessary to eat a FULL meal and then take my doxy.
Make sure there is no milk/calcium being eaten, as this makes the doxy null and void.
glad i made you laugh with my DINK AROUND; haven't used it in ages, but grew up in the 50s with it!!
you've been given lots of good advise here; best wishes on caring for your daughter's best interests.
also at the top of medical is a post about prayers for iowa 14 yr. old girl, please click on it and go to alex's caring bridge site to write a brief note to alex/family.
alex has been on a ventilator for 1.5 yrs; can't eat, smile, or talk; her heart stopped 2-3 nights ago.
she's dying; no dr. can figure out WHAT disease she has including lyme/co-infections...
thanks misika! best wishes on yours too!
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
misika, Mom, I'm so sorry you have a sick daughter. I can only image your frustration at the real world you've entered due to your daughter's illness.
If it was only as easy as A+B+C=D. Good luck finding help for your daughter. I know you will want the best for her.
Pam
PS: laughter is good for all, even the ill. It makes things seem not so serious.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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