posted
Over this last weekend my son was at his Grandmas where there is a high concentration of mosquitos, deer flys and ticks. When My husband and I picked him up he had several large what looked like bites on his legs and and chest. Two days later one of the bites on his chest had formed a perfect bullseye rash. I became very concerned as my sister and dad have both had lymes and it is prevalent in my area. I took him that same day to the urgent care and saw a pediatrician. She orderd a blood test and put him on 10 days of amoxicillian for any kind of infection a bite may have caused. The test came back negative, but I do know of false negatives and told the lab tech that I would like him to go on the 21 day round of antibiotic anyways to be safe. She spoke with the doctor who said if he did have it the 10 day round would cure it (not what she said at the visit) and I should watch for any symptoms. My son is 2 years old, it would be very difficult to look for symptoms. I plan on calling the doctor, but I was wondering if 21 days of amoxicillian is effective and also I thought a bullseye rash would be enough to go on the antibiotics. Anyone's help would be appreciated. My dad has arthritis, liver problems, insomnia and a year bout of rhuematoid arthritis when he was 18 (he is now 59) he was diagnosed with lymes 2 years ago I suspect all this was caused by lymes disease and refuse to sit back and wait for my sons to get worse!Thank you.
mitchellar31 Posts: 6 | From Wisconsin | Registered: Jun 2007
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Second... Smart move getting your son on abx right after the bulls eye rash. There is some evidence that if abx are started right away then Lyme can be killed off before it gets too comfortable in the body.
Third... I can't really tell you if a 10 day treatment is as effective as a 21 day treatment. (I'm not a doctor) But according to the CDC it is, but not many of us who live with Lyme actually believe that CDC has a clue about this disease.
My advice... be comfortable that you are doing the right thing by getting him on abx as quickly as you did. Make sure the dose is high enough! Then please find an LLMD in your area and get him to see him ASAP.
Don't listen to the blood test results. The test they gave him is most likely an ELSA test, which is totally worthless. The ONLY test that will give you somewhat of an indication is a western blot... and it should be done by Igenex (a tick born disease speciality lab). I had an ELSA test which came back negitive and it was the reason we didn't persue Lyme. If I only knew then what I know now.
Someone can PM you a LLMD in your area. Try to get into see him... but at a minimum, call the office and talk to the nurse.
Please stick around.. let us know how he's doing. We are here to help and we like to hear when people get better!
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Get a picture of the rash!!!! Get copies of the records from the doctor that saw your son and the rash. Make sure the bullseye is documented by the doctor.
It would be too early for a test to come back positive so one would not expect a positive test at this point. The body has not had the time to produce the antibodies to get a positive test. Also, according to info on my State website, if abx is started right away, one may never have a positive test even if they do have lyme.
A bullseye rash is diagnostic of lyme disease. Your son NEEDS an LLMD NOW!!! There are other infections that are often passed with borrelia. He needs to be tested/treated for those infections too. You cannot get rid of lyme without getting rid of the other infections and it seems that many lyme patients have more than one infection.
I'm not a doctor so I can't tell you if his treatment is effective but the fact that the doctor did not know that it was too early to test for lyme disease tells me this doctor does not know what they are doing. I personally would not trust the CDC (and most people on this site will agree with me) or anyone who is not an LLMD with such an important issue. His best chance of cure is NOW!!!
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The tests are really not reliable soon after infection. If it was my child, I'd go for the better safe than sorry route and try to find a doctor willing to prescribe more antibiotics.
I might not do it if it weren't the rash or other symptoms.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thank you for your quick responses, I will try to find a lymes specialist in my area, I do have a picture of his rash that I took right away, which is good because the bullseye was gone the next day. I will keep you all updated, Thank You!
mitchellar31
Posts: 6 | From Wisconsin | Registered: Jun 2007
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posted
what does llmd stand for and how can I find a specialist in my area? I tried calling a few of the hospitals and they had no idea that there was such a thing as an llmd.
Posts: 6 | From Wisconsin | Registered: Jun 2007
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butchieboo
Unregistered
posted
There seems to be a few things in the text of your post that don't quite add up!
You say your dad and sister have both "had lymes". What do you mean "HAD"...??
Can you elucidate on the statement about your Dad having a "year bout with RA"...??
Did you know that even the IDSA has remarked that a "bullseye rash is indicative of a positive diagnosis for lyme(no S) disease"??
A positive blood test would not have a chance of occurring until approximately two weeks after infestation.
Furthermore, if this is "grandma's house" have you and family not visited before this past weekend?
If so, you all may well have lyme disease from previous unnoticed bites. In so far as your Dad and sister have "had lymes" what makes you think you don't have it as well given your familial proximity at the time of their infestation??
If I were you I would get EVERYBODY in the entire family tested....
What is it that this pediatrician at the urgentcare said exactly, at the time of your appointment?
She obviously is not familiar with the guidelines set up by even the IDSA when considering criteria for a clinical diagnosis of lyme disease...
your son has a minimum of three instances where a positive lyme diagnosis should be considered.
By all means do not delay in obtaining a second opinion from a credible physician...preferrably one who is conversant with the suspected disease.
No one here is qualified to give you a diagnosis, if that is what you seek, seek
elswhere, please,and do it quickly, if you are truly concerned with your youngsters future
health and welfare as well as the rest of your family... we can only give opinions pulled from our own experiences and perhaps quote the IDSA.
posted
I hope when you say " things don't add up" you are not implying that I am lying. I am not an expert on lymes disease so when I said my dad and sister had lymes disease, I meant the were both tested positive. In my sisters case she had a skin infection on her arm that persited for several weeks, she beleived it was impetigo because a friends son had it. When she went in to be tested they ended up doing a lymes test that came back positive and she was put on 21 days of antibiotics. My dad was not feeling well and went to a local free clinic in our area as he does not have insurance. The doctor ordered an all around blood test discovering he had lymes disease. When he was 18 he had RA for a year which paralyzed him, and actually kept him out of the war (thank god. He now suffers from severe arthritis and and has liver problems as I stated, but he also has hep. so any long term damage by lymes would be masked by that. As far as being tested I was tested when I was younger and came out negative. My Dad and Mom have been divorced for over 20 years and did not live together so him contracting lymes was never thought as being a risk to all of us. My sister had already lived out of the home for several years after her diagnosis as well as myself and my brother so our locations are not common. As far as "grandmas house" goes my husband and his four siblings grew up there with never a problem of lyme disease so I wasn't thinking my son would contract lyme disease when going out to grandmas. I do know that a bullseye rash indicates lyme disease as I mentioned in my first posting and that is why I wanted him on the extended med even with a negative test. The Ped. said she would put him on a 10 day round of amoxicillian 3 times a day for any infection caused by a bite and of the test came back posritive she would have him on an additional round of amoxicillian for 21 days. I hope this clears things up for you I am a bit put of by your rudeness, if you had read my post properly you would see I am not looking for a diagnosis. If you are not interested in giving advice than I suggest you look somewhere else. I would like to know if anyone has a listing of any LLmd in my area or if amoxicillian is appropriate for treating lymes?
[ 29. June 2007, 04:24 PM: Message edited by: mitchellar31 ]
Posts: 6 | From Wisconsin | Registered: Jun 2007
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posted
I don't know if amoxy is the right abx to treat early Lyme, but I do know the general consensus is to treat longer than 10 days. This is your only chance to prevent chronic Lyme.
If your dad and sister had positive Lyme tests after having health issues for a long time, 21 days of abx is not enough to get rid of it. Sadly, the ISDA thinks Lyme that went undiagnosed for years can be treated the exact same way as someone who was bitten today.
Post on the seeking doctor section for referrals to an LLMD. Don't be surprised if you have to travel ... I fly from Ohio to NY to see mine.
A bull's eye rash is diagnostic on its own. Take a picture of it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I'm surprised by BB's post to you. I appologize in his/her place.
Now for information and less critisim...
LLMD - Lyme Literate Medical Doctor.
The short of this stuff is that the CDC has trained the medical community that Lyme is a rare disease that can be cured with 21 days of antibitotic. There are a few docs that have done their research and do not buy into this training. These people are called LLMD's. I'm not surprised that the hospital says that they have no idea what that means. Remember they have been trained by the CDC.
I know this sounds like goverment coverup theory stuff... but we are all walking truths that Lyme is not cleared up in 21 days and that we need long term antibiotics to have any chance at getting our lives back.
If you were to go see your family doc or ped, they will give you the answer that he had a negitive test, and that he only needs a few days of antibiotics to be 'cured'. Honestly, this is very very poor advice. Its sad because most of us have been down this path before we did our own research and decided to find a doc who will take Lyme seriously.
The tests we take are a western blot from a lab called igenex. They are the only ones who test enough of the blood to have a good indicator if a person is suffering from Lyme or not.
Please do me a favor and spend about 1 hour reading through the NEWBIE LINKS at the top of this message board. It is filled with information that you might not know!!
Sadly, most people agree that if your son has a bulls eye rash, he most likely has Lyme. Now you have to determine which doc you are going to listen to about how to knock the Lyme out and keep your son well.
To find an LLMD, you can do one of two things..
1) Go to the message board on this site called "seeking a doctor". Post a message and someone can get back to you on where a LLMD is in your area. 2) I'll see if I can get someone to send you a private message to tell you who a doc is in your area. I noticed that your PM's are not turned on, so you might check your account settings and see if you can turn them on.
Again.. sorry for the rudness.. most people around here are very caring and concerned for you and your family. I'm sure thats that BB meant, but just said it in a very "matter of fact' sort of way.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
Thanks visual, I just felt like I was being accused of lying and it made me upset. Hopefully my long explanation cleared things up with BB. I will look through the newbie stuff and turn my pm on.
mitchellar31
Posts: 6 | From Wisconsin | Registered: Jun 2007
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posted
OK...just making sure it was not interpreted as being "incorrect"....In other words, that others would sadly interpret a bullseye rash as diagnostic when it isn't.
Oh boy....now that's confusing!!!!
Mitchell.....just to clarify....I agree with visual man that a bullseye rash is diagnostic.
Sorry about that, Visual!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am sorry too.
My four year old and five year old both tested positive for Lyme disease.
They are both on zithromax and are going to add in flagyl.
I don't know how long they have been infected.
Possibly since utero.
I am also sorry to hear about your Dad and his continued arthritis and minimum of antibiotic
Treatment both he and your brother had.
That is not enough to get "cured" of Lyme and may be why your father has these liver and arthritic problems.
What about co-infections like babesia and bartonella not to mention others.
I think, if you can afford it, or possibly if your Dad is on Medicare
Your whole family should go to a LLMD. You should consider
Getting a Western Blot through Igenex if you can afford it.
I didn't believe you were not being truthful. I am a Mom too.
Welcome to the board.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I agree with the others, 10 days is not nearly long enough for treatment - 21 days is barely long enough - 4 weeks is better, especially since he has the diagnostic bullseye rash.
One doctor told me that they believe that there is a genetic component to Lyme: that some people are more susceptible to getting chronic Lyme disease. With your family history, especially with your father's ongoing problems, you may convince the doctor to provide the longer antibiotic treatment on that basis alone. State that you do not want to take any chances with your child's future health and you want to get rid of this germ NOW.
Unfortunately you only have a short window of opportunity to get rid of the germ easily.
If after the 10 days of antibiotics are up, and you haven't found a LLMD, I'd return to the Pediatrician for a follow-up visit, and tell him face-to-face the above. Also tell him that you are aware that there are 2 standards of treatment (IDSA- the Infectious Disease Society of America vs. ILADS - International Lyme and Associated Disease Society) and that you want your child to be treated by the latter's more aggressive protocol. There is NO study that proves that 10 days or even 2 or 3 weeks of antibiotics is enough. There are plenty other diseases where a patient has a choice of protocols, Lyme disease should be no different.
As uncomfortable as it may be, you have to be your child's advocate.
With a 2 year old, it is tough to discern additional symptoms. I'd watch out for any indication that s/he is out-of-sorts: low-grade temperature, swollen glands,headache,irritability, holding his head, neck, arm or leg funny-even for short periods of time. Some Lyme symptoms can come and go in a matter of minutes...at first. If anything shows up, bring him back to the doctor.
Read, read, read. Knowledge is power.
OH, so your child doesn't end up with diarrhea from the antibiotics give your child some probiotics (They provide good bacteria for the intestinal system: yogurt, acidophilus etc.)
Best of luck to you!
Posts: 115 | From USA | Registered: May 2006
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What part of Wisconsin do you live in? I grew up in Dunn County and I think that's where I contracted Lyme disease.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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butchieboo
Unregistered
posted
Let's see....
Yes. No. Never done. Tick Fever. Mask not clear. Endemic or not? Length of time of dormancy of TBI's. Proximity when Dad had it. Cured? Too quick to go on defensive.
S. O. B. and D. E. B.
not rude by the way and I need no one to appologize for me...
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E ! ! ! ! !!*)!*)!*! !&)!&)!)*)!*)!*!)*!)!*)!*)!*)!!!!!!!!!!
Ignore the spats. Sometimes in cyberspace it gets weird because we can't see that things were not meant to be mean but just wry or ironic or silly I think...
I believe I got Lymed in Douglas County Wisconsin when I was 12~!!! but I went tertiary when bitten in Aptos CA 9 years back-
SOMETIMES 21 days is enough when someone is caught right away!!! I HOPE SO!!!! My kid had Lyme but is in full remission and it was no fun. Luckily amoxicillin tastes ok!!!
I have a 2 year old too!!! Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. But sometimes it is not enough!!! So have a back-up plan and a Lyme doc waiting just in case!! You don't want him to go chronic!!!
p.p.s. ALSO, Wisconsin has a strain that will test negative on standard tests!!!! Most docs there have no clue about that, of course!!! Like everyhwere, links between entomology & MDs are not so good!!
1: J Med Entomol. 2005 May;42(3):457-72.Links
Presence of Borrelia burgdorferi (Spirochaetales: Spirochaetaceae) in southern Kettle Moraine State Forest, Wisconsin, and characterization of strain W97F51.
Caporale DA, Johnson CM, Millard BJ. Department of Biology, University of Wisconsin-Stevens Point, Stevens Point, WI 54481, USA.
Lyme disease, caused by Borrelia burgdorferi Johnson, Schmidt, Hyde, Steigerwalt & Brenner; babesiosis, caused by Babesia microti Franca; and human granulocytic ehrlichiosis, caused by Anaplasma phagocytophilum Bakken & Dumler have been reported in Wisconsin, mainly in the endemic areas of the northwestern part of the state. People exposed to blacklegged ticks, Ixodes scapularis Say, from this region can potentially contract one or all of these diseases concurrently.
Within the past several years, there have been cases of Lyme disease reported from southeastern Wisconsin, an area that contains deer, mice, and similar vegetation found at regions with high endemicity. However, past white-tailed deer surveys suggested no existence of I. scapularis in southeastern Wisconsin. However, in 1996, we identified questing adult I. scapularis in the southernmost part of the Southern Kettle Moraine State Forest, Walworth County.
To determine whether an established population of I. scapularis exists in this region, we performed a detailed survey of the abundance of host-seeking I. scapularis adults and the presence and abundance of subadults feeding on white-footed mice, Peromyscus leucopus Rafinesque. We also tested for possible infections of B. burgdorferi, Ba. microti, and A. phagocytophilum in ticks and B. burgdorferi harbored by mice. In 1997 and 1998, a total of 249 P. leucopus mice and 118 questing adult I. scapularis ticks, in addition to 157 larvae and seven nymphs feeding on mice, were collected and their locations were recorded from the Nordic trails of the Southern Kettle Moraine State Forest.
Only one P. leucopus and its attached engorged I. scapularis nymph were infected with B. burgdorferi, whereas none of the engorged larvae attached to mice were infected. However, 4.2% of questing adult I. scapularis were infected with B. burgdorferi.
The abundance of questing adult I. scapularis was 1.6 ticks per hour. The prevalence of subadult ticks on mice was 27%, with a mean intensity on infested mice of 2.0. I. scapularis adults were not infected with either Ba. microti or A. phagocytophilum.
A unique strain of B. burgdorferi s.l. (W97F51) was discovered, showing 33 nucleotide substitutions and one codon insertion in a 567-bp fragment of the OspB gene, compared with Borrelia bissettii (strain Ca389). The sequences of ospA, ospB, ospC,fla, and rrs genes and the rrf-rrl intergenic spacer region were compared between W97F51 and other B. burgdorferi s.l. species.
Although W97F51 was most genetically related to B. bissettii, the genetic identity of W97F51 was less than that of B. bissettii conspecifics.
This study documents the existence of an established population of I. scapularis and the presence of B. burgdorferi with a novel strain in southeastern Wisconsin.
PMID: 15962800
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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