posted
My 10 yr old son was bitten while at camp in North Carolina approximately 3 weeks ago.He pulled the tick out of his scalp and his counselor disposed of it.2 days ago Friday pm he developed a sudden headache with fever(as high as 103*),malaise,myalgia.The fever has returned repeatedly even with OTC treatment.I spoke to family MD who felt secure enough to have us wait until today(Monday)to see her for a"Lyme Titer." Please,I hope no one on this forum will be offended but it is nearly impossible to wade thru the multitude of topics...I need direction and focus to help my son.On the one hand I have an awful lot of websites that consistently say what to do yet all consistently also say that the testing is almost never conclusive and yet somehow the treatment is effective?Then I luckily(?)find this site that states almost in one voice that medical science is essentially clueless and that I may not even be able to find a qualified medical professional. I understand that Lyme disease may not have been detected early enough for the majority of the posters here and I consider that a travesty but am I to conclude that even when Lyme disease is detected early the treatment is not definitive?Are the testing protocals reliable?Please give a parent some of the tools he needs to at least make rational decisions on behalf of my son.
Posts: 1 | From Louisiana | Registered: Aug 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Just breaking this up for others to be able to read:
My 10 yr old son was bitten while at camp in North Carolina approximately 3 weeks ago. He pulled the tick out of his scalp and his counselor disposed of it.
2 days ago Friday pm he developed a sudden headache with fever(as high as 103*),malaise,myalgia.
The fever has returned repeatedly even with OTC treatment. I spoke to family MD who felt secure enough to have us wait until today(Monday)to see her for a"Lyme Titer."
Please,I hope no one on this forum will be offended but it is nearly impossible to wade thru the multitude of topics...I need direction and focus to help my son.
On the one hand I have an awful lot of websites that consistently say what to do yet all consistently also say that the testing is almost never conclusive and yet somehow the treatment is effective?
Then I luckily(?)find this site that states almost in one voice that medical science is essentially clueless and that I may not even be able to find a qualified medical professional.
I understand that Lyme disease may not have been detected early enough for the majority of the posters here and I consider that a travesty but am I to conclude that even when Lyme disease is detected early the treatment is not definitive?Are the testing protocals reliable?
Please give a parent some of the tools he needs to at least make rational decisions on behalf of my son
-------------------- 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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posted
UNBELIEVABLE that a doctor would just not prescribe your child antibiotics in the interim based on exposure/symptoms!!!
Anyway, as for today, be sure to have the doctor not only run the Lyme ELISA but also the Western Blot. Also have the doc run a test for Erlichia and Rickettsia as well as high fevers, etc. are often a symptom of those pathogens as well. Demand treatment for your child NOW....there is no reason to wait for the test results to come back.
Currently available tests have their flaws so be sure to obtain a copy of your test results for you to get further assistance with interpretation (you'll get help here). It can take up to 6 weeks for the body to solicit an antibody response strong enough for the tests to detect so a negative does not mean one does not have lyme.
Many of us here would suggest treatment for at least 6 weeks based on early detection/diagnosis but of course symptoms will dictate if more is needed.
I think this is enough to get you started for today but after the appt., you may want to think about bringing you child to a doctor who really understands tick-borne infections....you can get help here with doctor suggestions near you.
I'm sure everything will be fine!! Fortunately if it is lyme, you've caught it early on...
Posts: 561 | From mass | Registered: Jul 2007
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posted
I recommend finding a doctor who takes lyme seriously asap. An LLMD if possible, which you can get names for by posting in Seeking MD section.
My 3yo son was bitten and developed a rash about 3 months ago, and we are currently in the 9th week of treatment, and still symptomatic (they come and go some days). For example, I thought a week ago he had turned the corner when he had three good days, and since then, the low grade temps, aches, fatigue, sore eyes...
The one thing I've conclude about this is it is different for everyone. I'm sorry your family is now affected too. If your doctor isn't wanting to treat it aggressively for an extended period of time, I would go elsewhere.
Also, my son's first lyme test was negative, which our doctor expected, but the second one, about 8 weeks into it, came back positive.
We are currently awaiting the results of last weeks blood work retesting for co-infections others mentioned including Rocky Mountain Spotted fever which can come on with high temps, babesia, and bartonella.
Good luck and prayers you can find a good doctor and get this over as soon as possible.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
While you are figuring out the next step (getting to an LLMD), tell your doctor that you are concerned about Erlichiosis and Rocky Mountain Spotted Fever and you want abx for your child now, no waiting on test results.
Based on the fever alone, and the history of tick bite, abx are warranted.
NC has had cases of both of these diseases, and they need to be taken seriously.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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bettyg
Unregistered
posted
andrew, welcome; so glad you found us!! please break up all future posts/replies into short sentence paragraphs as disturbed did for you ... it's so we neuro lyme folks can read and comprhend in order to help you!!
disturbed, god bless you for breaking that up for me and other neuro folks.
check my profile for KIDS LLMDS ... conn., nj, and ny.
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posted
Wow. Even if he did not have had the rash, he still may have lyme; the rash does not always appear. With a fever like that I would suspect coinfections-- Ehrlichia seems likely. I had similar fever, and I had Lyme, ehrlicia, and babesia. It is probably CRUCIAL that he get on antibiotics immediately! Hopefully you're not past the "window", but given my experience it's not looking good. Doxycycline is good for treating both lyme and ehrlichia. Ehrlichia can be serious; I hope you can quickly find a decent doctor. As you have seen, doctors who really know about lyme and other tick diseases are hard to find.
Yes there is alot of stuff to wade through on lymenet. And most of us ar not MD's. But experience speaks pretty loud, so it behooves you to give ample consideration to take seriously what you read here. It may well have saved my life, and in any case has enabled me to recover and live relatively free of symptoms! DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Geez, Louise, I hate to constantly read the same stories about drs who dont have a clue.
Kid has a tick, kid has symptoms, ...what is the dr waiting for in not giving abx? Idiot drs..
Ive got a friend who recently came down with flu, rash, swelling, severe joint pain, and I told her to get a lyme test. So what does the dr prescribe, prednisone.. Geez, dump drs.
Anyway, my advice is the same echoed from everyone else. See a LLMD asap, and in the meantime, get your kid on some abx pronto!
Posts: 514 | From . | Registered: Apr 2008
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posted
I would strongly recommend finding an LLMD in the seeking doctor section.
I contracted Lyme when I was 9 and it wasn't treated until a few months after my initial fever.
While initially my symptoms got better I have had many "mysterious" symptoms since I was about 11.
I am now 26 and I believe I may still be infected.
You need someone who is willing to diagnose Lyme base don clinical signs (in other words the signs that your son has already shown).
You also need someone who will treat it agressively.
Also keep an eye on your son. If he shows anything strange later on down the road see an LLMD.
-------------------- I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today. Posts: 83 | From New Jersey | Registered: May 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
There is a lot of controversy and politics surrounding lyme disease diagnosis and treatment. There are 2 guidelines for lyme disease. The one that the CDC touts is promulagated by the Infectious Disease Society of America. It has been challenged based on conflicts of interest and a new panel is being convened to re-evaluate the guidelines. This is the guideline that most doctors ignorantly use.
The second set of guidelines are put out by a group of doctors who specialize in treating tick borne infections (TBI's). www.ilads.org
Neither lyme or co-infection testing is good and laboratory testing cannot be relied upon as the be all, end all in diagnosis. Many strains of co-infections are still being discovered. Borrelia has 300 strains but only 1 or 2 are tested for. As you can imagine, this leaves a lot of gaps in testing and there are many other issues with testing.
Tests don't look for the organism, only for antibodies to the organism. Some people are not good at making antibodies to borrelia. The organism itself has some unique methods of disabling our ability to fight it off. Some people are genetically better able to fight it off than others.
I strongly suggest that you find an LLMD (lyme literate medical doctor) who is associated with ILADS. They are experts in treating lyme and co-infections. They are well acquainted with how to diagnose lyme and co-infections clinically which is not the case with the majority of other doctors.
Most doctors ignore co-infections even though there are many studies that show they are commonly found in ticks that care borrelia (the bacteria that causes lyme disease).
Clinical diagnosis is warranted, even by CDC standards. The most accurate testing you can get is through IgeneX. They specialize in TBI's.
I hope you will take this seriously for your son's sake. Go to the seeking doctors section of this website and put your location in the subject line. Ask for a list of LLMD's in your area.
In the meantime, insist that your son get abx ASAP!!! Keep checking the site of the bite for a bullseye rash or any kind of rash. If he has a rash, take pictures. Keep a diary of when and where he got the byte, symptoms and treatment so that you can give a clear picture of his situation to an LLMD.
you wrote: am I to conclude that even when Lyme disease is detected early the treatment is not definitive?
*IF* a person is adequately treated, the majority get better. By adequate, I mean a high enough dose of appropriate abx along with diagnosis (clinical or laboratory) and treatment of co-infections. Treatment must also be given for a long enough period of time.
The protocol that most doctors (non-LLMD's) prescribe uses about 1/2 of an effective dose for borrelia, does not give treatment for a long enough period of time and does not address co-infections at all. From what I've seen, the majority of lyme patients who can't get well have untreated co-infections. Untreated co-infections make treating lyme ineffective.
I hope your son gets well quickly. Terry
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