posted
My son first presented with two small bulls-eye "bites"..no tick has ever been seen on him and these bites were in a cluster of five mosquito bites on his calf. The bulls-eyes lasted not even 24 hrs, so dr. said not to worry or come in. Three wks later, I'm in Nashville visiting Mom and once again, two bites..one on neck and one on leg show bulls-eye signs. I took him to Vanderbilt clinic and literally BEGGED for a lyme's test. Only one of the four drs would agree to it. Bloodwork came back that he had three of ten strands test positive. Apparently you need five out of ten to be positive for Lyme's Diagnosis??? He was put on a 14 day regimen of AMOX. 400mg. twice daily. I'm worried I need to pursue this investigation as to what's going on with him. Can anyone comment on this? Thanks so much for your time. I'm feeling desperate.
-------------------- allison Posts: 2 | From OHIO | Registered: Nov 2008
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bettyg
Unregistered
posted
It is sometimes difficult for us to comprehend large blocks of text, and because I wanted you to get more answers, I broke this one up for you. Please do this in the future ok. thanks
[QUOTE]Originally posted by Sassy:
My son first presented with two small bulls-eye "bites"..no tick has ever been seen on him and these bites were in a cluster of five mosquito bites on his calf.
The bulls-eyes lasted not even 24 hrs, so dr. said not to worry or come in.
Three wks later, I'm in Nashville visiting Mom and once again, two bites..one on neck and one on leg show bulls-eye signs.
I took him to Vanderbilt clinic and literally BEGGED for a lyme's test. Only one of the four drs would agree to it.
Bloodwork came back that he had three of ten strands test positive.
Apparently you need five out of ten to be positive for Lyme's Diagnosis???
He was put on a 14 day regimen of AMOX. 400mg. twice daily. *******************************
I'm worried I need to pursue this investigation as to what's going on with him. Can anyone comment on this?
Thanks so much for your time. I'm feeling desperate. ****************
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
*************** sassy,
so glad you joined and posted this on 4 yr. old son!
1st i've never heard of anyone going to vanderbilt; assuming you spoke to INFECTIOUS DISEASE DR FROM 14 DAYS ONLY MEDS GIVEN!!
1st, STAY AWAY FROM INFECTIOUS DRS. they don't believe in chronic lyme and they UNDERTREAT under 3 wks. so patient becomes chronic!
below in my newbie info; print off/read dr. burrascano's lyme guidelines and pay attention to KIDS MEDS/dosages ok!!
please copy my BROKEN UP version and start a NEW POST, found in small black/white boxes, in SEEKING DR.
NONE IN OHIO!
we have 13 NATIONWIDE!! most on east coast
there are in penn, conn, nj, ny, closest to you!! ************************************************
show KIDS LLMS NEEDED in .... and show OTHER STATES YOU'D TRAVEL TO FOR HIM OK!!!!
paste my broken up post about son's medical history there.
go to lower left hand corner and mark box for all replies to come to you; click send!
best wishes.
******************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
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specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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posted
Get a copy of the test results and tell us what it says. Sounds like a western blot test.
Lyme is a clinical diagnosis. What you were told about needing five bands is for surveillance, not for deciding who gets treatment in a doctors office.
Vanderbilt is not known for lyme literacy.
Have you contacted OH support groups?
Hope you got pix of bullseye rashes.
[ 04. November 2008, 10:25 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Sassy,
Be sure to get a copy of your Western blot test or any other test results as Lou suggested.
A negative test result is very common in people with Lyme disease. There are many reasons for this. One reason is that Lyme causes immunosupression...when your immune system is sick, you will not produce the antibodies that the Western blot is designed to detect.
That's why they say Lyme disease is a clinical diagnosis. Positive test results are just icing on the cake...but they aren't essential for making a diagnosis. A good physician will consider your history, where you've traveled, where you live, and if you've ever had a tick bite or a rash after a tick bite, in addition to your clinical symptoms.
Read the fine print when you receive these test results. The CDC's purpose with this testing is to track the spread of this disease, not to diagnose the disease. They have a very narrow definition of what they consider a case of Lyme disease. Positive test means your case will be added to the official Lyme case count for your county & state. It doesn't mean anything diagnostically...because the test is used to decide who will be tracked.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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The bullseye rash in and of it's self is indicative of lyme. Also, it can take 4-6 weeks before antibodies are built up enough to have a positive lyme test.
At least the docs prescribed abx, but now your next step is to find a doc that knows what he or she is doing with lyme.
You do not want to leave this untreated or undertreated, as your child can end up pretty sick.
Best of luck, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
What does "show bulls eye signs" mean?
Were they definitely bulls-eye rashes?
He could have Lyme without the bullseye(s) but in your post you make it sound like you are referring to mosquito bites. I don't know much about the bullseye rash, like if it has to appear where the bite was, etc.
Some people "suspect" mosquitoes can transmit lyme, but the jury is still out on that.
I'm not saying he doesn't have Lyme, but I just want to make sure we are talking about a Lyme rash.
Does he have other symptoms besides the rash?
If he has symptoms of Lyme, you may want to see an LLMD that will treat him based on his symptoms, regardless of positive or negative bloodwork.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
The antibiotic treatment makes no sense. If it is Lyme, it is not long enough, and if it is not, then abx are not needed. Did the MD give 14 days just to pass the problem on to another doctor?
At least you have some time to investigate further, but be aware that if your son did get bitten by a Lyme tick, two weeks is not enough treatment to prevent further problems.
I forget the best dose, too, especially for a little guy- anyone? You can check on that site with Dr Burrascano's guidelines, too.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
The first article here (Savely) explains the political barriers that have developed over lyme. But with the bulls eye rashes AND so many positive bands on your son's test - it seems clear.
Lyme requires combination treatment and for much longer time that what your doctor prescribed. As BettyG posted, Dr. B's guidelines detail pediatric treatment. I hope you can find a good doctor, what is known as a LLMD - a lyme literate medical doctor and one who, if not a member, has read all the ILADS research.
So much more to this. Sorry that you are going through this.
One good thing is that the earlier the treatment, the better chance of success. But if I were to have a child, I'd want to see a doctor who has treated hundreds - or thousands - of lyme patients. If you can get to a pediatric LLMD, that would be best but they are few in number.
None of this is taught in medical school. These LLMDs have taken great energy and dedication to educate themselves. You can get DVDs of many of the seminars but the links here will get you started.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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