My 14 month old daughter has a round target looking rash on her arm and another smaller one forming on her wrist. I took her to her doctor yesterday and they did a blood test for Lyme Disease and it came back negative. I am not convinced. Can I still request for her doctor to give her the antibiotic anyway even if she has not been diagnosed with Lyme disease? I want to get this taken care of early if she does happen to have it. We were in the mountains in Colorado near Estes Park last Saturday and spent time near the river surrounded by trees and shrubs so there is a possibility she was bitten by a tick. Her doctor said there has not been a case of Lyme disease in Colorado and it is very rare here. I am stressing out about it! Please help! Thank you.
Posted by Veronica Baragona (Member # 21877) on :
Your doctor is full of ****! Find a Lyme doc to treat her she has lyme if she has a B E rash. She will usually not be positive in testing while she has a rash.
She will become positive later on maybe a month when she begins to produce antibodies, then become negative again as the lyme begins to learn how to hide from the immune system.
Lyme disease is everywhere. He does not believe in Lyme so he will not see a case. I am not sure what the people around here use to find a Lyme doc near you but I used email
[email protected] say where you need a lyme doc she emails you back w the one closest to you.
Please dont listen to that doc. Follow up with a Lyme doc before it becomes hard to treat.
She should be being treated noe before it gets out of her blood and into her tissues .
You should be able to sue him for allowing it to progress past her blood.
And Doctors are advised by the CDC to treat any bullseye rash , before they even get test results back for the reason of not letting it get past the blood!!!!
[ 08-22-2009, 12:21 AM: Message edited by: Veronica Baragona ]
Posted by bettyg (Member # 6147) on :
MAYER, so glad you are PERSISTING to get your toddler on ANTIBIOTICS TODAY!!! ***********************************
i posted in another post; print off the meds/dosages KIDS/ADULTS MED LIST i gave you in my welcome letter....
take that to dr/ER ... get your child on immediately.
also take photos of it from different angles using coins or $1 bill to show size and having TODAY'S DATED NEWSPAPER IN CLEARLY VISIBLE AREA!!
to both of you, please break up your long paragraphs and have MANY, SHORT paRAGRAPHS and DOUBLE SPACE BETWEEN EACH PARAGRAPH please for us severely neuro lyme folks like me who can NOT read or comprehend as typed. thanks to you both.
use my guidelines below since you are both knew n how to edit; hugs
TO NEW PATIENTS ...
PLEASE START YOUR "OWN" POST PLEASE!
look for the small black/white box at top/bottom says NEW POST
subject: show largest city closest to you, your STATE llmd needed
if you need KIDS dr....show KIDS LLMD in ..show YOUR STATE NAME. only 15 nationwide!!!
if it's for a child...WE NEED KIDS AGE; some have age restrictions and we can serve you quicker if we know this to begin with
go to lower left hand corner and mark box to receive all replies; send!
please see my guidelines below for posting please; you'll receive my help if you follow this since i've had chronic lyme for 39.5 yrs!! very severe neuro patient
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Yes, insist on abx. My daughter is in her bed 24/7 with a headache now. She had a bullseye rash (that only I saw), but I was told no Lyme in TX so no abx.
I would risk a possibly unneccessary round of abx instead of risking untreated Lyme and all that can bring.
I have found a few natural health type MD's that will give abx for Lyme. You might try looking for someone like that if you can't get into a Lyme doctor quickly or get your regular pediatrician to do it.
Taking a picture is a good idea.
Posted by tick battler (Member # 21113) on :
I would go to another doctor ASAP to get abx. I would just lie and tell them that you saw a tick. It is very important to start treatment ASAP so the lyme does not become chronic.
Our LLMD told us you really need to start treatment in that first 30 days, or it often becomes chronic. The bulls eye rash can come within 30 days of the tick bite, and sometimes appear later during treatment as well.
Also, lyme testing will be negative until around 30 days after the bite because your body has not had time to develop an antibody response to the lyme! Even then, you may not get a positive. Your doc should know this!!!!!!
My 3 young children all have chronic lyme and it is a nightmare you don't want to get into. They may need 3 years of abx treatment. If you can get a month to 6 weeks of treatment now, you can probably avoid what I'm dealing with.
Good luck to you.
tickbattler
Posted by AliG (Member # 9734) on :
Breaking up for easier reading by those with Neurological involvement:
quote:Originally posted by amayer22:
My 14 month old daughter has a round target looking rash on her arm and another smaller one forming on her wrist.
I took her to her doctor yesterday and they did a blood test for Lyme Disease and it came back negative. I am not convinced.
Can I still request for her doctor to give her the antibiotic anyway even if she has not been diagnosed with Lyme disease? I want to get this taken care of early if she does happen to have it.
We were in the mountains in Colorado near Estes Park last Saturday and spent time near the river surrounded by trees and shrubs so there is a possibility she was bitten by a tick.
Her doctor said there has not been a case of Lyme disease in Colorado and it is very rare here.
I am stressing out about it! Please help! Thank you.
quote:Originally posted by Veronica Baragona:
Your doctor is full of ****! Find a Lyme doc to treat her she has lyme if she has a B E rash.
She will usually not be positive in testing while she has a rash.
She will become positive later on maybe a month when she begins to produce antibodies, then become negative again as the lyme begins to learn how to hide from the immune system.
Lyme disease is everywhere. He does not believe in Lyme so he will not see a case.
I am not sure what the people around here use to find a Lyme doc near you but I used email [email protected] say where you need a lyme doc she emails you back w the one closest to you.
Please dont listen to that doc. Follow up with a Lyme doc before it becomes hard to treat.
She should be being treated noe before it gets out of her blood and into her tissues.
You should be able to sue him for allowing it to progress past her blood.
And Doctors are advised by the CDC to treat any bullseye rash, before they even get test results back for the reason of not letting it get past the blood!!!!
What was the Dr's explanation for the bulls-eye rash, if NOT Lyme?
see this publication (You'll need to copy & paste to your search bar because for some reason the HTML code won't let me post the link, sorry ): Three Multiplex Assays for Detection of Borrelia burgdorferi sensu lato and Borrelia miyamotoi sensu lato in Field-Collected Ixodes Nymphs in North America
That's just two from googling "pubmed borrelia Colorado". I'm sure there's plenty of other information out there to show that it does IN FACT exist in Colorado.
I hate stupidity, ESPECIALLY in physicians.
Good luck. My prayers are with you & your little one.
Ali
Posted by bettyg (Member # 6147) on :
ali, god bless you for breaking up both their posts.
i sent mom some additional info on a kids llmd who doesn't have a long waiting list.
mom, for colorado LYME statistics, use the following ok to take to your drs.
www.lymememorial.org by melanie reber has EACH STATE shown separately with info galore....
1980 - Jan. 2008 ...all 50 states broken down by years!
Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only!
So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda
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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. ![[confused]](graemlins/confused.gif)
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