posted
Sorry for the questions in advance, but I just recently had a clinical diagnosis of Lyme Disease based on a rash on my arm and have been having some telltale symptoms of fatigue and joint pain/muscle soreness. My first blood test occurred on the day the rash was identified but likely only 6-7 days after the tick bite. It came up negative. Is there a certain timeframe for the antibodies to appear in the blood to confirm if it is indeed Lyme Disease? Is there a specific blood test that I should request? Also, does anyone have any info on LLMD's in the Rochester, NY area? Any help would be greatly appreciated.
c1pher
Posts: 3 | From Rochester, NY | Registered: Jul 2009
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From what I have read, getting a positive blood test this close to your tick bite is unlikely. Also- if you went through regular (ELISA) testing, then the false-negative rate is very high.
I don't know any LLMD's in your area, but going to see one is a very good idea! The treatment given by non-LLMD's is usually not sufficient.
When you do see your LLMD, they will know when and where you should get tested. (For reference, pretty much the only reliabe lab is Igenex. )
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
I just read Dr. B's guidelines and am also a little worried because the NP at my doctor's office only put me on 100mg BID of Doxycycline. It appears that the recommended dosage is much higher. I have experienced some alleviation of symptoms (more frequent times when I have my regular energy back, but followed by a crash) but am still experiencing fatigue and joint pain.
c1pher
Posts: 3 | From Rochester, NY | Registered: Jul 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by c1pher: Is there a certain timeframe for the antibodies to appear in the blood to confirm if it is indeed Lyme Disease? Is there a specific blood test that I should request? Also, does anyone have any info on LLMD's in the Rochester, NY area? Any help would be greatly appreciated.
c1pher
The amount of time it takes for a person to make enough antibodies to show up in a blood test varies. Some people test positive after 6 -8 weeks, others a few months later, some never at all. Therefore it is not unusual for your test to be negative.
The most accurate test for Lyme disease is from Igenex Labs (www.Igenex.com). LLMD's will usually test with this lab, but generally other doctors do not.
Your rash is a confirmation of Lyme, but an LLMD will probably still do an Igenex test and also test for co-infections. Unfortunately they are very common. Most of us with Lyme have them too.
To find an LLMD in your area it is best to post in "Seeking a Doctor" and someone will be along to give you a referral or two. It can take a few months to get an appointment so it is a good idea to start your research now.
I don't know how much Doxy a person needs, but I do know you were not prescribed enough. Also, it is not unusual for a person to feel better one day and awful the next. Sometimes this can even change hourly. It's enough to make a person nuts!
Sorry you were bitten. Hope you feel better soon.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The timeframe for the antibodies to appear is variable--"several weeks" according to Burrascano. See quote below:
ERYTHEMA MIGRANS Erythema migrans (EM) is diagnostic of Bb infection, but is present in fewer than half.... The EM rash will begin four days to several weeks after the bite.... After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed. Therefore, if EM is present, treatment must begin immediately, and one should not wait for results of Borrelia tests. You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance. (p.7)
Here's the link to the Burrascano lyme treatment guidelines for your reading pleasure:
This is the best source of lyme disease treatment information. Dr. Burrascano is the lyme disease guru in the U.S. and the world.
A lyme doctor generally will order a lyme disease test (Western Blot IgG and IgM) from Igenex--a tick borne disease specialty lab in California. But lyme docs won't do this if a patient has just gotten bitten. They know better.
Once some time has passed, a lyme doc will order coinfection tests from Igenex to see what other diseases the tick gave you with that bite. You generally don't get lyme disease alone unfortunately.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would prefer to be treated for a lot longer than
IDSA recommends. I would find a LLMD and do get
plenty of pics. The testing is not as important
when you have the rash.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Personally, I would want 400mg of doxy per day for 6-8 wks. You have a small window of opportunity in order to knock this out NOW!!!!!
forget about testing.. the rash is proof enough.
If it's still there or if it comes back, GET A PHOTO OF IT!!!!
Put your face in the photo. You may need this for proof later. ( trust me ) YOu might also want to get one photo with the date of a newspaper in it next to the rash.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
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. ------------------------------------------------------
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 get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ 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!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
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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. 
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