posted
I have an strong clinical presentation of Lyme's with many neuro symptoms and had a + Elisa but a - Western Blot. Has anyone experienced this and how did you convince your doctor to treat you for Lymes's? Seems like there is a 4-5 month wait to get in to any reputable LLMD. I am having new symptoms each week and am afraid to delay treatment that long.
Just fyi - I've had two normal brain MRI's, a normal head CT and x-rays of my cervical and lumbar spine show excessive arthritis for my age.
My doctor's office did the blood draw on the Weds before 4th of July and it took until the following Weds for me to hear that I had a positive ELISA. They then did the WB test on blood that was over a week old - could this affect the results and give me a false negative?
Also wondering if the length of time you have had Lyme's can affect the outcome of the WB. I believe I have had this for over a year now.
One more question - I had been on antibiotics (a 10 day course of Ceftin, 500 mg) approximately 6 weeks prior to the blood draw - could this affect the results too?
Thanks so much for your help!
Aimee
Just fyi my symptoms include the following:
Horrible fatigue Daily headaches Left side facial tingling Tinnitus Back and neck pain Muscle aches - especially in my legs Feet and legs tingling Twitches Mentally - just kind of off and much slower than normal Night sweats Insomnia Knee swelling and pain Off and on fever and sore throat pelvic pain conjunctivitis word loss - just can't place the word i am looking for alot of the time many more
Posts: 239 | From Virginia | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi and welcome!
First I would get an appt with a good LLMD since every day that passes is more of a wait.
Chances are your western blot was not through Igenex. You could get your Dr to order test #188 and #189 from them....cost $200
www.igenex.com order free test kit and get blood drawn on a Mon or Tues morning only. Lab must fedex blood out same day.
Then print this entire paper by a lyme expert if you can and read it all....
Your Dr doesn't know enough about lyme to diagnose or treat you. You could ask him to read this same paper.
Pay attention to the symptom list p 9-11, the western blot info on p 7 and the coinfection info p 23-27.
Point out that lyme is a clinical diagnosis...based on history and symptoms...never ruled out by just a neg lab test.
The fact that you got a postive ELISA is practically a miracle.
Print out and fill out the symptom list from that paper and show your Dr.
Ask him to to try an antibiotic challenge.....200 mg doxycycline twice daily...and see if you herx....more to convince him than you.
Just don't have blood drawn for a WB while on antibiotics....you could take med for a couple weeks if he will prescribe....go off for 2 weeks and then have WB...sometimes this helps antibodies show up.
You really need a good LLMD....that's the bottom line.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
aimee, please post in seeking dr. forum,
copy your above post there with all this valuable health history you hve given us.
show VIRGINIA or whatever state you want LLMD NEEDED in subject line
i know of some places that do not take 4-5 months to get in and are GOOD!
i don't know if i sent this to you or not, so sending again IF i did earlier ...'
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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes Aimee, These guys know what they are talking about. Please post Seeking Dr. in XXXX. The
sooner you get an appointment the sooner you can start feeling better. With a positive Elisa and
the symptoms you have you do not need a positive WB to get treatment. I would not worry especially
if you did not get tested through a Lyme specific lab like Igenex. You can gather all testing and
lab reports, while waiting to get in appointment with a LLMD. Another good clue you did not list
is body temp. below normal. Hope you find a good one and continue reading to learn what you can
try to help you resolve symptoms. My first WB neg. Igenex pos. Jan. 09
-------------------- 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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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I agree with all those that posted before me. I am only adding my comments to provide you with extra encouragement to make an appointment with an LLMD just as soon as you can.
Unfortunately you were correct in saying that it can take months to get an appointment, but it is soooooooo worth being evaluataed, diagnosed and treated correctly. In the meantime your symptoms will continue to be of concern. New ones may even occur and old ones will magically disappear. Some will get worse.
If you get frightened or feel you are in danger you should go to the ER. But in the meantime make your LLMD appointment and hang in there. You can always come here to LymeNet for support.
Most of us have been through similar situations.
As for the difference in your ELISA and Western Blot test results, yes, those results can happen, but not much about those tests are accurate. My LLMD says they are not worth the paper they are printed on.
You should be tested by Igenex. They are the most reputable. In February, 2009, I was negative on the Western Blot ordered by my PCP. I can't remember if it was Quest or LabCorp that did the testing. The next month I had my first LLMD appointment. He tested me with Igenex and I had several significant positive Lyme bands. I also had co-infections that were causing me trouble.
I wish you all the best. It will get better. The road to recovery is a long one, though.
-------------------- 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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posted
Thank you kind souls for your replies - it is comforting to know I still may be on the right track in diagnosis with Lyme's even with my negative WB. We have pretty much ruled out everything else so if you said no way I think I would have cried! I have also had a low body temp lately (97.4 these days instead of my normal 98.5) in the last several months which I thought was strange but didn't attribute to Lyme's. Why does that happen?
I've already scheduled an appointment with an LLMD but they said the earliest they would start taking new patients again is November. I have a list from several friends and folks here who have emailed me of other doctors to try. Also Turn the Corner Foundation emailed me a length list of ILADS affiliated doctors to try. That will be Monday's task.
I'll work on the IgeneX paperwork and take it to my PCP on Monday when I go for my follow up - hope he is receptive.
Thanks again - this board and you folks are wonderful!
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Not sure why those of us with Lyme have lowered body temperatures but my LLMD says it is common.
Let us know how things work out for you.
-------------------- 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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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Lyme bacteria like low body temp so they can thrive.
The bacteria do not do well when your temp is high.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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