posted
Hello! I'm here because I've been unable to find someone to listen to me anywhere else. I'm sad and frustrated.
Here's a little back story. Last summer, I was bit by 2 ticks (a week apart from eachother) and only put on 1 days worth of antibiotics. I began to have bouts of muscle and joint pain and headaches (never this bad) but didn't think anything of it. I was diagnosed on two separate occasions as having costochondritis (inflamation of the chest wall) because I was having chest pain and my heart and everything else was fine.
For the past 2 weeks, I've been suffering from unexplained sweats, fatigue, swollen glands in my neck, upset stomach, diarrhea, chest pain & rib soreness, cough that wakes me up in the middle of the night, joint pain (neck, back, shoulders, elbows, knees, ankles, fingers and toes), swelling (knees & feet), stiffness of my joints including my neck and back, muscle pain and charlie horse-like cramps in my arms and legs, headache, numbness, burning & stabbing sensations, shooting pains, double/blurry vision, light sensitivity, ringing in my ears, ear pain, sound sensitivity, dizziness, difficulty in thinking, diffculty with concentration/reading, poor short term memory, mood swings/depression, disturbed sleep (2-3 hour intervals, restless legs, creepy crawly feelings)
My white blood count came back and 13.5 (should be under 10.8) and neutrophils came back at 11,192 (should be under 7800). My family doctor started me on abx because of the infection showing up with the white blood cell count. She has said she believed it was Lyme from the get go.
I'm finding it hard to decipher the Lyme tests. The area that says Lyme AB says 1.66 (Out of Range). Ehrlichia, Babesia Microti, etc. all show negative (In Range). The Western Blot came back as well and here is where I get confused:
Lyme Disease AB (IgM) WB Negative
Then, below that it says:
23 KD (IgM) Band - Non Reactive
39 KD (IgM) Band - Non Reactive
41 KD (IgM) Band - Reactive
Lyme AB - 1.66 Positive (Out of Range)
Today, I go to a supposed LLMD who says I don't have Lyme and that he thinks I have viral meningitis or a summer virus and tells me to continue the antibiotics in case it IS Lyme. He said because the WB didn't back up the Lyme AB screen that it means I don't have it. Does this make any sense to anyone? I'm at my wit's end because I feel like there's no one out there who is willing to listen to me...
I went to a Rheumatologist who told me that she believes it's Fibromyalgia. Sorry for ranting. Thank you for reading.
-------------------- Kristen Mays Landing, NJ Posts: 6 | From Mays Landing, NJ | Registered: Jul 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Did the LLMD test you using an IGeneX WB?
Also, it's a clinical diagnosis ..... the labs only support the diagnosis. Are you sure it's an ILADS LLMD? Doesn't sound like it ... an ILADS one would test you further .....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi MrsDevlin,
I agree with sixgoofykids. I think an ILADS LLMD would be the best way to go.
Your symptoms seem suspiciously Lyme-like to me. Plus you have had tick bites.
An LLMD will evaluate your health concerns and make a diagnosis clinically and then probably order testing through Igenex. Co-infections could also be causing some of your problems.
If you need help finding an LLMD please go to "Seeking a Doctor" and post a request. Someone will be along to give you a referral.
Best of luck to 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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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes MrsDevlin, I agree with them. The CREEPY CRAWLIES are the nerves being demylinated by the lyme infection and
is a dead giveaway to me. It is so hard to describe this sensation to someone who has never had it but
so easy to be believable to someone who has. Seek a LLMD here by posting in Seeking LLMD. They will
help you find a Dr. to treat.
-------------------- 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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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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
posted
Thank you all SO much. I actually got the name through the Lyme Disease Association on their doctor referral site. I'm headed over to post on the other board to seek a new doctor. THANK YOU again!
-------------------- Kristen Mays Landing, NJ Posts: 6 | From Mays Landing, NJ | Registered: Jul 2009
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Because Lyme can be a complicated illness, I do think you should seek multiple opinions.
Your test results for lyme do raise some questions, and in conjunction with a LLMD or (if one of your current physicians is willing to work with you) I suggest that you retest for Lyme at a different lab.
Your lyme antibody titer (the AB) is 1:66. This is a general test for lyme antibodies; if they are 1:40 or higher, this is considered to indicate a high amount of antibodies in the blood. However, these could be antibodies to other pathogens so that is why the test is followed up by a Western Blot (WB) which is more specific.
It looks like the lab you went to tested only for 3 IgM proteins (or bands, since they look like bands on the test). If this is so, it is not an appropriate test since (1) only 3 bands were tested, and (2) no IgG bands were tested.
IgM and IgG are two different kinds of immune proteins the body forms. IgM proteins are formed early in an infection, while IgG proteins are formed later. If you have had the infection for a year, then it is reasonable to expect that you would have a stronger IgG response, so not testing for those is inappropriate. Some doctors mistakenly think that a later-stage infection should have no IgM positive bands because of this; however, it has been shown that the bacterium causing lyme disease is able to "shuffle" the antigens on its surface over time, and this can cause a sustained IgM response even late in an infection. Nevertheless, a test which does not include at least 10 IgG and IgM bands is essentially no test at all.
Did the test results include any information for additional IgM or IgG bands? If not, then you should be retested using a better lab test. IgeneX is a lab specializing in tick borne infections and you will find plenty of information on what tests to order if you search for that term.
Some doctors criticize this lab because they have a higher rate of positives than other labs. However, this is because (1) they test for a wider array of bands than other labs; (2) they use both their own benchmarks for positive tests, which are less stringent than CDC criteria -- however, they do report both. (Contrary to the beliefs of some doctors, many people do indeed receive "negative" tests from IgeneX.)
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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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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