I have chronic joint pain and my doctor ended up testing me for Lyme disease using the western blot.
I was overall negative but was positive on one band - B.BURGODERFERI 41 kD (IGG).
When I was 7 years old I was bitten by a tick that was suspected to be carrying Lyme disease. My pediatrician put me on antibiotics for short period and that was that. Ever since, the spot in my neck where the tick bite is has a large lymph node that has been swollen but unchanged. It measures 1 cm (via CT scan of neck). The doctors are not worried because it is only one lymph node that is effected, even though it is large and protrudes through the skin.
My question is, I see soooo much controversy with getting a Lyme disease diagnosis I don't know if I should pursue this or not. I have had an MRI of my brain and there were no lesions.
Why would one western blot band be positive? I read some literature that said if one band is positive I should be very concerned. I use Quest Diagnosis and it seems they use the CDC recommendations of 5 positive bands is positive for Lyme disease. I hate to go into my dr's office and press him for further testing since he's the doctor.
What do you suggest as my next step? Thanks to all for reading and God bless.
Posts: 4 | From MD | Registered: Jul 2009
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posted
Quest is nearly worthless. For one thing, they don't test for several VERY IMPORTANT Lyme bands. Would you want to base your diagnosis on only half the needed info?
Quest is also not set up to do the very sensitive testing for Lyme.
I believe you need a lab well versed in Lyme testing upon which to depend.
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VITAL INFORMATION ON BAND 41!!!!
The number of people exposed is in the millions. The reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. The bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood.
They don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what Steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
This statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. It allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
Why? It's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. North American disease is different from European disease...lack of CSF antibodies, for instance.
A much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. The CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
Lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. If late disease was rare, we'd be able to get treatment. Unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
Think about this...Allen Steere wouldn't listen to Polly Murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call Fallon. Now, Fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated.
Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
Think about it. It's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
--- posted by Lymenet member Aligondo Bruce
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Lyme Testing: The Problems Rarely Appreciated
Many good and sincere physicians have been trained to perceive Lyme testing falsely, and some are even infectious disease consultants.
Lyme is a very sophisticated bug. It is partially related to the bug that causes syphilis. There are literally well over a dozen reasons for missing the diagnosis.
First, that bulls eye rash is a good sign you have it. But many other "bite" patterns or rash patterns can also be Lyme. In fact only 1/2 get any kind of mark or rash. And only 25-50% have the popular bulls eye rash. Sometimes a bulls eye rash is not on a part of you body you easily see and so is missed.
1. Lyme can hide by a number of ways from your immune system.
2. If your immune system is not tuned up and working very well you can be found fully negative on multiple lab tests.
3. Most tests for Lyme are antibody tests. Antibodies, also known as immunoglobulins, are proteins that recognize something foreign in the body like infecting bacteria and help remove it. The first and most common test your doctor usually orders is an ELISA antibody test. Again, if the Lyme is hiding well or your immune system is fair, you will come up normal.
Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).
In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease. But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people.
4. For some, the Lab is a place of perfect science. A place which has purely objective fact. In Lyme this is not valid. In one study, 55% of the labs could not accurately identify blood samples with Lyme, which led to the conclusion in a prestigious infection journal that: screening tests for Lyme disease are not adequate (Journal of Clinical Microbiology 35:537-543, 1997).
What About the Western Blot? Is That Definitive?
The Western Blot is merely another antibody test. However, it is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs.
Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples.
For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990).
1. Most physicians are taught to do the ELISA first. If that is positive then "confirm" with the Western Blot. The big confusion is that this is not a way to diagnose. It is the CDC's way of generally tracking the movement of Lyme in locations and states. It is not a way to determine whether you, personally, have Lyme!
If you use the Elisa first method with the confirmation Western Blot, you miss massive numbers of individuals with Lyme (Journal of Clinical Microbiology 34: 10-9, 1996). From this two-stage approach, you may have a sense that Lyme is entering your state at an increased rate, but that does not address your individual concern.
2. The CDC guidelines seem to express clearly to me that these two lab tests were never intended to be the final measure of whether you have Lyme. They report the main diagnostic criteria are what you report to your doctor and what they find on a physical, i.e., "clinical findings." (http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm)
3. Another government agency, the conservative FDA, has issued a bulletin explaining that a person may have active Lyme disease and yet may have a negative lab result. Meaning, diagnosis should be based on the history of what happened to you -- symptoms, exposure to the tick and physical findings (http://www.fda.gov/medbull/summer99/lyme.html).
4. Congress and the President have felt that negative labs have been used to keep people from needed treatment. United States Congress Public Law 107-116 explains that labs that are negative have no relation to Lyme diagnosis in a person and refers to the CDC that lab monitoring and testing with Elisa and Western Blot was "developed for national reporting of Lyme disease: it is not appropriate for clinical diagnosis."
Some bands may be fairly specific to Lyme: 12, 22, 23/25, 31, 34, 35, 37, 39, 83***
Finally, some feel the PCR test is the best test. Most PCR tests are performed by laboratory which almost never find it in positive people. However, the PCR test should be done by IGeneX, Medical Diagnostic Labs or another tick disease specialty lab, it is fairly useless. PCR testing can have a false negative of 30% in those with positive Lyme. It is also good to test the PCR from blood serum, whole blood and urine, so they have more ways to look for the illness.
These are excerpts from a book in manuscript by: Dan Kinderlehrer, MD., appearing on the website of Dr. Schaller of Florida (publishes free articles at personalconsult.com). --------------------- ***Note from Michelle: actually bands 18 and 30 are considered specific to Lyme as well.
------- posted by Michelle M .. lymenet member
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Band 41 can be activated by other things besides Lyme, like a bacteria that causes gum disease. I am not sure if you would know if you came in contact with it or not. There are supposedly other infections that may cause 41 to come up positive too.
But, Lyme is one of them.
If Western Blots were completely accurate, I would say your results would suggest it might not be Lyme. But, Western Blots can be finicky and unreliable.
I would look into getting testing done through Igenex if you are still concerned and suspecting Lyme. There should be info on this site as to how to get a hold of them.
You need to call them, tell them you just want the Lyme IgG and IgM Western Blots, and they will send you a kit in the mail. Then, you need a doctor to write the order to get the blood drawn.
From in the past when I had it done, you could call FedEX and they would come to your house to pick up the blood in the box, after it was drawn, that same day. I wouldn't trust the lab to mail it out, but that is just me. It needs to be mailed Mon, Tues, or early-ish Weds.
See where that gets you....because Igenex is supposedly more accurate. Above all, Lyme is a diagnosis that should be made by a professional, based on not just the labs, but symptoms. Sometimes the labs just won't come back positive, or sometimes they will turn more positive later in treatment.
I have also had good results using Stony Brook Labs. They are more likely to be covered by insurance, but the doctor needs to request that the "non-CDC specific" bands also be reported. Igenex is still regarded as the best though.
Sometimes the testing is more apt to come back positive if you provoke the Lyme with antibiotics for a couple weeks first.
However, not everyone has Lyme....so you just need to go with the info you have, and use the judgment of a Lyme specialist.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
You may want to consider having a Western Blot done by Igenex Labs. They are the only ones to trust when it comes to testing for Lyme antibodies.
A LLMD (Lyme Literate Doctor) is the best person to diagnose you if you suspect Lyme. It is entirely possible that it has persisted in your body since you were a child and now, for whatever reason, it is causing your joints to hurt.
The abx you were given as a child may not have killed all the bacteria. This happens unfortunately.
For a list of symptoms I like the one provided at www.canlyme.com. best. It's the one my LLMD uses too.
If you decide to pursue this further and need the name of an LLMD you can post a request in Seeking a Doctor. Someone will send you a referral.
In the meantime, reading anything and everything you can about Lyme is a good idea. This forum is the best!
-------------------- 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 all for your advice. I will definitely find a LLMD and make a visit - well worth a $25 co-pay!
I called my mom and pressed for more details. She stated she found a tick on my neck and removed it without problem. 1 week later a rash developed and she took me to the doctor who suspected Lyme disease and put me on amoxicillin (she thinks).
Do you know why the rash would disappear? The antibiotics, the disease changed, etc?
Posts: 4 | From MD | Registered: Jul 2009
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are you OVER 21? because then kids llmds are involved and NOT that many nationwide. i'll read your llmd post yet. just reading them as i come along since my pc was down 1.5 days so behind on welcoming folks and giving them good links to read about.
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
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If you have a Lyme rash, you don't need a positive test.
I would look at pictures of the rashes Lyme can cause online, to see if your could have been a rash from Lyme disease. I am not sure, but I think there are other Lyme rashes besides just the classic bullseye.
Maybe the antibiotics made the rash go away. The fact that it appeared a week after the bite makes it very suspicious of a Lyme rash to me. I would do more research into that, and bring it up to doctors you see.
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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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