posted
Posting this, written by Dr C of Missouri for the benefit of everyone. This was written around 1999 or 2000. There is an updated version below.
<font size=4> Please note that "equivocal" is the same thing as "IND" or "indeterminate."</font> -------------------------------------------------
Explaining Borreliosis (Lyme) Western Blot Tests
The Western blot is a type of test that is conducted for detection of borreliosis (Lyme), but is also used to test for infections other than borreliosis.
Borreliosis is a more accurate name than Lyme disease for this infection. Several different Borrelia may cause a similar clinical pattern in this disease.
Old Lyme is a town in Connecticut, not a disease. Borreliosis is the name that should be used.
There is no universal agreement on what defines a positive Western blot.
Good laboratories use different criteria to interpret borreliosis blots. At the 1999 international borreliosis and tick-borne infection conference, Sam D****, M.D. lectured.
Dr. D**** is a full professor of Infectious Disease at Boston University School of Medicine. He said that if a patient has just one borreliosis-associated antibody on their Western blot, you may assume they have borreliosis. Richard H*****, M.D. said the same thing in his lecture, at that same conference.
Research I presented in 1998 involving over 400 borreliosis patients, showed an 87% response rate to antibiotics. This was if they had one borreliosis-associated antibody on their blot.
So if there is enough suspicion that Lyme borreliosis is the cause of a patient's symptoms, so much so that a Western blot is ordered, then if only one borreliosis-associated antibody is found, it is significant!
Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!
So in the trenches of day-to-day medical practice, false positive borreliosis tests are not an issue. In retrospect, those 2 patients that did not respond to antibiotics may have also had babesiosis.
In my practice, many borreliosis patients also have babesiosis, another tick-borne infection that causes the same symptoms as Lyme borreliosis.
Babesiosis is caused by a protozoa, which is a different germ type than a bacteria, virus, fungus or yeast.
The placebo effect would not explain a 99% response rate. Those borreliosis associated antibodies should not be there, in patients with symptoms.
A placebo is like a sugar pill, that has no effect. A placebo effect occurs because patients believe in the pill they are taking, even though it is a sugar pill. The human mind causes the response. Placebo effects should more likely be about 20-30%, not a 99% response rate.
False negative test results are the real problem in diagnosing borreliosis. Research has shown that you have to do the right test (the Western blot), done at the right laboratory (one that specializes in testing borreliosis), and done the correct way (shipped express delivery early in the week).
The right test to screen for borreliosis is the Western blot. Research I presented in Bologna, Italy in 1994 at the international borreliosis conference showed this.
Other screening tests, such as the IFA, EIA, ELISA, and PCR DNA probe were often negative when the Western Blot was positive!
Other doctors like myself who diagnose and treat a lot of borreliosis patients, go straight to the Western blot as their screening test.
Medical articles abound stating that it is best to do a screening test, such as an ELISA, and if it is positive, then confirm it with a Western blot.
But the ELISA is often negative when the Western blot is positive so, the right test is the Western blot.
It lets you see exactly which antibodies are present. The "right laboratory" means one that specializes in borreliosis testing.
In the past, I have done head to head comparisons with 3 different regular labs. Western blots were drawn and sent on the same day to 2 different labs.
The labs that specialize in borreliosis testing typically found borrelia-associated antibodies, that the regular laboratories missed.
If these specialty labs find a borrelia antibody, I trust it to be significant, because patients respond to antibiotics.
You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.
Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens.
Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species.
In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria.
Compare it to the old story of different blind people touching an elephant. Based on the part of the elephant each one touched, each person had their own perception. Likewise, the antibodies attach to different and specific parts of Borrelia burgdorferi.
Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons.
To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the numbers, 18 through 93, on the test result form, is a part of the bacteria.
Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.
Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot.
If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part.
When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter.
In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.
If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.
Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics.
Sometimes multiple antibiotics have to be tried before the patient feels better. Antibiotics may actually help with the laboratory diagnosis. But patients need to be off antibiotics about 10 to 14 days before the Western blot is repeated. This sounds like a contradiction.
Antibiotics may help convert the test to positive, but patients need to be off antibiotics when the specimen is drawn.
It is well documented in medical literature that the presence of antibiotics may cause false negative borreliosis testing. Therefore, your system should be free of all antibiotics for an accurate blot result.
When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside your white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested.
What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system.
That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.
If a borreliosis Western blot is going to be positive, it is usually the first one that is positive. The second blot is the next most likely to be positive, and so on, until the fifth blot.
After that, the curve levels off for conversion to positive. This is based on research I presented in Bologna, Italy in 1994. Some patients had borrelia-associated antibodies finally show on their tenth Western blot! Two Western blots from a reliable lab usually gives the answer.
If a third test is needed, a Lyme Urine Antigen Test (LUAT) is done instead of a third Western blot. Positive LUATs correspond very highly to patients getting better with antibiotics.
False positive LUATs have not been a problem in my practice. The LUAT finds the actual antigen (Borrelia burgdorferi itself), so arguably it should be the test of choice, but the Western blot is rn6re widely accepted, even though it looks for the antibodies against Borrelia burgdorferi.
The presence of antibodies are indirect evidence of an infection, not direct evidence like shown in the LUAT. On the Western blot test result form, please note what is "considered positive" and "considered equivocal." Equivocal is another way of saying suspicious or almost positive.
Below this are the ASTPHLD/CDC recommendations. The CDC stands for the Center for Disease Control. I have been in attendance at the international borreliosis conferences when the CDC said their recommendations are for disease surveillance, not day-to-day clinical medical practice. I am not in the business of disease surveillance. My job is to try to help sick people.
The CDC recommendations do not include the 31 and 34 Kda bands of the blot test. These two bands correspond to outer surface proteins A and B respectively (ospA and ospB).
In the world of borreliosis, these are two of the classic hallmark Lyme antibodies. But the CDC does not even have them in their recommendations.
You may see why I and other borreliosis clinicians do not agree with using the CDC criteria in everyday medical practice. Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.
These bands may be produced by Borrelia burgdorferi, but are not nearly as specifically associated with Lyme borreliosis as the starred bands. These starred bands are classic hallmark borrelia-associated antigen-antibody complexes.
An example of the CDC's criteria of a blot test, is if a patient has the band pattern of 41, 45, 58, 66, and 93, the CDC would call it positive. But if a patient has a 23-25, 31, 34, and 39 band pattern, they would call it negative.
This is despite the fact that this second pattern of antigen-antibody complex bands is much more specifically associated with Borrelia burgdorferi than the first pattern.
As you can see, borreliosis is very controversial. It would be alarming if I was the only clinician who thought that the CDC recommendations should not be used for day-to day medical practice.
Many borrelia clinicians do not use the CDC criteria. This is obvious by the fact that the IgX laboratory uses different criteria for positive. Again, in my opinion and others', even one borrelia-associated antibody is significant, if symptoms exist.
The classic triad of symptoms for borreliosis is fatigue (tiredness, exhaustion), musculoskeletal pain (joints, muscles, back, neck, headache), and cognitive problems (memory loss, trouble concentrating, difficulty remembering what you read, depression, disorientation, getting lost).
But there are about 100 symptoms on the borreliosis questionnaire I use. Borreliosis may mimic or imitate virtually any disease.
Patients often tell me that other physicians they have seen use the CDC recommendations. This is unfortunate, in my opinion, since these physicians are not in the business of disease surveillance, like the CDC is.
But I am biased. After seeing patients with borreliosis since 1988, attending many conferences, talking with experts, and doing research on borreliosis testing, there is absolutely no question in my mind that physicians need to not blindly accept any recommendations.
One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.
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. In regard to the outer surface proteins, think of it like the skin of a human.
On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C.
The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).
At the international borreliosis conference in Vancouver, British Columbia, I asked her personally about the 30 kDa band. She told me it was the same as the 31 kDa band (osp A).
When you have the opportunity to talk to borreliosis experts, this helps in assigning significance to findings, on an imperfect test. As a medical doctor, I am stating all of this with no axe to grind, no professorship to protect, and no preset opinions. Patients, personal research, and conferences have helped me interpret the borreliosis medical literature in regard to testing.
Nobody would like to have available a bullet-proof, 100% reliable Lyme borreliosis test more than I would. But we must use what is currently available. I always welcome second opinions.
----------------------------------
Here is his update written sometime around 2005.
When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have Lyme borreliosis and the testing is stopped right there.
Screening tests that are positive are often followed by a test called the Western blot. The blot is a ``confirmatory'' test, as opposed to a screening test.
(Blots are performed for other infection -- it is a type of test, not a test uniquely for the Lyme bacteria.)
Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel.
Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the Lyme bacteria will bind to those exact parts that are embedded in the gel.
When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as +/-, +, ++ or +++ depending upon the intensity or darkness of the band.
Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa).
Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
It's important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive.
I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.
For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to ``screen'' for borreliosis, even though it is a ``confirmatory'' test.
Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.
Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the Lyme bacteria, then there was a 97 percent chance they would feel better with antibiotics.
Consequently, I tell my patients not to worry if the laboratory interpretation is ``negative'' or ``equivocal,'' if they have antibodies that are significantly associated with Borrelia burgdorferi.
One thing doctors are taught in medical schools is to treat the patient, not the test result.
If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored in my opinion, even if the `official' interpretation is negative or equivocal.
Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease.
Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centers for Disease Control (CDC).
Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. In my opinion, surveillance criteria should not be used in day-to-day clinical medical practice.
Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC's surveillance criteria.
Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB).
In fact, the 31 kDa band is so tightly associated with Lyme borreliosis that a vaccine was made from that outer surface protein.
In other words, I believe that criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have Lyme borreliosis.
Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded.
(Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.)
Same day head-to-head comparisons of borreliosis Western blot results revealed that reference laboratories do a better job of finding antibodies against Borrelia burgdorferi than regular laboratories.
This raised the obvious concern that the reference labs might be overdiagnosing patients with borreliosis.
That is one of the reasons why I researched those 700 patients. However, the false positive rate was just three percent. In my opinion, reference laboratories do not over-diagnose borreliosis.
False negative test results, on the other hand, are a much bigger problem, in my experience. Negative Western blots convert to positive in 18 to 24 percent of cases, if four weeks of antibiotics are given, and then the patients go off antibiotics for 10 to 14 days before the repeat Western blots are done.
In other words, a false negative Western blot converts to positive in about one out of five borreliosis patients. This is a much greater problem than a false positive rate of only three percent.
Coinfection testing may depend upon where you live on planet earth. I talked to one medical doctor from New England that was concerned about getting too many positive test results for bartonellosis (cat scratch disease).
This physician was concerned about false positives. Yet I have not had a single positive yet.
Research by Greg McDonald, Ph.D. has shown that there is a different borrelia in the Midwestern U.S.A. When Dr. McDonald used a PCR primer that would amplify any strain of borrelia, he obtained positives from biopsies of bulls-eye rashes caused by tick bites in patients from Missouri and nearby states.
However, if Dr. McDonald narrowed the PCR primers to amplify only Borrelia burgdorferi, Borrelia lonestari or Borrelia andersoni, the results were negative.
In other words, the Midwest has a different borrelia. It has been referred to as Borrelia ``confusiosis,'' but one of these years when it is finally characterized fully, this Midwestern borrelia will probably be known as Borrelia mastersi, in honor of Edwin Jordan Masters, M.D. and his extensive research.
Pathologists who use a microscope to examine bulls-eye rash biopsy specimens from Midwestern patients observe significant and consistent differences when compared to biopsies from New England patients.
The diseases and their rashes are similar, but there are definite differences. This is why borreliosis or Master's disease is a better term than Lyme disease.
Another feature of Midwestern borreliosis is the inability to grow Borrelia burgdorferi from patients with Lyme borreliosis. In New England about five percent of cultures grow Borrelia burgdorferi from borreliosis patients.
There are other borrelia* that cannot be grown in culture media. The bacteria that causes syphilis has never been grown in culture media, even though this infection has been known and studied for several generations.
It should not be surprising that the Midwestern borrelia cannot be grown in culture media yet. When it is, knowledge of this infection will increase tremendously.
James Oliver, PhD, who is a very highly respected entomologist, has successfully cultured Borrelia burgdorferi from over 60 ticks collected in Missouri.
Why human cultures are negative and tick cultures are positive remains a mystery. Still, there is no question but that there is a Midwestern borreliosis.
The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia.
It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative.
To protect patients' pocketbooks, I rarely test for tick-borne coinfections. If the tests were reliable I would be more inclined to order more. In general, when potential coinfections are targeted with antibiotics, most patients get better.
At least three possibilities exist to explain patients feeling better with antibiotics. It could be that an antibiotic that targets a potential coinfection such as babesiosis may actually be killing the Lyme bacteria as well.
Or it may be that a negative test for a coinfection was falsely negative. And finally, there may be some unknown germ that the patient has that responds to the antibiotic.
I tell my patients that regardless of why the antibiotics help most borreliosis patients, the benefits of antibiotics outweigh the risks.
My greatest concern is untreated borreliosis, not the potential side effects of antibiotics that target tick-borne infections.
Specimens for borreliosis Western blot testing should always be express-mailed to the laboratory. Antibodies against the Lyme bacteria can clump or bind together and give a false negative test result.
Express-mailing specimens lessens the time in which this could happen, which in turn increases test accuracy.
If your specimen sits around for several days (or if a screening test is ordered instead of a Western blot, or if a regular lab is used instead of a reference lab) then you might be given a false negative test result, which in turn could result in a false sense of security.
Testing in my office consists of a Western blot that is express-mailed to a borreliosis reference laboratory.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks for reposting this lymetoo :-)
I guess my IND does mean something on band 31 IGM with positive 41 and the 39IND on IGG with positive 41 and 66.
I just wish the IND was a big ++
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Thanks for the post. My question is when he says that 99% of the patients responded to antibiotics, what does he mean by responded. I know it does not mean cured. Just curious what his definition of a response is. Hiker
P.S. I will ask him at my upcoming appoinment.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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The mimic part may be because many other illnesses with whatever name they gave it from FM/MS/ALS/ME/Parkinson's, etc.
Just may be related if they connected the dots since we all start out same.
Like a tree the mycoplasma just may be the root then it branches off in diff. directions wherever is weak & can creep in.
No diff. than 100 kinds of cancer. Branches many diff. directions or hits specific parts of body. Basic beginning symptoms then branches off in diff. directions such as lymphoma,melanoma, bone cancers etc, from fast to slow moving.
Or Arthritis.
Or heart illnesses, Start same type symptoms then branch off.
Hmmmmmm, IMHO.... What is your take folks???
Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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posted
Hi Tutu, I'd really like to print this off, but is it possible for you to break up the LONG paragraphs into smaller ones for us neuro lymies? The rest was easy reading, but I got lost in every LONG no break paragraphs.
Thanks for your consideration and editing this for us all. Outstanding info here.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Updating this thread with some citations to BAAAD testing. If you gotta stick out your arm, make sure your lab is worthy.. Stick with IGeneX or another LLMD-recommended lab that specializes in tickborne disease testing. Lyme testing is hard enough; don't give a bad lab a chance to mess it up for you.
Michelle ___________________________________
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. S of Florida (publishes free articles at personalconsult.com). --------------------- ***Note from Michelle: actually bands 18 and 30 are considered specific to Lyme as well.
posted
Posted elsewhere by long-time member "Sammi"
9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
^up^ Where it's easy to find.
Thanks tootsie!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Wow thanks, this answers alot of my questions on another thread I recently posted. Good read.
So this guy thinks bands 66, and 30 are also lyme specific?? Interesting as both of those came out positive for me.
Posts: 170 | From Vancouver | Registered: Apr 2006
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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
I'd like to know in the many patients Dr. C says responded to abx, how long were the patients on abx before they responded? Months, years??
Posts: 310 | From TN | Registered: Jan 2007
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bettyg
Unregistered
posted
fyi, tutu, i sent your link to lou b asking him to FEATURE it at top of medical since it's asked about every day here on the board.
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Good thinking and thanks Betty! I was thrilled to see this up top where I can find it without a search. Cool!
I think this is one of the most referred to threads and not having to do a search for it is great. Thanks miss Tutu, too, too!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Wow Lymetoo! That was very informative! Thank you. I'm afraid the one band that was strong for me on my wb was band 41. That's kinda scary! I am currently under Dr. M's care, and believe he has a firm grip on what's going on, but I still feel the need to understand as much as I can.
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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Now, let me tell you about the real DARK SIDE of the steere/dressler criteria.
These criteria were designed to enable one thing: a vaccine trial for the OspA vaccine. That's why the band to OspA at 31 KdA was left out of the criteria for positivity, even though it is very specific to Bb.
Why then was it necessary to distort the importance of the flagellin response? I'll tell you why. It's because they had to test the vaccine in an endemic area. And a significant percentage of vaccinees were ALREADY SHOWING seropositivity to Bb exposure and possible latent/asymptomatic infection as manifested by the 41 band and maybe a few others, but not enough to be 'positive' by CDC standards. {remember, in europe 3 bands = I have lyme disease, in the US, 3 bands = normal}.
In other words, they had to run a vaccine trial on a group of people who had already been exposed or infected by Bb. If you utilize scientifically honest criteria, then YOU CAN'T DO THE TRIAL, BECAUSE A LARGE NUMBER OF YOUR VACCINEES ARE ALREADY INFECTED OR EXPOSED BEFORE THEY EVER GET THE VACCINE.
So by using less restrictive criteria, you create a situation in which there is no way to distinguish whether or not the vaccine is effective. Basically, a lot of people got a worthless vaccine.
this paradigm...which plunged thousands of vaccinees from infected areas into an unknown realm {what happens when you vaccinate someone who has already been exposed, or is manifesting late stage latency} and MAY have been the reason we saw so many reports of adverse reactions.
Individuals who were carrying latent infection, as manifested serologically by a limited ab response, these people were CUT OUT of the medical community, and they had to pretend nothing was wrong with them. And wrt lyme encephalopathy, Bb protein expression primarily in brain years after initial exposure, that has never been studied adequately to know what is signficant and what is not. All we really know is that flagellin is constitutively expressed even in brain infection.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
My primary care doc is Dr. M, who taught Dr. C...
Dr. M will not tell you, you have Lyme, he will say you have Borrelia burdorferi which is a relapsing fever spirochete.
Dr. M has been persecuted by the Lyme Crooks (Steere/Barbour/Fekrig+so many more) for many, many years, until he PROVED them all WRONG. They were saying we don't have infected ticks down here...he found them, and even found a NEW strain. He went down in history and they named the new strain after him. He made the Steere/Barbour camp look very FOOLISH....LOL...tucked their tails between their legs and never messed with him again!
Dr. M's motto: "Data over Dogma Evidence over Egos Patients over Politics" E.J.M
I had several T-shirts made with his words, lime green of course with black letters. I thought he was going to tearup when i gave him one.
He is working on a new paper to be published soon, on Tuleremia...i can't wait until the studies are done and it's published!
He truely is a master, and i wish everyone who is sick could be seen by him. He surely does care about us all. He never will give in or up on finding a way to make us all better!
posted
coming in late to this thread, but am new here. This is very interesting info, but when I go to this Dr C's site, he is selling products as well. I'm always leery of this
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Peacesoul
Unregistered
posted
And maybe all the other lyme literature and my LLMD are wrong, but I was informed that line 41 is not specific to lyme. It can be + if you have even a sinus infection!
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posted
Hi Iam new to this forum. I have a question about the western blot test. In 1995 I had this test done and the only band that was positive was 41 KDA. I was told I do not have lyme. In a nut shell because of a low b12 level and blurred intermitten vision I had an MRI done. It should lesion on my brain. I just had a lumbar puncture to test for MS, Lyme and other demylating diseases. Dose have this one band postive mean a may really have had lyme way back in 95?? I have many many lyme symptom. I should be getting the results back from the spinal fluid on Monday.
Posts: 23 | From n.y. | Registered: Nov 2007
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It's best not to post on this particular thread, as no one will notice it. I just HAPPENED to see that there were 27 replies here instead of the usual 26!
Make a new thread in Medical Questions and/or send me a PM.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Thanks so much Lymetoo for posting this information.
I had a western blot for lyme performed by (KP) last year and they said it was negative. I'm going to push my primary to go over the lab results for each of the bands they tested. I'll post what I find in their lab results. Not that I think it is accurate, more as reference to the lab work done. I'm also going to take the write up done here to show it to her. It might be educational to her, hopefully.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Thanks so much Lymetoo for posting this information.
I had a western blot for lyme performed by (KP) last year and they said it was negative. I'm going to push my primary to go over the lab results for each of the bands they tested. I'll post what I find in their lab results. Not that I think it is accurate, more as reference to the lab work done. I'm also going to take the write up done here to show it to her. It might be educational to her, hopefully.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
This is an excellent thread TuTu!!!
I was thinking that perhaps people reading this might be having troubles as a result of faulty tests and/or faulty interpretations.
Tincup posted a thread recently that might be helpful to them. It contains some Hopkins info, with some IDSA names, that can be used as ammo for battles with doctors, insurance companies, etc... Topic: Trouble getting diagnosed by blood tests?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I have a question maybe. I can't remember where I read this but band 31kDa signifies that the individual has been infected for over a year. Again correct me if I'm wrong but 31 was showing up in only 13% of the people who were positive for under a year. Come to find out 31 showed up in 87% of the people who had lyme anywhere from over a year to 13 years. Anyone else find this article? There's so much info out there it'll make you dizzy.
Years ago they were able to cure polio, (remember standing in line every year for shots, sugar cubes) pnemonia, rhematic fever, scarlet fever. I wonder if we'll ever see those days again.....
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I just came upon this info posted by Marnie on a thread from the old site & thought it was interesting, since Bb eats up our Magnesium.
quote:Marnie - posted 01 February 2004 06:55
The Western Blot test measures ANTIBODIES/immunoglobulins that your body MAKES in RESPONSE TO a specific bacteria.
Why is testing inaccurate (Western Blot)?
"The levels of antibodies (immunoglobulins) decrease in experimental animals (mice, rats and hamster) by up to 60% when the supply of magnesium is significant reduced. There is a direct correlation between magnesium deficiencies in rats and reduced immune defense against allergic reactions and cancers, in particular leukaemia and lymphomas." http://www.1stvitality.co.uk/az/magnesium/
The above website has changed, so go to this pubmed abstract instead:
Proc Soc Exp Biol Med. 1975 Mar;148(3):620-4.
The effect of magnesium deficiency in mice on serum immunoglobulin concentrations and antibody plaque-forming cells.
Elin RJ. Therefore, magnesium deficiency has profound immunosuppressive capabilities in mice by significantly reducing the number of antibody synthesizing cells and serum immunoglobulin concentrations.
PMID: 1093189 [PubMed - indexed for MEDLINE]
E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions 1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+ 2. Mg is required for synthesis of proteins, immunoglobulins included 3. Antibody-induced complement activation is Mg dependent 4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte http://www.mdschoice.com/elements/elements/major_minerals/magnesium.htm
Our own antibodies are "damaged" (Fab portion). Look at what restores their bactericidal (killing) effect:
Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.
The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but is dependent on the presence of Ca2+ and Mg2+.
Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.
The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.
PMID: 9125579
A ``novel form of antibody-organism interaction?'' I don't THINK so! Read once again the above explaination of one of the many jobs of Mg. This has been KNOWN for a long time.
If you want a more accurate test, probably taking some Mg (and with it a SMALL amt. of B6)or better yet...CoQ10 with soybean oil and vitamin E in it (read the back label)...will help.
The above is part of my post, "In a nutshell part 1"
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Lymetoo, I also appreciate your posting this information written by Dr. C. Can you provide it's original source? I don't see it on the MD's website. A PM would be great if it's not appropriate to note here. Thanks
Posts: 3 | From Utah | Registered: Jan 2008
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Here is an article by Tom Grier, explaining the importance of OspC (band 23-25), and a history of how they left it out of IDSA: (actually it is better to read the whole article)
n 1994, the Association of State and Territorial Public Health Laboratory Directors, under a CDC grant, decided that there should be consistency between labs reporting Lyme disease Western Blots, and that a specific reporting criteria should be established.
The consensus committe, chaired by Dr. Michael Osterholm, Ph.D., MN, set nationwide standards for Western Blot reporting.
This sounds good, but one could argue they made a bad situation worse.
Prior to the hearing, virtually every lab had accepted bands 22, 23, 25, 31, and 34 kDa as specific and significant, and reported them as positive for exposure to Borrelia burgdorferi.
Not only are these bands specific for Borrelia species, but they represent all of the major outer surface proteins being used to develop the Lyme vaccines.
The committee, without any clear reasoning, disqualified those bands as even being reportable.
After the consensus meeting, those bands were no longer acceptable.
The result was that what had been a fair-to-good test for detecting Lyme disease had now become poor, arguably useless.
Many scientists have questioned these new reporting criteria, and several wrote letters of protest to both the committee and to laboratory journals.
Many labs stopped reporting the actual bands and instead, simply reported the test as positive or negative, thus preventing any further interpretations. (90)
How badly did the Lab Directors bootstrap this test?
The following is an analysis of the new guidelines presented as an abstract and lecture at the 1995 Rheumatology Conference in Texas, chaired by Dr. Alan Steere, MD. (1995 Rheumatology Symposia Abstract #1254, Dr. Paul Fawcett, et al.)
This was a study designed to test the recently proposed changes to Western Blot interpretation by the Second National Conference on Serological Testing for Lyme Disease, sponsored by the CDC.
The committee proposed limiting the bands that could be reported in a Western Blot for diagnosis of Lyme disease. Out of a possible 25 bands, 10 specific bands were selected as being reportable.
An lgG Western Blot must have five or more of these bands: 18, 21,28, 30, 39, 41,,45, 58, 66 and 93 kDa.
An lgM Western Blot must have two or more of the following three bands: 23, 39, 41.
Conspicuously absent are the most important bands, 22, 23, 25, 31, and 34, which include OSPA, OSP-B and OSP-C antigens - the three most widely accepted and recognized Bb antigens.
These antigens were the antigens chosen for human vaccine trials.
This abstract showed that, under the old criteria, all of 66 pediatric patients with a history of a tick bite and bull's-eye rash who were symptomatic were accepted as positive under the old Western Blot interpretation.
Under the newly proposed criteria, only 20 were now considered positive. (The number of false positives under both criteria was zero percent.)
That means 46 children who were all symptomatic would probably be denied treatment! That's a success rate of only 31%.
*Note: A misconception about Western Blots is that they have as many false positives as false negatives. This is not true. False positives based on species specific bands are rare.
The conclusion of the researchers was: "the proposed Western Blot reporting criteria are grossly inadequate, because it excluded 69% of the infected children."Posts: 96222 | From Texas | Registered: Feb 2001
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Oh me..did I mess up something? Would not surprise me at all. Did I get the 23-25 mixed up with the 31 in the Dressler criteria?
And is the Dressler criteria what the Dearborne was about?
Does anyone know what day it is?!!
Time to check the history books I guess!
One thing...the later Dr. C comments (2005) added the 18 band, which was not on the earlier/older comments...then, it was an unknown or a questionable.
///This was a good thread to re-read.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Got alot of questions here.........my 24 year old daughter has been fatigued, lots of headaches and increasing moods swings in the last yr and a half. She is in Nursing school so there is a BIG STRESS factor there anyways. Soooo.......she fininshed this semester mid-May and started to have flu like symtoms...achy,tired,swollen lympth nodes and then her toungue went numb and eventually went to ER with Bells Palsey. They did all kinds of blood work..everything but Lymes. Even gave her a CAT scan that came back normal. They sent her home with predisone for the inflamation and she was to follow with her primary
DR. Did the Lymes and her tider score was 2.1. Her symptoms got worse and she went to a ID DR. the DR said that they did not believe in chronic lymes and that a person could get re-infected over and over again. They did a Western Blot(this is about 5-6 weeks after onset of symptoms)They said it was negative today..something about a 2 out of 10 IGG and 1 of 5 IGM. She did get antibotics(dycycline)from her primary about 3 wks ago. she is still very tired and forgets(almost spaced out) alot of things, headaches and joint pain.
Soooo...my questions.... are we doing the right things for her does she need more testing. What happpens when she finishes her meds? i have know idea what those test scores mean?? If anyone has any info or suggestions please e-mail me @ [email protected].
thank you
Posts: 3 | From Hurlock,Maryland | Registered: Jun 2008
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posted
PSSS.....She had no bulls-Eye Rash and dosen't remember a tick bite as far back as 2 yrs ago.
Posts: 3 | From Hurlock,Maryland | Registered: Jun 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
You will get more replies to your questions if you put them into new posts. Most members do not look at this post regularly.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I've found a new site on tests that you should check out. Site www.mylymelab.com They are promoting CFR'S antigen test at this time. Go to testing-what I found interesting is that they show the problems with the antibody tests and with the antigen test that they are promoting. I called and they are going to have a forum so patients can talk and get information about tests. Said wanted people to have good information on test whether they used CFR'S test or not. I'd say that's fair and balanced. Very good site.
Posts: 2 | From florida | Registered: Mar 2008
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posted
A note on "breaking up posts": To supply a blank line between paragraphs helps readability, if you can manage it. Especially on this "board", since indentation used to be, and may still be, lost, in the program the Lymenet uses.
But many folks with lyme are in a state where they have a hard time remembering to do that, or remembering that it was helpful for some to do that. They may have a hard time getting it typoed in any form!
If smeone doesn't manage to break up the text, it may help some of us who are having a hard time reading to do the following: (NOT too hard!):
1) open "wordpad" or "simpletext", or "textedit"- whatever generic text editor your'puter has.
2) Go back to the "Lymenet" window and select the text you want to read easily, and choose "copy" from edit menu.
3) click on the new text document you just opened, and choose "paste" from edit menu. (Then you might want to save the file just to make sure you don't accidently lose it).
4) If it might help select the whole document and increase the text size. (probably under a "text" menu, but depends on your text editer).
5) As you read, you can put in blank lines anywhere you feel it would help. This "active reading" may help in any case. You could even double- space the whole thing as you go.
Then you could even save and/or print important posts (in a "lyme info" folder, for example) that have been make more readable through the steps above. (it's good to date them, or organize into subjects etc.)
Anyway, as a Lyme Disease, as well as Head Injury, survivor with vision problems, I thought I'd throw out some ideas for anyone having a hard time.
Now, I go on to "about Lyme tests":
When I first got lyme, they gave me a blood ...'test'... (yeah, right) for lyme when I went to a "regular" clinic with a bullseye rash after multible tick bites. But they told me the test came back "negatve" 2 months later the diseases hit me symptomatically (despite a short course of doxycycline!), and they gave me another, um, uh, ...'test'... for lyme.
It was STILL supposedly "negative". I had all the classic symptoms of lyme, as well as of babesia and ehrlichia (103 degree temp, joint pain, nausea, night sweats, etc.)
After another short course of doxy failed to cure me (made it worse; I only had the abx long enough to have the herxheimer reaction resulting from lyme bacteria die-off), these jokers still told me "there must be something else going on".
I eventually managed to link up with others suffering from lyme and managfed to find an LLMD Lyme doc. But by that time I was getting neuro symptoms and was a complete wreck physically! It took me well over 2 years of intense "lyme-literate" treatment, but I did manage to get over it. I hope you can get better treatment and avoid any more mis-steps. Time is of the essence for you at this point. DaveSPosts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Have you seen what I recently wrote in the General Discussion area as Just My Opinion on Lyme... ?
Would love to see your comment there...
Oh and by the way, today was my second LLMD Doc visit, and we talked for about an hour about the politics of Lyme, by PM message I can tell you what he said... it was amazing to hear his views, this man is truly on our side.
He is a Scientific Advisor to the Lyme Disease Foundation.
(oh and if you could post a reply to my question here in the Medical board about band 23 only vs band 23-25 confusion)
Thank you dearly for your genuine effort to help and care for us all.
I wish you only the best of Health !!!
Best regards, Eric
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
If someone could PM me with a contact name and number for the "Dr C of Missouri " mentioned at the beginning of the first post of this thread I have an LL M.D. that wishes to contact him.
Thanks.
Posts: 135 | From Orlando, Florida | Registered: Feb 2009
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bettyg
Unregistered
posted
monster, check your profile for pm w/info from me!
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bettyg
Unregistered
posted
newbie just posted this, and i looked at above and NOWHERE was an answer to this that i found .... felt it needed to go with this here and hopefully we can get an answer for them/US
Astericks on Igenex report ****************************
ladyjenie Member Member # 21098 posted 05-09-2009 12:33 AM
Do the astericks to the left of the band numbers on the Igenex results have any significance?
I did a search and could not find the answer anywhere.
posted
I am pretty new with lyme disease but I did just receive my 1st IGX results and wondered the same about the stars...
what I finally concluded was...
the starred bands are the indicative bands showing infection of that specific bacteria more so than the non-starred bands...
meaning the non-starred bands don't have as much clout, diagnostically speaking...
If anyone out there with more experience and wisdom than I ( which would be many of you... ) can clarify this...
I too would like to know if I am on the correct track with this ! thanks !
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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posted
Wow, what a lot to take in but such valuable info here. Thanks to everyone who has taken the time to post this information! I have a lot more reading to do but I am thankful for every drop! Posts: 50 | From Midwest | Registered: Nov 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
IMPORTANT INFORMATION ON BAND 41:
Read this, very important for people to read who have only gotten a band 41 or wondered what band 41 could mean:
The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis:
1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: '' Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,'' since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means ``the spirochete remains alive throughout the illness.''
In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
This has been stated here in different ways.. just making sure this version is here also:
All I got was a 41band!
The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this. It cross reacts with other spirochetes. Maybe not.
Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection. The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test.
IgeneX considers it specific, it is marked with a double asterisk. I have reviewing the literature. Cross reactivity studies were done with syphilis. This does occur.
How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out.
What about other spriochetal diseases? Yes. It can cross react with leptospirosis, rat bite fever and relapsing fever. What did Steere have to say?
These diseases can be ruled out by clinical presentations. Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme.
I am quoting a paper co-authored by Allen Steere, circa 1984. Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no.
The primary dental spirochete is Treponema denticola. It is present in patients with periodontal infections. It is not particularly antigenic since it is protected within biofilms.
The DNA structure of this spirochete has beenworked out. It is very different from Borrelia.
The 41 band reacts to aflagellum protein of Borrelia, the Lyme spirochete. The flagellum proteins of T. denticola are quite different from those of Borrelia. They areantigenically different.
This was tough to find, but here it is: The WB or immunoblot bands that are specific for T. denticola flagelin proteints are: 38kd, 53kd and 72kd.
In fact, the best known dental spirochete does not react with the 41 band. Author after author continues to state that the Lyme 41 band may occur beause of cross reactivity with dental spirochetes.
It is always qualified with the word "may." There is no evidence to support this theory. All are in agreement that the 41band is specific for spirochetes.
The other spirochetes known to cause this cross reaction can easily be ruled out! To quote Carl Sagan: "When all the likely causes of an effect have been ruled out, then that which remains, no matter how unlikely it appears, must be the truth."
You only have a 41 band. The only question which has to answered is: How do you explain its appearance if it not due to Lyme disease?
from "Lyme Report"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
List of Western Blot bands and explanations (from various sources)
9 cross-reactive for Borrellia
12 specific for Bb (Lyme)
18 flagellin fragment (Lyme)
20 may be cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb. Can be an early band.
28 OspD. Specific for Bb (Lyme).
[23-28] Potential for Central Nervous System (CNS) involvement.
30 OspA- substrate binding protein- common in European and one California strain. Check for mycoplasma.
31 OspA, specific for Bb (Lyme).
34 outer surface protein B (OspB); specific for Bb (Lyme).
35 specific for Bb
37 FlaA gene product- specific for Bb (Lyme).
38 cross-reactive for Bb
39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands.
41 flagellin protein of all spirochetes. This is usually the first to appear after a Bb infection and is specific for all Borrellia. Can be positive due to relapsing fever, oral spirochetes and syphilis. Flagella or tail protein. Flagella is used to move Borrelia burgdorferi from point to point. Many bacteria have flagella. This is the most common borreliosis antibody.
45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis). Heat shock protein. This helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein- Check for viral infections
60 cross reactive for all Borrellia
66 Oms66- cross-reactive for all Borrelia, common in all bacteria- Check for E-coli
83 high molecular mass protein. Specific antigen for the Lyme bacterium. This is the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band.
93 an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Possibly the same protein as in band 83, just migrates differently in some patients.
NOTES:
When reporting bands, the reporting laboratory marks bands with the following indicators of intensity: - Not present + Low ++ Medium +++ High +/- Equivocal = indeterminate (present, but not as intense as the "Low" reading)
Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.
Some patients might have an IgM response at the time of the EM rash. The IgG response tends to start several weeks after infection and peak months to years later. In some patients, the IgM response can remain elevated- in others it might decline, regardless of whether or not treatment is successful.
Many Lyme disease experts believe it is a mistake to exclude 31 and 34 kDa antibody proteins from the list of significant bands.
Lyme disease patients may not test positive for exposure to B. burgdorferi because their antibodies to the organism are bound up in immune complexes.
An indeterminate number of patients with late or chronic Lyme disease are simply seronegative for unknown reasons.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I wanted to up this tread...it is very informative. Is there more newer interpretations of the bands I couldn't find?
Just getting drips and drabs from my igenex test(sadly...llmd won't talk with me before my appt)
I have strong 41 both igm and igg. and a few other positive bands and a few indetermiate... I have not seen the results yet. Interestingly, my PCP is pretty certain I have lyme based on this and my symptoms and my reaction to abx.... The LLMD I am seeing is not certain. I am hating the abx...so not sure who I want to believe. LOL I would love some more current interpretation if someone can lay their hands on a thread for me.
Posts: 1728 | From USA | Registered: May 2011
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Can anyone help me understand my son's Western Blot test? His test said band 23 reactive in bold letters. Nothing else was reactive.
Posts: 3 | From New Hampshire | Registered: Mar 2013
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Which lab did his test? Be aware that labs such as Quest and LabCorp do not list all the Lyme-specific bands that IgeneX does (bands 31 and 34).
Band 23-25 is a Lyme-specific band. Having this band is significant. How old is your son? He should be evaluated by a Lyme knowledgeable doctor.
If you need a doctor recommendation, you can post in "Seeking A Doctor."
Posts: 4681 | Registered: Oct 2000
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Many think that even just one Lyme-specific band is enough of an indicator for the illness.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Lymetoo: It says it's specific for borrelia. Dr C does not list it as one of the Lyme specific bands.
This thread is NOT about HIM....but just to ease your mind, he does not push products on people.
Who are these mysterious Dr. M and Dr. C? And which are the best labs for getting a correct positive result? I live in NYC area.
I'm new to all of this. I tested positive for the Lyme AB and then they said I was negative for Lyme because my Western Blot only came back with bands 41, 58. Also, positive for Ehrlichia IGM but equivocal for IGG so they said I am negative for that too.
Posts: 2 | From NY | Registered: Sep 2016
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