My PCP rx Doxy 400mg. a day for 30 days and wants to see me in 6 weeks.
Based on test results - see doesn't think I have Lymes - but was willing to help me this far.
What do you all think? Do I have it or not? Should I see a LLMD even though insurance won't cover anything?
Peedie
Posted by sixgoofykids (Member # 11141) on :
If you have symptoms, I would see an LLMD. My LLMD treated my daughter on a weaker test than that.
It is not positive, but you do have IND on some critical bands. Plus, Lyme is a clinical diagnosis based on symptoms ... the test just supports the diagnosis.
Posted by Keebler (Member # 12673) on :
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If you have had a tick bite, if you have symptoms, even with one positive band, lyme could be present.
The "negative" stamp comes as CDC criteria. That is not the same as a negative test, just one according to their ridiculous criteria.
See a LLMD who knows how to fully evaluate for lyme and co-infections. In the meantime, you might want to get the new book by an ILADS doctor, Singleton, "The Lyme Disease Solution" - it's at amazon.
i say you have Lyme.. but i don't know your symptoms.
the IND's will most likely turn positive after you begin treatment.
you should retest again in 6 wks, and also test for co-infections.
get a Brain SPECT if you have any Neuro symptoms. skepticism could lead to long term symptoms and treatment.
don't let Lyme get the best of you as it did many who are here thanks to poor judgment by GP's and Lyme Ill-literate Drs. -- sonicbmx
ps - most insurance will deny Tx first time. their goal is to discourage you. you're gonna have to appeal and know what you're talking about.
blow up their fax machines with current news articles ILADS Guidelines (every page), Burrascano Guidelines, video links, etc.
demand the treatment you need/want and don't stop until you get it. TBI's are serious issues.
if treatment falls under "out of network" you will be reimbursed something. spending $1000 is nothing.. i'm somewhere between 15-20K while insurance claims are at 85K.
if you are sick with Lyme your income will continue to drop and eventually cease. this illness gets the best of you.. and you have
a chance to prevent that. do yourself a favor and do the right thing.. your future and quality of life depends on it.
i'm not trying to scare you.. this is just the REALITY of this illness. best of luck.. someone will be here for you.
----------------------------
Posted by Keebler (Member # 12673) on :
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Due to space limitations, the Savely article below does not discuss co-infections. It is essential to assess all TBD (tick-borne disease) as one tick can carry many infections.
This explains the political climate in regards to the medical profession:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases - by Garth Nicolson, Ph.D.
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Posted by Alv (Member # 15192) on :
my son had a weaker Lyme IGENEX test( his immune system was shut DOWN) and positive for coinfections
He has positive MRI -white matters and full blown LYME enchephalitis
So see if you have symtoms ( 39 and 41 are definitly showing something about lyme)...but your body will tell you if you are sick -do not rely on just test...
Posted by Peedie (Member # 15355) on :
I am so depressed. No insurance to cover - how can anyone aford to get treatment?
I got bitten many times 12 years ago. Developed Neurologic symptoms last summer. I have almost all symptoms on the list.
My daughter too. My doctor says desperate people cling to Lyme when all other diagnosis fail.
I'm on a waiting list for two LLMDs. No appointment yet.
But how can I justify the financial burden of treatment with neg. results on the Wb test to my family?
Peedie
Posted by sonicbmx (Member # 12949) on :
my WB's were negative on first go.. you'll get treated by an LLMD if you have signs and symptoms (play it up if need be).
good LLMD's will consider your results clinically positive.
hold your head up and go get what you deserve!
check your PM's.. just sent you some info. -- sonicbmx
Posted by Vermont_Lymie (Member # 9780) on :
You should know that the WB blood test is completely unreliable - there are too many false negatives.
Having a CDC negative test does not, in any way, mean a person does not have lyme disease.
The test was designed to be specific -- so positive results are true -- but not sensitive -- so it misses many true cases of lyme.
Hope you get to see an llmd as soon as you can.
Posted by bettyg (Member # 6147) on :
PRINT THIS OFF; TAKE WITH YOU TO DR.,,,Betty ***********************************
DR. C, MISSOURI'S LLMD, EXPLANATION OF WESTERN BLOT IGM AND IGG !!
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.
Please note that "equivocal" is the same thing as "IND" or "indeterminate." -------------------------------------------------
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.
QB] 58: Heat shock protein. [/qb]
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. ***************************************
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. *************************
Posted by timaca (Member # 6911) on :
I would get tested for other pathogens that have symptoms similar to lyme. HHV-6, EBV and CPn. See www.hhv-6foundation.org and www.cpnhelp.org for more info.
Also make sure you've been thoroughly worked up for non infectious medical issues.
Best, Timaca
Posted by Peedie (Member # 15355) on :
Thanks everyone.
Sonicbmx - I called the doctor this morning. They said they don't take any HMO insurance. They do take PPOs.
I may need to change to a PPO. But this will be expensive and I would be dragging my husband into the PPO as well. (He is on my policy)
One other doctor said even if I changed to PPO, that my insurance company was "outside of the network" or something to that effect. So I would need to pay out of pocket.
I will ask my health insurance agent to call the insurance company and inquire about their policy regarding PPO and long-term LD treatment.
If they do not support long term treatment, I think I should stay with my HMO in the event of something catistrophic or requiring hospitalization.
These things would wipe us out.
I am neurological. I suspect in early stages? Mostly in legs (both) but recently have experienced it in my head and neck.
Some twitching, but not jerking. Also what I call buzzing - something electrical - like in my legs.
I also have the heart issues.
A Brain Spect sounds expensive. I probably could not afford that.
Could I go back to my Neuro Doctor and ask for one through my insurance in view of the additional neurological I have since I saw her last?
She may say no. Is the neurological even serious enough to show?
I need also to consider my daughter's needs first. We were unable to get her blood drawn for Igenex test this week.
We will have it done next Mon. or Tues. and wait for the results.
It sounds like 400mg. of Droxy will not be enough to treat me?
My PCP rx'd me yesterday. I took my first 200mg. last night and another 200mg this morning. I have enough for 30 days.
I suspect I have Bart and Babes also, based on symptoms.
Peedie
Posted by adamm (Member # 11910) on :
You have it, I'm terribly sorry to say.
Posted by daise (Member # 13622) on :
Hi Peedie,
I had a huge bulls-eye, no symptoms, and knew nothing about Lyme. Nine years later I had terrible Lyme symptoms (and TBI's.)
I tested negative by western blot 4 times! I tested positive by CD57 test for chronic Lyme.
Lyme disease is a clinical diagnosis!
High dose, prolonged, multiple antibiotics have made me remarkably better and I'm still in the midst of treatment.
I say, get the PPO! But that's no guarantee they'll pay for Lyme meds.
To convince your parents (or was it his parents?) you might go to www.ilads.org and on the left menu click "Treatment Guidelines" which takes you to the ILADS Guidelines, above and Dr. B's 33 pages of tips for 2005, below. Print both!
Also, if need be, you might also show them Connecticut Attorney General Blumenthal's press release. This shows his investigation of IDSA members who devised the harmful IDSA Guidelines have conflicts of interest:
You can always do a search (near the top of any page) for your concerns or post more questions for what you need.
Stay with us! We're here to help.
daise Posted by WildCondor (Member # 434) on :
Looks positive to me!
Here's a good article explaining this Western Blots Made Easy by Dr. James Schaller, M.D.
In my recent past articles I discussed the 11 new human Babesia species, the problem some have removing Lyme's surface biotoxins, the trouble with having indoor mold while treating tick infections, and I mentioned that Bartonella has 30 ways of damaging the body dangerously and it has 200 symptoms. These were sample reasons for treatment failure.
But I am increasingly meeting smart doctor's and patients who do not know how to read a Western Blot. This is the test which usually gets you a basic Lyme diagnosis. So let us go over this so you understand why some labs are better than others. And help you make sense of this medical test which is so very confusing.
Strains--Lyme has many varieties and it is amazing that some companies soberly use Lyme strains in their test which are not representative of more than a small region. So this obviously makes the chances of a positive virtually zero. If you are looking for Asian people in Alaska, can we agree you will find few compared to Japan?
Proteins Tested--the numbers on a Western blot such as 18kD merely mean they have identified a piece of the Lyme bug that weighs 18 kilo Daltons. Over the years, labs have become very good at separating out these parts of Lyme. In a quality lab, the Western Blot tests for many proteins and not just a few.
But I would imagine many still feel the source of the eccentric numbers on the Western Blot do not make any sense. The numbers are simply parts of Lyme in the same way you have a nose, mouth, arm, and liver. Some labs only check for the ``nose'' and others check for up to 13 Lyme parts.
One important feature of a top Lyme lab is the way they get these proteins. One lab grows Lyme for a long period and harvests key proteins as the Lyme modifies itself--just like when you change your outer clothing each day. Other labs do not harvest all these changing outer proteins. And if they have some they are not in equal amounts. Irene (www.igenex.com) is the only lab I know which has 13 proteins tested from 2 important strains representative of international Lyme. And amazingly, they have equal amounts of the search proteins.
Valid Results or Nonsense--In order to be licensed in New York State you are sent clear negative samples and clear positive samples of Lyme proteins in blind tubes. IGeneX results have been exceptional and approximately 100% year after year. I have this posted on my site along with the exact results and all of their licenses at www.HopeAcademic.com. In contrast, I have had patients covered in deer ticks or with a classic, grossly obvious, bull's eye rash, who months after the rash, when seeking treatment, were negative at many labs. Some of these well known labs have dummied down their results and testing because ``they were getting to many positives.'' The Dr. Jones' Approach to Reading Western Blots:
A Common Sense Position
One of the happiest days of my recent career was when this 78-year-old veteran doctor, beloved all around the USA for his treatment of over 10,000 Lyme-infected children, agreed to treat my children. His reading of Western Blots is not affected by any Big Government agencies. He is not accountable to any lab oversight government entity. And no one at the CDC, FDA or any medical board in the USA has his massive experience in treating Lyme in youth and reading Western Blots. So read below his clear and convincing reasoning on the interpretation of the Western Blot.
Before I offer Dr. Jones's material, let me put in them in context, and share a few basics. First, the Western Blot measures the antibodies your body makes to attack the Lyme infection.
One problem I have found with this is that if a child has the infection at a very young age the Lyme can hide and be missed on rare occasions even with a top lab. In my Babesia textbook, I quote the brilliant Dr. Robert Bransford (page 312--314), who lists 28 ways Lyme hides from the immune system. How do I know these ``negative'' Western Blot little children had Lyme? I found all the other co-infections. And after treatment, they began to make Lyme antibodies and became positive over time.
Also, it is important to note that like most progressive Lyme experts, Dr. Jones assumes you have a Western Blot from IGeneX, which is an internationally famous, tick-only lab, with full lab certification in every possible state offering a license and also is CLIA and Medicare approved. Other massive cheap national labs process hundreds of types of tests, and millions of patients. They rarely find a positive result even in epidemic counties, in people who have profound and advanced Lyme clinical symptoms.
However, if you have had a Western Blot done at a junk lab, please still glance at the result. Why? Because you may find, as I did with one relative, that one of the antibodies or "bands" was positive. In this relative, the band was a "fingerprint" band. Meaning, Lyme is the only organism that makes the human body make this antibody. The child was positive.
But what is a ``fingerprint'' band or the important numbers on a Western Blot?
Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant-perhaps this is a rhino? This is the 41 band. It is from the flagella's, the parts inside Lyme that help it move--they get a lot of attention in the body, in the same way a whip snaps and gets attention in the hands of an expert user. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.
Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones' point. It you see a Western Blot 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme--just like double tusks on an elephant.
What Do the Number of Pluses Mean?
IGeneX gives levels of antibodies. One + means you have some antibody of that type. A single positive is plenty strong, because that is the same level of brightness seen in the positive control run next to your blood test. This means they run a fake sample with all 13 proteins which should show always show up as 13 positives. It helps confirm no error in the testing.
If you have a ++ or a rare +++, this means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives sometimes goes up with treatment and healing of the immune system. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.
Also, many people have ``IND'' or indeterminate findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. Consider a positive in the level of a single + to be a sharpie flair black line. I consider the IND to be a black pen line.
In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the IND sometimes becomes a clear + which means you now have new and clear antibodies against this part of the Lyme bug. I consider all IND's as weak positives. This is my opinion.
Currently, IGeneX does not use Dr. Jones' criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies and in general the government is perhaps decades behind real-world clinical medicine. Apparently, the government and many insurance companies blindly follow 14 individuals who actually think they can control 800,000 physicians and 300 million Americans.
Charles Ray Jones, M.D.
Quotes Regarding Western Blots
There are nine known [Lyme] Borrelia burgdorferi species specific Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is lab evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
CDC Criteria are Confusing in Real Clinical Settings
CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.
CDC Western Blot IgG surveillance criteria include 18, 23, 30, 37, 39 and 93 and exclude bands 31, 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.
This does not make sense.
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 10, 000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.
[Dr. Schaller inserted all bolding in Dr Jones' article above, inserted some spacing and simplified a number of medical terms.]
Dr. Schaller is working with Dr. Jones on a Pediatric Lyme book which is 50% completed. Dr. Schaller is the author of 19 books including: The Diagnosis and Treatment of Babesia, Mold Illness and Mold Remediation Made Simple, The Complete Guide to Artemisinin, When Traditional Medicine Fails, 100 Solutions to Out of Control Youth, Suboxone--Pain Treatment with Addiction Relief. He is currently preparing the most up to date textbook on Bartonella, which he feels is the top vector infection in the world--possibly more common than Lyme. Dr. Schaller has 25 National and
International Medical Publications in such journals as JAMA, Medscape, and some of the largest pediatric journals in the world. He was the first to publish a practical cancer cure which blocks a single enzyme for a deadly blood cancer, which has become the standard treatment internationally. He has also designed wholesale nutritional products and published nutrition and herbal purity and potency research.
Dr. Schaller is a strong advocate for looking at many treatments and illness causes as can be seen from his main web site, www.PersonalConsult.com. Posted by Peedie (Member # 15355) on :
Thanks to everyone for the reply. I am commited to see a LLMD. I'm on the waiting list for 2. I'll take my husband with me and get an expert to look at the results and advise further testing.
Best of health to all -Peedie
Posted by jamescase20 (Member # 14124) on :
No, you have lyme, there are 1800 protein coats it uses to hide, and if your chonic, you will be in bands that they are not in early phase.
I strongly think smartest thing would either a trail course, of something like minocin, (to bring on pain) meaning, infected,
or retesting, or the one week of minocin and wait another week and retest then.
Posted by celtic (Member # 15850) on :
quote:Originally posted by adamm: You have it, I'm terribly sorry to say.
Posted by seekhelp (Member # 15067) on :
These IGenix test results confuse me so much. it almost (well does) put me in a panic because I have had many symptoms too and a negative IGenix WB (according to their and CDC standards).
I just get overwhelmed because I've been a member here for over a month now and every posting like this (there are many) gets 95%+ of responders saying "yes, it's definitely lyme."
I start to wonder just how big this lyme issue is!
Posted by daise (Member # 13622) on :
Hi Seekhelp,
I tested negative for Lyme by western blot from IgeneX 4 times.
I tested very positive for chronic Lyme by CD 57 count test. A blood sample is drawn by your doctor or your doctor sends you to a local blood lab and it's shipped ONLY to LabCorp Lab in Dallas, TX.
However, you must have had chronic Lyme signs and symptoms for over a year (or well over a year?) in order for it to have worn down your immune system enough to show up on a CD 57 count.
Some people like Fry Laboratory in Scottsdale AZ. They have yet another technique.
Yet, STILL, STILL, STILL, Lyme remains a clinical diagnosis.
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