I needed to do this again, so please bare with me, ok.
What do you think on these results? I have read some articles and know what others think, but always love to hear your voices.
If I was suffering from CFS/Fibro, would I have results like these from the WB testing?
Please remember I worked in a Humane Society wher we were informed about the presence of ticks. Some dogs had Lyme Disease, they were in seperate rooms.
I went there for 6-7 weeks in a row, always brushing off insects of all kinds, all over me, my clothes, in my car, hair, ears, etc.
I would on a daily basis brush them off me and the dogs..We would walk through the woods, Deers in the area as well.
Placing all this info together, I feel it is Lyme Disease!
Igenex IGM Result IND CDC/NYS Result NEG
18 KDa + 41 KDa + 58 KDa + 66 KDa + 30 KDa IND
All other bands are -
Igenex IGG Result Neg CDC/NYS Result NEG
41 KDa ++ 58 KDa + 39 KDa IND 23-25 KDa IND
All other bands are -
PCR's are - Serum - Whole Blood - Both Plasmid & Genomic
just my personal opinion. Looks positive. Of course you know by now, the CDC standareds are a waste of good ink.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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BostonLyme2005
Unregistered
posted
Yes, learning that CDC has much more to learn about Lyme, and they should, and fast, and make the world know it it!
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
dana
Thanks for the Gretchen analysis of the bands. Hurried to copy it since I did not when I first read that thread.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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BostonLyme2005
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posted
I feel great having access to this website and the many people here who all want to achieve the same goal in life......Being Healthy!
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bettyg
Unregistered
posted
Yes, results would be the same; you HAVE LYME based upon the positives you showed.
posted
I don't want to be part of the poo poo party but I think we have to be careful when we tell someone whether they have Lyme or not. As most of us know lab testing for Lyme disease is not where it should be. Having said that, no one should consider a person positive just because a lab test for Lyme indicates such. Just like a CDC negative doesn't necessarily mean a negative. I know you guys are aware that Lyme is a clinical diagnosis. I guess I'm really more concerned about new members who may run with the information that the more experienced members share. If I'm way off base here, I truly apologize and I'll put a sock in it. I'm really not trying to be negative here. I think you guys are wonderful and I've learned so much by coming here and reading. Thanks guys! Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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BostonLyme2005
Unregistered
posted
Thanks for all the input....Always learning new things here..
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posted
Christina - I'm new here, but I thought false positives were almost non existent? Are you saying that we can't trust our western blot results at all?
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
False positives are almost entirely non-existent (maybe entirely) in the antigen-related tests like PCR. They are in my opinion still almost non-existent in Western Blot, etc. If you have a "Positive", it is "Positive" in almost all cases. Where you could debate is when it is "Negative" but you have Bb-specific bands. There is some cross-reactivity with some of the bands, but for many, they are very specific. As I understand, the presence of some bands is a very strong indicator or serological evidence of Bb.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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I don't want to imply that you can't ever trust any of the results, but they have to be taken in conjunction with your clinical history.
Even if false positives are considered rare, it is possible. I guess what I'm trying to say is we should be careful in saying someone is positive for Lyme disease based on lab results alone.
I don't want trolls in here thinking we're all quick to diagnose everyone with Lyme disease. We'll be faulted for causing some kind of Lyme frenzy. I just want us all to be responsible posters.
I'm desperate like the rest of you, but I'm not the one with Lyme disease (or at least I hope not).
My mother was just recently diagnosed with Lyme disease after 13 years with an MS diagnosis. She's basically an invalid now. She is bed bound and unable to care for herself any longer. Her legs are so atrophied that I worry about her ever having the ability to walk again. She is fortunate in that she has not lost her mind and is very cognitively aware.
She has a trache in for lung suctioning as her diaphragm muscle is very weak. In fact, she just went into the ICU yesterday because she once again has pneumonia.
I spent several years researching Lyme disease for my mother. She always came up CDC negative on her WB but positive on the ELISA. On one of her tests though, band 39 and 41 showed up and that rang a bell for me.
Of course none of the doctors would treat her for Lyme based on those two bands alone because it wasn't CDC positive. I was 99.9% sure she had Lyme disease based on her entire history and those two bands only confirmed it for me.
I ended up writing her neurologist a letter/report telling him about her clinical history and all of my research. I gave him nothing but peer reviewed info, my mother's medical history, and stuff documented about the Air Force base we lived at when this all began.
This doctor was like her 5th neurologist, so he was just assuming she had MS because everyone else said so. Anyway, he was kind enough to refer my mother to the LLMD I was referred to by the Lyme Disease Network of South Carolina.
Even though I was 99.9% sure, I always told my mother that it's possible that she has MS or maybe even both (if that's possible). I never wanted to lead her astray. I wanted a physician to confirm it for her. I just had to get enough info to convince her and my father to see an LLMD.
Wala, here we are today. The LLMD saw her old western blot with the 39 and 41 and looked at her clinical history and looked at her physically and was absolutely sure she had Lyme.
He was careful in saying that though. He does not believe that Lyme causes MS and thus said he would treat her Lyme infection but if she has MS, she would have to continue seeing her neurologist.
A few days ago we learned that she also has Bartonella, so I'm not sure how that's going to play into things.
Ok, I can't believe I rambled on as I have. I really just want us to all be careful in ``diagnosing'' our friends here.
Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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first of all, an IgG blot with ONLY 41 and 39 kdA, ignoring the other bands for a moment, is practically diagnostic for Bb exposure and latent infection in the absence of syphilis.
really this is also true for 41 kDa alone.
there is no meaningful substance to the claim that 41 kDa is a cross reactive band. in actuality, it's no more cross-reactive than any other band.
if you go back and examine the scientific studies steere etc. reference when disparaging 41 kDa, you will discover that the problem is the exact opposite of what they claim. the serum of individuals with gingivitis in most cases DOES NOT cross react with Bb. However, the serum of lyme patients DOES cross react with tests for gingivitis-causing spirochetes and other bacteria.
in other words, gingivitis and periodontitis cannot be mistaken for LB based on serology; however, LB CAN be mistaken for gingivitis based on serology; this is not a problem in the real world because dentists do not use serologic tests for oral infections.
now, does this mean you are experiencing active infection?
not necessarily. however, a subpopulation of individuals with 41kDa alone likely ARE experiencing active disease. it has recently been demonstrated that Bb flagellin is capable of initiating inlfammatory response through toll-like receptor 5.
also, keep in mind that some people who ARE CDC positive do not experience active disease. it's all related to the genotype of the patient and how their immune system responds to the infection.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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valymemom
Frequent Contributor (1K+ posts)
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posted
Allgonda
Thanks for all that information.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Aligondo Bruce I'm totally with you on the CDC definition. It's just hard when you have doctors who know so little and follow it. I mean that IS the problem right now for Lyme patients and LLMDs.
You are so full of information. Are you a microbiologist by any chance?
Thanks for the info! Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Christina - I hope your mother gets better. Is she being treated now? Please keep us posted, this is very interesting. She's very lucky to have a daughter such as yourself.
Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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I agree. I went undiagnosed for 19 years with lyme because the ELISA test kept coming back negative.
I had a Western blot IgG and IgM done at IGeneX last spring and both came back positive. I was the most positive on the bands the CDC doesn't even check for. My band 31 on my IgM was 31++++. I never had a lyme vaccine!!
On my IgM western blot I had 5 positive bands and 5 IND. My LLMD says I am very clearly positive, but according to CDC tests I'm still not CDC positive.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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My mother started treatment with an LLMD in January! I flew in so I could go with her to her 1st appointment.
She's on Biaxin 1000 mg/day and Minocin 200mg/day for a week and then she has a one week break and then on the 3rd week she's on the same thing as above but Flagyl 1000mg/day is added, then a break on the 4th week.
The whole cycle starts over again and on the 9th week, she sees her LLMD again.
Because of the pneumonia her abx sequence will be disrupted, so hopefully it won't cause any problems in her Lyme treatment.
She's on Moxifloxacin & Vancomyacin for the pneumonia, so that may help the Lyme side of things.
She's in a lot of pain anyway, but the antibiotics causes twice the pain.
At the same time she's also cutting back on her pain meds and the Baclofen, so it's hard to tell if the pain is from the herxing, cutting back on her meds or both.
I think she's herxing though.
I'll definitely post about her progress so others may be able to learn something from it. Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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BostonLyme2005
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posted
I will be speaking to my LLMD about these results tomorrow. There so much to learn here.
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quote:Originally posted by aiden424: [QB] forget what the CDC says.
their standard is a fraud.
I agree. I went undiagnosed for 19 years with lyme because the ELISA test kept coming back negative.
I had a Western blot IgG and IgM done at IGeneX last spring and both came back positive. I was the most positive on the bands the CDC doesn't even check for. My band 31 on my IgM was 31++++. I never had a lyme vaccine!!
On my IgM western blot I had 5 positive bands and 5 IND. My LLMD says I am very clearly positive, but according to CDC tests I'm still not CDC positive.
Kathy
again, although steere et al will not admit this publicly, the real problem is in differentiating active disease from inactive, latent infection. the current CDC standard for blotting actually isn't very good at this either, as a subgroup of individuals will test positive on western blot {by CDC standards} and still not be symptomatic.
On the other hand, large numbers who are not positive by the artificial and fraudulently based steere/dressler standard WILL be experiencing active infectious processes of various sorts.
A flagellin-enriched elisa is close to 100% sensitive in detecting Bb exposure and infectious process, but it doesn't differentiate between active and asymptomatic disease.
a few years ago the US armed forces tested almost 10,000 serum samples from its serum bank by elisa for Lyme borreliosis.
more than 1,000 of the samples were positive. However, when those 1,000 samples were then subjected to western blotting, only 12 tested positive on WB by the CDC standard.
This is an example of the moral bankruptcy of the steere standard, because many people who ARE NOT positive by the CDC standard will still be symptomatic. They are intentionally cut out of the process. A good percentage of these healthy young soldiers are carrying latent infections which will someday become active, if they are not already causing subtle neuropsychiatric disease.
I want to give you guys an idea of why this was done. First of all, lyme is expensive to treat, so a standard which artificially reduces the number of cases can be used to save insurance companies money. Second of all, look at this graphic, the C's are CDC positive cases, and the A's are not positive by CDC standards, yet have indisputable evidence of exposure and latent/asymptomatic/ smoldering/chronic infection:
Now, let's restrict ourselves to thinking about lyme hyper-endemic areas, such as Connecticut. If you were to go out and test the general population in coastal connecticut for lyme borreliosis using ELISA and blotting, you would find that a very large percentage - probably in excess of 25% - tested positive on elisa. Some have symptoms, but some do not. This definition encompasses the entire pyramid, C's AND A's.
On western blotting, you would also find a similar percentage recording bands at 41 kDa, 39 kDa, and a random assortment of others. Many of these people would be considered to have positive serology reflective of active infection if they lived in europe - or if they were DOGS or CATS in the united states.
However, you have decided that you want to have a vaccine. The vaccine will be used on the inhabitants of a endemic areas to help prevent disease. Now, you've discovered that if you use 41kDa on WB as the foundation stone of positive serology {which means C's AND A's}- you've suddenly made it IMPOSSIBLE for you to evaluate your vaccine through clinical trials, since a huge chunk of your market share is ALREADY INFECTED. In other words, you will not be able to prove that disease is being prevented by the vaccine, since these individuals already have the disease. Moreover, who would want the vaccine if they already knew they were carrying a latent infection? So they say, the C's have disease, and the A's do not have disease. Suddenly, magically, the A's are normal and everything is fine.{although not really}. They brainwash the medical community into believing this crap, and who really cares about the suffering of TENS OF THOUSANDS who are labeled as munchausers or hystericals. Who cares if their lives are destroyed or if their families are financially ruined?
Another reason the fake standard is used, they don't want MILLIONS of americans to know that they are carrying latent spirochetal infections which someday may explode {if it's not already happening} into permanently disabling disease.
I estimate that between 8 and 15 million americans are carrying this infection. In europe, where more honest science is practiced, the ratio of symptomatic:asymptomatic is around 1:8.
American strains are more dangerous, for a variety of reasons, and the actual ratio in my estimation {although nobody has studied this for a while because it's a taboo subject} is closer to 1:2 or 1:3.
Deer eradication should have been implemented by the early 90's, but they did not do this because they wanted to preserve US credibility abroad and cannot afford to admit the obvious, which is that US strains are more dangerous than european strains, and are likely derived from a bioweapons accident.
They can't cull the deer without having to admit this. Moreover, s.s. strains have spread to europe. We can't blow up muslim wedding parties 10,000 miles away on the basis of pretended WMD claims if we have no credibility on the subject, which would be the case if a bioweapons accident were acknowledged.
Lyme disease is a MAJOR FOREIGN POLICY ISSUE.
That's a big reason why we had the fake CDC/steere standard, which by the way are based on the fraudulent steere/dressler study in which statistical and scientific fraud was implemented in order to distort the importance of certain bands.
Remember, these people don't care about the TRUTH. What they care about is that everyone believe the ILLUSION. Allen Steere's entire career is an exercise in scientific fraud, and he's not the only one.
Private message me for more information.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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quote:Originally posted by BostonLyme2005: Yes, learning that CDC has much more to learn about Lyme, and they should, and fast, and make the world know it it!
LMAO. They know all about it. They know what they are doing, it's very evil, but these CDC/IDSA guys know what they've been up to.
They don't so much need to learn about Lyme borreliosis as they need to learn about MORALS and INTEGRITY and what it means to be a PATRIOTIC american as opposed to being a flunky for the bushleague neocon zionist imperialist oil pigs.
they sold out american citizens by the bucketload for special interests in israel and in the oil industry that really don't matter to the average middle class american citizen.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WESTERN BLOT IN LYME * Positive blot contains bands specific for Lyme * Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93 * Spirochetes in general: 41 * Nonspecific: All others! * The more specific bands that are present, the more sure the diagnosis
PITFALLS OF THE WESTERN BLOT * Very difficult to produce and interpret a western blot * Bands do not easily line up * Appearance affected by subtle changes in temperature and chemistry of the test system * The specific strain of Bb used to produce the antigens may not match the strain the patient has!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by treepatrol: WESTERN BLOT IN LYME * Positive blot contains bands specific for Lyme * Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93 * Spirochetes in general: 41 * Nonspecific: All others! * The more specific bands that are present, the more sure the diagnosis
PITFALLS OF THE WESTERN BLOT * Very difficult to produce and interpret a western blot * Bands do not easily line up * Appearance affected by subtle changes in temperature and chemistry of the test system * The specific strain of Bb used to produce the antigens may not match the strain the patient has!
Some of the problems with the western blot, especially with the bands not lining up, can be completely avoided by using recombinant antigens as opposed to whole cell lysate.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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BostonLyme2005
Unregistered
posted
Thanks...My PCP still thinks it is not Lyme!
He says: "There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA 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 serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease."
He explains test results and what they mean too.
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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He says: "There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA 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 serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease."
He explains test results and what they mean too.
again, a strong band at 41 kDa is virtually diagnostic for Bb exposure and possible active infection unless you've had relapsing fever.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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