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Lyme Band "cut off" percentage question
Hello! I am new here. Long story short, I've been suffering from a host of symptoms, mostly neurological & autoimmune for a few years. I've had many "negative" lymes tests but my last test done by a functional medicine doctor showed clear bands from 41, 39 and 23 for IGM. However, these bands were not "dark enough" according to the lab and did not meet the 60% or greater than the control band requirement. (I've consistently had CDC positive band 41 IGG & IGM but I know that band is not lyme specific)
My question is this: Why else would these bands show up if not for lyme? Is there a reason the CDC uses a percentage cut off because maybe they know there can be false positives if the bands do not show up "dark enough"?
Thank you for any input!
My question is this: Why else would these bands show up if not for lyme? Is there a reason the CDC uses a percentage cut off because maybe they know there can be false positives if the bands do not show up "dark enough"?
Thank you for any input!
This is excellent news -- not that you have Lyme for certain, but that you have a doc who *understands* it all -- !!! Hurrah!
I remember how I felt when I finally found a Lyme doc who understood me and my history -- it had been a long, long journey, and to finally have a wise doc acknowledge and explain what was going on in my body was relief and happiness all in one. I was not happy that I had Lyme and babesia, but I was relieved and heartened that I at last knew the name of my afflictions **and what to do about getting rid of them**!
Keep us posted! We look forward to hearing from you on your progress. You made my day!! :)
I remember how I felt when I finally found a Lyme doc who understood me and my history -- it had been a long, long journey, and to finally have a wise doc acknowledge and explain what was going on in my body was relief and happiness all in one. I was not happy that I had Lyme and babesia, but I was relieved and heartened that I at last knew the name of my afflictions **and what to do about getting rid of them**!
Keep us posted! We look forward to hearing from you on your progress. You made my day!! :)
Thank you Jackie for always being so encouraging! I got my Igenex test results yesterday and I am officially a CDC positive!! After 2 years of being misdiagnosed and brushed off, I can't even describe the feeling. I told my husband I want to frame the results!! Not that I want Lyme, but to have proof...
I start my treatment today.
I start my treatment today.
Good for you for plowing ahead! Keep us posted on what the test results are, okay?
I wanted to share my update. Since I last posted, I saw an LLMD (twice now) and he clinically diagnosed me with Lyme. I had extensive blood work done which showed extremely high levels of inflammation (my Comp protein C4a was 19,000, anything over 2,000 is considered inflammation), a suppressed immune system, and the following viruses are now currently active in my body: mono, chronic fatigue (I forget how he explained knowing this), roseola (I think this is herpes virus 6 - not the sexual kind), and I also tested positive for brucella, which I think is a lyme co-infection? My thyroid levels are off now and lots of vitamins/minerals are low. We sent more blood to Igenex but I don't have those results yet. I had a stool analysis done and have a parasitic infection. I was on 3 days of Albendazole for that and am now doing a detox my doctor prescribed until I see him again. I'm taking NAC, S-acetyl glutathione and alpha lipoic acid, along with Pinella brain/nerve cleanse and Burbur detox by Metagenix.
Has anyone else done this sort of detox or have parasites from Lyme?? My doctor said he will start me on antibiotics at the next visit. In the meantime, I feel as though I'm going downhill. I know this sounds dramatic but I feel like I'm dying. The fatigue is unreal!!!
Has anyone else done this sort of detox or have parasites from Lyme?? My doctor said he will start me on antibiotics at the next visit. In the meantime, I feel as though I'm going downhill. I know this sounds dramatic but I feel like I'm dying. The fatigue is unreal!!!
1 Comments
Oops, I meant NutraMedix, not Metametrix (regarding the two detox supplements)
Glad you have located a doc, esp. one who comes recommended by someone 'in the know'!
Some docs keep a cancellation list of people who are eager to get an appointment and live reasonably near the doc's office so they could get to the office on short notice of a cancellation. If you are fairly close by the office, you could call the doc's office soon and ask if you could be put on the cancellation list and tell them about how long it would take for you to get there. What's the saying ... 'you don't ask, you don't get.' But not to worry, the time will go faster than it seems right now. Just knowing that the cavalry is coming can be quite comforting.
I just (again) read my correction to myself above, and it still sounds squirrely, but I think you got the drift. :)
Take care, and keep us posted!
Some docs keep a cancellation list of people who are eager to get an appointment and live reasonably near the doc's office so they could get to the office on short notice of a cancellation. If you are fairly close by the office, you could call the doc's office soon and ask if you could be put on the cancellation list and tell them about how long it would take for you to get there. What's the saying ... 'you don't ask, you don't get.' But not to worry, the time will go faster than it seems right now. Just knowing that the cavalry is coming can be quite comforting.
I just (again) read my correction to myself above, and it still sounds squirrely, but I think you got the drift. :)
Take care, and keep us posted!
No worries Jackie, everything you said made sense! :) Thanks for letting me know about that PCR test. I did find a doctor through ILAD who was also highly recommended by another person who saw him so I'm looking forward to the visit and hopefully some definite answers. I wish I didn't have to wait a month but I'm thankful to be able to see him at all.
Okay, it really was the middle of the night when I wrote that above, and at least this sentence (there could be more!) makes not much sense:
As I wrote it above: "There is a newer and more straightforward test called PCR, short for polymerase chain reaction, which test is not negatively affected by the presence of Lyme bacteria. Instead, PCR helps fight the Lyme bacteria, which is exactly what is needed to get rid of the Lyme infection."
The last sentence, "Instead, PCR helps fight the Lyme bacteria ..." should have said something like: "Instead, PCR helps **find** the Lyme bacteria ..." -- that is, confirming the presence of the Lyme bacteria and thus the Lyme infection.
Hope that makes better sense ... sometimes the fingers do their own cha-cha on the keys, esp. late at night. :)
As I wrote it above: "There is a newer and more straightforward test called PCR, short for polymerase chain reaction, which test is not negatively affected by the presence of Lyme bacteria. Instead, PCR helps fight the Lyme bacteria, which is exactly what is needed to get rid of the Lyme infection."
The last sentence, "Instead, PCR helps fight the Lyme bacteria ..." should have said something like: "Instead, PCR helps **find** the Lyme bacteria ..." -- that is, confirming the presence of the Lyme bacteria and thus the Lyme infection.
Hope that makes better sense ... sometimes the fingers do their own cha-cha on the keys, esp. late at night. :)
One more thought: not mentioned in this thread so far is the use of a different kind of test: PCR, short for polymerase chain reaction.
Wikipedia defines it as follows: "The polymerase chain reaction (PCR) is a technology in molecular biology used to amplify a single copy or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence."
This PCR test is structured entirely differently from the old standard tests you have already have had done (ELISA and Western blot). Those two older tests look in your blood for your immune system's reaction to the presence of Lyme, as already stated above.
Unfortunately, Lyme bacteria have the ability to *suppress* your immune system activity, which allows the Lyme bacteria to take over your body to some degree, like a bunch of teenagers throwing a house party when mom and dad are out of town. If the immune system is suppressed by Lyme, then the immune system isn't up and fighting, so Lyme is calling the shots.
There is a newer and more straightforward test called PCR, short for polymerase chain reaction, which test is not negatively affected by the presence of Lyme bacteria. Instead, PCR helps fight the Lyme bacteria, which is exactly what is needed to get rid of the Lyme infection.
Your organizational skill with the tests etc. would definitely interest a Lyme specialist, because s/he would understand the importance of the data you bring along with your symptoms and history. MDs like these are often members of a voluntary group of docs with an interest in Lyme, that group being ILADS, short for International Lyme and Associated Diseases Society.
I am told that not all ILADS member docs are rocket scientists, but some of them are, and definitely worth seeing one in my experience. My Lyme doc was (still is) a member of ILADS, and he got me and a family member properly diagnosed and treated over the course of a few months, using certain specific antibiotics once the doc tested us for what infections the doc suspected based on our symptoms. We both had Lyme disease and babesiosis, a separate infection that often shows up when Lyme starts a new party in some poor soul's body as it did for us.
The testing and treatment for these various infections is a critical step in the ability to become truly well again, and if I ever again suspect having Lyme, I will go straight to a good Lyme doc. We are in California, and I don't know the Lyme docs in NY, but many people here may have some suggestions. Also, the strains of Lyme in various places may need different testing than in other parts of the country.
We try very hard NOT to state our Lyme docs' names in public here, because there are many fusty docs who don't think Lyme is anything to worry about, and those docs often try to make trouble for the LLMDs with the state and local medical boards. Result: we try to protect our blessed LLMDs and their identities in public arenas such as this site.
It's 230 am (yawn!) and a big day ahead, so I'm signing off, but let us know if you have any questions etc. now or later. I've been entirely well for several years now, and I keep showing up here just to get my own back against the miserable Lyme bugs, so I'm often lurking, as are others who can answer your questions and swap ideas.
Keep us posted on what and how you do, okay? Best wishes! J
Wikipedia defines it as follows: "The polymerase chain reaction (PCR) is a technology in molecular biology used to amplify a single copy or a few copies of a piece of DNA across several orders of magnitude, generating thousands to millions of copies of a particular DNA sequence."
This PCR test is structured entirely differently from the old standard tests you have already have had done (ELISA and Western blot). Those two older tests look in your blood for your immune system's reaction to the presence of Lyme, as already stated above.
Unfortunately, Lyme bacteria have the ability to *suppress* your immune system activity, which allows the Lyme bacteria to take over your body to some degree, like a bunch of teenagers throwing a house party when mom and dad are out of town. If the immune system is suppressed by Lyme, then the immune system isn't up and fighting, so Lyme is calling the shots.
There is a newer and more straightforward test called PCR, short for polymerase chain reaction, which test is not negatively affected by the presence of Lyme bacteria. Instead, PCR helps fight the Lyme bacteria, which is exactly what is needed to get rid of the Lyme infection.
Your organizational skill with the tests etc. would definitely interest a Lyme specialist, because s/he would understand the importance of the data you bring along with your symptoms and history. MDs like these are often members of a voluntary group of docs with an interest in Lyme, that group being ILADS, short for International Lyme and Associated Diseases Society.
I am told that not all ILADS member docs are rocket scientists, but some of them are, and definitely worth seeing one in my experience. My Lyme doc was (still is) a member of ILADS, and he got me and a family member properly diagnosed and treated over the course of a few months, using certain specific antibiotics once the doc tested us for what infections the doc suspected based on our symptoms. We both had Lyme disease and babesiosis, a separate infection that often shows up when Lyme starts a new party in some poor soul's body as it did for us.
The testing and treatment for these various infections is a critical step in the ability to become truly well again, and if I ever again suspect having Lyme, I will go straight to a good Lyme doc. We are in California, and I don't know the Lyme docs in NY, but many people here may have some suggestions. Also, the strains of Lyme in various places may need different testing than in other parts of the country.
We try very hard NOT to state our Lyme docs' names in public here, because there are many fusty docs who don't think Lyme is anything to worry about, and those docs often try to make trouble for the LLMDs with the state and local medical boards. Result: we try to protect our blessed LLMDs and their identities in public arenas such as this site.
It's 230 am (yawn!) and a big day ahead, so I'm signing off, but let us know if you have any questions etc. now or later. I've been entirely well for several years now, and I keep showing up here just to get my own back against the miserable Lyme bugs, so I'm often lurking, as are others who can answer your questions and swap ideas.
Keep us posted on what and how you do, okay? Best wishes! J
Good for you! Some of us with Lyme get 'brain fog' that messes up what used to be a fully functioning mind, but after proper diagnosis and treatment, the brain-world becomes sunny and organized again. :) You go!!
Wow - I am impressed! I have the best intentions but never enough time and "I'll do it next" frequently doesn't make it to "now"... Can I borrow you for a few weeks?
;-)
;-)
Thank you for the advice, Jackie! I'm smiling because if you only knew how organized and on top of those things I am, you would be amazed. :) I have a file with every test ever done, detailed lists of every doctor I've seen with all contact info, a timeline of symptoms, etc. I'm starting to copy everything for the new doctor I'm seeing in January.
I will certainly stay in touch and post how I make out. Thanks again!
I will certainly stay in touch and post how I make out. Thanks again!
If you are not already in the habit of getting full copies of all lab results etc. from whatever medical people (docs and others) you see, I would start *now* being sure to always get a full copy.
My theory: I paid for the tests, and I want a full copy!
Newly recognized illnesses and conditions sometimes require patients to change docs over time, if as things progress the doc isn't interested in pursuing various avenues of whatever is ailing you. This is particularly so in ailments like Lyme, where too many docs just blow it off.
ALWAYS keep a FULL copy of ALL your tests in a folder or binder at home ... if you wait and ask a doc's office later, there is too often a regrettable tendency for the file clerk to copy only summary pages and things that look 'interesting' rather than give you **complete** copies that may be read quite differently compared to docs who really don't understand Lyme, no matter how lofty their credentials and how much grey hair they have.
Stay in touch and let us know how things go, okay? All good wishes!
My theory: I paid for the tests, and I want a full copy!
Newly recognized illnesses and conditions sometimes require patients to change docs over time, if as things progress the doc isn't interested in pursuing various avenues of whatever is ailing you. This is particularly so in ailments like Lyme, where too many docs just blow it off.
ALWAYS keep a FULL copy of ALL your tests in a folder or binder at home ... if you wait and ask a doc's office later, there is too often a regrettable tendency for the file clerk to copy only summary pages and things that look 'interesting' rather than give you **complete** copies that may be read quite differently compared to docs who really don't understand Lyme, no matter how lofty their credentials and how much grey hair they have.
Stay in touch and let us know how things go, okay? All good wishes!
Thank you so much for your detailed response!! It makes perfect sense. I do have an appointment with an LLMD for January. I was seeing a functional medicine doctor who ran the test and she believes that the test, along with my "mysterious" symptoms, point to lymes. She suggested I see an LLMD too.
Most excellently said! I totally agree and I would follow your suggestions as stated above.
Furmomof6, best wishes and let us know how you do and how we can help. We've all been where you are in one way or another.
There is life after Lyme! It just takes a wise doc and determined patient. Keep us posted!
Furmomof6, best wishes and let us know how you do and how we can help. We've all been where you are in one way or another.
There is life after Lyme! It just takes a wise doc and determined patient. Keep us posted!
There are many more false negatives than false positives. The problem is that this bacteria is really hard to find, and therefore identify, once it's established. The CDC is concerned with official counts and making sure that everyone counted absolutely meets their minimum test. They also acknowledge that the test results should not be used alone in diagnosing the disease, but that Lyme needs to be a clinical diagnosis, which is to say that a knowledgeable doctor has observed and interviewed the patient, and maybe run some other tests, to say whether or not that patient most likely has, and would benefit from treatment for, Lyme disease.
My official test results do not pass the CDC requirements either, and I also had Lyme-specific bands that were not "dark" enough. My LLMD (Lyme-literate MD, specialist) looked at the bands, said these bands are proof that I have at some point been exposed to and created the antibodies against Bb (the Lyme bacteria), plus I have had many opportunities to be exposed to ticks and tick bites, and I have lots of symptoms that point to Lyme infection and disease, and I've had them a long time. Therefore, he is treating me. 5 1/2 months in, I say with certainty (despite my test results) that I have Lyme disease. And we are slowly beating it back.
Those bands that are present but "light" indicate most probably that you were infected, and your body fought back (created antibodies), but that it was long enough ago that the bacteria have burrowed deep and built their biofilm barriers and your immune system can't find them anymore. The immune system has turned down the heat, so to speak, and is no longer actively creating antibodies to fight this enemy, because it doesn't know that the enemy is still there. That's why the band is light, because your body is not currently producing large quantities of antibodies. These spirochetes are especially nasty that way, hiding from our immune systems. Anyway, since you have the symptoms, it would seem likely that you still have the bacteria, but it's hidden from your immune system.
My suggestion would be to get a copy of those test results, find a Lyme-literate doctor, and make an appointment to have both the results and your symptoms reviewed. If you haven't already, it can be helpful to write down your symptoms daily for a couple weeks and take that with you. And note everything, no matter how trivial it seems - I know I didn't recognize quite a few symptoms as symptoms.
Good luck to you - and remember it's worth it to get rid of this (and it's possible)!
My official test results do not pass the CDC requirements either, and I also had Lyme-specific bands that were not "dark" enough. My LLMD (Lyme-literate MD, specialist) looked at the bands, said these bands are proof that I have at some point been exposed to and created the antibodies against Bb (the Lyme bacteria), plus I have had many opportunities to be exposed to ticks and tick bites, and I have lots of symptoms that point to Lyme infection and disease, and I've had them a long time. Therefore, he is treating me. 5 1/2 months in, I say with certainty (despite my test results) that I have Lyme disease. And we are slowly beating it back.
Those bands that are present but "light" indicate most probably that you were infected, and your body fought back (created antibodies), but that it was long enough ago that the bacteria have burrowed deep and built their biofilm barriers and your immune system can't find them anymore. The immune system has turned down the heat, so to speak, and is no longer actively creating antibodies to fight this enemy, because it doesn't know that the enemy is still there. That's why the band is light, because your body is not currently producing large quantities of antibodies. These spirochetes are especially nasty that way, hiding from our immune systems. Anyway, since you have the symptoms, it would seem likely that you still have the bacteria, but it's hidden from your immune system.
My suggestion would be to get a copy of those test results, find a Lyme-literate doctor, and make an appointment to have both the results and your symptoms reviewed. If you haven't already, it can be helpful to write down your symptoms daily for a couple weeks and take that with you. And note everything, no matter how trivial it seems - I know I didn't recognize quite a few symptoms as symptoms.
Good luck to you - and remember it's worth it to get rid of this (and it's possible)!
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