These tests don't directly look for evidence of Lyme bacteria in your blood, but instead look for evidence that your immune system is reacting to Lyme. (It's like knowing you're in a bad part of town if you see a lot of cops, even if you don't see any bad guys.)
There are two tests that look for evidence that your immune system is reacting against Lyme bacteria: one looks for a recent infection (IgM) and the other for older infection (IgG). These are 'immunoglobulins' (Ig), the evidence of your immune is working to kill the invaders.
IgM is produced against a relatively recent infection; IgG is produced against a relatively older infection. There is no magic cut off date when the IgM stops being made and IgG starts being made, so both are tested for as a general indicator of how long you have been infected, if you are infected.
The results on the test are called 'bands', I think because of the way the test results look in the lab. Some of the bands indicate your immune system is reacting to Lyme and only Lyme; other bands may or may not be Lyme.
Band 41 may or may not indicate Lyme.
Band 23 definitely indicates Lyme and nothing else.
Some docs won't diagnose Lyme unless there is a high number of certain bands; those docs who specialize in Lyme, tho, tend to read the test results less strictly, and read them in light of your symptoms.
The tests are really not very good, and Lyme docs know that, but nonLyme docs are in the habit of having highly sensitive and specific tests for other things, and so if the Lyme tests don't come back screaming LYME!!!, then the docs reject Lyme as a possibility.
There are other tests too, one called a PCR test that looks for actual Lyme bacteria DNA in your blood instead of looking for the reaction of your immune system. Some docs don't use the PCR test, others do.
Thanks for response. I had the Lymes test along with a lot of other bloodwork. Nurse called and said "everything looks good" I asked for a copy and picked it up today and I see that these 2 were "reactive" and rest say nonreactive. Dont know how much experience my PCP has with Lymes. Is this something I should follow up with a specialist? Why would some be reactive if I didnt have it?
There is a split in the medical community about how serious Lyme is or isn't, about how to diagnose it (including what test results mean), and about how to treat it and for how long.
You'll see the term LLMD: it is not an official term, but instead one we patients use to mean an MD who thinks bigger thoughts about Lyme than other docs. It's short for 'Lyme Literate MD.' An LLMD reads the test results more generously than nonLLMDs, and also takes into account your history and symptoms.
If you do have Lyme, it's possible you also have one or more other infections (called generally co-infections) often carried by the same ticks, and nonLLMDs often do not test for those or take them seriously.
The nurse who told you everything was fine sounds like she is following a nonLLMD approach, which requires a higher number of positive bands on the tests you had to consider Lyme. Why would she ignore the positive band that indicates only Lyme? Because that's the standard set up some years ago for diagnosing Lyme. Those old standards were meant to track the spread of Lyme through the country, so the standards for saying someone actually has Lyme were set very very high, to avoid counting people who didn't really have Lyme. Unfortunately, nonLLMDs still use those very high standards for simple diagnosis, meaning they miss a lot of infected people. (It would be like saying that to have the flu, you must have a fever of 103, you must pass out, and you must hallucinate. If you 'only' have two of those symptoms, you would officially not have flu -- when clearly you do, you're just not showing all the possible symptoms.)
This is a good lesson for us all: ALWAYS get copies of ALL test results and keep a personal file, allowing new docs to photocopy old tests if they are interested in having them, but get back your own copy. You never know how a new doc might interpret what a former doc thought was nothing interesting....like this test of yours.
I'm not medically trained, but I did have Lyme and a coinfection, and it took me 20 docs to find out about LLMDs. That was when I was properly tested and treated.
I would, in your situation, find a Lyme specialist, take copies of your test results, and find out what's up. The tests are far from perfect, but assuming that you have not been feeling well (you don't say the reasons the doc ran the test in the first place), I would find an LLMD. If you need help locating one, let us know. In some states, LLMDs are harassed by local medical boards, so we don't post names openly here, but we can help you find someone.
Thanks Jackie, I have been complaining for probably 3 -4 years about fatigue. 2 years ago I was diagnosed with thyroid cancer and had my thyroid removed. My fatigue, anxiety and depression have gotten worse since then. I have extreme activity intolerance, shortness of breath with minimal activity, heat intolerance, chronic sore throats and sinus drainage. Often have low grade temp., muscle weakness and days where I literally feel like I will collapse. I have seen pulmonary dr., neurologist, cardiologist, as well as my endocrinologist for my thyroid cancer. They all seem to blame it on my thyroid (less) problem but I am not convinced. Problems started before that. I also have seen an ENT for dizziness, vertigo and tinnitus. I tell all of them "I know something is being missed. I cannot feel this bad at my age". I am 44. I know there are more symptoms but these are my main ones. Oh, also numbness and tingling in my hands and feet and constant edema from my feet to my knees. I would appreciate it if you could refer me to a specialist in my area. I am near Pittsburgh, PA. Any guidance would be appreciated. I have learned in the past couple years that you have to take control of your own healthcare...
Well, you didn't mention any symptom that I haven't heard at least one person with Lyme+ (meaning Lyme and coinfections) mention, and it affects everyone differently, which is partly why it confuses regular docs.
I heard someone say once that a symptom of Lyme is having seen a dozen docs and still no diagnosis that makes sense. Sadly, it's true, so you're in good company.
I just searched on google for 'LLMD pittsburgh pa' [but without the 'quotes'] and got a whole bunch of leads, so I'd suggest trying that. The first lead was this one:
chronic lyme disease [dot] com / llmd - referrals
You'll have to take all the spaces out of that string and replace [dot] with a period, then you can search for it. The page it will take you to has a good, short explanation of the oddities of finding a Lyme doc and why it's that way. The fellow who wrote the page is not a doc, but is a really smart guy who had Lyme and got interested, and has now written a ton of books etc. on the topic, so he's very interested in Lyme and that page that the link above will take you to is good advice about finding a Lyme doc (no need to buy any books from the site). That page also has several links to help find an LLMD near you.
I also just searched 'pennsylvania lyme literate doctors' and got a bunch of hits there too. Maybe you don't have Lyme, but it's worth finding out, imo.
One of THE best LLMD's is in Washington DC. His name is Dr Jemsek. He will treat you for not only Lyme, but coinfections of babesia, Bartonella, Rickesettia and Mycoplasmas as well. You are not crazy, you have come to the right forum and we will help you along the way.
I am on the mad hunt as well, to see if what I actually have is lyme. I do have Graves Disease and since I had RAI to treat it, I am now back and forth with hypo and hyper. My neuro symptoms began to progress after I had my first eye surgery in 2007 for thyroid eye disease.
My symptoms were a red flag for MS. I was dx'd with TIA, then I was dx'd with seizure disorder. Right now, my doc's are stumped. MRI's are clear, VEP's abnormal, EEG's abnormal.
At 17yrs. old, 22 yrs. ago, I had Cat Scratch Fever (Bartonella) and had a lymph node removed behind my left ear.
Jacke and ewford are awesome with getting the info. out regarding lyme disease. They both have helped me tremendously with seeing the light.
I wish you alot of luck,
Stay here, it is very helpful information.
Thank you all for the responses. I will check out the LLMDs in my area. I am still confused though as to how you can have 2 reactive bands and a dr. wouldn't want to investigate more. I am so very tired and frustrated.
I think part of that reason the tests are read so strictly is that the standards for a disease are established by those most familiar with the illness, which in the case of an infectious disease ("ID") is the Infectious Disease Society of America (IDSA), which is a group that docs specializing in infectious diseases can belong to to stay up to date on developments in the field, just like any profession has its professional groups.
Those groups and the standards they set are viewed as the authorities on their area, so docs both in the field of ID and outside of it all looked to the IDSA to say how to properly diagnose Lyme and to treat it. That's how medicine works, and it's reasonable.
The problem arises in a fast-changing area of medicine if a group of docs gets their heads stuck on one point of view and they cling to it. This has not happened in AIDS, which has been full of breakthroughs in the 30 years since AIDS was first identified here. Unfortunately, medicine does not always live up to those standards of scientific integrity.
For example, for decades, anyone with a stomach ulcer was told it was 'stress' and they needed to chill out and they would get well. It was not until *2005* that a Nobel Prize for Medicine was award to two Australians who proved that ulcers are caused by a bacterium and could be treated. Until then, if you had an ulcer, it was your own darn fault for being too stressed. Riiiiiight.
So medicine isn't perfect, and not only is Lyme an emerging disease that is still being researched, but the docs who did the early research on Lyme stopped thinking new and bigger thoughts after their first conclusions. These docs are still high up in the IDSA, and their names are Wormser and Steere, and they have decades of loyal followers who do what docs do, which is look to the 'experts' for guidance in diagnosis and treatment.
Worse, the IDSA and its members don't treat those with other ideas and developments in the field of Lyme research with any respect. Wormser, Steere and their contemporaries have staked everything on being the last word in Lyme, and their views haven't changed much since 30 years ago.
So back to your question of how you can have two reactive bands on the test and a doc says you're okay: it's because that is the standard set by the IDSA, and that standard was originally intended not for diagnosis but for early research, in which the docs were tracking the spread of Lyme for epidemiology studies. In those studies, you want to be sure you count ONLY true and absolute cases of Lyme, so that your data is good, so you set the standards very very high. Unfortunately, the IDSA has not created diagnostic standards for use in the daily practice of medicine that will pick up probable cases of Lyme instead of only the absolute, slamdunk, bulletproof cases needed for scientific research.
So that's why we are where we are. The IDSA wouldn't listen to newer research, which is why ILADS (International Lyme and Associated Disease Society) was created. Their website is at ILADS [dot] org. There are many docs who lean toward the ILADS position, but they keep quiet about it because in some states, the medical board will revoke the medical license of docs who treat outside the IDSA standards for Lyme treatment. That's why we don't post Lyme MD's names here.
Sorry for the long explanation, but that's where we are. Take care, and know that if you have Lyme, you are not alone, and effective treatment is possible.
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