Aa
LLMD in or near NYC
Hi, I was visiting my doc's for a routine exam and bloodwork. The PA asked if she wanted me to go over my old blood work. She did. Among those papers in Aug 2010 I had requested a lyme test because I found a tick in my neck a month earlier. THAT tick turned out to be a wood tick, not engorged, and easily removed, so it hadn't been there long.
The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
WhaaaaaaaaAAAAAAAA???!?!?!?
So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.
I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?
Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.
The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
WhaaaaaaaaAAAAAAAA???!?!?!?
So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.
I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?
Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.
Dunno. The tests are so squirrely and so different from different labs and so different in the same person from test to test that it's all a big mess. I haven't looked closely at the IDSA standards for a while, but they have a website, I think. Not sure anymore.
I had blaring symptoms of Lyme and took a western blot which the doctor said I am in remission. I have lesions on my brain per brain MRI and my memory is really bad plus I was in Texas, over medicated, so I went on my Texas Lyme support group and this Doctor from another TX town who has the same neuro Lyme symptoms as I have, called me so worried and told me you are not in remission with all those active symptoms, get the heck out of here (TX) and find an LLMD. So the Western Blot can give false negatives. I am now in FL and seeing an LLMD.
Good luck and hope you find an LLMD who can lead you in the right direction because it is a very difficult disease to treat and one must be patient, especially for people like myself and others I know. One had no positive tests for 12 years. Others took 2 years,so pursue on. Feel Better.
Good luck and hope you find an LLMD who can lead you in the right direction because it is a very difficult disease to treat and one must be patient, especially for people like myself and others I know. One had no positive tests for 12 years. Others took 2 years,so pursue on. Feel Better.
Sorry about missing a word. (I think I need a proofreader!). I meant that a Western Blot rarely shows a FALSE positive, according to LLMDs. And thanks...I am better in some symptoms today, but not others.
Let's see if I'm more clear today in my typing! ;)
The screening test is the first step in the CDC recommended "two tier testing" process. First, they run a screening blood test, either an ELISA or an IFA. Only if that test is positive do they run the Western Blot.
The problem is that with the screening tests, LLMDs say that only about 50-60% of Lyme patients correctly show a positive. ILADS docs believe that immune responses and genetic variations of the bacteria lead to more false negatives than were originally believed.
This happened to me. I was negative on my CSF test (only about 10% of Lyme patients are + on this test) and on the screening test. I didn't get a Western Blot until I asked my sympathetic GP to authorize tests at IGeneX. IGeneX uses a more liberal interpretation of the results and said my IgM WB was positive, even though the CDC criteria said I was negative. It's highly unlikely an Infec. Dis. doc would ever agree that I have Lyme. My immune system didn't get the memo on how it was supposed to perform.
And on the issue of which ticks carry it...this has also been controversial. In the south, they have the Lone Star tick and even though people have gotten Lyme from these ticks, the IDSA still insists that only Ixodes ticks carry it. Jackie's comment about Erlichiosis made me wonder if HME or HGA or even Babesiosis or Mycoplasma could be possibilities for you. They're called co-infections as they often go along with Lyme. But you can also get them without having Lyme. (I have Bartonella as a coinfection.) I think they can all cause the headaches, fatigue, and dizzyness. I don't know if dog ticks carry these, but I wouldn't say never.
And who knows, maybe your immune system has been holding off a case of Lyme for a while and it is "old.". Doesn't mean it's gone, though.
A spect scan shows blood circulation in the brain. Most symptomatic Lyme patients will show reduced flow in certain areas. I already had an MRI that showed about 20 small lesions in my white matter. I didn't need the Spect to convince my LLMD I had Lyme.
Few LLMDs do LPs anymore as they're invasive and rarely helpful.
A floater is a speck in your vision that persists for a period of time and seems to float just out of reach. Mine were light colored and not in my direct vision. They would hover and "float" like a gnat for several seconds or even a minute or two. I only had 1 or 2 before diagnosis. I had far more after I started Abx. I even developed two new variations... One I called "a fountain of sparkles" right after a big coughing fit. The other was a dark, fast moving speck in my peripheral vision, like a bug zipping by and then disappearing. I had the dark "bug" a number of times for a week or two. I haven't had any floaters in at least a month, so I think they're gone.
Let me know if anything I typed doesn't sound right. ;)
Let's see if I'm more clear today in my typing! ;)
The screening test is the first step in the CDC recommended "two tier testing" process. First, they run a screening blood test, either an ELISA or an IFA. Only if that test is positive do they run the Western Blot.
The problem is that with the screening tests, LLMDs say that only about 50-60% of Lyme patients correctly show a positive. ILADS docs believe that immune responses and genetic variations of the bacteria lead to more false negatives than were originally believed.
This happened to me. I was negative on my CSF test (only about 10% of Lyme patients are + on this test) and on the screening test. I didn't get a Western Blot until I asked my sympathetic GP to authorize tests at IGeneX. IGeneX uses a more liberal interpretation of the results and said my IgM WB was positive, even though the CDC criteria said I was negative. It's highly unlikely an Infec. Dis. doc would ever agree that I have Lyme. My immune system didn't get the memo on how it was supposed to perform.
And on the issue of which ticks carry it...this has also been controversial. In the south, they have the Lone Star tick and even though people have gotten Lyme from these ticks, the IDSA still insists that only Ixodes ticks carry it. Jackie's comment about Erlichiosis made me wonder if HME or HGA or even Babesiosis or Mycoplasma could be possibilities for you. They're called co-infections as they often go along with Lyme. But you can also get them without having Lyme. (I have Bartonella as a coinfection.) I think they can all cause the headaches, fatigue, and dizzyness. I don't know if dog ticks carry these, but I wouldn't say never.
And who knows, maybe your immune system has been holding off a case of Lyme for a while and it is "old.". Doesn't mean it's gone, though.
A spect scan shows blood circulation in the brain. Most symptomatic Lyme patients will show reduced flow in certain areas. I already had an MRI that showed about 20 small lesions in my white matter. I didn't need the Spect to convince my LLMD I had Lyme.
Few LLMDs do LPs anymore as they're invasive and rarely helpful.
A floater is a speck in your vision that persists for a period of time and seems to float just out of reach. Mine were light colored and not in my direct vision. They would hover and "float" like a gnat for several seconds or even a minute or two. I only had 1 or 2 before diagnosis. I had far more after I started Abx. I even developed two new variations... One I called "a fountain of sparkles" right after a big coughing fit. The other was a dark, fast moving speck in my peripheral vision, like a bug zipping by and then disappearing. I had the dark "bug" a number of times for a week or two. I haven't had any floaters in at least a month, so I think they're gone.
Let me know if anything I typed doesn't sound right. ;)
BTW what's a "floater" regarding vision?
I hope you are doing much better today. It sounds like you are which is very encouraging!
What does a SPECT scan involve? Gee, if what you say about the spinal tap is true then I'm actually thankful. That seems like an extreme measure of a test. No one wants chronic lyme but a tap is no fun either.
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
