posted
I have recently been diagnosed with Lyme and I'm still trying to get my head around it. Pardon my ignorance. I am starting to read up on it to educate myself. This seems like a great place to start. My Igenex results were not positive but suspicious:
The results are like reading a foreign language. I undeniably have symptoms of Lyme (severe muscle twitching, migrating numbness, tinnitus, noise sensitivity to name a few). But I have never seen a tick and have no idea how I could have been infected. Because my tests weren't positive and I've never seen a tick, I have a hard time believe I have Lyme. I would welcome any comments. Perhaps someone can enlighten me. Also, I am really curious to know if most people with Lyme actually remember when they were infected?.
Posts: 17 | From Canada | Registered: Jan 2010
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posted
Yes. I do. I had a bulls eye rash after a camping trip the summer of 1994. Symptoms of swollen knees and vertigo attacks followed in the months after.
My tests were always negative and I was never treated until just over a year ago.
Unfortunately, I did not know what the rash meant until a year had passed.
First Lyme test was 3 years later (1997) after my 2nd vertigo attack and misdiagnosis of Meneire's Disease when the "Lyme titer to r/o chronic Lyme" was negative. That was the actual wording on my chart when I got my records 3 years ago.
Every doctor over the next 15 years tested me for Lyme based on my symptoms. I never had a positive despite the bulls eye rash.
How I wish I knew then what I know now...
Posts: 819 | From East Coast | Registered: Apr 2009
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I tested positive for Lyme, but never had a bulls-eye rash, never found a tick engorged, and did not have a fever.
My only symptoms in the beginning were extreme fatigue, sore lymph nodes, and painful joints. I thought I just had the flu and went to my Primary Physician. He ran a test and I tested positive. Each persons initial symptoms are different.
It is also very important to test for other pathogens (called co-infections) ticks transmit that can also make one very ill.
Here are some information that would be good to print and read:
posted
We're all different when it comes to the question of whether we saw any ticks.
I did. It was in my foot a week. I went to a health clinic a week later, saying something's in my foot. They said, "It's a tick, we'll take it out." So they did and I forgot about it.
Ten weeks later, my first symptoms were sore shoulders and a stiff neck, and I thought it was due to my work.
15 months later, I had head-to-toe muscle pain, called fibrocitis, with the term changed to fibromyalgia in 1990. No one knew what it was.
I developed symptom after symptom throughout the years, never knowing what any of it meant. Or rather, I had a wrong interpretation of every symptom.
Because I saw the tick, I'm clear about what happened to me and I can date every symptom, as in it took this long after the bite for this symptom to develop. In that way, it makes it all clearer for me than those like you who never saw anything.
Adult females will feed for up to 10 or 11 days. Nymphs, however, will feed and drop off, I think within three days. That's why so many people are confused.
Then there's those who may have been bitten by other bugs, or contracted it via human fluids and tissues, including being born with it.
I want to go back to your question about how you became infected. There's nontick transmission possibilities, as I just mentioned.
And ticks are in vegetation and on wood, on animals(our pets), in animal nests, etc. Just brushing against a blade of grass where they are can do it. So I guess just think back on where you've been and see whether anything rings a bell.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I never knew I had been bitten but was diagnosed with rocky mountain in 2005 from symptoms and labwork then was diagnosed with Lyme last year so for me it was 2005 and or anytime since......but no tick or blls eye that i knew of......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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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.
58: Heat shock protein.
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.. ----------------------------------
Here is his update written sometime around 2005.
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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.
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Are you sure neither of your tests said Positive??? You have several lyme specific bands.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I don't know exactly when I was infected because I was a child with probably no less than 100 tick bites over a span of at least 10 yrs. This was before they knew what Lyme disease was.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I never saw a tick or a rash.
I remember a flu-like illness followed weeks later by an ache in my hip followed weeks later by all-over throbbing joint pain followed by fibromyalgia pain....occured over the course of several months....22 long years ago and diagnosed only as fibromyalgia until one year ago.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thanks so much everyone for all of the responses. I have a lot of reading to do. It helps to know that there are others who don't know where or when they were infected.
Lymetoo - Thank you for your very thorough answer. In answer to your question (Are you sure neither of your tests are positive?). I had the tests done at Igenex and was told that in order to be positive, I needed a positive result on two double starred bands. I was ++ on 34 and IND on 41 (both double starred bands). I was ++ on Band 18 too although it is not double starred. My initial tests done at my doctors office in Canada were negative.
As I said, it is very confusing to me. I am just beginning to read up on all of it and educate myself but some of it is over my head. The one thing I did learn was that Band 34 is 95% specific for Lyme and for late disease (a year or more) and that some doctors treat on being positive on this Band alone.
Posts: 17 | From Canada | Registered: Jan 2010
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