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sciteacher
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I have been sick for 8 years after being bit by a tick, with various body systems affected. Most recent is extreme neck pain and foot pain , tailbone pain, brain fog, and cyclic chronic fatigue (more on now than off). I recently took a lymes test on the EIU test it was extremely high and results were positive. Western blot only IgM band 41 was present. I keep reading that IgM is early in the disease. Why would it show 8 years later? what does that mean? Rachel I can do all things through Christ who strengthens me. Phillipians 4:13 _________________ Take time each day to laugh, even if its at yourself.  _________________ We should seize every opportunity to give encouragement. Encouragement is oxygen for the soul. --George M. Adams _________________ Life is not a problem to be solved, but a gift to be enjoyed. --Joseph P. Dooley |
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fluffyluggage
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Rachel, I can't answer your questions, but I can tell you that LD is a clinical diagnosis, and it sounds like you need to seek an LLMD. I also wanted to welcome you to the community, and to say HI! So, hey!!  What I mean when I say clinical diagnosis, I mean that lab tests are unreliable, so in order to diagnose the disease, labs should be used more as a back-up, and not to make an official diagnosis. The diagnosis should be made based more on your symptoms and a physical exam, but not simply your lab tests. You should really consider seeking out the help of an LLMD, or a Lyme-Literate MD. The group leaders here can help you do that. Jaime's the one I know of who keeps the list, tho Tom, Connie, and Clayton may also have it, too! I'm sorry you've been sick for that long, but I can tell you there's hope. I've been sick for 14 years, and I'm still hanging in there. My best friend's been sick for 28 years, I believe...So, hey, we can all get through this! Just know you have support here. If you need anything, let me know. I have compiled a list, along with the help of so many of our members, of some great resources for info that will help you learn more. If you're interested, please send me a PM, and I'll get it together for you, K? If you just want to chat or vent, feel free to send me a PM, too! *hugs* and here's hope for all of us to get better! Jen Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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sciteacher
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I live in louisiana and have an appointment with a llmd on dec 1. I keep hearing that the possibility of lymes in louisiana is low. Is that true???I can do all things through Christ who strengthens me. Phillipians 4:13 _________________ Take time each day to laugh, even if its at yourself. _________________ We should seize every opportunity to give encouragement. Encouragement is oxygen for the soul. --George M. Adams _________________ Life is not a problem to be solved, but a gift to be enjoyed. --Joseph P. Dooley |
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fluffyluggage
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Aw, what a load of crap! That's what docs would like you to think, that they've somehow gotten rid of all the ticks in a certain state. They tell you that the incidence of Lyme in your particular state is low. That's bull! Don't listen to any of that junk!!! It's all bull! Good luck at your LLMD appt. It's great that you have one scheduled so soon! Keep us updated and let us know how it goes, k? P.S. There are all sorts of posts around here about "ain't no Lyme in (insert state)." Take a look around. I think Beauty4ashes did a lot of research and found a bunch of links that show the incidence of LD in all sorts of areas. You can check out maybe her diary, or some of her posts re: incidence of lyme in certain areas. She's got a lot of info on it. Either that, or PM her for some of those links. Trust me, it's whooey!!  Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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sciteacher
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Tell me if the following symptoms I have experienced are similar to lyme's symptoms. Painful joints, muscle cramping, anemia, blood in urine, chronic fatigue, blurred vision, brain fog, attention deficit, sore muscles, severe pain in neck and feet, back pain, restless legs, twitching muscles, air loss, severe headaches, increased allergies, decreased hearing and ringing in the ears, slurred speech at times, eye pain and spots, GERD, fluctuations in bowels constipated, then upset stomach. Pain in ribs or under ribs on the right side, pass out occasionally, PVC;s pin prick feeling in feet and hands, itchy skinI can do all things through Christ who strengthens me. Phillipians 4:13 _________________ Take time each day to laugh, even if its at yourself. _________________ We should seize every opportunity to give encouragement. Encouragement is oxygen for the soul. --George M. Adams _________________ Life is not a problem to be solved, but a gift to be enjoyed. --Joseph P. Dooley |
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fluffyluggage
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Yes, on and on and on and on! They also are consistent with some of the co-infections. I think you may want to read up on some of the information I've gathered? You definitely belong here, my dear! Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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PegB
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Well, I've been diagnosed with Lyme (positive tests, as well as clinical diagnosis) and I have virtually every one of your systems (at different times) with the exception of increased allergies, and passing out. I was diagnosed at the end of July and have been reading, researching ever since. Your symptoms are pretty classic for Lyme. That said, those symptoms occur with other illnesses, too, but I'll bet you'll have a number of people on here with same symptoms. I think there may even be a link on this website of various symptoms for Lyme. There are a lot.Quite a bit of variance in the way people suffer, but the neck pain, overall aches, fatigue...very common for Lyme. I live in the panhandle of FL and "they" claim it's nonexistent here, too (that wouldn't do much for the tourism here, now would it?). Riiiiight. It's everywhere. It's good you'll be seeing an LLMD soon. Don't know much about interpreting testing...my doc said the Igenex test was positive and that was good enough for me. Welcome and best of luck to you. - Peggy |
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sciteacher
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what is the Igenex test??? I keep reading about that test. Is it a particular lab that does it. My tests were done by Labcorp both in Birmingham, AL and Burlington, NC.I can do all things through Christ who strengthens me. Phillipians 4:13 _________________ Take time each day to laugh, even if its at yourself. _________________ We should seize every opportunity to give encouragement. Encouragement is oxygen for the soul. --George M. Adams _________________ Life is not a problem to be solved, but a gift to be enjoyed. --Joseph P. Dooley |
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cmany
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LabCorp is one of the few labs that does the CD57 test - which is a test of the immune system. It however can be inaccurate is better used by a doc to see how far the disease has progressed, i.e. depleteing the immune system - unfortunatly, it is not reliable as a diagnostic test, as not everyones immune system has been comprimised...at least not at the time the test has been done. Igenex - is probably the best lab for actually testing for Lyme. It reports the necessary bans for diagnosing lyme. I believe its reputation for co-infects is good too. I personally have never gotten a positive WB, only borderline years ago. I did have the CD57 done, and my numbers were low...indicating that my immune system is depressed. We started this quest when I was 13 - was bit when I was 7. The first WB was done when I was 17. That was my borderline, and my mom pressured that particular doc to give me 3wks IV Rocephin. But never again did I test positive - so I stopped having the test. As my symptoms were classic, and I found the docs who knew what they were looking at. And I responded accordingly to abx therapy. You have to educate yourself, along side you LLMD...there is so much BS out there about this disease. Find the truth and you will find your way to feeling better. This is a great site for both support and information. Good Luck - and I always have an open ear! 
Christine I know what I am and I know what I am not
Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing |
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sickinwis
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Rachel, I have read that Igm levels can repeatedly peak even with long term lyme. I know in my case it did. Barb |
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