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    Old 07-08-2010, 12:46 PM   #1
    goingcrazy8
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    Understanding Lyme Tests

    I had a western blot done and my doctor said it was negative. Afterwards I asked to see the results and it was bands 23 & 41 absent, but band 39 was present. I have long suspected Lymes, but it looks as if this isn't the case. Any idea why I would test positive for one of the 3 specific bands? Thanks, GC8

     
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    Old 07-13-2010, 01:57 PM   #2
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    Re: Understanding Lyme Tests

    hi GC8,

    i'm not sure of the specifics of each band, but 39 is definitely one of the ones required. it does state on the IgeneX results that even if one (1) band is positive in a negative report that it may indicate clinical significance. you should be retested with another method and/or retest in 4-6 weeks. btw, was it present in both the IGM and IGG results?
    heather

     
    Old 07-15-2010, 06:26 AM   #3
    goingcrazy8
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    Re: Understanding Lyme Tests

    Thank you for the reply. I ordered an iGenex test and got it, I'm now just looking for a doctor to order the lab work for me. My existing GP thinks I'm crazy. It was just in the IGM.

     
    Old 07-28-2010, 07:52 AM   #4
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    Re: Understanding Lyme Tests

    no problem. most of the mainstream doctors see black and white and aren't willing to do anything "exotic", as my dr said. definitely find a lyme specialist to help you. you're NOT crazy. the disease is crazy! best wishes to you. let me know how things went with the igenex test if you have a chance.

     
    Old 07-28-2010, 05:45 PM   #5
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    Re: Understanding Lyme Tests

    Going Crazy:
    Just curious - what are your symptoms? I just had the blood work done by MDL. My insurance would not cover Igenix. i hope my results are correct. Won't know for another two weeks. LaLa

     
    Old 08-02-2010, 10:49 AM   #6
    goingcrazy8
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    Re: Understanding Lyme Tests

    My symptoms are very broad and seem to change over time. I have shortness of breath/chest tightness which comes and goes and am lightheaded when I stand for awhile. I get these surges in my body and have palpitations for weeks at a time that will go away and then come back. I have brain fog or trouble concentrating and have also had stomach problems and groin pain. I've been sick for about 18 months now.

     
    Old 08-02-2010, 10:50 AM   #7
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    Re: Understanding Lyme Tests

    One more thing, I have heat/cold intolerance which seems to aggrivate all of my symptoms.

     
    Old 08-02-2010, 11:45 AM   #8
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    Re: Understanding Lyme Tests

    goingcrazy:

    I am going crazy. I got my results back from mdl and everything was negative. I am not covered for igenix. Dont know if I should pay a fortune out of pocket or not. Don't know if Igenix is any more accurate then mdl. I got a result back on something else that i was a nervous wreck over. Since i went to an infectious disease dr he checked my for syphlis because they say that they symptoms can be similar. The titer for came back positive, but very low and the other part of the test came out negative. According to my internist and the department of health, I don't have it. I highly doubt i do. I have not been in that many relationships. But they say that the test has a lot of false positives. But they also say you can have that positive part positive do to another infection in the body such as lyme or some autoimmune diseases. So i am still at square one not knowing whether i have lyme or an autoimmune disease. I have been to reumotologists in the past and nothing showed up. I think I am going to have to go to another one. The infectious disease dr also is rechecking the syphlis. This was a big thing. I was literally a nervous wreck over this. I found out Friday and all weekend i felt worse then ever. I think the stress of it triggered my immune system big time. My head is tingling like crazy. What are you doing about your lyme? Any medications? Hope all is well with you. At least you have an answer. That is the first step. Talk soon. LaLa

     
    Old 08-02-2010, 02:47 PM   #9
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    Re: Understanding Lyme Tests

    Hey LaLa, I'm not sure 100% I have Lyme, one of the major bands came back positive, but my doc thinks that is a false reading. I'm on the fence on the Igenex testing, I've been contemplating it myself. You say you have head buzzing, I have that too although I don't consider it one of my major symptoms. I'm not sure if I've been tested for Syphilis, but I've been with my wife for 5 years, so I highly doubt it, plus I just had 2 kids and I believe my wife was tested both times. I'm not sure you would be scared about that though, any diagnosis is better than no diagnosis I would think. My fear is that I will never feel normal again. What are your other symptoms? One thing that I feel is important is knowing your symptoms and really being able to describe them. This goes a long way with the doctors.

    Here is how I would describe mine.

    - Shortness of breath - I feel like I can't get a deep breath, which causes me to panic and get dizzy. Air hunger. Not constant, comes and goes probably 1-5 times a day in varying degree. Caffeine and Alcohol are triggers.

    - Chest tightness - I can feel my muscles ate extremely tense. I actually feel a squeezing pressure in the upper/middle part of my back. Again it varies in degree from almost non existent to moderate pain. Not sharp.

    Neck Tension- Can almost constantly crack my neck. I occasionally catch myself non consciously tensing these muscles. Makes me lightheaded sometimes and makes my neck and head tingle. Almost like a buzzing under the skin.

    Dizziness- A lightheaded feeling which is almost always there excluding the 30 minutes or so after I wake up. Again varies in degree from moderately annoying to confusion/disorientation and the need to sit down.

    Heart Palpitations- Come and go. I get them out of the blue and once I have one I will likely have 2-5 more in somewhat close succession.

    Groin Pain - Comes and goes it's worse at night and if I've been on my feet all day. Mild to moderate achy pain.

    Those are my major symptoms although they vary, I am seeing an allergist next week, bc they think this all might be from my move south. I'm originally from upstate NY where the allergies aren't bad and here in Knoxville they are a nightmare.

    Tell me more about you and maybe I can help. I've had a million tests done now.

     
    Old 08-03-2010, 08:14 PM   #10
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    Re: Understanding Lyme Tests

    Goingcrazy:
    I would have responded to you last night because i normally live on this computer since i got sick but i was so sick that i decided to try to stay off of all this crap for the night and think about something else in hopes i would feel better. To no avail. Anyway, before i get started with my story i just want to address yours. Living upstate NY i guess you might be susceptible to ticks but they say you can get a tick bite anywhere. Some of your symptoms sound like they can be from allergies but groin pain? Also if coffee and alcohol are a trigger maybe you should stop them until you are sure they are triggers. I don't understand why alcohol would give you shortness of breath. It is a possibility that you have more allergies living in a different environment but i am not the expert with allergies. I have never had them. I guess you will have to see what the allergist says. Ok!!! Now you asked for my symptoms? The story and list is very long. It all started about 9 years ago. I was in a very bad depressed state. Then about 6 years ago I got divorced. That was my mistake. It all went down hill. As i said, i was very depressed. But i felt healthy. I was going out a lot and i was drinking and smoking cigarettes and eating lots of sugar. But even though i was depressed, i was out having fun to get my mind off things. About 4 1/2 years ago I caught a virus from somebody I new. I never recovered. Now, i specifically know that i caught this bug. It did not come out of nowhere. It started with some kind of upper respatory infection. I was on an antibiotic. BIG MISTAKE. I felt extreme fatigue after that and my body just felt very sick. Kind of flu like. No energy. Could barely get out of bed. Kind of like an epstein barr or a chronic fatigue type thing. Went to several drs. No answers. A few months after that, i started to get severe stomach problems. Started with gurgling in my stomach non stop. i had some diarrhea. That stopped after a few days, but i developed chronic gas. I cant begin to describe to you how much gas. All day everyday. I went to several gastro drs. had colonoscopy and all other kinds of tests. Nothing. Except i have a hiatal hernia (which i new about) a little acid reflux. I went to a natural cr chiro/kinesioglist and he disagnosed me with candida. Overgrowth of yeast in the intestines. Started on anticandida meds and pro-biotics. And the biggest thing was no carbs at all. That was very difficult. No sugars, breads, pastas, cookies, candy, alcohol, etc. Basically just veggies and protein. Horrible. After 8 weeks of that i felt a little better. He also had me on some vitamins. B vitamins and folic acid and a good multi and something for the adrenals, etc. I went on a cruise at that point and ate everything. Guess what, sick again. The saga continued. But that was only the stomach problems. I had lots of other things. Chronic feeling of ill. Occassionally low grade fevers. Joints felt somewhat achy. Lower back pains, sometimes felt like a had a cold, then i started with chest pain. Went to a cardio dr. he did all the tests. Everything was fine. Went to two reumotologists because i felt maybe i had fibromyalgia or chronic fatigue syndrome. I also just felt weird. Like almost internal trembling. Nervousness but inside. I also got into panics every time i got a chest pain. I think i go to the cardiologist on a average or twice a year because of chest pain. He tells me each time that it is digestive. I suffer with severe indigestion also. Also like you, i have shortness of breath. I have had that off and on most of my life, but lately it is everyday off and on and i almost feel like my lungs hurt. I don't know if its do from acid reflux or something lung related. Because sometimes the middle of my back also hurts. In between my shoulder blades. I have also been coughing a lot since the breathing issue. I know exactly what you mean. It is called air hunger like you said. About a year ago, i started with tingling on the top of my head and neck pain. I was real nervous about that. Went to two different neurologists and had an mri of the brain and neck. All i have is a herniated disk on the spine. Probably not causing the tingling. Went for massage therapy. Did nothing. Went for accupunture. Slighly helped, but not covered and expensive. I have spent a fortune on all this stuff. I also forgot to mention I did colonics for the stomach problems. That did nothing. Also have balance issues. Feel like i am walking on a slant. Again, off and on. Everything is off and on. I have been to so many drs. I don't even remember them all. A few months ago, i went to a new natural dr. He was excellent. Put me on antivirals. He said i have a virus and a bacteria and i was dehydrated. He wants me to drink 5L of water a day. I get to at least 4L. Sometimes 5. i love water vut 5L is a lot. I am a small person. I weigh under 120 and am 5' 4". He helped me a lot but still 100%. After spending thousands of dollars already. I am not covered for him. Still searching. Went to the infectious disease dr like i told you. Everything for lyme came out negative. Don't know if i should go to igenix. Expensive. Not covered. Then he told me about the sphylis. Put me in such a panic, because how do i explain that to the person i am in a relationship with for many years. He will not trust me. I did not cheat on him. I have not had that many short term relationships in my life. But we had broken up for a little while and I had a very short lived relationship during that time that my boyfriend kind of knows about but i told him i never had sex with him because he would have been detroyed. Anyway, i get this result and it put me in the worst panic state i have ever been in. It set off my immune system again and i have felt horrible again since Friday when i got the results. In the meantime i think it was a false positive and i probably don't have it. I did not have the course that that disease really takes. But lately i have been having such breathing problems and such major indigestion that I am now going back to the gastro dr tomorrow and another new reumologist on thursday because of something that showed up on the blood work for the infectious disease dr. I also found out that a positive sphylis test can indicate another problem in the body such as lyme, infections, autoimmune disease. So i am not convinced i don;t have lyme. I is very hard to put all this down on paper. There is just so much that went on the the past four years that i have not even mentioned. I think i gave you the jist for now. More will come to me later. I also have some groin pain. I am not reallly that tired, so that is another problem. Because some of the conditions people are so fatigued. I also have insomnia. Also tmj symptoms. If it is not lyme i am thinking that either the depression and poor eating habits just weekend my immune system and i just can't fight off what ever it was that i had when all this started. I also can't get better because i have so much on my mind and issues in life. Can't get into now. I am so tired. Want to go to bed now. I have constant stress and anxiety over what is wrong with me. It is ruining and running my life. I feel sick all the time. How do you function in life feeling like this. Every is a chore to accomplish. Anyway, i can't write anymore. Let me know how you are doing and we will continue our saga another day. Take care. LaLa P.S. are you sorry you asked my symptoms. LOL p.s there i more also. Just can;t think of them all at one time. Good night

     
    Old 08-04-2010, 07:33 AM   #11
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    Re: Understanding Lyme Tests

    goingcrazy:
    Just wanted to ad a few other things:
    Pain underarms. Not swollen, just when i press in the middle of the underarm it feel sore. Also suddenly in the past year i have somewhat poor memory. Just not as sharp as i used to be. i used to remember everything. Slower thinking also. Pain behind eyes and eye twitching. When the tingling started on the top of head, my right eye twitched off and on for 6 months straight. Also did i mention that once in a while i would have low grade fevers. Have not had that since november.
    The internal trembling that i have once in a while really gets me. Also burning type sensation in my upper back. Sometimes i think maybe all my problems are from depression, but certain things just can't be. This is still not even everything. Anyway, still going crazy. Talk later.

     
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