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Old 07-22-2007, 01:16 PM #1 (permalink)
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Default Lyme Results

Just rec'd second set of lyme results from the followup test, after the abx trial of 4 weeks.

Results:

ELISA: Positive
IGG West. Blot: Negative, but Borderline Positive
IGM west. Blot: Negative, but post. bands
DNA: Negative...

Now where do we go?
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Old 07-22-2007, 06:10 PM #2 (permalink)
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Jamie - with the Elisa being positive you are more apt to get some help from the docs. For some reason they believe the crappy Elisa more than the western blot. And besides, with the length of time you have been sick your IgG would have to be positive. IGM is positive when you are first ill, then it switches up to IgG. That's why the docs wouldn't believe mine. I felt completely lost when I got my results because some said it was positive, but the 3 out of 4 of my docs said negative. I hope it is lyme Jamie and I hope you get treatment. Good luck~Leslie
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Old 07-22-2007, 07:51 PM #3 (permalink)
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I hope it is Lyme, too. Jamie. Anything but ALS! Cindy
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Old 07-22-2007, 08:36 PM #4 (permalink)
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Default Treatment/lab

Do you know what lab your Western Blot went to? Also, what antibiotics were you put on? I was clinically diagnosed last year with Lyme, but I too feel like I'm still in limbo on this. ALS/MS/Lyme were the only things that fit many of my numerous symptoms. With several clean MRIs, normal spinal tap, and abnormal EMG, seemed MS was unlikely. I tested postive on 3 bands and indeterminate on 3 bands, but officially a negative test. I'm trying antibiotic treatment one more time. Last time I tried Ceftriaxone, but I developed an allergic reaction to it before finishing the course.

I'm seeing an ALS specialist too, and she doesn't think I have ALS. She is still stumped as to why I would have the damage to my nerves (thinks it peripheral neuropathy), swallowing problems confirmed through barium swallow, head pressure, constant wooziness, loss of appetite,...list goes on. She wants me to try the antibiotics treatment from the other doctor, and if no answers or improvement in a few months, she's refering me to the Mayo Clinic. I have another EMG schedule 7/16. 3 years is a long time without a diagnosis, so I hope that your treatment is the answer you've been looking for. Keep in mind that even after killing the active infection, it still might take some time to recover from Lyme, and there maybe some lasting effects even if "cured" from the bacteria. I hope you get 100% better!
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Old 07-23-2007, 10:08 AM #5 (permalink)
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kman,

i was tested at IGENEx....?

Do you have any atrophy?

I do, this is the only thing that points away from lyme.

I tested borderline on the West. Blot, but, under IGENEx rules, you would have been postitve. Which bands were positive?

What abour your ELISA?

I'm going to see a lyme specalist. Mayo has no clue about lyme, so they will not do you any good. You should see a lyme specalist.

rgds,

Jamie


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Originally Posted by kman543210
Do you know what lab your Western Blot went to? Also, what antibiotics were you put on? I was clinically diagnosed last year with Lyme, but I too feel like I'm still in limbo on this. ALS/MS/Lyme were the only things that fit many of my numerous symptoms. With several clean MRIs, normal spinal tap, and abnormal EMG, seemed MS was unlikely. I tested postive on 3 bands and indeterminate on 3 bands, but officially a negative test. I'm trying antibiotic treatment one more time. Last time I tried Ceftriaxone, but I developed an allergic reaction to it before finishing the course.

I'm seeing an ALS specialist too, and she doesn't think I have ALS. She is still stumped as to why I would have the damage to my nerves (thinks it peripheral neuropathy), swallowing problems confirmed through barium swallow, head pressure, constant wooziness, loss of appetite,...list goes on. She wants me to try the antibiotics treatment from the other doctor, and if no answers or improvement in a few months, she's refering me to the Mayo Clinic. I have another EMG schedule 7/16. 3 years is a long time without a diagnosis, so I hope that your treatment is the answer you've been looking for. Keep in mind that even after killing the active infection, it still might take some time to recover from Lyme, and there maybe some lasting effects even if "cured" from the bacteria. I hope you get 100% better!
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Old 07-23-2007, 01:37 PM #6 (permalink)
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Let's pray it's Lyme.
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Old 07-25-2007, 10:09 AM #7 (permalink)
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I'm praying it's lyme. Sharon
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Old 07-26-2007, 09:26 PM #8 (permalink)
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When I saw my ALS Specialist a few weeks back, she said she didn't see any atrophy. I'm not sure what her definition of atrophy is, but I weigh 20 lbs less than a year ago, and didn't have any fat to lose (I'm 6' 7" and weight 135lbs). My calves probably having atrophied, but I've lost a lot of muscle all throughout my body. She's going to redo the EMG on July 16th to see if there has been any progression. I started Ceftriaxone again the other night, but I still maybe having reactions to it. I'm just getting worse, breathing worse, and no answers. This process is too slow, and it's so easy to just give up.
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Old 07-26-2007, 09:41 PM #9 (permalink)
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Hi kman. Don't give up. It can be a long process to find the cause of a muscular disease. There are hundreds here that have taken from a few months to a few years to get some real answers. These diseases are hard to pin down. Don't despair. When you see the doc on the 16th be sure to mention your breathing issues and ask to see a Respirologist.
AL.
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Old 07-27-2007, 09:57 AM #10 (permalink)
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Hi Kman-Al is right. You need fortitude for the long period of waiting and testing. I've been at it a year now and have just about decided that unless something new crops up I am just going to live with my health as it is. If that's what you meant by giving up I see your point. Just make sure you've been tested for anything that might be treatable first.

Regards, Cindy
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Old 07-27-2007, 10:11 AM #11 (permalink)
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Default dizzyness

kman543210

Why are you being tested for lyme. Doesn't a blood test do it? I am dizzy all the time and I cannot get a doctor to address it. The onl;y thing I do know is my mri is clean.

Carolcora
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