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Got my Igenex results.....

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Lyme Disease
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Posted 1/13/2014 9:25 PM (GMT 0)
After almost two years of symptoms, I finally think I've gotten to the bottom of my issues. I just received my results from Igenex and my IgM was negative(only 2 positive bands), and my IgG came back positive with bands 39 and 41 positive. I called my fibromyalgia doctor, who has been treating me for two years, and he dismissed the results saying they are inconclusive. He recommended I see an infectious disease doctor if I had further questions. So I have an appoinment scheduled but thought I shouls also see a LLMD. I found one locally, there is a 3 month wait to get in and of course it is not covered by insurance. Here are my questions for you experienced Lymer's out there...

1. Are my test results significant enought to see an LLMD and under treatment? I have heard band 41 is pretty generic, but that 39 is more specific to Lyme.

2. What kind of treatment is appropriate? My fibromylagia doctor suggested 3 weeks of 100 mg of doxycycline, but I hear that's not sufficient.

3. What is chronic Lymne? and has anyone experience using IV antibiotics for chronic Lyme?

4. Do most of you seeing a LLMD pay out of pocket expenses? The LLMD I have an appoinmtn for has a 550$ office visit and 80$ for 15 minutes! How can afford that!

5. Have any of you tried herbal remedies for your symptoms? Any suggestions there?

6. Has anyone experienced going out on disability for Lyme? What was your experience with that?

Any other suggeestions or advice for this newbie? I am super excited to possibly get some answers. I have been feeling so poor and I have 2 teenagers and I teach! Every day is a struggle. Thank everyone! :-)

Posted 1/13/2014 9:50 PM (GMT 0)
sinsquared, I would jump on the 3 weeks of Doxy to get started. It is not enough but at least it will get the ball rolling and you will begin to feel better. Be prepared for the Infectious Disease ( ID ) doctor to not want to treat you. This happens very often with ID docs unless they are familiar with Lyme.

I would make the appointment with the LLMD and hopefully by then you are on your way with the Doxy and he/she can continue to treat you. You can also tell your doc how great you feel with the Doxy and maybe they can continue to prescribe it :-)

I too paid $450 for my LLMD's first hour and pay $150 each half hour visit. My insurance has denied paying for my LLMD so the money comes out of my pocket. I try to space the appointments for every two months or 6 weeks minimum. I cannot afford to see him every month. The antibiotics that I have been on have not made much difference in a month so waiting two months has given me more to discuss with my LLMD.

Just like you, I visited a Neurologist, and ID doctor and no one would prescribe antibiotics because my results were "inconclusive" (sound familiar?). It wasn't until I saw the LLMD that I finally got treatment. Good luck with your appointments and lets hope that your doctors are more sympathetic than mine.
Posted 1/14/2014 12:14 AM (GMT 0)
Thank you so much guys for taking the time to answer my questions! This is very helpful! I think the hardest part for me is feeling like I'm crazy and that I can't get my muscles to stop twitching. I really do appreciate the feedback!
Posted 1/14/2014 4:28 PM (GMT 0)
Welcome to our community, Sinsquared! I'm glad you found us!!

You'll notice that you will get a variety of answers here!! There are a few of us that use abx only, many that use abx and herbals/naturals and then there are some of us that are using herbal/natural treatments only!!

Even with a negative test result, if you have the symptoms, you should definitely pursue treatment!! The blood tests for these infections leave a lot to be desired, starting with only 4 or 5 strains of the Lyme bacteria are tested for, even though there are over 100 different strains here in the US alone. One study found 8 different strains of the Lyme bacteria in one bird!

The Lyme bacteria - especially when combined with a Bartonella infection - will inhibit the immune system and the blood tests rely on the immune response to be there.

If you haven't yet, I would highly encourage you to read through our
"New to Lyme? Start here!" thread as it's packed full of a lot of important and helpful information.

Are you detoxing? Eating as healthy as you can afford to? Are you taking any supplements? Magnesium will likely help slow down those muscle twitches, and detox baths might help as well.

As has already been said - don't expect an ID doc to help. There is the occasional unusual ID doc, but they are going against the rest of their group if they choose to follow the protocols that will heal these infections. They don't believe chronic Lyme exists and that a 3 week course of abx is plenty to heal these very complex infections. Any remaining symptoms are things that patients are just supposed to live with - good thing all infections aren't treated this way!!
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