Lyme Disease Community
An update from my previous post
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An update from my previous post

I recently posted wondering if it would be worth it to get tested for Lyme's because i was having a really intense bout of anxiety, like never before basically.
I went to a PCP who was very thorough and ran the test which included Western Blot.  he stated if I felt more comfortable goign to a Lymes' doc he would be more than happy to refer me.  I told him I'd wait to hear what the test said.  It came back negative.  He explained he would put me on a two week trial of Doxy and if I was seeing improvement he would continue me on another 4 weeks.  Or he said I could have an MRI done...
What would you guys do from here?  I read that an MRI would show Lyme's.  Do you think its worth it just to rule it out?
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Unless you are very recently bitten, I'd say 'thank you' and take the referral.  Did you get a copy of the test results?  If not, call the doc's office and ask them to mail the results to you for your files.  That test could be meaningful to a Lyme specialist, since they sometimes read tests differently from a nonLLMD.

Then check out online the doc you are being referred to.  There is no standard by which Lyme specialists are rated, and there are plenty of non-believing docs who treat Lyme, but they do so inadequately.  

If you can't find any information about the doc online, then you may just have to take the appointment and see how it goes.  Sorry it's so complicated!
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Jackie is right, take the referral and go to an LLMD. Lyme does not always show up in an MRI. I had Bartonella, a co-infection of Lyme and it showed up as lesions on my brain but many others that have Lyme have a clean MRI.

My Western Blot taken by a mainstream doctor was negative too. When I went to an LLMD they use IgeneX labs for a much more accurate test and I came back positive. Plus they can test you for co-infections which further complicate things..

A new law was just passed in VA  that says doctors have to tell you that a negative result doesn't mean you don't have Lyme. It would be great if that law was passed in other states too.
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A negative Western Blot doesn't mean you don't have it.  I was CDC negative on my WB. Of the bands they look at, I only had band 41, which almost everyone has thanks to dental spirochetes.  But I had two Lyme specific bands / antibodies that the CDC ignores.  I only saw those two bands because I got tested at IGeneX which shows relevant bands that other labs don't.  You might ask your doc for an IGeneX Western Blot to see if it shows anything.

Some people test negative multiple times even when they clearly have Lyme.  I encourage you to take the Doxy. That's a miracle that your doctor was willing to prescribe it. It can work against Bartonella, too, which as mojogal mentioned, also causes anxiety.  Two weeks won't cure either Lyme or Bart, but it will be interesting to see if you feel any kind of change.  Sometimes people test positive after taking some antibiotics, as it starts killing bugs and perks up the antibody production process.

I had Bartonella and anxiety, too. My anxiety's gone since I was treated for it (5-6 months).  You should consider asking your doctor about Bartonella testing, too.  I tested "not negative" for Bart at IGeneX, but I think I was still too low for the "positive" cut off at most labs.  Since false negatives are a problem, a national Bartonella expert at NC State helped develop a culture test that came out recently. It's a better test.

If you'd like to know more (especially if your doc, like most, knows nothing about Bartonella), just google "Bartonella neuropsychiatric symptoms".  There are a bunch of articles out there.

I, too, have brain lesions.  It's not known if Lyme alone causes them, Bartonella alone, or a combination of both.  Some say it could be the HHV-6 virus that causes them, perhaps after Lyme suppresses the immune system. Since I had unexplained neuro symptoms, my neurologist ordered the MRI. I'm glad I did it as it showed that I did indeed have something going on. Without those lesions, I couldn't "prove" anything was wrong with me as all my other tests were normal or near-normal.

If you're up the for the MRI and you have insurance, I personally would go for it. As long as your kidneys are okay to handle the contrast (they do a blood test first to check), I don't see how it could hurt you.  I found I was exhausted after mine, which isn't the normal response of a healthy person. I had to lie down in the car for 1/2 hour before I could drive home. I think all the banging and whirring noises wore out my Lyme brain.  

Lots of people with Lyme show a completely normal MRI, so it's only helpful if it shows something that isn't right. You can't diagnose Lyme with an MRI, but it can help to get doctors to take you seriously. A SPECT scan is more useful with Lyme as it shows reduced and insufficient blood flow in the brain. Lyme patients with neuro symptoms usually have abnormal SPECT scans.

I hope you'll keep us posted. I know this can be a tedious process.  I hope you don't have Lyme, but you are welcome here.
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A recent article in Physician's Weekly.  This would be a good one to take in to one's doctor when asking for testing for Bartonella.

Note: It mentions that the count of Bartonella species that make humans sick is up to 12.  Labs only test for 2, b. henselae and b. quintana.  If those are negative, then the new culture test might find it.

http://www.physiciansweekly.com/bartonella-infection-diagnosis/
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Only a Lyme specialist (LLMD, for short) is likely to order a SPECT scan:  other docs place no value on them, since they aren't looking for Lyme.  And even if a nonLLMD orders a SPECT scan, s/he might not be able to read it properly.

It's like LLMDs see all the colors of the rainbow, but nonLLMDs are colorblind and only perceive some illnesses.  I would find an LLMD and go from there.

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