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Dr told me 4 bands tested pos but says I dont have Lymes, should get 2nd opnion?

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Posted 6/14/2012 2:14 AM (GMT 0)
I was put on antibiotics for 30 days about a year ago because I tested positive for Lymes. I think 5 bans tested positive on the western blot. I had another test done a few months ago and it showed 4 bands positive. My Dr says I should not be concerned and that I do not have Lymes anymore. I also have lupus so this complicates everything becuase I cant tell if I feel sick from the lupus or if t could be lymes. I asked for another blood test to see if I am still positive but he said there is no reason to do that. Should I be going for a second opinion? Should I demand another test?

A little background: In 2007 bands- 18, 28,39,41, and 58 all were reactive. My lyme screen was 2.40 which is high and the lyme titer was 4.85. I was put on antibiotics then for 1 week but then I was told to stop but I didnt really have lymes.

Any input would be appreciated. I have asked my Dr about seeing a Lymes Dr in the past but he scoffed at it and said they just over treat and take your money and even personally named the ones in the area. So I dont know what to think.

Post Edited (LAWCHICK) : 6/13/2012 8:20:41 PM (GMT-6)

Posted 6/14/2012 2:29 AM (GMT 0)
Well I'm sure you know that there is great controversy surrounding lyme and its diagnosis and treatment. Did you get a copy of your most recent test? Which bands are showing up and is it Igm or Igg? So in 2007 you tested for 5 bands and only given a week of antibiotics and then about a year ago you tested positive? Sounds like you may have had it for 5 years.

Are you having symptoms? Who diagnosed you with lupus?

I would immediately get to an LLMD. They are the only ones that are going to treat you properly. This disease is nothing to fool around with and the quicker you get proper treatment, the better off you will be.
Posted 6/14/2012 2:38 AM (GMT 0)
Hi,

I requested a copy of my blood work at the end of my office visit after my DR refused to re-test for Lymes. The bands were IGG that showed up positive on my 2007 test and I am pretty sure on my most recent test it was IGG too.

My Rheumy diagnosed me with Lupus because I had a positive ANA and a low c-4 serum which is an idicator of Lupus along with other lupus related symptoms.

I know of a Lymes dr in my area but he does not take insurance and charges 300 dollars for the first office visit. I will have to look around for a cheaper Dr but if I cant find one I will have to make an appointment with them. I am kind of freaking right now because my friend has lymes and has spent over 2,000 dollars on treatment to date and she is no where close to being done. I cant afford this. I just pray my primary takes it seriously if I do have it.

Also the plot thickens as Lupus can trigger false positives for Lymes.

Post Edited (LAWCHICK) : 6/13/2012 8:54:26 PM (GMT-6)

Posted 6/14/2012 10:46 AM (GMT 0)
Hi Lawchick,

I am sorry you are having so much trouble getting the treatment you need.

It is highly unlikely that you will get proper or adequate treatment from your primary care physician. Lyme is very difficult to treat and requires special training and experience.

When did your Lupus diagnosis come? Lyme has been seen to trigger auto-immune diseases such as MS and Lupus. It is complicated to separate out the different diseases.

I would encourage you, like the other posters before me, to see a Lyme Literate Doctor. They get a bad rap from mainstream doctors who don't understand that Lyme needs to be treated beyond where symptoms are resolved. Many of us have been helped by LLMD's and returned to good health.

If you would like personal recommendations on doctors, let us know the general region where you live. And then enable your email option on your profile members can contact you off the forum.

I know it seems like a lot of money to pay out of pocket. Some insurance companies will reimburse you for a portion of your out of network costs. Sometimes it's hard to see how much being ill is costing in reality -- the doctor's fees might not seem so bad when you look at it that way!
Posted 6/14/2012 9:38 PM (GMT 0)
Lyme can also cause an elevated ANA and low Complement levels. I really question the "false positive" Lyme test in conjunction with Lupus...

Furthermore, some research suggests Lyme may actually be one causative factor (or triggering factor) in autoimmune diseases such as Lupus. I too have Lupus and Lyme, and I know the Lyme came first in my case.

Check out roadback.org for additional information about antibiotic protocols for autoimmune connective tissue disorders.
Posted 6/14/2012 10:19 PM (GMT 0)
Hi. Razzle and forum co-moderator achievinggrace both are spot on with their ideas and advice.
My Rheumatologist thought I had Lupus or RA because of ANA titers and high sed rate. But I had Lyme, Babesiosis and God-knows-what-else so those can be misdiagnosis's.
I am a firm believer in the infectious theory of Arthritis. Lyme as an infection puts the immune system in high gear and that causes chronic imbalances...a cascade of inflammatory chemical reactions. You have to get a LLMD to help or a primary care doc that is willing to take direction from an LLMD. The sooner the better. I am 20 + years down the road from a misinformed physician saying I did not have Lyme even with positive Western Blot bands. It costs much more money to be long term sick. If I knew what I know now I might have begged my wealthy cousin for help early. Good luck...I hope I will see you report a success story here. :)
Posted 6/15/2012 2:40 AM (GMT 0)
Thank you for all for the replies.

Achiev: This all is just so fustrating and confusing. I have watched my friend be sick for over a year. She was practically laughed out of 10 differnt Dr offices until finding a Lymes doc who was willing to treat her. I just dont understand why Lymes is treated as some kind of mild cold or flu. I dont understand why Dr's refuse to acknowledge that it is a serious disease while so many people suffer from it.

With that said I didnt know positive ana and low C4 was a sign of lymes, I tried finding info on it but everything I find states lupus.

Lyme Lady and razzle: I have also heard that infections can trigger lupus. When I was young I had a severe strep infection in my blood, I nearly died. I originally thought that could have triggered lupus but it could be Lyme that triggered it if i did have it or do have it.
Posted 6/16/2012 4:49 AM (GMT 0)
I don't want to repeat all that's been said, but I do want to emphasize the fact that you're not getting adequate care from a doctor who isn't knowledgable when it comes to lyme disease. Just a few things to keep in mind when it comes to finding a lyme literate practitioner - most LLMDs don't take insurance, but insurance may cover a large portion of your visits through out of network benefits - mine is actually covered at 100% after my deductible is met. Alternative practitioners are also an option - naturopaths, herbalist, etc. It may take some research on your part, but this may turn out to be a more cost-effective alternative if you're stuck, and a lot of them are more knowledgable about lyme disease.

There is definitely a connection between lyme disease and autoimmune disorders - kind of a chicken and egg thing, but my (nonmedical) opinion is that if you have a positive lyme test, it's definitely worth exploring, as it's possible that if lyme disease is your underlying issue, treating it could help as far as your lupus symptoms go. There's a lot to learn - I'd definitely do all the research you can on your own, as even the most well-meaning doctors are guilty of assuming they know best when they know less. Best of luck! We're here to help however we can!
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