Elisa positive, doctors still doubtful

Hi,

First some background information: I am based in Europe, male, 24 years old. My symptoms started about 4 months ago, after a period of severe anxiety/stress due to a noise induced worsening of my tinnitus. I believe my immune system might have been weakened during that period. I can not recall a tick bit or a rash. I have been in tick habitats over the last couple of years (mountains in Italy, private Island in Sweden,...)

My main symptoms are:
- Visual distortions (afterimages, double vision, visual snow, light sensitivity, inability to filter out all my eye floaters,...)
- Tingling feeling across my body
- Sometimes random pain in my knees or muscles that lasts for a minute or so
- Almost daily a sore throat
- Muscle twitches
- Frequent headaches (I had this before but they are more occurring more now)
- Seizure (when lying in bed, I sometimes get an uncontrolled movement in my arm or body)

Based on this I went to the GP for a blood test. She did an ELISA test and I was positive. I was then sent to the hospital where I saw someone more specialized in infectious diseases today. He now ordered a Western Blot test but he clearly thought that I was a false positive on Elisa because I couldn't recall a tick bit or a rash and I never really had flu-like symptoms. I told him about the visual distortions and he said it's unrelated to Lyme whereas if I do some basic search on google, they are very much a symptom for some people.

What do you think? Given my symptoms and positive test this is a pretty clear case for me. If the WB turns out to be negative I will go to a specialized clinic in Germany for better tests.

Many thanks!

RUN to Germany!!!!

First I want to say welcome! This is such an awesome community and you will find loads of support here. There are many others here much more capable of technically answering your question. But if you are positive on ELISA, you have Lyme. And need to find a new doctor. IMHO. According to ILADS: "Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete."

I am based in Europe too, and I dare not even mention Lyme. It's like I am mentioning I want to be tested for the Black Plague. I have an LLMD who was the first ever to diagnose me after decades, so there are some out there. (But I am not happy with my doc lately)

Not sure, but I think most of the mods are in the US/Canada so not awake yet. So for now, I will just say head to the top of the thread and there is a permanent post called "New to Lyme?". I would suggest to start to read through that. Especially about the testing. So glad you're here and hoping you get the help you need!

Welcome to this very compassionate and knowledgeable group ! We are so glad you are here!

Since you are new to the site, please visit the 'New to Lyme?' thread, it's the top thread on the forum.

If you are trying to locate an ILADS ​(International Lyme & Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, please be sure your email option is enabled.

​Also, if you are looking for a llmd in your area, you can also start a new thread 'Looking for LLMD in (fill in your city, state.) Someone will respond to your request asap.

Your testing story is EXACTLY like mine, I was actually told to start doxycycline, (in very inadequate dosages and strength,) then told to stop. I knew this wasn't right, so I sought out a llmd that retested me by Igenix.

You need to find a doctor who understands that Lyme is treated on symptoms and not necessarily on test results, as testing is so faulty.

Again, welcome! Ask all the questions you need!

Hi Warrant!
Welcome to our community! I'm so glad you found us.

I can see that our wonderful members have given you very good information!
What I can add is that it's very common for most doctors to be very uneducated about these infections, most have no idea how to read or interpret the tests. A positive ELISA is all that's needed, especially when combined with your symptoms.

So you need to find a doctor that will believe that the positive ELISA is enough, or treat yourself. We have quite a few members that are treating themselves, including myself. While not ideal, it's a lot better than trying to see how long you can live with an active infection going on in your body.

​If ​you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​​ ​​And, here's another good place to find helpful detoxing rout​ines:​​​http://www.tiredoflyme.com/detox-methods.html​​

​
You ​​can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your location and area that you would like to find a LLMD in and I will see how close I can get to your location.​

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You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & country)​​ area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

I often wonder what these doctors are thinking when they send people for a blood test, if they know that they'll just call it a false positive if it comes back positive. Like what's the point.
If it came back negative would they have called it a false negative? Doubtful.

They are so clueless.

Hi Warrant!

Sorry you're getting the run-around with the Dr.'s.

"He now ordered a Western Blot test but he clearly thought that I was a false positive on Elisa because I couldn't recall a tick bit or a rash and I never really had flu-like symptoms"


This is so stupid...(of the Dr.) - the tick can be tiny - like a poppy seed...and/or you could be bit in areas you don't see - like the back of your knee...back of your head/neck under your hair...AND the rash occurs in LESS than 50% of the people.
I never had a known tick bite...or a rash...or flu-like symptoms either.

I am super glad you found us here so you can take action now.

Sounds like you have a good handle on things at this point! Be sure to let us know as you have questions, and remember to start off on very low doses to avoid serious herxing!