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Avatar universal

Lyme Disease?

So, I've had various symptoms over the past few years.  These symptoms include things like balance issues, stiff and soar neck, tingling in hands and feet, fatigue, trouble concentrating, increased anxiety, trouble putting thoughts into words, general brain fog, increased floaters in eyes, and visual snow.  I remember having a vivid bullseye rash several years ago, but I've had three ELISA Lyme Disease tests, and they have all came back negative.  I have had multiple tests done throughout the years to rule out things like brain tumors, diabetes, thyroid problems, glucose intolerance, and autoimmune diseases, and they have all came back negative.  I'm 23 years old, and I should not be feeling "off" like this because I stay very active and eat well.  Does it seem possible that I could have Lyme Disease even though my tests have been negative?
4 Responses
Avatar universal
Just curious are you from Canada?  I am and my elisa came back negative that test really isnt accurate.  If you are from Canada i wouldnt waste any more time with our healthcare they dont have a clue about lyme or at least that was my experience(but it sounds like thats common everywhere not just here).  Find a naturopath that specializes in lyme preferably an ilads one.  There arent many i had to go 1300km to get to one.  They will most likely order an igenex western blot test and go from there.  

If your not from canada i would still try and find a lyme literate doc and get a igenex western blot done it seems to be the best option.
Avatar universal
(If this is a duplicate message from me, just ignore ... I thought I had responded.)

I'm not medically trained, but I had Lyme several years ago, and your symptoms are quite similar to what mine were ... but Lyme is tricky, so not everyone has the same list of indicators.  Some docs aren't aware that due to a patient's own body chemistry and immune system, and especially due to what other infections the 'Lyme' tick may have brought along, the symptom list for any one patient may well not look like anyone else's.  (I had Lyme along with babesiosis, so my symptoms very likely would not have looked like someone else's list if they had 'only' Lyme and not babesia in addition.)

You say, "I remember having a vivid bullseye rash several years ago, but I've had three ELISA Lyme Disease tests, and they have all came back negative."  The ELISA test is, so I recall, considered accurate if the test result is positive for Lyme, but if the test is *negative*, the test may well be wrong.  Lyme has the ability to suppress the immune system in your body, so that your system is not making antibodies to Lyme, and result of the test is negative ... but a *false* negative.  Meaning:  you can have Lyme but the tests may say that you do not.

There are other, newer, more accurate tests -- particularly one created by a company called IGeneX.  The IGeneX test doesn't rely on measuring your immune system (as the ELISA test does), so the IGeneX test is better at detecting a Lyme infection.

If your doc did not test you through IGeneX Labs, then it would indicate to me that the doc is not entire up to date on Lyme.  I would, in your situation, find an MD who will test you through IGeneX, and will also know how to treat the infection effectively.

You would need an MD's written order to IGeneX before IgeneX will test you, just like with any such testing.  I see the comment by the previous poster here suggesting a naturopath who understands Lyme, including testing through IgeneX labs.  My Lyme doc tested me through IGeneX, and then treated with antibiotics -- not through naturopathy.  Treatment was easy, taking several months to kill first my babesia infection and then turning to kill the Lyme infection.  That was about 9 years ago now, and I have had no symptoms or issues at all.  I think it's called 'cured'  ;)

      --- Bottom line:  Getting the IGeneX test as the poster above suggests is what I would do as well, but I would go to a medical doctor (MD) who is expert and experienced in Lyme disease, not to a naturopath.  In addition, given that you may have had Lyme for quite a while, I would also opt for the 'big guns' of antibiotics rather than naturopathy.  That's my personal view.

Best wishes to you -- let us know what you do, and how it goes, okay?
1 Comments
I suggested a lyme naturopath only because up here in canada they seem to be the only ones treating lyme as the md docs will only prescribe the 21-28 days of doxy.  At least in my case thats how its working.
Avatar universal
Thanks a lot for your concerns and thorough answers!  I'm actually from Virginia.  I also ordered the Igenex testing kit yesterday.  I've heard they are great with diagnosing Lyme Disease and tick borne illnesses.  I talked to my doctor and she said that they would be willing to send my blood to Igenex..  I'm hoping that this is going to be the answer for me.  I just feel like because I had the bullseye rash, I have to have Lyme Disease.  Especially because of all the symptoms I have been having no matter what the tests says.
Avatar universal
Good for you!  I would do the same.

IGeneX offers more than just the special test for Lyme, and your doc can choose among those as well, as the doc sees fit just to cover all the bases.

Keep us posted!  
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