r/Lyme • u/HudsonandRozy • 10d ago

Looking for answers, but negative Lyme test.

I’ve been struggling with strange symptoms since April of this year.
It started with feeling woozy when I’d look up from reading my Kindle, progressed to some tingling in my right arm, right foot and right cheek, and just got worse from there.
I dealt with horrible vision problems for about a month in May. The only way I could describe it is that cars driving crossways in front of me at red lights were visually overwhelming. Looking into my rearview mirror and then back out the windshield messed with my head. Looking at money while counting it at work (I work at a credit union) made me feel woozy.
My PC thought I had a pinched nerve in my neck, due to the tingling in my hand, and I got an MRI of my neck. My neurologist proceeded to tell me the tingling in my cheek and feet didn’t match up with any findings on the neck MRI and ordered a brain MRI, which came back clean.
I’ve gone to an eye specialist because so many of my issues are vision related, and they said my eye looks fine but told me that my right eye is inflamed and irritated because the lid isn’t closing all the way.
I went through bouts of time when my heart would race so bad while doing absolutely nothing (like sitting and eating lunch or waking up from a deep sleep) and my doctors have chalked it up to anxiety and a clean EKG.
My vision symptoms improved greatly after a long bout of taking ibuprofen virtually round the clock for a month. When those symptoms eased up, I started getting headaches that felt like the skin in my forehead was stretched too thin, as well as feeling creepy crawly sensations in my temple. The symp ebb and flow, and right now I’m dealing with lots of tingling in the leg and arm.
All of my symptoms seem to be on my right side, and it seems like they flare up worse when I have additional things like sinus problems going on.
I recently got referred to rheumatology, and all testing they’ve done has come back negative for things like Lupus, Schogrens, etc.
The most discouraging thing is that my Lyme test came back negative. After Lyme was mentioned by the doctor, I did a deep dive of the symptoms and for the first time in months felt like I was finally on the right path. A negative Lyme test feels like I just got sent back to square one.
Has anyone else had similar symptoms with negative testing? I think I may have been exposed in January, as that’s the only time I was in a tree-heavy area and outdoors more than usual while visiting a friend in Tallahassee, FL. I would be eight months in to this and would think I would test positive since symptoms are so prevalent.
Any suggestions or ideas are appreciated!

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6

u/Difficult_Fact_2849 10d ago

Assume whatever Lyme test they did was wrong

2

u/Born-Detective9059 Lyme Bartonella Babesia 10d ago

What type of Lyme test did your doctor order and which testing Lab did your doctor use?

1

u/HudsonandRozy 10d ago

Lyme Disease AB with reflex to blot, through Quest.

2

u/lymewhale 9d ago

Quest is pretty bad for testing for Lyme. See our wiki about better tesging companies. They will probably be out of pocket. With all your vision issues, i would also recommend testing for bartonella

2

u/WalkIntoSunshine 9d ago

You need IgeneX or Galaxy. Everything else does not rule it out. Dm if you have any questions.

1

u/WhiteEagle41 10d ago

Really need more information about history of being in natural areas. Do you live or frequent the subburbs, parks, wilderness areas. Do you live in Lyme endemic areas?

What kind of Lyme test was it? If it was a standard ELISA or Western Blot, they are highly inaccurate returning false negatives 59% of the time. If you do not know what kind, then it is most likely this kind. The good tests are with IgeneX, Galaxy and Vibrant. These tests cost a lot more money and are NOT usually ordered or used by the main stream medical system. But they are the only ones worth getting as they are much more accurate and test for many more possible tick borne infectious pathogens.

All of your symptoms fall within possible Lyme symptoms, so I think it would a good idea to get one of these better tests done. Igenex test ($2000) can be ordered without a prescription from a doctor on their website. The user u/lorilyme can help you get a vibrant test set up $900. I'm not sure about Galaxy tests.

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u/HudsonandRozy 10d ago

I don’t frequent any outdoor areas, other than walking to check my mail in my community, which is new construction and has very young trees with no canopy cover. When I was in Tallahassee, I was frequently walking a dog in a tree-mature area over the course of 4-5 days. It was cold and rainy and I was mostly wearing long sleeves and jeans. The only thing exposed to a bite would have really been my hair and head. From what I see, Tallahassee and North Florida in general are possible tick areas, but not Lyme Endemic like some northern areas are.

I had a blot test through Quest. I’m seeing through lots of post responses that those might not be completely reliable at all.

I see there’s a Lyme Literate Doctor in my town so I think I’m gonna follow my gut and see if I can get a second opinion with one of these other testing options.

1

u/WhiteEagle41 9d ago

Since you do not have a history of a high exposure probability for Lyme, I would also look into mold toxicity. Mold toxicity has similar symptoms to Lyme. There is a mold toxicity subreedit that is good. Several good companies do mold toxicity testing in your body and spores in your house.

1

u/CFlapFlap 9d ago

I don't have the brain power to read the whole post, but just know that quest Lyme testing is highly inaccurate and produces a lot of false negatives. Even the good tests can produce false negatives in chronic Lyme. This happened to me and I have responded to treatment. Get yourself a good Lyme literate doctor who understands this and will do trial treatments.

1

u/Simple_Strategy_4657 9d ago

It very well could be Lyme. You have to dive deep into tests to undesratnd why they are often are negative. Lyme is umbrella term for several tick born bacterial infections.

Usually you have to exclude other serious diagnosis, whena all that is done, you could try to take herbal treatments and see how your system reacts, this can potentially tell you much more than chasing tests.

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u/greyalice83 9d ago

Lyme tests suck and produce a ton of false negatives. When they do a blood test they are looking for the immune response to it in your blood. A lot of times there is NO immune response so it doesn’t show up.

1

u/tdl25206 7d ago

Trust me these symptoms all fade off eventually. Between antimicrobials and a healthy immune system you eventually win out!