Equivocal Lyme IgG/IgM Abs

A little background - I have been sick for about 2 years. It started with extreme fatigue and vertigo after I returned from a cruise. It progressed to nubmness and tingling in my feet and hands that eventually went up to my elbows and thighs. This progressed into shooting pains. At the same time I developed migrating joint paint, eye twitches, and headaches (mirgraine & tension). My PCP referred me to a Rheumatologist and did a bunch of tests - all were normal. Rheumatologist said that based on my labs nothing was wrong with me and offered me an antidepressant. My symptoms continued intermittently and 4 months later I started having spots in my peripheral vision. Opthalmologist looked at me and said he didn't see any signs of retinal issues - PCP said it must be related to migraines. At this point I asked my PCP to do a Lyme test and she agreed. Office called and results were "normal". At this point I started having a lot of trouble with mental fogginess and trouble completing sentences. I also developed a terrible intolerance to cold. My fingers would turn purple and stay that way for hours. I started getting spots on my body that felt like a was dunked in ice water, facial numbness, mouth sores, and random muscle twitching.

Spring came and my symptoms improved a bit. I had a few episodes of vertigo and the joint paint continued but generally I felt better. Fall of that year my joints were feeling much worse, especially hip. My doctor referred me to Orthopedist. He said the joint seemed inflamed but couldnt find a cause - referred me to rheumatologist #2. He said my issues seem to be autoimmune even though test results were all still normal. Prescribe plaquenil. After about 3 months minor improvement. I started a gluten free/dairy free diet that was recommended for auotimmune. Saw major improvements over the next few months.

One morning I woke up and was getting ready and I suddenly couldn't turn right when I was walking. Didnt have any other symptoms but PCP sent me to get a CT scan to be sure - it was normal. She said it was an episode of ataxia. Headaches came back with a vengeance after this. Had many episodes where I had imbalance/trouble walking and blurring of my vision. Dr decided it might be plaquenil so they took me off it - symptoms continued. They put me on Sulfasalazine which caused my WBC to drop and during this time I had an episode of illness that put me in the ER - severe headache, weakness, confusion, chills, low fever, terrible joint pain, spine burning, muscle twitching, etc. ER said it was a migraine. The headache continued for 2 weeks until I decided to stop taking the sulfasalazine. At this point I'm still having most of the symptoms intermittently. My PCP and Rheumatologist both think that I have "some form of autoimmune disease and a separate neurological issue that is of the demylinating type (MS or something like it).

Lyme had completely gone off my radar until I heard a bit on NPR about Lyme and the lady's story sounded a lot like mine. My doctor had recently computerized so I logged on to check my Lyme test and it showed "Equivocal". I read that this means there should be a follow up test so I requested it. She ordered it but she said she doesn't believe it could by Lyme. In my life I have had a number of tick bites - before I got sick I did a lot of backpacking, hiking, camping, and kayaking. Probably at least 3 ticks I had removed in the 5 years prior to getting ill.

So my question(s):
Does this sound like Lyme?
Where do I find a doctor that will take this serious? (I'm in WV)
Since it has been over 2 years am I stuck with these symptoms or can they treat it?

Hi intothewoods! Welcome to our community!!

Janet has given you a lot of good information.

To answer your questions:

Does it sound like Lyme? yes, it does. You had tick bites, plus symptoms consistent with lyme disease symptoms, along with an equivocal test.

As Janet said, to find a Dr. who will take you serious, you can contact ILADS Physician referral or start a new thread with the title: "Looking for LLMD in West Virginia".
A LLMD is the only Dr. you should be seeing - they are the experts in Lyme Disease - diagnosing and treating.

No, you are not stuck with those symptoms. It can be treated.

I hope you keep coming back here to read, post, ask any questions you have - we will do our best to answer them. There's a lot of knowledge and support here on this forum.