Positive Igenex Severe Symptoms, Unsure if it is Lyme Disease
I have a wide range of symptoms, and my condition has become overwhelming.
My most concerning symptom is severe short-term memory impairment. I struggle to recall recent information, even things I did the day before. The information feels like it is there, but I cannot retrieve it easily. At one point, I was afraid I had early dementia. I have seen seven neurologists, and they all say that overall things look okay. One of them mentioned that my brain appears slightly smaller than expected, but I have had three neurofilament light chain tests, and all of them came back normal. He also evaluated me for early Alzheimer’s disease, even though I am only 39 years old, and considered frontotemporal dementia (FTD), but said the normal neurofilament levels argue against both FTD and MSA.
I also had an FDG-PET scan, which showed hypometabolism in my temporal lobes. In addition, I completed two volumetric MRI studies over a 7-year period, and they suggest there may be some global brain atrophy, slightly more than expected, but not in a pattern that matches a clear neurodegenerative disease. A neurologist at Houston Methodist told me that he does not see a pattern consistent with Alzheimer’s disease, FTD, or another typical neurodegenerative disorder. He also ordered a Mayo Clinic limbic autoimmune panel, which came back negative except for low levels of anti-GAD65 antibodies. On neuropsychological testing, I did show short-term memory problems.
In addition to the cognitive issues, I have burning sensations on the surface of my skin, along with stabbing and painful sensations in my nerves, bones, and joints. The pain is intermittent and migratory. I do not feel obvious inflammation, and the pain is not constantly in the same place. It moves from one area to another, although the pain in my back and neck is more persistent. I have seen a rheumatologist and many other specialists, and they all say that everything looks normal. I have had extensive bloodwork, and the only abnormality has been very high vitamin B12 levels—over 1800, despite the fact that I do not take supplements.
The stiffness in my back is unbearable. I wake up during the night with my joints and muscles hurting, and my back is so stiff that I can barely move. I had a spine MRI without contrast, which was reported as normal aside from three bulging discs. These symptoms make it difficult for me to walk, because my back remains extremely stiff throughout the day. I also have a feeling of extreme heaviness in both legs, though not true weakness. On top of that, I often feel uncoordinated when I walk, almost like I have ataxia.
I have also developed urinary urgency and wake up multiple times during the night to use the restroom.
I have worked my entire life and was also in the process of completing my PhD, but I had to stop because all of these symptoms began last March and have progressively worsened since then.
I was tested for Lyme, Bartonella, and Babesia, and all three came back positive. I do not know whether these infections are truly causing my symptoms, especially because for Lyme I only had two bands, and I have read that there can be cross-reactivity. My symptoms are so unusual and severe that I do not know what to believe.
I have also developed complete apathy. I do not feel emotions the way I used to, and I want to sleep 11–12 hours a day. I also have visual snow, and my eyesight has been getting worse. I have crepitus—popping, cracking, and stretching sounds all over my body, especially in my neck. It is most noticeable on both sides of my neck and at the base of my skull. On top of that, I have a terrible sensation that I cannot swallow properly, or that I am being choked underneath my Adam’s apple. I hear crackling or crepitus-like sounds every time I swallow. I have gone to the ER twice because of this, and they said there was nothing they could do. The swallowing issue began in December, has progressively worsened, and becomes especially severe at night. At times, I truly feel like I am being choked.
I do not know whether Lyme is really causing all of this, or whether the Lyme result is even a true positive since only some bands showed up. I was told I had Lyme back in 2011 and was treated for it, although I do not remember a tick bite. At that time, I had only a few symptoms—some twitching, pins and needles here and there, and some memory problems—but over the past year everything has become dramatically worse.
At this point, I feel like I am dying. I do not know if this could all be Lyme, or if I have some kind of neurodegenerative disease that is being missed. I will attach pictures so you can see the test results. I would also like to understand how much diagnostic weight Bands 23 and 31 carry on the IGeneX ImmunoBlot, and whether that pattern is strong evidence of true Lyme exposure or whether it could still reasonably be explained by cross-reactivity.
I kinda put everything off these past years since I did not feel that sick, but this past year, the symptoms progressed like crazy, I feel like I am dying, I can’t even work. Thoughts? Do I have a neurodgenerative disease or can Lyme be causing all this? And how strong are my results?
Or do I have too many symptoms?