I've seen the term lesions used when discussing Lyme, but I (in my unscientific way) think it's not the best term -- it was borrowed from MS, but Lyme and MS have different effects on the brain.
Lyme causes brain swelling, not sores, and that's a whole different thing. I wouldn't go to the doc saying my ankle had a sore on it, if what it was was swollen.
LLMDs use SPECT scans rather than MRIs, because SPECT shows areas of swelling, while an MRI shows fuzzy areas of trouble. To my understanding, SPECT scans are more specific for Lyme.
NonLLMDs aren't likely to think of Lyme in the first place, so they use a tool (MRI) they are accustomed to, even if another tool (SPECT) would be more useful. It's part of that blind spot nonLLMDs have.
As to what areas of the brain are most affected, I haven't read that it is an issue. Swelling is swelling, I'd think.
Some Lyme patients show small fuzzy white spots on a brain MRI. They tend to be scattered through the white matter. Radiologists sometimes refer to them as "post-infectious" or "post-inflammatory" or as being consistent with a demyelinating condition.
Not all Lyme patients with neurological symptoms get these spots. No one knows why yet. One theory is that they occur when both Lyme and Bartonella are present. (I have both.) Another is that they occur when the virus HHV-6 flares up as Lyme suppresses the immune system. (HHV-6 is also known to cause these spots.)
Occasionally, a Lyme aware radiologist will mention Lyme Disease as a possible cause. Usually, these spots are not enhanced with contrast, so many docs confuse them for "old" MS lesions. An enhanced MS lesion is usually blamed for new and current symptoms. This can be confusing to a doc who is expecting to see an enhanced lesion in a particular area to explain the patients's latest symptoms.
One important difference is that MS lesions don't go away. But Lyme "lesions" can shrink or heal completely. Not always, but some do. Two of my 20 shrank a bit in my first five months of treatment. We shall see how many remain when I am done with treatment.
On the use of the word "lesion," my MS doc explained that Lyme Disease lesions are not the same as MS lesions. She said they use "lesion" generically for those fuzzy white spots,on the MRI.
You can find numerous references to LD lesions by googling Lyme lesions, or something similar.
no treatment as of yet ( for anything)! Supposed to have a LP done tomorrow cuz dr's are looking into MS. I guess I am just going to begin there, have no choice really. Will a LP give LD results of any kind??
Only about 10-30% of Lyme patients show positive for antibodies in their cerebral spinal fluid. I was negative. Unfortunately, doctors are told this is a highly accurate and definitive test, when in reality, it's only definitive if it's positive. Multiple doctors told me I didn't have Lyme Disease because of this test result.
But when I got a Western Blot at IGeneX, I tested positive. I also tested positive for Bartonella. When you have both, it seems to mimic MS.
Don't be surprised if you are completely disregarded again. Most doctors are ignorent or misinformed about Lyme Disease. Some of the "official" dogma on it is just wrong. This is what Lyme Advocacy groups are fighting to change. It is hard to get "the establishment" to change their opinion, though. Prestigious and powerful doctors and bureaucrats don't like to admit they are wrong.
You will probably need to see a LLMD, a Lyme Literate Medical Doctor.
I encourage you to proceed with the MS work up, though, and any other tests your doctors recommend. Lyme can mimic MS, and it can be tricky to get the diagnosis right. Just remember that if you have Lyme, steroids will ultimately make you sicker as they suppress the immune system, allowing a Lyme infection to grow and multiply.
I have over 20 lesions on my brain and that's not a typo! Mine are small and scattered throughout my brain. The first thing the neuro asked me was "have you had lyme disease"! They ran every test under the sun and everything including the LP came back normal (thank goodness I guess). Anyhow, it also did not show Lyme disease.
I was then tested at Igenex and came back positive for lyme and erlichosis. Although I tested negative for Bartonella, I do believe that I have that as well as I am taking a herbal thing by Byron White called ABart and had a major herx from it. Keep it mind that there are a number of strains of Bart (and other coinfections I think) that they do not even test for!
I have a lot of crazy neuro symptoms...I'm not sure what your symptoms are but if you want to read through my previous posts, you'll get an idea of what I've been going through.
I have my third follow-up MRI at UCSF on December 5th. Since the first one, they have been stable with no new lesions. I pray this next one is too.
Oh...that first neuro dismissed lyme after my LP came back negative, but I think it says something about lesions/lyme since he asked me about it...
Maybe this will make you feel a little better about the whole lyme thing.
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