Lyme Encephalopathy May Surface Despite Antibiotic Treatment

Although timely antibiotic therapy may prove effective in treating early local or disseminated Lyme disease, it may not eliminate the pathogen from the central nervous system (CNS) in some patients, according to Eric L. Logigian, MD, and colleagues, from Brigham and Women's Hospital in Boston, Mass. Patients who have been appropriately treated for Lyme disease and who report neuropsychiatric symptoms should undergo cerebrospinal fluid analysis, Dr. Logigian recommended.
Although early treatment may attenuate the antibody response to Borrelia burgdorferi in serum, Dr. Logigian explained, late neuroborreliosis may occur in some seronegative patients after a latent period of months to years. These were the conclusions drawn from a 3-year retrospective study of 22 patients who met the criteria for Lyme disease established by the Centers for Disease Control and Prevention, Atlanta, Ga, and who had symptoms typical of Lyme encephalopathy (memory loss in all patients; depression, somnolence, and irritability in 20% to 40%; and headache in approximately 20%). The patients were assessed with enzyme-linked immunosorbent assay (ELISA) and Western blot serum studies, spinal fluid analysis, neuropsychological testing, and brain imaging.

Cerebrospinal fluid analysis revealed CNS infection in 8 of the 22 patients (36%), and "showed significant differences between the patients with CNS infection and those without CNS infection. Only 1 of 8 (13%) of the patients with CNS infection was normal [seronegative], whereas 11 of 12 (79%) were normal in the patients without CNS infection," according to Dr. Logigian.

"Qualitatively, the patients with CNS infection had greater abnormalities: 63% had neuropsychiatric abnormalities, compared with only 36% in patients without CNS infection. Lesions visible on single photon emission computed tomography were much more prevalent in the patients with CNS infection," he reported.

Also, I don't think the visual test on chronicneurotoxins.com is quite that accurate for lyme and I've met others with the same opinion. I have about 18 different visual problems/symptoms from my lyme - grainy vision, strobing/flashing lights, eye pain, floaters, blurry vision - you name it. A retinal specialist told me recently that from an ERG (EEG of the retinas) the cones in my retinas were at sixty percent of normal.

I took the test on the chronicneurotoxins site and it told me I passed and don't have any toxins affecting my eyes... I would beg to differ...

One thing that I find rather odd about that website is that one has to pay up front with a credit card to take the test. I can understand it costs something to store the data for them, but I think if people could take the test without having to store the data - maybe if they paid should they want their data stored, it would come across better. Right now it gives the impression of "give us your money up front - then take the test - by the way you passed the test - bye and thanks for the money!"

I've met people who did well on Questran and I've also met people who got much worse on it. I've been wondering if I should try it, but I'm hesitant to and the $8.95 test that tells me I don't have neurotoxins in my eyes when my eyes are HEAVILY affected by lyme tends to push me towards not trying it. Maybe it could help me, but the lack of free public access to it makes some people wonder about it and I've heard others express that as well. I've found many an opthamologist's website where they have simple visual tests. I've never seen anyone charge for them because they're on there for the common good of patients everywhere.

Another point I'd like to see clarified on the chronicneurotoxins page is the claims of 90 percent success rates in patients with lyme. Myself along with others have wondered "Define success - as in people get better completely or they notice a slight difference?" Out of the 90 percent, how many have their symptoms go away completely? And out of those, how many have their symptoms stay away too? Maybe Questran helps people a lot, I don't know, but I think the presentation of the information, as in seeming too good to be true, and the monetary charges involved make people naturally more hesitant to believe in it. If, let's say, only 20 percent get to feeling pre-lyme, then good, let's see that info. That would still be something people would consider trying because it would sound more believable. If indeed 90 percent of people were cured, then we'd probably all hear a lot more about it - not to mention Dr. B and big LLMD's would be singing it's praises to high heaven.
Makes sense?

Another important point about it is if, let's say 20 percent get to a full cure, but it's touted that 90 percent are cured, this could be dangerous. Right now insurance companies will grab on to anyone who says that lyme is easily cured. They hold on to Steere's claim of three weeks of antibiotics only can cure lyme. If they think 90 percent of all lyme cases can be cured with Questran, then they might use this as another excuse to deny that chronic lyme infections exist (which they do of course), thereby giving them more fuel in attacking our LLMD's. If it is 20, or 30, or 40 percent, then I hope it could be presented as such before we give more fuel to the enemies of Dr. B and others.