Neurological Lyme Disease

[ljr815]

I began treatment for Lyme Disease in September after feeling terrible and having many of the symptoms and many bands on the western blot. I was  put on Augmentin 1500mgs a day. I had an MRI that showed a white matter lesion.A spect scan was done at Columbia hospital, I am confused by the results- Moderately severe, global,cortical hypoperfusion with heterogeneity. This perfusion is consistent with encephalitis or vasculitis, such as from infections eg. Lyme disease,autoimmune causes or secondary to some medications.   Imay add that I have Chronic EBV Fibromyalgia and Chronic fatigue syndrome. What does this mean? Iguess the antibiotic that I am still on is not helping. Please advise. Sincerely, Lori

[tory2457]

I agree with Julie....lymenet offers lots of people who can help with your questions.
I ca offer this:
is your doctor a member of ILADS? ilads.org
ILADS is a group of doctors who treat lyme disease and the co-infections that go along with this illness. This group DOES NOT follow the restrictive IDSA guidelines. Lyme Literate Doctors or LLMD's treat based on symptoms along with test results.

As for the other illnesses you have particularily Fibro, EBV, CFS, are illness many of us had as a label prior to being treated for LD. For instance for years I had a MS diagnosis....but found out that my "symptoms" are multiple scarring,,,the  cause of my MS is a Tick-Borne disease. I'm in lyme treatment for 15 months and I don't have any new lesions and some have already lightened..

Reading and understanding this disease will also help as you head down a road to wellness.

Best to you,
tory

[ljr815]

Thanks for your input. Still trying to figure it out. Doctors say I have a vasculitis type pattern seen in lyme, autoimmune etc.  everything is a wait and see. thanks, Lori

[ljr815]

Amazing A friend of mine has a diagnosis of MS. But All of us think it's lymes. She went to Mayo And got told fibromyalgia; which I also have. i can't get into my ---heart damage, brain lesion ,spect scan ,etc maybe another time but I'm fed up. Is it Fibro, is it CFS , OR lyme Help!    Lori

[patsy10]

It sounds like you might need IV antibiotic therapy to get to your central nervous system lyme.  I really don't think Augmentin will take care of it entirely.  I would also suggest you go to lymenet dot org and post this info there.  CFS/FMS are "syndromes", meaning that they are a group of symptoms with no known cause.  Well in your case the cause is known.  So what you have is lyme disease causing fibro and cfs.  The Epstein Barr virus is very common.  Most people have it in their bodies with no symptoms.  When the immune system is weak (from chronic lyme disease) the EBV becomes active.  This is very common in lyme patients.

[winfree]

Hi. I just responded to traclyn about neuro lyme, with my input. It might give you more food for thought.