About 1 month ago, I went to the hospital with stomach pains, and very sore throat. DX with early diverticulitis and viral pharyngitis. IV antibiotics for Diverticulitus while in ER, then sent home. 2 days later, started with tingling numbness up and down legs, trunk and hands. Went back to ER, where they thought it might be Guillain-Barre. Did MRI and CT scans. MRI shows 4 brain lesions, and 2 in cervical spine. Lesions are nothing like typical MS lesions. 4 pea sized, mostly round lesions none of them in the center, where most MS lesions present. They did so many blood tests, and all they found was HSV-1 virus. They put me on a 10-day course of Valtrex for the herpes, and 7 days on Levaquin. Dr.'s (Neuro, Neuro-surgeon, Iinfectious Disease) all puzzled. After 2 weeks in the hospital, they finally did a Lumbar Puncture to run an MS panel. CSF fluid showed elevated lymphocyte counts and HSV-1. Neuro still thinks MS.
After thinking back, I began to recall several years of off and on headaches, dizziness, bad allergies, and what I thought couild be Carpal tunnel in both hands. Now, as I wait for the results of MS panel, I feel like it could be lyme.
I live in Florida now, but lived in Northeast PA untill 8 yrs, ago.
Could it still be lyme?
Valtrex didnt help, but after a week on Levaquin, symptoms seemed to go away. After 3 days off meds, started to experience something called Lhermitte's Sign (electric-like sensations from back of neck, down spine into legs when flexing the neck.) Was the Levaquin helping the Lyme....?
Can herpes activate Lyme or the other way around?
Lyme disease is in every state, including Florida. Some people who have Lyme have brain lesions but I do not know about the spine. Levaquin is sometimes prescribed for Lyme. What is also interesting is that two days after getting the IV antibiotics you had a surge of symptoms.
I don't know if a herx could cause a heart attack. Lyme and co-infections can cause heart symptoms. When Lyme is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and undertreat. Ticks can also transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is important to be tested by a Lyme reputable lab such as Igenex in Palo Alto, CA.
I had read Lyme can cause brain lesions because it is the spirochete's egg sacs. Though I asked my LLMD and he said my brain lesions were likely caused by repeated migraines. When I had my MRI done the radiologist said it was possibly MS, but when I went to the neurologist he told me MS does not leave lesions. He told me MS would look like a discoloration or shadow completely around the outer edges of brain when viewed on a MRI. He drew me a picture and that is the best way I can describe it.
My LLMD asked if I had ever been diagnosed with MS because over half of his Lyme patients had been told they had it. So if one has any reason to suspect Lyme I would be cautious of totally accepting a MS diagnosis and treatment without getting multiple opinions. Some MS drugs can make your Lyme flare.
Your post makes me even madder at my neuro and the MS specialist. They first saw a shadowy looking mark on my C6 and nothing on the brain MRI. Three months later they did another and the mark that had been about the size of a dime was pencil point size and barely discernible. They kept going back to find a lesion on my brain with no "luck". I tried to tell them I had been hit on the back of the neck with a branch falling from a tree at about the C6 but they just ignored that. When I had what I felt was a reaction to Valtrex (after 2 pills) they said my vision problem was from MS not the meds.
I have since found an article that valtrex can cause vision problems on rare occasions, I guess I'm a rare occasion. Another brain and optic nerve MRI and nothing. Still the specialist insisted MS although the neuro wasn't quite sure now and sent me back to the specialist and would follow his lead. Of course now after my 5th & 6th MRIs we know it isn't MS but I can't even bring myself to discuss this with either doctor until I'm well. Thank God I followed my gut. I hope I'm right on the lyme thing and can work towards a better life after treatment.
Betterdays- Interesting you mentioned the head injury you sustained. I had a head injury as an infant, then in my 20's got two head injuries in less than a years time. So maybe the brain lesions are from that or the migraines like the dr said. I think I have read before about the migraines causing it.
I have a friend that has been on MS medications for years now. As far as I know she doesn't have any MS symptoms, but she takes a lot of pricey meds including something that has to be injected daily. She went to Mayo Clinic and was told no she didn't have MS, then same dr told her she did, then didn't, then did, etc. I haven't talked to her in a while, but I feel inclined to call and mention Lyme to her. The two of us do share in common the migraines and brainfog. I hate to butt in to other people's business, but I just feel I should be telling people about Lyme that might have it. We can all be darn sure the average doctor would never pick up on it!