posted
Hi just got back my MRI results which showed lesions on the white matter of my brain. I have had Lyme for 15 years and have treated it in a long time. My symptoms were not severe over some of the last 7, but recently I gout a violent stomach flu and then all hell of Lyme broke loose. I had constant dizziness and my muscle twitching is insane. Saw a doc before all this...Lyme doc who put me on Ketek , which I am now on, just called him about the MRI and haven't heard back yet. I am freaking out about MS ALS...any body with thoughts please help. Or does this sound like Lyme.
Posts: 298 | From los angeles | Registered: Mar 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Yes, white-matter lesions are consistent with Lyme disease in the brain. I hope that eases your mind somewhat. I am sure others will be on here that know more about this area of the illness than I do.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
It is Lyme. I want a MRI or SPECT--but can't get one from my doc. If I am going to try for SS disability I am going to ask for one...
God bless, please don't stress too much--be good to yourself.
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Thank you very much. the report says "foci of hyperintensity in the white matter of the brain" and goes on to say to check for demelinating disease, so I have been panicked for 24 hrs. Going to see a neurololigist tomorrow morning.does anyone know what the Lyme treatment is for this?
Posts: 298 | From los angeles | Registered: Mar 2006
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White lesions on my brain were one of the first things that my LLMD had to dx me with Lyme. It's consistent with Lyme. I've had 2 MRI's one year apart before and after starting treatment and both showed the same thing.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
Thanks Corgilla. What kind of Meds did the doc put you on for this? And what does it really mean?
Posts: 298 | From los angeles | Registered: Mar 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My teenage son had lesions in his white focal matter on his MRI. Common with lyme. He was treated for a year with abx and we then did a SPECT which was clear.
Many abx will work, the key is prolonged treatment in sufficient doses to cross the blood brain barrier. It takes time but certainly can be corrected.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Did your sons MRI come back saying"foci of hyperintensity in the white matter of the brain"? Thanks so much
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
My MRI showed a few lesions in the white matter too. My neurologist did a spinal tap to rule out active MS. They look for protein and oligbands. Mine was neg for those and spirochetes. I also was treated for lyme 13 years ago, and last 4 months my symptoms came back really bad. Mostly all neuro. lyme certainly can give you this MRI result.. I have been on doxy, now flagyl. Sometimes I wonder if MS would be easier to deal with
Posts: 41 | From new york | Registered: Mar 2006
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posted
At least your report did not say you were a neurodegenerate! Hubby asked new PCP for orders to repeat MRI since it had been about a year since last one. She didn't know much about Lyme.
Doc asked why he needed MRI -- we told her to see if there were any new lesions and so her orders used the diagnosis of "neurodegenerative disease". Now when hubby is feeling down or gets confused he says doc so and so says I am a neurodegenerate.
The report came back and just said several white matter lesions of increased hyperintensity. Hubby has gotten good at complaining -- he actually gets results usually. Made them rewrite the report and describe the location and size of each lesion.
There are 4 or 5 -- may actually be one less than seen on prior report. Size is 2mm - 4mm. He was less worried when he found out his kidney stone is larger than the brain lesions.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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quote:Originally posted by erpatti: My MRI showed a few lesions in the white matter too. My neurologist did a spinal tap to rule out active MS. They look for protein and oligbands. Mine was neg for those and spirochetes. [/QB]
lalyme...If your neuro is Lyme ILLiterate, he will want a spinal tap. I would NOT go there. If your test comes up negative for Lyme [and you only have a 20% chance it will show positive], then you will be labeled with MS and your insurance probably won't pay for your Lyme treatment.
Something to think about!!
I would not freak over this. MANY MANY MANY Lyme patients have the lesions on the brain.
You may WANT to have the spinal for peace of mind, but personally for ME, I wouldn't do it.
Why don't you repost this over in Medical? You'll get twice as many responses.
Hang in there!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
actually my spinal tap ruled out Ms. My Dr. said he didn't think with chronic lyme they would find spirochetes. I had been on doxy for awhile. I had a fine red rash with rocephin ? herx. I will be getting sjkin tested for allergy and if I can i will be getting rocephin again. My insurance paid with diagnosis lyme
Posts: 41 | From new york | Registered: Mar 2006
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Thanks again for all of your responses. Just came from first neuro...who looked at the MRI and said it was consistent with lyme or migraine or MS. Gonna get second opinion on stuff...but he said my symptoms are not consistent with with MS , but Jeez, he said "Well there is still controversy about the existence of chronic Lyme." I really wanted to scream. When will they get it and why don't they get it?
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
I had to respond that is exactly what my neuro said. And after the spinal tap was clear for ms and lyme she just stared at me . I kept asking her what she was writing as a diagnosis, she never said. Then she said it could be the quietest case of MS or the migraines. Thank goodness my rheumt. is treating me again for lyme . Just finished my first day of flagyl and feel really really bad. My hand feel like it wants to twitch every time I use the mouse. I already have tingling and headache and its worse. I don't know if it can be a herx this fast Posts: 41 | From new york | Registered: Mar 2006
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posted
IM DEBBIE NEW HERE, IVE BEEN SICK SINCE 2001 I GOT MARRIED TO A DEAR HUNTER IN 2000 WHO BROUGHT HOME DEAR TICKS. MY BRAIN MRI SHOWED WHITE MATTER AND I SAW 5 WHITE SMALL LESIONS . IM TIRED OF DOCTORS. IVE BEEN TOLD CHROINC FATIGUE, FIBRO,RULLED OUT MS BUT THE MRI STATED COULD BE MS,OR LYME OR ADEM I FIGURE ITS LYME CAUSE NOW I PULLLED HARD PIN HEAD LIKE OR BLACK HEAD LIKE THINGS OUT OF MY BODY AND I GET THE CREAPY CRAWLEIS. THIS MS,VRS LYME IS SO SIMILAR ITS DRIVING ME CRAZY THIS IS NOW 2006 AND FOR THE PAST YEAR IVE BEEN SEEING THESE THINGS IN MY BODY AND BOY DOES IT BURN WHEN I PULL THEM OUT WITH TWEEZERS AND THEY ARE SO COURSE TO PULL DOES THIS SOUND LIKE LYME TO YOU GUYS? PLS RESPOND IM OUT OF BOSTON MASS. YOUD THINK THEY FIGURE THIS OUT BUY NOW? THANK YOU DEBBIE
-------------------- deborah a harrington Posts: 3 | From revere ma, 02151 | Registered: Apr 2006
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Oh my gosh ...how could this NOT be Lyme.I am no doctor, but Deer Ticks are the Culprit. Please go get tested and not just once. Lyme may not show up all or sometimes. Check your symptoms against the symptoms list. Also get tested for co-infections. I just found out after 16 years that I have co-infections too. It could always be something else, but you sound like your lifestyle is the most vulnerable to Lyme I have ever heard. STAY AWAY FROM THOSE DEER.
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
lalyme i just sent you a private msg dont know how to do this if you send me private msg back lol and im so sorry about your dx with the co infections i do not understand what a co infection is but i will sit and wait for your response in priv email if you wish. hugs debbie
-------------------- deborah a harrington Posts: 3 | From revere ma, 02151 | Registered: Apr 2006
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Oh my gosh ...how could this NOT be Lyme.I am no doctor, but Deer Ticks are the Culprit. Please go get tested and not just once. Lyme may not show up all or sometimes. Check your symptoms against the symptoms list. Also get tested for co-infections. I just found out after 16 years that I have co-infections too. It could always be something else, but you sound like your lifestyle is the most vulnerable to Lyme I have ever heard. STAY AWAY FROM THOSE DEER.
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