My neighbor has 3 distinct brain lesions (as seen on an MRI). He began having difficulty about two weeks ago. All other scans have been clean and cancer and stroke have been ruled out. He is having difficulty finding his words and he is having balance problems. His neurologist is still in the process of ruling out things. Does anyone have any knowledge of others presenting with brain lesions who have also been diagnosed with Lyme Disease? I would appreciate your input. Thanking you all in advance.
johnnyb
Frequent Contributor (1K+ posts)
Member # 7645
posted
Yes, I also have about 3 lesions and I have lyme. Lyme can cause lesions, but so can migraines and many other things.
Neuro thought that 2-3 months of abx would make lesions go away if they were from lyme, but they didn't. I don't know if he is accurate on the duration of therapy, though. I have doubts.
But certainly consider lyme if you are in an area that has ticks, and if symptoms came on in an previously symptom-free healthy person.
- JB
Posts: 1197 | From New Jersey | Registered: Jul 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Petesmom.
You must be a very good neighbor and friend to have!
Brain lesions can come from a variety of causes. Lyme is just one of them. Migraine headaches can actually cause brain lesions. (Though I reckon your neighbor would know if he suffered from migraines!) So can MS. Also vasculitis. And of course, so can lyme disease.
While some neurologists are open to the possibility of lyme, many are very closed-minded. They will tell you they have "ruled out" lyme by administering an ELISA test -- the preliminary screening test which is by some accounts only about 50% accurate. Don't let your neighbor rely on that to rule out lyme. Many of us on here have a negative ELISA but a highly positive Western blot (me and others).
Your friend could wind up with an MS or ALS label without having truly been given a thorough workup for lyme. That is why it is really important for him to see a lyme-literate doctor, or what we call an LLMD.
If that is not humanly possible at the moment, at least persuade him to order a western blot from IGeneX (see website by the same name). Ask for tests 188 & 189, the lyme IgG and IgM. His doctor will need to initial the authorization and his local lab can draw the blood and ship it off in the prepaid FedEx kit they'll send you. It's an absolute must.
In the meantime, remember that a lyme doctor would go by symptoms since lyme is clinical diagnosis, meaning that sometimes the sickest people can test seronegative - a fact that lyme doctors are aware of but one that mainstream doctors aren't.
So let your friend test away with the neuro but don't let him begin any treatments - especially anything involving steroids -- until he has seen a lyme specialist.
Many of us on here have brain lesions and similar symptoms, but have improved enormously with long term antibiotics and are (more or less!) speaking English again. There is hope! Tell your friend not to despair or give up hope.
Post or Private message me any questions -- I've got lots of references and good articles on brain lesions & lyme!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I have a couple of "tiny" lesions that are probably from Lyme.
Difficulty finding words is really classic Lyme. Anytime somebody presents with that symptom, Lyme should at least be considered. Many doctors told me I don't have Lyme because I don't have that symptom.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
Welcome & I agree; FANTASTIC NEIGHBOR you are!
Michelle did an outstanding job instructing you what to do.
IGENEX, Calif. testing -- make sure the MD has a DIAGNOSTIC CODE on IGENEX' SPECIAL REQUEST FORM you can download from the internet, www.igenex.com OR it will come with the IGX kit for the western blot testing.
IGX requires PREPAYMENT of $190 is current price for the western blot tests 189 & 188 unless person tested has medicare; FREE for them.
Write on the IGX request form to FAX results to MD and mail paper copy too! Mine were lost for 4.5 weeks.
I'll send you by PM, private message, a list of NEWBIE SITES to visit including TREEPATROL'S NEWBIE EXTENSIVE LIST, and at the end of mine, a full list of 125 - 150 lyme "symptoms".
Also when you see TREEPATROL'S LINK, please click on there and read down thru it. He has info galore on MRIS/CAT SCANS/PET SCANS, etc.
Look for one that tells about HARVARD'S MRI EXAMPLES of lesions of MS, lyme, ALS, Alzheimer's. I'd make sure when your neighbor goes to the neurologist that he takes a printed copy of what he/you see on the LYME/MS lesion EXAMPLES for the RADIOLOGIST.
Best wishes, and have his western blot done soon; Mon. - Wed. NOON....no later so it doesn't sit in post office changing the results! Look for a private message from me ok!
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I found I had lyme after i started having problems right after my youngest daughter was born,heart palps,numb arms and legs,blacks outs,etc..They kept trying to tell me it was all anxiety related.The doctor who did the test for lyme never even told me he was testing for it....i found out 3 months later.Meanwhile still having all these symptoms going on and numerous trips to the Er they discover a tumor on my brain, meningioma.I always wonder if one caused the other being i found out about both at pretty much the same time.
-------------------- AND NOW THESE THREE REMAIN: FAITH,HOPE,AND LOVE. BUT THE GREATEST OF THESE IS LOVE. Posts: 35 | From Springfield, Mo. | Registered: Feb 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
The neurologist that performed an MRI on my son wrote in his report that the lesions were caused by lyme. He feels lyme lesions are distinct.
After 8 months of treatment my son had another MRI and the lesions were still there. He had an MRI at the end of treatment [12 months] and they were gone. Can take a while to clear up.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Thanks to you all for your very timely replies. I am passing your advice on to my neighbor who has another appointment with the neurologist tomorrow. Will keep all of you posted and I wish you all the best of health.
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