Topic: DO ALL NEUROLYMIES HAVE WHITE MATTER LESIONS?
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Anyone know the answer?
If you've been treating for years, is there any reason to get an MRI? (because even if they find the white lesions what can you do about them???) Do they ever go away?
Thanks!
Posts: 1155 | From Southeast | Registered: Oct 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I've opted not to have a Spect Scan done.
I just don't want to know.
I know of others with Lyme that do not have any white matter lesions show.
That being said, those with the lesions often have
Seen a decrease in size and coverage on antibiotics.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
No, not everyone has them. The MRI and SPECT can be helpful for a few reasons:
1. To clarify that you do in fact need IV antibiotics
2. To get the insurance company to pay for it
3. To get disability
4. To measure treatment success; follow up MRIs can show the lesions have shrunk or gone.
It is scary, we are still reeling from the shock to find out our 13 year old has THREE white matter lesions in the frontal lobe. We didn't even know for sure if he had Lyme; we were just getting him checked because of all we'd heard about Congenital. He was CDC positive and in fact had it real bad.
So scary; we could have so easily missed this. Now he has a PICC line and is on IV antibiotics.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
losferwrds
Unregistered
posted
I have an appt for an MRI on thursday, not only to check for lesions but if ya got neuro problems why wouldn't ya wanna rule out anything else in your head as well.
IP: Logged |
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
This study which was just published and posted by Melanie Reber on this board is what prompted my question (as it discusses white matter lesions):
posted
I have white matter lesions, about 16 of them I think (the exact number is lost in a white hole!).
I was told 11 years ago that I have MS (which I do if you agree that MS means multiple lesions in the brain). That "diagnosis" does not address the cause, though. Unless you see a Dr. that knows about Lyme, if you have white matter lesions, they will tell you the same thing. But that's not a bad thing. Scary, but not bad. It can be useful information in helping your LLMD determine how to treat you.
In my opinion: Whatever you call it, I have deterioration of the myelin sheath going on in my brain. That's not acceptable. So I have chosen to start treating the "MS" again with Copaxone shots. The shots are statistically proven to slow the progression of the disease and to encourage healing of the myelin. I was on Avonex, an interferon, for 8 years and felt horrible the whole time. I had to pick which days to be sick each week. Copaxone hurts a lot for about 30 minutes once a day and it's done.
I am also being treated for Lyme. It is my hope that the combination will allow the Lyme treatment to work while slowing down any further degradation in my head.
I know this doesn't answer your question. But - if you have the lesions and the MS drugs can help slow them down while the Lyme drugs work, it might save a few brain cells.
p.s. Get valium for the MRI, those little tubes can be unpleasantly confining.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
| IP: Logged |
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
MRI shows lesions, SPECT shows blood flow. I had a normal MRI but very abnormal SPECT.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
I too am an "MS" er; used to be on Copaxone but am now being treated IV cef. for Lyme + bab and bart. I had lesions on my brain and spine a year and a half ago.
I just had repeat MRI's done; good news is the two on my spine are gone, but more have appeared in my brain. Denise, you may have it right by using both meds. Now I will have to ponder this.
When I was dxed with MS, I had spent five weeks in a wheelchair. I am able to walk now. I would say the biggest difference (I think) between MS and Lyme is that with Lyme you feel "sick" or "toxic" inside, whereas MS is more neuro and pain issues. Just my thought.
Posts: 374 | From United States | Registered: Nov 2008
| IP: Logged |
bettyg
Unregistered
posted
i had a mri 3-5 yrs. ago. mine showed a mini-stroke BUT NO LESIONS and i've had chronic lyme 39.5 yrs as of now! so lesions should have shown up
IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Lyme Neuroborreliosis: Manifestations of a Rapidly Emerging Zoonosis P. Hildenbrand, D.E. Craven, R. Jones and P. Nemeskal
American Journal of Neuroradiology 30:1079-1087, June-July 2009. Published ahead of print on April 3, 2009.
Complete full text: http://www.ajnr. org/cgi/content/ full/30/6/ 1079
Review Article
* Summary
Lyme disease has a worldwide distribution and is the most common vector-borne disease in the United States. Incidence, clinical manifestations, and presentations vary by geography, season, and recreational habits.
Lyme neuroborreliosis (LNB) is neurologic involvement secondary to systemic infection by the spirochete Borrelia burgdorferi in the United States and by Borrelia garinii or Borrelia afzelii species in Europe.
Enhanced awareness of the clinical presentation of Lyme disease allows inclusion of LNB in the imaging differential diagnosis of facial neuritis, multiple enhancing cranial nerves, enhancing noncompressive radiculitis, and pediatric leptomeningitis with white matter hyperintensities on MR imaging.
The MR imaging white matter appearance of successfully treated LNB and multiple sclerosis display sufficient similarity to suggest a common autoimmune pathogenesis for both. This review highlights differences in the epidemiology, clinical manifestations, diagnosis, and management of Lyme disease in the United States, Europe, and Asia, with an emphasis on neurologic manifestations and neuroimaging.
Lyme borreliosis is a tick-transmitted multisystem inflammatory disease caused by the spirochete Borrelia burgdorferi sensu stricto, in the United States and Borrelia garinii and Borrelia afzelii in Europe.
With approximately 20,000 new cases reported each year, Lyme disease has become the most common vector-borne disease in the United States.
The Lyme disease syndrome, manifest as erythema migrans, meningopolyneuritis , and acrodermatitis chronica atrophicans, was first described in the early and mid-20th century in Europe and later recognized in the United States in Old Lyme, Connecticut, in 1976.
Lyme disease was subsequently linked to the recovery of a previously unrecognized spirochete, B. burgdorferi, which is transmitted by the bite of the Ixodes tick (Fig 1). After sustained attachment of the infected tick to the host, the spirochete is transmitted to the human host in the tick salivary secretions.
This review will highlight the differences in the epidemiology, clinical manifestations, diagnosis, and management of Lyme disease in the United States, Europe, and Asia.
Emphasis is placed on the diagnosis and clinical spectrum of Lyme neuroborreliosis (LNB), with special attention to the varying features of corroborative diagnostic neuroimaging.
Complete full text: http://www.ajnr. org/cgi/content/ full/30/6/ 1079
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
I don't know that there are huge, definite differences in MS symptoms and Lyme neuro symptoms. Especially when you consider how often Lyme is misdiagnosed as something else, like MS.
Now that I know I have Lyme under the MS, I don't notice any differences in the symptoms I used to associate solely with MS - spasticity, weakness, fatigue. I am more aware of the odd Lyme things that I used to think were MS (since in me it's the same thing). I think what's good about knowing that Lyme is under it all, is that now my entire set of symptoms is looked at as one complete picture of my health, instead of just the neruo symptoms being separate from the gastro issues, etc.
Snailhead, I'm glad you're able to walk now - that must have been scary! I'm hoping to avoid the whole wheelchair thing....
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
| IP: Logged |
Just curious...what is the difference between "lesions" and what my MRI reads - "hyperintensities in the deep white matter." Anybody know? My symptoms are completely neurological. Prior to diagnosis, non LLMD's told me my MRI was "normal." I think they wrote off the hyperintensities to migraines (which I'd NEVER had) and my age, 43.
Once I finally got figured out it was Lyme and company. The couple of LLMD's that I've seen say my MRI "certainly isn't normal" and indicative of the Lyme and company...so, "lesions vs. hyperintensities?" Just wondering... Thanks. TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
posted
Hi tickssuck. I had similar results on my MRI. It said something about nonspecific hyperintensities possibly do to head trauma or migraine.
All the neurologist cared about at that time was ruling out MS. I've had several MRIs over the years but only the last one (3 years ago) mentioned the lesions.
Are spect scans better?
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
All three of my brain MRIs show the same number of white matter lesions - no improvement in five years of treatment (I've only been on orals and IM, not IVs).
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
posted
Not to long ago there was a powerpoint posted that was developed to train docs in CA when to suspect Lyme in neuro cases. There were only four things significantly different between the two, MS and Lyme.
I was originally dxd with MS. And what I understood is that, like Lyme, the symptoms vary from person to person. I researched it a lot and quite honestly I couldn't find the difference.
Personnaly, like my LLMD, I think they are the same disease, until proven otherwise!
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
| IP: Logged |
posted
From the way I understand it hyperintensities and lesions are the same thing. Under certain sequences used during an MRI, areas of the brain that have lost their myelin will show up as bright white areas because they have a different density than the normal surrounding brain tissue.
They recently found 3 new brain lesions on my MRI raising the total to 16. None are typical for anything apparently and no one can tell me if it is a big deal that I have 3 more.
I really was hoping to see that some of the old ones were healed after doing abx for about 9 months.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have not read what others wrote as not able to right now.
But, IMHO..I had white matter on the brain and then it changed...this was before treatment and dx.
MS was one of the conditions considered. I checked in with the MS site and learned that they too had the white matter come and go.
So, not so sure what all that is about and doubt most medical personal know too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
bettyg
Unregistered
posted
tracy, many of us can't read 1 or 2 words on a line and each line ending somewhere else vs. all ending on right margin area .... fyi
again, this darn lyme has effected us each so differently on what we can comprehend and NOT comprehend ...
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[cussing]](graemlins/cussing.gif)
Printer-friendly view of this topic