posted
Hi Monica, My husband was dx'd with MS in 2004. He had a sinus infection, was given abx and steroids by GP. Felt even worse and was referred to an ENT. ENT said his symptoms sounded "neurological."
An MRI showed multiple white matter lesions on brain and spine. Evoked potentials were abnormal for vision and hearing. Spinal Tap- no oligoclonal banding but elevated leukocyte count. Labcorp Western Blot was negative.
We were just absolutely clueless and followed the party line like good soldiers. Finally, we wised up and learned a lot about abx and MS and decided to give it a go. Lo and behold on doxy and zith, major herxheimers and he started to feel better (when he wasn't feeling awful).
After 8 months of self-treating (I don't recommend this, but it was our reality)we made an appt with a LLMD in Ct---awesome guy. Did all of the lab work, but given my husband's history he dx'd him on the spot and we continued the abx at higher dosages (still working up and adding Tini later). Igenex test came back negative but IgG had IND for bands 31, 39 and + for 41. IgM was only IND for 41.
What is astounding to me is that the neuro never even considered Lyme in the differential dx of my husband. To him a negative WB form labcorp meant my husband did not have lyme.
He never bothered to ask my husband about his lifestyle--we lived in the Lehigh Valley in Pa, for goodness sake. We had spent the previous year clearing a heavily wooded 2 acres around our house. My husband spent hours in the woods and fields of Pa as a youth and spent a good chunk of a couple summers fun at one of the country's most Lyme endemic military bases--Quantico, Va--where he had scads of ticks embedded.
Sorry, my frustration is showing through here!
This is our story and I'm sticking to it .
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
posted
I was dxed with MS due to: 2-3 small lesions showing on brain MRI, IgG in my cerebrospinal fluid (oligoclonal bands), optic neuritis and a negative ELISA for Lyme.
4 years later I was dxed with LD with a CDC positive IGeneX Western Blot. I was seronegative for coinfections but several months into tx tested positive for Babs. 1.5 years into tx I was feeling a lot better but still had some lingering sx, I read Scott F's summary of a 6/06 (I think) conference where Dr. B listed Bart sx and the lightbulb went off: the soles of my feet were sore - a Bart sx. I requested Bart tx and have been herxing mightily and increasingly for the past 10 weeks.
I'm now told that I should be feeling much, much better in the few months. If the herx is an indication, the Levaquin is getting at those lingering sx.
Lyme tx is hard but it's so much better to have something treatable! D
Posts: 261 | From San Mateo, CA | Registered: May 2005
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Thank you for your responses.
The reason I ask is that there is no doubt I have Lyme, but the LLMD and neuro I am seeing think I (may) also have MS.
However, my MRI did not show lesions, but "abnormalities" in the white matter.
What were your symptoms?
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| 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!
![[Wink]](wink.gif)
.
Printer-friendly view of this topic