posted
Every neuro is saying MS because of spots on brain, going to start Copaxone. SUCKS!!!! LLMD is saying it's lyme,being treated for lyme & co-infections. Any info. about this situation,very confused
Posts: 18 | From tickland,pa | Registered: Jul 2009
| IP: Logged |
My advice is to dump the clueless neuro. Lyme also causes lesions on the brain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Copaxone-from wikipedia
Glatiramer acetate (also known as Copolymer 1, Cop-1, or Copaxone - as marketed by Teva Pharmaceuticals) is an immunomodulator drug for currently used to treat multiple sclerosis. It is a combination of four amino acids found in myelin basic protein, and may work as a decoy for the immune system
Did your LLMD approve copaxone? It messes with your immune system.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
| IP: Logged |
posted
He said it's not MS,like what every other Dr. is saying. I have new lesions on MRI,so I'm confused. Then another Dr. said it could be both, that the lyme caused the spots on brain. Really confused, What should I do?????????????????? Should I start Copaxone?????????????????? Told it won't do anything to harm me. Posts: 18 | From tickland,pa | Registered: Jul 2009
| IP: Logged |
posted
I guess I'm not getting treated correctly with lyme? If I was, would I still get new lesions?????
Posts: 18 | From tickland,pa | Registered: Jul 2009
| IP: Logged |
posted
If it won't hurt you then maybe you have to treat both since you don't know which one it is. Try some blood tests at various points through the antibiotics to see if your system changes the immune system.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
posted
He said it's not MS,like what every other Dr. is saying. I have new lesions on MRI,so I'm confused. Then another Dr. said it could be both, that the lyme caused the spots on brain. Really confused, What should I do?????????????????? Should I start Copaxone?????????????????? Told it won't do anything to harm me. Posts: 18 | From tickland,pa | Registered: Jul 2009
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Many people get new lesions during their Lyme treatment. Many people's lesions go away with adequate treatment.
Take a deep breath and do your research before committing to Copaxone. Some Lyme patients treat their MS and Lyme. As the MS is generally caused by the Lyme (and other infections), most just treat their Lyme.
Many pathogens have been found to be contributing factors in MS-type lesions. My vote would be to treat for all your infections - Lyme, co-infections, opportunistic infections. If your LLMD uses natural medicine (herbs, supplements), ask about products for healing the brain.
Some patients do take MS meds during their Lyme treatment, so it's not out of the question. Just don't take anything that would impair your immune system. You're going to need it!
Good luck!!! Be happy you know about your Lyme. Many MS patients don't know about the chronic infection aspect of MS.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
MS is Lyme or the newly described stealth organism found in Europe in the bowels.
How else have they been hidden for so long??? Every day they learn a little more and draw closer to connecting the dots.
Either way they need treated and a LLMD is the one best to do that...
Because with that stealth--that is probably not all you have...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
quote:Originally posted by janet thomas: It messes with your immune system.
It could keep you from getting over the Lyme.. a SERIOUS problem!!
What have you been taking for the Lyme?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Here's a point...what if?
What if lesions were originally caused by Neuro-borrelliosis?
We know that has Bb dies...it leaves toxins and causes temporary damage to the infected tissue.
What if...while treating Lyme, the lesions in your brain....increased in size or more were produced due to the die-off of spirochetes causing temporary damage to the myelin sheath....
and then...as time passes, those lesions..... disappeared because the sheath....healed as the toxins cleared.
Now....let's say the lesions....caused by whatever infection, its just that we haven't identified it yet.
Now our immune systems would then be bombarding the infection.....fighting as hard as it can and the number one thing an immune system does when trying to KILL an infection...is, kill it by inflaming it....and even though the inflammation seems bad (causing lesions) its only because the infection is being somewhat held back by the inflammatory response.
Now......imagine if you will....how quickly that infection will grows, if you shut down the immune system....possibly allowing the infection to run rampant and spread rapidly across the brain surface as well as DEEEEPER into the grey brain matter.
I'd question the opinions of people that have taken NO interest in Lyme as a Disease....before they tell me its NOT Lyme....when everyone out there knows that Lyme...mimics most other diseases...
Just a rambling thought.
Trout ;-)
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I wonder if the lesions in the brain look like the lesions on the skin many of us get AFTER starting treatment???
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
I hope "lymestinks" read what Troutscout posted.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I would stay away from Copaxone. Very serious decision. I would not do anything to throw off your delicate immune system, as it is the critical component in regaining your health. If you want another neuro opinion, I'd be sure to go to a Lyme Literate neuro. Don't put yourself at risk. I'd steer clear. Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
I have lesions on my scan too. I do not have MS. I have lyme.
Typical to have the white spots with lyme. Listen to your LLMD.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| 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/