Just wondering if anyone else has had this happen to them? I know lyme can cause spots on brain,which I have. LLMD says I don't have MS,and that ANY neur will say MS. He says it's from late stage chronic lyme.
My symptoms got better on antibiotics.
I just have a little bit of diizziness and get headaches.
Use to have alot of symptoms that went away on meds. Left side numbness was one that took forever to go away.Finally went away a few months ago. Don't want to take the shots,emotionally and physically hard. Any info. about this would help,or if it happened to anyone else. Thanks in advance! Posts: 18 | From tickland,pa | Registered: Jul 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
So who told you, you got to do the MS drugs? Why are you listening to them and not your LLMD?
MS is really just a label...multiple sclerosis, defination- multiple hardening, which is multiple lesions.
It is just a symptom that due to MDs and researchers not looking for the cause over the years it became a disease unto itself.
You are already resolving issues but it sounds like you still have Lyme/co-infection symptoms. IMO should still be in treatment.
I was dxd MS for 17yrs before finding a llmd & getting properly tested. I never did the "MS" drugs.
look at LDN - http://www.lowdosenaltrexone.org used for MS, Chrohn's, HIV and now Lyme. That is the only "MS" drug (a pill) I took and will ever take.
Do a search here for the LDN discussions.
BTW since doing lyme treatments I have no new lesions & none enhanced.
posted
11 years ago they told me I have MS, put me on Avonex, an interferon. I quit taking it 2 years ago because it made me feel horrible.
2.5 yrs ago I found an LLMD who suspected Lyme. Three months I had a relapse and found a neurologist who ran another MRI, which showed a LOT more lesions. I'm still having a lot of trouble with the left leg not working and cognitive stuff.
I've been trying to start the Lyme abxs, but have had some nasty stomach problems, had to have my gall bladder out, etc.
Based on the definition of MS being lesions in the brain, I have MS. I also have Lyme. I believe the Lyme has caused the MS. Whatever caused the problem, I do have demylination going on my brain and that's not good.
So, with my LLMD's blessing, I chose to start one of the MS drugs, Copaxone. It has no known drug interactions and should not interfere with the Lyme meds. My hope is that it will slow/stop the lesions forming while I get treated for the Lyme.
I'm seeing the neuro next week, the LLMD in 2 weeks, and am hoping to start LDN at that time. I really need these symptoms to go away.
A neuro who sees lesions combined with numbness, other neuro symptoms, etc., will most likely say you have lesions (MS). My neuro does not discount that I have positive Lyme, but he (and I) believe that I need to treat both conditions so that I have the best chance of getting better.
You do have options.
-------------------- 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
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
My orig. neuro was leaning towards an MS diagnosis because I had very hyper reflexes, clonus, buzzing heels (L'hermittes sign) etc. But when my MRI came back with only one small lesion he dismissed the MS dx and pretty much dismissed ME too.
I think MS and Lyme are one and the same. MS is just when Lyme forms lesions.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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