posted
That is what my doctor is saying what is wrong with me. I was first diagnosed with MS, treated for it and became VERY ill.
Anyone else out their that have been told this? Anyone with a MS diagnosis first and then recovered? I have been in treatment for 2 years now and am fearing that I w3ill never get better. I have seen lots of improvements, however I guess at the moment it is my vision that most concerns me.
Thank you for answering,
Kuda
Posts: 158 | From canada | Registered: Jan 2010
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posted
There are quite alot of pepole that get told they have MS when they really have undiagnosed and untreated lyme disease. ive honestly heard SO MANY stories about it. its more common than you think
plus. if someone has lyme and they do MS treatment. they get MUCH WORSE. I believe that might be whats happening to you
have you been tested for lyme disease at all? if you havent you should. and even if you dont test positive for it I think you should go to an LLMD and try to get treated. what you think is MS might just be untreated lyme.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
I was first dx with MS then tested Igenix positive for Lyme years later. I did 3 years of Avonex injections and a year of Immunoglobulin infusions. I got no better on MS treatment.
What it gets called depends on what doc you see. In my experience, a neurologist will always say MS and an LLMD will say Lyme.
Posts: 252 | From NJ USA | Registered: Mar 2004
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I was first diagnosed with MS.
Found out later it was Lyme.
Treated for Lyme and co-infections for about 3 1/2 years, and I'm better now.
There's hope.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I was first told I had MS... I eneded up having lyme, babs and bart... I think MS is ALWAYS lyme...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I was first told I had MS... I eneded up having lyme, babs and bart... I think MS is ALWAYS lyme induced...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
Thank you to everyone for replying, you all gave me some hope !
Posts: 158 | From canada | Registered: Jan 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Yep. I was dx with MS as well. Luckily for me I did my research and went to an LLMD before doing any MS treatment.
I think you would have gotten better a lot faster if you had not been on the MS meds first. But there is hope yet! Just remember this disease (Lyme) can take a long time to treat.
You have seen improvements... thats a good sign!
I'm not 100% better, but I'm functional and living a mostly normal life. WAY better than when I was first dx with MS!
-------------------- 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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posted
Me, too. Diagnosed with MS and found out it was Lyme. I was given Lyme info from an online friend who had progressive MS and found out it was Lyme. She had so many lesions and now has only a few. Someone else online told me all their lesions disappeared.
posted
I forgot to mention that there are drs. who think MS is late Lyme. My LLMD says when you think MS you have to think Lyme, too.
I emailed my friend to see if she is a member here and mentioned dropping by this post. She did have ON.
Posts: 472 | From NJ | Registered: May 2009
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posted
I had optic neuritis too...went blind in my left eye. Also had lots of other MS symptoms, tripping over my feet, vertigo, migraines, buzzing, twitches, etc. Many doctors wanted to say MS but my neuro insisted I didn't have it. My MRIs and spinal were clean. My reflexes were abnormal -- just not hyper -- I actually don't have reflexes in my knees since getting Lyme.
Antibiotics fixed most of my MS-like problems.
I am proof that you can have lots of MS-type symptoms and get better.
Posts: 45 | From New Jersey | Registered: Sep 2008
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posted
Sorry to hear that... I've read that lesions can go away with treatment. I hope that happens for you.
Posts: 45 | From New Jersey | Registered: Sep 2008
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posted
My PCP is leaning toward MS. I have an appointment with a second neurologist at the end of the month. I just saw a LLMD last week for the first time, and I have clinical diagnoses of Lyme, Babs, Bart.
She told me to keep the neuro appointment, but I am going into it with a very skeptical point of view. I will have blood work back (although that is so sketchy that it can't be relied on) and have started abx by then, so I will have some idea of a reaction.
If I remember (yep, brain fog), I will PM you after my neuro at the end of the month.
Best to you, MA
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
I was also diagnosed with MS & it was actually Lyme
-------------------- Neuro-Lyme (possible bart) Symptoms started Jan 2011::Diagnosed Feb 11th,2011:: *Anything is possible thru God who strengthens me* Posts: 775 | From Pennsylvania | Registered: Feb 2011
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posted
I am starting to give up, maybe I should just accept the MS diagnosis... However I think I would be fine if I had not been bitten by that tick when I was 10 years old... I remember laying in bed talking to my dad "shorty after the bite" and I was so scared I was crying, I remember saying I don't want Lyme disease dad...
I also remember taking pills for a few days after the bite. I am guessing ABX. It was for maybe a week or so, can't remember...
Posts: 158 | From canada | Registered: Jan 2010
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posted
I am doubting treatment right now Lymetoo i did two years of orals and i am worse off than before... Better in small ways, but limping and optic neuritis worse... I recently just started IV doxy, am skeptical because I have been on and off oral doxy so many times. I think the bugs are immune?
This is also very difficult living in Canada. All the docs up here and saying MS, MS, MS... Their are no lyme docs up here...
Are you better Lymetoo? You have a lot of posts lol!
Thank you for your support.
Posts: 158 | From canada | Registered: Jan 2010
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posted
I am in treatment from a doctor in Seattle, I did 15 months of rebiff when I was 21-22... Am now 25.
Rebiff is not a steroid but suppresses the immune system. I became a sicker.
Two years of orals with US Doc and now on IV doxy for almost 2 weeks. Soon I am going to suggest switching to Zithromax IV. The neuro stuff hasn't improved with the orals. I tried IM Rocephin but I can't handle it ...
Maybe I will suggest IV Tetracycline.
I am just losing hope. ...
Congrats for getting well ! I hope I can join you someday.
posted
My LLMD prescribed it for me. I took 2 mg for the 1st month and just started on 3 mg last week. I am hoping it helps my colitis and Lyme, and anything else it can.
Posts: 472 | From NJ | Registered: May 2009
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posted
I was diagnosed with MS, a borderline case in that I had only a few minor MS symptoms. The standard Lyme tests were negative and I had some lesions on my brain & spinal cord. I also had a history of unexplained fevers and bouts with aches and pains and weakness. I thought I probably had Lyme but thought that the docs knew their stuff so I went with the MS treatment. I gave myself daily injections of Copaxone for about 3 years. I got worse and worse actually thought I was gona croak. The Copaxone came by FedEx monthly and a screw up on my order saw my last delivery of that drug come 2 weeks late. Well I improved in those two weeks w/o the immunosuppresent (sp)and decided that I had better find a Lyme doc...found one and we discovered I had Lyme and Babs. I took oral meds for a little over 3 years and am okay now BUT that damn Copaxone allowed the Lyme to do damage to my body that I will always have to deal with. I had a tough time on the meds but suddenly I was better and one day I realized that I had beat it. Don't give up yet.
Posts: 11 | From Maryland | Registered: Feb 2006
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posted
I am not convinced of the connection with brain lesions and MS symptoms. from what I have read there are many folks with no lesions and symptoms and no symptoms and lesions. I am sure it is better to not have them, but this connection is not as clear as folks think IMHO
Posts: 357 | From California | Registered: Jun 2010
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posted
Interesting thought process Matt... I unfortunately have classic MS symptoms, whatever MS is...
Was bitten by a tick when I was 10 years old, it injected a numbing agent into me that's how I knew. I don't know what to do anymore but what I do know is I have had enough...
Thanks for writing Matt!
Posts: 158 | From canada | Registered: Jan 2010
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! Thanks guys!!! I just keep getting these relapsing remitting multiple sclerosis type symptoms.![[Frown]](frown.gif)
i did two years of orals and i am worse off than before... Better in small ways, but limping and optic neuritis worse... I recently just started IV doxy, am skeptical because I have been on and off oral doxy so many times. I think the bugs are immune? 
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