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» LymeNet Flash » Questions and Discussion » Medical Questions » LYME INDUCED MS?

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Author Topic: LYME INDUCED MS?
VICLYMEMS
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Anyone out there been Diagnosed with Multiple Sclerosis before they finally were diagnosed with lyme? Or had an MRI that showed brain lesions?

I was, then put on Rebif Interferon Beta 1 and it made me quite ill...

I guess I am now looking for successful stories of recovery from this awful illness, and a doctor who is well versed in Lyme/MS?

Thank you all for your time [Smile] !

Posts: 3 | From VICTORA BC | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
imagine2
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I was diagnosed w/MS by 3 neurologists....was put on Avonex and got extremely ill.

Luckily I got to an LLMD. Still have brain lesions but am thoroughly convinced I'm on the right track. Have improved a lot.

Please find an LLMD and get started on treatment. Have you posted in Seeking a Doctor for an LLMD close to you?

God Bless!

Posts: 677 | From Virginia | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
needhelp38
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Hello what you wrote above is my story.

I had been diagnosed by 3 neurologists one even at the Cleveland Clinic that specializes in MS. I have brain lesions still but pretty much all the other symptoms have diminished.

At first I had Bells Palsy 5 times in my life. The last time was two days before my throat collapsed on me and I couldn't swallow.

Then I when I went to the hospital for tests, they said I may have had a stroke or I may possibly have MS. This went on for a few months with a "possible" diagnoses. So I went and saw another neuro he too said maybe MS. I was working full time and going to school part time and my world was turned upside down.

I couldn't take a maybe or a possible I needed to know so I ended up going to Cleveland Clinic. By this time I was in a wheelchair couldn't talk, couldn't concentrate, had no memory,couldn't even write my name because I would shake, couldn't move my left side well, numbness in my hands and feet.

Buzzing, tingling, and bugs crawling sensations in my body and pain everywhere especially my feet. I was going blind from optic nerve damage, and just felt like my life was ending.

He started me on Copaxone and the longer I was on it the sicker I became.After 6 months I started having heart problems and my neuro actually giggled and said MS doesn't cause heart problems.

So of course I walked out of his office pretty angry and started doing my own research. I looked up a LLMD and made my apt. From that point my life started looking up.

Now I am walking on my own - no cane no wheelchair, my vision has come back I even got my drivers license back. I still have pain in my body but nothing like I used to have.

The only thing that has not changed is the pain in my feet. I know I have Bartonella and Babesia. And I know that Babesia is what I have the worst because I have a horrible reaction from the meds for it.

Whatever you do, don't settle for a diagnosis of MS. If I would have I probably would be paralized or even dead.

I was so terrified living through that but with Lyme there is hope for recovery. It is a very long road but you will get better once you get on the right treatment.

FIND AN LLMD I don't know where you are but if you want the name of mine just send me a msg and I will gladly give you her info.

She has changed my life and I know she can change yours. I know how scared you must be just know that you are in the right place.

This forum is the best people and so much help. I hope you find your answers soon and get on the road to recovery. Take care and msg me if you have any questions, I will be glad to help in any way I can. Lisa

--------------------
"Strength does not come from physical capacity. It comes from an indomitable will" - Gandhi
IGeneX results - POSITIVE
Bartonella and Babesia
(Babesia worst of all)
18+
23-25 IND
30+
39 IND
41+
58+
83-93++

Posts: 54 | From columbus indiana | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
t9im
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I don't have all my links on the controversy but watch this video from Michelle who was diagnosed with MS and it ended up being Lyme.

This is part 1 of 2, the second should come up on the right of your screen when you watch the first part.

http://www.youtube.com/watch?v=Lmq-y6EU4AE

--------------------
Tim

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Summer24
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Hey all! New group specifically for lyme induced MSers on Lyme Friends! http://www.lymefriends.org/

I'm hoping that we can have a mini support group for this specific issue.

Just search under groups and you will find it! Thanks

Posts: 24 | From MD | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
sandyk
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Yes, my husband has an abnormal MRI and also had a spinal tap and since nothing showed, the neuro doc for some reason was leaning toward MS and wanted us to start a high dose steroid to see if his symptoms improved. If they did then he said it was MS, if not he said we could try antibiotics but with no positive blood or CSF result for lyme he would not diagnose it.
I am not sure any neuro doc would clinically diagnose lyme.

We got ourselves to an LLMD because we do not believe at all it is MS, and he started Bicillin shots last week. We will carry through with this treatment.

I would suggest to get to an LLMD right away. I'm not sure what the medicine is that you are taking but if it's a steroid, that could definitely made your symptoms worse.

I see you are in Canada, hopefully you can find a doc near you - post in seeking a doctor.

Posts: 159 | From Toms River, NJ | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
twicebitten
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I was diagnosed with MS after being treated for lyme. My insurance company sent me to an ID doc, rather than my llmd, and he in turn sent to Rheum., and she to neuro. He did MRI and found brain lesions that were "consistent" with MS. HOwever, I didn't have many of the other symptoms and so he labeled me MS, atypical and sent me home with a copaxone kit that day. I took it for a month or two, but in the meantime managed to get a 2nd opinion. The 2nd neuro did another MRI of cervical spine area and found no lesions. She said there would be lesions if I had MS. So, I quit the copaxone and got many emails and phone calls about starting it back up from the company. Even though I told them I'd been mis-diagnosed.
The 2nd neuro. Rx'd stuff for migraine and did a lyme PCR, but wouldn't treat my lyme and became quite obstinate about it. She finally gave me an RX for penicillin shots, which the insurance failed to cover and after paying $500 for the PCR tests I couldn't cover their cost of $650.. THis was probably around 2004. I also had PT for my "MS" which was probably good for me.
From my understanding the copaxone inhibits the immune system, as they feel it is overactive in MS. SO, knowing now that my immune system is very weak, taking that wasn't smart..hindsight...

--------------------
One day at a time

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IckyTicky
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I only had one lesion, but was dx with MS due to my symptoms of clonus, hyper-reflexia, L'hermittes sign etc.

Luckily for me my father in law started me thinking of Lyme right before my neuro appointment.
I found an LLMD and came back pos. for Lyme.

--------------------
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  |  IP: Logged | Report this post to a Moderator
VICLYMEMS
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Thank you everyone for writing in this thread, means a lot to me!

I guess one things I forgot to add and I am sure I have more to come. For my first MRI when I was 20 years old I had 14 brain lesions. Just had one a few months ago and now the neurologist cant even count how many I have [Frown] ...

Please keep adding to this thread, I am desperately search for something to grasp onto right now.

Posts: 3 | From VICTORA BC | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
ticksickfamily
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Also, get checked out for Chlamydia pneumoniae (CPN) infection as this can also be associated with MS. I have CPN and Lyme, so you can have both.
A UK Consultant Microbiologist treated his wife's "MS" with antibiotics and she has made an amazing recovery. Follow the link for more information.
http://www.davidwheldon.co.uk/ms-treatment.html

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twicebitten
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Oh and one more thing..I have had 2 spinal taps and both were neg. for lyme as well as MS. I have also had 2 lyme blood tests positive. One was CDC pos. The LP's never found anything new, so I wouldn't recommend them.

--------------------
One day at a time

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dmc
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"MS" for 17yrs before finding the famous LLMD of "Chronic Lyme Disease: Connection to MS- Facts behind the controversy" presentation

http://www.newhaven.edu/unh/lyme/

there are lots of us.

MS ain't what the think it is...check out CCSVI- Chronic CeberalSpinal Venous Insufficieny

Even check out http://www.uppercervicalcare.com the symptom&condition section

MS is NOT A DISEASE but a symptom condition
unfortunately any lesions is labled MS. Itr is just that-a lable.

good luck.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
MattH
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Ticksickfamily,

I took my son to several doctors in Texas with little luck. This site and LymeToo directed me to a doctor in Louisianna.

My son has had lyme from the tick bite for about 4 years, CD 57 was 16 and several WB bands but not CDC positive. He began treatment.

I have several of the same symptoms and think I got bit more than 30 years ago but at 15 had a major infection and think that I pushed it into cysts with three months of abx. However I was not sure.

After taking my son to the LLMD I finally got my first appt. I had a couple of bands on the WB but CDC negative, a CD 57 of 59 and positive for Chlamydia pneumoniae (CP). I have had a stubborn cough for about 12 years that I just chalked up to seasonal alergies.

Both David Weldon and his wife Sarah had CP a respritory bacteria that will spread throughout the body. He has his story and his wife's on www.cpnhelp.org. The treatment is similar to Lyme but not exact.

I started on mino on Tuesday, then every other day with Cholest. Powder, a list of supplements and will start arith 3 days a week starting today. Also lots of Vitamin B and B 12. I am taking a 3cc shot 3 times per week and sucking on a losenge a couple of times per day.

My list of symptoms would appear to come right from the Dr. B list (I just knew I had Lyme) but my LLMD was not entirely convinced.

My improvement has been very good in just 5 days. I continue to do the Buhner Protocol along with the Weldon Protocol. I will get checked for CCSVI after the protocol has worked for a couple of months. I have not had an MRI yet and not sure if I should or need to?

Thank you all for you help and encouragement!!! Based on a response from Polly I tripled my Nattakinese and that have dramatically reduced my edema and leg pain. Today my mind and energy level are much better than it has been 3 years.


All the Best, MattH

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Tennessee1
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Here are some excellent youtube videos filmed by a woman with Lyme disease who was first diagnosed with MS.

Michelle on Lyme, Part 1 --
www.youtube.com/watch?v=Lmq-y6EU4AE

Michelle on Lyme, Part 2 --
www.youtube.com/watch?v=BkBhPSMNPzE&feature=related

[ 07-11-2011, 11:36 AM: Message edited by: Tennessee1 ]

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Summer24
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GET TESTED FOR VIRUSES!!! Chlamydia pneumoniae was a very good suggestion.
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VICLYMEMS
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How are you today? So have had MS for 17 years? Did you get a MRI that showed brain lesions?

How badly did the "MS" effect you? Did you do disease modifying therapies? I did and they made me very ill. Also have tried Lyme treatment. I am now having to use a cane and am very anxious to find someone to help me...

Who and where is this LLMD that you saw? Are you better now as a result? What kind of treatments did he/she do on you?

Take care,
VicLyme DMC your mailbox is full so I cant PM you...

Posts: 3 | From VICTORA BC | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
   

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