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 Post subject: I have brain lesions
PostPosted: Mon Aug 11, 2008 2:25 pm 
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My MRI results are in and I have brain lesions....

Very bummed -
Dana

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 Post subject: Re: I have brain lesions
PostPosted: Mon Aug 11, 2008 3:32 pm 
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Sweetie, I'm so sorry. I tried to call u back a few times, even tried your cell. call me back if you get this.

love you honey.
j :hwings:

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: I have brain lesions
PostPosted: Mon Aug 11, 2008 4:08 pm 
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What exactly does this mean for your treatment wise?

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The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31
http://www.jmgarnet76.blogspot.com


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 Post subject: Re: I have brain lesions
PostPosted: Mon Aug 11, 2008 5:51 pm 
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Dana, I'm sorry about the lesions!

I have heard several stories that lesions have healed with Lyme treatment. Not that you want to have an MRI again.

My psychiatrist told me that once you have lesions they can never heal - but Lymies tell another story and they have the MRI's to prove it. Just want to make you feel better.

Love, Hugs and Blessings,

Molly


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 Post subject: Re: I have brain lesions
PostPosted: Mon Aug 11, 2008 7:52 pm 
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Ironically, as I sat crying today the phone rings and it is my LLMD. He was calling to check on Danny before he leaves for vacation for the next month.

He simply said, "Yes, you have lesions...just like are seen with MS patients. But I don't want you to worry, this changes nothing. Lesions are usually asymptomatic, you are NOT sentenced to a life of hellish pain Dana".

I was amazed he called, he has called me twice, both times I was upset about test results! He must think I cry non-stop.

I have to make sure Lyme has not turned into MS.

Klinghardt (as you saw in Under Our Skin) believes LD can turn into MS. Schaller believes MS is untreated Lyme.

I have no idea what to believe.

I do know this...no matter what I would never treat MS with their treatments - IV corticosteroids.

I have tried to piece this together and come up more confused. MS is believed to be caused by viruses, I have all the viruses necessary to create MS.

BUT - I herx on abx horribly.

I have cried so much today I honestly have worn myself out.

Obviously Lyme Md's are going to say Lyme...if I went to a mainstream neurologist he'd say MS.

I have to go back to the beginning....I FELT A DISSEMINATION, I felt it. But that too is confusing, did I feel viral dissemination and they "found" Lyme accidently?

I know this.. the last LLMD I will see is very "open" to all possibilities. I know he believes MS exists, so that is good...he hopefully can tell me if LD has turned into MS as Klinghardt believes it can or if I should go on treating w/abx for Lyme.

I do STILL have a positive IgM Lyme test, Ehrlichia is still positive...but even the positive tests don't have me convinced. I know lesions are seen in Lyme Disease....but all the neuro stuff I have had doesn't seem "lyme normal" to me.

See what I mean? I will have blood tests come in, in the next week or so as well, some that can possibly tell if I am now dealing with an autoimmune disease. Last time I had these blood tests, they indicated nothing autoimmune. We will see this time.

Love you all. Pray for me (AS USUAL) that this is sorted out without a doubt... I need a miracle.

Oh, I spoke with the MRI tech..they said what I felt "peripheral nerve stimulation" is very likely, but doubt it will last forever. Then she added, "But MRI's have only been around 25-30 years, we are still learning what can be harmful from it".

Ok...onward in faith...no matter what is happening in this body, even though I don't know, I know the ONE who does know and "I am healed by His stripes".

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 Post subject: Re: I have brain lesions
PostPosted: Mon Aug 11, 2008 9:54 pm 
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Do not worry !! You are not alone! My LLMD said a typical illerterate neurologist would read lesions as MS.You know what they are Lyme cyst!!As for MS I wonder myself if it's not out of control untreated Lyme .You've been fighting the battle, your on the right path.I worried myself sick over MS,almost gave up and gave in.I couldn't handle the orals either and I know it's only been a month but I've had a taste of life back, heck I just had a fibroid removed on fri and I've bounced right back UNBELIEVABLE is what my husband said.I'm in unchartered territory as for the IV herxing but I know what I've tasted and life hasn't felt this good in years!!!!!Please don't give up ,have you ventured any farther into IV??My prayers are with you. :prayer:

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 Post subject: Re: I have brain lesions
PostPosted: Tue Aug 12, 2008 12:33 am 
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Thanks Desi,
I will talk with a 3rd LLMD on the 28th I gues...LONG trip so I dread the thought of it. Yes, I know he will likely want me on IV....he's the only LLMD I know of here in CA that uses IV farily quickly and had I seen him first, it might have saved me all this pain long ago.

The closer I get to actually thinking I might do IV ...I get apprehensive, yet it is something I have wanted since day one.

Thanks for prayers...
Dana

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 Post subject: Re: I have brain lesions
PostPosted: Tue Aug 12, 2008 6:07 am 
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Dana my friend who reported her cure from Lyme this spring had lots of brain lesions - and still does! Your brain is huge and mostly unused, it can compensate for the hindered parts. She is still feeling perfectly WELL.

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 Post subject: Re: I have brain lesions
PostPosted: Tue Aug 12, 2008 10:12 am 
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Susan - you don't know how much that helps! She had neuro symptoms too didn't she...did she have nerve pain?

I know they can go away, I know they might not, I hope they do, but more than that I just want to be out of pain.

Thanks for the words of encouragement,
Dana

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 Post subject: Re: I have brain lesions
PostPosted: Tue Aug 19, 2008 12:50 pm 
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Terrible nerve pain and such severe neuro involvement she thought she was dying. I saw her last weekend, and her beautiful new stallion. He's HUGE and her balance is so perfect she is training to compete again. She had totally given up horses she was so sick. Hang in there Dana. We love you!

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 Post subject: Re: I have brain lesions
PostPosted: Tue Aug 19, 2008 1:57 pm 
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Thanks Susan! Did she have co-infections? She sounds so much like me, I can't get over it! Did you see my other post? Apparently I have had brains lesions for 9 years and didn't know it! I lived 7 of those years pain-free. So I know I can do it again. Here is my other post read my first and second post, I was able to talk to the neuro-radiologist Md directly and he told me nothing in 9 years has changed, this was interesting and encouraging! Link to other post: viewtopic.php?f=9&t=592



Tell me again...she used flagyl right? Anything else? I have not used flagyl...If you can remember her protocol, please let me know.

How is our precious Laine? I hope well!!

Love,
Dana

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 Post subject: Re: I have brain lesions
PostPosted: Wed Aug 20, 2008 10:43 am 
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I'm sorry our university does not let us view youtube, it is blocked. But I will look at home. Yes she suspected she had coinfections but didn't get tested for them. She finished up with Flagyl. The abx that turned the corner for her was that one you don't approve of, can't think of the name, it may be taken off the market because of tendon damage? Levaquin maybe?

Laine is good. The last month of her summer was way too taxing and she is exhausted this first week of school but try and tell a 16 year old not to have fun! She is functional and still caught up in her classes. We have begun the process of training a whole new group of teachers and support folk in the ways and means of a Lymie. We go to our dear LLMD this weekend and I'll let you know what he says.

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Susan


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 Post subject: Re: I have brain lesions
PostPosted: Wed Aug 20, 2008 11:01 am 
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I gave you the wrong link Susan! I put the corrrect link above..it is to another link at this forum.

Levaquin? Well it is not that I don't approve, it is a dangerous drug and absolutely cannot be taken w/tendon pain, which I have, it is outlawed in every country but the U.S. and then it can cause permanent damage, so can Flagyl though - flagyl causes cancer, I actually know a lymie who got cancer after a long course of flagyl. But there are many LLMD's that won't prescribe either. One here in California (I was watching a conference) mentioned the dangers.

Truth be known the only safe drugs that I can find are Doxy and Amoxi ...the rest cause some "horrendous" new problem.. I know of no way to get well without taking a huge risk it seems. Ugh...

BUT...

I am getting to the point I will drink poison if that is what it takes. Really this is too much anymore.

Thanks for the encouragement Susan - I need it. I am glad Laine had a good summer, yes keep us posted when she goes to her LLMD.

:bhug:
Dana

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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