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Posted 4/3/2015 12:14 AM (GMT 0)
Got my meds and ready to start, think I will wait until this weekend. My silly mind started in again, how can a top neuro be wrong and this llmd be right, it's not ALS its lyme. I know I have nothing to lose but money, but I get so scared. If my llmd is wrong i could make my days really bad when I should be enjoying them.

My cd57 and c4 are what points in the direction of lyme. My WB are just at equivicol.

I had a appt next week to see another neuro about that bad three letter word, I decided today not to go and now have a sinking feeling.

Can that top neuro really be wrong? He says he never has been? I wish I would have went to that llmd first, I had no idea until after that first dx that lyme was really out there and caused these type of nasty symptoms. Why can't I just stay the course, believe and have hope? I want that more that ever but rationale Kim says how can one be so wrong and the other right?

I am sorry, just down tonight. I want to get well. I don't want to think of the suffering either disease will cause

cry cry
Posted 4/3/2015 12:28 AM (GMT 0)
It's so unfair that we go through this. Without really accurate testing, we are left to try to find our own way through.

I had a doctor yell at me at near the top of his lungs that if I didn't start MS treatments that day that I would die soon. It was not easy walking out of that office. The symptom list for MS wasn't quite right for me - but boy was I scared!! I had two young children at home back then and if I was wrong, they might have to pay for it too. But that doc, and many, many more have been wrong about what is wrong about me. And I'm far from the only one with a story like that. Many of us here do!

There is some component with these infections that actually can cause us - most of us actually- to doubt or go into denial about having these infections. And that's besides all the public pressure that we face having these infections with the way people see us!

The thing you have going for you is that Lyme treatments won't worsen ALS if that's what you should have. A few months and you will likely know for sure if you are responding to treatments and if so, that confirms it's Lyme. You can go through Lyme treatments and then go to ALS if necessary (and we all hope not!!) - but ALS treatments likely wouldn't help a Lyme infection at all.

So yes, that top Neuro can be very wrong if he hasn't bothered to learn about the next big thing - Lyme disease. How can he actually diagnose you if he hasn't considered all of the options? And unless he was ILADS trained, then he doesn't have all of the information to make a proper diagnosis.

At least that's how I see it.
Posted 4/3/2015 12:28 AM (GMT 0)
How would the neuro know if he was wrong? Everyone he diagnosed most likely accepted that it was ALS and went down that path...untreated and eventually succumbed to it.

Did you see the video on Dr. Martz? I bet the neuro who diagnosed him isn't admitting anything.


Also, maybe some of the people who do have ALS - have it as a result of lyme infection. And, had they treated the lyme infection...would not have succumbed to ALS.


All I know, is the Docs don't know everything...and misdiagnoses happen all the time...
Posted 4/3/2015 1:45 AM (GMT 0)
I totally agree with Girlie and Traveler.
Posted 4/3/2015 2:50 PM (GMT 0)
"Did you see the video on Dr. Martz? I bet the neuro who diagnosed him isn't admitting anything."
LOL!! Girlie!! That reminds me of the Neuro who diagnosed me with "Bell's palsy likely due to Lyme disease" in 1999, but when I returned in 2008 asking for help, he completely denied the fact - stating that "no one would find that in your record!" And he was right - what he said to me and what he wrote were two different things.

He wasn't going to get caught in that controversy even if he had to lie!! It was almost comical how fast he back-peddled. If he hadn't been sitting in his chair, he surely would have stumbled all over himself!!!
Posted 4/3/2015 11:18 PM (GMT 0)
Thank you all for your comments, I appreciate you very much 💚💚. I just needed that push, thank you again.
Posted 4/3/2015 11:44 PM (GMT 0)
Hi Kim, I also had a dr suggest it was MS then fibro etc. I knew what it was so I stuck with my instincts. As soon as I got the medication I immediately improved. Without the meds I was in terrible pain and losing cognitive function. Believe that you will get better and help yourself as much as possible. Diet, supplements, detox and read as much as you can. Others here can help you as well. Good luck. :)
Posted 4/4/2015 12:20 AM (GMT 0)
Kim,
In the Neuro's mindset he has to be right because in his medical word Lyme doesn't exist. He's taking your symptoms and applying them to his acceptable group of diseases.
He was taught if the patient checks X amount of box's in column A and column B then they have disease -----

Trust your LLMD and if you don't end up having a positive relationship with find another one.
Posted 4/4/2015 1:20 AM (GMT 0)
My other theory is that they don't have a known cause for ALS and thus no known treatment.

So, even for the cases that truly are ALS - maybe the cause is bacterial...who knows, right? What if the answer was long-term antibiotics?
Maybe they've tried that...but probably not. If they did do a trial with antibiotics for ALS, they would have most likely stopped at 4-6 weeks...and said, 'Nope, not bacterial or it would have cured it by now"...the same way they do with chronic lyme disease.

All I know is....we have these illnesses that have no cure - ALS, Parkinson's, MS....what if it is caused by a parasite?
Posted 4/4/2015 1:54 AM (GMT 0)
I read a very interesting article last night about a dr who believes that all MS, ALS, Parkinson's & Alzheimer disease are actually caused by bacteria from Lyme and 90 MS diagnosed patients who were autopsied had living spirochetes in their brains.

Another theory is that borrelia Burgdorferi can act as a trigger for autoimmune T-cell reactions within the central nervous system.
Posted 4/4/2015 1:27 PM (GMT 0)
I hear you, no one really knows the why of those awful disease's, I am not sure why anyone would stick someone in that bucket without knowing for sure that is what one has. It really is devastating to hear that you have any of those as a dx, even Lyme. Its crippling and most don't even think there is such a thing, so we all suffer, no matter the DX.

I started my ABX this am. Anti malaria yesterday. Moving slow but I will beat this, I do believe and I do have hope.

I want to be the testimony that they are wrong and that they have to see that Lyme is the cause. Maybe this can change things for others that suffer and are dx'd wrong like myself and others here.

All I know is that I get my strength from here, from your help and from friends and family. I would be sitting waiting to die slowly had I not believed hard enough they were wrong. I have to keep telling myself that and get better!
Posted 4/4/2015 3:53 PM (GMT 0)
And coming back here to get support for the moment too!! Wer are here for you - we are all in this together.

Remember to detox, detox, detox and that the beginning of treatments are always the worst. Things improve after that.
Posted 4/4/2015 4:46 PM (GMT 0)
ALS was in the news here recently, telling how several employees of one company have/had ALS, so chemical exposures can possible be one cause too.
Posted 4/4/2015 5:42 PM (GMT 0)
Just wanted to let you know that I've been reading your posts and am really rooting for you and hoping that the lyme treatment works for you! I'm a very long way away from you (in the UK) but thanks to this forum I can follow your updates and send you my support and good wishes - good luck with it all, stay strong and positive, and I hope that the treatment works out for you. Do keep us posted. Sending hugs & best wishes :-) xx
Posted 4/4/2015 6:04 PM (GMT 0)
Thank you Flossie, means a lot.
Posted 4/5/2015 5:49 PM (GMT 0)
Just checking back to see if you've started treatment yet...and if so, how you're feeling.
Posted 4/5/2015 6:31 PM (GMT 0)
I was in my llmd's office last week. As I sat in the waiting room, a lovely woman made conversation with me. She said that her 21 yr old cousin had passed away the day before.

He had been sick since he was 13. He ultimately was diagnosed with ALS. They simply kept him comfortable over the years. At some point before he passed, he was finally tested for Lyme. It was positive. No one had ever thought to test for Lyme before.

He probably could have been saved if he was treated aggressively for Lyme in the beginning. Such a waste of a precious life.

If I was in your position, I would demand IV treatment ASAP. I would not waste time. But that's just me......

I strongly feel that we need to learn from some of these sad stories. Lessons need to be learned! I hope all you have is Lyme. It stinks that there is no real testing for these diseases. My thoughts and prayers are with you. I am so sorry that you are dealing with this. Lean on us when you need to. We will be here.

Xxoo
Posted 4/5/2015 6:52 PM (GMT 0)
That's a sad story Utahgal!

There should have been some suspicion - getting ALS at 13 years old - that must be rare! And then he lived 8 years.. which is quite a bit longer than the norm.
Too bad they never knew to treat for lyme....
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