Is there anyone here who was told they had ALS and it was really Lyme? My doctor told me I have ALS, but some symptoms don't fit. Help!
Posted by Lymetoo (Member # 743) on :
I'm off to bed, but leaving you this link!
Posted by Blackbear (Member # 41747) on :
I'm glad too! Thank you so much. I will check out the link now. Sweet dreams....
Posted by Robin123 (Member # 9197) on :
I suggest you get the book, "Cure Unknown," by journalist Pamela Weintraub. She follows the case of a doctor who thought he had ALS and it was actually Lyme. He's better now, after treatment.
Posted by gonzo (Member # 41410) on :
I to was told I had ale tested pow for lyme 4 bands I'm glad your here ive gotten lots of help and support you have a long road ahead of you with help you'll get better forget those three letters they get in the way you have friends here that walk with you send me a pm and maybe I could help hang in there
Posted by TF (Member # 14183) on :
My husband's coworker was told he had ALS. So, I contacted him and suggested he go to a lyme doctor. Sure enough, he had lyme disease.
Lyme treatment gave him back a lot of functionality so that he was virtually normal. He deep 6d his own recovery, however, by drinking alcohol all day long every day.
But, it was obvious that the ALS diagnosis had to be wrong. Who ever heard of an ALS patient getting rid of their symptoms like he did? He was able to walk normally again (instead of dragging his legs by using his arms to pull himself up the stairs) once on lyme treatment. He also was able to use his hands to open jars again. He was so happy to demonstrate that. Before lyme treatment, his hands had become claw-like and weak.
And, even with his drinking, when he lost his voice, lyme treatment got his voice back for him.
So, all evidence points to lyme disease in his case. Too bad he couldn't live the clean lifestyle required to recover.
I hope you know that ALS is a "diagnosis of exclusion." That means that once the doctors have ruled out all other diagnoses, then they are allowed to say it must be ALS.
Of course, non-lyme experts think they have ruled out lyme disease when they test the patient with a lousy lyme test and it comes back negative.
But, when that same patient goes to a lyme expert and gets a positive lyme test, then the ALS diagnosis has to go out the window.
There is no test for ALS. So, if you find out you have lyme or a coinfection, then you are not supposed to retain your ALS diagnosis.
I suggest you look at the lyme symptom list on pages 9-10 of the Burrascano Guidelines found here:
See if all your symptoms are on this list. Of course, lyme can cause hundreds of symptoms, so they all may not be on here.
What symptoms do you have that do not fit the ALS diagnosis? I'll tell you if they sound like lyme disease.
Good for you for coming here and asking this question!!
Posted by lpkayak (Member # 5230) on :
it confuses me what kind of doctor is giving out als dx
Posted by gonzo (Member # 41410) on :
I went to three neurologists one from Yale. They told me to sit on my button and eat bacon.
Posted by LymeSwimmer (Member # 40540) on :
ALS was put on the short of things that was initially considered when I presented with a host of crazy neuro symptoms (this was two year before figuring out it was Lyme)
Posted by Shiela (Member # 28681) on :
I was originally told that ALS was not out of the question.
I had nine Lyme tests. One of them was a lumbar puncture. The last one, from IGENEX was positive for Lyme. I was in a wheelchair, lost my voice and MANY other neuro symptoms.
The IGENEX test must be read by a Lyme literate doc. Mine was originally read by my neuro who wrote "Negative" across the bottom of the test.
That's because IGENEX reports two ways. One is a CDC conclusion and the other is IGENEX conclusion. The CDC report was negative. The IGENEX report was positive. I took it to a LLND who immediately said that he could tell me with 95% certainty from the test that I had Lyme. Additionally, with the clinical presentation I had, he could further say with 99% certainty that I had Lyme.
One doctor told me, if it's ALS, there isn't anything we can do for you, so let's try what we CAN do for you. I had nothing to lose. I started getting better on abx. Not cured yet, but better. You don't get better with ALS.