Lyme Disease misdiagnosed as ALS

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Lyme is considered a mimic and a test for lyme is often done as part of the diagnostic process. But you probably refer to those who claim that many cases of ALS are Lyme. I believe that a number of people have been misled by socalled Lyme literate practitioners who claim you need a special test from a special lab and ---almost everyone is positive. So you get large amounts of potentially dangerous antibiotics and if you feel worse are told it is because your body is ridding itself of the toxins and if you die it is because you did not get treated in time. There are a lot of people looking to take advantage of desperate PALS and CALS. By all means if there has not been a lyme test ask for one but beware of those claiming special expertise

I have seen neurological lyme a few times and it looked nothing like ALS but it was one of the things my neuro chose to test me for so sometimes it must act more like ALS
 
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My dear friend felt really crummy for about a year with an assortment of ailments, and then her pinky literally stopped working - as in, she couldn't move it at all. After tests, Doctor #1 told her it was most likely ALS. Doctor #2 tested her and said nope - it's lyme disease, and treated her. We all had hope the treatment would work - and she would be cured. We looked forward to the day we'd toast Doctor #2 and talk about how she dodged a horrible scary bullet. This was in early June. The following January my beautiful friend died of ALS.
 
There are some threads about this you can search for with study/review links. I am very sorry for your loss, Blackbird. But, MC, the theory has been tested and never proven in the slightest aspect. There is a whole profitable establishment around Lyme, that masquerades as the "anti-establishment." Very sad.
 
I do not believe that lyme disease is misdiagnosed as ALS. My husband and I tried very hard to believe this and had the total treatment for a year. we were desperate and could not accept the ALS diagnosis.

I agree with the others, it is preying on people who have a horrible and incurable disease. It is not that I don't believe in Lyme disease, but I don't think ALS and Lyme are really anything alike.
 
My wife was stuck on this as well. We had two blood test done and then we insisted on my Spinal Fluid being tested as it is the best way (as far as we could find) to be sure there was no infection.
 
This is what we'll be doing: You can order a kit from Igenex and your doctor can send in your blood for PCR analysis which is accurate. They can also order a culture test which is 97% accurate.

I can't see why not.
 
thanks nikki, as i just got back from clinic i did ask for lyme blood work and it was done so now i won't be fooled into believing that my als is something else. and yes it was just a small mention by a friend that it might be lyme that put the bug in my ear. i guess it's because in the beginning we really don't want to believe. no fault just human! one love chally
 
thanks nikki, as i just got back from clinic i did ask for lyme blood work and it was done so now i won't be fooled into believing that my als is something else. and yes it was just a small mention by a friend that it might be lyme that put the bug in my ear. i guess it's because in the beginning we really don't want to believe. no fault just human! one love chally

thank you. i think you're right.
 
Hi mommychops,
It's very good that you asked about this.
There seems to be an entire industry out there to bilk people with terminal diseases.
You will also see recommendations/services to "detox" PALS of heavy metals, and folks who swear that having mercury fillings removed is the key.
There are at least two "clinics" out there who will "cure" ALS using stem cells. One such is Stem Cell of America which appears to be in California but actually has a clinic in Mexico. One PALS on Facebook has cranked up a GoFundMe site and is asking for donations to fund his treatment.

If any of these 'treatments' actually worked I'm pretty damned sure we'd hear about it.

Beware the snake oil salesmen!
 
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