Opinions that ALS is a form of Lyme?

[Labinma]

Ok back. Could I get people's opinion about the theory that ALS in some cases is Lyme ? So far I've gathered my Pals is on a slightly slower progression. Could this be a cruel mimic of ALS and in fact this is Lyme? Head nuerologist has dismissed Lyme and tests were conducted.

 

[tripete]

I had two different Lyme blood test and spinal fluid drawn to test for Lyme and all other infections. It is important to get at least two opinions for your ALS diagnosis from ALS specialist and for you to insist that every other possibility be ruled out. One of the good doctors told me that the patient and there loved one MUST be their own best advocate.

 

[Vincent]

As far as I see it, Lyme disease is the latest thing the holistic community has latched on to to suck money out of people's pockets. If you present with a whole lot of non specific symptoms and are tired they jump to lyme. The thing before that was stem cells. Who knows what the next unprovable expensive to treat disease will be next. The doctors and researchers ARE in fact looking very hard for a treatment, or if possible a cure. Until this is found there will be people looking to make big bucks on desperate people. Save your money for a nice trip.
Vincent

 

[GregK]

There are no end of charlatans who would convince you that it's Lyme disease.

 

[Lkaibel]

I have a friend who spent two years in recovery from chronic Lyme, but reputable Doctors know that ALS in not Lyme. I agree with Greg, it's trash medicine by fakers.

 

[affected]

My 2 cents

With some ALS onset types, in the early stages when you are just knowing something is wrong and starting to think about seeing a doctor, this disease and lyme can resemble each other.

But only in the early stages - the way ALS progresses, and the clinical and measurable progression are not the same as lyme.

So I think lyme is very much worth investigating as part of the myriad of tests done to rule everything else out. But no, IMHO ALS is not a 'form of lyme', they are very different things.

 

[lgelb]

I understand your need for hope, but studies have suggested no greater prevalence of Lyme in PALS vs. the general pop, and having had Lyme myself 2 yrs before my husband was dx'd with ALS, I can say there's a considerable (and fairly unmistakeable) difference.

That is, as others have noted, a junk science feeding ground and not something I would spend limited time, money and emotional investment on. Worse than ALS itself would be spending the time remaining in trying to escape or deny it, instead of sucking the juice out of the life and love that is left.

Best,
Laurie

 

[ehd42]

Hi As Laurie pointed out PALS have no greater incidence of lyme’s disease than the general population. Furthermore, there is no credible scientific evidence that lyme’s disease plays any role in causing ALS or has a predilection for motor neurons. Although Lyme’s disease can cause neurologic symptoms, these symptoms will not support all the criteria required for a diagnose ALS. If you're concerned about the accuracy of your diagnosis get a second opinion or third opinion at an ALS Center. If you're still concerned, consult an infectious disease expert at the University hospital that has no ties to a private clinic that appears to promote Lyme's disease treatment as a for-profit business.

Best wishes

Eliot

 

[Labinma]

Thank you alll....pursued the question as my PALS still searching For a rational answer as to what is happening to him exactly. Albeit, two reputable one a Chief neurologist at a Boston hospital have both ruled out Lyme and believe it to be ALS. Acceptance and resolve must be a major step in the journey of living with ALS.....

 

[Dave K]

This is how the Lyme scam operates. The patient hears from friends or relatives that it "sounds like Lyme disease," that there is a conspiracy among the medical establishment to under-diagnose Lyme, and that they know some one who was "cured" after being treated for Lyme. The charlatans selling the hugely expensive Lyme treatment send the patient to a lab that gives positive Lyme results for all of its patients, and then they sell you useless treatments until you run out of money or die. These people are the scum of the earth, preying on the super vulnerable for profit. When they target people with the Yuppie Flu, no one cares very much, but when they target ALS patients, they should be locked away. The best way to avoid the scam is to get a Lyme test done at a reputable lab.

 

[Inventor]

Italy has 30 times more cases of Lyme than Ireland, yet the same number of ALS cases. IIRC, Hawaii has no Lyme disease but still the same number of ALS cases. Not to mention the genetic aspect of ALS.