ALS Diagnosis 12 years ago

[vzandt]

Our doctors did not diagnose lyme....I think we have to listen to them. My husband was tested three times.not lyme.

 

[momofsixkids60]

I was never tested for lymes disease.

 

[notme]

I apologise for the text being clustered together and also for the poor quality of the translation. If you want to read cut and paste and do what you like with it. Or just ignore it no problem for me.

I merely thought you might like to hear someone diagnosed with ALS by the Norwegian health care system 12 years ago. Who is still able to stand and does not need a respirator - something quite unheard of in ALS patients.

His treatment was long term antibiotics because he was diagnosed and treated for Lyme Disease.

The Norwegian Health authorities do not accept he has Lyme Disease he tries to explain the inadequacies in Lyme Disease testing which is well documented in every country being that they are antibody tests developed on only one strain B31 which is not even found in nature when there are in fact hundreds of different strains as well as several species here in Europe.

Difficulties reading script is a common problem for Lyme patients too a simple cut and paste and change of spacing, size and font is useful. I have no desire to follow this forum and learn the intrecasies of posting here.

Those who seek answers can do their own research there are several cases around the World who found their ALS/MND to be Lyme and the controversies over testing, diagnosis and treatment of Lyme Disease is an International medical disgrace because it leaves thousands of patients without early diagnosis and adequate treatment.

Quite obviously you have nomdesiremto make things a bit easier on those that have difficulties.

For you, perhaps, it might be a simple mattermtomcut and paste and separate.ctey doing so with an eye tracker attached to a pair of glasses or typing with one finger.

If your goal is to truly help PALS you feel may be misdiagnosed, a bit more courtesy in your presentation would go a long way.

My comment was meant solely to make you aware that your first post was nearly impossible to read.

Is there something you're trying to sell here? Some LL doctor you work for?

Sorry, I'm not one who buys into the whole Lyme bit of months and months of harmful antibiotics that will cause me more harm than good. My immune system is bad enough. I need my antibiotics to work when and if I need them down the road, as do PALS should they develop infections such as pneumonias or hospital borne infections...not to mention the thousands in $ to pay for them.

While you are reading up on Lyme, read up a vit on antibiotics, and why they are not as routinely given any longer. Noreen and more conditions are becoming resistant. Even common germs are becoming resistant due to p,aim old hand samitizers sold everywhere.

We are creating super-bugs we can't kill, and it will only get worse.

My final comment is this: there is NO proof anywhere that one confirmed case of ALS has been cured by ANYTHING.Vif you know otherwise, please provide the journal article link from an approved medical journal.

Have a good day.

 

[notme]

Most with Lyme had a visible bull'eye rash after a tick bite, though the Lyme obsessed will say otherwise. Not everyone gets the rash, but most do.

They also find a tick on themselves, and at the very least have flu-like issues shortly after the bite.

Certain people that live in high risk areas or have jobs where they are in tick infested areas for the majority of the time have more cause for concern.

I can find you a dozen articles saying its spread by Mosquitos, too. It's not. It's rare within city settings.

I had ticks on me all the time as a kid where I grew up. Lived on a huge farm with tons of 'em. Had lots of rashes. Am pretty sure I don't need to run out to be checked for Lyme. It was over 30 years ago.

My personal opinion is this LL stuff is a cash-cow taking advantage of people. You'll note official stats vary widely from CDC and LL places.

There is an interesting article in the NYT I posted a link to several months ago regarding one of the labs being investigated by the govt. for their practices. Be wary, is all I would suggest.

 

[John1]

...I merely thought you might like to hear someone diagnosed with ALS by the Norwegian health care system 12 years ago. Who is still able to stand and does not need a respirator - something quite unheard of in ALS patients...

I was diagnosed with ALS 12 years ago and am UMN dominant. I am still able to stand and don't need a respirator. Progression rates vary. No need to invoke Lyme.

 

[lymewar]

Grateful

You are wrong! When borrelia attacks motor neurons and destroys them ,its irreversible. You can not treat these damages with antibiotics and believe you will recover after end treatment! So if you use the argument to expect to be cured after antibiotics, you are wrong!
In my case the progression of this disease stopped after antibiotics! IMO als is a group of diseases! I believe one of these is lyme! Therefore somebody gets cured, somebody not and somebody like me!