So tired of living this way...could Lyme be the culprit? Sorry- long read.

That thing on Martz is CRAZY!!

“I wanted to write my book, one, because I realized that there were other people out there who are suffering, and there’s a lot more that we don’t know than we know about this disease and that there are people who don’t fit the classic mold of a bull’s-eye rash and a tick bite and that I’m an example of somebody who is a physician scientist who was dismissed as being stressed when in fact I had a serious, life-threatening infection that almost took my life.”

Wow! Another physician scientist. These stories are remarkable.

JDB - there are so many cases like those two examples...it's sick.

That's why we are so passionate...committed about this. They're not all Dr.'s, but I thought you would relate to the Dr. stories.


And, no we don't think everyone has lyme disease...(although I think my neighbor could - she gets the same deer in her back yard as I do...and she has fibromyalgia...but her symptom list has grown over the years)

Do you realize that fibro list is so long now - muscle pain, joint pain, cognitive issues, sleep issues...and I think now they're considering numbness/tingling of extremities as part of the symptom list...

When I told my neighbor that I had these strange vibrations in my body...she said something like "I have something like that now - that I didn't have before...and my Rheumatologist said it's one of my fibro symptoms"

Do some research. You will find a lot of MD's in Canada were driven out in the mid 2000's from treating lyme. I remember finding their disciplinary hearings online and reading them. You could depict they were treating lyme patients and the Dr's were doing it properly. Sadly they were forced to head state-side I guess. Some of them moved on I guess.

Also, when I hear adds warning that Lyme disease is in my area. And then I go to the resource....

www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/professionals-professionnels/index-eng.php#a4

They basically back the IDSA and CDC the entire way through. They were a lot more flexible on rashes though, glad they opened up to that. Sadly they dismissed private labs as being very unreliable.

Post Edited (Asmoline) : 6/30/2016 8:32:04 PM (GMT-6)

Everything that you had plus a handful of more symptoms....

Yes its lyme ...40 doc later i found it under 1000x microscope in blood ...muscle fascilation i belive is bartonella ...cats claw ,rocephin ,and bee venom and rife has helped with fascilatuins ..

Hi rex, I just wanted to say that this post really hit home with me as I've recently been having the same fears of ALS or some other neuro degenerative disease due to constant muscle cramping and twitching as well as knee pain that all seemed to have started within the last month or so.

However, based on my the nature of my wide variety of on and off symptoms, my young age and the fact that I was bitten by a tick, I know that the chances of Als are slim to none and that lyme disease can and does mimic many ALS symptoms. So given the fact that you're in your 30s and know you've been bitten by ticks, I would say that you're definitely on to something with suspecting lyme and that it's extremely unlikely that you have anything like ALS.

To my knowledge, ALS almost always starts with profound, clinical weakness before the twitching and cramping would start plus that weakness and twitching would start in one hand or foot and then slowly move up that limb until you'd completely lose control over that particular limb. Another good sign with your story is that you've had these symptoms for quite some time without clinical weakness whereas ALS patients almost always end up in a wheelchair within a number of weeks or months. From what I hear, body wide twitching is almost always bfs or lyme. You're story definitely sounds like bfs caused by lyme and co to me, NOT anything truly sinister like Als. I definitely wouldn't worry :)

I know, it's really pathetic how the internet makes it seem like all these extremely rare life threatening diseases like ALS, parkinsons, MSA etc which really only affect a TINY portion of people (almost all over the age of 50) somehow start out with minor symptoms like twitching or "cold hands and feet" when there's literaly hundreds of far more common and benign causes.


I made the mistake of consulting ol Dr Google several times since my symptoms started last year, and anytime I'd go to my pcp, those fears would be put to rest. I remember thinking I had a brain tumor after being severely ill for weeks with dizziness and brain fog, sure enough, CT scan ruled that out.... then I thought it was lung cancer or heart disease because of my severe shortness of breath, blood tests ruled that out... Then I suspected something like parkinsons or MSA since I was having hand tremors with my other symptoms, doctor did a full neuro checkup and said that couldn't possibly be the case. And then just the other week after my twitching started, I had the ALS panic and I'm finally realizing that this simply can't be the case for someone my age (22) who's almost certain lyme disease is the cause of all this.


As for lyme diagnosis, just as others have mentioned, I'd definitely try to test through igenex if you can get insurance to cover it or can pay out of pocket for it. I think it's roughly 60 for either the Elisa or western blot and 200 for both or something like that. I had a negative Elisa through standard CDC testing and sadly, because it's just the way the health care system works, my doctor refused to order a more accurate western blot test since my Elisa was negative. And then when I asked about an igenex test, he just laughed and said "they're scam artists" which seems to be a commonly shared opinion with many doctors for whatever reason.

And on that note, most doctors (especially mine) seem to think that chronic lyme disease simply doesn't exist because they're led to believe that you have to a have the classic bull's eye rash with fever and flu like symptoms right after being bitten for it to be lyme disease. In my case, I was bitten three years ago and never had any symptoms until I caught a nasty cold last year and like you, most of my symptoms are neurological. Twitching, cramping, eye floaters, blurry vision, numbness, creepy crawly sensations, extreme fatigue, migrating pain etc. So if your doctor tries to tell you it's not lyme, I'd definitely try to find a good llmd in your area who can diagnose you clinically and give you a trial of antibiotics.

My thoughts are that if you know you were bitten then developed symptoms, it's highly likely that you indeed have lyme and if that's the case, then with proper treatment and detoxing, you can and will get better!

Anyway, I wish you the best of luck with all of this and I hope my reply was of some help to you. :) I can definitely say that you've come to the right place. Tons of very friendly and helpful folks on this forum