Lyme positive....but do I possibly have ALS too?

[Scott67]

First post, since I just found this site.
I'm really worried that I might have ALS with all the symptoms I have been experiencing for well over 5 years now.
This past December (2016), I found out that I was positive for Lyme's after numerous tests were conducted by my Neuro. and my primary care Dr.
I'm a WM, almost 50 yrs. old (next week).
Tests I have had include: MRI of brain (which indicates a cerebral spinal fluid leak), 2 separate EMG's & NCV's, chest X-rays, lots of blood/urine labwork, a Lumbar puncture and a couple visits to the ER with chest pains and shortness of breath generally, the reason....but I went to the ER 2 weeks ago with a high fever and found out I had the flu....which exacerbated my symptoms somewhat.
My history:
Lived in known Lyme-infested areas of the US where ticks carrying the bacteria are known to be present. (Maryland and Wisconsin).
I have NO idea when I may have contracted Lyme's from any tick bite since I have not lived, or visited in either place in many, many years.
I WAS diagnosed with Epstein-Barr though....at age 10 (living in Maryland).
I also have worked on MANY different golf courses around the US, off and on.....for about a 20 year period. I was constantly exposed to and/or applying.....fertilizers, pesticides and insecticides while employed as a grounds maintenance worker.
I have also had a few head injuries (concussions) and one serious head injury from a rollover car crash, which scalped me and caused a hairline fracture of my skull (1989). I was out cold for a couple days after that.
30 years of cigarettes.
20 years of heavy drinking, but.........(COMPLETE ABSTINENCE from alcohol since 2008
ALL tests came back negative for West Nile, MS, etc. :-D
NO vitamin deficiencies found.
HIGH HDL cholesterol
High blood pressure.....(on Losartan for this)
Liver, kidney, electrolytes....all good. :mrgreen:
NOW.....My first symptom I noticed was a strong desire to clench my teeth, during the day (while awake)....NOT while asleep.
This was mid-2011.
My Dr. then....attributed this to stress/anxiety but I told him that I didn't feel anymore stressed than usual, or anytime before, so I thought he might be wrong about this.
Soon after.....I began having occasional twitches in my arms, face, head, legs. Over the next several months, these twitches became far more intense, all over and CONSTANT, with my right arm affected the most.
2012-2016......The muscle twitches continued and were (still are)....mostly....VERY ANNOYING!
"Wormlike" movement under the skin and right side top of my head.
But...when my muscles lock up/cramp.....then it hurts, but this usually lasts for a brief period, or until I finally go to sleep.
My right arm has taken the worst beating from this.....followed by my left arm and then....my legs.
NOW....they are VERY weak and my legs constantly feel like I just ran in a marathon. Staircases = OMG! Mt. Everest!!
Fell down our staircase only once so far....about a year ago.
I find myself tripping over my feet in a flat parking lot now.
EXTREME muscle contracting/fasciculations in both arms with a HEAVY, PULSATING, "high-tension wire...ELECTRICITY" feelings extending down from biceps/triceps...into forearms and my hands!
My handwriting is really getting sloppy as my hand HURTS to write much and my arms/legs aoften feel like they are weighed down with lead.
I've lost about 20lbs. and just don't want to eat very much or often.
Still love food though and I have not lost much cognitive ability, other than it is increasingly difficult to come up with the right words when I speak.
Occasional slurring but no other issues with tongue, but voice is raspy and getting worse, I think.
Brushing teeth is exhausting on my right arm and lifting more than about 5lbs. takes a LOT of effort these days.
I have noticed a lot of involuntary movement of my fingers mostly....with occasional jerks of my arms and legs. Much of this is sudden....but, ongoing for over 5 years now.
Sometimes......SUDDEN, intense, full, body jerks while asleep. My wife has noticed this many times, apparently.
Also....A LOT more shortness of breath with increasing difficulty swallowing liquids without them going down the wrong tube.
As soon as I wake up in the morning, I feel as though there is a heavy hand pushing me back down and my legs are so weak and wobbly.
I have definitely noticed a steady, gradual progression of ALL these symptoms since late 2011 with occasional periods of alleviation (when it seems the deteriorating progression.....seems to stop for a few weeks or so). But then......WHAM!
MANY times I find myself trying to alleviate my pulsating, achey muscles in my arms and fingers by tightly wrapping ACE bandages around all my fingers (to restrain them from twitching/moving on their own), my hands and often up to my shoulders.
Right arm gets the worst of the punishment, but left arm and legs, hands feet....ALL getting twisted out of shape with these constant, throbbing, pulsating cramps.
I need to quit getting my hopes up that whatever this is.....will just go away and let me live again!
I WAS VERY active!
I skied, played golf, hiked, etc.
I LOVED the outdoors and being active....GO, GO, GO.
NOT anymore.
I'm miserable and depressed....but ALWAYS trying to stay positive and not lose my sense of humor, even though I truly believe that whatever this all is......it's going to do me in sooner than later.
Untreated Lyme's?
My Dr. tried me on 200 mg/day of Doxycycline in an attempt to fight off the bacteria, but I felt sicker after 10 days of taking it and she told me to stop taking it worried about some Herxheimer reaction thing?
Besides, I believe you may need more like 600 mg/day to benefit from antibiotic therapy, as well as IV-admin. antibiotics for several weeks or ?
Baclofen did NOT alleviate my spasms, BTW.
Valium did though.
NOT on any meds for treating any of this now and continue to deteriorate a bit more each day.
Sorry for such a long post but I am desperate to figure out what this really is.
Just Lyme's going untreated and causing all this.........OR, could this actually be a "transition" into something more?
ALS, perhaps?
Appreciate any feedback.

 

[lgelb]

Hi, Scott,
ALS doesn't hang out for 5y as you describe. And a clean EMG says not so.

It seems much more likely that your Lyme was undiagnosed and causing these symptoms and/or your brain injuries have caused long-term damage (not always seen on MRI) and/or you have had some toxic exposure whose effects have manifested over the last several years. And that could include damage from long-term heavy drinking, but that doesn't seem like the full story.

Stay off the "LLMD" and "anti-Establishment" Lyme sites that suggest megadosing antibiotics, Rife machines and other expensive treatments (in time, money and health). There is no science behind any of it and its sole purpose is to line the pockets of a shady group.

Whatever the possibilities, losing 20 lb and your interest in physical activity suggests continuing with an internist till systemic disease is ruled out. But you can't do that here or on any Web site.

From what you describe, your current team isn't doing much for you, so I would consider an evaluation at an academic medical center for your own peace of mind.

Best,
Laurie

 

[Atsugi]

There's no ALS in your post, Scott.

 

[Scott67]

There's no ALS in your post, Scott.

________________________
--Mike


ALS, perhaps?
Appreciate any feedback.

 

[starente15]

ALS, perhaps?
Not based on what you've describe in great length, at least according to folks who know ALS but aren't physicians.

 

[Dobekane]

I am in a similar place but with different symptoms. Ditto your work history and lyme exposure. Ditto the tests too, but only one found lymes. I have an official ALS diagnosis but I don't think they even know what ALS is. I have been fighting for two years and am at the tipping of hope and acceptance. Fight if you have a chance.

 

[Scott67]

I really don't think I have ALS either.
And I only tested positive for Lyme's on 2 out of about 7 "bands."
This was a Western Blot result.
Two other tests for Lyme's (ELISA)?.......showed NO positive results at all.

All I know so far is that whatever it is I have been suffering from for over 5 years......DOES have periods of what I would say, is NO progression and often I feel as though it might just go away, eventually.
But, every time I feel that much better.....(like I do at the moment), I always end up realizing that its just wishful thinking and soon enough, I will be struck down again, debilitated for days, weeks, months perhaps.....until the next time I see some relief.....or lack of further progression.
I also know there are many types of neuromuscular disorders, autoimmune diseases that can lurk for years (like the Lyme bacteria), which is apparently a very nasty spirochete that "hides" very well.
Would it seem plausible for me to try oral antibiotic therapy with high doses, IV-administered antibiotics?
I also fear a bad reaction if I go this road (Herxheimer), and I may expedite the worsening of my condition.
I tried Doxycycline....but only for about 10 days and only 200 mg/day which I believe is not nearly enough of a dosage to do any good.
I think you need more like 600mg/day of this.....and possibly, other antibiotics, for a lengthy period of time.....to be somewhat effective.
Either way, I wish I could get an accurate diagnosis.
I have been trying for about 2 years now!

So far, I have been told it could be anything from:
ALS.......(possible)
Lyme disease (positive on Western Blot)

But other Neuro's have thought it might be these:

Chronic Inflammatory Demyelinating Polyneuropathy
Polyneuropathy
Benign Facsiculation Syndrome
Multifocal Motor Neuropathy

Any good guess would suffice for me at this point, because I am sick of what seems to be runarounds from several Drs. who wish to kick the can down the road more often than not.....and I need to find out if this ongoing health problem will qualify me for some form of Disability :?

 

[lgelb]

Again, do not go the high-dose antibiotic route, which will only make you weaker and create new problems. There is no science behind it, only for-profit quacksters. I've read the "literature."

Your focus should be to find out if you have a treatable neuromuscular disorder, before you consider benefits. I don't know what centers you've been to, or how you have not been diagnosed, but with two EMGs and a CSF analysis, you should be close.

With only 2 bands (IgM or IgG?) positive, Lyme is probably not the answer.

 

[Scott67]

Well, if it isn't likely to be Lyme's I am suffering from then I have no clue what it might be.
I believe that there is "something" vascular about my condition, as I continue to notice a constant pulsating sensation ripping through my main nerves of the arms esp.
These sensations branch out in the middle of the palms of my hands and often cause my fingers to move involuntarily and also cause a lot of pain (cramping) in my hands.
These cramps and muscle twitches also affect the forearm muscles, biceps and triceps in a major way, but generally do NOT hurt, just ANNOY the hell out of me.....until they lock suddenly.
The main, pulsating sensation is often localized at any given moment to....say, the bicep in my right arm. I feel the need to constrict or/then stretch the affected area....and this often will result in a sudden, intense ringing in my ears, sudden chest pains (once in a while), or sudden headaches at the base of my skull.
This sensation can move around at will and affect one area worse than the rest (limbs), or affect both arms or legs at the same time, equally debilitating.
ACE BANDAGES..........I use to "restrain" or "constrict" twitching, pulsating, cramping muscles in my arms or legs or feet or hands....is nearly a daily thing. RESTRAIN involuntary finger movement and flailing arms/legs. It can feel like a mild earthquake inside with constant tremors too.
I don't think it helps much, but it does seem to provide some sort of temporary relief as long as I don't cut off blood circulation for too long or too much.

It definitely seems to be gradually progressive and causes extreme weakness in my arms and legs causing increasing difficulty walking, without tripping over one of my feet.

I was also prescribed Gabapentin for this and after about a week, I suffered one helluva reaction that had my arms and legs flailing out of control!
Baclofen.......NO help either.
Amytriptyline......for excess saliva which really dried out my mouth, but I still occasionally choke when drinking liquids and sometimes I seem to have more difficulty breathing after little or no exertion.
THIS is unusual and noticably different than previous asthma-related breathing issues.
No longer on any of these medications and I WILL take your advice and NOT attempt high doses of any anti-biotics.
Whatever it is, I believe is here to wreck the rest of my days and expedite my demise.
At this point, I am caring less and less to go to any more doctors, or care to find out what EXACTLY it is.
Patients KNOW their own bodies far better than any doctor they visit with and guessing games don't cut it after nearly 2 years of tests and nearly 5 years of attempting to diagnose!
It's all BS at this point and I just KNOW this illness is here to end me.
I'm OK with it, I guess. :x