View Full Version : ALS & Lyme

11-12-2010, 12:30 PM
My dad was diagnosed with ALS in Oct. 2004. About a month ago he was given a Western Blot test and tested positive for Lyme Disease. Although they said he could still have both and only time will tell. I found this to be excellent news.

Has anyone had this diagnoses as well? I wonder what the chances are that he could have both? And since theres a test for Lymes and not one for ALS. I find hope in knowing he may get better!

11-12-2010, 12:56 PM
How wonderful that your dad has this hope! The Lyme and ALS debate is always raging. If you did a search (see above in the blue bar), or looked at the threads listed at the bottom of this page, you should find more information. My best wishes for your dad to have only Lyme and to recover!

11-12-2010, 10:00 PM
I'm in the same boat as your Dad. I was diagnosed with ALS in March. I never tested positive for lyme but have all the clinical symptoms so my llmd started me on ceftriaxone. It is an iv antibiotic, which is also being tested for ALS. I feel so much better, my energy is back to about 70% and I'm walking 2 miles a day no problem.

I still have atrophy in my arms but I'm hoping that will improve with PT. Lyme has many strains and usually comes with coinfections that need to be treated separately. It can take years to really get better but the hope that I only have Lyme keeps me going. I've never been one to avoid reality but I just can't accept that I have ALS. I just turned 50 and am the mother of a wonderful 14yr old son, I don't intend to leave him so soon!

There is a theory that ALS is a manifestation of untreated Lyme. Many will dispute that but I believe it. Some people do improve with antibiotics so what's the harm in trying? If you want to learn more about lyme, try lymenet.org, its a great website. Good luck to your dad, let us know how he's doing.

11-13-2010, 04:58 AM
There is a theory that ALS is a manifestation of untreated Lyme. Many will dispute that but I believe it. Some people do improve with antibiotics so what's the harm in trying? If you want to learn more about lyme, try lymenet.org, its a great website. Good luck to your dad, let us know how he's doing.

I don't dispute it. Sounds pretty logical to me.

11-25-2010, 08:49 AM
There is no official evidence that supports it but hey I believe it...This year alone where I live I've met 3 other people that were diagnosed with ALS but then got a western blot and had Lyme's disease. I got mononeuritis multiplex with Possible ALS in my differentials and tested positive for Lyme via LabCorp and Quest for 2 years and positive CD57 by LabCorp.

There should be more research in the connection. I got lymes while serving in the Army I just think about the other soldiers I've served with and picked ticks off of and I wonder if any of them have gotten sick as well. I know my battle buddy at boot camp got Lyme's as well. If theres a connection we all need to know about it.

11-26-2010, 10:05 AM
Easy to see why some people who have ALS think maybe they have Lyme disease and viceversa when you see this...many similar symptoms>>>

Lyme Disease Symptoms (Partial List - there are many other possible symptoms)

1. Unexplained fevers, sweats, chills, or flushing
2. Flu-like symptoms or malaise
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen or painful glands/lymph nodes
6. Sore throat
7. Headache
8. Rash - either bulls-eye or other forms. Can vary in form, color, and number, and appear in areas other than tick bite. Less than 50% of confirmed Lyme cases report remembering a rash. A bulls-eye rash from a tick bite is DIAGNOSTIC for Lyme Disease.
9. Irritable bladder or bladder dysfunction; Interstitial Cystitis
10. Upset stomach, GERD, or acid reflux
11. Change in bowel function - constipation, diarrhea
12. "Sick all the time" - seem to catch every illness that comes around, or old infections seem to resurface (e.g. Eppstein Barr)
13. Disturbed sleep - too much, too little, early awakening
14. Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis, Bell's Palsy)
15. Lightheadedness, wooziness, syncope (fainting or near-fainting)
16. Increased motion sickness, vertigo, poor balance, or change in gait
17. Pain, stiffness, and/or swelling of the joints, neck, or back, traveling or localized
18. Tendon and ligament pain or stiffness
19. Neck creeks and cracks, neck stiffness, neck pain
20. Muscle pain or cramps, traveling or localized
21. Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity, loss of hearing
22. Jaw pain or stiffness
23. Twitching or tics of the face or other muscles
24. Tingling, numbness, burning or stabbing sensations, shooting pains; areas of skin sore to the slightest touch; sensations of hot or cold
25. Muscle spasms; limb or head jerks
26. Difficulty swallowing, tight throat
27. Tremor
28. Eyes/Vision: double, blurry, increased floaters, light sensitivity, pain, uveitis
29. Heart palpitations, chest pain, pulse skips, heart block, heart murmur, or valve prolapse
30. Shortness of breath, air hunger, cough, painful lungs
31. Chest pain or rib soreness, costochondritis
32. Mood swings, irritability, depression, bipolar disorder
33. Unexplained menstrual irregularity or increased PMS symptoms
34. Unexplained milk production, breast pain
35. Sexual dysfunction or loss of libido
36. Testicular pain/pelvic pain
37. Unexplained weight change - loss or gain
38. Confusion, difficulty in thinking
39. Difficulty with concentration, reading
40. Forgetfulness, poor short term memory
41. Disorientation: getting lost, going to wrong places
42. Difficulty with speech or writing, difficulty with word-finding
43. Exaggerated symptoms or worse hangover from alcohol
44. New food sensitivities or allergies
45. Postural Orthostatic Tachycardia Syndrome (POTS)
46. Neurally-Mediated Hypotension (NMH)

Symptoms that can be found in disseminated Lyme Disease (called Disseminated late-stage Lyme Disease, or Neuroborreliosis) can generally appear anywhere from several days after infection, to many years later:

47. Seizures
48. Autism, ADHD, OCD
49. MS-like Lesions in brain and/or spinal cord on MRI
50. Paralysis
51. Dementia
52. Psychosis
53. Auditory and visual hallucinations

Lyme symptoms are systemic, or multi-systemic. Lyme can sometimes be the cause of, or cause sets of symptoms that can be misdiagnosed as:

Fibromyalgia (FMS)
Chronic Fatigue Syndrome (CFS)
Rheumatoid Arthritis (RA)
Multiple Sclerosis (MS)
Reynaud's Syndrome
Amyotrophic Lateral Sclerosis (ALS)
IBS (Irritable Bowel Syndrome)
Ulcerative Colitis
Chron's Disease
and many, many others.

11-26-2010, 07:23 PM
Yep all that sums up my daily life lol! If you include learning disability and development of dyslexia my picture is complete. The dyslexia only started a few months ago. I think I am writing perfect but my instructors def do not believe I am not dyslexic. strange disease to say the least.