2 slightly abnormal EMGS Weight loss-40 lbs-was 210 now 170 Significant weakness-pretty much everywhere Slow speech Ringing ears Numbness/tingling-hands, feet, and an area on my back about 7" in diameter Trouble walking and getting up when sitting down Major balance problems Fingers want to curl
I tested positive thru Igenex on both IgG & IgM Western blots, but was diagnosed with ALS about 8 months prior to lyme testing. I have been on Biaxin 1000mg per day and IV Rocephin for about 3 months with very little improvement and am sometimes questioning my lyme diagnosis.
Thanks dsiple
I forgot to add widespread muscle twitching 24/7, sensitivity to light, cold hands & feet. No cramps which is a good sign in favor of lyme.
dsiple
Posts: 18 | From Punxsutawney, PA | Registered: Sep 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
Numbness and tingling are not ALS symptoms nor is ringing in the ears. What did your neurologist have to say about those symptoms?
Lyme disease can mimic ALS and being that you have positive WB's you probably have it. Chances of you having both is very remote.
3 months is not a long time given the severity of your symptoms. How long have you been symptomatic prior to the start of antibiotics?
Are you seeing an LLMD? Many people respond differently to different antibiotics, perhaps you are not on the right combination yet. You also could be co-infected with other bacteria.
[This message has been edited by Mathias (edited 25 April 2005).]
posted
Hi d! It can take a long time for improvement to show. Are you herxing on the abx??
Here's a Lyme symptoms list: 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Looks like you have several positives there as well as a positive test. Keep treating the Lyme!
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Abnormal EMG's can be caused by many conditions incluing lyme disease and other infection that effect the CNS.
Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
I did in fact herx for about 3 days after about 4 or 5 days of IV treatment. I definitely feel better than I did 6 months ago, but I am a bit impatient.
Symptom wise, it all started in Oct 2003, but had chronic sinus problems since 2001.
Thanks for the advice and support. dsiple
Posts: 18 | From Punxsutawney, PA | Registered: Sep 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hi dsiple treatment and improvement and herx's can take a while and the the right abx's. Anyway make sure you read the info below. Newbies List
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
A copy of this is stored in computer Help section.
Updated 04/22/2005
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I never had abnormal EMGs or ringing in the ears, but other than that your symptoms are almost the same as mine.
Lyme Disease is deeply imbedded in my nervous system my LLMD told me. I would suspect the same is true for you.
Conservatively I have LD for 17 years. Have had treatment (obviously not the right kind) since 1997.
So, don't be impatient. It takes a while to get rid of the LD especially when it has made the CNS its home.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
When I started treatment, I told myself I'd give it a year and see what happens. At about 6 months I started doubting, at about 7 months I suddenly improved. I'm not cured, but I'm much better than it was.
I don't know much about ALS, but I do believe it progresses quickly. Have you remained about the same, or has your condition progressed over the last 3 months?
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I definitely have Lyme and have or had many of your symptoms.
The most persistent is the tingling in my hands, feet and an area of my back. After about 8 months of treatment the tingling and numbness has moved to a different part of my back.
My balance problems are greatly improved. For a while it was hard to get up or change from whatever position any part of me was in.
I had cold hands and feet but now in my 9th month of treatment they have warmed up.
Constant ear pain and thumping in my ears was my first symptom. I get ringing occaisionally. This symptom is infrequent now.
My significant weakness started to make real improvement in my 7th month of treatment. The improvement was so dramatic I was even able to go skiing!
My speach was slowed but is back to normal.
I have had issues with my fingers curling. This goes back many years. I'm currently investigating whether I had Lyme previously and suspect it goes way back.
My LLMD says it often takes 4 months to see improvement with a new drug.
I don't know anything about ALS but it sure does sound like you have Lyme. Many people here have been diagnosed with all sorts of things before finally being correctly diagnosed with Lyme.
Be patient with treatment and read up here about all the things that help in addition to antibiotics. I have gotten great relief from the anti yeast diet, probiotics (primal defense) epsom salt baths and podi-patches.
Posts: 1 | From US | Registered: Aug 2015
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Who in the world said abnormal EMGS and non response to abx is voting against lyme?
Abnormal EMGS are COMMON with lyme as is commonly affects the nervous system ( duh) and a non response to abx could mean plenty of things:
Wrong abx wrong penetration of abx COINFECTIONS
and much more.
To answer the post:
Im glad that you are on abx, its a slow ride. Please hang in there! It takes a long time, I know and very impatient time at that, but you WILL get there.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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oops! 
It takes a while to get rid of the LD especially when it has made the CNS its home.
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