oops! Lymetutu
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
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).]
You might want to have your thyroid checked--thyroid disease is common in people with lyme disease.
Be sure and have your t3, t4 and tsh checked.
I lost rapid weight and was hyper--then began and couldn't lose. Wasn't a problem until I had babies.
I also had ld the whole time. Someone will be along shortly and give you a whole newbie list of sites to read.
L
The rest of your symptoms may be a good fit for LD.
Some of you symptoms looks like Lyme toxin accumulation. Why don't you try cholestiramine treatment for a few weeks to see if you improve.
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!
------------------
oops!
Lymetutu
Symptom wise, it all started in Oct 2003, but had chronic sinus problems since 2001.
Thanks for the advice and support.
dsiple
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
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- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )
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Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
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More Tick Disease Tularemia Mycoplasmal Infections Alzheimer's ALS Lida M Lupus Lyme Lyme Misdiagnosed as other disease's Garlic Proper way to eat it Check Diet Link Atkins Diet PORT-A-CATH (catherter) Transmission Lyme Sexually Transmitted ??? Legal Help MatthewGoss Site Killing Lymphocytes By Spirochetes Support SupportGroups Canada Part1 Long over Due Updated in a Nutshell Canlyme MAG Help Free Blood Donor Info Dirty Truth Scans & How they Work How UltraSound Works Interested in what Trolls are? 2. Remember This Updated 04/22/2005 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. 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?
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. Hang in there, wishing you the best- Here is a link about ALS and lyme misdiagnosis with medical links from NIH from the 300 OTHER illnesses mimic lyme disease: Bettyg, Iowa
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 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.
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A copy of this is stored in computer Help section.
Posted by Monica (Member # 224) on :
I never had abnormal EMGs or ringing in the ears, but other than that your symptoms are almost the same as mine.
It takes a while to get rid of the LD especially when it has made the CNS its home.
Posted by Aniek (Member # 5374) on :
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.
Posted by hatsnscarfs (Member # 6562) on :
I definitely have Lyme and have or had many of your symptoms.
hatsnscarfs
Posted by bg (Member # 46416) on :
I'm not a dr., but it sounds like you have an overactive thyroid, hyperthyroid, like my husband. I'm underactive, hypo.
http://www.geocities.com/lymeart3/als-links.html
Posted by TheCrimeOfLyme (Member # 4019) on :
Who in the world said abnormal EMGS and non response to abx is voting against lyme?
wrong penetration of abx
COINFECTIONS