I'm trying to find out if there are certain symptoms that are inherently more stubborn than others.
Off all the symptoms I have (mostly neuro) the most persistent ones have been numbness and dizzyness.
Other symptoms, such as foggyness, headaches, ringing, muscle pains, hort term memory loss, etc will come and go on a daily basis.
But the dizzyness and numbness are there EVERY day since I started treatment for Lyme 6 months ago.
What are your most stubborn symptoms and how long do they last?
I'm also curious of those who report stubborn joint/muscle related symptoms suffer mostly from arthritic/FM Lyme while those who report stubborn neuro related symptoms suffer mostly from neuro Lyme?
As for myself, I'm a neuro Lymie.
Michael
[This message has been edited by cmichaelo (edited 10 January 2005).]
Posted by sarabear (Member # 6530) on :
MY most stubborn symptoms also include dizziness/light-headedness, IBS, and mainly vision disturbances. I don't know how long they are going to last but they are not off and on; they are all day every day. The vision combined with the dizziness really is a doozy. Wish I had some solutions...
Sara
Posted by charlie (Member # 25) on :
You ought to see my knees and one elbow( they don't hurt but I think the damage is permanent)
worst one is burning feet. It's been years and it sloooooowly is going away. Now I can ignore it most of the time and it doesn't bother me much.
Charlie
Posted by kam (Member # 3410) on :
I have had the ringing in the ears or high pitch sound for years off and on.
The last 3 years, it has been the weakness. I have great difficulty holding my body upright, sitting upright, breathing, bending over to pick something up, getting dressed, etc.
It comes and goes but mostly stays.
Multitasking and multimovement has also been a major problem the past 3 years.
From the 80's until now, I noticed that stress made the symptoms worse or the symptoms caused stress. Now, I know it is stress that make the symptoms worse.
[This message has been edited by kam (edited 10 January 2005).]
Posted by firsttwin (Member # 5529) on :
Hello everyone,
My longest and worst symptoms are the pain and burning in the knees and feet. Next is the muscle pain. I was told it would get better. I am trying to be optimistic. It has been a struggle but I am still hanging in there.
I thank God for the present that I got on Christmas. It was the best I had felt in a very long time. So I guess there is some hope.
Maria
Posted by Loribelle (Member # 6293) on :
by far that would be connective tissue damage.
Posted by Barrie (Member # 1796) on :
I would say that my daughters longest lasting symptom is ankle pain. That was her first symptom, years before she was diagnosed but, after the tick/bulls eye rash. And whenever she has a set back, it is the first thing to come back.
Posted by TheCrimeOfLyme (Member # 4019) on :
orthostatic hypotension
( ofw hich includes dizzyiness, vertigo, head shoulder neck pain and pressure and many more symtpoms)
Posted by virginia/anez (Member # 6450) on :
cmiachaelo, The same symptoms as you (neuro ones) My arthritis dissappeared more than a year a go.
Posted by daniella (Member # 6753) on :
definately arthritis, drgenerative.....
Posted by cmichaelo (Member # 5873) on :
I'm curious of those who report stubborn joint/muscle related symptoms suffer mostly from arthritic/FM Lyme while those who report stubborn neuro related symptoms suffer mostly from neuro Lyme?
As for myself, I'm a neuro Lymie.
Michael
[This message has been edited by cmichaelo (edited 10 January 2005).]
Posted by Aniek (Member # 5374) on :
Joint problems, particularly the knee. It's not officially arthritis, in that I have no signs of arthritis.
About 18 months after the bit and rash, my knee became swollen and was a problem on and off throughout my adolescence. It became less of a problem, but 16 years later, I am still somewhat limited in my use of the knee.
I only started Lyme treatment 8 months ago though.
Posted by riversinger (Member # 4851) on :
Head and neck pain has been the most stubborn, from my very first symptoms 11 years ago to now.
My longest-lasting symptom is the tension and pain in neck and head, caused by sitting. When I sit, or prop my head up in bed, the symptoms all over my body get worse. My feet begin to burn. My body tingles and I feel like I'm getting numb all over.
Posted by pab (Member # 904) on :
Both of my kids have a constant, unrelenting headache.
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Posted by DawnE (Member # 3155) on :
Hi Michael, I am a neuro Lymie too. Most of my pain has gone. My remaining symptoms after 6 years so far have been insomnia, tinnitus, mental confusion and elevated heart rate. All these would go away after IV Rocephen only to return again so I have given up with the IV abx. How many times can I endure a PICC line anyway.
Best wishes to all,
DawnE
Posted by DawnE (Member # 3155) on :
Hi Michael, I am a neuro Lymie too. Most of my pain has gone. My remaining symptoms after 6 years so far have been insomnia, tinnitus, mental confusion and elevated heart rate. All these would go away after IV Rocephen only to return again so I have given up with the IV abx. How many times can I endure a PICC line anyway.
Best wishes to all,
DawnE
Posted by lymiecanuck on :
Hi,
Most prominent symptoms are nerve pain, tingling, and gi trouble, where my nerves are affected there too. Burning as been huge but eases off.
Lymiecanuck
Posted by BJG (Member # 4723) on :
Hey Raskilnokov,
Please email me. Many of our symptoms are similar. Peace. BJG UIMUMOM @aol.com
Posted by BJG (Member # 4723) on :
Skin Burning, all over. BJG
Posted by krazykt1 (Member # 3739) on :
Dizziness/vertigo since '84 vision, gait problems since '97
Posted by NCLymie (Member # 6689) on :
Fatigue, GI problems and depression. Pain went away after 14 months of antibiotics. Off the antibiotics as doctor said I was "toxic".
Posted by henson2 (Member # 463) on :
Sharp chest pain, nerve pain, lowgrade fever.
Interesting question!
Sending wellness thoughts to all.
Posted by Alexbabets on :
Had muscle pain, and other minor symptoms for over 20 years. Four years ago the ringing in the ears started along with all the other symptoms. That is when I was diagnosed with Lyme and started on antibiotics. Now the only remaining symptom is minor joint pain mainly in wrist and right knee. Don't need pain killers, just occasional stabbing pain that will go away for weeks and then come back for a hour or day, and then go away again. The longest time I had no symptoms was several months. Still on antibiotics, but low dose.
Alex
Posted by hatsnscarfs (Member # 6562) on :
Thumping in my left ear and pain in front of & in my left ear. This was my first Lyme Symptom. At first it was more in my jaw and I thought I had slept funny. It got worse and worse. When I went off abx for 2 days it got totally out of control. Now after 6 months it is getting better but I do feel it at least a little each day. I gauge my progress by this symptom. h&s
Posted by Recipegirl05 (Member # 6729) on :
Insomnia, speech problems and short-term memory problems
Posted by BugBarb (Member # 210) on :
1.Excessive unrefreshing sleep 2.Excessive daytime sleepiness (EDD) (on that one you can tell p;eople "I have EDD". I like confusing people)
Posted by Walnut (Member # 6585) on :
Light sensitivity is the first consistent symptom that I remember getting and still have.
After starting treatment, I would say light sensitivity and brain fog.
Posted by cootiegirl (Member # 3216) on :
Constant ringing in my right ear.....24/7. Just wish I could change the tone once and awhile for some variation.....
Brain fog and fatigue still rank up there but they are starting to vary a bit more. As my treatment is working, I find I have more energy at times. The more energy I have the busier I try to be, and actually the foggier I get because I'm trying to multitask, which my brain is just not ready for....Michael, I'm a neurolymie.... cootiegirl
[This message has been edited by cootiegirl (edited 12 January 2005).]
PS...I am occassionally starting to feel the arthritis.
Posted by cmichaelo (Member # 5873) on :
Wow, what a response!
There are so many now that I'm considering compiling the "data" and make some sort of table from it.
One thing I wish you all would do, and I know this is a totally unreasonable request, is to edit your responses to indicate which type of Lyme you have.
And to be a bit crude about it (and to make it easier for me to make the table), I'm gonna define the following three types of Lyme:
1. Neuro related 2. Arthritic/muscle related 3. Skin related
Please indicate those types of Lyme that mainly describe your symptoms.
Michael
Posted by GEDEN13 (Member # 4151) on :
treatment......
for those eye's, use differant% darkness..day /night....gary
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Posted by RBDaisy (Member # 6774) on :
This is my first time to post. Where would be best place for me to start posting some questions I have?
Posted by SandiB (Member # 1557) on :
Welcome....
Click on New Topic....and type your questions. It will start a new discussion topic at the top of the page for Medical Questions.
SandiB
Posted by quic (Member # 5262) on :
I've got neuro lyme. Ears started ringing 2/16/2004 and haven't stopped yet.
- Mike
Posted by trying2bsunny (Member # 5798) on :
I started out with neuro my longest symptoms are constan unrelenting headache and no short term memory. I got lost 2 blocks from my house a while back. Also make numbers backwards.
Am now starting to add to this a constant lower back pain that nothing even begins to touch.
Posted by georgi (Member # 1622) on :
all of the neruo symptoms, ringing in the ears constanly, memory, tingling and burning all over esp in teeth, down my spine into my legs and feet, joint pain not so bad, this is after 20 years since 1986, have no hope that this will go away?
Posted by duke77 (Member # 5051) on :
Chest pain that comes and goes, numbness and tingling in fingers and toes, knee pain that comes and goes, Floaters in my eyes that are a constant symptom, eyes ringing (have this for 4-5 years before being diagnosised.) Fatigue, short term memory loss, I used to get dizzy bad especially motion sickness in the last 6 months that has seemed to pass.
Posted by pattiecake (Member # 6424) on :
Mine is definately SKIN lyme (and bart) but other symptoms that I had that left are :
facial and muscle twitching, insomnia, irregular heartbeats, fatigue, hair falling out, joint pain, stabbing electric pain that would migrate. But by far and away the skin problems that I have had are slowly going away but are definately the worst for me. Pattiecake
Posted by DolphinLady (Member # 6275) on :
Neuro lyme in my case although I do get pain in muscles and joints.
Symptoms that are hanging on after 20 mos of oral abx are fatigue, brain fog/overwhelmed easily, mcs, orthostatic intolerance, emotional lability, pain, blurry vision.
No coinfection diagnosis to date.
These have all improved and continue to improve with treatment, but I still can't work, exercise and do a lot of normal activities because of these symptoms.
Posted by snowboarder (Member # 6346) on :
Head and neck pain diagnosed as TMJ for 11 years and neuro symptoms for 4 years.
Posted by Meemer (Member # 6620) on :
I was an arthritis person,now I am neurological I guess...
pressure behind the eyeballs, facial pain on the jawline, cheekbones and eyebrow line. (It ius in the same location where I felt pain when I was recovering from Bell's Palsy}
Rib pain (if touched only) under my arms, and under breasts and the back of the ribs. Other than these I feel pretty good!
Does anyone share these symtoms?
Meem
Posted by Meemer (Member # 6620) on :
I was an arthritis person,now I am neurological I guess...
pressure behind the eyeballs, facial pain on the jawline, cheekbones and eyebrow line. (It is in the same location where I felt pain when I was recovering from Bell's Palsy)
Rib pain (if touched only) under my arms, and under breasts and the back of the ribs. Other than these I feel pretty good!
Does anyone share these symtoms?
Meem
Posted by HEATHERKISS (Member # 6789) on :
HEADACHES FOR THREE YEARS STRAIGHT.
NOW I HAVE CHRONIC PAIN EVERYWHERE ESPECIALLY NECK
Posted by Bill ATL (Member # 7817) on :
Fantastic question...here's why...I am new to the Lyme "club". I am still dealing with Drs. that are making me 2nd-guess what i think to be Lyme. People such as myself that are cruising LymeNet, looking for help/confirmation on these scary symptoms, will be assured that they aren't alone, and aren't "crazy".
Unfortunately, my WB is Neg, but my screen (assuming Elisa) was positive @ 1.57 reading.
I have gone through Burrescano's (sp?) list of symptoms and have had ~30+ of them. I think I am 50% Arthritic/Muscular and 50% Neuro....facial skin will redden occasionally...like rosatia (sp?)
Worst:
Spinal pain (Arthritis) - Thoracic region (but can be entire) Vision - headaches in PM from staring into PC @ work. (improves when wearing glasses vs contacts). Nerve/Muscle pain/damage left elbow **Heel pain - left foot One I haven't seen yet in other replies: Testicular ache (occasionally).
Glad you all are out there!
Bill
Posted by Bill ATL (Member # 7817) on :
Also...
I have had the Rib pain..again left sided. This, along with the heel pain, is what makes me believe that I have a Lyme-type of infection. I've had the rib pain once, and heel pain twice.
Can someone confirm that these two symptoms very unique to Lyme? I have never heard of any other diseases that could cause those symptoms to come, go, and return again. I would be interested in seeing if those could be considered a "Red Flag" of sorts, for Lyme (at least "self") diagnosis.
Posted by Lymetoo (Member # 743) on :
Muscle and joint pain
doesn't bother me much as long as I take my Xango
------------------ oops! Lymetutu
Posted by Meemer (Member # 6620) on :
Yes I have both heel and rib pain. I also have what was diagnosed as Achilles Tendonitis. My other lingering pain is facial on the jawline, cheekbone and eyebrow line. Sounds weird I know. Now I think it may all be related to Lyme.
meem
Posted by cmichaelo (Member # 5873) on :
quote:Originally posted by Meemer: Yes I have both heel and rib pain. I also have what was diagnosed as Achilles Tendonitis. My other lingering pain is facial on the jawline, cheekbone and eyebrow line. Sounds weird I know. Now I think it may all be related to Lyme.
meem
I don't have the heel and rib pain.
Instead I have pain in upper/rear left hip area as well as the left calf (feels a little bit like a sore tendon, though higher up.)
These pains come and go too. The pains are particularly pronounced when I'm taking Minocycline.
Michael
Posted by paulscha (Member # 6334) on :
Great thread. I'm living proof that neuro symptoms (migraine, seizure, head presure, ringing ears, visual disturbances, loss of balance, cognitive deficits, various forms of neuropathy) and arthritic symptoms (severe joint inflammation) can coexist and be equally severe in the same patient.
What I have found, though, is that as pain (joint, muscle and nerve) grows in intensity, fatigue and brain fog tend to recede - not that you aren't still experiencing them, but the effect of the pain is to cast everything else in the background.
Posted by cmichaelo (Member # 5873) on :
up for self-promotion... Posted by Lymetoo (Member # 743) on :
quote:Originally posted by cmichaelo: up for self-promotion...
------------------ oops! Lymetutu
Posted by Sue vG (Member # 3143) on :
Twitching, muscle pain, fatigue and short-term memory problems.
Posted by Monica (Member # 224) on :
Good question.
Nothin' good, that's for sure, no matter how long or short the symptom sticks around.
Weakness in right leg started in late 1995. After I broke my ankle in 2001, started to have a lot of trouble walking. Seemed to have forgotten how. Have been walking with a cane since 9/2003. Balance is very bad. Oddly enough, now the right leg is relatively strong; stronger than the left.
Posted by dullchime (Member # 6024) on :
Mine have been shortness of breath with the herx's- vision and flush feelings.
[This message has been edited by dullchime (edited 24 January 2005).]
Posted by artbyjessie2 on :
I have a tie..
HEADACHES JOINT PAIN
there are lots of symptoms but those are the two that make me a useless lump on a log.
Posted by achey (Member # 6284) on :
cognitive receptive ability: understanding what I read, see and hear
Short term memory loss
Neuropathy
Posted by Kaykay (Member # 6732) on :
Vertigo, speech problems, dyslexia, but joing pain is what brought me to diagnosis of Lymes
Posted by lou (Member # 81) on :
Sleep disturbances, back pain and tinnitus.
I am leaving out permanent damage to my eyesight because I know it is permanent. The back pain and tinnitus may also be permanent, but it is hard to tell since those do have fluctuations.
Posted by Barngirl (Member # 6391) on :
Hands and legs going to sleep all the time. Ringing in ears and floaters.
Posted by overlook (Member # 6414) on :
1. Physical - Aches in my shoulder, elbows and wrists that wax and wane over the day. Sudden shooting, disabling burning pain from shoulder down right arm which doubles me over and brings inadvertant tears streaming. Muscle aches that move around my arms. And, an unexplained 2" dimple in my uper arm muscle that burns a lot. 2. Neuro - Brain fog, I got stopped by a policeman last week who wanted to know if I knew how to drive. 3. Emotional changes - I used to do good bit of public speaking. I don't dare now since I burst out in tears twice without warning.
Posted by overlook (Member # 6414) on :
1. Physical - Aches in my shoulder, elbows and wrists that wax and wane over the day. Sudden shooting, disabling burning pain from shoulder down right arm which doubles me over and brings inadvertant tears streaming. Muscle aches that move around my arms. And, an unexplained 2" dimple in my uper arm muscle that burns a lot. 2. Neuro - Brain fog, I got stopped by a policeman last week who wanted to know if I knew how to drive. 3. Emotional changes - I used to do good bit of public speaking. I don't dare now since I burst out in tears twice without warning.
Posted by minoucat (Member # 5175) on :
Me (have had many sx, including arthritis, GI dysfunction, muscle pain and weakness, exhaustion, brainfog, anxiety) = INSOMNIA AAARGH = Exhaustion, improving somewhat - confusion, but that's really improving = not much headache or body pain left, no arthritis, some muscle weakness.
The Hubby, who's had every symptom at one time or another: - exhaustion - anxiety, confusion, short term memory loss - continuous muscle and joint achiness and muscle weakness, although much better than it was. - sleeps a LOT, often unrefreshing sleep.
Posted by mvilas (Member # 3854) on :
Widspread muscle fasiculations,parathesia, and floaters....those seem to be the symptoms that don't go away even while on abx. My other symptoms seem to come & go, but these seem to be here to stay Posted by duke77 (Member # 5051) on :
Widspread muscle fasiculations,parathesia, and floaters....those seem to be the symptoms that don't go away even while on abx. My other symptoms seem to come & go, but these seem to be here to stay
I must have the same strain as you I totally agree. I have always heard Lyme symptoms comes in cycles but the fasiculations, floaters, and parathesia are a constant for me too.
Posted by hopeful123 (Member # 3244) on :
Great topic!!!
Lack of energy bordering on exhaustion. Fogginess. Lack of concentration even if great effort is applied. Multitasking impossible - either mental or physical - just coordinate s***t!!! Short term memory loss. I can't remember what else....
cause...
I HAVE BLOODY LYME DISEASE!!!!!
thanks hopeful123
Posted by artbyjessie2 on :
hopeful123 - we are neighbors - sort of - i am in New Paltz. I'm interested to see which LLMD you see? Feel free to email me at [email protected] Posted by Nukegirl (Member # 6809) on :
I haven't been diagnosed with Lyme yet I awaiting my western blot to come back. I have question for the group. I seem to exhibit and 2nd alot of these symptoms that are previously mentioned in the posts, but I am curious has anyone experienced alot of cracking of joints? I mean I know everyone gets that in the winter time, but mine seem almost excessive.
Posted by IsThereHope (Member # 6581) on :
I'm surprised nobody stated flu-like feeling without the flu? Am I alone on this, it's a lot like brain fog but it feels like the flu is about to come on but never does?
I have nuero, headaches, weakness, had vertigo for 6 months, feel out of body, constant sense of sickness, sometimes I'm hot, sometimes I'm cold, things so crazy I can't list them all. I've had it since 1991 from when I lived in Norwalk, CT.
Posted by luvmycat (Member # 4984) on :
My eyes. Still hurt and somewhat light-sensitive. Been on abx for a year and don't think it's getting to "it" there. My eyes are where my sxs first started. Still have night tremors sometimes, electrical current in legs and twitching but the eyes bug me the most.
Posted by Searching4Answers (Member # 11079) on :
Definitely my new symptoms, that I assume are lyme related. Heaviness in chest, pain in breast and armpit, radiating down, and numb and tingling fingers. All on the left side.
NOT FUN!
The worst when I was undiagnosed was muscle twitching, I could see my muscles popping under the skin. Numbness and tingling of extremities. Skin itching.
LYME SUCKS!
Posted by Katcon (Member # 9812) on :
After 5 years of treatment and a relaspe, while on abx I might add. Who knows did I get bite again, that's the million dollar question?
I have always had jaw pain to some degree, right temple pain, and sometimes eye pressure.
That's a really good day for me.
I would not have enough energy to tell you about a really bad day.
Posted by cantgiveupyet (Member # 8165) on :
Bladder pain. It was one of my last symptoms that I got and it is here to stay (nerve related damage I believe)
Posted by Andie333 (Member # 7370) on :
numbness in my right foot and pain in that hip. Plus improving but persistent brain fog
Posted by on :
oops! 
