Aa
lyme? seeing/seen many docs over this...negative lyme titer....
Years of pain with a"half hearted" dx of Fibro, I now suspect it could be Lyme Here are my symptoms which have been consistent for at least a 3 months. I have dealt with it thinking it was all contributed to the FMS dx but I am second guessing that.....
I have noticed that upon waking before I get out of bed I will shake or vibrate as if chilling, this lasts only a few seconds. This also happens right before I fall asleep.
Flushed or hot feeling as with a fever but when I take temp it is normal or slightly below
Constant cramps in toes and fingers
Feel like I am getting the flu after outdoor activities, lymph node tenderness, achey, scratchy throat sometimes, feverish, next day I will develop a fever blister
worse symptoms preceding menstruation
Periods coming about every 2 ½ weeks and terrible pms including cramps headaches severe irritability-this seems to be worsening
Blurry vision as if looking through a pair of dirty or smeared eye glasses also at times my eyes will feel hot or watery or dry and irritated or red
Brain fog
Burning sensation under skin
Itchy skin not due to bites which sometimes is worse at night or laying in bed
Rib soreness mainly left front ribs
Sore skin as with a sunburn various places and intermittent
Sore skin in areas such as lymph node tenderness in neck, throat, collar bones, arm pits, breasts, chest
Chilling sensations in legs
Left arm from elbow to wrist flashing sensation of pins and needles and feeling like the circulation is being cut off for a second then allowed to flow again (uncomfortable but not really painful)
Difficulty reading (I have to read things several times before it “clicks”)
Have trouble hearing and have to ask people “what?” sometimes I will just try to process it in my head before I asked them to repeat their selves…I hear it but it doesn’t always compute???
Sharp ear pain which comes and goes ringing in ears which also is here and there
Floaters and flashes of light in eyes mostly left side (sometimes this is worse when I move my head quickly) and have experienced light flash when there is a loud noise
Occasionally when walking one foot will “catch” of the floor and I will stumble but not fall (if this happens once then that day I will do it multiple times)
I tend to topple a little to the left side while standing or as I begin to walk until I get going
Fatigue and exhaustion not relieved by sleep
Heavy feeling arms and legs like they are made of concrete
Shoulder pain continually on left side and to the bottom of ribs to my spine
Feeling like my spine is too short for my body and pulling sensations in spine when I turn my head or bend
Same feeling in my eyes-like the optic nerve is too short and have eye pain when I turn my eyes
Rice crispies popping and cracking, gurgling feeling in neck when I turn head
Fever sometimes daily 99*
Joint pain almost continually in fingers and toes
Inside of knees joints continually hurt
Finger joints on left hand index finger swollen and painful now moving to the right hand, very end of my fingers hurt and first joint pain is constant
Left knee upon waking with feel hot from the inside out and there is some fluid on knee, odd feeling in that leg from knee down
Intermittent ankle pain
Bottoms of feet feel swollen and painful when walking especially upon waking or from sitting
Tingly feeling in lips, fingers and toes
Numbness in left shoulder/back area
Light headed especially upon standing
Bladder spasms and sometimes painful urination which causes me to wince
A couple of times felt like the room flip flopped upside down
Depression (on and off for years)
Anxious feeling
Insomnia
Short term memory problems (sometimes I can’t recall something I did yesterday)
Sinus issues, stuffiness, constant clearing throat, excess mucus
Stabbing pains or shooting pains and sensations (may be down arm or legs)
Restless Leg especially if I take any medication with a sedative affect such as benedryl
Restless Leg sensations in chest and arms
Waking up to clinched arms and teeth
Muscles feel like they lock when I stretch
Tearful, weepy feeling
Twitching eyes/lids
Unable to find words I am looking for
Cold hands and feet sometimes even when the weather is warm
I cannot tolerate cooler temps-I will chill and cannot warm up
Unusual pain in various places which may last a week or 2 then be completely gone
Gurgling in stomach, bloating feeling, bowel urgency but unproductive
Ovarian pain (cysts)
Frequently find myself sitting or laying in uncomfortable positions and not realizing it until it has become very painful
Low back pain
Facial swelling and fluid retention in lips and eyelids (not sure if it is noticeable to others) also in hands and feet
Feeling like my speech is slurring and hearing this but not noticeable to others
Skin sensitivity to touch
Forget what I am about to say and inability to recall words or events
fever blisters/gum sores
light sensitivity in eyes
Ear sensitivity to loud or sudden noise
Burning pain in various spots sometimes relieved by moving
Heart fluttering especially when laying on my left side
Left side of body feeling like it is “weaker”
Pain that starts on one side of body, lasting a week or so then slowly subsiding migrating to opposite side of body (mirror image pain)
Easy bruising or mystery bruising
Joint pain that sometimes has itching or burning sensation
I feel like my brain is overloaded with stimuli such as noises, people talking to me, crowds, trying to make decisions, etc and it puts me into a panic mode making me anxious, irritated and ready to snap
Within the past month I have developed a tic or twitch where my head will nod to the left (this is not noticeable to others)
Occasionally when I focus on an object it appears to vibrate
Out of the blue sleepy feeling to the point I feel like I have taken a sleeping pill or drank too much alcohol, I actually feel drunk. This lasts a few minutes or so then it is gone.
Detached feeling from surroundings or my own body
Sometimes an area on my body (when I touch it) will not feel like it is my own
I have to add that Sept 09 I had been bitten by something in the calf of my leg, which made me sick with flu like symptoms. I did have a huge red circular rash which itched at first then burned and 8 hours later swelled, was hot and painful. It extended over the shin/calf area and I went to the doctor next day. Said it looked like a black widow bite. A round of antibiotics (Leviquen) cured it I thought and within a week my symptoms were gone except for the bruising that the swelling caused. The pain was so intense at the bite area that I literally had trouble walking.
In August of this year after being bitten by 30 or 40 mosquitoes when I was in CT visiting family I came home and one week later spent the night in the ER after I become acutely ill with 103* fever, muscle pain and cramps, numbness in lips, face and extremities, severe and sudden headache, chills, sweats, hands and arms along with toes and lips drawing like I was a stroke victim. I have experienced list of symptoms above consistently from Aug 2010.
Now like I said I have had some of those symptoms on and off for years being dx'd with Fibromyalgia. At times, I never knew whether I was getting the flu or it was a FM flare. I have to add that I have worked the past 14 years as a dog grooming and come into contact on a daily basis with dogs that are loaded with fleas and ticks and I have found them on me many times.
Finding a LLMD is nearly impossible in my area. The closest one is 5 hours away. Not an option at this point. I cannot convince my doc to try any treatment for my symptoms. I do have 2 pics of the "spider" bite which is red circular....
I have noticed that upon waking before I get out of bed I will shake or vibrate as if chilling, this lasts only a few seconds. This also happens right before I fall asleep.
Flushed or hot feeling as with a fever but when I take temp it is normal or slightly below
Constant cramps in toes and fingers
Feel like I am getting the flu after outdoor activities, lymph node tenderness, achey, scratchy throat sometimes, feverish, next day I will develop a fever blister
worse symptoms preceding menstruation
Periods coming about every 2 ½ weeks and terrible pms including cramps headaches severe irritability-this seems to be worsening
Blurry vision as if looking through a pair of dirty or smeared eye glasses also at times my eyes will feel hot or watery or dry and irritated or red
Brain fog
Burning sensation under skin
Itchy skin not due to bites which sometimes is worse at night or laying in bed
Rib soreness mainly left front ribs
Sore skin as with a sunburn various places and intermittent
Sore skin in areas such as lymph node tenderness in neck, throat, collar bones, arm pits, breasts, chest
Chilling sensations in legs
Left arm from elbow to wrist flashing sensation of pins and needles and feeling like the circulation is being cut off for a second then allowed to flow again (uncomfortable but not really painful)
Difficulty reading (I have to read things several times before it “clicks”)
Have trouble hearing and have to ask people “what?” sometimes I will just try to process it in my head before I asked them to repeat their selves…I hear it but it doesn’t always compute???
Sharp ear pain which comes and goes ringing in ears which also is here and there
Floaters and flashes of light in eyes mostly left side (sometimes this is worse when I move my head quickly) and have experienced light flash when there is a loud noise
Occasionally when walking one foot will “catch” of the floor and I will stumble but not fall (if this happens once then that day I will do it multiple times)
I tend to topple a little to the left side while standing or as I begin to walk until I get going
Fatigue and exhaustion not relieved by sleep
Heavy feeling arms and legs like they are made of concrete
Shoulder pain continually on left side and to the bottom of ribs to my spine
Feeling like my spine is too short for my body and pulling sensations in spine when I turn my head or bend
Same feeling in my eyes-like the optic nerve is too short and have eye pain when I turn my eyes
Rice crispies popping and cracking, gurgling feeling in neck when I turn head
Fever sometimes daily 99*
Joint pain almost continually in fingers and toes
Inside of knees joints continually hurt
Finger joints on left hand index finger swollen and painful now moving to the right hand, very end of my fingers hurt and first joint pain is constant
Left knee upon waking with feel hot from the inside out and there is some fluid on knee, odd feeling in that leg from knee down
Intermittent ankle pain
Bottoms of feet feel swollen and painful when walking especially upon waking or from sitting
Tingly feeling in lips, fingers and toes
Numbness in left shoulder/back area
Light headed especially upon standing
Bladder spasms and sometimes painful urination which causes me to wince
A couple of times felt like the room flip flopped upside down
Depression (on and off for years)
Anxious feeling
Insomnia
Short term memory problems (sometimes I can’t recall something I did yesterday)
Sinus issues, stuffiness, constant clearing throat, excess mucus
Stabbing pains or shooting pains and sensations (may be down arm or legs)
Restless Leg especially if I take any medication with a sedative affect such as benedryl
Restless Leg sensations in chest and arms
Waking up to clinched arms and teeth
Muscles feel like they lock when I stretch
Tearful, weepy feeling
Twitching eyes/lids
Unable to find words I am looking for
Cold hands and feet sometimes even when the weather is warm
I cannot tolerate cooler temps-I will chill and cannot warm up
Unusual pain in various places which may last a week or 2 then be completely gone
Gurgling in stomach, bloating feeling, bowel urgency but unproductive
Ovarian pain (cysts)
Frequently find myself sitting or laying in uncomfortable positions and not realizing it until it has become very painful
Low back pain
Facial swelling and fluid retention in lips and eyelids (not sure if it is noticeable to others) also in hands and feet
Feeling like my speech is slurring and hearing this but not noticeable to others
Skin sensitivity to touch
Forget what I am about to say and inability to recall words or events
fever blisters/gum sores
light sensitivity in eyes
Ear sensitivity to loud or sudden noise
Burning pain in various spots sometimes relieved by moving
Heart fluttering especially when laying on my left side
Left side of body feeling like it is “weaker”
Pain that starts on one side of body, lasting a week or so then slowly subsiding migrating to opposite side of body (mirror image pain)
Easy bruising or mystery bruising
Joint pain that sometimes has itching or burning sensation
I feel like my brain is overloaded with stimuli such as noises, people talking to me, crowds, trying to make decisions, etc and it puts me into a panic mode making me anxious, irritated and ready to snap
Within the past month I have developed a tic or twitch where my head will nod to the left (this is not noticeable to others)
Occasionally when I focus on an object it appears to vibrate
Out of the blue sleepy feeling to the point I feel like I have taken a sleeping pill or drank too much alcohol, I actually feel drunk. This lasts a few minutes or so then it is gone.
Detached feeling from surroundings or my own body
Sometimes an area on my body (when I touch it) will not feel like it is my own
I have to add that Sept 09 I had been bitten by something in the calf of my leg, which made me sick with flu like symptoms. I did have a huge red circular rash which itched at first then burned and 8 hours later swelled, was hot and painful. It extended over the shin/calf area and I went to the doctor next day. Said it looked like a black widow bite. A round of antibiotics (Leviquen) cured it I thought and within a week my symptoms were gone except for the bruising that the swelling caused. The pain was so intense at the bite area that I literally had trouble walking.
In August of this year after being bitten by 30 or 40 mosquitoes when I was in CT visiting family I came home and one week later spent the night in the ER after I become acutely ill with 103* fever, muscle pain and cramps, numbness in lips, face and extremities, severe and sudden headache, chills, sweats, hands and arms along with toes and lips drawing like I was a stroke victim. I have experienced list of symptoms above consistently from Aug 2010.
Now like I said I have had some of those symptoms on and off for years being dx'd with Fibromyalgia. At times, I never knew whether I was getting the flu or it was a FM flare. I have to add that I have worked the past 14 years as a dog grooming and come into contact on a daily basis with dogs that are loaded with fleas and ticks and I have found them on me many times.
Finding a LLMD is nearly impossible in my area. The closest one is 5 hours away. Not an option at this point. I cannot convince my doc to try any treatment for my symptoms. I do have 2 pics of the "spider" bite which is red circular....
To avoid the possibility of confusion in anyone reading here, I have to disagree with your flat statement, ree4tu1, that IV abx are 'required' for neuroLyme. IV may be useful in some people, but 'required' is a strong statement that I think overstates the case.
A few years ago, IV was perhaps used more often, and is used now in some of the more stubborn cases, from what I read -- but IV is not required.
Also I have not found anywhere a delineation of the difference between neurological Lyme and non-neuro Lyme. Everyone's symptom constellations are different, and some of us have more brain involvement than others of us, but I have not read anywhere that there are Lyme infections affecting ONLY the brain/neurological systems and others affecting only non-brain/neuro parts of the body. It is instead a matter of degree, and it's the same disease however it presents.
It's like getting a cold: some people get a chest cold, some get a head cold, some get both, but it's the same virus and same disease, just expressed differently in different people.
It's all the same Lyme bacteria, and just as in Lyme's first cousin, syphilis, the spirochetal bacteria go where they will in the body; there is no border crossing they need a passport for.
A few years ago, IV was perhaps used more often, and is used now in some of the more stubborn cases, from what I read -- but IV is not required.
Also I have not found anywhere a delineation of the difference between neurological Lyme and non-neuro Lyme. Everyone's symptom constellations are different, and some of us have more brain involvement than others of us, but I have not read anywhere that there are Lyme infections affecting ONLY the brain/neurological systems and others affecting only non-brain/neuro parts of the body. It is instead a matter of degree, and it's the same disease however it presents.
It's like getting a cold: some people get a chest cold, some get a head cold, some get both, but it's the same virus and same disease, just expressed differently in different people.
It's all the same Lyme bacteria, and just as in Lyme's first cousin, syphilis, the spirochetal bacteria go where they will in the body; there is no border crossing they need a passport for.
IV antibiotics are required for neurological Lyme which is a different ballgame and Jackie is correct accroding to the experts which have published books which I if have seen,Jackie is correct, rocephin is not the only choice. I apologize, as my Lyme brain is not working 100%. There is another which begins with a "C" and I can't remember the exact name. Nt everyone can tolerate the antibiotics, however.
Anxiety is also common with Lyme ... been there, doing that.
Rocephin is not the only medication used in neuroLyme, and IV antibiotics are not always required. My LLMD prescribed only oral medications for me.
Rocephin is not the only medication used in neuroLyme, and IV antibiotics are not always required. My LLMD prescribed only oral medications for me.
Your symptoms are definitly Lyme Disease and the anxious feeling is ususally caused by the co-infection Bartonella...I do experience the same symptoms and also have been misdiagnosed with Fibro. What you are describing is definitly NOT Fibro. There are LLMDs everywhere, but they do tend to hide due to threats of licensing being taken away (very sad). I hope one can help you. There are many in PA I can recommend.I don't know where you are located. Your symptoms sound like neurological lyme which is treated by rocephin. Unforntuately I got to the LLMDs too late to tolerate treatment, then it is serious, God Bless You.
I'm sorry to hear you are feeling so poorly.
If I were in your shoes, I would find a Lyme specialist for an exam and a work up to get your history, and then the dr might order tests to see if you have been infected by Lyme or other diseases carried by the same ticks.
Many of the symptoms you describe have been reported by others here as well.
Lyme docs often don't want to be known as such and don't advertise -- maybe there is someone closer.
In the final analysis, though, what is worse -- being sick, or being in the car for 10 hours?
If I were in your shoes, I would find a Lyme specialist for an exam and a work up to get your history, and then the dr might order tests to see if you have been infected by Lyme or other diseases carried by the same ticks.
Many of the symptoms you describe have been reported by others here as well.
Lyme docs often don't want to be known as such and don't advertise -- maybe there is someone closer.
In the final analysis, though, what is worse -- being sick, or being in the car for 10 hours?
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