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    Old 09-08-2010, 10:12 AM   #1
    easttn
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    Lyme? undx'd need answers, advice

    Years of pain with a"half hearted" dx of Fibro, I now suspect it could be Lyme. I live in E. TN and the docs around here seem dismissive of this as a diagnosis. Here are my symptoms which have been consistent for at least a month but intermittent for years (come and go, I feel good for a time then I have new or strange pains/symptoms). I have dealt with it thinking it was all contributed to the FMS dx but I am second guessing that.....

    Blurry vision
    Brain fog
    Burning sensation under skin
    Itchy skin not due to bites which sometimes is worse at night or laying in bed
    Rib soreness
    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 like fluid retention 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
    Brain fog
    Cold hands and feet sometimes even when the weather is warm
    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)
    Break through bleeding between periods (which seem to be regular now but I have had frequent periods coming 2 weeks apart)
    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
    Occasional fever blisters and gum sores
    Possible 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

    Any suggestions, advice, thoughts anything would be appreciated....going to doc tomorrow and I am taking a "less passive" approach to the appointment this time.
    S~


    I have to add to my above posting that 1 year ago 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 entire calf area and went to the doctor next day. Said it looked like a black widow bite. A round of antibiotics 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.

    A month ago 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.

    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....

    Last edited by easttn; 09-08-2010 at 10:28 AM. Reason: added information

     
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    Old 09-08-2010, 11:17 AM   #2
    easttn
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    Re: Lyme? undx'd need answers, advice

    please anyone reading my post with similar symptoms or have any advice, please post.....

     
    Old 09-08-2010, 11:49 AM   #3
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    Re: Lyme? undx'd need answers, advice

    easttn,

    If you are seeing a doctor other than an LLMD I'm afraid you will continue to be frustrated and without answers. From what you have posted, I would say there is a good likelihood that you have Lyme Disease, especially with the rash you describe which fits a classic Lyme bulls eye rash, as well as your exposure to ticks and such via dog grooming. Also, The fluey feeling you describe is quite common with Lyme.

    Is there any possibility you could, instead, see an LLMD (Lyme Literate Medical Doctor)? You may have to travel but it would be well worth it. Any other type doctor is not going to be able to help you with a proper diagnosis and treatment.

    I wish you all the best and hope you will be able to find someone qualified to assist you further.

    Jen

    Last edited by jenj770; 09-08-2010 at 11:51 AM.

     
    Old 09-08-2010, 02:26 PM   #4
    easttn
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    Re: Lyme? undx'd need answers, advice

    To my knowledge there is no Lyme doctors in this area and I wouldn't even know where to begin. Yes I fear that my visit tomorrow will be futile but hopefully the doctor will give me advice on who else to see......thanks for replying....

     
    Old 09-08-2010, 03:08 PM   #5
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    Re: Lyme? undx'd need answers, advice

    Hi Easttn

    I would be extremely surprised if your condition was not related to a tic borne infection, especially as you have also had the rash, which unfortunately a lot of people do not get.
    As Jen said, you really should go and see a LLMD asap, it's highly unlikely that your regular doctor will be able to help you.

    I am yet to be diagnosed, but I'm seeing a LLMD in 1 month. I have all of your symptoms and more, and I have been down every avenue of diagnostics, and am now convinced I have Lyme.

    Good luck at the Doctor's tomorrow, you will probably need it. Ask if they can recommend an LLMD, if not you could always appeal to people on these boards to recommend someone in your area.

    Best wishes

    Ruth

     
    Old 09-14-2010, 06:34 PM   #6
    easttn
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    Re: Lyme? undx'd need answers, advice

    Saw a different doc today. My old doc who diagnosed me with things in the past. One good thing is she digs til she finds something. She sent my bloodwork out ordering a lyme igm igg lyme titer and something else. also sending me to a neuorologist just in case its not lyme. got a b12 injection-wow what a difference!!! keeping fingers crossed!!

     
    Old 09-14-2010, 07:47 PM   #7
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    Re: Lyme? undx'd need answers, advice

    I would not put much faith in an accurate titer test. If it comes back normal, get retested from Igenex in California. Many Lymies who have seen an LLMD will attest this lab is the most reliable. Test for coinfections as well.

    Last edited by guido15241; 09-14-2010 at 07:47 PM. Reason: spelling

     
    Old 09-15-2010, 04:09 AM   #8
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    Re: Lyme? undx'd need answers, advice

    Hi

    Pleased to hear you have found a better Doc to look into things for you, I would still however look into perhaps going to see a LLMD, even if you book an appointment you could always cancel if something else is found in the meantime. Why did the doctor give you a B12 shot, have you actually been tested for your B12 levels?

    Good luck to you, I hope you find some answers soon

     
    Old 09-15-2010, 06:00 AM   #9
    easttn
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    Re: Lyme? undx'd need answers, advice

    Quote:
    Originally Posted by littlehutton View Post
    Hi

    Pleased to hear you have found a better Doc to look into things for you, I would still however look into perhaps going to see a LLMD, even if you book an appointment you could always cancel if something else is found in the meantime. Why did the doctor give you a B12 shot, have you actually been tested for your B12 levels?

    Good luck to you, I hope you find some answers soon


    YEs my b12 was 258, still in the "normal range" (low being 190 I think) but I have read online that anything under 500 will cause fatigue.

     
    Old 09-16-2010, 01:31 AM   #10
    jaynelouise
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    Re: Lyme? undx'd need answers, advice

    Hi, just something that helped with my stomach probs. - I take 'Acidophilus' probiotic tablet - one with breakfast - I used to get bloating/gurgling/IBS type stuff - now it is much better - I might even say 'normal'

    Just a thought.

     
    Old 09-16-2010, 07:39 AM   #11
    easttn
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    Re: Lyme? undx'd need answers, advice

    Quote:
    Originally Posted by jaynelouise View Post
    Hi, just something that helped with my stomach probs. - I take 'Acidophilus' probiotic tablet - one with breakfast - I used to get bloating/gurgling/IBS type stuff - now it is much better - I might even say 'normal'

    Just a thought.
    yes, i have started taking probiotics also. do you know a "good" brand. i am so paranoid about things anymore i wonder if the brand i take is reliable.

     
    Old 09-16-2010, 12:32 PM   #12
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    Re: Lyme? undx'd need answers, advice

    Hi, I always look for the ones that say ''2 billion microorganisms of L.acidophilus, L casei & L. rhamnosus - per capsule. [Dairy free]

    They should be stored in the refridgerator.

    I have used different brand names, which have all seemed fine. I live in U.K

    Best wishes

     
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