a few questions

Discussion in 'Lyme Disease Archives' started by clerty, Sep 6, 2007.

  1. clerty

    clerty New Member

    I am interested in

    How long you all have had Lyme ?

    did you know you had it?

    what symtoms do you have ?

    where you happy to have a diagnosis ?

    how is the herxing on antibiotics?

    I know a lot of questions I suppose I am hopeing I have lyme then I might improve with antibiotics !!

    thankyou Clertyx

  2. mollystwin

    mollystwin New Member

    I believe I have had lyme a long time, I can trace symptoms back 14 years for sure. I wasn't diagnosed until Feb of this year.

    My symptoms are:

    Major fatigue
    Muscle aches
    joint pain
    sinus problems
    numbing and tingling on various/all body parts at various times,
    Overall feeling of not being well
    Flu like feeling
    floaters in eyes
    blurry vision
    sleeping a lot and also
    Insomnia at times
    tooth pain

    That's what I can remember now. I also have heavy metals and candida. My dr says it's impossible to distinguish between the symptoms of metals, candida and lyme.

    I was shocked at the diagnosis even though I was expecting it, but happy, relieved really.

    The herxing is no picnic. But it wasn't as bad as I was expecting. My twin sis has lyme too and she had major major herxing, so I was very afraid!! But she was at FFC at the time and they had her on lots of meds at once. She switched drs (I go to her new dr) and the new dr is more gentle. The herxing for me is mostly fatigue and more muscle and joint pain. I just want to sleep all day. And I get very dizzy and can't drive or concentrate on anything.

    You have good question. It's a good idea to be prepared.

  3. clerty

    clerty New Member

    I have every symptom you have mentioned also Mcs I also get like a kind of vibration up and down my spine morning palpitations so how are you keeping ?

    thanks Clertyx

  4. mollystwin

    mollystwin New Member

    I forgot to mention shortness of breath and heart palpatations!! I don't have every symptoms all the time. And some days even are symptom free! Those days are few and far between, but I really enjoy them when I have them.

    I've been on abx for almost 7 months and am doing better. If I watch my diet, I do much better. I had pizza for dinner last night. Today I have muscle and joint pain as well as sinus headache and tooth pain! It's the white flour that does it to me. That and sugar are the worst!!

    I did go to work for two short days this week after being off for three weeks. I work very little and only when I feel well. Some weeks are better than others. I was off for 9 weeks last fall.

    I am slowly improving. It's hard to be patient, but necessary.


  5. munch1958

    munch1958 Member

    How long you all have had Lyme?

    For sure since a tick bite in 2001.

    I may have been bitten as a 11 year old child in 1969. That year I went to the Ozarks with my aunt. Six months later I got joint pain and a rash on my hands. They said it was eczema but hydrocortisone creams made it 100% worse. The rash cleared up when I got ABX for ear infections.

    Did you know you had it? NO

    What symtoms do you have?

    Too many to list but here's an attempt. I may have duplicated some due to Lyme brain.

    12 " sized rash on my leg
    Rashes on my hands
    Unexplained hair loss
    Headache, migraine and tension
    Pressure in Head
    White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Transient facial paralysis & trouble swallowing (aphasia/dysphagia)
    Stiff or painful neck
    Jaw pain
    Sore throat
    Sticky phlegm on my vocal chords which causes hoarseness
    Dry eyes
    Oversensitivity to light
    Peripheral visual disturbances & Phantom images in corner of eyes -- see things moving that don't move often -- Like my furniture and fridge or I think I've seen a mouse? Mostly it's shadows
    Decreased hearing in one or both ears at times
    Plugged ears
    Buzzing & clicking in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears
    Irritable bladder (trouble starting)
    Upset stomach
    GERD (gastroesophageal reflux disease)
    Joint pain - A leg fracture that wouldn't heal eventually had a total knee replacement
    Muscle pain or cramps -- Fibromyalgia??
    Shortness of breath
    Can't get full inhalation
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Burning or stabbing sensations in the body
    Fatigue -- Chronic Fatigue Syndrome??
    Numbness in body,
    Tingling of fingers
    Pinpricks -- all over -- feels like I'm a pincushion
    Poor balance
    Vague sense of imbalance
    Crashing into walls and objects
    Mood swings
    Lyme Rage
    Unusual depression due to low adult growth hormone
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions
    Crying Jags 5-6 per day
    Insomnia with Difficulty falling and staying asleep
    Memory loss (short or long term)
    Mental Status changes
    Difficulty with concentration or reading
    Going to the wrong doctor's office
    Forgetting how to perform simple tasks like cooking & baking forgetting ingredients in recipes that I've made a zillion times
    Loss of sex drive & sexual dysfunction -- anorgasmia
    Unexplained weight gain (30 pounds!)
    Extreme fatigue
    Lymph nodes in armpits and groin feel like marbles
    Unexplained fevers
    Symptoms seem to come and go -- different every day
    Pain migrates (moves) to different body parts
    A "flu-like" illness started in 2001 but has never gone away
    Low body temperature
    MCS - intolerance to perfume & chemicals
    Increased effect from alcohol
    Bad feeling the next day

    Were you happy to have a diagnosis?

    Thrilled!!!! Once you know what causes it then you can determine how to treat it. Way better than the typical prognosis for CF & FM which is the rest of your life.

    How is the herxing on antibiotics?
    Some people don't herx. If I do it's very mild and only for the first 3-4 days. This made me wonder if I really have Lyme. I've heard herxing on Flagyl is brutal but I just got depressed.
  6. Di1207

    Di1207 New Member

    I got lymes about 3 1/2 years ago. I just tested positive in april. I had horrific diganosis, all wrong. Pumanary hypertension [fatal in about 2 years]. MS not a good thing to hear.Spent a week in the cardio unit in a major hospital and 2 days in the cardio unit at the u of Penn Hosp.When I tested positive for lymes I was thrilled to finally have an answer. But sad to find out how hard it is to be treated. Now I know what a long hard road lays ahead.I have or had [it morphs into various symptoms] the same symptoms as munch.I herxed in the tanning booth 3 yeras ago and never realised what was going on. Once I started oral antibotics[ about 4 months ago] I herxed pretty bad. Burning fevers, flu like fatigue and body aches,Facial numbness, Bells palsay like slurred speech. These lasted about 2 days. The fatigue has never left,3 months and counting.I like you am hopeing to inprove with antibotics. I am on a mission to be treated with I V antibotics. I wish you good health. Stay possitive and keep fighting.
  7. DiannaS

    DiannaS New Member

    Hi Clerty,
    My answers:

    How long you all have had Lyme ?
    Officially 1 yr. More than likely closer to 7yrs.

    did you know you had it?
    NO, but I should have known.

    what symtoms do you have ?
    Fibromyalgia, fatigue, numbness and tingling, joint pain, some metabolic changes (my last bld test came back that my iron levels are low and my hemoglobin H1c came back as 6. It's never been over 4.9 and I've been told that insulin resistance is a symptom of lyme).

    where you happy to have a diagnosis ?
    Not really...I knew what I had in store for me from seeing other lyme patients. Not a pleasant time to be had :(

    how is the herxing on antibiotics?
    I had it really bad. When I first was treated, I thought I was one of the lucky ones that wasn't going to herx. Then it hit me and it was bad. Nausea,dry heaves,fibro flair, chills and fever, LYME RAGE...omg, that's the worst! Haven't seen anyone mention lyme rage.
    I'm on my third round of abx. This time it's amoxil and probenecid. Not herxing as bad this time. Good thing 'cuz my doctor has finally educated himself enough to treat this disease aggressively and stop namby-pambling around. He's planing on keeping me on treatment this time until my CD57 comes up a little. (it was 46 a couple of weeks ago on my last test from LabCorp)
    Be well,