lyme disease

Discussion in 'Fibromyalgia Main Forum' started by Angie812, Nov 28, 2005.

  1. Angie812

    Angie812 New Member

    I've seen lyme disease mentioned a lot on this board. Isn't being bitten by a tick the only way you can get it? When ticks bite, don't they attach themselves and have to be removed? That has never happened to me, so is it worth getting tested for it?
    Dr. diagnosed me with CFIDS. Haven't had any wierd rashes or bites lately.
    I was just curious. Any input?
  2. karatelady52

    karatelady52 New Member

    Angie,

    Below is an article from the Canadian Lyme Disease Foundation that may answer some of your questions:

    Lyme (commonly misspelled as Lime or Lymes) Disease symptoms may show up fast, with a bang, or very slowly and innocuously. There may be initial flu-like symptoms with fever, headache, nausea, jaw pain, light sensitivity, red eyes, muscle ache and stiff neck. Many write this off as a flu and because the nymph stage of the tick is so tiny many do not recall a tick bite.

    The classic rash may only occur or have been seen in as few as 30% of cases (many rashes in body hair and indiscrete areas go undetected). Treatment in this early stage is critical.

    If left untreated or treated insufficiently symptoms may creep into ones life over weeks, months or even years. They wax and wane and may even go into remission only to come out at a later date...even years later.

    With symptoms present, a negative lab result means very little as they are very unreliable. The diagnosis, with today's limitations in the lab, must be clinical.

    Many Lyme patients were firstly diagnosed with other illnesses such as Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Gastroesophageal Reflux Disease, Fifth Disease, Multiple Sclerosis, scleroderma, lupus, early ALS, early Alzheimers Disease, crohn's disease, ménières syndrome, reynaud's syndrome, sjogren's syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. see -- Other Presentations and Misdiagnoses

    If you have received one of these diagnoses please scroll down and see if you recognize a broader range of symptoms.

    If you are a doctor please re-examine these diagnoses, incorporating Lyme in the differential diagnoses.

    The one common thread with Lyme Disease is the number of systems affected (brain, central nervous system, autonomic nervous system, cardiovascular, digestive, respiratory, musco-skeletal, etc.) and sometimes the hourly/daily/weekly/monthly changing of symptoms.

    No one will have all symptoms but if many are present serious consideration must be given by any physician to Lyme as the possible culprit. Lyme is endemic in Canada period. The infection rate with Lyme in the tick population is exploding in North America and as the earth's temperature warms this trend is expected to continue.

    Symptoms may come and go in varying degrees with fluctuation from one symptom to another. There may be a period of what feels like remission only to be followed by another onset of symptoms.

    PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup)

    Symptoms of Lyme Disease

    The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
    Rash at site of bite
    Rashes on other parts of your body
    Rash basically circular and spreading out (or generalized)
    Raised rash, disappearing and recurring


    Head, Face, Neck

    Unexplained hair loss
    Headache, mild or severe, Seizures
    Pressure in Head, White Matter Lesions in Head (MRI)
    Twitching of facial or other muscles
    Facial paralysis (Bell's Palsy)
    Tingling of nose, (tip of) tongue, cheek or facial flushing
    Stiff or painful neck
    Jaw pain or stiffness
    Dental problems (unexplained)
    Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose


    Eyes/Vision

    Double or blurry vision
    Increased floating spots
    Pain in eyes, or swelling around eyes
    Oversensitivity to light
    Flashing lights/Peripheral waves/phantom images in corner of eyes


    Ears/Hearing

    Decreased hearing in one or both ears, plugged ears
    Buzzing in ears
    Pain in ears, oversensitivity to sounds
    Ringing in one or both ears


    Digestive and Excretory Systems

    Diarrhea
    Constipation
    Irritable bladder (trouble starting, stopping) or Interstitial cystitis
    Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)


    Musculoskeletal System

    Bone pain, joint pain or swelling, carpal tunnel syndrome
    Stiffness of joints, back, neck, tennis elbow
    Muscle pain or cramps, (Fibromyalgia)


    Respiratory and Circulatory Systems

    Shortness of breath, can't get full/satisfying breath, cough
    Chest pain or rib soreness
    Night sweats or unexplained chills
    Heart palpitations or extra beats
    Endocarditis, Heart blockage


    Neurologic System

    Tremors or unexplained shaking
    Burning or stabbing sensations in the body
    Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
    Pressure in the head
    Numbness in body, tingling, pinpricks
    Poor balance, dizziness, difficulty walking
    Increased motion sickness
    Lightheadedness, wooziness


    Psychological well-being

    Mood swings, irritability, bi-polar disorder
    Unusual depression
    Disorientation (getting or feeling lost)
    Feeling as if you are losing your mind
    Over-emotional reactions, crying easily
    Too much sleep, or insomnia
    Difficulty falling or staying asleep
    Narcolepsy, sleep apnea
    Panic attacks, anxiety


    Mental Capability

    Memory loss (short or long term)
    Confusion, difficulty in thinking
    Difficulty with concentration or reading
    Going to the wrong place
    Speech difficulty (slurred or slow)
    Stammering speech
    Forgetting how to perform simple tasks


    Reproduction and Sexuality

    Loss of sex drive
    Sexual dysfunction
    Unexplained menstral pain, irregularity
    Unexplained breast pain, discharge
    Testicular or pelvic pain


    General Well-being

    Unexplained weight gain, loss
    Extreme fatigue
    Swollen glands/lymph nodes
    Unexplained fevers (high or low grade)
    Continual infections (sinus, kidney, eye, etc.)
    Symptoms seem to change, come and go
    Pain migrates (moves) to different body parts
    Early on, experienced a "flu-like" illness, after which you
    have not since felt well.
    Low body temperature

    Allergies/Chemical sensitivities

    Increased affect from alcohol and possible worse hangover
    --------------------------------------------------------
    If you are contemplating testing, the Western Blot through a lab called Igenex gives a much more accurate test result. Many use the Elisa and can get a false negative.

    A clinical dignosis is important along with the lab test as the article says. Its also good to find an LLMD (lyme literate MD) as many doctors don't know much about lyme. The Fibromyalgia and Fatigue Centers are also gaining knowledge of this fast growing disease.

    Hope this helps,

    Sandy




  3. hopeful4

    hopeful4 New Member

    Hi Angie:
    The majority of people who have lyme have not had the tell-tale rash nor do they remember a tick bite. Ticks may transmit the bacteria, but it can also be transmitted by mosquitos, fleas, possibly other ways. I've recently learned about gestational lyme, transmitted from mother to unborn child.

    You bet it's worth getting tested for...it's treatable! Not exactly a picnic, but what's the alternative?

    Many co-infections and other conditions are associated with Lyme and must also be treated. So if you choose to be tested, find a doctor who has experience with Lyme, it's a complex illness requiring a LLMD, Lyme Literate Medical Doctor, as Sandy has already mentioned. And as she has also said, ask for the Igenex Western Blot test which is more reliable than others.

    Sandy:
    That's a great article you posted for all of us. Thank you so much.

    Elliespad:
    I know what you mean by "I almost hope it's positive". When will you learn your results, shouldn't they be back in by now? Good luck.

    Best wishes to all,
    Hopeful4
  4. Angie812

    Angie812 New Member

    Sandy,

    Thanks so much for the valuable information! I printed it out and am going to take it with me to the dr. next week. I just had a CBC done, but don't expect that to show anything. I would just like to have lyme ruled out. My husband works outside a lot and in the woods frequently, so it is very possible that he could have carried some little ticks home on his clothes or something. It's worth getting checked out, right? I mean, the worst that could happen is that it could come back negative.

    Thanks for all your responses.

    Angie
  5. castle

    castle New Member

    HIAGNOISED

    I AM TOO BEING TREATED AT THE FFC IN ALANTA. WHICH I TESTED POSITIVE FOR EHRLICHIOSIS WHICH WAS NEVER TREATED AND NOW HAS LEAD INTO LYMES. HOW LONG HAVE YOU BEEN IN TREATMENT? I STARTED IN AUG. AND NOW FINALLY HAVE BEEN TESTED FOR EVERYTHING THEY TEST YOU FOR AND NOW CAN START TREATMENT, WHICH SEEMS TO BE A LONG HAUL. ARE YOU TAKING HEPARIN SHOTS? I STARTED MINE ON MONDAY. I FIND IT TO BE DEPRESSING AND I'M NOT LIKING THE FACT I AM GAINING SO MUCH WEIGHT WITH THIS DISEASE! MY WEIGHT IN JUNE OF THIS YEAR WAS 118 AND NOW I AM WEIGHING 140 (DEPRESSING)10 POUNDS FROM WHERE I WAS WHEN I WAS PREGNAT.I GAINED ALL THIS WEIGHT IN 2MO. AND KNOW ONE THOUGHT THIS ABNORMAL,I HAVE NEVER HAD A WEIGHT PROBLEM AND NOW ALL THESE HEALTH PROBLEMS ARE CAUSING SO MANY OTHER PROBLEMS, I DON'T EVEN KNOW MY SELF ANYMORE. WILL ALL THIS STUFF EVER STOP? IT'S HARD TO BELIEVE THAT WE (FIBRO)PEOPLE CAN HAVE THIS MUCH STUFF WRONG WITH US, KNOW WONDER WE FEEL SO SICK. PLEASE REPLY BACK WITH SOME HOPE FOR ME TO HANG ON TO! PS. I ALSO HAVE ALL THE VIRUSES AND INFECTIONS ACCEPT FOR 4 OF THEM, PLUS HASHIMOTO(THYROID),ALOT OF HORMON PROBLEMS AND THE COAGULANT FIBERGIN(COATING IN THE BLOOD) I'M SURE I AM MISSING SOMETHING ELSE. HOW DO YOU FEEL ABOUT THE CLINIC AND YOUR SUCCESS WITH THEM?

  6. karatelady52

    karatelady52 New Member

    I'm glad you found the FFC. They will help you address the lyme, viruses and hormone issues. Lyme Diseaase messes with our whole immune system.

    If you do the candida diet (low-carb) which is the diet that helps with lyme disease, you may lose weight from it. I lost about 10 lbs. after I was on the bio-identical hormones for 3 months and the antibiotics so I'm not sure which it was but I'm glad about that.

    The Heparin shots aren't that bad really. The needle is small. You just have to get use to it. Lynn who also goes to the FFC bought a little device you can use to give yourself the shot ---- maybe she'll read this and tell you about it. Some of us have found giving ourselves the shot in our lower stomach is easier than above.

    A really great website for lyme is lymenet dot org. Introduce yourself on there and ask away because they are so encouraging and knowledgeable about lyme disease.

    The reason you don't feel like you know yourself anymore is the lyme. It can cause a lot of neurological problems but be encouraged because you are now on the right road to better health.

    It does take time to get better and you will have days when you feel worse. On those days, remember this: The reason you are feeling worse is because those nasty lyme critters and viruses are leaving your body! If you do a search on the lyme board under "detox" you will find many ways people help themselves during these rougher times.

    All of us who go to the FFC really love Dr. B and the staff. They are caring and considerate and treat us with respect.

    A little hint: If you take the large caps off on your typing and also try to break up the paragraphs a little, we can read it better. Us lymies and the fibro-ies have a hard time with long sentences.

    Feel free to ask any more questions,

    Sandy



  7. karatelady52

    karatelady52 New Member

    Be really insistent with your doctor when you ask for the lyme test to have a Western Blot done by Igenex labs. Otherwise, you will probably get a false negative (oh, I see Hopeful told you that)

    Foggedup: Oh, I don't have a brain yet either. I forget who I write what to. Duh!!!!

    Hopeful: your welcome

  8. Kimelia

    Kimelia New Member

    I had rocky mountain spotted fever when I was about 19. I'm now 34, my cfs started when I was about 24, could the 2 be related? Have y'all heard of anyone getting rmsf then lymes? Could it be a marker?
  9. karatelady52

    karatelady52 New Member

    I have been on lymenet dot org and can't find any informtion on Rocky Mountain Spotted Fever as it relates to lyme disease and its co-infections.

    I did find out RMSF is very dangerous if not caught right away unlike the other tick-born diseases that may not show up until you have chronic lyme disease.

    If it was me, I would go onto their website under medical and ask the question to see if you possibly could have co-infections from RMSF.

    If I had CFS and had had a past tick bite of RMSF, I'd be suspicious.

    Sandy