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  • Lyme or not???

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    Old 05-04-2007, 09:26 AM   #1
    TropicalTrace
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    Unhappy Lyme or not???

    Hi All,
    I am new to the board and would like some advice on Lyme disease as you seem to all be more knowledgeable than most doctors.

    My health battle started last november. I woke up one afternoon with a nap with my son and my right leg just went from under me. It took maybe a minute or so to be able to get up again. Didn't think much of it, wrote it off as my leg was probably asleep, got up to fast, etc. But later that day more weird things started to happen, pins and needles, numbness, tingling, weakness. This started from my right leg and slowly moved up my whole rightside. By the time I went to bed my whole right side felt different than my left. Woke up the next morning still feeling weird and decide to see a GP. That was the start of the numerous test. GP did CAT scan to rule out TIA. Scan was normal so referred me to a neurologist (#1). Saw the neurologist the following day and had improved some. He sent me for an MRI and numerous other test. Had the MRI the same day as my appointment with him. Later that same day after having approved some, I went rapidly downhill. My right leg wouldn't move properly and had the most abnormal gait. Saw the neurologist the next day and was diagnosed with a variant migraine, as my MRI of my brain was normal, was sent on my way with promises that I would be better within two weeks. Not so sure about his diagnosis, I went for a second opinion a couple days later. Neurologist (#2) was not as confident about it being a migraine and sent me for more tests, MRI of spine, evoked potentials all that fun stuff. All that came back normal.
    He then said maybe the first doctor was right and it was a migraine and seeing as two weeks had passed it wasn't uncommon for them to last 6 weeks. Was sent on my way again. Well a couple weeks later I was admitted to the hospital by my GP as I was getting worse, twitching, pins and needles, numbness, gait problems that had now include both legs, cramps, eye pain, cognitive problems, the list goes on. Doctors think MS, then not as all my tests were normal. Sent home the next day, which was good as I hate hospitals. GP talks to Neurologist (#2). Tells her maybe I have a conversion disorder??? Like I want to feel like this. That really made the blood boil.
    So on neurologist advice started to go to physical therapy, which over the next month helped me get my gait problem under control. Had to walk with a cane, which at 28 had a hard time dealing with. My gait problems resolved in January, though the twitching, cramps, eye pain and a new symptom of leg pain were worse than ever. Saw neurologist (#2) late January and he said he was convinced I had a muscle membrane problem?? and to take some calcium and it will resolve itself. Which it didn't, by mid Feb gait problem was back. Saw another 2 more neurologist one who it was in my head, the other not sure what was wrong, when I would get better or if I did that I wouldn't relapse. Gee, thanks for some answers.

    Anyways, through out this ordeal I have been glued to ****** looking up everything. I had stumbled across lyme as a possiblity but excluded it as I live in Singapore. Then months later it finally dawned on me that 2 months before I had been back home in Canada. As we were on holidays myself and my children had spent a lot of time out doors in the beautiful fall weather. Had I been bitten by a tick???
    Asked my GP about lyme, as there are little or no cases here she said it was unlikely. Lyme causes a rash, sore joints, you would had flu like symptoms. Well I don't remember a rash, my joints are sore also and my is so bad I don't remember what I had for dinner last night, so if I doubt I would remember if I had flu like symptoms 6 months ago. Convinced her to do a lyme test.
    She agreed, test came back negative (ELISA). Still not feeling any better went to see a Canadian doctor who works here in Singapore to discuss the Lyme issue, as I read the test were unreliable. After a little convincing - I had gone armed with literature on lyme - he agreed to do a western blot and to try some doxy.

    So I have been taking the doxy for 8 days. After about 3 days the gait resolved, but the rest remains. Also since being on the antibiotics every lymph node in my body is sooooo sore, I assume it is because I'm fighting something. Waiting for test results as that will determine if my new doctor will treat me after the 2 weeks of antibioics. I'm a little nervous as I feel my body if fighting something and just because my test is negative that doesn't mean I don't have lyme...right??

    Tracy

     
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    Old 05-04-2007, 04:06 PM   #2
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    Re: Lyme or not???

    Hi Tracy, welcome to the board!

    I am sorry you have been so sick. Although a bulls-eye rash is a definite sign of Lyme disease only about 50% of people who have Lyme ever get a rash.

    Below is a Lyme symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    It is common for Lyme symptoms to wax/wane and migrate around the body.

    It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

    Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Were you tested for these?

    If you need a doctor recommenda-tion, let us know. I do not know of any in Singapore, but I know of one in Canada.

    Two weeks of treatment is not long enough. What dose of Doxy are you taking? A few tips about Doxy. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Drink a full glass of water when you take it for the same reason.

    Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth (which men and women can both get). The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

    Be aware of the Jarisch-Herxheimer Reaction (herx). When people who have Lyme take antibiotics their symptoms can become worse or they can get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be scary but it is a good sign the antibiotics are working. Although it can vary individually, many people experiene this at the beginning or change of treatment and every three to four weeks.

    It is a good idea to document your symptoms daily. One easy way to do this is to list the three main symptoms you have each day with a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding go meds.

    It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

    Hang in there okay?

     
    Old 05-04-2007, 08:17 PM   #3
    TropicalTrace
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    Re: Lyme or not???

    Ticker,
    Thanks for the reply. I have done a lot of research on lyme. It was the Dr. B's document on Diagnosis and Treatment I took to my doctor to convince to the test and trial treatment. I have not yet been tested for co-infections. The western blot was done here at hospital lab in Singapore.

    As for the Herx, not sure if I have experienced this yet or not. I find though since being on antibiotics that I need to drink a lot of water or I feel pretty crappy. I assume the water is washing away all the toxins.

    I am only on 200mg of Doxy a day awaiting results. I have tolerated the meds only had a little stomach issue on the first day.

    Anyways, thanks for listening it feels good to share what I am going through with other people who understand

    Tracy

     
    Old 05-05-2007, 06:00 AM   #4
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    Re: Lyme or not???

    Hi Tracy. If you need help interpreting the Western Blot, let me know.

    You probably already know that 200 mg of Doxy is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. I don't know if you will herx on the lower dose. Maybe your doctor could consult with a Lyme doctor in the states.

    Drinking a lot of water is important. So is a healthy diet, exercising when you are able, and taking supplements that can stregthen the immune system.

     
    Old 05-06-2007, 05:18 AM   #5
    TropicalTrace
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    Re: Lyme or not???

    Ticker,

    Western blot came back negative though report does not list any band information just says negative.
    Not sure where to go from here.

    Tracy

     
    Old 05-06-2007, 07:37 AM   #6
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    Re: Lyme or not???

    Tracy, I suggest you have the Western Blot done at IgeneX Lab in Palo Alto, CA if possible. They use more sensitive testing and list more bands on the Western Blot.

     
    Old 05-06-2007, 08:10 AM   #7
    TropicalTrace
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    Re: Lyme or not???

    Ticker,
    Who is the doctor you know of in Canada. Is he the one in Hope B.C?

    Tracy

     
    Old 05-06-2007, 10:28 AM   #8
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    Re: Lyme or not???

    Hi Tracy. Yes, Dr. Ernie Murakami.

     
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