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    Old 11-30-2006, 08:18 PM   #1
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    Unhappy Brain Spect Scan


    I have been suffering with symptoms consistent with Lyme disease for several years. I live in a very high Lyme disease area in PA. My mom has it, my father (who is recently deceased) had it and about 8-10 of their neighbors have it. My sister now has symptoms also. I scheduled an appointment with a Tick Borne Disease Clinic in my area and last week found out the Western Blot was negative. I also had a brain spect scan but the results were not in at that time. The doctor told me everything was negative and to just follow up with my primary doctor. Today, though, I got a call from the doctor who said that my brain spect scan results just came back and it is highly suggestive for Lyme disease. He wants to me come in next week and discuss treatment (i.e. IV antibiotics). I know that many people (including my family) have had negative results at first with their lyme tests so this is not unusual. But now I am concerned because I show brain dysfunction. Can a diagnosis be made with a brain spect scan and symptoms? I literally have over half of the symptoms listed for Lyme and all my other blood work is within normal limits. I do tend to obsess over looking everything up on the internet. Maybe I should just not worry and let my doctor figure it out. I think I am causing myself more anxiety than I should. I am happy, however, to finally have someone agree there is something not right. I often feel like when I complain of headaches, joint pain or fatigue, that everyone is saying, yeah, yeah, you always have that..... Now I can say, See, there is something wrong.

    Maybe I am venting, but I am a bit nervous about all of this. My mom, when she starts treatment (she has suffered for about 10 years with Lyme disease) she gets much worse. I guess it is the Herxheimer affect. I am worried that if I feel bad now, what happens when I start treatment? I was on two courses of antibiotics almost 2 years ago for a respiratory infection and ended up in the hospital because of severe chest pain (after which they diagnosed me with diabetes, even though it doesn't run in my family and I am not in a risk group). It is all very frustrating. To top it off, my husband is being transferred to Florida and we move at the end of February so I would like to get started on as aggressive a treatment as possible now before we move and I have to change doctors (and Lyme disease isn't prevalent in FL - thank goodness).

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    Old 12-01-2006, 06:57 AM   #2
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    Re: Brain Spect Scan

    I also had a neg western blot last year and my brain spect was abnormal. My neuro had wanted to say MS. But I knew it wasn't. Because I had had lyme 19 yrs ago and was test positive then. But wasn't treated long enough.

    If you haven't been tested thru Igenex you need to have them do the test as they are the most accurate. My test results last year with them were 5 lyme bands all indeterminate which my LLMD said means I had it. But not by CDC standards. Then Earlier this year my western blot did show positive lyme bands.

    If you haven't been tested for the co'infections, you need to. I also had babesia, and several others were highly suspected.

    I agree that you should do something asap. There are LLMD's in FLA. Ticker can give you names when you need them.

    Hope you get some answers soon. As you mentions, most people herx and they feel worse than before they started treatment.

    I started Sept 2005. I started on IV's. I am still pulsing orals. I can say today I feel that I am 50% better but I have had alot of improvement. I felt really good for the couple weeks before I had to go back on orals this week. But I do see the light at the end of the tunnel.

    Keep us posted.

    Old 12-01-2006, 12:39 PM   #3
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    Re: Brain Spect Scan

    My wife Jeanne (wacko woman) was diagnosed with Lyme disease. We chose not to do abx, instead used Dr. Jernigan's treatment (Beating Lyme Disease) He uses biological medicine (tinctures, homeopathic, magnets, etc.) she never had a herx. Now, one and a half years later, she is up and running. (she has had Lyme for 29 years so this was a real battle) She still has some brain issues but she is promised they will heal with time.

    So as Marsha said, do get a more accurate test. It is important to get started.

    Jeanne had a SPECT scan by the Amen clinic. She had severe brain damage because of the ammonia (Lyme neurtoxin). She was told that her brain looked like a near drown victim. Her Spect scan looked similar to other patients with Lyme disease. So if you have a competent Dr. I do believe they can make a good judgment call.


    Old 12-01-2006, 03:22 PM   #4
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    Re: Brain Spect Scan

    Hi dlm248, welcome to the board!

    I am sorry about the loss of your father.

    I am sorry you and your family have been sick for so long. Is the clinic you went to in NJ?

    No Lyme test is completely reliable and results can vary by lab. Testing should be used as an aid in diagnosis not solely for diagnosis. Do you have a copy of your results? If you want to post them, we can help you interpret them.

    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
    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
    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 very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and 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.

    There is an excellent Lyme doctor in Hermitage, PA. If you would like his name, let me know. If NJ is closer for you, there are a couple of doctors there who come highly recommended also. Are your other family members getting properly treated?

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

    Once you betgin treatment, it is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and 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 to the meds.

    What part of Florida will you be moving to? Lyme disease is the second fastest growing infectious disease after AIDS in the US and the number one vector-borne disease in the US. It is in every state, including Florida.

    It is also important to learn as much as possible. I recommend reading
    "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner, and Dr. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.

    Hang in there okay? Good help is available.

    Old 12-01-2006, 03:22 PM   #5
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    Re: Brain Spect Scan

    triple post!

    Last edited by ticker; 12-13-2006 at 02:20 PM.

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