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  • Lyme's Disease??? please tell me what you think.

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    Old 08-06-2007, 08:15 PM   #1
    DIAL
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    Lyme's Disease??? please tell me what you think.

    Hi my name is Nick, I am a 24 year old male and I have been sick for 8 months. I am a Police Officer in AZ and now my Career is about to be put on hold. In October 2006 my life started to go upside down. I was standing on a domestic call at work when I suddenly became very dizzy. I began to feel like I couldnt breath very well and had to go home. when I got home I began to get tremors and shake. I went to the emergancy room where I was tested and sent home with no relief. I have been to the Emergancy room a total of 9 times since that night, and has had every test known to man conducted. CT of brain, heart, lungs, ETC. all came back normal. I had the following symptoms: Light headed, dizzyness, shortness of breath, tremors, extreme exhaustion, always tired, heart palpatations, anxiety, and more. I had to take a medical leave from work due to the fact it was unsafe for me and I couldnt function. In a 3 month period I lost 30 pounds! One day I was drinking some tea with honey, I suddenly began to feel light headed and dizzy. My brother, who has a diabetic son mention I looked as if I was going "high." I bought a glucose monitor and found my sugars hitting 195 and 200 off a cup of Mountain Dew! this was rare b/c I would drink soda like water when on Grave yard shift. I went to a Endo who tested me and agreed that my sugar was abnormally high, but my A1C was normal so he said "I believe your becoming a diabetic, come back when your full blown and hitting 200 all the time" I was shocked and very frustrated.

    I went to a second Endo who said that was nonsense and started me from scratch. They found some interesting things. Yes my sugars were high, but why? they stated they thought it was due to something else. Well it turns out My Cortisol is low, on two different 8:00 AM test it read at 2.3, they stated it should be 5 or higher. Also they found my testosterone was low as well at 199, they stated it should be 400 or higher. They stated due to low Cortisol, and testosterone, this would explain why my insuline is not breaking the sugars in my body down thus causing it to go high. So great now what??? I have taken a Cortisol stim test to see if I have Addisons but I suspect it will come back stating "normal" so I must figure out the best form of treatment. I tried Andro Gel and Andro derm for the testosterone problem, but those medications made me sick. I went to a Certain "famous" clinic in Scottsdale and saw a Doctor who said "your levels are fine, you have Anxiety" I asked him well if i have Anxiety, couldnt it be a biproduct of another condition? he stated "no" I found this hard to believe and reasearched on my own. I found exstensive creditable sites with very acredited doctors on the subject of Adrenal exhaustion, and its symptoms, which I had almost all of them. one symptom most sites listed was Anxiety! I am very Frustrated and dont know where to turn for help. has any one else had these problems? or heard of such a thing?
    thanks
    -Nick

     
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    Old 08-06-2007, 10:44 PM   #2
    bigstan
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    Re: Lym's Disease??? please tell me what you think.

    Hi Nick, Welcome to the board. Your symptoms sound so much like mine. You will get kind advice and suggestions from people who are in there own private hell like myself. I'm 40. I live in Michigan. In January 2006 I became extremely ill and haven't recovered yet. It started with flu like, dizzy symptoms that I've never felt before. I tried to work but was sent home so many times. After a short leave I still haven't returned. It has been a terrible nightmare of 18 months now for me. In February the palpitations of the heart started. I had the stress echo test. Passed with flying colors. In April 06 the ear ringing (tinnitus) in both ears started. I hear this noise every day 24/7 and it hasn't gone away yet.

    Fast forward May-September 06. Developed severe panic attacks and anxiety. Spent the whole summer of 2006 indoors. In October the terrible headaches started. I went 30 days before I went to the ER and had a CT of the head. Normal no bleeds. I went to three ENT doctors. Had every test under the sun. Again normal tests. I have had 3 MRI's of the brain and cervicle (neck). Some things popped up like a slightly disk bulge at the C6-7 level. I have been assured that it doesn't cause my symptoms. I spent $26,000.00 dollars out of my own pocket because I had no insurance. That changed in December 2006. I now pay a monthly premium because I knew then I was seriously ill.

    Fast forward to April 2007. It was suggested to me to be checked out for Lyme disease. My doctor ordered the Lyme elisa test. It was Negative. I didn't know then what I do now that this test is bascially useless. The majority of people who have this test are Negative. Again my doctor chalked it off to anxiety and panic attacks. His treatment: Here take these magic anti-depressant pills. Just a total nightmare with my old doctor. I then started to read everything that I could about Lyme on the internet. I couldn't believe all the symptoms that I had were so consistent with Lyme disease. I came across this website on the internet. I did exactly what you are doing by asking questions. I found a LLMD or Lyme literate doctor. There are labs in the US that test only for Lyme. IgeneX out of California tested my blood on the Western Blot. I tested positive on 4 different bands. The CDC states that a person is positive if positive on at least 5 bands. I also had two bands that were ideterminate. My LLMD has now put me on a picc line (home iv antibiotics) to fight this disease. At this point my neurological symptoms are so bad that oral antibiotics won't help.

    Its been a long grind for me. I now have dizziness everyday, severe anxiety, difficulty walking, a sense of going out of my mind. Plus the symptoms I mentioned before and a whole list of others. There is good advice on this board. If Ticker reads your post she has a list of all the symptoms that Lyme disease can cause. I suggest reading it and checking off what you have and then find an LLMD in your area.

    Good Luck

    Last edited by bigstan; 08-06-2007 at 10:52 PM.

     
    Old 08-07-2007, 02:07 AM   #3
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    Re: Lym's Disease??? please tell me what you think.

    It could be likely that the low cortisol and testosterone are due to struggling adrenals as a result of fatigue from dealing with Lyme and possibly additional co-infections.

    Glad you followed up and stopped in here to say hello. I'm happy to see you are keeping an open mind.

    Last edited by itsmylife; 08-07-2007 at 09:37 PM.

     
    Old 08-07-2007, 05:55 AM   #4
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    Re: Lym's Disease??? please tell me what you think.

    Nick... I was in the same boat you are..I'm a 29 yr old female... I also am a police officer.. Back in April I started having similar symptoms.. Dizzy, lightheaded, shakes, anxiety and panic attacks for no reason and out of the blue, headaches, jaw pain, neck pain, low blood pressure, and low tempeture.. I had to stop working in april it wasnt safe for me to drive patrol.. I then saw 2 neurologists, 3 cardiologists, 3 ENTs, 2 Endo's, Infectious Disease Dr, Headache specialist, Spent a week in a "great hospital", And had 6 ER visits in 5 weeks, and had multiple trips to the "best" hospitals in NYC, spinal taps, every test you can imagine.. Everything was normal except I was testing positive for lyme on the ELISA test but when my Dr.s sent it out for the western blot.. It would come back negitive due to I didnt have enough bands for the CDC criteria.. Finally thanks to everyone on this board.. I made an appointment with a great LLMD in NYC.. I had my appointment last Wednesday.. He said I absolutley have Lyme and that it has already affected my Central Nervous System.. He started treating me aggressivley with antibiotics and soon I will be having a Picc Line inserted for a minimum of 12 weeks.. Everyone I saw told me I didnt have lyme and that I was having anxiety attacks.. Also that I must be stressed out being a police officer.. That was so fustrating being I love my job and the people I work with.. Yes, its a stressful job.. but far from causing my symptoms.. I love my job and cant wait to get back.. I have been feeling better each day on my new medicine.. Go to a good LLMD... tell him your story.. Hang in there and keep me posted..

     
    Old 08-07-2007, 06:26 AM   #5
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    Re: Lym's Disease??? please tell me what you think.

    Hi Nick, welcome to the board!

    I am sorry you are going through so much. I know it is frustrating. I think it can be hard to find someone who can properly treat adrenal disorders.

    Do you think you may have Lyme also? Some people who have Lyme had adrenal problems also. 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

    When Lyme disease is a possibility, it is very important to see a kowledge-able 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 also transmit several co-infections including Babesiosis, two types of 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.

    Babesiosis can cause shortness of breath and heart palpitations. Do you ever have night sweats?

    I do not know of any Lyme doctors in AZ. The closest I know of are in CA. If you would like their names, let me know.

    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.

    I hope you can get some answsers soon.

     
    Old 08-08-2007, 05:06 PM   #6
    DIAL
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    Re: Lym's Disease??? please tell me what you think.

    Ticker, I would love Information on good doctors.

    I think This very well could be lym's. I found out that a partner I rode with from another police department about a year ago went to the hospital and was diagnosed with Lym's. This was shortly after I had rode with him. So I may have been bitten around the same area as him geographically speaking.


    Kelly, how has your department treated you? I had to go on Reserve b/c it was too dangerouse for me to be on patrol. I found out real quick who my friends were. I was basically forced to resign from full duty, they wouldnt give me light duty, and most the Officer's I work with turned their backs on me. They say I'm faking my health problems, and give me the cold shoulder. they dont like the fact they have to take more paper when im not there. I laugh because why would I fake it? I'm completly broke, and my house is in danger of being furclosed on! I aslo was told by several doctors, some at the mayo clynic, that it was only Anxiety, I dont believe this because I have very strange lab results. I went to a naturalpath who ran a stool test and stated I was over run with free radicals, bacteria, and candida. Just thought I'd get a fellow Officers experience. I feel totally betrayed by many of my fellow Officers.
    oh and ITSMYLIFE.....always buddy, I will have an open mind.
    Thanks for the advice
    -Nick

    Last edited by moderator2; 08-08-2007 at 05:28 PM.

     
    Old 08-08-2007, 05:50 PM   #7
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    Re: Lym's Disease??? please tell me what you think.

    I'm so sorry that you're having to go through all of this. We all definitely understand being shunned by our friends, colleague and friends. Most people don't know much about Lyme's disease and the horrible effects of it.

    This board has a great group of people who really know how you feel and can offer great support and advice.

    I would recommend being tested through Igenex Labs in Palo Alto, CA. I know it's hard to come up with the funds for it but it is well worth it.

    I was short of funds at the time I got tested, so my LLMD just had Igenex run the Western Blot. It cost me $180. It was well worth it to know that I did in fact have Lyme's Disease.

     
    Old 08-08-2007, 06:41 PM   #8
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    Re: Lym's Disease??? please tell me what you think.

    Hi Nick. If you were bitten on the job, should your treatment be covered as worker's compensation? Just a thought.

    The Lyme doctors I know of who come highly recommended in CA are Dr. Raphael Stricker in San Francisco and Dr. Steven Harris who has offices in Nevada City, Malibu, Long Beach, and Palo Alto. I have heard that Dr. Christine Green in Los Altos is knowledgeable, but I don't know if she is.

    I hope you can get some answers soon. Keep us posted okay?

     
    Old 08-09-2007, 03:19 PM   #9
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    Re: Lym's Disease??? please tell me what you think.

    Nick.. Definately look into a good LLMD.. Get a appointment ASAP being some take several months just to get in.. There are lots of people on this board that can help you find one.. As far as my job.. They are great.. I have been out since april and they still have me on the payroll and still have medical insurance.. My Sgts, My Lt., PBA delegates, and all the P.O.s are very caring.. They call everyday, stop by and bring me stuff, Im the only female in my squad so its like I have 75 brothers out there, and they all baby me and are very overprotective of me...Im very fortunate.. It was like I hit the lotto when I got this job 30,000 people take the test every 4 yrs and only about 200 make it.. Its a great .. I know what your talking about as far as your finding out who your friends are.. except its with my "real" friends not the people I work with.. even some family members thought I was crazy for a long time.. If you have any questions just ask.. we are the same age and same occupation.. I know what your going through

     
    Old 08-09-2007, 10:13 PM   #10
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    Re: Lym's Disease??? please tell me what you think.

    Thanks for the advice! If any one knows how I could find a good LLMD in Arizona, I would be very greatful. I havn't found much in AZ yet.

     
    Old 08-12-2007, 04:03 AM   #11
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    Re: Lym's Disease??? please tell me what you think.

    I been following your post since i have similar symptoms, and NOW I think I may have Lyme as well...

    I will see a Lyme doctor myself , and will take this checklist with me... Hope you can find a doctor too... If you do a a search on the internet for Lyme something should come up....



    As part of your symptoms, have you had any of the following?



    1. Tick Bite (deer tick or dog tick?)
    2. Rash at bite site
    3. Rashes at other site
    4. Joint/muscle pain in feet
    5. Swelling in toes, balls of feet
    6. Ankle pain
    7. Burning in feet
    8. Shin splints
    9. Unexplained fevers, sweats, chills
    10. Unexplained weight change (loss or gain)
    11. Fatigue, tiredness
    12. Unexplained hair loss
    13. Swollen glands
    14. Sore throat
    15. Testicular pain / pelvic pain
    16. Unexplained menstrual irregularity
    17. Unexplained milk production (lactation)
    18. Irritable bladder or bladder dysfunction
    19. Sexual dysfunction or loss of libido
    20. Upset stomach
    21. Change in bowel function (constipation, diarrhea)
    22. Chest pain or rib soreness
    23. Shortness of breath, cough
    24. Heart palpitations, pulse skips, heart block
    25. Joint pain or swelling
    26. Stiffness of the joints, neck or back
    27. Muscle pain or cramps
    28. Twitching of the face or other muscles
    29. Headache
    30. Neck creaks and cracks, neck stiffness
    31. Tingling, numbness, burning or stabbing sensations
    32. Facial paralysis (Bell's Palsy)
    33. Eyes/vision: double, blurry, pain, increased floaters
    34. Ears/hearing: buzzing, ringing, ear pain
    35. Dizziness, poor balance, increased motion sickness
    36. Lightheadedness, wooziness, difficulty walking
    37. Tremor
    38. Confusion, difficulty in thinking
    39. Difficulty with concentration or reading
    40. Forgetfulness, poor short term memory
    41. Disorientation: getting lost, going to wrong places
    42. Difficulty with speech
    43. Mood swings, irritability, depression
    44. Disturbed sleep: too much, too little, early awakening
    45. Exaggerated symptoms or worse hangover from alcohol
    46. Any history of heart murmur or valve prolapse?

    Last edited by Nexis; 09-25-2007 at 02:34 AM.

     
    Old 08-12-2007, 07:30 AM   #12
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    Re: Lyme's Disease??? please tell me what you think.

    Hi Dial...considering your situation, it my be wise to travel out of state...Ticker mentioned CA, but may come along with another bright idea.

     
    Old 08-12-2007, 09:29 AM   #13
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    Re: Lym's Disease??? please tell me what you think.

    Quote:
    Originally Posted by ticker View Post
    Hi Nick. If you were bitten on the job, should your treatment be covered as worker's compensation? Just a thought.

    The Lyme doctors I know of who come highly recommended in CA are Dr. Raphael Stricker in San Francisco and Dr. Steven Harris who has offices in Nevada City, Malibu, Long Beach, and Palo Alto. I have heard that Dr. Christine Green in Los Altos is knowledgeable, but I don't know if she is.

    I hope you can get some answers soon. Keep us posted okay?
    Hi Ticker;

    I have contacted Dr.Harris' office in case it doesn't work out with the Dr. in the Tri-Cities. I thought you might like to know that Dr. Harris no longer has an office in Nevada City, Ca.

    Blessings;
    Ava

    Last edited by Avalou; 08-12-2007 at 09:30 AM.

     
    Old 08-12-2007, 09:50 AM   #14
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    Re: Lym's Disease??? please tell me what you think.

    HI Dial,
    I live in NM. My search for llmd only turned up a Dr. Warren M. Levin in Phoenix. However the only problem is when I recently checked his web site it looks like he has moved to vienna, Va. Maybe you can contact his office and they can give you info. He might know someone else in Az. area. If you do find anything out let me know. Thanks mc

     
    Old 08-18-2007, 02:43 AM   #15
    DIAL
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    Re: Lyme's Disease??? please tell me what you think.

    thanks for looking. The doctor did say I tested positive for Candida, said there was alot in me. I looked up symptoms of Candida infection, I've suffered from most listed. Any one know much about Candida?

     
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