My Story

Discussion in 'Lyme Disease Archives' started by coon32185, Oct 16, 2008.

  1. coon32185

    coon32185 New Member

    Allow me to introduce myself my name is Jeff. I am 23 years old. Up until two years ago, October of 2006, I was a very healthy young man an aspiring bodybuilder. I still try to be healthy but it seems like something is holding my body back. No matter how much I eat or lift I cannot gain weight.
    All of a sudden in October of 2006, I came down with flu-like symptoms. I went to my family practitioner complaining of clogged ears, floaters, muscle weakness, chronic fatigue, headache, and joint pain all over my body. I thought that it was The Flu. He thought that I had mono and swabbed my mouth for a mono test. The test came back negative. Two weeks later I returned to his office complaining of upper sinus infection and trouble breathing. As the symptoms increased he prescribed many different kind of antibiotics. Each antibiotic I took, I experienced weird reactions that he said does not happen when you take that particular antibiotic medication and said I was making them up. For example, I would hallucinate, tingle all over my body, and have severe joint pain, it was so bad I thought I was dying and losing my mind. Then he said I needed to get a job to keep my mind off things. I was a full-time student taking five classes. Finally he referred me to see an ENT and Psychiatrist. He referred me to the Psychiatrist because I requested every possible test. He accommodated me. Nothing came back positive. Every test was perfect. The doctor said that I should not be having the problems that I was experiencing. I began to panic in my mind as of what am I suppose to do, because I had no clue as what to do.

    First, I went to the ENT, thinking maybe a specialist could fix the problem hoping that would end all my troubles. The ENT then prescribed heavy doses of antibiotics. Each prescribed antibiotic gave me horrible reactions: whole body tingling, major panic attacks, severe left shoulder pain and left elbow pain so severe that I thought I was having a heart attack. The only antibiotic I did not get reactions on was Levaquin. As the infection got worse the ENT ended up doing sinus surgery. But prior to surgery he recommended I see a Psychiatrist. At that time I was in no shape or form to deal with a surgery of this nature. I went to the Psychiatrist and explained all my problems. He put me on lorazepam, two a day, and 100 mg seroquel to sleep at night. Shortly after this I was ready for the surgery. I was put on IV antibiotic for the surgery. The day of surgery was the only day that my ears felt as if they were draining. I had to go back for a follow up after the surgery. But my ears were still clogged. I continued to see floaters, and additional symptoms. My ears remained clogged to this day. The CT scan of the ears and sinuses was normal.

    As I continued having problems, I contacted a Chicago physician. I gave him my medical history. He suspected Lyme or Candida and immediately put me on nutritional supplements and doxycycline hyclate, 100 mg twice daily. I started taking one a day to work my way up because of the Herxheimer reactions. I was on this medication for more than 8 weeks. I started to improve, little by little. I reached a point to where I felt somewhat normal, but yet so far from normal. It has been so long since I have felt normal so I did not know what normal felt like. To this day I still do not know what normal feels like. At that point, the doctor was going to switch me to ABX but held off to see if I continued to improve. From that point he treated me for systemic Candida. It seems I have come around in a full circle and the symptoms are NOW worse than ever.
    Over time, I have seen numerous physicians and have been diagnosed with fibromyalgia, chronic fatigue syndrome, and psychiatric disorders. My current symptoms are:
    • Rashes on body parts (thighs)
    • Long red lines of raised rash disappearing and recurring
    • Unexplained hair loss (when I am taking a test I can count about 20 hairs on my paper or when I am reading the newspaper)
    • Headache, mild to severe
    • Pressure in Head behind ears
    • Twitching of facial or other muscles
    • Stiff or painful neck
    • Jaw pain and stiffness (TMJ)
    • Sore throat, clearing throat a lot, phlegm
    • Double or blurry vision
    • Increased floating spots (that look like worms)
    • Pain in eyes
    • Oversensitivity to light
    • Flashing lights/Peripheral waves/phantom images in corner of eyes
    • Decreased hearing in one or both ears
    • Plugged ears
    • Buzzing in ears
    • Pain in ears
    • Oversensitivity to sounds
    • Ringing in one or both ears
    • Diarrhea/Constipation
    • Upset stomach (nausea or pain) at one point was taking GERD medication (Protonix)
    • Bone pain, joint pain and swelling
    • Stiffness of joints, back, neck, tennis elbow
    • Muscle pain and cramps
    • Chest pain or rib soreness
    • Unexplained chills
    • Unexplained shaking
    • Burning or stabbing sensations in the body
    • Fatigue, weakness
    • Pressure in the head
    • Numbness in body, tingling, pinpricking
    • Poor balance, dizziness, difficulty walking, lightheadedness, wooziness
    • Mood swings, irritability
    • Unusual depression
    • Disorientation
    • Feeling as if you are losing your mind
    • Over-emotional reactions
    • Crying easily
    • Too much sleep, or insomnia
    • Panic attacks, anxiety
    • Memory loss, Confusion, difficulty in thinking
    • Difficulty with concentration or reading
    • Going to the wrong place
    • RAST allergy test – all negative
    • Flashing
    • Daily popping & cracking of joints
    • Speech difficulty
    • Stammering speech
    • Loss of sex drive
    • Unexplained breast pain
    • Testicular pain
    • Unexplained weight loss
    • Extreme fatigue
    • Swollen lymph nodes (neck and groin)
    • Unexplained fevers/drop in body temp.
    • Symptoms seem to come and go
    • Pain migrates to different body parts
    • As of October 2006 "flu-like" illness, after which I never felt normal
    As a child, I was always in the forest. Our backyard is a forest. Daily one can see deer in the subdivision.
    It seems on a daily basis the floaters in my eyes look like worms get continually worse. I have been to the ER many times but am assured nothing is wrong and I am experiencing a panic attack. I sometimes experience jerking movements throughout my whole body. I feel that my skin is crawling and often twitching. When put on prednisone by the ENT my left knee and elbow swelled up. Most of the symptoms occur on the left side of my body. Initially I had severe temple headaches.
    I have been put on pages and pages and pages of medication in which none have helped just made things worse. My joints pop and crack daily. I also get this symptom where it seems someone is turning the lights on and off real quick along with the daily hallucinogens I see.
    I can provide you with a list of the numerous prescribed and OTC medications. None of these helped me.
  2. mshvan

    mshvan New Member

    Hi. I think what most people would tell you is to seek out a Lyme-literate medical doctor, and to get the Igenex tests for lyme and related co-infections.

    I was so strongly discouraged by doctors for 2 years, that it was impossible for me to have contracted Lyme here in California--that I didn't even get myself tested. I have been tested for every thing else under the sun at this point.

    Just this last week, I was diagnosed with Lyme (which, you will discover, if you have not already, is a tough diagnosis, with many controversies and difficulties in testing and treatment). I also tested positive for Babesia--which I think is a much more reliable test--and it's rarely found in the absence of Lyme.

    Anyway, I do think it's important to rule out possible 'more serious' (lyme's serious) diagnoses--the usual things, like cancers, endocrine issues and the like.

    But do yourself a favor, don't wait any longer (like I had done). Find a lyme doctor and see if you can find some answers there, and hopefully some help for yourself.

    I was also very athletic and laid very low by this illness. Whatever it is.
  3. Daisys

    Daisys Member

    I noticed you were put on one ABX only. The spirokete that causes lyme disease has more than one form. A lyme literate MD would put you on 2 different ABXs to kill both active forms. Otherwise the bacteria just changes form, and the one ABX becomes ineffective.

    The best way I know to quickly find a LLMD in your area is to go to lyme.net flash medical questions, and ask there. Tell your story there too. You will get a private message, so the doctor's name is not made public, for their protection.

    Another idea is to go to ILADS site, and print out the compiled treatement plan under the name Burrascano. Maybe your doctor would be willing to use the information there. It's the "bible" for treating lyme disease for those who belong to that society. They are there because they are in the medical field and have lyme themselves, or someone they love has it. They are truly motivated to cure lyme in their patients.

    I hope you get help soon.
  4. mrdad

    mrdad New Member

    Did any of your Docs do a Lyme Test including a Western Blot?

    I would think that if one suspected Lyme, they would have had

    you tested b-4 putting you on Doxycycline anti-botic?

    You might suggest to your Doc that an Igenex Lyme test be

    done ASAP. Sorry that you are not doing well. Are you

    in contact with your Doc about ongoing problem?

    Get back with us,
    MRDAD

  5. pw7575

    pw7575 New Member

    Hi Coon32185,

    I am so sorry to hear all that you have been through. There is nothing more awful than being sick and not getting help from doctors AND having them tell you that you are crazy. It is so frustrating and I am sorry that you have experienced this.

    I agree with everyone here that you should get tested for Lyme through Igenex. It does sound like Lyme is a possibility for you based on the symptoms that you have and what you are experiencing with the antibiotics. From what others have said it seems that when you have Lyme antibiotics can make you feel worse before you get better. But you need to see a lyme specialist (LLMD) to be sure that is what is going on. I would find a Lyme doctor and get tested as soon as possible. You need to have a Lyme doctor because no other doctors are going to be very helpful with this.

    I have read that you need to be off of the antibiotics for a certain amount of time before getting tested for Lyme disease. I think it is 2-4 weeks or something like that. So you may want to keep that in mind. You don't want a false negative.

    Hang in there and let us know what happens!

    Take Care,
    Pam
  6. mshvan

    mshvan New Member

    I wanted to add something, reinforcing what Pam said.

    It's about doctors suggesting psychiatric help.

    When I first got sick, I was in very good shape. A problem I had, I would see my doctor and some specialists, and they'd do a complete blood count and it would come back largely good--and I got this reaction "you're in great shape, there's nothing wrong with you, go to therapy"

    And I went to therapy, too. Because I had never felt so sick and in pain in my life. But you know, I kept getting sicker.

    Mental and emotional issues are often part of these types of illnesses--or certainly, in my experience, BECOME an issue. Being sick, no answers, the loss of things in your life, worries, uncertainty--also, the fact that some illnesses themselves help to cause depression.

    But with that said, if your body is telling you something is wrong, no matter what any doctor says or if they don't take you seriously--you have to try to fight that and keep going.

    I guess what I'm saying is....if doctors start pointing you towards psychiatric treatment, but you know and feel something else is going on, don't let it get to you. Keep pushing.