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|Author:||Cog1st [ Mon Feb 18, 2008 11:17 pm ]|
|Post subject:||Gayle's Story|
Ticked off by Texas ticks!!
I have symptoms in 35 of the 38 symptom groups on Dr. Burrascano's list of Lyme symptoms. Hooray for the 3 I don't have. I've probably had Lyme disease for at least 47 years. My first exposure to ticks was on our wooded land 90 miles NW of Houston, Texas. I was 7 or 8 years old. My brother and I played under the yaupon bushes and in the fields, returning to show Mom the "spiders" all over our legs.
She knew they were tiny ticks, but in the 50's nothing was known about Lyme. Every week-end we had encounters with more ticks. I don't remember a rash [??] I do remember numerous times during my childhood when I had severe neck and leg pain with no apparent cause. Had mononucleosis [Epstein Barr] at age 17; severe headaches, fatigue, and insomnia with it; had a homebound teacher for 3 months.
Endometriosis and painful periods began around age 19. Around this time had an abnormal liver reading on blood test, fatigue, and dizziness. Graduated from college, got married, and began teaching elementary school in Texas. Had many bouts of flu, stomach "flu," headaches, neck and back pain, fatigue. In the early 80's I had one year of diarrhea, back pain, dizziness, low grade fever, severe fatigue, missed 30+ days of school; lost 25 lbs. Diagnosed with Irritable Bowel Syndrome. As part of my recovery, I forced myself to take modified aerobics classes and worked out on weight machines at the local gym. It helped me get my strength back, but it took a long time to recover. Began wearing prescribed orthotics to relieve foot pain. My podiatrist ran an arthritis profile – negative! Migraine headaches got to be a real pain! I had 2-4 migraines per month, and they usually lasted 3 days each time. This was before Imitrex or Zomig was introduced to the market.
Had more bouts with muscle spasms and pain in shoulders, neck and back; had trouble getting out of bed more mornings than I care to remember. Diagnosed with Fibromyalgia around '84 [a cop-out diagnosis!]. The muscle and joint pain never really left after that. My husband and I decided not to try to have children. I didn't think I could handle anything more.
In the late '80's the menstrual pain became unbearable at times; had trouble getting a good night's sleep. Periods were 2 weeks long with excessive bleeding. Hysterectomy in '90 resulted in clinical depression, severe bladder pain, and increased fatigue. Began seeing a neurologist for the migraines and depression. Somehow got back to teaching with anti-depressants, Esgic for migraines, and lots of ibuprofen. Began doing step aerobics when I could for the next 4 years until knee pain forced me out.
The bladder pain began to intensify, with frequency of urination up to 30 times per day. Spent way too much time in the bathroom!! Diagnosed with Interstitial Cystitis (a painful bladder disease) in '92. Continued teaching, but with great difficulty. I had alot of trouble keeping up with the job (I received "exceptional" ratings, but it always seemed to take me twice as long to grade papers, prepare lesson plans, and get things done as it did for others, as I had a terrible time concentrating).
I never could understand how everyone else seemed to get things done so much faster and easier than me! Every year my memory problems got worse; my students definitely noticed. It was so humiliating. Having been an honor student myself, I couldn't find an explanation for it. I decided it was a result of all the medications I was taking for the bladder pain and frequency, plus the continuing problem of not getting enough sleep, and the fact that I was now 40+!
In '94 I was forced to retire from teaching after 21 years of service. As painful as this was emotionally, it was physically a relief. I couldn't take it any longer. My treatments with DMSO, heparin, & other medications instilled in the bladder did nothing for the pain and frequency.
Following a surgical procedure on my bladder [which was supposed to relieve some of the pain], I was suddenly hit with increased bladder pain, extreme weakness in my legs, unbearable back pain, muscle and joint pain galore, continual migraines, and of course, fatigue. It was during this time that I was treated with steroids, Lodine, and methotrexate for the intense pain.
I'm glad I was able to get off the steroids and methotrexate when I did, because I know that the steroids and methotrexate can make the damage from Lyme disease worse. I'm told that it also causes Lyme tests to be less than accurate. I do believe that it was Lyme that damaged my bladder [among other things]. One thing that really helped me cope was massage therapy. You have to find someone who knows how to handle someone in constant pain. I continued taking Lodine for 6 years. It was the only way I could keep going. If I didn't take it, I couldn't function. The pain and fatigue was too much. After retirement, I started my own business making costume jewelry. There were many days and weeks when I was unable to make jewelry because of muscle spasms and pain in my shoulders, neck, arms, and hands.
By 1999 I was 30 lbs. heavier than when I retired. I went on a low carbohydrate diet after I found that I felt so much better when eating that way.
In March of 2000, a naturopathic doctor suggested that I might have an intestinal yeast overgrowth [candida albicans]. This is VERY common amongst Lyme patients. I began taking herbs to correct the situation, and went on a sugar-free, yeast-free, very low carb diet. I lost 22 lbs. on this type of diet. After 6 mo. on this regimen I had more energy, the brain fog had lifted some, and my stomach distress was greatly improved.
However, if I cheated on the diet, I was immediately fatigued and achy. I even got off Celebrex for pain, and began taking 4000mg of MSM a day for pain. I asked my naturopath if perhaps I should see a regular physician and get prescriptions for Nystatin and Diflucan since my recovery had plateaued.
He said it wouldn't hurt to try. He suggested a doctor in a nearby city. He said this was the only doctor in our area that knew how to treat the intestinal yeast problem. He said other doctors would look at me like I had fallen off the planet. So I go, and within 5 min. this doctor is talking to me about Lyme disease. I looked at him like HE had fallen off the planet!
Only by the Grace of God did I land in the office of a doctor who has researched and treated Lyme disease for more than 12 years when I had NO idea I might have it! Thank you, Lord! I was hopeful that at least we could stop the progression of the disease. It's hard to believe that no other doctor ever thought to run a test for Lyme. I've probably seen more than 20 or 30 doctors over the years.
Further testing showed that I also had babesiosis, another tick-borne illness. This disease requires different medications than those for Lyme disease and it is difficult to eradicate. I believe it was the babesia which caused my tachycardia, feeling faint, dizziness and night sweats.
The next 3 years of treatment were some of the worst days of my life. I was in so much pain all the time that I couldn’t believe it was possible to be that miserable! The first year I was in constant pain. I began to see a lot of improvement in my condition after the first two years of treatment. It was a long and difficult road. I’ll spare you all the details!
Then I was bitten by another tick in March 2005. After two months of antibiotics, the illness seemed to be beaten into submission!
Following that, my gall bladder problems [which first surfaced in the fall of 2003] became really severe and I had to have my gall bladder removed in July of 2005. Eleven days after the surgery I was hit with a lovely hospital infection and ended up in the ER with high fever and a heart rate of 140. I remained in the hospital for 6 days, being pumped full of antibiotics again….ugh!
How do you get through all this?? These things are vital:
Eat healthy. [NO sugar]
Seek out alternative therapies.
Exercise when possible.
Focus on the positive.
Never give up in your quest for the right doctor.
Believe you can get well!
PRAY and don't give up on yourself!
To all my Lyme friends: Hang in There!!
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