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|Betty Gs CHRONIC LYME Story|
|Written by Bettyg|
|28 June 2007|
I was beginning to show early-onset Alzheimer’s disease symptoms when I couldn’t remember where I had parked one day, and decided to pursue this since other strange things were happening as well.
Then I went to a support group meeting listed in the newspaper but didn’t have anything on it showing it was a LYME meeting. They talked of their symptoms, which matched mine exactly. They then talked about a new blood test, western blot igm and igg, tested at Igenex Labs, Palo Alto, California.
I had an Igenex blood test, WESTERN BLOT IgM & IGG, which needs to be tested for ALL 16-protein bands...all strains of lyme disease! In USA, only 3 diagnostic labs do this testing: IgeneX in Calif., MD in New Jersey, and Stoneybrooke, NYC.
I was diagnosed with: diabetes 2 in 1-04; chronic lyme disease 7-12-04; and sleep apnea (I stop breathing when sleeping) and restless leg syndrome 12-04; and now 4 life-threatening illnesses with heart problems starting to show up now in 2007.
"You look perfectly healthy...not sick” said one of my family members. Oh what they don’t know and can NOT feel of the pain and fatigue inside me! If I were in a wheelchair, used crutches, a walker, or a cane. I would have a visible disability. “It’s all in her head”.
Only those of you going through this know how much pain and anger you’ve caused us with your thoughtless comment on our “invisible” illnesses! We don’t want sympathy; we only want your support, compassion, and someone to talk to when our “flare-ups” are bad.
I have been blessed with my supporter/ husband, Jack, and close friends. I have had chronic fatigue syndrome, CFS, since age 21, Feb. 1970, after getting mononucleosis; and still have 34 years later. We’ve been married 32.5 years, and he has NEVER known me healthy; I want to go into remission so he can get to know the “real” me before my chronic lyme changed me!
I was diagnosed with fibromyalgia syndrome, FMS , 11 years ago but have had at least 30 years. I then begin having many other symptoms: A person has fibromyalgia if they have at least 11 of 18 specific tender point painful sites. I have all 18 of 18 tender points.
My pain never goes away! I use a heating pad and/or frozen cold packs on my neck, shoulders, lower back, thighs with bursitis, and knee to help numb my pain.
Do you have any idea what it is like to go to bed night after night, year after year, and get up just as TIRED as when you went to bed? Plus I wake up frequently urinating 4-8 times. I can’t reach level 4 sleep healing our injuries and rejuvenating our systems.
I have sound-proofed our bedroom to eliminate noise from the neighbor’s driveways, slamming of the car doors, racing engines, dogs barking, piano playing, and bouncing of all balls.
I was clinically diagnosed with major depression and anxiety, and put on antidepressant that helped my chemical imbalance causing temper flare-ups, and caused me to gain 25 pounds, which caused my type 2 diabetes sooner.
Difficulty concentrating or performing simple mental tasks. I now point at things since I can’t think of words, abdominal pain, bloating, and alternating constipation/diarrhea (irritable bowel syndrome) as well as irritable bladder syndrome causing urinary urgency/frequency; super sensitivity to light (reflections/glare) and to sound (loud mufflers).
I also have extreme sensitivities to be “startled” and multiple chemical sensitivities: perfume, after shave, hair spray, cigarette/cigar smoke and on clothing really bad; office and cleaning products; diesel fumes; some foods; etc.
Finally after 34 years, I have discovered it was my LYME disease causing extreme PAIN sensitivity to lights/glare/reflection and to sounds/noise! I have seen 40-50 Drs./specialists to get a correct diagnosis!
SS Disability doesn’t acknowledge LYME/FMS/CFS as work disabilities and fights to DENY each claim although our treating specialists all state, “patient is unable to do substantial work now and in the foreseeable future”.
July 1, 2005, I was finally approved on my 2nd SSDI claim after 5 years of hell. As I typed this up right now, I have almost 3 full drawers full of my medical records of a 4-drawer letter size cabinet due to the 5 years I fought to be approved for SS disability benefits! I could go on and on about this process, but won’t waste my breath!
April 2006, I went out-of-state to a Southern Minnesota LLMD, and NO, not Mayo Clinic since they do NOT have LLMDS there. The MD did complete body lab testings on me and found many other things wrong with me too.
The major findings were that I had food allergies: gluten to wheat and rye, and case-in to cow’s milk, cheeses, egg whites, and garlic! So now to exclude those things from my diet and also I have diabetes 2! It’s a very limited menu of items to chose from and not get sick of eating same things daily!
March 26, 2007, I had left hip replacement surgery since my hip was down to bone on bone. Our local McFarland Clinic in Ames orthopedic surgeons refused to operate on my due to “feeling uncomfortable” since I have chronic lyme disease and they know NOTHING about it plus my other illnesses!
So it was performed at Mercy Hospital in Des Moines by surgeon Dr. Mark Matthis, Iowa Orthopedic Center.
Mark’s office was remarkable; they gave me a 1” binder full of information about the upcoming surgery; everything what to expect; and many exercises to start doing promptly and later during the recuperation period.
During my 1-hour surgery, Mark knicked my bone when putting in the hip stint into my existing bone. He told me, “you have soft bones, and they are of a woman 20 years OLDER than your age of 58!!
So I’ve got to be very careful since my Grandma spent 5-7 years in bed with a broken hip and osteoporosis.
While in the hospital, my left knee got really swollen, was running a HIGH temperature, and my ice packs were thawing in 30 minutes vs. 2 hours! They didn’t notice anything at that time, but on the day they were going to discharge me, I brought my high temp knee to their attention.
A Physician Asst. took the HUGE needle to my knee without anesthetic, and withdrew fluids all around it in a 360-degree area! This hurt like hell; so very painful that I just cried and cried out in pain! It took them about 2 hours to do 4 tests on liquids removed; NO bacterial infection in my knee! “We’ll have you out of here in FIVE minutes”, and they did considered I was completely NOT packed for going on!!
That night my left knee kept getting hotter, and I called Ames’ Homeward Health Care, HHC, service. Maria, the RN assigned to start me with HHC, called me back. I told her about what was going on with my knee. It was after 10 pm then, and told me she’d see me 1st thing tomorrow morning, but thought more about this; called me back and came over for her 1st visit! She too thought this was a BLOOD CLOT reaction.
So she had me call the surgeon’s office Monday am; we couldn’t get in until Tuesday pm. PA asked if they’d done an ultrasound on me while I was in hospital; NO; they never mentioned this.
So he sent me to Mercy to have this done. Technician started pushing down firmly on my groin area, and I told her I couldn’t handle the pressure; it was excruciating PAIN! She tried twice to use ultrasound pushing down firmly to hear blood vessels, but I couldn’t tolerate the procedure, and told her to stop immediately.
She called the Drs. Office; RN talked to me about did I know how serious a blood clot is? “Yes, I know; my husband’s Dad died of one in his leg going to his heart after a railroad train accident”!
Yes, I know how serious this is, and I’ll take my chances vs. going through this procedure and your killing me while doing this! For 2-3 long weeks, my knee was still swollen, but the high temps were finally going away for good!
I had HHC for one entire month paid for my Medicare from my being approved for social security disability insurance benefits! It was wonderful since they retaught me how to do the basic things in life again.
They taught me many things, and I taught them many things since I was using a walker with a carrying pouch on the front of it. It was a WIN-WIN situation for the 5 of us!
May 18, 2007, 7 weeks after my hip surgery, I began walking with a cane vs. the walker; I’m very unsteady but determined to overcome this so I can go walking on a regular basis like I used to for exercise and pleasure enjoying people’s flower gardens!
Paralyzed vocal cords; FYI, they didn’t have me standing correctly,• so they came up with I have paralyzed vocal cords! I had to come back months later to retake these x-rays!
You have lupus, and walk-in MD walked out the door without explaining• what it was NOR did he give me a brochure discussing what lupus was. I was diagnosed 3 different times for this, but never treated.
During my 1st endoscopy, the test of putting tube down into• esophagus, dr. discovered something but couldn’t determine what it was. So 6 months later I repeated this test showing the same thing! During a future surgery to remove a colon polyp and my appendix, I had the surgeon go up to the area in question, and check it out. He discovered it was a piece of “FATTY TISSUE”!
I’m sure there were more over the years, but these are the ones that stand out in my mind.•