hope4acure
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| Rank | Member |
| Online Status | OFFLINE |
| Member Since | 10/30/2010 01:33 PM |
| Last Online | 01/09/2013 03:37 PM |
| A little about me: | I am the mother of 3 young men; married to my HS sweetheart; and just now recovering from Lyme disease after 30 plus years of "mystery illnesses" no answers,countless medical testing,huge medical bills, perplexed doctors(too many to count), and many many, wrong diagnoses. Just when I contracted Lyme disease, is still a mystery to us, although, I know I was Bitten by several ticks in Minnesota as a young girl. At that time, I developed a severe juvenile arthritis suddenly,had a red rash, high fever, and very swollen lymph nodes on the back of my head. All this came about within about 2 days of a hike through the woods where I picked up several ticks. We did not know they were the cause of my symptoms, and thought I just had a bad flu. When My fever and symptoms got so bad I could not move my limbs, My mom took me to the Doctor. He examined me, and then looking at my swollen glands on the back of my head, discoverd 3 ticks embedded in my scalp. He knew right away it was an infection caused by the ticks. He gave me a shot of PCN in the office, then put me on some antibiotic; but not long enough apparently. We think it was only 10 days of antibiotics. My Mom and I can't remember all the details, and we just did not know much back then about Lyme or co-infections for that matter to treat it properly. Fast forward to today... In my early 20's I developed severe endometreosis, which resulted in 3 surgeries by the time I was 26, and later a hysterectomy at age 32. By the Grace of God, I carried 3 children to term before that happened, albeit with much difficulty. With the last one, I was hospitalized with hyperemesis- I could not hold water down! I lost 10 lbs, the first term, then the last months, premature labor started and I was ordered on bedrest for the remaining 10 weeks. I guess the lyme is everywhere inside me, because It affected every system of my body. I currently have endocrine tumors on my pituitary and adrenal glands. These are being monitored for changes, and cause me some endocrine problems like Hypothyroidism. There are permanent scars on the inside of my bladder from chronic UTI infections that started sometime after that tick bite. I am doing much better with the bladder issues now that I have had treatment for the Lyme. The last 10, have been rough, I honestly did not think I was going to live long. I had told my family that if I died, please autopsy my body for Lyme. I was going downhill so fast it was scary. I was often hospitalized for abnormal heart rhythm issues, had abnormal EKG findings, and had started having much breathing difficulty, with severe asthma attacks. My asthma turned into COPD. I have developed the vision problems, that included floaters so bad it is like looking through black lace. We have lost count of the surgeries I have had over these 10 years, suffice it to say- I meet a large deductable every single year which really gets old. Being in debt because of medical bills is not fun. I often feel like a burden to my family because of this. I had adhesions built up in my peritonium causing blockage in my bowel, that was discovered and removed in '09. It was an appendectomy before that in '05 which ended up reguiring removal of part of my colon. Just had my gallbladder removed the end of 2011, and now feel better than I have in years! The Gallbladder is often full of Lyme bacteria, and causes the organ not to function properly. Previous connective tissue problems included ruptured and torn tendons in my leg, requiring 2 major surgeries 6 months apart. These were not injuries! I had nothing to explain the pain and burning that resulted in several tears in and around the posterier tibial tendon. After the first surgery to repair this ligament, there was a complete rupture above the area they had just repaired,and that episode somehow happened in my sleep! No doctor will admit this, but I am sure this was caused by lyme, because I know now it eats connective tissue! Yikes! I had been having severe migraine headaches that originated from my neck area, they last about 3 days, and the pain is in my spine along the nerve routes, alot like shingles. These past few years I had developed positive blood tests for Lupus, and had severe MS like symptoms(trouble walking, gripping things,spastic legs,speech difficulty, and stroke like symptoms. I had Guillian Barre episodes, severe cognitive impairment at times,memory loss, hearing loss, and eyesight loss with 2 developed cataracts in the last year alone, one on each eye. The ENT doctor told me at one point that I had an adenoid that looked like I had acute lymphocytic leukemia. He ordered MRI of my lymph nodes, because they were swollen after 3 weeks of antibiotics. I declined the biopsy, because by then, I suspected lyme disease even though I didn't have a postive test yet. My standard Lyme test was "indeterminate" at that time, so of course according to the CDC criteria, it was considered negative. That criteria almost cost me my life. Doctors knew something was very wrong, but could not find a diagnoses to fit, I had so many things going on at the same time. They didn't test me for Lyme with an Igenix test, until I pursued it, with the prompting of a neighbor who also showed up positive! Well, test was positive, for Lyme and several other co infections. Today, My spine is now stable, but I have many herniated discs being managed lumbar and cervical( Had 2 cervical surgeries in 4 years,resulting in a three level fusion) I have also developed permanent hyperreflexia which orthopedic docs think is a result of Central nervous system problems from lesions on my brain. They are calling it "Upper Motor Neuron" disorder. I also have lesions on the liver and the spine. I was told they were "incidental" findings until the diagnoses of lyme came about. Now the medical community is very respectful of the fact I have the positive lyme test. Not much is said, but there are references made, and some have been admitting it is the lyme causing all of these problems. In the last year, I have been on doxycycline,flagyl,nystatin Zithromax, ceftrex, a month of IV rocephin, along with so many supplements that I have trouble keeping track of all of them! I am currently off all antibiotics, giving my body a rest. I feel so much better, and have regained my strength, and stamina. My pain is nominal, and managed with Tramadol. I take beta blockers for my heart and BP issues. I use a pill box for all the supplements I take, to keep things functioning, and that helps, because some days my memory is still not good. It is really a learning experience being here on MDJ and reading what others are going through. I have had great success at finding answers to my health issues. I also have used the rescources given here, to fight and win a battle with the insurance company over payment for my IV picc line, which is a huge victory in LYME LAND! All of these struggles have actually made me stronger. Having a thorn in the side like this puts things in greater perspective for me about life and what is important, and gives me purpose to be an advocate for the lyme community. I do not feel abnormal, isolated, invisible, or ashamed of my mystery illness anymore; because finally, it has a name and I know am not a hypochondriac! Lyme disease is serious, and it is devastating so many lives because of misdiagnoses, and ignorance about this disease in the medical community. I belong to many support forums here, because the disease has caused so many manifestations and it is extremely complicated to sort out. I need alot of help, understanding what is happening to me and figuring out what to do about it. But no matter what disease we have or how we all got here, I am just so grateful for new friends, who understand, who really care, and who are on the same or similar paths. None of my healthy friends or family can possibly understand what it is like to have a chronic debilitating illness. This disease that has robbed me of precious time with my family and friends, and the many events I have had to miss because I was too ill to attend them. Without support, that can be very isolating and depressing. So thanks friends, it is good to know I am not alone,because of MD junction,where we can write about these health issues, find connection, vent and just and help each other in so many areas of our healing! |
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"To support others who have been infected, who seek a diagnoses and a cure. To make the world aware of this evasive, painful, insidious, deadly disease." |
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My Hugs
 | Just sending out a quick hug to everyone. I know the struggle can really wear you down, but there is always a light at the end of the tunnel...you can and will get better...should you fall...we will help you dust yourself off and pick yourself up...You are each and everyone of you worth it...Lots of love to everyone... |
| Sending hugs and prayers to you, my fellow Lyme Warriors.... Let us stand strong and united this weekend for Worldwide Lyme Disease Protest day... Let us speak the truth... the ugly, shocking, scary, unbelievable truth... Let us be heard... and Let us be healed. *hugs and prayers* purple |
| Hugs to all my fellow Lyme Warriors and Lyme Supporters :)~~~~~~~ Until the site problems are cleared up. ~~~~~Please use the GREEN REPLY button instead of the quick reply box when responding to a post.~~~~~ hugs and blessings, purple |
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enough light for the step I am on...
I am finding strength to deal with the insidious disease called Lyme; through others who have been there, are going through it, or just care enough to help me cope. This is my story.
I am finding strength to deal with the insidious disease called Lyme; through others who have been there, are going through it, or just care enough to help me cope. This is my story.
| Title | Date | Views | Comments |
| 8 months after Rocephin | 12/26/2011 | 354 | 2 |
| Finally some progress! | 06/02/2011 | 214 | 1 |
| newest developments | 05/01/2011 | 220 | 0 |
| my health history | 11/07/2010 | 195 | 0 |
My Health Topics Contributions
I started discussions in the following health topics:
antioxidant, autoimmune neuropathy, Chronic Lyme, coinfections, GI symptoms, Immune, Lesions, lyme treatment, Neurological, radiculapathy, UTI.
antioxidant, autoimmune neuropathy, Chronic Lyme, coinfections, GI symptoms, Immune, Lesions, lyme treatment, Neurological, radiculapathy, UTI.
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My Recent Posts
| cowden vs antibiotics | 11/29/2012 | ||
| hyperreflexia neuro symptoms | 11/29/2012 | ||
| Numbness on right side of body... | 09/03/2012 | ||
| starting IV rocephin/ gallblad... | 06/04/2012 | ||
| starting IV rocephin/ gallblad... | 01/01/2012 | ||
| Insurance battle won! great ne... | 08/16/2011 | ||
| Question about spine pain | 08/04/2011 | ||
| Insurance denies coverage afte... | 08/04/2011 | ||
| oral manifestations of lyme | 08/04/2011 | ||
| bleeding and pain | 08/04/2011 | ||
| bleeding and pain | 07/27/2011 | ||
| oral manifestations of lyme | 07/27/2011 | ||
| oral manifestations of lyme | 07/19/2011 | ||
| bleeding and pain | 07/19/2011 | ||
| Insurance denies coverage afte... | 06/16/2011 | ||
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