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Mar 26
2008

Initial background story to set the stage for recovery

I am new to the Lyme Disease Support Group. However, for the past week I have been readingmany of the posts. During the summer of 2001, while living in Parkville, MO, I pulled a tick off of my abdomen. 3 days later i found myself critically ill from a blood infection. Oh and a light circular rash around the area where the tick was attached. I had saved the tick in a zip lock bag and brought it to the doctor. He informed me there was no such thing as Lyme Disease. Then he added, if my illness was caused by Lymes Disease then the treatment would be the same as for the blood infection. So I took 2 weeks of Doxy and got better. Or so I thought. At the time I was a serious fitness buff. I enjoyed weight lifting, karate, and soccer as both a coach and a player. So every time I went to the doctor with a new illness with strange symptoms he would look at me and instantly diagnose that I was perfectly healthy. Then in 2005 we lost our 5 month old grand daughter to, SMA, a congenital form of MD. This was the stress that weakened the immune system enough for the lyme war to rage. The initial symptoms were extreme joint pain, fatigue, brain fog, migraines, and chills.

 

There were several other major illnesses during the prior 4 years between the tick bite and this major illness. I had just never experienced bone pain like that before. Well the good doctor reffered me to a RA specialist. He prescribed Prednisone. This worked for a couple of days. Then he prescribed an even higher dose. Please note that at every instance of a meeting with doctors over the ensuing 4 years I asked if this could be Lymes Disease. In every instance I was told "no." Well it appears many on this board have already run through this drill. I was tested for RA 3 times each time the outcome was the same, negative. Yet, the good doctor would just increase the Prednisone dose a little more. I felt like I was dying. So we took a new job in Minneapolis to be closer to our son, his wife and our new grand daughter. once again the new RA specialist increased the Prednisone dose and added Methatrexate. Now it felt like my life was coming to an end very quickly. I am an executive, as such I had to travel to Vail for our corporate board meeting. However, I was damn sick. At night, I slept in my sweat shirt, sweat pants, wool socks, and winter coat, under the bed covers from both beds in the room. During one of meeting held during the day I had an optical migraine for 45 minutes while the CEO was writing notes on the note board. We don't need to mention the vertigo, head aches, and extreme joint pain. All I wanted to do was go home and die. However, here is where the story begins to get better.

 

At this time my wife was panicked about my health. Happily she is my angel. It just so happens, she interviewed for a DH job with a local Dentist who just that morning was at a dental conference and the speaker mentioned she was diagnosed and treated for RA only to get worse. Then she was rightly diagnosed with Lyme disease and with proper treatment doing very well. I don't know how Suzie, my wife, and Patty, her new boss, and now a dear friend to both of us met. But it changed our lives. Suzie got on the internet that afternoon and found a Lyme Disease specialist in MN. My wife explained how critically ill I was and they were able to see me the day after I returned home from the Board meeting. The first appoint lasted 3 hours and they took 17 tubes of blood. But I had a name for what was wrong. Just like reading all the posts on this board. It was like I was handed off to someone who understood and could treat the Disease. That was 15 months ago. I have been on Doxy and Cefuroxime Axetil for those 15 months. I went from near total disability to 90% well. The doctor believes in ABX and lots and lots of supplements, far infared sauna, rest, stress reduction. Early on I mentioned the unbearable joint pain and FM. Well my doctor tested me for food allergies. At 53 years of age I found out I was allergic to Gluten, Dairy, peanuts, and a few other minor items. please note:The elimination of Gluten and Dairy has eliminated all joint pain and FM sx. There was another supplement, "Proboost", that helped bring the immune system back. "Needless to say the Prednisone and Methetrexate were eliminated immediately. Here the doctors were killing my immune system when it need to be strengthened. By this time I had to see a neuro opthamoligist for the double vision, cataracts, and optic nerve damage from cupping. I could not drive due to the vertigo and optic migraines. All work outs ended with the first Prednisone prescription 2 years ago. The Bakers Cyst was not fun. My Thymus, Adrenal Glands and Liver work well again. The new manifestation of the LD includes ringing in the ears, vertigo, slight tiredness, slight joint pain, a little brain fog, muscle cramps, and extreme nerve tingling in right shoulder, arm and hand. The trigger event for flair up was our trip to HI for our 20 wedding anniversary. Unfortunately, there was too much gluten in the food. Please check for food allergies if you are fighting LD.

 

I found this board while I was looking for answers to the latest flair up. I will have a pick line inserted this Wednesday and start the IV Doxy. We are also going to pick up the Far infrared sauna next week. Wish me luck. I just want to lift weights, get back into karate, enjoy my grandkids, and share a long happy, healthy life with my beloved angel Suzie. Thank you all for sharing your journeys. May we all beat this thing.





Comments (1)Add Comment
Best of luck to you for a full speedy recovery!
written by Caroll, March 28, 2008
I certainly can relate and sympathize w/ your experience.
I am starting to think I will never recover. I certainly do not live the life I once lived. I was diagnosed w/ LD in 2004, had months worth of oral antibiotics, they didn't work. I had a picc line placed, ( in the crease of the arm not the side) I wasn't responding well to the penicillan prescribed. Four weeks into the treatment, My picc line broke! It was sucked in to my blood stream, I went to the Hospital that Inserted it (Newton Memorial) and 2 1/2 hours later the Hospital told me they don't know what to do, or how to handle it! So I was sent to Morristown Hospital, I took my time on the way knowing I'd be there a while. stopped for coffee and a snack. I couldn't feel it floating around, and for some reason I wasn't to upset. By the time I got to the hospital a team of vascular surgeons charged me. Now I was scared, x-rays showed the PICC line was not any longer in my arm, instead... it was through my heart and in my abdomen. Thank god it was recovered with out many cuts. It was retrieved through cutting a small hole in my neck enabeling the doctors to grasp the 40 cm's! OK, now I need another PICC, I was reluctant but did it, and went back to the same hospital. Why? I guess I had faith. Plus I wanted a better quality of life. So I went along with the 2 nd picc insertion, 4 more weeks. Tests showed negative, But we know how that goes. Tests are not accurate and show false negatives and the like. So I did feel better for a few months, and that was it. I was diagnosed with EBV- Epstein Barr Virus, MONO, CFS - Chronic Fatigue Syndrome and tests showed no LD. Well I was beside myself. I could barely get through my day, I left at 6:00AM and arrived home from work at about 7:00PM 5 days a week. I could barely stand on my own two feet when I arrived home. Fatigue worse than ever and it continued. I still had to function, work, shop, clean the house, cook, take care of my 15 year old Siberian Husky and so on. Well I couldn't continue, My doctor convinced me to take a MLOA medical leave of absence. I did just that. Now the tests are showing Lyme again, I sought a LD specialist in Morristown and have a 3Rd picc line. This one different than the first two. It is in the side of my arm. SO, I have lost my job, was terminated after being on MLOA for 2 1/2 weeks. I pray that I one day can live a healthy, active life as I once did.
I wouldn't wish this on my worst enemy, not that I have any! LOL
I pray for Health that I once had! Best of luck to you & Me.

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