← Return to Diagnosed with Chronic Lyme Disease: Anyone else?

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@krisjb1

I want to talk about the Hell I have endured since 1992. I found a tick in the back of my elbow. I listened to the tv broadcast. Cure Lyme with a little antibiotic. NO. The dr. said I had a virus. My husband had to support me all the way up and down the stairs to get to that appointment. Since then I have had so many issues including apnea. I am not overweight, so why? But I can live with that. The absolute worst thing is the complete relapses I have 2X annually. Leading up to it I know what is coming because I have migrating pains, dizziness, slight headache, painful legs and feet, but I continue to forge on until I get a headache that is so bad it cannot be remediated. Sometimes I cannot move from my bed because I am too dizzy. I cannot drink or eat. I sleep 24X7 with an ice pack and cannot be left alone. When I get help to get to the bathroom I retch, but of course there is no food or water in my stomach. I just got out of bed to join the living this morning after 11 days in bed. I feel so blessed because at 74 years old I fear that each time could be the last. There is no hope. The NIH has done some work with an antibiotic that works. Hygromycin A, but it is not available yet. It may be years. Lyme specialists are expensive and cannot guarantee any positive results. Insurance provides no coverage for their fees. I have never tested positive, but I have been sick since that engorged tick infected me. I have taken antibiotics and haven't gone that route for at least 15-20 years. I am seeing a dr. today and asking for meds. I don't know how sympathetic he will be. I will print out a page to show an antibiotic that might be helpful and if given to me I will take it. I am in limbo far too often because I cannot count on being mobile any particular day. Making plans to travel away from home is a challenge. I try to make believe I will be OK. If I did not do that I would be confined to the area around my home feeling more or less like a prisoner of this disease. It is stealing the time I have left and shortening my stay here on this planet.

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Replies to "I want to talk about the Hell I have endured since 1992. I found a tick..."

@krisjb1, I can't imagine how difficult it has been for you to deal with Lyme disease for so long. I also didn't know how many people are affected by Lyme disease until I saw this Mayo Clinic article from this past June.

— Mayo Clinic expert speaks of significance of Lyme disease uptick:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-expert-speaks-of-significance-of-lyme-disease-uptick/
There is a good website for learning more about the condition in case you haven't seen it already.
— Welcome to the Lyme Disease Association Website:
https://lymediseaseassociation.org/
Hopefully you will get some help and relief when you see your doctor today.