I thought I’d go ahead and share my Lyme/Coinfections story and hopefully it may help those who are struggling with treatment or diagnosis. I know how many different approaches there have been and just wanted to share how I have been beating this disease. I hope to fully recover as much as one can relatively soon.
I began to get sick 2 and a half years ago. It started with random chest pains that grew into pain and heart palpitations. Then came the chills and sweating. This happened for a week when i went to the doctor and they ran some blood tests to be sure. All that came back was a positive D-Dimer test. I was immediately sent to the hospital for a CT scan to check for blood clots although they found nothing, I still felt something was very wrong. Months went by I began to get worse. Leg pains, headaches, difficulty walking, vision problems, fatigue, ear pain, dizziness, joint and muscle pain, neuropathy, stomach issues (lost 40 pounds from being unable to stomach food) etc. After being passed around from specialist to specialist as I’m sure many people here have i was admitted into the hospital by my primary doctor for Guillain barre syndrome. I had been losing my ability to walk and my doctor thought it was a strong possibility that that what was going on. They also sent me for a 2 hour MRI of my brain and spine to check for MS. My MRI came back fine and after blood tests for everything nothing concrete came back. Although my primary doc said she isn’t ruling out MS. Except 5 days after being released from the hospital I got a call saying my blood tested positive for lyme disease.
I was relieved finally a diagnosis. I had no idea what was ahead. I was referred to an infectious disease doctor (Avoid these doctors please) who went onto say that my test was not positive and whoever said it was mistaken. I then learned about
the very complicated and flawed testing system of lyme disease. So many of my symptoms pointed to it so I was very confused when he said I don’t have it and that its not chronic. My primary doctor at the time decided to treat me with a 21 day amoxicillin lyme treatment. It pretty much didn’t affect me but I didn’t get worse while on it and towards the end I felt slightly better. Once the 21 days were up she moved on saying you don’t treat it longer than that so its not it. I began to get worse soon after.
A few weeks later after seeing more specialists my legs got even worse with pain and i requested a Leg ultrasound and guess what they found DVT blood clots behind both my knees. This was probably the scariest moment thus far. I was sent to a hematologist and put on blood thinners immediately while still getting worse. The hematoligist found nothing abnormal on his blood tests for clotting disorders and said “I dont know why you have these and its very strange”. After that meeting he said just go on living your life. A rheumatologist found my c reactive protein was high but nothing else specific. I got to the point where I said to my primary I think the antibiotics may have been helping and she said she would not give me anymore. At this point I was a shell of the person I used to be and thought I was headed towards possible death. Unable to walk for more than a few feet without falling over and getting palpitations.
My primary eventually came to a dead end, after giving me gabapentin and cymbalta which just made me worse I moved on. I had come in contact with a friend who had been through everything I had and told me to visit his doctor and see if Lyme was a possibility still. I met with the doctor told them my whole story. They said they could help me, they were honest and said it could take some time. They told me they do not use any quack treatments just antibiotics and anti Malarials along with me taking vitamin C.
After 10 months with this doctor and long term treatment of abx and antimalarials that was at sometimes living hell I have started to feel better. It can seem like theres no way out of this in sight but there is. I still have very bad days but I’m having more good days than bad ones. The bad ones aren’t as viscous as they used to be. I know I have still have a good amount of time of treatment but I can tell ive made it over a significant hump. I encourage people who rule other issues out as I did to not stop treatment and to be smart about
how you treat a bacterial infection that can harm you long term.
The backlash from parts of the medical community can be harsh and misplaced. They are not accepting of treating a disease that has long term consequences because its not entirely accepted by all doctors. Disease take time and risk to discover and cure. Yes there are quack doctors but don’t let that stop you from letting your life crumble from a disease that you can come back from. A big part is finding the right doctor, pushing through the treatment and ignoring the insulting opinions some put towards this disease. I have lost friends who wouldn’t take the time to understand, but I was lucky enough to have a family and a sibling in the medical community who did. I lost valuable time in my life to fighting this disease. I am starting to feel somewhat normal again and wanted to let others know another success story so that it may help you
Apologies for misspellings and grammar issues.
Post Edited (ltc1225) : 8/14/2019 9:39:23 AM (GMT-6)