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Hello and thank you for taking the time to help me!
I have been fighting against the unknown for almost 2 years now. I would like to have the opinions of people who have been through Lyme and who might be able to recognize the evolution of the symptoms; although I am aware that they are different in each person.
-4 years old: got bitten by a tick but my parents saw it and brought me to the hospital. I had antibiotics treatment for 1 week (only)
-13 years old: doctors discovered a cyst in my left breast after it exploded (quite painful!)
-14 years old: again hemorragia but from my liver that is found full of adenomas (tumors) - surgery removed the exploded adenoma (similar to cyst) or the equivalent of more than 50% of my liver
-2013 december: diagnosed with polycystic ovaries although it seems to me that it happened more or less at the same time as the Bali episode that I tell later.
Here is a summary of my "illness story" :
-August 2012: trip China for 3 weeks and last week to Indonesia, in Bali
-Bali, on the last day of the holidays I was at a birds' zoo when I started having an indescribably painful headache: everything was bothering me especially the light and the sounds. It felt as if my head was growing bigger as the pain was getting more sore. I felt literally in another world, as if the person walking was not me.
This headache lasted for 2 hours when I went back to the car, sat down and 2 seconds later I felt like a rocket from my right foot to the top of my head coming up very fast and getting all my right hand side of my body NUMB. My heart started pumping fast as well, for 1 second I couldn't speak .... ==> I had many symptoms of a stroke so we went to the hospital in Bali
-The hospital said I was fine, I must have drunk too much coffee and it has affected my brain hence the headache. We keep going our trip, arrives dinner time, at a restaurant: I could not EAT! Each bite was making me incredibly dizzy with nausea, i felt incapable of thinking straight: extreme version of "brain fog"
-I was extremely tired, could'nt feel my right hand side, including my tongue, eye, my leg I didnt know where exactly I was walking on!!!
-These symptoms continued for 1.5month! I went to the hospital back in China, did some physiotherapy as they saw on a x-ray that my neck muscles were extremely tensed and the curve was inverted, as if i had been in a car accident!! I didn't have fever, no rash or not that I can remember of. I had constant headaches and symptoms similar to a meningitis, with migraines with visual auras.
- Since then, my symptoms have been evolving. After these first 2 months, I started feeling better in terms of the fatigue and headaches. I can now say that my symptoms have been more or less the same for more than one year since the first headache/numbness epidode.
-Yet, the symptoms are wierd since one day I am feeling good enough to live normally but the next day I am terrible in pain with muscle stiffness as if I had jut run a 10K !!
-I also always have pain in a L shape on the right side of my back neck and shoulder (similar to myofascial pain syndrome).
-Right side body numbness, which changes in intensity within the day and depending on days,
-some pain in ankles sometimes and knees,
-lots of hormonal disorders even though the blood test didnt reveal anything (can't have sex as either too dry or horrible vaginal discharge)
feeling of constant urinary infection: burns when peeing and urine unusually dark in the morning
-my eyes have been playing with me since the beginning of all of this: I have a speical glass on my right eye otherwise I feel very sick and dizzy, nausea.. ==> again on the right side! is it all related? (seems to me!)
-To sum up, I feel like I am 80 years old on my bad days and on my good days, I try to do as much as I can but then the illness comes back even stronger before I had time to slow down...
Doctors and "treatments":
-I have seen many different doctors, and been diagnosed with fibromyalgia, "all in your head psychosomatic" and most of the times NOTHING, they just dont know and send me home to relax and do yoga!
-I have done the ELYSA test for Lyme and tested negative once 5 days after the Bali episode and once 1 year after, but I know the test is not reliable but what else shall I do?
-I have been following the "distressing" methods of relaxation and slow exercise but it has proven extremely difficult and soo useless towards my symptoms especially the numbness, still unexplained!
Hypotheses and questions:
-if I have Lyme, is it possible that I caught it when I was 4 years old and the treatment was not effective as I have read in many sources that the minimum treatment should be of 3-4 weeks?
-I have also read a connection between lymphatic adenomas and Lyme: has anyone heard of this as well?
-Is it possible that my immune system fought the Lyme infection for the first 2 months but not completely which would explain why I have been feeling better from the 3rd month on? Like can it be that I have some rest of bacterias all over??
Thank you very much to anyone who could enlighten me with their experiences as I have read many testimonies but did not find any answer with regards to my LAST question especially!
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