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It all started in 2012 with numbness in my right hand. It was gradually getting stronger and stronger, Lhermitte's sign appeared (back then I didn’t know it had a name). After a while, numbness in my right leg started to be noticeable. It kept progressing, new symptoms were appearing, but doctors kept sending me from one to the other, not knowing what to do with me. In desperation, I went to ER in the hospital, barely waking, with multiple neurological symptoms, hoping somebody will finally figure out what is going on.
They released me with MS diagnosis and directed to the MS specialist doctor to figure out treatment. The doctor saw my results, and decided to check me for Lyme. LUAT test came back positive. We started ILADS protocol, and I was fine for a few years. Symptoms started coming back, in the meantime the doctor that treated me for Lyme died, so I'm going to other ones, and their approach is like this: "after this amount of antibiotics you've taken there is no way it's Lyme anymore, we need to start treating you for MS asap if you don't want to end up in the wheelchair soon". So I started Tysabri and was progressing, so they changed me to Ocrevus, and progression continues. At the moment I can’t walk on my own anymore, just barely with a cane or trekking poles, my favourite and most effective tool to get around is the Alinker.
I got used to the idea it’s MS, and was trying to believe that doctors know what are they doing (the only thing that kept me wondering was that my MS was different from what people kept describing about their experience on MS related Facebook groups).
Then Dave started telling his story in chapters, and when he announced the Lyme revelation it gave me a healthy kick in the butt to finally take care of my health personally, because it seems that in the case of Lyme it’s the only way.
I've sent my blood for the whole panel of Lyme diagnostics + coinfections here: https://wielkoszynski.pl/choroby/borelioza/
Results came back, and confirmed I had Lyme.
As there are no Lyme literate doctors in my area of Poland, I managed to get an appointment for the 2nd of September in Gdansk in a medical center specialized in Lyme: https://swietylukasz.pl/en/oferta/ly...ronic-illness/
On the 5th of September I’m scheduled for the next dose of Ocrevus, but I’ve decided already to resign of it (I still have moments of doubt, but I think it's just the clever marketing of MS drugs providers paired with MS doctors that for last few years were convincing me that the treatment they provide is the best thing that could happen to me)
As I started to google the Lyme and misdiagnosis on Polish internet, besides seeing a light of hope for my health, I'm getting more and more pissed off at how clueless some doctors can be. I hope our stories will help to fight this obviously broken system.
Thank you Dave for the inspiration!
They released me with MS diagnosis and directed to the MS specialist doctor to figure out treatment. The doctor saw my results, and decided to check me for Lyme. LUAT test came back positive. We started ILADS protocol, and I was fine for a few years. Symptoms started coming back, in the meantime the doctor that treated me for Lyme died, so I'm going to other ones, and their approach is like this: "after this amount of antibiotics you've taken there is no way it's Lyme anymore, we need to start treating you for MS asap if you don't want to end up in the wheelchair soon". So I started Tysabri and was progressing, so they changed me to Ocrevus, and progression continues. At the moment I can’t walk on my own anymore, just barely with a cane or trekking poles, my favourite and most effective tool to get around is the Alinker.
I got used to the idea it’s MS, and was trying to believe that doctors know what are they doing (the only thing that kept me wondering was that my MS was different from what people kept describing about their experience on MS related Facebook groups).
Then Dave started telling his story in chapters, and when he announced the Lyme revelation it gave me a healthy kick in the butt to finally take care of my health personally, because it seems that in the case of Lyme it’s the only way.
I've sent my blood for the whole panel of Lyme diagnostics + coinfections here: https://wielkoszynski.pl/choroby/borelioza/
Results came back, and confirmed I had Lyme.
As there are no Lyme literate doctors in my area of Poland, I managed to get an appointment for the 2nd of September in Gdansk in a medical center specialized in Lyme: https://swietylukasz.pl/en/oferta/ly...ronic-illness/
On the 5th of September I’m scheduled for the next dose of Ocrevus, but I’ve decided already to resign of it (I still have moments of doubt, but I think it's just the clever marketing of MS drugs providers paired with MS doctors that for last few years were convincing me that the treatment they provide is the best thing that could happen to me)
As I started to google the Lyme and misdiagnosis on Polish internet, besides seeing a light of hope for my health, I'm getting more and more pissed off at how clueless some doctors can be. I hope our stories will help to fight this obviously broken system.
Thank you Dave for the inspiration!