I hope you have all been relatively pain free these days.
Tomorrow is the last day of “Lyme” awareness month so I figured I should post something lyme related. Several weeks ago (3 weeks ago maybe?) I remember seeing a chronic infectious specialist (that supposedly treats lyme disease) and I remember going into specific detail about why I was 150% positive I had lyme. (The camping trips, the rash, the symptoms etc). Anyways, I remember him saying to me that there is no such thing as neurological lyme disease or chronic lyme disease. The irony is that
during this meeting, I was very twitchy all over! My head would not stop tremoring and my arm kept jerking. I remember him repeatedly asking me if I’ve seen a neurologist and me reassuring him that I have and that I didn’t MS. The meeting was pointless and ended with him saying to me, “even if you do have lyme disease there is no treatment available. So there’s nothing I can do for you”. I brought my mom with me this day, because I knew that the doctor wouldn’t actually be willing to help treat my chronic lyme infection and so I wanted the moral support, but I also thought it would be good for my mom to see this for herself. But when I looked at her after the doctor said there was “no treatment” my heart sank, because I could tell she was crushed and was holding back tears. I remember remember joking to the doctor and saying “Sall good the worst that can happen is I die, no biggie”, to try to make a point in a morbid way. Treatment should not be withheld from a person because of politics. Smh. Telling someone there is no treatment when in reality there is, seems bananas to me.
When people generally think of Lyme disease, they don’t think of the neurological symptoms that ‘can’ come with it especially if a person has gone untreated for a long time. I personally find these to be ‘annoying’ and sometimes freaky when they creep up on me! A lot of times people get misdiagnosed as having Parkinsons or MS because of this very reason. Lyme can cause seizures, tremors, blackouts, twitches and jerks, and various cognitive issues. For me, my neuro symptoms come and go, but when they do show up they usually stick around for at least a week or more.
So I guess in a nut shell this is a rant and post to educate people about LYME and to let you know that you CAN get the help you need to recover if you think you have lyme. There is treatment available and the symptoms of lyme overlap so many other disease which makes it hard to diagnose. But if you have gone to see doctor after doctor with no diagnosis, this may be something to look into depending on your symptoms.
Check out this link if you may suspect having lyme:
If you do not have a bulls eye rash that does not mean you don’t have lyme.
If you have a negative ELISA test that also does not mean that you don’t have lyme.
God Bless yall and keep fighting 🙂
Sending out hugs.