It has been a long time since I have written a blog and the only reason is that I fail to take the time. But here I am filling you in on our lives right now.
It has been a little more than a month since Kevin has been taking a new medication. He started taking this medication after we got the Unspecified Somatic Symptom Disorder diagnosis. The medication that the Psychiatrist suggested is in a liquid form so Kevin could have a little more control over the dosage and it would not have any fillers or binders in it. This medication does seem to be affecting Kevin positively even in very small doses, and it has some bad side effects too. The prescribed amount he is supposed to take is 2.5 ml a day but we have found that about 4 drops (which is considerably less) is the perfect amount for him.
It has been a long trial and error period to try and figure out what works for him. The medication makes him completely crash for several hours so he had been taking it at lunch and then was in bed from 2:00-5:30 most days. He had tried taking the medication before bed but he did not sleep well then, so we kept moving forward the way we had been, slowly increasing his dosage as we went. He would have an alright morning, a horrible afternoon, and then a fairly good evening. Since then we cut back the medication to see if that would work better.
Lately we have been trying just 3-4 drops in the evening about 2 hours before bed and it does not seem to interfere with his night like it had before, but as always there are a million factors that play a part and we are unsure of what is playing the biggest role right now. Doing it this way seems to be giving him better afternoons.
Tuesday evening Kevin started to feel sick. This was different from his "Lyme’s not feeling well". It seemed that he got a bug and by Wednesday it was very apparent that he was sick. This always plays a big role in how he feels as illnesses hit him harder than most people. On Thursday he did not take a nap in the afternoon which we think is a good thing and it seems that taking the medication in the evening might be the new way to go.
I said there seem to be some benefits to Kevin’s health with this medication and I want to make it clear that we still do believe that Kevin has Lyme disease and that it is not all just mental health. When you have an illness as intense as Lyme disease it starts to play with your mental health. It is hard to be sick all the time and stuck in the apartment by yourself all the time. It is hard to feel so bad and then a couple of hours later feel like you can go party it up. It is hard to have the world see you as a functioning healthy human but feel so bad behind a closed door.
Something else we have heard about is that the Lyme bacteria can cause the body to be in a constant fight, flight, or freeze state. In Kevin’s case, it seems that his body is frozen. We are hoping and praying that this medication will help Kevin’s brain to unfreeze so to speak and begin fighting the bacteria once again.
As you possibly saw when you first got onto our site we are hosting a Lyme Awareness Fundraiser. I will try to write a blog about that event and how we got there next week so keep your eyes out for that one and please RSVP if you would like to come.
