I did not cut bangs, that is all new hair coming in after so much loss! It's coming in like that all over my head but it is more noticeable in the front as there's not enough long hair to hide in there.
At the end of every month I go over my symptom charts where I track the intensity levels and I have been blessed with a drastic change in one month. It is encouraging to look at my monthly charts to see how some of them have come down since starting treatment in January. This is important for me to do regularly because it is hard for me to see the improvements when I am still in pain daily and experience so many ups and downs.
Because of the drop in many of my symptoms Dr. C is starting to reduce a few antimicrobial meds as he believes we have mostly got the two co-infections I have, bartonella and babesia (an infection similar to malaria) mostly under control. The symptoms come and go a bit still so I am reducing them slowly and we will monitor how I feel as these infections have the potential to come back sometimes rather quickly. I am relieved as I was expecting to be put on another antibiotic or antiparasite drug as the one I was on I developed an allergy to and had to stop it. I am happy that isn't being replaced and instead am weaning off some others.
Because of the improvements Dr. C has asked me to start physiotherapy again very slowly. He said at this point in treatment physiotherapy done at the right pace can really help patients along in their recovery. Physiotherapy last Summer went horribly and only fatigued me more and put me in so much pain that I would spend up to a few days in bed unable to walk after treatments. Because of that experience I am very nervous and hesitant, but willing to give it a try again. I start again in a couple weeks.
The worst symptoms I am still dealing with are chronic fatigue and pelvic pain. The pelvic pain comes in different forms and has been the most severe problem area since the start. It has improved in ways from treating the Lyme and co-infections but it is the most stubborn. The problem is that there is another issue going on with a serious tailbone injury I had about five months prior to the pelvic pain starting. I had X-Rays done that show my tailbone is very out of place but the doctors I have seen haven't done anything about it. I get the impression this is because it is not easy to fix. This pain in particular has been quite bad again this past month. The physiotherapists I saw last Summer strongly advised me to push for more investigating and suggested an MRI so we can check for more abnormalities with more than just the bone structure as I suffer from such severe pelvic muscle pain as well (and more problems with my sacrum and hips, it's basically all such a mess), but I grow so weary from begging doctors to help me. It is not my strong point. If someone does not seem like they want to help me I would rather walk away than beg. Someone I know is helping me with this now though and I'm hoping to get in with a new doctor who will order an MRI, this way we can make a better treatment and recovery plan. But of course this will all take a lot of time to actually happen.
As for the fatigue, my Lyme doctor says we have a lot of work to do. I am still very limited in what I can do and get exhausted very quickly, and if I do to much, my symptoms flare. My energy levels have improved about 30% since starting treatment in January and he is not happy with that percentage. The hormone replacement we tried for adrenal function that he hoped would help my fatigue did not go well, I stopped it fairly soon after starting it due to nearly instantly worsening muscle weakness. He is now putting me on solid licorice root extract for adrenal function and is hoping that will help give me some more energy instead.
Kyle asked me to try get out of bed one day.... and I made it to the living room floor! At the end of July/beginning of August I caught a head cold and developed an allergy to one of the drugs I was on so I was out like this whenever I didn't absolutely have to be up.
The IV treatments of Glutathione and vitamin C continue once weekly. Kyle had a day off this week so he came along as it was an appointment and IV. I always feel so much better when he is with me for appointments so I don't have to do all the remembering and talking. He's also pretty good company. :)
We went to Grand Forks, ND for two nights and stayed at a Hotel with a pool. This was our first little holiday in two years due to me being too sick to travel. We are all very thankful this was possible this Summer! This is not easy for me, especially all the sitting during the three hour drive, but it went the best it could have gone. I had tolerable pain levels the whole time and some energy. It was much more refreshing than I expected it would be to get away and relax and get out of the constant treatment mindset. I know the boys had a blast and Brandon is still asking to go back!
I have made improvements. Still a long way to go, but bit by bit, day by day, I'm getting there. Celebrating the victories, no matter how big or small.
