I am on Day 45 of proper nebulization, Day 75 overall. For those of you that didn't read a previous post on that, I was nebulizing wrong for the first 32 days or so and half my Lyme-N was blowing out in a mist into the air and not getting into my lungs, so I have to re-do the first 30 days. So on Nov. 20th I will be done at 90 days! It has gone by surprisingly fast and it didn't interfere with my regular routine at all. I haven't missed a single day.
I got back a few days ago from a week long camping/hunting trip in the Silvies with my family. All three of my sons, husband, mom and dad were there. It was a big experiment of sorts for me, because while I was there, I stopped taking my Adderall for a whole week. Just "cold-turkey quit" taking it on Tuesday, October 27, the day we left. It's a 7+ hour drive and I didn't want to feel antsy and restless while trapped in the truck all day. I felt really, really good all week. I was pretty shocked, actually because I was expecting to go back to feeling exhausted, unmotivated and just dreading everything. I didn't have a single hint of any sort of withdrawl or side effects and in many ways, felt better than when I am on Adderall. I was relaxed, but was in a very positive, good mood. I could still focus on what everyone was talking about and have great conversations. Often my mind is just completely blank and it's difficult for me to converse, but that was not the case at all. I also took one of my little clay sculptures with me and -- another shock-- I really wanted to work on him. I felt a sense of well-being and contentment and yet motivation that I haven't felt in a long, long time.
I normally rarely feel motivated to do anything without Adderall. It has been my lifeline for the past 18 months. I count on it for my shot of energy and focus to kick start me out of bed and do daily chores. So the big "But" for feeling so great on this trip is that I was totally in a different environment and on a different schedule. I work at home and so I live at work. I never have a moment off or away. There is constantly something that needs doing and I put pressure on myself to get it done. Even though camping is not my idea of a vacation because it is extra work, my brain was on vacation. No emails to deal with, no resins to pack or ship, no bookkeeping or bills. My sleeping and eating patterns were totally different than normal during the trip as well. I went to bed much earlier and didn't have my late-night cravings for salt and chocolate. At home, I have these insane cravings late at night. I was able to sleep until my body was ready to wake up in the morning; No alarm to rudely wake me in the middle of my REM sleep :)
So, the take-away is that I probably don't need the Adderall any more, but I'm not sure. Old habits die hard, and when I got back home and into my regular routine, I went back on it. The reason: I usually go to bed very late; about 1:00 am. I just can't sleep and I get a shot of 'awakeness' and energy late in the evening that can go until 2-3 am. I take Benedryl about 10 pm to sleep, and when that hits sometimes my brain overpowers the sleepy feeling until it goes away. Then my alarm goes off at 6:20 am to get the boys up for school and I feel like total crap and I'm out of it because I have only gotten about 5 hours of sleep. By the time they leave for school, I'm awake enough that I'm not sleepy, but I still feel like total crap and can't do anything but go back to bed and read. I get sleepy again and I normally would sleep until 11-am to noon. I wake up, again, feeling like crap because I have not gotten a full, continuous night's sleep and can't function. That's been my life for the past several years without Adderall. The only way to break that cycle is to take my Adderall about 9 am and then it gets me up up by 10:30 or so and I can start my day at a reasonable time. Otherwise, it's 1 pm before I can really get functional, and then I'm still only at about 20% and I get nothing done all day.
Soooo.... I need to be brave and just pick a day and stop taking it again while I'm home and see how it works out. I really think the Lyme-N is kicking in pretty strongly due to my week-long experiment and I am feeling really good.
My biggest--and really only--complaint right now is pretty severe body wide joint and muscle pain. When I went back on antibiotics for what I thought was a bladder infection a few weeks ago (I think it was, because the second round stopped the burning pain and it has not come back at all) the joint and muscle pain really took a turn. It's throughout my body, but I notice it especially in both my elbows right now like tennis elbow. It's so painful and came on overnight in such a way that I am extremely limited in certain arm movements, especially trying to lift and move things. During camp, there were many things I just could not do as far as lifting during packing and unpacking. This is not the first time antibiotics have caused this. It's been a constant roller coaster the past several years with joint and muscle pain.
Nine months after I was diagnosed with Lyme and went on antibiotics I suddenly had a day where I felt like I had been hit by a train. I had the most severe and encompassing muscle and joint pain ever. Even though I had arthritis, muscle and joint pain, muscle weakness, cramping and ticks, etc with Lyme, this was 10 times worse. It was directly related to the antibiotics in three possible ways or a combination of the three: 1) I was herxing really bad 2) The antibiotics caused major leaky gut 3) Ammonia build up in my body and joints.
As far as the Ammonia build up goes, I used to have severe night sweats. I still do, but not as often. One day a few years ago my husband said that I smelled like pee when he was leaving for work and I was still in bed. I had just read an article about ammonia build up in joints and brain from Dr. Jernigan. I can't find the original article, but below are links some of his others about ammonia. I purchased his Neuro AntiTox II years ago and it did help with joint pain. I also no longer have the 'pee' (ammonia) smell, so I think I sweated most of it out, thanks to my night sweats and infrared sauna.
http://www.jernigannutraceuticals.com/Ammonia.html
http://davidjernigan.blogspot.com/2010/12/alkaline-brain-dietary-concerns-in-lyme.html
http://davidjernigan.blogspot.com/2015/05/eliminating-ammonia-toxicity-in-lyme.html
By the way, my husband did get a spike elk. There was a huge herd of about 300 elk, but they were pretty content to stay on the private Silvies Valley Ranch that covered most the area we were hunting. Frustrating to sit and look at them in that massive pasture, count antlers and not be able to hunt them why they laid there chewing their cud!