Well the trip went okay except for 1 night but I'll explain that later. We left on Sunday about 1:30PM after finally seeing little Ava. I even got to hold her which is something I was afraid to do with the super stiff numb hands. We grabbed a bite to eat a few miles down the road and just ate in the car because I didn't want to have to try to maneuver the walker already. I am glad that we planned on 2 days after the late start. I was so afraid to tell Rhonda that we were leaving but she was actually fine with it and insisted. Maybe motherhood will change her attitudes.
We got to Muskogee about 4 1/2 hours later and decided to stay the night. Again more fast food (yuck) and just kicked back and watched TV. We both went to sleep at about 10:00PM and actually slept pretty good and hit the road about 10:00AM. We got to Springfield early and decided to check on Dr. Crist's office. There was a Days Inn on the same road but about 4 miles away. We decided that would be the easiest to get back to his office from. We checked in about 2:00PM and I kind of panicked because you had to walk in the hotel to get to your room but I just took it slow with the walker and it worked out okay. There was a McDonalds in walking distance so you guessed it, another burger.
The only first floor room they had only had 1 bed which I hate in case my legs start twitching but I figured the night before went pretty well so it would be okay. A little later the people upstairs from us checked in and no joke the kids raced on the floor above us non-stop for over 3 hours only stopping to be jumping off the beds.
Around dinnertime they got real quiet and we had a rest. We ate dinner pretty late, McDonalds again but at least I had a big salad. I don't care if I see fast food again for 5 years. We usually never eat it. Around 8:00PM the kids were back and loud as ever. I did my hair and took a bath figuring it would be better to be all but ready the next day for the 7:30AM appointment. The noise upstairs was still going on at 10:00PM but not as constant. The later it got I told Ronnie to call the desk but he didn't and finally at 11:20PM I did. I kick myself for not calling earlier because I wasn't even back to bed when it stopped. Of course the damage was done and I was freaking out. I absolutely could not get to sleep and felt like I kept waking Ronnie up. Believe it or not at 5:00AM I finally dragged the bedspread around the side of the bed and laid down on it on the floor just to rest. I figured by the time I got to Dr. Crist's I'd probably throw up on him.
A nurse checked us in about 15 minutes early and we went through lots of stuff and some little pre-test type measures which she recorded on the computer for him. Dr. Crist finally came in and introduced himself and seemed very business like but I finally decided he wants to "get done" what he needs to and then he chit chats. To sum it up he definitely says it is lyme and he didn't see the need for any more testing unless it was for peace of mind. He agreed that there may be babesia but will treat for that regardless and after examining me and something about the way my legs reacted to him tapping my knees with the mallet he thinks there is bartonella too. I ended up doing the lyme test and the hypercoagulation too. He said it would be fine down the road to do any of the others through my own GP but some did need to go to specialty labs. He had me do an eye test which I failed miserably. I'm sure his patients on here know what I am talking about. I told him I can see out of the eye that had a problem a few years ago but there is not as much light and he presecribed a sulfur drug (eye drops) to help. That would be great if it works.
I have not read all the paperwork (there's a lot) but he wants to start me on Nystatin of course but he isn't all that sure there is as big a problem as with others I think because of all the detox I have done but not absolutely sure. The prescriptions he gave me were for clindamycin, quinine (for babs), Biaxin XL, plaquenil. I can't even tell when or how much right now because it is on one and off another or mix or whatever. I will definitely need a chart. His nurse was quite concerned about sleep and wanted to give me ambien but I told her it doesn't work and that kind of shocked her. She talked to him and he precribed trazadone, (my daughter thinks it's a muscle relaxant) and told me to add melatonin. The way I react to meds I bet I will be able to take 1/2 the med and no melatonin and that will do the trick. I will just have to play with it until it doesn't affect me the next day. It will maybe help the twitching too. The nurse said there should not be a problem filling these meds even though he is out of state but I need to check with the pharmacy since it is Texas High Risk insurance. If there is a problem one of my other doctors will work with him. By the way he said he doesn't usually use rocephin because of the liver problems that I had but uses claforan. I think Romans uses this. He even asked me if I still had my gall bladder after using the rocephin.
We left the office and drove right back and got home about 5:30 or 6:00PM. We decided that on the next visit we would go to Tenkiller Lake and rent a cabin (1/2 way there) because the follow up won't be at 7:30 AM and we could drive 3 hours there and 3 hours back to the cabin after seeing him and maybe just relax. That would make the drive back home not as long too. I need to plan ahead and save a few dollars. I would rather stay in a cabin in the woods than a hotel on a busy street. And I can cook my own food too. We actually stayed there a lot of years ago with the kids for a week. It would still be winter too so the rates would be better. Maybe in 4 months I will see enough improvement to enjoy this.
Ronnie asked his nurse about time frames and she said anywhere from 6 - 18 months. I hope she is right. We are both glad we went and will try this route and hope for improvement. Dr. Crist seems to be very well schooled on lyme and I hope "he" will be my magic bullet. Of course on top of all of his precriptions he is very much into detox, nutrition, and supplements. He seems to stock a lot of stuff but recommended checking the health food store for even cheaper things. He at this point after feeling my abdomen doesn't think I am clogged (of course I've been doing tons of detox) but that my intestines aren't working the way they should and therefore I am not digesting my food and that is why I can't gain weight or muscle. He said to get a combo of digestive enzymes and that should help. I have to say here that my nurse was Mary and she's great. I don't know who you have had cj, Romans, or Heather but I hope I get her again next time.
I went with the question list and he pretty much had answered my questions with his presentation so I didn't ask any. He liked having the history I typed for him and helped him to decide what to start with he said. He said he would never order a spinal just for lyme because it only had the 5% diagnosis rate Ticker talks about. I asked why if mine was clear they said I had MS and he basically said the doctors had tunnel vision. Exactly what I have said all along. He recommended a Dr. Rea here in Dallas for testing and that is so funny because that is the same doctor my homeopathic recommends for testing too although I have never used him. He also talked about the dead bone in the mouth and so forth but to me that is down the road. I don't know if I will end up on another IV at some point in time because what little I have glanced at that seems to be towards the end of his protocol. Maybe the finishing touch. I just hope it isn't as expensive as the rocephin. And of course we will be in another year so another deductible. I wish there was a "sigh" icon I could push.
I guess that's all for now but felt encouraged when I saw a little blurb from cj that she is noticing some improvement. Way to go cj!!! Now if we can just bring Romans on board and get Heather better too. When we go back in Feb/March we might have to consider Ronnie being tested because he said as he reads everything some of it sounds like him.
He may be like dorkdad and have it but be functioning okay. If he gets sick I better be healed because he is much more demanding than me. I guess I will spend the next couple of weeks familiarizing myself with all the paperwork. In fact Mary said Ronnie and I should each read it once and then read it again. Dr. Crist said he wished he could make it an easier read and I told him he should put it on a CD. Maybe I planted an idea.
I apologize for how long it took to write to you all because I know you were waiting to hear from me but Rhonda showed up yesterday with Ava at 2:30PM and never left until after 9:00PM. The baby is only 5 days old.
I guess things have really changed since I had my kids. The baby is not the child I have always wished on Rhonda.
She slept almost the whole time they were here and just a good little baby. Figures! I wish I could scan in her picture and show you all how cute she is. I hope everybody is having a good day and we can all breathe a sigh of relief because I am "legally lyme"! Boy, the things we wish for.
PS Cj, I asked Mary about constantly tinkling on my hand when I wipe and she said that is just another symptom. At least it isn't just age.
She also said the hearing problem I have is related and should improve as I do.