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.
So glad you are back. I can't imagine the drive. It had to be hard. I am blessed with 45 min trip to Jemsek. Hope this puts you on a fast road to lyme free (we can all hope) I smile when I think of AVA. Grandchildren are Gods gift to us. Mine have helped take my focus off lyme at least at times. 4 yr old Hope comes over to cheer me up by telling me jokes. You have that to look forward to. Lets all look forward to the good days in our future.
Thanks for the good thoughts. I will only have to make the trip every 4 months or so and there is also a phone consult option if needed instead. I am still trying to plow through the paperwork and need to have Ronnie take the prescriptions in tonight. Then I have to figure out what I start with and go from there. The trip wasn't that bad and I think the nerves kicked in because of the mobility problems and stopping for anything. My legs just got antsy. I do give a lot of credit to cj and Heather for doing the trip to and from in 1 day each way. Heather's drive I think was 4 hours more than mine. As long as this works though I think we would all walk to the appointments. I hope I will soon be posting some good news. Or maybe even some herxing.
So GLad you made there and back in one piece!! Yeah!
I Am glad you liked MAry she was my nurse also and very nice. I just spoke with her today. I am herxing so severly on the IV claforan. it hurts so bad. !!! (While i was jsut writing this and hurting, my little boy, Chad, who is 6 told me "you know what , Mommy, you are the greatest mommy in the whole world". well if that don't make the hurt go away i dont know what cna do it.!!!
I am proud of you for using the walker, Maureen, I know that was very hard for you to do. It is hard, I am used to the wheelchair know after 2 yrs, but let me tlel you when a young "hottie" walks by my husband it is really hard to be sitting in that chair . I do hate it so very much. But it is only TEMPORARY!!!! and we have to do what we have to do to not make our body hurt worse. so I'm very proud of you for using the walker.
I am pretty slow with the walker because it doesn't have the wheels so it is stop and go. Everybody I "run into" just smiles and nods and some ask what happened so it isn't so bad. I have to tell you that I used the wheelchair 2 different times to go and see Rhonda in the hospital too and was okay with it. I kind of said to myself that it is like you have to have make-up on when you go someplae even if it's out of town and the people will never see you again so who cares. With the way Rhonda talks I won't be at that hospital again anytime soon to see another baby so who cares. I am glad you had Mary she is such a sweetie and had to grab me when I caught my foot on the examining table and she's holding me up saying don't worry I won't drop you. She didn't either. I agree with Dr. C that you are really herxing and that's good but doesn't feel so good now. Is it constant or a few days long like it should be? You have no control on the amount you take when you are on IV except to skip some days completely. My protocols say that if as you add more meds and you develop this or if you develop that then go back to what you took the day before instead. I guess that means you are going to have some herxing sooner or later. I will get meds tomorrow and start as soon as Ronnie picks them up. He is downstairs reading everything again because it is just too overwhelming for me all at once even though I really don't consider myself to have brain fog. I may be crying to you next week about how bad I feel so be prepared. I hope things start to calm down for you and don't worry about your meds being stopped like Shanna's because you probably have different insurance than her. There have been people on here who were on the IV for 6 months and the insurance was okay with that. Don't stress about something that might not happen.
I missed you too and figured if anybody could tell me how to handle the kids upstairs at the hotel it would have been you.
I hope I am on the right track and feel Dr. C is pretty knowledgeable about lyme. I like the fact he is into supplements and some alternative stuff although I feel his real bent is towards antibiotics so here we go again but at least with somebody who knows what they are doing not just following the CDC guidelines.
Rhonda loves the blanket and my sister sent her a pink Moses basket to carry her in too. Ava had on these little pink and white striped sock/booties yesterday trimmed at the top with fake fur. I told Rhonda all I could think of was the munchkins in the Wizard of Oz. I'm telling you this kid is way to calm and sweet for Rhonda but I actually do see some changes in her for the better. Maybe if I philosophize (is that a word?) then I would think this is exactly the child I wished on her to make her more caring instead of punish her with a brat. That's a better thought.
I'll keep you posted when I start my protocols and will probably be looking for some sympathy when it makes me feel like crap so be prepared. I hope you have gotten your Borrelogen again and you have perked up. By the way if you call Prime Time tell them Maureen told you to call. Most of them know me by name but Dot the manager is a real good friend now. When I first got sick she gave me her home phone number and actually called the day before we were leaving for Missouri because she hadn't heard from me for a while. A very sweet little old lady which is what the place is run by since they are all volunteers.
Ha, you make me smile about the kids upstairs! I would have handled it the same way, maybe I would have called the Manager early. Maybe I would have went upstairs and knocked on the room with all that noise and perhaps said something to the parent(s). Who knows?
I think you are on the right track and I look at it this way, try the antibiotics and if that doesn't work, you can always go the alternative route as Dr. C. is familiar with that.
So happy Rhonda loves the blanket, I know you worked so hard on that and it wasn't easy for you with your hands.
Ava sounds so adorable!! Life is funny, maybe Ava was brought into this world for a reason..... not only to have a beautiful life, but to change Rhonda's life and her way of thinking.
Of course you will have my support if you start feeling horrible, you have supported me and others for so long and now it's your turn my friend.
As far as the Borrelogen, I didn't order it yet (had a horrible week). I need a part for my heater as I do have Oil, but no heat. It's going to get cold here real soon so it's a toss up for the heater part or the medicine. The nights are already really cold here and my heart goes out to my dog.
I will call Prime Time and mention your name... I have many knitted items stored away and I would rather have the money then let these items sit in my closet.
I am looking into refinancing my house so I can make the cottage legal. I would need my baby brother's signature which he won't give, but a lady told me that if I don't pay my mortgage that my brother's credit will get screwed up so I can scare my brother into signing those papers (I don't like to do that but I don't have a choice). My brother's name is on the Deed of my house since I didn't qualify by myself when I bought my house, he never put any money into my house, I did that, just his signatures.
so glad you're back and you are getting the answers you need. i was thinking about you before you left and wanted to wish you a good trip but i had surgery on my broken wrist last fri and could not work on the computer or do much of anything for several days. i get the cast off next tues and start PT next fri. this has been painful and in addition to strong herxs which never to seem to let up, i've had quite a few weeks.
i know how you feel about negotiating the hospital halls, as i seem to think about this where ever i have to go. falling and breaking my wrist has not helped my confidence in this area. i too have to swallow my pride and get a cane (the quad kind that can stand on it's own) this week. i have hardly been out of the house except when my husband has taken me to dr, etc. i am looking at the cane as a temporary situation and is better than ending up with another broken body part. i think dealing with lyme is more than enough to deal with. Please know i am right there with you!
congratulations on having Ava. i am sure she will bring such happiness to your family.
Maureen, I am so glad you survived the trip, the fast food, wild kids, the walker and all! You did it! And more and more, I just love Ronnie!!
Thankful too that your experience with Crist's office was a positive one... I hope the meds for eyes, sleep, lyme, do the trick and you begin to KNOW it!
I've been at a conference since Wednesday evening and will be going/blowing thru the weekend - exhausted but think it is good. So I'm not much in touch but did want to touch base on board and so glad I did. SO proud of you...
Blessings to all, Carol
ps...there have been several new posters that have been really needing info/encouragment and boards have been very quiet... don't have time to check status now, but hope they are getting needed feedback.
Isn't it funny how we have always been so strong that we feel like anything that helps us physically is a step back. I was so opposed to getting in a wheelchair it is almost scary to think about it. When we went to the hospital to see Ava of course there were wheelchairs everywhere and my youngest daughter got one and came down to the parking garage to "pick me up" while Ronnie parked the car. I got in it and never even thought about it. I am starting to think that old saying "you have nothing to fear but fear itself".
I know what you mean about continual herxing to the point I say how do you differentiate just feeling crappy all the time and a herx. I haven't read the section yet that Dr. Crist talks about herxing but Ronnie says he tells you to stop meds until it passes. Again how do you tell? At least Ronnie now understands this won't be a cakewalk.
How long will you have the cast? I know when I have days with really stiff hands it is hard to type. I can't imagine having a cast on. I am not what you would call computer literate and if I hit a key by mistake everything I have written disappears. You probably don't have that problem. But I am much better at this than 8 months ago. I hope you start to feel better soon.
i was wondering what your dr said about mobility problems. has he seen this reverse? i don't mean to be nosy but sounds like our situations may be similar. you don't need to answer that if you don't want to. sometimes i wonder if this is really going to reverse and i may actually be able to take a normal walk someday. i see my llmd on tues and i'm going to talk to her more about this. last time i saw her she said you're probabably going to get worse before you get better. this has been true.
To be honest with you we didn't even get into the mobility situation but he definitely saw there was a problem. There was so much to discuss and some little tests that I guess all that will come later. The nurse said this could take from 6 - 18 months to be resolved. One thing I will say is that when I first called up there I talked to a nurse and asked her if they had any patients with mobility problems because I didn't want to waste his time or mine if it wasn't lyme and she said yes. In fact she said one had just come in to visit who had been in a wheelchair a year ago and is now doing great. Gives us hope I would say. I have heard that just about everything reverses itself once you have gotten rid of the bactria so I hope for the best. When I was on the rocephin I actually strung 3 days together that I walked perfectly normal so I do believe this can happen. Keep me posted on what your llmd has to say.
Congratulation on your granddaughter and your great visit with Dr. C. Congratulations on the "lyme diagnosis", I guess? Seems a crazy thing to congratulate you for but it must bring some peace of mind. I was wondering if you asked Dr. C about Samento and what he thought about it. I just started some Zoloft and a different birth control to get control of my depression and hormones. My psyciatrist gave me something called Rozarem for sleep. It focuses on melatonin. Maybe it's worth a shot. I am feeling better but still a little discouraged. I am keeping my options open. I called Dr. Harris' office last week and they called back and said that the first visit is $450 and you have to give them $100 of that as a non-refundable deposit just to book the appointment. They don't bill insurance of course. So I'm not sure what to do yet. I think I will call back and see if I can get some more questions answered and see how I feel in the next couple of months. I wouldn't be able to plan a trip to CA until after the holidays anyway with my husband traveling, three kids, and busy schedule through Nov. and Dec. Have you started on your antibiotics? I will be anxious to see how you are feeling. I'm glad you had a positive experience. Here's hoping!!
I can't believe Dr. Harris' office won't file your insurance. I had to pay (used a credit card) to see Dr. Crist but they are filing the insurance. We are just going to pull money from the 401k. He said it is a shame that I don't have Medicare/Medicaid because it opens up so many doors for treatment. As I said he is very methodical. My visit was around $1116. The visit was $460, I think he gives out of state patients a break. Then I did the Wetern blot even though he said it wasn't necessary. I also did the hypercoagulation test which I am sure will be a problem too because the holistic doctor already said it was, just in different words. He is agreeable to meds for this or the stuff the homeopathic gave me or something similar to it.
He does recommend the hormone testing and and is big on neuro-transmitters but I can't do it all at once and he doesn't push. As I read the tons of paperwork he sends home with you I can decide what tests to do. As with most llmds he will work with your doctor too but hopefully it won't have to come to that. The pharmacy had no problem filling the precriptions.
I am on nystatin (yeast) meds even though he said there doesn't seem to be a problem he has you take this the whole time you are on abx so there won't be a problem. I started clindamycin 2 days ago and you build up to 1 - 4x a day if possible and on the 4th day I add quinine in case there is babesia. I do this for a total of 10 days. Then you take a 10 day break but I actually think during that 10 day break I will be taking biaxin and plaquenil combo. I have to confirm this. I'm still reading. He recommends taking meds at least 6 - 8 weeks before giving up on them and if they are working you stay on them until you plateau and then he goes on to something else. He tries real hard to cure you with orals and if necessary then he does IV.
I like his attitude about herxes and stoppping meds until it passes and dropping back on dosage if it is too much. He talks about the turtle and the hare. His appraoch is pretty well thought out and I hope it works. Time will tell. He does talk alot about supplements and even saventaro (cat's claw) and that I like but will wait and see how the meds go before adding to the mix.
Ava is just precious and Rhonda is dragging the poor child everywhere. I guess she was so bored from all the bedrest she had she is ready to socialize. The baby is only 12 days old though. She is Rhonda's to raise though so I am not saying anything. I guess she will settle down sooner or later.
Let me know what you decide and who you will go and see. I hope the new meds you are taking will help you through the holidays. Any snow yet?
Thanks for the info. Maureen. We don't have snow yet. We haven't had much snow here in Boise for the last 7 years or so. Hopefully we will get some this year. If it's going to be cold I would at least like to have some bright pretty white snow to cheer me up. Winter is not my favorite time of year.
I am starting to feel a little bit better day by day. I'm still very tired and when I do get some energy I tend to overdo it. Oh well. We are going to Orlando next week for 10 days. We are taking the whole family. We are flying!!! I can't believe I'm flying across the country with three kids!! I hate flying. Oh well, I will just drug up so I don't have any panic attacks and just sleep on the plane. Thankfully my husband will be going and can help out a lot. I hope the 2 1/2 year old likes the flight. And I hope I don't have another set back from the stress. My husband said that we are going to try to take it easy and have a REAL vacation and not go 100 mph every second of every day. I think we should be able to do this since we are going to be there for a while. I hope there are no more hurricanes. So if you don't hear from me for a while it's because I'm out of town.
I hope things keep going good for you. I think about you often and am anxious to know if this medial route will be helpful. Have you got any test results back. I would love for you to post your results when you get them.
I hope you have a great trip and it does turn out to be a "vacation". A few days in the sun will be great. When my 3 oldest kids were 5, 2, & 1 we flew back to Pennsylvania for Christmas. The kids did fine. When I think back on the trip I say I must have been crazy. We took all their presents including 2 little wheels so Christmas would be fun. Then we had to haul them all back. I guess the airlines were more patient about what you could take on a flight way back then. I haven't gotten any results yet but will post when they come in. I added the quinine yesterday and so far nothing has been a problem. I don't know if that's good or bad. Maybe for once I will follow the normal herx protocol and just feel worse for a few days. Nothing is better but nothing is worse and it has only been 5 days on the meds. I did have a burst of energy 2 nights ago and cleaned the refrigerator and didn't know what some of the stuff was that had gotten shoved to the back. I look forward to a good report from you on a fabulous trip.