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Hello everyone,

Well the trip didn't quite go as planned. Seems like plans don't matter much anymore anyway!

You all know I was having terrible diarrhea for 3 - 4 days before we left and I even called Dr. Crist's office on Monday to give them plenty of time in case I had to cancel. They were pretty cool about it and said to call the next day and let them know. Instead they called me at 8:30 AM to see how I was and tell me they had a cancellation for the day of my appointment at 10:30 and if I felt I could make it then I could probably get back home the same day with a 10:30 appointment than a 1:30. They said to just call back and let them know.

By the way I talked to the receptionist for a long time and believe it or not her sister is from Garland, Texas (or was until she got divorced). What's the chances of somebody 8 hours away having a relative in my town? Needless to say we talked for quite a while and somehow we ended up talking about me doing crafts and she insisted I bring pictures. This was just crazy but funny.

We left around 11:00 totally unprepared because Rhonda came over the night before to pick up her dog and stayed late so I had no food packed to go to a cabin or anything. I threw together a couple of sandwiches but that was it. :rolleyes:

We drove for about 6 hours and had to stop. I can only take so long before I need to pee. :eek: I will be so glad when I can walk again to at least feel comfortable to stop at a restaurant or rest area. I didn't sleep much that night, not sure why, but we got up at 7:00 and drove about 2 more hours to get there. I was filling out paperwork he has you update when you visit on symptoms and so forth and they took me back at 10:10. Best I can figure is that maybe he had another cancellation. This worked to my benefit because we ended up seeing him for well over an hour and I think the norm for follow-ups is 1/2 hour. Eight hour drive one way for a 1/2 hour appointment, yikes!

I enjoyed this visit so much more because since all the medical "stuff" was out of the way with the first visit we got to really talk. He was not really happy that I haven't made any progress, in fact may have stepped back some. You all know what I am talking about because it seems to be pretty common on this site. I know when we say stuff like this we are scaring poor brid to death.

As we sat and talked he kept looking at my chart and asked had I not taken flagyl yet? :eek: It must have been some kind of miscommunication with a nurse and they joked and said they would blame it on Bobbie. Not to worry though. I figured it would come along sooner or later. He knew I had just started the cefuroxime (3 days worth) and said I could do that first but really needed to do the flagyl next. I went ahead and said I would do the flagyl first since this "seemed" to be what he would prefer. They gave me a sheet for how to do this protocol and I was kind of amazed. It is for 4 months. I can't remember anybody taking this for 4 months. Has anybody done this?

I start out with 1/4 the first day and if all goes well work up to 3 pills (250 mg) a day over a 10 day period for 2 months and if no problems work up to 3 pills (500 mg) over the next 2 months. He does strongly caution this can create serious herxes and to not go beyond what you can tolerate. That surprised me too but this was a worksheet they had printed not just for me. Shanna, you may have the same worksheet. I started yesterday. It does say that if 1/4 creates a problem to do a sliver until you can up it. Scary stuff! :bouncing:

He did say I would need to go back to IV if this doesn't make a difference. I am not opposed to this but told him I do owe the ID doctor about a year's worth of payments but you gotta do what you gotta do right? I am pretty sure the ID doctor wouldn't care because he probably doesn't have a clue as to what I owe him now anyway. Believe me I have been paying him a lot for over a year but I got stuck with 2 deductibles ($2500) when I went from one year into the next while I was on IV.

We discussed a lot of other things, too many to list but all in all it was a good visit. Didn't get all questions answered (forgot some - even with a list) but I did get to ask him about exercise because Ronnie feels I should be doing this. His comments were that if you can fine but most people shouldn't or they do more damage. At least Ronnie won't push this anymore. I understand his concern and feel that he thinks I can only get stronger by exercising but knew right now I can't. I thought of you Mickie.

He has been going to a lot of conferences and went over my test results and feels even more that I have lyme. He said the last conference he went to in Phoenix they have proven (or just about proven) that the 30 and 31 bands should be grouped liked the 23 - 25. If that was the case I would be an absolute positive. Although he knew I was to begin with. All this knowledge in a way has to be frustrating for the true LLMDs because the CDC isn't changing their stance. Right now anyway.

He talked about a magnetic bed/pad that has helped with lyme and pain but is pretty expensive. I mean more than a sauna. :eek: But supposedly if you have not felt better after 6 months you can send it back to the doctor who developed it. Not a bad deal but can't afford it right now either way. He does love saunas but said to be very careful of the wood it is made of. He said he listed 2 in his first 150 pages he sent me home with. I will have to revisit the "novel". Even Ronnie is thinking about this as a possibility. Anything that helps is his attitude.

We talked about colloidal silver and some doctor at the conference said he had great results with 1 tbsp 3x a day of ASAP. He said this would run about $1,000 for 3 months and that is what was recommended. I find this interesting because that is the brand my homeopathic had me on. Not sure yet if I should or could use it with flagyl.

He feels I am not gaining weight because of lack of digestive enzymes so I need to get them, charcoal, or glutamine (sp) or maybe all three. Without even asking I was reading his Novermber handout (apparently he does one every couple of months) and he talkked about the importance of alkalinity. He said one of the best sources is "tri-salts". He does offer this but said you can buy it elsewhere. It sounds as though you buy the test strips and test with them until you reach a good level while taking the salts. Surely this is not the salt you use with the Vit C? I do need to read up on this. He also talked about what we originally thought was a swollen lymph node/gland in my neck (discussed this in another thread) and he thinks it is the muscle that is swollen now. Phew!

All in all it was a good visit and I am glad we went instead of doing a phone consult. We left at noon and grabbed a bite because we were starving. In fact when Dr. Crist listened to my stomach he said well I know you're hungry. Unfortunately there is a McDonalds right outside his offices. We grabbed a burger and started to drive. Went down through the mountains into Arkansas and it was so pretty. Even a litle residue snow on the ground. Made me think of you Denise. We drove about 2 1/2 hours and got to the State Park we thought about staying at and they had 1 cabin left. We didn't stay though because they wanted $125 per night for it. :eek: They apparently have added spas to all the cabins. I can't believe in the dead of winter this would be the charge. I mean this is not a ski resort. We didn't feel comfortable spending this much but the drive in the woods was nice.

We left and started driving home. Actually stopped at a rest area to use the bathrooms. It took forever for me to get in and out but other than truckers we were the only ones there so it was okay. Then like fools we drove on home to Dallas. The closer we got we kept saying why pay for a hotel room. I can guarantee we will never do that again. Ten and a half hours total driving that day and we both felt it believe me. That nerve in my butt was torture the last hour or so and poor Ronnie I thought would fall asleep at the wheel although he kept saying he was fine.

We are home and all I can do is hope that the flagyl does something (for the better hopefully) and then we will go from there. I do have to ask though. I know a lot of you have taken flagyl and would love to know how it went. I think you even mentioned it in a positive way the other day Ekim. What any of you felt like and if you feel it helped would be nice to know. Just another journey and I need directions I guess. I know Shanna has had huge problems but Dr. Crist said it really doesn't bother some of his patiens at all. Wish that could be me. If not then it is on to the IV of claforam or primaxin which he says has an 80% cure rate. I thought you wold like to hear that Marsha. And by the way maybe all the stomach problems you are having is because you aren't digesting stuff properly either. Think about some digestive enzymes. It's worth a try. By the way he even gave me a script for Bicillin shots if my doctor would do them. I will have to get the paper and tell you what it says Mickie. You don't seem real sure about it yet but I know gerribear did this for 6 months or so. I think Amy Tan thought they helped her too.

Sorry for the length but figured I'd tell the whole story. Jeanne should be the next one and then maybe Shanna and brid. Missed you guys! :wave:

Love,
Maureen
Hi Maureen

Glad to hear you had such a good and informative Dr visit. For some reason I thought you were going in March. Dr Crist really sounds like he knows what he is doing and I'm sure you are in good hands.

I hope you start to see results soon, I know you do not want to go back on the IV if you don't have to. I think with all lyme and especially the mobility problems it takes longer to see results. Even after 8 months I am still hopeful that a change will come. I think realistically it will take some time. Dr J's book says atleast 3 months for every month you have been sick. For me that would mean 18 months and I would assume that is from the time improvement starts. It is wierd that overall I am worse walking wise, but some small symptoms have gone away. I tend to measure progress by how my legs are working and therefore progress is zereo. I shouldn't do that and should look at the whole picture. I started taking the minocycline last Thursday and within afew days my arms were not as stiff (newer symptom) in the am. Trying to find encouragement wherever I can.

I am to start the Tindamax next week which is related to flagyl. I heard bad things about flagyl so I hope the Tind. isn't as bad. Supposed to be a cyst buster.

You know I always follow you and Tronni's progress because we have such similar situations. I have not seen Tronni posting lately and I hope all is well with her.

I could totally relate to the hobbling to the bathroom as that is the story of my life at the moment.

I called a woman my massage therapist recommended who had Lyme. I called her I thought for some advice and it turns out she has some sort of practice although not a Dr. She said she and her family had lyme and she herself was paralysized from the neck down. It sounded like everyone she councils has lyme, many who had been dx with MS. I guess it's worth the consult fee, which was reasonable, to see what she has to say. I am looking for support anywhere I can find it, but I won't go back if her advice is not worth it. I wish we had a support group around here. Maybe Mickie wants to start one, she lives my area.

Keep the faith Maureen, we are all pulling for you. My LLMD says the 3 Ps. Patience, Positive Thinking, and Prayer.

Kim





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