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    Old 02-26-2006, 07:01 AM   #1
    Betterdaysforme
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    My visit to see Dr. Crist

    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.

    We drove for about 6 hours and had to stop. I can only take so long before I need to pee. 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? 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!

    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. 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. 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!

    Love,
    Maureen

     
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    Old 02-26-2006, 07:08 AM   #2
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    Re: My visit to see Dr. Crist

    well thats a definate be back later thread, joint in the oven. and want to give you all my brain cells hun, hear the carrots calling now.
    MMWWWAA back tonight.
    xx

     
    Old 02-26-2006, 09:20 AM   #3
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    Re: My visit to see Dr. Crist

    Thanks for the update, hope you do well on this new med.

    Looking forward to better days!

    Jeanne

     
    Old 02-26-2006, 10:37 AM   #4
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    Re: My visit to see Dr. Crist

    Hey BDF do you know what absoultutely amazes me, you can write all taht and no mistakes and i do 3 sentences and its double dutch.

    Well fair play for the journey, and what a guy Ronnie is, did you find him back in the day when gents where gents and many of them

    I wondered if you have a train goes that way, booking a seat by teh door and toilets, and a train with a food cabin also for snacks?
    Hire of a car the other end real cheap on teh hourly basics..
    no dought you've tried but just a thought.


    shame about the cabin but shessea what a price for a night but the spa would of gone down a treat.

    Im still in the dark with alot of the meds you all try. hope i wont have to go down the roads you have struggled.

    Hope this new stuff does the trick, andgets you playing hopscotch real soon

    Jules xxx

    Last edited by battling on; 02-26-2006 at 10:38 AM.

     
    Old 02-26-2006, 11:31 AM   #5
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    Re: My visit to see Dr. Crist

    Hi Maureen,

    Goodness, for a short visit, you certainly learned alot! Sorry about all that driving and your arse.

    I find that interesting about the bands 30 and 31 should be compared to bands 23 to 25. I think all in time, all the pieces of the puzzle will come together.

    I started with the colloidal silver and I thought it helped me, I know it didn't hurt to take it. But $1,000 sounds like too much money for Silver for 3 months.

    I think most members here have been on flagyl and I think it really kicks butt! It's the side effects that don't sound too great. But I know you have read so much about detoxing so maybe the side effects won't be so bad for you.

    Also interesting about making the body alkaline, have to go back to that book I bought. Just been busy getting my house ready for the architect's crew that will be here for 3 hours measuring everything for the blueprints.

    Sorry about the cabin, I know how you talked about it and I'm surprised it was that expensive! Golly gee! So you thought of me when you saw some snow, huh? I still have snow laying around in spots. But March is just around the corner.

    It's a small world isn't it when you meet someone in another state that has a relative in your town. Mail her pictures of your crafts! I love when that happens to me. Maybe you will have the entire office ordering stuff from you!

    I wish you could walk, that bothers me so much. I remember when I couldn't walk and was crawling around or using crutches, it was not a good experience.

    All in all, it sounds like you had a productive visit.

    Last but not least, as far as the Magnetic Bed/Pad, I know in Dr. J's book, he talks about using a Peat Blanket or Pad to keep the warmth in the body. I can't find Peat anywhere. I think it's the same concept.

    Perhaps Jeanne would know more about the Peat.

    Anyway, glad to hear about your visit, it was very enlightening indeed!

    Hugs,
    Denise

     
    Old 02-26-2006, 12:52 PM   #6
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    Re: My visit to see Dr. Crist

    Hi Maureen
    What a wealth of info you got. Glad to hear of the primaxin. I'm ready to go back on the meds. My drug holiday ended yesterday when all the old symptoms came back with a rush. I do take probotics and glutamine when needed.

    I have been on flagyl. The main concern is keeping a check on the liver. This is so important. Detox!!!! Flagyl can really cause a herx. Just remember you're killing ketes.

    I know the trip was hard on both of you. Keep us up to date on how you're doing.
    Prayers.....Marsha

    Last edited by Pearlscale; 02-26-2006 at 12:54 PM.

     
    Old 02-26-2006, 01:12 PM   #7
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    Re: My visit to see Dr. Crist

    Hi guys,

    I brought my paperwork from Dr. Crist's upstairs so I can elaborate and of course I had forgotten some of it. Brain fog.

    When he talked about the colloidal silver he also talked about something called "Lauricidin". It is a fatty acid and kills all viruses, bacteria, and fungal infections. He says it will be cheaper than colloidal silver and he is getting ready to do a research project with it with selected patients. I am still convinced after all the abx we have taken that something very simple will kill this. Go Dr. Crist!!!!

    He also said that metabolism may play a role in your treatment and what works best and he is investigating this. He said he may soon offer oxygen treatments too. They are searching out a lab so they can test blood gases. If nothing else he is exploring all avenues and I think that is what gave me such confidence in him.

    He is also studying the effects of Diflucan but not yet ready to say it kills the bacteria. He did say it helps women's hormones though. I thought that was interesting. He mentioned that memory loss and brain fog are the 3rd most complaint he hears from patients and recommended Cogimax 3X and Membrin. You might look these up if this is a problem.

    He also gave me a handout titled IODINE. He states that he has tested 32 patients (recently I guess) and every one of them was low on iodine. He recommends IODORAL capsules. He said this can sometimes cause a herx so lyme patients should start out with just 1/2 capsule and increase the dose to 2 capsules 2x a day. He said some of your tissues that use iodine are white blood cells, thyroid, breast, liver, stomach, ovaries, uterus, & skin. You should take this for a year? Iodine helps the parietal glands in the stomach produce acid for people with poor digestion and helps sleep too. He claims this will lessen herx problems too. He did say initially you could have herx type symptoms but these will fade. But once the iodine stores in your body are better your herxes will be too. It is supposed to help with depression too. He said people with iodine levels that are low are usually low in zinc too. He likes the Iodoral because it has iodine and iodide. I guess you can be tested before and after taking this too for levels to see if needed.

    All of this is his opinion so you might just run it by your physician after researching it if you think it is worthwhile.

    The magnetic pad I told you about is by Dr. Dean Bonlie. He is actually a DDS. I haven't looked him up but maybe you all would like to. He claims that 91% were pleased with the results. I guess the name is Magnetico sleep pads. Again pretty expensive but may be worth at least looking up. I know how you all love to research. Hope all this helps somebody.

    Maureen

    PS Jules, I don't know how to use spell check so I go back and correct all my mistakes by reading what I wrote. I know, I need to get a life!

     
    Old 02-26-2006, 01:44 PM   #8
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    Re: My visit to see Dr. Crist

    hi maureen!so gald for you that you made your visit, those trips must be really exhauting!! only the idea of flting there from peru makes me so anxious... dont know if i can handle an airplaine... but lets see what happen..what medicines were you taking than didint help you? i was reading about SAMENTO this morning, a natural product and read i has helped a lot of peolpe with lyme and other diseases, actually the microbiologist i saw on saturday that did my brucella test, told me that this russaian doctor i am seing on monday combines homeopatic medicine with antibiotics, and you are right when you mention i am scare of starting the medicines and just feel worse..honestly i mostly read that everubody feels worse than better..how does it work? i hope the flagys works good with you.. check out the SAMENTO i dont know is that is in english or spanish, here is known as una de gato,i forgot, also this microbiologist menton me he knew a long time ago this famous writer that had lyme, he was so sick that couldnt write anymore, and a couple of years later, he found out he wrote a lyme book that was a best seller and run in to him and he said he was feeling great, he asked how how, and he told him after writing that book he felt great again.. i need to ask him more about ir.. i will see go it goes with this russian doctor tomorrow..i have never heard of her, i trid looking up her name on the internet and nothing, but again, all those infectologist i have seen here and on the internet, and the best and all they have done for me was telling me i am nuts and is in my mind... i will let you know tomorrow night how it went...hope you are feeling better and let me know... take care!
    p.s by the way i have read in some post about those oxigens bed that might help, cant remember the name, but last week here in peru, one machite explote while a patient was in!! a disaster... so i dont think i want to go on that oxigen things
    brid

    Last edited by brid; 02-26-2006 at 01:49 PM.

     
    Old 02-26-2006, 08:10 PM   #9
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    Re: My visit to see Dr. Crist

    Maureen: Hooray for you and hubby that you were able to go all the way there, 10 hours straight driving on the way back, take notes, ask questions, fill out forms, discuss your disease, learn new things, hobble to the bathroom at a rest stop, etc. Wow. You are a heck of a woman!

    I'm so glad you got a lot of information. Having all that homework and reading to do must make you feel good - like you are playing an active role in your treatment.

    Good luck with the Flagyl. I hope it works for you. Keep fighting these little buggers.

    Let us know how it goes when you start the Flagyl. How much will you take the first day? Are you still taking the Ceftrioxone? (I'm sure I butchered the spelling).

     
    Old 02-27-2006, 06:06 AM   #10
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    Re: My visit to see Dr. Crist

    Dear Mickie,

    I started the flagyl 2 days ago. The first day was 1/4 and yesterday 1/4 twice. Today I am up to 1/4 three times and I will jump to 1/2 one time tomorrow and do this until I am up to 3 whole pills three times a day if I can tolerate it. I stay at that for 2 months and then try to go up again to double that if I can for a total of 4 months. The pills are 250 mg. That is all I am taking and will go back to the cefuroxime after this is over. If none of that works it is back to an IV but claforam or primaxin this time not rocephin. I hope it doesn't get to that only because of the money involved. The shots you are on doesn't sound like something I want to do either. I am so proud that Xena can do this. Wow!

    I hope you are feeling better today and things start to go right. The crap magnet seems to be working full time.

    Maureen

     
    Old 02-27-2006, 04:57 PM   #11
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    Re: My visit to see Dr. Crist

    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

     
    Old 02-28-2006, 06:57 AM   #12
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    Re: My visit to see Dr. Crist

    Dear Kim,

    I know what you mean about the legs. I swear since starting treatment last year I am 10 times worse. At least before I could walk and pretty much function normally. I do have to say that I was seeking treatment though because I could feel in my gut that I was sliding. I guess this is just part of the game. I figure if it takes 3 months for every month you've been sick it will take me 15 years to get better so I'm not sure I like that equation. I thought somebody had said 1 month for every 3 you've been sick. That sounds better.

    Let me know how the consult goes. I know she can't prescribe meds but sometimes somebody has a puzzle piece so little to offer we think it can't help but in the end it helps us finish that puzzle.

    Maureen


    Marsha,

    I think it was on this thread you warned me about the flagyl. Although I was only on day 3 I thought it was going to be okay. Day one I took 1/4, day two I took 1/4 & 1/4, day three I took 1/4/, 1/4 and should have taken a third 1/4 and it hit. Hard! My arms and shoulders are so sore I can barely move them which prsents a problem because I use them to get myself up from a sitting or laying position. My feet, both of them seem stuck to the floor. I literally have to stop and convince myself that I can put a foot forward with every step. Thank God the diarrhea is gone.

    I am going to presume this is a herx from what I read on the paper Dr. Crist gave me. I know he said you may have to pulse if this happens and go back to a sliver but I would like to at least stay at the 1/4 twice a day. Is this how it hit you and what protocol did you follow. Did you have to pulse? Will this "herx" back off after a few days even if you continue the flagyl? I know at this point I can't go up in dose but feel this has got to be killing bacteria. How in the world can you herx after 3 days when the other meds take 4 weeks? Or is it really just your body reacting to the flagyl? One thing I will say is that last night my temp was 98.9 after progressively going up all day, it's usually 95.1 - 96.7 It has been a very long time since I had a normal temp let alone a higher than normal temp. I am going to take this as a good sign. Sure can use some of those. Thanks for any input. I was going to go today for liver bloodwork and know I need to but will maybe take a detox bath and see if it helps. I'm just not sure if I can get in there even with the walker. I can wait a few days if I know this will taper off without having to stop the flagyl.

    Maureen

     
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