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Lyme Disease Message Board


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Dear ZZZ16,

Welcome to the boards. :wave:

I started seeing Dr. Crist last October and have been back for one more visit. I was diagnosed for 4 years with MS by a neuro but at 52 knew I was too old for this plus there were no tests that proved it. Also my symptoms have been 24/7 for over 5 years now which is not typical for MS. And believe me there were lots of tests. After having blurry vision about 18 months into this I was told it's MS for sure and was given 1,000mg steroids for 4 days and that was my downfall. I ended up in the ER with severe heart palps. It has been complete decline since and the bacteria has really taken hold.

I had to search for myself and discovered lyme thru a friend's daughter. I had negative test results thru both labcorp & quest with only bands 23 - 25 showing positive so of course no meds. After searching high and low I found an Infectious Disease doctor who didn't think it was lyme until he listened to my heart :confused: and agreed to put me on an IV of rocephin. I was making small strides when my liver enzymes jumped from 40 -743 so he pulled the picc-line and put me on oral doxy which did nothing.

I tried natural but my husband was having a meltdown over my decline so I agreed to see Dr. Crist. We drive there from Dallas (8 hours). Like you I was blown away with all the paperwork (novel I call it) but felt I was if nothing else in very informed hands. He didn't even see the need for more testing but I requested bloodwork be sent to Igenex and I had many more positive and IND bands show but not enough for the CDC. Dr. Crist then interpreted the test for me and is 99% sure it's lyme. Good enough for me. Doxy I believe is the first drug of choice but having had the IV and the doxy I was given combos of Clindamycin/Quinine to be switched every 10 days with Biaxin/Plaquenil for a total of 50 days and then I was given a month of rifampin (believe it or not a TB drug) because he believes I have bartonella. After this I saw him and he was concerned that I hadn't made progress and talked IVs but I still owe the ID doctor for the first IV. I have been paying for over a year but got caught between 2 deductibles for a total of $5,000 plus my part of the cost. :eek: Dr. Crist put me on 4 months of flagyl and when the people on here talk about it being a bugaboo believe me that is what it is. It is majorly kicking my butt. He even said sometimes you can only take a sliver every couple of days. I have gotten up to 3/4 twice a day but may have to cut back. I press forward with the hope the more I take the quicker I'll get better but I know Dr. Crist keeps saying the tortoise wins the race so I think I may have to cut back. It's just too hard on my system. Not sick, just really arthritic in my arms, legs, and hands. I have a major mobility problem and have to use a walker and even then sometimes my feet feel like they are nailed to the ground.

His nurse had just prescribed cefuroxime for me (an oral rocephin) when I went to see him but he would rather I do the flagyl first and then the cefuroxime. If I have not improved by my next appointment I know I will do IVs. They really are not bad at all and I don't mind them but the cost will kill me. Thank God the ID doctor doesn't pressure for payment as long as you are consistent.

This is may be more info than you wanted but I just wanted to assure you that Dr. crist knows what he is doing and as you yourself know people travel very far to see him. If you look up the threads for Romans you will see he has another patient almost in your neck of the woods. How did you find him by the way? Shanna (Romans) will tell you that he has a very large bag of tricks and will use them all if necessary. You can also read some of cind68's threads because she has known Dr. Crist for a very long time and speaks very highly of him. Although I seem to be feeling worse since treatment I am hoping it is the bacteria dying and passing thru my system. Good luck in your treatment and keep us posted.

Maureen





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