thanks- my LLMD just suspects babesia because i had a sudden onset of symptoms two years ago (flu like, immediate) and had some nightsweats that cleared up with zhang's artemesia and continue to have...
Hey Stacey: It took a good 4 weeks for me to really notice the brain fog going away. Now it only returns when I herx. I started the mepron and zithromax on Saturday and am feeling it today. I don't...
Thanks for the input - I think when week 12 gets here (in two weeks) I will ask for another CD 57 and then reevaluate...
Hi All: haven't been on in awhile - just wanted to get input for those of you who did IV rocephin. I am 9 weeks in, the good news is that the brain fog is gone for almost all of the time -my brain...
This is great news, congrats to all of you...
Clark - try what Phsinvent said first, and if that doesn't work, try to see if you can do the IV route. I did a year of orals (zithromax and tindimax) with only small improvement in brain fog - 6...
Sojourner2dd: How long did you do rocephin? I have bcbs KC, but it took getting into an ID MD here who actually believes in chronci lyme to get approved for iv rocephin - that and my spect scans...
She had to do a year of IV's - she was in really bad shape when she started, and like almost everyone, reported the terrible fatigue when she started rocephin. I'm really tired today, but most of...
Hey - I am just finishing up 6 weeks of IV rocephin. It has been interesting. First the bad, the fatigue has been incredible. I h.ad to take two weeks off from work I was so exhausted. Still only at...
I am coming up on my 4th week of IV rocephin - the fatigue has been unbelivable, but I am now seeing large groups of time where I feel absolutely normal -yesterday from about 3 pm until I went to bed...
I'm 3 weeks into it - ditto about what Razzle says about being careful. I go once a week to my doctors office where they change the dressing, draw blood to make sure I am doing ok and look at the...
Kim -that's good to hear that you felt up to running a 5k. I haven't been able to run further than a mile since getting sick. How long did your fatigue last?...
I just started up again. IV rocephin knocked me down pretty good. I am still coming out of a herx that was incredible fatigue. Like mono - I was basically bedridden for a week. My MD was happy - he...
Marie- that is awesome. I am going to the gym everyday and doing 20 minutes walking on the treadmill. Forcing myself even when I don't want to. Can't wait until I can post about my first race back. I...
Georgiagirl and Kim: This disease sucks, doesn't it? Hard to believe that age 40 I would feel like I am 80. Georgiagirl, I am so sorry you are having to do SSDI. Hang in there -it is good to hear you...
Yes, MRI often do not pick up on abnormalities. I had an MRI done in March 2007 that was normal. In May 2007 I had my first SPECT scan showed moderate vasculitis throughout my brain. Thankfully it...
Lymebean - I think you should discuss IV's with your LLMD. It is a choice that everyone has to make in concert with their doctor. I wasn't big on going on it - but the Dr. Fallon study showing the...
Stacey, I will try to call you at some point in the next day or so. The rocephin is currently kicking my butt. I am having to take time off from work. Dr. B says its a big herx. Right now I am just...
Thanks Kim: My LLMD here told me that the minimum I will do is 3 months - most likely more and then he will have me on orals, maybe indefinitely. The nurses that change my bandages say that Dr. B....
Bella: My understanding is that if your CNS is involved, that means that spirochetes have infected your brain, causing encephelitis (sp?) From all I have read, the only way you are going to get that...
Georgiagirl - great to hear you are getting energy back. I am in the middle of my first major herx with this - the fatigue is unbelivable!...
I'm hanging in there - I know Dr. J. in Wichita reads this post and I haven't told him yet, but its my life and I have to make decisions that are best for me and my family. I got a call the day I got...
Brandon: I could have written your post, only I didn't see any tick or get a rash or anything. I just got sick as a dog after spending a week in the Texas Hill Country and was misdiagnosed for over 4...
Most ID are worthless. They go with the IDSA guidelines. I went to one, and he said "I know you are sick (after looking at my SPECT scan and my western blot) but I don't know if you have lyme."...
georgiagirl - how are the iv's working for you? I think of you often, hope you are seeing improvement...
Hiker 53: email me if you want, I have experience with Dr. R in KC and Dr. J in Wichita: [email protected]...
Gretchen - you seem to have recovered pretty well - could you tell me what got you feeling good. I recall at one point you did IV rocephin, if I remember correctly....
I'm ok - talked to jernigan and we cut back on a bunch of stuff, hopefully that will help....
cut out all sugar and limit your yeast intake on top of the probiotics...
People get well. Since I have been on here since January I have read of several people on this website who have gone into remission and are feeling good. Dejavu and Wackowoman are only a few who got...
Hi Bella: So sorry to hear about your continuing heart problems. I am kind of beginning to think that all of us self treating either Zhang's or whatever can be dangerous since we don't have any LLMD...
I think a lot of depends on how long you have been sick and what your symptoms are. My understanding from all I have read is that if you have CNS involvement, like seen in a SPECT scan, that IV's are...
Tons of people relapse. Your daughter is very young, I wouldn't mess around with this....
Yes, he was talking about bands that are reactive for lyme. She needs to be treated for much longer than 3 weeks. Find a doctor who knows about chronic lyme and get her treated sooner than later....
I just started Jernigan's protocol after spending a week at his clinic. I have tried doing lots of detoxing with the baths and am doing the microbojen and neurotox cns/pns. It is too early to say if...
snake you can email me at:[email protected]....
glad to hear you are feeling much better- what exactly has the IV rocephin done for you as far as symptoms? How long will you need to be treated. I was fortunate in the fact that only I have it my...
HH took awhile - at 3 a day you'll just notice some anxiety and some insomnia. If you up it (I tried 6 a day once) you'll get terrible anxiety and won't be able to sleep over an hour at a time...