GomezNC...andNCGirl: - Lyme Disease Message Board

raleigh86 · 03-17-2005, 02:01 PM

I go to J. Clinic tomorrow. I see Julia. I just finished 3 days of Flagyl. I can only take meds 3 days a week. They will check my white blood count again tomorrow. I have been on Levaquin and had a rough time for 2 months. A pharmacist friend is surprised with all the problems I've had with Levaquin, even taking it just the 3 days. The combo of Flagyl and Levaquin has been awful. I am taking 500mg Flagyl twice daily. I think that is too much for me. I am praying they take me off the Levaquin. What doses of Flagyl is everyone taking?? Does anyone else take meds less then the 5 to 7 day normal regimen? NCGirl, when is you next visit to Huntersville and what meds are you currently on? This round of Flagyl, I decided I wasn't going to take it the same days as Levaquin, so have taken it the off days, which hasn't made any difference. It's the day after Flagyl that is worse for me then the actual day of taking it. I took just Minocycline today and haven't take Levaquin for a couple of days. I am tingly all over, face, mouth, arms, legs, everything. It's quite discouraging. If Julia changes meds tomorrow, I feel I will be starting all over since I have made no progress this year. The Levaquin has kept me in constant pain. That's another thing trying to find anti-inflammatory. Lodine, Levaquin and Flagyl have really messed me up. December was my best month on Septa and minocycline. I had no pain, so I didn't have to take anything more then Advil. I take vitamins, because I always have. I haven't done any research for supplements and Lyme. I am careful about taking them 2 hours after I take meds. I do want to go over this tomorrow to make sure I am taking things in the correct order.

Good luck Gomez. Are you in Raleigh?

Raleigh86

ncgirl88 · 03-17-2005, 03:18 PM

Hi Ral86 - My next appoinment is next week. I am doing pretty well. I had a great week off meds. I take a combo for two weeks then am supposed to add Flagyl to all of it the third week but so far I have never been able to take all of it...just end up taking Flagyl by itself - I did try to add Zithromax with the flagyl last week and I started to herx but had a guest coming in and stopped two days early. I then take a fourth week off everything.

I have made progress I feel. I have not been on Levaquin yet although did take it when I was getting UTIs but just for three days. I have never taken it for tick borne illness.

I am to start taking Septra/Zith. this week.

I have also started a form of Body work therapy. While even I am skeptical of it a bit I believe it might be helping.

Good luck tomorrow and let us know how you are doing. I have not had the joint pain that you have had constantly. Mine comes and goes. My symptoms are mostly related to neurological stuff, hormones, and gastro problems. I do get severe joint pain but it is transient and is present when herxing.

-ncgirl

dealer1111 · 03-17-2005, 03:30 PM

My wife and I will be in the J clinic on Wed of next week.

GomezNC · 03-18-2005, 06:25 AM

Hi Raleigh,
I just started Levaquin last week. I do feel a little bit worse. I take Flagyl 500 twice a day also. But I add that the third week of the month. I always feel worse the week I take Flagyl. Julia put me on meds every other day until my blood work got straightened out, but now I am back to 5 days weekends off. Julia has changed my meds about every month if not every 2 months. I live outside of Statesville. Good luck! Let me know what happens!

raleigh86 · 03-21-2005, 09:13 AM

I saw Julia at J. Clinic last Friday. She put me on 10 regimen, 4 weeks (5 day weeks) on septra and minocycline, week 3, flagyl, 5th week with no meds. The following 5 weeks is septra and zithromax. My best month in Dec. was on septra and minocycline. I hope it works again this time. I was on levaquin from Jan. 18th till last week. It was kind of sporadic due to pain. They had me go off from it for a week. I was only on 3 day weeks, but I was miserable with every dose of levaquin. I know I will be on it again at some point, hopefully more tolerable. I have had sporadic joint pain throughout, but it was at it's worse with levaquin. I hope this might pass. My biggest issues are with my elbows. I have had previous elbow issues from past injuries. I take bextra. My sister-in-law swears by celebrex and vows to continue till they take it from market. Julia gave me prescription for neurontin. It's prescribed for neurological pain. She said I could adjust this as needed, but it caused drowsiness. The pharmacist showed some reluctancy, which made me nervous. I use to tolerate most drugs with little problem. I find have problems with new drugs, since lyme. I took only 1 neurontin on Friday night and woke Sat. with fuzzy, foggy, drug like feeling. My husband thinks I should continue to use it in case it really helps with my pain. I told him that I have waken every morning for 1 year with this full head, foggy feeling from lyme and I wasn't going to try to wait it out with neurontin. In 5 weeks, will by first go at zithromax. How is everyone tolerating it?

My question to anyone: when you have a good week or month on certain meds, are your lyme symptoms gone, or do you just feel better? My best month was Dec. however, I still had all my lyme symptoms, but just felt I was coping better and had more energy. I have been in treatment 5 months. My symptoms are no better. I have been worse the last 2 weeks, taking levaquin and flagyl. My last flagyl and levaquin were last Wed. 3/16. I am feeling some better, but not back to pre-levaquin. It's discouraging and I am looking for input from others.

Raleigh86