I am finally on Quinine and Clindamycin, along with Nystatin, Acidophilus and all of the vitamins I am taking. I was wondering if anyone has any pointers about taking these drugs...or if there is something I need to avoid (other than antacids) that might interfere with the absorption of the drug.
I hurt really bad a few hours after taking the first dose (am on on day 3 now). Every inch of me that usually hurts because of the disease...hurt really bad that night. I woke up in the morning and had an awful taste in my mouth. It tasted like hair spray...and still does, not that I would know what it tastes like! My sweat doesn't smell like normal sweat either...it smells like something I can't explain. It's not really an offensive smell, but rather a chemical smell like cleaning supplies. Has anyone experienced this? Which drug is causing the horrible taste? I think it's the Quinine, but I'm not sure! Please let me know about your experiences with these drugs if you can! Thank you!
I just stopped the clindamycin/Quinine & Biaxin/Plaquenil protocol with Dr. Crist. I think you see him too? I know at one point you thought you got rid of the lyme but then thought there might be a co-infection so you started feeling bad again?
I saw Dr. Crist in October for the first time and he decided to go after co-infections first I guess because these are the first drugs he gave me. Ten days on one combo then 10 days on the next and repeat. I ended up doing 3 sets of the C/Q and 2 of the B/P. On the fourth day when I added the Quinine I had a pretty decent night. I was able to clean my fridge and not feel like I would collapse on the floor. It was short lived. Both combos drug me down and I did take a few days breather here and there because of no energy at all. I do have to say though that at 4 weeks and 8 weeks I herxed. A first for me after a year of trying lots of stuff. I did take a couple days off during the herx when it got real bad.
I don't know which of the drugs causes the taste in your mouth but for me it was 24/7 with both combos. It took a few days to notice it but really puts a damper on the taste buds. My husband is doing the shopping now and by mistake bought 1 package of cream cheese that was regular and 1 that was fat free for me to make a dip I make at Christmas. It tasted horrible to me and I blamed it on the fat free stuff but nobody else could taste it. I also had the funny smell in my urine. Actually I still do and I stopped the meds 6 days ago. I don't sweat much but noticed my urine smelled different. Not bad necessarily, just different. Still does. I am hoping it is dead bacteria!
I ran out of meds 6 days ago and my next med will be rifampin for bartonella. He told me he thinks this is a problem and again as I look at his sheets he gave me (150 pages) I am convinced he is going after co's first. I was quite concerned about this as it is an anti-tubercular drug but have since found in a lyme book this can be used as an anti-bacterial. Not liver friendly though so that concerns me. I think I will be taking lots of milk thistle. Right now the presription is for 30 days so maybe it won't be too bad. I will start tomorrow as I wanted to give my liver a week's rest between meds since this med can be a problem. I hope I fall into the category that breezes through it. Needs to be done though. If I read his paperwork correctly then we are finally on to the lyme meds.
My biggest concern right now is all the weight I have lost and mobility problems. Dr. Crist does keep saying that the tortoise won the race though so I guess that would be me. If the meds knock you down too much do take a little break because he feels slow and easy wins the race. Good luck and the bad taste will go away when you are off the meds you are on now.
Clinda causes the metal mouth. Thats what I call it. Jemsek wants me to try & get some of the lyme before I start meds for the co-infections. I was on primaxin for 2 wks then added the clinda (got the metal taste immediately.) It would come each time with the treatment but then it finally came and stayed. My taste buds don't know how to taste anymore. Even being on drug holiday for the last wk, food just doesn't taste like it should. I was on the first meds for 8 wks and just picked up my mepron (is yours mepron or quinine?). I resume the clinda Mon add zithro IV. Mepron is PO.
I'm like you, could use any advice on the zith or mepron. I do know a spoon of fatty food.
I do feel I have had a little improvement with the holiday. But as I told Larry, I got so much worse with treatment. I may still not be where I was before treatment began. Then I thought I was bad......
I do hope you will come back and let me know how you are doing on the meds in a few days.
I start Monday. The PA I saw at Jemsek's office said this would be a rough treatment. It will kill lyme, babasia, bartonella, and mycoplasma. I just had a dream and in it the whites of my eyes were yellow and my skin was yellow. I hope that is not a sign of whats to come. I have been concerned about how my liver will handle this. I am on milk thistle, but do think my liver has been affected with the last 4 day pulse of flagyl at the end of last week. I'm still waiting on the blood test from that. She has me doing fluids every other day.
I hope you all feel better soon. I can't add anything as I have never taken theses meds. I just wanted to agree with Marsha about being worse now then when I started treatment. Feel like I'm going backward. Any little improvement would be encouraging. I've been reading Dr J's book and he says abx will get only about 85% of the bacteria. Right now 85% sounds good. I know long term 85% is not good enough but gotta start somewhere.
Maureen I would be curious about your meds. My current LLMD does not switch meds weekly or even monthly and I'm wondering if I would benefit from a regimen such as yours. I had asked her about the bacteria becoming resistant to the meds and about switching more frequently. I didn't have any specifics as far as med choices to discuss with her.
Hope you all have a good day. Very cloudy and damp here with lots of rain coming tonight. Hope you've gotten rain in your area Maureen, I know you need it. Is your husband a cowboys fan? My husband has been a big cowboy fan since he was a little kid. He doesn't have much company in that here in NJ Giant country.
Thanks for all of your posts! Today was day four of my Clindamycin and Quinine so my meds increased. I was very tired today, but my hands, arms and hip don't seem to hurt much at all. I hope that this is a good sign! I was never able to take drugs to treat co-infections when I first got bit because I was pregnant. I suspect that I do have Babesia...and the first day I started treatment for it I felt so yucky! It's nice to not have my arms and hands hurting, and the hip pain came on about two weeks ago. It was an awful feeling in the ball and socket area. It felt like little sharks were biting me inside, or like when you pull something or have bone loss. I knew I never hurt it so I figured the pain was all part of this disease. I am pretty sure that my tired day was not because I walked over 5 miles on the treadmill yesterday, because I had no muscular pain. It was kind of funny, shortly after my medicine kicked in I had to rest. The kids kept telling me to get them this or that, and I kept saying, "In just a little while!" I made them wait a while to eat their breakfast and I felt so bad. I hope tomorrow is better. I didn't exercise today, but I will tomorrow! I guess I needed the rest! I was so exhausted today that I didn't even take a bath. Yikes! Here it is 12am and I am getting ready to get clean!!!! I can sure tell that the C/Q is somewhat harder on my system!!! Oh! Yes, I am seeing Dr. C, too. My next drug will be rifampin, I think. I'll have to find all of my paperwork! Well, I have to go clean the tub and take a warm bath!!!! Good night!
Just wanted to let you know that the Clinda/Quinine combo kicked my butt. Starting just in December I had a rotation of Biaxin/Hyrochlorquine for 10 days and then 10 days of the Clinda mix. It was my first go around for both sets of meds. I herxed terribly from them. Not only did I feel bad all over, metallic taste and constant nausea, and all my symptoms worse from a normal 7 on a scale of 10 moved to a 9 or a 91/2 by day 5 of the rotation. But in addition they brought on a 101 to 102 degree fever by that day 5 that lasted for a week after I stopped taking the med, which was accompanined by spine busting pain in all my bones. Literally I thought I would snap in half. If I had thought anyone in an ER could have helped me I would have been there in a second. sigh. Anyway I also was super nauseous, throwing up anthing I ate or drank for most of that week. Dr. Crist had me stop the meds as he determined it was a severe herx reaction once we saw it start up again on a second try of the combo 2 weeks later. So now I'm on Cefuroxime, generic form of Ceftin. And it's kicking my but too. I was only able to take it for 5 days before hurting to much that I had to take a break for the past 5 days just to feel back to my normal crappy self. But I am happy that I hurt so bad, lets me know the stuff is still dying but in the same vein lets me know I still have a long long way to go. Keep on trucking though, right? Right. I wish you easier going on the combo. Good luck and take care.
"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12
All I know is that Dr. Crist believes that combos seem to work better and that is why I was surprised that the rifampin is by itself. I think it is because it is hard on the liver. It seems as though a lot of doctors are now doing combos, not sure why but if it works I am willing and able.
Ronnie is a Cowboy fan and we moved here from Boston (37 years ago) when then Cowboys still played in the Cotton Bowl. He went to games there. There is going to be a new stadium in Arlington in a few years because the Dallas taxpayers wouldn't foot the bill for Jerry Jones. I hope they don't change the Cowboys name! Ronnie was from Pa originally and went to an outlying campus for Penn State. We are big time into their football team and love "Joepa". I can't believe after the year they have had people still want him to retire. I hope I am as spry at 79.
I haven't taken quinine, but I've taken Clinda along with Mepron and Zith. I found it a very effective and easy to take med, but of course it is going to be different for everyone and I also suspect it depends on what strain(s) of the bug(s) you're carrying. I have heard from people who have found it a bit difficult to take.
I have been doing combos for almost 9 months and for me they have been very powerful and effective. I think one reason they are more effective is that it is harder for the Bb to adapt and become resistant to the combos especially when they keep changing them every month or so. This I think ends up shortening treatment time in the long run, because you don't waste time taking something that the buggers have become resistant to and they don't get an opportunity to fortify themselves.
As far as interactions, I always look at the info sheets that the pharmacy provides (at least the ones in my state do this). I just try to avoid taking any vitamins/herbs/etc. within 2 hours of the meds. That can be really complicated if you take meds frequently though (I was taking the clinda 3x a day in addition to Zith/Mepron). I have to say though that that was one of the most effective and successful combos I've been on, I really made a lot of progress on that one. It can be rough to go through, but remember that all that crappy horrible achey feeling means that the cursed 'keets are being slaughtered in droves!