I finished my month of Tetracycline for this round of Lyme with cardiac arrhythmias. Now I start Biaxin and Plaquenil. I've not done these before- my only cyst-busters with my last round of Lyme were Mepron and Zith.
I've had my lab work, and scheduled my opthalmic exam.
The LLMD says herxes could be bad, I could have some temporary hair loss/shedding, etc.
I read the package inserts for both meds. They sould fierce!
What side effects have you had? How about herxes, what were they like? Did this combo help you?
Many Thanks! Cindy
Posted by blaze (Member # 16838) on :
I'm on both of these.
When I first started the Biaxin, the only side effect that seemed to correlate to this antibiotic specifically was that my vision got worse (blurrier).
Expect to have periodic alternating chalky/metallic tastes in your mouth, too, from the Biaxin.
Then I recently added plaquenil. So far I really haven't noticed anything getting worse. My hair still sheds, but I don't notice any more shedding than when I was on Biaxin alone or any other antibiotic for that matter. I definitely shed less than when I was on nothing.
So don't let the medication insert scare you.
Posted by sammy (Member # 13952) on :
I've been on Biaxin and Plaquenil since June and haven't noticed any side effects from either.
Don't be scared by the package inserts. They have to report every possible side effect no matter how rare they are.
In my opinion, the effects of Lyme progressing are worse than the potential side effects of any medicine.
The severity and symptoms of herxes seem to vary greatly from person to person. Good detox is supposed to help prevent and reduce herx symptoms.
It's hard to say whether this particular combo has helped me alot because i'm also on Bicillin LA, Mepron, and Minocycline right now. I've had great improvements in some symptoms and worsening in others.
Good luck with the combo, I hope it is the key to recovery for you Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by blaze: I'm on both of these.
When I first started the Biaxin, the only side effect that seemed to correlate to this antibiotic specifically was that my vision got worse (blurrier).
Expect to have periodic alternating chalky/metallic tastes in your mouth, too, from the Biaxin.
Then I recently added plaquenil. So far I really haven't noticed anything getting worse. My hair still sheds, but I don't notice any more shedding than when I was on Biaxin alone or any other antibiotic for that matter. I definitely shed less than when I was on nothing.
So don't let the medication insert scare you.
Thanks, Blaze, for the encouraging info. I was very nervous about taking the first dose. Part of the side effects are cardiac, and that's why I'm taking it- to treat an arrhythmia that could be caused by lyme!
The insert also says I can't take Xanax, which I take occasionally for mild anxiety. I could have used one today , LOL!!
Tetracycline gave me a metallic taste, too. I can live with that. Pass the Altoids!
Did this combo give you GI sx?
Did you herx? How many days? I don't want to be out of it for Christmas, and I have a wek of travel in early January.
I'm tired of being sick!!
Cindy
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by sammy: I've been on Biaxin and Plaquenil since June and haven't noticed any side effects from either.
Don't be scared by the package inserts. They have to report every possible side effect no matter how rare they are.
In my opinion, the effects of Lyme progressing are worse than the potential side effects of any medicine.
The severity and symptoms of herxes seem to vary greatly from person to person. Good detox is supposed to help prevent and reduce herx symptoms.
It's hard to say whether this particular combo has helped me alot because i'm also on Bicillin LA, Mepron, and Minocycline right now. I've had great improvements in some symptoms and worsening in others.
Good luck with the combo, I hope it is the key to recovery for you
Wow Sammy that's a boatload of meds! I hear that mino can be wicked. Headaches.....
Mepron wreaks havoc on my stomach, at least in combo with Zith, but I got my best results on that combo.
Good luck with your tx. Cindy
Posted by sammy (Member # 13952) on :
Thanks Cindy.
Mino is my newest med. I've only been on it for about 3 weeks now. About a week after starting it I did have a horrid headache at the base of my skull that lasted about 4 days. I also had swollen lymph nodes, cough, shortness of breath, and a raging sorethroat.
Still have the cough and chest tightness/short of breath symptoms so i'm assuming it is a lingering cold rather than the Mino. Hopefully it is not Babs or CPN rearing their ugly heads again!
With all these bugs it's so hard to know what is what.
Posted by pamoisondelune (Member # 11846) on :
I took several 5-month rounds of Biaxin+Plaquenil and had no eye damage.
My LLMD told me that the ophthalmologists in his area have never seen a case of retinopathy from Plaquenil. My LLMD has never had a patient suffer eye problems from Plaquenil.
The important thing is to keep the Plaquenil dose no higher than 400 mgs per day. The eye problem cases occurred at higher doses, before they knew.
I felt a lot of fatigue one fifth month on Biaxin+Plaquenil. I could work only 1 hour per week. Then suddenly at the end of the month I felt much better; BUT i wasted a lot of time needlessly.
That was before i discovered HERBALS. My LLMD just let me SUFFER through all those herxes, wasting so much time in bed. HERBALS added gave me back my normal energy and normal work-day.
That's not scientific, maybe i was getting better anyway, but I still feel that herbals are really NEEDED and important, to me at least. They help fill in some gaps. I can't tell you which would work for you, or which does what for me; i take a lot.
--- from Pamois.
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by pamoisondelune: I took several 5-month rounds of Biaxin+Plaquenil and had no eye damage.
My LLMD told me that the ophthalmologists in his area have never seen a case of retinopathy from Plaquenil. My LLMD has never had a patient suffer eye problems from Plaquenil.
The important thing is to keep the Plaquenil dose no higher than 400 mgs per day. The eye problem cases occurred at higher doses, before they knew.
I felt a lot of fatigue one fifth month on Biaxin+Plaquenil. I could work only 1 hour per week. Then suddenly at the end of the month I felt much better; BUT i wasted a lot of time needlessly.
That was before i discovered HERBALS. My LLMD just let me SUFFER through all those herxes, wasting so much time in bed. HERBALS added gave me back my normal energy and normal work-day.
That's not scientific, maybe i was getting better anyway, but I still feel that herbals are really NEEDED and important, to me at least. They help fill in some gaps. I can't tell you which would work for you, or which does what for me; i take a lot.
--- from Pamois.
Pamois- did you lose any hair?
Posted by cindy_leigh (Member # 3514) on :
day 3. So far, so good. I notied in the package insert it said not to take Xanax with the Biaxin, I think. I wonder why. I use it occasionally. (thanks, menopause!)
Posted by btmb03 (Member # 18394) on :
Hi Cindy,
Just following this thread since I might be on these meds in the future. Also popping in to wish you continued luck. You've got some great advice and look forward to hearing about your progress!! Enjoy the holidays!
Posted by pamoisondelune (Member # 11846) on :
Yes, i lost some hair. Yes, on the head, but not noticeable. Other places, some have never grown back.
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by pamoisondelune: Yes, i lost some hair. Yes, on the head, but not noticeable. Other places, some have never grown back.
Well, if i didn't ever have to shave my legs again, I would not be sorry!!
Posted by MusicMan (Member # 11966) on :
Hi there
Took em both for almost five years and I'm still here to talk about it.
Had on and off rough times with them and the Plaq caused some black pin size spots on my face after about four years.
On the 5th year I got Pancreatitus and my Gastro thought it was the Plaq so my LLMD agreed and I switched to Zith and Amantadine and have been on that for almost two years now.
If you start feeling too bad, take a week off and start again........still too bad take two weeks till you find the right times for you.
Good luck and I think you'll be fine.
Steve
Posted by KS (Member # 12549) on :
Biaxin and plaq. were horrific for me. I'm not sure what your story is but I was sick for 18 months prior to diagnosis and starting treatment. Prior to Biaxin/plaq I was on doxy (200mg/day) for a month and experiences a slight worsening of symptoms. About a week after being on the Biaxin/plaq I started to spiral downward. I thought for sure I would die!! Wound up in the hospital for almost a week. I was then put on IV rochephin for a month and later did another couple of months of biaxin/plaq. and never experienced that severity of symptoms again.
I'm not suggesting people not take it, just be prepared! I fear the symptoms I am left with today may be attibuted to this herx. as it was so severe.
Posted by pamoisondelune (Member # 11846) on :
About KS' post: she was on Doxy 200 mg a day for a month --- but that's like no treatment at all! According to ILADS guidelines, it's not strong enough to affect lyme! ILADS recommends 400 mg per day.
Then she started Biaxin/Plaquenil and had severe herx reactions--- naturally! I also started on Biaxin after a first few weeks on Doxy 400 mg per day (which had caused some bacteria die-off in the skin). I didn't take it with Plaquenil, but with VK Penicillin. The Biaxin had immediate and strong effects and caused strong herx reactions; but there was no Plaquenil with it.
About the fellow above who was on Plaquenil for several years--- Plaquenil is considered to be a strong drug; that sounds like way too long to be on Plaquenil without a break. The LLMDs i know of change drugs every 5 or 6 months, because it seems that the bugs develop resistance. Switching drugs gives a fresh attack and better success--- is my impression.
There was a thread about that--- one person said she had been on the same drug for a year and a half, and mention was made of a study that showed that switching drugs was more successful.
from Pamois
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by MusicMan: Hi there
Took em both for almost five years and I'm still here to talk about it.
Had on and off rough times with them and the Plaq caused some black pin size spots on my face after about four years.
On the 5th year I got Pancreatitus and my Gastro thought it was the Plaq so my LLMD agreed and I switched to Zith and Amantadine and have been on that for almost two years now.
If you start feeling too bad, take a week off and start again........still too bad take two weeks till you find the right times for you.
Good luck and I think you'll be fine.
Steve
Gosh Steve- first I hear my hair may fall out, and now black spots on the face? Enough to make me run screaming into the woods!
That's a long time for one abx regime- what sx were you hasing during that time? I'm working on a ventricular arrhythmia.
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by KS: Biaxin and plaq. were horrific for me. I'm not sure what your story is but I was sick for 18 months prior to diagnosis and starting treatment. Prior to Biaxin/plaq I was on doxy (200mg/day) for a month and experiences a slight worsening of symptoms. About a week after being on the Biaxin/plaq I started to spiral downward. I thought for sure I would die!! Wound up in the hospital for almost a week. I was then put on IV rochephin for a month and later did another couple of months of biaxin/plaq. and never experienced that severity of symptoms again.
I'm not suggesting people not take it, just be prepared! I fear the symptoms I am left with today may be attibuted to this herx. as it was so severe.
wow KS, that's terrible! I probably had undiagnosed lyme for 15 years. I was treated for two years with oral meds. HAd a ~85% recovery for about 3 years.
Got sick again starting around this past MAy. Biggest worry is irregular heartbeat. (Mostly PVCs) Benign, but annoying.
I just finished a month of Erythromycin. Now on these cyst busters that were specifically chosen for their ability to help the arrhythmia.
I herxed bad on the EES,which just proved to me taht lyme is indeed back. I started the Biaxin/Plaq at just half a dose a day for 4 days, just to see how I would tolerate it. So far, so good. Today I went up to the full dose.
What sx are you left with today?
Posted by Vermont_Lymie (Member # 9780) on :
This combo has been very helpful to me.
I herxed with both initially. It took about two weeks to get over mild dizziness with taking plaquenil; after that, no effects from plaquenil.
Biaxin made me very tired and sleepy for the first two weeks or so; especially the first few days. After that, just got the metallic taste in my mouth.
Good luck with it.
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by Vermont_Lymie: This combo has been very helpful to me.
I herxed with both initially. It took about two weeks to get over mild dizziness with taking plaquenil; after that, no effects from plaquenil.
Biaxin made me very tired and sleepy for the first two weeks or so; especially the first few days. After that, just got the metallic taste in my mouth.
Good luck with it.
Thanks, I've got that slight metallic taste/dry mouth already.
I'm not dizzy- I had that bad with the EES. Sometimes I'll take a little meclizine for that.
Posted by cindy_leigh (Member # 3514) on :
yesterday was my first day on the full dose. So far, so good.
Metallic taste and dry mouth? I can live with that.
slightly tired, but that could be anything.
Painful joints. May be the original lyme, could be the 14 degree weather!
Posted by Tick Tock (Member # 15948) on :
I'm on Biaxin, Plaquenil and Doxy since last spring. No side effects except the awful metallic taste. So, I chew pepermint gum all the time. Better if I keep my mouth hydrated. Also spicy things kill the taste. Try salt and vinegar potato chips if the metallic taste bothers you.
My hair hasn't fallen out although my teenage daughter did lose lots of hair before Lyme treatment. Cindy Leigh, I like the idea of not shaving my legs but the hair problem seems restricted to the top of the head, exactly where we girls want hair!
I just saw my opthamalogist today who looked carefully for damage from the plaquenil. There was none. It is rare but it's good to check.
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by Tick Tock: I'm on Biaxin, Plaquenil and Doxy since last spring. No side effects except the awful metallic taste. So, I chew pepermint gum all the time. Better if I keep my mouth hydrated. Also spicy things kill the taste. Try salt and vinegar potato chips if the metallic taste bothers you.
My hair hasn't fallen out although my teenage daughter did lose lots of hair before Lyme treatment. Cindy Leigh, I like the idea of not shaving my legs but the hair problem seems restricted to the top of the head, exactly where we girls want hair!
I just saw my opthamalogist today who looked carefully for damage from the plaquenil. There was none. It is rare but it's good to check.
wow, that's a long time for one regimen, isn't it? I don't think I'll be on this more than a couple of months. If I plateau, I imagine I'd be switched to a different cyst busting combo.
It's not cheap, is it?! About $300 for a month of meds. But the Mepron and Zith I took before was $1200 for 6 weeks. I'm so thankful we have insurance that covers it.
Posted by cindy_leigh (Member # 3514) on :
another thing i thought of-- does this combo make anyone else pee their brains out??!! Gee whiz, no pun intended, but wow, I'm constantly peeing!
I'm not retaining water, and I'm on a lower sodium diet because my BP has been mildly elevated.
Posted by pamoisondelune (Member # 11846) on :
C9ndy--- You say you will be on Biaxin+Plaquenil only a couple of months. However, it takes the Plaquenil longer than that to build up high enough levels in your blood to start working. There's no use taking Plaquenil for only 2 months--- that's not long enough to get any benefit from it.
Posted by MusicMan (Member # 11966) on :
Hi there
Yes I took it for a long time but I also took other things during that period. My problem is the length of time I had Lyme which was at least 20 years.
I have Fatty Liver and Barrett's now so my Doc has to try to find things that work and don't bother my stomach and also will work with the other meds I have to take.
So when I had to take a break from the Tet and other things I would stay on Biaxin because as my Doc said I needed to be on something.
I could give you the whole story but to be honest I just don't feel like typing it all out right now. I will be putting my whole story up on LymeFriends when I finish it and nope don't know when that will be.
Sounds like you're doing fine though and I'm glad to hear it.
Steve
Posted by cindy_leigh (Member # 3514) on :
quote:Originally posted by pamoisondelune: C9ndy--- You say you will be on Biaxin+Plaquenil only a couple of months. However, it takes the Plaquenil longer than that to build up high enough levels in your blood to start working. There's no use taking Plaquenil for only 2 months--- that's not long enough to get any benefit from it.
oh..... my LLMD did not mention that. I will definitely ask.
Posted by cindy_leigh (Member # 3514) on :
when did you all herx on this, how long did it last, what were your herx sx?
Yesterday, after an afternoon of shopping, I laid down at 7 pm for a nap. Was wiped out. Slept fitfully until 7am this morning. Missed all the wrapping and housecleaning!
I'm still groggy today- not dizzy, like with the doxy or tetracycline herxes, just profoundly fatigued. Like I'm trying to swom thru molasses.
I got tix to the Rockettes for tomorrow- I hope I'm not a zombie!
Posted by KS (Member # 12549) on :
Just checking back in and saw your question.....main symptoms I am left with is nausea 24/7. Nausea has always been my primary symptom but prior to treatment it would wax/wane and I would have some days of NO nausea.
The nausea I experienced a couple weeks into biaxin/plaq. treatment was relentless and was so bad that not only could I not get out of bed but I couldn't even take a sip of water. Since then, I haven't had a day without nausea. Granted it isn't as bad as it was 18 months ago.
Anyway, many people do fine on Biaxin/plaq and it is a combo used by many LLMDs.
Posted by mr al (Member # 18191) on :
I'm starting this combo with Minocycline in a day or so. I'll take one of each for about two days until i build up taking them all together.
Anyways, i'm glad you made this post. Continue to update it and i'll let you know how i'm doing as well.
Posted by cindy_leigh (Member # 3514) on :
boy was I miserable yesterday.
I was delighted to get tickets to Radio City Music Hall for Christmas- to see the Rockettes. All 5 of us went- kids are home from college. Fabulous!
BUT- after the show, we walked a block or two to a deli, and WHAM- I got shaky, dizzy, felt faint. Had to sit down. Couldn't eat. Thought I was going to vomit. It was scary.
I do not have low BP. Well, my BP always used to run slightly low. But for the last several months, my BP has been high. in the 140s. I dont know what was up, except that I was upset with myself and upset that it might have put a damper on a lovely day.
Lyme sucks!
Posted by laura j (Member # 14257) on :
Hi Cindy,
I did Biaxin and Plaquenil for 6 mos. and had no problems w/it. Just the bad taste in my mouth. Hope you do well w/it. Good luck!
Posted by bpeck (Member # 3235) on :
Hi Cindy (and others)
Just curious- what dose are you on of each? Biaxin and Plaq.
Barb
Posted by mr al (Member # 18191) on :
on both with minocycline for about a month now. No side effects or herx at all. I should no progress either lol.
Posted by ticked-offinNc (Member # 15420) on :
Heh Lymestop, I am taking this combo with Minocycline. For me it is a roller coaster,Really good days, then pretty bad days. But overall, I feel the most progress on this combination. I have been taking it for almost 3 months. I had a day last week that was wonderful.First time Ive felt like that in two years. It was joyful to feel alive.
Posted by janis1023 (Member # 15942) on :
Oh Tick that sounds wonderful. So glad for you that you were able to experience such a wonderful day.
I think I can see this in my future too.
The biggest lesson I have had to learn from Lyme is to be patient.
Posted by ticked-offinNc (Member # 15420) on :
Thank you for your kind words Janis and Lymestop. Your encouragement means a lot to me>
Posted by luvs2ride (Member # 8090) on :
lymestop,
I took 3-4000mg Vit C the entire time I was on Plaquenil. My doctor got a list each month of my supplements and she never said anything against the C.
Posted by luvs2ride (Member # 8090) on :
I took ammoxycillan 3000mg, biaxin 1000mg and prevacid daily. This was for H. Pylori. I also took Plaquenil during this time and Vit C as well as other supplements.
I did very well except I too would get that metallic taste sometimes. No other side effects noticed.
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