Biaxin and Plaquenil together? What was it like?

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KeepHope
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Date Joined Oct 2008
Total Posts : 222
   Posted 1/19/2009 1:06 AM (GMT -7)   
Looking for feedback

Post Edited (KeepHope) : 3/8/2009 1:20:41 AM (GMT-7)


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/19/2009 10:49 AM (GMT -7)   
I am currently on this combo and mino. It is a strong combo for me. I don't know what coinfection I have but I have more bart than babs but it's all a guess.

I think this combo has been the best I've been on. I've been on:

Iv rocephin and rifampin

Iv doxy and Iv zithro (this was good combo too)

Iv doxy and Iv Cipro (Didn't do much either)

Clindimycin and quinine

zithro and mepron (I actually got worse when on this)

Biaxin and Plaq and Mino (Biaxin and doxy then switched to mino for about 2mo and 1week. The last month and 1week added plaq.

I saw some good die off with just biaxin and doxy then I added plaq and had even more. My last herx was huge. That started about a week ago and I am finally feeling closer to normal. I think the plaq either did it or encouraged the biaxin better penetration into my spine bone tissues or joints or whatever you have around your spine bones. My whole spine burned for 2 days. Also my chest burned all the way down to my belly button. I looked up lymph nodes and actually I was burning anywhere the lymph nodes are located. So I am going to chalk it up to die off and that my lymphs were full of crap that needed emptied.

Long story short. This combo plus mino has been my best yet. Hope it works for you.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/19/2009 2:24 PM (GMT -7)   
I don't always end up with extra fatigue. Often just the extra pain and swollen feelings. As far as the die of -herx- I will have a few really bad days(like 2) then it'll take at least another 2 for the die off to clear. Then I'll have a few good days then I start the cycle again. It pretty much sucks.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/19/2009 3:11 PM (GMT -7)   
KeepHope,
I'm not having a very good few days either. But we have to keep hope and faith that normal life is possible again!! "With God, anything is possible".

I'm on Biaxin, Plaq, Cipro and Artemisinin. I never really had any notible herx when just on the biaxin/plaq combo. But I've never really been able to tell the difference between normal/usual lyme pain and fatigue vs. a herx. My on-again, off-again symptom pattern has changed though in the last 2-3 months. It used to be 4 bad -4 good, then 1 week bad-1 good. I just ended a 7 week good period of only minor fatigue, aches, etc. But the last 2 days I've been hammered hard!! I'm assumming its a big die-off phase. At least that's what I'm telling myself. That the pain is for a good reason. I pray!!! I'm just trying to focusing on the blessing of having 7 half good weeks!

The plaquenil helps the biaxin to work better.

Blessings and well wishes to us all!!!
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/20/2009 3:27 PM (GMT -7)   
The dose I think should go by weight but some docs just do the ave dose. I've heard biaxin should be 500mg for every 50 pounds. In which case I am too low. I need to talk to my doc about this. I am on 1000mg biaxin and 400 plaq. and 200 mino. I did not ease into them. I just took them full strength because I have been on abx for almost 2 years and the die off was not going to send me to the ER.

MountainBiker
Regular Member


Date Joined Dec 2006
Total Posts : 106
   Posted 1/21/2009 11:30 PM (GMT -7)   
Hi there, I have been on this combo for over three months and all is well-ish.  What I mean, is it can cause horrible stomach issues at first, which is avoidable if you take it on a full stomach (I mean not after a granola bar for breakfast type full).  You will have to get an eye exam every few months to make sure Plaq does not build up in your retina, which is pretty rare but very worth checking.  Other than that the combo seems pretty benign as to side effects.
 
Then there are the Herxes.  I never experienced them like I have while on biaxin and plaq.  Like clockwork, every 3 weeks BAM.  That's a good thing right?  They only last a few days....and uhh ohh, I'm due.  They are very pronounced and real, as opposed to somewhat false ones I think I experienced on other combinations of drugs.  There's no missing these.  Man, you know it when it hits.  Between these episodes I, for the first time in decades (yep decades),  have had long stretches on symptonless life.
 
Other than that, I really do think it's a wonder combination.  As has been explained by my Dr, it's a ocmbination that can be used long term, as in years with little risk (I do have liver function tests periodically) as well as the eye exams. 
 
Goodluck, it's good stuff.
 
 

MountainBiker
Regular Member


Date Joined Dec 2006
Total Posts : 106
   Posted 1/21/2009 11:36 PM (GMT -7)   
Ohh yeah.  My dosage is Biaxin 500mg 2xdaily.  Plaq 200mg 2x daily. 
 
 

MountainBiker
Regular Member


Date Joined Dec 2006
Total Posts : 106
   Posted 1/22/2009 1:32 PM (GMT -7)   
KeepHope said...
hello.. thank you for sharing that with me..
And hmm wow that is great that you have periods of "symptomless life" My goodness. I will be hoping for that for myself.

If in the past I have had HORRIBLE herx reactions to abx in general... . i was thinking I should just expect more of the same.. Hearing some of these stories gives me hope and the more I read the more I hear about this combo working for quite a large group.

Thanks for the advice on the empty stomach.. That is an issue as I am not hungry at all in the am
and I have a tough time even at lunch.. I snack most of the time and have maybe ONE meal a day.

I also have a very senstive stomach.. And that warning was well taken. I had an eye exam back in October so we are counting that as number one but I am going to have to schedule another anyway as I want to get some glasses... and the last place really messed them up..

I already have vision issue from abx therapy but no damage and I have heard this med can cause it but never read of a single case.

How long have you been on it? You did not mention this? How long did it take to work?
Well if you do have time to or see me asking. that would help too.

THANKS
Much

I have been on it for over 3 months...or is it 4?  I have been treated by an LLMD for almost a year now.  Over this year I have gone from rock bottom, to OK, to rock bottom, to OK etc.  It was not until the biaxin/plaq combo that I experienced longer stretches of normalcy.  The only thing I can say is that, at this moment, I honestly cannot pinpoint any symptoms.  I feel perfectly fine.
 
However....I am not better.  My immune complexes are still through the roof, some so high that they're above maximum, and my left pupil is still totally dilated.  A little background, my Lyme has been mostly neurological.  Go down the list and I have had that symptom (several times), from lesions on MRIs to total Bell's paulsey to loss of vision.  Those have cleared, most notably my vision and my mind.  They're both clear.  It's our hope that those immune levels will eventually lower to a point that my immune system can keep the Lyme under control, or kill it completely.  MOst importantly though, my qual;ity of life has improved vastly.
 
And like I said, be very careful with these drugs and your stomach.  You do not want to be stuck in traffic, at work, or in class...whatever until you get used to them.  Make sure you gorge at breakfast and take them with plenty of water.  Chow some acidophilus (I take them by the handful) throughout the day.
 
And ohh yeah, go to CostCo pharmacy, even if you're not a member.  I forget which of these two drugs is super expensive, but you'll save about 2/3 there as opposed to CVS. 
 
Goodluck.

LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 2:45 PM (GMT -7)   
Hi again,

well my happy 7 good weeks are very over!!!! I started feeling pretty crappy last friday. My dizziness, vision issues, severe pain and fatigue came back. I hadn't had any dizziness for about 3-4 months. What does that mean when neuro signs come back? Am I now resistant to the meds? yikes.

my doses are biaxin 500mg BID, plaq 200mg BID for Lyme,
cipro 500mg BID and artemisinin 300mg BID for bart and babs

mountainbiker - thanks for the eye info....I didn't know that about plaq.

lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 2:53 PM (GMT -7)   
oh, I forgot,
when I started the biaxin I had very sharp abdominal cramping that last about 4-5 days. I pushed through it, then it stopped. It also gave me that horrible metalic taste in my mouth for about the first 2 months. I did'nt start the plaq til 2+ months after start of biaxin. No noticable herx.

And yes, I agree with the taking meds on a full stomach!
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 5:19 PM (GMT -7)   
I haven't really considered a viral issue. hum?

All my symptoms now are just like they were in the first few months. Especially the neuro sx; symptoms. So I'm worried that maybe I'm developing a resistance to the meds now. I hope not!

The Valtrex has worked pretty good for me in the past. I've delt with cold sores my whole life, especially when smacked in the mouth, extra dry lips or sun burn. I have alot of skin damage from way too many facial sun burns. (I'm a red-head with fair skin who never wore sunscreen in my teens). So I wasn't surprised to have the +herpes test. But am surprised that I've only had one cold sore since my symptoms started in May, 08. But will totally start popping the valtrex right away. In fact, that reminds me I need a refill.

I hear you on the diet issue!! I'm still argueing with myself about the whole do I or don't I "really" have food allergies? I was tested, and all 16 were positive. That's to coincidental!

Before I found an LLMD, I went to my PCP and had her start me on the standard treatment. I started on Doxycycline 200mg daily. It was summer, I had serious sun reactions with it, and it was the wrong dose.
My LLMD started me on biaxin cause I'm allergic to amoxicillin and sulfa drugs. Biaxin is thought to help with lyme and co-infection. I'm not sure which. Biaxin's pretty strong and she wanted to she how I'd do just on that. Then slowly add others as needed, per symptom.

I don't recall having any herx after starting any of my meds. But keep in mind that I'm still confused between herx and die-off symptoms. Like right now I figure I'm in a serious die-off phase; with the increased pain and all.

Oh, I just remembered, i've tested pos for parvo about 3 years ago. And my LLMD just had me tested again. Cause you asked about the viral load stuff. I think if we really focus on all of the immune boosting things and keep our GI tract as healthy as possible, then that will hopefully allow our bodies to deal with any current virus'. Which I would imagine being hard to do when your WBC, white cell count is low already.
What's your thought?

KH, I noticed you have MVP and murmur. I do too. Biaxin and Cipro together can cause palpations and such. I had a whole cardiac workup to make sure my heart could handle it. I had several espisodes of palpations in the first couple of weeks using that combo, but now very seldomly. I just pay attention to my heart rate, that it's not too high.
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


LupnerRN
Regular Member


Date Joined Sep 2008
Total Posts : 350
   Posted 1/22/2009 10:06 PM (GMT -7)   
KH
I guess I don't really take viral issues into consideration because anti-virals are rarely very affective. They can only lessen a viral infection, but not really kill it off. Like a cold; you usually can only treat the symptoms. Virus' live inside cells, whereas bacteria attach to the outside of the cell which makes it much easier to kill. Antivirals have to be given the ability to enter the cell then kill the virus. This process has not yet been perfected without killing the entire cell in the process.

Anyway, a cold sore is from the herpes simplex virus. So once you've had a cold sore, your body produces antibodies that show up positive in tests. Same with any foreign organism that enters your body. It's very interesting though that almost all Lymies have had + EBV, HV, CMV, and parvo.??? It's too coincidental that we all been exposed to those virus' before. It seem's like an X-File. oooooooowww.

Thanx for the help with herx vs. die-off. I guess I thought they were two different things.

oh, sorry gotta go, CSI is on.
Lisa
11/07 symptoms start
7/4/08  IGenX LD positive,gluten sensitivity,low magn, low WBC's,+yeast/bacteria/tapeworm/roundworm, EBV,HHV,CMV,Parvo,
7/25/08 started on Biaxin
9/08 IGenX co-infections neg, but probable Bart, Bab, Erhl
11/08  Biaxin,Plaquenil,Cipro, Artemisinin,3 probiotics,Transfer Immune, Bcomplex,MultiVit,omega3,magnesium,
 


skigal
Regular Member


Date Joined Mar 2008
Total Posts : 79
   Posted 1/23/2009 6:21 AM (GMT -7)   
Does this combo (Biaxin & Plaq) help with Bart?  Also, Does Dr F in AZ recommend these two?  I think Snake had mentioned this combo along with Minocycline.  TIA for any info. 

Post Edited (skigal) : 1/23/2009 1:33:35 PM (GMT-7)


skigal
Regular Member


Date Joined Mar 2008
Total Posts : 79
   Posted 1/23/2009 1:45 PM (GMT -7)   
Thx for the info.  Im not on mino...would like to try the B&P combo with something else.  I'm scared of mino...took that before I knew I had Lyme at 200mg/day & had a severe skin allergic reaction.

skigal
Regular Member


Date Joined Mar 2008
Total Posts : 79
   Posted 1/23/2009 6:51 PM (GMT -7)   
I was just wondering if there is another med that would be good with the B&P combo.  Someone here is taking Cipro with that combo I believe.  That would be the only quinolone I would try...too scared of Levaquin.

snake1979
Regular Member


Date Joined Apr 2008
Total Posts : 282
   Posted 1/23/2009 10:07 PM (GMT -7)   
I never added Mino...was just suggested to hit it from all directions.  I really believe that Biaxin is a great drug for us.  I feel good right now, but I know I am not well.  The biggest problem with Biaxin is that it doesnt cross the BBB.  Molecule rating is over 700, so no chance.  Phinsvent is doing the right thing and that is why is he is so far.  He is using Roxithromycin which breaks the BBB.  Roxi has a very low molecule weight.  For example, I had to quit antibiotics for 1 week and at the end of day 4...I was exhausted.  At the beginning of day 5 and 6, I didnt want to get up out of bed.  Feet hurt really, really bad.  Six hours after taking Biaxin...felt better.  One day later, felt back to normal.  *My opinion*  I think that Biaxin works well against inhibiting gram negative bacteria...similar to Aminoglycosides which are bactericidal and bacteriostatic. 
 
The macrolide class is a great class and work very effectively.  There needs to be more research on antibiotics and research has almost stopped...because of money and greed. 

snake1979
Regular Member


Date Joined Apr 2008
Total Posts : 282
   Posted 1/24/2009 9:33 AM (GMT -7)   
Good info. I believe Peptides and Biofilms are the real problem. I think these bacteria have changed our immune system and it is not communicatiing correctly. Biofilms is probably the real problem.

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 1/25/2009 8:23 AM (GMT -7)   

Hello Everyone -- I read this thread with great interest and thanks for all that you have shared.  My 16 year old daughter has had lyme since July 08 (severe onset of symptoms) and was diagnosed officially in October with lyme and babesia.  She is taking Zithromax, Plaquenil, Mepron, and Artemisinin.  She has had very small progress (hair has stopped falling out, headaches don't always feel like she is being beat with a bat, menstral cycle is back to normal, and although she says that her pain level on a scale of 1-10 is a 12, she said it isn't as bad as it used to be).  She stopped walking in August, and cannot stand or walk to this date.  She is seeing Dr. J in Connecticut. 

We are going to see Dr. K in Connecticut for lyme neurology this week.  I am very excited because I have been told that he frequently changes the meds and likes the Biaxin/Plaquenil combo.  So I am hopeful to have her try this.  He also said that he sees a lot of children that cannot stand or walk due to lyme, and he gets them back in shape.

A couple of weeks ago we thought she had a bladder/kidney infection, so our internist prescribed Cipro for seven days.  She didn't end up having an infection, it was just the lyme migrating I guess, but the ironic thing was that she was a totally different person once the Cipro was added.  Her voice was at a normal tone, she laughed and was very pleasant, and her entire personality did a 360.  Has anyone else heard of this happening with Cipro, or was this just coincidental?  After she was off of it she went back to he way she was before.

I am going to mention this to Dr. K when we see him, but I thought I would see if anyone has noticed what she experienced with Cipro.  Thanks for any help.

Lisa


Maureen21
Veteran Member


Date Joined Apr 2007
Total Posts : 1599
   Posted 1/25/2009 10:19 AM (GMT -7)   
Lisa- seems like the cipro was really hitting the bartonella for her. If she did that well on it, I would definitely ask the doctor to consider adding this.

I loved the biaxin/plaquenil combo. I did great with this and it was my main lyme abx. treatment.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/25/2009 10:32 AM (GMT -7)   
I thought I should post on my progress with this. I need to get a hold of my doc because the last few days I've been taking the biaxin/plaq and mino my mid to lower back burns. Not like when I posted my spine burned. I'm convinced that was die off.

I actually think I may need to take a drug holiday as I feel I am getting poisoned by the meds. I hope he doesn't take me off this combo tho because it has done wonders for my neck, back and head. I am kinda frustrated. I find a great combo and now it seems to be poisoning me. I'll ask my doc for liver and kidney test and see what it suggests.

Anyone else have this happen after about 3 months on it?

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 1/25/2009 10:49 AM (GMT -7)   
Thanks for the info Maureen.  She has babesia, though, not bartonella.  Would it still work the same on the babesia?  I'm so new at this that I don't quite have it down yet which meds work with which co-infections.  Would she see improvement soon on the biaxin/plaquenil combo?  How soon did you see results?

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 1/25/2009 4:39 PM (GMT -7)   
Thanks KeepHope!  I will look at it.  It's a blessing to have this website.

snake1979
Regular Member


Date Joined Apr 2008
Total Posts : 282
   Posted 2/27/2009 8:00 AM (GMT -7)   
LuperRN - are you still combining the Plaquenil and Artemisinin?  What is your dosage and how are you feeling?  I am also on the Biaxin - Plaquenil combo.  Thanks.

ina
New Member


Date Joined Aug 2009
Total Posts : 11
   Posted 8/25/2009 2:00 AM (GMT -7)   
Hi everyone. For improving symptoms are you using a sauna/jacuzzi? I heard the bacteria dies at 40C. Hot showers helped me a lot.

Also, I read a research showing that human Immunoglobuline helps with neurolyme symptoms. Is this true for you?

Alex

ina
New Member


Date Joined Aug 2009
Total Posts : 11
   Posted 8/25/2009 2:03 AM (GMT -7)   
I forgot to say I am on Tinidazole, Cipro, minocin but still develop new symptoms. I have Borelia burgdorferi sensu stricto, B afzelii, B garinii. Have not tested for coinfections yet.

I understood that antibiotics work according to the borelia and coinfections and perhaps the strain of borelia is important to know what works best.
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