posted
I have been reading past threads about Factive and would like to hear from all of you who have tried it to find out what type of response you've had... Most of the old posts said you were starting but didn't say how well it worked (as it was too early in your protocols).
Please no posts about tendon problems. Although I appreciate the concern, I am already well aware of the risks.
My husband (djf2005) is scheduled to start Factive pulse therapy some time in the next few weeks. He is in pretty bad shape right now, but has responded well in the past to Levaquin and Rifampin.
I am also interested to hear how you responded to Factive verse other BLO drugs.
Thanks so much!
Posts: 9 | From West Chester, PA | Registered: Sep 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm so sorry to hear Derek is not doing well. I have no experience with this drug. I'm sure others will chime in. I thought he was at 80-90% of normal a little while ago.
Did something major happen? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Hi Care26, I have been on Avelox for 3 months. During the 2nd and 3rd month I pulsed Factive in for one week during per month. So I stopped Avelox for one week per month while on Factive. I did really well on it. No problems. and I did seem to make improvements. I still have some symptoms including pains on the bottoms of my feet, super itchy skin, and cognitive issues such as short term memory loss but it is an improvement from before taking the Avelox/Factive combo. No issues with Factive and it helped.
Posts: 31 | From Boston, MA | Registered: Jan 2009
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posted
I haven't taken it but I am supposed to start tomorrow. I have the same questions, and I'll be happy to share my experience once I get started. But where ARE all those people who started it? ecr1 are you still taking it? Thanks! Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Care26, I am going to reassess with my LLMD when I see her in a week. My guess is that I will need to still be on it for a bit longer. I have come so far. Symptoms started a year ago, completely debilitating, and I can now function. I still feel symptoms, but I feel like I'm on the road to recovery 1 year later. So, I'd like to make a strong push to put this thing to bed.
Posts: 31 | From Boston, MA | Registered: Jan 2009
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posted
I have been on a rotating protocol of factive and tindamax pulses for three months now. I feel better than I have in a while.
(Also I tendons are a concern so I will mention that I have been running and biking with no problem.)
It took a month or so, but when I started the combo I was low on red blood cells, hemaotocrit etc. Very low. But the RBCs came back fast. Call it Bart, or whatever I do not know what is happening but whatever it is it is good for now.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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I also take mino and zith. I think zith hits the bart, but is not enough (for me) alone.
My LLMD tried adding bactrim and plaq (one at a time) but I Herxed horribly and had to stop each one.
Factive gave me more tolerable Herx's, with UP time in between.
I started out doing it one week on, one week off. After 3 cycles of that without serious side effects, we (my LLMD and I) decided to to a solid month, 1 pill/day.
I'm more than 1/2 through that pulse, and am having my best days yet.
I was dx-ed/started treatment in Dec '08. I was undiagnosed for at least 1.5 years, likely more.
Good luck.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
My adult son and daughter have used Factive. Unfortunately my daughter broke out in a rash hours after her first dose and cannot take it.
My son has been doing well with it, He is pulsing it 5 days on 5 days off. He feels great when he is taking Factive. Next month he is starting it daily. It has helped his brain fog and fatigue.
Hope you get positive results with this.
Posts: 488 | From NY | Registered: Oct 2004
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posted
I have taken Factive everyday for the past 2 and 1/2 months. It's hard to say what it's doing right now, since I started IV rocephin. I did take it 1 month sometime back and seemed to notice some difference.
Have had no problems while on it.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Those were the ones keeping from life, and they are getting better and better. Fatigue was literally dragging me down, physically and emotionally.
I still have some weird sensory issues (like tingling) and some stiffness, but these are also getting better.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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i herxed in week 3 horribly.. after 1 week herx i was so down that i stopped the medication for 2 days. i feel better then before the therapy.. especially my headache is away.. after 11 months having it..after this i will treat with levaquin and bactrim + artemisin+ tetracyclin to rip off the barts..
greetz
Posts: 371 | From velocity of light | Registered: Sep 2009
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posted
joysie, it is hard for me to tell what Factive has done because I pulse Tindamax also. But I believe that it acts against bartonella/hemobartonella/mycoplasma. Before I started with it, I was so low on red blood cells, hemoglobin and hematocrit, with less each time I went to the lab. I was more and more tired and slower and slower on the bike.
Also the bottom left side of the rib cage was sore all the time. I assume it was the spleen, dealing with the exploding red blood cells.
Once on the Factive and Tindamax pulsed combo, the rib pain subsided. And labs from the end of the month showed a dramatic increase in RBCs, etc. I knew it, because I had started to push huge gears on the bike.
Most important for me is that I can think. I am not without problems, but I feel good for now.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Good to hear many are having progress w/ it.
Today is day 2 for me (care26) is my wife, I am fortunate enough to be able to get on for a few minutes today.
It flares pain intensely and other symptoms but I can tell it's going to help.
It's the only med I am on right now due to my sensitive state.
Bicillin is going back in when can be tolerated and then lots more...
Much love, keep sharing your experiences please.
D
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I am on day 4 of Factive. I also seem to have a viral something, so I can't comment quite yet on how I feel.I'm to take it daily. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Day 4 on Factive: Derek is herxing so bad that I called the doctor today. Five days on, nine days off is the new plan (instead of 320 mg/ daily).
Hopefully, things will get better soon. I know it is working because he is reacting so severely. We will persevere...
I'll post again if there are any changes.
Posts: 9 | From West Chester, PA | Registered: Sep 2009
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posted
I am on day 15 of factive, 7 days at full dose. I am tolerating it well although I have an increase in sweats (?). Not sure what that is about. Some other symptoms seem improved! How are others doing? Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Not real sure what to make of this med. Hubby started with Factive 5 days on and 10 days off. Seemed somewhat helpful. His RBC and WBC both went to normal -- one or the other had been low every time he had bloodwork done in the last 9 months.
Then the doc wanted to switch to a pulse rotating the Factive and Tindamax -- was supposed to be 7 days on each. Had a hard time with the Tindamax so we switched the rotation to 5 days on each. Has been on this combo plus Mino for 2 months.
Hubby ended up in the ER yesterday. I attribute this mainly to the Tindamax, but also feel like the Factive is not strong enough for the bartonella, BLO, mycoplasma or whatever mystery pathogen he has.
Hubby has an LLMD appointment with his doc next week so we will see what he suggests we do next. For now I stopped the Tindamax and will continue on the Factive daily.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Our family (4 of us) didn't find Factive strong enough. We switched to it from levaquin. because the side effects with levaquin are always a worry.
We did okay for awhile but then the bart symptoms gradually increased. We went back on levaquin and the worst of our Bart symptoms -- stomach problems, bone pain, mental and emotional problems -- were gone again. Levaquin seemed much stronger.
Posts: 27 | From San Francisco, Ca | Registered: Apr 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm going back to Levaquin I believe. I have a 3 month supply and can get more without issue.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
interesting what some of you say about it compared to levaquin.
levaquin was a wonder drug for me which is why my dr suggested factiv as he was having "great success" with it. (mike, same dr as u)
i relapsed on levaquin but didnt transition properly either so i wonder if using it again would bring great results again...
anyway, im one week into factiv and hoping it brings more improvement, relief, as it's still too early to tell..
is there anyone who found great success with levaquin, went to factiv, and then back to levaquin also?
just good to know i can use these drugs multiple times if needed, rifampin and levaquin both were the drugs i made the most progress on, rifampin the best, so we will see.
my gut tells me to return to rifampin but unfortunately there is no way to rush this long and painful (yet character building) process
just waiting and hoping and wishing for the time being.
hang in there everybody, BLO blows for sure and we'll lick it one way or another.
best
-d
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Bumping to see how everyone is doing. I also saw a post earlier asking if people were having trouble with Factive. I am on week 7. I think it has generally helped some of my neuro symptoms and my fatigue. As usual, can't quite tell if it is causing issues. How is everyone else? Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
As mentioned earlier -- hubby stopped the Factive and Tindamax rotation. Has been on Levaquin and Rifampin for a month now. He has not taken these 2 meds together before -- but had taken both separately.
Unfortunately it looks like the Levaquin and Rifampin combo is just not strong enough for the Bart or BLO or mycoplasma -- he has been having increased sweats -- usually a sign the meds are not working for him. Also bilirubin numbers keep climbing -- may be the highest he has ever had. Looks like the infection continues to kill off his red blood cells.
LLMD appointment is still 3 weeks away and not sure what else I can do at this point to keep him from crashing between now and then.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
I only did a month and moved onto herbs.
All rx options have been exhausted for the time being for me.
I will return to rifampin/etc if needed which is what worked best in the past.
I am hoping the NM herbs are potent enough, there is now a HH form from them also you might want to consider...
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
HH did not work for me. I was taking up to 10 HH-2 (equivalent to 20 HH) and relapsed. I am now on Rifampin. Was reading this post to see how this other drug works which I have not heard of.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I started the Factive/Tindamax rotation in August. September and October were awesome. The RBC came up to normal, and I could feel it.
Then in October a switch was made to address the lack of executive function. Less than a month later it seemed like the red blood cells were under attack, and the labs confirmed it.
I am back on the Factive/Tindamax rotation.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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posted
jmb, You have given me hope. I'm supposed to add Tindamax and I have been avoiding it. Bea, I send you and hubby my best wishes. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
This is interesting! I was just prescribed Factive/Tindamax to rotate. Factive is EXPENSIVE!!! Our insurance made us pay $25, which is what we had to pay for Mepron!!!!
BUT CVS told us Tindamax is being discontinued. ????
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I think Tindamax is only available as a brand name now and the generic is what was discontinued. Hubby had to get it from another drugstore (Rite Aid) 25 miles away. That store has a different drug supplier than the local CVS, Walgreens, K-Mart etc.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
kris don't take too much hope from me. like i said i am back on the rotation after i had some good times on it before. i have not started to feel better yet though. but yes, those were some awesome days. like one with 6 hours on the mountain bike, and i would've continued if i did not have a sitter booked for datenite with the wife.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
nefferdun did you try the Nutramedix formulation of HH?
posted
Factive pulled me through a respiratory infection when nothing else could . Ever since I contracted Lyme, it's only a quinolone that will get me through. It makes me wonder if it's actually a respiratory infection produced by lyme.
Also, though I get a lot of tendon pain while on levaquin, I experience no pain whatsoever when on factive. great drug! funny shaped pill Posts: 107 | From new jersey | Registered: Dec 2009
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posted
Where do all of you get your factive? My insurance co-pay is more than $200 for 10 days worth. Never had this problem with any other antibiotic, even Mepron!
Anyone know where to get cheap factive? Is your insurance copay that much?
Posts: 770 | From USA | Registered: Jul 2006
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posted
I am lucky, my insurance co-pay is $5.00 for 30 days. I believe the Factive has been helpful to me. However, I am also taking clindamycine, malarone, tindamax and Art, so it is hard to say what's what. I do not believe I am having particular side effects. Good luck Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
I have been back on it for less than a month and feel better. I am less tired, can think better.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I pulsed it and had no reaction or anything to report. nothing good or bad
Posts: 3905 | From USA | Registered: May 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi folks. I was "floxed" by cipro/levaquin in 2004. It took me 2 years to recover.
Now I have to ask, is this Factive a new quinolone? And do I gather some of you are using it for babs?
I'm just trying to read between the lines to get this information.
I am wondering....
If you are using it for babs?
If you experienced tendon damage in the past, but found Factive to be free of side effects?
I have not been able to touch a quinolone since 2004.
I have been treating my babs since 2002, and am just as severely infected now as I was in the beginning. Took three months off this summer...long story...and began from scratch in the fall with treatment again.
The post title was Factive for Bart. Not sure where there was a Babs reference with this abx. Yes it is a newer quinolone. LLMD (you know who) says he sees less tendon damage from this one.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
lymewreck, its for bart, myco, blo.
if you have crazy babs, consider lariam and new zhang cripto herbs.
there are new options.
ask Metallic blue, he has tx babs extensively.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I took factive for a severe ear infection and it hit my Bart. My LLMD had me try it again, but only for the normal dose you would give. I did not take it every day, only the term normal for any other usage of factive. Month one and two, it helped. Then the third month, nothing.
I did best on Levaquin for Bart, but then again, I have been told that I have 4 strains of Bart through ART testing, so I am not sure if it knocked out a couple of them or it went into remission while on it. I have yet to try Rifampin for more than 2 weeks because I think I herxed so bad, I had to stop. I also take Clonazepam, so I wondered if it whacked out my level enough to cause the shakes and anxiety.
Right now trying the herbal route of HH- Zhang. Herxing on it.
Posts: 19 | From New York | Registered: Jan 2010
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