posted
I am currently supposed to take 600mg twice a day of Rifampin for a total 1200mg per day.
My treatment has included:
400mg of minocycline per day for 3 months 2G every other day of IV Rocephin for a little over 3 months. 400mg of doxycycline per day for 3 months 500mg of zithromax per day for two months 400mg per day of Amoxicillin two weeks 600mg of lavequin per day for three weeks (came off due to side effects)
Mino and doxy overlapped with the IV. I also overlapped cats claw for four months in total.
My treatment started in July 2007. I had neurolyme symptoms undiagnosed since 2004 and started with regular lyme symptoms in 1994 when I was treated for two weeks with amoxicillin. The real lyme symptoms then gradually worsened from 1994 to 2004 when it went neuro.
I have lyme and a mycoplasma. Never tested for bartonella. Babesia was suspected treated and then tested with Igenex and was negative.
I had most of the symptoms on the list of 50 or so symptoms last year and still have: chostrochondritis, memory loss, muscle pain, tight joints, chronic conjunctivitis, memory issues, occasional mood swings, occasional pins/needles burning etc...
Anyway the doc prescribed 600mg of the rifampin twice a day but the pharmacy lectured me on the manufacturing warning not to exceed 600mg per day even though they filled it per the docs instructions.
So I am just wonderin if anyone did 1200mg of Rifampin per day during their treatment and/or if anyone has anythoughts on my treatment to date.
Also, I took the first dose around 6pm today and my eyes feel somewhat burny which I think it good since nothing has ever seemed to treat my eyes. I also feel some faint "new" kind of burning in the back of my neck, hands, and feet.
Thanks for any advice.
Posts: 48 | From New Jersey | Registered: Aug 2007
| IP: Logged |
Alv
Unregistered
posted
I have and am using rifampin.It is almost a year on it with an interuption for a month and than another month replaced with levaquin.
I used 600mg but on my own I even used 1200mg for 2 weeks.
I would suggest using rifampin with azithromax for a very long time with no interuption at least 9 months and than switch to levaquin....but not now...
YOu started 600mg of levaquin ( my suggestion is very high for starting killing bart) and it was to high for a starter ...I would have suggested 250 mg and work the way up .
I know it causes Tendonitis ( I had side efects also)...but for me went deep in the bone ( hips mostly ) and killed BART/MUCO that nothing could touch.
I HAD it for more than 30 years.
Had side efects on my left knee ...but will probably use it again ....
Read BARTONELLA , do a search here and find out other protokolls for bartonella.
Burning is b/c of bart.....keep treating and maybe you need to treat it even longer than lyme.....pending on how much your load is.
Do some search here to find other alternatives ....so when antibiotics stop you can still be in maintanance of bart treatment...
I have been treating it for 14 months and still have it.
Even though the major symtoms seems to go away or reduce I have noticed that once I stopp treating it , it comes back.So I am for the long run...on treating it!
IP: Logged |
posted
bumping to top in the hopes of anyone else that may have taken Rifampin at 1200mg per day (600 2x)
Posts: 48 | From New Jersey | Registered: Aug 2007
| IP: Logged |
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I took 1200mg Rifampin every other day (pulsing with 750mg Zith). I lasted 2 weeks as I, seriously, felt like committing suicide.
The herxes were HORRIFIC! My gut started to hurt as Rifampin is a big yeast maker. I had to make an emergency call to my LLMD because I couldn't stop crying and was all out of sorts, as well as planning my death.
He brought it back down to 600mg which is the normal dose to kill Bart/Mycoplasma.
If you can handle that amount, great because I feel like I killed a HUGE amount. Unfortunately, I almost killed myself, too.
What would that have solved?
I think it's too high and too agressive. i made it to remission on the lower levels but I made it in one piece!!
Just my 2 cents. Trust your gut (no pun intended).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
tailz
Unregistered
posted
If you don't want to take it, send it my way. My doc is treating me like a baby on rifampin (started me at 150 mg daily, and months later, I am only up to 300 mg daily).
I want more of it. More Larium, too.
But those docs are gods, you know, and I must bow down and worship their insights.
IP: Logged |
posted
All I can say is that you have a very very aggresive doc. There is no way hubby could take any of the meds at the doses you listed without taking months to work up to those doses.
He is finally tolerating Rifampin at 375 mg -- the highest he ever got in the 2 previous attempts over the last 3 years was 50 mg. He is trying to get to 600 mg daily over the next 2 months.
I think you need to be very watchful of your liver enzymes if you are taking something else with the Rifampin.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
seibertneurolyme:
Just to let you know I could not stand any dosage of any oral antibiotic although I can take any dosage of IV - My LLMD says he see this in a lot of patients, so perhaps your husband is an IV candidate.
I could not even take a sliver of Ceftin or rifampin oral although I am now on IV Ceftriaxone 2gms a day and 600mg IV Rifampin with 1000mg Glutathione IV to clear the herx.
posted
it appears to me that it really must depend on the individual (metabolism, immune system, bug load, ect)
we had a toddler on rifampin, i took a long course years ago, and so has/is again my son.
the drug in our cases brought significant improvement (particularly, return of personality, emotional balance) after an initial "angry herxheimer" period that lasted a couple of weeks. the symptoms were rough, but not unmanageable. it helped to know to expect it, we all had brain involvement with the infections.
rifampin can cause serious problems with liver enzymes in some, so is usually monitored for that, and it is very potent against bartonella and mycoplasma. so you're in for die off if you have those.
with my son's current course, there has been a more intense reaction that started a couple of weeks into the drug, so we're now investigating what is going on with that.
rifampin is also the recommended treatment for tuberculosis in adults and children, and that treatment course is for nine months, on average.
we were on a combo of rifampin and minocycline. the baby did zithromax with it.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
Hubby has done IV Rocephin and IV Primaxin both in the past. With both those meds I had to stop almost every single IV at least once to administer IV Ativan to control seizure-like episodes.
Last summer when hubby first tried to kill Bart he ended up in the hospital for a total of 78 days -- could not even tolerate 50 mg IV Doxycycline -- also tried IV Zithromax and IV Amoxycillin.
And he has been doing IV glutathione for over 5 years -- actually stopped this about 2 months ago. The time release brand of alpha lipoic acid he is getting from his new LLMD seems to be helping him make more glutathione.
Hubby's new herbalist helped me refine my recipe for "slime tea". As long as hubby takes this before meals he can tolerate oral meds -- we started with one med and he has worked up to his current combo of 5 meds over the last 5 months.
After 6 endoscopies in 7 years there is little point in checking again to see if hubby has active gastritis. Actually some of the Bart meds do seem to soothe and calm his G.I. The herbalist is of the opinion that hubby's G.I. problems are more a reflex reaction than an actual stomach inflammation at this point.
With hubby it has almost always been a vagus nerve issue. With Zithromax he has had some heart palpitations as well -- a new symptom. But after 2 months for some crazy reason increasing the Rifampin by 75 mg stopped the heart palpitations.
Hubby's typical herx reaction is nausea followed by dry heaves which sets off tremors, myoclonus and seizure-like episodes. I have read about the vagal nerve stimuator used for some epilepsy patients -- makes some patients better and others worse. With hubby it seems like the vagus nerve is hypersensitive and triggers seizure-like activity in the brain.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
I had a lot of problems with taking it, when I first started taking it, which lasted about 2 months.
They were mainly of the herx type though and although taking it is still making me herx, it's nowhere near as bad as it was then.
I recently just started taking Tetracyline, along with it.
My understanding is it's suppposed to make it work better.
Right now, I can barely tolerate taking 750mg/day of it, although I'm trying to slowly work my way toward taking a maximum of 1,500mg/day of it.
I have a standing order, at my local lab, where I go monthly to get a CBC and CMP done, among a few other tests, which are related to my use of heparin.
I believe it's very important, while you're taking anything to treat your tick bourne illnesses, to, at least, do that, since, for instance, taking rifampin alone can be hard on your liver.
That way, you'll, at least, have some good indication of how well your body is tolerating whatever it is you're taking.
I hope this helps you.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
seibertneurolyme:
I am so sorry your hubby has had such a terrible time and pray he see's impovement soon.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic