caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I'll be going on rifampin and zith in a couple weeks. The only concern I have is neither cross the bbb unless there is "inflamation of the meningis"- ei- menengitis.
I'm wondering if anyone has done all three of these at once. If I can tolerate rifampin I really really want to stick to this. But if my menengitis starts up again I'm tempted to add doxy in an emergency if it won't kill me...
I suppose if I have menengitis rifampin would cross anyway, but I'd really rather not go there again...
So... anyone done all three and survived? er... uhmmm... was it somewhat less than fun?
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
up for the good caat
Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
posted
If you have never tried Rifampin, I would suggest starting it by itself at a very very low dose. Regardless of what you have read, in my opinion it definitely crosses the blood brain barrier in the absence of meningitis.
Hubby had an extremely bad herx reaction to 150 mg Rifampin one time daily -- his only antibiotic. He lasted 10 days and then after about 10 days off antibiotics took Cipro for 30 days at a low dose. Waited 1 month with no antibiotics to finally get straightened out before retrying Rifampin.
Is currently on Rifampin 75mgs and Doxycycline 100mgs -- both once daily. Has survived the 1st week. Will wait a week or two more before trying to up dose.
By surviving I mean that his tremors did not increase significantly this time (last time increased from 20% of the time to 80% of the time plus significant increase in seizure-like activity). However he does spend all afternoon in bed every day. It is way to early to say if the meds are really helping or not.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Sorry I actually have a question for you. I have recurring meningitis from the lyme and I will just be staring treatment late this week. Has it gone away for you on other treatment (the meningitis) and how long does it take. I've had it 13 times this year and really don't ever want to have it again in my life.
Posts: 68 | From USA | Registered: Aug 2005
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
thanks Bea,
yes, I will definitely start slow and only after 4 days of zith. but uhmmm... how do you interpret meningitis? Many people think it's a severe acute thing, but it's symptoms can be mild...
Can be as mild as a pressure headache or just a little confusion for some. Basically it just means swelling of the membrane surrounding the brain or swelling of the fluid in the CNS. Many degrees of it.
Niki,
I've kept the meningitis at bay with 400mg doxycycline for 3 years. 200mg will NOT cross the blood brain barrier!! Have done other protocols but still have meningitis when I stop antibiotics. Doxy has only held it at bay, but that's a whole lot better than meningitis.
It took 2 days for the ataxia to stop and about 2 weeks for my reading level to come back up and about 5 months for the meningitis to resolve *while on abx*.
It took me a long time but I had it bad and probley have had lyme & co-infections for more than 10 years.
You will probley herx if the treatment works. That means some of your symptoms will feel worse for a while because as the bacteria die they produce or expel toxins. But- it's definitely worth it.
Yes it stinks and it's scarey. I finally saved money to see an llmd and will be treated for bart and possibly babesia as well as lyme.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
>>>Hubby had an extremely bad herx reaction to 150 mg Rifampin one time daily -- his only antibiotic
ouch. I am really not looking forward to rifampin....
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
up please
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
posted
Thanks so much for the reply. I can't tell you the hope that gives me that something will really work to help the meningitis. I fell like if I could just get that to stop the rest would be bearable.
Posts: 68 | From USA | Registered: Aug 2005
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
That's exactly how I felt. The pain is nothing compared to that.
If there is any indication some of it is a viral source then it is possible that olive leaf would help the symptoms.
I recently was told of an herb I'm looking up tonight too, called Isatis. Seems people are experimenting with it with western nile and B menegitis. If you do try it **go to an experienced herbalist**- it looks like it can be dangerous used the wrong.
If it's lyme though, until an herb is found that definitely works I'd go with antibiotics... for sure. Absolutely for sure. think about co-infections too.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
Was researching some old threads on Rifampin last night and came across one that might interest the 2 of you -- this uses the 3 drug combo mentioned here to treat another possible Lyme coinfection -- Brucellosis. http://flash.lymenet.org/ubb/Forum1/HTML/014128.html
Bea Seibert
[This message has been edited by seibertneurolyme (edited 24 August 2005).]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
Very nice Bea, thanks so much for this!
Good. Another 200mg doxy to that would not be a drastic step in an emergency....
Brucellosis; ""The traditional treatment is Doxy, Rifampin and IM streptomycin shots but we replaced the IM with oral Zithromax. I took Doxy 100mg twice a day, Zith 250mg twice a day and Rifampin 600mg once a day for 8 weeks.""
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
posted
Thanks for the link and all the info. I felt like I was reading my discription of my symptoms of meningitis. Worth checking out as i grew up in Greece and ate sheep brain. As well as helped causterate pigs in Iowa. Definitly two of my most lovely childhood memories. If I go on that drug combo will it also knock out the lyme at the same time. Is it better to work up to the Pifampin. Why i it so powerful versus some of the other combos? If you do all three together please post and let me know how you handel it and if it works.
Posts: 68 | From USA | Registered: Aug 2005
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
Niki wrote;
"Thanks for the link and all the info. I felt like I was reading my discription of my symptoms of meningitis. "
Problem is a LOT of these diseases have VERY simular symptoms. And simular meningitis'. Hmmm... meningitisis? meningiti?
"Worth checking out as i grew up in Greece and ate sheep brain. As well as helped causterate pigs in Iowa. Definitly two of my most lovely childhood memories. "
ROTFLMAO !!! You are a riot Niki... Well, I never ate brains and never really castrated anything in my life (only in my dreams...)but I've butchered sheep and deer. And cleaned many stalls and ate raw butter... and drank from streams and lived a fun life in a port city... probley been exposed to every germ there is... I guess doxy is a good idea...
>>>If I go on that drug combo will it also knock out the lyme at the same time.
Might, but probley not if you've had it a while. Would definitely put a big dent in it though.
>>Is it better to work up to the Pifampin.
Because some people have a very hard time with it. Rifampin is an ornery drug I'm told- has a lot of interactions with other drugs too.
>>>Why i it so powerful versus some of the other combos?
It really isn't- it's just what *bart* is usually more susceptable to.
>>>If you do all three together please post and let me know how you handel it and if it works.
Oh, be sure I will. But it may or may not help- some people have bad reactions to certain drugs- some have good. And, it's possible we both have bart or brucella, but who knows really? the tests are so bad...
Did you get tested for bart and brucelosis Niki? I bet if you walk in and give a vivid description of castrating pigs (blood got all over my EYES doctor!!) they'd certainly test you for free in a free clinic.
caat
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
posted
I should try it anything free would be great at this point! Haven't been tested for any co inf yet just got the lyme dx this week.
The ID doc about keeled over when I told him I lived in East Africa until I was six. That and the discription of the tiki fly that laid eggs in my foot. Who's magets had to be scooped out. And the visits to the Kenyan buruea of Health for Yellow fever shots. I think I may just keep the sheep brain and casterating for the next visit!
His only reply was why on earth would someone take a child there of all places! I don't think he wanted to hear about the beaches, wildlife or cutural experience I gained
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
LOL, Niki, OK, That wins the gross out prize. that's even worse than the black and green rotten egg that exploded all over my supper, my clothes, my hair and the kitchen of the house I'm sitting last night. (My friend forgot to tell me the chickens had a "security" egg in there. )
Big Eeeewwww!!!! all around...
Thanks Lyme Ed. I'll probley have to bite the bullet though- about 4 days to ramp up if I can. I only have 3 months and my bones are effected.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
posted
"Other unifying charecteristics of the spirochetes include their resistance to rifampicin [5 refs]. Conseqeuntally this abx has been used as a selective agent in the isolation of spirochetes from a variety of enviroments."
PMID: 11075904, journal version may differ from the book version i have.
posted
Some other chronic pathogens may be suceptible to rif, and not just tick-borne ones. Chlamydia pneumoniae is of particular interest because it along with a spirochete has been observed in MS and Alzheimers - as have, respectively, a spirochete and specifically-identified Bb, which would both be suspected insuceptible to rif. All these findings are controversial and have been disconfirmed by other groups, except the MS spirochete which has not been followed up on at all since its rediscovery by the Brorson group in 2001.
Posts: 62 | Registered: Oct 2004
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
hodologica,
thanks, yes. Going after bart not lyme. And it's nice this should wack brucelliosis and chlamedia as well.
Just hope I can tolerate it.... fingers crossed for next week....
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
Here's an old post from someone that took all 3 at the same time for brucella.
AJ Frequent Contributor Posts: 905 From: San Antonio, TX Registered: Sep 2001 posted 22 January 2003 00:05 -------------------------------------------------------------------------------- Wow, lots of questions! I'm glad. Okay, treatment length is different for each case. I did 8 weeks and tests showed up neg at that point. We will continue testing at different intervals.
I'm not really sure of test result accuracy but I'm pretty sure it isn't a hider like Lyme. The lab my test was done at was Labcorp. I would not reccommend this lab for Lyme tests though.
The traditional treatment is Doxy, Rifampin and IM streptomycin shots but we replaced the IM with oral Zithromax. I took Doxy 100mg twice a day, Zith 250mg twice a day and Rifampin 600mg once a day for 8 weeks.
Siz, about the climate... Pretty sure it doesn't matter but may be more likely to be around states bordering Mexico as the disease is prominent there. Does that make sense? It is actually a cow, sheep, goat and dog carried disease so can be found anywhere.
Did I herx??? HUGE. I started the treatment in the middle of a big Lyme herx. The next week I felt pretty good. Then I got slammed again, real bad. I was happy to feel bad at that point.
I'm posting a long abstract now but a very good one. XO, AJ
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/