Saw doc today, very confused. My son who has been sick since 12/09, only neurologically, has been on 400 mg. IV doxy since 08/10, flagyl since 6 weeks ago.
Last week he became very moody, confortational, had to discontinue IV for a few days and cut back on the flagyl. Doc wanted to stop flagyl and continue on doxy only again. When I said that I didn't think doxy was doing anything and thought to just cut back on flagyl he then said stop both and just take rifampin (300mg daily). Said next month he wants to try him on herbal protocol.
This is our 2nd LLMD since 12/09 and son still getting worse, no better. I don't want to switch again but this doesn't sound right to me with all that I read. Am I reading too much? Should I just let the doc do his thing? Any insights?
frustrated
Posted by lyme987 (Member # 22148) on :
Is the rifampin IV?
Posted by LSG Scott (Member # 21624) on :
it might not be a bad idea to back off a bit and see if his attitude gets better,
heck the rifampin might still be too much that drug kicks, but it's a very good drug
take care
Posted by little_olive (Member # 28063) on :
No you definitely cannot just take Rifampin.
You can take Rifampin and Doxy together, but they are a very powerful combination, so start small! Or Rifampin and Zithro. I'm sure there are other combinations. But a definite NO to just Rifampin alone.
Doxycycline alone helped me a LOT, but if you've stalled out, perhaps adding the Rifampin could be good...just start very small, Rifampin herxes are extreme!
If it were me, and the problems were mainly neuro, as is customary with bartonella, I'd see what the Rifampin did. If he herxes on it (moods, tremors, headaches) you'll know bartonella is a part of the problem.
little olive
Posted by missing (Member # 22437) on :
Rifampin has been the best one for me.
It worked in 3 months, and got rid of a ton of symptoms!!!
I did it with Minocycline, and found it to be a great combo.
Then I went on to do MEpron and Amox. for a year.
So after a year and a half, I still have lots of pain, and lots of symptoms, but I have seen tons of improvement.
Posted by missing (Member # 22437) on :
Oh, but the herxes on Rifampin are bad.
You would have to keep a close eye on your son.
It gave me suicidal thoughts, and made me cry worse for a while.
Sometimes I would cry all day.
I was crying a lot before this treatment.
Now I never cry, even if I want to! ha! ha!
Posted by 5vforest (Member # 29365) on :
Don't let anyone on here scare you, everyone's reactions to drugs are different.
Drugs have side effects. There's nothing we can do about it. The little risk is well worth it to get better.
Rifampin and zith is a good combo, usually a bit easier to handle than rifampin and doxy.
I agree with olive, just Rifampin doesn't sound adequate.
Posted by deerose (Member # 27484) on :
I have been on rifampin in combination with other antibiotics twice in my course of treatment and I do not have severe herxes.
Just fyi. it works well for me. but everything I read in here and have experienced is that combos of abx are superior.
LLND switches me off combos of abx to hit the coinfections from different angles.
Can't tell if there are co infections by your post...
most find that treating coinfections is directly relative to progress
in my case for example bartonella needs to really get hit out of the way so the lyme is more easily treated. That can vary...but my experience and that doesn't count babesia and erlichia.
there are other protocols in place besides "just abx" that most people need to improve in the long run.
Detox comes to mind and diet and probitoics and supplements and so forth. Some forms of detox are essential for some people with certain genetics to enable abx to work properly.
search that or repost a question if you wish to pursue that.
I find much to my dismay in between bursts of hope that in all things lyme & co I have to renew patience time and again.
I also have discovered I have to keep my approach to healthcare givers... lyme
literate ones.. moderated to keep their alliance. there are momentary lapses. sometimes they are best guessing.
Lyme literate docs and practioners are people too dealing with a long frustrating illnesses which is different for each person.
and are sometimes seeming not to know as much as I do. I fully grant that is hard to accept and do but we have to take much more responsbility for this than formerly
in our healthcare and that includes how we manage the docs and/or other practioners.
I have two excellent ones but I need both and at times have to be tactful and careful between their approaches and knowledge.
It may be easy for some folks to say ditch them if they are lapses but not in my world where people of that lyme related skill ar e hard to find and I cannot go travelling farther than I already do.
that is not happening. so I have to add wisdom and tact to my treatment plan. a friend calls that "leading from second place".
we can spend many hours learning
and tailoring for ourselves in ways they do not, even with their range of expertise.
So I have found that I cannot fully depend on them hook line and sinker but at the same time I do very much need them in my corner.
so grace for the lapses and regroup to come at it in a way so minimize resistance.
Bluntly put...if you need them, be persistent but try to back out our frustrations with them and tactfully reengage them with a fresh approach.
Instead of making statements sometimes I frame something as a question when I darn well know the answer,(an my attitude is at th emoment that they should too!) just to get it ont he table. Just for example.
then I blow off my frustrations with them somewhere else. This is hardly all the time but it has been a useful habit to keep the machine well oiled...
something that arises and I have to be aware and respond accordingly.
It is all part of realizing they are not perfect and perfectly endowed with all knowledge and also they are not perfect people.
they also see themselves as the responsible and expert ones and with reason.
I haven't met one of those who is eprfect yet though.
I am not talking about a true incompetent or non LL doc...those avoid or fire of course wherever possible.
i think I would find a way to ask about this choice.
sorry long...
Posted by nefferdun (Member # 20157) on :
Rifampin works best with a macrolide like biaxin or zithromax.
It is powerful and when you are treating bart the herxes are very emotional (at least for me). This will pass.
Remember that the herxes and side effects from the drugs always beats the alternative of allowing the disease to progress.
Perhaps look for another LLMD as bartonella does not respond to herbal treatments. Herbs can be used in combination but these are stealth infections and need a nuclear arsenal to get rid of them.
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