posted
So many of you are a wealth of knowledge...I have another questions.
Much of my lyme is in the brain. I have heard that abx do not break the blood brain barrier. But that flagyl does. Is this accurate? Flagyl does get into the brain to kill the spirochetes even in their cyst form? Am I understanding this properly?
As well...is there a general rule, for any of you who have already attacked the cyst form, or attacked specifically the brain...about the duration of time to treat "regularly" before targeting the cyst....my goal essentially, targeting the ones in the brain.
Am i just way off base in understanding how this works???
Thanks for any information you can provide.
Then my next question is...once the cyst form is attacked then theoretically the whole thing should be in remission, right? What complications can arise from attacking the cyst form, or from flagyl?
posted
Mine mostly is in the brain as well. It stinks i have had these blasted crawling brain sensations and parasite crawling feeling in the scalp since it began. Flagyl is tough and i was on it for 5 weeks you could tell it was hitting the brain where other antibiotics hadn't hit. I had to give it a break as i felt like i was getting so toxic and then now i am doing one week on and one week off with Rifampin. I don't know about how long i have read it can be open ended till symptoms stop i just started back a few weeks ago and it has been tough. Best wishes to you! Robin in Houston
Posts: 121 | From Houston, TX | Registered: Mar 2004
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You would think that what you are saying is correct. The Borrelia should all be gone if you are busting the cysts and flagyl is good at crossing the BBB (Blood Brain Barrier). There are still spirochetes that hide in the tissue and bone that are not killed.
I think you are on the right track with Rifampin and Flagyl if you want to attack the chetes in your brain. I just hope you can tolerate all of the die-off. I understand that it can get pretty intense.
Good Luck,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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I was advised that I will not be allowed on flagyl just yet, I have to be patient before I cyst bust. I wonder...is it necessary to cyst bust?
I contracted lyme when i was around 8 and have had it all this time, I turn 40 tomorrow!
I got diagnosed over the summer. Thank thank thank God for that!
I was really going absolutely crazy. Waking up in the middle of the night and crying from some kind of madness...not recognizing myself...well, many of you know the drill. I was definitely going to take me own life. After four months of treatment on abx, I no longer consider taking my life. I have not woken up in the night to cry in a good long while. Overall like that, I am doing better and have improved greatly even since Thanksgiving.
But, today as I was dribing home from a movie as I got to my street corner where my house is, I suddenly did not recognize where i was at all. The fatigue is whoa! Worse! Like I can't lift my hands. Numb legs frozen hands and feet. Pain, well, you all know the drill.
I am so impatient and want some sort of knowing that I will be well....in a way that will be a surprise to me.
So, I know there are no guarantees but there is a hope and I have heard a few beautifuyl and inspiration success stories here lately especially with the thread praying for biting back's son. That thread has giben me a new and incredible hope.
I just wonder of the natural progression at the best case scenario of the time it will take and what based on studies one can expect. After attacking cyst form and reaching brain...is there expected to be more???
I see myself getting better. How refreshing, althogh it is still extremely challenging.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, Painted Turtle.
I think you just can't skip the cyst-busting part -- so yes, it's really necessary. First, however, your LLMD may like to bring down your bacterial load.
Flagyl does not actually kill the bacteria; it just opens up the cyst, or little cell wall, AROUND the bacteria. Then, whatever other antibiotic you're taking at the same time -- for me, Amoxicillin, kills the little beasts.
Studies have proven that otherwise, they can lie there in their little cyst-like houses and laugh while you pour antibiotics on them all day long. When you stop, back out they march.
I SO sympathetize with you not recognizing familiar places when driving! That's extremely unnerving, I know! Not to mention terrifying at times. Make yourself some hints. Paste sticky-notes in your car. I would forget where I was going entirely. Or I'd remember I was going to the drugstore after work, and see a perfect picture of the drugstore in my mind, but have no idea how to get from here to there.
I've read that some on here use Flagyl for months. My LLMD let me "off the hook" in six weeks. I had a pretty awful mess of headache pain with it, after proclaiming myself cured before starting it. Hah! So I guess I had plenty of cyst form Lyme to be rooted out after all.
Don't be in too great a hurry - as long as you're treating, you're killing bacteria. This is good. This is going to make things a little easier when your doc DOES put you on Flagyl. He may be waiting for you to reach a kind of "plateau" first before attacking the cysts.
Four months in treatment really isn't long in terms of Lyme disease. You might be treating a while longer yet! I was only sick a few years. In seven months of treatment I am TONS better. Since you're already somewhat better in four months, imagine how much better you'll be in another few.
Please hang in there!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Why is anyone still using Flagyl when we now had Tinidazole/Tindamax? Do some doctors thing Flagyl works better? For me, I am missing the logic behind Flagyl when there are much better tolerated drugs available with, to my understanding, the same or better effect.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I'm about to begin a 5 day round of Flagyl just for the purpose of getting some bB into my urine for Igenex test. My LLMD wants the DNA so he can determine the best course of action. I felt the same as SFORGREN after reading some of the horror story experiences with Flagyl. However, in researching Tinazidole v Flagyl I do not find the symptoms to be better but rather shorter in duration because less Tinazidole is required. It seems to have a longer acting ingredient than the Flagyl. Of course, I'll take "shorter in duration" symptoms. I plan to call LLMD today to discuss. I hope he is not still closed for the holidays.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I am also trying to sort out this cyst vs other form info. I have had Lyme (that I'm aware of) for 2 1/2 yrs. I've been on a number of abx for 1yr with improvment, not as much as I would like but I have found that Lyme recovery, for some, is a very slow process. My llmd just started me on Flagyl I ramped up slow but after 2 weeks I felt almost (operative word) as bad as I did 1 yr ago. He told me to back off for a week and then bulit up the dose again. He hasn't put me on any other abx, which makes me nervous, if I'm opening the cyst with the flagyl what is killing the ketes?
Posts: 69 | Registered: Jun 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
quote:Originally posted by SForsgren: Why is anyone still using Flagyl when we now had Tinidazole/Tindamax? Do some doctors thing Flagyl works better? For me, I am missing the logic behind Flagyl when there are much better tolerated drugs available with, to my understanding, the same or better effect.
I think there are two reasons Flagyl might be preferred.
Cost.
Individual response.
Not all insurance will cover Tindamax, and Flagyl is much less expensive. And no matter how good a drug may ne, some people won't do wel on it, so it is always useful to have options.
posted
Michelle, thank you so much for your encouragement. Seems like these days I keep losing my words which is very embarrassing. Plus I am fatigued more than I could have ever imagined a person could be. The arthritis and teech pain has returned too. Plus fever flushing and nausea. I start to wonder if there will be a place on the other side where true full healing is. I would hate to imagine if this losing the brain connections not finding simple words for things like garlic gets worse! I am too young for this.
Nancy, it does seem you should check with your lmd about abx in combo with flagyl if this is the method.
I have a ways to go befroe I start to cyst bust. I'm having a pretty hard time here on bicillin injections and ketek combo even though I was doing better for awhile and although still overall, I have seen good improvement in my mental and emotional life.
Sometimes I think it would be better to stop the abx all together now because I am sooo tired and I feel that some of the things I experience are side effects of them. I just hope it works and is worth it in the long run.
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Hang in there, turtle! Guess we all need to keep positive thoughts going.....
Thanks for all the encouragement, Michelle.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by painted turtle: Michelle, thank you so much for your encouragement. Seems like these days I keep losing my words which is very embarrassing. Plus I am fatigued more than I could have ever imagined a person could be.
Turtle, hang in...! Better days are really ahead. I was SO where you are at four months of treatment. At six months, I was in a "whole 'nother place"!
I too found that losing my words and brain-power was mortifying.
I would try to 'fake it' or bluff my way though rather than admit.
I would pretend I just wasn't paying attention when I would get lost or be unable to find familiar places, rather than admit.
I don't know why it's relatively easy to admit to physical pain, but extremely hard to admit to cognitive stuff, but it IS. :-(
Sometimes just telling my doctor about how the past month went and some of the stuff I "faked" my way through would leave little tear-trails down my face, to my surprise - in spite of usually being quite stoic. Then that would embarrass me, too!
I rarely even "admitted" to my boyfriend, fer cryin out loud.
I think this fear of admitting is part of the need to keep things appearing as "normal" as possible, mainly for everyone else's sake.
Oh, eventually they all caught on to me... And in fact, they'd caught on quite some time back, but had been too polite to say so. :-)
Try your hardest NOT to be embarrassed. Remember, you have a brain problem. If you were in a car accident and had brain damage, you wouldn't be embarrassed. A borrelia infection is little different. People WILL understand and deal with it, usually with compassion.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Blood Brain Barrier abxs From Newbie Links page two.
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