dbpei
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I tried herbal route and alternative treatments for past few years and feel I am not making progress. So I have decided to give aggressive ABX treatment a try.
I have been taking malarone and tetracycline for almost a month and have been on IV rocephin almost 2 weeks. I can tell this trio is hitting my problem area (head, brain, ears, sinuses).
I am going to start pulsing flagyl and I am so scared of what to expect. I have never taken a cyst buster like this, although I have taken rifampin and rifabutin, orally in in the past.
If anyone here can share their experiences with IV flagyl, I would so appreciate it. It seems to be a pretty powerful drug, especially when admninstered through IV. Thanks in advance for any advice or shared experiences.
Posts: 2386 | From New England | Registered: Aug 2011
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Oral Flagyl did a number on me, but it was prescribed by a well-meaning GP and it was too aggressive a dose to start without easing in. 400MG per day with no support.
I felt like I had been hit by a truck, so tired, with stomach pain, nausea and diarrhea.
As soon as I went off of it, I felt better, like the very next day, so that could be encouraging. I think if I had eased into it with a lower dose, and with the liver support, probiotics, etc. that I am on now, it would have been more tolerable.
I'm scared to go on Dapsone, which I start today.
Good luck to both of us!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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dbpei
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Sorry to hear about your experience with Flagyl, jsnyde2. That is what I am afraid will happen to me too, especially taking it intravenously. My LLND says it is more likely to pass through the blood brain barrier this way and it will help me more.
I am going to try my best to detox by drinking lots of water and taking binders away from my meds (a challenge!)
Good luck with Dasone! I can understand that would be very scary too. I hope we are both able to make some good strides with what is ahead for us!
Posts: 2386 | From New England | Registered: Aug 2011
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Begin with TINY doses. My LLMD tells patients to take a SLIVER of a tablet and work their way up.
IV .. no way.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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dbpei
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Oh dear Lymetutu. My visiting nurse is going to administer first IV dose, so I don't think I have a choice on amount. I told my LLNP how scared I am. She told me to expect to herx the same way I would with other new ABX.
It is going to be pulsing for just 2 days on and 5 off. Maybe that will make things a little easier. I'd better be prepared to stay home and rest/detox on those days. Posts: 2386 | From New England | Registered: Aug 2011
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I think the pulsing will make it easier to take.I was fine until about the 3rd day, then it all came crashing down. And I was taking big doses, but don't know how the 400MG dose compares with IV.
BUT, I think my reaction was all major herxing. I think it was doing some major cyst busting, and that is what we want! Let us know how it goes. Good luck.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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me
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I was fine for about the first week then it hit me hard. I was doing IV flagyl along with other aggressive treatment. I backed off the flagyl for a few days after it hit me, started again, and it didn't hit me hard. However, I was on aggressive treatment for about a year prior to starting the IV flagyl.
The beginning of my treatment was definitely the worst as far as herxes go, but they have become much less intense over time.
If the herxes are bad, definitely call your doctor so he or she can adjust the dose. I hope you start feeling better soon!!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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dbpei
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Me, were you pulsing the flagyl while on IV? Or did you just have to take some time off for a while and then go back to it? Thanks for the good advice.
I feel like I am on aggressive treatment already. (malarone, tetracycline and IV Rocephin). The rocephin made things worse at first, but now I am noticing that my tinnitus is getting quieter and it feels like the sensations are changing in my skull, ears, jaw bone and facial nerves.
I get more tired and feel like my back and ribs will give way if I can't sit down in the afternoon. I've been crying easily too. I think that is part of the herxing.
I will try to write about my experience with the flagyl and maybe it will help some others. What a journey this is...
Posts: 2386 | From New England | Registered: Aug 2011
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me
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No, I was not pulsing the flagyl. Doing it daily and it just hit me one day hard. So I stopped treatment for a few days and then went back on it. I've only stopped treatment a few times for a few days.
Do you have babesia? Crying/weepiness is a classic babesia symptom.
Yes, this is quite a "journey." It's made me a better person, but it's one heck of a journey. Hang in there.
Do you have someone who understands who you can cry to? It always helps me when I'm having a bout of weepiness to cry to my best friend who sticks by me (so many haven't understood and I've lost them) or boyfriend. I coached my boyfriend to give me a hug and tell me it's all going to okay, and that usually calms me down. Or a klonipin if I just can't seem to shake it
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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dbpei
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Thanks, me. I have never tested positive for babesia but I am being treated for it because some of my symptoms fit the bill. Perhaps the malarone is stirring things up.
I am fortunate to have a supportive husband, who does what he can to help me feel better. He lets me cry and gives me a hug to try to make me feel better. But I cry alone a lot of the time too.
Thanks for the kind support.
Posts: 2386 | From New England | Registered: Aug 2011
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dbpei, welcome to the cry group. Although i don't cry every day anymore like I did 6 months ago... but it's hard.
I've taken oral tinamax which is also a cyst buster. I herxed, but it wasn't horrible.
I don't have experience with IV flagyl. Sorry.
Hang in there.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
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Dpei, sending hugs for when you cry alone. Those aren't fun times. Keep us posted.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Flagyl works. Without a doubt it is the single drug family which has always helped me dramatically when added. Now I have to add the caveat that it is a living hell to start taking. The pills are bitter, they make everything you eat taste different the entire time youre on, and it causes dramatic herxes. But man does it work. You get used to the taste stuff over time.
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dbpei
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That is good to know that flagyl helped you too Christopher. I just completed 2 days of IV flagyl and survived.
I have pretty persistent bone pain (and squeezing and other odd sensations) in my skull and jaw. Even my gums and teeth are hurting. I have a strong metallic taste and it feels like there is some weird type of drainage going on in my gums.
I would assume this must be herxing. I pray that in time, I will start to notice some improvement. It would be hard to have to take this daily!
Posts: 2386 | From New England | Registered: Aug 2011
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me
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I had some minor jaw pain along with increased stiffness and pain in my neck and upper back. I also had the metallic taste. I changed from IV flagyl to oral flagyl and still have the metallic taste.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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dbpei
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Gee sorry you still have that metallic taste! Maybe it is a common side effect. My neck has been tight and acting weird too. I guess it could all be related.
Posts: 2386 | From New England | Registered: Aug 2011
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So I have decided to give aggressive ABX treatment a try. 
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