posted
I did a search and read through a bunch of old posts, but thought it might be nice to get coping recommendations all in one thread.
My LLMD has me dropping the 500mg zith, 300mg doxy and 100mg amantadine in favor of just Flagyl. Should have it in hand tomorrow and am, frankly, scared to start it after reading about how tough it is on people. I asked the pharmacy to give me the brand name because LLMD said it can be easier on the stomach.
Here's what I know so far:
No alcohol, even mouthwash, or I'll vomit - anything else that should be avoided? advil? tylenol? benadryl?
Start slowly - he has me starting with 250mg daily and ramping up to 750mg daily as herxing allows me to increase the dosage - I may start with 125mg after reading all the posts, though
Coat the pill in yogurt/olive oil to prevent coating the tongue with nasty pill taste - any other ideas about this issue?
Follow the yeast diet strictly - major yeast problems with Flagyl
Is Flagyl alone a good treatment option? I've read that it should be done in conjunction with abx - bust the cysts with Flagyl and kill the 'chetes with abx. Anyone else done just Flagyl?
Anything else, Flagyl folk? Thanks for helping.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Do NOT consume ANY alcohol when on this drug...is perhaps the most important thing to know.
There is an expensive 3rd generation of the same drug. It is called Tinidazole and seems to be easier to tolerate.
Usually, insurance companies would rather you use ( far cheaper) Flagyl.
This drug looks to be working by blocking the P450 enzymes in the liver...and as such...blocking the breakdown of alcohol.
Flagyl + alcohol = alcoholic POISONING...like being a college kid and drinking WAY too much.
Alcohol alters lipids (fats)...such as those in Bb's outer cell wall...which theoretically will destroy Bb or alter our response to a "different" cell wall "appearance".
It impacts OUR lipids too. Our cell walls are lipids.
As a protective measure, and PLEASE run this by your doctor...vitamin E might help protect cells that are NOT infected. Get a natural kind...one with "d" and all the types of topocpherol (alpha, beta, delta, gamma). Gamma E by Jarrow Formulas is one.
It looks to be okay to combine this abx and vitamin.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I've only heard of Flagyl being done in conjunction with another abx. But maybe your LLMD just wants you to start just on Flagyl so not to cause too big a herx?
I had no problem with the taste. I just swallowed it like any other pill. Of course, I'm an expert at that now.
It's just the alcohol I know of to avoid. If you take any liquid medications or herbs, check for alcohol content.
My biggest advice, is be prepared for a really nasty herx. Not everybody has one, but mine hit within hours of taking the first pill and was the worst herx I've had.
I took it in the evening and was up all night in severe pain. I actually had liquid in my joints just a few hours after I took the first pill, so I know it wasn't in my head. I could hear the liquid squish when I bent my knees.
Flagyl also caused insomnia the first few times I took it.
I started taking Flagyl just once a week. I think I eventually got up to every other day before my LLMD had me stop. She thought the pain was too severe. But pain is also my worst symptom, always has been.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks, Marnie. He did mention to take a good B complex, but I need to call and ask him about other herbs I'm taking right now (artemisinin, artichoke, olive leaf), so I'll ask about the E when I call.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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quote:Originally posted by Aniek: I've only heard of Flagyl being done in conjunction with another abx. But maybe your LLMD just wants you to start just on Flagyl so not to cause too big a herx?
It's just the alcohol I know of to avoid. If you take any liquid medications or herbs, check for alcohol content.
My biggest advice, is be prepared for a really nasty herx. Not everybody has one, but mine hit within hours of taking the first pill and was the worst herx I've had.
I'm going to ask him about why just Flagyl when I call in a few minutes. I need to ask about some herbs I'm taking being a problem with the Flagyl. I can understand about not causing a huge herx, but if I'm busting the cysts and not killing the 'chetes, what's the point?
Glad you mentioned liquid meds - I sometimes take a red root tincture that is clearly off-limits for now!
I think I'm going to start on half a pill first and see how it goes. I have two kids and a husband to take care of, so I can't be totally down and out.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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posted
Flagyl was too rough on my stomach and I switched to Tindamx. I remember being wide awake at night too, for a while - almost in an excited way: maybe my body was happy I was on Tindamax?!
Extra B vitamins are needed. Also, when I got a tingle in my face from Tindamax, they upped my B6 even more and the tingle went away. Do not take vitamins within 2 hours of the meds.
I take Tindamax with Doxy: the best combination for me, made a huge difference when Tinda was added to Doxy. So you may want to do the reverse - get used to Flagyl then add something else; I know Biaxin is another one they use with Tinda.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
Also be aware that flagyl can cause depression to the max!
As for taking only flagyl....This is what my LLMD has to say on the subject:
"The Norwegians also discovered that if a patient goes off antibiotics for a week, a one-day-old cyst form of Borrelia burgdorferi would convert to a spirochete form.
If the cyst is 5 weeks old or older, after a month off antibiotics the cyst will transform into a spirochete.
In the test tube, flagyl kills the cyst form, but not the spirochete form. But the problem I have with that is that a lot of my patients are getting better with just flagyl. The human body is not a test tube. Maybe flagyl kills the spirochete from in the body, or by killing the cyst form your immune system may do a better job killing spirochetes.
It would appear that an antispirochetal antibiotic would need to be added to flagyl. But other antibiotics cause the spirochete to turn into a cyst form. This may be shooting ourselves in the foot.
But some of my patients have required adding a second antibiotic to their flagyl. One of my jobs is to figure out what to put with flagyl, if anything.
Think of the cyst form and spirochete form like a caterpillar and a butterfly. They are the same organism but in different forms. Except cysts and spirochetes may change back and forth."
--------------------------------
From lymetoo: You may want to consider beginning with that 125mg or LESS! .......Do not take this as medical advice, OK!!?....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Flagyl was the most effective of all the abx I have been on. (I took it with zithromax) However, after 6 months it was also the worst for depression, and for mouth (black tongue) problems. So be sure to take lots of probiotics. If I had known about Theralac then, I might have been OK.
We stopped after 6 months and hoped I was "cured". However, symptoms came back, and I am still searching for the cure. I am much better though, and I had gone 8 years untreated, so it could do the job for you!
Ann
Posts: 287 | From Northern California, USA | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
ALl of a sudden it can hit you- suicidality!! And if you are on Flagyl- 9 out of 10 times it's Flagyl!!!!!!!!!!!!!! SO GO OFF IT if you suddenly feel like life is too much!!! Because it will feel REAL- but if you stop the Flagyl it will most likely be gone in a week or two!!!! Just be careful!!! It can really help though!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Tastes like absolute crap, didn't really herx all that bad, and it is better for your stomach becaused it's also used to treat C. Diff. which is the problem you get when you take too many antibiotics and the bad bacteria take over.
DO NOT DRINK ALCOHOL.
-------------------- Never walk through a cornfield backwards.
posted
Flagyl does in fact taste putrid and the taste lingers...
It caused serious teariness in me. My husband would be talking to me and suddenly realize that his innocent words had started me crying. I was pathetic. It made me a basket case. Maybe my doc started me too high. I was at 1,500 mg/day. It made life rough.
My poor friends and family did not know how to console me. But I was never suicidal and to be real frank here, after months of knowing I was sick with lyme and not getting treatment, it was a relief in a way to cry and release the pain.
Posts: 48 | From Wisconsin | Registered: Sep 2006
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posted
I took flagyl gyl for 4 months b/f llmd switched me to alinia (similar to tindimax) but need to take only 1 a day.
Flagyl & tindimax & alinia don't just chase the cyst to spirocheete form; they in fact degrade the cysts. I found some neat pictures of a lab experiment & gave them to my llmd
The pics show the spirocheetes encased in the cyst form b/f dilution with tindimax & then after. b/f there are up to five intact keets in each cyst. the after pictures show the keets all fragmented & broken up.
So in the lab, tindimax (& apparently Flagyl & alinia) degrade the spirocheetes hiding in the cysts. The theory then is to use abx (eg doxy) to create an inhospitable environment in you blood, tissue, brain, etc and chase the keets into cyst form.
then the cysts busters degrade the spirocheetes hiding in the cysts. Go through the cycle enough times, & we should be rid of these bugs. That is my treatment plan. Been on it for 6 months & the good days are now measured in actual days, not minutes or hours
Btw, i have neuro lyme symptoms (muscle twitches, burning skin, floaters in eyes, flashing lights, dizziness) Flagy metabolizes in your body in a way that can cause or acentuate muscle twitches, etc.
So if you have neuro symptoms, be careful with flagyl. My dizziness has been gone for several months, the floaters & flashing lights are much less frequent. So, i believe the treatment plan is working.
Good Luck.
Posts: 213 | From ohio | Registered: Jul 2006
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posted
We found that taking flagyl with orange juice made from concentrate seemed to make my daughter nauseated. Fresh squeezed OJ didn't--or other beverages--didn't seem to cause this problem.
Posts: 991 | From California | Registered: Feb 2006
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posted
I have been on flagyl / oxytetra - combo for 4 months now and it has def done wonders to me. The first three months were horrible to say the least. My mind went crazy; I would get this strange thing going on in my head - when I would talk to someone I would see a keyboard in my mind, and type the words that the other person said. It was really tireing!!
I also got that "wired up" - feeling. My mind and body would feel so stressed, I would dream vivid dreams, sleep for only a few hours.
It was really good to be prepared that Flagyl could cause all this. So it didn't freak me out too much. I had one bout of depression, apart from that I did my best not to put myself in stressed situations - as I noticed that I wasn't quite myself.
When it finally passed I felt so much better. Now I am getting used to the feeling, but at first it felt like someone had given me anti-depressants. I felt so GOOD!
Good luck!
Posts: 155 | From Norway | Registered: Jan 2006
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posted
I have to second the experience of literally bawling on this abx and when not taking it I was myself. There was not a day that went by that I didn't cry more than once.
You absolutely feel justified in your thinking when taking flagyl, you feel sane...but suddenly, the world is not ok, everything is wrong, people are against you, nobody loves me.....that just wasn't me.
It's as if you are hyper-hyper-sensitive. I never reached the point of being suicidal, but it for me was profound.
I suggest you let those around you know what to expect in these terms. It can literally throw you off the deep end and you need a support team to bring you back up to reality
posted
Oh, yes, tutu, I'm here. Just reading eagerly and soaking all the info in.
I took the first pill (250mg) a little more than 1 1/2 hours ago. I'll post later and let you know how I am tonight.
Thanks for your support, all!
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
My pharmsist told me to be careful also with any cold medications ect.. that might have alcohol. Or foods that may have alcohol as ingrediants in them too.
In the beginning couldn't swallow bigger pills so had to chew, nasty taste. Had some powerful herx's on it & feel it did help.
I always took it with other abx. Don't know if it was the flagel or abx but wasn't easy for me to handle stomach wise. I switched after a while to tinnie which worked well & did not upset my tummie as much. I made sure to take it with food. That helped some.
Everyone different but it did hit me quite soon after taking it.
Good luck to you Penn. Hang in there Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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You can imagine how I reacted when, taking the 1500 mgs/day of flagyl, I was called in by my principal and given a memo of insubordination for not attending an after school staff meeting.
I felt the world WAS against me. Here I was sick and scared and herxing all over, trying to stay at work so my students wouldn't do without speech therapy... and needing the rest after work so bad. And she slams with me insubordination!
Yes, I got that memo to the union and had it taken out of my file, but the damage was done and I went on medical leave after that.
Posts: 48 | From Wisconsin | Registered: Sep 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Gosh, Cheryl.......I can't imagine taking that high of a dose! I'll bet it did hit you hard.
Flagyl really hit my hubby hard when he first started it early last year. He just took small pieces of it...but still had big herx.
He pulses it now with Mino and Zith. Doing better all the time!
Be careful with it...you can really herx from it. Everyone is different though. Good luck!
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Well, so far, so good. Almost 6 hours in and nothing more than a mild headache - a lot like what happened when I started on the artemisinin. Right up the back of my neck and into the back of my skull. Two advil seems to have done the trick. Wonder if my bigger problem is babs since I've reacted most to art and to this anti-protozoal. Thanks again, everyone!
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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posted
I travel to CO to see a LLMD, who has long since administered a Groshong catheter to my heart and I rec'v (1) Zithromax, (2)Rocehphin (all by IV daily), and yep.....Flagly, 250 mg daily PO (by mouth).
I do fantastic and thrive until I start on the Flagyl, then I feel like crap warmed over.
Then, the memory loss; the physical agony and pain all over my entire body (literal physical pain and suffering), weakeness and lethargy.
If I didn't have the Flagyl, I'd be feeling like I'm on top of the world. I feel GREAT until I start the Flagyl....but I'm told by my wonderful support people here that if I DON'T take the Flagly, I'll only hurt myself in the end.
So, I wait....wait paitently for retuslts.
Do I believe them? Yep.
They've stood beside me through thick and thin....and I believe them now. We're goin the distance... Cats
Posts: 47 | From New Mexico | Registered: Jun 2006
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