I was on Flagyl since Monday. This is my 2nd week on Flagyl. I only do it one week a month. My first round last month was pretty rocky but NOTHING like this last week!

Well actually, I did't even make it a week. I called my doc last night ( started on Monday)and she said to stop the flagyl. I also asked if I could take one day off all my abx and she ok'd that. Tomorow I go back to all but the flagyl.

I have been right back to the pre-dx stage pain, emotional extremes, can't get outta bed, crash afer 1 hour out of the house.

Ok so here is the question ( i guess I just had to figure it out)........... Has this last year of tx really meant anything? If I can feel this bad again have I even made a dent in the keets?

I have been on abx for 13 months. I have treated for bart (2 months of Levaquin)and babs ( 6 rounds of mepron and artemisinin).

I am pretty damn close to giving up......
I just don't understand how this could be happeneing again. I know flagyl open cysts but I am on ketek and mino to kill the keet form.

Are we just on an endless cycle of killing keets and opening cysts?

I hate to sound so hopeles but it is how I feel............

I don't know what to say, except I am sorry that you feel so bad. I know what herxing feels like and I haven't even gotten to all the ABX that you guys talk about.

All I know is that if I do have Lyme, I have come a very long way with adding the hpearin to the ABX. Have you tried that? Even at that though, it still took no less then 3 years, but I have been on ABX very little. I just read a report on another board that says heparin binds with Borrelia and disables the sphirochetes. It is actually a rather old report, at least a few years.

Also, I have a consult scheduled with another LLMD to get a second perspective.

Also, I am looking into Ondamed www.ondamed.net.

Do everything possible to improve immune function.

I am talking about flagyl/tinidazole here.

My mom has undergone Lyme treatment for about 4 years. Aggressive IV forms, oral forms and she still tests highly positive for lyme and all co0infections. She actually has 10 +++ bands thru Igenex on the Western Blot.

She is highly positive for Bartonella, has both forms of erlichiosis and babesia.

This is after four years of aggressive treatment.................don't give up.but you just have to try other methods because antibiotics are not the answer.

It hasn't been all for nothing, and you know that. I know the first reaction when you herx big-time is to think - OMG, I'm relapsing. It's not - it's a herx, and the Flagyl must be stirring stuff up that's been in hiding.

I took it every day for 9 months straight, and it took months to get over the brain buzz I got within a half hour of taking it.

But maybe ramping up might be the way to go - because herxing that bad is no good for anyone. Give you body the break it's crying out for, otherwise your emotions are going to get the best of you.

Maybe pulsing it for two days on the weekend is another way to go, so you don't crash so hard after 3 weeks off.

So, um, what was the question again??

Hi from Joisey!!

I really understand how you are feeling...this is so frustrating and depressing...

Please know you are not alone and that your feelings are normal when herxing so much and doing so many abx, especially flagyl. The old timers here talk about brutal herxes on that stuff...I am not looking forward to when I go on it.

They are right....no need to kill yourself while killing the keets and busting cysts....but it feels like you want it to just end now!

Back off and ramp up if you need to. I know it seems like purgatory and you just want to kill them all as soon as possible but then you can get so run down from herxing that it is actually not as productive.

I'm with janet....order skyking's book.

Don't give up!

I don't want to sound like Susie Sunshine here, because it's important not to gloss this stuff over. Nonetheless, I can think of 3 possibilities, and none of them indicate a hopeless situation.

First is that you've become sensitized to Flagyl and are having a reaction to it alone.

Second is that you managed to catch the keets when they were reproducing and therefore especially vulnerable to abx, and that you got a double whammy from major dieoff and cyst busting.

Third is that you hit a confluence of body rhythms, general toxicity, spirochetal dieoff, and cyst busting, and are experiencing a concentrated dose of herxing and toxin-elimination problems.

And I wonder about one other thing: since Flagyl is a powerful antiparasitical, I wonder if parasite die off is part of the picture here? It's also used against the clostridium family (as in clostridium difficile, big stomach problem causer) so there may be die off there, too?

I've never seen circadian rhythms discussed in terms of long-term abx, but there's plenty of research demonstrating how important these rhythms are in all kinds of treatment, from anaesthetic to abx. Most of the research that I've read has been looking at daily rhythms (eg., timing for chemotherapy doses) but there are more extended ones -- days, weeks, months -- as well.

Flagyl and tinidizole seem to kick of a downturn for a lot of people. Tinidizole certainly did for me, although I'm coming up for air again. The depression, fatigue, and pain these drugs cause has been pretty frightening for me. What does Flagyl have to do with depression, you ask? So kind of you to bring up something to which I have a (semi) answer:

" Several other compounds inhibit ADH including nadide, a narcotic antagonist, nitrefazole, a nitrate, and metronidazole (Flagyl), a potent antiparasitic drug used against trichomonas. ...Since ADH is responsible for the degradation of serotonin, reduced levels of serotonin probably contribute to depression. "

And it's not just depression that serotonin regulates -- it's also implicated in pain management, migraines, OCD, anxiety, and the like, insomnia....

So, what was the question again? Oh yeah....Well, I agree with Aunty. Some of us might not get an actual cure; but I think this disease can, at least, be managed in most cases. Unfortunately, that seems to involve a lot of detective work to re-regulate and detoxify various body systems. Voodoo may be called for....

There is quite a bit about metronidazole and neurotoxicity in the veterinary journals:

Metronidazole and Neurologic Sequelae

I was in a constant state of herxing. One day it just knocked me upside the head. This is not working for me. There's got to be another way!

I opened my heart and my mind to alternative means of healing. That was 2 yrs ago this month.

Robi, I can't begin to express how much better I am. I'm not saying cured yet. But I'm in remission and getting my life back slowly. Alternative is no picnic either, but there were so many days of hope and good days in there that you know you're on the right track.

Don't give up. It's war and you can win.

Jelly...how do I find out if I have hypercoagulation. What lab did you use??

Janet.... I have stuck with the first LLMD I went to. I have had two other LLMD opinions during tht time. Both say I am getting excellent treatment. As far as the Ondamed......It would have to be free. I have no income. My partner is supporting me and we can't afford that. Wish I could. I have the rife book......wish i could get a machine.

Lou .... can yu give me specific ideas on ramping up? like how much at a time? I was taking 500 mg 3 x day for one week a month.

AB........I am on ABX and other treatments. I was doing nutritional IV until I could not take the needle in my arm once a week ...just to painful. I do acupncture once a week and I get reiki work. I tried massage but have a horrible herx everytime I do it.

Julie........Thanks but, It does feel like it is all for nothing.......If I pulse flagyl will the keets become resistant?

Pip.....I think rampng up is a good idea. not one my LLMD offered ...guess I need to call her again. Thanks for the help. I am trying to hang in but somehow I am only slipping..............

Lymetoo....I know you have been around here for a long time. I really don't know your history. Wondering if you could email me your experience.....that is if you already have it written up somewhere.....

Groovy.........You are an inspiration....I have only had this since Nov 2003......I do not think I can make 20 years of this.....That is what i feel l like....like its gonna be like this forever.....that I cannot have. I hope you bicycle in Holland.

Mino...what can I say?...........Your research is really good. "Frightening" is a good word. I don't think I have ever been this low........

map.....yes I belive in alternative medicine. Before lyme I rearely went to an allopathic doctor and took care of myself through diet, exercise, massage and other natural therapies. If natural living and remedies can get one well I would have never gotten sick. I just kept getting worse and worse. I had to go on ABX. Even my naturopath advised me to do this. I do currently receive reiki, acupuncture and usually get nutritional IV (It has just been too painful lately). I alos eat organic food and nothing processed. I am gluten free and very low sugar. The only sugar I get is from fruit. I drink no soda except for plain seltzer. I take epsom salt baths. I have had a few colonics. I even use the parasite zapper. Lots of supplements about 50 - 60 pills a day depending on what I can choke down.

So to sum it all up........I really feel like I am trying. What do you do when you feel like you are doing so much you don't have a life anyway? and the 3 free minutes a day you do have you feel like you'd rather be dead? then what? and I would rather be dead than on antidepressants....so don't suggest that.

I am not tryng to be mean so please forgive me if this souns bad...............I just really need to know what to do.

robi

Boy do I feel for and with you. My experience is sometimes we just have to let ourselves feel like sh** and acknowledge it. Someone called it in a similar post to me yesterday, Dark Night of the Soul. Sometimes we just have to let ourselves fall into it. There is no other way around it IMO, at times. If we try to avoid it, it is like we/I am getting chased.

I love the metaphor of the whirlpool. If you struggle against it it will wear you down until you drown. If you let go into it it will suck you in and spit you out on the side.

It may seem silly, but I have found many Spiritual ways to understand my body seeming to betray me over the last 18 years with an MS dx (mis, I hope) and now lyme and without antidepressants. I read JoanBorysenko< PhD - Fire in the Soul, a book about the psychology of Spiritual optimism and Victor Frankl - Man's \Search for Meaning. In th latter, his whole family was killed in a conncentration camp and he became a psychiatrist and found that the people who went through this horrendous experience and led productibve lives, were the ones who attributed a "higher" meaning to the experience.

The other information you have been given is invaluable. I am in constant need of the wisdom from these fellow travelers. For me, tho, sometimes I just need to say it is all cra* and I cannot take one more minute if it, and then, often, something larger than myself steps in, if I get out of my way.

Hope this is helpful to you. I know you bare honesty is helpful to me. Illene

But I do know that I wasn't on these killer doses that most are. I took 375mg, once a day, for 9 months. And it did it's thing. And for me, it was a lifesaver.

It's not surprising your emotions are all over the board - flagyl really crosses the BBB - if I recall, I started dreaming again for the first time in years when I started it. I relived my life in reverse in my dreams, and still do.

Toward the end of my abx therapy, it was cut back to weekends only, then one day a week, and it was the last abx I was on before I got off completely.

When I couldn't deal with it it because of herxing, I skipped all meds for 2 days. And I've been sucessfully off for almost 6 months now.

I'll leave it to the other science rats to dig up the details. I can only tell you what I've been through in the hopes that it will help.

Hang in there!!

(((((((((((((hugs)))))))))))

I am so sorry you feel so bad and are feeling hopeless.

I was there 2-3 weeks ago, and you wrote so kindly to me.

I backed off the abx. Taking a break at the moment, and feeling much, much better. Check with your doctor, of course, but Lyme made me extremely sensitive to medications, and a little goes a very long way with me.

I can't even tolerate the small doses I used to be able to. (Not sure why).

Now when I take my old levels of doses, I am in a place that you describe.

I will talk more w. my LLMD soon; but maybe your body is extra sensitive to these meds and your treatment must be very gentle.

When I first started cyst busting med, it was flagyl. Got peripheral neuropathy, so switched to tinidazole and it did not cause this problem.

Started with a very small dose. Opened up the gel cap and only took part of it. This was because a full pill gave me a killer headache. Gradually got up to the full dose, but used my own reactions to tell how fast to do this. Now, a full dose doesn't faze me, even when I pulse it only occasionally.

Now this could mean that the stuff isn't working anymore, or the antibiotics I am on don't create cysts to the same extent (penicillins and cephalosporins more likely to create cysts according to one article I read). There are other possible explanations. Whether pulsing or ramping up creates resistance, I don't know. Sometimes meds that become less effective can be increased in dosage and work again. So, in a way, this is ramping.

robi

I think you know what to do. Just tough it out. I have read other posts where you didn't feel like you were making any progress. Then a few days later you did feel better and treatment seemed to be worthwhile.

You know by now that that'e just the way this disease is. Up and down, day to day. Many others have succeeded in the long run even though they felt just like you do! The key thing is to never give up!

It does seem to me like you are on too many meds though. From the research that I have done on lymenet, most of the people that got well were only on 2 meds at the same time. IMO 3 to 4 meds at the same time is too much. Nobody really knows what kind of interactions can happen between them, not to mention the increased load on your liver/kidneys, and other organs to detox. Just take it step by step. Don't try to get all the coinfections at the same time, even if it feels like you are loosing progress.

[This message has been edited by robi (edited 07 May 2005).][/B][/QUOTE]

As they build over time... i wonder if they ever come to an end. Feeling like **** every few weeks is not good enough for me. There is no predictability and no way to work...... this is not life. I am just not the philosophical "there must be a reason" type. "Never" seems like to long ..... I don't want it. I would rather rest....be dead(without the euphemism.)

Thnaks for taking the time to respond but I am past just being tough (maybe it's a guy thing)......i've had it.

I am on 2 ABX most of the time mino and ketek) I take plaquenil to make the ketek work better. Than I was just taking the flagyl 1 x a month. So I was only on 3 abx 1 of evry 4 weeks. I finished treating coinfections. No mepron for over a month and the levaquin was a long time ago.

Anyway.......

My husband asked me if I will be feeling up to going out for Mother's Day since today isn't a great day, and my answer was there's no way to know.

I think the best we can do is try to enjoy the good days and get done what we need to on those days. We do know from experience that the bad days can be followed by better ones.

I know there really is no answer

sorry

I am pretty sure won't jump today......

the good ol' days......

apparently I am not happy when I don't herx and I am not happy when I do...

robi
Frequent Contributor
Posts: 791
From: richmond, va
Registered: Apr 2004
posted 21 April 2004 12:54
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I recently had my first visit with Dr. B in Virginia. I started on 200mg of doxy twice a day. I am on my third day of doxy and no herx reaction. Does this mean I probably don't have lyme? I thought I was supposed to herx within 48 hours. If I don't have lyme I don't know what the heck I have. Please let me know of your herx experience when starting on abx. Do most people herx?
Thanks for the input,
robi

I don't know how to help you get through this...but my heart is with you, and I'm sending you healthy wishes...you will get better.

As an aside, some recipes that you have posted are priceless. Your help toward others...also priceless.

I will always have Lyme...you may, also, but there are better days ahead. I just know it.

My best,

lifeline

So you're just stuck here for a while longer.

Thanks YOU for the laughs. Feel better.

Signed,
The Joisey Amazon

Not sure if I will ever go back to flagyl..... hope to try tinidazole ....but not right now.

All the posts really helped see me hrough.

Much gratitude ta all youse guys,