Flagyl and Herxing

Discussion in 'Fibromyalgia Main Forum' started by dahopper, Jul 9, 2007.

  1. dahopper

    dahopper New Member

    Wow....I took my first round of Flagyl (really used it before but never could take it the way he wanted me to) But thought anyway I was doing so much better I could handle it now and take it as he directed me to 7 days on off 21 days 7 day on off 21 day until I did this for three rounds. Well I have been stuggling ever since I finished it two weeks ago. I am due to take another round of it starting next Monday. This has been tuff it reminded me I am still not a well person. Does anyone have any advice on Flagyl or experience with it ? Any suggestions would be greatly appreciated. Hugs, Debbie
  2. DEBG12

    DEBG12 New Member

    why does he have to take it like that? im curious because my doc put me on it and i have been taking it 2 times a day for 3 yrs. i thought that taking for this long is crazy so i have a couple of times went off it for a couple of months then i feel myself getting worse again so i start it back.
    just dont drink with it. its doubles the drink. 1 glass of wine is like 2 or 3. same with beer and so on.
    let me know why your taking it and why he has you on 7 days and 21 off. im curious
  3. dahopper

    dahopper New Member

    I had not had a glass of wine or anything to drink since Nov. 2006 because my husband had to stop drinking but I did have 2 glasses of wine on a Friday (I did not take it that day) and had stated the flagyl that Monday. I really did not feel like it made me feel any more intoxicated than normal but I have been sick every since. I cant think I cant hardly type this and make much sense of it.

    I will have to post back to you what he has me probably taking it for I will give you a list of what he has dx's me with. For the reason he has me taking it that way I can not answer that one but I will ask him.

    Thank You for your reply. I will try to keep you posted and get the list of my dx's. Please over look my typing ....spelling I am just so weak.
  4. GigglePoet

    GigglePoet New Member

    I have only taken flagil for treatment of vaginal bacterial infection and only a week at a time.. What does you doctor have you taking it for?

  5. CAAnnieB

    CAAnnieB New Member

    Hi Debbie,

    I took Flagyl in "pulses" (like you are)last year. It was very hard on my body! I don't have any suggestions, but wanted you to know that it can be a difficult treatment if your bacterial load is high.

    I had the following symptoms from taking Flagyl: Nausea, headaches, dizziness, increased pain, increased fatigue, migraines, decreased appetite, vommitting, & tingling in hands/arms/feet.

    I was taken off Flagyl because of the tingling...it was a sign of possible peripheral neuropathy. Not good! I was put on Tinidazole instead. I had terrible reactions to it as well!

    Hang in there & I'd suggest calling your Dr's office for advice if your symptoms are severe.

    I was instructed to take activated charcoal (2 hours before or after other supps/ meds) to help with endotoxin overload. (herxing) I took 16-20 capsules a day. It didn't seem to help me, but I've heard it has helped others.

  6. dahopper

    dahopper New Member

    Thank You all for your replys I am some better today but realized last night I was to start the Flagyl for another week yesterday....I missed yesterday and started this morning. I did talk to my doctors office yesterday and they said what I am feeling is normal and to go ahead and take it as directed. YUKE !!
    I am being treated for Chlamydia Pneumonia, EBV, HHV6,Lyme Disease....I know I am forgetting something.

    From what I can tell when they first tested me my EBV Igg was >5.00 that was Sept. 2006 they retested me again March 2007 and it was still the same.

    Holly Cow I feel terrible !!! I was doing so good until I started the Flagyl....what do you think this means ?
  7. CAAnnieB

    CAAnnieB New Member

    I too was being treated for Chlamydia Pneumoniae & have also tested positive for 2 out of 3 Epstein Barr lab tests.

    It is my understanding that the higher the bacterial load, the more severe reactions occur from treatment. I certainly had VERY strong reactions last year from all of the antibiotics & natural supplements given to me to kill the Cpn!

    After enduring severe symptoms for one year of treatment (with NO improvement); I finally decided to stop the treatments. I was exhausted physically & mentally.

    I believe that the longer a person has these DD's; the more difficult it is to treat...I've been ill for at least 14 years.

    Good luck, Debbie! I read your profile & it sounds like you have made major progress lately. If I had experienced such progress, I probably would have stayed the course & continued on the Cpn treatment.

    I hope this is just a temporary set back for you. If the Flagyl is too difficult for your body; there are alternative AB's such as the Tinidazole...

    Have you tried the activated charcoal? It's worth a try.

  8. norris2

    norris2 New Member

    I don't know if flagyl is effective for Chlamydia Pneumonia. I would not have thought so, but just don't know. On the other hand, those with lyme have wicked responses to flagyl. It kills the cysts and can be brutal. It is a brutal drug to begin with--very hard to detox, but it is believed to kill lyme cysts. You are likely being pulsed because it is a hard drug.

    The lyme doctors pulse it because the herx can be intolerable. You really should make your doctor be specific why you are taking a drug and why the dose and scheduling. Sounds like you could have lots of lyme cysts.
  9. dahopper

    dahopper New Member

    I bet then he is giving it to me for my Lyme....I tested very high with lyme and have been sick for years now. I know at one point and time he told me why I was taking each drug but my list is so long I tend to forget I have some brain fog still too....its even worse right now with taking the flagyl.

    Thank You for your reply....yes it is a brutal drug but I am going to try to make it through it. Do you think setting in my sauna every day would benfit me through this tuff time? I have just felt to bad to mess with it.
    Hugs, Debbie
  10. norris2

    norris2 New Member


    I've only tried a sauna a few times. If you are already stressing your body by killing lots of pathogens, I think the sauna may be too much. But I'm sure it is different with everyone. Personally, I could never do anything to get over a herx except rest and pulse the antibiotics.

    Your post about flagyl just reminded me of how I used to feel on it and all the people over on lymenet. So, it would seem like a possible reason for some of your problems. On the other hand, typically only doctors that specialize in lyme use flagyl for this purpose. Maybe you are seeing one of those. If not, and your doctor has you on flagyl for something else, then it may be hitting the lyme also. It's nasty.
  11. cherylsue

    cherylsue Member

    Sorry to hear you are having a rough time on the Flagyl. You were feeling so well and happy. However, the microbes that cause Lyme can be eradicated, so maybe your doctor is trying to get them all.

    I wouldn't try the sauna as I think that would make you feel worse.

    I am doing the cumanda/burbur thing and herxing big time myself with a lot of burning skins, fatigue, tingling, and malaise. I'm beginning to suspect I may have Lyme along with my viral issues.

    Did your CFS ever go into remission or were you steady state? How many years were you affected?

    Here's some hugs hoping you feel better.

  12. pam_d

    pam_d New Member

    ...due to SUCH a dry mouth??? I had to take Flagyl for something completely different (years ago, Kaiser Permanente docs were touting a protocol for chronic sinus infections that was a combo of antibiotics & Flagyl). Anyway, I got a dry mouth the likes of which I'd never had with any other med (and of course, many meds give you a cotton mouth). It felt like a knife was through my throat, and no amount of water, ice chips, lozenges, etc. helped. I had to stop after 48 hours, and it took another 48 for the effects to wear off!

    I just wondered if anyone else had experienced this effect with Flagyl? Maybe it was just me...

  13. dahopper

    dahopper New Member

    again for your help....I am on my 3rd day again on my second round of Flagyl what is so weird is Monday was my worse day ever in so many months and I didn't start the second round of flagyl until Tuesday....GO FIGURE !!!
    I am going to tell you something though that was different about Sunday and Monday...I did not take my burbur at all and when I called the clinic Monday the first thing they ask me was are you taking your burbur...well yes. White lie....I am sorry for that and jumped right back to it. It is the first time I really went two days without taking it at all. I believe why I slacked off of it is because for the first time in a long time I let myself slump into a mild depression and when I do that I let alot of things slide. I am not saying my depression has lessoned but I am forcing myself to be more productive again. I read somewhere that Flagyl can cause depression and now I do believe that.

    We are leaving today to go to Dallas today I get my shots at FFC and we are staying until Sunday because my grandbaby is turning two Sunday....she is such a cutie I will try to remember to post a pic of her in my bio.

    To all you wonderful people have a great weekend and hang in there we are fighters....I just know we are. The normals could never imagine how strong we really are.
    Love and hugs, Debbie
    HI CHERYLSUE !!!!!
  14. dahopper

    dahopper New Member

    somehow I missed your post....sorry. No Flagyl has never gave me dry mouth..are you sure it was not another medication? Maybe it just has different side affects for different people it just makes me feel like I've been hit by a mac truck and wish I'd just go ahead and die....LOL
    Just kidding.
    Hugs, Debbie
  15. dahopper

    dahopper New Member

    Did your CFS ever go into remission or were you steady state? How many years were you affected?

    Hummmmm......I would have to say I was always in a steady state until starting the Valcyte. Fatigue was overwhelming and I could never get over the run down flu like feeling. I just can not stress enough to you how my life changed with the last changes my doctor made in my protocol.
    Valcyte...burbur cumanda...Anti-Viral caps, I feel I am forgetting something.

    How many years was I affected???? Well next month I will have been with my husband eleven years and one year after we got together (lucky me) I strated not sleeping...itching and crawling at night when I would lie down, fatigue set in and I started having FM pain. I could not figure what was happening to me and that is when the search begain...I started looking things up on the internet then I flew to California to see Dr. St Amand and he told me I had FM but I was never told until FFC I had CF but that was one of my worse symtoms. Then I found out I had Lyme and very high tilters for EBV and other things.

    Well take care and I hope you are doing better. Hugs, Love
  16. norris2

    norris2 New Member

    Yes, on top of the herx, flagyl made me depressed. This is a side effect.
  17. cherylsue

    cherylsue Member

    Oh, I sure hope you are doing better today. Burbur drops do help. I was taking them all day yesterday because I was herxing so bad. They do offer relief, even if it's temporary.

    Do you know how you contacted Lyme? Is that why your husband is being treated, too? My husband has different symptoms from me, more gastro and peripheral neuropathy, headaches, but I'm beginning to think he might be infected as well. He's on cipro right now, but when he finishes I'd like to put him on samento and burbur.

    I've read that Lyme can be the basic cause of 80% of CFS. The latent viruses reactivate like EBV, CMV, etc. When you eradicate the microbes that cause Lyme, the other viruses will go into remission. I wonder if Valcyte is a broad spectrum antimicrobial and kills Lyme bacteria, as well?

    Did you herx on the cumanda? I know you were on ABX first, so maybe most of your herxing was done then. I was up to 2 drops each dose by the end of the first week, but I reacted so strongly, I missed my dose last night and just took 1 drop this morning.

    What do you do while herxing? I wish I could sleep, but it's just this agitated exhaustion. I'll rest for a bit, putter, and go back down again. Then I'll go on the computer and research...

    I read that Flagyl is used against the bacterial cysts that develop in Lyme. I guess your doctor wants to make sure it is eradicated and doesn't come back. By your herxing, there seems to be a little bit left.

    My naturopath told me after that I worked myself up to 15 drops of Cumanda for a few months to switch to Nutramedix Banderol, another strong antimicrobial to confuse the viruses and bacteria that mutate. Maybe this is what your doctor is trying to do. Confuse and kill those buggers.

    Wishing you well soon.

  18. mollystwin

    mollystwin New Member

    I haven't been on flagyl yet but will soon. My sister Molly has taken it and it was brutal. She would always warn me when her flagly week was coming and she didn't plan much for that week.

    Flagyl is prescribed for us lymies to kill the cysts form of the lyme. I was under the impression that the cyst form is cyclical and that is why it is given on the fourth week. Those cysts are hard to kill and that's probly why the big herx. The herxes get easier as you go forward and the load gets less.

    Good luck in Dallas.

  19. GigglePoet

    GigglePoet New Member

    What is Burbur and what is Cumanda? can you explain?

    Thanks GigglePoet
  20. mollystwin

    mollystwin New Member

    Cumanda is an herbal used to treat lyme disease. Burbur is an herb given to help relieve the die off or Herxheimer reaction when treating lyme disease.

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