Is insomnia a side effect of ABX?

Discussion in 'Lyme Disease Archives' started by erica741, May 7, 2008.

  1. erica741

    erica741 New Member

    I started zithromax on Sunday, and have had trouble falling asleep every night since.

    I typically get heart palpitations, feel "wired", with resulting insomnia every time I've started a new medication (which is why I've stopped most I've tried).

    I've had these same symptoms since starting zithromax. I want to stick with it, but really hope my system calms down so I can start sleeping well again. I'm starting minocyline in a week, so fear I these symtoms will worsen once I start that.

    I can't consult with my LLMD because he does not return my calls. I've left several messages regarding lab slips and other questions about my treatment in the few days since I've seen him, and no one in his office returns my calls. The only reason I got my lab slip faxed to me last night is because I called his naturopath, and he called my doctor directly.

    I suppose the level of care is a separate issue, so I'd appreciate any feedback on the insomnia and other side effects I'm experiencing.

    Thanks!

    Erica
    [This Message was Edited on 05/07/2008]
  2. victoria

    victoria New Member

    If insomnia is the only side effect then you may want to tolerate it or try to counteract its effects with something else to help you sleep; so you might ask your naturopath at least. If you're getting all the other symptoms, you likely also want to ask your doctor.

    BUT -Re quality/level of care -- If he's not returning your calls... that is bad and no excuse for it. Maybe you could contact the naturopath again for now, or, make another app't at least if you can't find another doctor to work with right away?

    ... or just go ahead and locate another LLMD ASAP (which is what I'd likely do). A month's delay or so won't make too much difference overall as lyme's reproductive cycle is 28 days +/-.

    I know they're hard to find, but quality of care is so important with this!

    all the best,
    Victoria

  3. erica741

    erica741 New Member

    Since I got sick, I typically get heart palpitations and insomnia every time I start a new medication and even with some supplements. I usually ditch the new med or supplement when I get this reaction, but stuck through it with Valctye (symptoms passed in a few days) and will continue to take the zithromax and hope it passes as well.

    One of the ironies is that I get the heart palpiations even with sleep meds! If I take an Ambien, it will knock me out, but I'll wake up 5 hours later totally wired. Same with Lunesta and Ambien CR.

    LAML, I do think it's possible that heart palps are herx symtoms, because I had awful periods of heart palps, hand tremors, and feeling completely wired while I was on Valctye. Many others on this board taking Valctye have reported the same anxiety-like feelings. But with Valctye, these symptoms seem to come during our post-herx periods when we actually feel better overall.

    My unscientific, ummedical opinion is that, at least with Valctye, these heart palps and other anxiety-like symptoms are related to the immune system, as I often ran fevers at the beginning of these periods.

    Victora and Femmdange: Ironically, I'm seeing one of CA's lyme "experts" who is supposed to be one of the best and most responsive LLMDs around. I saw him last weekend at his satellite office where it very busy and chaotic, so I am giving him the benefit of the doubt that is why he forgot to give me my lab slip and why his staff has been to busy to return my calls so far this week. But it certainly doesn't instill me with more confidence when I don't get a response.

    Thanks again guys for your advice!

    Erica
    [This Message was Edited on 05/07/2008]
  4. jess

    jess New Member

    Hi Erica, I thought I was the only one who felt wired and got insomnia on antibiotics. The last time I had them was 6 years ago and they were IV to save my life after surgery. I always complain about these problems from any antibiotic. In order for me to stay on them I have to take Xanax. It's the only thing I found to allow me to keep on them. I usually take one every other day. Then I stop after i finish the antibiotics. The problem is if I am put on long term ones for possible Lyme. I hope you find something safer and better to help. I am wondering though if this is a herx. If so, then I guess I really have Lyme. Please post what you have found that helps and if this is really a herx.Thanks, Jess
  5. connieaag

    connieaag New Member

    Kathryn is having trouble sleeping on Ceftin, she starts Zithro next week!

    I think the 150mg of trazodone, 3mg of Lunesta along with the Melatonin have also run their course for her. She has been up for 3 days now! Naps for a few minutes during the day, but can't sleep at night at all.
  6. erica741

    erica741 New Member

    I don't think I'm herxing yet. But if I am, it is a walk in the park compared to my experiences on antivirals!

    PJ, that is interesting that you too had insomnia recently after starting zithromax. Did it go away? I really hope this only lasts a few days.

    Jess, Thanks for sharing your past experiences with antibiotics. Are you on antibiotics now? I couldn't quite understand that part of your post.

    I've been taking klonopin nightly for over a year, and had success falling asleep quickly last night by taking xanax instead (I guess it gives more of punch). But then I woke up wired 4 hours later.

    I think I'm going to have to bring out the "big guns" I had to use while I was on Valctye. I might just have to break out my Trazodone and maybe Ambien. I hate the next-day grogginess, but I always start panicking when I can't sleep because I know that I need sleep if I am ever going to recover.

    Thanks again for info and advice.

    Erica
  7. erica741

    erica741 New Member

    Wow, your daughter is taking A LOT of sleep meds. Do you think she may be taking too much, and that they are contributing to her insomnia? Sleep meds in general don't work for me and often make me "wired" after getting an initial few hours of sleep.

    I'm a big fan of the benzos, because they don't artificially induce sleep. They just relax my body to the point where I fall asleep naturally. I am able to get a deep, natural feeling sleep on them, and never get any side effects. Have you considered klonopin or another benzo for Kathryn? I know they are potentially addictive, but taking them for a week or so may give her body a break from her usual meds, so maybe they can start working for her again.

    Also, lunesta is pretty weak, so not surprised it's not working on severe insomnia. Has your daughter tried Ambien? That is the only drug that is pretty much guaranteed to knock me out for several hours.

    Restoril is another option. It is a benzo, but due to it's long half-life can be used longer-term without addiction.

    Connie, I know Kathryn is very young, so you and her doctor may be reluctant to put her on benzos or a hard-core sleep med. But being awake for basically 3 days straight is dangerous! At least she is napping though.

    Have you called her doctor? The doctor needs to take action ASAP if your daughter hasn't been able to sleep for several days.

    How long has Kathryn been taking Ceftin? You might want to hold off on starting her on the zitro if her sleep doesn't improve.

    I hope you find a resolution soon. Please keep me posted.

    Best,
    Erica

    [This Message was Edited on 05/08/2008]
  8. EricaCFIDS

    EricaCFIDS New Member

    I'm sorry you are having insomnia. It's one of those very difficult things. We all desperately need our sleep, and like you, I get sort of a panicky feeling when I start losing sleep. Hang in there and use what works to get your zzzzs!

    I'm sorry you haven't heard back yet from Dr. H. I was thinking about the very first time I called and left a message, I didn't hear anything after 3 days or so and called and left a message again. It wasn't until about 5 or so days total that I got my call back. He apologized when he finally did call (Anthony). I think he's a very busy doctor.

    Also, when I had my follow-up appt with him a week or so ago over the phone he had to call me back because he had an urgent call from a patient in Europe! He also called a half hour late (they warned me in advance, but I'm okay with that - he gives me his full attention when I talk to him).

    Don't give up on him! They'll call soon I'm sure.

    All the best,
    Erica
  9. connieaag

    connieaag New Member

    She has tried Ambien, Ambien CR in the past and they gave her nightmares. She has tried Xanax, Flexeril, Zanaflex, Rozerem, Sonata, Seroquel, Trazodone previously, and many homeopathic remedies per her NP until she was so full of pills and drops....

    She is low on Melatonin, so she has taken it in various doses. Dr. C has her in the smallest amount .5 mg as he says that less is better. He also had her go back on Trazodone. It is doing the same thing as it did a couple years ago in that it helps at first with 50mg, then she quickly goes through 100 and then 150 and then after a few days it does nothing. Dr. C says it takes 150mg for most patients to get sleep from it. The same thing happened on Seroquel. She has been on Lunesta for about 6 weeks and I think it has run it's course too. This is the typical pattern we go through,then the pain gets so severe because she can't sleep -- just a circle.

    Last night she just took the Melatonin and got 6 hours. I told her to try taking a second one when she wakes up at 2 or 3.

    We also stopped the Ceftin and are waiting a couple days before Zithro. We have also stopped the MS Contin as she was having lots of constipation issues, so we're back to Ultracet and Vicoprofen. She has a great pain mgmt doc who convinced us to pursue Lyme or some "strange viral infection" because he does not feel she has FM from what he sees in other patients. He doesn't doubt she could have it, just wants to keep searching. He too is at a loss in dealing with her pain. He didn't want to do MS Contin, but after our trip to Springfield and Dr. C suggesting it for chronic pain, he did prescribe it. It does help the pain, but makes her a constipated zombie -- boy, that sounds bad! :)

    NOT FUN! And the rain is not helping at all and looks like more to come all next week.
    [This Message was Edited on 05/09/2008]
  10. connieaag

    connieaag New Member

    I spoke to Dr. C's nurse yesterday. I filled Kat's scrip for Zithro, but wasn't sure how to take it since it said 1-2 a day. She said to start with 1 for several days and then see if you can take two. If not, one is fine, or maybe try 1-1/2 first.

    Thought this might help your herx! Kat started today as I don't think the Ceftin was causing sleep issues since she was just about at the end whenthey started again, and on her typical sleep med usefulness (or should I say uselessness) cycle! I was going to wait a couple days before Zithro, but she just wants to get going so she can feel better!

    Also, our insurance only withh pay for 8 Zithro at a time. Did you have any problems?
  11. erica741

    erica741 New Member

    Wow, you really have tried every sleep med for your daughter! I know it is very frustrating to keep trying different medications, and then they either don't work or give you side effects worse than not sleeping at all.

    It is great though that she was able to get 6 hours last night with just the melatonin! Maybe she was taking too many sleep meds. I also think certain sleep meds can work differently depending on what other meds you are taking at the time.

    I can relate to Kathryn's experience with Trazodone. I took it for less than 2 weeks straight a few months ago, and went from 50 to 150 mg during in that short time. The worst part was that everytime I had to up the doseage, I'd have to deal with the next-day grogginess all over again.

    I didn't realize that your daughter suffers from such pain, which must make it that much harder for her to sleep through the night. I can imagine the mixture of abx, pain meds, and sleep meds could really clog up the digestive system. I'm sure you've tried the fiber formulas and probiotics. When I get sluggish digestion on medications, I take Yerba Prima's "Daily Fiber Formula", and it ususally does the job within a few days. I get mine at Whole Foods.

    I know you said your daughter tried xanax without success, but you might want to try klonopin because it lasts longer so might enable her to sleep through the night, and I believe I have read on here that klonopin helps with pain.

    I hope the melatonin alone continues to work, and also hope the zithro goes well with minimal side effects. It does sound like a good idea to start with 1 pill a day, and then slowly work up to 2.
  12. connieaag

    connieaag New Member

    She has been on much higher doses of Melatonin, but Dr. C wanted her on a very low dose. I don't know why. She has been on 3mg and 6mg at different points of time.

    She actually took the new Extended Release Ultram again today (200mg) you cantake up to 300 in a 24 hour period, but you take it all at once. We are supplementing with regular Ultram in between. it seems to help.

    Yes, the pain is a huge issue with her sleep. She took an Epsom Salts/Peroxide bath today and got in the sauna. The cool, rainy weather we are having is a big part too. 50 degrees and damp is the worst for her, and that is forecast for the next week :(

    Thanks! Connie
  13. erica741

    erica741 New Member

    Perfect timing with sharing your Trazodone experiences. I took some last night, and "nightmare" describes how I've felt all day - completely drugged and out of it. I couldn't even focus on a sitcom this morning.
    I've had similar experiences with it before, but last night I was so frustrated with my insomnia that I took 50 mg. I took it at 10PM last night, and am still feeling the grogginess...uggh, this stuff is awful!

    [This Message was Edited on 05/09/2008]
  14. erica741

    erica741 New Member

    Thanks for the info. I've been taking prescriptions for sleep for so long that I haven't tried the drugstore stuff in awhile. Although I did start with the prescriptions because I had such terrible next-day grogginess on the otc stuff.

    Thankfully, I've never had any pain issues. I can only imagine how dealing with pain on top everything else would affect sleep.

    I have yet to herx (unless the pounding heart and anxiety was a herx). I'm starting minocyline in a few days, so that on top of the zithromax will hopefully give me some sort of reaction to indicate lyme or other bacterial die-off.

    I just hope I don't end up so super-wired that I have to shoot myself with a tranquilizer gun to get to sleep :)

    Sounds like your herxing has calmed down? Are you feeling better overall yet?

    Erica


    [This Message was Edited on 05/11/2008]
  15. munch1958

    munch1958 Member

    I don't herx much. As far as insomnia goes, some meds have made my insomnia much worse. Mostly, I get mild joint pain and some burning in my leg bones. some sweating, some restless nights, and some increase in fatigue.

    Eventually, if it's a good Abx, I get a huge improvement in symptoms. Then stay on that Abx until I don't improve any more or feel like symptoms are coming back.

    Take 1/2 the dose when starting out

    ** IF you can cut the tablet or dump out 1/2 the med inside capsules -- get some empty gelatin caps to dump in the rest of the med for another dose -- don't throw it away

    Pulse it until you can tolerate the med once a day.

    Then pulse it again until you can tolerate the med 2X a day (or whatever your doc says is the full dose!)

    When I started on Doxy 2 years ago -- I took 1 pill in the am. Then waited 2-3 days before taking another one. Then worked my way up to 1 a day with 1 day a week at 2 a day until I got to the full dose of 100 mg 4X per day.

    Doxy = decreased muscle pain only while on it and decreses stiff neck and neck pain;

    Mino = eliminated TMJ, GERD, asthma and costochondritis (chest pain) plus controls neck pain;

    Zith = restored brain function -- could read a book again! Doesn't do squat for neck pain;

    Malarone = eliminated Babs sweating, insomnia, muscle pain, fatigue, night sweats, shortness of breath. (I was on 4 pills a day of this for 4 months plus 2 Zith.)

    Ceftin: Hated it. Tastes gross. No effect on pain or Lyme-tard brain.

    Clindy + Quinine = no effect other than a mild rash on hands & feet;

    Biaxin + Plaquenil = no effect at all.

    Flagyl: I didn't herx on Flagyl so I thought I don't have Lyme. It's supposed to be "chemo" for Lymies and very brutal when it kills the cystic form of Lyme.

    This happened each time I tried to take it which was at least 6 times -- I got such a severe case of depression where I wanted to jump off the nearest bridge.

    Flagyl caused an emotional herx of sorts and triggered major depression. I am not depressed (my seratonin levels are abnormally high) but on this med I was suicidal. I was on 3 tablets a day or one with each meal.

    Be very careful with Flagyl. Start with 1/8 of a tablet. DO NOT take a whole one. Do not take it two days in a row until you know how it will affect you. Do not take it on Monday if you work all week. Try Fri or Sat or on your days off.

    Rifampin: Seems to be a weak Minocycline. Helps but does not fully control neck pain. This is my background Abx while attacking Babesia. It does cause orange pee and poop plus orange tears.

    My fav Abx would be minocycline but I can't take this while on heparin. They simply don't mix.

    I'm allergic to Penicillin so Bicillin shots are out.

    Erythromycin: Didn't do anything. Most LLMDs do not use this med for Lyme. I got it from a stupid GP. Wasted 6 weeks on this med.

    If I still have a coinfection hanging around after heparin I will try Levaquin for Bart along with Mino.

    My LLMD says he's treated thousands of Bart patients and has never had one single case of Quinalones hurting a patient.

    Since I'm doing heparin shots, B-12 shots and growth hormone shots, I'm way over the scared-of-shots-hurdle or a fear of handling needles. Really, I just aim for stretch marks and push the plunger.

    I also may give Claforan IM shots a whirl. It could be a better answer for me than IV Abx. I worry about sepsis causing an infection with a Picc line.

    Plus we have a year round indoor swimming pool and hot tub. A Picc line would mean I'd have to give up my water fun or herx spa. I've already given up way too much of my life to this crud.

    Some would read the above and think I'm an Abx Seeker. Yes, In-deedy!!! I am one because I feel 100% better when taking them.

    Some would say it's the placebo effect.

    Others would say it's because I'm reducing an active infections by killing off the infection.

    Others would say it's because I'm treating the inflammation caused by the chronic infection.

    Still others would say Abx have neurotransmitter effects.

    Others would say Abx reduce Nitrous Oxide.

    Whatever the effect, they make me feel better. That's what matters the most!
  16. amk33

    amk33 New Member

    I love the Fibrosleep from this website. It has helped me tremendously. It works much better for me than melatonin alone. It may be worth a try. I can't live without it.