Doxy info and experience?

Discussion in 'Fibromyalgia Main Forum' started by foggyfroggy, Mar 13, 2008.

  1. foggyfroggy

    foggyfroggy Guest

    Hello all, I posted this over on the Lyme board but thought I would copy and post it here as well as I'm having some weird symptoms and I'm trying to figure out why.

    Hello y'all,

    I'm wondering about peoples experiences with Doxy as I like to go into taking new meds with as much knowledge as possible.

    Anyone had a negative experience with it?

    What are or have been your dosages?

    I know not to take it with minerals or dairy, but anyone noticed anything else?


  2. Slayadragon

    Slayadragon New Member

    I took one 100 mg capsule last fall, and it almost killed me.

    My cognitive function disappeared, and I started having sort of hallucinations.

    My emotions went batty. At one point I started screaming at someone for no reason. I fell into a deep depression.

    I got extremely tired and was in bed for several days.

    My eyesight got all messed up. Right afterwards, I got a bunch of symptoms that some say are associated with lyme (flashing lights, shooting stars), followed by the acquisition of a big black floater. It has lightened since, but has yet to disappear.

    About a month later, I took a 15 mg capsule of minocin. (My doctor had it compounded down to the very low dose.) This made me pretty sick too.

    For the next couple of months, my health was substantially worse than it had been before.

    This changed only after I discovered that I had a poison mold ("black mold" or stachybotrys) in my house. I moved out, leaving all my possessions behind.

    My health almost immediately sprung up to being much better than it had in the long time.

    I don't know if it ever would have gotten better if I hadn't moved out of the house. The antibiotic really threw me for a loop.

    Since moving out of the house, I have tried minocin a couple of times. It didn't give me _nearly_ the negative response that it did before. Progress!

    I tried a 50-mg capsule of minocin (similar to doxy) a few days ago. I took a capsule of Cefalor (an antibiotic in the penicilling family) along with it.

    I've had some effect. I've been more tired and a little more cognitively sluggish. My muscles have been a little stiff. My emotions have been okay this time.

    It's my impression that the doxy/minocin "loosens up" the lyme/bacteria/mycoplasma that is hiding in the cells, but that the body needs to kill it. This is fine if your body is up to killing stuff!

    The penicillin family drugs actually kill bacteria/lyme/mycoplasma. They don't loosen it up, and thus are limited in terms of their ability to get rid of it (since these bugs hide).

    My belief is that using the two together may be better than using either alone. The doxy/minocin loosens it up, and then the penicillin-type kills it. I don't know if that's true for everyone, but it seems to be for me since I've done better when combining the two. (I've done a little trial-and-error over the past couple of months.)

    I have come to the conclusion that if people have a horrific response to antibiotics or antivirals, poison mold exposure should be considered. (I had an awful reaction to an antiviral too.) It's obviously not a certainty that it's a problem, but it could be worth a look.

    For what it's worth, the doxy was prescribed to work on chlamydia pneumoniae and some opportunistic gut bacteria, both found in lab tests. No mycoplasma were found.

    My doctor thinks that lyme tests are too inaccurate to bother with, and so the doxy also served as a sort of "test" to see what kind of response I got. My die-off symptoms were suggestive of lyme, and so I'm now fairly convinced I have it.
  3. foggyfroggy

    foggyfroggy Guest

    I should check the mold thing out a little more I know. I was N.A.E.T tested a few years ago and came up positive. I did a few treatments for various things including mold and felt somewhat better but it was expensive and so I took a break from it and just haven't gotten back.
    We do have mold in our house I know, and are planning on building a new house in the next couple of years if health and finances allow.

    I went off the doxy a couple of days ago and am going to start back today at 1/4 the dose. Wish me luck!

  4. kking0412

    kking0412 New Member

    Dr Brewer put me on it 2/29 so, 2?3? weeks....100mg bid. TAKE WITH FOOD! does not say so on my bottle but trust me. makes me queasy if I don't and sometimes if I do. my mom got me these really cute (yummy) Danish ginger cookies since that's what she keeps around for nausea and they really help. Mom does have a lyme friend that warned me there could be vomiting out of nowhere; not even close to taking the pills. (so far so good) Roger was on it a year; Brewer thinks the SSD will come thru so he gave me 5 mos so we would be wasting less time...
  5. Febricula

    Febricula New Member

    Dr. Enlander prescribed me 6 weeks of doxycycline "just in case." I asked him if there were any side effects and he said no.

    I haven't started it yet, because I have a lot I have to get done in the next few months, and I cannot afford to do ANYTHING to throw that off. I'd really welcome hearing how it's affected other folks.

  6. wld285

    wld285 New Member

    Just wondering, do you have Lyme? Dr. E also has me on doxy and told me I would probably have alot of herxing (nausea etc.). My biggest problem when I first started was extreme fatigue. I would get nausea once in awhile but it would pass. Maybe if you don't have Lyme there would be no herxing???

  7. Febricula

    Febricula New Member

    I don't know if I have Lyme! lol I don't think so, but who knows? I have not been aggressive in pursuing this because it seems like there is so much debate over what constitutes proper testing and treatment that I wasn't sure whether a Lyme diagnosis would ultimately help me, really. I'm already so overwhelmed with trying to research/deal with CFS that I don't have the energy right now to take on Lyme ... but I certainly may do so in the future.

    Anyway, I tested positive for Babesiosis about 18 months ago. Went on a 3-day Zpack, then tested negative a few months later. My latest tests showed that I had an "equivocal" result for Babesiosis. So Enlander prescribed the doxy, but I'm not sure if I want to take it. I'm wary of herxing, yeast infections, etc. (and annoyed he didn't warn about it). Lisa's experience sounds terrifying.

    Also, I was intrigued by this: "It's my impression that the doxy/minocin "loosens up" the lyme/bacteria/mycoplasma that is hiding in the cells, but that the body needs to kill it. This is fine if your body is up to killing stuff!"

    My immune system is in rough shape right now -- maybe I need to work on strengthening my body in general before pursuing Lyme?

    [This Message was Edited on 03/14/2008]
  8. foggyfroggy

    foggyfroggy Guest

    kking, what brand are the cookies? Is the Roger you were talking about your husband? Was that for Lyme? I read your profile and I wish I could have kitties, but my husband (Roger) is deathly allergic to kitties :-( But I have kids and dogs to keep me distracted.

    Linda, extreme fatigue is right!! I also have been 'fading out' which has been really scary because I don't know if it's weird neuro stuff or whether my heart is beating so ineffeciently that blood isn't getting to my brain very well.

    Febricula, I hear your worry about getting worse, I can't afford it either. Who can I guess, but I'm not that far 'up' so don't want to go back 'down'!!

  9. mollystwin

    mollystwin New Member

    I have taken 100mg 3 x a day for a total of 300 mg per day. I'm not on it right now, but took it for 5 months for lyme and it worked real well for me. Killed lots of those buggers without too terrble of a herx. I did herx, but not as bad as when I was on cipro. Course I took the cipro first for 3 months, so maybe I killed a lot off then.

    Good luck to you!
  10. Slayadragon

    Slayadragon New Member

    Dar, how much of a herx did you have when you were first on the cipro?

    I'm just wondering how sick people who end up being successful in treating lyme get at the beginning, and how long it goes on.

    I'm convinced that there was no way that I would have been successful at treating the lyme when the mold was still in my environment.

    Hopefully the die-off I get this time from the antibiotics will be more in the normal range!
  11. EricaCFIDS

    EricaCFIDS New Member

    I saw an LLMD who thinks I likely have it. He put me on Doxy for 3 weeks (100 mg 3x a day). He's having me retest after that and then probably continue with it. I've started out slow, plus slowly adding in Nystatin (500,000 units) adding 1 a day until I reach the prescribed dose of 2 - 3x a day and a powerful probiotic.

    So far, I'm just really tired and my cognitive function feels worse. I'm also a little dizzier. No nausea though, which I'm happy to report. A few headaches that get strong then go away. I'm not sleeping that great, but okay. It's all reasonable though. Of course, I'm not up to the full dose yet! ( : I thought I'd put in my two cents anyway. If I feel worse, then that's a good sign!

    I got great advice to take it slow with the new meds. I'd like to pass that on to anyone ready to try doxy or other ABX. It was good advice! There's no rush....

    All the best,
  12. mollystwin

    mollystwin New Member

    My die off from cipro was huge!! I didn't know that it was die off, figured it out when it was over. If I had known, I would have gone slower with the abx.

    I was taking the cipro for mycoplasma when I was still at ffc. The dr there didn't have a clue as to what was happening to me either!! I later went to my new doctor who gave me my lyme diagnosis and that is when we figured out I was herxing on the cipro. My mycoplasma infection was not even a current infection, so I'm not sure why the FFC dr put me on the cipro. And it was for 3 months!!

    The herx was really bad for about 3 weeks, then gradually got better over the next few weeks. I was off work for a total of 9 weeks during this. I was so weak that it was difficult to stand to take showers etc. I would have to decide some days weather to take a shower, or have food! It's probley not healthy to herx that bad but like I said, I didn't understand what was happening and either did the doc.
  13. wld285

    wld285 New Member

    I understand alot of what you are saying, the Lyme diagnosis came as a big surprise to me. I think it is something for you to pursue though. Another piece of the puzzle. I also do not think you should be afraid to try the doxy. My biggest issue when I first started was the extreme fatigue and irritabilty for a couple weeks. Although so far on different treatments I find myself not to be a big herxer. I shouldn't say that too much, maybe a treatment in the future will be a different story.

    I do know what you mean as far as everything you have on your plate now. My immune system was in bad shape and I have5 different viruses that I can think of at the moment, severe candida. Right now the concentration is on Lyme, and I do wonder about all the others. I don't think I have enough years left to go at all these one by one.

    Keep Plugging away and take it day by day, that's what I have to do right now.

    [This Message was Edited on 03/16/2008]
    [This Message was Edited on 03/16/2008]
    [This Message was Edited on 03/16/2008]
  14. EricaCFIDS

    EricaCFIDS New Member

    Hi foggyfroggy,

    I just thought I'd share that I have been feeling AMAZINGLY good for the past month or so! I've been gardening and exercising and sleeping through the night and deeply!!! I can't help but attribute this to the Doxy I took for almost a month. I felt worse at first but then after about 2 1/2 weeks I just felt a huge difference. I'm seriously looking into this lyme possibility after the change I have felt. If anyone herxes on it, then you should do the same!!

    Good luck! I thought you'd like to know.

    All the best,
  15. foggyfroggy

    foggyfroggy Guest

    Hi and thanks for the update! I am so glad you see an improvement! Did you test positive after you re-took the test? Are you seeing a LLMD?

    I have been feeling quite a bit better until this week :-( I guess I must be in a mild Herx again this week as I've been weak, queasy and CRANKY. I don't really seem to Herx much though, so maybe it's just a virus I'm fighting.
    I'm still waiting to hear results from my IGeneX, but my PCP says he will leave me on the Doxy for up to 3 months if I feel it's making a difference so we'll see . . . .

  16. cherylsue

    cherylsue Member

    I started on doxy 100mg twice daily. It made me a bit naseaous at first, but that went away. I had the best result taking 200mg twice daily. Fried brain cleared.

    When I backed down in anticipation of going to Florida (sun exposure) I relapsed. My LLMD told me to quit taking it and try plaquenil or malerone. I tried that unsuccessfully for 2 weeks. It wasn't until I resumed thd doxy at high doses that I cam out of my relapse.

    Doxycycline can be very helpful. It's the only abx I can tolerate.