Nine Weeks on Xithromax

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Nov 30, 2006.

  1. TeaBisqit

    TeaBisqit Member

    I thought I'd post about my experiences with Xithromax since alot of people were wondering at the study that was done with it.

    I've had CFIDS since 91, completely disabled by it. I'm mostly housebound now. My doctor and I had both read about the study that was done with 500mg's of Xithromax three days a week. The study claimed that about sixty percent of the patients who took it got about eighty percent better after six weeks. Well, it's been nine weeks now.

    Has it helped? Somewhat, but not the eighty percent I was hoping for. More like five to ten percent. I have alittle more stamina. It is the difference between my being able to make dinner or washing a dish. I've had the stamina to do a few things I couldn't do before. I was able to clean out my fridge. But I paid for it the next day in typical CFIDS fashion filled with severe pain and flare symptoms. I have more stamina to be on the pc longer and do the hobby work I do on here. I do notice that. I can even talk to one of my friends on chat, where before, I really couldn't do that. I didn't feel I had the stamina or energy. But all of these things are really only about five to ten percent better than I was before. I still haven't felt I could drive or do much of anything else.

    Some of my pain is better on the Xithromax. But only some of it. My fibro pain, that got better. It does nothing for my arthritis.

    For the first time in half a lifetime, I have color back in my face. I no longer look like I ate arsenic wafers or had my blood drained. I'm usually pale as a corpse. I have actual skin color. It's so odd to me now. I've been so pale that even the lightest shade of base makeup was too dark for me.

    I think my head is clearer for the first time in a long time. I don't feel foggy. However, it does nothing for the short term memory loss. That's just as bad as ever.

    Xithromax has horrible stomach side effects. You can get uncontrollable diarrhea on it at any time. The first three weeks on the antibiotic were so bad with it that I didn't want to stick out taking it. But by the fourth week, my stomach was a bit better with that. I still get upset stomachs on the days I take it, but it's better during the rest of the week.

    Fatigue and stamina are two different animals. I am still fatigued. But I have more stamina. So I can make dinner, but I'm very tired doing it. But that stamina/life energy is now there to do so.

    I don't know if I would recommend trying Xithromax as a treatment for CFIDS. I'd probably say no. I don't think the little bit of better is worth the stomach problems. Like what good is it if you are better, but you now can't leave the house because of the stomach problems? Plus, it's no miracle cure. It's not even a great treatment. And if I had known I would only have five to ten percent better, I don't know if I would have done it.

    I have no idea why it has helped alittle bit and not more. Maybe I've had it too long, I'm too old? I don't know. The ones it helped in the study were younger. I'm thirty-seven now. And I've had this for a very long time. There are other reasons it might have helped alittle bit. Maybe I had a latent Lyme infection or something else. Who knows. That might have been compounding the disease. But it's obviously not the cause of it. Whatever this illness is, I still got the November clogged ear, even while on this stuff. That's something you can set your watch by with me. I get sick every November since I got the illness. So, all I can say is, it's probably viral or micoplasmal and not bacterial.

    Clear-headed is not always such a good thing. I now get to really see what the illness has done to my life and there is nothing I can do about it. It's not for lack of trying. I am starting to feel like a cat chasing its tail. I can't beat the disease. I've tried everything. Nothing works.

    So there you have it. Xithromax is no miracle cure. And if you want to try it, it may or may not help you. I did have hope when I started it. The hope is now fading and I'm not sure I'll stay on it because it's not doing more. It's just sort of staying like this and the stomach problems aren't worth it.
  2. shar6710

    shar6710 New Member

    I so sorry this didn't work for you. At least you can be proud for sticking it out despite the side-effects. That had to take some courage and stamina too.

    I hope you won't give up. I know you've had this DD a long time but keep trying to find something that helps.

    Good luck,

    Shar

  3. dani78xo

    dani78xo New Member

    I hadn't heard about that study. I do know, though, that Zithromax is possibly THE WORST antibiotic you can take if you have even a slight case of GERD.

    I had to be on it one time for an infection, and it made me twice as sick as I already was.

    What was the study about, though? A theory in which CFS is caused by bacteria?
  4. Mikie

    Mikie Moderator

    Isn't the first drug of choice for treating CFIDS with chronic mycoplasma infections. It is Doxycycline with Zithromas second and Cipro as a third choice. Cipro is a heavy hitter drug and I cannot take it and don't think it should be used unless nothing else works. Some docs are now using Minocin.

    I don't know whether they told you to take probiotics with the Zithromax or not but no one should take ABX without the probiotics. The ABX kill the good flora, along with the bad, in the gut and that is why they are so hard on the stomach.

    Periodic diarrhea could well be Herxing, which is the body's way of purging the dead bacteria. The docs should also tell people about that.

    Whether a person achieves healing with ABX depends a lot on how long one has been infected. With cell-wall-deficient bacteria, like mycoplasmas, it takes at least six months on the ABX to heal. Some have to take it longer. Usually, after six months, one pulses the ABX, six weeks on and two weeks off. All in all, I was on the Doxycycline for 2 1/2 years, pulsing later on. My mycoplasma infection is under control but because, like with Lyme, mycoplasma infections can try to reactivate if one gets sick, stressed out, or injured. I always have Doxy on hand just in case. I will take it til I Herx.

    Sixty to seventy percent of us with these illnesses test pos. for these kinds of bacteria in studies. ABX treatment can be very helpful but it sounds as though this study may not be comprehensive enough. The protocol with the Doxycycline is 100 mgs. twice a day every day for the first six months. If there is too much of an immune response and/or Herxing, it can be slowed down by the doc.

    If you go to Dr. Garth Nicolson's website, Immed, you can read a lot more about this type of treatment. One usually feels worse before one feels better and the feeling worse part, including the diarrhea, can come and go in cycles.

    You can help your stomach problems by using a good probiotic. I buy the Jarro-Dophilus and it is sold here. Be sure to talk to the doc about it. He really should have told you when you started the protocol. Since it was a study, however, perhaps they didn't want you on anything else. Still, few docs tell their patients about the probiotics.

    Since the ABX did help you, you might be a candidate for further treatment. Good luck and thanks for posting about your experience.

    Love, Mikie
  5. deliarose

    deliarose New Member

    are immune modulators.. and I wonder if this is why you are feelign better.. even if only slightly.

    I have read countless times that our TH1 system is downregulated adn teh TH2 system is upregulated. ( i may be getting the terms slightly wrong)

    And anything that brings them slightly back into balance may help with the symptoms.

    Personally, I believe that a stealth virus is the source of my problems.. and I am thriving on a TRansfer Factor.

    I would never touch an antibiotic .. esp. if I didn't ahve any test results to show I had bacterial infections.

    In my situation, abx would only weaken the immune system more IMHO>

    delia

  6. Mikie

    Mikie Moderator

    Approx. seventy percent of people with our illnesses suffer from one to seven chronic infections. These can include the mycoplasma infections I mentioned above, but they can also include other bacterial infections, along with viral and/or fungal infections.

    If there are other types of infections present, the ABX, by itself, will not heal completely. All types of infections need to be addressed.

    In addition to my mycoplasma infection, I have some type of chronic viral infection(s), likely in the Herpes Family. I had to take Famvir for 1 1/2 years, pulsing toward the end, to get them under control.

    I switched to the Transfer Factors and still pulse them to try to keep my infections in a latent state. Most of these infections cannot be completely erradicated from our bodies. Keeping them latent is about the best we can hope for. As long as they stay latent and we stay healthy, they do not appear to cause symptoms. Still, they lie there like tiny land mines in the body.

    Love, Mikie