Tenth Week on Xithro, It is starting to finally work

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Dec 5, 2006.

  1. TeaBisqit

    TeaBisqit Member

    Prior to taking the Xithromax, I was pretty much housebound for the last few years. I'd make it out occasionally with someone else driving me to the store or doctor and could barely make it down a store isle or anything. Always felt like I was going to collapse on the floor.

    It is now going into the tenth week on Xithromax and finally, tonight I really saw it. I felt it. I went with my mother to a huge department store and the foodstore. I was able to walk all around. I did start to feel sick while waiting for her to finish shopping in the foodstore. But when we got home, I was able to put away my own groceries. Then I rested alittle bit and was able to vacuum my place! Something I can never do. I do it like once every six months if I can. And low and behold, I'm still not dead! I'm crashing now from vacuuming. And no doubt I will pay for this day in spades tomorrow. Earlier this week, we had gone to Walmart and I had the same thing happen. I was able to walk all around. But the next day, I was deathly, deathly ill with CFIDS symptoms. But I never would have been able to even walk anywhere in Walmart prior to taking the Xithromax. It's finally starting to kick in. I am getting better on it. Even if it gives me half a life back, I'll be happy. I hope it lasts.

    I've been taking pepto for the horrible stomach problems it causes. It helped alot. That's the only reason I was able to go out. Without Pepto, the stomach problems are really bad on the Xithro.
  2. gypsy101

    gypsy101 New Member

    would you consider mino? I haven't been here in awhile, but I am happy to report to anyone who would possible believe it, I am "cured". I have been taking AP minocycline (pellitized) for two months. I was cured within the first two weeks. I am pain free. I considered the MP (marshall protocol) but this ap seemed simpler to begin with. It has worked like a dream. I am so afraid folks will be offended, but I am telling you the truth. I have read zithromax can work as well, but it does a number on your system. You have to work with it. There is a site I found that really helped me. It is called the road back.org. This was how I discovered mino for fibro. Thank God.
  3. TeaBisqit

    TeaBisqit Member

    I tried that once, but not for long and it didn't work on me. Maybe I wasn't on it long enough. I tried many, many antibiotics. I was even on Keflex for two months once. But none of them seemed to kill this thing. I am noticing a difference on the Xithro. It's no cure yet, but there is a definite improvement.
  4. shar6710

    shar6710 New Member

    I'm so glad you are starting to see results. Enjoy your new found energy but please be careful and don't over do.

    I too am well enough to do a little shopping now but I always use a scooter. If you are still crashing just walking around the store, you might want to try using them.

    Good luck and I hope you continue to improve.

    Shar
  5. elliespad

    elliespad Member

    I'm really happy you're both doing SO WELL! Gypsy101, Are you saying you are symptom free? Or just pain free? (Which is also a good thing). Did you have Fibro and CFIDS? Or just the Fibro?
    [This Message was Edited on 12/06/2006]
  6. Slayadragon

    Slayadragon New Member

    Wow, 10 weeks is a long time. I've been on Famvir (an antiviral) for four weeks and was starting to think I should get improvement by now. But you have inspired me to keep going (especially since this stuff is definitely doing something based on the herx I'm having).

    Anyway, your post has been a source of inspiration, and it will be easier to keep going. Thanks you for that.

    i'm really glad you're feeling better.
  7. TeaBisqit

    TeaBisqit Member

    What this seems to be doing is to make my fibro pain better, but my hip and back arthritis are just as bad as ever. I walk around like I'm a hundred because of the crippling pain. But I have more energy and stamina. I can walk about a store. I might start to feel sick after awhile doing it, but I can now do it. I could never have done so before. I was so sick that I used to feel like I would collapse in the foodstore isle on the floor or collapse on line for the register. It had gotten to the point where I rarely left the house and my mother was doing all the food shopping. I was a virtual prisoner in the house from the disease. The Xithro is giving me more stamina and energy than I have seen in a very long time. It is definitely helping me.

    The down side is, the stomach problems are from hell. I went to the store today and ended up in the store bathroom. It was not fun. And then tonight, again lots of bathroom trips and my stomach feels like it went through a blender. The days I don't take the Xithro, the stomach gets better. And then I can take Pepto and make it out to a store, if I don't eat alot and watch what I eat. There's always a price.

    The neuromediated hypotension/severe lightheadedness has not come on me for at least a week and that is why I'm better. I had it so severe, it was a major reason I couldn't leave the house. With that gone, I'm much better. And that's because of the Xithro.

    I wasn't even going to stick it out. The stomach problems are killing me off. But I felt, let me try it as long as I can, especially because I've had the illness for so many years. And then suddenly it really started to kick in. I was noticing some small improvements with more stamina to be on the pc. But this is even better. So it makes me wonder how I will be if I continue to take it. If I can with the horrible stomach problems.

    I am a completely typical long term CFIDS case. So if it's helping me, and it helped sixty percent of the people who did that Xithro study, I think this drug should really be looked into more. Perhaps all antibiotics should be. I had tried many of them over the years, but never for this long. Maybe if I had been given a long course like this years ago, I wouldn't have had no life for all these years. The doctors only ever gave me like one bottle for a week to ten days of anything. And I'd feel it was doing zero. I was even on a Rosefen shunt once, but only for a few treatments and I felt it did nothing. Like I was never treated long enough. I believe this is proof that CFIDS is caused by a contagious infectious agent in at least sixty percent of the cases as per the study. That means it can be treated, maybe even eventually cured. And if not cured, since it causes too much damage, just maybe we can get some our lives back even half way.
  8. Scapper

    Scapper New Member

    Happy to hear that you're finally getting some relief. I too am a long time sufferer of CFIDS. So, I can only imagine what a relief this is!

    I was wondering if you're taking a probiotic?

    This will help with your stomach pain, which sounds severe! The antibiotic not only kills the "bad" bacteria, but the "good" as well. The probiotic will replenish the good bacteria in your intestines.

    If you are not already doing so, please do a search here on probiotic to get some ideas.

    It's IMPERATIVE that you replace the good bacteria while on this antibiotic........so it does not wreck havoc on your system (as it is doing on your stomach!)

    Again, happy you're getting to "live" a little :)

    scapper
  9. gypsy101

    gypsy101 New Member

    I am taking the standard 100mg mwf of minocycline. The actual mino, not the generic brand. I had to pay out of pocket... $300. I hear the generic works as well, but I was not taking chances.
    I have been tested for everthing. More than once. No dxes until one doc told me I had fibro. I was tested for lymes several times. I have recently ordered a lyme test kit from igenix and will use that next week. I hear they're the best. But frankly, I think it's some bug causing all of our misery. There are so many diseases, lumped in with rheumatic diseases, that I believe they're actually all the same thing with varying symptoms. I believe if this is true, all of us would benefit (particularly EARLY ON) from taking a tetracycline whether it's doxy or mino or heck, I've really heard about the zith success, so go for it.

    One IMPORTANT note. PLEASE follow this advice... NO typical "cheating". If you want success, remove gluten, dairy and sugar. NO EXCEPTIONS. And take a probiotic. I do as well. Do you want health? TRY This very easy approach. As you can see, it's not possible for me to benefit from this advice. I gain nothing. I visit roadback.org and celiac.com to round out my need for information. I was on my knees and following this program lifted me back up. I prayed the entire time. This could be your answer as well. Have you asked God for help? Maybe this is it. Try it. God bless you.
  10. ANNXYZ

    ANNXYZ New Member

    most of us are sick due to intracellular bacteria like lyme , mycoplasma , chlamydia, babesia etc..

    These ABX you mention can begin killing the bacteria that hide in your white cells and usually do not show up on tests . Many people do improve on ABX .

    I wish everyone here would get an IGENEX Labs lyme test .
    More and more members here have been tested by Igenex ( a RELIABLE TEST ) and find they have LYME DISEASE .