My battle with Antivirals and antibiotics

Discussion in 'Fibromyalgia Main Forum' started by ETN, Feb 3, 2007.

  1. ETN

    ETN New Member

    I am going to try and make a quick summary!
    I have been battling with chlamydia pneumonaie for over 2 years. I was on a very aggressive antibiotic treatment for 1 full year and then went off of it for a year after my dad died because I just couldn't do it. It was as aggressive as treatment for TB
    I was on amoxil 500mg twice a day, zithromax 250mg M,W,F, Rifampin 300mg twice a day and then would do pulses of Flagyl.
    It was horrible...not fun at all.
    So here I am now where I was just tested for EBV,CMV and HHV and all of that. I was positive with high titers for EBV and CMV.
    So I am not on Valtrex 1000mg twice a day and Ursodiol 300mg 2tabs three times a day.
    I am on about week 10 for those 2 meds.
    I also am taking Zithromax 250mg M,W,F for the Cpn
    I was also taking INH, Isoniazid 300mg once a day. Then I am to add Rifampin and then pulse with flagyl.

    I have such a hard time taking the INH that I can't even take that. It literally bed riddens me and fatigues me so bad that I literally can't get out of bed. I even tried 1/4 tab once daily and still had a hard time.
    Obviously my body can't tolerate all of that right now.

    My dr wants me "functioning" to where I can at least get out of bed and all of that. So I have since stopped taking the INH and am just going to continue with the antivirals.

    Of course it's a "quicker" fix to treat the virals and faster. The clamydia pneumonaie is very hard to treat.
    It's a precursor to cancer, heart disease and a host of other things.

    Both my dr and pa are on the same protocol as I am.
    The protocol I was put on is the Vanderbilt Protocol.
    Here is a list of my meds then I will sign off.
    Effexor XR75mg 2 po q am and 1 po q pm
    Ms Contin 100mg 1po bid
    Norco 10/325mg prn for breakthrough pain
    Soma 350 mg 1 po qid
    Xanax 0.25mg 1 po tid and prn
    Zelnorm 6mg 1 po bid
    Levsin Sl 0.125mg prn
    Albuterol Inhaler prn
    B-12 injections 3ml's M,W,F
    Oxytocin Injections M,W,F
    Mirapex 0.125mg 1 po hs
    Vitamin C 1000mg 1 po hs
    Valtrex 1000mg 1 po bid
    Zithromax 250mg 1 po M,W,F
    Ursodiol 300mg 2 po tid
    Vitamin D-3 2400 IU daily
    Dhea 25mg 1 po bid
    5-Htp 1 po hs
    Singular 10mg 1 po hs
    Omega Fish Oil
    Msm

    then have to add
    INH 300mg 1 po q am
    Rifampin 300mg 1 po bid
    Flagy 250 mg work my way up to 1 po bid
    oh ya Etambutal also UGH

    I think that is it.
    I used to take nothing but for my asthma...
    I am working on 8 years seriously ill since the birth of my last child !

    [This Message was Edited on 02/04/2007]
  2. Slayadragon

    Slayadragon New Member

    My goodness, that's a lot of drugs.

    What is INH?

    Best, Lisa

  3. Bruin63

    Bruin63 Member

    I'm battling MRSA , and I have felt at times I wouldn't get throught it.

    I'm also on Bacntrin (sp?) 8oomg
    Rifampin 600mg,
    It was way to hard on my intestines, so we cut back on the Bacntrin to 400mg.

    I have a question for you, do you get Horrible headaches about a couple of hours after you take them?

    I had a bad spinal tap, once, and it feels like the same kind of headache to me.

    I also take the Norco and Soma, along with Vistril, and I use the Proveintil (Inhaler)

    That's about all my system can handle

    Hope your better, soon, some day, never sure how to say that,
    I know when someone says it to me,
    I say, "ME TOO" :eek:]
    I feel like it will never end, and its been 2 years, with off and on symptoms, then went full blown. ugh..

    Did you spend time in the hospital with IV treatments, if you don't mind my asking?

    So sorry your having to go through all of that, certainly is a hard way to live these days.
    Hoping your progress continues

    sharonk
  4. ETN

    ETN New Member

    INH is Isoniazid. It's an antibiotic which is usually used for TB.

    I was reading some of your posts.

    I saw my dr a few weeks ago and was telling him how maybe there is something else going on with me. He was like yes there very well could be.

    I have a feeling I have lyme. Where I grew up my mom picked ticks off of me all the time. He said that the tests for those are so iffy and sometimes are not correct at all.
    I just don't know why I am having such a hard time with the antibiotics. I have really hung in there but it gets so frustrating.
    The die off is what is a killer. I literally can feel the toxins come out of me. I know that is weird but I do. I feel it all the way to my bones.

    See you have been feeling so so.
    When are you going to start Valcyte. I think that is what my dr was talking about.
    We might stop the zithromax and put me on doxy and see if that helps any better.
  5. ETN

    ETN New Member

    I get headaches off and on but not so much as I used too.
    Oooh MRSA is a toughy. Hope you are doing better.

    No I have never been on IV meds or been in the hospital.
    I had many trips to the ER when all of this started but never have been admitted.

    When I was pregnant with my 3rd and last baby I ended up getting really really sick at 31 weeks and went into labor. Turned out I had a severe kidney infection and was put on complete bed rest. I had that infection the rest of my pregnancy and they couldn't get rid of it.
    I had Nate full term and he was 10lbs! LOL 1 push out. I was so proud. So was my dr! :)
    anyway after I had him I just kept saying that I don't feel well and that's where all of this last 8 years started.
    I have been sick all my life.
    It's kind of funny how I look back and see the "cycle" it too.
    I have had 2 sinus surgeries. This is all related. I had chronic yeast infections for years. All related.
    My asthma...I have had since I was little but I was told that if I were to get the chlamydia pnuemonaie under control my asthma might be gone.

    Hope you are feeling better.
    My dr is really getting the awareness out here where I live. One of the big hospitals here just hired him to lecture and fill all the dr's in on his txt plans.
    They are trying to teach the dr's that there is a science to this.
    Nice to meet you
    Meghan
  6. ETN

    ETN New Member

  7. Slayadragon

    Slayadragon New Member

    I'm going to go out on a limb and say that in my opinion, you are overwhelming your system with too many really strong drugs at once.

    The antibiotics are particularly bothersome to me. From what I'm hearing, it's been two years, you've not gotten rid of the cp, you had a yeast problem to begin with, and one of the drugs is so toxic that it's generally used only in extreme circumstances (e.g. for TB).

    I would take a wager that you are overloaded with yeast right now, and that that is part of the reason that your body feels so bad.

    Your endocrine system may be quite worn out as well.

    And taking any drugs at all (particularly germ-killing drugs) is exhausting for CFS sufferers. It's not unsurprising to me that your core strength was gone.

    I rarely (if ever) have criticized other people's approaches to treating this disease, since none of us quite have a clue about what to do about it and the whole thing is up for grabs. I tend to think other people here feel the same way, since your post has gotten so few responses.

    If you were just starting on this protocol, I would wish you well and watch your progress.

    But if I had been doing something this taxing for two years and not getting any progress (either in terms of feeling better or in accomplishing an underlying goal), I would shift gears.

    I understand your wanting to get rid of the cp, and that seems like a good subsidiary goal. In the long-run, it can cause various sorts of harm.

    On the other hand, many CFS patients live for decades without having any negative effects (and certainly not dying) from it. And after 2 years, you've not killed it yet. Plus, you should be aware people with CFS are very prone to cp, and that it often comes back even if you do succeed in killing it.

    Short-run, the things that you're doing to kill it appear to he hampering your ability to recover your strength. If you could get to the point where you were living a halfway-normal life (literally halfway--40-60%), you then could decide whether trading off some of that wellness in order to fight the cp would be worth it for you.

    It's possible to have CFS and feel better without taking drugs. You have to work at it, but no harder than you've been working to take those drugs.

    As far as I can tell, the antibiotics are being used just for the treatment of cp. If I were in your position, I would talk to my doctor or another doctor about the possibility of discontinuing them and trying to improve my core strength.

    Addressing yeast problems probably will be a key in getting some strength. I started a thread a while back called "Controlling Yeast," and people contributed a lot of other good ideas to it.

    The books listed in my bio section also may be helpful. Hopefully if you follow some of those strategies (especially the ones in the Teitelbaum and Golan books), you will start to feel better overall.

    After reading about people's experiences with Valcyte, I would be disinclined to start it until I had some basic strength. At the very least, I wouldn't be taking all those other drugs at the same time. I have not heard of any of the experts who have prescribed Valcyte (Dr. Montoya, Dr. Brewer, Dr. Levine, Dr. Peterson, Dr. Lerner) using other toxin-fighting drugs at the same time as it. Valcyte is hard enough on the system all by itself.

    This is just my opinion, of course. Undoubtedly there are others on the board who disagree.

    If you do decide to continue on the current path with your doctor, I would consider asking some hard questions of him/her. These would include: 1) Apart from killing the CP, what are our treatment goals? 2) How long can I expect it to be before I start to get stronger and feel better? 3) What is it about my treatment plan that's going to make me feel better?

    It may be that those answers will give you the reassurance you need to continue on your current path. If not, they may make you convinced that going down a different one is what's right.

    Again, this is just my response. I am not a health care provider and am not offering you medical advice.

    You should make your own decisions about what treatment course to follow, and you should talk to a doctor (a new one or your existing one) if you are considering withdrawing from any drugs.

    Best, Lisa

  8. fungirl2100

    fungirl2100 New Member

    I have had quite a few antibotics as well. I had bordella pertussis *whooping cough* 2 years ago. I have been on

    the z-pack(zithromax)
    levaquin
    prednisone
    cipro (antibotic for for Anthrax)
    all doses high & repeated

    6 mos of hydracodone cough syrup with guifusen

    it still wouldn't go away. I had that whooping cough for almost a year & still I worked part time. Guess I am toughier than I thought..

    It took extra steroid injections to rid me of that.

    I think that triggered my hibernating Fibro!!!

    So, if anybody wants to know anything about antibotics see me!! ha ha...

    thought i'd share my little story...

    love your friend,
    fun
  9. Jeanette62

    Jeanette62 New Member

    Hi Meaghan,

    You answered my post about SSDi and then I happened to read this. Believe it or not we are seeing the same doctor...Dr. Powell. Correct me if I'm wrong. I started reading and recognized the protocol you were on right away. Not too many doctors do it exactly the same way as Dr. Powell.

    A small group of patients from his office get together every 6 weeks. If you want to join us you're welcome to. We are getitng together Feb. 13 after out appointments. We meet for lunch at Fresh Choice. Many times we have run into Dr. P and Michael having lunch there too. You can call Annie or Kathy at the office and they can hook you up with our group if you are interested.

    Jeanette

  10. ETN

    ETN New Member

    hey jeanette I will call dr.p's office and find out the info. that would be nice. I just have to find out if I have something going on that day, ie appts.

    Lisa
    From what I am being told it takes at least 2 years with heavy duty antibiotics to kill the cp. I was on it for a year but not all the meds cause I couldn't take all of them. I then took a year off because of my dad's death and just recently started again.
    I appreciate all of your info in your post thanks!

    I had the yeast controlled, I was on diflucan and it still seems fine. I do take an acidophilus.

    I guess I am one of those that have a hard time on the protocol and am one of the very few that get better after doing the protocol.
    If you are interested in reading about it. It's a Vanderbilt Study done by Charles Sratton. I think that was his name.
    also a good website is www.heartattackgerm.com

    Thanks for all the replies.
    Meghan