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Mycoplasma/milion dollar question!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by ABCFS12, Mar 21, 2011.

  1. ABCFS12

    ABCFS12

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    HI
    OK this is really the million dollar question and if someone can help me out i just may have to reward you lol. I have a mycoplasma infection as my bloodwork reveals (along with a load of other fun stuff). I am dying to treat this infection but I am unable to tolerate even one antibiotic tablet. My stomach is ripped to shreds from just one pill! it can take weeks to recover. i have tried to be really creative. i had the antibiotic made into a suppository. well my body was not tricked in about one day my stomach was again a nightmare. my doctor has suggested IV antibiotics which i may try but i feel a little scared. not sure why. is there any other ways or ideas anyone has for me so i may begin to treat this infection? thanks.
     
  2. Boule de feu

    Boule de feu Senior Member

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    I got mycoplasma pneumonia when I was 23 years old. It got so bad that I had to be hospitalized. They called my parents to let them know that I was not going to make it (24 hours at the most). I remember that night, I thought I was going to die but I made it until the next morning... And the next one... I stayed there for 10 days.

    The antibiotics they gave me were so bad. It felt like my stomach was digesting itself and I had to eat... A LOT! - I remember eating 2 or 3 BIG MACS + 2 big fries + 2 turnovers + 2 milkshakes. That was ONE meal. I was only 98 pounds at the time.

    I remember being so sick for 3 months after that. It was like a full-blown episode of very severe ME - could not tolerate the light, I was sleeping 24 hours a day, too weak to move a finger. It was awful. Fortunately for me, I had good friends who were taking care of me - I was living in the complex of the hospital where the future nurses were living.

    Then, one day, I finally came out of it. I had to take more antibiotics, but it did cure me.

    From my experience and for what it is worth, I would say tough it up!
    I was also very sick from the antibiotics, but it did get rid of the infection.
    Just make sure you eat a lot the whole time you take them.
    Never take them on an empty stomach. You won't be able to, anyway.

    May I ask you which antibiotics you are about to take?

    I believe mine were erythromycin and tetracycline and another one I can't remember but that was 25 years ago.
     
  3. ABCFS12

    ABCFS12

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    wow. what a story. what your symptoms that led you to be hospitalized? why did they think you wouldnt make it? scary! i feel burning and constant numbness in my throat. very uncomfortable but my chest x ray was all clear. they were going to try doxycycline with me.
     
  4. Boule de feu

    Boule de feu Senior Member

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    They probably have a choice of antibiotics that are more helpful, these days. I've read somewhere that mycoplasma has become resistant to erythromycin. I would not be surprised.

    I did not think my story would interest you (LOL). I never tell anyone about it.
    I just figured out it my have been the trigger of my CFS, but I did not know at the time.
    Oh nooooo. I hope I did not scare you. My story is very unusual. There is almost no mortality related to mycoplasma pneumonia. I was very unlucky, that's all.

    I don't know how I got it and why it got so bad (the doctors were surprised - they told me that it was not an 'adult' disease but children and elderly are affected by it) but I can tell you that a week or so before, I had given blood to the Canadian Red Cross.
    I agree that it was a very nice gesture. They are not supposed to take blood if you weigh under 100 pounds. Maybe it made me weak? I found out later that I was anemic and I had some thyroid problems.

    I know I caught something very nasty after giving blood. Maybe it's not related at all?

    I am sorry to hear that you are so sick. If you don't mind, I would like to find out what you have decided to do and how you got rid of your nasty bug.

    I forgot to say that I was hospitalized because I was having severe respiratory distress. Each time I would take a breath, it was like I did not have enough oxygen. They put me on a respirator and had to hospitalize me for that reason.
    Can they see it on your x-ray?
    If I remember correctly, they told me I had a white triangular shape on one of my lungs.
     
  5. ABCFS12

    ABCFS12

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    hi
    my chest x ray was all clear. yes a little scary to hear your story but i thank you so much for sharing. i feel like i can get the oxegyn in it just burns a bit. not constant. was yours constant? i would like to pursue antibiotic treatment but i need to bypass my stomach somehow. thats why i neeed some help and suggestions. the option of taking it and eating is not even possible. when any antbiotic touches my digestive tract all food is not even digested before..well you know the rest sorry to be graphic. :)
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    maybe u need to start with some antifungal meds (nystatin, nizoral) and strong probiotics for a month or so, then try antibiotics like doxycyline but keep staying on nystatin and probiotics, also if u have a bacterial gut infection flagyl is another abx thatcould help. Maybe need to do a stool test first to see what bugs are going on in there too.
     
  7. Boule de feu

    Boule de feu Senior Member

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    May I ask you how long you've had the pneumonia and how old you are.

    I understand perfectly what you are saying. I also suffer from IBS and malabsorption/leaky gut syndrome.
    This in itself is a problem. Like heapsreal said, there is probably something that doctors can give you to bypass these problems.

    While I had pneumonia (mine was an acute case - sudden), I could not eat at all (boderline anorexia) but the antibiotics took care of that. Once on them, the nausea got so bad that I had no choice but eat to make me feel better. Without eating, I would start vomiting. (Believe me, vomit and burning throat don't go well together. Ouch!) I had to keep my stomach full at all times.

    My breathing had become so difficult that I had no choice but go to the ER to get oxygen. Before that, I had a very dry cough and I could not stop coughing each time I would take a breath. After a while, my throat and my lungs started burning. I guess my lungs got very inflamed (or i caught something else on top of the mycoplasma - maybe a staph? I can't remember) and as the days went by my breathing became to difficult to do it by myself.

    P.S. Remember that my story is one in a million. This is probably why I never mention it to anyone. It was a scary time but it was probably the beginning of my CFS (the trigger which made me sicker). Many of us have a horror story to tell as far as catching a viral infection goes. That is mine. :-(
     
  8. ABCFS12

    ABCFS12

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    Hi
    I've had this for a few months. Although its getting worse. I don't think I have much time to waste. However, being that I have so many issues going on the dr started me on valcyte for most pressing issue HHV 6. But this issue is getting worse with burning and breathing. So as of tonight I started some natural things until I can get on abx. I started olive leaf extract and coconut oil. Also some good probiotics and gut friendly supplements. Well see what happens next.
     
  9. Boule de feu

    Boule de feu Senior Member

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    I don't think we should ever postpone treating pneumonia, acute case or not.
    My doctor does congratulate me when I go see him right away. He is right because each time I waited, it did turn nasty - the last case of pneumonia I had was an allergic reaction to molds that got out of control. I'm not saying this to scare you even more... But, it's a fact: when bacteria have a chance to reproduce, they do! And, they do it exponentially.

    I understand that you might fear taking the abx, but if it does cure you... I'm sure you can discuss alternatives with your doctor and make sure he does what is right for you.

    I wish others could give you better advice than I do. I'm not too good at this.
    Best of luck to you. :). Keep us posted!
     
  10. Boule de feu

    Boule de feu Senior Member

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    I had a look to see if both drugs would interact together. They don't seem to.
    However, I found this which is interesting.
    If your abx make you hungry as much as mine did, this could be a problem (or maybe not?)
    Make sure you discuss it with your doctor.


    Interactions between your selected drugs and food:

    valganciclovir ↔ food
    Applies to: Valcyte (valganciclovir)
    ADJUST DOSING INTERVAL: Food increases the bioavailability of ganciclovir from the prodrug, valganciclovir. In 16 HIV-positive subjects, the administration of valganciclovir 875 mg once daily with a high-fat meal containing approximately 600 calories resulted in a 30% increase in the steady-state area under the plasma concentration-time curve (AUC) and a 14% increase in the peak plasma concentration (Cmax) of ganciclovir, with no delay in the time to reach peak plasma concentration (Tmax). The mechanism is unknown.
     
  11. Mya Symons

    Mya Symons Mya Symons

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    Misoprostol, Promethazine, Nexium, Align, and Sacchromyces Bouldari.

    Have you tried misoprostol? It is a medicine that coats your stomach with extra mucus so the medicines won't do as much damage. It sounds gross, but it works. Also, you could ask your doctor for something like promethazine for nausea and nexium or prilosec for acid reflux. I don't know the names of all the nausea medicine, but I believe there are six or seven to choose from, besides promethazine.

    After I had several courses of I.V. antibiotics, the gastroenterologist had me take Sacchromyces Bouldari and Align. Sacchromyces Bouldari is a yeast that stops the bad bacteria from over growing in your intestines and Align contains several probiotics to put back in your intestines after or during antibiotic treatment. I found that after I took these two, my stomach was not as sensitive as it used to be. You can buy Align at Walmart, but Sacchromyces Bouldari is much cheaper if you buy it online.

    When they gave me I.V. antibiotics I made sure to ask the doctor to give me nausea medicines along with the antibiotic. I can't tell you it worked with every antibiotic they gave me, but it did make things better then it would have been. Also, if your getting I.V. antibiotics pay attention to the name when they hang up the bag, so if it makes you sick you can ask them to try a different one. (learned that the hard way)
     
  12. ABCFS12

    ABCFS12

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    i started the doxycycline a week ago and so far knock on wood i have done very well. no stomach discomfort. i empty the capsule into a little apples sauce and make sure i have eaten something. besides that no ill effects. thanks for all the support and advice!
     
  13. Boule de feu

    Boule de feu Senior Member

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    I am glad it is working for you.
    I hope you will be able to get rid of it.
    How are you doing, otherwise? Does it seem to work?
     
  14. ABCFS12

    ABCFS12

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    actually interestingly enough no. the burning is still there. however, i do believe it takes time with something as persistent as this it may get worse before better
    thanks
     
  15. Francelle

    Francelle Senior Member

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    I haven't read all the posts in this thread but my recommendation would be - push to get a PICC line put in and have Azithromycin for as long as it takes - until you are free of it!

    You may not believe how much better you feel once it is GONE!

    Doxy did nothing for me in terms of eradicating the Mycoplasma! I had my Azithromycin orally longterm but, then at that stage, I didn't have the stomach issues that you have.
     
  16. Athene

    Athene ihateticks.me

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    Hiya!

    I have mycoplasma pneumonia and chlamydia pneumopnia as well (lucky me) Had a similar onset to Boule de Feu., was hospitalised and nearly died but pulled through against all logic! That was years ago and they put me on old fashioned antibiotics that made me vomit so much I skinned my esophagus and also developed clostridium difficile.
    The best way to guard against this is taking huge doses of probiotics daily between the antibiotics, frm the first day of treatment and all through it.

    Right, here's the bad news. I took doxycycline and azithromycin concurrently for 3 months and I still have mycoplasma. I started IV (it's good because you get a higher tissue saturation than you can get on tablets and is does save your intestine) but after 2 weeks of all those needles I had veins like Amy Winehouse and had to switch to tablets.
    Since this didn't work I am now on double the dose of doxycycline, plus rifadin and bactrim and plaquenyl (an antimalarial).

    I think mycoplasma isn't actually a bacterium but some kind of weird organism a bit like a virus, and it needs to be zapped by multiple attacks. Therefore I don't know what the ideal drug would be.

    Francelle - how long did you need treatment before you got rid of your mycoplasma? And did you just take Azith, or other stuff too?
     
  17. Francelle

    Francelle Senior Member

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    Mycoplasma are Mollicutes, Prokaryotic cells ie. which do not have cell walls so they fit more within a bacteria class but are very tiny.

    Athene, firstly a PICC line can stay in for weeks or months at a time so a great benefit is they do not stuff up veins willy nilly and are ideal for long term drug administration!

    I was on oral Azithromycin for four months but had previously been on: oral Doxy, Clarithromycin, Amoxycillin and I.V. Penicillin, Azithromycin (7 days), Doxy, Ceftriaxone and a couple of others I can't remember at present.
     
  18. ABCFS12

    ABCFS12

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    wow, interesting. may i ask which doctors are treating both of you for this. i dont think a picc line is for me as i am prone to infection etc. however, i wouldnt be opposed to iv antibiotic weekly. i have good veins! where would ui get this though?how did you know which ones to take? also how did you know that the infection was not gone? bloodwork? how long did you have to do the antibiotics before it was gone? this is all so frightening to me as i have so many other viruses to contend with! the doxy is drug of choice for dr garth nicholson who is mycoplasma pioneer. he feels that is the best one that crosses bbb. i cant tolerate the azithromyacin. he also doesnt recommend ivs for too long as oral is good for long term.
     
  19. Athene

    Athene ihateticks.me

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    Hiya!

    Thanks for the info Francelle. At least knowing it took you so long to get rid of this infection has given me hope that I'll get there if I give it enough time.

    ABCFS, I am not sure if weekly IV is enough. I was having IV every day. My Doc said he doesn't use PICC lines any more because he had too many problems in the past with patients getting infections, and also he thinks oral is adequate provided you use the right combo/dosage.

    ABCFS, since you have both Chlam Pneumonia and mycoplasma like me, I wonder if you should get a test for Lyme disease? According to my doc, these are very common secondary infections in Lyme disease. I gather it would otherwise be a pretty big coincidence to have both of them. If you are in Europe I can give you the details of his clinic, which is the best in Europe (and the only good one as far as I know!) You can send the blood by post.
     
  20. Lala

    Lala Senior Member

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    My mycoplasma titres went down to zero after 3,5 years of combination of antibiotics.

    Hello Athene,
    how is your lyme after all those atb?
     

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