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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
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Antibiotics

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Daffodil, Nov 3, 2013.

  1. Tito

    Tito Senior Member

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    Last month.
    My personal experience with KDM is that he wants to do something for his patients, and he suggests things even though he knows they have little chance to work. I think it is because he does not want his patients to despair. Some doctors believe that if a patient is busy with a protocol, then he has hope and this is a positive thing. Many patients cannot stand the idea there is no treatment, they just want to try whatever the cost. Some people amalgamate the idea of "no treatment" with the concept of "no disease", which is of course incorrect. For the moment, the mood is very much "chronic Lyme"; 15 years ago it was mycoplasms. Two years ago, there was reports of massive improvement with Rituximab. Well, now it appears that people getting really better are the exceptions rather than the norm. In fact, it seems many patients actually got worse. Antibiotics seem to follow the same pattern.

    That might be an indication that a break is necessary. Discuss the issue with your doctor.
    vli likes this.
  2. Daffodil

    Daffodil Senior Member

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    Tito...it is true that trying various protocols did save my life; it prevented me from committing suicide and gave me temporary hope...but I really did not get the impression from KDM that that is what he was doing. In face, GcMAF has helped me. I just don't understand this. I really got the feeling that KDM understood the disease, though perhaps not fully yet.

    Maybe you are right..maybe this is all for nothing. Maybe the antibiotics are helping because they act as anti-inflammatories. I am also on anti-inflammatories, too. Maybe this is all artificial improvement and I will become bedridden again, once I stop the drugs.

    Anyway, if I take a break I will just end up dead anyway...so I may as well continue; either I will die this way or another way..what's the difference?
  3. maryb

    maryb iherb code TAK122

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    @Daffodil
    Is it not possible for you just to go to the ER and get it checked? If the pains are not coming from your heart then that at least will re-assure you.
    KdM's secretary will be in tomorrow am - make sure you get an e-mail to her so she can forward it on ASAP.
  4. Daffodil

    Daffodil Senior Member

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    Hi Mary. KDM knows about the chest pain and told me to get a stress test. I am seeing a cardiologist on Tuesday and hopefully can get the test soon.

    Thanks:)
    merylg likes this.
  5. maryb

    maryb iherb code TAK122

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    As you know KdM wasn't able to help me - whether if I was able to go back??? but I'm not well enough and have no-one to take me now. I do think he wants to help but like all doctors he follows roughly a protocol, definitely based on test results - unfortunately for patients like me with severe MCS and food intolerances I have struggled and suffered with everything prescribed, and we never really got to the root of anything.
  6. maryb

    maryb iherb code TAK122

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    @Daffodil
    that's good to hear.... its hard having a doctor far far far away!!!
    would you still not consider going to the ER?
  7. Daffodil

    Daffodil Senior Member

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    hi Mary. the thing is, I went to ER with chest pain before...I ended up there for 12 hrs and they found nothing. The pain was excrutiating but when the CT was normal, I was sent home. It is such an ordeal to go there, that I just don't see the point. No one even know what CFS is....it's all such a mess.
    Kapualahi, merylg and vli like this.
  8. maryb

    maryb iherb code TAK122

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    @Daffodil
    ah but what you need to do is not mention CFS or ME - its their choice not to want to understand it so it my (and many others I think) choice now not to bother telling them. Just describe the symptoms and elaborate/exaggerate if necessary to get the tests done.
  9. brenda

    brenda Senior Member

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    Daffs don't give up, there are other ways to treat Lyme. Have you considered rifing? I don't think my body can take antibx. With rife the borrelia cannot go into cyst form. A number of folk have failed to be helped by antibx yet are helped with rife. You can also get a device cheaply, go on rifeforums.
  10. Daffodil

    Daffodil Senior Member

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    HI Brenda. I have not read much about those alternative protocols.....I know some people do well on the herbal Lyme things..perhaps I will look into that. I have already bought the non refundable plane ticket and paid for the accomodations in Reno...maybe I will just fly there if my chest pain is a little better....and see what KDM says..I would have to see him before June anyway, since people have to see him face to face at least once a year....

    Hi Mary...well, what I did is, type everything out for the cardio...brief history and symptoms in point form, so I don't forget things. I will just hand it to her. I called it "myalgic encephalomyelitis" and not CFS. I think she might take me seriously because I was referred to her by one of the most famous infectious disease specialists here and she gave me an appointment pretty quickly, even though wait times should have been longer. blah..more doctors lol
    xoxoxo
    merylg and brenda like this.
  11. maryb

    maryb iherb code TAK122

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    @Daffodil
    take it easy until Tuesday - hope they do the tests at your appt.
  12. Daffodil

    Daffodil Senior Member

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    thanks mary:). i know they will do EKG and ECHO before i see the doc....
    xoxoxoxo
  13. Daffodil

    Daffodil Senior Member

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    hi all. so i had the ECHO and EKG and i think they were normal because the doctor said nothing. she said i can go ahead and have the IV treatment....but i still have the chest pain and I know the AZT has done something..I know it. I can feel it. Anyway, I go for a stress test in a couple of weeks. I was feeling quite a bit better on the day I saw the doctor so maybe that's why; i just dont know. I am so fed up at being sick and nothing showing up on tests. what's more, i have read so many cases where someone takes AZT for 2 yrs, has normal tests, and drops dead. ugh. anyway, i guess if the stress test is normal, i will just proceed as usual ..what else can i do?
    xox
  14. maryb

    maryb iherb code TAK122

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    @Daffodil
    I'm sure the echo would have picked anything sinister up daff, I mean the heart is in front of the doctor isn't it?
    Okay the ECG is only as good as how your heart is doing at that particular time.
    Did you mention the AZT to the doctor?
  15. bertiedog

    bertiedog Senior Member

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    @maryb - did you have the fructose and lactose test done when you visited KdM? I know you have to fast for both of these and I cannot do fasting. I just have to eat something by 7.30 am at the latest otherwise I am so weak, dizzy and get a horrendous migraine.

    I am sorry to hear that he couldn't help you.

    Pam
  16. maryb

    maryb iherb code TAK122

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    Yes I did and both were okay - you can do it - just have to make sure you have something ready to eat as soon as its finished, the lactose? drink they give you every half hour gives your stomach something to work on. The only way to do is after fasting. It is always at 8.30.9am so not too late.
  17. lnester7

    lnester7 Seven

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    Besides a stress test, I forgot if you have had the Tilt Table Test done??? You might want to kill 2 birds while there. just a thought.
  18. xrunner

    xrunner Senior Member

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    1. You can ask the dr for the report of the echo and read what's in it.
    2. Ask for a Holter (24hr recording), the echo is better but the Holter provides complementary info to be used in conjunction with the echo
    3. If your concerns trouble you, do a another echo with a different dr (my dad got two different opinions!)
    4. Look into a heart mitochondrial protocol
  19. Daffodil

    Daffodil Senior Member

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    hi all. i will take all of your advices. i did mention AZT over and over to the doctor. i actually have not had a Holter for quite some time....i think i will ask for that and TTT...but it will have to wait because of my upcoming trip.

    the reason i worry, is because i have read of cases where cardiac problems just don't show up until the person has a massive fatal heart attack...i have read about this with AZT in particular.

    now i would be remiss if i didn't mention...that the antibiotic protocol is helping me. i have more energy...and the little baking soda and water i take everyday is helping a lot with the brain fog. so overall, if my heart wasn't bothering me this much, i think i would be in pretty good spirits and very hopeful after a very long time of not being hopeful.

    all i hope now is that my heart will be able to take the IV antibiotics.

    i was thinking about whether the improvements have to do with the anti-inflammatories and antibiotics maybe acting as anti-inflammatories...but i have a feeling it is not because of that alone. i think KDM is on to something.

    a friend who saw him recently told me that he says he has a 60-some % success rate over 1 - 1 1/2 years(?) and 97% over 3 years....

    thanks for reading:)
    xoxo
    merylg likes this.
  20. xrunner

    xrunner Senior Member

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    @Daffodil
    There is also the possibility that you are going to feel better after this treatment and your heart problems go away.
    If your doctor has advised to do the treatment then it's more than a possibility otherwise he would not have recommended it. I wish you well.
    merylg likes this.

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