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Saw doctor today.....

Discussion in 'ME/CFS Doctors' started by Frickly, Sep 14, 2009.

  1. Frickly

    Frickly Senior Member

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    She said my ATP and mycoplamal numbers have not been improving in the last couple of months so we are switching antibiotics. She also said I still show an active EBV. My ATP/glutithione injections are a good antiviral but she said that my mycoplasmal infection is making it difficult for my body to recover from the EBV. I am going to start valtrex to see if this helps as my neck, jaw and even gums have been very swollen (she says) as the result of EBV. I think this is why my teeth are falling apart. I hope I don't start herxing all over again as that was a horrible experience.:( Mabey I should wait to start the new antibiotic until my husband gets back in town? On the other hand...I am excited to find out if the new antibiotic will knock out this infection and help me to get to a new level. Seems I have hit a plateau.:rolleyes:

    Anyway....just thinking out loud.

    Take care,
     
  2. Michael Dessin

    Michael Dessin Senior Member

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    Thanks

    Thanks for this update Frickly!! :D
     
  3. KC22

    KC22 Senior Member

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    Hi Frickly,

    I am having real trouble with a mycoplasma infection. My numbers are not going down and the doctor thinks that is my driving infection.

    May I ask what antibiotic your doctor is changing you to. I've been on doxycycline for a long time.
    I would appreciate any ideas.

    Good luck with your new med...
     
  4. Frickly

    Frickly Senior Member

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    Kc22

    I started with doxy but could not tolerate it as I started vomiting every morning. :( Then she switched me to azithromycin which I have been on for several months. I just started Ceftin and will have to wait and see if I improve. It seems these bacteria are very difficult to get rid of.

    Research has shown that patients with mycoplamal infections respond to particular antibiotics (doxycycline, minocycline, ciprofloxacin, azithromycin and clarithromycin). How long have you been on the doxy?
     
  5. KC22

    KC22 Senior Member

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    Frickly-

    I have been on doxy for 2 1/2 years. I was azithromycin in between, but had a bad reaction to it. I can handle the doxy, but I don't know if it is working.

    I have never heard of Ceftin. Thanks for the info on other antibiotics. I don't know why Dr. Lerner is not trying something else.

    Keep us posted as how you are doing on the Ceftin. Hopefully, this will work for you.
     
  6. Victoria

    Victoria Senior Member

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    Dear All,

    it sounds like you are really having trouble with these bacteria. I can only imagine how frustrating it must be (having had a parasitic infection for a couple of years that was resistant to everything imaginable).

    When Cort puts up my article on Aromatherapy, you might like to read the short bit on Ti Tree oil (towards the end of the essential oil list).

    I wonder if it might help many of you with all your bacterial (& others with viral infections) which are hard to treat.

    I have to be honest here and say I never thought to use essential oils back in the couple of years I had this parasitic infection. They were the days when my brain fog was at it's worst & I could barely get through my work day (let alone use some of my knowledge on alternative therapies).

    I went through a period of serveral years, when it took me up to 3 hours to write "apples" on my shopping list. Every time I walked to the kitchen bench to do so, I would forget why I went to the kitchen. And so on........

    God only knows how I kept my job. I think there must have been some sort of sub-conscious "survive or drown" will power. Even today, I survive at work on the fact that I've been in this job 16 years & it's incredibly repetitious. My Boss asked me to do a research task the other day & I couldn't do it. I had a stress attack when I sat at my desk to actually carry out the task & could not think straight at all. It was the sort of thing I used to be able to do so easily.

    So check out the article (even if you're not interested in Aromatherapy itself).

    Victoria
     
  7. Frickly

    Frickly Senior Member

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    Thanks...

    Victoria, I'll check it out.
     
  8. Frickly

    Frickly Senior Member

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    Not happy...

    I started my new antibiotic and am in lots of pain. I think just a herx reaction but brings back all the pain I had at my sickest and worse. I know this means that it is doing it's job but I just want to feel normal again.The back of my neck burns and I have to keep it supported. My hips and legs started hurting again and can't make it through the grocery store without sitting somewhere. I am getting fevers and feels as though my skin is on fire. What can I do to lesson the symptoms?
     
  9. Jody

    Jody Senior Member

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    Frickly,

    I'm afraid I don't have any answers to this.

    I am sorry to hear what you're going through and I hope it passes quickly.
     
  10. KC22

    KC22 Senior Member

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    Hi Frickly,

    Sorry I don't have any ideas on how to lesson your die-off.

    Do you have anyone who can do your shopping for awhile. When I started valcyte,
    I could just exist on the couch. Nothing worked.

    I hope this is over for soon for you.....
     
  11. Jody

    Jody Senior Member

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    Frickly,

    I'm not sure on this but what about something like an epsom salt bath?

    I think this is supposed to help with detoxification.
     
  12. Lisa

    Lisa Senior Member

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    Hi Frickly,

    Jody's right about baths. When I was asking my doctor about gentle ways to detox a few weeks ago, he said epsom salt baths would help. Don't have a tub or I could let you know if it worked. >.<

    If you have a large break between dosages of things, like six or eight hours, you might ask your doctor about taking activated charcoal. It's been doing wonders for Jeremy and I once we moved supplements around so we could take it twice a day. I think it has been one of the biggest things to start pulling us up out of our summer crash finally.

    Can your hubby do some light massage on your legs or other really painful muscles?

    Lots of Vitamin C and some hydroxycobalimin to help scrub up the toxins?

    A gallon of extra water drunk a day to aid in flushing it out? (doesn't have to be a gallon, but was just thinking a lot of water)

    Hang in there Frickly. HUG!

    Lisa :)
     
  13. Finch

    Finch Down With the Sickness

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    Antiobiotic Die-off help

    Hi Frickly,

    I'm sorry you're having such a rough reaction to the new antibiotic, but as you said, that means it's working! I was reading through your post and thinking of all the die-off remedies I could tell you about, but Jody and Lisa (hi Lisa - almost didn't recognize you in your new photo) have beaten me to it!

    The epsom salt bath is a very good one. I stay in it until I start to sweat - that helps remove some of the toxins. I've read that you should shower off afterward so your skin doesn't reabsorb the toxins. That seems to make sense. I always thought I shouldn't moisturize afterward, because that would seal it in. Just my own idea there.

    Activated charcoal is something I've tried, but it doesn't seem to help me much. That may be because I have trouble getting consistent with it, as it's really hard to find a period of time where I can fit it in. Others say it can be very helpful, though. Just be sure to take it at least two hours apart from any medication, supplement, or even food, or it will soak up the medication instead of just the toxins. Some people also say chlorella does the same thing. I use chlorella myself and do think it helps some.

    The vitamin C also helps to soak up the toxins. I like to use Emergen-C, which you can get at Walgreens. It's got 1,000 mg of vitamin C and lots of B vitamins and other good stuff in a packet that you just add water to. It even tastes good!

    This may sound really strange, but try eating a couple of glucose tablets or a couple packs of Smarties, and see if that helps. It does with the protocol I'm on. The glucose helps absorb the toxins. I hate to do this, as I avoid sugar, but it works, so sometimes I do it.

    My protocol is the Combined Antibiotic Protocol (CAP) for persistent chlamydia pneumoniae infection. We use n-acetyl cysteine (a supplement), and a combination of three or more antiobiotics to eradicate the bacteria in all three of its life phases. In my case, the antiobiotics are doxycycline, azithromycin, and Tindamax. The Tindamax is taken in 5-day pulses every 3-4 weeks, and that is the roughest part of the protocol. It makes me feel the way you're feeling right now. The trick for the CAP is to start slowly and build up as each antibiotic is added. There are also several supplements that support the protocol.

    For me, when I'm doing the Tindamax pulses everything feels awful for the five days I'm taking it and at least a week afterward. These same reactions occurred at the time of starting the n-acetyl cysteine and each of the other two antibiotics. With those, they gradually improved, then I knew I was ready to add more. The Tindamax is the "big gun," however, and it'll be some time before it doesn't cause the reactions. When that happens, I'll know I'm making progress!

    What antiobiotic are you trying?

    Whatever else you do, you also need to give your body adequate rest. Pushing yourself at this point won't help anything, so take it easy! And drink lots of water like Lisa said!

    I hope some of these ideas are helpful for you. I'll let you know if I think of any more!

    Wishing you wellness,
    Finch
     
  14. Frickly

    Frickly Senior Member

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    Thanks...

    for all the ideas. I totally forgot about the epson salt baths. In addition to my antibiotic I started taking valtrex for the EBV. I think this was too much so I stopped and might start again once my body gets used to the antibiotic. I didn't like the side effects that were listed for Valtrex and my chest started hurting which was kind of scary. I have also been getting those darn headaches again.

    Anyway......epson salt, water, smarties :D, charcoal, vitamin c.....thank you.
     
  15. Jody

    Jody Senior Member

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    Frickly,

    Heavy on the Smarties. Just a piece of friendly advice. :D

    Hope you begin to feel better very soon.
     

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