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Is Lyme Disease really just CFS?

Discussion in 'Lyme Disease and Co-Infections' started by Misfit Toy, May 26, 2013.

  1. Jarod

    Jarod Senior Member

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    planet earth

    You can buy generic doxycycline online, but I have no idea if the quality is as good. There are at least three different generic manufacturers.

    I think the CPNhelp.org site may be something people may want to check out if they are considering abx. They have good ideas for vitamins and have some good experience.

    CPN can be tested for somewhat reliably also if the doc can interpret the tests correctly.
    The Spitfire likes this.
  2. Misfit Toy

    Misfit Toy Senior Member

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    Jarod, I just looked at that site. I had mycoplasma pneumonia once.

    One of the reasons I started thinking about Lyme is because a couple of weeks ago I was asleep and my left foot woke me up because it was in a Charlie horse. Out of nowhere this just happened while asleep. It took me awhile to get out of it and then my fibro pain skyrocketed. I get Charlie horses a lot in that foot, but never while asleep.

    I feel like I have developed more pain and symptoms that are odd. I have a mucous like cough. Every winter, since 2009, I come down with a wicked infection that causes me to be super sick. For months.

    There have been major changes that are just diagnosed as CFS. I just don't know anymore. I have MAJOR inflammation and I feel like I am not as intelligent as I once was. It takes me a bit to get many jokes. I can't always connect the dots.

    Something just isn't right and the pain which was absent for years, is now taking over my life. I've developed insane allergies, my sleep is nuts and it all came on in 2009. I have said that its because I am going through the change, but what if I am wrong. Perimenopause doesn't cause Charlie horses in the left foot that can be daunting to deal with.
  3. Jarod

    Jarod Senior Member

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    The Spitfire

    Ya that chlamydia is nasty stuff and can get everywhere.

    I didn't know that cramping is one of the symptoms of lyme. I happen to have those occasionally too. Not necessarily sleeping though.

    Potassium and magnesium can help deal with the leg crams and foot cramps.

    I'm wondering if I started off with lyme disease back in the early 80's. Had a bull eyes rash at the time, but nobody knew anything back then. I don't have an opinion if lyme is the root cause or not.

    Everything can pile on, so you may have more than one thing by now. There is just so many potential insults to ones' health to avoid. It is almost impossible not to get taken down sooner or later without a good detox system running.

    One thing I'm sure about, is this crud is not going away. It's only possible to achieve remission through a combination of things including drugs and vitamins. Maybe it's possible to do it with just vitamins, but one can't be real sick and damaged to pull it off.

    Hopefully your gut is in good shape, and you can pull out soon.

    You might have an inflammation problem too by the looks of your head.:D
    The Spitfire likes this.
  4. Moxie

    Moxie

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    Yes, it's awful. Apparently the last plant that was making it was destroyed in Hurricane Sandy and they have no plans to re-build. We're currently subbing minocycline in our practice. It's a great antibiotic, but not nearly as cheap as doxy used to be.
  5. Misfit Toy

    Misfit Toy Senior Member

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    No,this thing isn't going away, nor will it. I have been sick too long and I have never had a remission. Never. I am too far down the hole. Again, not sure if I have Lyme and I know it didn't start as Lyme.

    Yes, my head is a little swollen and inflamed. My eyes, too!
    Jarod likes this.
  6. GracieJ

    GracieJ Senior Member

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    Have to admit I'm just a little bit tired of the latest "if you have CFS, it's really Lyme" routine, as if it were a proven thing. I have nothing against testing for it, of course, but we don't need to be twisted into another box, either.

    Have to admit I'm really tired of "if you have CFS, it's really _____________________ " fill in the blank.

    Always followed by "the answer," of course.

    Really... just want to show researchers and others how much coping is involved with the syndrome. There is much to be managed, not oversimplified or hastily answered, or discounted over the long-term.
  7. Misfit Toy

    Misfit Toy Senior Member

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    I understand Gracie. I feel the same way. An interesting factoid; I called my acupuncturist today and said, "It's been a week and I haven't received my herbs." Her response, "I am so sorry, I am having a hard time putting a formula together for you because I am just stumped." I went to her for irregular periods and perimeno. It's been a lifesaver with that. BUT, because I am not responding in a more favorable way with CFS...she is stumped. I have talked to her about this before and said, "I have had this for 24 years, I am not expecting a cure. I don't expect much from this." Well, her ego is so big, if you ask me, and the fact that she has lyme...and treats many with Lyme.

    I don't know. I know this; I just want to get better like all of us on here. If I do have Lyme, or with my CFS, I am just so sick of this. I hate this life. I hate pain and not being able to travel...my dream.

    There are illnesses out there that aren't cookie cutter. CFS is not the only one. Why do these "people" think that is the case? Life, and so much, is bigger than anything you learn in a book.

    Go to the Amazon, there are more creatures there and unknown creatures. Things even the most knowledgable scientists have never seen or heard about in a book. Human beings make mistakes. We all know that on here. We deal with it all the time, unfortunately.
    Valentijn and GracieJ like this.
  8. cigana

    cigana Senior Member

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    Lyme MD's do not consider the percentage to be this high, I've heard much lower quoted (eg. 30%). This page for example quotes 50%:

    http://www.ilads.org/lyme_disease/about_lyme.html


    One of the problems with Lyme is that, in its chronic form, it will infect people in different ways. Depending on personal genetics, it will reside in different parts of the body and hence cause different symptoms. I really don't think there is any such thing as "classic" chronic Lyme symptoms, though most of the "classic" symptoms quoted in this thread are more relevant to the acute form of the disease. There is just no way to distinguish chronic Lyme and CFS via symptoms.

    They have exactly the same problems as us: post exertional fatigue, memory problems, cognitive difficulty, sleep disorders, gut problems, mitochondrial dysfunction, POTS, weak adrenals, multiple infections, immune dysfunction, sensitivity to supplements, etc. etc.

    They just usually come in from a different perspective, because they remember getting a bite... whereas we don't, and so we think that Lyme is unlikely. Speaking for myself, I was surprised, as I live in a big city and did not ever spend much time in the country, that they found Borrelia in me.

    Research into chronic Lyme is poorly funded...we don't know how prevalent it is or why it is that some people will get ill only years after being infected

    Btw, if any of you haven't seen this video by a prominent Lyme MD, Richard Horowitz, it's well worth viewing (see the 2nd video down, about 24minutes in):

    http://lookingatlyme.blogspot.co.uk/2012/05/lyme-disease-forum-ny-21-may-2012.html

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