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Lyme, too?

Discussion in 'Lyme Disease and Co-Infections' started by Lou, May 20, 2013.

  1. Lou

    Lou Senior Member

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    I developed a new (some of them old ones that had gone away) set of symptoms last summer that has finally led me to think I may have gotten Lyme.

    I kept thinking something had just reactivated me/cfs symptoms, but the more I read about Lyme the more I think it the new culprit. The symptoms that came on suddenly are pretty spot-on for Lyme.

    I'm sure there's Lyme forums, but since this is the place I trust was wondering if anyone here that may have both these maladies might offer some insight, suggestions as to natural treatments (I'll also take the antibiotics if I get diagnosed.

    Thanks.
    GcMAF Australia and Allyson like this.
  2. Lotus97

    Lotus97 Senior Member

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    There's a small, but significant number of people here with Lyme on Phoenix Rising and 97 threads with "Lyme" in the title
    http://forums.phoenixrising.me/index.php?search/6746189/&q=Lyme&o=date&c[title_only]=1

    I'm trying the Buhner protocol (which uses herbs) before I do antibiotics. I started a thread about here that includes links to his website and some other resources
    http://forums.phoenixrising.me/index.php?threads/buhner-lyme-protocol.23202/

    That said, many of the symptoms of Lyme are similar to other illnesses so it would be good to keep an open mind regarding diagnoses. Especially since Lyme tests aren't that accurate. Some tests are more accurate than others, but none are 100% accurate. There should be at least a couple threads here about Lyme testing (I know there's at least one, but I don't remember where it is).
    Lou and Allyson like this.
  3. Ema

    Ema Senior Member

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    I have both. Feel free to ask whatever you like. I've been on a pretty intense antibiotic protocol for about 18 months now and have seen quite a bit of improvement.

    Ema
    Lou and Allyson like this.
  4. Allyson

    Allyson Senior Member

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    Lou thanks for posting.

    Yes I am looking into it to so glad to see the thread.

    Ema, glad to hear you have had some improvement - that is terrific.

    SO I too am just starting to think about it so would like to know is there a list of known symptoms please.

    Testing is her in Australia is pretty basic i think but i was planning to start with that - GcMAF Australia kindly sent me some info on another thread.
    Best,,


    Ally
    Lou likes this.
  5. Esther12

    Esther12 Senior Member

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    I'd urge caution with Lyme stuff. There are some doctors selling unreliable tests, and then recommending inappropriate treatments based on false positives.

    There is also a danger of false negative results with Lyme testing.

    Also, it seems that Lyme disease can lead to on-going symptoms post-treatment, perhaps like the sort of post-viral thing we see with EBV.

    It does seem like there's a lot of uncertainty and quackery around Lyme, and I'd encourage everyone to be cautious and sceptical about Lyme stuff, and try to get second opinions before deciding to spend a lot of money, or commit to any particular treatment.
    Valentijn, Tito and Allyson like this.
  6. Allyson

    Allyson Senior Member

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    Thanks for that Esther..

    And .... tartnation! - i was thinking finally something simple and testable to have or rule out.... no such luck it seems!

    cheers

    ALly
  7. Ema

    Ema Senior Member

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    Generally good doctors recognize that Lyme is a clinical diagnosis and that testing is only one piece of that puzzle. Testing alone can't make of break a diagnosis because it is understood that there are limitations to the testing. Hopefully new tests will continue to be developed that will make this easier.

    The lymediseaseassociation.org website offers an ILADS approved doctor referral search for those in the US which may help identify doctors that understand the current thinking in terms of Lyme treatment.
    Lou, WillowJ and Allyson like this.
  8. ukxmrv

    ukxmrv Senior Member

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    Can you tolerate the AB's Lou?

    One of the reasons that I have not had a Lyme test(s) is that it's hard to get one that this easy, fast, reliable and cheap.

    Even if I was diagnosed the treatment could leave me out of pocket and sicker than when I started. Decades ago I tried some of the AB regimes and they made me worse off for at least a year. Also tried some of the other supplements used. Don't want to do that again.

    Need to learn more about the severe reactions to treatment and I lost faith in Herx being the whole reason a long time ago.

    My sympathy to people who have been diagnosed with Lyme as it is very hard to treat, takes a long time and doesn't seem to work for all.
  9. Lotus97

    Lotus97 Senior Member

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    GcMAF Australia posted a list of Lyme symptoms in a thread (too tired to remember). The symptoms were very similar to lists for CFS/ME and fibromyalgia. Very confusing stuff. I've had a recurring rash where I was bitten by a tick so I'm pretty sure I have Lyme, but I'm still not 100% sure. Even if I do have Lyme, I still need to get tested for co-infections because those are common with Lyme. I've also heard of someone having a co-infection, but not Lyme (Borrelia). I'm not sure how common that is. I was hesitant to try antibiotics, but I've recently heard from a few people (including Ema) who have had success with them so if the herbs don't work maybe I'll look into that. I'd have to find another doctor and since my current doctor is covered by insurance I don't really feel like dealing with that now.
    Lou and Allyson like this.
  10. Allyson

    Allyson Senior Member

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    Ah yes thanks Lotus it was GcMAF Australia i meant to tag. He might be kind enought ot re-post them for us or give us the thread link.


    I don t recall a bite or a rash but most bite will give me big raised red lumps - esp spiders - so who knows?

    So will cover all my bases .. what else can I do? Not a lot actually.

    Incidentally for anyone in Austrlia - i posted somewere that testing for MTHFkR gene is free here if you have a history of DVT or PE but the pathology company has phoned me to say that is not the case...... they told me that in error - test costs 45 dollars ATM


    ALly

    v
  11. Lotus97

    Lotus97 Senior Member

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    A significant amount of people don't experience a rash after being bitten. Mine didn't appear for the first time until 15 years later. I wasn't too sure until it appeared a second time last fall. Both times it happened a month or two after seeing a chiropractor. One of the places the Lyme bacteria resides is in the spinal fluid so I think the chiropractic adjustments might have reactivated my infection. I experienced a relapse after each time also. My rash was a bullseye rash so it seems extremely likely that I do have Lyme. I'm not sure what I would have done if the rashes didn't appear. I suspected Lyme before the rashes appeared, but after finding out that the tests weren't accurate I didn't know what to do. I showed the rash to my doctor and she didn't know what to think. Most doctors don't know much about Lyme.
    GcMAF Australia and Allyson like this.
  12. GcMAF Australia

    GcMAF Australia Senior Member

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    OK
    this is an old list, so it is not complete
    20 represents a good chance of Lyme
  13. GcMAF Australia

    GcMAF Australia Senior Member

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    This is from about 2006
    The Canadian Lyme Disease
    Foundation published a diagnostic
    questionnaire that they say will help
    guide a person to see if they have LD.
    Twenty (20) YES answers out of the
    seventy five (75) questions gives a
    strong indication. Circle the ones that
    apply and count the YESs.
    Symptoms of Lyme Disease
    The Tick Bite
    (fewer than 50% recall a
    tick bite or get/see the rash)
    1. Rash at site of bite
    2. Rashes on other parts of your body
    3. Rash basically circular and spreading
    out (or generalized)
    4. Raised rash, disappearing and
    recurring
    Head, Face, Neck
    5. Unexplained hair loss
    6. Headache, mild or severe, Seizures
    7. Pressure in Head, White Matter
    Lesions in Head (MRI)
    8. Twitching of facial or other muscles
    9. Facial paralysis (Bell's Palsy)
    10. Tingling of nose, (tip of) tongue,
    cheek or facial flushing
    11. Stiff or painful neck
    12. Jaw pain or stiffness
    13. Dental problems (unexplained)
    14. Sore throat, clearing throat a lot,
    phlegm ( flem ), hoarseness, runny
    nose
    Eyes/Vision
    15. Double or blurry vision
    16. Increased floating spots
    17. Pain in eyes, or swelling around
    eyes
    18. Over-sensitivity to light
    19. Flashing lights/Peripheral waves/
    phantom images in corner of eyes
    Ears/Hearing
    20. Decreased hearing in one or both
    ears, plugged ears
    21. Buzzing in ears
    22. Pain in ears, over-sensitivity to
    sounds
    23. Ringing in one or both ears
    Digestive and Excretory Systems
    24. Diarrhea
    25. Constipation
    26. Irritable bladder (trouble starting,
    stopping) or Interstitial cystitis
    27. Upset stomach (nausea or pain) or
    GERD (gastroesophageal reflux
    disease)
    Musculoskeletal System
    28. Bone pain, joint pain or swelling
    carpal tunnel syndrome
    29. Stiffness of joints, back, neck,
    tennis elbow
    30. Muscle pain or cramps,
    (Fibromyalgia)
    Respiratory and Circulatory Systems
    31. Shortness of breath, can't get
    full/satisfying breath, cough
    32. Chest pain or rib soreness
    33. Night sweats or unexplained chills
    34. Heart palpitations or extra beats
    Endocarditis, Heart blockage
    Neurologic System
    35. Tremors or unexplained shaking
    36. Burning or stabbing sensations in
    the body
    37. Fatigue, Chronic Fatigue Syndrome,
    Weakness, peripheral neuropathy
    or partial paralysis
    38. Pressure in the head
    39. Numbness in body, tingling,
    pinpricks
    40. Poor balance, dizziness, difficulty
    walking
    41. Increased motion sickness
    42. Lightheadedness, wooziness
    43. Psychological well-being
    44. Mood swings, irritability, bi-polar
    disorder
    45. Unusual depression
    46. Disorientation (getting or feeling
    lost)
    47. Feeling as if you are losing your
    mind
    48. Over-emotional reactions, crying
    easily
    49. Too much sleep, or insomnia
    50. Difficulty falling or staying asleep
    51. Narcolepsy, sleep apnea
    52. Panic attacks, anxiety
    Mental Capability
    53. Memory loss (short or long term)
    54. Confusion, difficulty in thinking
    55. Difficulty with concentration or
    reading
    56. Going to the wrong place
    57. Speech difficulty (slurred or slow)
    58. Stammering speech
    59. Forgetting how to perform simple
    tasks
    Reproduction and Sexuality
    60. Loss of sex drive
    61. Sexual dysfunction
    62. Unexplained menstral pain,
    irregularity
    63. Unexplained breast pain,
    discharge
    64. Testicular or pelvic pain
    General Well-being
    65. Unexplained weight gain, loss
    66. Extreme fatigue
    67. Swollen glands/lymph nodes
    68. Unexplained fevers (high or low
    grade)
    69. Continual infections (sinus,
    kidney, eye, etc.)
    70. Symptoms seem to change,
    come and go
    71. Pain migrates (moves) to different
    body parts
    72. Early on, experienced a "flu-like"
    illness, after which you have not
    since felt well.
    73. Low body temperature
    74. Allergies/Chemical sensitivities
    75. Increased affect from alcohol and
    possible worse hangover
    Count the number you have circled.
    Lou likes this.
  14. GcMAF Australia

    GcMAF Australia Senior Member

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    I score about 23-25
    so Lyme is a definite possibilty for me
  15. GcMAF Australia

    GcMAF Australia Senior Member

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    some alternatives to antibiotics include
    • Cowden Protocol
    • Byron White
    • High salt and vitamin C
    also there is some work being done with GcMAF
    Lou and Allyson like this.
  16. WillowJ

    WillowJ Senior Member

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    I had a bulls-eye rash right after I was in a brushy area. This was after I already had ME. I developed worse neurological and eye symptoms. respiratory, too, if I recall correctly. I didn't know what was going on (and didn't realize the significance of the rash at the time) and wasn't diagnosed until years later.

    I don't have much to say about testing except that it's inadequate. There's supposed to be a new one for Lyme although I don't know much about it. The coinfection tests are also inadequate.

    I also don't have much to say about treatment. Sorry.
    Allyson likes this.
  17. Allyson

    Allyson Senior Member

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    Thanks for these GC Maf Aus

    Here ar my answers


    Symptoms of Lyme Disease
    NO recall of a tick bite or the rash)

    Head, Face, Neck

    6. Headache, mild or severe,


    7. Pressure in Head,

    White Matter
    Lesions in Head (MRI) no My MRI was clear

    8. Twitching of facial or other muscles

    well yes i get occasional muscel twitchting


    facial flushing - yes i have this a bit but i have rosacia as well

    11. Stiff or painful neck

    12. Jaw pain or stiffness i have a TMJ so yes

    14. Sore throat, clearing throat a lot,
    phlegm ( flem ), hoarseness,

    Eyes/Vision
    15. occasional blurry vision

    18. Over-sensitivity to light yep

    Ears/Hearing
    20. plugged ear - right ear - not real bplugged but feels like something in there

    21. Buzzing in ears - two short episodes of tinnitus




    23. Ringing in one or both ears - yep two short episodes of tinnitus

    Digestive and Excretory Systems yep all these
    24. Diarrhea
    25. Constipation
    26. Irritable bladder (trouble starting,
    stopping) or Interstitial cystitis
    27. Upset stomach (nausea or pain) or
    GERD (gastroesophageal reflux
    disease)

    Musculoskeletal System
    28. Bone pain, joint pain or swelling
    carpal tunnel syndrome
    29. Stiffness of joints, back, neck,
    tennis elbow yep
    30. Muscle pain or cramps,
    (Fibromyalgia) yep constant but rellieved by d- ribose

    Respiratory and Circulatory Systems
    31. Shortness of breath, can't get
    full/satisfying breath, yep


    33. Night sweats or unexplained chills

    34. Heart palpitations or extra beats

    Neurologic System
    35. Tremors or unexplained shaking

    37. Fatigue, Chronic Fatigue Syndrome,
    Weakness

    39. Numbness in body, tingling, i get tinngling in hadns fee d tan abdo occasionally - not sure if this is peripheral neuropathy


    40. Poor balance, dizziness, difficulty
    walking yep

    42. Lightheadedness, wooziness


    44. irritability,


    47. Feeling as if you are losing your
    mind

    48. Over-emotional reactions, crying
    easily
    49. insomnia
    50. Difficulty falling or staying asleep


    52. anxiety - well i get anxious feeling somethisse but usually whe i am upright so i thin k it is from POTS/OI

    Mental Capability


    54. difficulty in thinking
    55. Difficulty with concentration or
    reading


    57. Speech occasionally slurred

    General Well-being
    65. Unexplained weight gain,
    66. Extreme fatigue


    69. Continual infections chest and throat usually anytime I do not take vitamin c

    70. Symptoms seem to change,
    come and go

    71. Pain migrates (moves) to different
    body parts

    74. Allergies/

    75. Increased affect from alcohol and
    possible worse hangover

    ....................................................................................................................................................................

    Count the number you have circled.

    i got 42

    (Amazing - just ask a simple question and you get the answer to life, the universe and everything!)


    wow the symptoms are so similar to ME/cfs aren't they?


    something to think about.

    interesting that vitamin c helps and high salt intake - as for POTs/OI

    Cheers and many thanks again,

    Ally
    GcMAF Australia likes this.
  18. GcMAF Australia

    GcMAF Australia Senior Member

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  19. GcMAF Australia

    GcMAF Australia Senior Member

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    Allyson likes this.
  20. GcMAF Australia

    GcMAF Australia Senior Member

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    Yes I think at least 90% of CFS/ME people in the US were reported to be Lyme positive by 1 doctor
    Allyson likes this.

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