confused-not sure if CFS/ME or not

Discussion in 'Fibromyalgia Main Forum' started by jentaylor728, Oct 21, 2014.

  1. jentaylor728

    jentaylor728 Member

    Hello, I'm new here-I like this forum-seems to be pretty active.

    well, here goes (one word of advice..this is going to be a novel, so go get a tall glass of grape juice or
    something:) )

    I've been to every specialist imaginable--no one has a clue.
    Here's a list of my current symptoms.....

    every few days 5 1) concentration problems..short term memory..sometimes
    VERY it's worst could remember who the President
    was for 5 seconds, couldn't remember how to fold a shirt, etch

    TESTING... brain MRI-mostly normal, neurologist, Nero -psychological testing--normal, then sent to sleep doctor. Had a c-pap machine that I used faithfully the last 9 years that has really made no difference..switched me to bi-pap..severe memory problems went they've started again..sleep doctor has no clue..sent me for a mask refit.lady there looked at my machine download and said everything looked fine..wonders if I have obstructive sleep apnea.

    daily... 8 erratic sleep patterns 2) sleep apnea & narcolepsy
    constant 8 3) severe long term memory problems (had ECT in 2000)
    constant 8 3a)short term memory issues
    occasional 9 4) swollen glands under right ear-twice in 3mos
    constant 5
    5) constant stiffness, soreness with no swelling or
    rednesss ..need support up/down steps-getting
    every few days 4 6) headaches ...not in same place
    constant 8 7) extreme fatigue..can sleep 14hrs and still fall asleep at
    work or at stop lights- I take maximum dosage of
    nuvigil 250.
    8) about 2 or 3 nights of "restful" sleep per month
    occasional 6 8a) occasional, sometimes severe jumping, twitching (take
    lithium for bi-polar)
    every few days 9 9) intermittent severe grinding of spine when sitting up
    in bed-started last 2 months
    constantly 7 9a) neck pain - C-4,C-5,C-6 fused in 2005..degeretive disk
    every few weeks 7 10) intermittent dizziness upon rising and laying down
    (bed spins) & looking up
    constant 7 11) constant constipation & diarrhea
    every few months 6 12) intermittent numbness & tingling mostly in
    arms/hands but has been in head/legs/toes.

    TESTING- had cervical MRI..a little worse but nothing that would cause numbness/tingling/twitching
    last few years 5 13) drained then immediately fill again --reoccurring
    breast cysts
    14)uterine fibroids-one size of a
    baseball/experiencing menopause/had d&c
    last 10years 15) abnormal pap smears/cauterization
    constant 3 16) TMJ
    every other week or so 3 17)occasional heartburn
    2 yrs 18) high cholesterol- no meds-good cholesterol is 92- total 275-just diagnosed
    last 5 yrs or so 6 19) tender spots all over head
    last 10 yrs 20) sense of smell has decreased dramatically
    frequently 5+ years ago..not currently 21) sleep paralysis upon waking

    current meds, including those listed above:
    1) lithium 3 tablets daily, 2 tablets next day alternating-300mg
    2) synthroid (low thyroid) 1xday 25mcg
    3) lexapro 1 1/2 tablets - 20mg
    4) wellbutrin 2xdaily 150mg 12sr l
    5) nuvigil 250 mg 1x day
    6) B12 500mcg 1xday
    7) c-pap (for 8yrs, then bi-pap (since june of 2014) - still snoring while using machine- I think i recall a doctor telling me i had a very narrow throat ???
    bi-pap 19/15psi
    8) Fish oil 2 tablets 227 7mg
    9) evening primrose
    10) D-3 1000iu one tablet
    11) Lamotrigine- 200mg 1 tablet

    averaging 8.25 hrs of sleep over last 10 days

    ok..if you're still with me, you deserve a cookie or something ;)

    a little bit more (I promise..only a little)
    I'm 5ft 1, female and weigh 75 pounds
    I have a very caring and supportive husband
    but this is DRIVING ME CRAZY.

    Does anyone think I may have cfc/me..if so, what do I do... the closest doctor I could find on this board is 4hr away..I live in central PA.

    ANY advice, comments, observations would be much appreciated !
  2. Nanie46

    Nanie46 Moderator

    Hi Jen,

    I sent you a private message.

    You have many symptoms of tick-borne infections so I suggest a good eval for those by a Lyme literate MD.

    Central PA is a hotbed of tick borne diseases.

    Several people in my family have them and a friend of my sister's was diagnosed with all sorts of neurological problems, mental problems, etc when she really had tick-borne infections. She is getting her life back now after finding a Lyme literate MD who diagnosed her and is treating her.
  3. jentaylor728

    jentaylor728 Member

  4. jentaylor728

    jentaylor728 Member

    te="jentaylor728, post: 1783732, member: 265414"][/quote]
    Hello.. Thanks so much for your response.
    I neglected to mention that I was tested for Lyme by my GPA and the results were negative. My father has had Lyme twice.. Those pesky ticks r everywhere. How accurate are the tests? Thanks again and have a great day!
  5. Nanie46

    Nanie46 Moderator

    Jen, The tests are VERY inaccurate. My tests were negative and I have chronic Lyme. Happened to many others too. A Lyme literate MD knows that Lyme and related coinfections should be a clinical diagnosis, based on history, symptoms, exam and labs....not just a single test. That is why there are soooo many chronically ill people out there....mainstream doctors just don't get it.
    Last edited: Oct 23, 2014
  6. Nanie46

    Nanie46 Moderator

    From Dr Burrascano's "Advanced Topics in Lyme Disease", he writes:

    "The suggestion that two tiered testing, utilizing an ELISA as a screening tool, followed, if positive,
    by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an
    adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic
    western blots. I therefore recommend
    against using the ELISA. Order IgM and IgG western blots
    -but be aware
    that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate
    early from late disease, but it does suggest an active infection. When late
    cases of LB are seronegative, 36%
    will transiently become seropositive at the completion of successful therapy."

    The ELISA is a Lyme Screen and is the test that most doctors use to first test for Lyme. Many drs will not even do a western blot if the ELISA is negative. You can see that Dr B says that the ELISA is not sensitive enough to use as an adequate screen.

    Even the western blots done by typical labs like LabCorp and Quest are usually negative because the criteria that the CDC has set up to be read as "positive" is extremely hard to meet, plus there are many strains of Borrelia in the US and the test only checks for ONE of them.

    There are many other reasons why the tests are so unreliable.

    Lyme should NEVER be ruled out on the basis of just a negative lab test, however mainstream doctors do this all the time, leaving thousands of people sick and suffering.
  7. Nanie46

    Nanie46 Moderator

  8. Nanie46

    Nanie46 Moderator

  9. Nanie46

    Nanie46 Moderator

    Notes from the ILADS (International Lyme and Associated Diseases Society) Conference held this month in Washington D.C. are in the following link. This is the organization that Lyme Literate Practitioners belong to.

    Igenex is the lab that most LLMD's use.

    LLMD's say that if one Lyme specific band is found on the western blot, this shows exposure to Lyme. The bands that are mentioned in the link above as being Lyme specific are: 18, 23, 31, 34, 39, 83, 93.
  10. jentaylor728

    jentaylor728 Member

    Thank u so much. I guess I'll search the Web for a good
    Hello.. Thanks so much for your response.
    I neglected to mention that I was tested for Lyme by my GPA and the results were negative. My father has had Lyme twice.. Those pesky ticks r everywhere. How accurate are the tests? Thanks again and have a great day!
    Thanks so much.. I'll search the Web for a good Dr. In PA or MD.. Thank you again!
  11. Nanie46

    Nanie46 Moderator


    You're welcome.

    Don't trust what you find on the web about Drs who can treat Lyme. Even Infectious disease doctors are usually not Lyme literate.

    The lists of LLMD names are usually kept private.

    The best way to find a LLMD is to go to
    then click on flash discussion....sign up for on "Seeking a Doctor" on "Post New Topic" and create a post asking for a LLMD in PA or Maryland....put that in the title of the post so people can easily see what you need.

    You will receive one or more private messages with names.