My doctor suspects FIBRO/CFS but i feel like there is more to it. Can anyone relate? Possible lyme?

Discussion in 'Fibromyalgia Main Forum' started by happyinlove, Sep 27, 2014.

  1. happyinlove

    happyinlove Member

    HI all,

    I would like to share my story in hopes someone here may be able to give me some guidance, or have had a similar experience.

    Chronic constipation starting in October 2013 (bowel movements have not been the same since)

    Root canal in November

    Pregnancy in December( Started to feel spaced out, sort of like a drunk feeling/sensitivity to artificial lighting)

    Miscarried after only 2 weeks, and felt ok for 3 weeks, and then randomly one day the spaced out/drunk feeling/artificial lighting sensitivity came back and has been constant since January (8 months)

    I saw a gastro in February who found yeast overgrowth in my stool. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who put me on nystatin/diflucan for a month, and i had no relief in symptoms.

    Things i have tested for:


    Diabetes-Negative (Although blood sugar slightly out of range)

    General blood testing- Ok (neutrophils that fight bacteria 2 points out of range at last blood test), overall white blood count within range

    CT head scan-Normal

    Food allergy testing shows no allergies

    Doctor has tried (Metronidazole)Makes symptoms 10x worse

    Nystatin and diflucan make symptoms feel 10x worse

    GP a while ago said i had a sinus infection. I had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.

    Western Blot for lyme-Negative


    Constant drunk/high feeling

    Lack of focus/ Poor memory

    Loss of libido

    Bouts of fatigue

    Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.

    Sound sensitivity

    Head pressure around temples and eyes pressure sometimes

    Stabbing sensations sometimes at temples

    Undigested food in stools

    Hard pellet stools/ mucus in stools

    Carbs/Sugar/Caffeine make drunk feeling worse

    Random itching over skin but with no rash

    Heavy feeling eyes/Sometimes feel very sleepy after food

    Feel at best first thing in the morning

    Sneezing/runny nose

    Post nasal drip (constant feeling of build up in throat)

    Sore tip of tongue, sometimes middle/back area of tongue slightly white coated

    Itchy anus/itching inside ears/nose

    Chronic vaginal yeast infections/vaginal itching

    Acid Reflux


    Cold hands and feet sometimes

    Tingling in hands and feet

    Stabbing sensations over body

    Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck

    Recently doctor told me i have a heart murmur

    Had a food sensitivity test that showed no food sensitivities, but a high IgE

    Random body twitching all over. (in eyes, stomach, back, legs, and feet)

    Urgency/frequency of urination- Saw urologist who saw no infection present, and did a cystoscopy which showed no issues with the bladder. Urologist suspects possible chronic cystitis

    Stiff feeling hands

    Back pain middle/lower area- stabbing sensations sometimes

    Nausea sometimes

    Tummy pain/bloating sometimes

    Chest pain sometimes

    Extremely achy neck most of the time

    Motion sickness I never had before this started

    Random vertigo, especially when tilting head

    Positive test for Epstein Barr Virus

    I want to have hope, but I am losing it rapidly. They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have enlarged liver which really scared me, because I know enlarged liver can cause some threatening complications. I am only 25, and I feel helpless.

    These past few weeks i have also had this weird sensation in my legs which is hard to explain. It is in the calf muscles. Stabbing sensations, pain, tingling, and sometimes it even feels like my legs are heavy and shaky to walk on.

    I saw my Dr who told me: ANA and RA tests were negative, my cd57 (measuring immune health was 64), she said this is pretty low seems most healthy immune systems are 180+, and my ATP(energy to cells was 19).
    My doctor also did a neuropathy test due to the tingling etc and said that my numbers are in the 80's, but should be in the 100's, so i have neuropathy, but we don't really know why yet. She gave me ATP fuel which has helped significantly with the weird sensations, but i still get some tingling/weird vibrations in my feet. I am a bit upset that she has not done more tests as it seems my immune health is very poor. She suspects fibro/cfs but i believe there is more to this. I know this is a lot to take in, but has anyone else had a similar experience?
  2. RadioFM

    RadioFM Active Member

    Last edited: Sep 28, 2014
  3. Nanie46

    Nanie46 Moderator

    Hi happyinlove,

    I'm so sorry that you are feeling so sick and not getting any answers. It is so frustrating and I understand how you feel.

    It certainly is possible that you have Lyme disease and other coinfections that are often found with Lyme such as Bartonella, Babesia, Ehrlichia, Protomyxzoa Rheumatica and more. Testing for Lyme is very unreliable for many reasons and a negative test result should never rule out lyme by itself.

    There are over 100 strains of Borrelia (Lyme) in the US and standard tests only include one strain in their they leave out many lyme specific bands on the western blot. One strain that has just recently been recognized and does not show up on standard lyme tests is Borrelia miyamotoi. Lyme is Borrelia burgdorferi.

    Dr Horowitz of NY ( a Lyme literate MD) recently wrote a book titled,"Why Can't I Get Better?" that may be helpful.

    Dr H says that if only ONE of the following bands shows up on a Lyme western blot, a person has been exposed to Lyme: 23, 31, 34, 39, 83/93. Do you have a copy of your western blot? But keep in mind, that unless it was done through Igenex, the lab would have left out testing for some lyme specific bands.

    I have Chronic Lyme and my western blots were all "CDC negative". I did test positive for a couple coinfections.

    You could find a LLMD and get a thorough evaluation. A LLMD would consider your history, symptoms, exam and do further testing for Lyme and coinfections. You do have many symptoms of Lyme disease and coinfections.

    To find a LLMD you can go to, click on flash discussion, click on "Seeking a Doctor" board, and then click on "Post New Topic". In the title of your post you can put your state/area where you need a LLMD.
    Someone will send you a private message. LLMD's are not plentiful, so many people travel to see one.

    You could also consider finding a Functional medicine or Integrative medicine or Lyme literate Naturopathic dr who will search for the root cause of your symptoms, evaluate things that have not been done yet, and often understand Lyme and coinfections.

    It could be a clue also, that you feel worse on certain meds. You could be herxing on those....killing bacteria and other pathogens which release toxins when they die, creating a Herxheimer reaction.

    Here is some info for you to read and watch, that may help you:

    Great basic info and symptom list:

    Dr. Holtorf on Lyme Disease Diagnosis and Treatment - A Culmination of the Literature : LYME DISEASE - OFTEN MISSED AS A CAUSE OF CHRONIC ILLNESS:

    ILADS is the International Lyme and Associated Diseases Society that LLMD's belong to. Here is their site with lots of helpful info:

    "Lyme Disease and Bartonella: More common Than You Think" by Suzy Cohen, RPh (her husband has Lyme):

    "Long History of Pain? Think Lyme Disease":

    The new 2014 ILADS Guidelines written by LLMD's: "Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease":

    Be sure to watch this exceptional documentary on the unrecognized epidemic of Lyme Disease, called "Under Our Skin" You will be blown away:

    The sequel to "Under Our Skin" was just released. It is called "Under Our Skin 2: Emergence". The DVD is available to purchase online.

    Please don't let any Dr label you with an illness that has "no known cause". Your symptoms do have a cause (or perhaps more than one cause). A knowledgeable practitioner needs to find them, so you can recover.

    Good luck and if I can help you, please let me know. I have lots more info.

    RadioFM likes this.