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Doctor suspects fibro/cfs but i feel like there is more to this. Possible lyme?

Discussion in 'General ME/CFS Discussion' started by skyfall, Oct 3, 2014.

  1. skyfall


    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(Had tooth removed and made no difference)

    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. Eye pressure/pain/eyes feel strained

    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 have never heard fibro patients describe all the problems i have, unless i am talking to the wrong people. I know this is a lot to take in, but has anyone else had a similar experience?
    justy likes this.
  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    hi skyfall, nice to meet you. :)

    Here is how ME is described by the people who study and treat it:

    And by the patients themselves (patient input starts on page 5):

    That being said, people usually have a pretty good instinct about what's wrong with them. You should trust yourself.

    I hope you are able to get some medical help one way or the other.
    Valentijn likes this.
  3. Esther12

    Esther12 Senior Member

    Really, there's 'more to it' for almost everyone with fibro/CFS... we just don't know what it is.

    I would be cautious about getting a Lyme diagnosis unless there's good evidence that you have it - there does seem to be a problem with people being told there problems are related to Lyme when there is not good evidence that this is the case.

    Sorry not to have more useful information for you.
    WillowJ likes this.
  4. SickOfSickness

    SickOfSickness Senior Member

    Consider an IgeneX test for Lyme and Lyme co-infections.

    Also standard food allergy testing will miss many sensitivities that can cause big problems. Try eliminating some of the major allergens like dairy, eggs, peanuts. Try digestive enzymes.

    RS2 could help a few of your symptoms. Search for the popular thread with resistant starch in the title.

    Most doctors test thyroid improperly. Also thyroid can be having problems even if you show in range. has tons of info.
  5. maryb

    maryb iherb code TAK122

    I'd cut out gluten as well. But you have to be really strict on this. Its an all or nothing, not now and then, that doesn't work.

    You have many many symptoms similar to mine. I started with digestion problems, heart palps, funny chest pains etc.
    9yrs down the line I have ben diagnosed with Lyme. You may have some other sort of infection though, there are lots of these nasty critters.

    Your reaction to Metronidazole is interesting. That could be a massive herx (which I had) caused by bacteria die-off or just a reaction to the medication?? A trial of a/biotics is sometimes given to people by experienced doctors.
    I had the Met years ago, wish I'd known then what I know now about reactions to a/biotics.

    I would go to see an Infectitious Disease doctor if you can get a referral from your GP.
    If you can afford to pay privately I would go Breakspear/KdM/ BCA clinic in Augsburg, or travel to the US.

    good luck. You haven't been sick long, you have a good chance of recovery.
    Valentijn and justy like this.
  6. xchocoholic

    xchocoholic Senior Member

    You have several obvious digestive problems so I'd start there.
    In addition gall stones and reproductive problems can be related to untreated celiac disease. Check out Elizabeth Hassellbeck's story.

    A strict gf diet is the best way to determine gluten intolerance. Tests aren't reliable. Paleo is best diet for eliminating all common food sensitivities but you can be sensitive to any food. Both should be approached as a lifestyle change not a temporary weight loss diet.

    Tc .. x
  7. Martial

    Martial Senior Member

    Ventura, CA
    Well EBV can cause a lot of those symptoms alone, it does however sound like you also have a very deep yeast infection as well. Some forms of chronic infection can throw off gut disbiosis and make yeast overgrowth very common. If you wanted to see if it is lyme you are dealing with you would need an IgeneX test, there is chance that it can come back false negative if you are not producing antibodies but most of the time it will show some strands of activity. The other test is a PCR which would check your blood for the spirochetes. Aside from pharm grade antibiotics the treatments for lyme and co infection are used with wide spectrum anti microbials. This would cover you for viruses, parasites, fungus, and bacterias depending on what it is, so really it would help for a lot of compounded things that could be keeping you ill. Sometimes its important to run more thorough testing though because if you have a better idea of the specific infections or underlying disorders you can treat more specific symptoms quickly and efficiently.
  8. PDXhausted

    PDXhausted Senior Member

    NW US
    Did you ever get checked for primary biliary cirrhosis? Alot of those symptoms sound liver related. I believe the test would be for anti-mitochondrial antibodies.

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