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Does this sound like lyme?

Posted , 10 users are following.

emzie89
emzie89

Well I would like to say i haven't actually been diagnosed with lyme, although i really do think my Dr is leaning towards it.

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:

Thyroid-Fine

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

Symptoms

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

Heartburn

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. Cancer runs in my family, and this worries me so much also with these weird sensations. I even worry about ALS. Needless to say, whatever illness i have makes me very anxious, and i never had anxiety problems before it all started.

I see my Dr in 2 weeks to discuss results, although they called me yesterday to tell me my ANA and RA tests were negative, my cd57 was 64, and my ATP was 19. I am not really sure what any of this means, but i guess we will discuss next time. Anyone have an idea? I spend most of my days just crying, praying that i don't die, because i honestly feel like i am dying.

Sorry this post is so long, i just had to include everything.

1 like, 18 replies

18 Replies

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  • david59662
    david59662 emzie89

    Posted

    Reading that i connected with lots of it 10 months into my post viral fatigue diagnosis. Especially the the part feeling like dying. I've called an ambulance twice because of this feeling, i am 34 this time last year i was a triathlete!!! I'm now largely housebound. I also have had low end neutrophils. Were you platelets low end also ? I have also been teted for lyme with ELISA and Western Blot, both negative, so not sure what i can do with regards to further lyme testing. I guess doing a course of doxicycline would be the only way to know as you should get better.

    I think it's likely you have 'chronic fatigue syndrome' or 'PVF' like me rather than lyme. My body used to be vital and strong now it feels so weak and pathetic, my heart feels like it is barely beating and sleeping at night is difficult because of it.

    • delphine86543
      delphine86543 david59662

      Posted

      Hello sweetheart , I have chronic Lyme and the only thing that helps is 400 mg of doxy for 8 weeks . Give it a go and c how you feel xxx
  • delphine86543
    delphine86543 emzie89

    Posted

    YES you have Lyme disease , I suffered from all your symptoms and much more but won't say as every one suffers differently and wouldn't want to scare you . Do you remember being bitten or having a severe flu from hell where everything hurts , swollen lymph nodes , high temp and stiff neck ?? I have been fighting with my doctor for the past 4 years and I'm just been refered to a infectious specialist and awaiting blood results for co -infections ! My 1st Lyme test was positive after I got taken into hospital as I lost the use of my right leg over night but since then they have been negatives but ticks can carry co infections as well which u need to be tested for 
    • emzie89
      emzie89 delphine86543

      Posted

      No i never had flu symptoms, a rash or a bite. No high temp, but my neck is achy. 
  • delphine86543
    delphine86543 emzie89

    Posted

    As Lyme can b negative but it doesn't mean you don't have Lyme and by right they should diagnose you by your clin
  • delphine86543
    delphine86543 emzie89

    Posted

    Clinical symptoms and not just the bloods . Keep on top of them and don't let them fob you off babe . I'm in the uk and the nhs doesn't recognised it as it would ruined them but u know that your not healthy and u must fight or their answer is to leave you rot at home like they did me. I see every consultant at the hospital as I have skin, neurological issues , organs , eyes , joints and muscular severe pains . They believe I have chronic Lyme a currently on morphine , tramulief ( tramadol ) naproxen , citalopram and zopiclone as I have severe insomnia or extreme cfs 😩 it's no fun but don't give up. Inbox me u need more info I will b happy to help 💚 
  • cheetahjade
    cheetahjade emzie89

    Posted

    It certainly sounds like it. It is one of those diseases that's hard to diagnose and just as hard to treat and get over.

    I was clincally diagnosed with Lyme. My test came back negative, but statistics show anywhere from 50% or more tests come back as false negatives. As I understand it, you feel terrible because your immune system is comprimised and not able to fight the disease. Because it's not fighting the disease it's not creating creating antibodies. Since that's what they check for in most testing, no antibodies usually means negative. But that doesn't mean you don't have it. 

    Try and locate a Lyme literate doctor, someone who understands the disease and how to test it. A majority of your symptoms sounds like Lyme, especially the tingling, was and still is a major issue for me. It sounds like you may have confections as well. If you have this many symptoms and everything else came back normal or negative then they tend think you have Lyme. 

    You are not crazy and you are not dying. Anyone whose had Lyme had felt that way. Once you start your treatments, you will get better.

    • david59662
      david59662 cheetahjade

      Posted

      Hi Jade,

      I am 10months into being unwell. Prior to Nov2014 i was a very fit and active 34 year old. I was initially diagnosed with post viral fatigue now i have the CFS diagnosis. I wanted to ask i recall in the beginning of my illness i fely utterly horrific, i called an ambulance for the first time in my life as i thought this is it, going to die. I am just curious if people with lyme have felt this way. I've felt this way more than once. I had lsevere viral like symptoms Nov but since April things are nowhere near as bad as that and i am left with fatigue and generally feeling like a zombie, literally, from the inside as if my heart is dead. Do people with lyme have an onset which is terrible then there is a partial recovery of sorts ? I have had the standard tests for lyme negative and also private tests for babesia, bartonella and ricketssia also negative.

      Thanks

    • cheetahjade
      cheetahjade david59662

      Posted

      I'm not a doctor, but I would assume you do have it. Lyme symptoms are notorious for being all over the place. Most of us test negative for everything including Lyme before we get treatment. I also had my first ER and ambulance trip a few months ago when I started feeling terrible. That zombie like feeling sounds like brain fog and depression. Both very common for Lyme and coinfections. There are times when you feel okay and a couple of days later the symptoms come back, sometimes worse. 

      http://www.healingwell.com/community/default.aspx?f=30&m=1606610

      This link might help. It gives a lot of information if you think you have lyme and what to do. My recommendation would be to try and locate a Lyme Literate Doctor. They are usually well versed and understand they signs and symptoms better than your regular doctor. The link can help with that too. 

      Also if you can, try and watch the documentary "Under our Skin." It's about Lyme being discovered, the political drama behind it and watch Lyme patients go through before, during and after treatment. Very eye opening and you might see some similarities. 

      I hope you find the help you need soon. 

    • cheetahjade
      cheetahjade david59662

      Posted

      For some reason my last reply is being moderated.  I think your symptoms do sound like Kyme, but I'm not a doctor. I think you should try and find a lyme literate doctor in your area. They would have a better understanding of symptoms and signs of Lyme. Keep in mind, 50-60% of lyme tests are false negatives. Good luck. Hopefully my last reply will make it through 
  • tay80455
    tay80455 emzie89

    Posted

    Emzie,

    I have these same symtoms.

    We live in an old house and I'm thinking it could be an indoor allergen.

    I have also read these symtoms could be related to past sexually transmitted diseases.

    Can you describe to me your living environments. I would like to figure this out.

    • tay80455
      tay80455 miked1964

      Posted

      I called and they are 850.00

      So we're saving up for one.

    • miked1964
      miked1964 tay80455

      Posted

      There is a place in New Jersey that sells them for half of that. It's called Mycometrics.
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