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Does this sound like lyme?

Discussion in 'Lyme Disease and Co-Infections' started by mollyschambers, Dec 8, 2014.

  1. mollyschambers

    mollyschambers

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    Ok here is my story all:

    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.

    Constant toxic/drugged feeling in my head
    Lack of focus/ Poor memory
    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 toxic 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)
    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
    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/rib 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 reactivated Epstein Barr Virus

    I saw an LLMD who gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result. I have tested for co-infections and lyme through the labcorp western blot which was negative.

    I have a list of supplements to take and when i take them i feel worse. I am not sure which one/ones are making me feel worse, but i feel even more toxic when taking them. They include: resveratrol, coq10, fish oil, vit d, daily vitamin, magnesium malate, nattokinase, vit c, NAC, acetyl-L-carnitine, and alpha lipoic acid.

    I also have a MTHFR mutation. Results read: This patient's sample was analyzed for the MTHFR mutations C677T and A1298C. Two copies of the A1298C mutation were identified. Results for the C677T mutation were negative.Elevated homocysteine levels have not been reported when two copies of the A1298C mutation have been found.
    Other results have found me to have Low ATP levels, reactivated Epstein Barr, CD57 of 63, Recent labs came back with high reverse t3 serum (28.6), extremely high dhea-sulfate (578.8), high cortisol (22.4), high M Pneumoniae Igg Abs (232), low Alkaline Phosphatase, S, high A/G ratio, and low creatinine serum.

    I know some of this will sound foreign as a lot of it does to me, but maybe some with lyme in this group will know what some of it means. Can leaky gut and candida cause all of this? I feel like i am going to be stuck with this for the rest of my life constantly feeling toxic.
    I also have really bad pain and odd sensations in my calf muscles, legs, hands, and where my feet meets my leg. I also have pulsating sensations in these areas. I am only in my 20's, and i want to move forward but don't know how to. I am scared to go onantibiotics and waste more money on all these supplements only to not really have lyme, but how can i know without trying and seeing if it could be? Sorry this is so long!
     
  2. halcyon

    halcyon Senior Member

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    Unfortunately a lot of the symptoms you listed are just as likely in lyme disease as they are in other chronic infections, such as enterovirus or any other pathogen that is able to infect the tissues that you are experiencing symptoms in. The only way to be sure is to systematically test (using the proper testing methodologies) for all of the pathogens that could explain these symptoms. The CFS Roadmap is an excellent guide to this concept.

    The only way to know is to stop taking everything and then add things back one at a time until you start to feel bad again. Based on personal experience, I would be most suspicious of the vitamin D, fish oil, and ALA.

    Unfortunately, it sounds all too familiar. I'd say it's highly unlikely that gastrointestinal or yeast issues are the cause of all your symptoms. They are likely more of a sign that something is not right with your body.

    It's hard to say if an empirical trial of antibiotics is a good idea or not. It's very likely going to make your GI symptoms worse, at least temporarily. You'll have to trust your LLMDs judgement on that one.
     
  3. mollyschambers

    mollyschambers

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    That is a great article. I wonder how to find a doctor to test for all those viruses etc?
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    Unless you are really lucky, you might have to travel. If you look at the "doctors" section of the forum you can get an idea of how different doctors work.

    Best wishes and welcome to the forum,
    Sushi
     
    justy likes this.
  5. halcyon

    halcyon Senior Member

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    Where are you located? There are a handful of good ME/CFS literate doctors scattered around, but it can be difficult to arrange for all of the testing. I've had to go through 3 different doctors to get it all done.
     
  6. mollyschambers

    mollyschambers

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    I can imagine. I am in Texas. So all these viruses etc can cause all these symptoms just like lyme can? A lot of the lyme forums think i have it along with my LLMD, but i am still worried incase i don't.
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    Your doctor's plan to test you after some abx sounds reasonable. Some of us have taken several different types of tick-borne disease testing to try to get the best picture as no one test is completely reliable.

    I haven't heard of any specialists in ME/CFS in Texas sadly.

    Sushi
     
    justy likes this.
  8. halcyon

    halcyon Senior Member

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    I don't believe there are any well known ME/CFS doctors near there unfortunately. Not every pathogen can cause every single symptom on your list, but one of the closest I would say is enterovirus. For example, take a look at this list of some of the clinical symptoms associated with chronic enterovirus infections.
     
  9. mollyschambers

    mollyschambers

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    This is why i am so stuck in what to do. I know abx for lyme will mess my gut up more, but it could bring out a positive igenex test. If it doesn't, i am not sure whether my doctor will just continue treating or not, but it will suck if abx just leads to more issues and i don't have lyme.
     
  10. Martial

    Martial Senior Member

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    You don't have to use pharmacutical antibiotics for Lyme disease if you don't want. I was very, very sick when I started treatment and met with my LLMD that was over 7 months ago. I am now about 60 percent better and used a natural protocol of herbs and assistive supplements, among some other things. I used antibiotics at one point for all of one week before it just flat out not agreeing with me. Any complex multi system illness gets pretty complex with treatment and support to recover though.

    Just taking a ton of antibiotics to nuke out any infection alone won't work in the best way for the bulk percentage of time. They can definitely help and in some conditions save lives and cure, however tick borne disease is a bit different then say MRSA infection. The good thing about natural protocols like Dr. Lee Cowden, and Dr. Stephen Buhners stuff is that it targets multiple pathogens whether viral, parasitic, bacterial, or fungal, depending on what you used based on your own symptoms and what you respond with. Sometimes though even with a natural approach like those, antibiotics can help as an added thing to really bring down bacterial load. It is just too often over prescribed without focusing on the other issues as much.
     
    Last edited: Dec 8, 2014
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  11. Sushi

    Sushi Senior Member Albuquerque

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    The Borrelia Elispot LTT test should give a fairly accurate result without taking abx.
     
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  12. mollyschambers

    mollyschambers

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    Thank you so much for the feedback, very good info. I have looked into cowden and have wondered whether it is worth a shot. It I am not sure if it will help whatever i have going on, but i thought about trying
     
  13. Martial

    Martial Senior Member

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    It will treat things beyond just borrelia, definitely worth checking out but some people like using other methods. Me personally, I don't like taking so many alcholol tinctures and his anti microbials are way too powerful. I.e. Herx too hard while taking it. It definitely is a great protocol though and has helped very many.
     
  14. mollyschambers

    mollyschambers

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    Do you know what else it treats? I can't help but feel i will be this way forever or this will end up killing me. I have severe nerve irritation lately, and i think that is what really scares me
     
  15. Martial

    Martial Senior Member

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    Well nerve irratation is common with a lot of infectious causes, usually the biggest reason being increased inflammation of nerves through CNS infection, this itself does not mean there is high risk of mortality though just neuropathy type issues. I even had an abnormal MRI come back as a result of that. No lesions but hyper intensity of the frontal cortex of the brain and it explains a lot of my symptoms as well. There is a list of other things it also helps to treat that they have on the site. Takuna and Samento for one example being very well recorded for having a powerful anti viral effect.
     
  16. xrunner

    xrunner Senior Member

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    The article posted here may answer some your questions especially with regard to the diagnostic process.
    http://forums.phoenixrising.me/inde...-the-autoimmune-summit-great-interview.34273/
    Best wishes.
     
  17. BFG

    BFG

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    I have most of the symptoms you describe. I have run many tests and still have not found the root cause of my issues. But what i have found is impaired methylation, heavy metal burden, impaired immune system, peripheral neuropathy.

    Its funny that every specialist i see will tell me what they only know and treat. One infectious disease doc told me enterovirus with negative tests results, another methylation specialist told me mitochondriaal disease, which is very hard to diagnose, infectious disease doctor viruses, llmd possible lyme with two negative tests and one igenex panel currently pending, fibro cfs specialist heavy metals and mold.

    Lol. And im too sick and sensitive to try most of these treatments.

    If you are well enough to tolerate treatment i would try out treatments you think make sense to you. trust your body and never believe what drs say as absolute truth.
     
    justy likes this.
  18. mollyschambers

    mollyschambers

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    Can i message you BFG?
     

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