Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Lyme, multiple sclerosis or Mast Cells Disorder?

Discussion in 'General ME/CFS Discussion' started by andre79, Oct 3, 2014.

  1. andre79

    andre79 Senior Member

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    Hello,

    I am waiting for the results of my MRI to determine if i have MS. My symptoms:

    During Onset:

    Night sweats / tremors / pain all over my body / numbness and tingling in arms and hands / fasciculations / nauseas and vomiting / fatigue (extenuating) / headaches / very weird movement inside my left eye/ dilated pupils /general swollen lymph nodes / tachycardia / dizziness / anxiety / memory loss / dry skin / diarrhea / lose my ability to speak coherently / insomnia / IBS / exacerbation of allergies / candida overgrowth / hair loss / and so on...

    Two years after the symptoms than linger are:

    Stiff neck / tingling and numbness in my legs / fatigue (not so bad like during onset) / fasciculations / tachycardia / swollen lymph node in my neck / night sweats (a little bit, not so bad) / IBS / allergy to gluten and dairy / dilated pupils (not so bad) / difficult to sleep.

    I have been diagnosed with fibromyalgia but i have doubts about that diagnosis. I convinces my doctor to order a MRI to see if i have MS, the results are not in yet. I have ruled out hypothiroidism already.

    I have very few dermatological symptoms, does that rule out mast cell disorder?

    What i have is obviously an autoinmune disease even though my ANA is always negative... So, what is it then?

    I had an elisa test for lyme and it was negative. Also, my exposition to lyme is almost zero, because in my country there 's not lyme. But i have travelled a lot around the world. I don't remember being bitten by a tick.

    Thank you for your help...
     
    Jammy88 likes this.
  2. maryb

    maryb iherb code TAK122

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    I don't ever remember being bitten by a tick but have a Lyme diagnosis. I had an Elisa test came back negative. A western blot was positive.
     
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  3. Hanna

    Hanna Senior Member

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    You don't need to be bitten directly by a tick to get Lyme. An infected carrier like moskitoe or spider for example may do also the trick.
     
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  4. Soundthealarm21

    Soundthealarm21 Senior Member

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    Have you ever checked for mold/mycotoxins?
     
    andre79 likes this.
  5. Abha

    Abha Abha

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    Hi Andre79,

    Have you considered Rickettsia infection? I don't have Lyme but I do have rickettsial infection.I think the outcome is similar.You can read up on it on the web.Dr Cecile Jadin in Johannesburg is an expert on this(see web).
     
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  6. andre79

    andre79 Senior Member

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    I don't think i have, even though i have lots of tests done. I do remember one test mycoplasma IGM which was negative.

    What test should i perform to determine is it is mycotoxicosis?

    Thank you!
     
  7. andre79

    andre79 Senior Member

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    I have never test for Rickettsia. I am going to find out if there's such a test in my country. What about your symptoms? Are they similar to mine? Are you following any treatment? Are you better?

    Thank you!
     
  8. Soundthealarm21

    Soundthealarm21 Senior Member

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    Get a doctor to order a mycotoxin test from Real Time Labs

    http://www.realtimelab.com/

    Also check out the Threads in Addressing Biotoxin, Chemical & Food Sensitivities for more information
     
    SickOfSickness likes this.
  9. andre79

    andre79 Senior Member

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    I have just received the results of the MRI. All clear. Shocking for me really, but relieved at the same time.

    Is that enough to rule out MS?

    The only find is an enlarged lymph node in my neck. What could that be?
     
  10. duncan

    duncan Senior Member

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    I would recommend anyone sporting symptoms such as those you've listed to be checked for tick-borne diseases. You say there is no Lyme in your country. Are there ticks?

    It may well be you have no TBD's, but in today's rapidly evolving ecosystem, that's an item I'd want to be confidant about when I eliminated it from my list of suspects.
     
  11. andre79

    andre79 Senior Member

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    @duncan thank you for your reply. Yes, there are ticks in my country, but there are not known cases of lyme, that i know of.

    But your post made me think. Casually today i was speaking with my mom, she works in a shelter and animal foundation that picks dogs from the streets, that usually are very sick. They cure the dogs and give them in adoption. Anyway, my mom commented that one of the collaborators got babesia, and she was treated and recovered.

    So, i guess there are tick diseases in my country after all. The problem is that i already did a lyme test, and it was negative. And here we don't have acces to the more sophisticated tests. As i told you, doctors here don't even know lyme exist. Which is very frustrating and if i want help i will have to get it abroad.
     
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  12. Jammy88

    Jammy88 Senior Member

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    @andre79 your symptoms are identical to mine ! Did you have an infectious episode prior to their start?

    Really looks like the same disease. I'm pretty shocked. *__* Have you checked gamma globulin levels ?
     
  13. andre79

    andre79 Senior Member

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    @Jammy88 i haven't checked my inmunoglobulins. You see, at the beginning of my illness i had a very hard time convincing doctors that i had those symptoms. Yes, it's true, they wouldn't believe me and 29 out of 30 doctors that i saw told me it was stress. Really! Just one doctor told me it was fibromyalgia. So, i lost a long and precious time going from doctor to doctor and finally i realized that if i wanted to get better i would have to do it by myself.

    Anyway, here i am still looking for answers but much better than before.
     
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  14. Jammy88

    Jammy88 Senior Member

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    Hi @andre79 , I see. I'm very sorry about that.

    Well, I'm not a doctor but I would suggest to check immunoglobulins and see whether there are some alterations in IgG (you might ask for an electrophoresis).

    Best wishes and keep fighting
     
  15. Valentijn

    Valentijn The Diabolic Logic

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    Which country are you in, @andre79 ?
     

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