The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Anyone sickness start like this?

Discussion in 'General Symptoms' started by sick2long, Dec 7, 2014.

  1. sick2long

    sick2long

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    Woke up October 1992 extremely dizzy nausea vomiting with a low grade fever in bed all day.
    Felt like I was getting better then everything went downhill.
    Would awaken every morning 5am like an internal clock went off.
    Extreme weakness and malaise with very little appetite.
    By 12 noon symptoms start to get slightly better
    Every morning driving myself barely to ER where they did blood hydrated me, stool samples and released.
    Finally no appetite at all and losing weight quickly
    First endoscopy showed some inflammation stomach
    By December hospitalized
    I had a thick coating on my tongue that I would have to scrape off what I now know was candida.
    Nuclear scan bowel shows inflammation terminal ileum(end of small intestine)
    Colonoscopy shows sever inflammation in entire colon and huge amount of inflammation at terminal ileum and ileocecal valve.
    Dr. Diagnoses me with Chrohn's disease and puts me on heavy iv steroids.
    Neurological symptoms now get 1000X worse
    Arms and legs jerk uncontrollably(myoclonus) muscles twitching in my face, legs, arms and even stomach muscles-yet all electrolytes in blood normal
    Dr. thinks I have ALS
    After one month in hospital with no improvement they tell my wife it is some type of rare cancer and I am not going to make it.
    Checked myself out barely being able to walk and went home got hospital bed in dining room.
    Lyme disease Dr. heard about me somehow and went to his office.
    He noticed muscle twitching and pallor and especially fungus on my tongue.
    He said I was too sick to start antibiotic treatment.
    A miracle happened!!! He gave me a drug diflucan and within 2 days I was out of bed and finally walking and appetite returning. That damn fungus was making me very sick.
    After massive amounts of iv, Intramuscular injections and oral antibiotics I still did not feel any better. I actually felt worse on antibiotics. Not typical herxheimers. Just sick. Finally gave up and have not tested positive for lyme in years. Initial tests were sometimes positive, sometimes negative and sometimes equivocal. Not sure if I ever had lyme disease at all
    Fast forward now 22 years later. Still sick. From what I have been able to read now I could have possibly had an enterovirus attacking me.
    I had drank from a contaminated water source shortly before getting sick. You know one of those roadside wells in the mountains.
    I contacted the town and they tested and condemned the well. It was extremely high in choliform and highly polluted water. They sent me a letter of apology.
    I now have what looks like just about every symptom associated with me/cfs. My last blood showed a natural killer cell function of 2.
    I still to this day on recent biopsy of the stomach show inflammation in various regions. With the night sweats I get and low grade fevers on and off I feel I still have some strange virus attacking me.
    I have started antivirals now and am hoping over time to get some relief. Will keep you posted if any improvement.
    If any of you have heavy yeast on tongue and can't eat sugars without feeling a lot worse I suggest you talk to your Dr. about antifungals because to this day that is the only drug that made a difference in my overall condition.
    Keep you posted of any improvement on antivirals.
    Thanks,
    Sick2long
     
    justy likes this.
  2. Daffodil

    Daffodil Senior Member

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    Hi sick2long. Sounds like you indeed have CFS. Many things can trigger it, including enterovirus. I think. Are you on treatment for enterovirus (oxymatrine etc?) Have you seen Dr .Chia or any CFS/ME specialist?

    I don't think anyone is sure exactly what is causing our immune systems to be compromised: some say its infection, some say autoimmune process, some say both.

    By the way, I think LTT ELISPOT for Borrelia is the only good test for Lyme...

    xox
     
  3. halcyon

    halcyon Senior Member

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    Your onset and findings, especially inflammation in the terminal ileum, are very consistent with enterovirus. It's very possible that you are still infected with the same virus, these types of infections can persist for years and years.

    If you live in the US you can have those recent stomach biopsy samples sent to EVMED Research and they will test for the presence of enterovirus.

    What antivirals are you taking presently?
     
  4. sick2long

    sick2long

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    HI. Thanks. I have had spinal fluid and blood tested not too long ago at Igenx of California. My nephew had all symptoms of lyme infection and had a local lab do the test and it showed negative. Meanwhile he was running 102 and was asked to be carried out of the store by his mom. I had her send her blood to Igenx and it came back 100% positive. 4 weeks of doxycycline and he has been normal for ten years. I am more and more beginning the question of lyme.
     
    taniaaust1 likes this.
  5. Kenshin

    Kenshin

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    Hi, just wondering how cfs can be "triggered" by an enterovirus?
    From my understanding M.E is itself an enterovirus (which could infect people through water?)
    Cheers.
     
  6. sick2long

    sick2long

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    Thanks, new to this forum or any forum for that matter. Good to talk to people when you have lost so much of your life to a mystery illness. I am on equilbrant only half pill a day for 5 days now with no side affects. Will up the dose maybe tomorrow. Just treating myself from Dr. Chai's information and interviews I have viewed on the net.
    What is strange is in my recent bloods it shows High IGG to mycoplasma pneumonia and chlamydia pneumonia.
    From what I understand high IGM is present in recent infection and in possible chronic infection just high IGG is present. When I first got ill in addition to all the other symptoms there was and still is a definite wheezing in my lungs with a poor spirometry result. I have had too many stomach and colon biopsies to count. They even opened me up to see if I had Chrohn's or infected gallbladder. Thats another issue. My hida scan consistently shows 15% function instead of the normal 43 or 50% normal function. I still don't think that has anything to do with all the neurological and joint pain symptoms I am experiencing. I will post in future how this antiviral works for me. I would love to see Dr. Chai in California but having no job and wife just working part time that is an impossibility. There is such a sense of guilt not being able to provide for your family.
    Thanks
     
    justy likes this.
  7. sick2long

    sick2long

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    Yes enterovirus is found in contaminated water. Humans are the hosts for this disease and it is found in polluted water with human contamination. I am not sure if animals carry it also. I had read somewhere on the net that there were clusters of this disease traced back to some polluted lakes where people ingested the water. I am beginning to feel I have had this enterovirus for years which somehow has attacked my central nervous system, my heart, lungs blood vessels and joints. I run low grade fevers and wake up many nights with my pillow soaked from one side to the other.
    I hope this antiviral I am taking eventually kicks in and starts my immune system working properly again. I don't have aids and yet my blood tests
    shows my immune system is not working right. Thanks
     
    Kenshin likes this.
  8. Daffodil

    Daffodil Senior Member

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    hi sick2. Igenex does not do the LTT ELISPOT. It is done only at Infectolabs in Germany, as far as I know. This is the test you must have.

    You can ask for a kit and send your blood there, or go to an LLMD...I am sure many of them send for this test.

    CFS is not entervorus. No one knows what it is.

    xox
     
  9. Daffodil

    Daffodil Senior Member

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    Many infections can trigger autoimmunity...take Chlamydia and Reiter's syndrome, for example.

    I don't know much about this, but I am not sure anyone knows exactly what autoimmunity even is.
     
    Kenshin likes this.
  10. sick2long

    sick2long

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    Thanks for the info. However me/cfs may be triggered by an enterovirus. The clinical trials at Stanford University show promising results for patients being treated with antiviral meds. Dr. Chai's research has found 80% of cfs patients that had their stomachs biopsied had dna/rna for enterovirus. I am not saying it is the only cause of it but something triggers it.
     
    halcyon likes this.
  11. sick2long

    sick2long

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    If I get another biopsy I will have samples sent there. Thanks.
     
  12. halcyon

    halcyon Senior Member

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    It's possible that the pathology lab that handled your samples still has them, they are not normally disposed of. It might be worth asking about. Not that it will change the treatment approach you are taking, but it can be useful if you desire documentation of the infection.
     
  13. sick2long

    sick2long

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    Thanks I did not know that. I will call them and see if they still have biopsies.
     

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