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Is it a new disease or its CFS ?

Discussion in 'Immunological' started by Omar88, Aug 26, 2012.

  1. ravikumarsu

    ravikumarsu

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    I am able to lead normal life. My joint pain almost resolved (80%). Now I have severe nerve damage related issues. My neurologist put me into Gabapentin tablet for 6 months. My kidney pains often and lymph nodes too.Do you have crepitus?
    Han did not mention anybody got joint damage, that means less chance/no chance

    This decease different from Lyme decease. But if possible please test for that also
    How is it used?


    Lyme disease tests are used to determine if a person with characteristic symptoms has been infected by Borrelia burgdorferi. If the doctor suspects a recent infection, then she may order both an IgM and IgG antibody blood test. If they are negative but symptoms persist, then the tests may be ordered again a few weeks later.
    Acute and convalescent samples may be used to track progression of the disease by looking for changes in the amount of antibody present. If the tests are positive, then a Western blot test is ordered to confirm the findings.
    Lyme disease can sometimes be challenging to diagnose. If a person has removed a tick from his skin, had a known tick bite, and lives in or has visited an area of the country where Lyme disease is most prevalent, then the timing of the potential infection can be closely estimated. However, the tick is about the size of the head of a pin and the bite may not be noticed. Not everyone will develop the characteristic rash, and the symptoms that a person does have may be nonspecific and flu-like in the early stages, with joint pain that develops into chronic arthritis and/or with neurological symptoms that appear months later.
    A blood test for antibodies to the bacterium is the preferred test for the diagnosis of Lyme disease. However, if a person has central nervous system symptoms, such as meningitis, then IgM, IgG, and Western blot testing may sometimes be performed on CSF.
    Occasionally, PCR (polymerase chain reaction) testing is performed on a sample because it is a more sensitive way of detecting an infection with B. burgdorferi. This method is useful in detecting the infection in samples such as fluid collected from a joint. It looks for the genetic material (DNA) of B. burgdorferi in the joint fluid (synovial fluid).
    Very rarely, a sample, such as a skin biopsy, may be cultured to grow the bacterium.

    ^ Back to top
    When is it ordered?


    Lyme disease testing is ordered when a person has symptoms suggestive of an infection with B. burgdorferi and lives in or has visited a region where deer ticks or black legged ticks are common, especially when the person has recently been bitten by a tick.
    Some symptoms of Lyme disease may include:
    • A characteristic "bulls-eye" rash that spreads from the site of the bite
    • Fever, chills
    • Headache
    • Fatigue
    If left untreated, Lyme disease may progress to cause:
    • Intermittent jointpain
    • Meningitis
    • Facial paralysis (Bell's palsy)
    • Weakness and numbness in the arms and legs
    • Memory problems
    • Less commonly, heart problems such as irregular heartbeat and eye inflammation
    IgM and IgG tests are ordered first. Western blot testing is ordered as a follow-up test when the first tests are positive or indeterminate. Acute and convalescent samples may be ordered several weeks apart to look for changes in antibody levels.
    When someone does not have typical symptoms or a history of a tick bite and has not been in a region where Lyme disease is prevalent, then the doctor may rule out other causes for the person's symptoms before suspecting and testing for Lyme disease.

    ^ Back to top
    What does the test result mean?


    A healthy adult who has never been exposed to the B. burgdorferi bacterium will not have any antibodies.
    If a person's IgM, IgG, and Western blot tests are positive, then it is likely that the person has Lyme disease. If the person's antibody concentrations rise over time, then it is likely that the person has an active B. burgdorferi infection.
    If someone tests positive for only the IgM antibody, then the person may have a very recent infection or a false positive test result.
    If an IgM result is not detectable but the IgG and Western blot tests are positive, then it is likely that the person tested either has a later stage infection or had an infection at some time in the past.
    If all tests are negative, then either the person's symptoms are due to another cause or the antibody levels are too low to detect at that time; retesting a few weeks later may be needed to confirm or rule out infection.
    The following table summarizes results that may be seen with Lyme disease antibody tests.
    IgM antibody IgG antibody Western blot Likely Interpretation
    Positive Positive Positive Likely Lyme disease
    Positive Negative Negative Early infection or false positive
    Negative Positive Positive Late or previous infection
    Negative Negative (usually not performed if IgM and IgG are negative) No infection present; symptoms may be due to another cause or antibody levels too low to detect
    If PCR testing is performed and the result is positive, then it indicates a recent infection with B. burgdorferi. If the PCR test result is negative, then no infection is present or the levels of DNA are too low to detect.

    ^ Back to top
    Is there anything else I should know?


    Once a person has had Lyme disease, he will typically have detectable amounts of B. burgdorferi IgG antibodies in his blood for the rest of his life.
    Borrelia burgdorferi belongs to a class of bacteria called spirochetes. Other spirochete diseases, such as syphilis and leptospirosis, can cause false-positive results, as can other conditions such as HIV infection, mononucleosis, and a variety of autoimmune disorders.
     
  2. ronR

    ronR

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    what do u mean by nerve damage ?? what symptoms of nerve damage do u have ??
    kidney pain is there for me too......do u have swollen lymph nodes or just pain ??

    look i dont think its lyme....coz it get spread to ur family without blood ,by saliva or may be by sneezing too......soit is different ........it must be some ebv like aggresive herpes or mycrobacterium .

    only a testing of the blood by a research institute can determine
     
  3. Omar88

    Omar88 Senior Member

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    Good information that was in my mind ! I had this bad idea of infecting some one else and take them immediately to a big hospital that already knew i have something strange and knows about hundred of tests i had so they could exclude it, but i couldn't !

    I will try to get entrance to big hospital, am sure they don't have next generation testing but what they have is good, there is a percentage they might find something specially in Lymph nodes or other tissue biopsies ! if not we will see what we could do !

    Its so strange the big number of us with no answers, same ideas from different doctors in different countries saying its unknown virus and it might go away and maybe not ! like its not their Fu**ing duty to know what is it exactly ?!

    We need to share information by now of what best opinions we are having from the big hospitals in our areas and see what can we do and what could hep us with our symptoms for now at least !!

    If that didnt work good we will should raise some money and am talking about couple of thousands so 1 or 2 of us could do more tests out side and try the next step with good a doctor and i have couple doctors in my head ,,,

    "Am sorry for being late i was 500 KM far of home seeing a new doctor and as always 2-3 more tests are ordered and some tissue samples that am waiting the big hospital entrance to do it in it"
     
  4. Omar88

    Omar88 Senior Member

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    I was doing great except in the last to months every thing went bad again i have so many symptoms right now while i thought this will be end soon ! we dont know how is it and how does it work but the only thing we could do is boosting the immune system right now !!

    Its not Lyme disease cause lyme takes a while for the symptoms to appear at least two weeks, while most of us had symptoms after couples of days, and a lot of us tried a lot of antibiotics within the first month so if it was Lyme it should be killed with the big doses i took ! but any one of us could test for it if they think they could be infected from it within the same time of their illness.
     
  5. Hip

    Hip Senior Member

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    With the virus I caught that also went around my friends and family, there were a few reports of cats becoming sick at around the same time as their owners caught the virus, and I thought it might be due to the same virus. Enteroviruses, which is the type of virus I believe I caught, are known to jump species quite easily. Thus an idea I had was to get a lab rat, and infect it with the same virus by putting your saliva on its food every day, until it comes down with the infection. (My virus seems to be ever present in my saliva, as I have transmitted this virus to others by kissing and just by ordinary social contract).

    Then in the acute phase of the infection in the rat, you take a blood sample from your rat and get it analyzed. A blood sample is best taken say 4 days after its infection commences, to make sure there are antibodies present — it usually take a few days of infection before the immune system starts making antibodies. Viral infections can be identified by antibody tests, by PCR or by viral culture. For enteroviruses, after around 10 days of infection, you no longer find substantial amounts of antibodies in the blood (only very low levels of antibodies), so there is a small time window of a few days in the acute infection when substantial amounts of antibodies are present. Once the chronic enterovirus infection begins (at around the 10 day point), antibody levels thereafter remain very low.

    After your testing, you keep the rat, as they are cute, loveble and intelligent creatures that make great pets!
     
  6. 8eraser8

    8eraser8

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  7. ronR

    ronR

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    India / singapore
     
  8. ronR

    ronR

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    DEAR HIP, WHEN YOU SAID THIS PATHOGEN PASS TO YOUR FRIENDS & FAMILY ,HAVE YOU NOTICED THAT THEY DONT GET AS SEVERE SYMPTOMS AS THE MAIN PATIENTS GETS....THIS MAKES ME DOUBT THAT ITS A VIRUS,COZ VIRUS REPLICATE/MULTIPLY. I BELEIVE ITS SOME KIND OF CO-FACTOR OF HIV,WHICH IS YET TO BE DISCOVERED,WHICH LOWERS THE CD4,MAKES U EAISY TARGET FOR CMV/EBV/MYCROBACTERIUM.

    NOW,WHAT CAN WE DO??
    IF GOOGLE SEARCH.....WE WILL SEE LOTS OF PEOPLE LIKE US.
    ATLEAST 100 OF US FROM DIFFERENT FORUM CAN COMETOGETHER & CAN WRITE/PETETION .... TO GET MEDICAL HELP FROM WHO/OTHER INTERNATIONAL BODY TO FIND OUT THE CAUSE.
    WELL I AM QUITE SURE ,THIS IS NOT ME/CF ,COZ THEY DONT SPREAD IT SO EASILY TO OTHERS.
    YEARS/DECADE FROM NOW,THIS NEW PATHOGEN,MIGHT GET DETTECTED....SO WHAT WE ARE DOCUMENTING HERE IN THESE FORUMS,CAN BE HISTORIC...........IF ONLY WE ACT FAST,AND HELP THEM IN DETECTING IT.
     
    merylg likes this.
  9. Omar88

    Omar88 Senior Member

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    1) Lots make it easier ,, yes i have some of the symptoms you me mentioned and no my symptoms are not bad as the same when it started but they are bad.

    2) Please never come here again and start saying that i might have those symptoms before and i never felt of them, talk to me of what i can understand, I was healthy as an athletic and more and am here now, i know what happened , when and how but i dont know the cause and am fighting for that !!
     
  10. 8eraser8

    8eraser8

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    Dear Omar,
    Whats really the prob for me, is the skin rashes and the waist fat gain, and also my lymph nodes, I am really worried about it, I am really unable to get any answer, are u also suffering from multiple skin rashes and waist fat gain?

    Any treatment working for u?

    thanks
     
  11. Omar88

    Omar88 Senior Member

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    Yes i do have skin rashes on my chest and behind my ears some times it does appear in other areas when i feel worse , lymph node didnt leave for a day since my illness started too
     
  12. Hip

    Hip Senior Member

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    Hi ronR. Yes there is a great difference in symptom severity between one person and the next when they catch my virus (I have described my virus here).

    However, it is quite normal for the same virus to cause severe disease one person, and mild disease, or even no disease (asymptomatic) in another person. This is the character of viruses and other micro-organisms.

    For example, poliovirus is usually asymptomatic in most children that caught this virus, but a very small number (< 1%) of children would become paralyzed by poliovirus, and could even die if not hospitalized. So poliovirus has a large range of possible effects, from completely asymptomatic to death — depending who catches it.

    Similarly, when you catch Epstein-Barr virus, this can be completely asymptomatic, so you don't even know you caught it, or you can get mononucleosis, which leaves you pretty ill for a month, or even worse, some people get a CFS-like disease from Epstein-Barr virus, that can last 6 months or more.

    All viruses have a great variation in their effects, depending who catches them.

    You might want to do a bit of background reading into virology and microbiology. The following websites/blogs are very good for learning more about this stuff:

    Emerging Infectious Diseases journal - CDC
    CDC - Morbidity and Mortality Weekly Report (MMWR)
    Infectious Diseases News & Bacteria News & Viruses News from Medical News Today
    MicrobiologyBytes » The latest news about microbiology
    virology blog — About viruses and viral disease
    Biosingularity


    Can you please use lowercase letters if possible, ronR. I find uppercase hard to read, as my eyesight is often a little blurry.
     
  13. Hip

    Hip Senior Member

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    For all those who think they might have the Chinese "HIV-like" virus, here is some good news:

    I just received a very brief email from Hanchuchu, updating me on his condition. He said that he is recovering and feeling better. He says that he thinks the immune system may be able to clear the virus as the time goes by.

    I believe Hanchuchu caught the Chinese "HIV-like" virus in late 2009 (judging by the date of his first post on this website), and, as we are now in late 2012, this suggests that it takes 3 years before those with this Chinese "HIV-like" disease start to see substantial improvements in their health (assuming Hanchuchu's story is the typical of the way this disease progresses).

    In fact, Hanchuchu told me that he first began to improve in late 2011 — around 2 years after first catching the virus. It was the mental symptoms that improved at the 2 year point, he said.

    So for people with the Chinese "HIV-like" virus, it may be that you will automatically begin on the road to recovery after 2 years with the Chinese "HIV-like" virus, and be substantially better by 3 years. Perhaps after 4 year years, you will be almost back to normal.

    (Of course, if you have caught a different virus to the Chinese virus, and developed ME/CFS, then it may be more difficult to get improvements, as only around 1 in 20 people with ME/CFS get full, permanent remission, I believe.)

    So, even if the first two years with the Chinese "HIV-like" virus are a constant living hell, the general prognosis for this Chinese "HIV-like" disease looks hopeful and good (assuming Hanchuchu's case is representative of the normal course of this disease).
     
    allyb, ronR and Omar88 like this.
  14. Omar88

    Omar88 Senior Member

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    Thanks Dear HIP this is great news and i heard that most people get better after two years and i wish we could be of them !!

    Could you ask him about supplements and such stuff he was taking ? if he could provide a list that would be great ,,

    And if you could bring him here to answer some questions please do it we need that help

    Thanks again
     
  15. Hip

    Hip Senior Member

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    Hi Omar

    I already asked him to come back to this forum, but unfortunately I think he is busy.

    The two main treatments that Han said helped him a bit were:

    (1) A Tibetan herbal formula called 仁青常觉 (also called 珊瑚七十丸 and also 珍珠七十丸 ) — sorry I don't know the English name (I don't think there is one). The ingredients of this Tibetan herbal formula are: periwinkle, saffron, sandalwood, bear bile, musk, bezoar, dendrobium (a type of orchid), rhinoceros horn. Several ingredients like bear bile and rhinoceros horn are ethically dubious.

    I personally found saffron and vinpocetine (an extract from periwinkle) quite helpful at treating my depression and anhedonia symptoms.

    (2) A meditation called 胎息 involving very slow shallow breathing. Search for 因是子静坐养生法 on Google for more info about the meditation.
     
  16. taniaaust1

    taniaaust1

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    I think one needs to look at many patient stories who seem to have that before drawing a probably conclusion that most with it will start improving afterseveral years... one persons experience isnt enough to draw any likely time recovery conclusions from.

    One thing which interests me about the chinese virus is just how badly their emotional states get affected from it... the paranoia of having the virus, the extreme death fear etc. I think the normal ME/CFS virus (whatever that is) can cause psych affects too but as a patient group it seems to hit less strongly in that area. (maybe the stronger emotional affect is another way.. to help tell what may be two different virus's apart?? Maybe the chinese virus replicates stronger in the brain or something??.

    :( I hope that others dont try to get that same med as its soo cruel on those animals.. the rinos are left to slowly bleed to death after having their horns cut out of their heads (often taking big parts of their face with it as its hacked out). The bears keep for their bile.. suffer immensely with much shorted lives. The WWF has been doing a huge campaign to try to stop the practices.

    There is thou some things in bear bile which are apparently useful for somethings (more then just a psychological effect) hence bear bile has been synthesized (I hope Im using the right word).. is now being made artifically so people can get its benefits without causing terrible distress to the bears. Anything thou which dont say it is not real bear bile..could probably be real bear bile.
     
  17. Hip

    Hip Senior Member

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    You are right, taniaaust. Though Hanchuchu's recovery story does give people hope, as those who believe they may have the Chinese "HIV-like" virus often think that they will go downhill forever. Hanchuchu's story indicates you can get better, and can do so without any specific medication.

    I had these severe psychological symptoms from the virus I caught. These were hellish constant symptoms of: super-extreme anxiety (bordering on psychosis some days), severe anhedonia, complete emotional flatness, and constant suicidal ideation. This went on for several years. (A few other people who caught the same virus from me also got these hellish mental symptoms.) These hellish symptoms were far more difficult to cope with that the usual ME/CFS mental symptoms of: brain fog, memory problems and sound, light or odor sensitivity (though I have these ME/CFS symptoms too, even now, as my ME/CFS continues).

    Agreed. If you want to try this Tibetan formula, it may be better to buy the ethical ingredients only and make up the formula yourself. Or just buy what I reckon are the most important two ingredients: vinpocetine and saffron. Only buy Spanish or Iranian saffron; Egyptian saffron won't work.

    BUT I STRONGLY RECOMMEND that everyone here who thinks they may have the Chinese "HIV-like" virus to try the treatments listed on my site HERE. These listed treatments are the ones that cured my super-extreme anxiety, cured my anxiety psychosis symptoms, improved my anhedonia and depression symptoms, and improved my emotional flatness symptoms. In short, these treatments made life bearable again.

    I am not sure whether I have the Chinese "HIV-like" virus or not. But if I do have this virus, then clearly the drugs and supplements listed on my website are excellent treatments for this Chinese disease.
     
    taniaaust1 likes this.
  18. Edward

    Edward

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    Hello to everyone,
    I have experience with the starange new disease since 2006. After 4 years (around 2010) I became to feel much better. Now, two months ago the more less similar symptoms came back, what is more my girlfriend started to have similar symptoms can't recover since 2 months.

    This is what I wrote at the other plot in this forum:


    What you wrote about Hanchuchu is what I have said in my previous post. I know your forum, we shared emails few years ago (I dont remember I wrote to you as madday or edward). Then I have stopped as I have started to feel much better, and even believed I got rid of the shit from my body or that I really had some mental problems which developed sweats, sore throat, candida albicans on tongue, low degree fevers lasting for a few years, weaknes etc.

    I don't know if I have or not the fucking "chinese virus". The truth is that I had (and have again) almost ALL of the symptoms people with it describes. I have met at least 3 other people in Poland who developed very similar symptoms after sexual relation, tested all possible with no diagnosis all of them started to feel better after some time in one case the symptoms get back.

    Hanchuchu is recovered - I am really very happy!!!

    It is my case, after sth like 4 years I have recovered too - not completely but I could live quite normally. Then I had 2,5 fantastic years, I didn't feel like before the illness but much much better, last year I could make myself to jogging and to do some excercise. 2,5 years ago I have met great girl we had unprotected sex. And now (2 months ago) it is back so it means my body didn't get rid of the virus it was kind of latent state. What is more after 2,5 years of unprotected sex now with my symptoms my girfriend has developed also some strange symptoms like: night sweats, permanent cough, sore throat, she lost smell etc.

    And since I got it I was kissing few girls (had no unprotected sex) and did not passed it to anybody else. In my case I am pretty sure it spreads more less like HIV virus.

    I am really scared about myself and my girlfriend as she can't recover since two months, pretty sure I have passed the fucking strange disease to her!
    Of course it is only my fault but I just wanted to live normal life, wanted to believe into the science, tests and all of the doctors and specialists I have visited. I just wanted to be a normal happy guy who has something precious to offer to the loved one! It occured I have offered her nothing but the nightmare!!!!


    And one more very important thing: I have just realized I used to post here before, a few years ago as "madday". You can see my story. Sorry for this (I doubled my profile) but since I started to feel better I have completely forgotten about severe symptoms (minor ones I just ignored) about all of the forums I have visited almost forgotten about the facking story I have expirienced!!!
     
  19. taniaaust1

    taniaaust1

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    That does happen. When I had my remission I like blocked out all the nightmare past of this illness and of how sick I'd once been. It was something I just wanted to get away from and never come back.

    Sory to hear you passed it onto your girlfriend.. I believe I passed on what I have to my sister after she drank from my class.

    Im concerned currently as my almost 2 yr old granddaughter got hold of my glass while visiting me the other day and drank from it before I could stop her. I feel sick inside knowing she did that and now possibly at risk. (which is exactly what happened with my sister before she got what could be diagnosed as ME/CFS which she's had now for 2 years).

    I think its important to not beat ourselves up and blame ourselves thou when things go wrong and others before we can stop them, use our things or accidently get infected. All we can do is be as cautious as we can be.
     
  20. Omar88

    Omar88 Senior Member

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    We are all in the same page, I left my GF the one i choosed for my future because of this so i can feel you !

    Anyhow we could help each other here bring more people and try to do something ! every time the umber get bigger the answer would be nearer or that what we all hope !
     
    Yocheved likes this.

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