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My autoimmunity results - I'm very scared

Discussion in 'Immunological' started by Sherezade, Feb 19, 2013.

  1. Sherezade

    Sherezade Guest

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    Hi, i just got my autoinmunity results and i don't know how to take it. I have very low C3!

    Acs antinuclears ANA 1/140 Negative
    Acs antinuclears ANA 1/160. Negative
    ANCA Anti citoplasm of neutrophils Negative
    MPO Anti mieloperoxidasa 1.0 (0-5)
    PR3 Antiproteinasa 3 1.0 (0-5)
    Acs Antielastasa 5.1 (0-12)
    Crioglobulins CRIO 0.22 (0-0.50)
    Acs anti SS A (RO) 0.112 (0-0.300)
    Acs anti SS B (LA) 0.066 (0-0.290)
    Reumatic Factor < 6.72 (0-12.5)
    CH50 45 (40-62)
    C3 55 (84-170)
    C4 21 (15-49)
    VSG Globuls sedimentation 15 (0-20)

    I was reading and low c3 could be for micotics infections. I have a candida overgrowth. But i can be also for nefrotic damage! Even though i had a full blood test a month ago and everything turned out normal I'm very scared. I will take those results to a reuma specialist.

    :(
  2. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    WillowJ likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Thanks for that link meryl. I found it very interesting as Ive had double pneumonia and a lot of issues with Staph. aureus over the years. Ive never had this thing tested.

  4. Sherezade

    Sherezade Guest

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    Very helpful indeed Meryl, thank you very much. I get many respiratory infections very often, even before that i got sick. I thought it was because i'm a devoted heavy cigarrete smoker, but apparently it has something to do with the low c3.
    merylg likes this.
  5. WillowJ

    WillowJ Senior Member

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    interestingly, Lupus is listed as low complement proteins, but high can indicate a flare. Similarly, high complement proteins can occur during PEM in ME/CFS:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2583111/


    I don't know whether that relates to low complement proteins (from ME) at other times, however.
    merylg likes this.
  6. Marlène

    Marlène Senior Member

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    Edegem, Belgium
  7. Sherezade

    Sherezade Guest

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    Hello Marlene, thank you for the link. I just read it.

    Could you elaborate a little bit more about your own experience with LDN? Did you have a autoinmunity diagnoses?

    I would appreciate it a lot.
  8. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    hello

    I have positive ANA (80 - 320) since childhood. Some doctors gave me the diagnosis of lupus because of the butterfly rash, the sun sensitivity, the headaches, the fatigue, ... Other doctors laughed at me.

    My last pregnancy was hell, I thought it were the hormones. It became worse, I was sick as a dog. In 2007 I collapsed, was brought to hospital, couldn't speak anymore. They told me it was 'nothing'. My mother insisted and they found antiphospholipid syndrome, thick blood and a small aneurysm. Three weeks later I had to go back to work. Don't ask me how.

    One year later I crashed, lights went out for three months, I was semi-unconscious for three months most of the day. For 14 months I did not leave my bed. My mother fed me like a baby, my partner washed me, my 3 children were allowed in my room for 5 minuter per day only. I was completely intolerant to all light, sound and had a lot of pain. I could not even brush my own teeth without collapsing for days.

    When I was able to leave my bed I visited a neural doctor who treated me for a year with procaine. Very helpful. I slowly regained my strength.

    Then I met someone who explained me LDN. I decided to give it a try. It was too hard, I quit after a month. The dose was very low, the prescriber did not understand. I decided to try again one month later, I was desperate after all the success stories I had read about LDN. This time I started ultra low dose for 4 weeks. The prescriber laughed at me, said it would never work but it did. It generated huge herxheimer reactions.That was the tough part for let's say 6-8 months.
    I slowly increased the dose about every two weeks and after 1,5 year I finally reached an acceptable dose.

    During the time I used LDN, my ANA was always negative (but once) and a lot of symptoms have disappeared and never come back. I stopped the treatment for one year and still they did not come back. However the ANA was positive again. So I decided to start the LDN again ... and the ANA is negative again :)

    Symptoms that have disappeared:
    I'm able to listen to music again, I can read again, I understand what people say mostly lol, I recover much more quickly than I used to, I don't feel uncomfortable when people don't agree with me, I can write and make almost no more mistakes unless I'm tired, my adrenal fatigue is less, I can drive a car again ...
    Imagine I was 80-90% bedridden before.

    It does impact your sleep quality so I take 3 mg of melatonin to be sure to pass the night.

    My latest blood test is for bartonella, it mimicks lupus. I will get the results in 2 months time.
    Sidereal, Valentijn and taniaaust1 like this.
  9. Sherezade

    Sherezade Guest

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    Wow! Dear, I'm sorry that you had to go through all that, but i'm glad that you found your way to recover.

    As you can see i don't have a positive ANA but if i have low C3 maybe there's some autoinmunity latent. So i want to stop it before it progress.

    Something of your story has called my attention. Did i understand wrong or you had die off (herxheimer) symptoms for six months? How were you able to cope with that? How were you sure that it was die off symptoms and not that you were getting worse?

    I ask because i was taking reverastrol which is a powerful antioxidant and antimicrobial and it made me feel like hell, so i stopped it. It actually made me bedridden for some days. And someone here mentioned it could be a herxheimer reaction, which i assume is good because something is being killed.

    I wonder if i can get one of my doctors to prescribe me LDN. Maybe i can convinced my psychiatrist to do it. I will mention it for sure.

    Thank you!
  10. Hip

    Hip Senior Member

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    If you cannot get your doctor to prescribe LDN, you can do what many ME/CFS patients do, which is to buy the drug yourself, from overseas pharmacies such as these that do not require a prescription.
  11. Sherezade

    Sherezade Guest

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    Thanks Hip, but i wonder if i get the 50 mg pills, how do i break them into smaller doses.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You don't break them, you dissolve them in distilled water (measured carefully so you can divide into the dose you want). Then you take your dose and keep the rest in a brown glass bottle in the fridge. It stays potent for a month.

    Sushi
  13. Hip

    Hip Senior Member

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    I do actually break the 50 mg pills into tiny parts, using a sharp knife, like this:

    First cut the pill in half. Then cut each half again, to make 4 quarters. Then cut each quarter into 3 thirds. You will now have 12 tiny parts.

    Each of these twelve parts will weigh 50 ÷ 12 = 4.2 mg, which is about the right dose for taking LDN before bed each night.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hip

    That could possibly be a bit high as a starting dose for many though. We are all so different and some seem to be very sensitive to LDN. I started at 1.5 mg and that was all I could handle for a while.

    Sushi
  15. PhoenixBurger

    PhoenixBurger Senior Member

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    Would LDN be helpful for someone just starting out on this journey? Before having developed any major autoimmune symptoms ... still in those beginning stages .... with a new CMV diagnosis .... still trying to clear that first acute CMV infection .... but very worried (due to all the CNS symptoms and neuromuscular symptoms) that he may be on the track towards something worse .... ? Would LDN very very very very low dose be smart / intelligent / possibly preventative for him? Or totally wrong situation.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It wouldn't hurt to try a very low dose of LDN. It is hard to predict who will respond. It is sort of...the proof of the pudding is in the eating!

    Best,
    Sushi
  17. Sherezade

    Sherezade Guest

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    Has it worked for you? Do you feel better?
  18. Marlène

    Marlène Senior Member

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    You need:
    1 tablet 50mg Nalorex of Naltrexone
    10ml NaCL 0,9% / distilled water
    1 little dark bottle 30 ml with dropper

    Preparation:
    Clean the bottle
    Add the tablet of 50 mg
    Add the ampul with 10 ml of distilled water
    It takes about 2 hours to dissolve.
    The concentration LDN will be as follows : 0,5mg LDN = 2 drops.
    The bottle contains in total 200 drops = 50mg LDN
    Keep 1 month in the fridge, then change the content.

    How to take it:
    Shake the bottle
    1 drop = 0,25 mg
    2 drops = 0,5 mg

    Safe start-up:
    Week 1 - 4: 0,25 mg
    Week 5 - 6: 0,50 mg
    Week 7 - 8: 0,75 mg
    Week 9-10: 1 mg

    Pour the LDN drops in a spoon and drink a bit of water between 9.30 pm - 12pm. See how your body reacts the next day. Sometimes half an hour can make a huge difference. I feel best when I take it between 9.30 and 10pm
  19. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    160 is considered positive in Belgium.
  20. Marlène

    Marlène Senior Member

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    Good idea, it was a psychiatrist who proposed me the LDN in the beginning. He had Parkinson and knew the benefits for the neurological symptoms and fatigue.

    If he/she reluctant, propose them to mention one pill per month on the prescription (instead of one pill per day for drug addicts). Some doctors feel more at ease prescribing it off label that way.

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