Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

32 of 40 chronically ill have spirochetes in their blood

Discussion in 'Other Health News and Research' started by Theodore, Feb 16, 2016.

  1. matsli

    matsli

    Messages:
    37
    Likes:
    139
    Sweden
    Another study and a similar result. 8 patients with ME / CFS and 3 other people were suspected that they had Lyme disease. 10 of 11 had already been tested for Lyme disease in healthcare. All had negative results. All were subjected to dark field microscopy. In the film you can see that all have spirochetes in their blood. And this is a real good microscope.


    Read more here
     
  2. Theodore

    Theodore Senior Member

    Messages:
    687
    Likes:
    679
    France
    I looked into some french Lyme forum for things related to this. Some people that were negative for both Lyme tests conducted this same study, at home or at a vet practice and it was positive, they saw these spirochetes.
     
    matsli likes this.
  3. roller

    roller wiggle jiggle

    Messages:
    451
    Likes:
    218
    how could this be technically explained?

    how can spirochetes be 'overlooked' when looking for them?
    were they too small, too few, something very different with them than usual spirochetes?
    something wrong with some solution the lab may have used?
    previous negative probands have something in common (sex, blood type...)?
    user error ?
    if these arent spirochetes, what could be the closest thing they are?

    the hungarian guy who did this special test should have some ideas?

    this test should be inferior to the standard tests, as the 'gießen' study from the previous page suggest, when i understood this right...
     
    Last edited: Feb 18, 2016
    matsli likes this.
  4. Theodore

    Theodore Senior Member

    Messages:
    687
    Likes:
    679
    France
    For those interested and even if it's in french, it could be interesting to watch a part of this documentary.
    Please start to watch at 14:58 min. You can see a young man with chronic fatigue, completely lost, he decided to buy a microscope in order to know if there was any spirochetes in his blood, which he found.



    I don't know how it works elsewhere but in France the Elisa test allows only 5% of positive results for each region...
     
    Last edited: Feb 18, 2016
    cigana, helen1, leela and 2 others like this.
  5. matsli

    matsli

    Messages:
    37
    Likes:
    139
    Sweden
    I am convinced that a subgroup of ME/CFS has lyme disease. In this article you can read it can be as many as 88-95% who have Lyme disease. You should not ignore the fact that there may be an option for some.

    http://www.perthnow.com.au/news/wes...886911487?nk=efce142df433871d387ebf5d6e044429



    Interview with Professor Kenny De Meirleir about Lyme disease

    Listen from about 32.30 min into the audio file.

    KDM says:

    - CFS and late stage of Lyme's is basically the same thing

    - Genetics plays a role if you will get sick or not

    - Several has Lyme disease, but do not develop symptoms

    - Bartonella (Co-infection) is more common than you think, there are more varieties.

    The antibody tests available today are substandard

    We have much to learn

    Audio file:
    http://www.thedrpatshow.com/shows/mak-141001-van-dromme.mp3
     
    taniaaust1, justy, Dufresne and 3 others like this.
  6. roller

    roller wiggle jiggle

    Messages:
    451
    Likes:
    218
    perhaps they could draw blood from foot arch/side - if there are no obvious objections, medically/technially.
    its the most fav hangout and imo there could be the highest density in the body (of all fluid/pathogen at a time).

    by any chance from the RIGHT one.

    (perhaps lefties from the left?)
     
    Last edited: Feb 18, 2016
  7. Kina

    Kina

    Messages:
    10,132
    Likes:
    17,225
    Sofa, UK
    Just a few things. Did they culture what they found under the microscope. If not, it's a bit premature to label the organisms as spirochetes and then go on and speculate that it is borrelia or another Lyme related bacteria.

    From reading on PR and other websites, I was under the impression that borrelia is found in such low numbers in fluids and tissue that it requires many many hours to do a good search of just a few mm of tissue. I have read repeatedly that finding Lyme bacteria under a microscope is like looking for a needle in a haystack.

    Obviously, there is something on the images. Are they spirochetes -- they seem to be a bit indistinct but I know very little about that. When there is direct observation of an organism via microscopy, it is impossible to determine the species just by looking at it. I believe live blood cell analysis is not currently used as a worthwhile diagnostic lab test because it reveals very little diagnostic information. Can it be used to diagnose -- no, unless you go on to determine what the organism actually is. Can it be used to treat -- no, because you have to know what organism it is first to provide proper treatment.

    I think this is a very important question. One would think if it was a test that could be helpful in diagnosis of lyme it would be widely used already

    Are you talking about 'Quantitative Buffy Coat Analysis' -- this has been used before in looking for syphilis, malaria etc. -- eg for rapid diagnosis. I have seen slides of that and the spirochetes for syphilis look distinctly like spirochetes.

    It's all very interesting. If these people whose blood was tested have some kind of microorganism in their blood, the next step would be to find out what that microorganism is or what exactly it is that we are looking at. Is it borrelia or related, is it something else? Is it something unique to patients in Sweden etc, etc.

    I know this is a private study. I have only read the abstract. The purpose of the study was to investigate 'chronically ill people without known biomarkers that might have abnormalities in their blood compared to healthy people. The results seems to indicate that there is something in the blood of the "unhealthy" people.

    Question -- how did they make the leap to that it was 'spirochetes' that they were looking at because they don't appear to look like spirochetes? Did they do any further tests to determine the DNA of the organisms?

    I think for any meaningful results, one would have to do further analysis before naming the organism. Are there any plans to do this? Sorry if I missed anything in this thread, I have only glossed over it.
     
    Last edited: Feb 21, 2016
    taniaaust1, actup, Mij and 4 others like this.
  8. matsli

    matsli

    Messages:
    37
    Likes:
    139
    Sweden
    I agree
     
    Antares in NYC likes this.
  9. Pactallon

    Pactallon

    Messages:
    5
    Likes:
    19
    @Jonathan Edwards In my case Titti said that it looks similar to borrelia garinii and gemmaform(cyst). But its not a diagnosis so i cant really say i have that. But its highly probable. I havent sent test to any labs abroad. I had 3 negative elisa tests during a 8 year period which showed nothing. I did one Elisa test 2 weeks after the microscopy which was also negative. I haven't sent tests to other labs but i know of people who did and confirmed borrelia @ arminlabs. So person had spirochete like things and cysts in blood and confirmed by tests.

    But i hope i will soon have been able to fully recover. Will probably do a new test in the near future with Dark Field Microscopy to see what kind of progress I have made.
     
    justy, matsli and Mel9 like this.
  10. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    582
    Likes:
    1,656
    USA
    I just wanted to point out that Borrelia Burgdorferi is not the only spirochete that leads to Lyme and Lyme-like illnesses. They have officially identified 12 (including Borreli Garini, Miyamotoii, Afzelii, and now Mayonii), although some researchers like Dr. McDonald have identified even more forms of borrelia. The standard Lyme tests only identify Burgdorferi, not the other variations (although sometimes they tested positive for Mayonii, which is how they identified this new bug recently).

    I fear that a follow up Lyme PCR for the squiggly bugs on those DFM videos may still come up negative, since it's very specific for Burgdorferi only. If that bug is any other variation of borrelia, it's likely to not detect it.
     
    Last edited: Feb 18, 2016
    justy, cigana, helen1 and 2 others like this.
  11. duncan

    duncan Senior Member

    Messages:
    2,085
    Likes:
    4,520
    Even in culture -confirmed cases, PCR's often come up negative.
     
    Antares in NYC and matsli like this.
  12. matsli

    matsli

    Messages:
    37
    Likes:
    139
    Sweden
  13. leela

    leela Slow But Hopeful

    Messages:
    3,222
    Likes:
    7,234
    Couchland, USA
    I could be wrong, but I think I remember reading a comment from Carey Mullis (Nobel winner for PCR) saying he didn't think PCR should be used as a diagnostic tool.
     
    Antares in NYC likes this.
  14. msf

    msf Senior Member

    Messages:
    3,210
    Likes:
    4,504
    Was the medical history of the patients recorded? If they had good reason to believe they might have Lyme (like a history of tick bites, etc), then the results would be less surprising.

    It would be great if all the patients involved in this study could have the LTT-ELISPOT done.
     
  15. msf

    msf Senior Member

    Messages:
    3,210
    Likes:
    4,504
    Also, the fact that spirochetes have apparently been found does not mean that they can not be Borrelia (although I admire the seemingly paradoxical logic of that supposition), they could just be a species of Borrelia that is not well researched - such as Borrelia Mayonii, which has just been reported to cause Borreliosis with ´unusually high spirochaetemia.´
    http://www.ncbi.nlm.nih.gov/pubmed/?term=borrelia+mayonii
     
    Jonas likes this.
  16. duncan

    duncan Senior Member

    Messages:
    2,085
    Likes:
    4,520
    You'd think there'd be a microscopy template of some sort that could reliably identify spirochetes, and then distinguish between them.

    If there isn't, there needs to be.
     
  17. Dufresne

    Dufresne almost there...

    Messages:
    877
    Likes:
    1,134
    Montreal
    It's quite interesting this guy's "borrelia" at 16:30 looks a lot like the one @matsli found. Replication might just happen.
     
    Theodore, matsli and Antares in NYC like this.
  18. Jonas

    Jonas

    Messages:
    1
    Likes:
    5
    Hello by the way...

    Short History:
    My girlfriend got sick in November 2014 with high fever and a not normal tiredness (was asleep 22-23h/day). She got better in January 2015 but she wasn´t able to work at all.

    By June 2015 she was so ill that we had to take her to the emergency health care. They couldn¨t help her. All the test show normal values and examinations of her didn¨t reveal anything.
    During (1 month) the summer she reduce her weight from 62 kg to 48 kg and the doctors didn´t know what to do with her. We tried to get our doctor to let us go to Stora Sköndal (ME/CFS Clinic in Stockholm) but they were having a hard time to get us in there. (Still waitng for the first meeting).

    In November 2015 I got in contact with Matsli at the FB-Group he had started for ME/CFS-people in Sweden.
    Thru his group I managed to get in contact with Titti at Dalapraktiken and she came home to me and my Girlfriend to do the live blood analysis.

    At this time My girlfriend had done 5 Elisa-tests (4 serum and 1 Spinal Fluid) all came back with Negative results. She has also manage to do 1 PCR-test on Spinal-Fluid that was negative as well.

    The 12th of February did Titti find spirochetes (Borrelia garnii?) gemmaform (cyst) but also Mycoplasmosis, Anaplasmosis and maybe Rickettsia during the analysis.
    Blood samples from this day is sent to Swedish Laboratory to be sure what it´s in my girlfriends body.

    There will be more testing on her blood soon but then it will be sent to Armin Labs in Germany for a second opinion.

    My girlfriend is bound to her bed 24/7 she can´t do nothing by her self anymore...
    She turned 30 years old the 25 December 2015 and we have 2 kids that are 4y and 7y old. It´s really hard to see the person you love get to the point where they don´t want to live anymore because of the illness and the struggeling to get well when you don´t get any help from the health care system.

    She is one of the people in the test that Matsli and Titti has done... Hopefully this will be a turning-point for our little family.

    Thank you Mats!
     
  19. matsli

    matsli

    Messages:
    37
    Likes:
    139
    Sweden
    Jonas, I hope your wife will get healhy soon!
     
  20. Strawberry

    Strawberry Senior Member

    Messages:
    839
    Likes:
    1,605
    Seattle, WA USA
    @matsli Is your wife and others in the group (like Jonas) all sudden onset and severe? I'm curious because there are so many different "types" of CFS. I am wondering if this is something I should look into or not. I have been sick for 20 years, but can still work full time, although that is ALL I can do now. No housekeeping, very little cooking, etc. So I am different enough that I may not be in the same ME/CFS group as your small test group. I feel I wouldn't have these spirochetes in my blood, but just wanted to ask anyway. I leave no stone unturned until I find out what I have!

    Best of luck to all in your group, I hope soon this can be lab confirmed, and treatments received! Any "group" that can be removed from the ME/CFS group and given an official diagnosis is heaven to me.
     
    Jonas likes this.

See more popular forum discussions.

Share This Page