CDC Reverses Course on Debunked Treatments for Chronic Fatigue Syndrome

Discussion in 'News and Research' started by Nanie46, Oct 1, 2017.

  1. Nanie46

    Nanie46 Moderator

    I saw the article in the link below, on the facebook page of Dr Richard Horowitz, a Lyme literate MD.

    Here are his comments about the sure to read them:

    "Lyme disease is the great imitator. It can look like Chronic Fatigue Syndrome (CFS), as well as a host of other diseases, and it turns out its not just Lyme where patients have had problems with misleading science.

    Although some patients with CFS have had help with anti-viral's and immune modulating drugs, most of the patients who have seen me with the diagnosis of CFS/ME end up having Lyme-MSIDS. They have an overlap of different infections (Lyme, Bartonella, Babesia, Mycoplasma, Q-fever, Tularemia, Brucella..) as well as overlapping causes of inflammation on the MSIDS map. These include hormonal disorders, POTS/dysautonomia, environmental toxins with detoxification problems, food allergies with leaky gut, mineral deficiencies, mitochondrial dysfunction,etc. Anyone with a chronic fatiguing/musculoskeletal illness with sleep problems and dysautonomia needs to be evaluated for Lyme-MSIDS. Going through all of the 16 factors on the MSIDS map helps determine where the inflammation is coming from, so it can be properly treated.

    Putting politics aside, working together for the benefit of those who suffer with "unexplained chronic illness", and shifting the paradigm for chronic disease by going from a one disease/one etiology model to a multifactorial model like MSIDS is paramount if we are going to start making a dent in the chronic disease epidemics facing us in the 21st century."
    hangininthere likes this.
  2. hangininthere

    hangininthere Well-Known Member

    Thank God. Thanks for posting this great news.

    I'll add the link to the CDC on Chronic Fatigue Syndrome on the CFS Main Forum.

    Nanie46 likes this.
  3. tamsyn2

    tamsyn2 Member

    What is an MSID? I've been tested for Lyme and it was negative .... but would a Lyme test pick up all this other stuff? Or is it a special test?
  4. tamsyn2

    tamsyn2 Member

    Okay, found a quote from the site Integrative Practitioner:
    "different tick borne infections causing fatigue and musculoskeletal pain syndromes including bacterial infections such as Lyme disease, Ehrlichiosis, Anaplasmosis, Bartonella, Mycoplasma, Chlamydia, RMSF, Typhus, Tularemia, Q-Fever, Brucellosis, Tick paralysis, STARI, B. miyamotoi and other new borrelia species. Tick-borne parasitic diseases such as Babesiosis and other piroplasms, and the expanding number of new viral infections are being found in ticks, including the Heartland virus, Powassan encephalitis and other viral encephalopathies; learn to identify the differences as well as the classical medical treatments for each infection, including side effects, drug interactions, and laboratory follow-up."

    I am pretty unsure that a standard Lyme test would look for most of this ... I wonder how one could get these tests done?
  5. Nanie46

    Nanie46 Moderator


    MSIDS is Multiple Systemic Infectious Disease Syndrome. Dr Horowitz, a Lyme literate MD, came up with that name because people with Lyme and other chronic diseases usually have more than one infection plus lots of other contributing factors to their illness.

    Some of those other factors are heavy metals, nutrient deficiencies, food sensitivities, toxins, etc.
    Dr Horowitz looks at many factors to determine the best course of treatment for a patient.

    He has written 2 books about this..."Why Can't I Get Better?" and "How Can I Get Better?"


    Regarding Lyme tests...Lyme tests are extremely unreliable and can miss up to 50% of cases of Lyme disease (Borrelia burgdorferi). My Lyme tests were negative and I have chronic Lyme disease.

    I know MANY people who also have or had Lyme and their tests were NEGATIVE also.

    I help run a Lyme disease support group and I have heard that same story over and over again.

    The standard Lyme tests only look for one strain of Borrelia and there are other strains that infect humans also that produce Lyme-like symptoms.

    There are many other reasons why the tests are very unreliable in fact, that in Virginia, there is a law that requires practitioners to give patients a notice that says that if their Lyme test is NEGATIVE, it does not mean they don't have Lyme disease.

    Lyme tests CANNOT and DO NOT detect any other infections such as Ehrlichiosis, Anaplasmosis, Bartonella, Mycoplasma, Chlamydia, RMSF, Typhus, Tularemia, Q-Fever, Brucellosis, Tick paralysis, STARI, B. miyamotoi and other new borrelia species, Babesiosis and other piroplasms, Heartland virus or Powassan virus.

    A Lyme literate practitioner would understand all this and be able to evaluate a patient and order appropriate tests through more reliable labs such as Igenex, Galaxy labs, Fry Labs, Advanced Labs, etc.

    It is very important to remember though, that Lyme should be a clinical diagnosis...meaning it is based on a person's history, symptoms, physical exam and lab tests....not just a lab test.

    Conventional medicine often discounts Lyme as a diagnosis if a person's Lyme test is negative, even if a person's history and symptoms suggest Lyme. That leaves lots and lots of people undiagnosed/misdiagnosed, untreated and sick forever.

    Check out
  6. tamsyn2

    tamsyn2 Member

    Wow, thanks for all this great information.
    Nanie46 likes this.
  7. hangininthere

    hangininthere Well-Known Member

    I had a sizeable target-shaped bulls eye rash behind my knee at around age 23 or 24. I didn't see a tick or a bite. Just that rash with no other symptoms, no itching or swelling, etc. I remember remarking offhandedly to my boyfriend about how strange it looked, then forgot all about it.

    I already had Chronic Fatigue Syndrome since age 18 1/2, and didn't feel any sicker after the rash. Makes me wonder.

    I've read that the Lyme symptoms can hit you years later. It wasn't until age 45 that I got way worse and became bedridden. I know I became bedridden soon after starting to take antidepressant medications that didn't work - I tried every kind for eight years to no avail - they just gave me intolerable side-effects without getting me up and going, and severe orthostatic intolerance laying me out flat to this day.

    Nanie46 likes this.
  8. tamsyn2

    tamsyn2 Member

    I notice that Davis of Stanford U said that the disease changes for an individual over time. There are shifting symptoms, and years that are better or worse. So you had many years, after diagnosis, before you got to the bedridden stage. Other people seem to have that stage first and then get slightly better. I crashed badly for many years, but then went three years without a true crash (though life was still a struggle, and I was limited in what I did). Then I went through a traumatic divorce and move which set me back and I crashed again. Now I've been two years without a true crash, though I do get days where I have to do absolutely nothing as I'm starting to get that dying feeling. I could easily crash if I didn't pace rigorously ... which is such a challenge sometimes!
  9. hangininthere

    hangininthere Well-Known Member

    I just remembered, and will go back and edit and add it to my CFS testimony in the CFS Intro thread, that when I first got CFS at age 18 1/2, I was bedridden at first, sleeping day and night for almost two years straight, except for occasionally going out and partying a couple of days since I was young - it was when I took speed that got me up and going a couple of days at a time, very occasionally got out. I just thought I had depression.

    After I snapped out of the first two years bedridden, my Mom kept kicking me out for being lazy. I still dragged into the kitchen to get something to eat real quick, then dragged back to bed, leaving all the condiments and things out on the counter instead of putting them away. I couldn't work a job for more than a week or two at a time before quitting. I so needed to rest at home in bed. Tough-love does not work on a person who is desperately ill.

    I didn't get the bulls eye rash until a few years after I revived enough to do daily activities, and didn't get bedridden again until many years later.

    Last edited: Nov 6, 2017
  10. Nanie46

    Nanie46 Moderator

    Maybe you already know that a bullseye rash is diagnostic for Lyme disease, Patti.

    Perhaps you were also bitten as a child and didn't know it. That happens all the time. Ticks carry many other serious infections besides Lyme.

    Most people I know had more than one infection that complicates the overall picture of the illness.

    I know people who have 7-8 infections.

    I never saw a tick or a bite either even though I have chronic Lyme. I also had Bartonella and Rocky Mt Spotted Fever.

    Babesia and Lyme are a couple infections that can cause post-exertional malaise.

    Lyme, mold and mycotoxins are some possible contributors to POTS/Orthostatic hypotension.

    Here is a study:

    This is worth reading:

  11. hangininthere

    hangininthere Well-Known Member

    Yes, I've learned a lot about Lyme Disease from ProHealth forums. That's what made me think of that bulls eye rash I had.

    Three months before I got the CFS, I spent a day at a park hiking and all. Could the symptoms have shown up three months after getting infected with Lyme? And wouldn't another bite a few years later (the rash I saw) make me even sicker at the time?

    Good articles you posted the links to, thanks.

  12. Nanie46

    Nanie46 Moderator


    You're welcome. I'm glad you have learned about Lyme on our forums.

    Yes, the symptoms could have shown up three months after getting infected.

    It was about that long for me until the infection spread throughout my body and caused chronic symptoms.

    In retrospect, I can now see how it all happened. Just didn't know it at the time.

    The 2nd bite could have made you sicker or could have triggered more symptoms later during a stressful time.

    Just about anything is possible with Lyme.

    Another good site:

    A very interesting and informative blog by a Lyme literate MD:

    This Lyme literate MD has a great site and writes a blog too:

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