arrow25 Comments
  1. Jen
    Mar 26 - 4:56 pm

    great information on a symptom I’ve had particular difficulty with.
    Hyperthermia treatments have assisted in ‘waking up’ my immune system and I am now fighting off the evil invading critters :)

  2. Brent
    Mar 26 - 5:21 pm

    How can you prove infection? ME researchers haven’t been able to do so. Treating assumed infections with untested substances sounds neither effective nor safe.

    • Cort Johnson
      Mar 28 - 11:01 am

      I think there’s significant empirical evidence that infection is involved at least in a subset of patients. Dr. Peterson has reported on a retrospective Vistide study that found it significantly helped a subset of this patients and Dr. Peterson, Dr. Montoya and Dr. Lerner all use antivirals in some patients with success.

      The Lipkin study did not find pathogens but several herpesvirus experts think his assay was not sensitive to find the kind of infection present in ME/CFS.

      I suspect that Ken is probably also going natural means to improve immune functioning as well.

  3. Ken Lassesen
    Mar 26 - 6:07 pm

    If you assume that CFS is caused by one infection alone — no way. That approach has been tried for decades with no luck. The model that I use is a post-infection persistent dysfunction gut bacteria — big words… In short, while you were sick (the pre-CFS flu), the infection changed your gut bacteria. The gut bacteria changes caused many of the symptoms.

    After you got rid of the infection, the gut bacteria did NOT return to normal. Instead, it took a “sick” life of its own, keeping the symptoms going – chronically!

    For evidence see http://cfsremission.wordpress.com/2014/03/16/gut-bacteria-testing-part-2-what-cfser-have-gotten-back-from-the-labs/

    If you get your gut DNA sequence by Ubiome. (http://ubiome.com/) or AmericanGut (http://americangut.org/ ) – no MD order required, < $100. You will likely have your evidence.

    • Eric Anderson
      Mar 29 - 8:10 am

      This sounds really interesting, Ken.

      I went to uBiome site and I thought it said it takes several months to get results. That seems too long. I’ll check the other site. The price is right, at least.

      I appreciate the three part series you did last year on normalizing gut bacteria, and have been thinking a lot about it. Looking back now, I think all my problems probably started in my gut. I think it was stress and food allergies that probably disordered the gut ecology, and then maybe an infection on top knocked me down. Or maybe infection came first and led to disordered gut.

      How reliable do you think these DNA tests are? One would really like to be able to put the right targets in the crosshairs.

      • Ken Lassesen
        Mar 29 - 11:19 am

        I believe they are at least 99% accurate. The testing is done in commercial labs with the state of the art machines (which is why they can do it so cheaply!).

        My wife has Crohn’s and have made great improvement (but no remission yet) from the herbs/probiotic route. She is doing tests from both to get as much information as possible (when the results are received – I will post a detail comparison about what is reported by each.

        It will give key information as to what the target is — the problem is getting the right bullets to hit the target. If you are in the US close to the Canadian border — you have the greatest choice of ammo available. The US is pretty unregulated for probiotics, and those that are regulated (Mutaflor E.Coli Nissle 1917) can be purchased in Canada.

        For the overgrowth, we have to walk a slightly complex mine field. We want to kill off the overgrowth WITHOUT making the undergrowth worst. Slugging thru PubMed, I ended up with some “higher probability of being the right profile” herbs – Tulsi and Neem. If E.Coli overgrowth (or as a pre-Mutaflor purge) Haritaki.

        In the US, we are a very free enterprise country — thus if folks like Swanson gets saturated with requests for probiotics that contain ABC, they may actually produce it….

        So, I believe that this is likely the best path forward. Not an easy path — but a viable path.

  4. issie
    Mar 26 - 6:35 pm

    Loved this!

    I feel autoimmune and inflammation are our two main problems. Addressing those with diet first and then assister supplements and/or antibiotic and antimalarial products along with enzymes to break down biofilms may be our solutions. And then probiotics to balance out flora and gut ecology.

    Looking forward to your follow up blogs on this.

    Issie

  5. Gina
    Mar 27 - 9:03 pm

    Issie! I totally agree… I have always felt like inflammation & autoimmune are our two problems too!

    Curious, what enzymes are you taking to break down the biofilms?

    Great article Cort! Thank you!

  6. issie
    Mar 28 - 12:17 am

    I use lumbrokinase at least two hours before either my antibiotic (doxy) or antimalarial herbs. Then at least two hours later I use a good probiotic.

    I feel this along with a lowfat, whole food, vegan diet (which also address the immune system and inflammation) has been my best protocol to date. I’ve been doing this for about a year now with real good results. (Vegans use no animal products.)

    I use some other supplements too. I found turmeric to be very essential for me.

    Issie

  7. Ken Lassesen
    Mar 28 - 8:17 am

    IMHO -Turmeric should be the first supplement of choice for CFS (and likely the cheapest, 2 lbs or organic turmeric costs ~$20 when purchased in bulk). It is a wonderful anti-EBV, anti-HHV, anti-coagulant and reduces histamine levels — per PubMed Articles.
    See
    http://cfsremission.wordpress.com/2014/03/23/histamine-and-anticoagulants/
    http://cfsremission.wordpress.com/treatment/thick-blood-clots-dimension-of-cfs-etc/turmeric/
    http://cfsremission.wordpress.com/2014/01/15/taking-turmeric-why-and-how/

    • issie
      Mar 28 - 2:23 pm

      Since I have a CBS mutation and issues with sulphur, I’ve been afraid to try ALA. I have a bottle, just havent been brave enough to attempt it.

      I purchase bulk turmeric too, from the spice isle. Put it in my own caps.

      I also have to use some pretty high doses of Vit D3. I saw that listed on your site.

      Some of the things you talk about, go along with MCAS (Mast Cell Actvation Syndrome). Have you looked into that? This is something else I have and treat. It’s one thing that I must address and not ignore.

      Issie

      • Ken Lassesen
        Mar 28 - 3:29 pm

        On the surface, MCAS (Mast Cell Actvation Syndrome) and Histamine intolerance appear to be the same. Mast Cells are what dump histamine into the body.

        I believe that a subset of CFSer has this issue complicating their treatment. A good example is Evening Primrose Oil — it and ALA are very similar in effect. EPO is poorly handled by some CFSer — since it is also rich in salicylates and ALA is not — the reason may be because of salicylates causing histamine release (speculation).

        Part of the problem may be due to gut bacteria, see http://cfsremission.wordpress.com/2014/03/26/histamines-allergies-and-gut-bacteria/

        http://cfsremission.wordpress.com/2014/03/08/histamine-intolerance-a-possible-cfs-mechanism/

        http://cfsremission.wordpress.com/2014/03/06/the-histamine-production-model-of-cfs/

        While I seem not to be either salicylates or histamine sensitive, I know enough CFSers that are one or the other, and recently started to drill into this area because of one of them. This issue appears to fit well into my existing model of what causes CFS (which allows treatment options to be research better — i.e. we want not just anticoagulants, but anticoagulant that do not provoke histamine release…)

        • issie
          Mar 28 - 4:33 pm

          Surprisingly, some MCAS docs are having some use low dose aspirin to cause a slow mast cell degranulation which does release histamine. This works for some, but not others. (I can’t do it.) The idea is to create a slow release to avoid a big dump, possibly causing anaphylaxis.

          I have found that quercetin helps with not only the mast cell issues, but also thins the blood and helps with inflammation.

          Issie

  8. Mike Dessin
    Mar 28 - 10:11 am

    Wonderful article Ken..We get the best info here on Health Rising!

    Do have to disagree on the tumeric and some of the other supplements such as ALA listed on the CFS wordpress.com.

    This is a disease of phases…not one supplement fits all, treatment should vary depending on what phase of the disease your in..tumeric and ALA are also very strong chelaters as well and can cause very strong detox symptoms if you have been sick a long while.

    Cheers!

  9. marcie myers
    Mar 28 - 6:40 pm

    I can only glance at this article because if microbes aerobic or anaerobe or fungi or whatever critter were the culprit in whichever model…….why do I NEVER read about the complete turnaround from illness to their previously clear-minded, energetic, healthy state? Why does no one who has had this anywhere beyond the originations ever get ALL well? If you are out there, please tell me the secret. Please.

    • Ken Lassesen
      Mar 28 - 7:19 pm

      I suggest you read my story,
      http://cfsremission.wordpress.com/my-story/

      I am back to my old self, doing a highly demanding cognitive job (Principal Software Engineer) in a stressful environment (a startup, pre-IPO). I do monitor for early indicators of problems and keep pro-active in good maintenance of my gut flora (which means very little lactobacillus, but other probiotics such as E.Coli Nissle 1917 and Prescript Assist).

      • issie
        Mar 28 - 7:39 pm

        Are these two dairy free?

        Issie

      • Chris Pfeiffer
        Mar 30 - 11:11 am

        As always thanks for your insights. A few questions related to your condition. Do you or did you have PEM? Also, how is your sleep? These are 2 areas which have always been an issue for me. Also, do you have any self-imposed dietary restrictions, alcohol, wheat, dairy, etc?
        I look forward to your next email as I am planning on implementing a new plan to fight off pathogens in multiple areas. My current doctor has a plan for treating sinus issues, but I want to treat the gut too. However, none of my doctors will prescribe me minocylcine, so I am curious as to your naturopathic plan. Also, I might finally have a lead on how to get some Mutaflor, but I am sure overnight shipping from Toronto is going to be ridiculous.

        • Ken Lassesen
          Mar 30 - 10:41 pm
        • Ken Lassesen
          Mar 30 - 10:51 pm

          Yes, I *had* PEM as well as mild MCS (there is still one chemical that will set if off, but no problems around perfumes etc *now*). Sleep is now good, solid 8 hr and wake up bright alert and rested.

          My Naturopath was in a chronic lyme practice (with Dr. Marty Ross in Seattle) and the need for antibiotics was accepted. I asked for minocycline as the first choice because it is a NEUROPROTECTOR with over 300 articles on PubMed stating that. So the reason to prescribe was NOT as an antibiotic but as a neuroprotector for someone clearly having cognitive issues (in my case, a SPECT scan that the radiologist read as Alzheimer’s Disease, helped justified it).

      • marcie myers
        Mar 30 - 9:30 pm

        Dear Ken,
        In good faith, I will. marcie

  10. Dede Cummings
    Mar 30 - 5:55 am

    Great article, Ken. I would like to have a list of your articles dealing with gut microbiota to help manage Crohn’s/UC. My followers, at “Living with Crohn’s & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness,” will really benefit from your research! Cort’s site is really terrific, and helps someone like me, too (I have Crohn’s).

    Ken, did I read that your wife has Crohn’s? Maybe I could cross-post some of your articles? I am on a strict diet of no dairy, no grains, no sugar. Supplements include probiotics and turmeric. I am really healthy and haven’t had symptoms for almost eight years (I did have a partial bowel resection, in 2006, that changed my life and set me in a path toward wellness— that is when I wrote my book because I was disillusioned by the recommendations of my GI doctors who said I should take heavy-duty, autoimmune-suppressing drugs!

    Thank you all!

  11. […] Read more: Bacterial Resistance, Infection and Chronic Fatigue Syndrome: Fighting Infections Pt. I http://www.cortjohnson.org/blog/2014/03/26/bacterial-resistance-infection-chronic-fatigue-syndrome-f&#8230; […]

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