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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I’m mainly trying to figure out the cause of my fatigue and PEM. Compared to others I have very mild CFS, but cannot exercise at all.So I was reading some of this and trying to understand your goals?
If you guys fix your viral, immune, gut, etc.... issues, are you thinking you could get cured from CFS?
Oh wow. I didn’t have a triggering event like that. Mine was more gradual but I basically exercised myself into exhaustion and the CFS.
So let me ask you, have you tried any anti-virals or prescription immune modulators?
Are you cured from CFS?
I appreciate all your information! I actually started seeing a geneticist/holistic doctor six months ago and made significant progress since then by sticking to his protocol. I definitely moved from moderate to very mild. I had a huge setback when I got C diff in November (which is why I don’t want to treat the C Pneumoniae with antibiotics). I went back into moderate CFS, especially after taking fecal transplant pills and antibiotics which created a huge reaction.You can have rapid onset or gradual onset ME/CFS. With rapid onset you get plunged into full ME/CFS within days of a viral infection; with gradual onset, you slowly descend into ME/CFS over several months.
I actually had gradual onset for my ME/CFS.
As I mentioned, I tried oxymatrine, but unfortunately it did not help in my case. I also tried inosine. And Dr Chia uses Epivir as an off-label antiviral for enterovirus, but again in my case this did not help. However, each patient is different, and some will respond to these medications, whereas others will not.
I still have ME/CFS, though whereas 6 years ago it was moderate, but edging into severe ME/CFS, now I have moderate ME/CFS, edging into mild ME/CFS (on the ME/CFS scale of: mild, moderate and severe).
Where are you on that scale, would you say?
I actually am having my stomach biopsies tested at Chia’s lab today and will get the results Monday. With my titers, I’m worried it will come back really bad. I will definitely try the OxymatrineI would try oxymatrine first. No doubt you have significant bacterial issues in your gut to address, but enterovirus can infect the stomach and intestines, and may be part of the picture of your gut ill health. So your gut might also benefit from oxymatrine.
You can see an image of enterovirus-infected gut tissues in this post (the brown stain is enterovirus).
And you might like to look at some of the more interesting probiotics, like Clostridium butyricum or Prescipt-Assist, and consider whether these might be for you. Prebiotics are just as important, if not more important, than probiotics. Prebiotics are the food for the probiotic friendly bacteria. I got good results from the prebiotic called inulin — see this thread.
A friend of mine sells 4life transfer factors. Have these helped anyone? Has anyone tried Astraalgus or Maitake mushrooms? These three supplements seem to have immune modulating effects.I actually am having my stomach biopsies tested at Chia’s lab today and will get the results Monday. With my titers, I’m worried it will come back really bad. I will definitely try the Oxymatrine
Jim,
Thanks for the encouragement. This seems like an actionable step. Going after every single virus I have a high titer to seems daunting. Did you have any high virus titers and did you find any anti-viral treatments useful?
Thanks, I don’t have the debilitating fatigue a lot of folks have on here. I’m going on the elemental diet with Berberine and Allicin for two more weeks to see if it knocks it out.Happy to help! I have never tested for high viral titers because I think they are caused by immune system dysfunction and the immune system dysfunction, in my view, is caused by a messed up gut (ie. dysbiosis and increased intestinal permeability).
Jim
A friend of mine sells 4life transfer factors. Have these helped anyone? Has anyone tried Astraalgus or Maitake mushrooms? These three supplements seem to have immune modulating effectsI would try oxymatrine first. No doubt you have significant bacterial issues in your gut to address, but enterovirus can infect the stomach and intestines, and may be part of the picture of your gut ill health. So your gut might also benefit from oxymatrine.
You can see an image of enterovirus-infected gut tissues in this post (the brown stain is enterovirus).
And you might like to look at some of the more interesting probiotics, like Clostridium butyricum or Prescipt-Assist, and consider whether these might be for you. Prebiotics are just as important, if not more important, than probiotics. Prebiotics are the food for the probiotic friendly bacteria. I got good results from the prebiotic called inulin — see this thread.
Thanks, I don’t have the debilitating fatigue a lot of folks have on here. I’m going on the elemental diet with Berberine and Allicin for two more weeks to see if it knocks it out.
So my high titers to enteroviruses wouldn’t concern you even though they have been shown to bury themselves in people’s stomachs?
I basically exercised myself into exhaustion and the CFS. I’m sure it caused an unbalanced immune system.
LINKInvestigators found that with increasing intensity and duration of exercise, there was a proportional increased risk of gut damage and impaired gut function.
Specifically, the cells of the intestine are injured and the gut becomes more leaky, allowing pathogenic endotoxins normally present and isolated to the intestine to pass into the bloodstream.
This scenario of 'exercise-induced gastrointestinal syndrome' may lead to acute or chronic health complications.
I have never tested for high viral titers because I think they are caused by immune system dysfunction and the immune system dysfunction, in my view, is caused by a messed up gut (ie. dysbiosis and increased intestinal permeability).
Hi Jim,
Can you elaborate on the physiological process that would be behind a messed up gut causing high viral titers? Is this a personal theory or one that is part of some published research? I have gut problems/dysbiosis and a high viral titer (HHV6). I am very interested to learn what the proposed link is between these.
Thanks,
Dan
Third, latent and reactivated viral and bacterial infections can occur, but in the case of ME/CFS that has lasted for more than 6 months, this may be the exception rather than the rule.
Some doctors and scientists have not done a good job at educating patients and other scientists about the difference between serological evidence of infection in the form of antibodies like IgM and IgG, and physical evidence of viral replication like PCR amplification of viral RNA or DNA, or bacterial DNA.
We have learned in our autism studies with Dr. Judy Van de Water that supertiters of antibodies do not mean new or reactivated viral replication.
Supertiters of IgG antibodies mean that the balancing T-cell and NK cell mediated immune activity is decreased. This is a functional kind of immune deficiency that causes an unbalanced increase in antibodies.
LINKIntestinal hyperpermeability is often found to precede autoimmune disorders and is suspected to be the means by which abnormal passage of antigens from the intestinal lumen results in an autoimmune response.
This novel theory is encouraging as it implies autoimmunity is non-autoperpetuating and suggests the possibility of prevention or treatment of autoimmune disorders by arresting the interplay between genes and environmental triggers through intestinal barrier function re-establishment, a new and innovative approach to treatment (Fasano, 2012a).
I have been diagnosed with enteroviruses. Did you find inosine or oxymatrine effective?Some CFS/ME patients receive significant benefits from antiviral/immunomodulatory drugs, so I would not rule that out in favour of Naviaux' rather unorthodox cell danger response model, which has yet to be tested or replicated anywhere.
Dr. Chia, who advocates the enterovirus model, has had experience of treating hundreds or even thousands of patients, from which around 48% improve with his treatments (based on a conference slide that was posted here somewhere). There are also patients that respond to anti(herpes)virals. This is the basis of Pridgen protocol, which was primarily designed for fibromyalgia, but seems to work for at least a subset of CFS/ME as well. One patient of Dr. Pridgen recovered after 26 years of CFS/ME (story here). Dr. Montoya and his team at Stanford use a similar approach, treating patients with antivirals.
I will try Prescript-Assist after this SIBO treatment. One question for you. My Uric Acid levels are very low. I have read that they are important and that inosine is a great supplement to bring them up. I wonder if this is the mechanism behind inosine? Are you familiar with a proper dosing schedule? 5 days on - 2 days off was the only thing I could find.I would try oxymatrine first. No doubt you have significant bacterial issues in your gut to address, but enterovirus can infect the stomach and intestines, and may be part of the picture of your gut ill health. So your gut might also benefit from oxymatrine.
You can see an image of enterovirus-infected gut tissues in this post (the brown stain is enterovirus).
And you might like to look at some of the more interesting probiotics, like Clostridium butyricum or Prescipt-Assist, and consider whether these might be for you. Prebiotics are just as important, if not more important, than probiotics. Prebiotics are the food for the probiotic friendly bacteria. I got good results from the prebiotic called inulin — see this thread.
Have you had C Pneumoniae tested?I would try oxymatrine first. No doubt you have significant bacterial issues in your gut to address, but enterovirus can infect the stomach and intestines, and may be part of the picture of your gut ill health. So your gut might also benefit from oxymatrine.
You can see an image of enterovirus-infected gut tissues in this post (the brown stain is enterovirus).
And you might like to look at some of the more interesting probiotics, like Clostridium butyricum or Prescipt-Assist, and consider whether these might be for you. Prebiotics are just as important, if not more important, than probiotics. Prebiotics are the food for the probiotic friendly bacteria. I got good results from the prebiotic called inulin — see this thread.
Have you had C Pneumoniae tested?
No, I haven't.
My titers weren’t very high. Have you known people who tried inosine on here and did well? My Uric Acid is very low and it has been proven to raise it. I really need to get on a schedule and stick with it.No, I haven't.