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myalgic encephalomyelitis/chronic fatigue syndrome/epstein barr virus - what's the verdict?

cfs ebv chronic fatigue syndrome

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#1 biomimicry

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Posted 07 February 2017 - 08:37 PM


From anti-viral treatments with Valtrex, Valcyte, and Famvir to addressing the disease with B12 supplementation to correct methylation, has anyone ever gotten better from this disease?

 

here's a rundown on what I've been going through since my diagnosis:

I’m 26 years old and what began as latent fatigue throughout the day that was manageable to an extent, turned into an illness that’s left me homebound with nothing else to do but research what can be done to help. I’ve tried seeing a CFS specialist and gone through prescriptions of antivirals to bring down my EBV levels, and at the 3 month mark with no real progress, I left unsatisfied and in denial that my CFS may be attributed to another illness.

 

My course of thought behind this was A.) this disease is bullshit. B.) I’m a young male and this is something that mostly affects women. C.) CFS is very “hot” with naturopaths ready to make a quick buck on someone who is genuinely sick. This refusal to accept my condition just delayed the inevitable, of course and now I’m back to where I started, perhaps even worse off now and am only starting again to feel the aching joints along with the brain fog that I initially complained about. Right now, I’m trying freddd’s methylation protocol, Ibudilast, and a daily nootropic stack (alpha gpc, p21, noopept, piracetam) that I’ve conceived to lift the fog.

 

I was wondering what anyone here with CFS is currently taking to help with their CFS. I’m clueless as to how I got sick in the first place, as it just came out of nowhere with some pains that I attributed to costochondritis or being sedentary, now it’s systemic. I move and I hear an avalanche of joint popping that makes me feel like an 80 year old.

 

I’m mainly interested in what anyone else takes to bring down inflammation from joint pain and if you’re taking anything to bring down the viral titers that isn’t prescribed.

 

I'm fed up with this illness, it's cost me my job and I feel completely abandoned by every medical practitioner that I explain my symptoms to.


Edited by biomimicry, 07 February 2017 - 09:05 PM.


#2 Psilociraptor1

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Posted 29 March 2017 - 04:15 PM

Sorry you have to go through this. CFS is a symptomatic description as are most "autoimmune" and inflammatory conditions. As such it is very hard to find a corresponding single "cause" and this has been my frustration with the specialty approach to medicine. Always assuming that research will find a common etiology for a symptom complex. For example look at Guillaine-barre syndrome. This is one of the most recognized autoimmune diseases to be caused by infection and there are a handful of infections that can cause it. The only commonality between them is that most are neurotropic microorganisms that use similar strategies of biomimicry to evade host immunity and parasitize the mammalian nervous system. The consequence is that this biomimicry induces cross-reactive antibodies to neural antigens. So it's more effective to consider Guillaine-barre an autoimmune symptom than a disease imo and it really has no place in the realms of neurology. Likewise virtually all symptoms of acquired chronic illnesses from arthritis, to demyelinating nerve disorders, to tumors have been ascribed to infections and the etiology is only really difficult to understand when you're working the disease backwards. This is why interest in microbiome research has been exploding. And I think what it's going to come down to is understanding the ecological dynamics. As described above, many of the symptoms can be related back to the niche that's being occupied and the particular persistence strategies than being unique to a single organism. Coinfections need to be considered as well. EBV might be associated with CFS because it's causative, or simply because it's been reactivated by another parasite. Virtually all parasites have to create some level of immune suppression or distortion to exist. So it's incorporation into the human ecosystem comes with it's own set of synergistic and antagonistic relationships just as any immigrant into a forest ecosystem does. Reactivation of certain latent viruses might be one of the consequences. And consequently taking antivirals won't necessarily reduce your symptoms (though it might to some degree).

 

So start the search broad and look for fatiguing illnesses that cause cognitive problems and joint pains rather than working the disease backwards from CFS. The different fields of research don't always communicate effectively and sometimes your answers come from unexpected places. Unfortunately, those are very common symptoms but fortunately there are some very common causes. Aka Lyme disease and other tick-borne illnesses which collectively contribute to over a half-million or more chronic fatiguing, rheumatic and neurological diseases every year in the US. I personally suffer from Lyme and if you want to give me a complete list of symptoms we can discuss it... but fatigue, chest pains, arthritis, cognitive issues, "guillaine-barre syndrome" are all things i've had as a result. In this case I take Japanese Knotweed per Buhners protocol which has been very very helpful. It is both antiviral and antibacterial so you might kill two birds with one stone. Hence one of my many biases towards plant medicines. You might also consider investigating your house for contamination with mold or bacteria. I had that issue too and got sick shortly moving into the house. Did it reactivate latent lyme disease? Did it prevent me from healing by damaging my immunity? Or was it a totally irrelevant coincidence? Hard to say but everything affects everything else so i don't tread lightly there. But that brings me to a point. Let's say EBV is causal of the symptoms, but what causes poor EBV clearance? There's always another cause beneath the cause. Chronic illness is likely continually peeling away an onion. Another microorganism might lie underneath the EBV as discussed above. And immune toxicity from some chemical exposure might lie under that. Or bad dietary habits, or chronic stress and so on. You have to really look at the human as a non-linear ecosystem and treat it as an individualized whole. Some of the recent and older research for example has found everything from dental spirochetes, to commensal fungi, to syphilis and viruses in Alzheimers plaques. Addressing dental health might be as important as an antifungal.

 

Hope my ramble has at least sparked something. People do get better from this nonsense but it usually depends on their own persistence to learn and experiment. Keep pushing and best of luck


Edited by Psilociraptor1, 29 March 2017 - 04:20 PM.


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#3 stolpioni

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Posted 15 October 2017 - 11:40 PM

You may have a mold illness called CIRS. Check out the documentary "Moldy". It's free.







Also tagged with one or more of these keywords: cfs, ebv, chronic fatigue syndrome

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