BFS, Viral Infection, Hmm.

Information about how to manage or reduce the severity of BFS symptoms

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BFS, Viral Infection, Hmm.

Postby BFSBurger on December 10th, 2012, 8:14 pm

Many people here theorize that there is an unknown (or known) viral infection causing BFS. I dont know if its relevant, but I was diagnosed with acute cytomegalovirus infection last week, which is a herpes virus, which is in active stage right now. Both my IGG and IGM are high. CMV rarely causes symptoms, but for those who have never had it before, and get it later in life (nearing 40) it can cause mononucleosis syndrome which can wax and wane for months.

I ran across this post on another site, describing my symptoms verbatim, as well as the CMV diagnosis, right down to the left foot, calf, and eyelid:
http://ehealthforum.com/health/cmv-mono ... z2EfR5XaYy

My doc saw that and said lets give viral suppression a try.

The more I read about viral infections (especially those in the herpes family), the more akin it sounds to a BFS behavior. References to malfunctioning stress control, jacked up cortisol levels, adrenal fatigue all being tied to the viral syndrome. All heavily discussed here as symptom management techniques.

The fact that it can go dormant and reactivate with poor lifestyle choices or stress. For me, it may be CMV. For others it may be something else. Or a virus yet to be identified.

My doctor just prescribed me some Valtrex. Since EBF and CMV (and by the way there is also others like HHV6 and Papovirus) are all part of the herpes virus family, he's hoping the Valtrex may help suppress it long enough for my immune system to win the battle. So im going to start on it tomorrow.

Get this - Valtrex is not targeted for CMV ... but there are anecdotal reports that it can help. The real medication that stops this form of the herpes virus .. is Valganciclovir. Unfortunately that stuff has a black box label warning that is causes cancer in humans. However a ton of people take it quite often for Fibromyalgia and Chronic Fatigue Syndrome. Its becoming more and more common - and apparently there is a 75% cure rate by using it.

Now how about that?

Valganciclovir .... which is nothing more than an antiviral medication. Stops replication of viruses. Helps reverse Fibromyalgia and Chronic Fatigue Syndrome in 75% of cases? And BFS symptoms are so unbelievably similar to Fibromyalgia its scary. Maybe the Valganciclovir addresses more than Cytomegalovirus. Some other viruses. Last night I spoke to the guy who developed sarcoidosis after the HIV meds, he said he just got off the phone with a lady who also took them .... and was miserable for 3 years ... positive for CMV .... (HIV meds can reactivate a latent CMV infection) was told she had fibromyalgia .... and took the Valganciclovir and she said her life was turned upside down, in a good way. Never in her life felt so energetic and incredible. She was raving.

Valtrex only has something like a 30% chance it can limit CMV .... but i figure my goal right now is to empower my immune system. Im on Lysine and other herpes inhibiting supplements .... valtrex can only help.

I will update this thread if something crazy happens and all the twitching stops while im on it. 99% sure it wont. But hey ... im proud to be your guinea pig. Oink!
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS, Viral Infection, Hmm.

Postby Yuliasir on December 11th, 2012, 12:13 am

is that 75% cure reported in any official studies?

My family have its own herpes infection (who does not, would ask I) - at least my granny had it for sure and might give that to me easily... I was sick with herpetic tonsillitis all my childhood and young age, last bout at about 22 or so... Holy cow it is SO PAINFUL!!!!!!
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Re: BFS, Viral Infection, Hmm.

Postby chicagobfs on December 11th, 2012, 1:35 am

75% cure rate for what? Fibro CFS ? I would be very careful in reading all these info online. I did made my reaserch before starting taking antiviral and there was lots of information that actuall testes didn't prove these type of medication to help with these conditions. On the other hand, many people actually did felt better. All I can say is that I wish you all the best!
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Re: BFS, Viral Infection, Hmm.

Postby lcanela on December 11th, 2012, 3:36 am

Well, now that you mention it, I had mononucleosis which is caused by a herpes-like virus (15 years ago) and after that I felt really fatigued when it stoped.

Could it be related?

What are the supplements which help against herpes-like viruses?

Cheers.
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Re: BFS, Viral Infection, Hmm.

Postby BFSBurger on December 11th, 2012, 8:48 am

I will track down the percent reference again and post it here.

By the way how did actual tests prove that antivirals didn't help? Especially when you also say that people report feeling better. There is no test to prove Fibromyalgia even exists (aside from the person being in pain, and poking them in a few places with the doctors finger). Even fewer tests for Chronic Fatigue Syndrome. So it seems strange that anyone was able to prove that antivirals didn't work - especially if you heard (like I did) that most people *are* feeling better on them.

To me there's your 75% cure rate. All of us have normal blood work. Normal MRI's. Normal EMGs. So if we went on an antiviral im not clear how any test would prove or disprove its effectiveness. If we are jumping around saying how great we feel, I'd say that's sufficient proof. Technically in this case, you can't get "study data" unless its based on subjective user feedback.

ProBoost is a product that I believe is helping me immensely.
Supplements which help support your immune system (not just enhance it, but help manage it effectively)
Echinacea Goldenseal
Cats Claw (a very good immune supporting multi with tons of important things)
Garlic
Astralgus
Oregano Oil
Lysine inhibits herpes virus directly
Broccoli inhibits herpes virus directly

But the ProBoost Thymic Extract is the King of all this I think. I tried Transfer Factors targeted for CMV and i had a bad reaction - swollen glands, migraine.. it didnt feel healthy or normal. ProBoost and the ones above - i feel like a new man.

if you had Mono (from Epstein Barr virus) years ago (like I did) I wouldn't assume it is reactivated. You should get a test which differentiates between past and current/reactivated infection. I would also check for Cytomegalovirus IGM (not just IGG) and for HHV-6 (human herpes virus). I personally never had these BFS-like symptoms with the Epstein Barr version of mono. But with the CMV version of it, I sure as heck am. Assuming that's what it is. ( Mono is just the name of a syndrome caused by any various viruses. Its not always in reference to Epstein Barr.) My EBV is currently inactive as per bloodwork.
Last edited by BFSBurger on December 11th, 2012, 9:10 am, edited 1 time in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS, Viral Infection, Hmm.

Postby BFSBurger on December 11th, 2012, 8:52 am

Here's just one reference after about 12 seconds of googling. If I found this one so quickly, im sure there are more:

http://chronicfatigue.about.com/od/trea ... v6drug.htm

Could Valganciclovir Be An Effective Treatment for Chronic Fatigue Syndrome?
In a study testing the effects of the drug valganciclovir on chronic fatigue syndrome patients, 9 out of 12 patients reportedly experienced great improvement. The results of this study were reported at a scientific conference in Barcelona by Professor Jose Montoya of Stanford University in California. Valganciclovir is a powerful drug used to treat the human herpes virus (HHV-6). Multiple studies over the past few years have shown that a significant percentage of chronic fatigue syndrome patients test positive for HHV-6.

How strange is it that CFS/Fibro are treatable with an anti-viral? How strange is it that we share so many of their symptoms?

Several people mention that our immune systems can become taxed as we go through life. Taking on infections, pathogens, and then these herpes viruses which never fully go away. They stay latent, but only because our immune systems have to work to suppress them. Over time, and with multiple infections, our immune systems can become weakened. People can face problems that only immuno-compromised individuals usually face. Whereas one person gets Mono for 4 weeks, another one can suffer with reactivations and symptoms for months, and even years. The difference? Immune strength. I wonder what all our CD4 and CD8 (and other immune function) look like right now.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS, Viral Infection, Hmm.

Postby aztwitchy on December 11th, 2012, 12:00 pm

interesting....let us know how this goes for you.
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Re: BFS, Viral Infection, Hmm.

Postby chicagobfs on December 11th, 2012, 10:52 pm

I apprecite you being so passionate and I'm not saying your wrong I'm just saying to be carefull with reading stuff on Internet and also try some treatment before jumping to a conclusion ( which I don't think you did either:) I absolutely understand why you researching all possibilities
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Re: BFS, Viral Infection, Hmm.

Postby chicagobfs on December 11th, 2012, 10:57 pm

Also study your mentioned was not a blind study :wink:
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Re: BFS, Viral Infection, Hmm.

Postby Yuliasir on December 12th, 2012, 12:18 am

Chicagobfs made a right note.

In conditions like fibro etc., where psychological part (and effect of mind on the physical condition, including immune system, in general) plays not a least role, placebo effect should always be checked, othervise we might easily found ourselves eating potentially strong carcinogen while we can eat a sugar pill with the same good result. Placebo helps even when we know it is placebo ;)
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Re: BFS, Viral Infection, Hmm.

Postby BFSBurger on December 12th, 2012, 11:01 pm

Wow.

You guys are blowing me away right now. Can I ask why you're intentionally trying to be pessimistic? Do some googling on CFS and viral causes. Its all over the place. Everyone here theorizes that BFS is possibly viral related too.

CFS and Fibro have widespread viral theories right now, and people taking a viral medication are recovering. I know someone personally who also had CMV / HHV-6 and had all of our symptoms , developing slowly towards Fibro ... and she took the Valgacyclovir and had total remission.

Allow me to use your own logic against you: If *you* dont know the cause, then what grounds do you have to be pessimistic? Anything is possible as a cause, when you don't know the cause. You lack placebo based studies backing your pessimism. So based on your own thinking, you shouldn't be expressing pessimism. You have no evidence to support it. At least they have 9 examples of total remission to point to. And rather than post negative nancy empty theories with no data backing them yourselves, could you instead go to google and type these phrases in?

bfs and viral
cfs and viral
fibromyalgia and viral

I haven't even tried to look in pubmed yet. But I bet you guys haven't either :)
Last edited by BFSBurger on December 12th, 2012, 11:17 pm, edited 1 time in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS, Viral Infection, Hmm.

Postby BFSBurger on December 12th, 2012, 11:05 pm

This took me all of 12 seconds to find:

http://www.ncbi.nlm.nih.gov/pubmed/23182646

Chronic Fatigue Syndrome (CFS) and CRF: two "fatigue" syndromes with overlapping symptoms possibly related aetiologies.
In July 2010, at the Muscle Fatigue Meeting, I presented an overview of Chronic Fatigue Syndrome and Cancer Related Fatigue, emphasizing a critical interpretation of the potential association between Chronic Fatigue Syndrome and Cancer Related Fatigue and a newly discovered retrovirus: Xenotropic Murine Related Virus. Since this association was hotly debated at that time, I suggested at the Meeting that it was wrong and most likely due to the identification of the wrong virus culprit. Today, 20months after the Meeting, the first part of our prediction has turned out to be correct, as Xenotropic Murine Related Virus was shown to be a laboratory-created artefact. Still, the potential association of fatigue-syndromes with an infection (most likely viral) is sustained by a plethora of evidence and this overview will initially summarize data suggesting prior viral infection(s). The principal hypothesized mechanisms for both peripheral and central Chronic Fatigue Syndrome/Cancer Related Fatigue will be then summarized, also indicating plausible associations and triggering factors. All evidence accrued so far suggests that further research work should be performed in this interesting area and in order to identify an infectious agent for Chronic Fatigue Syndrome/Cancer Related Fatigue. One candidate RNA virus, Micro-Foci inducing Virus, will be described in this overview.

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Antibody to epstein-barr virus...in a chronic fatigue syndrome subset.
BACKGROUND:
A defined diagnostic panel differentiated patients who had been diagnosed with chronic fatigue syndrome (CFS), based upon *beep*/Carruthers criteria. This diagnostic panel identified an Epstein-Barr virus (EBV) subset of patients (6), excluding for the first time other similar "clinical" conditions such as cytomegalovirus (CMV), human herpesvirus 6 (HHV6), babesiosis, ehrlichiosis, borreliosis, Mycoplasma pneumoniae, Chlamydia pneumoniae, and adult rheumatic fever, which may be mistakenly called CFS. CFS patients were treated with valacyclovir (14.3 mg/kg q6h) for ≥12 months. Each patient improved, based upon the Functional Activity Appraisal: Energy Index Score Healthcare Worker Assessment (EIPS), which is a validated (FSS-9), item scale with high degree of internal consistency measured by Cronbach's alpha.
CONCLUSIONS:
There is prolonged elevated antibody level against the encoded proteins EBV dUTPase and EBV DNA polymerase in a subset of CFS patients, suggesting that this antibody panel could be used to identify these patients, if these preliminary findings are corroborated by studies with a larger number of EBV subset CFS patients.

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http://www.ncbi.nlm.nih.gov/pubmed/23080504

Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers.
Valganciclovir has been reported to improve physical and cognitive symptoms in patients with chronic fatigue syndrome (CFS) with elevated human herpesvirus 6 (HHV-6) and Epstein-Barr virus (EBV) IgG antibody titers. This study investigated whether antibody titers against HHV-6 and EBV were associated with clinical response to valganciclovir in a subset of CFS patients. An uncontrolled, unblinded retrospective chart review was performed on 61 CFS patients treated with 900 mg valganciclovir daily (55 of whom took an induction dose of 1,800 mg daily for the first 3 weeks). Antibody titers were considered high if HHV-6 IgG ≥1:320, EBV viral capsid antigen (VCA) IgG ≥1:640, and EBV early antigen (EA) IgG ≥1:160. Patients self-rated physical and cognitive functioning as a percentage of their functioning prior to illness. Patients were categorized as responders if they experienced at least 30% improvement in physical and/or cognitive functioning. Thirty-two patients (52%) were categorized as responders. Among these, 19 patients (59%) responded physically and 26 patients (81%) responded cognitively. Baseline antibody titers showed no significant association with response. After treatment, the average change in physical and cognitive functioning levels for all patients was +19% and +23%, respectively (P < 0.0001). Longer treatment was associated with improved response (P = 0.0002). No significant difference was found between responders and non-responders among other variables analyzed. Valganciclovir treatment, independent of the baseline antibody titers, was associated with self-rated improvement in physical and cognitive functioning for CFS patients who had positive HHV-6 and/or EBV serologies. Longer valganciclovir treatment correlated with an improved response. J. Med. Virol. 84:1967-1974, 2012. © 2012 Wiley Periodicals, Inc.

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Association of active human herpesvirus-6, -7 and parvovirus b19 infection with clinical outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
Frequency of active human herpesvirus-6, -7 (HHV-6, HHV-7) and parvovirus B19 (B19) infection/coinfection and its association with clinical course of ME/CFS was evaluated. 108 ME/CFS patients and 90 practically healthy persons were enrolled in the study. Viral genomic sequences were detected by PCR, virus-specific antibodies and cytokine levels-by ELISA, HHV-6 variants-by restriction analysis. Active viral infection including concurrent infection was found in 64.8% (70/108) of patients and in 13.3% (12/90) of practically healthy persons. Increase in peripheral blood leukocyte DNA HHV-6 load as well as in proinflammatory cytokines' levels was detected in patients during active viral infection. Definite relationship was observed between active betaherpesvirus infection and subfebrility, lymphadenopathy and malaise after exertion, and between active B19 infection and multijoint pain. Neuropsychological disturbances were detected in all patients. The manifestation of symptoms was of more frequent occurrence in patients with concurrent infection. The high rate of active HHV-6, HHV-7 and B19 infection/coinfection with the simultaneous increase in plasma proinflammatory cytokines' level as well as the association between active viral infection and distinctive types of clinical symptoms shows necessity of simultaneous study of these viral infections for identification of possible subsets of ME/CFS.

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How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS, Viral Infection, Hmm.

Postby chrissi on December 13th, 2012, 3:03 am

It is well known that CFS and Fibro are often triggered by a virus, especially when it falls onto a genetic predisposition. But as I already said, the doctor I have seen whose only specialisation for dozens of years is to diagnose and treat CFS, Fibro and related conditions , sais that from his experience, a viral CAUSE is very very seldom. The patients he sees usually have a life long history of somatization issues like IBS, often migrating pains, nausea, anxiety, OCD, affictions and so on. In many cases he finds a history of anxiety disorder or tendency to somatization. A big percentage of his patients habe been raised by ober- anxious parents, often with GAD or OCD, aggressive or addictive parents and often child abuse. Those pre- existing features seem to be a " good" basis for a system breakdown when a virus adds on top of this. BUT he said from his experience long term benefits from antiviral meds are disappointing. This is why he does nit use them any more. In my diagnose it is even mentiones that my disorder is virus triggered.
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Re: BFS, Viral Infection, Hmm.

Postby Yuliasir on December 13th, 2012, 4:13 am

Can I ask why you're intentionally trying to be pessimistic?


I personally have no doubts that my own BFS had started thanks to flu virus brought to our team by one non-responsible tourist. Plus my GAD plus my working stress.
But I would not like to eat potentially carcinogenic drug in order to relieve my condition which as I know could be relieved by other, more sparing means like diet, schedule, antianxiety treatment etc. maybe my case is much milder than yours or I just do not seek immediate cure.
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Re: BFS, Viral Infection, Hmm.

Postby PetrifiedGuy33 on December 14th, 2012, 12:48 am

chrissi wrote:It is well known that CFS and Fibro are often triggered by a virus, especially when it falls onto a genetic predisposition. But as I already said, the doctor I have seen whose only specialisation for dozens of years is to diagnose and treat CFS, Fibro and related conditions , sais that from his experience, a viral CAUSE is very very seldom. The patients he sees usually have a life long history of somatization issues like IBS, often migrating pains, nausea, anxiety, OCD, affictions and so on. In many cases he finds a history of anxiety disorder or tendency to somatization. A big percentage of his patients habe been raised by ober- anxious parents, often with GAD or OCD, aggressive or addictive parents and often child abuse. Those pre- existing features seem to be a " good" basis for a system breakdown when a virus adds on top of this. BUT he said from his experience long term benefits from antiviral meds are disappointing. This is why he does nit use them any more. In my diagnose it is even mentiones that my disorder is virus triggered.



interesting, I have had a few of those symptomns and i'll add another, a benign heart murmur, how lucky (or stupid) am I that all these conditions I think will kill me are apparently benign

however i have to add that my parents were not overanxious or aggressive at all and there was absolutely zero child abuse so I can't blame them!

May I ask what this doctor advises for these patients?

By the way you say CFS, I don't really get any cramps and i've had twitches for years and years so would I fall under this doctor's radar
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Re: BFS, Viral Infection, Hmm.

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