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Posted on 02/22/2014 7:00:16 PM PST by Seizethecarp
Chronic fatigue syndrome (CFS) is an often-debilitating condition of unknown origin. There is a general consensus among CFS researchers that the symptoms seem to reflect an ongoing immune response, perhaps due to viral infection. Thus, most CFS research has focused upon trying to uncover that putative immune system dysfunction or specific pathogenic agent. However, no single causative agent has been found. In this speculative article, I describe a new hypothesis for the etiology of CFS: infection of the vagus nerve. When immune cells of otherwise healthy individuals detect any peripheral infection, they release proinflammatory cytokines. Chemoreceptors of the sensory vagus nerve detect these localized proinflammatory cytokines, and send a signal to the brain to initiate sickness behavior. Sickness behavior is an involuntary response that includes fatigue, fever, myalgia, depression, and other symptoms that overlap with CFS. The vagus nerve infection hypothesis of CFS contends that CFS symptoms are a pathologically exaggerated version of normal sickness behavior that can occur when sensory vagal ganglia or paraganglia are themselves infected with any virus or bacteria.
(Excerpt) Read more at medical-hypotheses.com ...
The only reason I asked about the seizure connection is because I had never paid much attention to what the vagus nerve does until I was DX’ed with partial seizures in October. Since then I have read a lot about the vagus nerve.
“And one of the sneakiest and most mutatable infections comes from Chronic Lyme Disease—an infection the CDC is loathe to discuss.”
Like many other conditions, CFS is a “diagnosis of exclusion” meaning that you get the CFS Dx only after all other known testable conditions have been excluded and you still meet the CDC 1994 Fukuda criteria.
Because the symptoms overlap, people with Lyme Disease are frequently misdiagnosed with CFS when false negatives (frequent) fail to identify Lyme Disease or they are never tested for Lyme.
If you have Lyme Disears, you do NOT have CFS, although you will be chronically fatigued until treated with antibiotics. Lyme is a bacterial infection.
Wiki on Lyme (great pics of the “bullseye” tick-bite symptom):
http://en.wikipedia.org/wiki/Lyme_disease
“Lyme disease (Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.[1][2][3] Borrelia burgdorferi sensu stricto[4] is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer.”
“The late disseminated stage is where the infection has fully spread throughout the body. Chronic neurologic symptoms occur in up to 5% of untreated patients.[24] A polyneuropathy that involves shooting pains, numbness, and tingling in the hands or feet may develop. A neurologic syndrome called Lyme encephalopathy is associated with subtle cognitive problems, such as difficulties with concentration and short-term memory. These patients may also experience fatigue.[31] However, other problems, such as depression and fibromyalgia, are no more common in people who have been infected with Lyme than in the general population.
“Chronic encephalomyelitis, which may be progressive, can involve cognitive impairment, weakness in the legs, awkward gait, facial palsy, bladder problems, vertigo, and back pain. In rare cases untreated Lyme disease may cause frank psychosis, which has been mis-diagnosed as schizophrenia or bipolar disorder. Panic attacks and anxiety can occur; there may also be delusional behavior, including somatoform delusions, sometimes accompanied by a depersonalization or derealization syndrome, where the patients begin to feel detached from themselves or from reality.”
Glad to share some accumulated findings after fighting my CFS for 13 years (and having my PCP tell me last week that I am “just depressed”)
CFS is the Rodney Dangerfield of medical conditions, (”can’t get no respect”) despite extensive new research that many MDs still chose to ignore.
Treatment of Lyme with antibiotics does not always solve the problems associated with Lyme. The spirochetes(distant relatives of syphillis) hide in something called biofilm and migrate to almost any organ and masquerade as any number of diseases including, but not limited to, Parkinsons. Lyme literate docs all over the country are losing their licenses and being stifled in their attempts to treat Lyme. In face, the CDC has now grudginly admitted that over 300, 000 new cases a year are a likely probablility. That is more than AIDS being diagnosed. Unfortunately, since it is not spread by peoples choices, like most AIDS and Hep C, cases, the cause has not been championed by the pc crowd—in which case, real research maight ensue.
“Lyme literate docs all over the country are losing their licenses and being stifled in their attempts to treat Lyme.”
Link please.
In my experience and observation it is almost impossible to get an MDs ticket pulled and MDs themselves won’t go near anything that would cause them to lose their license unless it is some money-making scheme.
Apparently “vagus nerve stimulation” is now treatment for epileptic seizures:
Wiki page:
http://en.wikipedia.org/wiki/Vagus_nerve_stimulator
“Little is understood about exactly how vagal nerve stimulation modulates mood and seizure control but proposed mechanisms include alteration of norepinephrine release by projections of solitary tract to the locus coeruleus, elevated levels of inhibitory GABA related to vagal stimulation and inhibition of aberrant cortical activity by reticular system activation.
“Randomized control trials indicated that thirty-percent of patients would have a greater than fifty-percent reduction of seizures.”
Here is a link to the numerous CDC fact sheets on Lyme Disease and related links:
http://www.cdc.gov/lyme/toolkit/index.html
I have read on the epilepsy boards of many people having great results from VNS after suffering from partial seizures for years.
I've suspected that I suffer from CFS for the past several years now although all the normal type of tests that are usuall done thru blood work show me to be healthy and I am extremely active sports wise.
Lethargy, slight loss in regular muscular coordination and at times, depression and the sensation that I'm thinking thru a fog.
It's just weird and I really can't explain it in words......
The symptoms started after I had been on Celebrex for about a year and a half so I stopped taking it. although my cholesterol was 71/129, my doctor prescribed simvastatin but I only took that briefly after reading up on it.
So basically, all I'm taking now is excedrin or an occasional Ibuprofin for muscular and joint pain from my sports activities.......
“Link please.”
HULU “Under Our Skin” Lengthy, but worth it if you or a loved one has been diagnosed.
The CDC wouldn’t even admit that Lyme was a factor in the Southern states until recently. I went to my GP a couple of years ago and told him I thought I had Lyme. He kind of chuckled, told me one doesn’t get it in the south according to the CDC but said he would send my samples off if it would make me feel better. He called me the next week to let me know that I also had co-infections that went with even though I had no telltale rash to start with(I’ve learned since, from my LLD, that at least 50% of those infected do not have that rash which means they don’t get the necessary treatment early on.)
http://www.dearpharmacist.com/2013/06/11/lyme-disease-and-bartonella-more-common-than-you-think/
Yes, my lyme disease doctor says chronic fatigue is really chronic lyme disease helped with antibiotics and many other things.
I am glad you are getting good treatment for your TIAs!
“I’ve suspected that I suffer from CFS for the past several years now although all the normal type of tests that are usuall done thru blood work show me to be healthy and I am extremely active sports wise.”
IMO if you are still able to be “extremely active in sports” then you probably don’t have CFS as more narrowly defined in recent research.
Most of the best clinicians prefer the Canadian Consensus Criteria (CCC) of 2001 over the CDC 1994 Fukuda standard.
Under Fukuda “post exertional malaise” (PEM) is OPTIONAL and only one of several symptoms which, if there are enough of them (5 IIRC) allow a CFS diagnosis.
Under the CCC, PEM is MANDATORY and the signature symptom of the CFS disease. So if you do NOT suffer debilitating exhaustion (not just “fatigue”) that starts from 24-48 hours after strenuous or even moderate exercise, then you don’t have CFS (aka ME: myalgic encephalomyelitis).
Like most folks with “chronic fatigue” you probably don’t have “chronic fatigue SYNDROME.”
Here is a link to the CCC:
http://www.cfids-cab.org/MESA/ccpccd.pdf
Here is a link to a 2013 letter from the top international CFS clinicians and researchers begging the US Gov’t to affirm the CCC and NOT to go off and adopt another wishy-washy updated definition of Fukuda:
http://www.name-us.org/Case%20Definition%20Letter%2010-25-13.pdf
Looks like only one MD had his license temporarily suspended and it wasn’t for his Lyme treatments but for his failure to properly INFORM his patients that his treatments were “unorthodox.” This most likely means that the treatments were experimental and not that requires “informed consent” from the patients, which apparently wasn’t given to them.
http://en.wikipedia.org/wiki/Under_Our_Skin
“The board found that Jemsek had departed from standard medical practice and had failed to inform patients that his treatments were unorthodox; his medical license was suspended with stay, allowing him to continue practicing medicine.[6] Facing a lawsuit from an insurance company, Jemsek declared bankruptcy and closed his medical practice.”[7]
I have long suspected such a connection because I have a truly screwy set of CFS like symptoms that seem to respond well to Nexium....
I’m glad that you stood up to your GP, got tested and got treatment! This is still a dream for people with ME/CFS.
Thanks, but I was never having TIA’s. The seizures mimiced TIA’s. I was having undiagonised seizures all along.
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