CFS – F.I.G.H.T for your health! http://lymebook.com/fight Linda Heming describes her Lyme disease healing journey Wed, 06 Nov 2013 05:54:37 +0000 en-US hourly 1 https://wordpress.org/?v=4.9.25 Lyme is reaching EPIDEMIC proportions! http://lymebook.com/fight/lyme-is-reaching-epidemic-proportions/ http://lymebook.com/fight/lyme-is-reaching-epidemic-proportions/#respond Sat, 21 May 2011 05:02:22 +0000 http://lymebook.com/fight/?p=2474

Linda’s comment:…WE MUST start standing up and demanding that Lyme be addressed as the epidemic it is worldwide.  Enough is enough.  We MUST do what we can to stop the suffering and deaths that this horrific disease brings…..While the CDC is pushing the Zombie VACCINES, they need to be pushing for answers for this horrific disease.  I’m sick and tired of the FOLLOW THE MONEY mentality we have become use to saying.  STAND UP FOLKS AND LET US BE HEARD…..
 
I have suggested this before, but I want to stress it again.  Think about this….IF thousands of us send demand letters to the CDC on “lime green” 8 x 10 paper, certified mail, return receipt to the CDC, FDA, the PRESIDENT, etc., etc., etc. they would have to pay attention.  PLUS, any certified/return receipt mail received by our US Federal office, MUST be given priority handling according to their “Palm” (regulations for US government office staff)….if it isn’t sent certified/registered then they can simply throw them away, but certified/registered mail brings on a whole new meaning.  It would really excite me if a minimum of 10,000 were mailed!!  Think about it…..then…..JUST DO IT!!

Excerpt:
I live in Ontario and I have Lyme disease. I contracted Lyme here. I was misdiagnosed for four year and I have chronic late stage Lyme. I am one of thousands of people who have this contracted disease in this country. This disease is like AIDS. It affects your immune system and every part of your body and is incurable. It will and can kill a person. Like AIDS it requires long term treatment but with antibiotics not antivirals since it is a bacterial infection.

The most common way of contracting Lyme is through a tick bite but there is science showing it can be passed on through birth and through breast feeding.(1,2) The bacteria that causes Lyme disease has also been discovered in semen although there have yet to have studies on if it is sexually transmitted although the bacteria is a Spirochete a relative to syphilis.(3) We also don`t screen the blood or organ donor supply so it may be possible to contract the disease this way too.(4)

]]>
http://lymebook.com/fight/lyme-is-reaching-epidemic-proportions/feed/ 0
Acute transverse myelitis in Lyme neuroborreliosis http://lymebook.com/fight/acute-transverse-myelitis-in-lyme-neuroborreliosis/ http://lymebook.com/fight/acute-transverse-myelitis-in-lyme-neuroborreliosis/#respond Fri, 02 Jul 2010 06:54:15 +0000 http://lymebook.com/fight/?p=1282 Full article: http://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=20505978&retmode=ref&cmd=prlinks

Excerpt:

INTRODUCTION: Acute transverse myelitis (ATM) is a rare disorder
(1-8 new cases per million of population per year), with 20% of
all cases occurring in patients younger than 18 years of age.
Diagnosis requires clinical symptoms and evidence of inflammation
within the spinal cord (cerebrospinal fluid and/or magnetic
resonance imaging). ATM due to neuroborreliosis typically
presents with impressive clinical manifestations.
CASE PRESENTATION: Here we present a case of Lyme
neuroborreliosis-associated ATM with severe MRI and CSF findings,
but surprisingly few clinical manifestations and late conversion
of the immunoglobulin G CSF/blood index of Borrelia burgdorferi
sensu lato.
CONCLUSION:
Clinical symptoms and signs of neuroborrelial ATM may be minimal,
even in cases with severe involvement of the spine, as shown by
imaging studies. The CSF/blood index can be negative in the early
stages and does not exclude Lyme neuroborreliosis; if there is
strong clinical suspicion of Lyme neuroborreliosis, appropriate
treatment should be started and the CSF/blood index repeated to
confirm the diagnosis.

]]>
http://lymebook.com/fight/acute-transverse-myelitis-in-lyme-neuroborreliosis/feed/ 0
Chronic Fatigue Sufferers May Be Asked to Avoid Donating Blood http://lymebook.com/fight/chronic-fatigue-sufferers-may-be-asked-to-avoid-donating-blood/ http://lymebook.com/fight/chronic-fatigue-sufferers-may-be-asked-to-avoid-donating-blood/#respond Fri, 18 Jun 2010 06:39:27 +0000 http://lymebook.com/fight/?p=1211 Linda’s comment:   WHY are they not telling Lyme patients to avoid donating blood?

Excerpt:

There’s been a flurry of activity by experts trying to suss out if the virus XMRV, which has been associated with chronic fatigue syndrome, poses a threat to the U.S. blood supply.

On Friday,  Louis Katz, executive vice-president of medical affairs at Mississippi Valley Regional Blood Center in Davenport, Iowa, and a member of the AABB task force studying the issue, gave his own latest assessment of the situation: People who have been diagnosed by a doctor with CFS should not donate blood, at least not at this point. (The AABB is an association that includes the facilities that collect virtually all of the U.S. blood supply.)

Last October, a paper in the journal Science linked XMRV — first discovered in 2006 — to CFS, which affects an estimated 17 million people worldwide. Since then, public health officials have been racing to learn more. Although it still isn’t yet known whether XMRV causes CFS or any other disease, there are concerns that the virus might be transmitted through blood donations.

]]>
http://lymebook.com/fight/chronic-fatigue-sufferers-may-be-asked-to-avoid-donating-blood/feed/ 0
Biomarkers in Chronic Fatigue Syndrome http://lymebook.com/fight/biomarkers-in-chronic-fatigue-syndrome/ http://lymebook.com/fight/biomarkers-in-chronic-fatigue-syndrome/#respond Thu, 10 Jun 2010 05:29:41 +0000 http://lymebook.com/fight/?p=1186 Full article: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0010817

Excerpt:

Chronic Fatigue Syndrome (CFS) studies from our laboratory and
others described decreased natural killer cell cytotoxicity
(NKCC) and elevated proportion of lymphocytes expressing the
activation marker, dipeptidyl peptidase IV (DPPIV) also known as
CD26. However, neither these assays nor other laboratory tests
are widely accepted for the diagnosis or prognosis of CFS. This
study sought to determine if NKCC or DPPIV/CD26 have diagnostic
accuracy for CFS.

]]>
http://lymebook.com/fight/biomarkers-in-chronic-fatigue-syndrome/feed/ 0
Explaining Unexplained Illnesses by Martin Pall, PhD http://lymebook.com/fight/explaining-unexplained-illnesses-by-martin-pall-phd/ http://lymebook.com/fight/explaining-unexplained-illnesses-by-martin-pall-phd/#respond Mon, 15 Mar 2010 04:26:30 +0000 http://lymebook.com/fight/?p=925 Linda’s comments:  I attended a lecture by Dr Martin Pall regarding NO/ONOO and found it extremely interesting.  You can google him and get a large number of articles by Dr Pall.  Well worth your reading time.

Excerpt:

We are excited to present information from the forthcoming book by Martin L. Pall, PhD, who shows that all these conditions – and probably many others – involve the same key biochemical response: elevated levels of nitric oxide (NO) and its oxidant product peroxynitrite (ONOO), which initiate a biochemical vicious cycle. Although the mechanisms underlying this ongoing NO/ONOO cycle are well-documented, Dr. Pall presents new information about how this cycle interacts to produce patterns of symptoms. The theory elegantly answers many questions, including:

  • If CFS, MCS, FM, PTSD and GWS have a common biochemical link, why is there such a variety of symptoms?
  • Why do symptoms vary among sufferers of the same condition?
  • What roles do infection, chemical exposure, physical trauma, and severe psychological stress play?
  • How do short-term stressors initiate chronic illness?
  • What are the common symptoms and signs?
  • What is an approach that corrects the cause, rather than treating the symptoms?
  • How does the biochemistry of the NO/ONOO cycle produce chronic illness?
  • What are the principles underlying the NO/ONOO cycle mechanism?
  • Can the NO/ONOO cycle explain other previously unexplained properties of these illnesses?
  • How might 14 additional illnesses/diseases also be caused by the NO/ONOO cycle etiology?
  • And many more…

All this is backed up with more than 1,500 references to scientific literature.

Key Points

Symptoms are generated by elevated levels of nitric oxide, peroxynitrite and several other consequences of the NO/ONOO cycle, such as elevated activity of NF-kappa B, superoxide, inflammatory cytokines and activity of two transmitter systems, the vanilloid receptor and the NMDA receptor. Therapy should focus on down-regulating the NO/ONOO cycle biochemistry. Peroxynitrite is a potent oxidant, and it or its products initiate oxidative chain reactions, causing damage to both proteins and DNA. When its levels are sufficiently elevated, it can cause programmed cell death (apoptosis), an important mechanism in neurodegenerative diseases. Peroxynitrite attacks several of the important proteins in mitochondria, acting along with superoxide and nitric oxide in lower energy metabolism. Such energy metabolism dysfunction lowers the availability of ATP, the energy currency in cells, and is an important part of NO/ONOO cycle biochemistry.

Much of the mechanism of the NO/ONOO cycle is local, impacting one tissue but not necessarily impacting an adjacent tissue. Different people suffering from these illnesses may have distinct tissues impacted by NO/ONOO cycle biochemistry, and this variation in tissue distribution leads to an almost infinite variation of symptoms and signs. This is proposed to be responsible for the extraordinary variation in symptoms and signs reported in comparisons of one patient with another.

Martin L. Pall, PhD, BA Conditions caused by the NO/ONOO cycle are best treated by using agents that are expected to down-regulate NO/ONOO cycle biochemistry. At least 30 therapeutic agents or classes of agents are available today that are expected to down-regulate cycle biochemistry. Of these 30, clinical trial studies have been performed on 12, and all 12 show evidence of efficacy in treatment of these multisystem diseases or closely related illnesses. Clinical observations and/or anecdotal reports suggest that six additional agents or classes of agents are also effective in treatment.

]]>
http://lymebook.com/fight/explaining-unexplained-illnesses-by-martin-pall-phd/feed/ 0
Secrets of Novel Retrovirus Unfolding http://lymebook.com/fight/secrets-of-novel-retrovirus-unfolding/ http://lymebook.com/fight/secrets-of-novel-retrovirus-unfolding/#respond Wed, 24 Feb 2010 05:46:08 +0000 http://lymebook.com/fight/?p=873

Videos from the Conference:
http://www.ifarablo g.org/

http://www.medpaget oday.com/ MeetingCoverage/ CROI/18610
CROI: Secrets of Novel Retrovirus Unfolding

By Crystal Phend, Senior Staff Writer, MedPage Today
Published: February 21, 2010

SAN FRANCISCO – The mystery surrounding a retrovirus recently implicated
in prostate cancer and possibly chronic fatigue syndrome is beginning to
yield clues.

The virus, known as XMRV, has been confirmed to replicate primarily in
reproductive organs and lymphoid tissue, according to a primate study
reported at the Conference on Retroviruses and Opportunistic Infections.

A second study found markers that could be the key to developing an
assay for the large scale epidemiologic studies needed to determine how
widely the virus has penetrated in the population, and what effect it has.

“We’re at a very, very early stage working with this virus,” said
conference vice-chair John Coffin, PhD, of Tufts University in
Boston.Action Points
Note that these studies were published as abstracts and presented at a
conference. These data and conclusions should be considered to be
preliminary until published in a peer-reviewed journal.
He likened it to the early days of HIV research, when scientists
scrambled to make sense of the virus, but cautioned that has yet to be
any clear evidence linking it to disease.

XMRV burst onto the scene four years ago when researchers doing a broad
sweep for viruses in prostate cancer samples turned up evidence of a
retrovirus that resembled the murine leukemia virus, earning it the
abbreviation xenotropic murine leukemia-related virus (XMRV).

“The similarity [in genetic sequence] is so striking that although we
don’t know the details we have to assume it’s coming from mice,” Stephen
Goff, PhD, of Columbia University in New York City, told MedPage Today.

The genetic sequence of all XMRV isolates tested across the country, and
across diseases, show so little divergence that the virus must have only
recently jumped to humans — likely from a point source and with limited
numbers of replication cycles during transmission, Goff said in a
plenary lecture on XMRV at the conference.

This implies that a vaccine might be much easier to develop than for
HIV, he explained at a press conference.

However, while this class of retroviruses appears to be characterized by
lifelong infection that cannot be cleared by the immune system, there’s
no clear proof yet that XMRV causes illness or the diseases it’s been
linked to, he emphasized.

Even the links to prostate cancer and chronic fatigue syndrome are
controversial, with centers reporting anywhere from 0% to 23% and 0% to
67% prevalence in tested cases, respectively, Goff noted.

To learn more about how the virus might interact with the human immune
system, scientists at the Cleveland Clinic, Yerkes National Primate
Research Center at Emory University, and Abbott Diagnostics collaborated
on an animal model.

Prachi Sharma, PhD, of Emory, presented part of the results involving
monkeys.

She reported that acutely infected monkeys tested positive for virus
replicating in a number of tissues.

Chronic infection, though, appeared largely limited to CD4+ T cells in
lymphoid organs — spleen, lymph nodes, and GI tract — as well as in
reproductive organs, including prostate, testes, ovaries, vagina, and
cervix.

Other experimental lab studies have shown the virus to be androgen and
hormone responsive, which bears on the cell types in which it will be
found, Goff said.

It was notable that the monkeys exhibited no visible symptoms or fever
when infected, said John Hackett, Jr., PhD, of Abbott Diagnostics in
Abbott Park, Ill.

He reported the group’s efforts to develop assays to detect XMRV infections.

In the monkeys, antibodies to gag p30, env gp70 and env p15E were observed.

The researchers were also able to show, for the first time, the
existence of antibodies to multiple XMRV proteins in humans.

However, they occured in only three of 2,851 human blood samples.

Detection in humans has proven challenging, but whether this reflects
the virus’ life cycle, a combination of viral properties and the length
of time between infection and disease, or some other factor is unclear,
Hackett said.

“Part of it is the ability to identify it to begin with,” Hackett told
MedPage Today. “You could argue we haven’t been looking for it.”

Sharma’s study was supported by Abbott Diagnostics and a grant from the
National Institutes of Health.

Hackett reported conflicts of interest with Abbott Diagnostics.

Goff reported support from the Howard Hughes Medical Institute and the
Department of Defense Prostate Program.

Primary source: Conference on Retroviruses and Opportunistic Infections

Source reference:
Goff S “Mouse to Man? XMRV and Human Disease” CROI 2010; Abstract 132.

Additional source: Conference on Retroviruses and Opportunistic Infections
Source reference:
Qui X, et al “XMRV: Examination of Viral Kinetics, Tissue Tropism, and
Serological Markers of Infection” CROI 2010; Abstract 151.

Additional source: Conference on Retroviruses and Opportunistic Infections
Source reference:
Sharma P, et al “Organ and Cell Lineage Dissemination of XMRV in Rhesus
Macaques during Acute and Chronic Infection” CROI 2010; Abstract 150 LB.

]]>
http://lymebook.com/fight/secrets-of-novel-retrovirus-unfolding/feed/ 0
The prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome http://lymebook.com/fight/the-prevalence-of-xmrv-in-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome/ http://lymebook.com/fight/the-prevalence-of-xmrv-in-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome/#respond Tue, 24 Nov 2009 07:24:01 +0000 http://lymebook.com/fight/?p=544 The Whittemore Peterson Institute (WPI) has recently published a research study revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS, or what has most recently been called, X associated neuro-immune disease (XAND).

In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily agreed to allow Viral Immune Pathology Diagnostics (VIP Dx, at www.vipdx.com) to begin offering the identical tests that have been extensively validated using the same technology developed by Drs. Vince Lombardi and Judy Mikovits and their colleagues as reported in Science. [That is, VIP Dx, formerly RedLabs USA, indicates it has licensed the XMRV test technology.]

VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune diseases, the Whittemore family made the decision to support the lab in Reno.

“Our family made it possible for the lab to not only continue delivering diagnostic tests to doctors, but also help the WPI bring cutting edge biomarkers of disease to this field of medicine, such as the tests for XMRV,” said Annette Whittemore, Founder and President of WPI. “Tests conducted for XMRV, and other tests that support the diagnostic process in this field, will support the continuation of vital work at WPI through our donation of all of our net proceeds.”

XMRV test acceptance commenced at VIP Dx this month. For more information about the XMRV test kit, visit www.vipdx.com.

]]>
http://lymebook.com/fight/the-prevalence-of-xmrv-in-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome/feed/ 0