Dom's FMS/CFIDS Newsletter
I received this lovely picture from newsletter reader, McHarris.
January 10, 2011
21 TOPICS in this issue. Don't miss the PINK ones!
Readers comments in BLACK. My comments in TEAL.
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
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1. READERS WRITE
"Your website www.fms-help.com is great, as a diagnosed 20 years ago FMS sufferer, I look forward to learning more all the time."
"I've been getting the newsletters www.fms-help.com/newsletters.htm for years and appreciate them very much. Bless you for the valuable work that you do."
"So glad that you are holding your own. You are so dedicated to your fellow fibromites."
2. DISABILITY INFORMATION
From a reader--
"The Social Security and Disability Resource Center website (SSDRC.com) provides a detailed overview of how the federal disability system works (social security disability and SSI) and also provides answers to many questions that applicants typically have, but often have trouble finding answers to. For the most part, the site is based on the author's personal experience as a former disability-medicaid caseworker, and also as a former disability examiner for the social security administration. Hopefully, the information will be helpful. Here is a link to the site: http://www.ssdrc.com."
FROM DOM: Most interesting. See the list of impairments for receiving SSD at http://www.ssdrc.com/blog/2008/09/list-of-impairments-for-social-security.html.
3. MODESTY
FROM DOM: Last year I discovered Camisecret ("cleavage covers") and ordered online. However, Camisecret is now available in stores. I've seen them at Wal-Mart and also Bed, Bath and Beyond. The cost is $9.99 for 3 Camisecrets (white, black, tan). The ones in the store do not have the garter style clips (which I didn't like because they don't accomodate wider bra straps), but the store ones have a cloth loop with adjustable snaps - a better idea, I think. To learn more about Camisecret, go to www.camisecret.com. I really love them - they have expanded my wardrobe so much, now that I don't have to layer clothes to be modest - too warm for humid Florida weather most of the year.
4. DR. JAMIE DECKOFF-JONES JOINS THE WPI
From a reader--
http://www.prohealth.com/library/showarticle.cfm?libid=15796
http://networkedblogs.com/bLuda (Sunday, Dec. 12, 2010)
FROM DOM: XMRV research continues. For those not informed yet about the XMRV retrovirus/CFS connection, see www.fms-help.com/XMRV.htm for starters.
5. PAIN FREE
From a reader--
"In response to Topic #13, All Over Body Pain at www.fms-help.com/122210.htm - I am sending in what helped my pain….
Please tell her not to give up. We are all different, and each of us will be helped by something different. Our bodies respond to the same things in a different way. I started severe Chronic Fatigue Syndrome after a virus in 2001. Starting in 2002 I started having tender “spots” that rapidly become 100% all over body pain. I am sending her lots of support and prayers both for her pain and dealing with her husband.
1) Magnesium did wonders. My optimal dose is 450 mg per day, with only 200 mg calcium per day. I do drink milk, yogurt, etc so I get plenty of calcium in my diet. I know the “standard” Is to take twice as much calcium as magnesium. But I find that many people with fibromyalgia need the opposite: twice as much magnesium as calcium. Listen to your body. Too much magnesium with give you diarrhea, so you might want to build up to it over a month or so. I was having episodes of irregular heart palpitations. Doctor did stress test on treadmill and ultrasound on heart - all came back fine. So in my research I found that Calcium contracts muscles (including the heart) and magnesium relaxes muscles (including the heart). So it is very important that these 2 are in balance the way YOUR body needs them. Magnesium at 450 mg fixed my heart in 2 days…. Now it’s been years and no more heart palpitations. But I did not expect it to help my overall body pain…. But it improved dramatically. Another important point is to take Magnesium MALATE. If you have CFIDS or Fibromyalgia then the version called Magnesium CITRATE can be toxic to your nerves. Magnesium MALATE actually helps our condition.
2) The remaining overall body pain was fixed when I finally found a Chronic Fatigue Specialist in my area. He did blood work and now I take medicine for thyroid. My General Practitioner said my thyroid was fine. It’s a loooong diagnosis story but, my goodness, do I feel better on the thyroid medicine! The difference is that I take T3 not T4. I also take natural compounded, not synthetic. Within 1 month, I am 99% pain free. It mostly strikes if I get super-stressed and over-tired, which I try not to do.
3) I
did not “discover” Vitamin D3 until after my pain issue had
been resolved, but I believe it can be an important healer since it affects ALL
body systems. I take 6000 IU per day, and the current upper limit is believed to
be 10,000 IU. D3 has improved my general overall well being a lot, and
helped my immunity, too. A D3 deficiency can cause severe pain in bones. Be
careful not to overdose, but underdosing is just as catastrophic. Best to have a
blood test… mine was at the low end of “normal”. So my CFIDS doctor said to try
it and it made a large difference in how I feel. If you cannot get a test, it
should be pretty safe to take 2000IU per day and see how you feel. That amount
would not normally cause an overdose. If you increase the dose, then wait
a month before you increase another 1000 or 2000 IU. If you research D3, you
will be amazed how important it is for your body, including circulatory system,
moods, mental clarity, preventing cancer and diabetes, and osteoporosis,
etc. I am eternally grateful that my years of pain have been treated, and
I am sending blessings to everyone that they can find their correct
cure."
FROM DOM: I have been 95% pain free since 1996 after 14 years of extreme suffering www.fms-help.com/fibro.htm. Things that help me are listed at www.fms-help.com/what.htm. I am for anything that helps people with FMS/CFIDS to have a relatively functional life again.
6. NORWEGIAN XMRV STUDY
http://www.survivingmold.com/news/2010/12/xmrv-retrovirus-found-in-62-of-me-patients-tested-in-lillestr%C3%B8m-norway/ - Snippet: "XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway."
7. FROM ANNETTE WHITTEMORE OF THE WPI
From a reader--
http://wpinstitute.org/news/docs/WPI_XMRV_010111.pdf
Turning Today’s Discoveries Into Tomorrow’s Cures - January 1, 2011
XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant
The recent proclamation that “XMRV is not the cause of
CFS,” came from an individual who did
laboratory experiments to show how PCR
experiments can become contaminated. These results
have nothing to do
with the reality of a disease or the methods used by those who have detected
XMRV in the blood and tissue of patients found to be
infected. The positive studies, which
cannot be
explained away by PCR experiments, are those which have used multiple methods to
show that XMRV is a live replicating gamma retrovirus in human blood and
tissue samples using
the gold standard methods of viral isolation and
antibody testing, in addition to PCR.
Unsupported conclusions,
such as the one offered by the Wellcome Trust spokesman, often
create
sensational headlines but do little to move science forward. Authors of
the positive
XMRV studies have been extremely careful not to claim
causality, realizing that more scientific
research is required to make such
a statement. However, one fact still remains clear. Not one of
the negative studies changes the results of the scientific research done by
Lombardi et al., Lo et
al., Urisman et al., and Schlaberg et
al.
The WPI-led scientific study, which rigorously ruled out
contamination, revealed high
associations of gamma retroviruses with
physician-diagnosed CFS patients, using four different
methods of
detection. Recent commentary associated with the negative
research papers on
XMRV, which used only one testing method, claimed that
these studies proved that XMRV was
not the cause of human disease. On
the contrary, what the authors of the “contamination studies”
confirmed is
something that most experienced scientists already know; there are risks
associated
with using PCR if one does not properly control for
contamination. They cannot conclude that
other research groups had the
same problems or that “XMRV is not the cause of CFS”.
Most significantly,
the recent Retrovirology publications failed to address the most
important pieces of scientific evidence of human infection in the previous
XMRV studies,
including the fact that XMRV positive patients produce human
antibodies to gamma
retroviruses, XMRV integrates into human tissues,
and infectious virus has been cultured
from the blood of hundreds of
patients with a diagnosis of Chronic Fatigue Syndrome and
M.E. Humans
do not make antibody responses to mouse DNA sequences from
contaminated lab experiments. The Retrovirology studies only
point out that XMRV
research cannot be done in a mouse laboratory without
extreme caution and should not
rely solely on PCR
methods.
Many
researchers realize that the question of gamma retroviruses and human disease
cannot and
should not be dismissed lightly. Retroviruses integrate into their host’s DNA causing life
long
infection. Human retroviruses, such as HIV and HTLV-1,
are causative for immune
deficiencies, neurological disease and
cancer. Animal studies involving XMRV demonstrate that
the virus moves
quickly away from the blood to various organs within the body, such as the
spleen, lymph nodes, GI tract, and reproductive organs. This
helps to explain why the virus is
difficult to detect in blood even as it
replicates in the tissues of those infected. Other studies
using
mouse models of Murine Leukemia Virus infection, a close relative of XMRV, have
shown significant tissue involvement soon after infection, resulting in many
physical symptoms
of disease including cognitive deficits and immune
deficiencies, symptoms which are well
documented in patients with XMRV
associated diseases.
Many anxious patients have asked, “Where do we go from
here?” and “Is this the end of XMRV
research?” The answer to the
second question is an unequivocal “no.” As to the first question,
a
quick check of the status of ongoing research in various labs confirms
that the research groups
who have been working on XMRV over the past year
are still hard at work developing better
assays to check the world’s blood
supply for the new retrovirus, finding correlates of immune
dysfunction,
engaging in animal studies, extending their findings to other groups of
patients, and
in general, enthusiastically continuing their
research. They understand that novel scientific
discoveries, which
threaten current dogma, will continue to be challenged until the evidence can
no longer be denied. For instance, there are still those few who
question the fact that HIV is the
cause of AIDS. It took Nobel
Prize winner, Dr. Barry Marshall, 17 years and three trials in
which he
infected and then cured himself of H-Pylori associated ulcers, before the
medical world
would accept the fact that the bacterium causes the
disease. Today we are engaged in a new
battle to prove that
human gamma retroviral infections, such as XMRV, are underlying
pathogens in
neuro-immune diseases and untold cancers.
It is clear that
more research must be done to clarify the role of gamma retroviruses in human
disease. However, when a pathogen such as XMRV is found in over 80% of
those tested with
the same diagnosis, causality is clearly a reasonable
hypothesis that begs further scientific and
medical research. It is a
known fact that important questions of causality can often be answered
through well designed clinical trials. For those who have suffered for
years from these
debilitating diseases, novel drug trials cannot begin soon
enough.
WPI’s collaborative research projects are revealing the
infectious and inflammatory nature of
neuro-immune diseases, providing
strong evidence against the use of CBT and exercise therapy
as rational
“treatments” for those who are ill. Such knowledge underscores
the urgent need for
much more private and federal funding of biological
research to provide diagnostic tests and
effective drug therapies for the
millions who are ill, stop the spread of infectious retrovirus(es),
and end
the devastating cycle of disease.
Annette
Whittemore
President
Whittemore Peterson
Institute
8. POEMS ABOUT FIBROMYALGIA
FROM DOM: Here is a collection of poems sent in by newsletter readers with FMS/CFIDS. They well describe the suffering of this illness - see www.fms-help.com/poems.htm.
9. THE XMRV ISSUE IS FAR FROM OVER!
From a reader--
"Any 'reporting' citing the very flawed Retrocrapology I mean Retrovirology studies is very lazy reporting, just parroting a press release, really.
Here is Dr. Mikovits and Annette Whittemore on the local news: http://www.nevadanewsmakers.com/m/ - click on this link and scroll down to Wed., Dec. 22, 2010.
14. DR. AL LACY
FROM DOM: Dr. Al Lacy is my spiritual "dad." I was saved into God's eternal family on May 11, 1988 when Dr. Lacy preached a gospel message at my church in Tallahassee, FL. If you want to hear clear Bible preaching, listen to his sermons. A friend just sent me links to archives of Dr. Al Lacy's sermons: http://www.humyo.com/!#/FNdmFRM/Al%20Lacy/ and http://fundamentalbaptistsermons.com/sermonsLacy1.htm. There's some humor here too - Dr. Lacy is a talented ventriloquist and entertained the kids in the audience before his preaching using his dummy "Clyde Hyde." Corny, but funny banter, especially in person.
15. LYME DISEASE - "UNDER OUR SKIN"
From a reader--
"http://underourskin.com/blog/?p=916 - It ended up being Lyme Disease for me. I highly recommend everyone see this documentary "Under Our Skin." There are some trailers on www.youtube.com."
16. CRACKED HEELS
FROM DOM: I was having a lot of trouble with painful cracked heels, probably from wearing sandals most of the year in Florida. I used all kinds of creams and lotions that didn't help. I finally bought a Ped-Egg - a scraper thing that works very well if you use it gently and carefully, then follow with Heeltastic, intensive heel therapy. Voila! No more painful cracked heels. Both products are available at Wal-Mart.
17. V.I.P. DEFICIENCY
http://www.prohealth.com/mcs/blog/boardDetail.cfm?id=221 - discussion of using V.I.P. (vasoactive intestinal polypeptide) for people with MCS, mold, etc. - see Topic #11 above about Dr. Shoemaker's new site www.survivingmold.com.
18. PILLOW CASE DRESSES FOR AFRICA
From a reader--
100 Tips for Coping with Fibromyalgia &
Insomnia
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.
