DOM'S FMS/CFIDS NEWSLETTER
December 22, 2008
Topics are in PURPLE. DON'T MISS RED TOPICS (IMPORTANT!) Readers comments are in BLACK. My comments are in TEAL.
1. READERS WRITE
right down to the repetitive stress injury diagnosis!"
"I am tired of losing my life, the things I like to do [holiday preparations] becoming chores instead of joys."
"This illness really gets me down sometimes and I wonder how can I keep going, but I love my job and if I didn't have it I think depression would hit very quickly. I feel sorry for my other half, he must wonder sometimes how nice it would be to have a well wife."
"I appreciate your website www.fms-help.com. It validates so much of my experience with these crummy conditions."
"I have fibromyalgia and have been referred to your site on more than one occasion. I have found your site to be probably the most helpful and most informative site I have ever seen on FM."
"I just want to add how much I appreciate all your hard work and heartfelt, educational letters you send out to everyone on your list. Amazing what I"ve learned in the last year--and have had FMS, CFS, and other related illnesses for 30 plus years."
| "I have had CFIDS for 15 yrs. I am gradually getting worse - especially virally - one cold after another keeping me housebound and fearing going to church or meeting others due to viral worsening." "Thank you for putting this information out there. It's incredibly helpful and gives me hope." "It is always nice to hear of those who know/understand these hideous dysfunctions. Thank you for your care-filled website." "I just read your story online www.fms-help.com/fibro.htm and appreciate it so much. God bless you for reaching out to others who suffer with CFS and Fibro." "I recommend your site to everyone in my small support group." "Thank you for your site www.fms-help.com - it has helped me and many others, and I steer every fibro sufferer I meet, or CFS sufferer, to your site to get the info they need to get to their doctors." "I absolutely LOVED your Christmas message!" "I appreciate all you have done and continue to do for others prompted by the great love of God and His Son as well as your own wonderful personal love for others. There are no words to express how very much we appreciate all that you do in this manner." "You are so informative. Your newsletters cover 99% of what is out there." |
2. TRANSFER FACTORS
From a reader--
From Dom: There is something more effective than transfer factors and colostrums! Write dombush@bellsouth.net for info.
3. THE RETURN OF POLIO?
Posted on Dom's Yahoo Message Board--
The Return of Polio?
Vaccine programs introduced over 50 years ago caused many of us to incubate mutant
viruses?including a form of polio for which there is no known cure!
Contrary to what you've been told, our war with this powerful virus is far from over.
The polio vaccine may have "conquered" polio strains 1 ? 3?but we've since identified 69 more strains
of polio. Some cripple?some kill?some merely cause flu-like symptoms and then remain in the body
for years?to re-emerge 20 or 30 years later in the form of a mysterious Chronic Fatigue Syndrome.
And the polio vaccine itself will help these 69 strains spread even faster!
A biological nightmare
In fact, thanks to the live polio vaccine, we're about to face an onslaught of bizarre and threatening
diseases. One frightening example is the "mysterious" disease known as Guillain-Barre Syndrom (GBS).
After the introduction of the oral polio vaccine (OPV) in China in 1971, the incidence of polio
fell?to be replaced right away by a sharp rise in the cases of GBS.
Researchers from the Second Hospital of Hebel Medical College in China reported that "the widespread
use of the OPV may have led to?a change in the main epidemic of the polio virus," and that
"the polio virus is an agent in cases diagnosed as Guillain-Barre Syndrome."1
In other words, instead of wiping out polio?the polio vaccine simply suppressed it in favor of one
of its cousins?another paralyzing virus for which there is no known cure!
And this is just the beginning. Countless more mutations have yet to be discovered.
Is it just chronic fatigue?or the Post-Polio Syndrome?
You?or your children?may have been infected with polio, without knowing it.
Only 10% of all children infected with polio actually contract the virus. The other 90% experience
nothing more than a headache?a fever? mild aches and pains.
But the virus never "goes away." It simply sits in the body, travels through the bloodstream?and,
according to some scientists, resurfaces 20 ? 30 years later in the form of Post-Polio Syndrome?otherwise
known as Chronic Fatigue Syndrome (CFS).
The first international scientific conference on the Post-Polio Syndrome, recorded in the Annals of
the New York Academy of Science, documents the research of 118 specialists, including 6 who have shown that the virus that causes CFS is genetically related to the virus that causes polio.
In other words, CFS and polio stem from the same family tree of viruses!
Over half a million Americans suffer from CFS, with symptoms that include weakness, pain down
the spine, and other vague, recurring illnesses such as fatigue, allergies and weight loss.
Experts predict Chronic Fatigue Syndrome will be the neurological disease of this century.
Reader 1--
"This could be something to ask everyone with CFS and fibro: Whether they got the polio vaccine by injection or the "Oral Polio Vaccine" on which a live-virus vaccine is/was placed on a sugar cube and eaten ... My mother recenlty informed me that of her three daughters (I'm the oldest), I was the only one to receive the polio vaccine via sugar cube. She said there had been some sort of "scare" involving polio at the elementary school I attended so the entire student body had to eat the sugar cubes. I was in second grade, so I was 7 years old. Perhaps a majority of CFS/fibro sufferers were required to have the "sugar cube" vaccine."
From Dom: Interesting! Around 1960 I remember going to our school with my brother (18 mos. younger than me) with my dad to take the poilio vaccine on a sugar cube. (Most likely my dad drove us there, since my mother did not drive at that time.) My brother has had outrageously good health all of his life! He is now 55. So, I don't think I can blame the sugar cube entirely for my FMS/CFIDS condition. However, in childhood even before the sugar cubes, I was sickly and he was healthy. Who knows!
Reader 2--
| "I WANTED TO COMMENT ABOUT Guillain-Barre Syndrom (GBS). WHEN I WAS IN COLLEGE STUDYING TO BECOME A REG. PHYSICAL THERAPIST ASSISTANT, I WAS TOLD THAT CHANCES OF SEEING A CASE OF GBS WAS A 1 TIME IN CAREER CHANCE. I SAW 5 CASES IN THE SPAND OF 1987-1999. (12 YRS)" From Dom: I knew a man (65) who had GBS and my mother knew a young woman (in her 30's) with it - both tragic cases! |
4. SCARLET FEVER
From a reader--
"I had the sugar cubes when I was in junior high school also. But what has had me wondering when I was a little girl I had Scarlet Fever and this old old doctor told my mother and father that when I grew older he thought that my scarlet fever could possible cause me some serious problems.. I don't know but 50 years ago they didn't know things we know now but!!the doctor had told them also that I would be a scarlet fever carrier!!!??? Who knows??? Any strange things have happen to me since I was a little girl, sick all the time, etc."
5. INTRAVENOUS VITAMIN C
From a reader--
"If there might be a connection between CFS and the polio virus, then you absolutely must read a book that I own
called 'Curing the Incurable, Vitamin C, Infectious Diseases and Toxins' by
Thomas E. Levy, MD In this book the author (a doctor who himself has already worked with
curing viruses with Intravenous Vitamin C, but never with the polio
virus) was overwhelmed and dismayed by the emotions he felt when he
read all the research and case studies from Frederick Klenner, MD
decades ago. He was heartsick that so many kids had been needlessly
paralyzed and suffered with polio. He thought it just couldn't be
so. How could we have a cure and only a handful of doctors in the
50's were using it??? This book is a must read just because its
fascinating. none of it is speculative, but rather just case studies
and their details. It is well-referenced. The physicians are named
and patient details are described. The dosage of intravenous
ascorbate is given. There are numerous doctors still using this
therapy. HIgh dose Vitamin C kills the polio virus and is completely
non-toxic. I enjoyed the book so much, that I bought a second copy
for my niece, a veterinarian. Every single nurse, doctor, dentist,
and veterinarian ought to read this book. There are used copies on
amazon. The book discusses intravenous, intramuscular (i.e. a
shot) and oral forms of Vitamin C. The book was recommended to me by
my aunt (she's a nurse who also happens to have fibro like me) and she
worked in a doctor's office where they provided these IV Vitamin C
drips to patients. Because the book is a compilation of case studies
and dosing info, it doesn't recommend any particular type of Vitamin
C. I had to do that homework on my own. I discovered that if a
person doesn't have easy access to a doc doing the treatments, that
the next best thing is buying L-ascorbate powder (the fully reduced
form is best). I did a lot of internet shopping for the best deal
while being the highest quality. If you want two of the websites I
can provide them. Get your hands on the book first though. Trust
me, you will be lending it out like a crazy woman! I want everyone to
read it in my family. By the way, the L-ascorbate did not irritate my
stomach at all. I just got my first shipment and after my first high
dose I felt so much better with more energy. I have always believed
that fibro had a mycoplasma connection. If I'm correct about that,
then I can treat the mycoplasma "infection" (chronic) with the
effervescent L-ascorbate (not to be confused with ascorbic acid) long
term. L-ascorbate is completely non-toxic, which the book
proves....you wont believe the huge doses that researchers gave to
adults, children, and even preemies with no toxicity seen. You also
wont believe some of their notes and how it changed the patients
symptoms. The Almighty has provided us with natural substances to
help us, but so often we reject common sense and what the Lord has
provided all in the name of the greedy dollar for big pharmaceutical
companies. So far so good, but it's only been 3 days. Actually I don't take ascorbic acid, I take L-ascorbate. It's a different version of ascorbic acid. Ascorbic acid causes tummy upset and sour stomach when taken in high doses, whereas the L-ascorbate doesn't. From what I've read L-ascorbate is more natural and has more anti-oxidant power than ascorbic acid. I'm going to also start olive leaf extract. Have you taken that? I just ordered this book (see link for the reviews) ....read the reviews. One of the reviews says that CFS and fibro patients should start slow with it. It sounds like something all households should have though.
This natural antibiotic has appeal to me just from it's name! I think of an olive branch being a sign of peace, and also that Noah released a dove that came back with an olive leaf in its beak letting Noah know that the waters were receding. I also think about all the ancient olive trees in the Holy Land. I know that olive oil is healthful, which is why I use it almost exclusively. The book of Revelation talks about the leaves of certain trees that are for healing. Can you just imagine how hard-hearted and foolish we will feel one day if we find out that some of the healing trees were here among us all the time?"
6. LOSS OF GRAY MATTER IN BRAINS OF PEOPLE WITH FIBRO
Reader 1--
"Count me in for loss of gray matter. Each MRI (since '02) lists numerous white-matter lesions. They are scattered throughout my brain, but no specific area is noted. (I can see them multiplying on the films.) It may be encouraging for you & others to know my memory hasn't diminished by 9.5% per year -- either that, or I can't remember :)"
Reader 2--
"The item about loss of grey matter hits me very much at home. My main dx in 1998 was MS, but my neuro brought in the fibro expert here to substantiate his (neuro) suspicion that I also have FMS. They agreed on that so my final dx was MS + FMS. One of the MS treatments and the one that I've been getting since 2001 is Betaferon, interferon beta 1b. It seems, according to annual MRI, to be preserving my brain mass. Since 2001 there has been no significant degredation of my gray-matter mass. Is it possible that fibromites with decreasing brain mass also have some form of MS?"
7. DIVERTICULITIS and CFS SYMPTOMS
From a reader--
"Just prior to and during my antibiotic treatment [to eradicate a staph infection],
I was hit with several attacks of diverticulitis!
Diverticulitis is where you have little 'herniations' of the colon
(usually in the last couple feet) which get filled up with poop, and don't ever empty
themselves out (and they don't heal.) They are almost uniquely a product of the low-fiber,
high-fat Western diet, as they are relatively rare in underdeveloped countries. I had
surgery and I am still recovering. However, the surgery was not too bad,
and I learned from the very smart [docs at the hospital] said
that diverticulosis can actually cause a chronic-fatigue like symptom set (the diverticuli
can have "micro-perforations", which leak a slow stream of, well, POOP into your abdominal
cavity, where it is reabsorbed into the bloodstream, etc.) This can have a sub-clinical
form, where it doesn't show up on any blood tests, but makes you feel like... well, you
get the idea! (The next step up is where they DO leak enough to give you a high white-cell
count and a fever, and I had several incidents of those. The next step up from THAT is
where one just blows out, which calls for immediate emergency surgery and the possibility
of a COLOSTOMY (sometimes temporary, but sometimes permanent!) I was pretty sure I didn't
want to go THERE, so I decided to just get it taken care of.)
I continue to believe that CFS/FM, like all 'diagnoses of exclusion' (i.e. 'garbage-can
diagnoses') is unlikely to be one single thing, but rather a group of diseases which are
difficult for current medical science to detect, but which all have very similar symptom
sets. Thus, you might want to pass along to your readers that if they have ever had a
full-blown attack of diverticulitis (with a fever and lower left groin pain), that they
may want to consider THAT as a possible cause of CFS-type illness. (I'm sorry to say that
'home' remedies for this are at best useless, and at worst, can actually make the disease
worse or bring you to that 'emergency' state I described above. Forget about laxatives,
fiber, castor oil, etc. Once you've actually GOT 'em, they pretty much have to be dealt
with surgically.)"
8. BIOLOGICAL WARFARE
From a reader--
"This article will shock you how the US government and scientists in the 40s and 50s experimented with American and Canadian population, spreading towns and cities with a pathogens, called Mycoplasma, which with their full knowledge would lead to host of diseases such as Chronic fatigue, Fibromyalgia, Multiple Sclerosis, AIDS and many others that have to do with the human nervous system, all with full knowledge of the government, all in process of developing biological warfare arsenal. Yet the people were not told at all. The article says all Americans are affected by it to some degree. Mycoplasma kills and turns into mush whatever it occupies, the brain (leading to Alzheimer's), the heart leading to heart weakness and left ventricle failure, the bowels leading to Crohn's and other bowel problems. What I and millions of others are suffering could clearly be traced to this. The documentation is all in there with dates, congressional hearing and approval to spread this stuff from airplanes over cities. It makes one sick to read this. http://www.globalceuticals.org/mycoplasma."
From Dom: In December 2002 there was an article in our local Jacksonville paper "The Florida Times Union" about this, as it had become declassified information. I refer to it on my site at www.fms-help.com/mycoplasma.htm (end of that page).
9. PSEUDO-SEIZURES
"I've been diagnosed with Fibro, Rheumatoid arthritis, Lupus and possible chronic fatigue syndrome. I am having involuntary limb and body movements. I've had pseudo-seizures (my own diagnosis) and recently read that they can be due to fibro. I've seen 3 neurologists and a couple of psychologists and most say it is conversion disorder a severe form of Post Traumatic Stress Disorder caused in childhood. One Dr. said it was myoclonus and I'm wondering if I should keep investigating as I don't remember such a severe childhood. [Could it be dystonia?] I am overwhelmed and misunderstood. Any response from you would be greatly appreciated! God bless. - Melody mel-1969@sbcglobal.net"
10. DEVELOPMENTAL IMMUNE TOXICITY
From a reader--
"Make sure in your survey that you ask questions about what peoples' mothers were exposed to while they were pregnant. That's where ALL the arrows of causation for this and a host of other illnesses are pointing. Researchers have found the immune system is directly causal of epilepsy. Changes in the immune system cause inflammation in the brain that sends out a chemical signal that causes seizures. And with so much of epilepsy first diagnosed in childhood...often without previous cause (like head injury or illness), there can only be one other initiator...developmental immune toxicity. Developmental Immunotoxicologist at Cornell University, Dr. Rodney Dietert, just wrote a paper linking up to 50 diseases, not just to DIT but also to each other. In other words, if you have one disease, you have a greater likelihood of developing certain other diseases and not developing others...depending on which branch of the immune system oversees the fight against the pathogens. What seems like a later life causal event is just a prewired trigger for the immune system to show it was damaged and never developed correctly. More on that will come out in the public press within the next couple of years."
11. STEALTH PATHOGENS
From newsletter reader, Steve--
"Please take the time to register and bump
My 8th posting on this forum currently in response to -
_____________________________
gewisn [ Joined on 11/08 ] [ Posted on November 29, 2008 ] -5 Points
Let's see...
- The proof that Fibro is not "all in your head" is that scans show brain
perfusion/function problems?!
- Fibro is caused by hypothyroid...no, wait, it's fungal... nope, it's MSG...no,
it's quinolone antibiotics...um, having an autistic relative casues it...I meant
it's caused by turkey basting?!
- T3 cures it...no, antifungals cure it...nope, organic eggs cure it...no, wait, I
meant "a cosmic secret code to the frequencies of healthy tissue" cures it
and we can treat you by via telepathic email if you just send us all your money?!
Your comments, stories, treatments, cures, arguments, etc. indicate that it is
NOT one single thing, but many things caused by many things, relieved by many
different things. None of you, incl Dr Mercola, has THE answer, since there
isn't any ONE answer.
_____________________________
S Frahm [ Joined on 05/08 ] [ Posted on November 29, 2008]
I don't have all the answers, but I've addressed these & am winning my own
battle with this disease. Click on my name, View S Frahm's Profile, click on
the Recent Posts tab & you'll see my answers to every one of these issues,
except malic acid already covered. None of my info-links ask for money.
Your immune system gets a stealth infection that's difficult to detect, diagnose,
or for the body to defend itself against. The infection hides inside your white
blood cells (that can cross the blood brain barrier) to carry the infection
everywhere in your body. So you end up with a chronic systemic infection of
very slow growing pleomorphic (shape changing with multiform life cycle)
organisms attacking all organs at the cellular level. This fungus like bacteria
with no cell wall of it's own, starts punching holes in every kind of your cell
walls, mitochondria, gut, brain, etc. & what ever is the weakest starts to
show symptoms of everyday viruses, that you would normally be able to
fight off. Causing 300 different kinds of problems, confusing everybody.
Anything that feeds the immune system helps. Anything that uses up cellular
ATP energy like exercise makes it worse. Anything affecting your already
dysfunctional hormones, circulation or electrolytes like MSG makes it worse.
More confusion. Virus, bacteria, metabolism, pick an organ or gland,
neuroendocrine disruption, a new kind of heart disease, stress, yes. All of
the above. A slow growing chronic systemic infection of the immune system
that affects every organ and the entire body head to toe. The effect is
spectacular. At first it is completely sub-clinical. Eventually, after much
suffering at the hands of many physicians it usually ends in premature death.
"Stealth pathogens. Not all stealth diseases are viruses,
although genetically modified bacterial often contain
genetic code from viruses. Whether put there deliberately
or from bacteria simply being infected by bacteriophages
often remains to be seen. The experts that I have read,
mostly lean toward man made changes for specific
reasons that I am only beginning to understand myself."
12. LYME DISEASE IN FLORIDA
Reader 1--
"I've been doing some research, I also appreciate everything you've provided for me, it has been helpful. Especially the idea about putting the icepack on the back of my neck (the little brain). Also, the article on Polio. It just seems the more information I come across the more I get confused, but I try not to feel that way. I want to bring to your attention about Lymes disease in Florida. Most doctors will practically laugh at you in FL. if you even mention that you may think you have it. Because it is more prevelant in the Northern and Western regions of the States. However, if you do a searh simply typing in 'lyme disease in Florida,' the information that comes up is astounding. From the beginning of my illness, I suggested that I may have this to my Dr. He did the standard test, which I believe is a western blot test. However, it is known to have false/positve and false/negative results. My result was negative. I read an article about a lady who had Lymes for a decade before they finally diagnosed her. She had recieved several negative results on blot test. Finally, she paid for the expensive test, which tested for the Bacterium and she was positve. She went through 6 months of hospitalization with IV antibiotic treatment. The symptoms of Lymes is very similar to Fibromyalgia, and many other illness. If left untreated it can do cause conditions, one such is ALS (Lou Gerigs). I just want to get this word out. I hope everyone will read up on lyme disease."
Reader 2--
"I think I may have Lyme disease; actually they are calling it chronic lyme disease. There are many myths about it, doctors are not educated on this disease, especially in Florida. Testing is unreliable and treatment is expensive. Central FL Research in Winter Haven has a somewhat reliable test. This disease mimics fibro, ms, als, and other diseases. If you would like check out some of the videos on youtube.com Type in lyme disease or lyme disease in florida. You often cant see the ticks, as small as a sesame seed or smaller, you dont have to have a bulls eye rash and lots of other information."
13. GAS & BLOATING
From a reader--
"I haven two major setbacks this week from overdoing too many times this past week. I have learned that if I completely rest at least one whole day I seem to be better. Also my doc has put me on so many new meds I can barely keep up with them. I do notice that when I don't take my regular supplements that I don't have any energy. He is trying to get my sleep and anxiety under control which he thinks are linked. I get so tired of taking so many things that I get discouraged and want to quit them all together. I see my doc on Wed. so he can check some new blookwork, including celiac sprue. He says I am borderline and I should go on a gluten free diet. Please pray that I can get this under control, especially the gas which is so embarassing."
From Dom: I had severe, painful gas and bloating problems all my life until 2001 when I discovered an immune powder that works in the intestines - where surprisingly 80% of our immune function is located. Write dombush@bellsouth.net for info.
14. HERBS
From a reader--
"Pure Herbs has a combination they call S.B.-T or "superbugs"..."we live in a time when many infections have become resistant to even our most potent antibiotics. We need something to help us with this. Superbugs will help kill the infection without harming the patient....Contains: Grape Seed, Echinacea, Mugwort, and Sanicle." They also have another one that the receptionist told me is very popular called "I.V.-H or Infection and viruses"....it says "It is always a great pleasure when we see the problem of viruses and the complications of infections meet their match in the herbal world. This formula is a new approach with known, tried and tested herbs to meet the challenge of flu, coughs, colds, headaches, sore throats, stomach aches, vomitting and other miseries. It was developed through great need, experience and observation of results with real people. Its final formulation relies on combining the strength of Myrrh, Olive Leaf, Wild Rose Hips, and Yarrow for its potent herbal punch to repair the immune system and recover your health....results are impressive and extensive" Also says it works on fungus, parasites and fever. I used it when everyone here had horrible colds. My daughter slept in my bed when she was so sick and coughed her head off. I didn't get it PTL! Pure Herbs is a Christian company with many testimonies giving the Lord the praise for His herbs and how they have helped so many."
15. NATURAL PRODUCTS BEING MISTAKEN FOR DRUGS
From a reader--
16. MENTAL DECLINE and STOMACH ACID
From a post on Dom's message board--
"The latest medications found to cause a mental decline are those that reduce stomach acid. A study published in the Journal of the American Geriatrics Society followed those who took either prescription or over-the-counter acid blockers, such as Pepsid, Axid, Zantac or Tagamet, for more than two years. Users were more than twice as likely to suffer from cognitive difficulties, ranging from mild confusion to dementia. If you are a long-time user of these products, you may want to ask your doctor about alternatives. http://www.increase brainpower. com/have- new-ideas. html"
17. SOY
From a reader--
"I just went into your site www.FMS-HELP.com/tips.htm and saw #73 re: SOY. Goodness me! You found out years ago about this SOY problem. Whenever I've eaten SOY, I always felt uncomfortable with it. We CFS/Fibro people must be extra vigilant about what we consume. I'm 56 and you're 57, and it seems to me that we're the generation that has been through the most food-experiments in history. In our mother's times (especially our mothers-grandmothers-times) just about everything was home-made. Then along came Birds-Eye, and frozen foods. The canning industry. More recently the revolutionary fast-food industry. The supplementation-industry, too. The list goes on!"
18. DR. JACOB TEITELBAUM
From a reader--
"I am following a regimen of (what I can afford) treatment/supplements designed by a Dr. Jacob Teitelbaum (a book was given to me from a nice elderly lady who had CFS, once she heard I had it) in an attempt to combat these dysfunctionalities. Many of the items overlap with your wonderful suggestions www.fms-help.com/what.htm."
19. THE LIGHTNING PROCESS TO CURE M.E./CFS/FMS
Got this info from a reader--
See http://www.lightningprocess.com/Default.aspx?tabid=80 to read (or see videos of) recovery stories from people with ME/CFS. It is similar to Ashok Gupta's approach to "curing" FMS/CFS (accessing the thought process), which I have discussed in past newsletters www.fms-help.com/newsletters.htm. Phil Parker's site says, "Please note that because we consider M.E, C.F.S, P.V.S & fibromyalgia to all be part of the same type of condition, and find that they all respond equally well to the Lightning Process Training. We use the term M.E. to refer to all those illnesses." Phil Parker calls ME/CFS "glandular fever" and says it affects the neurological, immune and nervous systems of the body. He says this illness is NOT in the mind. I would be most interested in your thoughts after you have a chance to surf around his site. I'm particularly interested if anyone has tried it or knows someone who did. Do the results last? Some of the testimonials say they are still cured even after a year! If FMS/CFIDS/M.E. is caused by a virus, how does accessing the thought process take it away?? I am curious! Write dombush@bellsouth.net.
Reader 1--
"I live in the UK and know about Lightning Process [mentioned above] and I have a friend who is a trainer for it. It is not as simple as it sounds, but I can maybe answer some of your questions.
Meanwhile can I draw your attention to two other therapies along the same lines.
"Reverse Therapy" and "Mickel Therapy".
Check these out and as I have BOTH of them (yes I still have Fibro) I can enlighten you.
On the virus idea, I don't think anyone in England thinks that.
Even though some ME people have had Glandular fever prior to, it isn't considered to be a viral illness.
The above therapies work on the notion that the Hypothalamus is out of whack.
Anyway I have migraines all the time and today is not great but I wanted to help if I could."
From Dom: I have reported on Reverse Therapy and Mickel Therapy in past newsletters, as well as Ashok Gupta's amygdala re-training program which is along the same lines. My newsletter archives is at www.fms-help.com/newsletters.htm, if you wish to do a search.
Reader 2--
"Lightning Process uses a miriad of new age techniques - eg colour 'healing'. I've heard talks given on the expensive 1/2 wk course at $1000. Problem is, some people's 'M.E./CFS or CFIDS' is actually chronic fatigue from stress, depression or psychosomatic - not genuine CFIDS. That isn't to say that God does heal - as i can testify. The devil duplicates healing to lead folks into New Age/paganism."
Reader 3--
"After careful inspection of the website you included, my opinion of The Lightning Process is that it is another scam/money maker with no results. Perhaps he has testimonials of patients who have been cured, testimonials that may have been paid for, which is common in our era. Perhaps the testimonials aren't paid for and they are from real patients who were truly cured, but perhaps those patients were wrongly diagnosed with these diseases, when they didn't really have them and merely were sick with emotional guilt from life.
There is a similar process by a woman called Caroline Myss and I have several of her lectures on DVD. I have used her program and remarkably have healed from a lot of emotional pain and guilt that I accrued over my many years of suffering. The woman is wonderful, and probably the lightening process inventors were some of her patients before, meaning they may have gotten the idea from her or based it on her technique. While her process was astounding at healing my emotions and helping me get closer to God and act responsibly as an adult, and learn to manage my energy input and output for a semi productive day, it did not heal me from the virus. It helped me learn to manage my daily energy resources more productively but it did not heal.
After reading the website about the lightening process, I noticed some typos in the website, so perhaps I prejudged a little early and lost some respect but I still gave it my best effort to understand what little info they gave about the process. It was so very vague that it reminded me of the scam websites. I realize it is difficult to sell something and still keep your secrets so others don't steal them, but that is the process of sales, not the practice of medicine. I ask myself, if this is working, then why has it not been advertised more publicly, why has it not been recommended by more reputable areas of medicine. It is like the website biologicalmiracle.net that says they use a gene in crocodiles or alligators to cure any dealy virus. It is now banned in the US and is only sold in the UK. Now the link isn't even working. This tells me that they made their money and now they run from those warranties and guarantees they promised.
It is my belief that the lightening process is not a cure for the listed diseases, but merely another way of dealing with pent up depression from trauma and emotional heartache. Them saying that they believe that chronic fatigue and the listed diseases are a real virus is their way of connecting with their public to reel in the right clients to make their money. It is a common sales practice. I have not tried their particular service, but have tried what I believe to be something similar, and while it works for many things, healing from a virus was not one of those things. It does help you deal with it better and manage your energy levels better, but cure it is not."
Reader 4--
"I have had no experience with this technique but it sounds like the typical "mind over matter" philosophies that we all try to use in our daily lives. And, while I know that what I think about directly affects how I feel and when I am busy and happy I don't notice how much I'm hurting until I finally slow down or go to bed and try to go to sleep; it's extremely hard to believe that paying this man to give me a three day training seminar on this subject is something I would approach with extreme caution. Even the success stories are unconvincing. I have had this disease for 10-15 years and have "tried everything" as I keep trying new things all the time looking for the 'cure'."
Reader 5--
"This all sounds like a lot of rubbish to me....I look forward to any of your readers writing to you about any treatments like this they have tried....I got myself out of my negative thought spiral, and STILL have FM!!!"
Reader 6--
"This is what my friend [who tried the Lightning Process] wrote back yesterday when I asked for more details: 'I know it seems hard to believe, but the way the Lightning process is structured and taught is very simple, yet profound. I find it difficult to explain, but In my own words it's like re-wiring your neural pathways in your brain, creating new fast track information that instantly makes you feel well, letting the old neural pathways grow over with grass (hypothetically speaking) You know I tried so Very Many Ways. This just worked, and not just for me but for all the people on the course.'"
Reader 7--
"Being a christian I am very leary of the lightning process and any type of hypnosis. These types of so called treatments are considered new age and are not biblical. The psychic world deals with the psychological and God totally considers (psychic and the occult in the same genre.) I think we need to renew our mind on God's word, His healing scriptures, seek Him and the medical community. Even Luke in the Bible was a doctor. I do not want to take a chance on seeing us open ourselves up to something that is spiritually dangerous. It sounds so tempting to try but, as a believer in God (my Creator who knows us best) I feel we need to take His advice very seriously. He does say that these things are an abomination to Him."
From Dom: I too refuse hypnosis because of this being a gray area. Controversial, I know.
Reader 8--
"I think his process and his entire program is yet another scam. You can find tons of unworthy snake oil cures on the net for CFIDS and Fibro. They all have some book and medicine or better yet a cheap DVD to buy and they get rich. If this was a bonafide cure it would be getting world wide attention. Not some testimonials from possibly paid persons to help sell a product. If this product was legit, the persons would submit it for intense review with legit medical organizations and medical schools. Oh no.. on the net with tons of desperate people like us, PHIL is getting rich! We have already had the CDC list studies showing antidepressants have no effect whatsoever on this disease. Positive thinking will not cure us. Save your money.
People accept that the flu kills yet we don't accept that the viruses can damage the body? Stupid. Just yesterday it was reported that the mere cold sore virus.. yet another herpes virus.. which we know stick around for ever.. is implicated in causing an infectious process in the brain that may causes Alheizer's (spelled wrong) disease. The treatment: antivirals...Maybe they will find out that a similar process is at work in CFIDS/FIBRO.. I do think there is a relationship between the glands, such as the hypothalamus in CFIDS/Fibro. These glands are suppressed by infectious processes to make us slow down so the viruses don't replicate so fast. Well if the virus hides out in muscle tissues, it will get reactivated and the immune symptom will slow us down as it is supposed to do.. to try to keep the virus from replicating."
From Dom: Yes. That's my theory about FMS/CFIDS too. Viruses affect portions of the brain, especially the hypothalamus (the control center for sleep, temperature regulation, etc.) I have reported on the relationship between HHPV-6 (herpes virus) and FMS/CFIDS in past newsletters www.fms-help.com/newsletters.htm. I also wonder about the virus hiding in muscle tissue, because for many people with FMS/CFIDS, exercise and activity makes the illness worse instead of better. That may be why the "graded exercise" advice doesn't work for most of these patients.
Reader 9--
"The only proof is patient testimonial. He won't say who is doing what kind of research. Why should this be a secret until "findings are collated and some conclusions are drawn"? One can say research is being conducted indefinitely without ever actually producing any results. Here's a good thread about it: http://www.healthboards.com/boards/showthread.php?p=2810182."
Reader 10--
| "I read his web site and it sounds like much of the training and supervised one on one therapy I went through for almost two years with a psychologists. He was trained in pain therapy and relaxation techniques. Lets just say, I am still in pain and if this disease is neurological then WHY DOESN'T MY NEUROLOGISTS HELP ME, I have been to three neurologists and they all just look at my MRI's for my back which I have a herniated disc that is now degenerative disc disease and they treat me for that. Not one has offered to treat me for my fibro or my Lupus. I really believe treatment for our disease is better in different parts of the country and [where I live] has the worst. I don't think I can live another year here, I am so suicidal now that the thought of another year here is heartbreaking. It is hard enough to struggle while you are healthy but to struggle when you are in pain is just too much." Reader 11-- "This method sounds too good to be true. I have tried a few systems whose names escape me at the minute that were nice while I did them and left a good result for a while, but some time later (a few months) I was back to "normal". I know we're all looking for the magic door to "the way we were", but I doubt there is one. Sorry to sound pessimistic. I'm not. I'm just realistic and practical." |
20. KLONOPIN STILL HELPING
From a reader--
"Actually I think it [Phil Parker's Lightning Process, Topic 19 above] is a crock of crap! Once again, if it was that wonderful and worked so fast, why don't our doctors know about it. I' am so tired of these types of websites that offer quick fixes. I could only pray and wish it would be that simple. After 10 years plus with Fms. I have read and seen alot of these kinds of websites. I'm sure you have too. Why do we keep talking about Dr. Amand's guaifenesin (sp) treatment. That is so out dated. I truly hope people don't put themselves through that torture anymore. I am even disappointed with Lyrica. My sister who also has Fms tried it, and many people on the Fms message board, and not to many people have good things to say about it. The side affects are not worth it. That commerical on TV for it doesn't do us justice at all. I've yet to actually watch something on tv that has to do with these types of illnesses and do them justice. They always seem to find the person who still works, exercises, and takes antidepressants for pain and tylenol. In a perfect world that wouldn't be so bad for us if that was the case. I know Fms don't hit no two people alike , and there are different stages of pain and fatigue for all of us. Some people can do these things, but for the most part , for most people this has really changed there quality of life. I hope some day soon, they really find something to help manage or cure this illness. From zanaflex to Lyrica they have all been failures. I won't forget the day my doctor called me all excited about Zanaflex. I thought my nightmare was going to come to an end soon. That medication did nothing for me, Nothing!!!!! Not to many people were put on it and now a days you don't even hear about it an ymore. Actually for me and my sister the one medication that we have available to us helps alot. and that is klonopin. I can't tell you how many times I have been in a bad flare up and If I take that usually the next day I am so much better. I told my sister about it and she feels the same way. I tell people who have access to this medicine to try it and alot of people find that it does help alot. Thng that gets me is I always forget about it and I'll suffer for a week and then it dawns on me, 8 times out of 10, I feel alot better by the next morning."
From Dom: I was prescribed Klonopin for sleep shortly after my fibro diagnosis in 1982. I found it helpful. Don't know why I switched to other things - perhaps next day hangover? Can't recall. Anyway, here's some info about Klonopin from www.drugs.com: "Klonopin is in a group of drugs called benzodiazepines (ben-zoe-dye-AZE-eh-peens). Clonazepam affects chemicals in the brain that may become unbalanced and cause anxiety. Klonopin is used to treat seizure disorders or panic disorder. Klonopin may also be used for other purposes not listed in this medication guide."
21. LIGHT and IMMUNE SYSTEM
From a reader--
"Have you been to www.immed.org [Garth Nicholson]? There are sub-receptors in the skin that regulate the immune system by light. I've heard of infra-red therapy that helps some. Even people having their blood run through a machine at a high temperature to kill germs/viruses are stored in body tissues."
22. MERCY KILLING OF DAUGHTER WITH M.E.
From a reader--
http://www.express.co.uk/posts/view/74829/ - Mother held in mercy killing of 31 year old daughter. "Lynn was only 14 when she fell victim to ME (Myalgic Encephalopathy) ? once known as yuppie flu ? allegedly following an anti-TB jab at school and her immune system broke down. Her mother has campaigned for greater understanding of the illness and criticised doctors who dismiss sufferers as time wasters and attention seekers."
Response from a reader--
"Very tragic and possibly avoidable suffering if her family had her on [the immune powder] combined with high dose L-ascorbate and moderate dose olive leaf extract. ME might be a latent virus related disorder that affects the central nervous system. The olive leaf extract and intravenous Vitamin C would have tackled the infection in her spinal cord and CNS system."
23. READER NEEDS ADVICE
"I have had a new development of headaches, sometimes dizziness, nausea and just a sense of things not being right in my head since about Oct. 20. I am seeing a neurologist next week. It came on suddenly. So far I have had a CT scan and seen the ENT and the GP, of course. They don't really have any ideas. I was really bad one day, vomiting and crawling on the floor while everything outside my head spun around something awful. I keep hoping I will wake up and it will be gone, like I woke up one day in Oct. and felt 'wrong'. They talked about an inner ear virus, gave me antivert. The antivert gave me convulsive movements of the upper leftside of my body. That was really horrible until the meds wore off. I was afraid I might be that way forever. But the rest of this has just not gone away. I actually went off all meds and vitamins except for baby aspirin, my diabetes meds and my water pill (to control bp ). Any ideas? My fibro, surprisingly, has not been bad through this time. Like my body can only pay attention to one thing at a time? I also have a really hard time with bad odors, and sometimes smell "smoke" when it is not around. (I know, my brain is finally just burning up! LOL) Really weird. Sometimes I take Advil to help. But I am trying not to mask the symptoms being I don't know what is wrong."
From Dom: Sure sounds viral to me. I also know what this reader means by her body can only pay attention to one thing at a time. Sometimes when I get sick with a virus, I actually sleep better. It's like whatever normally prevents me from sleep is somehow "overcome" by this other virus.
24. "MY NAME IS FIBROMYALGIA"
From a new member of Dom's Support Group--
"I just joined this group and was a little nervous about just jumping in, but after reading "My Name is Fibromyalgia" www.fms-help.com/mnif.htm, I knew that I was home. Thank you Dominie for letting me join your special group."
From another member--
"Thanks Dom for sending this "My Name is Fibromyalgia." It is me to a T. You are a great help to FM patients. I feel like sending it to my doctor who still believes that after 42 years I can make it go away if I just do the right things he tells me to do."
25. MARITAL HARMONY
From Dom's message board on Yahoo--
"I wanted to mention that
I have a page called MARITAL HARMONY (An Emergency Marriage Manual") at
http://www.fms-help.com/marriage.htmfor any ladies who want to read it. It can bring peace where there is
strife, friction or turmoil. Check it out, ladies. I also believe like
you Brenda, that if a dog is biting your leg, you don't have to stand
there and let him gnaw on you. We can love at a distance, when
necessary. I think we women have too much guilt about this. We want
to be "enmeshed" in our family's lives, even those who don't want that
kind of close relationship with us. I know this board is about
FMS/CFIDS, but it's amazing the amount of stress generated by family
problems, and we all know that stress is our worst enemy. See my Tip
#1 at http://www.fms-help.com/tips.htmso we really do have to find ways to reduce it. I have been in the
trenches with family and marital stress in past decades and it can pull
us down terribly with your health."
26. THE NOROVIRUS
December 16, 2008 ? ?FOX NEWS unfolds the ?World according to the Norovirus.? This virus accompanies nausea, vomiting, diarrhea, stomach cramping, low-grade fever, chills, headache, muscle aches, and fatigue (pretty much like the flu). But this virus, once called the Norwalk Virus, has other plans for everyone in its path. In Great Britain nearly a thousand victims are turned away from hospitals. The spreading of this airborne virus collects 200,000 cases a week. Since July, a noted 1,575 cases emerged, including a US Montgomery County nursing home outbreak. This virus is airborne, although drinking and eating contaminated food can offer this virus on a silver platter. In England during 2007, health protection agencies warned that cases will escalate.
| From a lady in the UK-- "It is true. I didn't know that the norovirus was deadly as this article says, but it's true that it's very widespread in the UK at the moment. ............ Hospitals turn away people with the virus for fear of infecting seriously ill people (eg those recovering from operations etc). My local hospital has closed many wards to the general public (ie no visitors) in an attempt to keep the virus at bay. Here in the UK, they are not treating it as an emergency. They just say stay home, stay in bed, and you'll recover. I hope this beastly virus doesn't reach you 'over there'!" From Dom: This sure sounds like the kind of virus that is here in the U.S. too! Many people I know have recently experienced these exact symptoms. Write dombush@bellsouth.net for ways to battle this (and other) viruses. Those of us with compromised immune systems have to do all we can to stay strong. |
27. HOW TO DEAL WITH AN ARROGANT DOCTOR
From Dom's Message Board--
From Dom: Haven't we all been there! That's a good article. Also, if you have been the victim of a mean doc, visit my page at www.fms-help.com/doctors.htm for some recuperation and comfort.
28. LYME DISEASE MIMICS FMS/CFIDS
From a reader--
29. DOM'S UPDATE
I want to thank my readers who prayed for me last weekend when I sent out an email late Saturday night that I had "overdone it" and was feeling flu-ish and ill all day and was very worried that I couldn't get to church the next day to play the organ. I was lamenting how this illness has made me undependable for normal activity and living. Amazingly, shortly after sending the email, I started to feel better suddenly! I was able to play for both services (A.M. and P.M.), as well as for choir / orchestra / drama rehearsal for our Christmas program. The only conclusion I could come up with is that some of my wonderful readers prayed for me when they got my email! Thank you soooo much! My husband was out of town visiting the grandkids, so I was alone with my misery. Well, the big Christmas program was last Sunday night and it was BEAUTIFUL! To God be the glory!
Now, here are a few things just for fun...
1. A reader sent me the cutest video called "Looking for My Car Keys"-- See www.youtube.com/watch?v=pJDNsJEnWqk - it pokes fun at "baby boomers," but sure relates to "fibro fog" too! Gave me a chuckle!
2. A friend sent me some interesting thoughts to ponder--
"Good health is merely the slowest possible rate at which one can die."
"Give a person a fish and you feed them for a day, but teach a person to use the Internet and they won't bother you for weeks."
"Health nuts are going to feel stupid someday, lying in hospitals dying of nothing."
"In the 60's, people took acid to make the world weird. Now the world is Weird and people take Prozac to make it normal."
3. Our music director (a school teacher) has been writing some intriguing blogs. There's much food for thought at www.carnesiandems.com (political commentary) and www.debtortohisgrace.com (spiritual topics). He tackles controversial and complex subjects with clarity and a remarkable ability to communicate, that I admire!
4. People often ask about my name, what it means, etc. In Latin, "Dominie" means "belonging to God." In Holland, they call their ministers "dominies." In Australia, a "Dominie" is a teacher. There's a teacher supply store in Australia that has my name on it! See the picture at www.dominie.com.au/contactus.asp (scroll halfway down). Ha!
Well, I hope everyone is having a pleasant holiday season. My "Christmas Blues" article is at www.fms-help.com/Christmas.htm. Without Jesus, there would be no joyous Christmas. He did all the work for us so that we could have abundant life. "If any man be in Christ, he is a new creature. Old things are passed away, behold all things are become new." II Cor. 5:17 That certainly became true of my life when I was born again May 11, 1988 www.fms-help.com/salvation.htm.
Write dombush@bellsouth.net if you have questions about FMS/CFS/M.E. I know how baffling and debilitating these illnesses can be. I try to answer as much email as possible. If you don't hear back from me, I am snowed under, but may address your question in the next newsletter. Or, post your question/comment on my message board (Dom's Support Group) at http://health.groups.yahoo.com/group/dominie - we have 435 members discussing various facets of FMS/CFS/MCS/M.E. We have 5 very capable moderators working for you there.
Wishing you a very Merry Christmas and Happy New Year in 2009!
Dominie Bush
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II Corinthians 1: 4 - "Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.
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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.
