DOM'S NEWSLETTER
www.fms-help.com
 
July 9, 2007
 
A compassionate newsletter for people with FMS/CFIDS/M.E.
 
TOPICS ARE IN PURPLE.  MY COMMENTS ARE IN TEAL.
 
DON'T MISS:  #8 - Yeast Infections, #22 - What M.E. feels like, #23 - CFS/FMS is a hypothalmic sleep disorder, and #24 - Dom's update (no fog, fatigue or pain)
 

 
1.  READERS WRITE
 
"Thanks for all the work you put into your wonderfully helpful and uplifting newsletters."
 
"Please subscribe me to your newsletter.  I love your site www.fms-help.com."
 
"I'd like to thank you for all the time and effort you devote to the publishing of your most  informative newsletter."

"Thanks for your tips www.fms-help.com/tips.htm. They were very helpful."
 
"I so enjoy your newsletter. Thank you for doing it."
 
 
 
2. WHERE NOT TO LIVE IF YOU HAVE FIBRO PAIN
Below are the results of a reader's poll at www.fms-help.com/062307.htm, Topic 2--
"Was surprised at the low number of people who responded to this poll!  Figure I should report the results even though they shall be based on only a few good souls:
 
Where NOT to go:
#1  Arizona
#2  Florida
#3  Northeastern America
 
All other places were with only 1 comment to go along with the "no" side.  It turns out that for ALL those suffering Fibro, WEATHER is the key element for the amount of pain suffered.
 
When the barometer falls, you can count on pain arriving.  I suggest purchasing one to keep inside near the middle of your home.  IF it swings too much one way or another, your house is in need of insulation...the better this is, the less pain.  A dehumidifier also helps keep high humidity at bay.
 
In fact, about the ONLY place that you won't experience the ups an downs associated with weather are in an earth-covered home (berm structure, cave, underground, in the side of a hill).  Apparantly weather changes due to the fall/climb of barometric pressure are NOT felt "within" the earth!  People living in these dwellings are not even usually aware of when it it raining unless they venture outside.
 
Now, if ONLY we could afford to purchase one of those missle silos...we could arrange separate apartments within for those with FIBRO and the weather be hanged!"
 
 
3. LYRICA vs. NEURONTIN
From a reader--
"I WAS PUT ON LYRICA AND THOUGHT I HAD FOUND THE PERFECT MEDICINE FOR ME. IT REALY TOOK ALL MY PAIN AWAY. UNFORTUNATELY I WAS ALLERGIC TO SOMETHING IN THE MEDICINE. AFTER TAKING IT A MONTH, I NOTICED MY LIP WAS ITCHY AND IT BEGAN TO SWELL. FINALLY AFTER ABOUT 2 HOURS OF THIS I WENT TO THE EMERGENCY ROOM WITH IT. MY THROAT TRIED TO SWELL CLOSED AS WELL.  IF I COULD TAKE THIS MEDICINE, I WOULD IN A HEARTBEAT.
SOMEONE SAID THAT LYRICA AND NEUROTRIN ARE THE SAME JUST DIFFERENT DRUG COMPANIES. I TAKE NEURONTIN AND IT PALES COMPARED TO LYRICA IN MY BOOK. THERE HAS TO BE SOME DIFFERENCE SINCE I CAN TAKE ONE AND NOT THE OTHER. WISH I COULD TAKE LYRICA."
 
 
4. QUACKWATCH
From a reader--
"Don't EVER believe ANYTHING that you find on Quackwatch.   It's been totally discredited and they are a group of hateful MDs who attack anything and anyone in the alternative health field--including Julian Whitaker and Andrew Weile.  Allopathic medicine has never cured anything and they haven't a clue about real health and wellness."


5.  VITAMIN C
From a reader--
"Thanks to the person who contributed having success by taking a dose of Vitamin C every hour or two.  I've been taking 600mg of Vitamin C every 2 hours for the last five days and it is helping me tremendously so far."
[I have been using a very strong antioxidant since June 5, 2007 and I'm feeling great too.  The one I use is 20 times more powerful than Vitamin C and might be easier on your stomach.  Write dombush@bellsouth.net for details.]


6. BAROMETRIC PRESSURE
From a reader--
"My pain is MUCH less whenever I visit the doctor's office which encased within a large structure - i.e. weather conditions kept at bay even on rainy days.  People should REMEMBER this when visiting a "new" physician as the pain they had when they left their house may be less when the exam is started...which may be one reason a doc is skeptical about the "pain" you say you are having as HE/SHE isn't seeing that to be the case (you've been waiting for the exam minimum of 30 min).  Some times I use a black magic marker and "dot" the tender spots before going in and when the pain is upon me (sometimes the night before an appt).  This way, it is very visible to the physician and much easier than you trying to explain or "find" that particular tender location during the visit which seems to have either disappeared or lessened considerably!"
 
 
7. BRAIN DAMAGE
From a reader--
"The research you quote below on the brain in your newsletter......I can't even begin to go read.  It scares the heck out of me.  Fortunately I have a background in research and am pretty good at taking research papers apart.. like who were the women, where were they from, what had they been exposed to and a million more questions...10 women? thats all?  and should I take it serioiusly.  But of course....... having suffered 20 years.. and I know the cognitive losses ... once being Mensa qualified to now feeling l can'  t learn my own phone number ...This is terrifying.  Does it get any better if I read more of the study?  Is it good enough  info for the newsletter and all of us who are now wondering what will become of us if we lose our lives and brains too...Yikes....... and again it hurts to think of all the people who have treated me like I had a bad attitude and if I just got over my "anger" (existant or non existant) I would be fine... (now that makes me angry!)   What have we been exposed to that has hurt our nervous systems like this?
McGill Centre for Research on Pain, McGill University, Montreal,
Quebec, Canada H3A 2B2.
Fibromyalgia is an intractable widespread pain disorder that is most
frequently diagnosed in women. It has traditionally been classified as
either a musculoskeletal disease or a psychological disorder.
Accumulating evidence now suggests that fibromyalgia may be associated
with
CNS dysfunction. In this study, we investigate anatomical changes
in the brain
associated with fibromyalgia. Using voxel-based
morphometric analysis of magnetic resonance brain images, we examined
the brains of 10 female fibromyalgia patients and 10 healthy controls. We found that
fibromyalgia patients had
significantly less total gray matter volume
and showed a 3.3 times greater age-associated decrease in gray matter
than healthy controls. The longer the individuals had had fibromyalgia,
the greater the gray matter loss, with each year of fibromyalgia being
equivalent to 9.5 times the loss in normal aging.
In addition, fibromyalgia
patients demonstrated significantly less gray matter density than healthy
controls in several brain regions, including the cingulate, insular and
medial frontal cortices, and parahippocampal gyri.
The neuroanatomical
changes that we see in fibromyalgia patients contribute additional
evidence of CNS involvement in fibromyalgia. In particular, fibromyalgia
appears to be associated with an acceleration of age-related changes in the
very substance of the brain.
Moreover, the regions in which we
demonstrate objective changes may be functionally linked to core
features of the disorder including affective disturbances and chronic
widespread pain.

and this on chronic fatigue--

"UNDER the microscope, it could not have been clearer. Sophia Mirza's brain and spinal fluid showed indisputable evidence of inflammation and cell death. The discovery, by the neurologist Abhijit Chaudhuri and a neuropathologist colleague, marked the first time a serious abnormality confined to the central nervous system had been identified at the post-mortem examination of a patient whose principal diagnosis was chronic fatigue syndrome."  Read article at http://www.smh.com.au:80/news/science/victims-give-clues-to-the-answers/2007/04/11/1175971183260.html."
[Sorry I scared you with these reports.  What is amazing to me is that I have had no more pain, debilitating fatigue or mental fog since June 5 when I started taking 2 products suggested by my husband.  I think they send oxygen to my (formerly extremely tired and almost non-functioning) brain and they also detoxify my system.  I noticed improvements in just 2 days.  My faithful readers who have been following my miserable saga of suffering for many years can understand my happiness now.  If you're interested, you can write me at dombush@bellsouth.net for the names of these 2 things I'm using and a link to my online store.  In light of the drastic improvement I have experienced this past month, I am beginning to think that our condition can be helped by restoring the oxygen-carrying function of the red blood cells.  Additionally, one of these products I'm using is able to cross the blood/brain barrier and affect brain tissue.  I have known for years that there is nothing wrong with me physically in my body, but something has been wrong in my brain.  I have pondered whether it is a virus or mycoplasma affecting the function of the controlling glands of the brain.  Well, whatever it was, it is gone now!  Life is so much easier when you feel good. I feel like I have gotten a new lease on life!  It is July 2 as I write this, so I have had almost an entire good MONTH!   Really amazing for me.]

 
8. ALKALINITY, VINEGAR & YEAST INFECTIONS
From a reader--
"The problem with the yeast infection is that I take a daily supplement of probiotics plus eat yogurt and still seemed to fall victim to it. My GYN has offered some hints since using the meds for the infection make it worse. I told her sometimes I feel one coming on and do nothing and it will go away. The best tip she has given me is 2 T of white vinegar to a cup of water in a spray bottle and spray the area after each bathroom use. This helps quite a bit. It was very soothing when I first started as I was in the middle of a 6 week infection that the GYN had tried to treat with no success. I also tried taking apple cider vinegar and it didn’t help me either. What I am learning is if you take something to treat a condition and it doesn’t work..maybe it is a different condition."
[Anyone who has suffered with an resistant yeast infection knows how miserable it can be!  I found a great alkalizing powder and also an essential oil that stops the itch.  Write dombush@bellsouth.net for details.  Also, avoid sugar and excessive carbohydrates, and take a probiotic.]
 

9.  IS YOUR DOCTOR TIED TO DRUG MAKERS?
From a reader--
New York Times article dated July 2, 2007
"It’s no surprise that the pharmaceutical industry is appalled at proposals to set up a national registry of its gifts and payments to doctors. Too much information might lead patients to suspect that their doctors are choosing costly medicines out of gratitude to the manufacturers rather than for the best medical or economic interests of their patients." 
[Read the entire article at http://www.nytimes.com/2007/07/02/opinion/02mon2.html?_r=1&th&emc=th&oref=slogin.]
 
 
10.  DR. CHENEY - DANGERS OF ANTIDEPRESSANTS & STIMULANTS
From a reader--
"Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr. Cheney shows patients the book Prozac Backlash: Overcoming the Dangers of Prozac, Zoloft, Paxil and Other Antidepressants by Joseph Glenmullen, M.D., a psychiatrist at Harvard Medical School. It includes endorsements from other Ivy League psychiatrists. Cheney calls the implications of this book "staggering."
 
Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIÌs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr. Cheney shows patients the book 
Prozac Backlash: Overcoming the Dangers of Prozac, Zoloft, Paxil and Other Antidepressants 
by Joseph Glenmullen, M.D.,  a psychiatrist at Harvard Medical School. It includes endorsements from other Ivy League psychiatrists. Cheney calls the implications of this book "staggering".
 
Donkey's brain: before and after it received a very potent SSRI. The "before" photo shows a dark background filled with fine white lines and white blobs, healthy neurons. The "after" photo is very dark, only a few white lines and blobs remain. Most of the brain cells had been "fried".
 
SSRIs and stimulants work by increasing the firing of neurons. While this often has great benefits in the short term, doctors are now realizing that long term use "fries" brain cells. The body views any neuron that fires excessively over time as damaged, and destroys it. SSRIs and stimulants, taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders. Many doctors have recently seen a sudden increase in patients with neurological symptoms, and most have been on Prozac, or a similar drug, for about 10 years. Cheney is seeing this in his own practice.
 
Parkinson's drugs stimulate the remaining neurons to "perform heroically", firing excessively. However, the article notes that while benefits are seen initially, neurological symptoms get much worse at the three to five-year point. Patients experience wild involuntary movements, etc. These drugs, though helpful in the short term, actually speed up the degenerative process.
 
What mechanisms are at work causing neurons to be "fried"? SSRIs are often prescribed for depression, which involves a lack of serotonin. Serotonin is a neurotransmitter, a chemical messenger. One neuron releases a burst of it into the intersynaptic cleft, (the gap between neurons). The serotonin is then taken up by special receptors in the adjacent neuron. Thus a message is sent from one neuron to another, with serotonin carrying the message across the gap. Excess serotonin is cleared away before a new message is sent. A "reuptake channel" in one neuron vacuums up the left over serotonin.
 
SSRIs are designed to address a lack of serotonin by blocking the reuptake channel from vacuuming up excess serotonin. While this allows more serotonin to connect with the receptors, often too much is left floating in the intersynaptic cleft. The only way the body can get rid of this excess serotonin is to oxidize it. Unfortunately, this turns it into a toxic compound that, over time, kills both the sending and receiving neurons. Cheney stated, "What starts out as an attempt to increase serotonin and reduce symptoms ends up with the destruction of the serotonergic system itself. It takes about a decade, more in some, less in others.
 
Now when the serotonergic nerves are dead, you start getting these motor neuron problems, which is what we're seeing." Cheney commented, "You know what a lot of doctors (who do not understand CFIDS) are doing? They're saying 'Well, let's just give them an antidepressant'. And they are frying their (patients') brains and they don't even know it. In fact, a CFIDS patient on one of these drugs fries their brain even faster than a non-CFIDS person." (See the article on Klonopin for an explanation.)
 
Cheney went on to say, "The other way some people with CFIDS are going is stimulating the brain, using drugs like Ritalin or Provigil. They do the same thing - they fry the brain. They cause neurons to fire at lower stimulus by lowering the firing threshold. All stimulants are dangerous, especially over the long haul. I'm not saying that you might not find them useful in the short-term. But over the long term, the physiology demands that neurons that fire excessively be killed."
 
Cheney strongly urges anyone taking antidepressants or stimulants to read Glenmullen's book. It lists safe alternatives to SSRIs."  http://www.healthy.net/scr/Column.asp?Id=672&xcntr=1
[I've been using an Omega 3 fish oil product for depression.  My sister-in-law who has a Ph.D. in virology suggested that I try this and it has been very helpful.  Write dombush@bellsouth.net for details.]
 
 
11.  BRAIN FOG
From a reader--
"Brain fog is my biggest problem, I feel spaced out most of the time."
[Wow.  I can sure relate to that statement!   I have found two things that help me with my brain fog.  I was even able to organize my desk and clear off a years' worth of papers that had been accumulating.  Prior to this, I just didn't have the mental clarity to do this.  Write dombush@bellsouth.net for brain fog info.]
 
 
12.  NO ENERGY
From a reader--
"I have FMS and arthritis and have absolutely NO energy.  I am dragging all day and do not feel rested when i get up.  Worst part of it all is, I have to work fulltime."
[Oh!  This poor reader!  I don't know how she continues to work full-time, except through sheer willpower!  Reminds me of my own fibro story at www.fms-help.com/fibro.htm.  For a list of things I currently use that are very helpful, see www.fms-help.com/what.htm.  For a list of things I tried for sleep, see www.fms-help.com/sleep.htm.]
 
 
13.  VACCINE FOR HUMAN PAPILLOMAVIRUS (HPV) - DANGEROUS!
From a reader--
"Better think twice (or 100 times) before allowing your daughters, grandaughters, nieces or other young girls to be vaccinated....see
 
 
14.  SLEEP PROBLEMS
Reader needs feedback - please respond directly to Jan at OneJannyW@aol.com--
"Wondering if anyone else has had Ambien stop working for them ... all of a sudden I'm not sleeping on a 10mg dose.  Maybe it has something to do with tapering off one antidepressant and onto another ... would love to hear feedback from others on this.  I've tried all of the sleep meds out there, and several antidepressants, and none of them have worked as well as Ambien.  Sominex has the same active ingredient as benadryl, and that doesn't work either.  I've never tried melatonin because of possible interaction with my prescribed meds.  Frustrating.  Have you ever tried light therapy for sleep?  Curious whether that would help."
[Oh!  Insomnia is a horrible, frustrating, life-wrecking problem!  My sleep disorder began in my teens - I am now 55.  Well, at least it doesn't kill you...or quickly, that is.  See www.fms-help.com/sleep.htm for a list of things I tried for sleep over the years, and also my insomnia story at www.fms-help.com/insomnia.htm.  For a list of things I currently use, see www.fms-help.com/what.htm.  I have not tried light therapy yet.]
 
 
15. NEW ZEALAND HEALTH CARE
From a reader--
"Our tax rates for PAYE are 19.5c up to $38,000, 33cents from $38,000 to $60,000 and 39c over $60,000. Quality of care and length of wait for surgery is not great in the public hospitals here.  I have a private medical insurance which just covers me for surgery only which costs about $90 per month.  Fortunately government this year has just started subsidising doctors visits and prescriptions for the over 45's which is great for me.  Otherwise visit would be about $60 and prescriptions at least $15.00. Still pretty cheap compared with the US by the sounds of it!!   The figures I quoted are in NZ dollars, exchange rate [with the U.S.] is about .74-75cents at the moment."
[I had asked this reader who lives in NZ about their health care system.  I quoted a reader in Canada in the last newsletter about their health care system - visit the newsletter archives at www.fms-help.com/newsletters.htm.  Here in the U.S. we are still trying to figure out what to do about national health care.  Right now if you have money you can buy health insurance, and if you are poor, you qualify for government assistance.  However, for those of us in the middle of the economic spectrum - or those with existing health problems who cannot qualify for insurance - we are really in a bind!  There are some concerns about national health care programs for the U.S.   For instance, how much will taxes have to go up to pay for this?  How good will the care be?  Will you have a choice of doctors?  How long do you have to wait for a specialist?  Or for surgery?  Etc.  Right now I have hospitalization coverage only.  Doctors visits, meds, lab tests, etc. are all out of pocket for me.  Ouch....that hurts my wallet!  One good thing is the new $4 generic drug program at WalMart pharmacy.  If I need a med, I try to get my doc to prescribe something from the WalMart list.  However, some meds I use are not generic - for instance, either Ambien and Lunesta (I use one or the other for sleep) costs me $90 per month.   My husband falls asleep in a couple of minutes - I sometimes remind him that he just saved $90....ha!  This doesn't count all the other supplements and meds I take to stay functional.  For the curious, my complete list is at www.fms-help.com/what.htm.]
 
 
16.   PRESCRIPTIONS DON'T HELP
From a reader--
"I am suffering from a severe flareup of fibromyalgia (which I have had for 36 yrs) and I would like to know more about getting to the root of the problem instead of taking prescriptions that don't work and cost too much."
[Wish there were a sure cure for fibro.  My list of meds, supplements, etc. is at www.fms-help.com/what.htm - these are things I need to have a relatively functional life.]
 
 
17.  WHICH ANTIDEPRESSANTS CAUSE WEIGHT GAIN?
Got this article from Revolution Health (a really great site, BTW)--
 
 
 
18. FIND A DOCTOR OR RATE YOUR DOCTOR
[I rated 3 doctors so far.]
 
 
 
19.  MORE ON FLU SHOTS
From a reader--
"A gentleman wrote in [see www.fms-help.com/070107.htm, Topic 14] about how the flu and pneumonia shot seems to have been a mistake.  He could have Myalgic Encephalomyelitis in addition to Fibromyalgia, as I do.  The National CFIDS/ME Foundation has printed warnings in their member-only newsletter about taking the flu shot.  It is only recommended for the severely ill who could be at greatest risk if they catch the flu, and then it must be given in divided doses only in someone who has myalgic encephalomyelitis.  Someone who has  primary fibromyalgia, but no myalgic encephalomyelitis will not test positive for myalgic encephalomyelitis on the Ciguatera Epitope testing (information is offered through The National CFIDS Foundation) however, if they have the M.E. CFIDS unbeknown to them, they should know after the blood test.  Information on having the blood test done might be available on the website www.NCF-NET.org or one can look up further contact information on that site.   The reason I was given for not taking the flu shot at this less severe stage of ME/CFIDS is due to the very problem he spoke of.  Patients can become worse after having the shot.  I never take the flu shot.  I do not know whether the pneumonia shot should be taken or not, but perhaps The Foundation could answer that one for him."
 
 
20.  COMMON VARIABLE IMMUNE DEFICIENCY
From a reader--
"I was diagnosed last fall with Common Variable Immune Deficiency and I have to get infusion therapy once a month.  Have you heard if this may go along with fibro?  Has anyone ever mentioned this to you before or have you received any information on this?  I have read on the web several sites my doctor told me about.  Not  a very good thing to have, but I must remain positive, so many things are being researched today, you never know what they may come up with for this."
[Do you know anything about Common Variable Immune Deficiency?  Please write dombush@bellsouth.net.]
 
 
21.  LYME DISEASE OR FIBRO?
From a reader--
"I want to tell you about a pure silver protein that is more potent than any other on the market. It is called Germ Slayer and it is manufactured for and marketed by Aluwe International, Minnetonka, MN, USA.  I used to use Argentyn 23 and when I changed, I saw a big different in how I felt. Germ Slayer was recommended to me by my Family Medicine doctor. As you know, many people with fibro need to be checked for Lyme Disease. I attended the Fibromyalgia Coalition International Conference a year ago and listened to a doctor who is expert on Lyme speak about it. He feels that everyone with fibro should be tested since many really have Lyme rather than fibro; the symptoms being so similar.  Now here is the problem with testing. You probably know that they often do not show the disease despite its presence.  If you go to this link, the CEO of Aluwe has a Lyme update posted on the company website. http://www.aluwe.com/content/LymeDiseaseBreakthrough.pdfThere is a list of Lyme Disease symptoms on the website people can take to see if they may have Lyme. Here is the link. http://www.aluwe.com/content/lyme_symptoms.pdfPeople with Lyme, Fibromyalgia, and many other diseases benefit from the use of silver protein and this one deserves consideration because of its potency and purity and ready assimilation."
[I have been using Colloidal Silver on an as-needed basis for the past 7 years.  I was tested for Lyme last year, but it came back negative.  I have heard of people with CFS improving with Colloidal Silver.  It's a natural antibiotic--useful for many things.  Colloidal Silver is in my online store.  Please write dombush@bellsouth.net for the link.]
 
 
22.  WHAT MYALGIC ENCEPHALOMYELITIS (M.E./CFS) FEELS LIKE
   
Link sent by a reader--
What characterises M.E. every bit as much as the individual symptoms is the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. which include:

a. When you have M.E. you very quickly find out that you are unable to be
anything like as active as you were pre-illness. This is an acute change,
not a gradual one
; M.E. patients can only achieve 50%, or less, of their
pre-illness activity level immediately upon becoming ill with M.E.

b. As well as no longer being able to be as physically active as you were
pre-illness, you are also limited in a similar way with; cognitive exertion,
sensory input and orthostatic stress
.

c. Being active beyond your individual (physical, cognitive, sensory or
orthostatic) limits causes a worsening of all sorts
of different
neurological, cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, muscular, gastrointestinal and
other symptoms.

d. The level of physical activity, cognitive exertion, sensory input or
orthostatic stress needed to cause a significant or severe worsening of
symptoms varies from patient to patient, but is often trivial compared to a
patient's pre-illness tolerances and abilities.

e. The severity of M.E. waxes and wanes throughout the hour/day/week and
month. (Periods of intensive rest before events, and surges of adrenaline,
can also sometimes allow people with M.E. to do things beyond their usual
limits for a short time - albeit at the cost of future relapse and/or
disease progression.)

f. The worsening of the illness caused by overexertion can be acute, but
often does not peak until 24 - 48 hours (or more) afterward.

g. If you push past your individual limits too deeply or too often, the
effects of overexertion can also accumulate over longer periods of time and
lead to disease progression, or death.

h. The activity limits of M.E. are not short term (they are not being
perpetuated by 'deconditioning' - a gradual (or sudden) increase in activity
levels beyond a patient's individual limits can only cause relapse, disease
progression or death in patients with M.E.)

i. The symptoms of M.E. do not resolve with rest. The symptoms and
disability of M.E. are not just caused by overexertion, there is also a base
level of illness which can be quite severe even at rest.

j. Repeated overexertion can harm your chances for future improvement in
M.E. M.E. patients who are given advice to rest in the early stages of the
illness (and who avoid overexertion thereafter) have repeatedly been shown
to have the most positive long-term prognosis.

k. Not every M.E. sufferer has 'safe' activity limits within which they will
not exacerbate their illness, this is not the case for the very severely
affected.

This paper is quite detailed, but a condensed (half as long) version is also
available, and as always, both may be downloaded in printer-friendly Word or
PDF formats.

See
http://www.ahummingbirdsguide.com/whatmefeelslike.htm
 
 
23.  FMS/CFS IS A HYPOTHALMIC SLEEP DISORDER
Got this from a reader - very good info written by Dr. Jacob Teitelbaum http://www.healthy.net/scr/Column.asp?Id=672&xcntr=2--
Disordered sleep:  Most patients with these illnesses find that they are unable to get 7-8 hours of deep sleep a night without taking medications. In part, this occurs because hypothalamic function is critical to deep sleep. Unfortunately, many of the most common sleep medications actually aggravate the sleep problems by decreasing the amount of time spent in deep sleep. For patients to get well, it is critical that they take enough of the correct sleep medications to get 8 to 9 hours sleep at night! These medications include Ambien, Desyrel, Klonopin, Xanax, Soma and, if you don't have Restless Leg Syndrome, Flexeril and/or Elavil. In addition, natural remedies can help sleep. An excellent one (which I developed -Revitalizing Sleep Formula by Enzymatic Therapy -- 100 percent of my royalty for all products I develop is donated to charity) includes theanine, Jamaican Dogwood, wild lettuce, valerian, passionflower, and hops. Other natural sleep aids include Calcium, Magnesium, 5-HTP (100-300mg), and melatonin (3/10-1mg). Some patients find that over-the-counter antihistamines such as doxylamine (Unisom for sleep) or Benadryl can also help. In the first six months of treatment, it is not uncommon to sometimes need to take even six to eight different products simultaneously to get 8 hours of sleep at night. After 6-18 months of feeling well, most people can come off of most sleep (and other) medications. I'm starting to believe that, to offer a margin for safety during periods of stress, it may be wise to stay on 1/2 to 1 tablet of a sleep medication for the rest of your life. Your doctor may initially be uncomfortable with this. Nonetheless, our experience with over 2000 patients and 2 research studies have found this approach to be safe and critical to people getting well. When one recognizes that CFS/FMS is a hypothalamic sleep disorder -- not poor sleep hygiene -- this approach makes sense. Otherwise, it is as if your doctor would immediately try to stop blood pressure or diabetes medicines every time the patient was doing better!
[This is a merciful approach.  My FMS began in 1982 www.fms-help.com/fibro.htm due in large part to a sleep disorder that began in 1968 when I was 16.  I am now 55 and realize that I will probably have to be on sleep meds www.fms-help.com/sleep.htm for the rest of my life.  Although I am finally free of pain, fatigue and brain fog, my sleep disorder is still an issue.  It appears that my sleep clock is broken www.fms-help.com/insomnia.htm.  I have gone as long as 4-5 days without any sleep, and many months on just 2-3 hours per night if that.  Sleep meds are a merciful solution!  You cannot live without sleep.  Ever hear of Fatal Familial Insomnia - horrible!  Without sleep, you can't be healthy.   Your immune system fails and you become an easy target of all kinds of viruses and infections.]
 

24. DOM'S UPDATE
I have been feeling great since June 5 when I began taking some wonderful supplements suggested by my husband.  These past 33 days have been like a breath of fresh air for me!  I have felt like a normal person!!  I only had one down day, caused by getting extremely overheated in an un-airconditioned building here in Florida.  (My brain felt like it had been cooked!)  Aside from that, the other 32 days were great!  No pain, fatigue or fog.  What a blessing!  I even filed papers off my desk that had been accumulating for a year - I just didn't have the mental clarity before to tackle this daunting task.  Lots of other projects and things are getting done too. 
 
Life seems almost effortless now.  Cooking dinner, cleaning up the kitchen, paying bills, teaching, doing laundry, playing the piano for church - all no problem!  This must be how nnormal people feel!  No wonder they can accomplish so much and actually hold jobs.  Before taking these supplements, I felt like I was slogging through mud up to my neck every day.  It took Herculean effort to do the simplest things--or maybe I should say it was like rolling a huge boulder uphill all the time. 
 
I don't know if these products will help you, but they make sense to try, especially if what you're using now isn't helping.  I can send you the link to my online store and the names of what I'm using - write me at dombush@bellsouth.netI use a powerful antioxidant (which takes oxygen to the brain and cells of the body), another product I call "rocket fuel" (for energy), a stress formula (helps me unwind my mind and nervous system in the evening after a busy day) and a formula for lungs (my chest tightness, cough and breathing problems of 2-1/2 years duration is dissipating rapidly - almost gone!)  I have used SO many other supplements in the past that haven't made a bit of difference, but these actually work.....and quickly!  They are specially designed and very FRESH and potent!   I am greatly encouraged and hope all this wellness keeps on going!  I haven't pushed the envelope yet with something really stressful such as traveling.  Will let you know if I can get more than 25 miles from home.
 
Oh, one more thing - the visual and cognitive problems I experienced when driving or riding in a car are gone now - I can actually enjoy the scenery again!
 
Til next time, 
 
Dominie Soo Bush
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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.