Dom's FMS/CFIDS Newsletter
February 26, 2011
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
Topics in this issue - scroll down to read: 1. READERS WRITE "Thank you for
your newsletter and sharing your story www.fms-help.com/fibro.htm with me and thousands of others who suffer
from the spectrum of these
syndromes." "I especially
enjoyed the fibrowheel www.fms-help.com/fibrowheel.htm.
Succinct and accurate." "Thanks for your
newsletters. I can't believe how much information drops
into my mail box with each one." "So glad I found your web
page www.fms-help.com." "Thank you for all your information and
great website. It helps to give hope to those of us
suffering with Fibro." "If one person figures
they can make it through a day because of seeing something you
shared, then you have changed the world for that person." "
2. DR. DANTINI & ANTIVIRALS
From a reader--
"Re: www.fms-help.com/021911.htm (Topic 26) - I too participated in the study with Dr. Dantini 6 years ago. I also tested off the charts in EBV, CMV and parvo virus. I took the Valtrex for months and did not respond to it. I love Dr. Dantini, but before people spend their life savings going down there,( thinking they will be cured), just know--like all the other Dr.s I've seen, he had no other answers. Most of the tips and natural things he suggests to his patients, you have on your web site www.fms-help.com!"
3. SALT IS ESSENTIAL
From a reader--
"When the federal government released its new dietary guidelines on January 31, The Salt Institute issued a news release with this headline: “New Dietary Guidelines on Salt Drastic, Simplistic, Unrealistic.” We took a little heat from some journalists for that. So we read with interest the lead article in the February 16 Washington Post Food section titled, “The great shakedown. How a week of sodium intake ran my life.” We have to hand it to reporter Tim Carman, who spent seven days trying to follow the Dietary Guidelines’ draconian limit of 1,500 mg of sodium for most Americans adults. We know of no others who had the fortitude to attempt this exercise in culinary blandness and dietary denial. What follows are excerpts from Carman’s article , followed by commentary from us here at the Salt Institute (SI). http://just-me-in-t-health.blogspot.com/2011/02/salt-essential.html."
4. "DON'T DISTURB ME! I'M SLEEPING..."
From a reader--
http://dontdisturbmesite.com/index.php?option=com_content&view=section&layout=blog&id=12&Itemid=26 - This article is about melatonin and sleep.
FROM DOM: Melatonin is in my 100 Tips for Coping with FIbromyalgia and Insomnia at www.fms-help.com/tips.htm. I took a melatonin complex for several years, and it worked well for sleep, but somehow when I turned 47, I guess my hormones shifted (melatonin is a hormone too) and it stopped working. I then had to switch to sleep meds www.fms-help.com/sleep.htm, but frighteningly, they weren't working much either for me. It was an awful time for about 18 months. Then someone (fortuitously) told me about the immune balancing powder which I ended up taking for 8+ years. A few weeks after I began using it, the sleep meds started working and a lot of other good things happened with my health. The immune balancing powder doesn't claim to cure any illness or disease - just to balance immune function. It's a unique, high tech product developed by Dupont and Conagra approx. 25 years ago now. It works in the "gut" where 80% of our immune system is located. Write dombush@bellsouth.net if you want more info.
5. STOP DRUG ADVERTISING
From a reader--
"An Australian medical journal has 'stopped all drug advertising forthwith' over concerns it could unduly influence doctors, and has called on similar publications to do the same.
I wrote a comment to the publishers commending them on this action. Please do likewise if you feel it appropriate. http://news.smh.com.au/breaking-news-national/medical-journal-bans-drug-company-ads-20110203-1aev8.html."
6. THE BIGGER PICTURE
FROM DOM: Wow! I was reading II Peter 3:3-15 this week. There's a lot that pertains to our generation, I think....
"3 There shall come in the last days scoffers, walking after their own lusts,
4 And saying, Where is the promise of his coming? for since the fathers fell asleep, all things continue as they were from the beginning of the creation.
5 For this they willingly are ignorant of, that by the word of God the heavens were of old, and the earth standing out of the water and in the water:
6 Whereby the world that then was, being overflowed with water, perished:
7 But the heavens and the earth, which are now, by the same word are kept in store, reserved unto fire against the day of judgment and perdition of ungodly men.
8 But, beloved, be not ignorant of this one thing, that one day is with the Lord as a thousand years, and a thousand years as one day.
9 The Lord is not slack concerning his promise, as some men count slackness; but is longsuffering to us-ward, not willing that any should perish, but that all should come to repentance.
10 But the day of the Lord will come as a thief in the night; in the which the heavens shall pass away with a great noise, and the elements shall melt with fervent heat, the earth also and the works that are therein shall be burned up.
11 Seeing then that all these things shall be dissolved, what manner of persons ought ye to be in all holy conversation and godliness,
12 Looking for and hasting unto the coming of the day of God, wherein the heavens being on fire shall be dissolved, and the elements shall melt with fervent heat?
13 Nevertheless we, according to his promise, look for new heavens and a new earth, wherein dwelleth righteousness.
14 Wherefore, beloved, seeing that ye look for such things, be diligent that ye may be found of him in peace, without spot, and blameless.
15 And account that the longsuffering of our Lord is salvation."
FROM DOM: My testimony, "Religious But Lost," is at www.fms-help.com/salvation.htm. If I only try to help people with their FMS/CFIDS but fail to point them to the Savior so that they can have eternal life, then I have failed my Lord as well as those who trust me.
7. BHT INACTIVATES HERPES & SHINGLES VIRUSES
From a reader--
http://www.advance-health.com/bht.html - Snippet: "BHT is an antioxidant and common food preservative, approved by the FDA for food, oils and fats. Over 25 years ago, a paper was published in the journal Science showing that BHT could inactivate herpes simplex and other lipid coated viruses in vitro (In lab dishes). A few of the viruses that have a lipid envelope and may be affected by BHT include herpes simplex I, herpes simplex II, herpes zoster, ckytomegalovirus, west nile virus, HIV virus, influenza virus, hepatitis B and C viruses, avian flu influenza virus and the SARS virus. Remember that BHT has not been clinically tested and approved to treat these infections. Based on these early scientific results, some individuals afflicted with herpes virus infections began experimenting on themselves with BHT. They used dosages in the 250 to 3000 mg. per day range with the result that they experienced a reduction in herpes outbreaks. For some, their eruptions remained suppressed for as long as they continued to take BHT daily. For others, they were able to eventually discontinue taking BHT with no recurrences. BHT is discussed in Mann and Fowke's book "Wipe Out Herpes with BHT" and Pearson and Shaw's book "Life Extension". At issue is that none of the controlled studies on the antiviral properties of BHT have been performed on humans. Rather, most of the experiments have been conducted in the laboratory or on animals. In addition, BHT is a common, inexpensive substance that is unpatentable. No pharmaceutical company will invest money in researching and certifying its value as a medication. Furthermore, it may be difficult to perform human trials because the Food and Drug Administration (FDA) has approved BHT for use only as a food preservative, not as a medicine."
FROM DOM: For the viral aspects of FMS/CFIDS, since Aug. 2009 I have been using oxygen drops in my water (which raises pH) & DMSO cream which inhibit the herpes virus - in my case, cold sores (herpes simplex) and shingles (herpes zoster). The drops are called Oxygen Force at http://neveranoutbreak.com/oxygen.php? partner=FM5H1PDB. I also take Acyclovir (anti-viral) daily. I've been able to avoid viral illnesses this way, which were once my nemesis www.fms-help.com/fatigue.htm (my CFIDS story).
8. READERS' PRAYER CORNER
Reader D.S. (has FMS/CFIDS and other serious health conditions) - his 92-year-old mother passed away this week, and his wife's mother is ailing with alzheimer's. Please remember this family in prayer.
9. XYREM / SODIUM OXYBATE / GHB - FOR SLEEP
From a reader--
"This is a reply regarding your last newsletter www.fms-help.com/021911.htm (Topic 4) - I also tried some of the meds you have including Sodium Oxybate which really worked, but then after the first updose, I needed another and they would not give it to me and also about that time, I started having rashes on the most sensitive skin locations - so I had to quit that Fibro study. During that time, I was forced to quit work for 2 years."
FROM DOM: Much on GHB and Xyrem in past newsletters. Search using the Google box at the end of this page.
10. FEELING COLD
From a reader--
"I find it hard to deal with weather changes due to the high barometric changes, damp or cold weather. Even though we are in Florida, I fearfully dread the Winter as if I had to work 100 hours per week - would rather live without it. Even if my house is 70 degrees, it feels like 40 to me or lower. I often sleep directly on an electric mattress pad so my back will feel the full heat (the material is a manmade lambs wool). I put it on high, then lower it to the low level and then turn it off about an hour after I lay down. I also use it during a mid day nap sometimes."
FROM DOM: I am the same way. I was raised in the freezing north (NJ, PA, NY), but moved to FL as a young adult. I think my body has adapted to the warm, humid climate here, and I feel VERY cold in the house in the wintertime (which can be in the 20's and 30's) - we keep our house at 68 degrees in the winter. I often sleep with a heating pad across my chest (over my heart), and my husband even bought me fuzzy pink gloves and socks to wear in bed to keep me warmer. In the summer, we keep the air conditioning at 77 degrees (outside is in the upper 90's and dreadfully humid!) I sweat ("perspire") profusely when it is hot and humid. We get terrible storms with thunder and lightning and 4-8 inches of rain per day. The barometric pressure goes crazy (hurricanes approaching) and that makes our bodies become very symptomatic too for reasons probably known only to scientists and medical researchers. A chiropractor told me years ago that our bodies are 62% water, and that is why barometric pressure affects us so much.
11. CHEMTRAILS
From a friend--
What are they spraying on us?
http://www.youtube.com/watch?v=eJi2L4QC_fk
http://www.youtube.com/watch?v=XOLUHB3Jmq4
12. DENTAL ADVENTURES
From a reader--
"I too am a dental chicken, but I think we have good reason for that. We are undoubtedly hyper-sensitive to pain, and the extreme pain of dental work can set off a real fibro-flare. I have the most sensitive, caring dentist in the world - he uses a topical anesthetic before the Novocain injection, "happy" gas and even headphones with nice music to minimize the drilling, but it can still be like torture for me. I haven't had any major work done in about 5 or 6 years and dread to ever have any again."
FROM DOM: Interesting visit with my internist this week. I went to ask him about anesthesia used at the dental office and if it will conflict with the meds I'm on www.fms-help.com/what.htm. My doc surprised me by suggesting that I have my mercury fillings removed. He said many of his patients reported improved health after doing so, especially anxiety conditions. However, I don't even have the money to have this needed dental work done (crown to replace cracked molar filling). My mail runs 50/50 about whether removing amalgams helps my readers. I am still looking for a gentle, caring, sedation dentist. Have plans next week to talk to one in our community. I don't want to make my 24/7 tinnitus any worse from drilling. I have hypersensitivity to noise, light, pain, etc. - but there appears no way around it. My internist suggested taking 2 lorazepam tablets before the procedure, done with nitrous oxide. He also suggested that I try melatonin again for my sleep disorder. I told him it worked for 3 years and stopped working when I was 47 (I am now 59). He said I could have gotten a bad batch and to try again, using melatonin from a large, reputable company. My cirdadian rhythm is off (since I was 16). It seems to push my sleep time farther and farther back until I'm pretty sure (left to my own devices) that I could easily reverse my days and nights altogether. I am TRYING to go to bed earlier (get off computer earlier) and get up earlier (write the newsletter in the AM instead of after work in the PM), but my body just won't do it. Because I work afternoons and evenings www.fms-help.com/students.htm until almost 9 p.m., I need "wind-down" time when I get home, which is usually when I write the newsletter and do the laundry. I just can't take my sleeping pills and fall into bed. In the old days people would say, are you a day person or a night person. Evidently I've switched over to becoming a night person. BTW, I never feel "sleepy." I just start feeling "ill" and that's when my body is saying "enough" - take your sleep meds and go to bed.
13. OCCUPATIONS & FIBRO
From a reader--
"I have just been diagnosed with FMS [plus other major disorder] and having very difficult time. Doctor said most people like me take early retirement or disability. I need to work, but I'm not on my game anymore at all & may not be the big money maker any more for my firm. Very confused, looking for coping skills & any advice I can find."
FROM DOM: I'm sure most of us can relate to this reader. It is very hard to lose ones health, career and livelihood www.fms-help.com/losses.htm. I share some of my feelings about losing my job to fibro at www.fms-help.com/interview.htm. Readers' occupations (or former) are listed at www.fms-help.com/occupations.htm. Some helpful ideas for this reader are at www.fms-help.com/tips.htm and www.fms-help.com/what.htm.
14. MANNA
FROM DOM: I received these interesting throughts from the creative, anonymous author of the Fibrowheel www.fms-help.com/fibrowheel.htm--
"I have been in a position where I have tried to avoid getting the [fibro]wheel spinning. The problem for me is that doing anything causes the rotation to start. Interestingly, I recently figured out that doing nothing can also get it moving (staying in one place too long causes my joints to lock up). So this means I need a combination of activity and planned recovery.
One of my great personal challenges has been scheduling. It was causing my terrible angst to agree to do something simple like go to a friend’s home for dinner, a business meeting, even rehearsal or church was stressful to plan. The reason is that I have no idea how I will feel at the moment it is time to leave the house to do whatever was scheduled.
I am now doing something I call the Manna Program. I have officially relieved myself of all stress that precedes a scheduled event; in fact I will not allow myself to process the thought that it could be impossible for me to attend based on having a bad day. What this does is pulls all of the stress and worry out of the time leading up to the event. Last week, I had a personal engagement and for the days that led up to the event I felt terrible. On the day of the event, I felt even worse. But I was committed to finding the manna I need for that day on that day at the hour I need it. Either it shows up and I can go, or I have to apologize and back out. This seems to be working. Instead waiting until I feel good to go for a walk, I just head off down the court and usually at some point while I am out there walking I start to feel a little bit better. I carefully schedule when I walk so that if it produces “recovery time” (a positive word rather than a negative look at painful downtime) it will not step on a different commitment. For me, this is a solution to an otherwise inescapable sense of dread.
I have been waiting until I feel better, or recover to re-engage in life. I have discovered a positive way to look at this – I am now re-engaging anyway and when I hit a stop point I take recovery time. I also schedule recovery time for example I don’t plan anything for Sunday as the church worship experience tires me out. I am finding the recovery time is less the more I do things and then force myself to go through it. The challenge is all about perception of pain and recovery. The difference now is that I know there will be pain in the process of engaging and in the recovery but am trusting there will be enough manna during the activity to get me through. I can trust for today, I can plan for tomorrow, but I need to actively trust for tomorrow and not just plan for it. (It helped that we had two days in the 70’s and things felt a lot better than when freezing cold fronts are on the way but the idea behind this is motivating to me.) Probably not a new thought to you but it opened my eyes. What affects the body does not have to crush the spirit if you can find a way to think about things differently."
FROM DOM: I could sure relate to all of this! In my case, I didn't understand why God had made it so that financially I had to keep working, despite the horrible condition I was in. But mercifully He allowed the job to be a mile from my home and I could make my own hours. That helped greatly. Still, there were many days I didn't think I could make it. What's strange is that some days I felt fairly well, but much worse at work - other days it was vice versa. I finally determined that I would just try to get my physical body there, and not worry about how I would make it through the day. Somehow God made it possible - but it can be nerve-wracking to not know if you can fulfill your duties. It boiled down to just trusting from day to day (manna!) .... and frankly, sometimes minute to minute. It is impossible for me to work anywhere with a long commute and I could never work an 8-5 job due to the sleep disorder I've had for 43 years now, but God let me have a job that was custom-designed for me. Although extremely difficult at times, it was still do-able, leaning on Him! He knew that my income remains necessary for the necessities (not luxuries) of life. Little by little, God sent various helps to me as I kept seeking, praying and experimenting. I had MANY times of utter discouragement, tears and despair, but there was no choice but to keep going forward with life (a "new normal" as Don Piper calls it in his book "90 Minutes in Heaven.") My regimen at www.fms-help.com/what.htm continues to keep me functional at an adequate level.
15. THOUGHTS ON SUFFERING
More from the Fibrowheel author, who wishes to remain anonymous--
"I struggled just trying to understand suffering Biblically; some churches do not believe it is possible, yet Paul was a pretty tough guy and wrote at least half of the new testament and yet he sought the Lord three times for some kind of suffering he was wrestling with. The disciples were tortured, they and other believers were murdered for their faith both then and now in some places of the world. My personal pain level has put me under but I have yet to sweat blood – even Jesus suffered. At the end of my contemplation I came up with two things about suffering that seem to be universal to the Christian experience: · It gets your attention to the extent where you are willing to change. With enough heat you will either seek shade or ignite. Sometimes we need to change ourselves in ways we might otherwise never find the motivation or discipline to accomplish. Suffering can take a proud person and humble them quickly. There are lots of changes in my desert experience and this is the part I would never go back and do differently. It changes my outlook on everything. I have found links between things I never noticed before and either it drives you away from the Lord or draws you closer, but you will change. · The second part I see reflected all over your website www.fms-help.com, and that is to walk this journey there must be some kind of compassionate imprinting that equips you to help others who are lost without a map in a place they never intended to find themselves in. If nothing more than offering practical help and letting people know that you have been where they are today and there is some hope – it makes all of this worthwhile. We have been conscripted into service without our permission and we can either find new compassion for others or we can harden ourselves and duck into a shell. In either case, change has been thrust upon us and in the end this is probably a good thing. Depending on how things turn out with the world news and the end times, one could argue that all of this was allowed so that we can find the will and the means to do what you described – to count on the manna and face another day without any preconception of the intensity of the challenge it would bring with it. Lance Armstrong once said that the best thing that ever happened to him was cancer. He took himself from a trailer park in Texas to winning the hardest physical challenge in sports. After cancer, he learned to address the French reporters in their native tongue and discovered a new respect for people who struggle. His foundation is the direct result of what he decided to do about what happened to him. Many famous people have become alarmingly sober when confronted with the opportunity to change due to unexpected physical conditions. So one thing we share in common is the knowledge the change is one indicator you are still alive. If this is the case then your mission here has not yet been completed. I am looking forward to how your internist reacts to the Fibro wheel. Thanks for your courage to do that. My Holistic Chiro could not take his eyes off of it. Every time I see him since then he has new questions about it. The traditional doctors I see have not had the same reaction though although my pain management doctor examined it quite carefully and now keeps it with my chart. I think it takes someone with an understanding of lots of interrelated systems to make medical sense out of it rather than to just dismiss it. It is certainly imperfect and perhaps relates to my situation better than to another person’s but there is something real that gets that wheel spinning."
16. THE 24 GENE & CIRCADIAN RHYTHM
From a reader--
http://www.consumeraffairs.com/news04/2011/02/why-waking-up-is-hard-to-do.html - Snippet: "If “five more minutes” is paart of your normal morning routine, you can blame it on the absence of the “24” gene -- one of the core genes of the circadian clock. The circadian clock drives -- among other things -- when an organism wakes up and when it sleeps. According to new research, the absence of the gene confuses the rhythm of the common fruit fly’s sleep-wake cycle, making it harder for the flies to wake up. The research, published in the journal Nature, has implications for humans."
17. SCIENTISTS CAN ANNOUNCE THEIR STUDIES HERE
From a reader--
"Medical researchers from Ottawa and Britain want all their colleagues to tell the world what studies they’re working on. They indicated that the left lab doesn’t know what the right lab is doing. That applies to new drugs, how to vaccinate in a flu pandemic, research etc. 'And so there is no place in the world where you can go and see who’s doing what in the world and what’s going on.' States Dr. David Moher of the Ottawa Hospital Research Institute. There is much duplication in systemic reviews and money wasted on duplications which could be spent on useful work somewhere else. Dr. Moher and colleagues in Britain have set up a website where scientists can announce their studies in the earliest stages at no cost to prevent such waste. An open access website is to start operating today (February 22, 2011) at the University of York in England at http://www.crd.york.ac.uk/prospero. - Reporter, Tom Spears, Ottawa Citizen, February 22, 2011 - Read more: http://www.ottawacitizen.com/technology/Share+knowledge+health+researchers/4322259/story.html#ixzz1EguFEwCQ."
18. SLEEP WITHOUT MEDS
From a reader--
"I have been suffering insomnia for 2 years and depending on Ativan and Ambien to sleep. I finally saw a sleep doctor at the med center here in Omaha and I have to use a little monitor for six weeks so they can tell what my sleep patterns are. Then they say the treatment is biofeedback, relaxation techniques and therapy. I just want to be free of the medicines."
FROM DOM: Me too. I hope this reader will keep us posted on how she does with the sleep monitor and treatments. I've had a sleep disorder since I was 16 www.fms-help.com/insomnia.htm. I am now 59. A list of things I tried for sleep is at www.fms-help.com/sleep.htm. A list of things I use now is at www.fms-help.com/what.htm - and I do get restorative sleep most nights now with meds. I had life-wrecking insomnia for decades, so I am just so glad for meds that help me sleep. I have tried many other avenues without success. However, if you are able to find a way to get your sleep function back, that would be WONDERFUL! Personally, my sleep clock is broken. I think that if I ever retire and have a week or two with NO RESPONSIBILITIES whatsoever, I could try to see what my body will do on its own. My guess is that either I wouldn't sleep at all (which has happened for days on end in the past), or my circadian rhythm, which is out of whack, would push my bedtime later and later until I would have my days and nights reversed. Not bad if you are a 3rd shift worker, though (ha). Seriously, there is nothing funny about a sleep disorder - it's a form of torture!
19. "AH-CHOO"
FROM DOM: Need a chuckle? I got this excerpt from a reader about a book called: "AH-CHOO! The Uncommon Life of Your Common Cold" by Jennifer Ackerman. It can be purchased at http://www.amazon.com/Ah-Choo-Uncommon-Life-Your-Common/dp/044654115X/ref=sr_1_1?s=books&ie=UTF8&qid=1298435570&sr=1-1. Below is an entertaining excerpt from the first chapter - about signing up for a cold study! Loved it!
CHAPTER ONE - IN COLD PURSUIT
One Monday in October, against the counsel of friends, I applied to catch a cold. Five weeks later, on Friday, the 13th of November, tucked away on the seventh floor of a three-star hotel, I open up my nose to assault by a virus and wait.
It's the peak of the swine flu epidemic. Colleagues, friends, and family are succumbing one after another to the feverish misery of H1N1. After weeks of scrupulously avoiding the sniffling masses, I actually invite infection, opting to join a select group of subjects taking part in a cold study at the University of Virginia. The plan is to check in to a local hotel on a Friday afternoon, have a common strain of cold virus injected into the nose, and then hunker down for the weekend, waiting for cold symptoms to develop.
My family thinks I've gone off the deep end. My plan elicits this merry note from my dour sister: "You know our family. It'll go straight to your chest." One friend dubs it my weekend "frolic at the rhinovirus festival." "Chin up!" he says. "That way your nose won't drip." Another friend takes a darker view. "I'll keep you in my prayers: Death by cold is one of my greatest anxieties."
Death by cold?
It's a strange thing to anticipate even mild illness, to know that in a few days viral lightning will strike. It's like awaiting the arrival of a massive snowstorm or a hurricane. There's that sense of urgency, of the need to get things done before you're under the weather and not feeling like doing much more than hanging around in your bathrobe, nursing a cup of hot tea. What kind of people normally go in for this form of weekend entertainment? As far as I can tell, mostly young male students.
The researchers have set up shop in Room 726. Oddly enough, there are no signs in the lobby, "WELCOME VIRUS STUDY SUBJECTS!" But when I reach the seventh floor, the hall is lined with boys and their backpacks in cold pursuit of three free meals a day, a clean bed, and a $600 fee. I look around for one young man I met earlier at the screening for this study, a big guy with tattoos and what sounded like serious congestion. The screening took place at around 9 a.m. on a Monday morning. When the nurse asked this fellow if he had a cold, he said no, he wasn't sick; he had just been "playing outside in the cold all morning, since 3:30 a.m."
Oh, and what was the game?
"Setting traps for animals."
There are a few outliers. As we're checking in with the study nurse, I ask the middle-aged woman in line ahead of me whether her family thinks she's crazy to be participating in this study. "Oh no," she says cheerily. "In fact, I've brought my 18-year-old daughter"--the dark-haired beauty sitting with the nurse to the right of us, awaiting the results of the routine pregnancy test. "This will take care of Christmas. My husband would have come, too, but he works for Student Health, and that created some kind of conflict of interest." A couple of years ago, she joined another such study in order to give her daughter a bang-up sweet sixteen party.
With the help of willing subjects such as these, researchers can probe the basics of a disease and also try out remedies. At a hotel up the road from ours, similar studies produced the flu drugs Relenza and Tamiflu. The flu studies are the really lucrative gigs. Nine days of isolation in a hotel room with a nasty case of flu will net you $1,750. One such opportunity recently drew a married couple who participated sequentially. First the wife got the flu (while the husband cared for their three boys) and then her spouse did. This--18 days of combined illness--so the whole family could take a $3,500 vacation.
It's money hard earned. There's the sledgehammer of the flu itself. Then there's the isolation in a hotel room. Nine days is a long time in one room, even under perfect conditions. And conditions are not always perfect. Once, lightning struck the hotel, and the electricity went out for three days. No lights, no television, no coffee pot. The hotel staff had to carry food for 80 subjects up five flights of stairs from the kitchen in the basement; meals were a little less than punctual and a lot less than hot. For entertainment, younger subjects resorted to saving up their fruit from dinner and bowling with it in the halls.
Another time, a fire in the elevator shaft prompted a hotel-wide evacuation. The study participants stood around in the icy parking lot in their slippers and pajamas, wearing masks, while the rest of the hotel guests gawked.
Our three-day stay is easy by comparison. Still, it feels strangely surreal, like a hybrid of holiday, hospital, and prison. During these three days, we can't leave the hotel for any reason (unless we drop out of the study and forsake our fee), which prompts young Tom Jackson in the room next door to mutter from his doorway, "I feel like I'm in 'The Shining.'" We're not even supposed to wander down to the end of the floor, where regular guests are lodged (one would hope at a deep discount). And, of course, we have to submit to a litany of nasal exams, nasal washes, and nasal sprays at all hours of the day and night."
[What a great writer! Buy "Ah-Choo!" at http://www.amazon.com/Ah-Choo-Uncommon-Life-Your-Common/dp/044654115X/ref=sr_1_1?s=books&ie=UTF8&qid=1298435570&sr=.]
20. INSOMNIA & DEPRESSION
From a reader--
"Thanks for all your tips on insomnia www.fms-help.com/sleep.htm. I read with interest your dealings with antidepressants. I have had depression for 2 yrs now but the docs tell me I can cure my insomnia apart from the depression. I have tried 11 medications – plus lots of therapy. Therapy did nothing. The next med the doc was going to prescribe for me was Remeron!! I have had a bottle of Luvox for a week now and am so afraid to take it. Haven’t take one yet. I have had scary reactions like you. One Sunday I thrashed around in bed and thought I was going to die…That was after Zoloft, I think. Doc game me permission to take two Ativans at a time that day. I am not me…this is not me…I feel this miserable sadness, pessimistic thoughts, and worry 24 hrs a day."
FROM DOM: My sympathies!! I have battled insomnia, anxiety and depression most of my life. It all began with a sleep disorder when I was 16 www.fms-help.com/insomnia.htm. I am now 59. The answers I found for my own situation were both nutritional and pharmaceutical. My personal list of what helps me is at www.fms-help.com/what.htm.
21. PROMISING NEW CFS STUDY
Reader 1--
http://news.yahoo.com/s/ap/20110223/ap_on_he_me/us_med_chronic_fatigue_clue - Snippet: "Scientists have discovered proteins in spinal fluid that can distinguish people with two mysterious illnesses that mimic each other — chronic fatigue syndrome and a kind of chronic Lyme disease. Wednesday's study is small and needs verification. But specialists called it a promising start at clearing some of the confusion surrounding two illnesses with similar symptoms and no good means of diagnosis."
Reader 2--
"http://www.cbsnews.com/video/watch/?id=7357544n&tag=mncol;lst;2 - Last night there was a great video on CBS news on Chronic Fatigue Syndrome and the discovery of over 700 Protein Markers in the spinal fluid unique to CFS patients."
Reader 3--
"Breaking News - CFS will be featured tonight (Feb. 23) on "The CBS Evening News with Katie Couric." The report focuses on a new research study on biological markers found in the cerebrospinal fluid of CFS patients described below. The University of Medicine and Dentistry of New Jersey circulated an embargoed press release and the CFIDS Association helped media outlets, including CBS News, to interview patients and experts about CFS and the study. The embargo lifts at 5:00 p.m. (EST) today and we are pleased to bring you immediate analysis of this study and its results.We'll recap media coverage in the next issue of CFIDSLink."
Reader 4--
"Here’s the second video from the CBS Morning Show. http://www.cbsnews.com/video/watch/?id=7357605n&tag=mncol;lst;1. It seems like the ‘test’ and the ‘cure’ is far-far away, but at least there is new validity and new hope."
22. IS THE WAY YOU ARE EATING DAMAGING YOUR BRAIN?
From a reader--
"The harm of low-fat high-carbohydrate diets in cholesterol uptake in the brain. http://just-me-in-t-health.blogspot.com/2011/02/is-way-you-are-eating-damaging-your.html."
23. GUMS & CROWNS
From a reader--
|
http://www.dailymail.co.uk/news/article-1359865/New-Zealand-earthquake-The-moment-Christchurch-shook-pieces.html) Made me think of Matthew
24:6-14! |
7For nation shall rise against nation, and kingdom against kingdom: and there shall be famines, and pestilences, and earthquakes, in divers places.
8All these are the beginning of sorrows.
9Then shall they deliver you up to be afflicted, and shall kill you: and ye shall be hated of all nations for my name's sake.
10And then shall many be offended, and shall betray one another, and shall hate one another.
11And many false prophets shall rise, and shall deceive many.
12And because iniquity shall abound, the love of many shall wax cold.
13But he that shall endure unto the end, the same shall be saved.
14And this gospel of the kingdom shall be preached in all the world for a witness unto all nations; and then shall the end come."
29. VALENTINE'S DAY FOR MOLD PATIENTS
From www.survivingmold.com newsletter--
"Imagine the scene on Valentine’s
Day. One spouse is chronically ill and the other isn’t. “Let’s go out for a nice
romantic dinner,” isn’t going to be a winning suggestion when one person is dead
on the couch by 7 PM. The healthy spouse might say, “What is wrong with you all
the time? Surely, you can spend a little time with me, just for once, like in
the old days.” While the affected spouse might mount a super effort to grab a
glimpse of a pre-mold life, he/she will pay for that glimpse for several days
afterwards. Just like he/she pays for the trip to the high school play Friday
and Saturday night to see the daughter sing or the trip (“Just for a short
visit”) to Grandma’s moldy home on her birthday. You can fill in the list of the
extra efforts that mold patients pay for that non-mold patients feel is just a
routine part of life.
There almost is a sense of
jealousy, certainly of loss, when someone bounds up the high school stairs, like
the mold patient once did, without becoming short of breath or having aching,
crampy pains in legs, hips and back. Or when someone can go into a school and
stay there, learning like we all want him to, not sickened by whatever
bioaerosols are torturing one’s nose.
It really isn’t fair, you
know.
Valentine’s Day
surely is emotionally and physically better if your loved one knows what is
wrong that makes the other’s illness never leave. If one knows what is wrong,
the Valentine’s night date still might not occur (substituting a romantic pizza
delivery happens more often than one might think), but the possible rift in the
marriage might not be so pronounced. The “Spouse’s Tale,” when combined with
awareness of objective parameters that show the reason one can’t just bound up
stairs like a teenager, often becomes one of solidarity and support, leaving
behind the predictable doubt, suspicion and mistrust. This change is not a small
measure when no hope for cure is on the horizon."
FROM DOM: www.survivingmold.com is a top notch site (Dr. Ritchie Shoemaker). My health collapsed in 2004-2005 after working for a year in a mold-filled, hurricane-damaged building. Read my mold story at www.fms-help.com/mold.htm. I think that many of my readers may be occupying "sick buildings" (homes, offices) and mold is interfering with their immune function, causing viral illnesses, respiratory problems, allergies, malaise, exhaustion, mental fog and general illness.
100 Tips for Coping with Fibromyalgia &
Insomnia
II Corinthians 1: 4 - "[God] 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.
