DOM'S NEWSLETTER

PLEASE READ TOPIC #17 BELOW CALLED "WEIRD STUFF" - I URGENTLY NEED YOUR FEEDBACK! THANKS SO MUCH! - Dominie

1. READERS WRITE

"Thank you for your website www.fms-help.com. What a breath of fresh air."

"I am still using the [oil you told me about] to help me sleep. It has been 3-1/2 months since I started using it and it is a fantastic product. After 11 years of insomnia, this oil is amazing. It could stop working tomorrow, who knows, but so far, it has been incredible and I could not do without it. I have tried once in a while going without it to see what would happen and, sure enough, I go right back to being unable to sleep. Thank you so much for putting me on to this wonderful product."

[For a list of things I've tried for sleep--some successfully, some not--see www.fms-help.com/sleep.htm. We are all different biochemically.]

2. NERVOUS SYSTEM & FMS

From a reader--

"I have been in so much pain!! I went to 2 doctors both said they don't know what to do with me because I keep getting worse. I pray that someday I will beable to live in less pain. I have a question for you I got an email and it said that they think they finally know what fibro is. They said it's a chronic, neurologic disease. Have you heard that?? What do you think about it?? Your opinion matters greatly to me and I have been wondering if you heard it and what you think."

[Yes. I think this is at least part of the puzzle. See my comments about the nervous system and FMS at www.fms-help.com/nervous.htm and www.fms-help.com/autonomic.htm. About pain, I have been 95% pain free for the past 10 years. There's a list of things that help me at www.fms-help.com/what.htm - scroll down to the PAIN section.]

3. WHY YOU SHOULD NEVER TRUST NEW WONDER DRUGS

4. FIBROMYALGIA: SHOW ME WHERE IT HURTS (VIDEO)

[Has anyone tried this approach of meds and supplements by Dr. Patrick B. Wood?]

5. PROVIGIL (MODAFINIL)

(revisited from past newsletters - use the search box at www.fms-help.com/newsletters.htm to find references on my site)

From a reader--

"This is so weird! I have been given Provigil samples from my psychiatrist.

I have constantly said if I take even 1/4 of the pill it not only lifts my spirits but it really gives me some energy.

I have never taken the whole pill because just a small amount gives me a big boost.

My insurance will not cover it because I was told it has only been approved for Narcolepsy.

My Dr. even called my insurance company and told them that this drug really seemed to help me.

I had not really thought about it so much until just now, because of all the unpacking and moving I took some to help the energy.

It truly makes me feel very mentally alert, upbeat and also throws in the real plus of energy.

I was on the web to see if anything had changed and WOW - I see they are using it on fibromyalgia.

This would be a Godsend to at least me and maybe a lot of others. See http://www.provigilweb.org/fibromyalgia.htm"

6. ANTI-DEPRESSANTS

[revisited from www.fms-help.com/020307.htm]

From a reader--

"I noticed a comment about the negative side effects of an anti-depressant, and thought I'd respond. I've taken them for major depression, not specifically FM, and while I'd rather not need them, when they work they can save your life. It's not uncommon that they can also reduce FM pain.The best one for me has been nortriptyline. While it's caused some weight gain and digestive problems, it sure beats the alternative. It's probably best not to judge any drug on the basis of its effects on people who are prescribed it when they don't really need it. (And not everyone finds the right drug even if they do need them.) Antidepressants are for major depression a serious illness, not just feeling bad."

[For nearly 2 years after my father's death www.fms-help.com/eulogy.htm, I had to take Lexapro. Just could not function. I was mentally, emotionally, physically and spiritually depleted. God finally healed me of my grief when my husband read me a book called 90 MINUTES IN HEAVEN by Don Piper. But the Lexapro was a blessing when I needed it--and I think when people need antidepressants in order to function, it's a merciful medication. The only problem is that it's hard to find one that works without awful side effects. Many years ago I took Prozac for 3 days for help with sleep/depression. I had horrible nightmares every night and had to quit - see http://www.dailymail.co.uk:80/pages/live/articles/health/healthmain.html?in_article_id=434241&in_page_id=1774 about Prozac dangers. I tried many other antidepressants over the years for sleep and depression, all with bad - even terrible - side effects. What I'm taking now is Omega Blue from my site at http://dom.younglivingworld.com - a fish oil formula - at the suggestion of my sister-in-law with a Ph.D. in virology.]

"My dear Dominie, I have had Fibro/chronic fatigue for 18 years. Your letter slapped me right in the face. When i started getting ill. I was working full time for 4 orthopedics, convesent hos at sat nite, and going to school 2 nights a week for my nursing degree. It struck me that the house that I was living in, had mold all in the closet, from top to bottom and i slept there with my daughter and baby granddaughter. I am 57, my daughter is 38 and now she has everything I have. there was a time I thought of suicide because of the pain. My poor girl hurts so bad. The house was wet and black andmoldy and I had to quit everything I was doing. Yes you can get disability for firbo years ago they didnt recongize it but now they do. I am now sleeping with a bipap for sleep apnea and it honestly saved my life. I couldnt breath or sleep, I was exhausted all the time and yawned constant;ly. Think about going to a sleep lab and check your breathing at night. I would stop breathing 16 times an hour. I feel great now with this machine. talk to a pulmonologist? and get to breathing right."

Reader #2--

"I find the mold connection very interesting. I've had chronic sinusitis for years if not decades and a recent report from the Mayo Clinic has found that up to 96% of people with sinusitis have fungi spores in their nasal passages (fungi translates to MOLD). Given that that's the case...I would bet that there's a huge number of us constantly fighting the reactions to mold."

Reader #3--

"Since FM and CFS are "trash-can" diagnoses (throw everything in there
that doesn't fit elsewhere), I would cautiously say that it might behoove
you to check out the work of Dr. Ritchie Shoemaker, in his book "Mold
Warriors", and through his site, "www.moldwarriors.com".

To try to say it very briefly:

- People suffering from biotoxin poisoning (including mold, Lyme and other
things) exhibit symptoms VERY similar to FM/CFS.

- Dr. Shoemaker has discovered a series of tests (blood, vision, genetics
and others) that can determine whether you are suffering from a biotoxin
illness. As mentioned before, there ARE no such tests for FM/CFS.

- Dr. Shoemaker has also discovered a treatment regimen which has been
shown to REVERSE the abnormal test results, and this reversal correlates
with a reduction or elimination of symptoms!

- For a confirmation of the effectiveness of his treatment, you can consult
our very own Dominie, who has had some pretty good results from following
Dr. Shoe's treatment protocol."

8. MORE RESPONSES TO COLLEGE FRIEND'S LETTER ABOUT FMS/CFIDS

[revisited from www.fms-help.com/020307.htm - Topic #20]

"I too am guilty as charged. I am always the one in charge of EVERYTHING! I take on my family and friends problems to the point that they can become my own. Everyone always expected so much from me all the time. They made me feel like it could not happen unless I was there to make it happen. And for myself, I am a perfectionist. I am my own worst critic. I would work late, come early and step into five different positions outside of my own to make it happen. I was an event planner and it would take all of me sometimes. Everything would become personal to me. Unfortunately even now that I am sick some folks can't help themselves but to put me in to same shoes I once was able to wear well. They put it on me and walk away knowing I will take care of it. I will and then I will also have a flare up. Then where are they?"

"I'm just so confused, I just don't know anything about this anymore, except I hate the day I got sick."

"This describes my life To a T. I was always the one that did it, I took care of everything, handled everything..........helped everyone.......... Worried about everyone else.......and very seldom had much time for me. But this was ok....... I happy as long as I was busy. I worked full-time and sometimes more.....I had one daughter.......I had to have my house immaculant.... my mom needed baking donations for the church.....I would sometimes donate 8-10 cakes I had made in one evening. My ex didn't cook, I did. My ex didn't do housework, I did. My mom needed a ride.....I gave it to her. I don't regret any of it....but I do regret not taking enough time for myself? Especially if this is part of what has made me sick? I still work 35 to 40 hours a week now....but I am tired. I am almost always tired? They diagnosed me with fibromyalgia a few years ago now and last year now with osteoarthritis in my hands. Other than this I have had great health my whole life and still don't wanna accept what has been dealt to me. This letter just related to me so much I had to write you back."

"Would this person write these statements if she had HIV or Cancer that she got better from? I find it hard when people assume what works for them in any aspect of life will work for another, but I remember being that way when I was in my 20's and not as wise. I also know that since so many people have been down right horrific in treating CFIDS and fibro as not real illnesses, that whenever people even suggest something like that, I get ready for battle! Also some people are diagnosed with fibro who are just a tiny bit inconvienced or have some slight symptoms and there is no comparison to someone who is really sick and just completely devastated by it. It's like someone who has stage 1 cancer, who never even gets sick compared to someone with stage 4 who just rots away and dies a terrible death. Those two people can't even compare their experiences and yet, alot of people who have just one cancer cell who have never been sick will claim to know how to 'beat' cancer. Illness brings out alot of interesting reactions in people and alot of drama."

9. FRAGRANCE ALLERGIES

From a reader--

"Let's talk about fragrance allergies in your newsletter sometime. It is
one of the '50 signs of Fibromyalgia' that you published a few years ago www.fms-help.com/signs.htm.
There must be others who are dealing with this terrible problem. I can't
even be around friends who are wearing cologne anymore. And they just don't
"get it"--they leave the perfume off for me, but their clothes still reek of
it, so it doesn't matter. It's all become much worse since my long-term
mold exposure in my condo."

[Comments, anyone?]

10. PRESCRIPTION DANGERS

This cartoon video would be funny if not so true!
http://www.cafeoflifepikespeak.com/Videos/Licensed%20To%20Pill.swf

Write me at dombush@bellsouth.net for info on a product which safely reduces the acidity of your digestive system. An acidic environment allows yeast and fungus to thrive. Fungi, such as candida albicans, can create body-weakening mycotoxins as part of its life process. A balanced pH allows the body to maintain vigor and health. (I used to use mineral sachets, but this sounds like it might be even better.)

12. ZICAM FOR COLDS (PRO & CON!)

"I cannot use any "quil", night or daytime. I stumbled on Zicam while waiting for my meds at the pharmacy and thought it worth a shot the next time I felt the sniffles &/or scratchy/sore throat. The results were AMAZING!! I do take a series of Echinacchea & Golden Seal immediately when symptoms of a cold are apparent. These supplements definitely help. I MUCH PREFER to minimize ingesting pills since I already take way too many. I have experienced tremendous relief from symptoms each time I use Zicam and find the cold to be completely gone within 2-3 days. The earlier I begin Zicam treatment, the quicker my cold runs away. So, for colds, I absolutely highly recommend Zicam. Check out this webpage for more Zicam info... http://www.zicam.com/Category.aspx?eid=1."

BEWARE OF ZICAM! YOU CAN LOSE YOUR SENSE OF SMELL. See http://www.zicam-cold-eeze-lawyers.com."

13. METHADONE

[revisited from previous newsletters - use my site search at www.fms-help.com to find other references]

From a reader--

"I also take methodone which has made life more liveable for me. As it does seem to produce sleepiness, the 4th pill I sometimes break in half and use during the day for those breakthru times. And, I suggest the addition of Provigil which is the same as a child's Ritalin except that for adults it works the opposite way. I only need 50 mg morn dose and 50 mg mid dose and it helps cut down the sleep time greatly! But, start slowly as it also increases the feeling of needing to be active (which you may do before you know you're doing it), and, therefore, overdo on that day! And, you don't want to begin being called "Motor Mouth" either (non-stop prattling)!"

[Be careful with this! Anna Nicole's death, as well as her son's, was attributed to taking Methadone and anti-depressants, a combo used by some fibro patients.]

14. NATIONAL PUBLIC RADIO AIRS PROGRAM ON CFS

From a reader--

Hour-long radio program on CFS - On February 1, WFAE-FM (90.7) dedicated its hour-long "Charlotte Talks" program to CFS. Guests Dr. Charles Lapp, Dr. Laura Black and Kim McCleary talked with host Mike Collins about the push for recognition of CFS and its diagnosis, treatment and impact. The program is now available on the station's web site at http://www.wfae.org/wfae/nav1024.cfm?cat=18&subcat=93.

15. GOOD DOCTOR LIST

Got this letter from Whitney infinite242@gmail.com--

Dear fellow Fibromyalgia and chronic pain illness sufferers,

I run a local support group for chronic illnesses in the Bay Area, California. I'm just 29 years old and I was diagnosed with Fibromyalgia and Myofascial Pain Syndrome when I was 24. Just recently I was also diagnosed with CFS. Fortunately I have a wonderful doctor who is willing to do anything for me. But it was a long road to find this doctor. Before him, I saw a series of over 25 different types of doctors, seeking a diagnosis and support, only to be rejected and told that either Fibromyalgia did not exist or I couldn't possibly have the amount of pain I said I had and I had to work hard and fight for myself to get the pain meds and care that I have access to now. All of the fighting and stress made me severely worse. The number one reason why I had to go through what I did to get to where I am now is because in 2002 when I was injured and diagnosed, the 'good doctor list' that I found on the internet was so out of date. Either the doctor's info was incorrect – I got many of the 'this number has been disconnected' messages or I was told that he or she was no longer seeing new patients. I also got the excuse that this doctor is no longer treating people with Fibromyalgia. The same list is still up today and it makes me really upset that no one has access to a great up-to-date list, especially since this is something people need access to when they are first diagnosed. Today even though I have a wonderful support system of family, friends and doctors, I'm still getting sicker. And I still need a list like this to find other types of doctors who can help me.

With the huge amount of free time and little energy that I do have, my goal now is to put together a new Good Doctor List for sufferers of illnesses like FMS, Myofascial Pain, Lupus, Chronic Fatigue and many more. I think this list should not only include physicians and internists, but also Pain Management experts, Pain Clinics, Massage Therapists, Myofascial Pain Therapists, Chiropractors, Holistic doctors and many more. There are so many wonderful experts out there but finding them on your own time proves very difficult, time consuming and stressful, something none of us need when we're trying to get better.

So, I'm asking all support group leaders across the USA and other parts of the world to ask their members to chip in and offer information on doctors and experts who they would recommend to a fellow sufferer from their area. Please compile the info and send it to me directly either as a group or individual emails. Also, if you, as a fellow sufferer, reads this info on a website or support group, please feel free to email me directly with your recommendations. Your doctors' information will be kept safe and private and the information on the list will not be released until it's ready to go up on the internet as a whole list. I plan to compile this information in Excel on my computer and then work with some of the bigger support groups like AFFTER, Fibromyalgia Network, and FM Aware, in getting this list posted on their websites. It would be awesome if we could make this happen before or by the end of 2007.

My information is included below so please feel free to email me anytime if you have a recommendation or any questions or ideas and also if you want to help! Please make sure your email's subject line says: Good Doctor Recommendation and the email contains the following: doctor's/expert's name, specialty/certification, complete address and phone number, email or website if they have one, a list of symptoms and illnesses they specialize in treating or what they are treating you for and any other important/useful information like if they take insurance or do time payments for patients, etc. Please include everyone you can think of who is helpful to you including: your physician, pain specialist, massage therapist, chiropractor, holistic medical professional, therapist to help with depression and life's difficulties when living with a chronic illness, a hospital or clinic that welcomes pain patients and anyone else you think should be included. You may alternatively send your information in a letter, card or postcard to the address below if you do not have access to email.

Thank you so much for taking the time to do this. Everyone who submits something will be helping someone else who is in pain and who needs access to the right kind of care that we all should have access to.

Sincerely,

Whitney K Walker

433 Cola Ballena, Alameda, CA 94501 USA

Email: infinite242@gmail.com

16. BAD DOCS

If you've had a disheartening experience with a doctor regarding FMS/CFIDS, see my good/bad doctors page at www.fms-help.com/doctors.htm. You are in good company, as most of us have been through this! I hope this page will be validating and renew your confidence.

17. WEIRD STUFF

Has anyone experienced what I can only describe as a brief "psychotic break"? This has happened to me 3 times in the past 25 years with FMS/CFIDS and it only lasted for a few hours each time. I don't know what causes it. Episode 1 happened on a Christmas Eve when my family was visiting. I started to lose contact with everyone. I could hear them talking but could not respond. I was lying on the couch and they called my doctor. He thought it was my hormones (had a hysterectomy at age 34) and he doubled my Premarin. I felt fine in a few hours. Episode 2 happened 10 years later. I had been busy all day and that evening I had gone out to rake the lawn. When I came inside, I felt "disconnected" from myself. It got so bad that I had to just go lie down on the bed - I felt totally "out of it." I called a friend who is a nurse and she came right over. After several hours of wondering what to do, I finally decided to go to the E.R. By the time I got to the hospital, waited to be checked in and saw a doctor, I was feeling okay again. They ran all kinds of bloodwork, but found nothing. Cost was almost $800. Yikes! Then about 3 days ago, I started to have this same scary feeling of disconnection. I fought it for a few days, and even alerted my husband to the possibility of something like this happening, so that he would be prepared. Then it occurred to me that these feelings could be some kind of an anxiety disorder (as I had suffered with agoraphobia for 10 years as a young adult). So I took .5 (that's 1/2 tablet) of lorazepam (generic ativan, an anti-anxiety medication that I use for sleep) and felt better within 30 minutes. I had recently switched from Premarin to Estradiol (HRT) and wondered if this weird feeling was related to that, but now I think it's a chemical problem causing feelings of disassociation and anxiety. I have two first cousins (males) who are disabled from schizophrenia and severe OCD. (I have a mild case of OCD.....our gene pool is not very healthy!) Today I found some information online about dissociative disorders and learned that what I experienced is called a depersonalization disorder: "Feelings of detachment or estrangement from one’s self are signs of depersonalization. Although these feelings are difficult to describe, individuals with this disorder will report feeling as if they are living in a dream or watching themselves on a movie screen. They feel separated from themselves or outside their own bodies. People with this disorder feel like they are 'going crazy' and they frequently become anxious and depressed." No kidding! If you have ever experienced anything like this, please write me at dombush@bellsouth.net. P.S. My first panic attack was at age 14. I am 55 now - have had no more panic attacks since age 35. Hysterectomy was at age 34. Thanks bunches for any thoughts or experiences you would like to share. I know that a lot of people with fibro also have panic attacks....there's probably a genetic link there that medical researchers will discover one day.

18. QUILT OF HOLES

From a reader - I got choked up! It is the story of my life and maybe yours too--

"As I faced my Maker at the last judgment, I knelt before the Lord along with all the other souls. Before each of us laid our lives like the squares of a quilt in many piles, an angel sat before each of us sewing our quilt squares together into a tapestry that is our life. But as my angel took each piece of cloth off the pile, I noticed how ragged and empty each of my squares was.
They were filled with giant holes. Each square was labeled with a part of my life that had been difficult, the challenges and temptations I was faced with in every day life. I saw hardships that I endured, which were the largest holes of all.
I glanced around me. Nobody else had such squares. Other than a tiny hole here and there, the other tapestries were filled with rich color and the bright hues of worldly fortune. I gazed upon my own life and was disheartened.
My angel was sewing the ragged pieces of cloth together, threadbare and empty, like binding air. Finally, the time came when each life was to be displayed, held up to the light, the scrutiny of truth. The others rose; each in turn,
holding up their tapestries. So filled their lives had been. My angel looked upon me, and nodded for me to rise. My gaze dropped to the ground in shame.
I hadn't had all the earthly fortunes. I had love in my life, and laughter.
But there had also been trials of illness, and wealth, and false accusations that took from me my world, as I knew it. I had to start over many times. I often struggled with the temptation to quit, only to somehow mustering the
strength to pick up and begin again. I spent many nights on my knees in prayer, asking for help and guidance in my life. I had often been held up to ridicule, which I endured painfully, each time offering it up to the Father in
hopes that I would not melt within my skin beneath the judgmental gaze of those who unfairly judged me.
And now, I had to face the truth. My life was what it was, and I had to accept it for what it was. I rose and slowly lifted the combined squares of my life to the light. An awe-filled gasp filled the air. I gazed around at the others
who stared at me with wide eyes. Then, I looked upon the tapestry before me.
Light flooded the many holes, creating an image, the face of Christ. Then our Lord stood before me, with warmth and love in His eyes. He said, "Every time you gave over your life to me, it became my life, my hardships, and my
struggles. Each point of light in your life is when you stepped aside and let me shine through, until there was more of me than there was of you."
May all our quilts be threadbare and worn, allowing Christ to shine through!"

Thanks to my fibro team for all your contributions to this newsletter! Together we learn!

Dominie Soo Bush

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