Dom's Newsletter

www.fms-help.com

Thanksgiving Day

November 26, 2010

A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.

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17 TOPICS below.  Don't miss the RED ones.  Readers comments in BLACK.  My comments in TEAL.

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1.  READERS WRITE

"Thank you for your endless compassion."

"I love your newsletter."

2.  LOW BODY TEMPERATURE

Reader 1--

"Just read your snippet about  being cold www.fms- help.com/111910.htm and the underlying reasons - I've had my thyroid checked up and down EVERY kind of test there is and it is - always within 'normal' limits so my docs won't give me anything for it - I was in the hospital last week for 4 days ... I have had crippling nausea for the past 8 weeks .. last 10lbs in 5 weeks and then had dirreaha after trying to force feed myself saltines or a banana (had NO appetite)  I beleive this  was brought on from over treatment (by accident, my fault) of one of my co-infections , Bartonella which is part of lyme. my adrenals have been severely FATIGUED for a very long time and they went from bad to worse with an adrenal stress test (saliva) that I did in April and again in October.  we have tried EVERY supplement under the sun ..nothing is helping as I beleive they are now going into failure (addisons) .. I am ALWAYS freezing .. and like you will feel warm , but my temp is low (I have always hung around the 96.4-97.4 mark) now since I got home from the hospital ... when I eat or drink .. I get a very cold sensation in my abdomen ..like all my organs are frozen ..its really weird ..it dissapates ..but takes a little time its been 78-79 in my condo but feels like its in the 60's for me .. I am all bundled up and just soo cold (but I have always been this way ) - my lyme doc is hesitant to give me steroids as it  will make the lyme even worse BUT if my adrenals are in crisis mode ..then I will have to address the adrenals first - I've been ill with lyme/cfs, me/ brain lesions /etc etc etc .. since June of 2009 .. had to sell my business and am waiting for my hearing for SSD .. (live alone - family is in another state) - I face financial ruin ..but my life has already been ruined by this horrible disease - anyways .. not sure if any of this will help u but just though I would share my 'cold' story too and also to thank you for sharing .. as most doctors don't recognize addisons disease."

Reader 2--

"I have been treated for low body temperature.  My doctor diagnosed me with Wilson’s temperature syndrome.  You can google Wilson’s temperature syndrome to see Doctor Wilson’s website.  My doctor treated me with Dr Wilson’s protocol.  I paid several hundred dollars for compounded T3 for several months and my body temperature did not improve.  It was then that I found out from a different doctor that did muscle testing on me that adrenal fatigue and poor hypothalamus functioning make your body temperature low.  He said I had both adrenal fatigue and poor hypothalamus functioning among other things.  I’m still being treated for the adrenal fatigue with supplements.  I found out as you did that many things cause low body temperature.  I’ve stopped taking my temperature for a while.  It was quite tedious taking my temperature three times a day when I was being treated with the T3.   I would imagine that it’s still low now."

Reader 3--

"In regard to the low body temp, as far as I know this is a common problem with PCFS.  Here is a link about that and thyroid problems, but I also have heard that it is related to mitochondrial dysfunction: http://www.wellsphere.com/fibromyalgia- article/treating-cfs-fms-with-naturopathic-medicine/1193195."

Reader 4--

"I was hospitalised 4 years ago for what was believed to be an episode of Cold Sepsis with a temperature below 34*Celsius during a hot summer night.  I was told that about 10% of patients with CFS/ME will demonstrate severe hypothermia (low body temperature). This is often accompanied by severe episodes of nocturnal sweating, tremors, palpitations, facial pallor and a sense of impending doom.  It would seem to indicate a circulatory complication or a Neuro-endocrine manifestation with a loss of thermostatic stability. Causes and mechanisms remain unexplained to date. Wilson's Syndrome is one of the potential cause of low body temperature. (Read "The Miracle of Feeling Well" by Dr Denis Wilson MD, published by Cornerstone, Orlando Florida, ISBN No 0-9629875-0-6)."

Reader 5--

3.  LOSSES EXPERIENCED WITH FMS/CFIDS

 

From a reader--

 

"I WAS MOVED BY THE LETTER FROM “MARY” NAMED “I HAVE BEEN ROBBED” www.fms-help.com/losses.htm.  I ACTUALLY HAD TO STOP AND COULD NOT READ IT ALL!   I HOPE THAT I DO NOT SOUND HARSH.  BUT REALLY EACH OF US COULD GO ON AND ON ABOUT WHAT WE CAN NO LONGER DO.  I WOULD LOVE TO SEE MARY FIND HERSELF IN A MORE THANKFUL STATE AND THANKING GOD FOR ALL HER BLESSINGS (SHE MENTIONED SHE HAD FAMILY THAT HELPS HER, THE FACT THE SHE NO LONGER HAS TO WORK….)  I THINK THAT STAYING POSITIVE AND IN A THANKFUL STATE THANKING GOD FOR OUR NEXT BREATH AND PRAISING THROUGH HER (OUR) CIRCUMSTANCES WOULD BE BETTER!"

 

 

 

4.  TRAVELING TIPS WITH FIBRO

 

From a reader--

 

"Traveling tips: cover eyes with sleep mask while going down road-- the stimulus makes your brain tired and then....stretch and breathe and rest and eat;  deep breathing exercise; don't fuss or fight...let it go; pack snacks in purse....drink lots of water and eat lots of salt--i do potato chips because you get vit c and potassium too; i'm better in morning--and not in evening-past 5, so schedule all during the day---it's OK to miss dinner with the gang if you got to spend the day with them."

 

 

 

5.  HUSBAND DOESN'T UNDERSTAND

 

From a reader--

 

"Re: www.fms-help.com/111910.htm, Topic 7 (Marriage & Fibro): If you have a bad husband you have to let it go until you get your strength back--and never lose faith, many of us do, at least to a certain point.  My husband is the same--not capable of understanding--he really can not understand--we are all made differently---pray for him. but don't dwell......don't argue, it will wear you out, deep breathe, go outside, even tho you think you would treat him diff if he were sick. you would get stressed too.......some people just don't have the compassion others do, and some people just can't get what they can't see......write letters to let him know how you feel....instead of talking to him.....i text my husband....sometimes he reads them and says ok.....and that satisfies me......until i have the strength to leave him of course....haha."

 

FROM DOM:  See my marriage advice for women at www.fms-help.com/marriage.htm.

 

 

6.  BROKEN BRAIN 

 

From a reader--

 

"I thought you and your readers would understand my mixed feelings after this conversation the other day. I used to be very athletic, and recently started doing baby-steps workouts once a week with a trainer who has trained a few fibromites. She has been very good about listening to me and not pushing me when I say, “I just don’t think it’s a good idea to do that today. I can’t tell you why but I know it’s not right for me now.”  I was flared up somewhat this past Wednesday, and together we were trying to pinpoint the possible causes, but there were just too many – and as we know, sometimes you can flare even when you think you’re doing everything right. I said to her, “It must be frustrating for you to work with me – I’m always saying, ‘I don’t know why, I don’t know.’”  She looked so surprised and said very sincerely, “Are you kidding?” When I said no, she said, “I LOVE this kind of work! It’s so interesting and different from everybody else who just wants to lose weight. I mean, besides you, I’ve got a client with cerebral palsy, one with MS in a wheelchair, and a woman who was shot in the head when she was robbed at gunpoint!”   I’m glad she enjoys trying to help me sort it out. And I’m also glad she grouped people with fibro with other serious disabilities. Similarities to CP I can see, MS too – but am I really in the same company as someone who’s been shot in the head!? Am I even worse off than I realize? And how can I complain, when so many people with fibro are bedbound and can’t even consider trying to workout!"

 

FROM DOM:  With FMS/CFIDS/ME, our brain is broken and our body doesn't respond normally.  It's like our "computer" (brain) is malfunctioning.  I'm glad this reader's trainer understands the severity of fibromyalgia, although sufferers have it in varying degrees and it also varies from day to day.  FMS/CFIDS doesn't show outwardly (like a broken leg) and there is no test for it, hence the misunderstanding and skepticism we often encounter.  I have many articles about this subject on my homepage at www.fms- help.com.

 

 

7.  THE DOWNSIDE OF D-RIBOSE

 

From a reader--

 

"Several months back you posted a D-ribose question from me and several people generously took the time to write back (thank you!). I sure wish I could find the e-mail sent to me by a doctor, who explained the downsides of D-ribose very clearly… I always struggle with low blood sugar, and the upshot is that D-ribose will lower your blood sugar, so I stopped taking it.   Here’s what two of the e-mails said:

 

“I have been taking D-ribose daily for several years. It has helped me tremendously.

It needs to be taken with COQ10 and L carnitine in order to notice an increase in energy.

My Dr. is Jim Roberts, he wrote the book Reverse Heart disease now. If you can get a copy at

the library he explains how the supplements work together.I feel so much better, good luck.”

 

“I bought some D-ribose thru mail-order because it WAS MENTIONED on this website and people wrote in and praised it very highly, and when I rec'd some, I read the warning label and it said: Do NOT take if you're Diabetic! Well, I am Diabetic, and I wasted my money!  Again!  I'm soo desperate to feel better, I fall for all the ‘snake oil’ads!” 

 

 

 

8.  DOXEPIN FOR SLEEP

 

From a reader--

 

"I also developed a sleep disorder in my 20's. What drastically helped me was low dose doxepin 10 mg. a tricyclic antidepressant. It helped me after the very first night.  All I needed was one night of quality sleep to feel wonderful.  Unfortunately, it also was constipating and I struggled already with constipation.  So it was a delicate balance, but it really helped.  I would highly recommend trying that, start very low and go higher if you need to. I would also add a good natural yogurt 1/2 cup per day as I would be yeast was involved, limit sugars, and add some ground flax seed or ground chia seed."

 

FROM DOM:  My sleep disorder began when I was 16.  See www.fms- help.com/insomnia.htm.  I get restorative sleep most nights now with meds - see www.fms-help.com/what.htm.  Haven't tried doxepin yet.

 

 

9.  FIBROMYALGIA IS NOT DEPRESSION

 

From a reader--

 

http://www.fmnetnews.com/basics-news- marchand910.php

 

 

10.  MUSIC CD'S FOR SLEEP

 

Reply to reader Lorraine lorraine_rockel@hotmail.com--

"Does anyone use music CDs specifically to induce sleep, and what some of the titles are of those CDs?  There are many websites out there offering sleep inducing CDs, but it's hard to pay money and then they don't work! You can pass along my email address." - Lorraine lorraine_rockel@hotmail.com 

FROM DOM:  For me, any kind of soothing music or scripture tape helps me go to sleep, I think by distracting my mind from the process of falling asleep, because I had "bed dread" from decades of "rotisserizing."  My husband recnetly bought me a Soundasleep Pillow for my birthday.  It is a regular pillow but has a speaker in it that you connect to your radio, TV, ipod, or CD player.  This way, you can listen without disturbing others, and it is very soothing to have your music near your ear but not have to wear earphones.   I have fallen asleep many times to my Christmas music CD www.fms-help.com/CD.htm.  I have other sleep tape suggestions at www.fms-help.com/what.htm.   Everyone is different as to what works for them.

 

11.  AGGRESSIVE DOGS

 

From a reader--

 

"Re: www.fms-help.com/110710.htm (Topic 13) - we also have had terrible problems with dogs off lead. The only way to deal with this is Halt or any safe dog red pepper spray. We draw our dogs in close to us, make them sit. If we see an owner we say sternly control your dog. If the owner ignores us and the dog keeps coming we spray the dog knowing we did the dog no harm. Maybe it will even behave next time?  We don't care what the owner thinks we just think of protecting our "family" members. Like i say all the time you can't deal with stupid, some people have no common sense when it comes to their pets. Don't let the dumb owners keep you from enjoying a walk with your dogs. Get one of those belts that you can hook a leash to that way you can have both hands free if necessary. I would not be without mine. Easier to pick up droppings also!"

 

FROM DOM:  I was thinking of getting a citronella- based dog repellant spray so that I can walk my two little dogs in our neighborhood; however, in researching online, this spray doesn't seem strong enough to deter very aggressive dogs, so I might have to resort to pepper spray.  I sure don't want to get into any confrontations with unleashed dogs.

 

12.  POSITIVE XMRV TEST RESULTS

From a reader--

"We got the results today of my daughter's XMRV test.  She is positive.  POSITIVE IN HER PLASMA, meaning it was very easy to find the retrovirus, she is a very clear cut case.  She is processing this.  Her reaction was one of relief and vindication, there is a valid scientific reason for all this drama.  I love Judy Mikovits.  I really love her."

 

FROM DOM:  Read more about the work of Dr. Judy Mikovits at the Whittemore Peterson Institute:  http://www.wpinstitute.org/about/about_execboard.html.  Also, search for "Mikovits" in my past newsletters using the Google box below.  Here is a youtube video about the Whittemore Peterson Institute:  http://www.youtube.com/watch? v=KcQ2aXIIcao.  Also see my XMRV page at www.fms- help.com/XMRV.htm.

 

 

 

13.  THE ECONOMICS & POLITICS OF XMRV

 

From a reader--

 

http://johnherd.wordpress.com/2010/11/23/the-economics-and-politics-of- xmrv/ - Snippet: "On the XMRV stage we have seen a lot of evidence of such competitive politics aimed at the Whittemore Peterson Institute, the people there and their work. And what we have seen is the tip of the iceberg; far more has transpired behind the scenes."

 

 

 

14.  CHRONIC INSOMNIA & DEPRESSION

 

From a reader--

 

"I've had chronic insomnia for at least twenty years and have been super depressed for at least ten years with many doctor bills to no avail.  Looking for hope for the future.  Most of the time it's hard to see light at the end of the tunnel. The doctors don't understand what is going on with me. It's real hard to continue without hope. I've been on almost every antidepressant they make, it seem like most of them work opposite for me."

 

FROM DOM:  I hear you loud and clear.  Read my insomnia story at www.fms-help.com/insomnia.htm.  There's a list of everything I've tried for sleep at www.fms- help.com/sleep.htm.  I also have a list of what I use presently in order to get restorative sleep most nights www.fms-help.com/what.htm. (I am not a morning person - I stay up late and get up late, but it coincides with my work schedule, thankfully!)  Patients with chronic, debilitating insomnia need a caring, knowledgeable doctor to help them find answers, because each person's biochemistry and brain function is unique.  I'm thankful for my doc (internal medicine) who helped me (patiently) to find meds that helped.

 

 

15.  FIBROMITE TRAVEL REPORT

 

From a reader--

 

"Been back from holidays now for 48 hrs. Am totally exhausted and in much pain. As much as i tried to pace myself i was basically 'forced' to keep up with the rest of them. When i voiced how ill i was feeling i was told in no uncertain terms "Oh you'll be okay" After that i didn't dare say a thing - except to hubby of course. Spent most evenings after dinner hiding in our room crying with sheer exhaustion, frustration and pain.

We did have a nice holiday in part, but it was just too much for me. Fortunately the part i thought would affect me most - the flight there and back affected me less than being dragged all round towns and villages for approx 9 hours every day!! Any wonder i am ready to drop!!"

 

FROM DOM:  Poor, dear fibromite!  I think most of us can relate to this.  I personally have had to give up all hopes of taking a vacation - ever since I worked in toxic mold 5 years ago www.fms-help.com/mold.htm, which made things worse for my brain.  I must save my energy and nervous system for only the basics: job, church and home responsibilities.  A list of things I'm using is at www.fms-help.com/what.htm.  I'm VERY thankful to be as functional as I am, but have no additional energy for a social life - boo hoo!

 

 16.  FULL BODY SCANS AT AIRPORTS

 

http://articles.mercola.com/sites/articles/archive/2010/11/26/movement-grows-for-halt-of-fullbody-airport- scanners.aspx - Snippet from Dr. Mercola: "There are about 350 full-body scanners being used in close to 70 U.S. airports, and that number is expected to increase to 1,000 scanners by the end of 2011.  Dubbed "naked" scanners because they give a graphic image of your body, including genitalia and other personal effects like sanitary napkins, the devices are raising privacy and health concerns among frequent travelers and pilots groups alike. The alternative is also causing outrage. Those who opt out of being scanned must now submit to a far more intrusive form of pat-down, and a large number of horror stories have already surfaced, where people of all ages have been humiliated, or worse, during these 'enhanced' pat- downs."

 

 

17.  10 HILARIOUS NEWSPAPER HEADLINES

 

From Woman's Day magazine--

 

http://www.womansday.com/Articles/Family-Lifestyle/10-Hilarious-Newspaper-Headlines.html - need a chuckle?

 

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Well, that's all for now!  Try not to get stressed out and overdo it during the holidays.  Take good care of yourself, and don't worry about other people's expectations that are more than you can handle.  Focus on the TRUE meaning of Christmas, which is not stressful, but peaceful and uplifting: "...God so LOVED the world, that He sent His only begotten Son, that whosoever believeth in Him, should not perish, but have everlasting life." (John 3:16)

'Til next time,

Dominie Soo Bush

P.S.  Got Christmas Blues?  See www.fms-help.com/Christmas.htm. 

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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.

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