DOM'S NEWSLETTER
Anniversary flowers from hubby
August 23, 2010
A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.
1. READERS WRITE
"Your story www.fms-help.com/fibro.htm is incredibly similar to mine."
"Thank you again for a most useful newsletter www.fms-help.com/081910.htm."
"I found your site www.fms-help.com when I was researching the Camisecret camisole www.camisecret.com (to see if I could make my own) and decided to check out your site even further."
"It is wonderful how we keep ourselves looking good when we are crying on the inside."
"I was excited to read your story about fibromyalgia www.fms-help.com/fibro.htm! For years I have suffered with these symptoms only to be told it's 'all in your head.' It's been depressing and frustrating especially since I have young children and don't have the energy or mental clarity to be the mom I want to be for them. I'm in my 30's but my body feels so much older!"
2. BRA FOR FIBROMYALGIA
From a reader--
"I have not been able to find a bra that is comfortable and still provides support and shaping. Therefore, I end up going without a bra and living in T-shirts. I'm still not convinced there's a bra out there I can stand to keep on. They roll on me (under the breasts) and the wires that I need for shaping are always uncomfortable."
3. SAGGING AREAS
From a reader--
"Does anyone have any exercises their CFS/fibro can handle for the lower stomach? Mine is getting bigger (and hangier ... is that a word?) Does anyone have any exercises their CFS/fibro can handle for tightening the rear? I've lost all muscle tone there and it continues to keep going south."
4. SUGAR & WHEAT
From a reader--
"I have recently figured out a link with my symptoms and eating sugar and wheat. Some of my symptoms go away when I cut those two things from my diet."
5. OUR COURAGEOUS PETS
From a reader--
"These are a few words of praise for our selfless and endlessly loving four legged companions. My faithful friend and little cat gracefully fought a long battle with cancer. His presence was always a reminder for me to remain patient and kind whilst coping with the symptoms of CFS/FM. I will continue to try living by his brave example."
FROM DOM: Pet lovers can understand and appreciate this!
6. SOCIAL ISOLATION CAUSED BY FMS/CFIDS
Reader 1--
"I also was diagnosed with low vit-D...after 2 weeks I had a little more energy and a little less pain...then a crash!. I feel terrible..had a relapse. Three really bad weeks and just starting to feel a tiny bit better.
I keep losing more (so called friends) I now have zero friends..I can't keep up with anyone.
I thought that if I start a fibromyalgia support group that I will find understanding and kind people.
I cry so much..I will be 57 soon and I feel like I am dying and about to be 90!
So sorry..I just needed to let it out and a shoulder to cry on.
The best thing is that I have a super great supportive husband. This is why I live."
Reader 2--
"I've got to look through your newsletters to see if I can find something on dealing with isolation. In the past 14 yrs I've gone from being an outgoing woman to a woman that for the most part isolates. I used to have friends that called daily and I called them. I don't even care for the phone anymore except for my kids and family. It sounds as if you have dealt well with it, still attending church and being the pianist..I'm a smidge envious. I know it can't be easy for you, but I admire you that you're willing to do it anyway. Amazing."
FROM DOM: I sure can relate to these readers. I too feel a sense of isolation, with you guys, my readers, being the people I cn relate to the best. It's just so hard to explain FMS/CFIDS to those who don't have it. I am thankful for many things I've found over the years that help me. My current list of everything helpful is at www.fms-help.com/what.htm. I too felt like I was dying from CFIDS for many years - like my brain and body was deprived of oxygen. The crashes were horrible!!! See my story called "The Radio" at www.fms-help.com/coincidences.htm. I felt like 90 when I was 30 www.fms-help.com/fibro.htm. Talking on the phone just exhausted me mentally and physically. My brother commented one day: "You're older than mom!" Thankfully, I am doing amazingly better now!! The oxygen drops http://neveranoutbreak.com/oxygen.php?partner=FM5H1PDB have helped me a great deal.
7. VITAMIN D
Reader 1--
"I would like to know if you know about vitamin D? My doc has me on 50,000 units. I have 20 units to go. My question is, should i be feeling something? Like a difference? Or do we not feel when our vitamin D level is really low?"
Reader 2--
"I read what you wrote about the Immune System on your tips page www.fms-help.com/tips.htm, and I had also heard about the mycoplasma/biological warfare connection. I also read the section on getting plenty of sunlight, and wanted to point out that Vitamin D is very important to the function of the Immune System also. Vitamin D is as critical to your Immune System as the ignition key is to starting your car. There is an article that a friend of mine posted on Face Book that said "A new study published in the March, 2010 issue of the Journal of Clinical Endocrinology and Metabolism found that a jaw-dropping 59 percent of the population is vitamin D deficient. In addition, nearly 25 percent of the study subjects were found to have extremely low levels of vitamin D". Here's the link for the story: Epidemic of Vitamin D deficiency sweeping the world. I found out that I was SEVERELY deficient after trying several things (including tests and thyroid medicine) that didn't seem to help very much (I was tired all the time, sick all the time & had lost 50% of my hair within about 6 months). Someone had suggested having my Vitamin D level checked & it was 7.7 (normal is 32-100). My doctor put me on 50,000 units of Vitamin D per week for 4 weeks, and I now take 1,000 units of D-3 a day (2,000-4,000 if I'm not feeling well). It's made a HUGE difference in how I feel. I have more energy, I'm not sick all the time, and not only has my hair stopped falling out, but it's starting to grow back. I can't remember where I found it, but I remember seeing an article somewhere that said people with Fibromyalgia and two or three other disorders (Lupus & Cancer I think), or that are overweight should automatically be tested for Vitamin D deficiency."
Reader 3--
"I also wanted to comment about the reader who is taking 50,000 units of D3 twice a day www.fms-help.com/081910.htm. I am friendly w/ a doc that just sent an email about how 50,000 units is overkill and that most endos will prescribe this ..which he does not agree with. This is a pain doc who does alot of thinking 'outside' the box .. he suggests 4-5,000 units a day of D3. I just started taking a liquid form of it this week ...orange flavor so I can put in my water."
Reader 4--
"I, too, was tested in wintertime for vit. D at my medical Dr. office, I was quite low! She put me on prescription vit D gel tabs, forget how many units. It did raise my checked Vit D .level! This summer she has had me reduce it to about 1/2 amount and I can get it in gels at local Sam's cub.. She will monitor my levels periodically, I have read this is a big problem now a days and more drs. are checking. I did not notice any symptoms got better on it tho I've read it helps pains."
Reader 5--
"We use megadose Vitamin D rx at the medical center where I work, and even for very low Vitamin D, we only use 50,000 tabs once per WEEK given by our endocrinologist. That sounds like a HUGE dose www.fms-help.com/081910.htm. Is she seeing an endo? Sometimes primary care is just not very knowledgeable about nutrition."
8. CURETOGETHER.COM
"Imagine being able to talk to someone who shares the same 7 conditions you have.
What if they’re also your age? They could be going through the same thing every day that you are.
You start to wonder, is their experience the same as yours?
Do they have the same symptoms? What treatments are they trying? Do they also have the same side effects as you?
In a new feature released at CureTogether this week, now you can not only find people that are your closest health matches,
but you can send them a private message to ask them these questions. They can respond privately to you,
and you can both choose what information to share with each other.
To start talking, just log in to www.curetogether.com and click on the “Connect” link on the right menu of your home page.
You’ll see a list of people to connect with and a “Send a private message” button to click.
Please let us know how you like this new feature and how we can improve it.
We hope it helps. Happy connecting!!"
9. BABESIA / LYME / BARTONALLA
From a reader--
"I watched that show too www.fms-help.com/0819101.htm (last night, Wed 8/18/10) - "THE MONSTER INSIDE ME."
and the first story was about a man who contracted Babesia by walking barefoot to the mailbox
Babesia is a parasite and it is also one of Lyme's nasty co-infections
thankfully he was able to be cured as he only had the Babs and not the Lyme
I got Lyme and another co-infection Bartonalla from a dog tick ..
and have been soo ill since July of 2009 ..
sold my very successful mobile dog grooming business
and I REST alot as I am going thru the treatment for lyme ..
which makes you even more sick and causes me to be homebound most of the time
I sleep 12-13 hours a day ..and still have such profound fatigue
my entire nervous and endocrine system has been affected and an MRI showed
a couple of lesions .. which lyme can cause as well so I am not worried about MS
as most Ms patients are wrongly diagnosed given steroids which is a fertilizer for lyme .
I was on 3 doses last summer plus a flare up of EBV...that is how my symptoms of lyme were able to come out and play
...and has only gotten progressively worse."
10. NERVE PAIN - NEURONTIN - DURAGESIC PATCHES
From a reader--
"I was just reading the woman who is suffering so with nerve pain www.fms-help.com/081910.htm. I suggest she talk to her Dr. about Neurontin. After I crushed the nerves in my feet the doc put me on Neurontin ..2 of them 4 times a day. I'm quite sure she'd get relief. I'm on other med, Duregesic Patches, which are good along with the Neurontin because the medication is released 24/7..versus that by mouth meds have a higher a lower med release. It's helped tremendously, and perhaps might help your reader.
11. ABUSIVE MARRIAGES
Reader 1--
"My advice for both of these women www.fms-help.com/081910.htm is to contact their closest women’s services shelters and take their kids and leave. They probably won’t of course – I have a friend whose kids are old enough now to know that they don’t even want to come home to go to school and yet she still is coming up with excuses to stay with her abusive husband – but unless they get out the door and away from these men NOTHING is going to change. Thinking that they need to stay because the husband is the sole source of income or because ‘it’s good for the kids’ is just deluding themselves and until they get away and develop their own lives they’re just feeding into the male ego of wanting to control everybody and everything."
Reader 2--
"I stayed in an abusive marriage for over a decade. When I got free therapy for myself at the Y.W.C.A. Most's Y.W.C.A.'s have free counseling. I learned I can only change me. You cannot change another person. When I took steps to free myself from the abuse God made it possible as he doesn't want us to be abused by anyone. I am happy too as my children would of been hurt by witnessing all that abuse (abusive relationships between parents damage kids very severely). Believe you can be treated well and work towards that goal and it will happen."
Reader 3--
"Many husbands use abuse as a form of control. It sounds as if this is what he is doing. I would say to her, that God knows what you are going through and he can use this for his glory. He has done so in me. I would start focus on controlling what you can. If you cannot afford supplements, I would start by stopping all sugar, sodas etc, and drinking only filtered water and green tea. I would then try to add kefir (fermented sweetened/flavored like yougurt- soy, coconut or dairy. 1/2 cup per day - in small doses it is reasonably priced. about 4.50 for a quart(the only sugar I would recommend). If constipated, add 2 tbsp ground flax seed daily (refrigerate after opening). Just these simple things should help you feel better if you are eating a lot of sugar and/or sodas and/or "fake foods" Best to eat "real foods" I have had patients get better with just these changes."
FROM DOM: See my marriage page at www.fms-help.com/marriage.htm.
12. GASTRIC BYPASS SURGERY & PROTEIN SHAKES
From a reader--
"I'd just like to put in "my two cents" on protein drinks. I had gastric bypass surgery about 9 years ago. At that time my doctor told me never to drink my protein. After trying several different types of protein I settled on Body Fortress Whey Protein. A 2lb. container lasts me almost a month. There are many places to purchase it. Recently the price has gone up dramatically. Now I buy it online from Walmart. I can get 2 containers for $25.00 plus shipping & tax. I use a scoop of it almost every morning on a mixed fruit salad. At first it was hard to get used to. Now it's how I prefer my fruit. It is high in protein and low in sugars so my glucose levels don't spike.There are several flavors."
FROM DOM: Check out the Triple Protein Shake at www.lifeplus.com/dominie.
13. LOADED WITH YEAST AND PARASITES
From a reader--
"My daugher went to a Certified Iridologist about a month ago. They read your eyes and detect general health and disease in the body. Her liver, spleen and adrenals are all compromised. She is loaded with parasites and yeast. She is doing an ionic cleanse (footbath) weekly and you can literally see the parasites floating in the water (small wormlike creatures). It draws out uric acid, heavy metals, liver toxins, parasites and yeast (yellow scum on top of the water). I think we are on the right track. The water is black by the time the treatment is done. She will do an internal cleanse for parasites when she can handle it. I would recommend this to anyone with FMS. Your immune system is in your gut and if that is loaded with yeast and parasites, you need to treat this first."
FROM DOM: I took used an immune balancing powder called i26 at www.legacyforlife.com/dominie for over 8 years. It works in the gut where 80% of our immune system is surprisingly located! It's called the "gut brain!"
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14. ALL OVER HEAD & NECK PAIN
From a reader--
"What do you do for “all over” head/neck pain? Not sure if this could be sinus, as my son’s allergies and sinuses are bothering him, too, but whatever it is, it’s miserable! I’ve been taking OTC sinus tabs, and finally gave in yesterday and took a Neurontin. I feel maybe 20% better, but the pain is still there—pressure and dull throbbing pretty much all over my head/neck and behind my eyes, etc. Any suggestions much appreciated!"
FROM DOM: I was thinking that some essential oils might help, like Peace and Calming, Lavendar, etc. See www.youngliving.com. If you place an order, I would greatly appreciate your using 905788 (Dominie Bush) as your sponsor. For a list of my favorite oils and what they do for me, see www.fms-help.com/oilsstore.htm. Essential oils work in the limbic portion of the brain, where a lot of our symptoms are coming from."
15. ANIMALS CAN HARBOR MRSA
16. FIBRONOL
From a reader--
17. MEN WITH FIBROMYALGIA
From a reader--
"I am 30 years old and have suffered with fibromyalgia since I was 24. Some days I question why I am still trying to battle it and have not just gave up yet. It has truly stolen my life from me, yet something in me refuses to give up and just let it win. Of course I have sought out the help of AMA (regular) medical practitioners and have not been helped in any way."
FROM DOM: I hear from many men with fibro. In fact, I have a special page for them at www.fms-help.com/men.htm. It might also be some consolation to read the occupations of my readers with FMS/CFIDS www.fms-help.com/occupations.htm. A list of things I use currently to stay functional is at www.fms-help.com/what.htm. I've been battling FMS/CFIDS since 1982 (age 30) www.fms-help.com/fibro.htm and have learned a lot about it over the years. I am now 58 and managed very well (working and 95% pain free - still have some bouts with fibro fog and fatigue at times, particularly when the barometric pressure is changing, I have to travel by car more than 30 miles, or am under unusual stress). There is no one single magic pill that solves everything, but I think my list is very helpful. Wish I'd known all this stuff back in 1982.
18. CFIDS CRASHES
FROM DOM: I developed CFIDS in 1987 after taking 6 different antibiotics to deal with a lung infection. I think those antibiotics wiped out what was left of my immune system. For many years, i26 www.legacyforlife.com/dominie WAS my immune system!
Then about a year ago, a reader told me about Oxygen Force http://neveranoutbreak.com/oxygen.php?partner=FM5H1PDB. I've been using these drops in my drinking water since August 2009, and have not been sick or had a CFIDS crash since then. I have stamina for each day and no brain fog, unless extremely stressed. I actually had a nice Christmas last year - first time in many years - no sickness, crashing, etc. These drops oxygenate the body and alkalize pH.
You start with just 1-2 drops in 8 oz. of water 3 times a day. After a few days, add a drop more and see how you feel. Only use as much as makes you feel better. I am using 10 drops in drinking water 3 times a day. I generally use 12-16 oz. of water with each dose, but that's what works for me. I highly recommend getting the book. It's pricey, but explains everything in detail (excuse the typos).
My husband said for years that it was like I wasn't getting enough oxygen to my brain (these horrible CFIDS crashes, brain fog, etc.) , but my doc wouldn't prescribe oxygen for me because he said my blood oxygen level was okay. (But that doesn't measure the oxygen in my brain.)
The oxygen drops is one of the MOST IMPORTANT things I use to manage my condition. The drops don't work exactly the same for everyone, but I think we ALL could benefit from some alkalization. (Dr. Majid Ali has commented that one of the 3 "furies" of fibromyalgia is acidosis. Acid causes disease and pain.)
For anyone who suffers from cold sores or other herpes viruses, they also make a rose-scented DMSO cream (same site mentioned above) that is very helpful, in addition to drinking the alkalized water. And for those who drink coffee or tea, check out their Alkalife drops, which alkalize your beverage. You don't want your pH to become acidic, because this increases pain and promotes disease - even cancer.
19. WARNING: THIS YEAR'S FLU PLAN
http://articles.mercola.com/sites/articles/archive/2010/08/21/barbara-loe-fisher-on-flu-vaccine-changes.aspx - Snippet: "The World Health Organization (WHO) declared the swine flu pandemic officially over on August 9th. The swine flu, which we were warned would kill millions, if not tens of millions of people, turned out to be a complete "dud" as far as pandemics go, but health agencies and governments around the world still managed to create massive fear of this hybrid flu virus. And, of course, vaccine makers made millions off their novel H1N1 vaccines. For those in the southern hemisphere, like Australia, the flu season has already begun, and the health hazards of this year's seasonal trivalent vaccine have already become evident. For the rest of you, the flu season is nearing, and another round of advertisements for flu vaccines are about to hit the media. Summary of a Failed Pandemic...."
20. HELP FOR BRAIN FOG
From a reader--
"Brain fog cure???? - quote: Frankincense or sandalwood essential oils from the company called young living. These oils are high in sesquiterpenes which play a role in dissolving petrochemicals along the receptor cites near the pituitary, pineal, and hypothalamus. Helps to increase the normal receptivity along those sites and increase the amount of oxgen in those areas. Increased oxygen around the pineal, pituitary, and hypothalamus can lead to increased mental capacity, mental clarity, and reduced symptoms of what has become known as 'brain fog'."
FROM DOM: I personally don't care for frankincense, but the Young Living essential oil that rids me of brain fog is Peace and Calming www.youngliving.com (ID number #905788). See www.oil-testimonials.com/6861. Click SEARCH and type in your problem.
21. DOM'S CLOSING COMMENTS
I have much more to share from readers, but ran out of time and space in this issue. Have been really busy with my students at the LABC School of Music www.fms-help.com/students.htm and playing piano/organ for my church. We are performing "Homeland" next Sunday night, a wonderful patriotic musical celebrating liberty and freedom. I will be dressed as Anne Sullivan (Helen Keller's teacher) and will play the organ. Each person in the choir and orchestra will be dressed as a famous American (Betsy Ross, Booker T. Washington, Johnny Appleseed, etc.) It will be a beautiful, uplifting program!
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