DOM'S (ever-improving??) NEWSLETTER
www.fms-help.com
 
READERS: Do you prefer this LEFT-aligned newsletter or the usual CENTER-aligned format? (See www.fms-help.com/090909.htm for comparison.) Please write me dombush@bellsouth.net with your preference. Thanks for your help!
 
September 11, 2009
Today we remember the victims of terrorist violence 8 years ago. Remember to fly a U.S. flag today to show that we are united and that we remember them and their families in our hearts and prayers. Thank God that such an atrocity has not occurred in the U.S. since then - and we pray never again!
 
Dom's Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families. 
 
 14 SHORT TOPICS.   READERS' COMMENTS IN BLACK.  MY COMMENTS IN TEAL. 
 
Dom's Quick Links:   Fibro Story  CFIDS Story    Insomnia Story    Newsletter Archives   Med List   Homepage  Previous Newsletter

 
1.  READERS WRITE
 
"Thanks for everything you do for us fibro sufferers - it means a lot."
 
 "I truly respect your opinion."
 
"My husband and I are rejoicing over your testimony www.fms-help.com/salvation.htm."
 
"Thanks for your time and efforts to put this newsletter out." 
 
 
2.  BURNING MOUTH
 
Responses to Topic #2 at www.fms-help.com/090909.htm--
 
Reader 1--
 
"I am responding to your inquiry about burning mouth syndrome. I also had this twice and attributed it to menopause. If you refer to a website entitled www.minniepauz.com, it will list 35 possible symptoms associated with menopause and burning mouth is one of them.  See www.minniepauz.com/35symptoms.html."
 
Reader 2--
 
"I would guess she has a huge problem with yeast and/or plus not enough good bacteria.  Even normal regular doctors agree that steroids cause yeast infections. PLUS the antibiotics, she doesn't even have a chance.  I certainly would have her evaluate your supplements (because some have helped me) but I would start today to go to the grocery store and buy some KEFIR which is a beverage with beneficial bacteria and beneficial yeast both. The antibiotics she is taking won't kill the beneficial yeast. I have had great results with this with my patients.  I would also encourage because of her probably high level of yeast, to gradually implement any changes or supplements as she might get worse before better. And if she has constipation to add ground chia seed to the regimen. Constipation when you are trying to get rid of yeast, will only make you much worse. Been there and done that!  (Also she needs to limit sugar)."
 
Reader 3--
 
"I would suggest, in this order:
1) tom's of maine or homeopathic toothpastes (other toothpastes burned my mouth)
2) or if it is neuropathy (i had burning feet) and used alpha lipoic acid p.o. 100 2x/day ( or 50 if you use the R form which I did not. it is supposed to be better but it felt too strong for me). this product has research for neuropathy
3) chewable probiotics in case it is yeast/candida/thrush. you can try primadophilus for kids by Nature's Way."
 
Reader 4--
 
"As far as the mouth problem, my dentist recently told me that the acid in my mouth is wearing my gums awasy; she said if I was a 17 year-old girls, she would greatly suspect I was doing the Bulemia "thing" of chronic vomitting; my gums are going to need extensive work; since I have scleroderma along with about 10 or more other illnesses, I figured it to be at least the scleroderma; she said no...she believes it is the fibro."
 
Reader 5--
 
"I've read that many w/ FMS have numerous dental problems. FMS causes us to be more acidic and acidic saliva makes our mouths much more sensitive. When my last dentist put a metal instrument near my teeth I felt like I was getting electric shocks and asked him if I was just imagining it because I feared the dentist (he hadn't even touched it to my teeth yet). He then used a small machine to measure the acidity of my saliva. I was 4000X (yes four THOUSAND!) higher than "normal". He said he'd never seen it that bad and was pretty concerned. He gave me a special natural toothpaste to use, however I found the cheapest, best way to address my sensitive teeth is use good old fashioned baking soda w/ a bit of water. The best way to treat the symptom is chew gum w/ xylitol or get xylitol mints/lozenges to suck on (can get at healthfood stores or online). Xylitol coats the mouth w/ a cool film that protects from acid and sugar. You can also get xylitol mouth rinse now.  Besides causing our mouths to be sensitive the acidity makes our teeth rot/break much easier and causes gum loss/disease. The best way to address the acidity in the mouth is to alkalinize the entire body as you can't just fix the mouth! Using a product like Dominie uses, drinking alkalinizing teas, and eating a proper diet (look up online for "candida diet" if you don't know what foods to avoid) is about all you can do. If your mouth is acidic you likely have candida yeast and digestive problems that need to be addressed also. Also if you have "burning mouth"  there may be metal toxicity. If you have a metalic taste in your mouth I'd suggested getting tested for metal toxicity. Here is one of many good links about the health benefits of xylitol and what kinds of products will help your mouth:
http://www.zellies.com/catalog.asp?prodid=536150&showprevnext=1."
 
Reader 6--
 
"Products with xylitol help a great deal.  Lavoris has a rinse.  I had Peridex also, but could not taste anything after using it.  (Seriously)  This does go along with dry mouth and increased bacteria levels and gum disease."
 
Reader 7--
 
"Your reader's message (#2) in your newsletter sounds EXACTLY like me."
 
Reader 8--
 
"I have battled the "burning mouth syndrome" for many years and think it is most definitely linked to Fibromyalgia. I'm being treated for Sjogren's. I use a toothpaste and mouthwash made especially for those with extremely dry mouths and this helps somewhat. Drinking as much water as possible is helpful as well, but at times, this appears to feel drying for some reason...... I do admit to chewing gum if I am in a social setting that requires speaking because my mouth and throat burn terribly. Also, my mouth will be so dry, my teeth stick to the inside of my lips! Carrying some of the mouthwash in a travel-size container is handy.  Perhaps your reader(s) with this problem will not feel alone and will find some of these hints helpful."
 
 

 
3.  ALKALIZING & OXYGENATING
 
Reader 1--
 
"Your comments about using sodium chlorite to boost oxygen is right on the money. I have used it for many years and most certainly notice the difference when I happen to be out of it. In fact I am going to order some from the source that you indicated because it is less complicated than the system that i am presently using. Very cost effective also.  Although this is an excellent first aid type remedy so to speak I truly believe that getting to the root of the problem and attempting to restore it is a top priority option. The article about the use of magnesium to improve the oxygenation of the blood to be excellent. This is something that I have long believed in and find very effective. I use the both of them together personally with good results. The sodium chlorite primarily for its deep cleansing of the entire body. The added oxygen is a fine bonus.  I hope that this information will prove to be useful for someone.  One of my favourite sources for the finest quality magnesium on the market is www.globallight.com.  I think you will enjoy their site if you are not already familiar with it."

Reader 2--
 
"I was interested to see, in your most recent newsletter, your comment on Oxygen Force - Alkalizing Oxygen.  I, too, have been alkalizing my body, and increasing my oxygen levels, with awesome results. However, I have been able to do it for a much lower price than the $37 for 4 oz., that this company (Never an Outbreak) charges.  Approximately two weeks ago, I was doing some research, and was reminded of something that I have known for many years. That is, that we need to keep our body's pH at 7.0 (as tested by pH urine dip stick), and that we need to keep our bodies oxygenated, to keep disease (especially cancer and infections) away.  You will find a lot of information at the following link: http://www.earthclinic.com/Remedies/baking_soda2.html#RF  about how to alkalize with Aluminum Free Baking Soda - I get mine at our local health food store.  There is also information for how to use other inexpensive products to alkalize using low to no salt options, for anyone needing to alkalize without salt, due to health issues.  I get my Food Grade Hydrogen Peroxide (H2O2) at: http://www.dfwx.com/h2o2.htm.  You can get a whole quart of Food Grade H2O2, for approximately $29. This is much less, and will last much longer, than the 4 oz., that is in the bottle, from Never an Outbreak. There is also some good information on the use of Food Grade Hydrogen Peroxide, at www.dfwx.com or Guardian of Angel, and Earth Clinic at: http://www.ask.com/bar?q=Hydrogen+Peroxide+Remedies&page=1&qsrc=6&ab=0&u=http%3A%2F%2Fwww.earthclinic.com%2FRemedies%2Fhydrogen_peroxide.html  I hope this helps you and your readers to find optimal health at an affordable price."
 
FROM DOM:   I was recently introduced to the Never an Outbreak products by a reader who responded to my question about immuno-deficiency (recurrent shingles and cold sores) and she suggested that I take a look at these products.  Well, it's been 3 weeks since I've been using the oxygen drops in my water and I have felt NORMAL - no brain fog, no feeling of collapse, or like my heart is crushing, or like my brain is on fire - a daily experience for me, especially if under stress.  My husband always said I needed more OXYGEN, but my doc would not prescribe it for me, since my blood oxygen was normal. However, new CFIDS research shows that we have low blood volume and a small heart.  Also, our blood oxygen levels after exercise is lower than when we are at rest.  (This could be why some CFIDS patients have died after being forced to exercise!)  These oxygen drops also create a more alkaline pH, which I think is helping me also.  An acidic pH (from the foods we eat) causes disease and pain.  The drops are easy to use, and so far, I am immensely pleased.  It's EASY for me now to work and do what I have to every day when I feel NORMAL.  (It's almost like, "So what was the problem?!")  I continue to use supplementation and meds (listed at www.fms-help.com/what.htm) but these drops have made a significant difference for me.  I'll keep you posted.
 

 
4.  RESETTING INNER CLOCK
 
Response to Topic 5 at www.fms-help.com/090909.htm--
 
From a reader--
 
"Concerning re-setting the innner clock.  It does not work for me.  It is not that I have my days and nights turned around; when it comes to sleeping until I wake up, and when it comes to not being able to sleep for several days at a time, they come and go;  for days I will not sleep and only FINALLY fall asleep after being so exhausted that I literally FALL into bed.  I will sleep about 6 hours and wake up feeling better and then do that for a few days.  THEN I will either be UP again for several days OR I go into the "mode" where I sleep for several days. I am not kidding. I will awaken to use the bathroom and return to bed for 12 and 14 hours at a time, NOT waking up refreshed.  I also have narcolepsy;  I have EVEN fallen asleep standing up!  I woke up as I began to fall over.  the same occurs on the toilet (embarrassing to admit).  I have tried to 'straighten out' my inner clock, and it will not work for me.  I wonder if it would work for ANY of us. I have tried all the sleeping meds with awful side affects from sleep walking to re-painting the inside of the house to making phone calls to friends at 2 in the morning...NONE of it recalled the following morning!"
 
FROM DOM:  I strongly suspect it won't work for me either, based on decades of trying to manage this monster.  My sleep function is just totally erratic.  If I didn't control it with meds www.fms-help.com/what.htm, I wouldn't be able to work at my job or serve in music at my church.  I would be totally out of sync with the rest of the world.  I still am not a morning person, no matter how much I tinker with my sleep meds.
 

 
5.  BOTHERSOME TEETH PAIN
 
Respond directly to Beverly bjforney@comcast.net--
 
"I am 43 and have had fibro/CF for almost 13 years.  Lately (the last year) my teeth have gotten extremely sensitive and I find my teeth hurting on a daily basis.  I have also had some major dental problems such as Resorption—which is not necessarily caused by any sort of decay, etc.  I have also had one implant over 6 months ago.  Do any of your readers suffer from bothersome teeth pain and do they currently use any sort of medication/product, OTC or prescription, to help in dealing with this discomfort? Your readers can email me at bjforney@comcast.net. - Beverly"
 

 
6.  EAR CANAL SWELLING
 
Responses to Topic #4 at www.fms-help.com/090909.htm--
 
Reader 1--
 
"I am a pharmacist, and it sounds like she might actually have a slight fungal infection in her ear, which is also common when you get swimmers ear. Sometimes it does need to be treated with a mild RX ear drop that has an anti-inflammatory in it, plus an antifungal if that is trully what it is. The only way to know is for the dr to look inside and see if he sees dead white blood cells, then that would determine that it is bacterial, not fungal. Fungal can be treated otc with lamisil drops and anti-inflammatory eye drops,since eye drops can be used in your ear to reduce the swelling. It is probably from her sweating in her sleep, and it dripping into her ear in her sleep, very common believe it or not. Hope this helps. "
 
Reader 2--

"I just wanted to respond to your reader who mentioned ear canal swelling in your latest newsletter.  I have suffered with frequent swimmer’s ear ever since I was a child and on the swim team.  I used to get a horrible case every Summer like clockwork!  As I got older, I started getting it even when I was NOT swimming, any time my ear got wet, like from showering or sweating.  For years, I used the swimmer’s ear drops which are mostly alcohol.  They are pretty good at preventing swimmer’s ear, but after years of using them, my ear canal became dried out and irritated.  What I do now, is try to keep my ear canals as dry as possible by drying them out a bit with a Kleenex after any time I swim, take a shower, sweat, etc..  Then I use a hair dryer and gently dry my ear canals on a low setting.  (Not too hot!  It can burn them!)  If I feel an infection coming on, I use hydrogen peroxide drops.  This usually knocks it out.  I have had to use antibiotic drops from the ENT when I have had a bad infection, but haven’t had to do this in some time now.   One other thing, usually this condition will make your ears really itchy.  Try VERY hard not to stick your fingers in your ears to scratch them, as this can introduce bacteria into the ear and make things worse!  I know, I’ve done it many times!  If you absolutely must scratch because it is driving you crazy, cover your finger with a clean tissue before GENTLY scratching your ear.  Also, I have read some information that chronic outer ear infections are usually related to yeast overgrowth, so that should be addressed too.  I try to avoid too much sugar and am taking probiotics."

Reader 3 (please respond directly to Susan susanfig@yahoo.com)--
 
"I have had ear issues as well ..they have now diagnosed me w/ eustacian tube dysfunction ..and am going back on Monday to another ENT to find out what can be done (tubes in ears ?) .. I am a very active person ...I usually work out 4-5 times a week at the gym ..and have been barely to get through my work days let alone doing anything else for the past 3months  ..including going to the gym - blood test came back positive for epstein bar . I took the test on 8/14/09.  Can you better explain these results?
 
my Igm antibiody was 1.02 (H)
my IGG antibody was 5.00 (H)
 
Also is there a way I can get this readers email address? or if you could give her mine ..?  I would like to discuss with her some things since we seem to be going thru the exact same thing! my email is susanfig@yahoo.com. - Susan"
 
FROM DOM:  I hope the reader who had the original question will see this.
 

 
7. "FIBROMYALGIA DENTAL HANDBOOK"
(mentioned in previous newsletter www.fms-help.com/newsletters.htm)
 
From a reader--
 
"I have this book too. Just wanted to let you know that the author is as sweet as can be. I met her at the National Fibromyalgia Convention in 1995. She was soft spoken and very caring when it comes to the troubles people have with fibromyalgia."
 

 
8.  MGUS
 
From a reader--
 
"Recently, I was diagnosed with MGUS (Monoclonal Gammopathies of an Underdetermined Origin). I have a vague memory of seeing that somewhere on your site, either my memory is making things up or I just can't find it. This is the first time that I have been tested for it even though I have been complaining for many years. Please remind your readers to encourage your doctor to test for it (inexpensive blood test). It marks people as having a one in four or five chance for Multiple myelomas (an untreatable cancer) later in life. Now going to see a hematologist this week for further testing to see what type of MGUS I have. Did you have an article on MGUS or is it my imagination?"
 
FROM DOM:  This is the first time I have heard of MGUS.  If anyone has info, please write dombush@bellsouth.net and I will include it in the next newsletter.
 

 
9.  MERCURY FILLINGS REMOVED
 
From a reader--
 
"I wanted to update on having my teeth pulled. It has been 6 months now since I had all of my teeth pulled that had the metal fillings, and I see no change in my energy level nor do I feel better health wise.  To add, I also quit smoking (smoking contains metals that the body absorbs while inhaling and goes straight to the blood stream) and I have done a partial detox, nearly complete and I do not feel better health wise nor do I have more energy. I know we had discussed before about the metals having an effect on the body, but now I wonder if they ever leave the body, even after detox. Speaking of which, I am not sure any detox can remove the metals."
 

 
 
10.  A.D.D. MEDS FOR FIBRO
 
From a reader--
 
"My sister in law has two children who are autistic and she swears it is from the mercury in the vaccines. If this were the case, eventually the body would relieve itself of the toxins by way of the blood stream renewing itself or through bile or intestinal passing. That leaves one to question if the metals stay forever, or is autism really a genetic disease not a mishap of metal like parents keep wanting to claim. I know it seems unrelated, but really, it is related. There was an email a while back about a girl who had taken medication for ADD or ADHD and the medication for it had relieved her symptoms of CFIS and FIBRO Fog. Odd as it seemed, I tried an herb made specifically for ADD (well, because, I thought, Genius, I have ADD too, lets give it a whirl).Incedentally, ADD and ADHD is a very slight mild form of Autism that is an effect of the brain not concentrating that if Autism was proven as a disease that is brought on by environment then autism would be the worse stage of ADD or ADHD. Yes, they are two totally different diseases, but they only represent themselves as such because they are on opposite ends of the severity scale. Although, they have the same characteristics, and same effects on the human brain and concentration. Most of the time they are treated with the same medication. Anyway, I tried the ADD medication and I saw the effects this person was talking about. I felt great on the medication, and when I came off of the medication my pain and sufferring was 10 times worse than before I took it. I tried it off and on for several weeks out of the month and guess what, the less medication I took, the better I felt in the pain area. The withdrawal of the ADD medication was a form of mimic feeling of a serious Chronic fatigue and fibro flare. The intense pain that shuddered throughout my body made it impossible to function for the next few days after I stopped the medication. Now, it has been 2 weeks since I took the medication and I do not feel any worse or better, no cured feeling and no tortured feeling, compared to before I took it. In other words, the medication for ADD tricked me at first into thinking I had been cured of CFS and FIBRO yet, in the end, I still felt pain but had more false energy. Once I got off the medication the withdrawal from it created such intense pain and feelings of despair that I wished I had never started taking the medication. The energy compensation (which was very little) and the feeling of (Yeah! I feel great emotionally) emotional release was not worth the intensity of the pain that was increased ten fold by coming off the meds. Let me just say that, if you take an herb for it, then you risk that herb changing, and the calories involved in your meds. If you take a prescription you risk them not refilling or you getting addicted. Either way, you will come off this med for about a week here and there. You will have to feel the flare from the withdrawal, and the effects of relief are merely an illusion. Once you get the medication in you for awhile your body will get used to it, and will eventually demand a higher and higher dose of it for it to work properly. At that point, you will either start having withdrawals or you will be paying more, putting more in your body and getting less of a return for the problems you are facing with the true problems. It doesn't cure, it only makes you feel like you don't have it at the time. The physical effects you endure while you think you are normal have a lasting effect or trauma on the body if you come off of the meds. In other words, if you over exert yourself physically because you are on the medication you will feel it after you come off of the meds, and you will be paying for it as if you never were on the meds, and sometimes you will pay worse."
 
FROM DOM:  Try a search at www.fms-help.com/newsletters.htm for more reader's comments on using ADD meds for fibro.
 

 
11.  READER QUITS SMOKING
 
From a reader--
 
"For those who are not allergic to pineapple, I do recommend taking Turmeric and Bromelain formula mixture for inflammation and pain. Only as a temporary relief though to make it through a day that you really need the extra help.  I did a lot of research when I quit smoking and I went to the herb shop for help. Normally I do not take a lot of things and hardly take anything regular because I refuse to get my body used to anything and then have them take it off the market once I find out how great it works. Anyway, there is a huge amount of products on the shelf with an ingredient called "Dopa". I found this most helpful when quitting smoking. Quite literally, it helps restructure the dopamine levels in the brain. When you smoke for many years your brain is pumped loads and loads of dopamine levels from the cigarettes. Your brain is rewired in a sense into receiving a lot more dopamine levels than what a normal brain should. This gives you that feeling of "getting hi" when you smoke. It is the relaxing agent that most smokers swear by to get their anxiety down. Basically, when you stop smoking you have shut down 85% or so of the receptors that are waiting for dopamine to be shot into them. Without those shots of dopamine the brain goes into withdrawal mode and starts sending signals of fear and frustration throughout the body trying to force you to get another cigarette and feed the dopamine levels back to the state you had trained them to be at when you smoked. By the grace of God, I was blessed this time when I quit smoking and I was given the smarts to study this and was shown through spiritual eyes what to find to help me accomplish this goal. I was shown this dopa product and told by the Holy Spirit to get it. It worked beyond belief. It was literally a Godsend to me, and I believe it could help others as well. It is powerful and it helped wean my dopamine levels back to normal until now I only take it during my cramping season. It is the one agent that goes straight to the brain and sends the natural painkiller out to the body to do it's work. It's like going to the source. Instead of filling your body with painkillers, like the Turmeric and Bromelain like I suggested earlier, you can take the Dopa and let the brain do the work for you. There are several products on the market with Dopa in them but I am taking the Dopa Mucuna (made with Velvet Bean extract) and I love it. I have not taken any others so far so I am unsure of any comparisons.  As a side note... I have been taking Dong Quai as well for my hormonal imbalance and it seems to be working great. If anyone wants to take this please research it thouroughly before doing so because it has a serious effect on the blood. Please research before taking." 
 

 
12.  LOW DOSE ANTIBIOTIC FOR CFIDS
 
From a reader--
 
"I have been on a low dose antibiotic (against your best recomendation-I know) for about 6 months now. The doctor originally gave it to me for my acne and it helped my CFS tremendously. The low dose of the doxycycline that I take has helped  with swelling of the limbs brain fog, and energy levels. Lately though, as with anything, the body has gotten adjusted and wants more. Refusing to give more I am now dealing with swelling of the hands and feet and legs, and once again the nightmares have returned, and the aches and low energy, all of which were relieved by the antibiotics. I question if maybe a got a bad dose of pills from the Pharmacist (it can happen quite often) so we'll see. However, with anythng that I take, I always get to a point where I have to deny my body of the medication and let it starve itsself of it so it can appreciate it once again. This even happens with Tylenol so it is no big surprise. The real surprise was in fact that I got away with taking it for 6 long months before I had to stop."
 
FROM DOM:  Most fibromites experience "habituation" (for lack of a better word) with both meds and supplements.  Sometimes giving your body a rest from them can help your body respond to them again.  We are a complex group of people - no wonder we baffle doctors!
 

 
13.  CANNED OXYGEN?
 
FROM DOM:  I found canned oxygen at www.oxygeninacan.com.  Has anyone tried this for brain fog?  I'm loving the alkalizing and oxygenating drops, but a few years ago my husband suggested that I look for oxygen in a can, especially when I had to travel to homes to teach piano and was so worn down I could barely make it to my next destination.  That's when I found the essential oil blend that helped revive my brain.  (I would sniff it as I drove along to avoid collapsing!  I know "normal" people don't understand this at all, but you guys do....so I feel okay sharing this with you!)
 

 
14.  TEETH WHITENING
 
FROM DOM:  Has anyone tried a do-it-yourself teeth whitener that works?  Cannot afford the big bucks at the dentist and the dental assistant said it does somewhat damage the enamel on your teeth, and who needs that...got enough problems.  Please write dombush@bellsouth.net with any info!
 

 
Til next time,
 
Dominie
www.fms-help.com
dombush@bellsouth.net
 

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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.