DOM'S NEWSLETTER
www.fms-help.com
 
July 19, 2007
 
A compassionate, informative newsletter for people with FMS/CFIDS/M.E.
 
TOPICS ARE IN PURPLE.  MY COMMENTS ARE IN TEAL.
 
I tried to use only non-moving pictures this time, since the wiggly pictures (although cute and fun) bothered some readers who have cognitive and visual disturbances.  I understand!
 
DON'T MISS: 
#13, 14, 18 & 24 - Urgent questions from readers
#27 - Dom's Update ("I climbed Mount Everest!")
 

 
1.  READERS WRITE
 
"I've been a happy subscriber to your newsletter for some time now."
 
"Thanks for the time you've spent putting info on your website www.fms-help.com.  I am newly diagnosed with fibromyalgia after beating my head against the wall of medical bureaucracies for the past 5 years.  Nobody really listens!  And if you "look OK" they think you feel OK!  NOT."
 
"Yours is the only newsletter I bother with anymore."
 
"As always, I enjoy each newsletter and so appreciate the time and effort you take in keeping it going.  It has helped hundreds." 
 
"Many thanks for the newsletter - it's a great learning tool."
 
"I appreciate your website www.fms-help.com so very much."
 
"I love you for all your work and caring you give to our community, and I pray for God to bless you richly."
 
"Thanks for your wonderful ministry and all that you do."
 
"I am thrilled to read how well you are.  After years of many struggles, you sound so upbeat and full of energy.  Praise God!"
 
"Thanks for the time and effort you spend to help others; we need someone like you."
 
"Your site www.fms-help.com is so helpful. Thank you for sharing."
 
"Thanks for being here for us. You have given me so many tips and ideas www.fms-help.com/tips.htm for the betterment of my fibro and associated disorders."
 
"I read your newsletter regularly and want you to know how much I really do appreciate it."
 
 "I am putting your web site in my favorites."
 
 
2. EFFECT OF LIGHTING ON BRAIN
From a reader--
"Have you heard of people with CFS who are extremely bothered by artificial
lighting
-- like can't stand being in some malls for more than an hour at a
time or need to stay away from evening events or they'll go home floating
off center and can't sleep at night because off the waves and buzzing in
their head?? I wan't to be able to sing with a group in Carnegie Hall in
November but am relly concerned about the spotlights. Do you have any
suggestions??"
[Could be from chronic neurotoxic illness - see Dr. Ritchie Shoemaker's site at www.chronicneurotoxins.com.]
 
 
3. ALPHA LIPOIC ACID & SLEEP
From a reader--
"My husband and I have been taking Alpha Lipoic Acid supplements for the last 3 months and we have both seen good results from that.  He has been diabetic for 50 plus years and has been able to cut his insulin intake in half.  That in itself is dramatic.. but he has also gained feeling back in a large portion of his legs.  The feet are still not responsive but we are certainly hoping.  I have had Lupus, fibromyalgia for many years and have suffered almost constant pain along with the inability to sleep a whole night through.  Since I've been on the Alpha Lipoi Acid, I have been sleeping like a rock.  Now I dream almost every night... and know I've gotten a good sleep. I will say though, I've hoped for less pain.  I cannot say that, but I am hoping that there will be improvements in that area too."
[See my list of things I've tried for sleep at www.fms-help.com/sleep.htm.  Read my insomnia story at www.fms-help.com/insomnia.htm.]
 

 
4. BRAIN DAMAGE
From a reader--
"I concur about CFS/FM being a virus or something else in the brain. I was diagnosed with cerebral atrophy. I cannot walk without a cane and my pain and spasms are much worse than before."
[See www.fms-help.com/cerebral.htm.]
 
 
 
5. NO ONE UNDERSTANDS
From a reader--
"I read your story www.fms-help.com/fibro.htm and was very moved by it.  I battle with pain every day and a husband and co-workers who don't believe there is anything wrong with me and don't want to hear anything about it."
[Boy!  This gets my dander up!  I am blessed to have a supportive husband and a few friends who "get it," but there are many who don't have this luxury.  The best article I know of to get non-fibros to understand is at www.fms-help.com/mnif.htm.  Also, see my homepage at www.fms-help.com where I have a lot of helpful articles about relationships and fibro and how to get people educated on this illness.  Trouble is, we look fine!  They can't see how we actually feel.]
 
 
6. PRESCRIPTIONS NOT WORKING
From a reader--
"For the reader who said her prescriptions are not working [www.fms-help.com/070907.htm] please ensure that there is not an underlying medical condition that is also causing pain that is being masked by the fibro.  These conditions can include thyroid problems, MS, sleep disorders, arthitis, lupus, anemia, malnutrition, etc.  I though my fibro was getting worse, but in actuallity I was suffering from extreme vitamin B12 and D defiencies... this was causing pain!  Still have fibro, but now it's minor and not as extreme and allowed the prescription meds to start working again."
[Yes, our bodies certainly need certain things to function well.  I began using a powerful nutritional powder on June 5 that I call my "rocket fuel."  You can write me dombush@bellsouth.net for info.]
 
 
7. HAIR LOSS
From a reader--
"My hair has been falling out for a couple of months or so.  Not too severe, but lots more than the normal amount that falls out monthly.  What can I take to stop or slow down hair loss?  Thank God I have loads of hair, but I won't for long at this rate."
[Comments anyone? Write dombush@bellsouth.net.]
 
 
8. COMMON VARIABLE IMMUNE DEFICIENCY
From a reader--
"Regarding topic #20 in the current newsletter www.fms-help.com/070907.htm.  I read a story in our local paper about Common Variable Immune Deficiency and the infusion therapy.  I was curious about it, so I asked the president of The CFIDS/M.E. Foundation about it.  She seemed to think that what I was reading about is the same thing as Myalgic Encephalomyelitis, or CFIDS.  I regard The National CFIDS/ME Foundation's information with a greater regard than all the other  medical patient organizations.  Check out their website at http://www.ncf-net.org."
 
And this response from the original reader who wrote with CVID--
"Thanks your your response and the person who wrote in about this deficiency.  I do no make enough B cells to fight off infections and catch everything that comes along.  That's is why I have to have to infusions monthly.  That is gammagloblin blood products from individuals who donate their blood, although when it is all processed it is mixed with something else and it is clear, not red like blood.  It is flown in from California, I have been told and mixed only after I arrive at the hospital and have been admitted.  Usually takes about 5 hours or so to run, if they run it faster I have problems, severe back pain and like I have been hit with the flu.  After I get home I want to sleep for awhile, and do nothing. It is extremely expensive and I am thankful Medicare pays for it.  I wouldn't be able to pay. So let me know if you hear anything else about this, they do have a web site, many web sites, and I have read about it.  But wonder if fibro people tend to have this or not."
 
 
9. DOCTORS TIED TO DRUG MAKERS
From a reader--
"Re: IS YOUR DOCTOR TIED TO DRUG MAKERS? www.fms-help.com/070907.htm. YES...mine is!  Which is why he wants to switch me to Lyrica when the Neurontin is working fine!  He is connected with 3 pharmaceuticals that I am aware of...he goes on "trips" promoting them!  BUT, since I AM aware of this, I can keep his advice in a well informed manner...and he is the ONLY doc nearby who can prescribe the narcotics that I also need.  'Tween the rock and the hard place..."
 
 
 
10.  ELAVIL CAUSES WEIGHT GAIN
From a reader--
"Re: WHICH ANTIDEPRESSANTS CAUSE WEIGHT GAIN www.fms-help.com/070907.htm.  Without a doubt: Amytriptyline! [generic Elavil] I gained 60 lbs in 6 months and wasn't aware of it at the time!  When I realized it, I went to the doc, handed him the bottle and said, "No more...find me something else or I take nothing!"  Being a shrink, he responded with, "Some people prefer plumper women."  I couldn't believe it!  I did change meds and it took another 6 months to lose this weight."
[See my doctors page at www.fms-help.com/doctors.htm.]
 
 
11.  PREGNENOLONE CAUSED FACIAL HAIR GROWTH
From a reader--
"Re: BRAIN FOG, For those who can use it...DHEA Pregnenolone Complex, 25 mg. is GREAT!  However, there are some side effects and I was one of the rare ones and the peach fuzz on my face (my entire face) began growing profusely!  I realized it when it got to be about 1/4" long (around the house I don't usually wear my glasses, so I'd not noticed it until preparing for a trip to the salon).  My eyebrows and nasil hair also grew and had to be trimmed back!  So, IF you can take it, it truly does wonders for the "fog" associated with Fibro."
[eeeeeYEW!!!!!!!!]

 
12. WEATHER & FIBRO
From a reader--
"In reading topic #2 for your July 9th newsletter www.fms-help.com/070907.htm, I was surprised that hotter states donít offer much relief for muscle pain. Some of us tend to respond better to heat rather than cold, and Iím no different. My husband and I went on our honeymoon to Jamaica a few years ago and I was surprised that I had absolutely NO muscle pain whatsoever, although I was still a little tired. I only wish our honeymoon lasted longer than a week! There, it was consistently muggy and humid with the temperatures never dropping below the 90ís (in September). Or maybe it was just the fact that we stayed at an all-inclusive resort and we didnít have to worry about food, money, time, etc. which goes against the laws of a type A personality. Maybe we should ALL take a trip to Jamaica?!?!....for research purposes of course! HA."
[Yes!  I would like to participate in this research study......gladly!]

 

13. URGENT QUESTION FROM READER ABOUT MCS!
Please respond directly to Francine franwaz@ozemail.com.au--
"Just a quick line to ask if anyone can give some help to my daughter, in January she washed her hair in some so called natural shampoo and had a massive reaction, was in and out of hospital but never really recovered completely, she still had jerking of the body, burning and itching but managed to get back to work which she works part time but now she is having sensitivity to smells especially strong smelling dishes, which people are eating at work, her lips swell up face goes numb up one side and burning taste in mouth she then gets a headache and nausea of the stomach, has anybody had this happen and found anything to help." 
[Can someone please help?!  Write Francine directly at franwaz@ozemail.com.au.]
 
 
14. EFFEXOR PROBLEM
From a reader--
"I am slowly withdrawing from Effexor and have "clicks" in my brain.  Anyone else experience this?  How long before they disappear? On 37.5mg once a week now."
[Comments?  Write dombush@bellsouth.net.]
 
 
15. ALKALINE WATER
From a reader--
"Truthfully, I have not noticed a difference. And the water tastes funny with the drops added. I will give it more time before giving up.  I did do a search on barometric pressure and fm and found out that it is low barometric pressure that affects us and causes us pain."
http://www.nutrivea-usa.com/alkalive_ph_booster_for_structured_alkaline_water.htm
[Has anyone tried this product? Write dombush@bellsouth.net.]
 
 
16.  FMS AWARENESS COMMERCIAL!!
From a reader--
"I was watching TV last night, Home and Garden and saw my very first commercial for the awareness of FM. It was 8 different people describing their pain in a couple of sentences. At the end fibro hope was advertised. The commercial was made by NFA. It brought tears to my eyes."
[THANK GOD for a commercial on fibro awareness!!! This reader is referring to the "public service announcement" at http://fibrohope.org. I'm sure what touched this reader was the feeling that someone finally understands what we go through. Most of us have been without compassion for so long, that it really touches the heart when someone cares and shows compassion! However, when you go to the website (sponsored by the National Fibromyalgia Association) and click to "learn more," you will see that Pfizer is advertising their drug, Lyrica. You can read comments by our newsletter readers who have tried Lyrica by using the Google search box at the end of this page - type in Lyrica. Remember our Million Letter Campaign for Fibromyalgia Awareness in 2005? See www.fms-help.com/letter.htm. We sure tried!]
 
 
17. CHILD ALLERGIC TO MOLD   
Article from a reader--
"My child is allergic to mold. What are some tips for decreasing his exposure.

Clean your bathroom and kitchen frequently with products that are
designed to remove mold. White vinegar works well and is not as
irritating a other chemicals for children with asthma. Because humidity
promotes the growth of mold, it is a good idea to have an air
conditioner or dehumidifier in your childís room. Be sure to change the
filter frequently to prevent overgrowth of mold in the unit. Do not use
humidifiers or vaporizers in your childís room. Remove houseplants from
your childís room. Have your child avoid damp areas such as basements
with a ďmusty" smell.

Where can I find products such as mattress and pillow covers to help
control my childís allergies? 

Try the following--
Allergy Control Products
www.allergycontrol.com
Allergy Asthma Technology Ltd. www.allergyasthmatech.com
Achoo! Allergy & Air Products www.achooallergy.com"
[Mold is a terrible enemy!  See my mold experience at
www.fms-help.com/mold.htm.  I have just begun to get better after 2-1/2 years of illness from this, thanks to new supplements I am taking.]
 
 
18.  QUESTION FROM READER ABOUT KIDNEY & THYROID
Please respond directly to Elizabeth elizabethlculp@msn.com--
"I have had a horrendous July and have developed health issues that I am now dealing with. I was officially diagnosed with Fibro in April ,2004 although I have been seeking a diagnosis  since I was in my teens.  My question to you & your readers is:  1) Have any developed Kidney Stones that have no real reason to have developed? I mean I have just been diagnosed with a 1.5cm stone but all of my calcium levels and such are fine, and 2) I also have a large nodule on my thyroid that we have just biopsied, I am still waiting for the results. Again no family history or reason to have one.  Thank you for your strength and encouragement."



19.  SLEEP, BIPOLAR & FIBRO
From a reader--
"I wonder if FMS has a link to any other disease and could show a strong link.  Sleep is important and lack of it can send bipolar people into mania, too.  and FMS has the sleep problem.  Wonder if people with sleep problems get FMS and bipolar more than  the regular population. [See this article]  Mapping Complex Diseases - Technology Review, July 9, 2007 - Researchers at Columbia University have mapped the overlap between 161 different diseases by studying epidemiological data from 1.5 million patients.  Among their findings is a strong overlap between schizophrenia, bipolar disorder, and autism, suggesting that these three
diseases may be caused by a shared group of genes."  
 

20.  REVOLUTION HEALTH
www.revolutionhealth.com
This is a great site run by Brett Hodges.  You can sign up for really interesting newsletters on various health problems.  You can also rate your doctor, find a doctor, etc.  The site is easy to navigate.  I recommend it.
 
 
21.  HELP FOR SLEEP?
From a reader--
"I wanted to share with you my present solutions for a good night's sleep and the best part is waking up feeling no brain fog for the first time in years.  Believe me having had Fibro for 26 years this has been a God Send, at least in my case.  It is from Enzymatic Therapy called "Fatigued to Fantastic Revitalizing Sleep Formula".  I wake up feeling clear, rested and energized (in a normal way).  I just love it! ! ! !  I've tried so many different kinds through the years, both prescription and OTC." 
[Has anyone else tried this?  Please write dombush@bellsouth.net with your experiences, good or bad.  Sleep continues to be one thing I have to take meds for.  I developed a sleep disorder at age 16 and it is still with me today at age 55.  My insomnia story is at www.fms-help.com/insomnia.htm and a list of things I've tried for sleep is at www.fms-help.com/sleep.htm.]
 
 

 22. LYRICA FEEDBACK
From a reader--
"It worked for me sporadically, but the side effect of drowsiness/sleepiness/fatigue was too much to deal with, so I only took it at night. I still have some left, but it's not my first choice for pain or for sleep. It's like taking aspirin for a migraine. If there's something stronger, you'll take it, but if all you have is aspirin or you would prefer to try something less strong, you take aspirin. Do you know what I mean?  At the time it was prescribed for me, however, I didn't have my current doc and thus did not have anything available to me that was better at treating my pain, and it was better than nothing, better than Tramadol, better than Ibuprofen 800 for my pain. Again, though, the drowsiness/sleepiness was too much, so I took it only at night."
 
 
23. OIL PULLING
A reader sent this post she found online--never heard of this before - sounds weird but might be worth a look--
"I started oil pulling 3 months ago to see what it could do. Immediately I noticed much whiter teeth. Within the week, my tongue and gums were pinker and healthier looking. The pale white coating that had been on my tongue for years was decreasing the more I oil pulled. My joints lost their stiffness, to the degree that I no longer take MSM Glucosamine or need to use my foot massager to relieve their stiffness. I was starting to walk like an old lady, and this was great to be free of that!  My skin became softer and smoother all over. For decades I had a skin condition -- Keratosis Pilaris -- little bumps all over my upper ams and cheeks. This has decreased by 99% and I can wear sleeveless tops again without embarrassment. (Karatosis Pilaris has no known medical cure.) I could tell you more health improvements, but these are the biggies. Others on the oil pulling forum report many other different health improvements: no more bleeding gums, clearer thinking, more energy, sounder sleep. We have been collecting pollutants and chemicals in our bodies for years. Eventually, we pay for this inner pollution. Oil pulling has been practiced for hundreds of years, having its roots in Ayurvedic medicine in India. Even today, many in India do this as part of their daily regimen.  You say "there's supposedly some vein under your tongue". Why don't you just look under your tongue and check that vein for yourself? It is there and it is large. If acid can pass into our bodies under the tongue, don't you think that substances can pass out as well? My husband, a former chemist, says that oil pulling makes sense to him because some substances are water soluble and some are oil soluble. The toxins collected in our body, carried through our blood, will pass through that large vein, and those that are oil soluble will be absorbed by the oil. This takes time, so oil pulling is done on a daily basis, and gradually, more and more toxins are pulled out by the oil.  I'm not a chemist or a doctor, so I can't explain this any better to you. All I can do is invite you to do your own research to better understand what your mother is doing. Maybe you will ask her what health benefits she has experienced since she started. You can check out these web sites if you care to: http://www.oilpulling.com and http://curezone.com/forums/f.asp?f=738"
 
 
24. SSRI QUESTION FROM READER
Please respond directly to Kathy katrunn1@msn.com if you have comments--
"I read this subject with growing alarm, as I have been taking SSRI's for 10+ years and am currently taking Provigil and have for at least 1 year.  I am confused about a link near the very end of the subject:  Cheney strongly urges anyone taking antidepressants or stimulants to read Glenmullen's book. It lists safe alternatives to SSRIs.  http://www.healthy.net/scr/Column.asp?Id=672&xcntr=1 - the link takes you to an article about Dr. Teitelbaum's approach to treatment.  Was this link given to give us an example of 'safe alternatives to SSRI's?  if this is the case, then that answers my question.  I apologize if I am not making too much sense here, but the information that is given in the book by Dr.  Glenmullen has me quite shaken up.  The symptoms discussed that may occur after a decade or so of the SSRI treatment hit much too close to home for me. I have my quarterly dr's appt. this Wednesday, with my regular doc that prescribes all my meds.  He's not a fibro doc, just a doctor that I like who has been willing to try just about any of my suggestions for my treatment.  I guess I should print off any info about this new book that I can and take it to him.  As with all docs, he is way busy and may not want to research this deeply on a subject that is not really his field.  Any suggestions?"
 
 
25.  CANDIDA, FUNGUS & EVOO
From a reader--
"I've been sick for a long time and have done a lot of digging on the internet.  If I could remember all of it I'd be smart.  But of course I can't.  I have Candida now from taking the antibiotics for over a year for the Lyme Disease.  Last week I ran across an interesting web site for Candida (http://www.mall-net.com/mcs/afung.html)  The writer said to use extra virgin olive oil for skin problems from Candida.  I've been using it for the last four days and I've been really surprised.  It kills the itch, sometimes I have to apply twice,  keeps the skin from drying out and kills the top layer of the candida parasite.  The writer says it also keeps the candida from sending out the spores.  My arms are the worse and I've had the candida skin flake off where it didn't even itch."
[Write dombush@bellsouth.net for a few other ideas for dealing with fungal infections.]
 
 
26. CHRONIC FATIGUE NO LONGER SEEN AS YUPPIE FLU
New York Times article from a reader--
http://www.nytimes.com/2007/07/17/science/17fatigue.html?_r=2&ref=science&oref=slogin&oref=slogin
[See an Australian article on my site called "Drained by the Brain" at www.fms-help.com/yuppie.htm.]
 
 
27.  DOM'S UPDATE
 
"I climbed Mount Everest!!!!!!"
 
(Well, not the real Mount Everest but something that has been just as physically insurmountable for me!) 
 
Here's what happened...
 
Since I had been feeling better since June 5, Donnie and I decided to try to go visit my 85 year old mother who lives 51 miles away.  I had not been able to visit her home for 2 years due to my awful fatigue and fog.  I would just collapse from the effort and strain of trying to make the trip.  (It's sad when your 85-year-old mother has to brave the interstates to visit her 55 year old daughter who is a physical wreck.....but looks fine!) 
 
So on Saturday, we spent the afternoon with my mother, went to lunch, had a nice visit at her house, and drove home that evening (traveling another 51 miles).  I felt good!!  Got a little sleepy at moms after hours of conversation, but no travel fatigue or other miseries that I have been describing in detail for many years in my newsletters for my longsuffering readers!!  The products my husband suggested that I began taking on June 5 have given me my life back!
 
I use 3 things:  #1 gets oxygen to the brain, #2 is my "rocket fuel" for energy, and #3 helps my nervous system unwind after a stressful day.  If you want info, write me at dombush@bellsouth.net.  I have no more fatigue or fog, I enjoy plenty of energy and have no more miserable feelings, unless I reeeeally overdo it.  So my life is pretty much normal again.  Well, after the long (for me) journey to Mom's on Saturday, I had a busy day Sunday as a church pianist and also met with out-of-town relatives for lunch before returning back to church in the evening.  On Monday I drove 35 miles to a neighboring city to have lunch with a group of friends I had not seen in years.  I stayed in town all afternoon (taking care of business and medical things), so I could attend a viewing that evening of a friend who passed away at age 59.  I got back home to Green Cove Springs around 8 p.m. and was barely even tired!!  The next day, I taught my music students and still felt well.   Today I had a 3 hour business luncheon to attend for the school, followed by teaching and then prayer meeting at church.  I'm still feeling good.  (Does this sound like the same "Dominie" you have come to know and love???  I realize that my long-time readers are probably in shock!!)
 
I want to give credit where credit is due: I praise and thank God for the improvements I've experienced since June 5 and for bringing these products to my husband Donnie's attention.  I believe this was the answer to prayers at my church in May when the choir members and deacons laid hands on me and prayed for my healing.  I love my church family and appreciate their care and concern more than I can say!  I'm sorry that I can't mention these products on my site, since I'm not a doctor, but if you want info and a link to my online store, please write me at dombush@bellsouth.net
 
I just heard from a reader who is trying the things I'm using and she wrote, "These products are awesome.  There is a definite difference in my energy levels with these supplements!  Thank you very very much for the information.  I have tried several supplements from Fibromyalgia sites that haven't helped at all.  I really wasn't expecting much, but I was willing to try.  Wow!  I appreciate the time you gave me and all of your help." 
 
Well, life is incredibly better but not perfect.  My two remaining "complaints" are the sleep disorder www.fms-help.com/insomnia.htm which I've had for 40 years (and manage with sleep meds), and the occasional chest tightness which I've had for the past 2-1/2 years (ever since working in toxic mold and coming down with a severe virus).   Speaking of which....a strange thing happened last week!   The chest tightness had been gone for many days when I went to a new chiropractor (for a pinched nerve in my shoulder).  He used a powerful massager on my back.  Whatever was wrong in my chest flared up reeeeeally bad when he was doing that!   I felt like something was loose in my chest and was rattling!  I could barely breathe for the next 2 days!  The cough and chest tightness returned with a vengeance - it felt like an elephant was crushing mme!  Eventually the discomfort went away, but it came back again for a few hours late one night when I was tired.  It's gone again.  If you have any clue what this might be, I would sure appreciate your feedback!  Please write me at dombush@bellsouth.net.   My heart and lungs checked out fine recently--thanks to some expensive $$$$ medical tests which went on credit cards---UGH!!!  Illness is soooo expensive!!!   The pulmonologist thought it was costochondritis (inflammation of the sternum) but my symptoms don't fit that description too well, so I remain clueless!
 
Well, I'm grateful to have my energy and mental clarity back!  Maybe the other things will get better too....and if not, I guess I'll have to live with them!  Life has been so much easier since June 5 without debilitating fatigue and brain fog.  Now I hope to climb even higher mountains and see how far I can go with the "new improved" me!!!
 
Til next time,
 
Dominie Soo Bush
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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.