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 1.  READERS WRITE

"Thank you so very much for your website www.fms-help.com.  I am a newbie there and am learning a lot."

"Love your newsletters."

"Thank you for the amazing information!  This newsletter www.fms-help.com/052210.htm was exceptionally great."

"I enjoy reading your newsletters immensely and hope you keep them coming for a long, long time."

 

2.  HD TV & FMS

From a reader--

"My husband & I got our first HD TV a couple of days ago.  I was SO excited about it, as I've had "TV envy" for many years and have been wanting one.  Well, after having it delivered and set up ... then having DISH come out and do their thing with it, etc. etc. ... my excitement quickly diminished when it came time to actually watch TV.  I've spent 2 days off and on trying everything possible with the settings, etc. and it makes me dizzy and very nauseous.  On top of that, I'm constantly straining my eyes -- which gives me a headache (even when my husband says the picture is perfectly clear).  I don't know if it's the depth perception ....  the camera angles, or what ....  but the TV is making me sick and now we have to return it.  I so wanted this to work and am very disappointed and once AGAIN, feeling like a FREAK because I'm overly sensitive to something!  Could you please ask your readers if anyone has experienced this with HD TV's?  I guess I should have known better ....  3 times out of 5, when I go to the movies, I end up with a migraine.  UGH!  I just went online and googled the question.  Seems some people do have motion sickness problems with HD tv's. "

FROM DOM:  Write dombush@bellsouth.net if you have had any problems viewing HD TV.  We have sensitivities that "normal" people don't have.  Google the books "Highly Sensitive People" and "Too Loud, Too Bright, Too Fast, Too Tight" - both reported on in previous newsletters www.fms-help.com/newsletters.htm.

 

3.  DO LYME TREATMENTS HELP?

Question from a reader--

"I have a positive lyme test according to a lab called Igenex - positive western blot test standards, and I am waiting for results of a Dot Blot test. I am, however very curious to know what patients, the public, people with different experiences etc,  have with Igenex -  specifically, if they are tested positive (NOT according to CDC standards, but only Igenex standards), I wonder how many people then proceed to go through (grueling) treatment and actually feel better. I've already tried one long round of antibiotics this past winter (not feeling better)-- and these make one feel worse and can do more harm than good.... I would like to get a sense of how often they do good with potential/ "iffy" late-lyme/chronic lyme diagnoses. I also have Babesia (perhaps)...I am curious who is trying what for this presently."

FROM DOM:  Write dombush@bellsouth.net if you went through lyme treatment and if you feel better, same or worse now.  For those interested in Lyme, search my archives at www.fms-help.com/newsletters.htm.

 

4.  OVERACTIVE BLADDER

From a reader--

"In one of your newsletters, you talked about natural things that help overactive bladder, but I cannot for the life of me remember what it was.  I am thinking it was alkaline drops you put in water, but not sure.  Please address this in your newsletter if you can or put a link to the part of your site that addresses this.  All of the drugs for overactive bladder leave me with dry mouth, constipation, and brain fog so I just do not want to try any of them."

FROM DOM:  See my page with lots of ideas sent in by readers for bladder problems www.fms-help.com/bladder.htm.  Just FYI, to search my site and newsletters, use the Google box at the end of this page.  I also try to include a search box on all the pages of my site www.fms-help.com, which has grown tremendously since I began compiling fibro info in 1996! 

 

5.  ROOT CANALS & FIBRO

From a reader--

"I just came across this and it was very enlightening and eye opening.  I can imagine that there might be great implications for fibro here--

http://www.healingteethnaturally.com/summary-weston-price-root-canal-research.html

http://www.healingteethnaturally.com/root-canals-health-threat-interview-george-meinig-dds.html."

 

5.  HOTZE WELLNESS CENTER

From a reader re: www.fms-help.com/052210.htm--

"I have a friend in Houston who has done this.  They are very big on bio-identical hormones, antifungals, and a very, very strict diet of virtually no grains and no dairy.  It's expensive but I think her insurance paid some of it."

 

6.  SENSITIVE TO NOISE

From a reader--

"The books ["Highly Sensitive People" and "Too Loud, Too Bright, Too Fast, Too Tight"] are me to a "T".... and it's SO embarrassing.  I can never have any background noise because it goes through my body like a lightning bolt.  Or if too many people are talking at once, I get so exhausted and on edge.  When I try to explain it to 'normals,' they look at me like I'm an alien."

FROM DOM:  I have this problem riding in cars.  The noise, jostling, etc. exhausts me to the point of collapse after about 30 minutes.  Too much sensory input.  It's not as bad when I drive, but when I am a passenger.  Usually when we run errands, my husband drives and I put the seat back and wear dark wrap around glasses.  I am actually considering trying my black eye mask I wear at night and ear plugs, so that I don't get so exhausted.  I've always gotten motion sick, even as a child - in cars, merry go rounds, etc.  My friends used to ride roller coasters, ferris wheels, tilt-a-whirls, etc.  I tried just a couple of times and got desperately ill.

 

7.  CANADIAN PHARMACIES

Reader 1--

"A recent post made me cry for I remember so well the abuses I suffered in the workplace both physically and emotionally because of the effects of CFS/FMS/MCS/EI and nobody would listen when the medical profession said there was nothing wrong with me except my attitude and neediness.  BUT GOD - led me to obtain man's diagnoses, treatments and protocols which have helped immensely through the last ten years.  And recently silver water (homemade nano-colloidal silver) taken in small doses many times a day seems to really having a positive effect, along with all the other health related measures.  I feel so blessed to have found nutritional supplements for many needs and am only on one daily prescription - thyroid replacement hormone.  May He lead each of us into that place of healing He has already secured for us.  As a former Armour thyroid purchaser, I needed to find a source outside the USA when Armour reformulated and later was in very short supply and then became almost impossible to obtain for a season.  BUT GOD wanted to bless while the enemy was trying to curse.  I searched and used Yahoo TX Thyroid Support Group info to narrow the field.  The Canadian Pharmacy http://www.thecanadianpharmacy.com/ was my choice and they have been absolutely great.  David is the owner (apparently smaller company) and I now call and ask for him directly.  My USA prescription was for Armour (natural) thyroid.  Only one form of natural thyroid is available in Canada.  It is made by ERFA and the drug name is (simply) "Thyroid".   I discussed the thyroid need with my doc and she wrote a prescription for the amount in the wholesale bottle (#500) with directions for daily dose and year of refills.  After deciding on the company, I simply faxed that prescription to The Canadian Pharmacy and they have a Canadian doc rewrite the exact scrip to fill it and  then ship it to me.  I chose the large bulk order bottle for lower price and to save on shipping.  When the general Canadian Pharmaceutical market almost doubled the price of Thyriod within months of the new volume of US prescriptions being written and sent to Canada, I called and spoke with owner David.  He said that since I was planning to re-order over time, he would give me the old price as well as offer a discount to anyone else who called and identified themselves as part of the Tx Thy Group. When have you ever heard of such generosity in the USA?  I receive factory sealed bottles and the medication actually seems purer than what is now available in the USA.  I am TOTALLY pleased with The Canadian Pharmacy, the medication itself and the price - which turns out to be consistently lower than my Medicare Part D copay.  So this has been a true win-win & blessed situation for us.  The one caution I would have would be to confirm verbally who you speak with, keep notes and call back if you do not receive the shipment within about 10 days.  Also, they had difficulty in reading the normal sized fax so I made it larger, darker and faxed the original and the larger copy to them and that was a great help.  On one refill there was a miscommunication and the order was not filled after I placed an reorder on line.  But a fast apology was forthcoming when I called and the order then came right through.  Now I call toll free for all refills.  It is just learning what works best.  They have all their available meds listed on their website.  David would be able to tell you if larger sizes might be available.  My doc is happy with the results she sees in me and so am I.  As a retired RN, I would recommend this pharmacy to anyone on a long term med program.  Just be sure to factor in the extra shipping cost as the package comes from Canada and goes through US customs so the shipping is about $15 plus the cost of the prescription."

  Reader 2--

"MY DAUGHTER WHO IS 42 YRS OLD HAS JUST TRIED THIS NEW  "DATE RAPE" SLEEP DRUG [XYREM] - SHE JUST GOT UP - DID NOT SLEEP AT ALL LAST NIGHT.  MAYBE A FEW HOURS."

Reader 3--

"My daughter is taking xyrem, and it has been somewhat effective for her. There are still some nights that she simply cannot sleep and nothing works.  Xyrem dosing has you take a dose at bedtime, once you are in the bed. You leave the second dose at bedside and they send you an alarm clock (!) to use to wake yourself up after 3 hours to take the second dose. Her doctor told her just to take the first dose, and if she woke up, take the second dose. The deal is that your body processes the med quickly, so in order to get a full 8-hour sleep, you will probably need to take the second dose. In her case, she had trouble getting up after taking the second dose because it might not wear off if she waited too late in the night to take it. So then she tried the directions of taking the second dose when she was supposed to, using the alarm. That worked better.  You have to work up to the proper dose and get the timing right, and it can take 3 months to do that. Her doctor said it can correct your sleep pattern after a while and you will not have to take it any more. In a way, that has happened but not the results you might think. It is still unpredictable and she doesn’t want to use the higher doses because she is afraid she will sleep too long—like more than 13 hours! She seems unable to get on a schedule that works predictably.  There is only one pharmacy in the U.S. that is allowed to sell xyrem. So they control all the dosing and shipping and refills, along with the doctor. That has worked out fine—they have a nurse that checks on you at first, they call when they think you need a refill, they send you a video of how to take the med etc. You have to vow that you are not giving to anyone else and that you understand how to use it, etc. It might be a problem if you have others in your house that might steal or ingest it.  The biggest problem is the cost. The dosage she gets each month costs $1,657.20. I have heard that some people’s copay is $300-400 per month. It is basically approved for use only with narcoplexy—to be sure that the patient sleeps at night and then will have less daytime sleepiness. (My daughter has the problem of not being able to stay awake for more than 4 hours, so we got the med prescribed on that basis.)  My daughter has a Medicare Part D insurer (one of the cheapest programs available) and they are covering it for one year with copays of $3.30 (and sometimes no copay when she reaches the total cost where no copay kicks in. When her doctor says she needs something and provides the paperwork, this insurer covers what she needs if it is not a prohibited drug for Medicare Part D (sleeping pills and Klonopin-type drugs are not covered). I almost hate to say that she gets this med covered because there are so many who could not possible afford a copay for this med, but it is an example of the injustice of our health care system. Medicare will not pay for her visits to this doctor, who is a specialist in CFS/FM and Lyme, but they will pay for this med."

FROM DOM:  This just shows (once again) that different things help different people.  My list of what helps me is at www.fms-help.com/what.htm.  I am thankful for the more or less regular sleep I now have (thanks to meds).  My insomnia began at age 16 - that was 42 years ago www.fms-help.com/insomnia.htm.  I also am thankful that I can control (and often eradicate) viral attacks and infections better now, that formerly made my life so miserable.

 9.  CFS SUFFERING

From a reader--

"My sister is in a really, really, severe relapse for the last 2 years and has been almost totally bed ridden because her energy is near zero.  She has been extremely sick for 18 years with several brief periods of remission.  She had the viral onset type CFS/ME and has an extremely severe case, being almost completely bedridden for years and years in the beginning also.  This is the most horrible disease I have ever seen.  I have had to watch two other beloved family members die from cancer (not related to CFS).  Her physical condition is no better than their condition in their latter days and weeks of suffering.  She is under a doctors care (that is very familiar with CFS) but nothing seems to work right now.  Thanks for all your support for these forgotten, mistreated, heroic people that suffer every single day for years on end."

FROM DOM:  My heart goes out to this lady's sister with CFS, having myself run the gamut with CFIDS since 1987 www.fms-help.com/fatigue.htm - I totally understand!  There are degrees of CFS suffering, but click on Misery Index at www.fms-help.com/misery.htm: "CFS has one of the highest morbidity rates (degrees of suffering) of any illness, rivaling the physical misery of advanced cardiac disease and cancer."

 

10.  MYOFASCIAL PAIN

From a reader--

"I can't concentrate long enough to read all of your story www.fms-help.com/fibro.htm.  You describe muscles and nerves feeling inflamed and muscle gelling.  My muscles over my back and whole thoracic area are in constant spasm.   I certainly have all the things you describe that you had  including being unable to reach into a cupboard without expering severe pain for weeks.  I have not been able to do this or pull drawers out to reach into them.  my clothes are lying across the top of drawers.  When i try to hang them up, my muscles are so tight my muscles feel like they are tearing - it causes severe pain and constant recurring rib dysfunction, where the rib joints get "stuck" and stab into me causing extreme pain and further musculoskeletal dysfunctions in my neck, thoracic and lumber spine.  I go to a musculoskeletal Dr who uses very gentle muscle relaxtion techniques to mobilise my  ribs  ...his treatments are very helpful , but until I can get my muscles and fascia to relax, it is recurring.  I am so stiff and sore and my nervous system is on "full throttle".  Just burning all over, and I startle and jump at the slightest noise."

FROM DOM:  I had the exact same symptoms as this reader for many years early in my fibro experience that began overnight in June 1982.  See Dr. Devin Starlanyl's book:  "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual" http://www.amazon.com/exec/obidos/ASIN/1572242388/thefibromyaandcmA/.  Our problem is definitely related to the brain and nervous system.  I have many helpful articles on my homepage at www.fms-help.com.  A list of things I use now is at www.fms-help.com/what.htm.  I am much improved.

 

11.  BRAIN INJURY AND RIDING IN A CAR

From a reader--

"More than an hour in a car I have to lie back with eye mask and ear plugs on and when I get to destination ....if I go an further than this i am totally exhausted and have to shut myself in a dark and quiet room for days to recover.  My mild traumatic brain injury caused this, the filtering system in my brain is broken and it cannot filter out the constant stimulus of roadnoise, visual movement of oncoming cars, even the white lines on the road and power poles seem to all come at me and my brain and nervous system is overwhelmed with information which is very distressing and fatiguing.   A normal  brain uses a lot of its energy filtering out background noise and visual moving stimulus so the brain is not overwhelmed with constant information.  It sound as though after you worked in a toxic moldy building www.fms-help.com/mold.htm, that the mold has had a neurotoxic effect on your brain, much like a traumatic brain injury does.  I suffered a mild traumatic brain injury after falling and hitting my head on rocks leaving me with persistant headaches, fatigue and post concussion syndrome with severe sensory impairments. 18 months later I was sent to an osteopath for treatment for my headaches and his violent manipulations to my spine triggered off all the terrible fibro pain I now suffer from as well.  A double whammy.  The symptoms of both seem to interact ...it is truly horrible and overwhelming.  It has taken my once high achiveing life away!  I am unable to do anything I used to enjoy.  Once the osteopath  triggered off all the constant fibro pain, my hypersensitivity to noise, bright lights and visual moving stimulus became much more amplified.....now music is just noise I can no longer tolerate and lenthy or intense conversations, especially multiple conversations overwhelm me and exhaust me causing me to withdraw and lie down in the quiet and dark.....all very isolating.  Stress makes the pain and everything so much worse!!  The high frequency firing of my nervous system winds up even more.  Unbearable!!  I was once a cool, calm and collected person, who took things in my stride and could be relied upon to cope with anything.  Now I am easily irritated, foggy brained,  jump at the slightest noise, and burst into tears over the smallest trouble and so easily mentally and physically exhausted."

FROM DOM:  This is exactly what I have experienced since 2005 - after a year of working in a hurricanee-damaged (mold-filled) building.  I still can't ride in a car more than 30 minutes, but other things have improved - such as, I am able to go shopping again at Wal-Mart or the mall without having immediate, crushing sensory overload.
 

 

 12.  READERS' PRAYER CORNER

From "T" - "Please pray that the Lord will reveal to researchers what is at the root of fibromyalgia, and also that they will be able to find a definitive marker to identify patients.  Also, please pray that researchers will be able to truly understand how painful, debilitating and unpredictable the condition is, and be able to find a cure, something which will not negatively impact our organs or have harmful side effects.  Additionally, please pray that the health care reform will not cause a trivialization of our disease but will treat patients with the proper care and respect they deserve."

Updates from Dom:  Thank you for praying for Paul.  He is back from China and had a positive experience with the heart treatments.  Thank you for praying for my piano student who was hit by a car last month.  He has made a full recovery - thank God!

 

13.  FIBROMYALGIA SPOKESPERSON

From a reader--

http://www.captainhastings.com/

http://www.sourcenaturals.com/articles/6597/

 

14.  BITTERNESS

Quoted from a conference: "If you live inside of any family for any length of the time, at some point that family will wound you and wound you deeply. But, and this is the point, how you handle that wound, with either bitterness or forgiveness, will color the rest of your life!"

 

15.  MORPHEA

From a reader--

"I have had fibro for about 20 yrs. now. I have a dear friend who was diagnosed about 4 yrs. ago. She recently was diagnosed with internal Morphea. It is considered to be an autoimmune condition and to my way of thinking probably has some connection with Fibro."

FROM DOM:  Morphea is localized scleroderma (hardening of the skin).  See http://www.healthscout.com/ency/68/37/main.html and http://www.healthcentral.com/encyclopedia/408/37.html  - morphea is an autoimmune condition.  The immune balancing powder that I took for 8-1/2 years modulates autoimmune responses, so might be worth looking into for those with immune and/or autoimmune conditions.

 

16.  ALL ABOUT FIBRO

Very good page about fibromyalgia on the scleroderma website: 

http://sclero.org/medical/symptoms/associated/fibromyalgia/a-to-z

 

17.  HIPPOCAMPUS

http://www.jrheum.com/abstracts/abstracts08/13/0527.html - "Conclusion: The hippocampus was dysfunctional in patients with FM, as shown by lower NAA levels compared to controls, representing neuronal or axonal metabolic dysfunction. As the hippocampus plays crucial roles in maintenance of cognitive functions, sleep regulation, and pain perception, we suggest that metabolic dysfunction of hippocampus may be implicated in the appearance of these symptoms associated with this puzzling syndrome."

FROM DOM:  The hippocampus is an area of the brain next to the amygdala - http://biology.about.com/library/organs/brain/blhippocam.htm.

 

18.  LERNER ANTI-VIRAL TREATMENT FOR CFS

From a reader--

http://aboutmecfs.org/Int/Lerner.aspx - article mentions HHV6, HERPES, ORTHOSTATIC INTOLERANCE, LOW BLOOD VOLUME, ANTI-VIRALS, EBV, etc. in relation to CFS.  Dr. Lerner uses anti-viral therapy for CFS patients.  Some have had a complete recovery.

FROM DOM:  IF YOU HAVE CFS, BE SURE TO READ THIS ARTICLE!   I have reported on all of the topics mentioned in Dr. Lerner's article in my past newsletters - search at www.fms-help.com/newsletters.htm.  Personally, I have been feeling better since August 2009 when I began using oxygen drops in my drinking water - this keeps the body's pH more alkaline, where viruses can't activate as easily.  Also whenever I feel a cold sore starting, I immediately begin acyclovir (400 mg 4 times a day) and it seems to stop it right away.  I have also found DMSO cream most helpful in aborting cold sores in the prodrome stage.  You might want to check out Dr. Dantini at http://www.4fibromyalgia.com/case.html - he cured himself of FMS and food allergies, and he uses anti-virals with his patients.  He is located in Ormond Beach, FL.

 

19.  "I'M 63 AND TIRED"

From a reader--

http://www.snopes.com/politics/soapbox/imtired.asp

FROM DOM:  Me too!

 

20.  WHERE TO BUY B-12 INJECTIONS?

Please reply to Gail craftofgrace@yahoo.co.uk--

"Can you please tell me if theres a USA website where I can buy B-12 injections?  I've been searching online just found one in Canada which don't ship to the UK!  My GP is refusing to prescribe these and Im trying to find them myself!  Write to Gail craftofgrace@yahoo.co.uk."

 

21.  LYING IN BED UPON AWAKENING

From a reader--

"When my daughter went to the Fibro and Fatigue Center, they gave her a book of “tips” and one of the tips was always lie in bed after awakening and stay there as long as you can before getting up, using heating pad or whatever helps you relax muscles, etc. My sister has FM and she lies in bed, then gets up for her only cup of coffee and lies on a heating pad in her recliner while she has her coffee and meditation time. This is a key tip for getting through life with FM, I believe."

FROM DOM:  Awesome advice!!  I have found this to be most helpful in my case as well!  No more "jumping out of bed" at the crack of dawn for me.  I go to bed late and get up late.  My biorhythms prefer this.   I take my sleep meds, sleep 2-3 hours, get up, take the rest of my sleep meds www.fms-help.com/what.htm, sleep maybe 4 hours, then just sort of lie there and doze, think, pray, and relax for 1-2 hours.  This helps my brain lose its fogginess from sleep meds.  If I jump up too quickly, I am guaranteed a BAD DAY in my brain - feeling fogged and unwell.  I really appreciate this reader writing in on this topic!  For those of us who have been Type A "go-getters" all of our life, it seems so strange (lazy even!) to conduct ourselves in this manner, but it is the only way to survive this brain problem we have and to be even minimally productive during the day.  I am thankful that I have an empty nest now - don't have to get up early for children's needs.  I work afternoons and nights as a piano/guitar teacher www.fms-help.com/students.htm.  This ability to schedule my work hours is the only way I could continue working.  I do very little in the morning, except maybe write this newsletter to you all.  I think our heart, as well as our brain, is involved in this illness, and stressing the heart too early in the morning is not good for us - such as an early morning jog!  I have never felt much benefit from running, jogging or power walking - not even in my healthier days.  Exercise and me doesn't agree.  My favorite exercise is walking and light (3 lb.) weights.  In my early fibro experience (1982), I hurt so badly that I couldn't move my muscles half an inch without severe pain that lasted for days, weeks and sometimes months.  My life felt like it was over - see www.fms-help.com/fibro.htm.  My husband (ex) thought I was a nut case / hypochondriac.  Nothing was known about FMS back then.  He mocked and belitteld me continously.  Those were awful years in my life www.fms-help.com/interview.htm.  

 

22.  DOM'S UPDATE

On a light note, I was pleased that a reader liked my dress in the last newsletter www.fms-help.com/052210.htm!  I found it at a yard sale for just $1.  What a blessing!  Interestingly, I bought it from a music teacher.  It will be perfect for a future recital.  I don't know about you, but I am so tired today's styles - unflattering spandex, bulges, plunging necklines, etc.  I just want to look modestly nice, but don't have a Twiggy figure anymore...ha.

I continue to feel pretty good most days, thanks to things I use at www.fms-help.com/what.htm.  I am busy teaching music (piano, guitar, voice) www.fms-help.com/students.htm and playing the organ/piano at church. 

I wish everyone a safe and happy Memorial Day weekend, as we remember the sacrifices of those who died for our freedom and the precious families who lost these brave heroes.

Dominie

www.fms-help.com

dombush@bellsouth.net