DOM'S NEWSLETTER
www.fms-help.com
 
May 6, 2008
 
A compassionate, informative newsletter for people with fibromyalgia (FMS), chronic fatigue & immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (M.E.)
 
30 topics below in PURPLE.  Readers comments in BLACK.  My comments in TEAL. 
 
DON'T MISS!  #20 & #24

IN THIS ISSUE:
1.  READERS WRITE
2.  ULTRAM / TYLENOL CLARIFICATION
3.  GREEN TEA HAS CAFFEINE
4.  ADRENALS
5.  FIBROMYALGIA IS A DISEASE - NOT A SYNDROME
6.  NITRIC OXIDE & FIBRO
7.  CORTISONE
8.  FORCED EXERCISE
9.  IODINE
10.  DOM'S SUPPORT GROUP
11.  THYROID, ADRENALS, DIGESTION
12.  MAY 12 - FIBROMYALGIA AWARENESS DAY
13.  BROMELAIN & GLUCOSAMINE
14. ANTIBIOTICS & FIBRO
15.  DISRUPTED CIRCADIAN RHYTHM
16.  WHY YOU HAVE TO GET UP FOR THE BATHROOM MORE WHEN YOU CAN'T SLEEP
17.  FIBROMYALGIA TALK RADIO
18.  ALTERNATIVE MEDICINE HELPING
19.  U.K. FMS/CFIDS SITE
20.  UPPER BRAIN STEM OVER-FIRING CAUSES INSOMNIA & FIBRO
21.  COLDS
22.  HOT FLASHES
23.  CURAMIN
24.  CHIROPRACTIC DANGER
25.  SLEEP SUPPOSITORIES
26.  IMMUNE POWDER HELPING
27.  DISABILITY TIPS
28.  CUBA
29.  POEM FROM A READER
30.  DOM'S UPDATE   

 
1.  READERS WRITE
 
"Love love love the newsletter and your website www.fms-help.com."
 
"Thank you for the opportunity for communication that you offer."
 
"I've been searching fibro sites for a couple of years to find any tidbit of help. I have gotten tired of reading the same old jazz over and over, was looking for the kind of realistic help you provide.  Some books help a little but none have been as comprehensive as your 100 points www.fms-help.com/tips.htm, especially your pithy explanations."
 
"Thank you for creating your web site www.fms-help.com.  Only when you read about others in the same boat as you, do you truly feel like 'wow--someone does understand and can relate'." 
 
"I can't tell you how happy I am I found out about you!! You are so full of knowledge and inspiration! God bless you! And please keep it coming."
 
"Your 100 tips www.fms-help.com/tips.htm are more useful information than I have gotten from anything else.  Thank you!"
 
"Another great newsletter.  I look forward to each and every one and archive them all for reference."
[Dom's Newsletter archives are at www.fms-help.com/newsletters.htm.]
 
 
2.  ULTRAM / TYLENOL CLARIFICATION
Reader 1--
"Was reading [ www.fms-help.com/042008.htm ] about what the person said about Ultram not having Tylenol in it. It does not but there is Ultracet which is Ultram/Tylonol, when they first started using Ultram.  It was to hard for some to take, so they made the Ultracet, so I think someone is right about it just has the name wrong."
 
Reader 2--
"In regard to Tramadol, Tramadol does not contain Tylenol.  It is marketed under the name of Ultram.  Ultracet, on the other hand, does contain Tylenol, as it is made up of Tramadol plus Tylenol.  Hope this helps!"
 
Reader 3--
"Regular Ultram/Tramadol does not contain Tylenol.   However, the formula known as  Ultracet does contain acetaminophen/Tylenol.   At a bit higher doses, Ultram can cause some people to experience insomnia and even sweating."
 
 
3.  GREEN TEA HAS CAFFEINE
From a reader--
"In your last news letter at #14 about Migraine a
reader says green tea does not contain caffeine, this
is false and is a very common false belief.

Here is something from Wikipedia,

'... Green teas contain two caffeine metabolites
(caffeine-like substances): theophylline, which is
stronger than caffeine, and theobromine, which is
slightly weaker than caffeine.'

A Google search will also provide many sites where the
myth of green tea not containing caffeine is debunked.

I do not know why so many people think green tea does
not contain caffeine, and I do not know how those
"rumors" get started but do they have a long life!

If the reader in question gets relief from his/her
headaches by drinking lots of green tea it is most
probably BECAUSE of the caffeine!!!

Many migraine/headache medications contain caffeine
because (with most people) caffeine helps.

For example Tylenol with codeine contains 15 mg of
caffeine.

Anacin contains 32 mg of caffeine.
 
I just found a caffeine content comparative table
at
http://www.stashtea.com/caffeine.htm

a cup of green tea contains 1/4 of the caffeine in a
cup of instant coffee.

So our reader (at Topic #14 - migraine
www.fms-help.com/042008.htm ) by drinking four cups
of green tea is getting the exact same amount of
caffeine there is in a cup of instant coffee!

I would still recommend green tea over coffee for many
health reasons/health benefits over coffee,
 but at 1/4 the caffeine of coffee, green tea is not a
caffeine free drink at all
!"
Thanks for this correction and clarification.
 
 
4.  ADRENALS
Lengthy but informative comment from a reader--
"As a person who has been dealing with severe adrenal issues for the past 6 years I can add a lot to this discussion. I started out with AI (Adrenal Insufficiency) and ended up being diagnosed last year with Addison’s Disease, which is when your adrenals don’t function, or lose a majority of their function. This can be the entire adrenals; or in my case just the part that makes cortisol/aldosterone. I still make adrenaline and nor-adrenaline, which is made is a different section of the adrenals. If you suspect that you have adrenal problems; DO NOT, I repeat, do not start using any medications such as Cortef (synthetic hydrocortisone), Natural hydrocortisone (made from a yam base), Isocort, over the counter (made from sheep adrenals but it DOES contain hydrocortisone), or prednisone, BEFORE you are tested.
 
I can share from experience, in ANY case, you MUST have a 4 part cortisol measurement. Doctors will want to test A.M. blood only, or a 24 hr. Urine cortisol, but these are not as diagnostic as a 4 part, which is usually a saliva test, done at 7:00 a.m., noon, 5 p.m. and bedtime. We make the majority of cortisol in our bodies before 8 a.m., however I have seen test results where there is nothing in the morning and spikes at night. You can easily see from the test what your body is doing on a particular day.

You DON’T need a doctor to order this test, which runs about $120-$140. It can be ordered from http://www.canaryclub.org. They use the same labs as my doctor here in Houston; Diagnostechs and ZRT. And at the same time, they offer other tests such as hormones and thyroid measurements. They are extremely accurate, as I’ve had concurrent ones done at both labs and blood tests at my doctors with the same results.

If you suspect you have serious Adrenal Insufficiency, it’s prudent to see an Endocrinologist to have an ACTH Stimulation Test, which basically is just a morning shot that stimulates the adrenals to produce cortisol within a certain time frame, and if they don’t they can diagnose you with Adrenal Insufficiency. BUT, you CANNOT be on any form of oral hydrocortisone to have the test run and once you start the medication, it’s extremely hard to wean off to take the test.

Regarding your question about adrenal supplementation. If you take adrenal extracts, drops, herbs, etc. these do not cause the adrenals to become “lazy”, however, there are varying degrees of success with these therapies and they rely on the fact that the adrenals are healthy enough to ‘regenerate’, which mine were not. There are MANY people who have had good success with them.

If you have a baseline saliva cortisol done, it’s EASY to tell from subsequent tests whether the therapy is effective. I tried them for nearly 4 years and spent 1000’s of dollars on ACE (Adrenal Cortex Extract), Mil-Adregen, Licorice Root, Ashwaganda, Siberian Gensing, consultations with homeopaths at the Clymer Healing Research Center in Pennsylvania, but my adrenals continued to decline.
 
Plus, if your adrenals really ARE declining then you need to see a doctor for a morning blood baseline measurement of ALDOSTERONE, which is made in the adrenals and controls sodium/potassium ratios in the body. If you are having regular CBC (complete blood panels) and notice your potassium is very high, this can also be an indicator of declining adrenal function. Also, if you crave salt all the time, or your skin is changing pigment, becoming darker or yellow, this also a good diagnostic indicator.
 
Each person is different, however, the school of thought is that if you take more oral hydrocortisone than the body needs, it will begin to feedback to the adrenals and tell them to make less. Not taking more than what you need is called a ‘physiologic dose”. For most people, this can be 15-20 mgs. a day. But, I again stress, the ONLY way to tell is to monitor this with saliva or blood tests. If you see morning baseline cortisol measurements declining, you know for certain the adrenals are responding and making LESS.

Once you are totally dependant on hydrocortisone, then you are “technically” an Addison’s patients and being on complete hydrocortisone therapy is a slippery slope. In my case, I have to have syringes of Solu-Cortef (which is a liquid form) for emergencies, because in the event, say, of a car accident, or even vomiting the body cannot make the cortisol it needs and must have it some way if it cannot be ingested.
 
That being said; many people with Chronic Fatigue and Fibromyalgia find they greatly improve when their adrenals are addressed AND they find out whether their thyroid is working. There is an interesting web site: http://www.drrind.com that is pretty accurate in it’s instructions on body temperature testing to help diagnose adrenal/thyroid issues. But in short, if body temperatures are low and erratic, it usually indicates adrenal, if low and stable - thyroid. If your temps are really low, less than 97, it’s pretty certain you have some kind of hormonal issue.

IF you suspect you have adrenal problems AND thyroid problems concurrently, the adrenal problems have to be addressed before thyroid because you can run the risk of overstressing the adrenals. This happened to me and I became extremely ill when we tried to introduce first Armour Thyroid, then Synthroid. This is mentioned in the ‘contraindications’ section of both meds as well as in the Physician’s Desk Reference.
 
Have your TSH, FREE T4 and FREE T3 and a thyroid antibody panel done at your doctor’s office or again order it from http://www.canaryclub.org. It’s a blood spot test where you just prick your finger and deposit the blood drops on a special card,
 
The thyroid panels are more expensive than the cortisol panels, but for people whose doctors are uninformed or non-responsive it’s worth every penny. I again can’t stress enough, the FREE’s are the best indicator of true thyroid function, as Free T4 is the ‘storage’ hormone in the body and it converts to Free T3, which is the ‘active/energy’ portion. In my case My TSH is 1.4 (Excellent), Free T4 mid-range (OK), but I’m WAY below range on T3, which is why I have been having debilitating fatigue. Had my doc not tested this, we would not have known that I was not converting the storage to the active hormone. MOST doctor will not test the FREE’s without you badgering and insisting on it.

Here is a quote from an article on T3 from the National Institutes of Health--
 
'Decreased T3 function exerts widespread effects throughout the body. It can decrease serotonin and growth hormone levels and increase the number of adrenal hormone receptor sites. These effects may explain some of the symptoms observed in WTS (This is something called Wilson’s Syndrome). The dysregulation of neuroendocrine function may begin to explain such symptoms as alpha intrusion into slow wave sleep, decrease in blood flow to the brain, alterations in carbohydrate metabolism, fatigue, myalgia and arthralgia, depression and cognitive dysfunction.'
 
Don’t these symptoms sound familiar????  This is now the first time in 5 years I stand a chance at some real progress as we recently found an oral hydrocortisone I can tolerate and will begin T3 replacement therapy in the next few weeks.  Sorry this post is so long….but I have spent the last 5 years researching, studying, praying to understand the whole adrenal/thyroid component of this illness."
 
Comment from a reader about adrenals--
"You had asked www.fms-help.com/042008.htm if  anyone has a thought on whether Adrenal supplement weaken your own adrenals.    From all  I have read, specially  Standard Process website (a company respected by chiropractors and has been around for decades here in Wisconsin)  and also Wilson's book on adrenal, the answer seems to be that  the long term use of actual adrenal glandular  could do that,  but the salts  (minerals) made with complexing these adrenal components with mineral salts , a special process,  does not cause such a problem since  it only provides food and mineral to your own adrenal gland.  Also, a point to keep in mind ,  too much adrenaline in the blood equates with increased muscular pain since adrenaline tends to contract muscles, leading to pain."
 
 
5.  FIBROMYALGIA IS A DISEASE - NOT A SYNDROME
From North Texas Fibromyalgia Support and Meetup Group - http://fibromyalgia.meetup.com/285--
"We had Dr. Kenneth Kippels speak, and he said that there are evidences that prove that Fibromyalgia changes multiple systems within the body and therefore is definitely a disease. They can prove by certain changes within the blood, changes within the brain tissue and destruction of or changes to the adrenal glands, thyroid and pituitary that yes, Fibromyalgia is not a Syndrome, it is definitely, a disease!"
 
 
6.  NITRIC OXIDE & FIBRO
From a reader--

"I keep stumbling on something I never heard of before. This is the third time in two days.  It has to do with Nitric Oxide  http://molecular.biosciences.wsu.edu/Faculty/pall/pall_main.htm - The fifth principle is the most important one for the sufferers of these illnesses and for the dedicated physicians and other health care providers who are trying to effectively treat them. We need to lower the NO/ONOO- cycle biochemistry for effective treatment; treating symptoms will never be very effective because symptomatic treatment does not get at the basic cause of illness."

 
 
7.  CORTISONE
From a reader--
"I think one of your readers [ www.fms-help.com/042008.htm ] may have been thinking of supplementing with cortisone to the point that the body no longer produces its own supply adequately.  For adrenal support I have been taking Dr. Teitelbaum’s Adrenal Stress End formula for less than a week, and I already have a tremendously improved amount of energy and focus.   Along with 5 mcg of Cytomel, I have been a new woman with much less pain and fatigue."
 
 
8.  FORCED EXERCISE
From a reader--
"I found the article on forced exercise very interesting [see www.fms-help.com/041508.htm, topic #10 ].  I fell on the ice over a year ago and spent months in therapy on my shoulder.  When they tried to force my arm in an upward backward position--it virtually went into trauma.  When they gently moved it slowly, it would gradually relax.  Anyway, I learned a long time ago to pace myself to maximize my energy level."
 
 
9.  IODINE
From a reader--
"The Iodine article [ www.fms-help.com/042008.htm ] was interesting. . . my blood test shows thyroid deficiency even though I am on prescription.  The naturopath has now put me on some kelp.  She recommended Iodol in the beginning, but I have been allergic to the iodine solution injection you take when you have xrays.  Maybe the natural (?) Iodol would be a good idea."
 
 
10.  DOM'S SUPPORT GROUP
260+ newsletter readers have joined the message board at http://health.groups.yahoo.com/group/dominie.  I suggest signing up for the NO EMAIL / WEB ONLY option.  Otherwise you will get tons of email.   You can check the message board online when you have time and also search by topic.
 
 
11.  THYROID, ADRENALS, DIGESTION
From a reader--
"I decided to take the plunge and go wholeheartedly into the naturopathic world last June.  As you know, it (appointments and pills) is very expensive.  The original diagnosis showed that my adrenals were not functioning; since they are the administrator of the body systems, all my minerals were ending up stuck in my kidneys--thus, osteoporosis.  It appeared that everything else in my body was not at functional capacity as well.  When my reports came back (urine/saliva) after the beginning of this year, they didn't seem to show much improvement.  Neither did I feel better. Last month, I was ready to ask for a maintenance program and felt discouraged.   However, when my blood test from last year was compared with this year, there was improvement in all my body systems except thyroid.  The main culprits appear to be thyroid, adrenal, and digestion.  I am using extra natural adrenal supplementation for stressful times.  I am also using (my own choice) balanced amino acid complex and a natural sleep combo.  As you know, it is a continual process of learning what helps and what doesn't."
 
 
12.  MAY 12 - FIBROMYALGIA AWARENESS DAY
Does anyone know of events to participate in or letter writing campaigns this year?  I'm pooped out.  Write me at dombush@bellsouth.net.  Our last big "hurrah" was the Million Letter Campaign in 2005 www.fms-help.com/letter.htm.  Sadly, I'm not sure it did much good, although many thousands of letters were mailed to media.  Maybe the most effective way is to just try to educate those around us - friends, family, neighbors, co-workers (assuming you can still work), doctors, clergy, and lawyers.
 
 
13.  BROMELAIN & GLUCOSAMINE
From a reader--
"The supplements I am using are Bromelain and glucosamine cream with msm. The Bromelain is (pineapple enzymes), it reduces inflamation,boosts the immune system, help with digestion, helps with depression.The glucosamine cream with msm is a a topical cream you apply on site of pain, it is  used also for arthritis. The Bromelain is to be taken  3 times a day to treat fibromyalgia symptoms and the cream can be used as needed.These are the two supplements that made a big difference in my life and by spreading the news  i am hoping  to help others.  By the way bromelain is not to be used with any blood-thinning medication,tetracycline and aspirin, because of the increased risk of interaction. Hope you find the information useful."
 
 
14. ANTIBIOTICS & FIBRO
From the message board--
"Someone mentioned that antibiotics helped get rid of their FM symptoms. (I
assume temporarily.) That is possibly related to Dr. Pimentel's work. He
noticed that most people with FM had an overgrowth of bacteria in their
small intestine. More bacteria corresponded to more pain. He used
antibiotics to bring the bacteria numbers down, and then medication to
improve the body's mechanical removal of the excess bacteria. I think
presently, he may have added a supplement of bile to the treatment protocol,
to help keep the bacteria numbers down.

If the excess bacteria in the small intestine is of the type that creates
lactic acid (usually it is), then this could be one of the sources of excess
acid in the body. The excess acid interferes with the energy of the
cells --- they can't take in oxygen properly. So you fatigue easily and your
muscles hurt. The excess bacteria also interfere with the absorption of B12.
They also break down conjugated toxins that the liver has dumped in the
intestines, making the liver's job a whole lot harder, as the toxins can now
be reabsorbed.

By the way, you need adequate T3 thyroid for the proper mechanical removal
of the excess intestinal bacteria. I think that is one of the reasons that
Dr. John Lowe's use of a lot of T3 is helpful."
 

 
15.  DISRUPTED CIRCADIAN RHYTHM
"Researchers found that a single amino acid change in a protein triggers a chain of genetic events involved in internal timekeeping."
http://articles.mercola.com/sites/articles/archive/2008/04/24/changing-your-clock-new-research-explores-how-your-body-keeps-time.aspx
 
 
16.  WHY YOU HAVE TO GET UP FOR THE BATHROOM MORE WHEN YOU CAN'T SLEEP
Sleep deprivation was found to change the body’s blood flow, leading to:
 
17.  FIBROMYALGIA TALK RADIO
From a reader--
"Live on www.blogtalkradio.com/fibromyalgia - Join Lynne Matallana, president and foounder of the National Fibromyalgia Association, as she discusses National Fibromyalgia Awareness Day and the NFA's "Caring by Sharing" campaign.   Friday, April 25, 2008 from 10:00 am - 11:00 am Pacific Time, 1 pm EST  HOW TO PARTICIPATE:  Listen live at www.blogtalkradio.com/fibromyalgia  or  Call in to listen live at (646) 915-9615."
 
 
18.  ALTERNATIVE MEDICINE HELPING
From a reader--
"I sent you the water cure info [ www.fms-help.com/042008.htm ].   I found a doctor - see http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/dr-jesus-caquias-md-e1ec9fc7.cfm - who also practices alternative medicine. He told me that when he was working on his doctorate, he saw a blood sample of a fibro patient.
It was magnified 400 times and he saw that it had yeast and that it multiplied even more in 6 hrs.
I have been so far 3 and a half weeks on the water cure, billions of probiotics, flaxseed, omega and
borage oils.   Calcium, magnesium in a solution, a non dairy, non sugar,non gluten diet, B-12 injections.
It has been so far with very positive results. I feel great and to think that felt that i was dying and writing a will.
 If anyone is interested in seeing this doctor. They will have to come down to the Rio grande Valley.
He comes to Brownsville, texas a few times a month. The rest of the time he is in Austin Texas.
He treats Autism , and has had very good results.  By the way , there are people out there already
driving their cars who had Alzhiemers.  Great results with that too.
Of course, thank the Lord above all !!!!"
 
 
19.  U.K. FMS/CFIDS SITE
http://www.fibromyalgiasyndrome.co.uk
General information.
 
 
20.  UPPER BRAIN STEM OVER-FIRING CAUSES INSOMNIA & FIBRO
http://www.askdrjohnson.com/fibro.php 
This site has a short explanation of what causes fibromyalgia (brain stem malfunctioning) and a very interesting video by chiropractic neurologist, Dr. Michael Johnson.   He says that fibromyalgia pain, insomnia, fibro-fog, IBS, dizziness, light sensitivity, heart palps, etc. are all caused by over-firing of the upper brain stem. 
 
Dr. Johnson says most fibromyalgia patients have had severe stress - physical, emotional, or sexual abuse.  He gives oxygen to fibro patients for their cerebellum to get more oxygen.  This helps most of them!  He also uses auricular therapy (acupuncture without needles called stimflex on the ear, which slows down the upper brain stem).   He also uses auditory stimulation, visual stimulation, olfactory stimulation (sense of smell), and says eye exercises helps fire the lower brain stem (which explains why rolling my eyes upwards repeatedly when I'm trying to go to sleep helps relax me - and most of us focus our eyes straight ahead 99% of the time because of wearing glasses, watching TV, being on the computer or reading). 
 
He also uses warm water in the ear which stimulates the semi-circular canals.  He says that exercise of the arms helps this brain misfiring problem more than exercise of the legs, because arm exercises help a different area of the brain (which explains why just a few minutes of lifting my 3-lb. weights relaxes me and helps me yawn and get sleepy at night when I feel tense).   He recommends L-tryptophan from Montef (pharmaceutical grade) which helps build up serotonin, also Omega 3's (natural anti-inflammatory), and adrenal support (from Metagenics).  Dr. Johnson says you need HIGH QUALITY nutritional supplementation (not Walmart). 
 
Dr. Johnson's book "What Do You Do When the Medications Don't Work?" is on Amazon at http://www.amazon.com/Medications-Treatment-Dizziness-Fibromyalgia-Conditions/dp/0974581801/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1209780259&sr=1-1 - Read the reviews - they are all 5 stars except for one skeptic. 
 
Dr. Johnson thinks that Trazadone is the best med for fibro patients for sleep, but on that I differ!  (You can read what Trazadone did to me at www.fms-help.com/sleep.htm.)  After I watched this video, I understood why certain things I am using now are helping (e.g.,  a supplement that takes oxygen to the brain, certain essential oils by inhaling the smells, audio tapes to balance the brain, etc. - my complete list is at www.fms-help.com/what.htm). 
 
I think this doc is right on about the whole fibro dilemma!   I would love to get some feedback from readers.  I am especially interested in his treatment of insomnia, which I have suffered from since I was 16 www.fms-help.com/insomnia.htm.   I am now 56.  I have to take 3 different meds to sleep most nights, but I am not complaining - because I found that going without sleep was worse!!!   You just can't function without sleep!
 
Has anyone been to Dr. Michael Johnson?  He is located in Wisconsin.  There are also other chiropractic neurologists around the country who use his techniques.  Please write dombush@bellsouth.net with any info.  Thanks for any feedback!
 
Below are responses I received from readers who viewed the same information about Dr. Michael Johnson (referenced above):
 
Reader 1--
"Thank you so much for this. It has given me so much hope. It makes perfect sense. When I was first diagnosed I went to a health food store here called Sun Harvest. I got a little booklet on Fibro and it mentioned much of what he mentioned and suggested L-Tryptophan and the others. I took them when I was working and could afford them. Now I can’t afford any of it until my disability comes through. I no longer have health insurance and I am 59 so even with disability I wouldn’t get Medicare until I am at least 61. You have to wait 2 years after your case is approved. I am going to figure a way to get this book. The other thing is it explains why the bio-identical hormones I was taking helped so much.  As an RN this made so much sense, I just cried as I watched it."
 
Reader 2--
"Interesting you sent me this as I just found this site a few months back and also felt it very accurate. They have a place on their site where you can try to find a local doc who does the protocol. The closest doc to me was 3 hours away, and he did a free consultation. I went in and had the neurological testing and indeed I had all the things this website talks about. I desperately wanted to do his protocol but he said I'd have to come in 2x/week for the first month, then 1x/week. He said the drive alone (6 hrs round trip) would cause so much stress and fatigue it would undo the benefits he could give me. However I continue to search for a doc closer to me. I highly recommend if any of your readers can find a doc who does this to give it a try!!!  That said, I found a doc who does part of this protocol, along w/ Dr. Tietelbaum's, Dr. Bennetts,  and Dr. Lowes (T3 thyroid therapy). He works heavily on the CFS stuff - viral/, mycoplasma and Chlamydia pneumoniae, Herpes Viruses, EBV,  etc. He does labs for a long list of viral, bacterial, and fungal infections as well as testing all metabolic functions.  After 1 week I'm already seeing  results. He uses hormones, supplements, vitamins, and medications in his protocol.  The thing that is helping me most right now is I'm injecting oxytocin into my leg once a week. It's the hormone women make when pregnant/nursing and it's responsible for a large range of metabolic functions - I'll put a link on that below. I'm also taking injectable magnesium and B-12 plus vitamin D3 and a few other things. Vitamin D3 is a big part of his protocol. He lists his protocol on his website plus has a list of the top research articles for the last 15 years for FMS/CFS - (would be a great handout to give a doctor who doesn't know much about it). He believes that we are genetically predisposed to it, then PTSD, an accident or trauma sets it off causing neurological malfunction, HPA Axis to stop functioning properly, and a weak digestive and immune system. He treats the sources of all those problems. Once all those problems develop he says our metabolism slows down to a similar state of an animal in hibernation state and we can no longer produce energy. He brings patients out of the hibernation state w/ hormonal and nutritional supplementation, then works on building the immune system, fighting off the molds, viruses, etc,  He is in Sacramento CA but there are other docs around the country who use a similar protocol - you could probably find on his website or email him.  Here is his site - I recommend you go through all of it as there are some great resources.
Here is his site (Dr. Powell):
Article on oxytocin: (you have to scroll down past the adds)
 
Reader 3--
"What Dr. Michael Johnson has to say about the firing of the upper brain stem is highly interesting. There is a strong serotonergic pathway between the brainstem and the hypothalamus. Plus in fibromyalgia, the hypothalamus is reacting as if it is under the influence of too much serotonin. His recommendation to take tryptophan therefore seems incongruous. Too much tryptophan or serotonin can keep you awake. Too much serotonin is harmful, and can make fibromyalgia worse, as in that recent post about a person having been diagnosed with fibromyalgia but who actually had the serotonin syndrome. The symptoms are similar. One must be very careful about how much tryptophan or 5-HTP that they consume."
 
Reader 4--
"My first Feldenkrais therapist gave me a number of eye exercises to break the neurological patterns and relieve pain.
things like
1. turning head slowly left back to center taking your eyes with you 5
times ....  then right back to center,  taking the eyes with the head 5
times
2.  repeating it all but leaving the eyes focused straight ahead while
turning the head
3. turning again  but having the eyes moving counter to the movement."
Wow!  This is so interesting!  I read a long time ago that some therapists are using something like blinking light therapy to help people get past emotional trauma.  It causes the patient's eyes to go back and forth rapidly and repeatedly.  Interestingly, I know an older woman who suffered much trauma as a child.  I noticed that when she is under stress, her eyes move rapidly back and forth so fast that it seems almost humanly impossible!  Maybe this is her subconscious way of relieving neurological and psychological stress....the brain and eyes are connected.  Also see Dr. Johnson's other site www.lifechangingcare.com
 
 I also got this comment from a doc who knows Dr. Johnson--
"Dr. Johnson has been a huge influence on my life and on my patients' lives.  There are not too many people like him.  He is brilliant and he cares."
 
Also, I found out that Dr. Johnson addresses this issue of neck manipulation in Chapter 10 of his book, referenced above.

 
21.  COLDS
From a reader--
"I would however like to recommend this for colds: Cold Calm, homeopathy from Boiron. Very cheap but excellent for me for any sniffling/cold or cough.  Also their stomach upset medicine is great. And their cough medicine with honey combined with the Cold Calm stops my coughs which for the longest time would not let me sleep. I was thinking this may help you so you wouldn't have to take the generic nyquil which I imagine has chemicals."
 
 
22.  HOT FLASHES
From a reader--
"Hot flashes: what I have found is to stop the sugar, and use flax seed oil (this has helped my friends who have not been helped by other things), and if you have never tried Kefir it is wonderful stuff. I mix in a little honey along with the ground flax and my health has been so much better.  That remifemin stuff helps a lot of folks but some folks tell me it doesn't work."
 
23.  CURAMIN
From a reader--
"I wanted to tell you about Curamin.  I stumbled upon this in an article in the magazine given out at our Naturally Yours grocery store here.  Curamin is a natural supplement for inflammation and pain."
Thankfully, I have no more fibro pain (that was only during the first 14 years!)   A list of things that helped my pain is at www.fms-help.com/painrelief.htm.  Also, I found a place online to order a free sample of Curamin - http://curamin.com/sample.php.
 
 
24.  CHIROPRACTIC DANGER
From a reader--
"Some perfectly healthy people are dying of strokes after neck manipulation."
Watch video at http://www.neck911usa.com/vide.htm - this is cause for alarm!  I have a wonderful chiropractor for the past 15 years - he is the only one who can "fix" my upper back and neck problems when they occur.  I only see him about 3 times a year.  I have had chiropractors in the past who were very rough and I did not continue with them.  However, having just heard back from Dr. Michael Johnson (#20 above), he says he addresses this issue in Chapter 10 of his book (mentioned at #20 above).
 
 
25.  SLEEP SUPPOSITORIES
From a reader--
"I finally got relief using suppositories with 5-htm and tryptophan from a chiroproactor in S. FLorida - he saved my life.  I control the restless legs with iron.  But its sure not perfect - however, I am so grateful when  I get sleep as I didn't used to at all.  About my 'cure' - the reason the 5-htp now works is because it is in suppository form - it's amazing because it did nothing for me orally.  My Doctor has literally saved my life - I don't think I can emphasize that enough.  You might want to give his suppositories a try - I think it would get you off all sleepp meds - they work with no side effects - must make you very relaxed - I take my suppository around 10pm go to bed aroung 11:30 or midnight.  Still don't have normal sleep patterns but I sleep - I would have been dead by now if I didn't find Dr. Cafarelli.  Spent all or our money, ruined my career the whole nine yards - I don't have to tell you."
 
 
26.  IMMUNE POWDER HELPING
From a reader--
"I can't begin to thank you enough for the immune [powder].  I didn't get back in touch because I wanted to be sure.  But from mental clarity to emotional stability to glands going down to more physical stamina.  I couldn't believe it.  I am only taking it in the morning."
For immune powder info, write dombush@bellsouth.net.
 
 
27.  DISABILITY TIPS
From a reader who just got SSD--
"To let you know so that you can pass it along to others trying to get their Social Security.    Talk with your attny.  Make sure what your states guidelines are for filing.   Also get as much medical evidence as you can.  Make sure that your doctors keep good records and if they say that you can only sit for an hour a day make sure that its in their records.   If they say that you must have more than normal breaks during your job make sure that its in their reports also.  Any thing and everything that would help you make sure that its in the doctors records.  You have a right to your primary care and all other doctors records.  You can get them at any time by asking for them from the doctors office.   If there is something in there that either your doctor hasnt told you about or that you dont agree with then make sure that you speak with your doctor about it.   Just make sure that there is nothing in those records that will come back and bite you in the butt.   You keep track of all that was said to you from your doctor and then if its not in his report then ask why.  Its your life and if you cant work any longer then make sure that you have everything right at hand to prove that you cant work."
I have more tips from readers who were successful in getting SSD at www.fms-help.com/disability.htm.
 
 
28.  CUBA
Please respond directly to Susan shorn@rogers.com--
"My husband was diagnosed with severe fibro, severe chronic fatigue, severe insomnia, ... two years ago.  He was in a near fatal car accident in 2001 while doing missionary work in Kenya.  He suffered multiple serious injuries, including a concussion which resulted in no recollection of the accident.  The reason why I am writing to you, is that my husband has been to Cuba four times since his diagnosis.  Each time he goes, he is pain free, and his sleep quality improves dramatically.  The benefits of the trip usually last upon his return to Canada, for as long as he has been away (if he goes away for two weeks, he is able to function once he returns for two weeks).  It is quite remarkable on the one hand, and very sad on the other.  It reminds me of the movie 'Awakenings.'  It is heart rending to watch him slowly deteriorate to the point where he is no longer able to function.  I know that Americans are not permitted to travel to Cuba, but I was wondering if there are any other fibromites that have experienced the same thing? Some people think his problems are psychological in nature, and that the benefits that he experiences there are all in his head.  Would you mind to pose the question to others on our behalf? - Susan"
I have 2 thoughts: First, climate - or even more sunlight - may be the main factor. >Secondly, perhaps there is less electromagnetic activity in Cuba (less computers, cell phones, electrical lines, etc.) 
 
More from Susan--
"We chose Cuba because it is so inexpensive to travel there.  We always manage to get a last minute flight and a great deal.  This last time, my husband was able to travel for $1005, for two weeks - all inclusive: flight, taxes, hotel, and meals.  He has someone help him at the airport with a wheel chair, and then is able to tolerate a short bus ride to the resort.  Within hours he feels like a new man.  It is remarkable. 
I was intrigued by your thoughts on the electromagnetic activity.  You may be right.  Cuba has very little industry, they do not use pesticides, and most people do not own a computer or microwave."
 
 
29.  POEM FROM A READER
 
"WHAT IS MY FUTURE?"

by Susan B. Harvey suswiland@yahoo.com


"What is my future?
Today I’m feeling pain and torture.
Where do I go where do I belong?
All I want is to live and be strong.
 
How do I cope with this uncertainty?
This daily pain makes me struggle to find clarity.
I’m pulled in directions like the angry sea.
All I know is I want to be ME!
 
Two dreaded diseases are slowly taking my life away.
“You will just have to live with it,” the Doctors say.
I’m always in turbulence each day feeling old.
Osteoarthritis and Fibromyalgia have taken their toll.
 
I try acting like nothing is wrong.
All I want is to dance and sing my own song.
I’m crying inside hiding my pain.
Everyday my body is in a strain.
 
The pain is not all in my head, it’s real, real as can be.
I try to ignore by counting, breathing, and praying to Thee.
I’m really glad when the pain pills kick-in for me.
Some days I need one, two, or even three.
 
People look at me and say “why are you looking so mean?”
I say with a smile “the pain today is extreme!”
Yes, my hair is in place, with my makeup a glow.
If they only knew, how much I don’t want the pain to show.
 
My Primary Physician NOW, knows what to prescribe.
My Medical Insurance has the power to over rule and deny.
How can my insurance do this to me?
All I want is good sleep and to be pain free.
 
I’m trying to stay positive and do what the EXPERTS say.
I agree to try anything to brighten my day.
I’ve tried Yoga, walking, and massage to mention a few.
Special diets I’ve tried but other complications start to brew.
 
These dreaded diseases cause stress as a wife.
I really want my husband and me, to have a passionate life.
The love is there in my heart, that’s for sure.
Why does it have to be so difficult to endure.
 
My mind is sharp as can be.
I’m constantly proving myself to me.
Some say I procrastinate, that’s not true.
The pain makes me stop instantly, what I’m about to do.
 
Have patience with me everyone please.
This is not a joke, I’m not trying to tease.
I can’t keep up like I wish I could.
My body will not cooperate as it should."
 
 

30.  DOM'S UPDATE   
Busy, busy, busy!!!  I'm feeling well these days, thank God!!!  Playing the piano/organ at a new church, filling in for musicians who have health problems.  It is very challenging, and I have to practice a LOT, but I am very happy there!   Also, my stepson is getting married Saturday, then the following Saturday is our School of Music Spring Recital.  Yipes!  So I have to keep after my health VERY diligently now!  Any little thing that pops up, I have to fix right away because I can't afford to go into a disabling slump again!  A list of things I am using to keep me going is at www.fms-help.com/what.htmStress is my worst enemy, so I avoid it as much as possible.  When I can't avoid it, I am learning to pray and depend on the Lord more - He is strong when I am weak, which is often.  I hope one day scientists will figure out what is wrong with our brain stems (see Topic 21 above) - then I won't need to write a newsletter, because the docs will know how to fix us.....what a wonderful day that will be!
 
Dominie

II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God."  Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.

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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought.  This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.