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From Our Readers – Comments & Suggestions 01-27-10

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NFA’s Fibromyalgia AWARE  Magazine Available Online Free

FYI, the Winter 2010 issue of the National Fibromyalgia Association’s Fibromyalgia AWARE magazine is available online for free. (Go to www.fmaware.org.) You have to register with the NFA to access the magazine free. – B


Study of Thyroid Hormone T3 for Fibro at Stanford

When I was looking for Fibro information at the Stanford Pain Management Center  [Palo Alto, California], I came across this announcement of a clinical trial of thyroid hormone T3 as a treatment for fibro symptoms – http://snapl.stanford.edu/t3/. To be eligible you have to have daily pain & can’t have thyroid disease, high blood pressure, or diabetes. – S


Info on Low Dose Naltrexone for Fibromyalgia Pain

This is a new LDN Science site owned by Scientists and Doctors with abstracts of all clinical and pre-clinical trials (http://www.ldnscience.org/low-dose-naltrexone-ldn/published-research-about-ldn) on LDN, opioid growth factor, and related therapies. This is the best LDN site I have seen by far. I highly recommend this site to everyone who is interested in learning about LDN or looking for information to take to their doctor and share with friends. There is a newsletter so be sure to sign up for updates. – J

FM Patient’s 1-Year Low Dose Natrexone Testimony. I thought I’d share this one. This is a person from the LDN Yahoo Group. (I’m on my 3rd month of very low dose for FM and OA issues.)

“Today is my 1 year anniversary for taking Low Dose Naltrexone (LDN) for my fibromyalgia. What an interesting year it has been. As we all do, I started out with high hopes. I started out at 4.5 mg LDN at bedtime and was one of the fortunate ones who didn’t have any side effects. About 6 months previously, I’d had a sleep study done that showed that I was getting zero REM sleep. After a few days I realized I was dreaming again. I also started to feel as though I had more energy.

“It took about a week and a half to notice that my pain wasn’t as severe, but that seemed to vary a lot in the next six months. I started out with a daily pain level of 6-8 on a scale of 10. That was with taking Tylenol Arthritis (the only pain drug that didn’t cause me stomach upset or other problems) around the clock. Gradually as my pain lessened I noticed I was forgetting to take a dose here and there. Now I rarely take anything and my pain levels average 0-3. I then noticed that I didn’t seem to need to take my Mirapex for my restless legs syndrome as much. I started cutting back on it until now I take 1/4 of what I did before. Since I was feeling better, I decided to see if I could cut back on my anti-depressant too. I gradually cut back on it until I wasn’t taking or needing to take it any more.

“At around the second month, I caught (or my body recognized) a severe virus. I was really sick, but for only 4 days. Usually I would end up in the doctor’s office or even the hospital, but even though my husband kept telling me I should see the doctor, I kept saying I didn’t feel that bad yet. For the first time in years I didn’t need an antibiotic but fought off an infection myself. At around the 8th month I did get a bladder infection for which I did take a dose of antibiotics, though. Otherwise I haven’t really been sick since. Very unusual for me to go that long without being sick with something.

“A year ago, I was in bed 16-18 hours a day. I had to force myself to get up and just do the basics of life. Now, I’m cooking again for my husband. I can vacuum the floors again. I’ve even applied for a job. I can’t believe what a difference a year has made. I want to thank Stanford University for doing a trial of LDN for people with fibromyalgia and Crystal (Angelindisguise) for mentioning it on the Restless Legs Syndrome Yahoo group. I also want to thank all the wonderful people that I’ve met along the way in my journey to learn more about LDN and help others learn about it too. Hopefully, my example will help others get some real relief from fibromyalgia pain as well.”


The Good News Re MD Fear of Prescribing Opioids for FM Pain

This is good research (replicating prior research) showing that the main excuse (fear of addiction) for not prescribing opioid pain meds is not a good one. I hope this will be convincing to some doctors who need a push. (No pun intended…) “Little Risk for Addiction From Long-Term Opioid Use in Select Chronic Pain Patients,”  by Pam Harrison, Jan 20, 2010. – V


Text of Mikovits Lecture?

Q: I am extremely hard of hearing and I cannot hear videos. Is there a possibility that the Dr. Mikovits lecture can be put into text form?

A: Blogger “thefreeprisoner” has transcribed the first 27 minutes – Annette Whittemore’s introduction and the first part of Dr. M’s lecture. The link for that is at Phoenix Rising’s XMRV Forum.  One attendee recorded all the audio, but transcription of the remaining 2-plus hours would clearly be a huge task.

Video of Dr. Bell’s Jan 15 XMRV Lecture in Orange County

The video of Dr. Bell’s presentation is now up on his site – www.DavidSBell.com. Click on “The Barborka Family Presents…” To enlarge the screen for viewing click on the vimeo symbol (then esc to minimize again). Also, the ChronicFatigueTreatments blog has posted one attendee’s summary of the presentation.

Dr. Bell’s conclusion (“slide courtesy of Dr. Nancy Klimas”):
• This new virus is a very big thing
• It is a very hopeful thing
• The research necessary to bring treatments that are effective is already being mapped out
• You can make a difference
• Volunteer
• Give
• Spread the word  – P


Nonaerobic Exercise Ideas for FM

Yoga is a good addition to exercise for fibro sufferers. Hatha yoga is a very gentle yoga [“likely to be slow-paced stretching with some simple breathing exercises and perhaps seated meditation”]. Might also consider adding Vinyasa or more vigorous forms of yoga that are very popular these days. – R

I tried yoga, no go for me even though it was a class for people with limitations… I liked “t’ai chi chih!” The arm movements are easier for me and haven’t set anything off. I want to start a laughter yoga group… Now that’s exercise, laughing… I always feel exhausted but so good if I get the chance to get a good belly laugh – V


Mayo Trial of Amygdala Retraining – Waste or Worthy?

Re: “Mayo Clinic Trial of Amygdala Retraining for CFS and FM Now Recruiting”

What about symptom cyclicality? My son – like many PWCs – has a relapsing/remitting pattern of disability from CFS where he does well until the end of Oct/early Nov, crashes through the mid-spring, & then slowly builds up his strength. If he were in this study in April, it might show “success”; if he were in this study in Oct, it would show to be devastating. This issue of seasonal timing has to be taken into consideration in any CFS treatment trial. – D

It’s definitely doing something for me.  I fall into the FMS/Lyme disease category. FMS diagnosis 10 years ago and 2-1/2 years ago optic neuritis with neurological/new symptoms/very sick. Positive IGENEX. All kinds of herbal programs for Lyme with no improvement. I’ve been doing the amygdala re-training since about April 08. I saw good improvement within a month -brain fog improved and entire nervous system calmed down. Eye pain went away. Now 8-9 mos into it, I have hit a plateau but still doing MUCH better than where I was a year ago before starting the techniques. I’m able to function well, travel for work, have the joy and excitment back in my life. Am I cured? Not yet. I still suffer from the neuro symptoms, but much much less and my tolerance to stress is much higher with no increase in symptoms. When I have a setback I recover much faster.

….All in all I’d say it is definitely doing something. I’m constantly amazed by the negativity regarding this program. People are willing to take all kinds of experimental drugs but not experiment using the healing power of the mind/brain/body. I continue to do other therapies as well – but the major difference in my habits has been this program… I know it’s the one change I made where I got major benefit. I’ll check back in a few months and let everyone know if my optimism still holds. This program has given me back hope and a feeling that I am in control again. – H

Guys, why not be really avant-guard and study hysteria or spirit possession or how inadequate mothering produces schizophrenia? I am horrified that the Mayo Clinic is associating itself with this tripe. – T 

I am very disappointed about Mayo Clinic testing this when there are so many other conditions, treatments that are worth studying. – G



Here’s a cute XMRV cartoon.  – E


Check Out Online FM & ME/CFS Dating Sites

Made to order: There is a CFS/FM Yahoo online dating site. People like us hoping to hook up with other people like us. And to share useful information as well. I just checked really fast using keywords “CFS” or and “singles” and at least 3 groups… came up on the first page alone. – A


XMRV Test Refinements – and Costs

Re: “WPI Announces New, Refined XMRV Culture Test.”

Great news! Hopefully this will put to rest the faulty study in the UK. – C

I am so excited about the XMRV findings. The info states that they have decreased the cost to $450. So many of us with CFS and or fibromyalgia aren’t working because we are so ill. I haven’t worked for 17 months as I wait forever to appeal my denial for disability. My lawyer states we have a good case but having to wait 10 months for the appeal has drained me financially. I am sure there so many other people in common with that. The cost of the test is just not practical.

Note: One way to be tested free would be as a participant in a research study by Whittemore Peterson or some other research group. There’s more info on this question and the subject of tests & testing in the Jan 22 Mikovits seminar and Q&A videos. Meanwhile, WPI offers an online questionnaire for people who would like to be considered for participation in current or upcoming clinical trials (or just to include their information in the research database) at https://www.wpinstitute.org/patient/volunteer_form.html.


Need Doctor to Check for Leaky Gut – Referral List, Anyone?

I am most certain my fibromyalgia is now really Leaky Gut Syndrome and am looking for a good doctor in my area. Any suggestions for where to find a list, or good doc who specializes in this? – J


Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “From Our Readers – Comments & Suggestions 01-27-10”

  1. byrdlps says:

    If you’re looking for a Doctor for any of these uncommon tests, I had good results by asking the lab who does these tests for a list of doctors in my area that use their lab for these services. If you live on the edge of the county, etc. be sure to also get the info for the other side of the border, which may be much closer.

    How this came about (many years ago) was that this lab was mentioned in an article from a health store newspaper discussing the ELISA test for delayed reaction food allergies. This used to be Great Smoky Mountains Lab (now Genova Diagnostics 1800-522-4762 http://www.gdx.net)–who also had performed a leaky gut test from a different doctor years earlier. Of course I’m sure there are other labs performing these tests as well, but may not take insurance.

    They covered these tests under Medicare & other insurances, but when I checked with a different lab that this doctor normally used for the test, they told me that insurance didn’t cover it!! (Really, they just didn’t want to be bothered with billing any insurance–& called these alternative!)

    It sure was fortunate for me that I got the code for the procedure & checked with Medicare 1st & found out they covered it before I called this other lab or I might have believed them.We have enough out of pocket expenses with all the other thing we need to take to help our Fibro/CFIDS that are not covered by insurance.

    How “alternative” can these tests be if Medicare covers them & they were developed in the 1980’s?

    I think most allergists (I had them done through a GP claiming to be “holistic”) don’t want to do these tests & wrongly call these “alternative” since there is very little money in it for them. They continue to use the outdated & highly inaccurate (at least in my case) scratch tests since they make a lot of money from them & then can get you to keep coming in for allergy shots—which cannot be given for food allergies last time I checked.

    There is also the fear of saying something “bad” about the food industry since one would not want to end up in court as Oprah Winfrey did for the “hamburger” opinion she espoused. One surely can’t be sued saying bad things about pollens & such.

    Reducing the some of the allergenic load with allergy shots is somewhat helpful, but if your major allergens are foods, avoiding them will give amazing results.

    Frankly, I got much more valuable info from the ELISA (blood) test, which told me which foods to avoid (no drug or supplement that I have ever tried can cancel out these reactions) than finding out I had leaky gut syndrome—no surprise after 30 years of constant gut irritations due to IBS. Any treatment would have limited value without removing the source of the problem if possible.

    How sad that I had to figure this out myself–the only book I had found regarding food allergies as the cause of IBS a few years ago was a book from England. Maybe more have been written lately.

    Another trap to be careful of is the “common food allergens”—for me as it turned out I am not allergic to any of the “common” stuff, but a full third of all the stuff I was tested for. So, it was quite a waste of my time to avoid the “common” food allergens—what a majority of people are allergic to has no bearing on us if it doesn’t apply.

    Over all these years no drug or fiber treatment (surely if one is allergic to the substance the fiber is made from it is even likely to make it worse) ever helped my IBS symptoms, but I got dramatic results from avoiding allergenic foods mentioned in my test report which reduced my IBS symptoms by about 95%!!! One must be very dilligent remaining on ones special “diet” & eat a lot of plain food & read a lot of labels & find out what some of these ingredients are made from.

    Probiotics & L-glutamine are also very helpful to the bowel, as well as only taking half a dose of the diarrhea meds when absolutely necessary to minimize that ricochet effect to constipation & back. But then again probiotics should probably be a basic necessity for everyone like a multiple vitamin—I just increase them if I get any bowel problems & add the L-glutamine. There is a book out about using L-glutamine to treat bowel disorders, but the author escapes me now.

    And, yes you could figure the same thing out with a “rotation” diet, but to test for the same amount of foods it would take about a year on a very strict diet & you find out by going through a painful reaction as opposed to a blood test where the reaction is observed in a lab outside your body–painlessly. The rotation diet is barbaric when the ELISA test is so readily available. It totally changed my life!

    I hope this helps. Cheers, byrdlps

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