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

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Armour Thyroid People – Good News!

I just found out from the folks on the Thyroid Board that the original Armour is coming back in 1/2 grain and 1 grain tabs. This makes my day, even though I didn’t go off Armour with their newer formulation, but was sure happier with the "original" Armour. Everyone who uses Armour is so jazzed with this news. Keep asking if what you are getting is the original or the "newer" one, which many didn’t like…. On refills, etc. the pharm will give you what they have in stock…. – J


Holiday Shopping to Help Lyme!

Christmas shopping? Here’s a way to get some neat stuff, made by people who have Lyme mostly (the Lymenaide Holiday Bazarre – So you’ll be helping them, plus a certain percentage goes to help and Art, books, recycled purses, jewelry, body care products, and more, a lot of really neat things! – V

[Note: Just keep scrolling down to be inspired by all the "booths"!]


Trial Seeking Interstitial Cystitis/Painful Bladder Syndrome Patients

Do you suffer from Interstitial cystitis and/or painful bladder syndrome? …A pharmaceutical company is enrolling volunteers for a clinical research that is studying the safety and effectiveness of an investigational medication to see if it can help to reduce chronic pain associated with interstitial cystitis and/or painful bladder syndrome. You may be eligible to participate in the pain study if you:

• Are male or female, 18 – 80 years of age (women cannot be pregnant, planning to become pregnant or breast-feeding)

• Have had moderate to severe, chronic bladder pain for at least six months accompanied by any of the following:
– Frequent urination
– Urgent urination
– Frequent night urination.

Additional criteria will be assessed by the study doctor to confirm your eligibility for this study. If eligible to participate, you will:

• Be seen by a study doctor

• Receive study-related testing and study medication at no cost.

The Study Is Now Enrolling: For more information please visit

– Interstitial Cystitis Association (Oct 20, 2010)


What We Know About Dementia

"We commonly hear about dementia patients rather than from them. Here, men and women diagnosed with dementia talk about what they’ve lost, what they fear, how they cope and what they see ahead." This video ("What We Know About Dementia" – by Columbia University students is part of the News21 website, where US journalism schools participate in indepth, investigative projects to cover important topics "in a changing America" – in this case growing older. – R


The Issues and Needs of ME/CFS Singles

Sadly there do not seem to be any good sites for singles with ME/CFS to meet. There is a Yahoo group, but no one I have talked to has ever had any luck with it. I think the format has something to do with that.

As to the disabled sites, in my experience the people on there are much much healthier and able to have real lives than I am. And people with other disabilities actually seem to have a more difficult time understanding that we cannot just "push through" things. Maybe that’s because they are healthy enough that they are able to do so, but it’s really frustrating finding that the people who should be more understanding are actually less so.

I agree that our situation is unique, and I would so love to have other people (friends and/or a dating relationship) around who get it. However, even that might be more than I could handle right now. Perhaps someone who would understand that I might (emphasis on might) manage to see him once every other week for an hour and just doing something very low key (and he would have to come to my place almost every time). – A


Good Site For Info About Sleep Problems

If you are sleeping a lot but still exhausted. Have you had a sleep test? I had one about six months ago. I thought it would be the sick office syndrome, the restless legs syndrome, pain from the FM awakening me. It turns out I have OSA, obstructive sleep apnea.

….If you do this make sure you have a certified specialist in sleep disorders. I knew I snored but had no idea that I was my breathing was intermittently stopping. This can cause significant harm to your body. I think my jaw dropped to the floor when it turned out I had this. (Even [so] I would have days that were better which made me think it was my FM. I tried several things which would help for a while and then lose it’s effect.)

This is a good site for information about OSA – – G


American Rx Drug Disposal Day Saturday, Nov 13

Communities across the the US will accept unused and unwanted prescription drugs anonymously at designated sites on Saturday, November 13. Visit and click on your state & county or zipcode to see a map marking collection site(s) nearest you.
– American Pharmacists Association

Note: As explained at, it is important not to dispose of drugs in household trash, down the drain, or by flushing. Huge amounts are getting into the water we drink and into the fish and other life in our waterways. If there’s no disposal site near you, consult your pharmacist.


DTOX Website, Online Radio for Those with Environmental Ilnnesses & Concerns

"DTOX Radio is the world’s first 24/7 online radio dedicated to people suffering from Environmental Illnesses and those struggling for recognition of environmental issues." It’s part of the Rob Network (, where you can listen to programming online, troll their online mall for products "showcased by and catering to the Environmental Illness community," see the news sites & blogs they follow, find interesting links, and much more. – W  


New Site Offers Practical Tools for Managing ME/CFS & Fibro

Q: Last week, ProHealth announced a new website offering practical tools for managing ME/CFS and fibromyalgia. What was that site again? – C

A: It is "Treating Chronic Fatigue & Fibromyalgia" (, with Dr. Charles Lapp’s advice on medical management and Dr. Bruce Campbell’s information on self help. They’ve been working as a highly-respected team on patient education programs for quite a few years.


Late & Chronic Lyme Symptom Overlap w CFS & FM (Not to Mention MS and RA)

I found this article in the ProHealth library – "Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia" [by Sam Donta, MD, published in 2002].  Still today, I believe, as the more recent reader comments state, "this article does a great job of explaining the pathology of Lyme disease," which is so little understood. "Best report available." – H 

Note: Dr. Sam Donta, MD, is a much published infectious disease specialist and Lyme expert based in Boston.


One Patient’s Experience with Anterior Hip Replacement Procedure

I’m home 73 hours in hospital for hip replacement. That is what it’s added up to from when I got there on Friday to when I got home yesterday.

The surgery went beautifully on the major anterior hip replacement operating table….what a contraption, but what is needed for this surgery. If one wants to see a photo, you can Google it and it’s online. [See for example the short video at]

I got a spinal and was talking to everyone and heard a lot at times. It was about 1.5 hrs and recovery about 2 hrs as one is numb for a longer time.

The first couple days were tough and then Monday a bolt of energy or whatever it was hit me and I was ready to go home. My doc had been telling me that from day 1; After anterior replacement most patients go home 1, 2 or 3 days later and OFTEN no rehab facility. I was so on the fence with that one as I live alone. My doc, a man of very few words but a magnificent surgeon, came in Monday at 7AM, said "Can you wiggle your toes?" and of course I could. He said "You are doing very well and can go home." I was in shock as I thought rehab for sure, but no no, I opted to go home and here I am and no one here and sleeping last night was just fine with 2-3 runs to bathroom. I will have PT a couple times a week and have a set of exercises to work on lying on the bed. All in all I’m happy and so relieved – J


Don’t Assume New Symptoms are "Just ME/CFS"

I’ve had CFS for 24 years. Last spring I was having abdominal pains – and after they didn’t go away for a long time, I told my doc. We tried several things and it got worse, so I got some ultrasounds, and found masses. I had surgery 2 weeks ago…. Who knows what the connection between CFS and cancer ultimately will turn out to be. One thing I am sure of: If I had trusted my primary care physician more, I would have talked to him earlier. Reluctance to reveal symptoms, learned by bitter experience, can cost you valuable months in the fight against cancer. – L


Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition 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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