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From Our Readers - Comments & Suggestions 03-10-10

  [ 69 votes ]   [ 2 Comments ] • March 10, 2010

Bone Marrow as Retrovirus Hiding Place

Re: “Surprise discovery that HIV retrovirus hides in bone marrow offers new hope for eradication.”

This is an interesting finding. I have to wonder if the XMRV retrovirus might hide out in the bone marrow too? - P


Online Social Connections & Comfort

Some time ago the Toronto Star had a column that caught my attention. Here's an excerpt: “It was C.S. Lewis who said the reason we read is to know we are not alone... in shared story is connection, in connection is comfort.” I thought how true this is for our cyberspace connections on the message boards! - J


Likely Reason Testing Can Miss Lyme Disease

A doctor who treats Lyme in Tampa, Florida (Michael Cichon, MD, Assistant Clinical Professor at the University of South Florida), thinks Lyme is underreported because blood testing doesn’t cover the range of possibilities. He’s quoted in a news brief (“Lyme Disease: The Next Pandemic?”)  saying "The CDC recognizes three strains right now, but there might be 300 strains." - G


Test Kit for Genes Associated with Celiac Disease

Searching online, my husband found this saliva test to see if you have the ‘genetic sequences’ they say are linked to Celiac disease. The test is kind of pricey, but I am a Celiac patient, and my mother certainly had undiagnosed Celiac problems & died too young, so it’s very important to me to know if my young daughter could be at risk. Thought I would share. - P


New Jersey Unique in Its Good Supply of ME/CFS/FM Doctors

Alan Gurwitt, president of the Massachusetts CFIDS/ME & FM Association, is calling on members to pool their information regarding health professionals they’ve found to be helpful – or not helpful. Their state’s “good doctors” list is shrinking, but he holds up New Jersey as a model for expansion. To quote him:

“An exception to the rule is New Jersey. They do not have the shortage of knowledgeable physicians for a number of reasons. Their leaders have been able to get to know prominent people in their state including many physicians in key positions. They have undertaken a number of educational efforts. Perhaps particularly effective has been the work of one retired physician who follows up on recommendations coming from their membership. This physician personally calls each doctor recommended, confirms their licensure, area of medical interest and willingness to see CFS and/or FM patients. We will be considering their methods as we renew our efforts to add to our list. Your recommendations will be vital to that effort.” - Y


Filing Grievances/Appeals Re: Optional Medicare Plans

[Here's a helpful] article from the Centers for Medicare & Medicaid Services:
“Medicare Advantage Plans and Medicare Cost Plans: How to File a Complaint (Grievance or Appeal)” (this is a safe site) - T


Tips for Typing Despite a Carpal Tunnel Problem

Just wanted to let people know that, if you limit your time on the computer because of carpal tunnel pain, I accidentally found out something that worked for me… I had purchased a computer, but began noticing that if I wrote for too long, I was getting awful pain in my wrists, even an electric burning sensation in my palms. I can no longer sit at a desk... because my ankles swell. So I... bought a corner desk and a recliner. Now, I sit with the monitor in front and slightly to the right of me, recliner foot brought up under or near the corner desk. And I began typing with the keyboard in my lap. Within a very short time, I suddenly realized I was no longer having the pain in my wrists. ALL symptoms went away! Now, I can be on the computer for long periods of time, with no problems.

I realized that it was because, sitting at a desk and typing, your wrists are arched a bit. By typing in my lap, it changes the angle of my wrists, so that the 'carpal tunnel' no longer gets compressed. So, as we all need all the help we can get, I wanted to post this message.


Houses of Worship Offering Job-Finding "Career Networks"

This article posted on the ProHealth Spirituality Message Board gave me a good idea because I have been a college career counselor and a friend at my church works for an employment agency. We know there are lots of people in our congregation struggling to find work, so we think we might get something similar started. Members of the congregation can also contribute suits, etc. as needed for interviews. Hope this helps someone else. - K


Survey Seeks Cancer Patients Now in Treatment

You are [invited] to be involved in an online research study regarding psychosocial treatment interventions and perceived quality of life in cancer patients. You are invited to participate in this research study if you are 18 years of age or older, and are currently involved in a cancer treatment program. Participation in the study will take approximately 30 minutes. There are no anticipated risks beyond those encountered in daily living by completing the questionnaire. I would like to assure you that this study has been reviewed and received ethics clearance by Manindri Dissanayake ( and through the Internal Review Board at The Chicago School of Professional Psychology….

You may… contact Patricia Fank at to have a link [to the survey] emailed to you directly or to receive a hard copy of the survey in regular print or large print. Thank you in advance for your interest in this project. - Sincerely, Patricia Fank


Discovery May Encourage Natural Childbirth for the Pain-Sensitive

Re: article, "Local Injection Stops Pain Signals without Affecting Ability to Move"

This surprise finding at Boston Children's Hospital shows promise for millions of women who have low tolerance levels for pain and want to have natural child births. It will be interesting to follow the progress of this new find. It may become a viable choice for midwives in making birth a gentle, natural experience. - D


Might MS, Like Lyme, Be Associated Somehow with Spirochetes?

The Canadian Lyme Disease Foundation website features an article that compares two color-coded US maps. ( One depicts county-by-county frequency of multiple sclerosis patient deaths, and the other depicts deaths of people with arthropod-borne diseases. They are AMAZINGLY alike. - N


Bladder Pain Clinical Trials

The Interstitial Cystitis Association website recently updated its Clinical Trials page. If you have bladder pain or sensitivity, you can look over a linked list of more than 20 trials to see if anything interests you, or sign up on a “ResearchMatch” list to be considered for surveys, projects & experiments that need volunteers. - H

Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not intended to substitute for the advice of a medical profession. Nor is it 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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Article Comments Post a Comment

alternate Lyme testing
Posted by: Sandy10m
Mar 10, 2010
My very clever CFS doctor doesn't use the Lyme blood test (because it is so unreliable for people with long-term Lyme), but he does use two other blood tests that can be done at a local lab. They are the C4D fragment panel and CD57 panel. Evidently these markers are elevated in people with Lyme (and associated co-infections), even if it's a long-term disease. Don't use Quest Labs, though, since they don't do the ideal testing method. Use Labcorp for the testing. Good luck! SM
Reply Reply

Megan's statistical info in canlyme web site
Posted by: bettyg
Mar 10, 2010
I hope all who have LYME, FMS, CFS, MS, ALS, take the time to look at Megan's outstanding statistics she compiled when ONLY 17 YRS. OLD! Aren't you glad you spoke to congress about what she discovered? I am! If she can do this amount of work and accuracy, think 10-30 yrs. down the road of what SHE WILL DEVELOP/INVENT for our lives with the above diseases. BettyG, Iowa lyme disease activist
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