From Our Readers – Comments & Suggestions 01-20-10

New VIP Dx XMRV Test

I called VIP Dx labs about the new XMRV test [that Whittemore Peterson announced on Jan 14]. It is $450 for a virus culture. Not sure what this means. Based on what I have read here there are a number of tests (3?) that others have had. I asked the VIP staff person if this test is all that is needed and she said yes. – Q

According to VIP Dx, this is an improved culture method that eliminates need for additional testing. – A

I still think it’s best to wait until more research is done on XMRV before getting tested, but for those who want to get tested now it looks like you may only need one test that will cost less than the $650 they wanted for the two tests they originally offered. – F

I don’t think that WPI should be taking any money at this point in time for testing XMRV. It is still very much in the preliminary stages, and, until there is a standard test that has been approved by the FDA, this should be considered experimental and done under research conditions only. – T


Discovery of Unsuspected Sensory System – Link to Unexplained Pain?

Re: “Unique, separate sensory system discovered deep in skin”

I believe the skin hypothesis will bear fruit, though not necessarily in the receptors mentioned in the article. However, if the disease lives in the skin, that very simply, neatly explains the widespread pain and the so-called central pain sensitization hypothesis. I hope we can soon discard the lables “functional somatic” and “muscle pain”. – K

I think this is a major discovery. For me it has to deal with the so unknown neurovegetative [autonomic nervous] system that could possibly have this sensory endings .The sensations these patients still feel are completely typical for a failure of this system. – J

Curious to me is the SWEATING issue. [in this newly discovered sensory system, nerve endings are located on tiny blood vessels and sweat glands embedded in skin.] I’ve suffered with fibromyalgia (severely) for some fifteen yrs now yet it’s only within the past five/six that sweating has become a major nuisance/issue. Can/is sweating possibly a pain blocker? A pain increaser? A result of an increase in pain? (Which seems to be justified in my case.) – H


DVD Teaches Soothing Massage

If you have a family member dealing with cancer (or in my case, debilitating CFIDS), I want to recommend a DVD titled “Touch, Caring & Cancer.” It’s sponsored by the National Cancer Institute, and teaches the right way to do soothing massage, head to toes. Being able to help my husband relax when his symptoms were really bad was a way for me to feel like I was helping. You can watch trailers and a news clip at

Dr. William Collinge developed the program. I first read his book Recovering from Chronic Fatigue Syndrome more than 10 years ago. You can read it free online at his website – F


Helpful Forum Site for Post Traumatic Stress

This site has a very active PTSD forum, It has sections for carers and people with PTSD, and covers lots of relevant topics. – M


Sjogrens Affects Digestive Enzyme Secretion Too

Just as secretion of saliva & tears can decrease with Sjogren’s Syndrome [an autoimmune condition where white blood cells attack moisture-producing glands], similarly, digestive enzyme secretion can decrease. When that happens, the body gets less nutrition from the food consumed. Calories and nutrients are flushed down the toilet, which may hamper the body’s attempts at normal everyday tissue repair. Oral digestive enzymes, taken whenever you eat, can partially compensate for decreased digestive enzyme production.

…Testing for digestive enzyme deficiency would include a complete digestive stool analysis (CDSA). Undigested fat, protein & carbs in the stool suggest the need for digestive enzyme supplementation… Many Primary Care doctors are unfamiliar with that aspect of the disease. CDSA tests are more commonly ordered by Naturopaths, sometimes by Gastroenterologists. – S


Disability Lawyers List

I know this has been mentioned before, but I think it bears repeating. The Disinissues website is a good source of info and advice on disability and disability benefits. It also has a Good Lawyers List for the US and a link to a Canadian list. – G


Physicians Desk Reference Health Tools for Patients

From the company that does that PDR (Physicians Desk Reference) that all doctors use, comes a site for all of us to use – [Use] the top tabs to get info on:

– Prescriptions drugs and supplements,
– Diseases and conditions
– Clinical trials
– Surgery
– Interactive tools.

Hoping this may be of use to you. – T


Lyme Severity Differs Among Different Lyme Species

[A Harvard study helps explain why] “US” Lyme causes more inflammation: – V


What Has Helped My POTS  (Postural Orthostatic Tachycardia Syndrome)

Here’s what helped me over the years [for POTS, which involves a marked heart rate increase & blood pressure drop on rising from a prone position that causes dizziness/faintness.]

Celtic Grey Sea Salt from the Grain and Salt Society . It is NOT like the salt you buy in the stores. This one has a high mineral content and it works. All you need is a quarter teaspoon a day of it, and in many cases, it can make most of the symptoms disappear. I actually got rid of the severe lightheadedness with this for six months straight. I had to stop it because it is hard on the stomach, if you have acid reflux. Take it with food.

Salt your food. Salt is your friend with POTS. The government has decided to start cutting the salt content from most foods by twenty percent in the next few years. If you do not salt your food, you will get sicker and sicker as they lower the salt content. They obviously don’t care about those of us who NEED that salt.

Licorice works, but it has drawbacks. If you get licorice capsules, the dose is usually too high. If you use just the black candy strips, it works, but the sugar can be a problem and licorice strips your body of potassium, so you need more potassium. You can also get muscle cramps from it. [Note: the glycyrrhizin in black licorice can raise blood pressure by causing increased production of aldosterone, a hormone that regulates salt and water balance. Many who take licorice for its ability to soothe and heal the stomach’s mucous lining favor deglycerrizinated licorice, which does not affect the blood pressure.]

Cut out garlic (garlic lowers blood pressure) and nitrates from your diet. Both of these can cause POTS symptoms up to 48 hours after you have eaten them. Nitrates and garlic are hidden in many foods.

Stay hydrated. Stay away from a lot of things that will take the water out of you. Watermelon, lettuce, anything that acts like a diuretic. Drinking lots of water is really important. [For example, see video: “Effects of Hypohydration”]

Get a blood pressure cuff. Most people with POTS will read very low at home and read high at the doc’s office. A reading up to 156 at the doc’s office is pretty normal for us, even though they will tell you it’s too high. If you are that high that day, you will probably actually be feeling better. If you read low at home, and you feel sick, add a little salt to your water.

Take a lot of magnesium and vitamin D to help with sleep. – T


Bipolar Support Groups for Patients & Family Members

Some excellent online Bipolar Support Groups are on

The groups are:
• Bipolar Support Group
• Bipolar in the Family
• Bipolar Teens Support Group
• Bipolar Type II Support Group
• Bipolars with Fibromyalgia
– A

Dr. Elaine DeFreitas & ‘The First CFS Retrovirus’

A wonderful article by Cort Johnson on the work of Dr. Elaine DeFreitas (“The First Retrovirus in Chronic Fatigue Syndrome”) at: – F


Online ME/CFS & FM Dating

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” and “singles” and at least 3 groups… came up on the first page alone. – A
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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