HomeWhat's New on www.cfsnovel.comReader ReviewsMy StoryThe CharactersTake ActionCaroline's ME/CFS BlogExcerptsCFS News FeedThink You Have CFS?Sources of Antiviral TreatmentResearch LinksChronic Fatigue Syndrome MultimediaThe Money TrailCDC Roadblocks


Contact Caroline T. Anderson


Saturday, February 5, 2011

Understanding Antiviral Blood Test Results
I just found this very cool website about the subset of ME/CFS patients who can use antivirals to get better.
The area I was most impressed with is under the TESTING section where it talked about many doctors don't know that the active virus portion of the blood work is a useless number.
It's with that interpretation of the blood work that often causes the communication to down between doctor and a patient seeking antiviral treatment. The doctor thinks they know everything about how to interpret the blood tests and has no use for information to the contrary.  So show this to your doctor at your own risk. :)  (See my last post.) After all, what could you possibly know, right? But maybe say "But doctor, this information is from Stanford! Maybe you could call and talk to them." That might work, but I wouldn't hold my breath unless you go to the one of the 10 percent of doctors who really care.
Not too bitter am I?
I've just been mistreated a lot by doctors as I sought treatment/help and all those little hurts have added up. 
My really bitter statement is -- if you think the U.S. healthcare system is good, you've never been really sick.  
I hate to speak unkindly of a system respected by so many others, but there you have it.

IgM Antibodies.
This is not a very useful test. Although it is worth testing once, this result is rarely positive in patients with chronic viral infections. Typically IgM titers persist only for a few weeks after the primary infection. Just because the IgM is normal does not mean that you donít have an active infection; many clinicians are not aware of this fact.

7:38 pm

Saturday, January 15, 2011

Fight with My Doctor
I went to my rheumatologist yesterday and if we had been men with  a couple drinks in us, we probably would have come to blows. It was the first time I had seen her since I've started antivirals in May. That's when I flew to Florida to have the meds prescribed to me by a doctor there. http://www.4fibromyalgia.com/ 
When my rheumatologist heard what I had done, she erupted.
"You aren't a trained scientist so you can't understand scientific studies."
"Any research you've done is meaningless because you aren't qualified to understand the studies."
"You've jumped on a band wagon. If you're so smart, why are you here?"
"What you don't understand is that this isn't about journalism, it's about science. Journalist hurt people everyday."
So there you have it. I'm 95% my old self, but I must have gotten there by accident, since I'm not qualified to understand anything scientific. She never helped me. But I am better.
She told me she sees hundreds of patients and knows what they are going through. But her patients aren't better and I am....
I had gone to her because my treatment is two fold 1) methotrexate and 2) antivirals. MY GP won't give me the metholtrexate because he calls it the skull and crossbones drug. So to get my refill I had to go to the rheumatologist and endure her anger. I looked at the bill -- the office visit/temper tantrum cost me/my insurance company -- $204
Of course I will find another doctor. This one will be just another in a long line of doctors, who won't bother to delve into what is making their patients sick.
Just another in a long line of doctors not willing to open their mind to anything to help their patients. They just accept the party line -- that the problem is in our heads, or there is nothing that can be done for us.
Dr. Diamond, I may not be qualified, but I'm better! Are your patients better? There are more than 5,000 studies that show physical problems in people with CFS. I don't need to understand all the studies -- 5,000 studies speak for themselves.
Do you even bother to check your patients for viruses? If you found viruses in their blood work, would you ignore them because it's not the standard protocol? Just let them keep coming to you and do nothing to restore their life?
At least there are good doctors out there that do help. At least the whole world will know what's going on in the next two to five years.
Then Dr. Diamond, you can tell your patients how well you understand science, charge them $204 and as an added bonus, maybe make them well.
12:07 am

2011.02.01 | 2011.01.01

Link to web log's RSS file

Caroline T. Anderson

Help your family and friends understand what you're going through. Buy Chronic Fatigue Syndrome: A Novel now.