Discussion in 'Fibromyalgia Main Forum' started by deliarose, Oct 14, 2008.
Can you advise me which of the Redlabs panels most CFS docs order?
My doc ordered the RNAA (RNase L Activity), RNase L Protein Fragment (RNAP), and Elastase.
I did the bloodwork at his office so I don't know the particular codes for Redlabs.
My Dr. usually orders:
Complete CFS Panel (RNASE + Ratio, Elastase, NK cell assay)
And when I first saw him he also ordered the MEILSA test (which checks your immune sensitivity to metals such as mercury, nickel, sivler, etc...)
Some docs also order the Immunobilan test and LPS test, but my dr seems mainly focused on viruses and those tests are checking for intestinal bacteria. Might be worth having though because there is a treatment for that problem. The other stuff is interesting, but hard to know what it means..
Hi I was interested to know what doctor you are seeing, now that you're not seeing Lerner. I've not had much success with Lerner.
I live right outside Ann Arbor and feel my current doc has taken me about as far as he can. You seem to be up on the latest research and treatments and wondered if your doc is willing to try different modalities.
Thanks so much
dr. lerner has an 80% success rate.
I will try to respond to your request for my input. I know I'm in the minority on this board in terms of enthusiasm for Dr. Lerner.
I have posted about my experiences with Lerner on prior posts so you can check some of them too.
First you should know that, I was treated by Dr. Lerner twice (10 years apart) and I did not follow through with his protocol either time. The first time was 10 years ago when I first became very ill over ten years ago. He was the first doctor to diagnose me with CFS. His testing revealed that I had CMV and a couple of other herpes viruses. He seemed to lose interest in me when I didn't fit his t waves profile. He prescribed the equivalent of Valcyete and Valtrex at the time, but said it was risky because it would further compromise my already compromised immune system. I was already feeling like I was dying and didn't want to take the risk.
I have sought other treatments over the years and have improved maybe 65%. I decided to try him again last year. What I found was that his protocol and procedures basically had not changed since I first saw him. I was uncomfortable with the fact that he said I tested positive for h pylori and treated me for it, but never retested me to see if the treatment had been successful, just moved on to valcyte. I took it for about 6 weeks but it resurrected so many of my early symptoms, physically and mentally that I found it intolerable. I asked him to reduce the dosage but he wouldn't. I decided the possible improvement was not worth the risk of relapsing back to my early state of illness. I am 62 and don't want to spend possibly months or years feeling that ill again.
Additonally, on both occasions I found his bed side manner demeaning and dismissiv. I find him to be narcissistic and very autocratic-- does not like to be questioned. I had one very bad visit with him when he became quite angry with me and offensive. I take issue with his overly optimistic statements, such as "I can make you well, (he told me this almost in the same exact words on both occasions), I feel he is misleading his patients. And finally, his focus is entirely antiviral, he has no interest or use for other treatment modalities.
My impression from my experience is that he is a researcher and I was a subject of research==it felt depersonalizing to me.
Well, I know this sounds very negative but you'll read lots of posts from those who think he is wonderful, and I truly hope others will be healed by him. I think he has a piece of the puzzle for some CFS patients, but just a piece and not for everyone.
This may bring down the wrath of his current patients on my head, but I am just responding to your request.
I'm going to do a separate post to you, I don't want to hijack this very interesting thread.
Separate names with a comma.