I have finally settled on an HMO doctor who seems to be neutral. He is in no way what I would wish for in a doctor but the closest one so far.

I played dumb and called and asked if I could take the xmrv test. I knew it wasn’t available but I wanted to find out how informed he is as I am still getting to know him and to keep him (and the rheumatologist) on their toes. I don’t see my doctor very often, probably even less than people who don’t have FM/CFS, but I want them to know that I still do my homework and if they see that I do, maybe that will challenge them to do theirs.

The nurses I talked to who were to forward my message had never heard of xmrv before and most likely my doctor didn’t either. It took about a week to get and answer and the reply was: Dr. ... has talked to couple of other doctors and this test is only done for research purposes and it is not available here (Blue shield). I think this is a pretty neutral answer. I am curious what kind of replies you got from your doctors if and when you mention it.

I have my test from VIP lab and have to get the blood drawn on Monday or Thursday.
He told me he had never heard of it.

This is what the nurse said but when I mentioned something about cancer he said bring in some info. So I am going in today and take some papers exactly what have not decided.
If he doesnt do it I will go to some other doc and keep on trying.

I will let you know tonight what I find out.

Take care
hensue

For the blood test for xmrv at VIP Lab. It was getting to late in the day for fedex to pick up so we decided to do it Monday.

Gave my doc the info I had printed out he has not had to read them yet.
At least Monday I will get the blood drawn and sent back.
It has to be done on Monday and Thursday only.
Take care
hensue

interesting if doctors like: Dr. David Allan, Dr. Hans Gruen, Dr. Green who have and are affiliated with the Longevity Clinic in WLA. I've seen both Dr. Alan who has now gone on his own, and Dr. Gruen. They are very knowledgable and both integrative docs.

I also wonder this about my doctor, Jennifer Sudarsky, who is also integrative. She knew about LDN which I'm doing now. I'm not seeing her for a while or I would mention that xmrv. The virus I don't believe applies to me. But who knows. jam

I really appreciate my doctor. He has worked hard to treat my illness for 14 yrs. However, he does not believe everything that comes through the internet and he doesn't appreciate my coming to this board because of that. When I told him about xmrv and that I learned about it here, he looked at me and said, "you need to watch that". So, that tells me he knows nothing about this new development and is skeptical about the information I relayed to him.

I fully expect my doctor will be willing to test me when the information and test are available to him. For now, he remains in the dark.

How can we speed up the process with our doctors? I believe they are doing the best they can. But, how can we move things along? Any ideas?

Take care,

Fay

hensue, that is so exciting you are getting the test done anyway. I will definitely check back to see what the results are.

jaminhealth, you are always ahead of me with trying things out. I would like to know how you do on LDN. I wasn’t aware it was available to the public. Will write you soon and ask more about it.

FibroFay, I think that’s how most doctors feel about Internet info. What we need to do is mention specific articles that appeared in reputable newspapers and networks like NYTimes or ABCnews with Dr Donnica Moore. How can we speed up the process with our doctors? I am thinking about that. I guess gently, in subtle ways.

I am getting the impression that doctors are interested in xmrv once they actually do get to the information. It’s just a matter of time. I kind of feel good about the fact that a simple question made this doctor talk to other doctors and learn something new.

All most exciting, right?

Wouldn't the best plan be to just give the Science article to your doctors?

No one can refute what Science publishes.

skeptik2

For and MD or other medical I provider I would take in the copy of the study that was published in Science. In fact, when I am up to it I am going to see what medical journals our local technical institute has in its library. I will track down the journal one way or the other. Medical providers cannot argue with something out of an outstanding journal. A copy of the New York times article would be useful as well.

XMRV can be learned about without ever going online afterall.

I don't have a printer, but those are good ideas. Thanks.

Fay

I hope he does we will see, I think people are scared to ask the docs. They should not be
Believe me I am sure I will have to pay his lab.

We pay our doctors they are doing a service, just like everyone else.

My doctor thinks I am crazy anyway! maybe I am

Hensue

That to me was the best paper to give him. Actually he is a very smart man and does not take anything at face value. I was suprised he actually was going to let me go to the lab.
I secretly think he must have looked it up. I could be wrong.

He took everything the lab papers and made copies of it.

Then again I over think, as you can tell I am so add and my mind goes extremely fast.
So fast I forget to put words and letters and lot of the time you do not understand what I am saying.

I cannot take the add meds so, oh well go with me or critique what I say ok.
Hensue

I was kind of surprised by my current doc's response, but
it does make some sense. He said these were tests on small groups--- and extensive, repeated tests have no been performed.

I still have hope this could lead to a treatment.

I think his basic message was, "don't worry about it until we know more..."
If anything, use it to lobby for more research.

And he was very curious how many healthy people would turn up positive
for xmrv in further testing of larger groups.


PS Heard from a few patient who spoke to their docs and they said to wait for a nation wide, standardized test. I can't confirm this but there was some concern as to whether whatever test(s) are available now are exactly what was used in the study, etc....danger of false positives or negatives.





[This Message was Edited on 11/06/2009]

Fay,

my new pain mngmt. doctor said and reacted the same way your Dr. did. In fact she was almost

rude to the point of cruel about the fact that I come on this board and actually get information

here, much less might actually believe anything I read here.

Who else but one who feels that way we do will actually pull up pertinent information regarding

this DD? Who else but one who can't get out of bed without narcotics will search and search

every viable website for information on a cure. We are intelligent human beings who used to

have real lives, real careers, who still can read, think for our selves (even if we can't

remember all the time:) ). We are not some nut case with invisible pain and too much time on our hands.

I am soo tired of being treated less than scum because I have pain they can't see. I know there job is to heal, and thus far we are un-healable so the want to get rid of us so we don't mar their success rate. I wouldn't even care if I could just go to a hospice center where their sole purpose is to make you comfortable til you pass on. I'm in for that, at least I would be treated with respect and compassion.

Sorry for the sob, just frustrated.
Nah.stacey

Frustration:
The first time I went to the specialist where I was diagnosed I was treated pretty bad and had a crying fit as a result, which was documented among other crap that made me look insane if not stupid. It took me a long time to re-establish my reputation in the medical files.
It is sick that I have to earn my doctors trust but that’s how it works. The more confident, relaxed and calm you are the more you gain credibility in their eyes. Now I make sure no one writes crap about me and if they do I leave them immediately and look for another doctor.

Dealing with doctors:
Yep, doctors don’t like any of these boards.
I usually use all opportunities to drop information here and there in conversation whenever it feels right, for an example if my doctor asks me how have you been doing. I say something like, I discovered that pro-biotics solved my nausea symptom etc... When he asks how I found out, I simply say, “From my FM support group (as I consider this board my support group) and the GI you referred me to even suggested it himself and was glad I had found out about it 3 months prior, while waiting for his appointment.” Hint hint...

In my experience doctors respond best to indirect information where they are not put on the spot. Had I given him something to read he would have been offended. The Science article is a good one to give but my doctor already learned about xmrv when I called and asked, so I can’t give it to him.

I hear ya.

((((((((HUGS))))))))

Fay

I have been thinking of this lately.

The docs can't do anything for us. So we have to go out and try to figure it out on our own, out of desperation.

But then when we discover things, we go back and talk to our docs. We also go from doctor to doctor saying, "I'm sick, please help."

Now they think we really are neurotic. Who obsesses over their health except someone who is neurotic? So we start showing the signs of a hypochondriac, spending hours on the Internet looking up information, bringing up some ridiculous (in their eyes) possible treatment.

So our activities actually reinforce the docs beliefs about us.

Tina

[This Message was Edited on 11/07/2009]

I had to track down this thread to post this. It got stale. But I just went in for lab work today.

I saw my doc sitting at a computer. I said, "Dr. Miller, XMRV, heard of it?"

She said, "Yep, with Chronic Fatigue Syndrome. But there isn't a treatment yet." (She didn't even turn around and look at me. That is ok, I didn't have an appointment to see her.)

I said, "Yeah, I know. I just wanted to know if you knew about it."

She then looked at me and said, "We can do antiviral herbs."

I said, "Yeah, but I don't know which ones."

She said, "We will talk about it when you come in after the lab work is done."

So there you are. When I do see her, I plan to ask her where she came to know of it. As some of you know, I am working to get more media coverage. And I think the best thing for us is for doctors to get the message. So it needs to be in whatever they read.

Tina

I’m so glad you tracked down this thread and posted. Thank you for sharing your experience. Every little bit of info helps and I’m grateful that we have this board. Sounds like doctors are catching on and yes media coverage is so needed. Makes me happy to hear someone is looking for ways of doing exactly that. It will be interesting to see what more we will find out over time.







[This Message was Edited on 11/19/2009]

Let us know what herbs your doctor suggests. I have an idea of which ones might work but it would be interesting to hear a doctor's opinion on which ones to try.

Will do.

Tina

I was the first to tell mine about it.

She seemed as interested as I was about it (she's not a CFS specialist but I've been going to her for YEARS, even before I came down with M.E.). She asked if they were developing treatments yet, or if they were even doing trials yet and I told her they were starting by seeing if current HIV drugs can help, and were trying to reproduce the studies as well as put together groups of people to enroll once the first trials were ready to begin. She even mentioned that this makes sense why people stay sick because a virus like this could damage the immune system where it coudln't fight anything else off...

So glad I have her.

When I first read the N.Y. Times article. They wrote back saying more study needed to be done and many reasons why. Non of which I can remember can you relate? I think so. At any rate I have also gotten e-mails saying that Stanford has hired a Doctor who is a specialist in Viruses only and there will be a trial (not saying when) would I be interested and of course I said yes.

Hi Determined One!

This is a great post! Thank you!

I have seen both of my doctors since the article came out. My Rheumy said it'll be very helpful with both diagnosing and treatment when the repeated studies verify the findings.

I saw a Neurologist today. (My Rheumy wanted to rule out MS and Diabetic Neuropothy.) He said that he doesn't have much faith because of places like WMI find "what they want to find". He went on to say that if Johns Hopkins or the like come to the same conclusions then it would be "incredible".

I was very pleased that they both knew about it and had thought it through.
Wendysj

her response to me sending her material to read was the research is ongoing and there is no treatment protocol yet.

I think once a doctor has made a commitment to a course of treatment for their patients, be it medicines they prescribe or other therapies, it is difficult for them to say, hey maybe I was going down a rabbit's hole blindly, maybe these very powerful/expensive meds I've prescribed dont work and there IS something on the horizon-it takes courage to change, whether you're a doctor or a patient.

He was involved in research during the begining of aids and his comment that it is either going to be the greatest studay and he can forsee that the same treatment given to hiv patients would be appropriate for thei.

He also said that given further study it could end up being just another theory but I wish you all the best.

regards
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