End of the Line

[Misfit Toy]

jimells, I know those 3 things you are talking about ...snow, mud and flies...I endured them for years up there in NH. That's so funny. My family would laugh at that one!!

 

[*GG*]

GG, they sent me a list of three doctors from eastern Mass, with a rather cryptic message. They asked me not to let the doctors know that they are on the referral list. I don't understand what this is about. Does their request imply that I should not ask about these doctors on Phoenix Rising? A trip to Boston is 800 miles both ways, which I'm not really well enough to do (but I know I have to, somehow). I need to know something about any doctor that I am going to see, especially what treatments they might consider to be appropriate for me.

I've already been to one "integrative" doctor who claims to treat ME/CFS. After acupuncture and Chinese herbs failed to do the job, he kicked me loose with some ridiculous claim that he could "sense" I was being exposed to "something" that was making me sick, probably either "radon" or my birds. I don't have any respiratory symptoms, but that is irrelevant; I'm supposed to "fix" whatever environmental exposure is causing my illness, then I can call him again. As if that is going to happen...

Interesting, not sure why they do this, but I would imagine there is a reason.

GG

PS I think you can ask about the Dr on this website, I think it is for other reasons. People just might want to respond in private, because some Drs practice modalities that are not exactly mainstream, like detox.

 

[beaker]

GG, they sent me a list of three doctors from eastern Mass, with a rather cryptic message. They asked me not to let the doctors know that they are on the referral list. I don't understand what this is about. Does their request imply that I should not ask about these doctors on Phoenix Rising?

I would take a guess and say that the dr.'s don't want to be on a referral list for a couple reasons :
Keep their practice from being overrun with me/cfs patients. ( we do take more time-- they still need to make a living and they may have partners or practice owner that wants a patient quota kind of thing)
They might also not wish to get more involved in the inevitable politics of this illness.
I think we could all come up with a few more reasons.... but my brain gave out for now ;-)

I don't see why you can't ask about them on this forum. I would start a different thread though, and not say where you got the names in order to respect the Mass. Group wishes. Going all that way, it seems like a good idea to get some feedback from someone who has seen them.

Personally, I have seen several of the big name Cfids docs and they don't have much to offer -- unless you want to be a guinea pig and/or need a very good write up for disability, or are particularly interested in what particular theory they have latched on to and want to go in that direction of treatment that your local doc won't give you . If you happen to live near one, that's another story....... mostly.... depends on the dr. and the $$$$$.
The best doc,imho, is one that is open to this illness, open to trying new things, open to reading and willing to do a little extra investigation on treatments. If there were something that was really helping folks a lot, I think we would all hear about it, kwim? Of course, going to a non "cfids specialty " doc means that you will need to do some homework.
Take information,medical journal papers and such to your dr. But I think most of us on hear are pretty much already doing that or have an advocate that is helping.
Glad to hear you at least have a local dr. that is willing to accept this illness ( I never get over the fact that some don't "believe" --- like this illness is some kind of myth. ) and willing at least to make referrals. Maybe you can start feeding her some papers ! ;-) Not overload. Just one here and there.

 

[*GG*]

That's funny, "some homework", I think that's putting it mildly!

GG

PS I have considered going to that place, but it is about a 2 hour drive for me, my Dr is only 1 hour, outside of Boston, unfortunately for most, he does not take Insurance, like many others in the area who are knowledgeable with our illness!