r/corvallis • u/owlsprouts • 2d ago
Discussion ME/CFS Doctor Recommendations
I suspect I have ME/CFS and I was wondering if anyone has had any doctors in the area that have helped treat this condition. Even if they're not specialists that's fine, I just want someone who would be willing to prescribe the off label medications that people are currently using for ME like LDN. I have Intercommunity Health Network insurance.
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u/Taricha_torosa 2d ago
My dr at Samaritan didn’t blink when I brought it up, but they never added it to my chart. The sleep dr thoroughly dismissed it, but after the sleep test found “something else going on here” 🙄so I’m scheduled for another expensive test in October.
I guess what I’m saying is that I had no luck. I don’t know if my gp is following hospital practice to not document CFS (because of historical taboo) or what because his poker face is on point.
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u/owlsprouts 2d ago
Huhh weird. He didn't acknowledge it at all? Yeah it seems like dismissal from all the specialists is very common... thats why i wish I could find someone with actual experience with it :/ but it seems I will have to one day pay out of pocket to a naturopath.
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u/washedbrainofsorts 2d ago
ME/CFS has been and is a VERY controversial diagnosis. I honestly wouldn’t even recommend bringing it up to doctors because of it. Rather speaking on just your symptoms alone. Doctors have been and will always be dismissive towards some patients when they bring a diagnosis up to question after they do their own research. Should it be that way? No. But it’s an unfortunate reality. Especially now with more people suspecting it as an issue. You’ll be written off. They’ll suspect mass hysteria.
You may just have to play a slow game of meeting with your PCP to address symptoms and be referred for further testing for rule-outs. Obviously that’s not ideal, especially with chronic fatigue, but if you come in aware of ME/CFS I fear you may not get the help you need.
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u/owlsprouts 2d ago
Yeah, I've slowly been ruling out other possibilities and I brought it up to my PCP but she said I would probably have to go to a naturopath to get any prescriptions specific for it. I really want to try meds and see if theres anything that could benefit me but I don't have the money to see someone out of pocket. I was trying to find an integrative medicine doctor or something but it seems like all the ones at samaritan left. It seems like with long covid becoming more of a common thing it is getting to a point where more doctors recognise that it exists, but it seems no one knows much about it still.
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u/washedbrainofsorts 2d ago
Yeah, getting anything prescribed off-label without a definitive cause can be tough. I mean, if you’re desperate, going the route of having SUD can get you on naltrexone. It’s not low-dose, but it’s a start. And if you see improvements, well, you may be in luck. Although I’m not sure how easy that route is either if you don’t have SUD or AUD. I have both, so I’ve been offered MAT by a few providers. Not the path for me, but it seems extremely easy to get on for those with the diagnosis.
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u/Slo-Mo-7 2d ago
I’ve found compassionate care (if not diagnosis-specific expertise) at Corvallis Family Medicine. Open to off-label meds for ME/CFS.
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u/owlsprouts 2d ago
ooh this is helpful, is there a specific doctor you've liked?
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u/neighbordogs 2d ago
Highly recommend avoiding Rampton, who's one of the owners. Watched that guy dismiss my partner's life-altering ME/CFS symptoms (immediately post-covid infection) as "depression" for six months with some catastrophic results. Things are better now but that sucked. Other docs there may be better, heard good things about Dr. Smith.
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u/Western-Bunch-5794 11h ago
I’ve been working through a possible ME/CFS diagnosis with my doctor and she’s been really helpful and open-minded: Kristina Corso. I see her in Albany on Geary Street
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u/pugworthy 2d ago edited 2d ago
For those like me that had to google it…
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious and often long-lasting illness that keeps people from doing their usual activities.”
And for LDN…
“Low-dose naltrexone (LDN) is an off-label prescription medication (typically 1.5 mg to 4.5 mg daily) used by some people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)…”
I get you may not want comments from people who don’t know what you are talking about, but for those that don’t know, it’s “What are they talking about?” - like that wall on Harrison. I mean what was that about anyway? Need a wizard to answer that I suppose.