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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Looking for Doc in Albany, OR area or as far as Portland, or South to Eugene

J

Justthemom3

Guest
I moved from AK to get better care, and haven't found a decent doctor after 3 years...any clues?
I appreciate the help! :confused:
 

camas

Senior Member
Messages
702
Location
Oregon
I'm in the market for a new doc in Portland, so will be following this thread with interest. Hope we both have some luck!
 
J

Justthemom3

Guest
Well, sorry that your in this wayward boat also, but its nice to have company!
 

camas

Senior Member
Messages
702
Location
Oregon
I've looked at the co-cure site before, but unfortunately I need an MD or DO for the purposes of my LTD. I've thought of trying Kemple, but it looks like he specialized in FM. Would be interested in hearing anyone's thoughts on him.
 
J

Justthemom3

Guest
thanks ggingues, that looks like a promising group to look in to.
Umm, camas, can you tell me what the acronym LTD stands for?
I imagine, since all of the co-cure "docs" are quite a drive from me, that I may not be able to have them as a regular or "primary", but might be able to get some help and direction anyway. Thanks for the responses!
 

camas

Senior Member
Messages
702
Location
Oregon
Umm, camas, can you tell me what the acronym LTD stands for?

Sorry about that. It stands for the Long Term Disability plan that I had through work.

Dr. Kemple is a great doctor. The problem in Oregon especially in the Portland area is that I don't think they like to give a CFS diagnosis. They are prone to diagnosing it as fibro. I think he would still be able to help you and has compassion for people with these conditions.

Thanks for the input, Robyn. I swear there are fewer CFS docs in Portland now than there were 20 years ago. I had a great one for about 10 years, but lost him to cancer. The doc I have now is well aware of the disease, but recently told me that all of his patients who are unable to heal, whether from an accident or disease, have a spiritual block. Guess I need to find a faith healer. :rolleyes:
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
thanks ggingues, that looks like a promising group to look in to.
Umm, camas, can you tell me what the acronym LTD stands for?
I imagine, since all of the co-cure "docs" are quite a drive from me, that I may not be able to have them as a regular or "primary", but might be able to get some help and direction anyway. Thanks for the responses!

Hope it helps! Might want to also try this website: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm and if the "FInd a Physcian..." link does not work try "contact us" my dr is on both of these websites and he prescribed me LDN.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Trying to get benefits from an LTD ERISA policy

Sorry to hijack this thread - I will respond briefly to the original question about doctors in Oregon in another message!

Sorry about that. It stands for the Long Term Disability plan that I had through work.
If you are trying to get benefits from an LTD policy that was provided by your employer then your LTD is probably covered by ERISA laws. If so, the first thing to do is get a lawyer. Even if you don't end up hiring the lawyer on contingency or hourly basis, at least set up an initial appointment to get an idea of what traps may be in your LTD policy.

LTD insurance policy claims under ERISA laws are complicated. Here's a link to give you an idea:

http://www.robberywithoutagun.com/faqs/why-doesnt-my-treating-physicians-opinion-matter.cfm

Another suggestion is to join the DISINISSUES yahoo group (see http://groups.yahoo.com/group/Disinissues/ ) Group members can ask questions and look through their files with tips. They discuss both social security and LTD issues.

I first filed for my long term disability benefits in late 2000, was promptly denied, and fought for 2 1/2 years. I eventually won in 2003 but it was an emotional, difficult and expensive fight. Be prepared for legal fees in the thousands of dollars (either on contingency, where the lawyer takes a portion of the benefits if you win, or hourly fees, if you can afford it and if you can find a lawyer to go that route).

My social security disability benefits (for non USA folks those are the government benefits) were approved on the first try. No denials! I tell other ME/CFS patients about that and they can hardly believe me because they think getting social security disability is hard. However, the consensus from every person I've talked with who has been through both systems is that it is a lot more difficult to get benefits from LTD policies covered by ERISA law.

The ERISA laws are stacked against disabled patients. There may be some situations where the first year or two is easier (any occupation vs. own occupation coverage) but that's the exception, not the rule. Also note that private LTD policies (e.g., you paid the premiums yourself) are generally not covered by ERISA so it will not be as difficult to get benefits under those policies.

To anyone reading this thread - feel free to send me email if you want to talk in more detail. There's more information that I don't want to provide here in the forums.

Marjorie
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Oregon doctors

I don't see any ME/CFS specialists. I do have a supportive primary care physician and a cardiologist. The are both in Portland. They are helpful for symptom treatment and such but are not specifically focused on ME/CFS. I was surprised, however, when my cardiologist mentioned the XMRV study during my appointment late last year! It was nice to know that he was keeping up with the research.

Anyway, I don't want to post their names on this forum but anyone who wants their names can send me a message and I'll respond (but please be patient if I'm a bit slow in my response).
 

camas

Senior Member
Messages
702
Location
Oregon
That's a great comment on the workings of ERISA and LTD. Maybe you should also post it in the Finances section where more people would have a chance to see it! I've managed to hang on to my LTD for 20 years despite their efforts to be rid of me. I have a good ERISA lawyer who has advised me well, especially on how to handle IMEs.

I was also recently approved for SSDI widow's benefits on the first try. I put a great deal of effort into my case (my boyfriend says I should have been lawyer :D), but now I'm wondering if they aren't just going a little easier on us here?

I may be PMing you for your doctor's name, if you don't mind. Thanks so much for responding!
 

Eucalypta

Guest
Messages
63
Location
lala-land
I can not believe you were not able to find physicians knowledgeable in CFS or post-viral infections in Oregon!

There are CFS 'specialists' in and around the Portland area. Most are Naturopaths though and use and integrative approach using Westen, Oriental, Naturopathy to treat CFS patients. IMO the best approach. As you probably know Oregon's Naturopaths have prescribing rights and are thus allowed to prescribe allopathic medicine. I can only give you these Naturopathic links because I am not interested in PCP's, Rheumatologists or other allopathic physician. I know they don't have the answer and are often bound by what insurance tells them, how and what to treat and how long to see a patient.

Besides these physicians there is a wealth of possibilities to get (cheap) treatment if you are willing to step of the beaten path. The Oregon College of Oriental Medicine has excellent clinics when you make an appointment there you often spend 3 hours on a first appointment. Payment is I believe $25 for an appointment. http://www.ocom.edu/

The National College of Natural Medicine (NCNM) has lots community clinics where treatment is also cheap and they are most knowledgeable about post-viral infections.http://www.ncnm.edu/ncnm-teaching-clinic.php

Than there is the IEP clinic for immune depressed illnesses. They treat in a community session people who have immune compromised illnesses such as HIV CFIDS/ME MS etc.

It's a part of the National College of Natural Medicine (NCNM) community clinics. This not a primary care situation but added treatment.
This is what their info says on the web page:
Immune Enhancement Program (IEP)
2015 SE Hawthorne, Portland
To make an appt.: (503) 233-2101
For the immune compromised. Treatments at IEP are intended to be an adjunct to standard medical care that is received elsewhere. IEP is a medical specialty clinic where adjunctive therapy for a limited group of disorders is offered; this includes: cancer, HIV infection, multiple sclerosis, diabetes, rheumatoid arthritis, hepatitis C, and pain syndromes.
http://www.ncnm.edu/ncnm-teaching-clinic/community-clinics.php

Here is another web site about the IEP program, much more info. They don't specifically mention post-viral or CFIDS/ME but our situation is the same as the HIV or Cancer patients. http://www.itmonline.org/iep/index.htm

I have a few CFIDS phycians listed but you need to call and interview them to see if it 'clicks' between you two. After all you need to feel comfortable with him or her for a long time.

dr. DAIVATI BHARADVAJ, N.D. She even has written a book about it CFIDS. I have not read it because I think it's too expensive. http://www.jaderiverpdx.com/practitioners/bharadvaj.php

Jeff Clark, N.D http://www.truehealthmedicine.com/ Jeff post every now and than on the CFSExperimental list that's how I know he's interested in CFS.

dr. Bob, ROBERT J. SKLOVSKY PHARM. D., N.D., PC in Milwaukee http://www.drbobnd.com/index.htm

dr. Lind in Bend http://bendchronicpainrelief.com/fibromyalgia-treatment-in-bend-or

These are just a few I collected when I moved from Europe to Portland and had to find a new dr. If I can find them, you certainly can as well ;-) it takes some time and hefty use of Google and the guts to interview a dr. and not blindly make an appointment and hope for the best.

The FFC clinic in Beaverton is closing its doors patients will be moving to my phycians' clinic, which is to open on July 12 in Lake Oswego. Besides seeing FFC patients 2 days of the week he sees private regular patients the other days. Contact me in private for more info and phone nr.

Naturopaths are trained to be primary care physicians and some do take insurance be sure to ask. Physicians who specialize in depth on CFS mostly take no insurance, not because they want to make loads of money but mostly because the want the insurance companies off their back telling them to not spend more than 15 min. with a patient and which test they are allowed to request.
I had great success with my insurance asking for reimbursement of out of network cost and got all my dr. vists and test reimbursed and my compounded medicine from a different medication insurer.
They do provide you with the right invoice and codes so you can submit it to your insurance.

Hope this helps.
 

camas

Senior Member
Messages
702
Location
Oregon
Eucalypta,

Thank you for your research. You might have missed the comment above where I said that I need a new MD or DO for purposes of my maintaining my long term disability benefits. In addition, my health insurance only covers MDs and DOs.

I've lived in Portland for over 20 years and have made the rounds. I've seen multiple LAcs, LMTs, DCs, and NDs. This included everything from kinesiology to homeopathy. I spent over $3,000 in a two month period at the Greenspan Clinic alone and, until his shocking death earlier this year, he was viewed as one of the best NDs in town.

Since my husband died I can no longer afford and have no one to run me around to multiple doctors, not that any of them were really of much help. Ironically the best alternative doctor I ever had was an MD who was also an herbalist, but I lost him to cancer in 2001.

I apologize to Justthemom3 for completely hijacking her thread. It certainly wasn't my intent.:Retro redface:
 

Eucalypta

Guest
Messages
63
Location
lala-land
Eucalypta,

Thank you for your research. You might have missed the comment above where I said that I need a new MD or DO for purposes of my maintaining my long term disability benefits. In addition, my health insurance only covers MDs and DOs.

Camas,

No, I did not miss the comment where you wrote that you were looking for an MD or DO.
The information I posted was not geared towards you because you were looking for a MD or DO.

I posted it as an answer to the original question from Justthemom3 and for anyone else who might read it and is looking for a physician up North.

I'm sorry you have such bad luck finding one.
Yes I know dr. Greenspan he was my 'back-up dr.' for when my physician was out of town. His dead was indeed shocking.
I worked with dr. Claire Careaga who worked at the Greenspan clinic and is an expert on detox issues. I still use her clay.

I do think that a multi disciplinary approach is the best way to create success in CFIDS/ME treatment, maybe not for everyone, but in my case it is. I refuse to see mulitple docters, that only leads to communication problems and errors, I'm lucky enough to have a dr. that has all these qualities.

Have you seen dr. Gerald Miller in Beaverton? He is an MD, I know many Fibromyalgia and Thyroid patients see him, he is knowledgeable because his wife suffers from FMS and he deals with bio-identical hormones. http://www.geraldwmiller.com/