ME/CFS and Fibromyalgia
Message Board

Internal Medicine with lots of fibro knowledge: Dr. Neil Erickson (816) 941-9030

Infectious Disease dr: Dr. Joseph Brewer; (816) 531-1550 (hard to get in to see, not sure if he is taking new patients, (according to my disability lawyer) would probably need referral)

Pain management: Dt. Steven Simon (913) 599-2440

First, doxygirl, thank you so much for starting this thread. It is sooooooo needed.

My CFIDS doctor is Phillip Taylor in Thousand Oaks, CA. His phone is (805) 497-3839. He is semi-retired, office is only open Tues, Weds & Thurs, and it takes 4 months or so to get an appointment. He does hair analysis and food allergy testing.

He's the one who qualified me for SSDI.

He is extremely knowledgable about nutrition and how the body works on a cellular level, prefers to work with supplements whenever possible.

I don't have FM pain, so don't know how he is with that.

He is very open-minded and stays up on current research and is willing to listen to things I've researched.

He had me do an impedance cardiography exam which showed some heart abnormalities, as outlined in Dr. Peckerman's article. He told me that 12 out of his 14 CFIDS patients had this problem.

He takes Medicare (but is not on my Medicare HMO list), and he has kept his prices reasonable.

I am just afraid he is going to fully retire one of these days . . .

Mary
[This Message was Edited on 08/22/2007]

I had been seeing Dachman--a rheum and pain specialist in Schuamburg, but the minute my ins changed and started covering less, his compassion went right out the window. I couldnt afford the rate changes so i stopped going. that was many months ago.

I need someone in the burbs....Arlington Hts, Palatine, Buffalo Grove, Schaumburg, Barrington, Wheeling...or surrounding areas. I can't sit long enough to drive to Chicago. Anyone have any recommendations?
[This Message was Edited on 08/22/2007]

I've got the greatest pain specialest . Arthur Ford of Kingman Arizona . When I first went to see him in 2000 he had to refuse to treat me because at the time I was on a heart transplant list and he felt giveing me the right treatments would endanger my life . But he kept my files for 4 years until I'd improved to the point I was removed from the transplant list in 2004 . Then he began me on monthly epidural shots in my low back .It took over a year for them to help but they gave me my life back . He's the most careing doctor I've been to in over 12 year.

Need a Dr. near Taylor, Texas

great thread!

I have a fairly good doc, but he is nervous about upping the dosage on narcotics and not really willing to work with you. I live near Farmington, but I could travel to Albuquerque or Santa Fe.

Sher48

I used to live in Raleigh, NC and I saw a really good Internal Medicine Doc. He was the one who diagnosed me with FM. His name, address, and phone number are: Dr. Jonathan Green 1010 High House Road Cary, NC 27513 919-481-1515

I have since moved back home to Mississippi and now see a very good family doctor who was refered to me by my cousin who has Lupus and FM. He really knows his stuff about FM and CFS his name,address and phone number are: Dr. Stephen Shirley 400 Doctors Way New Albany, MS 38652 662-534-5036

Hope this helps. daffysmom

Dr. Shereen Hashmi - Rheumatology

bumping for more good doctors!!!!

Dr. Robert W. Jackson Kirksville, Missouri Specialty: Rheumatology (Arthritis) Webpage: acoi.org/05sunjackson.pdf (external) Phone Number: 660-627-5175

Hedrick Medical Center 100 Central St. Chillicothe, MO 64601 660-646-5444

http://www.healthgrades.com/consumer/index.cfm?fuseaction=modnw&modtype=PRC&modact=report_enh&hgid=HGPY61E19724875647053&phys_free_id=992&TV_LID=LNK_Affiliated_PhysProfile

Queston for you

What type of doc is Dr. Cyrus Vosough in Livingston? I can't seem to find a listing for him.

And just to make a correction-

Dr. Sanders Davis 95 Mt Kemble Morristown NJ

He's specializes in fibro; part of a group known as Associates in Rehabilitation Medicine. I'm not sure who he has that is going to take over his practice when he retires - I certainly hope he better start "grooming" a new doc darn soon!

I have an Exellent Fibro Doctor, he does take some insurances so you will either have to call his office and check with them or call your insurance company and see what they cover. I currently have Aetna and he does not take that one BUT he will bill them and my insurance policy pays 100% of out of network doctors AFTER the first $500. so yes I know that that is a lot of out of pocket for us he is VERY worth it.

Fibromyalgia Treatment and Learning Center. Dr Michael J. Powell, D.O. 650 University Ave, Ste 200 Sacramento, CA 95825 (916) 922-8400

He specializes in FMS/CFS Diplomate, American Board of Internal Medicine Diplomate, Americian Board of Rheumatology Fellowship, Stanford Division of Immmunology and Rheumatology.

He BELIEVES you with your off the wall symptoms and cares very much. Is very patient with you.

I also know of a Family Practice doctor who really listens and understands FMS. Their group takes almost all insurances. they are:

Seirra Rose Family Physicians Medical Group. 8735 Sierra College Blvd, ste 100 Roseville, Ca 95661 (916) 786-5908

I highly reccomend both these groups of doctors if your in the Sacramento area or can get to it easily give them a call and check them out. They will work wonders for you.

I was so bad with uncontrolled FMS/CFS back in march that i was hospitalized twice and was on major pain meds but now I only take Ultram ER (1 daily) and advil, along with my vit supplements and a hot sauna daily. and have just been released to go back to work part time. (thats a scary one )

If you have any questions pleas feel free to contact me.

gentle hugs Fabricaholic

Most of you making recommendations are listing doctors helping you with pain. It would probably be helpful to those looking for a doctor to specify whether this doctor is treating your overall Chronic Fatigue Syndrome or primarily Fibromyalgia (pain symptoms).

Since February I have been seeing a great doctor for CFS. He is Dr. Dale Guyer in Indianapolis, IN. Someone said he is arrogant and this is so far from the truth. He is very personable, spends a lot of time with you. It is true he doesn't take insurance and requires money up front, but they give you info so that you can bill your insurance. Dr. Guyer closely monitors my condition and is very sensitive to the fact that my body cannot handle a lot of hormonal changes and cannot handle high dosages of antiviral medication. The only problem I have been having with Dr. Guyer is getting my treatment record so that I can submit records to disability. Dr. Guyer is great clinically, but the office management at present is poor. Apparently, however, he has relied heavily on a nurse for records management and the entire time I have seen him he has had difficulty getting a nurse. He hires one and they last a week and they are gone.

I've yet to meet or hear of any actual patients of Dr. Guyer who haven't been very satisfied with the clinical aspects of his care. I know more than six who are very satisfied.

His approach certainly is "unorthodox," but considering how little help the many "orthodox" doctors I've seen for my CFS have given me (and how much frustration other CFS sufferers on this board express about their "orthodox" doctors), that seems to me a good thing. (Obviously not every other doctor in Indianapolis approves of him, but I wouldn't drive the four hours from Chicago to Indianapolis to consult with any of them.)

As a patient, I've never found Dr. Guyer to be arrogant at all. He is by far the most open-minded doctor I've ever had in terms of listening to me talk about my illness and ideas, and in working with me to address things in ways in which I feel comfortable.

I don't personally know any fibro patients who see Dr. Guyer, and so I'm not sure what they think of him. He's not terribly drug-oriented, and so those patients who want painkillers only may be better off seeing someone else.

All in all, he is a wonderful doctor. I don't like to see people who have only met him (rather than who actually have consulted with him) pass judgment on him.

I have used in the past several other excellent doctors (including "conventional" ones) who don't "take insurance." These all are doctors who are successful enough that they do not need to allow themselves to be controlled by an HMO. I submit the bills to my insurance myself and obtain the same reimbursement that I would if the doctor's office submitted it. Personally, I would prefer to do it this way since I retain more control over the process.

It is true that his office does not accept Medicare, which obviously would be a problem for some people.

He also is fairly expensive, charging $350 for a follow-up. However, considering that this is for a full half-hour of his time and that he often does research on individual patients' problems outside of the scheduled appointment, I certainly do not think he is overcharging.

I do agree that problems can arise as a result of the administrative aspects of his office, but considering how poor most doctors are in terms of treating CFS that is the least of my concerns.

P.S. I don't think Dr. Guyer would be a good doctor to use to get disability. Again, that kind of administrative work is not his forte.


[This Message was Edited on 09/24/2007]

This is what my grandmother's cousin told his niece after she was diagnosed with fibroitis: 'God gave us this pain so that we could remember every day that we lived.' (It was before the term Fibromyalgia)

Being a bipolar patient for the last 10 years I've learned that not all doctors what what the hell they're talking about and I took my own recovery back! There is not a doctor out there what can CURE this ailment!

Knowing that it is a family "trait" I have the luxury of support and knowing what might work for me. I also have a great psychiatrist who helped me with bipolar and also with Fibromyalgia.

_________________________________________________________

Nina Ramsey 9730 3rd Ave NE # 101 Seattle, WA 98115 (206) 522-5243

_________________________________________________________

Also, nothing beats exercise, no matter how bad your hurt!

Dr. Jay Jones

I love these two guys, who have helped me so very much!

Pain Specialist: Dr. Michael P. Azevedo 1805 East Fir Avenue,Suite 102, Fresno, CA 93720 559-325-3070

Chiropractor: Dr. Richard S. Garabedian 2133 High Street, Suite C, Selma, CA 93662 559-896-3224

-Pearl S.

Bump

Have you looked at the list of doctors on the community tab at the top of this board? I found many good docs on the co-cure list.

Dr David Edelberg 2522 N Lincoln Ave. Chicago, IL http://www.wholehealthchicago.com/

As of Dec 2007, I now longer plan on seeing Dr Edelberg. Too many useless tests and not enough real help.

For B-HRT pellets in Chicago area:

Dr. William Epperly 245 S Gary Ave Bloomingdale, IL http://www.drepperly.com/staff.htm

Some FFC doctors are better than others. The Detroit FFC doctor is NOT one of my favorite doctors. She doesn't know beans about Lyme disease.

The best doc I've ever seen is:

Dr Charles L Crist 1824 S. Lone Pine Ave., Suite C Springfield, MO 65808 (417) 886-8995 fax: (417) 886-8389 www.drcharlescrist.com
[This Message was Edited on 11/28/2007]

My rheumatologist is ok:) but doesn't do alot of blood work or suggestions for supplements, however is good with plenty of tramadol, sleep meds, muscle relaxants..not sure if he will go further for pain....DX me way back in 2002 and very kind.Will work on med combos. Referred me to pain specialist for disk problems, still working on that.

James Bellor Jr., M.D., Columbia (and Annapolis once a week.)

I'm still looking for another good rheumy for second opionion on something....
[This Message was Edited on 08/29/2007]