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I need to find a doctor at John Hopkins or at University of MD that can dx and treat CFS or Fibromyalgia in adults. I've tried looking on their websites, but haven't had much luck with this wishy washy brain of mine. If you see or have seen a doctor at either hospital that you would be willing to recommend to me, please drop me a private e-mail. I am in Frederick County in Maryland and looking for someone I can drive to and back in the same day if possible.

Thanks.

Also....how many people have had their problems start with a tick bite? I was bitten by a tick in 2002 and it was after that, that all of my health problems started. If just came out in conversation with my PCP today and he wants to look into it more. I had the blood work today for Lyme and will see what comes from that. He wants me to see a Rheumatoid arthritis specialist as well as someone who deals with CFS and Fibromyalgia. I know CFS falls under the same catagory as POTS, but my cardio does not treat CFS.

Thanks for your help.

Nolie

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Hi Nolie,

I don't know much about the tick-bite, chronic Lyme disease leading to POTS theory but some patients seem to feel better after treatment for Lyme. The treatment itself can be quite controversial. Try searching for "Lyme" in the topic title and you should come up with previous discussions.

Your doctor probably wants you to see a rheumatologist - they specialize in different types of arthritis, connective tissue disorders (like Lupus) and also in fibromyalgia. You say that CFS is the same category as POTS (fatigue is a problem for many POTS patients) but many would put it in the same category as fibromyalgia. A sympathetic rheumatologist may well be able to assess you for both conditions.

I hope you find a good physician to work with,

Flop

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hi nolie -

as flop mentioned, you will find a LOT of info regarding other members' experiences with lyme if you do a search.

i honestly don't have any experience with docs for fibro so can't offer any input there. and rheumatology is one speciality i never utilized during my years in maryland (i went to school at hopkins & then stayed in the area for several years).

i will be very blunt though in that - unless someone new has joined the institution very recently who i'm not aware of - hopkins may not have what you're looking for. hopkins has a great pediatric doc but he doesn't accept adults as new patients (& doesn't generally accept new patients of any age for that matter). in my 8 years in maryland an EP/ cardio at hopkins (who dr. grubb had connected me with) was helpful for awhile but acknowledged that my systemic issues were beyond him as they progressed. and i have since heard that he is no longer treating dysautonomia patients at all. hopkins MAY have a CFS doc for adults, or someone affiliated with the hopkins system but not at the main hospital, but per my own research & conversations with dr. grubb (who is from maryland himself) & dr. rowe (the pediatric CFS/ autonomic doc at hopkins) i'm not aware of anyone. the one thing i'd suggest would be trying to get a hold of dr. peter rowe's office to see if they have any suggestions. but that's just a long shot & may not end up being helpful. i'm pretty certain they would be aware of anyone in the hopkins system though who might be worth your while. i think it's important to keep in mind though that, while hopkins is great for many things & many people, just b/c they're technically "best" overall doesn't mean they will always be best for every person in every situation.

in regard to university of maryland i don't have anything to offer but again, unless there is anyone new, can relay that there aren't any docs there that are particularly "autonomic savvy". better than the web site may be trying to call them to see if you get any "hits" in regard to someone who sees fibro &/or CFS patients.

the autonomic doc i had the best experience with in my years there overall (though alas, nothing's perfect :rolleyes: ) was Dr. Ramesh Khurana who is a neurologist/ autonomic specialist affiliated with Union Memorial Hospital (in baltimore not too far from hopkins) & who also has an office in Columbia, MD & - i think - somewhere else as well. he definitely "got" the fact that fatigue was a part of my autonomic problems but i'm not sure if he has particular interest in CFS in & of itself &/or if he treats fibro. other than dysautonomic i only know that works a lot with people with headaches/ migraines. he may or may not be of any help to you but i thought i'd at least mention him just in case. his contact info is listed on the DINET physician listing.

sorry that i don't have more to offer...i'd have recommendations for just about every other speciality in maryland other than what you need! so if you need other things in the future don't hesitate to ask...neurosurgeon, urologist, PCP, orthopedic, dentist, opthomologist, allergist, gastro, etc)

good luck in your quest...i'm on a different doctor search myself at the moment & know it's not an easy task.

:blink: melissa

i

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I have a doctor in suburban Maryland (Chevy Chase) who has a keen interest in Lyme and other tick-related diseases. She also has developed a pretty good understanding of POTS based upon her treatment of me. I referred someone else on POTSPLACE to my doctor and was extremely pleased. The only problem--she accepts no insurance.

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Doctorguest,

Actually, I've found more and more doctor's offices have stopped taking insurance--I think it's pretty common here in the northeast that even larger practices (for example, The Chiari Institute) don't take insurance. My former allergist, neurologist and dermatologist didn't take ANY insurance whatsoever --this was back at least TEN years ago.

My current PT doesn't take MY insurance (one of the biggest companies around) because they're so horribly slow about paying their claims. I've had other offices tell me they wouldn't take me b/c they stopped taking my insurance and will no longer be "in network" in the PPO.

While I'm allowed to go anywhere without any referrals, when i'm not in network, I'm usually asked to pay up front and then get reimbursed by insurance, which is essentially like having no insurance b/c the process of getting my money is s--l--o--w, and my 80% of the usual and customary charge (their contracted rate for similar providers) is so paltry that it's obscene. No wonder docs stop working with them--bigger isn't always better. On a good note, I do have really good prescription coverage, thank goodness.

Nina

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doctorguest -

while i obviously can't speak for lois or her physician i am aware of several doctors who treat lyme who don't except any insurance (and don't know any others aside from the new "concierge docs" who don't accept insurance.) i don't have any personal experience with this but just thought i'd mention it.

B) melissa

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Thanks, Nina and Melissa for the info. I am aware that Lyme doctors and some CFS doctors do not take insurance, but I haven't heard too many "regular" physicians doing so, although I completely understand their decision. As Nina said, insurance pays very little for a visit of a patient who may take an hour or more to evaluate if they have complicated medical problems, like the autonomic disorders. This is partly why many physicians do not want or can't afford to see patients with dysautonomia. Obviously, this is not an excuse, but in reality this is what happens. Having consulted and followed patients with a wide range of medical problems, those with autonomic disorders and pain syndromes by far are the most time-consuming, not to mention challenging to manage.

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My doctor is a pulmonologist, who has been keenly interested in Lyme Disease since the early 1990's. Her practice is not a Lyme practice. Her practice specializes in pulmonology and critical care medicine. The group practice used to take most insurance, but then stopped. She felt she could no longer devote the time necessary to evaluate/treat a patient and still have an economically-viable practice.

Nothing is as bad as going to a doctor who can only devote x number of minutes to you and then starts looking at the clock or who gets interrupted by an assistant and when the doc returns, your time is up.

As Nina has said, many doctors have opted out of the insurance network. During the past few years, that has been the case with my internist, cardiologist, gynecologist, surgeon, opthamologist, ear, nose, and throat, etc. I have had to evaluate my choice of doctors and go out of network for the doctors who are most important to me.

Doctors practicing within a hospital generally accept insurance. Several years ago, my POTS doctor gave up private practice altogether. He was in a teaching hospital--splitting his time between teaching, clinical reseach, and patient practice. As you well know, the time it takes to evaluate and treat someone with POTs is certainly a whole lot more than the time it takes to evaluate a patient in a pacer clinic. Bascially, he was not a "profit-center" for the university.

It is indeed a sorry time for medicine and patients.

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Thanks for the info, Lois. I guess things are changing to how it was in the past. When I started medical school (x number of years ago B) ), we were told that those who chose medicine for the money, should go to business school. lol - it's true, unless you're in surgical subspecialties, radiology or dermatology. Or dentistry - it's just unbelievable to me that most dentists work less than 4 days a week, do not take insurance, and charge literally an arm and a leg for procedures that take 20-30 minutes. Their offices are beautiful, and they are usually a happy bunch because their stress level is minimal compared to physicians'. In my area dentists are completely out of line, probably because they make so much, they don't care if they loose a potential patient. I had one endodontist call me on my cell phone once to tell me that he will never see me, even if I need to be seen, because I had to cancel an appointment with him twice due to my own work schedule. I didn't just skip the appointments, I called in advance to cancel so that he could fill with other patients. I was shocked when his office called me and rudely said not to ever come to their office, and this was from a highly recommended dentist.

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Actually, even doctors at major hospitals don't always take insurance. I was seen at the Smell and Taste center at Univ of Penn, and they took no insurance. I have an upcoming genetics appt at J. Hopkins--they only take insurance where the policy was issued from within Maryland.

I think what also complicates matters, especially in my area, is that it's so expensive for doctors to keep liability insurance that some have chosen to leave to other states, or, some have left medicine completely. This then makes it tough a doctor who will take a new patient for some of the specialties that have higher risk of complications--for example Ob/Gyn--my gyn practice stopped doing the OB part for a few years, just last year restarted.

Okay, back to topic--if you've not checked out the CFS-CoCure good doctor list, here's a like. Perhaps you can find what you need there--the site lists docs all over the US and internationally--and is updated fairly regularly.

http://www.co-cure.org/Good-Doc.htm

Nina

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dr's getting to little from insurance to make money.lol, iam almost rolling in my chair. i look at what my ins. pays my doc(not dys speciaist) but others, and if they would charge what the ins. company gets to pay. we could all afford to go to docs. why is every visit to a doc a classv visit(which puts the most money in their pockets) when they only spent 5 min wiht you. it is the only profession i know(ither than weather) you can be wrong 90% of the time ,have no recourse for being wrong and still get paid and charge what you want. i asked why the mri costs so much 1 time, my answer, well we have to do maintainance on our machines. i was looking at the last time it had been inspected and it was6yrs prior to that. give me a break. and don't get me started on dentists.

i have never seen a poor doctor and that's all i have to say about that.

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Thanks for info you guys gave. I will check into them. As for Dr. Rowe, my daughter sees him and I sent him an e-mail to ask his opinions. He said pretty much the same thing about JHH and UMD. My insurance has provided me with a couple of names to research, so I start there and then check into the one's you all listed.

I spent today at John Hopkins with my daughter who has pots. Dr. Rowe treats her and today we seen the Hematology clinic. Not good news. Anna has Von Willa brand. Could be worse, but definitely not good. She has a GI mobility study later this month with a TTT and now she has to have DDAVP before the procedure to prevent her from bleeding to much. A little scary. It's kinda like a mild form of hemophilia. Still learning about it.

So, of course I'm trying to juggle her illness and mine at the same time and it gets hard sometimes. I will keep you posted as to what I find out about doctors.

Thanks again.

Nolie

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There is a magazine which puts out a list every year of the top doctors in NYC (in all specialities) including the insurance accepted and many don't take any insurance at all. I guess if they have enough patients willing to pay out of pocket, I don't blame them as I hear insurance companies are a pain to deal with.

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