Discussion in 'ME/CFS Doctors' started by Terri, Dec 16, 2009.
I am looking for a good CFS doctor in the Cincinnati area.
My good doc is in Akron.
The other part of my care team is the Lavalle Metabolic Institute in Pleasant Ridge (naturopaths).
But other than that, here is what I know: a friend of mine who had CFS for 5 years, went to Scott Swope in Lebanon. She was able to continue to work for the 5 years, but barely, so she was at say 50%?. Now she says she is 90-95%, can exercise, work, volunteer, have a boyfriend etc. Her symptoms such as a sore throat or swollen glands start to come back if she is under a lot of emotional stress or overdoes things. Then she cuts back and rests up and she's ok. She says Scott also had CFS at one point.
If you have FM, go to the Hal Blatman pain clinic.
Here's a funny story about Morrow. When we were kids we would go on vacation to Cowan Lake. Going the back way up Rt. 22, we would pass through Morrow. We would always chant "We're going to Morrow today!" Get it?
Thanks caledonia - It looks like Scott Swope is a family doc, is that right?
I am definitely going to call his office, my family doc is really getting upset with me lately for taking supplements and changing my thyroid medication based on recommendations from Dr. Lapps office.
I would be thrilled to have a family doc that understands this illness (or at least believes in it).
I am too tired now to continue to fight with these docs.
BTW - do either of you know any good disability lawyers in Cincy? That is my next project as I have recently stopped working due to this DD.
Thanks for the lead
Thanks Caledonia for the name. I live very close to Lebanon, I will call Dr. Swope and see if he is accepting new patients. I have been ill for 14 years and managed to push myself to work up until about a year and a half ago when I just couldn't push any more. I am self employed so basically have just downsized my business to nothing, I work about 10 hours a week. Mostly manage to go to the grocery, cook and keep my house and laundry tolerable but gave up trying to have a boyfriend (or really any social life) a long time ago.
I do get the to Morrow saying. There is actually a sign in town as you are leaving that says "Come back To Morrow".
I have been to Hal Blatman, on 2 separate occasions. He is very expensive and doesn't take insurance, plus for the past 14 years none of the docs I have seen ever address my flu like flares, only the FM and it only recently that I myself have figured out that the flares are a symptom of CFS, not FM. And that there are tests I should have to rule out certain viruses or to treat them if present. Sorry I'm rambling but Dr. B is also supposed to be a specialist in CFS and I am angry that he never addressed this issue.
SpecialK82: Like you, a few years ago I just got too tired to continue dealing with drs, just sunk into acceptance but seeing the show on Dr Oz has given me a little hope so I am going to try one more time. This time I am goin to try and get a doc to not worry about treating the symptoms (which hasn't worked) and to do tests to find out if I have a virus or parasites or yeast or whatever.
I too have decided to start working on the disability. I haven't decided if I will use a lawyer yet. The Phoenix Rising Website has a good article on disability.
Thanks tjones for the link - I haven't started the disability process yet just because it sounds so daunting and I worry about my energy level to handle the stress. I wish you luck in filing! If I find a lawyer that has won CFS cases before, I will let you know in case you want to go that route.
Please let us know about your experience with Dr. Swope if you decide to see him. I have not called yet.
Do either of you know if there is a CFS support group in our area? I have never been able to find any - only FM groups.
"Come back to Morrow" - purty funny. I guess I haven't been up that way in a long time.
There are no CFS support groups that I know of, only FM.
Lawyer for SSDI - Mooney and Parks downtown Cincy. I used Mike Mooney but either one is good. I never actually met him in person, just worked by phone and mail. My SSDI was approved on the record, so I never had to see a judge either. Of course SS made me wait for two years until I had a hearing scheduled.
The only problem with lawyers is they typically won't take your case until you have been denied at least once and are waiting for a hearing with the judge.
A fair number of people on the Prohealth board have had success with Allsup, who will take your claim from the beginning and fill out the paperwork for you. It may help get your claim approved earlier, because they are former SSDI workers and know the system. However, they are not lawyers, so if you get to the part where you are denied and waiting for a hearing, I would switch to a lawyer. Of course, I would interview 3 lawyers or disability representatives before signing on with anyone.
Hal Blatman may be the guy my brother went to, but I'm not sure, at least I've mentioned the name to him. My brother has undiagnosed CFS, all the same symptoms as me, just not as severe. He went to a rheumatologist and got diagnosed with FM, even though he has no tender points, pain etc. So no, I wouldn't expect any rheumatologist to know anything about CFS.
TJ, yes, I would apply for SSDI right now. You need to have a certain number of work quarters within the last 5 years to qualify. You don't want to let that benefit slip out of your hands, otherwise you are stuck with SSI, which is basically welfare.
Kristina - You need to be off work for a year to be eligible, but you can get around that. I would apply after being off for 6 months (around the same time you would apply for LTD), then get a letter from your doc stating he expects you will be off for at least a year. Or even earlier if you can get that letter.
I heard somewhere once that you needed to be off work before applying but I thought that must be wrong. How do they expect a person to support themselves in that year? I am single and self employed and still manage to make a little money each year but every year it gets harder and I lose more customers and business because I can't function well enough to think and manage things. Even though what I make isn't much, it is still better than nothing and I hate to just throw it away. Crazy rules.
SpecialK: Also, I don't know of any CFS groups either. What part of Cincy are you in? It might be possible to start one.
I hate to be too discouraging, but I'd argue that there's little point to seeing any doctor for this disease except a small handful. Sure, there are some doctors out there who won't just roll their eyes or try to diagnose you with thyroid problems or deconditioning or a heart problem or depression, etc.; but if you actually want a real diagnosis based on extensive, high-tech diagnostic tests by somebody actually qualified to interpret them, and someone qualified to actually treat you with serious medicine, the list gets very small.
It'd be something like
None of these folks, alas, is near you. Traveling to them will be expensive, paying for their tests sent to highly specialized labs will be expensive; they will order brain scans; they will order all kinds of things. It will be costly. That's the sad reality.
Another option, and I don't say it lightly, would be to wait a year until Labcorp is doing the XMRV test (and false negatives are reduced, too) and simply ask for it from your doctor. With a positive xmrv test, you can be treated by a local specialist willing to prescribe an anti-retroviral.
In theory, that's what short term and long term disability is for. I say "in theory", because even though you've paid the premiums and you are truly sick and qualified for the benefit, they are highly likely to either deny your claim or only pay for 2 years. The odds are better if you have a private policy, vs. a group policy from your employer, because you are allowed to sue them for damages. If you have the typical policy from your employer it falls under federal ERISA regulations and you are only allowed to sue them for what they were supposed to give you in the first place, plus lawyer's fees, which is like a slap on the wrist. So they routinely deny people hoping they won't have to pay out.
In theory, you can be on SSDI and still work part time up to Substantial Gainful Activity limit of approximately $900 per month. If you're self employed, there are hourly limits. I say "in theory" because while you are applying, lawyers will tell you to quit working altogether. The reason is that you will have to prove that if you can work part time, why can't you work full time. It's easier to prove you can't work full time if you can't work at all. I have heard of a few people working part time while applying and winning their benefits though, so it's not impossible.
After you get approved, it's safe to work part time up to the limit.
A lot of people do part time work "under the table" for cash while they are applying so they can make ends meet. For example my shrink told me about people with a psych diagnosis cleaning houses. Of course if you have a bad case of CFS, that's not going to be possible.
But, yes, when you become disabled, our social safety network is so horrible you are between a rock and a hard place. I have heard many stories of people losing their houses and becoming homeless or even dying while waiting for disability.
If you are getting into dire straits, like about to go into foreclosure, you can contact your Congress or Senate representative's Constituent Services Office and they will put a Congressional Flag on your file and help it move through the system faster.
I hope I am not scaring you with all of this information. Please do apply ASAP. The sooner you get started, the sooner you will get approved. Like the Nike commercial says, "Just do it".
Slayadragon has gone to Dr. Guyer in Indianapolis and he seems to be on the same level as a Klimas, Lapp, Cheney, etc. Of course it's all out of pocket and expensive.
Then if you are open to very alternative medicine there is Mike Dessin's doc in Columbus. Also very expensive. Mike was brought back from near death to about 80%? You can follow 3 test patients on the social group A New Day on this forum.
For now I am happy with my Akron doc (environmental medicine) and my naturopath. I can bring them any protocol I find on CFS forums and they will help me evaluate them for safety and effectiveness, and then if it passes, help me administer them. Right now I am working on adrenal/DHEA support and Richvank's Methylation Unblocking Protocol.
I think that is a pretty good compromise for now. Of course I am keeping my eye on all the XMRV stuff and would like to get tested eventually, but I am waiting on replication studies, more accurate testing and so forth. I don't see any point in wasting money on it now - I used to be an early adopter of technology, but not any more.
caledonia & tjones
Would you two be interested in meeting for lunch one day after the holidays?
I would love to talk face to face - and have our own little support group of sorts.
Caledonia - you're a wealth of knowledge on disability - thanks so much for the name!
I'd be up for it, but right now my sleep is reversed. I am going to try to move it to a more compatible schedule with the rest of the world over the next few weeks. You can PM me anytime if you want to exchange phone numbers or whatever.
I sent you a PM. Look at your name in the upper right hand corner of this website. There is a listing for private messages, click on that.
SpecialK - I would enjoy meeting for lunch. I'll send you a PM with my number.
Caledonia: Thanks for all your info, a lot of it is discouraging but after 14 years of struggling with this illness, the medical system, etc not unexpected. Frankly, most days it all just feels so overwhelming. I wish I had my own personal bulldog advocate whose soul purpose in life was to take care of me. (I can dream can't I?)
I saw you post On prohealth, so came over here to see what you wanted to say that you were unable to say on there.
Hi Krock, Glad you were able to make it over here. That other board is unmoderated anymore, leaving the door wide open for personal attacks if you accidentally say the wrong thing. This is a much better board.
Huber is a newish addition to the staff. I've worked more with Chris Greenman and Pam Cordes. Pam has moved on to another place, so I'm back to working with Chris. My sister has the same complaint about Huber that you have I think. Kind of rushes through things and maybe doesn't listen as well as you would like. Didn't take the time to get familiar with her chart/labs before her appointment. Chris is more laid back and you'll have time to get a word in edgewise. However, all 3 will look at your chart and make recommendations no matter who you're working with.
I'm not sure what kind of tests you were looking for. For me, they looked at the labs I had brought, then did electrodermal screening and looked at a drop of my blood under the darkfield microscope. Then they sent me home with a bunch of supplements to try. Per my other doc's suggestion, I started one supplement at a time, and took notes on any reactions, so I know what is doing what. When I got all of those going, I came back and we retested, you could see a lot of improvement in inflammation and so forth.
Then over time, we gradually worked on the gut, heavy metal testing, and chelation, thyroid and adrenal support and so forth. After doing several in person visits the first year or two, I've mostly been working by phone. Which really they do for free. Of course supplements cost around $300 a month, but they do keep me going at a much higher level than I would have otherwise.
I'm still waiting on my methylation panel results to proceed further with that. There was a big snafu with the lab having to move that's delayed that for months. In the meantime, I've been taking Folapro all year and having good results with just that, which I hear is a bit unusual.
It's kind of up to you to drive the process, rather than you waiting on them god-like to wave their magic wand and cure you. You tell them when you've completed what they suggested and how it's going. You bring up any problems you're having that need to be worked on. You bring up that you want to work on methylation and so forth.
You can also try a Google Site Search
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