Ohio

[Guest Julia]

Doctor Roberts was recommended to me a while ago.

I keep telling all my different doctors about the chemicals I was exposed to over a period of years at my old employer.

Fumes came through the ventilation system into my office. I worked for a Uniform rental company (Coyne Textile Services) located on Dorr St. in Toledo Ohio. Not the good part of dorr eaither.

At one time the neighborhood behind them called the EPA because fumes from the soiled shop towels were coming into their sewers through the water used to launder them. Coyne was fined and ordered to launder the towels at the Cleveland facility. A good majority of their shop towel business was Ink companies. OH----you would not believe the fumes

Lead based---all of them---i'm guessing. The fumes would actually soak into any food/snacks left in the front office area. It had a metallic taste! When I became real ill with POTS---not diagnosed yet-----this is when they were trying to find out what was wrong------lead was found in my 24 hour urine test. But later it was not found in my blood. Another urine test was done and ---no lead.

I still think I have some sort of lead based toxins in me----but I have a lot of difficulty finding someone who will take me seriously. I called Dr. Roberts office, and he was not taking patients to evaluate for toxins. Maybe I could have Dr. Johnstone (my PCP), set up an appointment since she recommended him in the first place. But i'll go see him to look into my skipped beats problem I keep having when I try to exercise and then bring up the toxin issues.

I'm telling you these fumes were toxic. Other people got sick as well---but short term. I was the employee that was there the longest in the front office. I just figure I had more of a rough time tolerating them because of my long standing congenital cervical stenosis, and chiari.

I think the treatment you are talking about is chelation (spelling). This can be a dangerous procedure if not done properly---or if it's in the wrong hands. My physiology professor said doctors can lose their license for doing it. I have never heard of that. Dr. Neilson in Maumee---just outside of Toledo has done it for years, and treats patients with mercury poisoning. But a lot of people can be found to have some levels of mercury in their body if they stir it up enough.

Julie :0)

[Jackie]

Julie: I'm wondering if you are the person I wrote to about the support group at St. Luke's? I wrote you back by the way and haven't heard from ya' so when I saw your post I thought it might be you. If so Hi!

About Dr. Roberts, back when I saw him I think it was in 1999 when I had the instability problems with tachycardia, etc. due to steroids, he was the only physician who acknowledged that something certainly was going on. I felt relieved and blessed to have found him. He did a cortisol challenge test (and I can't remember if anything else). Since my episode started with an allergic reaction to antibiotics requiring steroids he thought maybe an overgrowth of yeast may be playing a part since I had ongoing diarrhea at that time too. Well, the long and short is he gave me Diflucan and these extra-strength vitamins they sell in his office and I was to follow up. I had to reschedule my appointment a few times because of my new job (I had to switch jobs because I had missed so much work at my prior job at St. Charles with this episode and also I wanted to be first shift again). So, anyway, each time they would kindly reschedule my appointment and then I think the third time (?) they simply said no you cannot reschedule because you have rescheduled too many times already and he will not see you as a patient anymore. No explanation other than that and no warning that if I had to reschedule beforehand at any time that he would stop seeing me as a patient. I was very hurt and scared. I never did get my test results or anything. I wrote him a letter but never mailed it. I wrote it off to over-aggressive office staff never fully believing that a doctor would do that to somebody who was sick and in need (that we are ill and struggling to hold down jobs so as not to become homeless, etc.) but I felt better and balanced out for the most part eventually so I just went on with my life.

Well, flash forward to last summer (2003) when I had the same problems start though much worse (tachycardia, sweating, diarrhea, weight loss, etc.) I asked my PCP to send me to Dr. Roberts. I made the appointment, waited a month to see him, and arrived at his office. I started telling him about my last episode from steroids and how this episode started and the whole story. I have since married since that appointment back in 1999 and when he found out my maiden name and that I had been dismissed as a patient for rescheduling my appointment he was very rude and said "so you shouldn't be here right now"...."what do you want me to do for you". I was in tears. It was horrible. He positively promptly dismissed me. He did however rudely shove a name scribbled down on a piece of paper at me as I left his office in shock and said maybe this doctor could help me as he deals with mercery toxicity, etc. I will have to search for the name and post it for you since you live in my area. Maybe this doctor (who I believe is just a DO) could work you up for this stuff.

My overall opinion of Dr. Roberts is this....he seemed genuinely kind when I first saw him and I counted him a blessing that he seemed to understand something was wrong. However, evidently his ego is much larger than his heart and I would not recommend him to any patient. Beware of rescheduling an appointment if you do, because they will kindly do it a couple times and then BAM you are dismissed never to be seen by him again without any warning that you are doing anything wrong. If somebody had told me that rescheduling my appointment would cause him to dismiss me as a patient, I would have pleaded with my employer to work it out (I didn't have a set schedule and it was a very confusing demanding place which I ended up leaving eventually because of the disorganization of my schedule). I have never in my life been treated so coldly by any physician and having seen some bad ones...he takes the cake.

Last I knew though, he did do chelation treatments because my brother-in-law used to see him for those treatments due to some kind of supposed metal toxicity determined by Dr. Roberts (expensive and not covered by insurance at that time) which is how I was referred to him in the first place. My brother-in-law suffers from atrial fibrillation. By the way, the chelation treatments didn't work anyway. I'm not sure Dr. Roberts has a very respected reputation among other cardiologists either because his approaches are seemingly more nontraditional (I've seen some snicker at the mention of his name) but I suppose his nontraditional approach could ultimately be beneficial I suppose as people with our disorders need to try the whole spectrum of approaches and that was why I wanted to see him in the first place myself. Perhaps you will have a good experience. I warn you now though...don't dare reschedule an appointment.

To finish my story of my long-awaited and ill-fated appointment last summer though, I refused at the desk in tears to pay the office visit co-pay asking them how could they charge for an office visit when he simply walked in and asked what was wrong and when I launched into my story and he found out I was dismissed before for rescheduling my appointment that was that and I was ushered to the front desk. It was a NON-VISIT! They are still billing me and eventually I will pay it but it still hurts when I think about it. I wish him no ill tidings but I hope someday he can suffer an hour of understanding of what it felt like to be treated that way at a time of suffering and need. I saw him at the time as my only hope and left feeling not only hopeless but ridiculed and ashamed as if I had run him over with my car before or something. I honestly thought it was a mistake that the receptionist treated me that way before and that he would certainly understand, but he did not and did not want to suffer my explanation either. Thankfully I found Dr. Grubb and probably ended up better off after all. As for Dr. Roberts, in my opinion, his ego is much greater than his desire to treat patients and he is completely lacking in compassion, empathy, and character. If I find the name he gave me, I'll post it (of the DO he recommended that deals with metal toxicity). This is my honest and true experience with him...take it for what it is worth to you. I hope your experience goes much better.

[Guest Julia]

Hi Jackie,

I did respond to you---I hope you got it. Our support Group meetings are the last Wednesday of every month. However, we are in danger of losing the room we have at St. Luke's due to very low attendence. Our meetings are at 6:00pm at St. Luke's hospital in Maumee , Oh. Classroom 1 or 2.

I am sending out a message tonight to all the members to see if they are interested in meeting this WEdnesday. If not then I will have to cancel the room so someone else can use it. I have dragged my feet this months meeting notice out of discouragement. I always send a reminder 2 weeks before the meeting and then another the night before. I rarely get a response of more then two or three people. I never know how many to paln for.

I plan to keep the group going, only this time, having the group members decide on when they want to meet. This is if the room gets cancelled---

Take care,

Talk to you soon,

Julie

[calypso]

I am from Youngstown, Ohio, but now live in Wisconsin. However, maybe the reason so many are from Ohio is because Dr. Grubb is in Ohio and patients have found him -- and therefore the right diagnosis of dysautonomia.

Weird.

[briarrose]

Actually, the only reason I found Dr. Grubb was by accident. A friend of mine was visiting St. Paul and I had just got a suspected diagnosis. I asked him if he would stop at the NDRF foundation and pick me up whatever information they might have on hand so I could compare my symptoms. He came back with the last conference tapes. I was so impressed by Dr. Grubb's knowledge base and presentation, I knew he was the doctor for me. I didn't know he was in Ohio, just a strange coincidence.

Steph

[Sue]

I think I am now regretting going to Cedar Pointe. Every year for the last hmmm 16 I believe.

Sue

[briarrose]

Come on! Cedar Point is a great amusement park! Been there a dozen times since I was a toddler.

Steph

[scamelo]

Cedar Point was fun, especially for my 3 kids, But my symptoms started there, so my memory of it is not as positive as it should be.

[Rocknrobinz]

I'm from cleveland ohio. I never heard of Dr. Grubb.

RobinBZ

[cmtaylor5]

I'm from Erie, Pennsylvania which is not far from the Ohio border. Erie is not a big city, but I know several people there who have POTS. I have noticed in the year that I've been visiting the board that there seems to be a "Great Lakes" Cluster. If I'm not mistaken, I believe there is a cancer cluster in this area, too. When my neurologist first found out my hometown (I live in the South now), he immediately assumed that I would have MS.

It is strange.....

[dizzygirl]

carolyn.. I'm from erie pa too!! I can think of about 6-7 people off the top of my head from the small town that i grew up in (fairview) who i would bet money that have dysautonomia of some kind.. and i can think of about 5 more people from NY where i lived for 5 years.. who also again i would bet money that they have dysutonomia of some sort.. and the town i'm thinking of is only about an hour awau from erie..

I'm not from Ohio.. but i spent summer and vacations with my gramma visiting my great grandfater in martin fairies/mingo junction Ohio...i was a child from a little tyke to about 8-10 years old.. few times a year to see pappy!

but as im sure you know fairview has lot of farms and stuff on the outskirts of town.. i grew up across the street from huge farm field.. and right next door to a neighbore lady who had a small farm with some chickend early on cows.. then horses. and a tons of furry kitties.. and dogs.. there was a pasture like right next to our yard.. where the horses ran...

my thoughts and my point actuallly i wonder about lyme disease..(ontop of something genetic with pots) and chemical exposure as welll..about 6-7 people with in a few mile radious. makes ya wonder..makes me wonder i should say!

what part of erie are you from?

[lizzy]

im from dayton ,ohio.mom was a cemist for lawyer visted all the plants?

[KellyErnst]

I'm from Ohio have spent my whole life around Lima area where this is a big refinery and chemical plant. Also I have been to Cedar Point and Put-N-Bay lots of times. My brother now lives in PA and has had MS for over 8 years. Seems like there must be some kind of connection with these kinds of illnesses and where we live.

[HEIDYLYNN]

I am also from ohio. On the lake between Toledo and Cleveland. Not far from Davis Bessie Nuclear Power Plant and Cedar Point. But I believe that my condition started after a very bad car accident. I also see Dr. Grubb. It is interesting that there are alot of us from the same regions.

[yikespanic]

I have lived most of my life in Ohio, born in NC while my dad was in the service, grew up in Cleveland since about age 2?, moved to Parma (subburb of Cleveland) in 1993. I noticed the #'s of POTS in OH struck me funny. I was diagnosed by Fouad at CCF to, but am treated by Dr. Grubb. I bet more people have it we just live in an area where it is diagnosed and treatment more often. Probably where no one treats it it is not diagnosed?????? Just a thought. Another crazy thought is that have you noticed the # of lyme cases popping up here??? Maybe there's more to it??? When I got diagnosed Grubb said he thought mine was brought on by a virus (my POTS) it something to ponder if yours was thought to have been brought on by one, no one ever thought to check me for lyme maybe we should be checked if they thing a virus is the cause. I wish I had been tested back in 2004 when I initially became sick maybe I'd be feeling better by now and maybe my pots wouldn't have gotten worse as time went on. Sorry for rambling, just having that kinda feel sorry for yourself day....

Kim

[Guest]

I am living in warren ohio

Dave

[BEE]

I live in Ohio..just south of Cleveland about 20 min or so.

[Babettegall]

Well, this certainly is interesting, isn't it?

I live in Ohio, between Cleveland and Akron. I was born and raised in Wisconsin and moved here about 8 years ago. Strange thing .... my symptoms became bothersome, and a dx was made since the move to Ohio.

I started to get sick about 1 year after we moved here......... I wonder if there's any correlation? Interesting!

[singledadof3girls]

I was born in Altoona PA, but we moved to Ohio when I was like 6 years old. I knew that it seemed like there were a lot of people on here from Ohio, but I never knew how many until I read this thread. Must be something in the water.......

[Sophia3]

I am from Ohio..but SW

BUT close to some chemical companies (air miles wise) and uranium plant (air miles wise)

However, I also had some accidents as a kid that left to hard whacks on my head (the final blow, falling down an entire flight of wooden stairs on my back) From what I read, whacks on the head can cause pituitary and hypothalamic dysfunction and nothing can be done.

But explains MY having ANS symtpoms my entire life. As far as enviroment, well, always a possibility.

For years CFS Chronicle wrote for those of us with that "are we just canaries in the mine?"

[jenwic]

I live in Adams County, Ohio about 2 miles from the Ohio River. It is about 1 1/2 hours east of Cincinnati.

[BallroomA]

I am from MI (we live on the ohio/michigan border) my dad works in Toledo, OH so I basically grew up there...go to college there now. My cousin whose also from Toledo, OH has really severe POTS among other things. My aunt thought of the ohio connection awhile ago....always thought there might really be something to it!

[Cheryl]

I grew up in New Orleans. The bottom end of cancer alley. The Mississippi River is lined with petro chem plants from Baton Rouge to New Orleans. Not to mention the fact the the river drains 2/3 of the country and whatever they dump in it. Our drinking water comes from the Mississippi. There's also a nuclear energy plant nearby.

Mosquito control is another possibility that I considered. When we were kids (and stupid) we used to chase the mosquito trucks in the evening so that we could play in the "fog".

[Leigh]

I recently saw a Web site that stated handling harsh chemicals as a cause for POTS. I developed POTS after losing my mom, being hospitalized with flu, then having a baby all in a 2 month period.

I grew up in Bowling Green, Ohio. Dr. Horrigan is the best doctor to ever walk the planet!! She mentioned POTS when I developed pregnancy-induced hypertension, but I never gave it a second thought. I'm going to go see her again if I can't find someone in Dayton.

Right now, I drive all the way up to CCF to see Dr. Fouad. They are taking FOREVER with the report, but now I see why. I'm hoping to start treatment ASAP.

Does anyone in SW Ohio know a good PCP and/or OB who knows what they're doing? My doctor is clueless.

I also find this interesting....My mom died of Wegner's Granulamatosis and there is a higher # of diagnoses in Ohio than most states. We were always convinced it was the mold in the air and her basement.

[LYNDA66]

I was born and raised in Ohio. I think there is a connection and I also think that people are being neglected in this state and others because a lot of MD's don't know about or understand dysautonomias. I see Dr. Chelimski at UH of Cleveland.

Has anyone had some symptoms get better when in a different state or country? I went to the bahamas and tennessee multiple times since my diagnosis and my symptoms improve when i go to those 2 places.