posted
I'm thinking about filing some kind of complaint.
Dr. Y has been completely disrespectful to me and my father. He talks to me like I'm some kind of clueless child. He answers phone calls while we are in the office, but I can never reach him by phone...hmmm. And these are not emergency calls. He charges way too much for painful testing, which is done every 3 months. My insurance company and I have spent over $60,000 on IVIG and tests, seen zero results so far. He comes off as a jerk to me to be quite honest. He thinks IVIG will cure anything. Then when it doesnt, he is all the richer and we are still suffering. Oh well, too bad for us.
It took him a month and a half and about 50 phone calls to have him sign his precious name on my Social Security papers, after he twice told me he would have to charge me for doing just that(!!!). He has put my treatment on hold now because he has a gripe with my nursing company over a stupid signature. Now I cant get my treatment at all because my insurance only uses that nursing company. He thinks he is a god, but really he's a one-trick pony hack. Not to mention other horror stories Ive heard about him.
If anyone else is having problems with him, I'd like to know
Posts: 10 | From Madison, CT | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet. Sorry to hear you are so unhappy.
I do have to ask though.... why do you keep going to someone and paying for treatments you don't think help you... especially if you aren't seeing results that you want and are so unhappy about it all?
There are other doctors with other protocols that can be your doctor.. and maybe you could be happier?
posted
please send me a private message and give me the last name of this llmd; thx
who i think it is; we have removed him from our llmd list!
also, if it's same one i'm thinking of, member Bea Siebert had many problems with him on her hubby and confronted this llmd at a llmd conference!
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
you're not alone. i don't have personal experience with this doc, but i've read on this board of others who were highly dissatisfied with him. hopefully one of them will come along and offer his/her experience.
ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
As I posted before, Dr. Y gave me the medical reason to procure IVIG, and I do the IVIG with another local doctor which has worked out well. IVIG has made a huge difference in my illness. I don't even do the massive doses that Dr. Y suggested because of a sensitive body. Even so, I have regained muscle mass, gut issues much beter so I have regained weight, and my energy is a lot better, as well as my mental clarity.
I do have autoimmune issues, so in my case, this was helpful.
I don't regret being able to get the IVIG, but my one suggestion would be to try to run it through a local hematologist,neuro, or allergist. This way tabs are kept on the patient, and the dosage is more to the individual body.
The problem with him accepting phone calls in an office visit is that he is head of neurology in two different hospitals, I believe. It is difficult to talk in that situation, but I found that my appt. was all inclusive in terms of exam, etc.
My main difficulty was maintaining communication through distance, and yes, money was an issue. I made my own decision, along with the help of my pcp, to get help from another local doc. It has worked out very well, and I am very grateful to get the treatment, which has been making a difference.
I have almost lost the tremor that I have had in my left hand for nearly 8 years, and I finally look "healthy," in the words of my local neuro and pcp.
That is just one patient's experience. My suggestion is to always do what is best for you in terms of dosage, finances, etc.
One more important distinction--Dr. Y is not a llmd, he is more lyme literate. Everyone has their "thing" in protocol aspects, and the IVIG is his. Like everything else in the Lyme world, it doesn't work for everyone.
Best. Di
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
IVIG has been helpful to me. I do small amounts. If I do more, I don't feel well (toxic, sludgy). It can be very useful. I would "use" a doctor and not expect a bedside manner. Its the IVIG you want (or don't). Occasionally I've run across a doctor I couldn't stand, such as Dr. R in Queens, an immunologist who actually has gotten IVIG for some folks. He was skeptical if not disgusted by my vitamin/mineral IVs and my low amounts of IVIG by choice and I knew we were not on the same page and did not go back. If you do go back to such a doc out of necessity, you have to "handle" them. Your goal is to try something that might help you, not to have a personal friendship so to speak.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
The Idea of IVIG is great, Im sure it helps people and I hope eventually it helps me. I just dont like the idea of a guy taking all my money and then not signing my SS papers. I'm poor because of him, and he wants to charge me to sign his name. And, cutting off my treatment because of some tiny problem with my nursing company? This goes being basic bedside manner and just dealing with a dr being a jerk. Thanks for all the comments
Posts: 10 | From Madison, CT | Registered: May 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Maybe consider the Neurologist in CT. I know where you're coming from. The frustration is unreal when dealing with someone who you really thought had your best interest in mind, and then....they don't.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
You sound angry at him but I'm not sure I understand. Maybe in order to sign your papers he had to look them over and considered that consultation time as it would be on the phone (for some doctors). I don't know what the gripe is with your company but maybe there is some legitimate issue, who knows. The reason he is running all those tests, at least one reason, is to document the effects. Perhaps ultimately IVIG will be covered for certain neuro problems of lyme which would make a big difference for many. ArtistDi got a state grant to pay for the testing. You say it hasn't helped you. I didn't get the impression he thought it cured everything. However it makes sense it would work on the autoimmune/infectious aspect of neuro lyme, as it works in other similar autoimmune/infectious neuro conditions such as guillain-barre. Maybe he is a jerk as you say, many high profile doctors have lousy personalities, but in the end he may do well by lymies if he sets a standard of diagnosis and treatment that insurance will cover. Good luck--if it hasn't helped you at all maybe it isn't the right treatment for you.
Posts: 2276 | From united states | Registered: Jun 2004
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I can totally relate to your experiences with Dr Y. Hubby went to him for an outpatient appointment last December. Ended up in the hospital at Lennox Hill with the doc as attending physician.
It is hard to compare experiences as hubby has had some really horrific things happen in the last 7 years. This hospitalization definitely rates as one of the worst.
When Dr Y thought we would be able to come up with the $ for his tests he was friendly friendly. When we told him that wasn't going to happen his attitude changed entirely. His final diagnosis was that hubby needed psychiatric care. Obviously he did not have any active tickborne infections despite his positive bloodslides from Fry lab for both Babesia and Bartonella.
Hubby and I have a legitimate medical complaint against the Dr based on his hospital treatment. The Dr stopped various symptom control meds against the advice of both a pain specialist and the hospital psychiatrist. We are still undecided as to whether to file a complaint with the medical board.
I am not sure if it would be more stressful for hubby to relive the fiasco or if it would actually be good for him psychologically to stand up to this doc and the system. we did complain to the hospital while hubby was there.
Just got our copies of the hospital records this week finally and it is full of mistakes. Even says hubby has Parkinsons among other things.
My suggestion would be to move on and find another doc who believes in chronic coinfections. I went to a support group meeting while hubby was in the hospital in New York. At least 50% of the patients who were getting IV IgG from Dr Y said it was ineffective or only helped for a short while.
It sounds to me like you have given the IV IgG a good trial. At this point I would cut my losses and try something else.
This is not medical advice, just my opinion based on hubby's experiences.
Hubby is doing much better since I found a new LLMD and a master herbalist and he is treating the Bart.
Bea Seibert
Editing to add: In my opinion Dr Y is one of those greedy docs who give LLMD's a bad name. He told us that he wrote some of the insurance company guidelines for use of IV IgG. He has a patent on the nerve biopsy test he uses to decide who gets treatment and of course the test can only be done by him or in his lab.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Has ANYONE had a good experience with this guy?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Oxygenbabe - Am I understanding you right that the tests are to document side effects for his research and are not medically necessary for the patient's treatment and health?
If so, then he should not be charging the patient for those tests. He should get a grant. If it's medically necessary, then it is different.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't know him personally at all but from what I've read, he is documenting this. ArtistDi would know more. It is my impression that he's pioneering testing for small fiber neuropathy and other neurological manifestations in lyme and getting IVIG covered on insurance, which would be a milestone. I assume the testing he's doing is all necessary to document neurological damage as well as improvement. That's my assumption but no firsthand knowledge. As for grants for studies, maybe it's not that easy to get a huge grant like that for such a controversial disease. I am glad he's doing this because I know IVIG helped me and I had no proof except my subjective feeling, and I know it has helped ArtistDi, who was previously on low dose steroids for the autoimmune aspect. If he can help other lymies eventually get IVIG on insurance that would be a big step forward. IMO.
Posts: 2276 | From united states | Registered: Jun 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It would be great if he could get it covered by insurance. But if he is testing only to document for research, then it should not be his current patients paying for his future patients. That's what it sounded like in your first post, which is what I was checking.
If the patien needs the tests, then the patient should pay. If the patient doesn't need it, then he cannot ask the patient to pay for it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Aniek, I said my impression was he was documenting the effects. That's from reading what others say. I don't know why you assumed that might mean he was running useless tests at patients' expense. I'm assuming that the tests are a way of documenting improvement, that convinces insurance this is valid. ArtistDi was able to get her IVIG on insurance because of his original testing. The testing is very expensive so who knows if companies will ever pony up for it but the fact is, it's *cheaper* than the cost of IVIG over time.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Yes, I am one person who has had a very postive experience with Dr.Y. After seeing almost 11 neurologists for nerve damage caused by Lyme and co-infections and being told that I was either crazy or depressed or even laughed at, he was the only one would knew what tests to order to find out what was actally going on with me. They did find out that I do have severe abnormalties and I am now finally being treated for them. Never did he say that he was a Lyme specialist and that I would neeed one if I had an active infcetion. The tests are expensive as they are done by MD's and also use quite a bit of lab time as well. He never suggested that IVGG would be a cure all in any way to me. I was treated with kindness and respect and he was very thourough as well. He is difficult to reach by phone but being the head of his depts. in 2 huge NY hospitals , I doubt that he even receives all his non-emergency calls. After so many vists to horrific doctors , I feel that he knows what he is talking about in regards to autoimumme problems such as mine and truly does care. Because of him , I am finally getting treatment.
-------------------- georgi Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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quote:Originally posted by Tincup: why do you keep going to someone and paying for treatments you don't think help you... especially if you aren't seeing results that you want and are so unhappy about it all?
There are other doctors with other protocols that can be your doctor....
He's not on MY list. He's not an LLMD, as someone said.
When you have a doctor that is not working out... CHANGE.
Hope you find someone else who can get you well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks Georgi, I've gotta keep things fair and balanced. Anyone who treats Lyme long term is on my list, but the patients are warned with patient reports. Dr. Y had nothing but good reports up until the last 3 days, now he has like 5 negatives! So, it's important to get all perspectives if they exist.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by Lynn Frie: I just dont like the idea of a guy taking all my money and then not signing my SS papers. I'm poor because of him, and he wants to charge me to sign his name. And, cutting off my treatment because of some tiny problem with my nursing company? This goes being basic bedside manner and just dealing with a dr being a jerk.
IVIG is an expensive treatment. If you consented to receiving this treatment from him, he is not "taking your money." You say you are poor because of him? I think you mean you are poor because of the expensive treatments you consented to take for your condition. It would be more fair to say that you maybe didn't fully understand the cost that would be involved with your treatment.
Saying he is a jerk because he refused to sign a paper.... well as a former medical professional I totally understand why this happens. I wouldn't sign a paper either if I didn't agree with what was written. You didn't specify what the nursing agency forgot to sign - was it documentation of a disability or a physical report? If a nursing agency failed to document something or have a signature verifying the information written was from them, I wouldn't sign as a physician either. Sorry. If you think he's a jerk you need to go someplace else where you feel you make progress and have a better fit with the personality.
Paper trails and documentation are very, very important in this day when people are litigation happy. He sounds like a smart doc.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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posted
I saw Dr. Y for an EMG study after my insurance co had denied me treatment for CIDP ( an autoimmune neurodegenerative disease often assoiciated with Lyme and coinfections).
Dr Y was compassionate and thorough in his exam and EMG study. I received the results in hand at the ned of the appt. Dr. Y went to bat for me against my insurance co with my referring neuro.
I received IVIG treatment for 10 months and have become a member of the land of the living once again.
I am still healing, yet my insurance co in their wisdom has decided to terminate the ivig. If I need Dr. Y's expertise again I will consult him.
I'm sorry you have had such a difficult time finding wellness. I pray things will improve for you.
Posts: 663 | From NH USA | Registered: Sep 2004
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks for the positive note.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I forgot to mention that Dy.Y also went to bat for me with the insurance company and I did not have to do a thing. He also sent me all the reports from all the tests. I find him to be one of the most compassionate doctors that I have gone to esp for a neurologist, many of them are brutal.
-------------------- georgi Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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