posted
I'm wondering who people think is the best of the best when it comes to treating lyme disease and company. Who seems to have the highest success rate based on patient testimonials?
Posts: 561 | From mass | Registered: Jul 2007
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sixgoofykids
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posted
IMO, Dr. H in ____, or Dr. K in WA.
Webmaster note: The doctor's city is not to be posted.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
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posted
Dr L in NY for Adults and Children Emergency Care (Dying patients do well with him)
Dr. J in CT for Children (Co-infections and Lyme, and recommends Hyperbaric Oxygen)
Dr H in NY for Aggressive Antibiotics, Alternative, Co-infection and Thorough testing. (The most well rounded I suspect)
Dr. J in NC for Aggressive IV in Adults
Dr. S. H in CA (Related to Nick H) Agressive Treatment
Dr. R (For psychiatric Lyme). His closest competitors are Dr F at Columbia and Dr. B in NJ
Different people need different things, some need intensive IV, some need Herbal, some need Alternative (IV Glut, Heavy Metal, Detox), some need Emergency Care, some need Co-infection Care. So one doctor doesn't really do the job for everyone, but these are the best of the best.
[ 07. August 2008, 02:23 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
METALLlC BLUE
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posted
Yes, he's aggressive, but I would say Dr. J specilizes in aggressive IV, so I listed him instead. Dr. H is also close with Dr. Burrascano, and he recommended his patients see Dr. H when he retired.
Like you, I've met Dr. H on a number of occasions and I've heard him lecture. He is extremely competent. He's quite far left in regards to Mainstream treatment. I would say he covers "everything."
-------------------- 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.
METALLlC BLUE
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Member # 6628
posted
Here is the information you requested on Dr H in CA
Notes: One patient reports she heard he is very competent as well, and knowledgeable about Lyme disease. "Dr H, is a board-certified family practitioner. He is a member of the International Lyme and Associated Diseases Society (ILADS) and has extensive experience in Lyme Disease, Urgent Care and International Medicine.
Patient Report: "After suffering from misdiagnoses for almost 20 years, Dr. H found the corrects DXs & has put me on a path to health. Altho' still sick, I am far better than I have ever been in the past 20 years. He also DXd my son's illnesses that began at birth (17 years ago) & he is almost well now. Dr. H is also wonderful with his bedside manner, esp. with my teenager!!
Patient Report: "This doctor is very knowledgeable about tick-borne infections. Communications outside of appointment times need improvement."
[10-31-06] Patient Report: "I have been going to Dr. H for about 3.5 years. He is a great LLMD and is open to alternative therapies. I have solely been doing rife for about the last 2 years ( no antibiotics, but I recently started salt/C about 2 months ago). Dr. H is understanding that I don't want to go the antibiotic route anymore and is accepting of other therapies such as rife, although he doesn't promote it as he could get in great trouble. He continues to prescribe me supplements such as glutathione and order tests such as CD57 to monitor my progress even though I am not on antibiotics. I think he is a great LLMD and highly recommend him."
[05-25-08] Patient Report: "he is great. He has always been there for me, including in court. He is up to date on the latest information. His dad is Dr. N. H. who is a part of ILADS. I think he is the treasurer. Dr. Burrascano (my doc and he are buddies) I think it helps when physicians know each other."
[08-07-08]Patient Report: "He's really good, if you're considering a new LLMD. Aggressive, intuitive, treats by symptoms not tests. He has a PA trained up now working for him who is good too. Dr. H oversees.
[ 09. August 2008, 04:48 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Oh, I agree with your assessment, it's just from your first post it sounded like Dr. H doesn't prescribe abx ... and he does. [Smile] So many people here PM me asking if he makes you go on herbs after a period of months, and he does not. So, I just wanted to clarify that he does get aggressive with abx.
I'll edit my post in order to clarify.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I also saw that Metallic posted about an emergency lyme doctor...I thought those didn't exist. Is there a hospital that takes lyme patients?
Dr. L in NY is the most specialized in providing personal care, and often will see patients weekly or even daily. He has been known to cry in rooms while patients are dying, when he couldn't convince insurance companies or others to come to the patients aid. He has saved many lives when no one else could, but has also lost a lot, because they are so ill when they end up in his care.
There are other emergency room or emergency care LLMD's. As you see with Dr. H in CA. He is experienced in urgent care.
Dr. F in Oregon specializes in Emergency Care.
Dr. S in PA specializes in Emergency care
Dr. W in Utah specializes in Emergency care
[ 09. August 2008, 04:49 PM: Message edited by: METALLlC BLUE ]
-------------------- 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
Interesting that I don't see Dr. R in NY mentioned. For some reason I thought he was considered one of the best...Any reasons??
Posts: 561 | From mass | Registered: Jul 2007
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METALLlC BLUE
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posted
Sorry, I forgot to list him.
Dr. R is the best psychiatrist besides Dr. B in NJ for treating Neurocognitive, and Psychiatric Lyme Disease. They both have a broad spectrum in treating the entire person, but they understand the deep specifics of the psychiatric aspect.
I'll list them higher up.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
Anyone who wishes to PM me their "Patient report" is welcome to. The reports are used on the Lyme List to give patients a window into the world that other patients have experienced. You can include cost, insurance, staff, treatments -- whatever you want. The report can be negative (You can bash them to hell if you want) or they can be as positive as you like -- just be honest."
I don't alter the context of any of the reports, only the grammar and I sometimes re-write if incorrect words are used, or if words are missing in a sentence.
At any rate, it's anonymous, and the lists are only given to patients or people connected to someone in need after being evaluated by me for authenticity.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I have a Dr. W in Washington who is a Psychiatrist, but have no patient reports. She is the only one on my list for Psychiatrist. If this isn't her, PM me to let me know who it is.
[ 09. August 2008, 04:49 PM: Message edited by: METALLlC BLUE ]
-------------------- 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 am in WA State and would be interested in knowing who the psychiatrist, Dr. W is. If anyone knows their full name, could you please PM it to me? Thanks.
Posts: 566 | From West Coast | Registered: May 2008
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bettyg
Unregistered
posted
TICKSUCK,
check my profile for wash. psychiatrist info i just sent you...
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm surprised no one has mentioned Dr. Cowden...
I would check him out if I had a big budget.
I think it's OK that I mentioned his whole name - if it's not, PM me & I'll edit it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
curious to which dr h everyone is talking about-
dr h in cali or dr h in ny state? i assume dr h in ny state is the one that is close with the famous, now retired dr b...also from ny state.
-------------------- do your best to educate the rest because 9 out of 10 doctors don't know jack about tick borne illnesses Posts: 437 | From shawangunk mountains, ny | Registered: May 2008
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quote:Originally posted by METALLlC BLUE: I have a Dr. W in Seattle who is a Psychiatrist, but have no patient reports. She is the only one on my list for Psychiatrist. If this isn't her, PM me to let me know who it is.
Sounds like you have the right Dr. W in the Seattle area. She's pretty awesome.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
I've seen 3 different LLMDs in 3 different states.
I started out with Dr. J in NC, who was extremely competent and a pleasure to work with. Dr. J took on a mess when he began treating me (I have recurring meningitis and encephalitis due to the Lyme.) His medical board proceedings left me out on my rump, and he sent me to Dr. B in VA.
She (Dr. B) was a delight to work with, and caught many things that no other doctor would have ever thought to look for. (good ol' Lyme symptoms were masking other problems)
I moved across the country and ended up with Dr. S.H. in ___. I think I found him at the best possible time. Right after our initial consult, I got extremely sick, and we've been trying to come out of the muck for almost a year. He is very easy to work with and a really good listener. He's been very inspirational.
I also see Dr. W (the LL psychiatrist) in Washington (on the recommendation of Dr. H). She is very thorough and a pleasure to work with.
If anyone has any questions, feel free to PM me.
Webmaster Note: The doctor's city is not to be posted.
posted
I see G.S., a nurse practioner under Dr. S in California. I couldnt' get into see Dr. S but was so ill I agreed to see the Nurse Practioner under him. She took me from being very very ill to 90% back in two years.
She's been treating lyme for over 10 years, formerly worked in Texas under a Lyme Dr. there as well.
She's very knowledgable, and a lyme victim herself. I would highly recommend her.
I saw Dr. H in ____ and when he heard that I was seeing her, he talked me into staying with her. He said she's as good as it get's.
She's very well known throughout the lyme community and is a frequent speaker at lyme conferences.
Barb
Webmaster Note: The doctor's city is not to be posted.
[ 20. August 2008, 08:54 PM: Message edited by: Jenifer ]
Posts: 281 | From san francisco | Registered: Jun 2006
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METALLlC BLUE
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Member # 6628
posted
AP, I have positive reports on her. It's good news for patients in VA. I want to second Meg on Dr. F in Louisiana. His book is excellent based on a patient report of someone I'm close with. I've researched him quite a bit, and he's extremely well versed in Babesia, as well as Lyme and viral aspects of co-infections.
For patients in Texas, I would highly recommend him if they don't mind the drive. There are other doctors of course in TX that I've managed to sort through. I had to make a lot of phone calls, but it's surprising that there are some. One in particular which ****ed me off was Dr. G -- she totally abandoned patients with Lyme. She's a fool in my opinion.
[ 09. August 2008, 04:50 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Meg, the female Dr. M? If yes, she's excellent. She was trained by Dr. Jones in Connecticut, and Dr. H in NY. (Jones gave permission to use his name publically).
-- Michael
-------------------- 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.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
A second on Dr. K. in WA., esp for the holistic-minded. I got well largely due to following his protocols that he posts onlne.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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METALLlC BLUE
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posted
These are all wonderful physicians mentioned. Dr. K is extremely well versed in some extremely cutting edge holistic aspects of Lyme Disease. He is not only competent with the entire complex of the disease (As well as co-infections), but is very good at working with patients on a level of compassion and support.
-------------------- 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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Has anyone seen Dr. K in Connecticut - Lyme Neurologist? Am thinking about going to him.
Posts: 144 | From Connecticut | Registered: Sep 2006
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quote:Originally posted by METALLlC BLUE: AP, you mean B in ____?
Her office in ____ was closed. When I left last October, she was practicing out of ____. But, yeah she's good news for that area. I began the Hampton Roads support group, and they've really grown. That area has a lot of support and is kind of in the center of a lot of Lyme docs and activity
Webmaster Note: The doctor's city is not to be posted.
posted
You are not the only one that has a difficult time dealing with the staff there. Many people bypass the staff there whenever possible. I think you are only helping this doctors practice by bringing up these issues so they can be improved on.
One friend called there to make a first time appointment and no one called her back for 10 days and in the mean time because she suspected she might have Lyme and she was wanting to be seen she went else where. Can anyone blame her? It turns out she does have LD and babesia. Because she did not like her first encounter with not getting her phone call returned promptly she goes to another LLMD but her first choice was Dr. H.
Why did they hire a marketing person and why do they have sale days when they might be losing business because A) No one answers the phone there often and B) It can be hard to get phone calls returned promptly at times and other things done correctly and in a timely manner.
I like being seen there and think the MD is wonderful. They need to have someone like a receptionist that actually answers the phone rather then callers reaching voice mail most of the time. It does get very frustrating especially for lymies.
If you decide to leave his practice which is sad because he is a good MD you could write him a letter and tell him why you left.
Others have mentioned to me that they are frustrated with the staff there so you are not just imagining things. No practice is 100% perfect so maybe just try and work around the problems you are encountering there and see how that goes and if it gets too frustrating then go elsewhere.
You could talk to the MD next time you see him and voice your concerns.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Yes. I am aware Dr. H needs office help as I am sure he is also.
I have seen him have this problem before at an old office and it eventually got worked out and he had a good staff.
Wishing I was well enough to help him out right now.
But, have confidence it will be taken care of as soon as he is able to find good help.
I think the problem right now is not enough help for the work load. The people I have talked to were good.
WE all know how difficult it is to find good help
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Angelica
Unregistered
posted
It has been an ongoing problem even when the office was located elsewhere. The other staff at the last location were even worse.
If the situation was taken care of it would make it easier for everyone including the MD.
METALLlC BLUE
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posted
I see Dr. D in Massachusetts. I saw his N.P. awhile back, and she was a total ****. Here is what I wrote Dr. D.
quote: Your NP was far from helpful in addressing my concerns and quite honestly, I don't like her. I don't mind seeing her for quick check-ups, but when I have serious reservations or questions and I've traveled to get a thorough answer which can't be had by e-mail, I don't want to be processed, filed, indexed, stamped, and then rushed out of the appointment with insufficient answers and be told by her that you can't help me with my jury duty disability notes.
I also don't appreciate when patients that I've brought to the office for help ask for me to be present during their appointments for support, and then I'm told to wait outside by her I realize certain aspects of appointments such as examination and testing ought be performed privately, but if a patient who is all alone -- which is often the case with many Chronic Lyme patients -- requests that I be present during other parts, they ought to be able to have me present. They shouldn't have to argue the reasons they want me present in order to appease anyone.
As I left your office and walked down the hall with you, you asked why you were seeing cases that your NP had already seen? In my opinion it's for the reasons I've already listed. It's because I think she rushes patients in and out of their appointments. I feel she is detached and difficult to trust, but especially difficult to work with. I feel like I'm a number, another case interfering and punctuating a precious moment in her day, not a person in need. I feel like a human being when I see you, that's the difference. My questions actually get an answer from you instead of impatience and indifference which is what I feel I get from her. This is my opinion, and I suspect I am not alone, though I hope I am. It is my hope by confronting this that you'll be aware of this possible shortcoming in the care other patients may be receiving.
His response was:
quote: Thanks for your note; I appreciate your being frank, and appreciate the need to talk with me. I don't think it's unreasonable to have a patient be first interviewed by the doctor (or NP), then have whoever else sit in; each one of us does it a little differently. Don't be offended. Also, I'm happy to see you myself at all future appts.
Dr D
So no, don't be afraid to tell people what you think. It's not fun, but it gets the job done when you do it right.
[ 09. August 2008, 04:52 PM: Message edited by: METALLlC BLUE ]
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Apparently even telling the physician doesn't always help. To me the office-staff are very important components of the process.
I'm not a very pleasant person to **** off when it comes to such important issues. I've managed to get multiple patients together in the past, to write specific doctors in order to force them to change a particular matter.
When a lot of people gather on an issue, that too can press changes.
-------------------- 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.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Regarding Dr SH in CA and his staff: they recently had a nurse resignation and are getting 200 calls a DAY from patients and people wanting to be seen; Dr H told me this at his last visit. He does not come here to Lymenet so will not be reading this. This is why the response is so pitiful.
I think it would be good if people mention that the office staff chitchats and are non-responsive while he hustles at their appts. I think i will. He will appreciate it.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Am relatively new to this board - any reason why my question about "Dr. K in Connecticut" was deleted? Would like to know if anyone has seen him and has had good or bad experiences. Thanks!
Posts: 144 | From Connecticut | Registered: Sep 2006
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METALLlC BLUE
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posted
quote: Am relatively new to this board - any reason why my question about "Dr. K in Connecticut" was deleted? Would like to know if anyone has seen him and has had good or bad experiences. Thanks!
I've spoken to a number of people about Dr. K but have only one patient report that I recorded. Dr. K does believe Chronic Infection exists, but he's a bit quick to refuse long-term antibiotics in-place of IVIG treatment or other varients of immune modulation to improve the outcome of neurological disease.
Dr. K does prescribe long term antibiotics, but he's quite conservative in respect to how he approaches the illness. I think he's a good doctor, and a fair doctor about how he treats patients, but beyond that I'm skeptical of recommending him to anyone unless they have serious Multiple Sclerosis, ALS, or other neurological conditions which require a Lyme "Friendly -- or semi-lyme literate" Neurologist.
Perhaps other patient reports will follow and I'll have more information to give.
[06-27-08] Patient Report: "We have seen Dr. K in CT twice now, and do like him. He seems a bit quick to suggest auto-immunity, but when pressed he stressed it is an infection-driven auto-immunity (more like a transfection that the research is showing). Despite that, he tests for any auto-immune markers along with thoroughly testing for any active disease present. He does treat symptoms if need be. He is familiar with and treats movement disturbances caused by Lyme."
-------------------- 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.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
these complaints/concerns are about dr h in Ca, right?
also, something for everyone to think about.
i know we are not supposed to list dr full names on here, but if anyone is actually on this board looking for drs names using their first inital, the state they're in, and the fact that they treat lyme is really all someone needs to figure out who we are all talking about.
not saying we should start giving away dr's full names, but honestly, what purpose does it serve?
a monkey could figure it out
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
While I am quite appreciative to all who have taken on the work of helping others to find appropriate physicians.
I honestly feel that the information contained in this post is really harming the goal of what we have tried to do here for so long- that being to protect treating physicians.
There is no reason why this detailed information can't be shared privately through email or the PM system.
...
Terms and Conditions of Use:
5. You also agree not to post the last name, or the first name, of any person that treats Lyme disease. Instead, please use the first initial of the last name only, with the state, but not city. For example, Dr. B. in NY. This person's contact information should not be displayed on LymeNet. However, you may email this information. This is to protect those that treat Lyme and the Lyme community.
Posts: 7052 | From Colorado | Registered: Mar 2003
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quote:Originally posted by METALLlC BLUE: One in particular which ****ed me off was Dr. G -- she totally abandoned patients with Lyme. She's a fool in my opinion. [/QB]
I never heard of a Dr G in TX...??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by Melanie Reber: [QB] While I am quite appreciative to all who have taken on the work of helping others to find appropriate physicians.
I honestly feel that the information contained in this post is really harming the goal of what we have tried to do here for so long- that being to protect treating physicians.
There is no reason why this detailed information can't be shared privately through email or the PM system.
...
Terms and Conditions of Use:
5. You also agree not to post the last name, or the first name, of any person that treats Lyme disease. Instead, please use the first initial of the last name only, with the state, but not city. For example, Dr. B. in NY. This person's contact information should not be displayed on LymeNet. However, you may email this information. This is to protect those that treat Lyme and the Lyme community.
Actually, I agree with Melanie!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
if they really are using this stuff to possibly indite llmds, this should be deleted.
altho like i said, they can just as easily find them by their first initial and state...
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
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