Hi all, I have a friend that is looking for an LLMD. She mentioned Dr. K a neurologist at Yale?! Am I off here in that Yale is a problem? A red flag went up for me when I saw that. Tell me if I am wrong here?
Thanks, Ann
Posted by Lymeorsomething (Member # 16359) on :
You may mean Dr. K in a neighboring community. This doc may have an affiliation with Yale.
The doc wasn't my fav but is well-regarded...probably better if you have clear neuro symptoms...
Posted by lakes592 (Member # 18905) on :
This is the note my friend sent:
Dr.K is a neurologist and is on Staff at Yale Medical. He is a specialist in Lyme Disease and has dedicated his life to hundreds or more patients with Lyme . One patient being the "Dali Lama" himself. A woman at the rink is a patient and gave me the same information as you did regarding how difficult it is to find a doctor who is "Lyme "Literate". She knows Dr. D and a few others. Dr. K apparently has a waiting room 2 hours deep because people come for all over to see him. It took 6 weeks for them the even call me back. His case load is huge and yes he is Lyme Literate...that's all he does. THis woman...Janis is her name...said that he sends his blood samples to 3 different Labs because he trusts very few of them.
Posted by Lymeorsomething (Member # 16359) on :
Well, I won't elaborate more here because it wouldn't be right, but I do feel that a patient can do much better.
Everyone thinks differently about docs so worth a shot if your friend is that interested.
Posted by Alana (Member # 14077) on :
Ditto lymeorsomething.
Posted by dmc (Member # 5102) on :
ditto
Posted by seibertneurolyme (Member # 6416) on :
Hubby saw Dr K back in 2003. He will make a clinical Lyme diagnosis but is not really up to date on coinfections in my opinion. His specialty is IV IgG -- hubby did not qualify for that based on bloodwork.
After his 2 months of IV Rocephin we were left in limbo partly due to insurance issues and also the doc was moving his practice at the time.
Anyway -- he is one of the few neurologists that know anything about lyme and tickborne diseases, but it would be better to find another LLMD for treatment in my opinion.
Not sure if the doc knows anything about SPECT scans or not -- they were not really in use for tickborne illnesses back then. The doc also is an epilepsy specialist I think.
Bea Seibert
Posted by hshbmom (Member # 9478) on :
Bea, do you think he'd be good for IVIG treatment if the patient qualifies, but it may be best to use a different LLMD to treat Lyme and coinfections?
Posted by hshbmom (Member # 9478) on :
Lymeorsomething, Alana, and dmc, would you please send a private message to Metallic Blue and give him some feedback on this doctor?
Bea, how does one qualify for IVIG treatment?
Posted by seibertneurolyme (Member # 6416) on :
hsbmom,
The most common way to qualify for IV IgG would be to be deficient in one of the IgG or IgA subclasses -- there are 4 or 5 different ones. Even with a low total white blood count hubby still was in range for each of the subclasses -- has been tested 3 different times I think.
Dr Y, neuro at NYU, also does IV IgG for lyme patients. He wanted to do 3 tests on hubby to see if he qualified -- we did not have the $6200 to do the tests.
His tests included a tilt table test, a special EMG/nerve conduction test and a special nerve biopsy using his patented test. Dr Y has written some of the insurance company guidelines for use of IV IgG -- the treatments would not be approved based on a lyme disease diagnosis but on some other diagnosis such as neuropathy (can't remember the exact term).
There are a few other docs who do prescribe IV IgG, but they have less experience and may not know all the insurance ins and outs needed to get it approved.
Of the 2 neuros listed I would pick Dr K over Dr Y -- would probably be a lot cheaper although nothing about IV IgG treatment is exactly cheap. Each treatment runs in the $5000 - $10,000 range and add doc appointments and bloodwork to that.
Bea Seibert
Posted by Lymeorsomething (Member # 16359) on :
I believe MB already knows about the perks and pitfalls of this doc...