Anyone have an ALS dx from Yale that turned out to be Lyme?
I was dxd last spring with ALS but did well on ceftriaxone for a year. I just lost my picc due to an infection and am losing ground.
I really hope Yale was wrong. Anyone have experience with lyme and Yale?
Posted by onbam (Member # 23758) on :
Yale is the heart of the Lyme coverup. Anything you hear from them needs to be questioned.
Posted by Beagle (Member # 29698) on :
Yes, onbam is right about Yale. I've read so many books in the last two months about the whole political (what I call) Lyme Fraud, that I don't remember the details but am sure Yale is one of our major enemies!
Beagle
Posted by lymegal23 (Member # 28573) on :
UGH during one of my many emergency room trips before my lyme diagnosis., I told one of the emergency room docs that I thought I had lyme disease. he looked right at me and told me "I am in very close work with people at Yale, and trust me what you have is not lyme. you dont have a rash or a fever"...
hhahahaha. he was a complete moron. and he was affiliated with yale.
so yes I agree with the other posts above me. the fact that you showed improvement with the ceftrexione says ALOT.
Posted by MaryinVT (Member # 19466) on :
Thanks for the info. If anyone has information on Dr. K at Yale, please let me offline. My wife has an appointment next week. I'd really appreciate it. -John
Posted by lululymemom (Member # 26405) on :
2young, can't you continue with the ceftriaxone intramuscularly?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by MaryinVT: Thanks for the info. If anyone has information on Dr. K at Yale, please let me offline. My wife has an appointment next week. I'd really appreciate it. -John [/QB]
Steere clear!!!
Seriously, it will be a waste of your time. Yale is one of the WORST at ignoring Lyme. They certainly will NOT treat long term if that is what your wife needs.
Not all Yale graduates are horrible, you can get a pretty good education there. I would say stay away from any infectious disease specialists from there, though.
Posted by seibertneurolyme (Member # 6416) on :
LymeToo & MaryinVT,
Dr K is one of the few LLMD neuro's. He is a big proponent of IV IgG. Does use IV Rocephin, but may be somewhat conservative. Also probably not the most up to date on coinfections.
But he should not really be classed with the other docs at Yale. Has his own private practice -- not in the hospital. Actually diagnosed hubby with Lyme clinically back in 2003.
Bea Seibert
Posted by Camp Other (Member # 29797) on :
lymegal23,
I think ER docs are uneducated about Lyme and other tickborne infections no matter where they are from. I've been in ERs in more than one state and they were generally clueless about Lyme and coinfections in general. I had to teach them how to spell "Babesiosis" and even had to tell a few ER doctors what it was.
I don't think it is a Yale thing alone (although Yale IDSA members who are doctors have been notoriously bad when dealing with Lyme patients) and it's possible that ER doc was unwittingly trying to offer reassurances, as if a degree from Yale was something impressive. He was wrong, of course...
I think all patients deserve to be treated with respect and that ER docs need to be educated about their patients' histories and believe them when told. It's the disbelief that is amazing, especially if you have the evidence to back up your history.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seibertneurolyme: LymeToo & MaryinVT,
Dr K is one of the few LLMD neuro's. He is a big proponent of IV IgG. Does use IV Rocephin, but may be somewhat conservative. Also probably not the most up to date on coinfections.
But he should not really be classed with the other docs at Yale. Has his own private practice -- not in the hospital. Actually diagnosed hubby with Lyme clinically back in 2003.
Bea Seibert [/QB]
OH..! Thank you, Bea! So what IS his connection with Yale? I was saying to steer clear of anyone AT YALE. So if he's not at Yale, that's a whole other ballgame, right?
Posted by Rumigirl (Member # 15091) on :
Bea is exactly right about Dr. K.
2young---you need to get a new line in ASAP and get back on rocephin! This time get a port; you will need it for a good long while, and a port will last you for years, if you take care of it well. Fight to get the port rx'd, if you have to. I did, and I'm glad I did.
If you get a line infection, they usually put a new line in right away to treat the line infection! How come they didn't?
Don't concentrate on the ALS dx. Concentrate on dealing with the cause! I'm sure that's easier said than done, but all the same, that's your job right now. You can do it.
Posted by 2young2die (Member # 25434) on :
Wow, I'm so glad to hear Yale isn't always right. It gives me hope!
Right now, I'm dealing with gastritis and diahrrea so I can't take any abx. I'm so weak without the ceftriaxone. I actually fell in the snow yesterday (lousy NE winter here) and couldn't get up. Luckily, my neighbor was passing by and pulled me out.
I plan to have a groshong installed asap. I can't wait to get back on the meds.
Posted by Lymetoo (Member # 743) on :
God Bless you, 2young.. hope you get the help you need!
Posted by Abxnomore (Member # 18936) on :
Bea is correct. Dr. K is not one of the yale no nothings. He is one an excellent LL neurologist and there are very few of them.
Posted by Tincup (Member # 5829) on :
Lymegal... you said the guy at Yale was a "complete moron".
Now that wasn't a nice thing to say.
True, no doubt, but not nice.
My question to you is..
Is he related to anyone at Ho Ho Hopkins, or Hold the Mayo clinic?
I ask because that is what they are normally referred to as when it comes to Lyme.
Yes, my advise would be to RUN, don't walk to your nearest exit if you wake from a coma and find yourself there.
Yale is the home to some of the worst of the worst. Just look at what they are doing to our dear Dr. J in CT... the man who is caring for our sick children in spite of their ugliness and hate.
It is sad how a few bad apples can REALLY spoil the whole bunch.
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