I called for hubby a month ago and never heard from them. The day after my follow-up phone call I got a call back from the neurologist who runs the program saying that hubby was probably too sick to benefit from their program. This was a message on our answering machine and the doc did not call back the next day as promised to speak to us in person.
Needless to say we were both upset and thought the comment was somewhat ridiculous.
If the point of the program is to determine whether or not your symptoms are from Lyme or another tickborne disease or if something else is causing your symptoms -- what does it really matter how sick a person is if they can have blood drawn and are not afraid of doing things like MRI's or SPECT or PET scans.
I do know that there is also neurocognitive testing -- but again the point is to see how well you are actually functioning. And for the most part hubby does not have significant brain fog. Concentration and some other issues such as word recall and multitasking are probably not up to par but would not prevent him from completing the testing.
I am writing a memo to Time For Lyme who is a major supporter of the Columbia University Lyme and Tick-Borne Diseases Research Center to bring this to their attention.
I am getting tired of getting the run around from not just mainstream docs but also the LLMD's who are supposed to be on our side and trying to help.
I know that the program does not offer treatment -- only diagnosis -- which many people think is a big downfall. But after you have been to a few LLMD's you start getting comments like -- you have already been tested for everything and then there are other docs who are just not that into testing. Sometimes it is a good idea to back up and get an objective opinion from an expert who is new to the case. That is what I thought this program was for.
If anyone else has also been turned down because they were told they were too sick -- please send me an email at the address below.
Seibertneurolyme (at) yahoo.com
Thanks.
Bea Seibert
P.S. Sometimes it seems like anything having to do with New York is a jinx where hubby is concerned.
Posted by sparkle7 (Member # 10397) on :
Seems like it's a study for particular types of things - ie: "for patients who have persistent neurologic or neuropsychiatric symptoms that have been attributed to a tick-borne illness". Your husband may have too many other complications.
I'm not sure if it's for a particular study but it is a university. They may be collecting data for some purpose. It may not be just a place to get a free second opinion.
Sorry Bea - I know you are really trying hard.
Posted by seibertneurolyme (Member # 6416) on :
Sparkle,
Hubby's symptoms are primarily neurological (tremors, myoclonus, seizure-like episodes and dystonia) and gastrointestinal (nausea and vomiting). Until the fevers started with aggressive babesia treatment he had few other symptoms.
He has no other underlying illnesses and his routine bloodwork actually looks pretty good except for being slightly anemic.
And the 2nd opinion is not free -- tests are either paid for by the patient or their insurance. There may possibly be some experimental testing done but for the most part they use IGeneX and other well-known specialized labs as far as I know.
Posted by seekhelp (Member # 15067) on :
I sure wish they'd look at me! I can't afford much more though unfortunately. Posted by momindeep (Member # 7618) on :
"Too sick to benefit from the program" is a ridiculous statement...I agree. So sorry...sounds like a runaround. You'd think that they are used to getting the hard cases...kinda like that is what they are there for.
I wouldn't give up if you are up to the frustration. I hope it works out for you both very much.
Sue
Posted by stork (Member # 24167) on :
Had an appointment with them. Found out it was going to be $3500. Immediately cancelled appointment with them.
Might be worth it. But what if they provide you with a neuro-cog benchmark and then essentially just tell you to keep on treating like you've been doing? I'm not sure they could ever offer substantial clinical breakthroughs unless you've been treating with docs who've given poor diagnoses/treatments.
Posted by seibertneurolyme (Member # 6416) on :
Stork,
Thanks for the info.
Hubby did have a pretty thorough neuro eval by an LLMD neuro in Connecticut back in August of 2010. But unfortunately the notes are handwritten and pretty unreadable -- the doc fired his transcription service and has since moved to California -- may be splitting time between two offices but is pretty unreachable.
I put hubby back on seizure meds -- not sure what else to do. He had some episodes of loss of bowel and bladder control during his seizure-like episodes during this most recent hospitalization. But all the docs there were worried about was the fever and some unknown bacterial infection.
The more obstacles that seem to come up the madder hubby is getting and he has told me to ramp up his babesia treatment as much as we can given the meds we have available.
We are both pretty much in agreement that even if he has another fever episode of 103 or so that that does not require hospitalization. Maybe an ER visit but I can give him cool IV fluids at home and he can take tylenol or whatever outside of the hospital. And we do finally have orders again to do routine CBC's and metabolic panels on a weekly basis if needed.
The hospitals first reaction is to stop the babs treatment and give him lots of other IV antibiotics which don't seem to be doing much good and they always get his symptom control meds messed up and on some unworkable schedule which just makes him sicker.
IV antibiotics at mealtimes and while sleeping is just not very healing -- even if they were the right meds. And nausea meds in the middle of the night but not at mealtimes doesn't do much good either.
I just hope this last hospitalization did not scare off his new LLMD but communication has become an issue and it is not looking real good.
The truth is I am getting really tired of playing doctor, but you do what you have to do sometimes.
![[Frown]](frown.gif)