I was told by my primary care physician today that I should go to a major hospital to try and diagnose what I have. Something like Mayo clinic that is known for diagnosing difficult cases. I am well aware of the stories about Mayo and Lyme. Is that how it is at every major institution? I might, but don't really think I have late stage Lyme but I want to go to a place that will at least consider it. I want someone to look at ALL my symptoms and diagnose based on ALL the information that is out there. I just want the greatest chance at an answer. So does anyone have any suggestions? Johns Hopkins or something like that? I will travel pretty much anywhere within the US.
Posted by Keebler (Member # 12673) on :
- You posted for a LLMD on 23 August. Were you not able to find one with the PMs sent?
Johns Hopkins is good for many things but terrible regarding lyme. No major medical center is well educated about lyme as they all follow the (in my opinion) "criminally negligent" IDSA and CDC guidelines both for diagnosis and for treatment.
Find a LLMD. And ILADS-educated LLMD. Links below discuss the importance of that. Your area support groups may be able to offer suggestions. Links to follow. -
Posted by Keebler (Member # 12673) on :
- As extensive as this list is, it is just about half of what I would consider a good introductory packet. Tick-borne disease is very complex. These stepping-stones offer anyone new to all this a place to begin, step by step - taking a good breath at every turn.
From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Discusses differences in the methods of the IDSA from those of ILADS
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
PHA - Public Health Alert - an on-line newspaper devoted to education in the field of lyme and tick-borne disease.
===============================
STATE - Many states have their own Lyme disease association, network or group of a similar title. A Google search can often find that. Be sure they are ILADS-minded, though.
Find LOCAL LYME SUPPORT GROUP -
Posted by Keebler (Member # 12673) on :
- Not everything thought to be lyme is lyme. And, many other infections also travel with lyme so for those who do have lyme, they often also have other "stealth" infections of which most doctors are not familiar..
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .
LymeMD Blog: 3/4 of the way down: Wednesday, March 3, 2010
BABESIA, Babesiosis, blood parasites, malaria like organisms, piroplasms-protozoa: all refer to the same Lyme associated co-infection -
Posted by seekhelp (Member # 15067) on :
TinCup HATES Hopkins too!! Calls it ho-ho Hopkins for some reason.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LS: [QB] Is that how it is at every major institution?
YES!! NO major hospital will consider Lyme. Period. And if they got smart and decided to test for it, it would VERY likely come back negative even if you have it.
Why? Because they will use standard inferior labs .. at least inferior at looking for Lyme and coinfections. They won't even consider checking for coinfections.
Find a GOOD LLMD and he/she will test you for other possibilities.
At least find an LLMD who can test you through Igenex Lab for lyme and coinfections and go from there.
And YES, Hopkins has the same reputation as Mayo when it comes to lyme.. maybe even worse.
Posted by 2young2die (Member # 25434) on :
Don't bother with Yale either. They told me I had ALS and left me to rot!
Posted by tsilverman21 (Member # 24939) on :
I also do not recomend Hopkins. I went to there ER after suffering for over a year and getting no where. ER says yes I have Lyme and want me to see 3 doctors there. The Infectious Diasese Dr said for me to keep seeing my shrink. The other was the nuro and he looked at all charts had me walk and said he agreed with the other. I am not seeing the 3rd for I lucked out and got thru a friend to one of the best LLMD's. and have now started IV and antibiotics. I go back next week to see all my results. So please don't waist your time and find a good LLMD. My thanks are to all the people on this site who have informed a guided my by reading nightley. Bless you all.