posted
Hi, my rheumotologist recommended John's hopkins....still doesn't think this is Lyme's. Does believe whatever this is is from Lyme's, though. Has anyone gone there?
Posts: 16 | From Wethersfield,CT | Registered: Sep 2010
| IP: Logged |
posted
Do a search on this forum for previous posts on this subject. Hopkins is the last place anyone with lyme should go, and your rheumatologist is amazingly uninformed for a state with so many lyme cases. Fire him and contact support groups to find a good lyme doc.
If you go there, you will be told that you never had lyme or had it and are cured, or best case scenario, they give you a short inadequate course of antibiotics. If you want to waste time and money, that is a good place to do it. How long have you had symptoms?
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You are CRAZY to go there!!!
I'm in Wethersfield too ...will PM you list of CT LLMDs.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.
LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.
ILADS = International Lyme and Associated Diseases Society
TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.
STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.
Lyme is just one of many chronic stealth infections.
==========================
You will NOT receive the medical care you need at JH if this is even remotely related to any tick-borne or even other chronic stealth infection.
I investigated going to JH just for a surgery on my inner ear that they do better than any other place in the world but then I found out that they not only know nothing about the complexities of chronic neuro-lyme, they are very loud cheerleaders against its very existence. And exist, and persist, it does.
I would not have felt safe there with the surgery because they would have no one on staff who was even familiar with chronic lyme and if that had flared during or after surgery, I could be in very serious shape with no lyme expert.
Now, there is one short, lone article from one doctor at JH who did speak to longer treatment, chronic lyme - but the official stance of JH is that lyme is no big deal at all. And there are no doctors who treat it there. None. None who are educated enough to even know how to properly treat it.
But, that is pretty much par for the course. LLMDs are very scarce. Many states have zero. Some people have to travel hundreds or thousands of miles - or figure this all out on their own piecing bits of help together. And that usually does not work out very well.
None of this is taught in medical schools. Oh, it may get ten minutes' of time, in passing, but it's seen as no big deal when it is far from that.
You are in a region that has choices of LLMDs (although it is rare to find one who insurance covers). Please consult with one. Lyme, or an chronic illness also requires a tremendous amount of focused self-care by the patient. Most LLMDs can guide you in that.
By the way, lyme does not have an "s" on the end. If your reheumatolgist is talking about "lyme's" it further shows he's not studied it. Lyme is NEVER written about in the plural.
He is not correct at all about post-lyme syndrome. Chronic lyme is an ongoing infection that needed to be treated as it is: an infection.
Now, that is not to say that lyme (or other tick-borne infections) can't cause permanent damage. They can. They do. However, for the majority of patients who were under-treated or not treated at all, with adequate treatment, many long-standing symptoms can resolve.
See an ILADS-educated LLMD for proper diagnostics. Because so many doctors are so very ignorant about lyme, we have to get educated about neuroborreliosis.
We stress "ILADS-educated" as that professional group of doctors has set the barre with the quality of study. Not all LLMDs who are "ILADS-educated" treat exactly the same but they all know the science of the spirochete and the science of all the other infections that often go along with lyme.
Also keep in mind that with the complexity of lyme and the various other infections, no two lyme patients are exactly the same. You need individualized care. -
[ 09-14-2010, 02:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
============================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
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:
** 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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- And the same holds true for MAYO Clinic. They are very ignorant about lyme and have ruined many a patient's life by that ignorance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
onbam
Unregistered
posted
They're a big part of the reason there is chronic Lyme. Will PM.
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "They're a big part of the reason there IS chronic Lyme"
So eloquently put. Sadly, so accurate. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Waste of money... waste of time.
Plus more stress.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I went to them and told the doc all my symptoms. He thought maybe I had a brain tumor. Didn't have any testing or treatment to suggest. Just said to get off my hormone replacement and come back after I did.
Left there and went to a different endocrinologist in private practice 2 weeks later. I told this doc all the same things. He said, "I think you have lyme disease or fibromyalgia."
He tested me for lyme and called me 2 days later and told me that's what I had.
So, forget Hopkins. I read an article by a doctor there about 2 years ago. He said they really don't like to get any lyme patients because lyme is a controversial disease. They just want to skip it.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I went to John's Hopkins too ! Total waste of time they DO NOT BELIEVE IN LYME !!!!!
Buyer Beware !!!
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Agree.......a total waste of your time and money.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Yes, do not waste your money. They are unable to diagnose lyme or other infections.They will diagnose you with a brain tumor or with strokes or anxiety. After the many MRIs you will have a gadolinium toxicity and kidney disease.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
posted
Thank you to all who replied. I will have to rethink going there. Thank you again!
Posts: 16 | From Wethersfield,CT | Registered: Sep 2010
| IP: Logged |
posted
Thank you all who responded....I am rethinking all this. I trust all your input more than the docs.
Posts: 16 | From Wethersfield,CT | Registered: Sep 2010
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
My mom worked at Hopkins and NIH. She thinks I'm crazy and a hypocondriac (spell??). Enough said.
posted
Johns Hopkins is a great Medical institution for many conditions- not to mention they have fantastic teaching facities. However, lyme disease and other TBI are diseases completely not within the knowledgebase/ scope of care for treatment.
Hopkins infectious disease (ID) department only follows the CDC's criteria to diagnose and treat Lyme.
That's just my 2 cents.
-------------------- Bullsye rash: 1994, tx w/ ABT, Symptomatic:1999 Hospitalization: 2004 Equivocol results (specialy lab) resulting in chronic use of ABT, herbs, etc ever since. Severity of symptoms continue to worsen intermittingly. Posts: 140 | From maryland | Registered: Oct 2006
| IP: Logged |
posted
i meant it as a joke but didnnnnnt come out right][[] when i posted the link noone was dead] thats why i removed iit
Posts: 61 | From limbo | Registered: Nov 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic