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» LymeNet Flash » Questions and Discussion » Medical Questions » going to John's Hopkins

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Author Topic: going to John's Hopkins
neary.robin
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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 | Report this post to a Moderator
lou
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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?

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dmc
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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 | Report this post to a Moderator
Lymetoo
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NO WAY! Don't do it!!

moving to Medical Questions....

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
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 | Report this post to a Moderator
Keebler
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-
www.ilads.org

ILADS - be sure to read all the articles in "Articles and Presentions" Get the DVDs of ILADS of past seminars.

=================

http://www.lymediseaseassociation.org/

Lyme Disease ASSOCIATION

You can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.

This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.

-================

http://cassia.org/checklist.htm

Symptom checklist for lyme.

=================

http://cassia.org/essay.htm

When to Suspect Lyme - by John D. Bleiweiss, M.D.

=================

http://www.lymeinfo.net/lymefiles.html

LYME DISEASE MEDICAL LITERATURE SUMMARIES

=================

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

=========================

This explains WHY you need an ILADS doctor:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

======================

www.jneuroinflammation.com/content/5/1/40

http://www.jneuroinflammation.com/content/5/1/40/abstract

Journal of Neuroinflammation 2008, 5:40

25 September, 2008

Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis

======================

http://www.underourskin.com

Documentary: UNDER OUR SKIN (you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.)

========================

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

============================

It is best to see a LLMD in person first for a physical exam, history and symptom assessment. Then the LLMD can guide you to the best tests.

www.canlyme.com/seronegreasons.html

(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:

www.igenex.com

IGENEX

-----
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.

================================

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

=================================

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:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

===============================

Find your local SUPPORT GROUP for help in finding a doctor, etc.

www.lymenet.org/SupportGroups/UnitedStates

==================================

Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2

===================================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605

MAKING THE MOST OF YOUR LLMD VISIT
-

[ 09-14-2010, 02:34 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

------------
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** 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.

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)- by KS, MD

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

================================

www.townsendletter.com/FebMar2006/lyme0206.htm

February/March 2006

BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Tincup
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No No!!!

Run, run, run, don't walk away from Hopkins. Please!!!!!!

Anything but Ho Ho Hopkins!

[Eek!]

I'd rather shoot myself in the foot than go to Yale for Lyme.

I'd rather shoot myself in both feet than go to Hopkins!

[Eek!]

Have I made myself clear?

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20352 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Keebler
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-
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 | Report this post to a Moderator
onbam
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They're a big part of the reason there is chronic Lyme. Will PM.
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Keebler
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-
"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 | Report this post to a Moderator
Tincup
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Amen to that onbam!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Lymetoo
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neary.robin??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95327 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
canefan17
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Waste of money... waste of time.

Plus more stress.

Posts: 5394 | From Houston, Tx | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
TF
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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.

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daniella
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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...~

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Abxnomore
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Agree.......a total waste of your time and money.
Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
karenl
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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.

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neary.robin
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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 | Report this post to a Moderator
neary.robin
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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 | Report this post to a Moderator
littlebit27
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My mom worked at Hopkins and NIH. She thinks I'm crazy and a hypocondriac (spell??). Enough said.

--------------------
*Brittany Lyme Aware on FB*
http://littlebithaslyme.wordpress.com/

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maryland
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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.

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kitty9309
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quote:
Originally posted by tamboski:
http://www.theglobeandmail.com/news/world/americas/johns-hopkins-hospital-on-lockdown-after-doctor-shot/article1710221/

neary robin was this u

??? What do you mean by this? Yeah, someone shot a doctor beacuse his wife got sicker, but what does that have to do with the original poster?

Weird that you would post this!

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neary.robin
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I swear I was in bed all day!
Posts: 16 | From Wethersfield,CT | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
neary.robin
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how sad for the mom and shooter though!
Posts: 16 | From Wethersfield,CT | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
tamboski
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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 | Report this post to a Moderator
   

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