LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Speaking with ID doc tomorrow - Need concise information sources!

 - UBBFriend: Email this page to someone!    
Author Topic: Speaking with ID doc tomorrow - Need concise information sources!
Blackstone
LymeNet Contributor
Member # 9453

Icon 1 posted      Profile for Blackstone     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello everyone. Tomorrow I have a meeting set up with an "ID Doc". He's an infectious disease specialist who works at my local hospital and if I play my cards correctly, I may be able to help another physician who has been steered wrong by the IDSA's party line understand the plight of Lyme patients .

While he's not an ILADS doc, he seems to be somewhat more open minded than many and believes that "Somehow the disease has changed" over the years. He's seen increasing patients with Lyme, and symptoms such as bell's palsey and even Lyme and other co-infections found in spinal fluid. He is sure the disease has become more aggressive and it is harder for people to recover, according to a mutual colleague and very close friend that put us in touch (This person is an EXCELLENT general surgeon and wound care specialist, in Maryland, by the way. He does not treat for Lyme in any way, but he is quite Lyme "friendly")

Tomorrow's visit will be part personal consult and is "in the bag" so to speak - my insurance will not play ball with IVs of any sort without a physician who is connected to a legit hospital infusion center giving the "Ok", but I also have the chance to show him the error of the IDSA guidelines and other issues.

Sure, I can talk at length about say, cystic forms and Tindamax, but I need PROOF, provided in a concise manner and thus why I'd like to ask some of our more archival-minded posters for a hand.

I'd like some help in providing links to the sources (studies and more) that back up the following..
-Lyme treatment iself, ILADS protocols, multiple forms of Lyme (Cyst/L-form cell wall deficient), IGENEX testing versus regular testing evidence of continued presence even after IDSA antibiotics courses, and more. Pretty much anything that proves how difficult Lyme is to eradicate once it has a chance to get into the body, as well. The best, latest, well cited information possible.
- Attorney General Blumenthal and the case against Wormser, Steer and the rest of the guys who made up the IDSA's protocol, how they were paid off by the makers of the Lymerix vaccine, and the judgment of the case.
- Babesia/Bartonella and common co-infection info/overviews and studies
- "Odd" or less known co-infection studies such as CPN, Mycoplasma and more
- Viral issues, herpetic and otherwise, including recently discovered XMRV links

-The "GOOD" testing labs and WHY they are good. I'm pretty sure for instance, that he just uses Labcorps and Quest for everything. A list of comprehensive labs, their tests, and why the "normal" ones don't cut it for some things

I have pages and pages of bookmarks from all of the above, but I just thought someone here might have a more concise presentation that will save me from carrying in tomes and tomes of pages on the first visit. Just think about anything you'd show to a ID Doc to help illuminate him to why the guidelines he follows just aren't enough. Thanks!

Posts: 685 | From East coast, USA | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
I know you are coming from a good place but I am just so down on the idea that we have to educate doctors and bring them up to speed. I've shared much information with otherwise very nice and good doctors.

But, I have to say, they REALLY don't want this and it has even been used against me to show I'm some sort of gullible freak addicted to sharing mass market articles. I'm sure I can't refrain from posting a few links but, beware, when I've done this, they have just been put in my file. No one read them - at all.


I would simply direct him to the ILADS website and ask him to contact an ILADS member and read some of their articles, watch some of the DVDs of past seminars and then inquire about the education courses.

He needs to be learning directly from the seasoned and experienced ILADS doctors.

===========

www.ilads.org

ILADS

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
In news, Spring of `09:

http://www.lymedisease.org/news/lymepolicywonk/114.html

Over 1,600 pages of analysis and research studies delivered by ILADS to the IDSA, contesting IDSA recommendations.

------------

http://www.lymedisease.org/news/lymepolicywonk/115.html

The Association of American Physicians and Surgeons (AAPS) takes IDSA to task

------------

http://www.lymedisease.org/news/lymepolicywonk/117.html

Germany Says No to IDSA Lyme Guidelines

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


http://cassia.org/essay.htm

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

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

www.lymeinfo.net/medical/LDSymptoms.pdf

Lyme Disease Symptoms

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


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"

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

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

Lyme Disease: Two Standards of Care

by LORRAINE JOHNSON, JD (revised 2005)

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

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


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


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

This article has much attention on both lyme and Cpn:


http://tinyurl.com/preview.php?num=64y3rv

(then clink "PROCEED TO THIS SITE")


May 2008 Volume 39 Number 5 LABMEDICINE
www.labmedicine.com - American Society for Clinical Pathology


CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES

- by Garth Nicolson, Ph.D.

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

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


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


http://www.underourskin.com

UNDER OUR SKIN (DVD available or through NetFlix)

---

http://www.underourskin.com/press_awards.html

Honors and Awards


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

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.

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
You have the best intentions, but it's an impossible feat. [Frown]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'd share with him:
www.hhv-6foundation.org

www.enterovirusfoundation.org

Focus diagnostics is a good lab for testing HHV-6, EBV, Cpn and most other infectious pathogens.

ARUP is best for enterovirus.

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

Icon 1 posted      Profile for METALLlC BLUE     Send New Private Message       Edit/Delete Post   Reply With Quote 
This will not end well (most likely). I agree with Keebler. To create a "presentation" -- as though you were giving a college lecture, is extremely difficult. Even the best writers and most organized patients (Me), have been laughed at by "well meaning, open minded" physicians.

They're always open minded until the words "Maybe I have Lyme?" come out of a patient's mouth.

Your best bet is to direct them to the ILADS website, and or give them a phone number for the organization so they can be put in direct contact with physicians who practice.

There is no possible way to conscisely present the facts surrounding Lyme Disease in a credible way that convinces a physician who has heard (over and over) that Lyme Disease is not a chronic infectious disease. ILADS page has a conscise fact sheet (basic information), but no references or information is available to put it into context or provide the scientific evaluations of how they arrived at their conclusions.

Additionally, preparing all that information -- even if it was going to be useful -- in less than 24 hours is not possible.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'd use the ID doc's services for hopefully a thorough evalulation and testing of all possibilities. If a patient has to educate a doctor on diseases, that's so very, very sad. Tell them write the check to YOU. [Smile]

Last time I remembered, you are paying THEM for their knowledge, right? Sadly. we pay docs here sometimes for their script pad.

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270

Icon 1 posted      Profile for sutherngrl     Send New Private Message       Edit/Delete Post   Reply With Quote 
I agree with Keebler and Seekhelp. You cannot educate "any" physician. And its not our place to educate them anyway. Its THEIR place to educate themselves and keep up with the changes.

Like Seek said.....we pay them!

I think you would just be setting yourself up for disappointment!

I have sat in too many non lyme literate doctors offices. They don't really want to know about LD! Even if they act like they do!

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Speaking with ID doc tomorrow

That should be "oh so much fun."

Good luck with that.

(I think Keeb has given you everything you need. Is that right?)

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

Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Blackstone
LymeNet Contributor
Member # 9453

Icon 1 posted      Profile for Blackstone     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for the links - that's a lot more organized than I am! The only thing I could really use is good data on finding tick-borne infections in spinal fluid through lumbar puncture. I have a number of figures floating around in my head as to its effectiveness (or lack thereof I should say), but I don't for the life of me remember where I read about them.

I know that it may seem an impossible feat, but as I mentioned before a very good friend and colleague set up this meeting so I owe it to him to give it my best shot to inform this doc. I know it is difficult, but we can't give up trying to explain logically and with great scientific backing why "The book" is incorrect on this specific thing.

I also personally feel that the kind of access I have and my "status" compels me to try and make these arguments so that others not part of the medical community don't have to. If this fellow is not as responsive as I'd like him to be, I can always go elsewhere to find someone to sign off on infusions or work on personal treatments, but not everyone has that knowledge or liberty.

Posts: 685 | From East coast, USA | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Finding TBI's in spinal fluid has about a 20% success rate.

I don't have data on that. If you have time, you could look thru this link to see if someone posted that info here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=047324

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

Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
I still doubt the doctor takes 10 seconds to seriously consider this. But, I admire you for trying. I've given up on all doctors that don't have the initiative on their own.


I had read finding lyme or other TBD in CSF (cerebrospinal fluid) is far less than even 20%. TBI can also mean "Traumatic Brain Injury" so I use TBD for "Tick-Borne Disease"

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

http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Summary of ILADS Guidelines for
Lyme Disease

Excerpt:

. . .

Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.

In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.

For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.

The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.

The proposed index of 1.3 would be expected to have even worse sensitivity.

. . . .

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

Icon 1 posted      Profile for sparkle7     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for your work, Blackstone. Let us know how it goes.

There's also the issue of co-infections & parasites...

I'm sort of out of it today. Otherwise, I'd try to offer more help.

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Give a Maryland duck Maryland information... and studies done on Maryland patients... compliments of Johns Hopkins.

This Hopkins study shows 75% of people using the IDSA blood testing methods are missed! It is one of my favorites!

As for spinal fluid... not a good return rate either. They state... " Of the three CSF specimens [from Lyme patients], one grew B. burgdorferi, one culture had no growth, and one culture was contaminated and unable to be analyzed."

Ho Ho Hopkins comes through for you!

[Big Grin]


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/pdf/0742-05.pdf

PS. Bless your heart for trying. I wish you well, but if the general trends are followed in this case as in so many others... I think you will be disappointed.

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
street129
LymeNet Contributor
Member # 23472

Icon 1 posted      Profile for street129     Send New Private Message       Edit/Delete Post   Reply With Quote 
please keep us informed, this sound interesting. [Smile]

--------------------
IgM: Neg Neg 34IND 39IND
41+ 83-93IND

IgG: Neg Neg 41+

cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system

GOD GIVE IT, AND GOD CAN TAKE IT AWAY

Posts: 655 | From new york | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
So, how did it go? I hope it was a benefit to you, one way or another.

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Blackstone
LymeNet Contributor
Member # 9453

Icon 1 posted      Profile for Blackstone     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all for your time and organization. Due to an emergency, my appointment was postponed until next week instead, so that we'd have the proper time to sit down and talk. Don't worry, I'll let everyone know what happens. [Big Grin]
Posts: 685 | From East coast, USA | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
Shoot - we were waiting with baited breath to see if you convinced him or not!

In the meantime, hey, really study your info and give this doc a run for his money next week!

Posts: 13069 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

Icon 1 posted      Profile for METALLlC BLUE     Send New Private Message       Edit/Delete Post   Reply With Quote 
Now you "might" actually have a chance. More time for preparation could help and you might strike a hit if this guy really isn't a douche.

Giving a copy of Under Our Skin can be useful for some. I did that and did find a few receptive doctors.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
tanzi2u
LymeNet Contributor
Member # 9237

Icon 1 posted      Profile for tanzi2u     Send New Private Message       Edit/Delete Post   Reply With Quote 
The one article that I have seen that actually makes a non-believing doc think twice about the chronicity of Lyme is:

Comments: Regarding Lyme disease (LD) treatment recommendations, by David Volkman, Ph.D., M.D.
Emeritus Professor of Medicine and Pediatrics
SUNY, Stony Brook, NY, previously Senior Investigator with the National Institute of Allergies and Infectious Diseases.

(Essentially Volkman is one of the IDSA's own, and was a major researcher for them, who is calling them to task for misrepresenting and twisting the research to suit their pet theories.)


The link to the article is at the bottom of the page at CALDA's Lyme Policy Wonk blog, March 26,2009
http://www.lymedisease.org/news/lymepolicywonk/82.html

I would include that date's blog post as well, as it summarizes why Volkman's article is so very important.

Posts: 115 | From USA | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
tanzi2u... That was AWESOME!!! I've never read that!!!

[woohoo]

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

Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

Icon 1 posted      Profile for METALLlC BLUE     Send New Private Message       Edit/Delete Post   Reply With Quote 
Update?

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.