posted
My new husband recently found out that the military is assigning us to Shreveport, Louisiana in a few months. We are very concerned about the health care situation there and are therefore petitioning the move based on my need to be near a doctor who understands chronic Lyme.
My doctor has filled out the paperwork to present to the military panel and he basically said that I have chronic Lyme, Fibro and dysautonomia. He said that there are very few doctors in the country that understand these conditions adequately.
My husband and I meet with the panel next week to present this information and our case to be assigned elsewhere. Do you guys have any suggestions as to how we can convince these folks that my health situation cannot be handled by just any ID doc?
We are afraid the military docs will not even believe I have Lyme so this may be an uphill battle. I am frightened by this.
Please help...I value your opinions and advice.
Posts: 331 | From virginia | Registered: Nov 2005
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bettyg
Unregistered
posted
Hi honeymooner!
First off, I suggest you edit/pencil icon your topic title so you get folks to read it to:
military moving us; I need to remain close to good LLMD; help!
The military takes TICKS very seriously; they just don't talk about it at all!
I know we have other military wives/family on here, if they don't see for now; please be sure to bring your post up Friday night for weekenders. Best wishes on staying near a good LLMD.
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posted
Hi Betty, You are so sweet. I will reword this message since I know there are some military folks on this forum...I have even heard some of them talk about TriCare, the military health insurance.
Thank you for your suggestion!!!
By the way, my doc is concerned himself because he feels it is going to be difficult to find someone who can handle my particular conditions. aargh.
Posts: 331 | From virginia | Registered: Nov 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 95730 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said..
"Do you guys have any suggestions as to how we can convince these folks that my health situation cannot be handled by just any ID doc?"
Certainly. VERY easy. VERY VERY EASY!!
Get a copy of the Infectious Disease Society (IDSA) guidelines.
NOTE- They have officially been "withdrawn" because they are outdated.. but you can find them online still.
Then look at them and actually read them. You will notice they don't "do" chronic Lyme. They don't believe in it.. and don't even address treating it!!! And they indicate it doesn't even exist. And this is written by the INFECTIOUS DISEASE ducks!
So how can they give you to a doctor who doesn't even believe in the disease you have, and has NO experience treating it?
Plus..
Get a copy of the ILADS guidelines too! In it they tell all about chronic Lyme and coinfections... so you CAN prove it exists.
Then.. this is the good part...
Tell them that the ONLY guidelines that are able to be used (according to the folks from the American Medical Association, etc.. and which ARE current.. are the ILADS guidelines.
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To find the old IDSA guidelines- look for:
Practice guidelines for the treatment of Lyme disease. (NGC-1898) Wormser GP, Nadelman RB, Dattwyler RJ, Dennis DT, Shapiro ED, Steere AC, Rush TJ, Rahn DW, Coyle PK, Persing DH, Fish D, Luft BJ. Practice guidelines for the treatment of Lyme disease. Clin Infect Dis 2000 Jul;31(Suppl 1):1-14. [99 references]
Use the index below to find guidelines (listed by guideline developer) that have been withdrawn from the NGC Web site. Select "All" to see a complete list of withdrawn NGC Guideline Summaries (organized alphabetically by guideline developer).
For a list of guidelines that have been updated, go to .
Guideline summaries are removed from the NGC Web site because they no longer meet the NGC with respect to date, or because the guideline developer has indicated that the clinical practice guideline upon which the summary is based is obsolete, should no longer be used, or has not yet been replaced with a new/revised guideline. Please refer to the guideline developer's Web site, where available, for more information.
The National Guideline Clearinghouse™ currently contains 749 guidelines in the withdrawn archive.
posted
TinCup, That is a great idea...especially since my doctor mentioned the ILADS guidelines in his paperwork saying that he follows them!
Sneaky suggestion...I LIKE IT!!! Posts: 331 | From virginia | Registered: Nov 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am pretty sure there is a doctor who treats Lyme disease in Louisana. Also, there is a Lyme Military Group who might have some good advice for you.
You can reach the head of the Ld Military Group at [email protected]
Can't find the LA doc. Go to Seeking Doctor section here and ask there.
posted
There is an LLMD in La. I'm afraid that I do not have details, but if you post in "Seeking a Doctor", someone will be able to tell you.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Military family here as well. Make sure you switch to Tricare Standard so you aren't stuck seeing military doctors.
I was told of a doctor in Springfield, MO, which isn't too far from Shreveport.
Let me know what the military does for you. What branch are you in? That makes a big difference. We are Army and I don't think for a second they'd consider chronic Lyme Disease when you PCS simply because it's controvertial.
Posts: 11 | From MO | Registered: Jul 2006
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posted
Good question. Can I accurately say to these people that there are no IDSA guidelines currently??
Posts: 331 | From virginia | Registered: Nov 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes.. VACHICK... please do.. and do it NOW!
The IDSA has continued to state the new guidelines will be out "soon"... so put some wheels on it!
I am posting a letter I wrote to some officials about this topic. Hopefully it will help explain more details for you?
History- I originally sent out a notice to the world that the IDSA guidelines were "officially withdrawn" when I stumbled on that little fact while researching.
Since our arguement with the official folks was concerning which treatment guidelines to use... they responded to my notice because, of course, they don't WANT to use our guidelines.
This is my response back to them. ````````````````````````````````````````````````
Dear Official,
Thank you for sharing your opinions about the Infectious Disease Society of America's `Practice guidelines for the treatment of Lyme disease'. As you know, the IDSA guidelines were published six years ago (2000) by Wormser, Nadelman, Dattwyler, Dennis, Shapiro, Steere, Rush, Rahn, Coyle, Persing, Fish, and Luft.
The guidelines have since been officially withdrawn and placed in an archive by the National Guideline Clearinghouse (NGH), along with over 700 other outdated treatment guidelines.
I am very concerned that our residents could be at risk if these outdated and officially `withdrawn' guidelines were approved for use in our state.
I have provided detailed reasons below why no one who is responsible for the publics health should consider using withdrawn/archived guidelines. If anyone has any questions or comments, please feel free to contact me at:
Sincerely,
xxxxxxxxxxxxxxxxxxx
Please note- I copied your letter and I added my comments in bold print below each topic.
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THEY SAID... "Recently a message was circulated to the subcommittee announcing a withdrawal of the Infectious Diseases Society of America's Lyme Disease Treatment Guidelines, originally published in 2000. However, verification with the organization has demonstrated that in fact this document has not been withdrawn."
MY RESPONSE... A select group of members from the IDSA organization may not WANT these guidelines to be considered withdrawn, however, officially, according to the standards set by the United States Department of Health and Human Services, the Agency for Healthcare Research and Quality (AHRQ), the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP]), the guidelines HAVE been withdrawn.
In addition, expecting residents to accept outdated and withdrawn guidelines, which were written using studies based on unreliable tests, can not possibly be in the best interest of the public health.
As we all know, standard Lyme disease tests have been proven to be "unreliable" by the Centers for Disease Control, Federal Drug Administration (FDA), National Institutes of Health (NIH), American Medical Association AMA, International Lyme and Associated Diseases Society, Yale, Mayo Clinic, Harvard and even Johns Hopkins, to name a few.
Those responsible for protecting the public health will hopefully agree- our residents should be afforded nothing less than the highest quality of health care services and they should have access to the most up-to-date standards of care available. For this reason, outdated and withdrawn guidelines should not be considered for use in any areas of the country.
To put this into perspective we must ask ourselves, would cancer patients and their doctors agree to use outdated and/or invalid treatment protocols? Would they be distressed to learn we supported their use, especially when valid up-to-date guidelines existed?
THEY SAID- "It is still available as a valid reference while the IDSA prepares an updated version for upcoming release."
MY RESPONSE- I will hope no one will suggest our residents and their families be subjected to substandard care by approving the use of antiquated treatment guidelines, especially when other options are readily available.
As you know there are published, peer-reviewed diagnostic and treatment guidelines (ILADS 2004) that are up-to-date and which have been approved for use by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality (AHRQ), the American Medical Association, the America's Health Insurance Plans [AHIP], the International Lyme and Associated Diseases Society (ILADS), the Lyme Disease Association (LDA) and many world wide organizations concerned with providing the best care possible for individuals with Lyme and tick borne diseases.
The ILADS guidelines, therefore, should be THE standard of care for all residents. There is no other acceptable or responsible course of action.
If the IDSA group would like their future guidelines to be considered for use, they will first need to do a great deal of research, prepare and submit their draft for approval through the proper channels and follow proper procedures.
If we supported anything less it would be unethical and that decision could place the citizens of our state at risk.
If we supported the use of the IDSA guidelines, knowing they had been officially withdrawn, we could be responsible for causing additional people to suffer from the chronic stages of tick borne diseases, disabilities and possibly even death.
If the IDSA group or their supporters ignore the rules that were set forth to protect all Americans by insisting withdrawn guidelines can and should be used, it opens the door for everyone else with invalid treatment protocols to do the same.
When and if IDSA members decide to update their guidelines, they will need time to review an enormous amount of literature. This process should reasonably take several years to complete, due to the fact there are thousand of documents to study, which include, but are not limited to:
7,456 published medical reports on Lyme
1,550 published medical reports on Bartonella
1,773 published medical reports on Ehrlichiosis
1,075 published medical reports on Rocky Mountain Spotted Fever
2,498 published medical reports on Mycoplasma
2,215 published medical reports on Tularemia
8,988 published medical reports on Brucellosis
5,869 published medical reports on Leptospirosis
1,239 published medical reports on Anaplasma
12,263 published medical reports on ticks
13,470 published medical reports on spirochetes
34 published medical reports on Master's Disease (STARI)
Total- over 58,000 documents
Once the IDSA members have completed this enormous project and have followed proper procedures, they can THEN submit their approved guidelines for review by our committee. Until that time we all must be concerned with how to best serve and protect our most precious natural resource, the people of our state.
IDSA will also need an extensive amount of time to review additional medical documents not listed above, consider hundreds of thousands of patient's results and individual case studies, request input from scientists and physicians across the county and world-wide, review the success/failure rate of their old guidelines, as well as, consult with insurance representatives, legal advisors, federal, state and local agencies, universities, private organizations, hospitals, patients and experienced front-line physicians from all medical backgrounds, etc.
In the meantime, in order to provide the best care available for the residents of our state, we should not hesitate to support and promote the current ILADS guidelines that have already been approved and are currently in use.
Also please note that the Web site listed as a source for withdrawal of that document and other clinical guidelines, the National Guidelines Clearinghouse (NGC), clearly states:
"Guideline summaries are removed from the NGC Web site because they no longer meet the NGC Inclusion Criteria with respect to date, or because the guideline developer has indicated that the clinical practice guideline upon which the summary is based is obsolete, should no longer be used, or has not yet been replaced with a new/revised guideline."
If the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality (AHRQ), the American Medical Association and the American Association of Health Plans [AHIP] have declared the IDSA guidelines are outdated and no longer valid, that should be enough of a concern to all of our committee members that they too would immediately reject them.
I hope our committee would not elect to go against official rulings and take the chance of risking the health and lives of the citizens of our state.
THEY SAID... "NGC's decision to remove the IDSA guideline from its listings may reflect only the first of the above criteria, and therefore may have no bearing on the Subcommittee's review process or its recommendations."
MY RESPONSE- It may reflect only the first criteria, as you suggested... but old is old... and withdrawn is still withdrawn. If the IDSA guidelines had been totally effective in accomplishing their goals, without causing harm or strenuous objections, and if they were providing an acceptable foundation or protocol for the diagnosis and treatment of Lyme and tick borne diseases, I could understand why some people might consider leaning toward the possibility of allowing them to stand.
However, it is obvious that the IDSA guidelines were not adequately addressing problems faced by our residents. On that basis alone they should not be considered for future use.
Why would anyone risk the health, future or lives of more residents by approving or promoting invalid and withdrawn guidelines?
The use of IDSA guidelines at this time could also cause legal problems for the State, the health departments, physicians and labs if someone were to be harmed by their continued use, especially if those promoting them were warned previously that the guidelines were no longer valid and had been withdrawn.
THEY SAID- "According to IDSA, the guideline's developer, the other NGC withdrawal criteria do not apply in this case."
MY RESPONSE- Had the IDSA been on top of the situation in the first place and had they kept up-to-date with current research over the past six years and incorporated their findings into their original guidelines, they wouldn't be trying to ignore the negative actions taken against them (removal of their guidelines) by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality (AHRQ), the American Medical Association and the America's Health Insurance Plans [AHIP].
CONCLUSION:
Promoting the use of guidelines that have been proven to be unsuccessful for many people in the past and which are admittedly outdated and have officially been withdrawn, for ANY reason, is simply not acceptable nor in the best interest of the residents of our state.
References:
The National Guideline Clearinghouse™ (NGC) is a comprehensive database of evidence-based clinical practice guidelines and related documents. NGC is an initiative of the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. NGC was originally created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP]).
The NGC mission is to provide physicians, nurses, and other health professionals, health care providers, health plans, integrated delivery systems, purchasers and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use.
The National Guideline Clearinghouse™ (NGC) an initiative of the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. NGC was originally created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP]).
The NGC Web site and its content were developed by ECRI, an international nonprofit health services research agency, Collaborating Center of the World Health Organization, and a designated Evidence-based Practice Center (EPC) of the U.S. Agency for Healthcare Research and Quality (AHRQ).
posted
Thanks, TinCup...I will use this at my hearing tomorrow. Should be interesting!
Posts: 331 | From virginia | Registered: Nov 2005
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Carol B
Unregistered
posted
Thanks Tincup-this made my day ! and so timely for Vachick-can't wait to hear the results of your hearing.
I am going to email a friend visiting in Michigan who just got a tick bite-walked into a clinic and was prescribed 3 weeks antibiotics. I told her to come here to Lymnet and get the real facts.
I feel like a broken record trying to tell people about IDSA vs ILDA guidelines.
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!
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Make sure you switch to Tricare Standard so you aren't stuck seeing military doctors. 
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