People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
Posted by Siciliano (Member # 15920) on :
Hi, Kzuber, welcome to our site.
I have also send you a pm.
Posted by TMolloy (Member # 22711) on :
I urgently need a doctor in the MN Twin Cities area. Can someone help out?
Posted by Siciliano (Member # 15920) on :
TMolloy--you need to start your own post so everyone will see your request, this way of posting under someone else--you become "buried" under for no one comes back to read these after they send out relies for the first poster.
Just go to top/bottom of page, click on "black cloudlike" sign which reads as "Post New Topic" and this way all will see your post immediately.
We understand that you are new and please know that we are only trying to kindly show you how it is done.
We are very happy that you found us!! Welcome! Look forward to helping you with your NEW posting.
Posted by Keebler (Member # 12673) on :
New bill would protect physicians who prescribe long-term therapy
by Debra Neutkens Staff Writer
Published: Tuesday, September 29, 2009 7:01 PM CDT
FOREST LAKE -- Those who suffer chronic, debilitating Lyme disease have only a handful of doctors, maybe three in the state, willing to treat them.
There are probably more, but those physicians are forced to fly under the radar when it comes to aggressive treatment for the tick-bite malady.
Legislation introduced by Sen. John Marty, DFL-Roseville, and Sen. Ray Vandeveer, R-Forest Lake, hopes to change that.
Senate Bill No. 1631 allows a doctor to treat chronic Lyme disease without fear of disciplinary action by the state Board of Medical Practice. The legislation is based on a Connecticut law allowing physicians to use their best clinical judgment when treating Lyme disease.
Three states, Connecticut, Rhode Island and California, have passed similar bills to protect physicians.
Marty, who is chair of the Senate health committee, acknowledged a lack of consensus on Lyme treatment in a statement released last month. Even doctors in other states feel they will face severe repercussions for treating patients, he said after a lawmaker's meeting with state and national Lyme health experts.
One of those experts was Dr. Betty Maloney, a family practice physician from the Forest Lake area who advocates for the Minnesota Lyme Action Support Group.
``It is a principle of medical ethics that patients hear treatment options, including risks and benefits of alternative treatments to make a choice,'' Maloney told The Press. ``Now patients with persistent Lyme disease hear only strategies advanced by the Infectious Diseases Society of America (IDSA). They don't learn the alternatives - longer antibiotic therapy or combinations of antibiotics - to make an informed choice.''Marty and Vandeveer's bill would make it possible for physicians to prolong administration of antibiotics longer than the recommended 28-day treatment course by removing concerns about medical board interference, noted Maloney. She attended a July IDSA hearing in Washington, DC, to discuss current guidelines for treating Lyme disease, submitting over 80 pages of research analyses on behalf of the International Lyme & Associated Diseases Society. The 2006 IDSA guidelines state there is no evidence long-term antibiotics cure chronic Lyme.
The issue is complicated because the disease is complicated, Maloney said. ``I am not trying to promote a particular agenda beyond wanting patients to get the care they need. I want the science to speak. In some instances, we have lost track of the science and become political on this issue. I'm not sure why it's political, but if the disease is defined in very narrow fashion, insurance companies have the right to deny care.''
A medical ethicist was asked to submit guidelines for selecting review panel members, according to Maloney. Anyone who made $10,000 related to care and treatment of Lyme patients was omitted from the panel. ``Essentially all physicians who treat Lyme were eliminated,'' Maloney pointed out. ``That was ludicrous. So no one on the panel really understands nuances of treating a Lyme disease patient; who understands the importance of treating co-infecting organisms. The panel doesn't understand the level of fatigue in Lyme patients and how sick they are. Fatigue like `I can't get out of bed.' Lyme patients aren't working. They have cognitive issues. The spectrum is wide.''
After review of written submissions and hearing transcripts, the IDSA panel is expected to make a decision on whether guidelines need revision by the end of year.
Meanwhile Lyme disease cases are dramatically increasing in Minnesota, which is considered a hot spot for tick-borne illness (see map). Anoka, Washington and Chisago County are all included on maps of high-risk areas for tickborne disease.
According to Maloney, tick numbers change season to season and by zip code. Pockets of infection have to do with trees, especially oak trees, which attract rodents.
The primary host for the blacklegged, or deer, tick is not deer, but mice. The first stage of its life cycle, the larvae, becomes infected with the bacteria responsible for Lyme disease, Borrelia burgdorferi, after feeding on diseased mice. The next stage is the poppy-seed-sized nymph, the stage that causes the most human cases. Nymphs live in leaf litter under oak trees. Woodpiles are another source of infestation because mice nest there.
Left untreated, Lyme disease can cause a multitude of problems, including paralysis, arthritis, flu-like illness, irregular heartbeat, and loss of ability to concentrate, according to the Minnesota Department of Health. It can infect any organ, including the brain, heart, joints and nervous system. It has also been called the ``Great Imitator'' because it can look like other diseases. Many sufferers have been misdiagnosed with conditions such as fibromyalgia or chronic fatigue. If the brain is infected, the misdiagnosis might be MS, ALS or Parkinson's.
If the Marty/Vandeveer legislation passes, will doctors who treat Lyme be confident they won't be investigated? ``Employers might still mandate how physicians treat Lyme, but it is one more obstacle to access removed,'' replied Maloney. ``I want physicians and patients to go back to relationships. The bill helps that. It allows physicians to more fully enter into a relationship with Lyme patients.''
Editor's Note: Dr. Maloney has just published an article on "The Need for Clinical Judgment in the Diagnosis and Treatment of Lyme Disease," in the Journal of the Association of American Physicians and Surgeons, www.jpands.org. Find it at
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