Greetings!

The April meeting of the Lymenet North Metro will occur at First Lutheran
Church of Columbia Heights at 7:30pm (not 7pm!). http://www.lymemn.org/support.html
We hope to have a speaker or speakers with a message of hope, those who have beaten Lyme at our May meeting.

UPDATES

Treatment of Tick Bite with or without rash: Doctors continue to insist on a positive
Elisa before, followed by the Western blot before starting treatment. Most
will try to claim a positive test is probably a "false positive" and try to
avoid treatment. Almost no doctors will respond to requests for a specific
labs test. Due to HMO's, with a grant from the CDC and Mike Osterholm's
former ICAN targeting doctors who prescribed "to many antibiotics" in 1999
and the false story about dangerous Lyme patients Minnesota doctors are
literally fearful of anyone who comes to them thinking they have Lyme. It
makes no difference how the patient intends to pay.

There is no treatment for secondary, tertiary or treatment failure with Lyme
within Minnesota. Attempts to insist only get the patient labeled as "difficult"
or in need of psychiatric treatment. This is especially true at Mayo Clinic,
the University of Minnesota and virtually all Infectious Disease
Specialists. We have one doctor we can count in in emergency medicine who
can usually stabilize patients enough for them to get treatment out of
state. Almost no doctor will follow an out of state doctors requests for
blood tests and ongoing prescriptions. There is one obstetrician that is a
secret even to me. People must be vetted before being referred to this
doctor. Patients must also agree not to divulge the doctors identity to
anyone but instead refer friends and family through the vetting process. It
is the only way we have found to protect this doctor and many healthy babies
have been born to infected mothers.

Legal Update: Duluth Clinic recently took the step of contacting any and all lawyers that
patients might use to bring legal action against them thereby making those
lawyers turn down any action against them due to "conflict of interest" It
is unknown if this is an industry wide practice.

Medicine Update: It is almost impossible to obtain prescription medications from Canada or
Mexico either online, by mail or in person. Buses of seniors are being
stopped and their Canadian/Mexican medicines are being confiscated. If
anyone has better information on this please contact Tom Grier
[email protected] as I have not had any direct dealings with this
method of obtaining drugs. A nurse present at the Duluth Support Group
meeting relates that almost all prescriptions will be electronic by next
year making it difficult to keep a low profile while getting antibiotics.

May is declared Lyme Awareness month in Minnesota and an article on Lyme
Disease is being written in "Minnesota Health Care News" - a magazine with a
circulation of 50,000 that is distributed to hospitals, clinics, and
pharmacies where people are receiving health care. We are hoping to obtain
a speaker for our May Lymenet North Metro Support Group meeting. We hope to
have some survivor stories to help people see some hope in an otherwise
dismal situation.

The proposed cable shows have been postponed until June due to the stubborn
staff infection in my cheek bones that is keeping me down, a family wedding,
High school and family commitments for my helper. We may have additional
help from a professional available at that time also.

Our deepest sympathies to the family of Paula Stens a neurological Lyme
Patient who was being treated by a Duluth Neurologist with IV antibiotics.
Paula made a good initial recovery in six months but had an immediate
relapse after therapy withdrawal and never was able to regain what she had
lost. She continued in a downward cycle of physical pain and mental
confusion. Paula started a Lyme Support Group in Houghton / Hancock MI and
helped many MS patients receive antibiotics with favorable results. She
helped me find and select some MS patients for our MS study in MN and
organized a Lyme conference in 1997 for the Upper Peninsula Health Dept in
MI. Paula took her own life last weekend. She is survived by her ex-husband
and 21 year old son who also has Lyme. We pray that Paula has finally found
peace and relief.

On a personal note: My doctors and dentist have been unable to cure the staff infection in my cheek bones that since 1999 has caused numerous complicated dental problems, Lyme/MS flare-ups and could become life threatening at any time. I am currently experiencing some brain fog, and mental fatigue but will continue to keep looking for cure(s) and do as much as I can. If you attempt to communicate with me and don't hear back please try again. We do need to continue to network to seek solutions to the Lyme dilemma in Minnesota and elsewhere.

Lynn Olivier, editor

Here in Wisconsin, there's at least a few LLMD's, and even a few hospitals that are LL.

Unfortunately, our version of Mayo's [Marshfield] is woefully ignorant of this disease, as my son's one week stay there proved.

Our IV nurse works for Marshfield, and I've been educating him, as well as him having seen with his own eyes, that long-term abx works. He's been relaying my son's progress to the Marshfield doc's, and they've shown some interest.

I find it interesting that Marshfield distributed through all newspapers in our local area, a big, glossy insert, about lyme last week. Apparently, I'm not the only one bitching about their doctor's ignorance of this disease.

Though, Marshfield remains blissfully unaware, our local hospital actually tests all those suspected of alzheimer's, stroke, MS, etc. for lyme. Now, their not ILADS, but at least their on the right path.

Haven't the Minnnesota ducks heard ? The CDC even say's lyme is a clinical diagnosis, blood tests are unreliable.

In fact, follow the link below and you'll see that the National Guideline Clearinghouse supports long-term treatment, and clinical diagnosis. I believe their the one's that the NIH relies on, for treatment guidelines.

And NP40:
That is the ILADS paper! How great to see it on a govt. site! I am sure I was supposed to know it was there, but I never made the connection.