TOUCHED BY LYME: Are you a Minnesota Lyme patient? If so, MLA needs you.
Minnesota Lyme Association seeks feedback from state residents who have had long-term antibiotics for Lyme disease.
In 2010, Minnesota’s medical board gave doctors in that state a five-year window in which they can treat Lyme patients with long-term antibiotics without fearing they’ll lose their license because of it.
The five-year moratorium was a compromise reached between the Minnesota Board of Medical Practice (MBMP) and state legislators who wanted to protect Lyme doctors from prosecution.
It’s now almost two years into that 5-year period, and the Minnesota Lyme Association wants to document how long-term antibiotics have helped Lyme patients in their state. MLA medical adviser Dr. Elizabeth Maloney is spearheading the project.
Dr. Maloney wants to present the MBMP with a single report containing the outcomes from individual patients, as documented in their medical charts. This is called a collection of case reports and is recognized as scientific evidence.
According to the MLA, “Validating the efficacy of long-term treatment to the MBMP and the state legislature will make the case for continuing the moratorium, to the benefit of current and future Lyme disease patients.”
Although the moratorium runs another 3 years, Dr. Maloney needs to start compiling this information now. It’s a time-consuming project that can’t be done at the last minute.
If you currently have or had Lyme disease and were treated with antibiotics for more than 30 days, and you lived in Minnesota during a portion of your treatment, the MLA wants to hear from you!
I want to send you my story. I am a person with late-stage, chronic Lyme disease who lived in Minnesota for over 13 years. I have a good LLMD there who continues to treat me for it. He is the only doctor who has been able to help me. I will do all I can to help you document the need for continued antibiotics for Lyme disease.
I would also love to share my story about Chronic Lyme Disease in Minnesota. Please let me know if the link begins to work so I can!
Can you give me the name of your doctor in MN that is/has treated you for Chronic Lyme Disease? I believe I may be a candidate for this disease.
I too have Late stage Lyme. My symptoms have gotten severe. Came out to MD thinking I could get medical care? They will not treat chronic Lyme. I lived in MN most my life. Am wondering if you could tell me what doctor you see? My name is Maureen
480-650-0780
Got Lyme in 1991 . Not diagnosed for over a year. On IV ABX for months along with oral on and off for years. Now have Biofilm in my blood. White matter brain disease shows on my MRI of the brain. My road with Lyme has been hell emotionally,physically,and financially. I will be willing to share my info!
Isure would like to speak to you. Do you go to group meetings/where are you located. We could just email.Thanks
How do I get the name of the doctors that you guys are seeing? My boyfriend has been diagnosed based on the symptoms and tests- but has yet to find a doctor to help him. He is at his wits end with this and it’s been difficult on our entire family. He’s been sick for months and now that we finally have a cause- we are just wanting to start woring towards getting better and are looking for the steps to do so. Any help or suggestions would be greatly appreciated!!
I have been battling Lyme now for 3 years on and off and can not find a doctor that 1 believes in chronic lyme, and 2 will try and treat me for this. Does any one on here have a good doctor to recommend me to? I am starting to feel like I have no options to treat this. I did the 30day doses of ABX 3 separate times and the symptoms come back and it seems that they get worse each time, but further lyme testing is coming back negative. jnuehring21@hotmail.com
Recommend you find an ILADS-affiliated doctor.
What a great idea! Why can’t more states adopt that moratorium, seems like a great way to document results of long term LYME treatment studies. LYME affects us in so many ways and our treatment options are so limited! Wishing I was a Minnesota resident so I could participate in that study …..
I have late-stage, chronic Lyme Disease and I live in MN. I’ve been sick for about 3 years and I just got diagnosed in November by my LLMD. I’ve been on antibiotics since January and I’m starting to have some of my symptoms improve a bit. I’d be willing to participate in the study and share my story as well because I want the medical board to know how important and helpful long-term antibiotics are. I know that I would be getting worse if I wasn’t on them and I know that I’m starting to see improvement because of the antibiotics. Thanks!
I have had Lyme’s for almost 4 years and have not yet been treated by long-term antibiotics. I am looking for a good lyme doctor in the twin cities area. Any recommendations? Thanks.
Petra, we recommend you contact the Minnesota Lyme Association to learn about resources in your area. http://www.mnlyme.com/
I was treated in August 2010 for Lymes … I was only treated for 30 days and told I was cured, in the last three years i have had 10 plus injections in my joints and many inflamation problems.. when i ask the doctors if it has any thing to do with lymes they all say you were treated and it not from that… I have always had problems since then and struggle to get doctors to listen… were can i get help, i need sleep, treatment for pain and swelling and so much more then being told Iam depressed! if you are a doctor and want to help me please contact me!
My 7 y.o. was dx’d with Lymes a year ago but was likely affected and never caught at least a year before that. He has had repeated, chronic problems since. He ended up in a childrens hospital due to over medicating by our clinic physicians for illnesses he didn’t have. The cycle has started again and we don’t want to go back to the clinic to get the same “treat the symptoms, not the illness” answers. I would like to see resources and directories for Dr’s that specialize in Lymes treatment. He has a long life ahead of him and we’d really like to get him help now!
Lucy, send an email to newsletter@lymedisease.org telling us what part of the country you are in, and we’ll send you some information.
I am more than willing to participate in the research. I am a Minnesotan currently being treated for chronic Lyme. I had the bull’s eye rash 32 years ago, I called it my “target”, thought is was a spider bite. As years went by I suspected Lyme. It took 30 years for me to find a doctor who ran the correct tests and didn’t just tell me my symptoms were stress related. After 30 years, the difficulty of just getting through each day feeling so poorly was such that I was truely having difficulting seeing the point of living. Finally, an Integrative MD used the Western Blot using a lab testing all bands – it was positive plus I had “textbook” symptoms. Started treatment on the herbal antibiotics. It will be two years on the antibiotics this Nov. 2013. Before, at times, it took all my energy just to go grocery shopping, now I am ballroom dancing four nights aweek! It took over 10 months on the antibiotics to get to the point where I could even think about dancing, I am SO much better now. Life is good again. There IS such a thing as chronic lyme and we need the medical community, lawmakers and insurance companies to acknowledge, be educated and make treatment available and affordable for this very dibilitating disease. Many are suffering needlessly. I would like to do what I can to help. Thank you!
wondering what herbal antibiotics you were on?
2yrs ago I was treated for Anaplasmosis and Lymes Disease for 2months. I took care of all my symptoms.
This July I was bit by a tick in Grand Rapids, Minnesota (where I live in the summmers) and in August I was treated for 2 wks of Antibiotics. Symptoms never left and I am wondering what to do next.
Thank you for your time.
After several years of being sick with Lyme (I think I’ve had it since the 1980’s), I found a doctor in St. Paul who has me on antibiotics. I can tell that I’ve got less brain fog now and am more productive at work. However, the arthritis is really bad in the knees and muscle pain is still a problem. I am also dealing with mercury poisoning from my dental work (I had them removed last year). Does anyone know if the rumor is true that the moratorium to protect Minnesota doctors from the medical board has been extended to 2019? That’s what I heard.
My 35 year old son in Mn was first diagnosed in Aug of 2013, his older brother in Arizona who also had lymes actually diagnosed him before he was formally diagnosed. My son in Az has had better treatment than my son in Mn (however, very expensive).This Sept my Mn son had a bullseye on his inner thigh and again is more tired, can’t sleep at night, is sleepy during the day, neck pain, body aches, indigestion, lacks motivation, irritable and anxious. His regular doctor ordered 15 days of antibiotics and refused to listen to or further help him. I have been researching these past 2 days; trying to find someone who can help him. I have gotten a few names, not yet sure of our plan, but formulating some possibilities. It is just not coming together fast enough. We both live in Bloomington. Something has to change, why do we pay so much for insurance that we are mandated to have, if it does nothing to help us?
I would like to participate but the link above doesn’t work. I heard the moratorium was extended through 2019, wonder if that is true. My life has been ruined by Lyme and 4 co-infections. Although I feel bitter about the doctors who refused to help me, I take comfort in the fact that their chickens will someday come home to roost.
My young daughter tested positive for lymes 3 weeks ago. She is on doxycycline. She has 3 days left of the meds and is still having symptoms. She also had bell’s palsey from the lymes, thankfully that resolved!
I had Lyme’s disease in 1993. I was fortunate to have a doctor who recognized the symptoms. I tested negative first, but Lupus showed up. She said that the numbers weren’t high enough to warrant treatment for Lupus. I was on a high dose of amoxycillin, high dose of NSAIDS, flexeral, and amitriptyline. I was homebound and spent 22 out of 24 hours in bed. I had a 6 month old baby, a 2 year old and a 3 year old at the time. In 1993, doctors were still arguing about whether it was actually a disease, so I am glad my doctor believed me! Since then, if I take any kind of penicillin, I get multi-covered bruises instantly if I bump into anything. I still bruise easily when I am not on an antibiotic. I still have short-term memory issues and some chronic inflammation. I am also on an antidepressant, the amitriptyline for IBS, and flexeril. I have TMJ and food allergies. I had a brain aneurysm 5 years ago that was caught before it ruptured.
Hello,
I have been through eight months of hell where no one diagnosed me and have begun to experience symptoms of bulbar ALS and then got diagnosed with active Lyme disease based on clinical history. I have had almost a month of abx now and symptoms have worsened, but this is typical in initial treatment. I have noticed less brain fog and I think the medication is having a slow effect. I would be happy to follow up after more time has passed.
Me, too, ALS. Now Lyme. Spirochettes grown in culture. What’s your treatment now? Are you better?
I was diagnosed with Lymes after I had symptoms for several years.
If research or information is needed, please contact me. As far as a doctor in Mn or anywhere in the world that can help get rid of Lymes, I’d love the information.
Hi Marie, this is another Marie recently diagnosed with Lymes. Would you mind passing along the name of your MN Doctor? I am having a hard time finding anyone to treat this! Thank you so much!
What is the preferred antibiotic for initial treatment of lyme disease or a tick bite?
I’ve heard that doxycyline is ineffective against Lyme disease in the long-term. It results in short-term results that lead you to believe you’re cured when really you’re just in remission and waiting for it to come back worse than ever months or even years later.
If I go to a doctor with a deer tick bite that’s been attached for 24+ hours, what antibiotic should I insist I receive instead of the standard, but ineffective, doxycycline treatment?