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Michigan Lyme Disease Association

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Nonprofit Overview

Causes: Health, Public Health, Specifically Named Diseases

Mission: Our mission as the central voice in Michigan is to help prevent Lyme Disease and other Tick-Borne Disorders while helping to support research. Providing support and education to Lyme Disease patients, caregivers, Health Care Professionals and the general public. 

Target demographics: with support, education and research on Tick-Borne Diseases.

Direct beneficiaries per year: Research in Michigan, Doctor Education, Public Education

Geographic areas served: State of Michigan

Programs: Educational Lectures to Organizations/Businesses. Hosting Conferences to Educate Physicians. Supporting Research efforts. Setting up educational booths to educate the public. Setting up support groups to help patients.

Community Stories

113 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 3

never heard back, I hope all is well. hope to hear from you

Jessica Fstfm B.

General Member of the Public

Rating: 4

I just found this Org. I have had Lyme since 1988, I got bit while camping in Port Huron when I was 9. Even though I was lucky to have a Dr. that gave me anti-bionics, I was sick as heck. I still am fighting to this day and no one really listens. Many of us with Lyme will commit suicide because of it. I will give anything to help fight this devastating disease. You would never know I had it unless you were in my body.

1

General Member of the Public

Rating: 5

I have been sick for most of my life with both neurological and auto-immune illnesses. From childhood, I have asked doctor after doctor to figure out why I keep getting sick, because in my heart, I knew there had to be a catalyst to explain all of the illness and pain. I have had unexplained rashes, lung failures, my reproductive system has been removed due to Stage 4 endometriosis, my thyroid declared "dead", and then I almost lost my left leg - all before age 30! I am in pain 24 hours a day due a neurological condition called Reflex Sympathetic Dystrophy and I also have been diagnosed with Fibromyalgia. In 2016, I had to file disability retirement from my 15 year career with the government because my neurological disease had progressed to the point where it damaged the way it produces vision - sad reality of it being from the brain and not the eyes. I have blurry and double vision often which prevents me from driving and gives me vertigo and makes it unsafe for me and others.

In 2007, I had done some experimental treatments for my RSD at a hyperbaric oxygen clinic in Rockford, IL. I had 18 treatments in 10 days. Prior to the treatments, I was using a cane and a walker every day to get around because the RSD in my left foot/calf made mobility impossible to walk without assistance. During my 5th or 6th time in the chamber, the doctor monitoring me said to my mom he strongly believed I had Lyme disease. He said he had been around Lyme patients enough and had seen them come to the chambers for treatment and my body was reacting in the way he would have expected. I got relief for the RSD, but I ended up sick from the treatments for a few weeks after and suspect it may have been a herx. My mom and I saw an infectious disease specialist as soon as I returned home and she told us how expensive the testing and treatment would be and my insurance would not cover it, therefore, I did not pursue it at that time.

Fast forward to 2016 after I filed for disability... my mom said at this point, we had nothing to lose. She was worried I was going to die and I have a husband and son to consider. We found a homeopath who diagnosed me right away with the Lyme and started treatments. Unfortunately, they made me so sick, even at the lowest dose, I could not handle it. I was frustrated and lost.

We waited another year almost to try again, and by this point, I had learned about Lyme Literate Medical Doctors. In Michigan, I had found three. I made an appointment with one of them and my mom and I went and saw him for testing. I was shocked when he said he did not believe I had Lyme disease - he thought I actually had TB from the germ I tested positive from when I was in college in 1998. We got the results two months later, however, it is definitely Lyme disease and there is no TB to be found. We tried oral antibiotics at first with no changes and then we did daily IVs.

Between the treatment plans, my mom died very suddenly and it's been heartbreaking. She was my advocate, my rock, and my very best friend. I've struggled without her.

This is where Linda Lobes has stepped in from the Michigan Lyme Disease Association. Linda is the president of the association and has been for a long time. Her knowledge of Lyme disease is important, but it's also her knowledge of the healthcare personnel in our area that is so helpful to all of us. If you want to go to someone who is more natural - she knows who may be a better fit for you. If you need someone who may give you that kick in the pants you need - she knows that doctor as well. Linda is compassionate and passionate all in one. More than that, for me especially, she can truly empathize with what I am going through. When I needed to make a change with doctors, I was so lost because I didn't have my mom to help me through the process, and frankly, I was just so sick... Linda didn't just pull out a name for me. She made a call! She called the new doctor's office to make sure they were accepting new patients and then called me to be sure I was okay.

When you have a chronic illness you often feel as if you are on an island even if you are in a room among 1,000 people. It's such an isolating feeling. For many of us, we are in pain, sleep-deprived, and weak. Having an organization like MLDA and then having Linda as president - it just makes life a so much easier.

2

Volunteer

Rating: 5

I was diagnosed with Lyme disease in 2000. I had been infected since around 1965, but not diagnosed until then because doctors didn't really know much about it--it wasn't on their radar. So for a number of years I hardly left the house except for doctors appointments. Finally I decided to attend a support group, as long as my husband would drive me. I contacted the group leader and said I would probably leave early, because I tire easily. She said fine. But the group was so interesting, that I wanted to stay until the end, and kept going almost every month. I was learning so much! Eventually I decided to start another group, closer to home. MLDA helped me get it started and has given me and my group members so much helpful advice! All of the board members are volunteers, and most of them have personal experience with Lyme disease, so they really are dedicated and they really understand what the rest of us are going through. They also do education projects for doctors and other medical professionals, and use the organization's funds for research, so we know where the "hot-spots" are in the state. Getting involved with MLDA has made a huge difference for me and my husband and we really appreciate the work that is being done to help prevent others from getting infected, and to help those of us who are who already are.

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2

Volunteer

Rating: 5

When I was diagnosed with Lyme Disease in 2000 I did not know what it was, and had never met anyone else with it, except for my doctor! it took several years of feeling isolated during my treatment before I finally found MLDA, and it has changed my life. The friendships, support, and education I have received from this group (and continue to receive) has been amazing! And it is wonderful to be appreciated for my efforts to help others in our group.

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1 Melissa Deibel F.

Client Served

Rating: 5

I was diagnosed with Lyme Disease in August of 2016 after being misdiagnosed with Fibromyalgia for over 20+ years. The Michigan Lyme Disease Association has been a great resource for me! I have in the past and will continue to refer people to this organization. Thank you MLDA for everything you do for the Lyme Community!

1

General Member of the Public

Rating: 5

I just moved back to Michigan, after having my health decline severely out of state. I was bit almost 10 years ago and have seen dozens of doctors and have taken hundreds of vials of blood all for absolutely nothing. Because it was Lyme, now neurological Lyme due to its late diagnosis. I just moved back to MI to live with a family member, unable to work and went to my first support meeting with Khaya Davidson and Kim Cooney. I was SO blown away by how amazing this support group was! They had an amazing guest speaker and the crowd of people were fantastic to speak to. I was probably one of the more educated individuals there, in regards to Lyme and chronic illness, these people need these support groups so they can obtain more information from those that have spent countless hours on research. I need this group for support and guidance on doctors in the area. All in all, I was so happy I went, it was incredibly helpful and cathartic, Khaya and Kim are amazing and I'm so thankful for this support group. This disease is devastating and we need it desperately!

kcooney8

Volunteer

Rating: 5

When I was first diagnosed with Lyme Disease they sent me literature to understand what Lyme is, various treatments, how to protect myself and family in the future. They do educational booths to raise awareness, and work with other agencies in Michigan to determine highly populated areas with ticks and identifying what infections are current in Michigan. This is also important as Michigan is known for its tourism

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1

Board Member

Rating: 5

I had Lyme Disease about 25 years ago and it went into remission. However it came back about 4-5 years ago. In googling it I found the MLDA and allied. The president directed me to a LLMD (which I had no clue what that meant then). They also sent me a lot of information on LD and answered a lot of questions. I was also given a list of names I could contact for support sand eventually started a support group in my area. I wouldn't be here today if it weren't for the MLDA. They supported me at my lowest points and ow I'm able to give back. They also have an e mail support for those that prefer that way as well as many FB groups on Lyme Disease. It's great getting new info and communicate with someone who understands what I'm going through. I will forever be grateful for this non profit organization

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General Member of the Public

Rating: 5

This organization has been a wealth of information for myself and loved ones whom I am trying to help. I have called members of the MLDA multiple times and they have always been receptive to answering my questions, providing direction to websites to visit or books to read, I cannot say enough good things about the caring demeanor of Linda and others in the MLDA. They have never solicited donations when I have called, rather at every turn they have been completely dedicated to helping and providing information. A true definition of a non-profit

1 Chelsea18

General Member of the Public

Rating: 5

I do not have Lyme disease but this association has really informed me of the disease and what to look for and even how to educate others on what Lyme disease is. The MLDA has many brouchers and other informative materials. It truly is a great organization.

rocketdog

Client Served

Rating: 5

MLDA has been very helpful to me in negotiating treatment for my illness. They are a valuable tool for anyone in the state who has lyme disease.

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1

Client Served

Rating: 5

This organization helped me tremendously when I needed information about my illness. I received support I needed such as doctor information, treatment options, support groups and online forums. I have referred several people here as well.

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General Member of the Public

Rating: 5

MDLA does a great job providing research and information on a disease that is severly misunderstood.

Client Served

Rating: 5

Thank you to MDLA and Linda for being there to help educate the many thousands of people about Lyme Disease and Prevention.

General Member of the Public

Rating: 4

MLDA provides a wealth of information on all things Lyme related. I especially like their interest in homeopathic resources. As I've learned Lyme cannot be treated by conventional medications alone. Linda has been an invaluable resource and all the MLDA members owe her a great deal of gratitude.

pamela9

Client Served

Rating: 5

linda has been there for me over and over michigan lyme is great they help so many people thank you

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1

Client Served

Rating: 4

i feel very blessed to have this in michigan linda is wonderfull education is whats needed they provide that pam maize

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1 Teddi

Volunteer

Rating: 5

I've had and been disabled with Lyme Disease for 25 yrs. It is a most serious and complicated disease. MLDA is vital to education, fundraising, outreach, in MI. The president, Linda Lobes, is an extremely devoted worker who has been a much need resource and support for myself as well as many other patients, physicians and others in MI. I can't say enough positive things about this organization.

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3

Volunteer

Rating: 5

MLDA is a continual source of valuble information and support for myself as well as hundreds of others. I visit the online support group almost daily. Sometimes I ask a question or sometimes I just learn by reading input from others. It helps me to not feel so isolated ecspecially when I'm unable to get out due to fatigue or head pain. MLDA is by far my favorite non=profit group!

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Carrie28

Volunteer

Rating: 5

The MLDA is a wonderful organization with caring and dedicated individuals, who are a great resource for those who need help with anything to do with Lyme Disease and associated confections. We strive to raise awareness through many research campaigns, brochures and much more. All to often we provide support to those in need to many newly diagnosed patients and health professionals seeking additional information. Without the MLDA, many would struggle in knowing where to go for help or information on what Lyme Disease is all about. I'm happy to serve as a board member, in continuing to help educate the public and assist in much of the planning the goes on for the association.

Previous Stories
2

Board Member

Rating: 5

I've had lyme disease now for 18 years but took a year to get diagnosed. I was quite young at the time, 15 years old and my mom was desperate for help. We thank God every day that we came across the MLDA, and the president Linda at the time. She helped us immensely and has helped me to want to give back by joining the board. Without the MLDA, many people would be lost. They are THE best non-profit I know. I don't know where I'd be today without them.

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1

Client Served

Rating: 5

I can't tell you how many people I have referred to this organization. They do very important work raising Lyme Awareness, helping those who have been bitten by a tick or who need to be tested for Lyme Disease, testing areas for ticks/Lyme Disease and much more. With this disease prevention is so important so we desperately need MLDA!

2

Professional with expertise in this field

Rating: 5

This organization is a great source of support for patients and health professionals. They are unique in their ability to understand the importance of supporting research in their own state, as well as other states, and they have a proactive...professional relationship with all tick-borne health stakeholders. They do a fabulous job of educating the public and health professionals, too.

2

Board Member

Rating: 5

Next month (9-13-2014) will be 21 years with Lyme disease. ( Also had Babesia and Ehrlichia) I would not be here today. if someone from the MLDA did not help me. I was very ill and needed help. The ER Dr. said I would be fine and not to worry. I started volunteering early on. I am the secretary and the person who sends out all the information to those who ask. Over the last 21 years I have sent out tens of
thousands of pieces of literature. We do not charge for any of it. We pay for all the printing and postage ourselves. I am mostly homebound now but still send out information and do what I can.. Through the MLDA I have seen the education of medical personal rise, slowly but surely and it is all through the
hard work of the MLDA.

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1

Board Member

Rating: 5

When I got bit in 1993, there was almost no help from the medical community. I was so sick, most days I didn't know who I was or where I lived. The MLDA helped me in so many ways. When attending support group meetings, then board meetings I found out that they were the only ones interested in getting information to people. iI is hard to function and find information when your brain is swollen. If it wasn't for them, who gave me information to take to my doctor, I am sure I would probably be in a nursing home intead of now being a volunteer and "passing it forward" This is a great organization.

1 Martha V.

Client Served

Rating: 5

MLDA has provided my family and I with much needed information about Lyme Disease in Michigan and assisted with finding a Lyme literate physician. When someone else has questions about Lyme, I send them to MLDA.

1

Client Served

Rating: 5

When my son was diagnosed with lyme disease 7 years ago I had no idea where to turn. Thankfully I found the MDLA. The president was so helpful in finding a doctor and just general support has been great. We attended a MDLA support group that was active in our area for a while, and again, very helpful people. Always good information, always time to talk. Have referred many people to the group and always everyone is happy with the support they recieve. The leadership goes above and beyond the call of duty! Great origanization!!

1 2007robbie

Client Served

Rating: 5

When I have a question, or need to find a specialist who has seen other lyme patients, I can call the Michigan Lyme disease association and they are able to answer my questions or let me know where I may be able to find a dr.
I know of no other group that helps lyme patients like the MLDA.
Many people would suffer needlessly if it was not for the Mlda.

Previous Stories
1

Client Served

Rating: 5

I belong to a lot of different lyme groups on the net and via mail. The MLDA is one of the best. They work very hard to help others with this disease. They have a great phone support system, web posting site and even have some local support groups. Thanks so much to Linda and all of you who have supported me in the past.

2

Client Served

Rating: 4

There are no doctors from my area who understand how to treat Lyme disease. The infectious disease physicians do not believe chronic Lyme exists. Well for more than 2 years I have had it and now have proof positive with accurate testing. With help from Michigan Lyme Association I found a doctor who knows how to treat Lyme right in Michigan. Without their info I would still be searching...and sicker. I can't thank them enough and finally feel like I am on the road to recovery.

1

Client Served

Rating: 5

The Michigan Lyme Disease Association has given me lots of valuable information. It is great to get support from others who are going through similar things as I am.

Previous Stories
1

Client Served

Rating: 5

This is a great source for people who have Lyme Disease to get questions answered and have great support. Lyme can be a lonely illness because often you don't feel well enough to get out with others. The group provides the support that I need! I am glad that I don't have to feel alone!

1

General Member of the Public

Rating: 5

The Michigan Lyme Disease Association has maintained excellence in public education, support, and
advocacy in a very caring and professional way for many years. Education for the public as well as Lyme disease patients, support groups and individual support for patients, interesting and entertaining annual events to raise funds for the organization, sponsoring conferences, appeals to the state government for decent recognition of Lyme disease as well as education and care - these are only a part of what MLDA does. And the MLDA newsletter and the website are both very carefully organized and information is always thoroughly documented.

As a neighbor, in Ohio, who has spent years trying to do just a few of the same things MLDA does, I really know what it takes to organize and maintain such an organization that makes such a huge difference for people who are suffering. I am in awe of the MLDA.

1

General Member of the Public

Rating: 5

The Michigan Lyme Disease Assoc. (MLDA) is one of THE most helpful, knowledgeable, and compassionate organizations around. Our stories seem all to familiar. Countless Dr. Visits, years of being told there's not a thing wrong with you as you continue to deteriorate. This organization knows your story all to well. They are able to educate you on different treatments. The best thing... they are working overtime to educate those Doctors who have turned us away one to many times! I am so Blessed to have the MLDA a part of my life in fighting this disease!

Previous Stories
1

General Member of the Public

Rating: 5

I think all these 5 stars speak for themselves! I have never met an organization so kind and so well informed. If you have never suffered with Lyme's or do not know anyone it is a very scary disease to have. It attacks each person differently and therefore your symptoms may differ from the next person.

MLDA has been a blessing! From the simplest to the most difficult questions they always help in any way they can. It doesn't matter if your a member or not. They want to help everyone have a decent quality of life.

The MLDA far exceeds the 5 stars! Thank you for all your help this past year!

God Bless,

Beth



1 avalynn

Client Served

Rating: 5

Michigan Lyme Disease Association has been extremely supportive in our struggle with Lyme. MLDA has also been very helpful with Lyme awareness in our area.

Previous Stories
1

General Member of the Public

Rating: 5

MLDA has been a great source of help and support for my family. It's tough dealing with an illness that is not understood by the traditional medical community, but, knowing there are others dealing with the same issues has been a tremendous support.

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1 Molly32

Client Served

Rating: 5

The MLDA does a great job for the otherwise underserved Lyme Community. They provide support and information for a very difficult disease - one that is often misunderstood, both by the lay person and the medical community. They also participate in much needed research.

1

Client Served

Rating: 5

MLDA--where would I have been without you twenty years ago when diagnosed with Lyme? A five star rating is just the start for those who have struggled with this debilitating disease! This organization not only is a wealth of support for Lyme disease victims, but the educational literature, prevention awareness, forums, and conferences have been valuable to the medical profession along with everyone who enjoys the great outdoors in our beautiful state. For some, the journey with this disease is ongoing, and the encouragement and support from the MLDA through support groups, e-mails, on-line support, etc. cannot be surpassed. Thank you, MLDA members, for your labor of love and all that you do. My life will never be the same because of all your encouragement and support over the years. Lyme awareness has come a long way in our state because of your efforts. Sue G

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1

Volunteer

Rating: 5

My teaching profession took a major turn in 1994 when a minute tick, embedded in my chin, was removed. Life changed from that moment on. . .I saw 13 different doctors for various symptoms that changed almost daily, spent days lying on the couch that seemed like an eternity as no professional could diagnose what this "illness" was. The fourteenth doctor tested me for Lyme Disease which had positive results, and the treatments began. Symptoms became much worse than prior with the toxin die offs, etc. Who was out there that I could talk to, not knowing day to day if my life was going to soon be over? After ordering a book from a local bookstore, (nothing abailable in local libraries on Lyme) I discovered a support group about 30 miles from my home. Thanks to the MLDA and this group which was just being started in Michigan, I once again had hope and was encouraged, educated, and uplifted. Going through this valley without support would have been unbearable. Thanks to my good health at this tine, it is time to "give back" and assist the MLDA in educating and supporting those who are newly diagnosed, etc. What a life-line the MLDA has been in our state. The positive comments from hundreds/possibly thousands regarding the well-planned professional conferences, literature available to anyone, test kits, newsletters, etc. have saved many from ever going down the path that I did. MLDA - a ten in my eyes!!!!

1

Client Served

Rating: 5

The Michigan Lyme Disease Association has been a life-saver to me. Having moved back to Michigan two years ago from Virginia (I had to move back home with my parents because I am so ill with the disease), this group has offered support and vital information. Linda Lobes is there every single time you need her, and I have met some wonderful new friends who have become a big part of my life. Thank you Michigan Lyme Disease Association...and keep up the good work for those who are suffering!!!

1

Donor

Rating: 5

This organization has been a wonderful source of information and support for my struggle with Lyme Disease. They have helped me learn about the disease, and I have referred others to the site. The website is full of information, all up to date and very helpful. I am grateful and blessed to have met these folks, and to have them helping folks here in Michigan.

1

Client Served

Rating: 5

The Michigan Lyme Disease Association has been a beacon in the fog of living with Lyme disease. I have learned so very much about the various issues involved in trying to get a proper diagnosis and in trying to procure appropriate medical care. When a member has a problem, he/she can rely on other members to provide helpful suggestions. And, when it comes to knowledgeable leadership, Linda (the MLDA president) is the best. I am thankful for the support of the MLDA in my life living with Lyme.

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1

Client Served

Rating: 5

The Michigan Lyme Disease Association is committed to educating the community at large, and to supporting, and assisting those who are afflicted by the tick-borne illness, Lyme disease. Its president, Linda Purdy Lopoes, is knowledgeable, kind, and always available to help. Through the MLDA, I have become an informed patient. I have also found a group of very kind members who are ready to lend a helping hand, an eager ear, or a shoulder on which to cry. Annual fundraisers help defer some of the costs of meeting its goals. Monthly support group meetings are open to anyone who wants to attend. Newsletters are sent out once or twice a year. There is also a Yahoo! support group. Informational booths are set up by the MLDA at various events throughout the year (such as dog shows). The MLDA also sends out literature to medical professionals and participates in educational conferences so as to better inform doctors, nurses, etc on how to diagnose and treat Lyme disease.

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1 Michelle80

Volunteer

Rating: 4

This is a great non profit group that raises awareneness about Lyme Disease in Michigan. I like that 100% raised goes into the program & not into pockets. Mid Mi Lyme has been a god send for myself & my family, we have received valuble information & help. Im looking forward in paying back with helping out more & continuing to raise money for such a worthly cause. The people are friendly, kind & generous in making this a top notch non profit.

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1

Client Served

Rating: 5

Linda & MLDA has been a God send to me. I was tested in 1990 for Lyme Disease & Epstein Barr after i had a long bougt with Mono. I was in college at this time & extremly ill. My tests kept coming back as negative however my blood results were a complete mess. I went to college for a couple yrs while ill trying to finish my teaching degree. The road since that day began has been a complete & utter nightmare that still haunts me to this day. When u r active & outgoing then u transform into something u r not. A very long journy until finally Spring 2010 i finally was positive for both. It was a lot to take it.....i then contacted Linda & she saved me. A person who could relate & understand my roughly 23 yr journey to get to that point with answeres. Because of Linda & MLDA they helped me to get on track with a doctor & receive support as well as be a part of such a wonderful group of people. I & my family look forward to the yearly fundraiser that we attend. MLDA is a blessing & im so grateful to be apart of such a fabulous group all raising awarness & money for Lyme Disease. Thank you !!! Love & light, Michelle

1

General Member of the Public

Rating: 5

This is a fantastic organization. It is very informational and helpful to people with Lyme disease. It is free and it does not ask anything from anybody only to spread the word. It gives you the opportunity to help other people if you want to. I can't say enough good words about it.

1

Donor

Rating: 5

Having been involved with many non profits in many different capacities, I feel I can give a fair assessment of the MLDA. The president/director is knowledgeable, organized, energetic and caring. She goes well above what would be expected and is involved on a national level. Dollar for dollar the money raised is well spent on education and prevention of Lyme Disease. It is an excellent organization! I would highly recommend support and involvement.

1

Volunteer

Rating: 5

I am very thankfull for the MLDA. It is my only support and resources for lyme disease. Don't know what I would do with out it. It has led me to medical treatment, awareness, and medications. It has helped me with the businesses that support the cause as I have contacted them for things I have needed. Sandy Spencer

1

Volunteer

Rating: 5

My wife has Lyme disease and is very active in the organization. Thus I am able to see what MLDA does. It is the best source of information and help for people with Lyme disease. It has great guidelines and members. It is a model for other similar organizations to emanate. I am very moved listening to my wife listen and support a phone caller. And the same with fund raising events, they are worthy and self rewarding. If I had Lyme disease I would contact them as soon as I could. I know I would get the help I need.

1

Client Served

Rating: 5

This group is absolutely fabulous! I don't know how I would have made it without their help. Linda helped me find a doctor, one of the support group leaders was up late with me on the phone one night until the wee hours of the morning, and they are terrific whenever you have a question or need a hand!

Previous Stories
1

Client Served

Rating: 5

I don't know where I'd be today if it wasn't for the MLDA. I was going through the loop of doctors to find out what was happening to me, because I felt, literally, like every system in my body was going crazy all at the same time. I was getting test after test, but nobody could find anything wrong. I'd even been told it "couldn't be lyme because we don't have that in Michigan...". (Not only not true, but hey, it is possible that people do camp/hike OUTSIDE of Michigan, which was utterly dismissed.) They were so very helpful in helping me find a doctor to see if lyme disease was the cause of my problems, and so very kind in just listening to me. I was having a very bad evening one day, feeling really very, very bad, and one of the ladies talked to me at 10 p.m. for about an hour and a half until I started to feel better. In addition, they always call you back, which isn't something I can say for some other non-profits I've tried to volunteer for. Things are MUCH better now, and I know if it wasn't for this amazing group of people I'd still be getting bounced from doctor to doctor and getting the royal run-around.

1 Charlotte15

Client Served

Rating: 5

This organization has been everything to me. They have helped me move trough life with this horrible lyme disease. They helped me find a doctor when i was too sick to do it myself. They've helped educate me on prevention, and what to expect with my health for the remainder of my life. Their educational booths are better every year and i have helped with them now that i feel well enough. I have contact with their online support group every day. This organization is the best!

1

Client Served

Rating: 5

MLDA has been instrumental in helping so many people in Michigan. MLDA is effectively educating the medical practioners and public about Lyme Disease. Many Doctors are now recognizing the symptoms and providing the proper treatment. With more funding the MLDA can continue the great work it started. My wife had Lyme disease for years before being properly diagnosed and treated. The earlier it is diagnosed the less lasting effects on various parts of the body. Thank you for helping MLDA maintain its status.

1

Client Served

Rating: 5

We came here in MI no less than a year from Asia and my daughter had an unusual rash from an unknown insect bite. I've heard about this association and since then, it greatly help us determine the cause and the treatment that we will be undertaking. We got pamphlets ad things related to lyme so it could be prevented if we have it and the organization extends help to find the good doctor who knows how to treat the condition. It is truly a life- saving, tender- loving organIzation that i hope would exists for a long time. Thank u for helping my family!

1

Client Served

Rating: 5

When I first found out about the Michigan Lyme Disease Association I was in quite a bit of pain, suffering from 4 or 5 migraine headaches per week, and every doctor that I had seen was unable to find out what my problem was. I had already seen 19 doctors and 9 Specialists, spent thousands of dollars on medical testing, and the only thing the doctors all agreed on was that "something was wrong with my immune system". I was depressed, and had been unable to keep any job due to my poor health. No job means no health insurance, no money, and ultimately - no medical help. One day, I was at an event where the MLDA had a booth set up, with photos of the Lyme disease rash, the tiny ticks, and other information. As soon as I saw the photos, I KNEW that I had Lyme disease. One of the people from the MLDA was at the booth, & she immediately came over to talk to me. It was such a relief to know that other people understood what I was going through, & that I really was ill and not just "making it up to get out of going to work". I have talked to some of the MLDA members by phone, and it is very comforting to know that they are there. I have also joined their Yahoo group, & I have learned excellent information from the group members. I am very thankful that they are here for us.

1 Carol F.

Professional with expertise in this field

Rating: 5

The MLDA for as long as they have been a 501c3 has been active in helping others through education and awareness. They spend countless hours reaching out to others with education and awareness of the devistation that can come with Tick and other Vector born illness. They work very hard to raise the funds to be able to carry out this much needed work. I hope they will be able to continue their work for as long as their work is needed. That need will continue until the unforseeable future. Carol Fisch, Adjunct Professor Emeritus, Microbiology background...Advocate, Activist and Victim

1

Client Served

Rating: 5

If it hadn't been for the MLDA, I would never have gotten the information I needed or a list of good doctors to go to for treatment of my mine or my son's Lyme Disease. I was also able to give out helpful information to family members as well thanks to the help of the wonderful people there. I am so appreciative of all their support, information and helpfulness. Thank you, MLDA!!!

1

Client Served

Rating: 5

The Michigan Lyme Disease Association has proved to be a beacon of hope for me and my family. I was diagnosed with Lyme disease and associated co-infections in May 2010. Along with the diagnosis came confusion, controversy with my doctor and complex treatment regimens. I found Michigan Lyme Disease Association (MLDA) through a website search and immediately joined my community's chapter. My family members brought me and attended the meetings as well. It was immediately apparent that I was among caring, compassionate and extremely knowledgeable people, specifically MLDA's president and our chapter's facilitator. Becoming a member of the organization has had a profound impact on my life, both physically and emotionally. The president's accessibility is beyond impressive as I feel comfortable calling her any time I need guidance in how to traverse through this world with Lyme disease. MLDA's positive impact reaches beyond those of us with Lyme disease; its mission encompasses awareness of this debilitating disease, de-mystifying misconceptions and involving Michigan's doctors in training to become Lyme literate. Endorsing the MIchigan Lyme Disease Association will help ensure that the residents of Michigan have access of cutting-edge research and daily living support. My family and I LOVE MLDA!

1

Board Member

Rating: 5

MLDA has been the only hope and only place to turn to for anyone with or anyone who knows someone suffering with Lyme. As a mother with all 3 of my children having Lyme Disease times can be hard. It is because of the MLDA and Linda that we given any direction at all on how to help them to get better! My oldest son was very ill and still after 3 years of treatment is still fighting this disease daily. It is all because of Linda and the MLDA that we were able to even know where to start to even treat him. Our family owes the MLDA everything! The health of your family is the most important thing and the information and support that is given and offered by the MLDA is second to none!

Previous Stories
1

Volunteer

Rating: 5

Tell your story here and help others understand this charity It scares me to death to think of where we would be if it had not been for Linda and the MLDA! After seeing dr after dr and had test after test ran on my son to come up with nothing over and over again and to watch him get sicker and sicker, to then be put into contact with Linda and MLDA who gave us hope and direction and support! Linda was able to lead us towards the right direction in getting our son's health back on track and finding out what he was struggling with. We owe our son's health to Linda and the MLDA! The knowledge and the support that has been giving to us by the people behind the MLDA has been so important and needed in our time dealing with this disease. Our journey is far from over but I'm not as scared of the out come knowing that we have Linda and the MLDA helping us with every step forward! Our family thanks them for the bottom of our hearts!

1

General Member of the Public

Rating: 5

As a person who has suffered with chronic Lyme for over 4 years, I have found the Michigan Lyme Disease Association a wonderful resource...of information, kindness, empathy, and advocacy. In the initial stages of treatment, I was incredibly fearful and the MLDA, and in particular its President, was kind enough to allay my fears and answer my questions. As part of the Yahoo! group, another active member (Khaya) continually monitors the mail and offers tremendous support to the members.

1

General Member of the Public

Rating: 5

I have found many good tips from this group of people (The Michigan Lyme association) Since I was diagnosed with Lyme back in March 2009. The sponsors that have pulled this group together have so much information that they offer to help you not only heal but also have a support group for not so good days and you need to find answer's to problems you maybe experiencing. I have met many amazing people with this same illness and I thank the Michigan lyme Asscociation for all the support they have given me. Michele

1

Client Served

Rating: 5

I found out I had Lyme in May this year. I was directed to call the MLAD. I believe I spoke with Linda, the president of MLDA. She was beyond an amazing help. I was very sick and scared at the time and she was very comforting and supportive. On my own I was unable to find a doctor with anyreal first hand knowledge of lyme. Linda found me a doctor and even made the appointment for me. She also called back later to check on me. I can truly say I don't know where I would be today without the help if this organization. I am incredibly grateful for all their help.

2

Professional with expertise in this field

Rating: 5

To: GUIDESTAR
From: Judith Weeg, President and Tracie Schissel VP LDUC

The Lyme Disease United Coalition would like to nominate our sister group, Michigan Lyme Disease Association for your $5000 grant/prize in your 2011 GUIDESTAR-KIMBIA nonprofit giveaway. The leader of the MLDA is Linda Lobes, one of the hardest working and most organized leaders in organizations in the U.S. She has numerous Lyme disease chapters in Michigan, and all are running in concise, but caring order. She has had several events, throughout the years, and works well in educating the public regarding Lyme disease (Ld) and involving governmental agencies in coming on-board to define the epidemic in Michigan.

We are honored to know Linda Lobes and Michigan LDA. We nominate, highly, MLDA for this prize.

1

Client Served

Rating: 5

Michigan Lyme disease Association has helped me in many ways, from helping me find a good doctor to educating me about Lyme through support groups. The groups also provide social connection and support, both in and outside the regular meetings.
They also raise awareness of Lyme disease in the community and state.
I would feel so alone if I didn't have this group.
Thank you.
Linda Lloyd

1

Board Member

Rating: 5

The MLDA and Linda Lobes saved my son's life! He was very sick and getting sicker by the day and after seeing many doctor's and many tests no one could find what was wrong. Linda took the time to talk to me and help us get some answers, directed us to a Dr that was finally able to test my son and help him. That was almost 2 years ago, and still struggling daily with Lyme and Co Infections, my son is at least doing better.
And because of the help and the knowledge I have learned from the MLDA, I was able to see the signs and get my 5 year old son tested before he got very sick and found out he also has Lyme and now is being treated.
If it wasn't for this group my 9 year old son would be at the point now where he could not function, before we got him treated he was getting to the point where he was unable to walk or think. It was the scariest time of my life. My husband and I owe everything to the MLDA, Linda and this group saved my son's life!

The knowlegde that I have learned from the MLDA has helped me, help other people in need also. I have been able to guide people that were sick with some of the same things and get them help along with being able to teach people who don't know anything about Lyme so they can protect themselves and their families.

1

Client Served

Rating: 5

I was recently diagnosed after many years and many doctors. Linda Purdy was instrumental in guiding me through the web of choices to make, offering her wisdom and experience. She was positive and supportive and really helped in my decisions regarding the treatment I ultimately chose.

Review from Guidestar

1

Client Served

Rating: 5

When I was first diagnosed with Lyme Disease, I wasn't sure where to go for treatment or anything about the disease. MLDA has been so wonderful -- they helped me find a doctor who fit my needs, they helped me find treatment for my son when I found out he also has Lyme Disease, they offered support, and much education. I don't know what I would do without them!

1

Client Served

Rating: 5

When my wife first had Lyme Disease she had many questions and needed help. At that time, especially, there were not many people or physicians knowledgeable about her chronic illness.
This organization has provided her with a monthy support group, newsletters and an 800# she can call anytime with questions. It has also allowed her to be involved in fundraising and attend educational workshops.

1

Client Served

Rating: 5

I greatly appreciate all the information and support this organization has given me and my family. The information provided by MLDA has helped us in making the important decisions for our care, which has resulted in us returning to our normal routine.

Review from Guidestar

1

Volunteer

Rating: 5

The MLDA is a very important and worthwhile organization for individuals in Michigan. This is the only organization that provides a source of valuable information and education to the public to make them aware of the issues with Lyme disease and other tick borne illnesses. The organization works hard to get the word out to individuals, doctors, nurses, etc by sponsoring seminars, raising funds for research and holding support group meetings. The MLDA also publishes a newsletter that contains valuable information on Lyme treatments and stories of many patients that have Lyme.

Review from Guidestar

1

Client Served

Rating: 5

The MLDA is an organazation that has been there for me and my son whom also suffers from Lyme disease. They go behind and over the call of duty in regards to helping people who have lyme disease and other tick borne illnesses. I found this organization within months of believing I may be suffering from lyme disease. I too have been down the road of the unknowing and undiagnoised. If it wasn't for the help and support of this organization I not sure where I would be today in regards to diagnoises and finding the right care. Thanks you MLAD

Review from Guidestar

1

Volunteer

Rating: 5

I have found this organization to be above board and always giving of the respect that Lyme Disease patients should receive. They have tirelessly helped these patients in all realms of their needs, with guidance, doctor referrals, pamphlets and even a phone number where more help can be received. Thank you Michigan LDA, you have been a Godsend for those afflicted in your area of the Country.

Review from Guidestar

1

Professional with expertise in this field

Rating: 5

I have known Linda and Michigan LDA for almost all of my 21 years in Lyme Disease advocacy and patient education. I have the utmost respect for Linda and her group. They never succumbed to the sabotage, undermining or other political games played by far too many in Lyme advocacy. They are always honest, accountable and put the patients first. A model for any organization, they strive to not only educate and promote awareness among the public and patients, but also provide much needed support and education to the patients and caregivers directly. Linda has never denied help to anyone, even if theyre from out of her state. She administrates with a goal of team effort and has mentored many in leading their own group. The only negative is that there arent enough groups like this in the Lyme Disease Community

Review from Guidestar

1

Client Served

Rating: 5

Linda and other folks at the MLDA saved my sanity early on in my treatment. I was lucky enough to have a neighbor familiar with the organization and give me the phone number during a time when I was very very ill.
Over the years I have participated in MLDA support club meetings, Fundraisers and Educational Conferences. And whenever I need help they are just a phone call away.
I have referred many "Lymies" to this group. Everyone is very helpful and the on-line support group can be a life saver.
It's difficult to have any Chronic Illness - but when you have an illness that is misunderstood it's espeically traumatic. The MLDA understands this as most (if not all) of the members have Lyme and related diseases.

Review from Guidestar

1

Client Served

Rating: 5

I have received multiple services such as information, referrals, and emotional support from members of the Michigan Lyme Disease Association for many years. I have been living with chronic tick-borne diseases (including Lyme). If it weren't for the continuous support of this organization, I doubt that I would be doing as well as I am today. Although I am not from Michigan, the nation-wide, toll-free line is just a phone call away.

I can't recall how I was made aware of the Michigan Lyme Disease Association, but I consider myself a lucky person to have found this caring and dedicated group.

Mimi

Review from Guidestar

1

Client Served

Rating: 5

I don't know where I would be with out the help of the MLDA, When I found out that my Lyme had come back after 5 years, I didn't know what to do. I went to website and found phone numbers for support groups. The Support group leaders put me in touch with the right doctor and gave me strengh to get through it. I believe there work makes a huge difference in the lives of others. It did in mine, Thank you for all you do.
Sincerely,
Carey

Review from Guidestar

1

Client Served

Rating: 5

MLDA provided invaluable information at a time when I was scared, frustrated and barely functional. Linda was such a blessing, providing me with knowledge, referrals and most importantly HOPE! I was disabled for 5 years by this nasty disease... But persistence and some excellent medical care has allowed me to go on to graduate college, work full time and get married!!! Thank you for helping me get my life back!