Michigan Lyme Disease Association

I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, There has been little if any progress in finding a cure or reliable treatment. Acupuncture eased my anxiety a bit. Our primary physician recommended me to www. kycuyuhealthclinic. com and their amazing Lyme treatment. My symptoms including chronic fatigue, joint pain and rash, disappeared after 4 months treatment!  The herbal treatment is a sensation.. My Lyme disease is totally reversed! Their official web page is www . Kycuyuhealthclinic . com this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier

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

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.

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.

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!

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!

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

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

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.

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.

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

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

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.

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

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.

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.

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!

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.

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.

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.

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!!

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.

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.

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.

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.

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!

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.

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.

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

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!!!

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.

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.

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.

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.

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.

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

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.

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!

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!

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.

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!

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.

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

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!!!

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!

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!

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.

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

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.

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.

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

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.

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.

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!

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.

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.

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.

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

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.

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

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.

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

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

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!

A great organization with friendly hard working people. They really make a different by giving support and helping educate people about lyme disease.

This is the only organization in Michigan with connections to the kind of expertise needed for treating the secret and highly political Lyme Disease epidemic which is present in Michigan! And they do a great job of providing education and services to any who need it. Thank you for saving my life!

At age seven, I watched my high-energy, loving, and creative mother become so ill that she wasn't able to do any of the things she used to do with me. One doctor after another sent her away with inconclusive results, sometimes even neglecting to be honest with her about the results of her Lyme Disease tests. After a hospital stay and a few months of being terrified that I would lose my mother, she was finally diagnosed. It was Lyme - a potentially incurable and controversial disease that was practically unheard of in our area at the time. I am so thankful that she found the Michigan Lyme Disease Association. When someone is diagnosed with a disease they know nothing about, a knowledgeable organization to provide education about the disease and its treatment, as well as an emotional support network is immeasurable. The MLDA allowed my mother to find the best Lyme doctors in our area and educated her through the medical conferences and other resources it provided. She also found purpose by writing for the MLDA newsletter, which is distributed several times a year to keep its members informed. The MLDA is the only organization of its kind in our area, and provides support for so many people directly or indirectly affected by this disease. She may never be cured, but I have no doubt that if it weren't for the MLDA, she would not be where she is today. This is a GREAT organization!

My wife contracted Lyme Disease in 1994 and since that time the MLDA has been a great source of information, go wonderful support group and the "go to place" to find out the latest in the fight against this terrible disease. Thanks MLDA!

My family’s lives have been “ravaged” by Lyme Disease! In 1991, my symptoms first appeared: tingly feet and hands, poor balance, dental problems, face “dragged”, left side of body very “off” and it felt like sand in my eye, etc. I didn’t have a family doctor and the immediate med doctor said “an allergic reaction… tries these pills”. No luck! The next doc said "See a neurologist ASAP". I didn’t. Instead, I began extensive research at the local library. (No internet back then!) I concluded that I probably had multiple sclerosis and what I was experiencing was a “flare-up”. Another flare-up would probably nail the diagnosis! At that time there was not a good “test” for MS, nor treatment. (I believe this is still true today!) The next year, the flare probably came, but I ignored it. My vision went double for a few hours, but I pretended it happened because of new glasses. Soooooo in 1996, the BIG flare came. If I looked at you, it looked like you were jumping up and down. The neurologist…I had evaded so diligently… was now in front on me saying I had nystagumus due to multiple sclerosis. A MRI the next week “nailed” the MS diagnosis. Lesions in my brain. (We later learned Lyme does this too.) So darn! I figured I had guessed right, but my husband didn’t give into the diagnosis and found a doctor that said “get your silver fillings out of your mouth”. Silver fillings (amalgams) have a great deal of mercury in them which is very toxic to the body. After the amalgams were drilled out (a real process!), I began chelation to rid my body of residual metal. After just a few treatment, I was dying. Seriously… dying! I could barely see, walk, talk, ect.! (Oh, My!) Luckily, my then 8th grade daughter found Dr. Lida Mattman on the internet and the article said MS was caused by a bacterial infection. We had Dr. Mattman test my blood and the infection was called LYME DISEASE! We thought this was the end of the story…I would be okay and all would be well. Nope! Shortly after my Lyme diagnosis, our 5 year old Black Labrador Retriever began losing his hair, hiding behind chairs and having seizures! My husband’s research pointed to Lyme. We finally found a vet who prescribed antibiotics. Jet’s seizures stopped almost immediately, but he died a week later. He is my hero! Because of what happened to Jet, my entire family was tested for Lyme Disease. Our entire family has it! Today, June 25, 2010, we are all much, much better. The Lyme is still with us and “shows up” in curious ways, but we have the “tools” to fight it. Our present dogs are vaccinated against Lyme and one just turned 11 years old. The dog vaccine works. YEA! During our many years of knowing we had Lyme and finding ways to combat it, Linda Lobes and the Michigan Lyme Disease Association has been there to help us. Lyme can be a very lonely disease. Having people who have “been there” has helped immensely. Today, my husband and I “pick up” people almost daily because we think they could have Lyme Disease. Most think we are nuts, but a few have listened, got help, and are getting better. We see this as our way of giving back for the help we have been given. Thank you for reading this.

This organization is the life blood of Lyme patients in Michigan. Support, education, and advice on appropriate health care providers is critical to anyone experiencing Lyme disease. Kudos to Linda and the organization for all the tireless hours getting the word out.

I got to know Linda and the Michigan Lyme Disease Association through my friend, who had contracted lyme disease. I have appreciated the awareness and knowledge that has been shared about lyme. Linda gave a lyme disease presentation to my outdoor club several months ago. She shared a wealth of valuable information with us....and really opened our eyes to the terrible effects of the disease! Kudos to all of her neverending efforts!

I have been a board member for some time. I initially attended meetings to have access to lyme information to distribute to my support group. Now it is relatively easy to get information on the computer and through Michagan Lyme Support. I've learned of these sites through the MLDA. The MLDA does a valuable service by getting information out to the public about the disease and its treatment. Linda is always available to answer question and to help people find a doctor to treat them. The MLDA is a valuable resource in our state for getting information out to the public, health departments, and so many more. Without the MLDA,lyme disease would still be in the dark ages.

6-17-10 I am a native of Rockford Michigan. I became very ill in 2003, I had seen nine differnt Doctors ranging from Cardioligist,Neuroligist,Uroligist and on and on for a period of a year and a half. I was in excellent health before then. No doctor could figure out what was wrong with me. I became very depressed and ready to take my own life. In 2005 I was told of Lymes Disease. That is when I heard about Michigan Lyme Disease Association. I called and talked with Linda Lobes, she saved my life. Linda and her staff are a GOD SEND. I would not be here today without there support. Thank You, Jim and Kelly

I have had Lyme Disease for 14 years, diagnosed for 13. With no help from the medical profession in the Grand Rapids area my parents and I looked to the MLDA for answers and help. The president, Linda, has been a God send to us helping with all of our questions answering phone calls and directing us to appropriate doctors where I finally received help. I wouldn't be where I am now if it wasn't for her and the staff. The MLDA offers so much information for those who are simply concerned or have been diagnosed and struggling. Anytime I have questions I never hesitate to call because the MLDA is the best support you could ask for and has more knowledge than any other group I have worked with. I don't know where I would be with out the MLDA.

I was diagnosed in 2004 with Lyme disease. I had been misdiagnosed for over a year with Chronic Fatigue Syndrome. Completely debilitated, I called MLDA. I was given excellent support and referrals to area doctors. MLDA gave me hope and direction when I had neither. Lynda Lobes and the board continue to serve the Lyme Disease patients in MI by offering conferences, support groups and phone support.

I have found the MLDA to be an excellent resource to myself as a Lyme Disease victim. I have found the conferences ecspecially educational, and appreciate the fact that lay persons as well as physicians, researchers, and other professionals are highlighted, and invited. Occasionally, I am able to attend support groups which are invaluable to my mental health, as it is a chance for us to be among our peers, and encourage each other. The MLDA is deserving of any recognition it receives.

I have been a Board Member for about 3 years now as I was so frustrated to find out a diagnosis for my "multi symptom illness". I had the help of the MLDA to access a doctor after 16 years, there was a possibilty that I had Lyme. I had the bulleye rash in 1983 following a camping trip to Nashville, Indiana. At the time, I worked for 2 Surreons and they sent me to every Dermatologist in Genesee County. From there, i was sent with my dogs to the Vet for the possibility of "ring worm". Our Vet told me that was out of the question and whatever I had, please don't give it to the dogs as he would have no idea how to treat it. The rash finally went away, but for the next 16 years I had severe arthritis pain, plantar faschitis, right hamstring pain, off and on again acute right sciatica and finally migraine headaches. During this time, my family doctor did blood work testing for Lyme 3-4 times with only "iffy" results. Finaally in 1999, 4 bands came back positive, the second time, for Lyme and I was started on antibiotics. I then was put on a waiting list for a Doctor in Saginaw that treated Lyme. After a couple months, I called MLDA, frustrated and crying as I felt I was at the end of my rope. Through the last 10 + years, I have asked the President of MLDA, Linda, many questions that she has always had an answer for. I have never called without receiving a return call. MLDA helped me get in to see the Doctor in Saginaw and has helped me through many crisises in this period and that is why I went to an annual meeting out of curiosity apprx. 4 years ago. One thing lead to another and I became a Board Member. I do the best I can to help educate the public about Lyme and help out on as many educaational projects as I can. At the present time, my Lyme is in the fibromylgia stage and I tire easily along with the constant pain. Going to the monthly Board meetings gives me the support I need to keep sane. Thank you MLDA Sally Lurvey

I was bit by a tick while mowing my lawn in the summer of 2006. I became very ill, very quickly. Even though I had all the symptoms of Lyme disease, my family doctor was reluctant to treat me for it because the rash was not a typical bullseye. I was able to contact the Michigan Lyme Disease at it's toll free number and I spoke with the president, Linda, who gave me the name of a doctor who specialized in the treatment of Lyme. The doctor and support groups formed by others with Lyme disease in my area helped me to get through 3 very long years of recovery. Without them, I would still be very ill and very depressed. I am feeling better now and am grateful for all that was done for me. I now volunteer for The Michigan Lyme Disease Association when I can. Thank you MLDA and everyone involved!

I struggled for years with an unknown auto-immune type disease. I kept getting worse. I stumbled upon information about Lyme disease and knew I might be on to something. I contacted the MLDA and was given a list of doctors in my area who could help. I also found out about a local MLDA support group that meets in my area once a month. I have been diagnosed with Lyme and am currently in treatment. I don't know what I would have done without the kind efforts of Linda and Sue. They talked me over a couple of humps and helped me to realize I am not alone in this battle. They give so much to other sufferers of this disease. I can't begin to thank this group enough. I also gain much info from the MLDA group emails. It's still a struggle for me. Someday I hope to be well enough myself to help others through this wonderful organization and to help inform the public about Lyme disease.

In June 2008 I found a small bull's eye rash on my leg. Took a picture of it as I did with the bug bite reactions my kids have had from our own backyard in Canton, MI. I don't remember feeling like I had the flu but a short time later I started have bad pain in my left knee that spread to my right knee, my elbows, and shoulders that would move around and burned. Initially I was told I had a thyroid problem. So I went along with that until I over several months I went through these symptoms: heart palps, not being able to breathe at night and pacing the floor, my brain would scream to shut out the noise, jaw and ear pain, not being able to focus on what people were saying or being able to stay focused on reading, ulcerated uvula, tightening in throat, completely exhausted, twitching/spasms on left side of face, etc. So I began to do some research of my own online about my symptoms and thought maybe it might be lyme disease. That's when I remembered the picture I took of the rash. I remember feeling stupid thinking that it might be lyme disease because I didn't think it could happen in lower Michigan. I was afraid people would think I was a hypochondriac. In my online research I came across the Michigan Lyme Disease Association website where I found contact information. I emailed my digital photo I had of the rash and I think it was only a day or two before Connie Siese replied. I had asked her if she thought this might be from a tick bite and if I should bother getting tested. She was so kind and nonjudgemental in her response back to me and encouraged me to find a LLMD to get tested. Her encouragement helped me overcome my fear of being labeled a hypochondriac and I did get tested. I've been diagnosed and treated for Babesia. Thank you to the MLDA for their encouragement and support through the yahoo chat and facebook too!

If it wasn't for the Michigan Lyme Disease Foundation I would still not know what was wrong with my son and he would still be ill. They helped in so many ways to get him back to the road of recovery. As a mother it is so hard to see your child suffer. The MLDA directed me to a doctor that helped him right away. The MLDA provides information to many in the state of Michigan and gives them help in so many ways. Just letting the general public about Lyme Disease and how to protect themselves is huge! The work the MLDA does is beneficial to many people in the state of Michigan.

I have been recently diagnosis with Lyme disease in 2010. In researching the internet I became so overwhelmed I felt hopeless and coping became difficult. I made a call to the MLDA and received direction and courage to deal with my disease. If it hadn't been for the angels voice (Linda)on the other end of the phone telling me You Can Do This I'm not sure what my state of mind would have turned into. Linda, not only talks the talk but walks the walk as she has dealt with Lyme disease herself. I can't think of a better person to be doing this job. She didn't even know who I was and yet spoke to me as though I was her closet friend. She's one special person.. One In A Million in my opinion! I don't know how she does it but she know when to Kick into action even with a stranger. Because of the MLDA my outlook in dealing with this disease has given me hope and the state of mind I need to recover fully! She is always there lifting others up with courage and wisdom when ever needed. MLDA goes beyond the call of duty in my opinion and for that I'm so very grateful they are there! Juli

My smyptoms started developing in 1976 after camping with 10 million ticks in Ada, Oklahoma on a horse farm. I began my rounds with all the various doctors until 1986 when I received the news I had all the signs of classic MS. I lived with this 'cloud' hanging over me until 2005 when I was unable to spell my daugther's name on the tax forms. My husband began frantically contacting doctors, medical schools and researching the internet for answers. While online he found a tiny thread of information that eventually led him to the Michigan Lyme Disease Associastions and my lifeline. The MLDA helped me locate a wonderful lyme-literate doctor and provided me with a group of people that offered a wealth of knowledge from their own adventures with Lyne Disease. Without them, I honestly feel that this disease might have beat me into nothing. Thanks to the MLDA for my giving me my life back.

The Michigan Lyme Disease Association is an excellent organization and was a great resource for my family when my brother became ill. After a year with no diagnosis, it was my mom, not doctors that discovered it was Lyme disease. When my parents couldn't find a doctor in the area that would treat a child, the MLDA provided the name of a doctor.

The organization is lead by a woman who has Lyme, is an excellent advocate, and passionate about helping others.

The goal of the MLDA is to create awareness for Lyme, not only for the general public but the medical community. Because the disease mimics so many others and the medical community isn't as aware of it's presence, this organization is extremely important.

The MLDA provides newsletters that contain valuable information on Lyme treatments and share stories of people's battles with Lyme. They also put on several fundraisers each year, have support groups, and attend numerous events to generate awareness. The MLDA has hosted several conferences in which they bring in a variety of speakers from the medical community as well as an attorney who speaks about the disability rights people with Lyme have. These conferences have been very beneficial to me personally by helping me to understand all of the challenges my brother and those suffering with Lyme face.