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.
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.
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
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
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.
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.
MDLA does a great job providing research and information on a disease that is severly misunderstood.
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 feel very blessed to have this in michigan linda is wonderfull education is whats needed they provide that pam maize
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.
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!
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'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.
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.
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.
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.
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.