Lyme Disease Support Group

Hello, I am from MN and was diagnosed with Lyme disease in June however I have had symptoms that I have been dealing with for the last 3 years. I would really like to connect with others to get suggestions on what I should do as I am very frustered with doctors not wanting to treat the lyme disease.

Hi Cheineman,

Welcome. Your experience is very similar to mine. I was also diagnosed in June of this year. I've also been dealing with symptons for the past 3 years or more.

I was very frustrated with my primary care doctor because she didn't believe that I had lyme. I finally went to a doctor who was recommended by another lyme patient, which is when I was diagnosed with chronic lyme. He started treating me right of way.

The doctor who diagnosed you for lyme doesn't want to treat you for lyme? I would try and find a doctor that will help you. That's crazy that they would diagnose you but not want to treat you. Amazing?

There are alot of people on here that will help you. They are full of information and are always willing to help.

Please take care of yourself.

Well she thought the one dose of treatment was enough. She also said that the levels I had in my system were not enough to have had lyme for that long. I have had severe pain that started in one leg that burned, shooting pain down my leg into my foot. Moved to the other leg and then into my one arm. I started having the shakes in my hands and was dropping things all the time. I would feel stiff and my knees and hips started to hurt. There were days my legs were so bad that my husband had to carry me to bed. I also had the "brain fog", muscle twitching, slight swelling in my leg and temperature changes in my leg as well. 2-3 weeks before the symptoms started I had been camping with friends. My symptoms just got worse and worse until the Doxy. I have started noticing that I am forgetting things, having trouble concentrating and feeling like I am out of control. I feel like I am fighting with the doctors to make me better. Thanks for the note.

Ya need to get to an LLMD - PM Connie, Clayton, or Jamie. They have lists of LLMDs - just let them know where you are and how far you can travel - as some of us have to either leave the state or at least travel to the other side of the state in which we live.

What you have described does sound like you have been effected neurologically...so it is important to get to the right doc asap.

You also need to educate yourself with the facts - and learn to recognize the BS. And there is a LOT of both out there...coming here is a great step for you, as far as info gathering, and connecting with others.

As far as treatments - be open to both conventional and natural protocols...different things work for different people.

While you are searching for a doc, I would suggest you make dietary adjustments, if you havent already. Cut out the foods that are going to feed the disease and increase symptoms. Sugars (the bad kind) and Gluten (breads/pastas) can do this to you. There are some great alternative foods out there - and a diet high in fresh fruits and veggies cant hurt. Water - plenty of plain water is good too - half your weight in ounces a day...

With this disease, you have to be in charge of your health, and be assertive and firm with the routes that you want to take. Many docs wont take the time to learn what is really going on with this disease, and would rather play russian roulette with our lives. Never accept that. Read through the older posts, and that knowledge as your ammo...

Good luck and take care...

Christine

I would not have guessed that food could affect it. Do you know of any other things that may help?

Thanks.