16 years with possibly undiagnosed Lyme, my body is getting worse, what do I do next?

Hey, this is a long story but I would love your advice. I would love to hear about your own experiences with lyme. I would like to preface this by saying I have talked to hardly anyone about this, and have felt the struggle alone for some time.

I am in my late 20s. I have had significant health problems for 16 years, but I never fully understood it. Then, when i happened to be watching a documentary about punk music a couple months ago, it was like a light turned on. I saw a woman, the lead singer of Riot Girl, who looked like me. Had my same facial twitches, same eye movements, complained about the same symptoms I've been dealing with, seizures, stomach, episodes of forgetfulness. I felt like I connected with her. It made me not feel alone to know someone else dealt with the same thing I do. At the end of the documentary, she said she had lyme disease. I was like "WOAH, this never occurred to me. I wish I knew about this before". But I connected so strongly with this woman's story, it gave me hope.

Now I am wondering what I can do. You see, I had an infected tick bite as a little girl (bullseye rash) and no one let me go to the doctor then. I didn't know anything about lyme back then, so the rash went away after several weeks and i didn't even make a connection about it. But when i was 11 the symptoms started--- I had severe trouble in school, short term memory, was constantly getting in trouble for not obeying chores or not getting through math. ( i was a good kid just forgot things constantly, even forgetting siblings names at random moments) I struggled through school, but made it through. Found I can sometimes pick up more information if I see it in action instead of reading it. Was diagnosed with "ADD" & learning disabilities, put on ritalin. But ritalin didn't really help me. I Still had the same symptoms of forgetting constantly. I had sever migraines and vomiting once a week, and episodes where i pass out and am tired all the time. My parents were **** up and assumed it was adolescent depression, made me see therapist but i was a pretty happy kid. Just tired all the time and wanted to sleep instead of running outside to play. I found out i would faint if i ran too fast so i was always trying to save my energy. At summer camps every single time i went id get sent to nurses office because of heat exhaustion and vomiting.

Then a couple years after that i had heart trouble. My heart was beating slower when i moved than when i sat still. I had to wear a heart monitor for a month, was in and out of the hospital. They said my blood pressure was dangerously low and put me in the hospital for several days. They eventually couldn't explain what happened, to this day I dont know what was wrong.

After that was my spinal cord. They diagnosed me with scoliosis (curved spine) and i have major back trouble unless I am very careful. They told me I have Multiple Schlerosis symptoms but later confirmed it wasn't MS. But still... an isolated incident, right?

By 17 I started having seizures and more passing out. Still, i assumed it was a normal thing because my grandma and aunt, cousins all have epilepsy. When i got to college I had to quit 2 semesters in because I came down with mono and my doctor told me to be on bed rest for 3 months. I barely kept up with my job because i was so tired all the time, had to leave shifts early sometimes because of passing out at work.

16 years after it all started I am still suffering! Most recently, the last 6 years I have had stomach issues all the time and haven't been able find relief. All of the above has been affecting my ability to function and have a normal life. i do administrative work and have trouble getting through meetings because I can't remember what someone says right after they say it. It takes voice recording, and furious note taking, plus asking for others at the meeting to send copies of their notes to me, for me to keep up. My wall at home is like a giant bulletin board of reminders. I am constantly tired from trying to keep up. Hormones also very irregular, missing for months at a time. I eat very healthy and exercise. I get plenty of sleep so I dont think its stress.

Now that I know this might be caused by Lyme, I am wondering what I can do to take action and try to get my life back? Is late stage lyme even curable? It has been so long, I cant even imagine being able to have a good memory or normal body again. BTW--- I tried talking to my neurologist about lyme but he is pretty closed minded because i already have epilepsy he thinks---i hear this is common for doctors not to listen. I am not convince that its epilepsy. I just don't know what to do next.

I would love to hear your own experiences with Lyme. Again--- i have talked to hardly anyone about this struggle, I don't like complaining and im not hypocondriac. I have denied myself answers for 16 years. I would love help!

Ruth - So sorry to hear you've been dealing with these health issues for so many years!
I have not suffered as long as you - I've been trying to get a diagnosis for 9 months now.

Please see a LLMD or LLND and have a blood test through Igenex labs done. This is the best test to find out if you have Lyme disease.
You need a LLMD or LLND - regular MD's do not have the experience/knowledge to diagnose you. You definitely have a lot of symptoms that could be Lyme disease.

You have come to the right place for support, and help. There are so many knowledgeable people who are or have been treated for Lyme disease.
Even with late stage Lyme disease, you can be treated. Many people with late stage Lyme disease are fully recovered, or significantly better from treatment.

Ruth - for detoxing ideas - read the New to Lyme thread at the top of the page...there are lots of ideas.

And start slowly like LoveTheLight recommends.

I do the dry brushing and detox baths in epsom salts. They feel good. Also drink lots of water...and squeeze some lemon (from real lemons) juice in your water.
Those are two really easy things to start with.
Also, do your best to get plenty of rest and try to remove as much stress as possible. Be kind to yourself...it's a long road...and try to take care of yourself.

Hi Ruth,
You are definitely NOT alone!! There are quite a few of us that have had these infections for most of our lives.

Is healing possible? You bet!! You can read my 'story' here - a few members were asking me questions about my healing. Like you, I was infected at a very young age - by age 7 I had Rocky Mountain Spotted Fever, By 8 signs of chronic Bartonella, and by age 9 Lyme arthritis.
www.healingwell.com/community/default.aspx?f=30&m=2977364

If you haven't yet. please do read through our "New to Lyme? Start here!" thread that sits at the top of the forum. It's packed full of important and helpful information!

You need to have a knowledgeable doctor who can guide you through this journey. For information on finding a Lyme Literate Medical Doctor(LLMD), or Lyme Literate Naturopathic Doctor (LLND) in your area, you can start a new thread titled something like:"Looking for LLMD
/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You have come to a great place for support, information and friendship as you go through this part of your life.

Thank you, I really appreciate it! Actually, I apologize for being late getting back to everyone's awesome messages, keeping up with forums/internet accounts/ emails really is a challenge with my memory!

Leilex said...
Hi Ruth,

My heart really goes out to you! I have had Lyme around 10 yrs. It has taken away much of my life. Some of the best years. But I just started treatment. And It is ABSOLUTELY possible to heal from Lyme. You have to believe that!

I have read stories about children with Lyme and that's what your symptoms remind me of. For some reason, I think the disease presents differently in children.

As everyone said, this community is really great. Everyone is here for you. To answer questions or just support. Please find an LLMD and get some answers. And update us. You'll be on my mind.

**hug**

Ruth, dont worry about your memory and keeping up. Just add a bookmark and visit,pparticipate when you can.

just to share a 'memory' story, 3-4 years ago I joined this forum and postex 20-30 times. Latr last year I was googling lyme and found this forum, I started looking through the threads and I found one that sounded just like me but the writer was 2 years younger. I was more bedridden and using my phone so I had to move the screen to view ghe poster cause I wanted to get in touch....how stunn3d was I to se itwas me who had made the post....I had zero memory of writing any of the posts or having signed up as a member.....I mean zero recall.

traveler and I had a good chuckle ovef that.....still very scary when it happens, you just shake your head in disbelief. Btw, 10 years undiagnosed, misdiagnosed here. Just startec treatment in march.

hang in there