Help ! long story but i need to explain everything im desperate. lyme?

I was hoping someone could help me. I have been chronically ill for the past 2 years now. It started in 2012 where i had chosen an awful room mate. this person was filthy and had brought in a dog with fleas and ticks. well after making him get rid of the dog i had to get rid of the flea problem by myself. anyways i cant remember when but i saw a huge tick on the floor didnt know what it was until i stomped on it and blood came out all over the place. it was just one tick i saw and stomped on. it was big and grayish blue with a tiny head and legs. i remember having several flea bites on me and if i had a rash i would have probably thought it was some kind of bite.

one month after getting rid of the fleas i was still unable to leave that apartment and i remember feeling ill and thinking that place was making me sick. one thing i clearly remember is telling my mom i thought fleas were still there because i was itching ALL OVER. well there was no known cause for my itching no more bites and no fleas to be found but i continued to itch for several weeks.

Following the itching i abandoned the apartment to move in with my mom because my room mate stopped paying share on the rent and i couldnt afford it alone. I felt okay for a couple months until i started experiencing severe upper back pain and pain in my shoulders. i quickly noticed knots forming all over my neck and back. i saw several specialists and every one said because i was a swimmer i just strained my back. Well months went by i was still in agony and i started having numbing and tingling in my hands and shooting pain down my arms. finally after about 10 months the pain moved into my low back and hips. I continued to see doctors still no answers i was diagnosed with fibro and carpal tunnel and a labral tear in my shoulder which i repaired . following my shoulder surgery 10 months after onset of back pain i had developed frozen shoulder and severe tendonitis.

now 7 more months has passed and since the pain in my hips i have joint pain in all my joints . my elbows are mildly swollen and i found the carpal tunnel is due to the swelling in my elbow from a tendon i believe. i have tendon swelling in my wrists and they pop alot. i have constant muscle twitching in my legs, jaw pain, headaches, stuffy ears, hoarse voice, shortness of breath and i am in constant agony. i also developed a petichea rash on my abdomen. i have mild swelling in all joints and i dont know if its tendon swelling or joint swelling.

I recently saw a rheumatologist and had a positive ana of 1:16 anti nucleor antibody with a positive antigen that can cause spondylitis in the spine and a high wbc count. it explains my back pain but not my other symptoms.. my rheumatologist wasnt sure what to diagnose me with other than probable spondylitis and put me on prednisone 10 mg per day. i was told the muscle twitching was benign fascilation syndrome but i think somehow my nerves are inflamed and irritated.

i keep thinking back to the tick in the apartment since it was so close to around the time i was sick. 1 month ago i took a western blot test it was negative. i hear the test is unreliable. i dont know what else to do doctors tell me its not lyme but i have been to so many specialists and there is no answer for me. can lyme cause a positive ana ? Also how can i find a lyme specialist who can answer all my questions?

im at the point where i have not only lost my health, my bank account, my marriage is on the edge i feel my life has no worth. the pain is so bad i can barely climb stairs now. :(

pls help me.

I'm so sorry for the hard times you've been through. I'd suggest you start a new thread and ask for help finding a LLMD (Lyme literate doctor) in your area. More people will see your request that way and hopefully have a doctor suggestion for you. Please enable your email in your profile so people can send you names of doctors since we can't post them on the forum. Also, read through the "New to Lyme?" thread at the top of the page, where you can learn a lot about Lyme.

I'm glad you found your way here and I hope it will lead to you getting some answers. There are many caring and helpful people on here, so ask questions whenever you need to. Keep us posted.

the igenex lab does a lot of testing www.igenex.com ! you should get tested for co-infections as well, a lot of people with babesia complain of things like shortness of breath and hoarse voice.
I hope that whatever it is you have, you figure it out soon, and you get treatment that works well for you with it. You can try non invasive things to help your symptoms like the swelling until then, maybe just to take the edge off. Doing epsom salt foot baths is pretty mellow and can help pull out toxins in case there is a bacterial problem (but also, we just get a lot of toxins in general throughout day to day life). When I started having arthritic symptoms and swelling my mom told me about juniper berry soaks, and they're pretty helpful, if only temporary. You just boil juniper berries in water (you can usually find them in natural/health food stores) and make like a tea with them, kind of. The water will go a light brown colour. Then soak some rags in it and wait for it too cool off a bit (you don't want boiling hot temperatures on you!). Then when they're still nice and warm but not too hot, wrap the rags gently around the effected areas, like your joints, and let it sit for 10-20 minutes. It can sometimes help bring down the inflammation in the area, I used to have to do it all the time when I was having pain difficulties that started impeding my ability to walk on a regular basis!

Hi fn,

welcome to the site. I took a lyme test at lapcorp just recently. it came out negative. I, like you, was feeling like my life was slipping away. I was at the end. (I thought anyways) then I took the igenex test which is much more sensitive. I received a positive. I am only a few weeks into treatment and I can honestly tell you that I am starting to feel alive again. it is a rough journey, but i'll take it!

I share my story to let you know that there is hope. google "ILADS" and send them a message for a Dr. referral. they will email you back. this is what I did.

hang in there. you sound like a lymie, but we are not doctors and can only give you suggestions. start detoxing though. baths/foot baths and take it from there. keep in touch!

Fnfiacco, the flea and tick part of your post is a red herring. It doesn't really matter how you might have been infected, and it probably wasn't from the exploding blood of an engorged tick that fell off a dog! Nonetheless, you seem to be very sick, and your symptoms certainly sound like they could be attributed to Lyme.
ELISA and Western Blot testing are woefully inadequate and unreliable. Your best bet is, indeed, a clinical diagnosis from a LLMD. I hope you will be able to keep your appointment.

Like you I was active, healthy, athletic and always on the go, until my world crashed 2 1/2 years ago. I thought I had Lyme, but tested negative. Everything hurt - my bones, my joints, my muscles, my tendons. I saw 3 internists, an endocrinologist, an orthopedist, an allergist, a rheumatologist, 2 neurologists, a gastroenterologist and a podiatrist. My legs ached, my Achilles' tendons hurt so bad I could not walk down the stairs without coming down sideways clinging to the bannister. I had heartburn and swallowing difficulties, my hair fell out, I had heart flutters, I couldn't regulate my temperature, my breath stunk, and my (legs, arms, face) muscles twitched incessantly. I had Hashimoto's thyroiditis, high cholesterol, high blood sugar, high blood pressure and metabolic syndrome. I 'puffed up' - my upper abdomen was always distended and I gained 40 lbs.
I had an MRI, X-rays of everything, ultra sounds, physical therapy and I slept in orthopedic boots.
When my PCP decided that my only remaining option was a psychiatrist, I begged to be sent to a LLMD. I had done my homework, and was aware of false negative serology tests. A week later I was in an LLMD's office and, with a clinical only diagnosis supported only by a hit on band 41. I began treatment in October of last year (abx) and ALL of my symptoms have resolved, except some occasional muscle spasms in my calves. I feel like a million bucks, and I feel like I owe my life to my LLMD!
I wish you healing and health. It is a long, hard road, and the frustrations are enormous. Hang in there. There's light at the end of the tunnel.
And don't take the prednisone or any other steroids. They suppress the immune system and allow the causative bacteria (Lyme) to thrive!