Testing Negative... Still having problems... HELP!

So I have been putting off coming to this chat because honestly.. I DONT WANT TO HAVE LYMES. But at this point I need to put fear aside and get educated and I figured this was the best place to go.

In december I got very sick. I had a few swollen lymph nodes, I was so weak that I could barely walk to the bathroom, and i had wide spread body pain. after WEEKS of ER visits they tested me for Mono and it came back positive. I thought that was weird because I didn't have a sore throat or fever but they said not everyone gets the classic symptoms. I guess they caught the mono towards the end because 3 weeks later I tested negative.

Even though I no longer had mono I was still weak and achey. Eventually it got worse. I was having brain fog where i couldn't concentrate and I would mess my words up I was trying to say, I was having horrible dizzy spells, my vision was very blurry, I was having headaches, and I was having faint tremors in my hands. They admitted me into the hospital and began running ALL the tests. They did CatScans, MRIs, ALL blood work you could imagine, even a spinal tap. NOTHING came back. I requested a Lymes test and that too came back negative. I was told based off of all the test being negative and my symptoms I had Fibromyalgia. I even went to Mayo Clinic for a second opinion. They retested all my blood work including Lymes and it was negative as well.

for about 3 months I got better. I wouldn't say all the symptoms went away but I could tolerate them better.

THEN

All the sudden one day I woke up with my mouth/tongue burning and tingling. that was 4 weeks ago. My mouth/tongue still burns and tingles daily and I get some burning sensations in my skin.
They ran all blood work again and another MRI.. Still nothing. They were suppose to run ANOTHER Lymes test but the lab didn't do it like they were supposed to.

I just don't know what to do. NOTHING comes back. They are putting me on lyrica because they still think this is all fibro and nerve related.

Here is what I am concerned about.. WHAT IF IT IS LYMES?? I have been tested 2 times with negative results. But what if it is lymes and I am getting to the late stages? Will Lymes kill you if your not treated? Ugh! Its just so hard to not know whats going on. To know something is wrong but you don't know what. I am going to a Dr. in a few months that has dealt with some Lymes patients to have a 3rd opinion but in the mean time I am worried if it is lymes can it kill me while the tests are saying no (I know thats drastic but I don't know much about Lymes and after over 8 months of this I am really stressed and worried.) any advice would be appreciated.

THANK YOU!

how much does that test cost?

The IgM and IgG Western blot cost me $269 in June.

Unfortunately, Lyme isn't inexpensive to diagnose or treat. But if you have it, you HAVE to treat it.

Some members here have had good results with herbal protocols, others with antibiotics. You can try the herbals on your own. I feel more comfortable having a Lyme doc directing my care.

Mandi Jayne welcome!

A little over a year ago I was in your situation after many visits to the ER and many doctors visits with all negative results. I finally accepted my reality I had Lyme disease and I needed to get help and treatment ASAP.

My lyme tests were all negative also the IGeneX test was negative, I was so lucky to find this support forum and found a doctor who is helping me to get better.

Okay so here is my ? If everything is negative, and they decide not to treat me... Is that like a death sentence or does that mean i will just always deal with the problems?

I don't know much about Lymes but there are some scary articles out there that make you feel like if you don't get on antibiotics you die. Other make it sound like its a horrible disease and you will have to deal with horrible symptoms but you won't die.

My doctors don't believe i have lymes. I am going to see another doctor. The thing is you never KNOW if you have it or not if the tests are negative bc Fibro has similar symptoms so what do you do just say Oh well put me on antibiotics?

Mandi Jayne, I tested negative even at Igenex. My LLMD at the time, many years ago said that's not uncommon. Testing is Not always 100% accurate. Lyme is a sneaky little booger that can hide deep in tissues and organs sometimes. How do I know I have Lyme and at least one co-infection? I pulled ticks off before I got sick and had a classic bulls eye rash and every symptom under the rainbow for Lyme and Bart but not all people have that either.