Chronic Lyme Disease??

Hello. This is my first visit and post to this forum.
I am seeking some answers/advice.

When I was about 10 years old i contracted Lyme Disease. I noticed what i thought was a small blue piece of fuzz on my foot. I tried to rub it off but couldnt. I just thought it was stuck so i pulled it off and noticed its wiggling legs as i held it. i crushed it not thinking much of it. now keep in mind that this tick was definitely blue, and i am told only Red Deer ticks carry Lyme?

about a week later there was a bullseye red on my foot. a red dot at the bite mark with a red ring around it. my parents immediately took me to the ER where they did tests and said it came back positive for Lyme. I was given antibiotics and remember being told i was "OK" a few weeks later by a doctor.

I am now 34 years old (male) and for the past 5 years or so i have been suffering with chronic body pain, constantly aching legs, lower back pain, extreme fatigue, restless sleeping, memory loss, etc. It almost feels like i have a fever and flu with the body aches, where i just feel crumby. There are times when i literally have to fight to get out of bed, or sometimes cannot at all. This is severely impacting my life.. its making it almost impossible to keep a job, and makes it hugely difficult to raise my 2 young sons. its also put my marriage on the brink of divorce.

Ive gone to multiple doctors but everyone just takes blood tests and says they cant find anything wrong. I did mention to a doctor that i was diagnosed with Lyme as a kid and he said he would check for it, and came back negative. One neurologist I saw believes it may be fibromyalgia, but since there is no definitive test for that we cant be sure.

So i guess my main question here is just because Lyme disease doesnt show up in a blood test does that mean that its effects or damage cant be felt later in life? Is there a specific test that i could ask a doctor to perform??

Thank you for any help.

-Franklin

You can be bitten again and get Lyme more than once. I have a cousin that lives in CT and she has had it 3 times (none long term). Each time was from a different bite. She only got the bullseye once. I was also DX with Fibro because I tested neg for Lyme. My dr is a moron. He never cared that I've had at least 20 tick bites in the past 8 years or that my husband tested pos for Lyme. I tested neg (no western blot) so it was Fibro.

I feel for you. I had to quit working and I don't have little kids. My spouse is very understanding of my pain. I'm six weeks into a herbal protocol on my own. Don't always rely on drs to know the right answer. They don't have time to read and research OUR problems. They get paid whether they're right or wrong.

Start working at getting better and know that you don't have Fibro (I don't think anyone does, just my opinion).

i definitely dont think i was infected more than once. that was the only tick bite that ive had that im aware of.
i live in South Florida where there arent many ticks, and i havent heard of anyone contracting it from a tick here. and as i said i was tested recently and came back negative.

i contracted it from a tick in New Jersey while visiting relatives.

my suspicion is that i am somehow suffering from Lymes effects. i have many of the same symptoms and nothing else shows up.

thank you for your advice. i will add a post and try to find a LLMD doctor in South Florida.

any other advice or stories is appreciated!!

Hi Franklin-

I just wanted to tell you that the very first Lyme test I had (through Quest Labs) came back completely negative. A little while later I learned that was not a good lab for that test, and I had the Western Blot test through Igenex. It came back CDC & Igenex positive. A few months before that test, a doctor gave me antibiotics (Flagyl) for something we thought was "un-related", and I had a crazy reaction to the ABX (extremely high fever, achey, congestion, nausea, etc). I wasn't sure at the time, but I believe that was a type of herx reaction and I didn't know why. Anyways, a few months after that is when I finally got tested through Igenex. I think the ABX stimulated my Lyme to show up in the blood test, or at least the combination of that plus Igenex being a sensitive lab, I was able to get a positive test (after TONS of doctors telling me I was perfectly healthy and that I just suffered from "anxiety").

I also never had a bulls-eye rash and do not ever remember an actual tick bite. All I remember is when weird physical symptoms began...

So just because your test is negative, doesn't mean you don't have it!

That's not to mention that ticks are far from the only insect that can pass these infections on to people!! Mosquitoes are the biggest threat, as they are everywhere, can bite a person and move on to the next before anyone knows what's happening. All it takes is for the insect to draw blood to be able to pass it on to someone else.

And that says nothing about the unreliability of the testing that we currently have- that's why even the CDC says: "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful...:
www.cdc.gov/lyme/ - and believe me, the CDC is against admitting to chronic Lyme!! So if they are willing to admit this much.....

We've all been through this, which is why you have so many comments on your thread - we are hoping to help you avoid a lot of issues that you just don't have to go through.