new here..

I am waiting on results from the Igenex lab.  I am very nervous.  I have had Lyme before. The first time 12 years ago and then it wasn’t treated well so it flared up again and we caught on to it about 4 years after that.  A few years ago I thought I had some symptoms but the test came back negative and I didn’t fight it after that. This year I noticed a great increase in the severity of the symptoms.  Also looking back at the symptoms I notice some that I have had in the past that could be explained by Lyme.   My doctor have been giving me trouble and I had to go around him and though the doctor who treated my Lyme before to even get this test. I am not seeing her officially yet but hope to once I get my results. I know I shouldn’t think about the test and what it will say but I really can’t stop.  I am very nervous that I will get a false negative again or that this really is all in my head. I would love to have someone to talk to.

Hi jen! Thanks for responding. I am not happy for you that you have to be dealing with all this but I am happy to hear from someone who understands so well.
I am not sure how much longer I have to wait for the test. The girl who took my blood said it could take up to 14 business days but might take less. That was exactly two weeks ago but they ended up needing more information before they could do anything about my test so that probably pushed it back probably close to a week. : -( I haven’t heard from them that they need any more info so I am hoping everything is a go but I am even worried about that.
I have had so much trouble with doctors also. The first time around my DR miss read the test and when the health department sent him a letter saying he had a patient with an infectious disease. He sent them back a letter saying “no she doesn’t” then he sent me to a rumotologist who looked at the test and read it as positive. She gave me a months worth of antibiotics and sent me on my way. After the treatment my dr had me retested. That came back negative. He said that I had never had it to begin with to try to cover up his mistake. I switched DRs right then. A few years later I felt I was having symptoms again and I bypassed going to my regular doc and went to this clinic down the street from me first that had a doc who was not an LLMD but had had Lyme herself and so she focused on it. she started treating my right away (I did the treatment for a year but then it got much for me and the doctor thought I was doing fine so I stopped) and sent away a test that came back as she said “very positive” she said she would send a copy of it to my Dr. It did not get sent so when I went in to him and told him I had Lyme he said “no you don’t”. Again, new doc. Now HE is giving me some trouble. I have a friend who sees him who was actually going through this not so long ago. She is the one who actually told me about Igenex. So when I asked him about the test and he figured I had been talking to her he actually yelled at me in the office and refused to give me the test at all. So frustrating.
The past few years I have shrugged off a lot of things or thought they were because of old symptoms that just never went away completely or where caused by something else. A few years ago I went through a slew of tests to try and figure out what I was having such awful headaches. Never found anything. They never went away either. Some times it’s not very intense and I barely notice it but I have had a head ache ALL THE TIME for years. Again a few years ago I started getting horrible heart burn out of the blue. Never had a problem with it before and then all of the sudden it is all of the time. If I ate anything after 6pm at all I would feel like I was dying. Another thing I had that was weird and I don’t know if it is related but it’s weird.. I had this pressure behind my eye for a few months. And sometimes I vision would go blurry. I went to an eye doc and he said maybe it was migraines but I never had the head ache. One day though I did have a terrible migraine head ach. Nausea and all, and the eye pressure. Shortly after that the whole things stopped and never happened again. Other symptoms I have include joint pain, brain fog, memory trouble, feeling bla in general, sometimes feeling week. a variety of stomach upsets, sinus pain, depression, anxiety, agitation, and I feel like I have started getting a little paranoid. One day I was sure I didn’t actually exist and I have come close to convincing myself I imagined that I was sick the first two times.. That it really is all in my head. I feel like I am losing my mind and I hate it.
Sorry to ramble. Yes it is sad to want a positive result but there is that need to know that it’s something really and more importantly something you can try and work on.

There is one here. I saw her before but now she does not take insurance and does not have a payment plan. Since it is really expensive and I was talked into believing this was all in my head I decided to wait until I had a blood test result back before trying to get in to see her. I am kicking myself for that now. But still her office has been really great. When my doctor refused to get me the test they got me the paper with the signature so I could get it and when the local lab gave me trouble I went to her office and they drew my blood for me and sent it out.

I have felt so odd wishing for a positive so its nice to hear from some people who get it. everyone in I talk to says “you don’t have Lyme, I don’t want you to.” Apparently if I take a whole lot of vitamin D everything will be fine. My friend like to explain away my symptoms too.
What is the live culture test?

Decfire,

Your story and symptoms are sooo similar to my own. I have seen pretty much every specialist there is to see at certain points. One time, I thought about how for someone my age, so young, to have so many problems, I must just be very "unlucky." I started to accept that that was my "lot in life." I, too, went to the doctor for severe, sudden headaches, and even the ER where they originally thought I was having a clot one time and meningitis another time. I've had every test in the book, including a spinal tap. Only to be declared "You're fine!"

I started having severe abdominal pain and fevers. I was told my abdominal lymph nodes were swollen and it would be better in three days, and it never did get better. Since I started the herbal treatment, my fevers have gone away, but the abdominal pain never did. It still shows up from time to time...the thing about your story that got me is...two weeks before the severe abdominal pain hit, I got heartburn for the first time in my life. And not just once, it hit me, so severely and every day around 3:00 in the afternoon, that I had to get up and take a break at work everyday. I even started borrowing a co-workers prilosec, until I realized it wasn't going away and went and go my own.

I shrugged off symptoms for SO long. Then, a couple of months after the abdominal pain started, I got similar worsening neurological symptoms as well, including blurry vision in my right eye and depression. The past couple of months, I have had increasing paranoia.

I'm writing all of this, because I know when I first found out about lyme disease and suspected I had it, hearing stories from other people helped me to ease up on myself. To regain my self-confidence a little after I was treated so horribly by so many doctors. And to feel like I wasn't alone. I hope it helps!
Now ...if I could just get that positive test!!