New member...possible Lyme?

Hello Everyone,

I am new to your community, here is my story......

Two months ago I had a CT scan with iv contrast performed on my abdomen and pelvic area during a trip to the ED to check for the cause of left flank pain. While nothing was found, I became quite ill in the days after receiving the contrast, and have since gone on to develop chronic symptoms. These symptoms include: skin changes (thinning, red mottled look); veins showing throughout my body; spider veins on my wrists, legs, and feet; feet burning and pooling with blood unless elevated; heart races when standing or attempting exercise; low blood pressure; poor circulation in hands and feet with extreme reactions to cold and heat.

I finally got health insurance six weeks ago, and the first doctor I had been seeing since the advent of these symptoms kept telling me I have anxiety. Mind you, this doctor never even physically examined me. Just brushed me off and kept saying that I am a healthy 30-year-old female. While my basic blood work did come back normal, the symptoms I am experiencing, and the subsequent changes in my body are all too real. Why would I waste my time and keep coming back for nothing! I would much rather be living my life.

I became extremely frustrated, losing control of my body and my well being. My boyfriend then decided to take me to a local walk-in clinic one night after I got out of school. I was skeptical, figuring that once again I would be told I have anxiety. Well, the doctor that I saw that night was different. He listened. He took notes. He physically examined me. He told me that my glands were swollen. He then asked me some questions that threw me for a loop: "Did you play in the woods at all as a child?" "Did you ever go to camp?" While I was uncertain of where he was going with this I did reply "yes" to both questions, as I did spend plenty of time playing in the woods living in New England. Then he asked if I have ever been tested for Lyme disease.

The thing is, I have been getting sick for years, but managing it, as I have never received a diagnoses. I have always figured I am just faulty in some way. I have periods when I feel fine, and then sometimes I get sick once to twice a week. Sometimes it lasts only a day, sometimes three days. There are some periods when I experience new things I never felt before, and then I return to the "normal" symptoms. I usually know when I am about to get sick, because I get this almost crazy feeling in my head, I can't explain it. My left eye starts to droop. When I am in the middle of an episode, all I can do is lay down and cover my eyes. It almost feels like something is literally crawling on my brain. Afterwards, as I come down from the episode, I feel like I am sore all over my body. However, I never connected those feelings, which I have lived with for over ten years, with these new symptoms, which are affecting me on a daily basis and changing the look of my body.

The doctor told me that my symptoms are consistent with Lyme, but that he doesn't want to rule out that I am having some type of systemic response to the iv contrast. I asked him, "If I do have something like Lyme, might the iv contrast have stirred something up?" He said that is a distinct possibility, but that he does not want to rule anything out. So he gave me a seven day trial of antibiotics, along with a symptom checker sheet while I wait for my Lyme test, and I am going back tomorrow to see what is next for me.

While I have experienced many of the symptoms on this list, I am confused by all of this. Is it possible to have Lyme for so long without becoming seriously disabled from it? I mean, all of these new symptoms started after I received the iv contrast dye, so I am uncertain whether they could be connected to Lyme. Does anyone hear know of Lyme patients having problems with such procedures?

The antibiotics are making my tummy hurt, and my leg muscles keep twitching. In addition, I felt a bit crazy when I first took them. I think I am just really scared because I have no idea what is happening to my body. I am just glad I finally found a doctor who actually cares and believes me.

Thank you for reading my story, and for any knowledge you can pass on.

Yes, all the symptoms are crazy wierd and you could have been suffering from the stress of Lyme for a very long time. More than likely it’s because not many people know or understand what Lyme disease is or what it’s about. I am so happy for you to have a doctor that you can go to now. One that will listen and take your experience into consideration. Suggestion, if you don’t have a diary, get one just for your Lyme experiences. Sometimes so much happens, you’ll forget some of the most important details. At my worst, I would note my issues several times in one day. The rhythm of your symptoms may identify to the doctor the degree of your illness. Hang in there and stay strong. Blessings.

Hi, so sorry you’re going through all of this. I have had similar things happening. Well, I’ve been “sick” for years, fatigue, brain fog, rectal bleeding, joint pan , abdominal pain, spider veins, very bad circulation etc…I’m 27 yrs old. After a couple of months after finding a “bite” on my leg, 3 blood tests, biopsy, twice in the ER…I finally have some answers. I got diagnosed with Lyme and Vasculitis within a month of each other. I’m not sure if all the things I’ve been going through for years is related to this at all. The Lyme disease actually caused Vasculitis to occur. Lyme bacteria can actually cause many other diseases as well. You should probably get checked for vasculitis bc it’s an inflammation of your blood vessels, and you have the symptoms of bad circulation. Get it checked before it gets too late, bc now I can barely walk…both of my ankles are so swollen it feels like I’m dragging elephant feet. There’s 11 different kinds of Vasculitis, they are very different from each other. Vasculitis can show up on blood tests (not always 100% accurate) or a biopsy. I hope you find some relief and answers!! Good luck, keep us updated! =)

Forgot to mention…get Western blot checked, that’s one of the definitive tests for Lyme.

I also got diagnosed with Raynauds this past month, also has to do with circulation.