I live in Colorado and have my whole life. I have had 3 ticks on me in my life that I know of, 1 found in my hair when I was around 10 (not attached that I know of), another in my hair in my 20's (not attached that I know of), and then about 3-5 years ago I found a dead bird on my back porch covered in what I thought was mites, I got rid of the bird, but a few days later found a tiny poppy seed sized black bug in the crease of my leg. I picked it off and saw blood on my leg and my fingers. I really thought nothing of it other than it was gross.
Then about 3-4 years ago my husband got a bulls eye rash after a trip to Mexico. I work in the medical field and thought it was an infected spider bite. He got 10 days of Amox. After one of our trips to Mexico (not sure if it was the same one) I had an episode of headache, tongue and hand numbness and extreme panic. I went to the ER thinking I was having a stroke. They diagnosed tension headache and sent me home.
After that my symptoms began. It started slowly with increasing alcohol intolerance, then extreme knee pain for a year or 2, to the point that I could not walk down stairs un-assisted. Then food intolerance (gas and bloating, pain, constipation), headaches, sensation of something stuck in throat, severe panic and anxiety, forgetting words, extreme fatigue, inability to concentrate, no desire to clean, cook, work, live, loss of libido, noise sensitivity, irritability and more recently, the inner shaking while sleeping and trembling/twitching while awake, heart palpitations and chest pain. I have also had IBS since I was 16, extreme tailbone pain since my 20’s and tinnitus since my 20’s.
I have had a brain CT, abdomen ultrasound, tons of labs all the time and an upper endoscopy. I had Kaiser insurance and my Dr. always did what I asked because I knew something was wrong but she kept telling me it was anxiety.
The upper endoscopy was at the end of September and sent me over the edge. 2 days later I was in the ER thinking I had had a heart attack and that night I woke up shaking and hallucinating. I really felt like I had been drugged. I shook uncontrollably for hours, had diarrhea, felt like I had bees in my mouth and chest and could not sleep. My thoughts were out of control and made no sense. This went on for 4 nights. I lost 10 pounds in 15 days and in the 2nd or 3rd week got the neurotoxic build up. It was like I had post-partem depression and my son is 6. I lost all connection to everything, wanted to die and nothing seemed real.
At least there was still a part of my brain that recognized this and I reached out for help. I told my friend at work and my husband and my mother. My husband was out of town, so my mother had to come stay with me to help me with my son. At this point I had already found an LLMD but had no test results yet. I emailed her and she put me on Burbur and Pinella. In 2 days I felt more normal than I had in at least a year.
So, I got the DNA Connexions test and was positive for Lyme and Babesia Duncani. So far I have taken Iteres, Hepatica, Renelix, Samento, Burbur, Pinella, Doxy 3 times a day and Cefdinir 2 times a day for 30 days, parasite cleans, alchornea and teasel root. I am also on magnesium, lavender oil pills, Vit D and C, fish oil, activated charcoal and Cholestirymin. My problem is that it is aggressive and I started to get worse, plus the provider I am seeing muscle testes, which I don’t know if I believe in. I tested for multiple medications that have cinnamon in them and I am allergic, when I told my doctor I was told I tested fine for them. I have been allergic since childhood and get hives, and my grandmother is allergic too.
So, I went for a second opinion and was told to take the Igenix test and put back on Cefdinir indefinitely. Last night I got the message that my Ignenix test is completely negative for Lyme and I need to focus on my mold exposure. I have not seen the Igenix results yet, so I know nothing about if it shows any bands. I know I have some mold exposure BUT my symptoms, history, reaction to treatment are in line with Lyme and mold. I really liked this new LLMD and feel so much better on antibiotics but am now discouraged and confused.
Can’t the Igenix be false negative too and shouldn’t an LLMD know this. I don’t know who to stay with and don’t want to back slide again. Is there anyone from Colorado that has experience with Dr. N or Dr. K? Anyone else have any advice on what to do? It would be great if I didn’t have Lyme but look at my symptoms/history. I’m frustrated that the test results are being so relied upon by the one doctor but the other seems a bit aggressive for me and I don’t trust the muscle testing. Also I am worried my husband and son may have it.
Sorry this is so long, and I am sure I left stuff out! I have come to this board many times but never really posted. Any and all advice would be great!