I put together what was, for me, a huge puzzle of unfortunate medical events that caused my symptoms. I had a partial hysterectomy on top of an underlying long untreated thyroid problem. This caused my body to completely crash, having no hormones in my body whatsoever. It took several months for my body to become devoid of these hormones, which made the connection hard to recognize. Compound that with the fact that your hormones are not supposed to deplete with a partial hysterectomy, and that I had a reaction to Doxycycline, and an even more severe reaction to Doxycycline when the LLMD doubled my dose, and my symptoms were hard to blame on any one thing. Do you think the following symptoms sound like Lyme Disease? Exhaustion, peripheral neuropathy (buzzing in the hands/feet), internal vibration, headaches, flush of sudden heat, flu-like aches? Well, I did. They actually were my first symptoms. But they are also symptoms of untreated Hashimoto’s Disease (which is what I am now diagnosed with), or severe hypothyroidism (for those that have thyroid problems without the autoimmune portion), or surgical menopause or hormonal imbalance (which I am also dealing with). Do the following sound like neuro Lyme Disease? Intracranial pressure, pain in the base of the neck, severe headache. I thought it did. But these were my next symptoms and were actually due to a reaction to Doxycycline. Feel free to look up side effects of Doxycycline. Instead of taking me off of Doxy, my dose was doubled. I was told that I was herxing. The worse I felt, the better. Those spirochetes were dying off. Would you diagnose Lyme clinically with the following symptoms? Slight vertigo, blurry vision, sudden increase in eye floaters, foggy brain, word recall problems, joint and muscle pain throughout the body. I was clinically diagnosed. Turns out that every one of these could be explained by the combination of untreated Hashimoto’s Disease and surgical menopause. Once I stopped the Doxycycline, and was put on Synthroid for my thyroid, I became better instantaneously. I went back for a follow up with the LLMD and he acted like he didn’t understand why I was so much better. But by then my labs were back with one positive IgM band and low CD57. He didn’t even question that I had Lyme. Only now, he is upgrading me to Chronic Lyme because of the low CD57. He told me I had been infected for years, and this must go back a long time to have a low CD57. Even the book that he gave me to read threw out the CD57, but he said he still believed in the test and didn't care what the book said. Do you believe that the CD57 is to be used for a diagnosis? On what basis? He only gave my husband a CD57 test. Why didn’t he test him with a Lyme antibody test? I would love to hear any ideas you may have in support of this doctor using this as a proper diagnostic tool. Do you stand by the idea that my negative ELISA test, followed by ten negative bands of IgGs, with only one band of IgM positive is enough to put someone on intravenous antibiotics from Chronic Lyme, especially in light of a recently positively diagnosed Hashimoto's Disease antibody test?
It is true that I immediately went to a Lyme doctor, thinking that was the correct path, and I avoided mainstream doctors. Lyme was on my brain because of my recent travels and because a friend of mine had been talking about Lyme disease while I was on vacation. I am a rare soul that actually heard about all of this before my symptoms hit and I thought I was catching something early. I thought that contacting a local Lyme support group was the correct way to go about things. I went online for support from Lyme chat groups, and found unending information from Lyme patients that insisted that I stay away from ID doctors and the CDC, which I did for a long time. I did eventually start going to several doctors, and each portion of the puzzle was difficult to establish, but eventually I put it all together by doing research in each of these areas and seeing specialists. Doctors tend to be specialists in their particular area, so it is important to find a doctor that will eventually help you to look at the whole picture. But I believe that I stand as living proof that these LLMD doctors are either misguided or intentionally misleading patients. Do you think that a patient that has been dealing with symptoms for years might feel a sense of security in simply having a diagnosis and feel comfort in the fact that they have a doctor that is certain that they have a reason for their illness and a treatment for it? I know I would. But I also see what happened to me, and how easy it was for me to truly be convinced that my symptoms were definitely Lyme. But they weren’t. It isn’t always Lyme. Even if it feels so certain that it is. Even if it feels better to believe that it is and that you are doing something about it. For me, it caused me delayed thyroid treatment when I really needed it. I believe that adding strong antibiotics and not adding thyroid meds caused symptoms to persist and increase to a dangerous level. I can't imagine what these antibiotics would have done to me long-term. That is why I am here. Because I came here months ago looking for answers, and I hope that I may provide my experience for others out there searching.