I hope you find the correct path based on the correct diagnosis, whether that be fibro or lyme, and I wish you the very best luck. I know just how maddening and confusing it can be, to be assured in the correct diagnosis and the correct treatment.I can only share my personal experience and story with my diagnosis, and what has helped me in finding the truth. I do believe that aggressively/ extensively testing for Lyme, however tiresome and confusing, may ultimately prove life-changing and beneficial to your full recovery. Galaxy Diagnostics is currently, in my experience, the most sensitive and sophisticated lab for these kinds of tests. Note: I do NOT have Lyme disease myself, but my story may be useful to you.
In 2016, when I was first bitten by my cat, who died a few days later, I never thought much of it, I grieved my kitty. I had no mark, no rash, nothing. I went to an Infectious Disease specialist at the time of the cat bite because Dior (my cat) was very sick. He told me I looked healthy, so no need for prophylactics. A week later, my cat died from her illness.
3 months later, I was dying with two severe infections - one was Scrub Typhus, the other was Bartonella or more commonly known as Cat Scratch Disease. I was put in the ICU on account of my oxygen level being down to 40, and because of the history of cat bite and death, tested for Rickettsial infections which is what the cat died of. I was positive for Scrub Typhus and treated, and survived. I had been completely healthy prior to this illness. I was put on 14 days of antibiotics for Scrub Typhus, but after treatment stopped, I continued to suffer body aches, muscle pains, strange symptoms. 5 days after ending treatment, I was in such agony I went back to the same Infectious Disease doctor.
He dismissed all my symptoms as "aches and pains", tested my vitamin D levels, and diagnosed me then and there with Fibromyalgia. He insisted I had all the tender points. He insisted fibromyalgia was all I had, and refused to even consider the possibility of anything else. I asked if it could be any other infectious disease, and he told me no, and even if there were, I had already been treated with antibiotics (Doxycycline, for 14 days.) I got myself tested for many, many other diseases - auto-immune test, deficiencies, intestine problems. My symptoms were everywhere - sometimes my gut, sometimes my muscles, sometimes fatigue, often insomnia, sometimes fever, sometimes bone-crushing tiredness and headaches. I finally thought - maybe it's true - I do have fibromyalgia. Everywhere I read on the net it seemed like fibromyalgia. It was a very confusing, bleak time in my life.
I wrote to a Scrub Typhus specialist in Thailand whom I thought could help me because I still believed I was suffering from Scrub Typhus. He quickly assured me that 14 days of Doxycycline was enough treatment, and that it wasn't Typhus. BUT --- he saved my life by telling me - hasn't your doctor considered Bartonella? Considering your cat was sick and died - it could easily have transmitted Cat Scratch Disease to you. I got tested for Bartonella in India, and it came back negative. I would go through periods of denial, thinking I was fine but only imagining it, or go through feeling sure I had fibro, I mostly wanted the endless speculation to end and just get on with my life with some sort of treatment that worked.
My mother insisted that I likely had Bartonella. I got mad at her. I was trying to tell myself if I just went on living, slowly I would return to normal like I was months ago. But she was adamant. I suffered agonisingly for 6 months. Finally, I travelled to the US to get tested for Bartonella at one of the best labs for it at Galaxy Diagnostics. The doctor there - an expert in Bartonella - INSISTED I would need Bart treatment regardless of whether it came back positive or not. I thought he was a freak to say that. I still thought it was wildly unlikely I had Bart. I thought he was being fanatical about
his insistence I had Bartonella based on my symptoms.
It came back positive. Even my blood serum, showed the antibodies. Beyond any question of a doubt, I had Bartonella. I've had around a year of treatment and am finally better and not dysfunctional the way I was then. I have some months left of treatment till I am permanently cured. I was tested extensively and only have Bartonella, no lyme or other co-infection. Tick borne illnesses take time and patience to get rid of, but they can go. And they can really mimic a HOST of plausible seeming diseases. And not everyone knows enough about
My biggest regret is that I delayed my Bart treatment until I tested positive, because I really didn't believe I had it. I don't want to convince you of something you may not have. I can only share my journey, and how I was gaslighted and often felt crazy until I tested positive for Bartonella.
Post Edited (Dollface29) : 4/15/2018 7:04:27 AM (GMT-6)