I am new here , I will be probably posting randomly in spurts when I am feeling up to it . I came on the other night googling my symptoms( once again ) because I have been feeling really bad lately and my mind just doesn't feel up to handling the symptoms . I have a very hard time focusing or sitting still when my symptoms are acting up . I have found so much comfort in reading on this forum , its very grounding because I am at home with what you all are going through . I wish this on no one and I am so sorry that anyone has to go through it , but it is easier to deal with when you know someone else gets what you are trying to describe , these symptoms can be downright boggling ( to myself and anyone around me ) .
Right now its just achey everywhere , a ton of constant adrenaline rushes , chest tightness, feeling like I'm going to black out , extreme fatigue ,abdomen feels "toxic " and "grindy hot " alot of anxiety and racing thoughts .. hot flashes , severe air hunger .. so bad I feel like yawning or sighing with my mouth open much of the time , embarrassing to go in public , and the friends and family always asking whats wrong with you why are you breathing like that , Insomnia for weeks now . Of course anyone you mention not sleeping well to .. they automatically think that all the aforementioned symptoms must be because you aren't sleeping. But you know how you know your body and the not sleeping feels one of the symptoms of something bigger . I fall asleep and get awoken by "zaps" and surges, and panic attacks , the shakes , heart pounding out of my chest . I feel "wired but tired " , and I lay awake with a body that feels like death but a mind that wont shut down . Its just torture .
Now I have a long history of many other symptoms , these are just the most prominent recently ( and have had the same ones periodically ). Complete with heart symptoms that sent me to the ER many times , chronic pain & fatigue ( diagnosed with chronic fatg & fibromy. ) , I've had so many heart workups that only shows PVC's , god how canyou have such intense heart discomfort and be "fine" ?? Then to top it off my symptoms came ot a head this past fall ... I got so sick that my neuro symptoms turned into severe weakness where I couldn't grasp anything without dropping it , footdrop ( tripping over my foot ) legs that felt they were coated in cement , internal shakes so bad and a head nod .. then my arms and torso were extremely weak and loss of coordination , I could barely do anything , I had to call on my ex to come stay with me to help out with the kids and my home based business. I was petrified ,and so weak . I went to the doctors every week , had many tests performed , and had brain MRI's , Spine MRI's ( and neck ) . They could not find the problem . Everything kept coming back NORMAL :-/ You know you are really sick when you are HOPING they will give you a diagnosis of Multiple Sclerosis , bc you feel so terrible and no one around you can see what you feel , and you just want a name for your malfunction and pain .
I took nearly 6 months to even start feeling "normal" ( well back to my normal ) and get my strength back a bit . It seemed to flare or cycle every so many weeks as I was healing from that whole ordeal . I am still dealing with flares of those symptoms .
I have good days and bad days , but I barely remember what a real .. good day use to feel like .
So I come here and sign up so that I can get and give support and share info and symptoms etc.. and mostly I am hoping that someone here can direct me to the name of a decent Lyme Doctor in my state .. Maine . I am convinced that this laundry list of symptoms and pain and fatigue and all sorts of malfunctions is not all in my head ( although I do know stress can make my symptoms worse , and relaxation can help a bit when times are getting unbearable , I have to remind myself to use techniques I know ) . I have a health history starting out when I was 10 ( which is when I started having constant anxiety seemingly out of the blue , so bad that I would turn purple and was in the ER repeatedly with a very worried mother ) . I'd love to share my history or timeline of symptoms here , but not sure how to post it ( it is rather long ) , but I wonder if other people with lyme can relate .
I did go to a homeopathic doctor in CT, that my uncle who has lyme went to , he was very expensive though and would only use homeopathics , also he is 7 hours away from me and the ride just about killed me because of my anxiety issues . So its not an option . He did electromagnetic feedback testing on me and he signified a list of pathogens etc that he found in my system . Lyme being one of them also I think it was Babesia ? I am going to email his staff and see if they can email me my records because I tried back a while ago and at the time my inbox was at 100% and their email got bounced back to them . I dont know why I never felt connectd with that doc , there was some things that didn't set well with me with things he said and did concerning the treatment and it made me feel doubtful of the efficiency of his regimen . Being so far away and so expensive I leaned away from going to him . I really need advice on who is good in my state or even NH or Mass , closer the better , but if they are good than I will travel .