Hi – Please feel free to post your feeling & troubles associated with Lyme Disease & it’s co-infections. We are here to help, whether it be helping you get answers or listening to what you are going through.
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Filed under: Lyme Disease Info & Help Tagged: | Chronic Lyme Disease, Lyme Co-Infections, Lyme Disease Info & Help
Hi – My name is April Dawn,
I have had Lyme disease for many years, although it was diagnosed only a few years ago. I am so angry, enraged is more like it, over-whelmed, hopeless feeling, over all of the politics, lack of information, denial I am forced to deal with in trying to get treatment, heal and have a life worth living. I have a specialist Lyme doctor who I trust – however – she is doing her best to stay under the radar and I respect this but it is very stressful to try to support this – as I am on medicare, I am required to have a primary care provider (doctor), and I can’t find one that isn’t brainwashed about Lyme and pain medications, Fibromyalgia etc. I find myself never knowing how much to tell her, or when to lie in order to protect my doctor and advocate for myself – it is a confusing mess – and I shouldn’t have to be stressing out about this (which of course makes all of my symptoms worse). When I see my PCP tomorrow – she will ask me – as she did 2 weeks ago – if my “chronic infections” are being helps by the antibioitics (well, doctor, I don’t know as it will take several months, maybe longer until I know!!!) She told me that narcotics only help 30% of pain (after I told her that before I was on them I was completely bed-ridden for months and was ready to die. Now I at least have limited movements and can go to doctor appointments, physical therapy etc. I just feel like I truly can’t handle this much longer – all of these battles that aren’t even directly about my healing.
Thanks for listening,
April Dawn
P.S If I was physically able – I could go on and on about these types of battles I have had to fight, still do have to fight, that have nothing to do with my battle of getting up every day – despite all of the horrible symptoms – despite having lost almost everything in my life that brings it meaning or joy. And I am one of the lucky ones – I am diagnosed – I have a specialist (although I can’t afford to see her even close to enough to help me except in the most basic of ways – medications/tests). And I am so scared about the future of health care and what that will mean for me.
oh – and we haven’t even began on the co-infections – which my specialist is almost positive I have due to what symptoms she see and how they change etc. and with every single day there are more battles with insurance that have caused my treatment to be put on hold for months at a time – from paying for medications to paying for lab tests – special ones not covered by insurance.
I don’t know of any support groups here in this small town, and I can’t stay on the computer for too long as it will cause me a great deal of pain.
I appreciate this chance to share some of my struggles.
April
Hello,
My mum was bitten 5 years ago by some kind oof big moisquito. She had a big red mark on her shoulder 6 months after she was biten. After visitting doctors they sent her home with cream without even testing for lyme. Few years llater after being without symtoms she started to have arthritid symptoms, Swellings in joints, loosing weight, 12kg without logical reason. She has visited few herbalists and every single one of them told her that she has lyme not arthritis. She went to see doctors and asked them for a blood tests. They came out positive for one and on border for another. So nobody would treat lyme. After getting worse and after few more blood tests with the same result her joints in whole body are effected. Cant walk, use hands propperly, everyday jobs are just impossible to do..Pain on every day basis. Her blood results are very bad at the moment. Iron 1,5 inflamatory factors very high..Doctors are treating her for arthritis only,but its not successfull. one week ago we got blood results from specialist frm hungary for lyme and they were very suprised that nobody here in Slovakia would treat her Lyme. They gave us Doxyciclin antibiotics. Here in Slovakia doctors are prescribing Metatraxat, Biological treatment, Prednyson or others for arthritis. If there is anobody who can give us any helpfull information about how to treat chronic Lyme it would be great. We have tryied olive leaf extract, oregano, many others and dietary changes but nothing works.
Hi Katarina – I spoke to the doctor who helped me so much in regards to your situation. He said to go to his site http://www.personalconsult.com and request a free 5 minute chat. He’ll call you and that should help.