My Lyme Disease Story :
My name is Lisa and I have Lyme Disease and Babesiosis (diagnosed by lab work). I was Diagnosed November 2014. I started to get sick in Around August - September 2014 (when tested it was found I had antibodies so my LLMD thinks I was bit before and then got bit again and thats when I got sick)
I had a headache that wouldn't go away. I am a single front desk medical secretary in a very busy office. The headaches were every single day every single night. The fevers were almost every day, I was in my primary doctors office a couple of days a week and was put on many different medications for migraines. It got so bad that noise hurt, light hurt. it hurt to answer the busy phones at work because just hearing the voice on the other end of the phone caused so much pain,Just talking to someone hurt my ears, every little noise hurt. It was hard for me to smile at patients coming in even my co workers who I need to mention were a HUGE support for me. They listened, they gave me shoulders and advise and offered in so many different ways to help me because I was getting emotional every single day.. I hated being so miserable especially at work.
Finally I was in my primary's office and he was out of the country on vacation so I saw the Nurse Practitioner. She said "lets just throw a Lyme test on there" Those words saved my life. But in the eyes of the CDC I DO NOT have Lyme disease because I don't have enough positive bands to be considered positive. I was put on Doxy, and Prednisone ( three rounds) and I was getting worse. I never knew what "Fatigue" was until now. I was sleeping in my chair every day after work by 6:00 pm. THIS is not normal for me. I stopped doing what I love, crafting. I stopped doing a lot of things.
My headache was so bad one day in November that I called my MD office telling them I couldn't function anymore. She called me back after talking to My primary who was out of the country and said he wanted me to go to the Emergency room he thinks I may have Lyme Meningitis. I finished my day and at 3:00 pm I walked upstairs to the ER. (I work in this hospital) The ER was a circus. MY doc wanted me to have a lumbar puncture to rule out the Meningitis but yet they were back and fourth about this. One person is telling me I "probably don't have that" another person asking "WHO told you that you have Lyme disease??" I was treated like a drug seeker and attention seeker and made to feel like it was wrong for me being there, like I was crazy. They did give me IV pain meds and antibiotics and did finally do the lumbar puncture. The nurses would come in an look at me sympathetically as I was crying and tell me it would be okay. Well I worked in the ER for 15 years I KNOW what they were thinking and it wasn't sympathy, not that its their fault, Working in the ER for years makes nurses "use" to things. I was just another patient there for a "headache".
FINALLY the admitting doctor came in and said "we would like you to stay over night and see the infectious disease folks in the morning, you may need IV antibiotics for 28 days" FINALLY someone understands and is HELPING ME. So off I go to the other side of the ER where I become an observation admit. At this point my headache went from a 20 down to an 8 it still hurts but Im no longer crying in pain. The ER doc came in after an hour of me being ignored and asked how I was feeling. I said I am not crying would rather be in my own bed but they want to see me in the morning. He proceeded to tell me that its "overkill" and he could get me discharged. He left and came back in the room told me to take Motrin and Tylenol for the headache and 20 minutes later I was standing in the parking lot crying waiting for my boyfriend to pick me up. I felt abandoned and embarrassed. Was I really going crazy?
the next day I woke up in screaming screaming unbelievable pain. My headache was tripled from the lumbar puncture. The NP that I work with arranged for me to talk to an infectious disease doctor that morning and she said it sounds like Lyme Meningitis and would need to come in today (really???)
So my mother picked me up because i was in no way any condition to drive and off we went . So sitting in his office waiting for him to come in and my poor mother is looking helpless because the only thing I have been doing for a week is crying. He comes in with his resident and does a quick check asks me a bunch of questions does my Blood pressure and Temp (and I had a 102 temp that he completely ignored) he leaves to go check my blood work I had done by the NP and comes back with his resident and proceeds to tell me " you don't have Lyme disease, I want you to stop taking all your medication, Everyone gets headaches" I Was stunned. The only thing I could do is completely lose it right there in front of everyone. I said why cant anyone help me? its so bad Im in so much agony its in my face,my ears, my jaw my neck ..... and his resident says. " have you had your ears checked?" I just looked at her in complete disbelief as she looks in my perfectly fine ears. I felt belittled as he talked to me like i was 9 years old, and like I was a complete nut. He proceeded to tell me that its just a bad migraine and I completely lost it by now to the point I couldn't even talk. My poor mother demanded he do something. So he had another Lyme test ordered. And he gave me a prescription for Tylenol Codein (really? if that worked I certainly wouldn't be sitting in his office crying my eyes out ) and he told me that "He is the specialist and he would know" (if I actually had Lyme disease) He was condescending, sarcastic, and cocky and I will never recommend him to anyone nore will i ever ever step foot in his office again.
We left his office and went right to my primary doctors office AGAIN and sat in parking lot until they came back from lunch. The NP was absolutely shocked at how I was being treated in the ER and by the "specialist" . She gave me another shot in office of Torrodol which I tried to have hope it would help. It did not.
Next stop Neurology. He was very nice added some more tests onto my Lumbar spinal fluid tests.Ordered an MRI which was absolute torture with this headache. Really? who has someone have an MRI when they have this kind of headache? I stood outside afterwards crying while I waited to be picked up and cried all the way home. He Talked nicer to me and Seemed to understand. a few days later I looked up all my test results which were normal and canceled my next appointment with him. Whats the point? He is just going to tell me that everything came back normal.
November and December was pure hell. I took an FMLA from work, I thought I was dying to the point I told my boyfriend who was my rock who he needed to call when I was gone and what I wanted for a funeral etc. I told both my kids as well. I started journals for my kids so they would have something special from me after I am gone. I felt like I was dying a slow death and thought it was just a matter of time.
I read everything I could get my hands on about Lyme Disease, joined every blog and finally found a Lyme LITERATE doctor in my area and that accepted my insurance. and yes there are doctors that are actually called Lyme literate MD's . I went to see him in January and long story short HE SAVED MY LIFE.
Lab work came back positive for Babesia which is one of the nastiest co-infections of Lyme disease. Lyme disease is also a clinical diagnosis because there are no tests that are 100% I was shocked at what I read about Lyme disease and shocked at the controversy! And here I am, I am living it!
For a year I was on meds. Azithromycin 250 mg twice a day . 2 Anti-malaria drugs to treat the Babesia because its a malaria like disease. and Nystatins. I tried really hard in the begining to treat this naturally but I was just too sick and couldn't. At this point I was nauseous every day. light headed, weak, fatigued, Fevers every day sometimes they would be 99 other times it would be up to 102, All my bones hurt, my headache was still rockin, and the ringing in my head that I can only describe as that high pitched noise that comes out of the TV. I would drive my boyfriend crazy by turning off the TV all the time and saying. Do you hear that? its crazy. Now One year later I just had more blood work done because all these meds are making me sick I am waiting for those results. And if they come back that all these germs are possibly out of my body than I can stay off these meds. If it comes back that those nasty bugs are still in my blood or if i keep having symptoms than I will have to continue on.
One thing I have learned from all this is that there needs to be a change in the mentality of Lyme disease. Doctors need to have a better understanding of this disease and the CDC needs to change the criteria of positive diagnosis. If I didnt find my LLMD I believe I would have continued to get sicker and sicker and possibly would have passed away or maybe would have lost my job, and end up in a wheel chair? I don't know what would have happend to me but the outcome would have ruined my life. That I do know. I was so sick that I even wrote both of my kids a kind of diary for each of them so they would have something special from me after I pass.
Its important to have some sort of support if you are suffering from Lyme disease. I had my wonderful co workers who saw me suffering and was extremely supportive while I was working, and I had my mother and my boyfriend They were the only two people in my life that actually understood (understands) my illness. My friends don't even understand and even friends that have been in my life for 20 plus years. THIS is the reality of Lyme disease.
This is just a quick breakdown of everything I went through. There is so much more I could write so much detail I could get into (really there is... a lot of things happened in between) but I am trying to break it down to a reasonable length so as not to bore my readers.
My primary care doctor is great but he still cant understand WHY I am on so many medications and I know he is a good doctor but again, he is one that doesn't understand Lyme Disease. I cant stress enough how important it is to find a Lyme LITERATE MD if you are sick. Lyme disease mimics so many diseases and I do believe at some point in time there is going to be a HUGE realization with the medical community about this horrible disease
I am going to be posting Lyme soaps which will be Lime scented. and I am also going to be posting Lots of links and resources for anyone that is seeking information for themselves or a loved one. I will post the letters I have written to my state and all the legislative movements happening now and the Bills I support etc.
Anyone can reach out to me at any time if you need someone to talk to that has been through or going through it now.
Email me and I will be happy to contact you!
UPDATE:
I have since been "Officially" CDC positive for Lyme disease & My lab test for Babesiosis did come back positve from the start thank god.
You may get negative test results over and over because there is NO good Lyme disease testing Not that I am happy about it or feel I need to prove myself but I kinda do!
I was on Antibiotics, Anti Malaria drug, Nystatins and a bunch of natural supplements and after over a YEAR I feel human again,I had constant headaches for a year! fatigue and I am so thankful that my insurance covered all the testing and blood work and especially thankful to my LLMD for literally saving my life. I tell him that often and refer people to him on a regular basis.
Its been a long battle and one I hope I wont have to battle again. I pray every night that I wont get sick again.
Thanks for your interest and visiting my website!
07/20/2016
UPDATE:
So I was on vacation the first week of July and did a lot of gardening and pulled a big black legged tick out of my side. I then developed the bullseye rash 11 days later . I have been an emotional wreck. BACK on the Anti-malaria, Doxy, Nystatins and now anti nausea because they ALL make me SO sick. ---> BOOOOO TO LYME DISEASE!! <----
I just cant believe this. I have Lyme disease ON TOP of my Chronic Lyme. And I am so careful when I am outside.
