"Just roll with it!" That's what my husband said to me on the ride home after seeing this new doctor. He knows me all to well. He could tell my brain was in a tail spin and that I was trying to sort everything out and plan ahead and, and, and...He reminded me that I had been given a lot of information today and that I just needed to take some time and absorb it. I need to take each day as it comes, regardless of what it holds, and just roll with it. I am thankful that he is there to calm me down when I need it.
So I have to start by saying that Newhall, CA is a long ways away. I can't really complain because my two main doctors are here in San Diego and I may never need to go back to this doctor. Too many Lymies don't have doctors in their area and have to travel far away, sometimes to other states just to be seen. So I am blessed in that regard. But with the out of control LA traffic it took us just over 3 hours to get there this morning. I was 30 minutes late to my appointment but they saw me anyways. It was a stressful start to my morning.
I guess I need to back up and make sure I revisit why I had to go see this doctor. It primarily comes down to the fact that when I was denied my disability, one of their issues was the fact that my Lyme diagnosis did not come from an infectious disease doctor. I did confirm with disability that there was nothing in writing, no law or policy that stated that my diagnosis must come from an infectious disease doctor. They just said that that is typically who would diagnosis this disease. I think I stated in my last blog or two that my doctor was fairly offended by that comment. He is licensed doctor in the State of California yet his diagnosis along my LLND is being ruled as wrong. The insurance companies one doctors opinion trumps my two doctors opinion. Nice! I knew though that I would have to play the game.
I asked my doc for a recommendation to an Infectious Disease Doc and he sent me to a very nice lady in Newhall, CA. I told the doctor that I was basically seeking another opinion on my Lyme Diagnosis. She reviewed my medical history, asked lots of questions, and did a really thorough physical exam. I am not going to lie, I was scared she was going to say she disagreed. I prayed about it but I was scared. I didn't think I could handle it if she said she didn't think I had Lyme. She basically finishes up with her questions, taking notes, and reviewing everything. What she told me next was great news on one hand yet scary and overwhelming on another. She definitely believes that I have Lyme. We didn't discuss how long she thinks I've had it. I guess at this point it doesn't really matter. Then she proceeded to voice her concern over the fact that she believes I have Lyme Carditis. All that basically means is that the Lyme has attacked my heart. Once I was diagnosed, I always felt that my recent heart troubles were caused by Lyme. I think my two other docs agree but neither of them had gone so far as to name it specifically. I almost cried when she told me she believed that this was the cause of my "inappropriate sinus tach". Another big confirmation that I am not crazy. She was also a little surprised that with all of my heart issues the past few years, the cardiologists never sought the cause. They just gave it a name and threw some medication at it. Sadly, this is so common practice in the medial community today. To find a doctor to actually treat you, the whole person, and to find out why things have started going wrong and correct it is rare. Your symptoms are given a name, even if it is a disease of some sort, and you are commonly given medication to make the symptoms go away. How often is the cause of the symptoms treated and if it is, how often are you given the tools, information, and support to make the changes necessary to try and prevent it from happening again. I am beyond blessed to have now found three of those doctors.
Back to the doctors appointment. She said because of her concern over the involvement of my heart IV meds are necessary. However, if were not prepared to try and pay for long term treatment (she knows most insurance won't pay or will only pay for a month)then she said don't bother. 4 weeks was not going to cut it. My husband spoke up and asked how long she thought I would need an IV. Get ready...minimum 6 months, possibly 8 months or longer. Then back to oral meds. Holy Cats! (as my grandpa used to say) She is writing up her findings and recommendations for treatment and sending them to my doctor. Hopefully, this will be a huge hit to the disability people when the get my appeal.
I thanked to doctor a few times and left the office in tears. Good news, yet scary news. The Lyme Carditis thing is a little freaky because it can certainly cause tachycardia but it can also cause heart disease. Essentially, some Lymies have had heart attacks, sudden cardiac arrest, or other things that have led to the discovery of a heart that is very weak and failing. Upon further inspection though, they don't have any of the obvious causes of heart disease. Some require pace makers, others have required heart transplants. Again, I know God's got this worked out and I just need to roll with it but I do have to be realistic. I will admit, if I haven't before that this is one of the things I have worried about with my herxes. You can experience a worse form of symptoms you already have. If you have been blessed with a healthy heart, it is hard to explain what it feels like when out of the blue you get chest pain, can't breath, and your heart feels like it is doing back flips and it's beating at 200 beats a minute. It is one of the scariest things I have ever felt. In my mind, that can't get worse. I am going to chose to not let my mind go there though. I could totally work myself up over the what ifs of that situation.
We made it back home safe and sound, for witch I am thankful. (As a side note, on the way up, we did get see the crazy band that shut down the 101 freeway to perform a concert on the top of their van before the cops showed up. Not cool to tie up that much traffic but definitely a site)Get home and to my surprise, my medical records that I should have gotten a week or more ago showed up. I am glad that they came as quickly as they did after I was told they had no idea when they would show up. I would have loved to have had them at my appointment but things worked out anyways. The interesting thing about my medical records was that there were doctors notes that I thought were of significance that the doctors never mentioned to me. One note was from one of my cardiologists. They were looking at putting me on beta blockers for my fast heart rate. However, the note said there was some concern as to weather I really had asthma and if so they would put me on a calcium channel blocker instead. Feel free to mention that to me, and to follow up and confirm the diagnosis of asthma. I was on Advair and a rescue inhaler although I wasn't convinced it was asthma. But why didn't they follow up on that? The second note was from the neurologist. I saw him after my first crazy episode of my arm muscles being in excruciating pain for no reason and me losing all the strength in my arms and having similar episodes continue. He did a MRI of my head to make sure I didn't have MS or anything else. He told me in the office though that he was sure the MRI would be negative and it was all anxiety. His notes stated although my symptoms were consistent with anxiety, due to the number of points on my body that were sore and tender he believed I had fibromyalgia. Hello, thanks for telling me. So now I have 3 doctors that agree I have Lyme, and two that say I have fibromyalgia, yet disability says it's all crap. Okay!
One last rant before I end with some advice. The cover letter that came with my medical records from disability stated that they were responding to my Long Term Disability claim and giving me a copy of the City's LTD policy. First, I didn't apply for LTD, I applied for STD. To my knowledge, I get STD first and then it transitions into LTD. Second, I never requested a copy of the policy. Third, they didn't even put a copy of the policy in there. This is not the first time something like this has happened. Am I wrong to be concerned with the fact that the little things get screwed up and yet they are deciding my financial future? Very scary.
So to end, here is my advice. Believe I am still learning and need to remember to follow my own advice but here it goes! Please, please, please take charge of your health. I don't just mean trying to make healthy choices, but following your gut. Seek second opinions for diagnosis, treatment, procedures. Research and learn as much as you can. Educate yourself. If your doctor dismisses your feelings and concerns go someplace else. The doctors may have the education, training and experience to treat people and their ailments that you and I don't have. But they do not know your body as well as you do. They are human and they will make mistakes. Lastly, we live in a fallen world, and as sad as it is to say, money talks. Some people will put your well being aside for the love of money. Fight for what you know is right. It took me a long time to get where I am today and I know I have a long way to go. But not giving up and not giving may have just saved my life!