I'm not sure where to start as I am still processing what happened this week. I don't believe in coincedences and I believe that God has a purpose for everything. Monday, we had our appointment with Dr. Salvato. This led to an MRI done that morning. Tuesday the ER nurse calls to say that basically the sinus cavities have liquid in them making it difficult in an MRI to rule out stroke (I would like to think I could rule that out). Wednesday, Dr. Salvato's office calls and just simply says, "It is probably nothing but she wants you to see a Neurologist." I asked for a referral hoping that a referral from Dr. Salvato would be Lyme sensitive. Thursday, her office calls with the referral of which I called and was able to get an appointment for that afternoon. I have to say there was a slight hesitation but the human side dismissed it.
I dropped the girls off with some sweet friends who were so excited to have them (I love that) and Chris and I were on our way. It felt weird going to a doctor's appointment that wasn't Dr. Salvato and wasn't Lyme related so to say. It also felt weird to have an MRI that resulted in being referred somewhere. They have always come back "normal".
This guys office is also off of 59 not too far from Dr. Salvato's office which is good...wouldn't want to spread them out too far :-) Every person we came in contact with in this office was very sweet and down to earth...a.k.a. they appeared to like their jobs. As par for Dr. Salvato's office, they hadn't faxed over the MRI report as they said they would. So, Chris was back on the phone to get the report to the office before we saw the doc. What good would this appointment be if he didn't have the report? It was the whole reason we were there.
We waited and waited and found myself praying as I usually do but it was different. I found myself praying for protection, spiritually and physically and mentally. I found this odd and after praying for His protection I shifted and began praying for what I usually do...for clarity of mind for all people involved, for God's spirit to sweep this office and mind would be clear unlike any other time. I prayed for wisdom and discernment. But there was a nervousness about me. For the most part I was calm, or so I thought, but the longer I waited the more this calmness dissolved and I didn't understand why. Chris had checked to see if the MRI report had been faxed and the nurse said it had and she had put it with my chart for the doctor to see.
Chris got up and went to the restroom and wouldn't you know this is when the doctor decides to finally come in. I knew immediately that something wasn't right. He walked in, looked at me, looked down at the chart, said hello and asked how I was doing as he probably does with every patient (more routine then with any true sincerity) and I said "fine. How are you?" This caught even me by surprise as it apparrently did him as well by the look on his face when he looked up at me and then made a sound equivelent to "whatever". Then he said, "Do you know Paul?" Excuse me? Now it was my turn to be caught off guard. I replied, "Paul is my husband's father." He quickly walked over to this desk and sat down and began to spat off instructions...."I will ask you some short questions and you will answer with short responses and then when we are done I will give you chance to ask quesitons." It was said with such curtness and no gentleness as if it was my fault I caused him to breach confidentiality. He began to ask and it began to get tense. Without Chris I struggle because I don't remember things. Chris walked in the door and I exclaimed, "He is your dad's doctor." I could see this doctor tense up. He said nothing to the matter and continued on with his questions. I was quick to look to Chris for some help with remembering some things and this doctor was quick to shut Chris down. He wouldn't allow Chris to say a word or contribute what so ever. This frustrated me but near as bad as trying to answer with short answers. Not knowing what is Lyme and not Lyme it was difficult to answer the questions. I was in this doctor's office due to increase in headaches, sharp pains over the right ear and a right foot that is turned in. All this led to an MRI which put me in this man's office. I tried to explain that I didn't know what was Lyme and not Lyme and he interrupted me and cut me off saying, "You aren't in here for Lyme." He at one point looked at me and said, "Have you ever been to Connecticut?" I replied, "no" then he said that I couldn't possibly have Lyme. He also asked if Dr. Salvato is an infectious disease doctor..."no". Then he asked if I had ever seen an infectious disease doctor and I replied, "no because they refuse to see me." It was here that I began to cue in on why I was feeling uneasy. He asked me if I know of any reported cases in Texas and I replied that I had read that there is at least one reported case of Lyme for each State Park in Texas. He looked at me weird like what did I know. He asked if I could quote the source and I said, "No, I can't right off the top of my head"...I'm lucky if I can tell you what I had for breakfast right off the top of my head. He stopped there. By this time I am in tears with frustration, feeling interregated and not helped. I looked at Chris and asked, "Is this Barbara's doctor" and Chris said, "this is dad's doctor". Right then and there I had a sudden urge to get up and walk out but the other side said to see this through, don't be rediculous. We continued through the questions. He asked if he could examine me but with every thing he asked me to do I felt I was being treated as if I was faking it. Right before he examined me he asked if I knew where the head report was located. Never being one to be quick on my feet I was surprised that I said, "my head? or the report?" Finally, almost 13 years of training under Chris and I was able to think off the top of my head. He chuckled and quickly turned on his heels. He called in his nurse and told her to get Dr. Salvato's office on the phone and get a report of the MRI faxed to him. I knew he had the report in his hand, but I wasn't about to be the one to "correct" him. The nurse looked at him and told him he already had the report. Once again, I felt like I was at an appointment where the doctor had to be reminded of why I was there. He was doing a neurological work up without even knowing why I was there, not even considering the report and what was on it. He quickly sifted through his short stack and located it, took 20 seconds to read it and then toss it back on the desk.
He then sent me off to another room to have an EMG done and Chris stayed behind. All I could picture was this doctor lecturing Chris on how his wife is faking it, and doesn't have Lyme, etc. I wanted so badly to get out of there. Having had an EMG done before I was not looking forward to it. Here again, I was misled by the ladies niceness and "tricked" as she went through her part. I had even shared that I had one before and asked if she was going to do the needle in the thumb joint. She said, "oh, no I don't use needles. I use electrodes." I thought I was safe. She finished and said the doctor would be in. I asked if I could get dressed and she said no. Then she said, "do you want me to tell you what he is going to do?" Um, duh, YES!! She then explained that he would come in and do his part..with the needles.
Chris had come in through part of her part and I was looking at him to discipher what had happened with the doctor. To my surprise he was calm where I was ready to jump off the table and leave. When the lady left I looked at him and said I wanted to leave. He said he talked with the doctor about his chances of getting parkinsons and about his dad...off the record. We waited and waited and I dreaded what was to come.
He came in within 2 minutes was done. It really wasn't anything..literally...seriously it was as if he was playing "doctor". His demeanor was different. He was acting cool. He sat down and was quick to tell me that I have a damaged nerve in my right wrist and preceded to talk intelligently with me giving me the latin word for this, etc. I couldn't believe this guy. I asked what was on the MRI and he quickly picked it up and just as quickly tossed it down and said it shows I have headaches. Really? I have had headaches for years and never once have the MRI's come back showing "headaches". He went on to explain that he was concerned about all the meds I am on that I should be in the hospital under all those meds and yet in the next breath looked at me and said he wanted to put me back on Topomax and another migraine med. He said he wanted me to start wearing a splint at night to help with the damaged nerve and he wanted me back for an EEG and again for a follow up that he couldn't just prescribe these meds and "let me go". All this was spinning through my head and all I kept coming up with is inconsistencies and stuff that didn't make sense.
We walked out with the prescription slips, two appointments and a sheet instructing us to get a splint. I questioned whether we would be doing any of it. I walked out of the appointment 4 hours later with mixed feelings and questioning everything. I couldn't tell if it was a good appointment or bad, productive or not. I had a nagging feeling that I needed a copy of the MRI report.
All that night and the next morning my mind reeled back and forth, annalyzing the appointment and something did not feel right. I was trying to process what had happened, and where did it leave us and where do we go from here. I was angry that if an MRI that just says, "headaches" on it and didn't really mean much landed me in an another doctor's office. I don't care to see doctors. Its not my choice of how to spend my time. I only went because, for the first time, something on an MRI showed something that got me referred. Stuff didn't make sense and the more I thought about it the more I needed answers before I could move past it. I texted Chris and said that I needed to know the name of the doctor that his stop mom went to see that led to her verbally attacking me in my own house on Father's Day. I had a really strange notion. He came home for lunch and we talked about it. I could tell he didn't want to call her and I didn't blame him. He did and we found out that it is the doctor that told her I didn't have Lyme. So, this guy is used to talking about other people in other people's appointments. She went through the conversation with Chris and more things surfaced that just spoke "mal practice" to me. Example: In their conversation she said she didn't know that he did carpal tunnel and he replied that it was the bulk of their practice. I connect this to why I had an EMG and why I was told I have nerve damage after he barely examined me through the EMG and why I was told to wear splints and come back. Knowing that this is the same guy anger rushed through me but also relief and understanding and in hind sight I could see the warnings. Because of who this guy is, everything that happened in his office does not matter. It is nulled and we still have an MRI with no answers.
It is so obvious that he is not familiar with Lyme patients or he would know that they have had years and years of tests and would recognize when he isn't performing his full part of the EMG, especially after getting news that there is nerve damage. He contridicted himself left and right.
The entire visit with him left me feeling violated, robbed from, made out to be a fool, and stupid. I feel the only interest this man had was to make more money and support his theories that Lyme doesn't exist. He did not have my best interests or my families at heart and therefore I find him extremely dangerous.
Friday, I ran by Spring ER and obtained a copy of the MRI. Reading it with Chris over the phone we were misinformed. There are two findings on the report. One is that yes, the sinus cavities do have liquid in them. And two, that a white spec was found on the right side...the very side where I have the sharp pains.
All this has left me feeling I can't trust anyone. In saying that I feel myself turn inward and not want to have anything to do with anyone because, as humans, we all have agendas. If I don't support the agenda you have then I am going to get an tainted response, a response shadowed by what your agenda is. What is your agenda? Right now I know I have my husband and two girls, but more importantly I have my God. You see, in this world, everyone is fallible because we are human. We all have agendas, some good, some bad. However, we all view our own agendas as "good" and worth fighting for. One thing I get out of this week is I see God pulling out things and people that I tend to put my trust in or tend to look for for answers when in reality He is all I can trust and He is the only one I should look to for answers. One thought has been to get off all meds and trust in Him completely for my healing and restoration. This scares me as I know scientifically that if I get off all meds I will get worse to the point of no function at all. But He is bigger then that. But, in all the years I have prayed for healing, and even now as Chris prays for my healing every night, there is a inner knowing that it isn't His plan. I can't explain it. Its not a loss of hope. I know whether I am healed or not, He is with me. Whether I have Lyme or not does not determine my relationship with Him. It doesn't change His love for me and never will. To this I cling as all else will fail me at some point at least once.
I am still processing all this and have not come to terms or grips with it. It is not settled in my soul yet. I am still searching for what it is He wants me to get out of it, do with it, etc. Chris and I question why Dr. Salvato would refer us to a guy like this. There are a lot of questions but it has reminded me of where I need to look for them and everything else. I find my husband and girls and me clinging tighter to each other. But I also find that outside the walls of my house I want little to do with, even people, and I know this isn't of God. I will have to work through this.
At the moment, we have an appointment to see my ENT who we trust greatly. He is not Lyme literate but we met him the first time we questionable MRI back in 2000 when we were told we had cancer. We are going to him for a second opinion. He has always shot it to us straight and won't even come close to it if it is out of his expertise. Secondly, it has made us realize we are where we are suppose to be with Dr. Salvato. However, we have received the name of another natural health doctor who does take insurance but is in Conroe...and hour and half away. With our deductible met we are thinking about seeing her on other things we can do to strengthen the body in this fight against Lyme.
Oh, Friday morning I was awoken at 7:30 by a nurse in Dr. Salvato's office to tell me that the CD-57 was down to 44 (46 last time) and she wants me to start taking ATP...an immune system strengthener. Makes you think.......
Chris preaches on November 14th and I am also playing and singing. I find it interesting that I haven't played in over a year, and yet, in the time I'm told I have nerve damage, I am able to play and sing a song. I feel it is nothing less or more then the grace of God and His purpose for this song that Sunday. I have no expectations for the day after :-) Chris and I both know and believe that a lot of what we are experiencing right now is spiritual warfare. Its like being in an airplane that has no doors and is in trouble. We are hanging on tight and waiting for the landing (aka Monday, November 15th). Please pray that we are found with flying colors through this storm.
Note: I find myself blogging with a lot of emotion tonight and find it interesting that I have not once typed the doctor's name that we saw this week. I don't feel it is of my doing. I also believe this blog may be read by other Lymies and would not want, under any circumstances, to expose them to this doctor. I would not recommend him to anyone for anything. If you have a concern with who he is please feel free to email me or comment.
