Two posts in two days! Are you surprised? :) I had some time this afternoon, and I thought I would update you on my appointment with my doctor's PA. I just have to say how thankful I am for her wisdom, compassion and how proactive she is. I don't know where I would be without that office.
In general, we are still dealing with a severe infection of Bartonella. There are a few antibiotics that hit Bartonella. So, it's pretty obvious when you are off of them and your symptoms flare that you are still dealing with this infection. Boy, is it stubborn! As a side note, anyone who does research about Bartonella will see that the normal treatment is only a month or two of antibiotics (sometimes IV); however, that is for people who get it and treat it right away. I got it in 2003, but since no one could figure out what was wrong with me, it went undiagnosed until 2009. That is a long time to have an infection blazing through your body reaping havoc.
The PA said we should try to increase Rifampin. There is an optimal dose, but we have to get there gradually because this drug tends to hit me pretty hard. So, it was good to know that we aren't completely left without options. This was the key drug getting me well this summer. I think, I have plateued at the level I was on this summer, but hopefully, by increasing it, we can finally make some headway. We should know in the next couple of weeks. I do have to say that as soon as I began Rifampin, the excruciating bone pain and the migraine headaches lessened. So, we know it's still working to some extent. We just need it to work where it helps me beat the infection instead of just keeping me stable.
We talked to her about the possibility of pursuing a diagnosis of a mast cell disorder. What was exciting was that my doctor and the PA are currently really reasearching this right now. A patient (the friend who brought it to my attention) told him about it, and he took action. I am so thankful for a doctor who doesn't claim he knows all the answers. He is always willing to research and try things to help his patients get well.
They are wondering if this is a big key in some of their patients who have the horrible allergic reactions and chemical sensitivities like I do. The testing isn't always reliable (for most of the tests you have to be having a reaction at the time the test is performed or have had one recently for it to show up positive). What a lot of physicians do is put you on the treatment protocol and see how you respond. So, she has prescribed me the protcol and we are going to give it a shot. It is a relief that for now, I don't have to go through the biopsies (No Fun!). It will be interesting if all of these medications finally stabelize my system. Even though it would be hard to know this condition is permanent, it would be so amazing to finally get some relief from my reactions!
Now onto the water issue....I spoke to the PA and they want me to get a PICC line inserted so I can do IV fluids at home. Ugh, I just didn't want to have to do IV anymore. It's so stressful, and very inconvenient. Plus, a PICC line is much more restrictive than a PORT not to mention the increased risks of clots and infections. The thing is, you have to have a local doctor write a script to have it inserted at a local hospital or you have to go to San Francisco to have it done by the surgeon that my doctor works with. Obviously, I am not in the best condition to travel to SF, and Brian really can't take off work. We wanted to pursue it locally first.
I already had an appointment set up with my local doctor (who is totally against my Lyme and Bartonella diagnosis). I knew this was a REALLY long shot, but I wanted to take it because I am miserable. I thought, maybe, she would consider it since it doesn't have to deal directly with Lyme Disease (from her viewpoint). I did have my doc's PA call my local doctor to give her heads up about what the issue was. The PA called me right before my appointment and her words exactly were "Good Luck". Apparently, the phone call didn't go well, and we found that out really quickly during our appointment. My local doctor refused to do a PICC. She said we need to find the cause (which I agree with; however we are highly suspicious it's just the infection getting worse), but we appeased her. She is doing a number of tests on me. I guess it's good that she is actually willing to pursue something (the last time I was in there and gave her all my symptoms, she said "we just aren't going to figure those out" - basically telling me to live with them).
The one thing she did say was that my thyroid was a little on the high side. So, we are going to try lowering the dose and see what happens. That could account for the racing heart, but how that relates to the water issue, we aren't sure.
This is a great example of Lyme patients have to battle to get help. It's a struggle to make it through each day with all of these crazy symptoms. Most people would drive themselves to the ER when their arms and face go numb or when the room spins and you are short of breath for the 27th time that day, but not Lyme patients. They battle through the crazy symptoms while at the same time trying to convince the standard western medicine doctor that they are sick and need help. Whatever happened to doctors listening to patients and actually wanting to help them feel better? That is lost in the buracracy of insurance companies and managing risk. I walked out of my appointment today sad. I was sad knowing that what I experienced is what people all over the United States are experiencing every day. I am fortunate to have a brilliant Lyme doctor to help us through this nightmare, but so many people are not. I pray with all my heart that this changes some day.
Where do we go from here? Well, we are going to try and lower my thyroid meds on the off chance that it what is causing me all of these issues. That would be amazing if that resolved my water issues. However, if I don't improve, we will probably pursue getting a PICC because my body just can't live in this state forever. My local doctor did kind of give us a guideline to go by as what is just annoying dehydration symptoms verses what is dangerous and you need to go to the ER. So, we will keep a close eye on it and adjust accordingly. Please pray that this resolves.
Another thing that I am going to attempt to do is try to find a local doctor who doesn't avoid my issues and will actually work with us. It's tricky to even find a doctor who will accept you as a patient with my list of issues not to mention that the word "Lyme" on a medical chart scares away about every physician. I honestly have been denied outright by 4 physicians. They won't even let me come into the office for an appointment. Isn't that unbelievable? I have to say that even attempting to locate a doctor or to go through the "try out" phase exhausts me before I have even started the process. However, after we left today, we knew that our time with this physician was limited. So, please be praying for a miracle! Pray that God guides us to one quickly that takes our insurance and someone who is willing to help us navigate through this journey. Thanks friends! I will post updates when I can!
Friday, October 21, 2011
Thursday, October 20, 2011
Too Long...
Wow! I have been a really bad blogger lately. Sorry about that. I want to do it more, but we have some crazy health stuff going on and between that and working, I just don't have a lot of time or energy these days. It's been way too long, so I thought I needed to write this before a month goes by and I have to write you a book to catch you up on everything. Before I start giving you an update, I want to give you a set of verses that have really been encouraging lately.
"My soul, wait only upon God and silently submit to Him; for my hope and expectation are from Him. He only is my Rock and my Salvation; He is my Defense and my Fortress, I shall not be moved. With God rests my salvation and my glory; He is my Rock of unyielding strength and impenetrable hardness, and my refuge is in God! Trust in, lean on, rely on, and have confidence in Him at all times, you people; pour out your hearts before Him. God is a refuge for us (a fortress and a high tower). Selah [pause, and calmly think of that]!" Psalm 62:5-8 Amplified Bible
I am not sure if I have posted these verses before, but I stumbled across them the other night during my devotional time. I love how the Amplified Bible describes the Lord, our Rock, with "unyielding strength and impenetrable hardness". I imagine the Lord as my protective barrier who won't let anything get to me without first going through Him. I also like how it definites trust. Sometimes, I just need things spelled out for me. I know that I am supposed to rely on God for everything I need, but I like how this version of scripture states what exactly "trust" looks like.
I do want to say that we found out that Brian did PASS the CPA exam! We are so thrilled!! Now, all he has to do is finish his class and complete a couple other steps. His goal is to try and get it done by Christmas, but work has been crazy for him and my health hasn't been good. So, it's looking like that might not happen. All in God's timing though! :) I am so proud of him. I know having that part done is a huge relief for him.
I actually started this post a couple of weeks ago. However, life got crazy, I got sicker and it just got set on the back burner. Let me catch you up...
On October 7th, Brian and I got up at 2am to head to Albuquerque, NM to see the neurologist that my doctor recommended. We were really looking forward to this appointment. After my interaction with this physician on the phone and other things we had heard about her, we thought she would be a great addition to our medical resources. However, once we got there, it didn't go as well as we expected. She did know a lot about the autonomic nervous system and how the brain has been affected by the infections; but she really didn't give us any new tools. She was a pretty big proponent of using a line of herbals to fight the infection which would be great except that I am deathly allergic to the alcohol that it's preserved in. So, although it was nice to get out of Tucson and spend some time with my husband, we don't think we will be working with this particular doctor. It's sad because at this point, we are really running out of options.
Since I had the water issue that we thought was related to rifampin, and we were waiting for our appointment with the new doctor (who didn't want me taking antibiotics anymore), until this past Tuesday I had been off treatment (except for a low dose of amoxicillin) for 6 weeks. Let me tell you, this was NOT good. It has about killed my body. I won't list all of my symptoms, but let's just say they are worse than they have ever been. My body has also started not aborbing nutrients very well. So, my blood work is all funky.
Guess what popped up again last week? - The water issue! Fun times! Everytime I drank water, it would go right through me. It's like my digestive system has stopped being able to absorb it. I would get so thirsty that I would drink a ton of glasses, but I still had all the symptoms of dehydration. It got so bad and started doing funky things to my heart, so we ended up in the ER last Thursday. Of course, they couldn't figure out what was causing it (especially since I haven't been on Rifampin), but we went to the good hospital, so they actually didn't question any of my diagnosises. They gave me IV fluids, and I actually was able to retain the water. So, it has something to do with my digestive tract. They had never heard of that before. I am not surprised, lol. I tend to not be a textbook case. CRAZY! The water issue comes and goes. Some days are better than others.
Another development that we are going to pursuing is the diagnosis of a condition of Mastocytosis or a form of it called Mast Cell Activation Disorder (MCAD). It was kind of a God thing how this came about. For awhile now, my Lyme doctor has been puzzled why I am so reactive. I did seem to improve this summer when we got the infection down, but my body is just so fragile, and I never recovered fully. Seven years ago, I stumbled across this disease, but frankly, it scared me, so I put it on the back burner. I also didn't have the blood or other lab markers (Mayo Clinic did test me for it), so we put the idea to rest. However, last week, two different people (a friend and my nutritionist) w/in 24 hours randomly brought this to my attention.
Bascially, Mastocytosis is where you body makes too many mast cells (histamine cells). It seems harmless, but it's not. It can cause a lot of trouble in your body. You can be born with the systemic version or you can acquire it later in life either set off by toxic chemical exposure or an infection (we are guessing it's infection for me). When I started researching the symptoms list, I realized that I now have about 21 out of the 29 symptoms. What is interesting is that in the last 3 years, they discovered a lighter version of the disease which is called MCAD. People who have the lighter form don't necessarily have the blood and other lab markers, but they do often show up positive if you did a skin biopsy or a bone marrow biopsy.
There are different forms of this disease and one version is malignant. However, the chance I have that version is extremely small. All in all though, it's a bit scary having to go through this process. It's also frustrating because my local primary doctor doesn't want to look into it, and my allergist wouldn't let me have an appointment because he has stopped seeing patients who aren't interested in allergy shots. Ugh! My Lyme doctor will be more than willing to pursue it and learn about it, but we just wanted to find someone locally who was familiar with it and could help us for once. We don't know how invasive we will get as far as the testing goes. I have had so much severe bone pain lately that we are considering a bone marrow biopsy, but I wish we didn't have to make these types of decisions ourselves. There is an AMAZING clinic in Boston, MA that has the top researchers in the world who specialize in this disease, but that is WAY too far for us to drive. So, once again, we are in a dilemma. AHHHH the constant drama gets old. :P
So, that's where we are at. We are exhausted and emotionally drained. It's been hard to try and come to grips that there is a high likely hood that I have a permanent disease on top of all of these infections. Again, when we have gotten the infections under control, things somewhat improve, but if I have this condition, this could be the cause of why I don't get totally well. That's really why I haven't updated. It's just hard to put this all into words. I thought about not writing about this until we have an official diagnosis, but we need prayer. We are desperately praying that someone will help us pursue this new condition. We need to know if this is playing a factor as to why I am not getting well. We are also praying for all test results as far as this disease to come back negative. If you would join with us, we would appreciate it. Please also be praying for our emotions and stamina. I can't tell how hard this last month has been. God is sustaining us, and we are hanging in there, but we really need for things to take a turn for the better. It's hard to watch my body keep crashing because we know it can only take so much. Also, please be praying for my job. I love it, but it's getting harder to make it through each day. It's super busy right now which is great for us financially, but very difficult when I have to work 10 hours a day. Thankfully, I can work from my bed, but it's still hard.
Well, I need to try and get some sleep since I actually have about 2 hours here before my phone appointment with my doctor's PA. I will try and update you this weekend. Thanks for praying friends!
"My soul, wait only upon God and silently submit to Him; for my hope and expectation are from Him. He only is my Rock and my Salvation; He is my Defense and my Fortress, I shall not be moved. With God rests my salvation and my glory; He is my Rock of unyielding strength and impenetrable hardness, and my refuge is in God! Trust in, lean on, rely on, and have confidence in Him at all times, you people; pour out your hearts before Him. God is a refuge for us (a fortress and a high tower). Selah [pause, and calmly think of that]!" Psalm 62:5-8 Amplified Bible
I am not sure if I have posted these verses before, but I stumbled across them the other night during my devotional time. I love how the Amplified Bible describes the Lord, our Rock, with "unyielding strength and impenetrable hardness". I imagine the Lord as my protective barrier who won't let anything get to me without first going through Him. I also like how it definites trust. Sometimes, I just need things spelled out for me. I know that I am supposed to rely on God for everything I need, but I like how this version of scripture states what exactly "trust" looks like.
I do want to say that we found out that Brian did PASS the CPA exam! We are so thrilled!! Now, all he has to do is finish his class and complete a couple other steps. His goal is to try and get it done by Christmas, but work has been crazy for him and my health hasn't been good. So, it's looking like that might not happen. All in God's timing though! :) I am so proud of him. I know having that part done is a huge relief for him.
I actually started this post a couple of weeks ago. However, life got crazy, I got sicker and it just got set on the back burner. Let me catch you up...
On October 7th, Brian and I got up at 2am to head to Albuquerque, NM to see the neurologist that my doctor recommended. We were really looking forward to this appointment. After my interaction with this physician on the phone and other things we had heard about her, we thought she would be a great addition to our medical resources. However, once we got there, it didn't go as well as we expected. She did know a lot about the autonomic nervous system and how the brain has been affected by the infections; but she really didn't give us any new tools. She was a pretty big proponent of using a line of herbals to fight the infection which would be great except that I am deathly allergic to the alcohol that it's preserved in. So, although it was nice to get out of Tucson and spend some time with my husband, we don't think we will be working with this particular doctor. It's sad because at this point, we are really running out of options.
Since I had the water issue that we thought was related to rifampin, and we were waiting for our appointment with the new doctor (who didn't want me taking antibiotics anymore), until this past Tuesday I had been off treatment (except for a low dose of amoxicillin) for 6 weeks. Let me tell you, this was NOT good. It has about killed my body. I won't list all of my symptoms, but let's just say they are worse than they have ever been. My body has also started not aborbing nutrients very well. So, my blood work is all funky.
Guess what popped up again last week? - The water issue! Fun times! Everytime I drank water, it would go right through me. It's like my digestive system has stopped being able to absorb it. I would get so thirsty that I would drink a ton of glasses, but I still had all the symptoms of dehydration. It got so bad and started doing funky things to my heart, so we ended up in the ER last Thursday. Of course, they couldn't figure out what was causing it (especially since I haven't been on Rifampin), but we went to the good hospital, so they actually didn't question any of my diagnosises. They gave me IV fluids, and I actually was able to retain the water. So, it has something to do with my digestive tract. They had never heard of that before. I am not surprised, lol. I tend to not be a textbook case. CRAZY! The water issue comes and goes. Some days are better than others.
Another development that we are going to pursuing is the diagnosis of a condition of Mastocytosis or a form of it called Mast Cell Activation Disorder (MCAD). It was kind of a God thing how this came about. For awhile now, my Lyme doctor has been puzzled why I am so reactive. I did seem to improve this summer when we got the infection down, but my body is just so fragile, and I never recovered fully. Seven years ago, I stumbled across this disease, but frankly, it scared me, so I put it on the back burner. I also didn't have the blood or other lab markers (Mayo Clinic did test me for it), so we put the idea to rest. However, last week, two different people (a friend and my nutritionist) w/in 24 hours randomly brought this to my attention.
Bascially, Mastocytosis is where you body makes too many mast cells (histamine cells). It seems harmless, but it's not. It can cause a lot of trouble in your body. You can be born with the systemic version or you can acquire it later in life either set off by toxic chemical exposure or an infection (we are guessing it's infection for me). When I started researching the symptoms list, I realized that I now have about 21 out of the 29 symptoms. What is interesting is that in the last 3 years, they discovered a lighter version of the disease which is called MCAD. People who have the lighter form don't necessarily have the blood and other lab markers, but they do often show up positive if you did a skin biopsy or a bone marrow biopsy.
There are different forms of this disease and one version is malignant. However, the chance I have that version is extremely small. All in all though, it's a bit scary having to go through this process. It's also frustrating because my local primary doctor doesn't want to look into it, and my allergist wouldn't let me have an appointment because he has stopped seeing patients who aren't interested in allergy shots. Ugh! My Lyme doctor will be more than willing to pursue it and learn about it, but we just wanted to find someone locally who was familiar with it and could help us for once. We don't know how invasive we will get as far as the testing goes. I have had so much severe bone pain lately that we are considering a bone marrow biopsy, but I wish we didn't have to make these types of decisions ourselves. There is an AMAZING clinic in Boston, MA that has the top researchers in the world who specialize in this disease, but that is WAY too far for us to drive. So, once again, we are in a dilemma. AHHHH the constant drama gets old. :P
So, that's where we are at. We are exhausted and emotionally drained. It's been hard to try and come to grips that there is a high likely hood that I have a permanent disease on top of all of these infections. Again, when we have gotten the infections under control, things somewhat improve, but if I have this condition, this could be the cause of why I don't get totally well. That's really why I haven't updated. It's just hard to put this all into words. I thought about not writing about this until we have an official diagnosis, but we need prayer. We are desperately praying that someone will help us pursue this new condition. We need to know if this is playing a factor as to why I am not getting well. We are also praying for all test results as far as this disease to come back negative. If you would join with us, we would appreciate it. Please also be praying for our emotions and stamina. I can't tell how hard this last month has been. God is sustaining us, and we are hanging in there, but we really need for things to take a turn for the better. It's hard to watch my body keep crashing because we know it can only take so much. Also, please be praying for my job. I love it, but it's getting harder to make it through each day. It's super busy right now which is great for us financially, but very difficult when I have to work 10 hours a day. Thankfully, I can work from my bed, but it's still hard.
Well, I need to try and get some sleep since I actually have about 2 hours here before my phone appointment with my doctor's PA. I will try and update you this weekend. Thanks for praying friends!
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