Ever Changing!

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!