Our appointment with my Lyme doctor in San Francisco went pretty well. It's always good to get his wisdom on our situation. We came armed with about two pages of questions, and we actually got through all of them. I love my doc. He is so relaxed even though he deals with a lot of intense health situations with his patients. He is definitely a perfect fit for my personality. :P We discussed about what happened in my body to make me crash like I did after I had been doing so well. He doesn't necessarily think it's because I took a two-week break from antibiotics. All that break did was tell us that the infection is still very present in my body. He thinks something else (an outside factor) caused the backslide. However, what that was, no one is really sure.
So, what do we do from here? Well, I am just too unstable to hit my body very hard with treatment. He thinks we are kind of on a tipping point. If we push my body too hard, we could tip over into a very bad place. So, he said our goal is to stabilize my system so that we can attack the infection big time some time in the future. This was a bit frustrating for me as I just want to be done with this whole thing. However, this isn't a sprint; it's a marathon. We do want to fight the infections, but we can't damage my body in the process.
One thing good about my doctor is that he has a large number of resources at his disposal. He knows a lot of incredibly amazing physicians who treat Lyme Disease in all different areas of medicine, and he loves to go at treatment with a team approach. So, he gave us a list of people to consult which included both a nutritionist (to help with my super challenging and restrictive diet) and a neurologist (she specializes in working with the autonomic nervous system-my main issue that causes me to be so unstable).
We decided that we are also going to work on fighting my Candida issue. For months now, I have been on maintenance treatment, but he thinks that the Candida might be causing my allergies to get worse. So, we are going to really go after it with a huge hope that this will help my allergic reactions and chemical sensitivities to calm down.
He did say that my extreme herx reaction when I took my antibiotics after my two-week break is a good sign that my Bartonella infection is still responsive to treatment. So, we are very thankful for that. We just need to get me to a place where I can tolerate using more intense drugs without causing my body to crash at the same time. I am terrible at waiting especially after being sick all of these years. So, you can imagine how this is a bit frustrating! Since Rifampin has been such a good drug for me, he wants to try to increase the dose to see if that will be effective before trying a different drug to fight Bartonella. We shall see what happens!
Our trip, in general, went smoothly. I never do very well in San Francisco. The hotel was fine, but I think the high mold count in that area always sets me off. So, Brian and I left early Saturday morning to drive back home. It's always nice to get out of town, but with all of the trouble I usually have, it's EXTREMELY nice to get back home to a more stable and controlled environment.
Once we got home, unfortunately, life did not go back to normal. I felt awful, and we had a new and unpleasant condition pop up. Starting last Monday, every time I drank a glass of water, it wouldn't stay in me longer than 10 minutes - lots of trips to the restroom! The condition is called Diabetes Insipidus. It's where your kidneys do not retain water because you have too much of a certain kind of hormone. For 4 days, I was in a constant state of dehydration. It was horrible, and I felt like I was just watching my body crash. We worked with my doctor quite a bit, and he ordered a test to determine whether or not my symptoms were caused by the above condition. We should hear back today. He told me to stop Rifampin because it is known for messing with the hormones in your body. It could be indirectly causing this issue. Thankfully, things are slowly improving. I am still having trouble keeping water in my body, but it's not as bad. I am not in such a crazy dehydrated state.
Since we have been off Rifampin, my Bartonella symptoms have gotten worse. My dysautonomia has come back full force. It's hard to get through the day with all of the symptoms. So, now you know why it's been so challenging lately! We have kind of been in survival mode. Brian had to take off work last Thursday so that I could go to the Urgent Care (we needed to make sure my dehydration wasn't in the danger zone) and then to go get labs drawn. He is so amazing! The sacrifices he makes for me are so humbling. I thank the Lord for him every day!
The final update is I have started working the neurologist that my Lyme doctor recommended. I had an initial phone consult with her yesterday, and she is extremely smart. She understood how Lyme has impacted my autonomic nervous system better than any other doctor has. She has an extensive background in biological neurology along with treating using holistic and integrative measures AND she takes insurance. Whoohoo! My appointment went well. Obviously, I am very sick (she only takes the sickest patients as my case was pre-screened), but it is good to now have her on our team. She will work directly with my Lyme doctor to help stabilize my system so we can go after the infection. We have such a long road, but it's good to have such amazing doctors on our side! We have an appointment in her office in New Mexico on October 7th. We are excited (but guarded since we have seen so many doctors) to learn about her approach and see how it will help me. We definitely trust our Lyme doctor's opinion. So, if he thinks she will be able to help me, we are hopeful!
Here are current prayer requests:
- Please be praying that I can consistently hold water in my system. The dehydration symptoms are very difficult to tolerate. It kind of feels like you are going crazy or just watching your body quit on you. Please pray for continued improvement! Please also pray for my dysautonomia to improve. I am having a lot of trouble with random tachycardia (rapid heart beat) and feeling like I am going to pass out.
- Please start praying for our appointment. We really need this new doctor to help upright my system. Until we do that, we can't hit the infections like we need to. Please be praying for my appointment on October 7th.
- Please pray that the infection won't get out of control as we try to stabilize my body. The doctor in New Mexico and my doctor in San Francisco are going to try to keep me on a low maintenance dose of treatment during this time. However, my Bartonella infection is getting worse by the day (the symptoms are increasing). Please pray that God place his hands on it and that He would protect me.
- Please that I will have endurance to make it through my job. I am working close to 40 hours a week from my house and from my bed. :) I am so thankful for being able to work virtually, but it's getting harder and harder to make it through each day.
- Please pray for endurance. This latest round has hit us hard. We just feel like we are in survival mode each day. We don't want to live like that. We want to be working for God's kingdom. Please pray that God would continue to use us even though we feel we have so little to give right now. Also, please pray against discouragement. We have a big battle up ahead, but God has given us a good medical team. Please pray that we continue to lay all of our cares upon Christ resting in the fact that he will provide financially, physically and emotionally.
We are still waiting on Brian's results from his CPA exam. He should find out this week! We are desperately praying that he passed this last section. Life is just too crazy to even think about studying for that difficult exam again. We should hear from my doctor today about what our next step should be with the current issues we are facing. I will try and update soon! Blessing to all of you!
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pray, pray, praying for you. you are on my mind lots these days.
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