Sunday, October 7, 2012

Lung Pain

This past month has been kind of rough for me. I started to have so much lung pain at night now. It used to be just when I tried to go running and now it's almost every time I lie down. I'm so restless every night because I have to contort my body in order to not lie on my back. Breathing aggravates the symptom.

I haven't been able to go running for at least 6 weeks. That is starting to get to me. Last week after my IV, I wasn't even able to go for a decent walk because I developed a bad headache that lasted several days. Headaches are very unusual for me while on antibiotics.

Overall I haven't felt like doing anything. I'm dreading activity and dreading things that I normally look forward to. Everything wears me out so easily lately and sleep doesn't help things. I get worse after I sleep. 

I go to my LLMD soon. I hope he's not in a discouraged mood this time. I actually have a lot of confidence in him even though sometimes he tells me that my case is too complicated or I may need to seek "outside" help. I hope he doesn't say that again. Those kind of statements create so much stress for me. I'm always afraid he's going to drop me as a patient and then I'll be in serious trouble because I cannot afford the other LLMD's in the area and I'm getting quite ill. I don't know what would happen if I was forced off treatment right now.............

To be frank, I know that Lyme treatment is basically an experiment. Whether I get biaxin, tindamax and doxy from him or from a well-known LLMD for $1000 per appointment, the meds are either going to work or they aren't. My lack of response to treatment is NOT due to my LLMD. It's due to not finding the correct combination and a number of other factors that many with Lyme deal with.

I have a combination in mind that I would like this month, but I'm not going to say anything until I hear what my LLMD wants to do. I feel like Plaquenil has stirred up babesia symptoms for me again. The headaches, abnormal hunger alternating with no appetite, severe chills, hot flashes, lung pain etc. Those are my obvious babesia signs. The problem is that I can't tolerate Mepron for extended amounts of time. I'll start, and a few weeks later my liver enzymes will go up despite all kinds of AGGRESSIVE liver detoxing. Then I'm not allowed to continue it.

I am a believer in Dr. B's and Dr. S's suggestion of 4 months or more for babesia treatment so that the life cycle of all the red blood cells have a chance to run their course. I don't want to restart Mepron if I can't take it for the full length of time that is required to at least have a chance of eradicating it.

My solution is a weaker babesia combo that I may be able to deal with for the 120 day life cycle. I'm thinking: Malarone, Bactrim, Zith and Ceftin or Doxy with a pulse of Flagyl. I could also stay on Plaquenil for a while and then pulse Flagyl later. I think that will be a good Lyme and Babesia combo. I can go back to Bartonella later. I've already been on Rifampin for 4 months.

I am hoping my LLMD has something similar in mind. It will be interesting to see if our ideas line up this time. Usually we're on the same page, but sometimes I think that he reads me wrong and thinks I'm subtly asking for a break when what I'm really getting at is that I want a stronger combination. He's very cautious with me lately in terms of dosages and constant blood work and I can't figure out why. I think he feels that I'm starting to push things too far in trying to deal with certain symptoms and herxes when he would prefer to back down during those times. Overall, I do trust him more than the other doctors I have seen. I have a very difficult time trusting doctors and I know that I would struggle with that if I had to see the other area LLMD. The other LLMD does not appreciate patient input so our personalities are not going to match up well.