Wednesday, October 31, 2012

Halloween!

This Halloween will be my 2nd one with active symptoms of chronic Lyme.

I used to love Halloween. I love scary stuff. Every year I try to at least go to 1 scary event. Usually I go to a haunted corn maze. You go in at night and you only have a flashlight. It's loaded with people trying to scare you and buildings to crawl through complete with strobe lights and chainsaws. Unfortunately, it's not the safest event and each year there are many people falling off the staircases and getting injured or slipping on the mud of the corn maze path.

One year I went with a family member down to Universal Studios for Horror Nights. That's a huge event with MANY haunted houses. We were expecting to be terrified as it has the reputation for being the scariest Halloween event in the country. Unfortunately, we were kind of disappointed. We didn't feel like the houses were significantly scarier than ones we have access to locally and the cost was astronomical in comparison.

One of the best Halloween events we've been to was put on by the volunteer firefighters of a very small rural town. It's a hayride around a lake at night. The fireman run out of the woods and lake and jump onto the hayride in costumes grabbing people through the slats. It's surprisingly scary.

Another event by a firefighter troup takes place at an abandoned summer camp in the cabins. Unlike at Universal, these small haunted events are less restrictive about the "no touching" policy which tends to make things a lot scarier. At least in Universal, you know the actors can't touch you. Not so for these local things.

Somehow, our group of people always seem to be the ones in charge of leading the group through the houses. Almost every year, we accidentally lead people the wrong way and end up behind the scenes. It's usually hilarious because the actors start screaming "go back, get out of here!" We can never tell if we should listen to them or if it's part of the act.

This year I stayed away from all the haunted stuff even though I really wanted to go. I have been having some strange episodes which are provoked by stress and sometimes by certain lights. I'm not positive whether or not they are seizures, but since haunted attractions tend to provoke some level of stress and also frequently have strobe lights, I thought it was best to avoid them this year.  I don't want to end up causing a scene at something that should be fun or ending up in an ambulance or hospital having to explain everything.

I'm not having the best week physically, so tonight I'm probably just going to lie down, watch TV and sleep in preparation for a busy next few days. 

This is the first year of my entire life that I am not having any Halloween candy. I am on a strict diet of no gluten, refined sugar or dairy and I stick to it 100%. Thanksgiving will mark the 1 year mark of staying on that diet.

My favorite Halloween candies sure are tempting though. Can you believe they are selling Cadbury scream eggs now? I love those and now you don't have to wait until Easter for them. I don't mind abstaining from candy though. I can still have some coconut milk ice cream and popcorn tonight.


Sunday, October 14, 2012

Trust Issues and Lyme

I met with my LLMD again to follow up  on some recent changes to my protocol. This time I decided that I would directly bring up my concern of being dropped as a patient. I based this concern on some things he has said to me several times. Apparently I was misunderstanding the situation because he said that he was not intending on doing that. That information takes a huge load of stress off me. I have been worried for months about potentially and unexpectedly being on my own with this.

I have been trying to hide the severity of a lot of my symptoms because I was afraid that if I started to get too sick, I would be sent somewhere else. My options are severely limited financially.  I'm starting to not be able to hide things anymore so I'm glad that I brought up my concerns and they were addressed. My LLMD probably thinks I'm very mistrustful of him specifically, but he should see what I'm like with other doctors for comparison!

I made some changes and I agreed to do a test at the hospital which I was previously VERY against. I decided that after the length of time I have been going to this LLMD, I am going to have to try to trust his judgement regarding certain things. I hate it when things get out of control and I have to depend on someone else to decide what the next step should be.

The problem with this test is that I have pretty severe germ OCD that my LLMD is not fully aware of. I have mentioned it casually but he has no idea how severe it once was or how difficult it is for me to even set foot in a hospital. I also have severe trust issues with hospitals after a very traumatic event that involved a close family member. I didn't tell him either of these things because frankly, there is nothing he or anyone else could possibly say or do to change these feelings in a short amount of time. I just need to rationalize and talk myself down. I don't need to add psychological disorders onto a permanent medical file.

 I will probably be able to hold things together while in the hospital, but as soon as I'm out, I'm very likely to completely break down. I had been getting a LOT better with OCD, but I'm worried that this test could put me over the edge and create a strong OCD relapse.

I'm also not looking forward to dealing with other doctors knowing what the consensus of opinions is regarding chronic Lyme. I'm not intending on discussing anything with them. They will not change my mind over to the IDSA point of view so I don't expect that I can change them over either. It's not worth the aggravation right now.

I'm going to act like I don't know anything about the test or why it's being ordered.  The ignorance act shouldn't be difficult to get away with since in my experience, most doctors tend to treat me like I don't know anything and shouldn't dare to question their judgement. It's hard to tell if that's because of my age, my gender, or the fact that I have chronic Lyme. I can't change the first two, but I don't need to add to the condescension by mentioning Lyme and arguing with them. I'm likely not going to get anywhere, and while they won't give my opinions a second thought, the things they say will stick with me and bother me for a long time.

After all, what do patients know about their own symptoms and their own bodies? I have a graduate degree in research, but I'm incapable of possibly being able to research or comprehend anything medically related according to some of these doctors. I hope they just do the test like they are being paid to do. I'm not asking for their opinions.


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.