Friday, November 30, 2012

Will I ever feel normal again?

I'm not having a good week physically or psychologically. My muscle pain returned very strongly in my calves. I could not walk up stairs yesterday without extreme pain. I'm also not able to eat a normal amount. I'm lucky if I can consume 500 calories per day and it's been like that all week. Most of the 500 calories are from liquids. My hands were frustrating me beyond belief the other day because I couldn't button an outfit.

I started thinking about long-term again which is never good.......but I couldn't help it. I never expected this to happen. I worked so hard all through high school and 6 years of college so that I could be successful in life. Then right in my last year of college, I contracted or re-activated Lyme. Since then it's mostly been a downward spiral with very limited (if any) lasting improvement.

I know several of the big name LLMD's (and my own) have said that there is a certain percentage of people (10% or so) that do not get better with treatment. For those people, they still don't know what to do to help them. I'm starting to think I'm one of them. 

Everything I've worked for is meaningless now. I can't do what I was trained to do. I can't even complete simple tasks sometimes. I'm so worn out and run-down. I have to focus on just making it through each day and instead of looking forward to days ahead, I dread them. I wish that Lyme had a cure and that it had not ruined my life and so many other people's as well.

Friday, November 23, 2012


Well I made it through another Thanksgiving and I'd like to try to list a few things that I'm thankful for this year. Overall, I'm thankful for many things: my family, friends, pets, etc.

I'm thankful that my immediate family is supportive of my Lyme diagnosis. I come from a family that NEVER takes any medications. I was expecting some of them to have an issue with the number of meds I take but all of them are fully supportive of my protocol and the diet I have to follow. My sister made a gluten free apple pie (without any added sugar) and my mother made stuffing with gluten free bread and separate potatoes that I could add almond milk to this year.

I'm thankful that I was able to eat a small amount of food over the past few days. I hadn't been eating well for a while. I was able to eat some turkey, gluten-free bread and pie. I did get sick afterwards and fell asleep very ill for a few hours but at least I ate something.

I'm thankful that I was able to help people that were trying to get some sale items on Black Friday. I actually made it a full day of shopping. I did have to use excessive B-vitamins, green and ginseng tea, CoQ10 and magnesium but at least I did it. I'm lucky that I had a good IV this week that lasted me. 

Last year on Thanksgiving I was still trying to figure out what was wrong. I knew I had Lyme but I couldn't get a doctor to test or treat me for Lyme. So even though I'm not doing too well physically lately, I am very thankful that I have several doctors that are willing to put in the time to attempt to help. I'm thankful that my liver is finally cooperating so that I'm able to stay on a fairly strong combination. I'm also thankful that I am not in such a desperate, depressed psychological state of herxing like I was a few weeks ago.

Monday, November 19, 2012

Aftermath of the Herx

This picture says it all. The cloud is lifting, but I'm still in a cloud.

That was a tough few weeks of herxing. It was the worst herx I've ever had. For a while I could not even type or use my hands and arms to be able to hold a fork or eat.

I didn't get a call from the office after getting my blood work done, so I am assuming at least my liver and kidneys held up through that massive herx. I'm starting to feel a few things calming down. At least I'm no longer depressed to the point that I feel like giving up on life like I was a few weeks ago.

I had a really good few hours after a vitamin IV recently. I went running a short distance. It was the first time in many months. I had to stop pretty quickly and walk because I'm still tasting blood in my mouth and it triggers a lot of lung and heart pain. At least I felt up to attempting it though. I haven't even been able to go on decent walks in a long time. The IV worked really well this time. I'm so glad because I really needed a break.

The rest of the week didn't go as well though once the IV wore off. I'm still incredibly run-down. I can't tell if it's due to the herx's aftermath, the weather, or just my normal weekly cycle of symptoms. Whatever it is, it's not fun. I needed to go and get some ingredients to make a dessert for Thanksgiving this weekend and I wasn't able to leave the house. I was extremely exhausted and for no good reason.

I'm at a point now that I don't know what to do. How long is too long to wait for some improvement on a combination? Do you wait it out long-term even though you aren't feeling significant positive changes or do you change things frequently until you do get a magic combo that moves you in the right direction?

I've tried a lot of combos but I haven't found any magic one yet. I was stagnant for most of the summer and I had significant improvement in my 2nd week of adding bactrim and biaxin. What now though? I'm slightly worse than normal. How long do I let it stay like that before trying to make a change?

Sunday, November 4, 2012

Flu-like Herx is Back

First of all, isn't this the coolest bed? It really has nothing to do with this post, but I would love to have a bed like this so I could lie around happily.

I've been posting nearly daily this week. It's been such a difficult week for me. The lack of a nutrient IV is part of it. That was not smart of me to skip it in my 3rd week of new meds. I should have known. Like clockwork, I always have a moderate to severe herx in the first week of a change or increase in dose and a SEVERE herx in the third week.

Last night I had to work for a few hours.  I felt TERRIBLE. I was freezing cold like hypothermia with extreme body-wide aching. I had to wear leggings under my jeans, 3 shirts, a winter fleece and a winter coat and I was still shaking uncontrollably in a room that was heated to 70 degrees.

This morning has not been an improvement. Now I have dry eyes and a swollen throat as well. I probably have a fever, but I can't get out of bed to find a thermometer. This is one of the strongest flu-like herxes that I've ever had. My other strong one came from Mepron, and then another when I started Plaquenil.

Sadly, the turmeric doesn't appear to be helping the pain, but I'll keep taking it. Maybe it's cumulative. I'm also thinking of taking some olive leaf extract today in case this really is a virus of some sort. However, I don't think it is. This is my typical herxing pattern. I don't know which one of my meds is causing this, but at least I know that since I'm on a strong combo, it's probably not progression. 

Between the extreme muscle pain, exhaustion, flu-like stuff and the lack of coordination of my hands, this has been a fun week! I wish I could just sleep for the rest of the week to recover from this. Unfortunately I only have today to try to improve enough to be functional.

On top of this, I just pulled about 6 ticks off my dog today. Several of which I accidentally exploded between my fingers (after removing them) due to my hand inaccuracy. Hopefully I'm not adding to the infection through my skin somehow.  People have often joked to me that with all the tick bites I've had since February last year, I'm infecting all the ticks!

Saturday, November 3, 2012

Getting so weak

It's been about 3 weeks since starting my new additions to the combo (bactrim and biaxin). It's been a week since I doubled Ceftin. I've been on Rifampin and Plaquenil for many months. I feel absolutely terrible today. I literally have no strength in any of my muscles. It is taking me hours to write this because my hands are trembling and numb. So please excuse any typos because going back to correct them is an ordeal today.

I'm on a strong combo now. This is what I wanted. I asked for this. My liver is cooperating so far so I don't want to back down. I knew the 3rd week would be bad. I just hope that this time it doesn't stay bad like it usually does from week 3 on.

So my main symptoms right now are extreme fatigue and weakness. I literally could not hold onto a fork due to extreme weakness and mild trembling in the muscles of my arm. I have no appetite, but have lost a little more weight so I've been trying to make sure I eat enough. That's hard to do when you're exhausted just from lifting a fork.

I also have extreme burning muscle pain in all of my muscles. Last night I couldn't even touch my legs because they hurt so badly. I tried some turmeric as was suggested to me by a doctor. I don't notice any improvement yet, but I know it's probably a cumulative effect and won't work quickly.

The muscle spasms are also pretty bad and at night I am sometimes getting a feeling of suffocation which many call "air hunger." It's usually a babesia symptom. I have not had much of this up until the last few weeks.

 Last night I had tremendous pain under my right rib cage. I literally could not shift the way I was sleeping without extreme pain. Had I not just done a liver test, I would have thought something was seriously wrong in that regard. It's gone today for now.

This is rough. I hope it gets better. I thought not being able to go running was a huge loss. Now I can't even attempt to walk my dog a short distance. In addition, I lost most of my income. For some reason I'm still not extremely upset by any of this. If anything, I'm probably happier than I've been in a while although I have no idea why. To be happy at a time like this doesn't even make logical sense. Maybe one of the meds is affecting my attitude or maybe I'm just in shock :).