Saturday, July 28, 2012

Flip Flopping

I don't know what's going on the last few weeks.

I've been getting a few GREAT days after my IV and then when it wears off I get really bad days. A few weeks ago I was just weak all the time and slightly better after an IV so I guess this is an improvement? Now I can make it to the end of the day with the help of my 2nd dose of cortef and for some reason, added salt.

The other day I was able to go for my usual weekly jog. On the way, I saw a beautiful (very young) deer. It bounded off into the woods only to reemerge in front of me a few minutes later on the trail. This deer actually followed me for about 2 miles in the woods. It ran along side the trail and would periodically dart out in front of me and face me twitching his ears. It was so close several times that I could have touched it. The deer had absolutely no fear of humans.

A different day, I went swimming with some kids that I have known for many years. One of them wanted to do training for swim team so we swam back and forth in their pool for over 100 laps. I generally don't care for swimming much, but that day I wasn't able to go running so I was happy that I would still be able to do something active.

Nothing makes me feel as good as jogging. Sometimes I have tried to keep the jogging up after my glutathione IV wears off thinking it would help increase my energy. That works occasionally, but usually by the time my IV wears off, I have an extremely difficult time jogging or even making it for a walk and going to work.

When the IV wears off, I get a very low time starting at about noon. I usually hurry and take my second cortef, but if that doesn't kick in fast enough I find that drinking something salty usually helps. The first few days I tried the salt (either salt water or V8) and it helped a LOT. It completely turned my energy around. The last few days the result hasn't lasted as long. The salt will give me a 45 minute period of being able to function and then I crash again.

I think I might be slightly improving but I'm not sure. I want to give it more time. I hope my LLMd doesn't expect miraculous things because I don't have that yet. However, I don't want to go off this combo yet. I'd rather add to it and I DON'T want to go somewhere else either. I have confidence in my LLMD even though he seems worried lately.

The numbness and twitching have been bad lately. I'm freezing cold most of the time to the point that it wakes me up at 3:00 a.m. almost every day. My neck hurts and my joints are very painful as well. I get very strange and sudden weakness with a lot of dizziness. My appetite is also becoming extreme again which makes me think babesia may be returning.

So a few things have improved:  One is the positive effects of my glutathione IV. I'm back to getting really good days from it. I'm also able to make it through the day until evening most days without falling asleep and I am sleeping better at night. My appetite is also improving (although it is becoming extreme again. Things are so scattered that even though I keep meticulous track of my symptoms I'm having a hard time lately.

Now I have to start thinking about what I want to add to my protocol. I'm hoping my liver is holding up fine. I assume it is.

Tuesday, July 24, 2012

Knee Pain

Tonight I'm having pretty severe knee pain. I have not been able to fall asleep for more than an hour at a time. I've been up about 5-6 times and it's not even 3:00 a.m. The pain is getting worse the farther I get away from my jogs/walks. It feels like my knee is going to explode. I cannot WAIT to get my glutathione this week. I need it so badly for pain.

The only thing I take during the week for pain is advil when it's really bad, but it doesn't really do anything so usually I just try to wait things out. I am afraid to take any type of prescription pain meds. I have tried a few natural ones like flax seed and bromelain, but they don't seem to help either.

I'm not sure what I'll do. I'm so exhausted and I already tried my new trick of loading magnesium to encourage sleep for the night. I may need to resort to benadryl soon and just sleep late today. It will at least knock me out so I can get some sleep despite the pain.

Sunday, July 22, 2012

I hope this isn't Bell's palsy starting.........

For the last few days I have been getting a weird sensation on the left side of my face. It feels like how my hands and legs get right before they lose feeling and become completely numb. It's like a tingling sensation similar to when novocaine spreads to your cheek at the dentist. Luckily, so far, it only lasts about a minute each time. The episodes have been happening about 10-15 times per day.

I hope that I don't lose the feeling in my face soon and develop Bell's palsy. This all started happening when I increased doxy from 200mg to 400mg. I have been on Rifampin for a month and Nystatin for a LONG time. Florinef and Cortef for about 2 weeks.

 I had an okay day the other day despite my blood pressure being "out of range" on the store machine. Hopefully that's nothing to worry about. I tried adjusting when I took the Cortef. Instead of waiting until I became overwhelmingly tired, I took it slightly before. It seemed to work. I tried the same strategy luck.

Over the last few days I have tried to increase my energy by continuing to force walks and short amounts of jogging after my glutathione wore off for the week. Usually I feel better after going jogging and have MORE energy so I was hoping I could force some improvement if I tried to keep it up despite being off the positive effects of my IV.

 It worked............. for a few days. I felt like it was helping the cortef/florinef combo. Then I felt TERRIBLE out of the blue today. I have a headache and neck ache which are very rare for me while on meds. I also have extreme pain, dizziness and exhaustion again. It kind of feels like a severe flu without the fever. I'm so out of it. It's rare for me to feel this bad. It's also quite scary how suddenly and severely it came on.

Just when I think I may be on to something I'm not. Oh well. I need to figure out something and I'm going to keep trying. Hopefully my LLMD will be in a better mood next time and he'll have another idea to try other than sending me somewhere else.

Wednesday, July 18, 2012

Trying things on my own

So I haven't had a lot of improvement on my combo of Rifampin/doxy and the addition of adrenal support. My doctor is getting worried and is starting to suggest that I may need to go to someone else. Because of my financial situation, I am unable to and I am very worried that I will be dropped as a patient from my LLMD.

Today I decided I would try to figure something out on my own to elicit some improvement before my next appointment. I went to the store and decided to add some more supplements. I can't afford to do a ton so I followed some of his suggestions and added some that I researched on my own.

I am going to get more aggressive with taking my supplements routinely. I have been slacking on them. I don't get a ton of advice about supplements unless I specifically ask. I took a break to let my liver calm down and I've been afraid to go back on since finally getting normal enzyme levels.

So I'm now adding calcium, d3, b-complex, methyl b12 sublingual, flax seed, and kyo-green energy. I am going to be getting more on schedule with ALA, NAC, milk thistle, and magnesium (which I have had to increase to 2000mg to stop my twitching lately). I'm also increasing my decaf green tea intake.

Hopefully something will turn around soon. I am pretty worried. I have a VERY hard time trusting doctors and I was just starting to trust my LLMD's judgement after seeing him routinely for months. I don't know what I'll do if he turns me over to someone else. If that happens, I will be out of luck as I cannot afford treatment or appointments with the other area LLMD's.

I also am having some issues this week with blood pressure. I felt really cold the other day amidst the heat wave and I was also very dizzy and weak. I checked my blood pressure in a store and it said "out of range." The machine was working for others so I walked around a while and tried again about 30 minutes later. When I got a reading it was 83/60. I'm on meds that are used to raise blood pressure (florinef and cortef). I'm thinking this isn't good...........

Monday, July 16, 2012

Lyme Symptom Tracking Chart

I am someone who likes to keep track of my symptoms on a chart for my LLMD. I feel that by writing things down, I'm more confident that I'm not forgetting to mention something that may be important. Sometimes I also just don't want to bring things up in conversation. Writing it down seems a lot easier. Then my LLMD can determine if it's something we need to discuss. It makes the appointments more streamlined and leaves extra time for questions and discussing treatment plans.

So when I go for an extended amount of time between appointments, I make sure that I bring a chart that describes anything that has changed since I last met with him.

I have posted a sample chart as a template for anyone to use. Feel free to share it with anyone who may need to keep track of symptoms for their doctor. To access the template click here. Then you need to click file and download the form to save it to your computer and fill it out with your info.

Sunday, July 15, 2012

Are all Pharmacies Like This?

Since I really have never needed to use a pharmacy for anything, I don't have much experience with them. However, the experiences I've had since needing  to use them have not been good. I am in a VERY rural area. The nearest pharmacies are between 40 and 60 minutes away from me. So when I need a prescription, I want to make SURE it's ready before I drive an hour to pick it up.

 Nearly every time either I call to confirm or  they call and tell me my order is ready and it isn't even in stock! A few weeks ago I drove up to pick up two. Surprise! They only have a record of one and can't refill it until they hear from my doctor's office yet again. Even though the office confirmed this script several times already that day! One time I have had a pharmacy call me to tell me that the dose is wrong and dangerous (untrue, the dose was on the low side of standard for the medication prescribed).

Most recently I told them to ship my order to my home and a week later, they called to tell me the order hadn't shipped and they were waiting for me to pick it up! I asked them why they didn't ship the order when it was billed a week before and I was told it was going out the same day. The response: "I'm not sure."  I have been out of this medication for many days now. It's not the kind of med that should be started and stopped. So I ended up having to drive about 3 hours (with traffic) round trip for the 4th time this week! The amount of time and gas that I'm spending on pharmacy errors is outrageous.

The scary thing is, the same situation has happened at 4 different pharmacies! Big chain pharmacies as well as privately owned small ones. I kept switching to see if I could find a decent one, but so far no luck.

Friday, July 13, 2012

LLMD Visit

So I had a visit this week with my LLMD to go over my liver results. To my disbelief, my liver enzymes were completely normal. This includes bilirubin which has almost NEVER been in the normal range. I was told by another doctor that the bilirubin elevation was a genetic mutation (Gilbert's Syndrome) but I always had my doubts.

Unfortunately, despite the good news on tests, I am not feeling well whatsoever. This seems to be a common problem for me. I feel better when my liver enzymes are high than when they are low. My weakness is the worst when my liver is normal. I can't understand it.

Lately I cannot make it through the day. I am struggling significantly. I fall asleep between 3 and 7 p.m. and then lie in bed for a few hours before falling asleep again for the night. Then for the entire time I'm awake between (morning and noon) I am so tired that I really can't do anything.

The exception to this exhaustion is right after I get an IV of vitamins and glutathione. Throughout the week I take the vitamins orally, but they don't do anything for my energy or symptoms. If I don't do something active after my IV, I feel like I'm wasting it. I've tried just resting after an IV and then it doesn't make it last any longer so I figure I'll take advantage of my one day of energy to get things done and go jogging or for a really long walk. That's one thing I will NOT give up. I am losing so much muscle and weight, that if I stop that weekly walk or jog I will likely be headed toward becoming bedbound.

I am currently trying a new option which consists of two steroids in extremely low physiological doses for adrenal support. As most with Lyme know steroids are VERY risky when you have Lyme and co-infections because of their immune compromising properties. I worry about taking even a low dose although I know a lot of LLMD's use this dose for adrenal support. So far it is not working for energy. I had EXTREME thirst after the first dose and drank a massive amount, but since then I have returned to my normal thirst level along with my normal level of exhaustion and other symptoms.

I hope something turns around for the better soon. I don't know how much longer I can continue to get worse. I'm afraid that soon some of my symptoms will become irreversible.

Tuesday, July 10, 2012


The other day I started noticing that I had a lot of bruises in a cluster, well more like a line down the side of my right upper thigh. This week I have been extremely exhausted (more than usual). I am struggling to make it through the day. I get to about noon and I really want to go to sleep. I stay like that until I get home and can lie down.

Once home, I either lie down and fall asleep for a few hours or I stay awake but very tired. It's like I'm so tired that I can't sleep sometimes. I'm also noticing some yellowing skin again. I know that's not a good sign with the liver issues I've been having. Rifampin makes me nervous about my liver.

I get the results of my first liver function test since being on Rifampin for 3 weeks today. I am hoping they will be okay, but since I'm not feeling any better on this protocol I'm not going to be too upset if I have to take a break or switch things up again.  

Lately I've been getting kind of scared. I used to be the person who was pushing my LLMD to try stronger doses and stay on meds. Fearless is how I would describe it. Ready to get these infections out of my body. Lately, with the weakness that seems to be getting worse, I worry that something worse than a herx or a harmless new or evolving symptom is going to happen. Like I will develop cirrhosis or have a heart attack. I'm afraid to do strenuous things and push myself because my body feels like it's going to give out soon.

If this protocol doesn't start working, I don't think I'll be as upset as last time about the suggestion of an MRI to get things into place for IV meds. I have up to this point been completely against IV's, but I'm starting to think that I may need them to stop Lyme from progressing. Maybe I can do them for a few months just to get on the right track and then switch back to orals. I don't know what I should do, but I can't keep getting worse like this.

Tuesday, July 3, 2012

Anxiety is Scaring Me!

Yesterday as I was near the end of my first Rifampin pulse, I started to get extreme anxiety and restless legs. My body felt terrible, but my mind was racing. I felt like I needed to exhaust myself. I needed to go running. My thought process was similar to the OCD I've had in the past about other things.

I went running in the morning. It was really hot out; mid-80's in the shade. I knew I was overdoing it because my dog could not keep up with me on the run. I went 5 miles. I came home and took a shower and tried to go to sleep because I was very tired. My body was tired, but my mind and anxious-feeling legs were preventing me from falling asleep. I could not relax.

Later that day I went running again! Another 5 miles. I came home and still had tremendous restlessness and stress. It lasted from 5:00 a.m. until midnight when I finally caved in and took some benadryl hoping it would help me get to sleep. Today is the last day of my first pulse and I am afraid to take any medication. Is this the type of thing I should call my LLMD about or is it just a herx? I hate calling every second. I already called once this month when my throat was swollen (again from Rifampin).

The anxiety and exercise OCD has happened once before. It was when I was taking Biaxin. My liver enzymes were also very high the last time this happened. I think this time it was more intense. It still does not feel like healthy energy. It's over-the-top and purely stress motivated exercise.

I'm happy that I seemed to herx on Rifampin, but so far I still don't have improvement from it. I guess it's too soon to tell, but I hope that soon I will have significant improvement. When that happens, do LLMD's keep you on that combo or do they switch it up again?