Friday, June 29, 2012

Here Comes the Rifampin Herx!!

After going the week without any noticeable changes, I can safely say that I feel worse yet again after doubling the Rifampin dose. I didn't think it was possible to get any worse, but I have. I had two of the best days I've had in many months earlier this week after my glutathione IV. Then I started to feel pretty bad when it wore off.

The first thing that happened was extreme weakness and I was also very agitated and worried. I kind of felt depressed, like a total failure in life which is pretty out of the ordinary for me. I also had some pretty severe worrying/anxiety which is continuing (hence being up and writing this at 12:30 a.m.).

Next came the numbness. My legs and arms have gone numb so many times yesterday and today. Sometimes I'm having painful pins and needles, other times I just can't move or my limbs feel like something's holding them down.

I'm also having a lot of pain and weakness in my arms and legs. My muscles hurt really badly. I cannot straighten my arms or put them above my head. My knee has been very painful like it's not in the right place or something.

The fatigue is back very strongly and so is the insomnia. I was so tired today that I almost fell asleep at work. I was also freezing cold and wearing a blanket outside in 90 degree weather. It felt like I hadn't eaten in days. I thought eating would help my weakness, but it didn't.

My sense of smell has gone over the top since I started Rifampin. Every little smell is super strong to me. I also feel very strange. My body doesn't feel right. It feels like what I would imagine being drugged is like.

I'm a little worried, but I trust my LLMD, and I don't think he takes any unnecessary risks. If anything, he's probably one of the most cautious of the LLMD's that I know of. I just hope my liver is holding up. I notice a slight tint of yellow to my skin (which isn't unusual since my bilirubin is ALWAYS high). Sometimes I worry that some of my "herx" symptoms may really be a liver issue acting up.

Wednesday, June 27, 2012

Finally a Good Day!

After a few days of no improvement in my throat with benadryl and advil, I decided to try to drink some of my liquid Nystatin (anti-fungal). My tongue was getting completely white again so I figured Candida might be to blame. Luckily, a few doses gave me back my ability to swallow without pain and I was able to eat and drink again!

I was allowed to restart Rifampin and the rest of the week I felt the same as always. I was very tired with a lot of eye twitching coming back and hand and leg numbness returning. I don't think I've had a herx yet on it. I have felt this way for months whether I'm on or off meds.

I am not eating well and haven't been for a long time. I know that the amount of calories that I'm eating combined with the level of physical activity that I have to maintain at work is eventually going to catch up to me in a negative way. So now when I do eat, I make sure it is a very high calorie food like whey protein shakes in coconut milk, coconut milk ice cream (no sugar) and nuts.

When I went to my IV this week, I was not feeling well. I was extremely dizzy and getting very frustrated again because the last several times, my IV has not really helped me like it used to. The last time I had one, I tried to go for a walk and my heart started beating so fast and I became so instantly ill feeling that I felt like I needed to lie down IMMEDIATELY. I came home, took a cold shower and then started to throw up 3-4 times before I fell asleep in an unusually short amount of time (5 minutes or less). When I woke up I felt better for a few days, but my energy was not good enough for any further walks and definitely no running.

This week I was not in the best mood at my IV appointment. I was so tired that I just didn't feel like talking much. I feel bad about this now. I could have been friendlier. I started to get really dizzy during the IV. Likely from not eating much over the past several days. In the back of my mind I was thinking, there is no way that this IV can work well enough for me to go running this week. I'm way too weak and sick.

Well by some miracle, the IV actually worked better than it ever has! By the time I got home, I had a normal appetite and ate quite a bit. Then I decided to go for a walk which quickly turned into a 5 mile jog since I was feeling so good. I jogged up the steep hill with no heart problems. That is extremely rare for me lately. I had enough energy to jog up the hill that comes right before I get back to my house as well. I had absolutely no joint or muscle pain, dizziness or fatigue for the 6 hours that I was awake. I was even able to play one of my musical instruments; something I have not wanted to do for many months since I have lost the ability to move my hands as accurately as is needed to play with any level of skill. Then I had a good amount of sleep. Not anxiety ridden and not total exhaustion either.

I woke up at 5:00 a.m. the next day like always and most of my symptoms were coming back. I was pretty weak again already. However, this time I wasn't upset. I am SO happy that I got a few hours to go running and feel normal. I was really worried that I was going to lose that too. It's the first time I've gone that far without pain or symptoms popping up. With the way I've been feeling the last few months, I would have been happy with as little as 10 minutes of relief.

I will be happy to report the good day to my LLMD and the doctor that does my IV next week. I always feel like I have nothing but negative things to say. That's one reason I'm sometimes quiet at appointments. I don't want to be a chronic complainer and negative all the time, but there have been a lot of weeks lately that I really can't find anything positive symptom-wise.

Friday, June 22, 2012

Only Lasted 3 Days on Rifampin

Today was day 3 of a terrible sore throat. My throat was so swollen that I could not even swallow my own saliva without extreme pain. It was really hot outside today and I was so thirsty, but drinking was too painful; forget about even attempting to eat. I ended up calling my LLMD.

I did NOT want to. I knew if he heard the words "swollen throat" that I would not be allowed to continue taking Rifampin. I tried for the entire 3 days to take benadryl, gargle with salt water, take advil, eat garlic, drink tea, drink cold things, rinse with mouthwash etc. Nothing worked. I felt like my throat was getting worse so I decided to call. Now I have to go off rifampin for the weekend. I barely made it 3 days and I wasn't even at the full dose.

I am pretty worried as I've already been on a lot of combos and I'm running out of options. I've had allergic throat symptoms before from foods and this wasn't the same. This time my throat was very painful and swollen. When I'm having an allergic response, it's usually not painful and I often have some type of rash. My allergic reactions always improve with benadryl fortunately. There was no change to this sore throat even with high doses of benadryl. It didn't progress to breathing difficulty either. I don't think this was an allergic reaction, so on Monday assuming my throat improves, I'm going to call back and see if I can try to restart it.

Wednesday, June 20, 2012

I feel weird today

So today I woke up and took my first dose of Rifampin. I was a little worried about it. I was told to expect a headache. My doctor wanted me to wait to take it until daytime hours in case I had an allergic reaction or something I guess.

I definitely feel strange today but I can't tell if it's a herx or just a bad day. I've been feeling pretty terrible for weeks, so it would be hard to get significantly worse from where I was. I did have some new stuff come up today though. Coincidence, or is it the rifampin starting already?

Within about an hour of taking the first pill, I started to get a really sore throat. It felt like swollen tonsils. It hurts to swallow. I didn't have to go anywhere today so at first I just tried to catch up on some work on my computer. I wasn't feeling too bad, but my muscles and joint pain were kind of increasing and I noticed my twitching was back a little stronger than normal.

Then in the afternoon I started getting really tired and weak. My muscles were not working very well. I was exhausted going up my stairs. It was as if I had climbed 100 staircases instead of 1. I fell asleep for a few hours and woke up to some returning numbness and paralysis. My legs and my right arm were very numb. I couldn't feel them and I had no control to move them for about 10 minutes. Then I got tingling and the feeling slowly returned along with some lovely throbbing in my feet and ankles.

I feel very strange in my head today. Kind of like when you have a really high fever and you are in and out of awareness. You aren't really focusing on what's going on around you. I've been having waves of that all day. Several times I have just been lying down not wanting to do anything that involves my mind. I just stare at the fan not really falling asleep but not fully awake either. It's surprisingly worse of a disconnected trance-like feeling than I was getting a few weeks ago on Mepron.

I hope this is typical of Rifampin? I looked into side effects and it's so hard for me to tell what is a side effect and what's a herx.

Starting to Target Bartonella

I went to my LLMD the other day and I am going to be starting a new plan. Since the early winter I have been on many combos of medications and herbs to try to target babesia, erlichia and Lyme. I have had virtually no improvement over the past many months. In fact, in a lot of ways I feel much worse.

Despite the fact that I'm not improving, I do not take that to mean that something else is causing my problems other than Lyme and co-infections. Since all of my tests were "fine" and doctors didn't want to do anything to help me without abnormal blood work, I was on my own until finding a LLMD. I am very fortunate to have found one quickly. Although I have a strong mistrust of doctors in general, I do have some confidence in the LLMD that I am currently seeing. I believe that he has very good intentions and really nothing to gain from attempting to treat these infections.

So far, we have not used any medications or herbs that specifically address bartonella. I have always had suspicion that I may have had bartonella, but because I was afraid to go on levaquin and cipro, I never focused on the bartonella symptoms when I spoke with my LLMD. To be completely honest, I've tried to hide a lot of the bart symptoms, especially the psychological ones. I'm worried about having psychological things notated on a permanent medical file. I'm not sure how that works or who may have access to that in the future.

From the Checklist E-Book by Schaller, these are the bartonella symptoms I have right now or have had in the past:

  • Brain Fog
  • Obsessive thoughts or fear in excess of an event
  • Obsessive thoughts that intrude into the mind which are in excess of normal (germs mainly)
  • Irritability
  • Impatience
  • Restlessness
  • Seizures
  • Persistent rashes that last over 3 weeks
  • Nodules under the skin
  • Red Papules of any size
  • Stretch marks (mine are not typical of bartonella, they're white). 
  • Skin tags
  • Minor cuts or scratches heal slowly
  • Granulomas
  • Blurred vision
  • Arrhythmias of the heart
  • Palpitations unrleated to panic attacks
  • Insomnia
  • A temperature under 98.3
  • Sore throat with no clear reason
  • Unusual discomfort on soles of the feet
  • Puffy tissue on ankles
  • Bone Pain
  • Joint Pain
  • Muscle Pain
This list makes it seem like a lot, but there are many other symptoms on the list. To access the E-Book for free click here.

So because I have not had a great response to treatment, my LLMD asked me if I would be comfortable trying to go after bartonella. I was actually really happy to change things up. I am glad to be off Mepron for a while. I didn't feel like it was helping. The new plan is to stay on Doxy and add in Rifampin and probably add in a macrolide at some point. I will be pulsing Rifampin first at a half dose and then at the "full" dose followed by a rifampin break.

I am a little worried about the herxing. I was warned that it may be bad. I took my first dose today and the first thing I noticed was a sore throat returning within about 30 minutes of taking the medication. It feels like swollen tonsils. I'm most concerned that some of my neurological symptoms will get worse like paralysis/numbness in my limbs, twitching, seizures, headaches, etc.

The other thing I'm worried about is my liver enzymes. I know rifampin can be tough on the liver. I have been having unexplained liver enzyme elevations since before I even knew I had Lyme. It was pretty much my only abnormal test result; high bilirubin, the doctor said it was Gilbert's Syndrome but I don't think it is. A few times it has lowered to normal levels. The other day it went up even after I stopped meds. My ALT and AST have also been elevated several times.

My LLMD is usually obsessive about checking liver function (weekly and sometimes more than once per week). For some reason this time he's letting me go a few weeks without a test. I'm happy to have the break, but I hope my next test is not going to be alarming.

So I hope that this new plan works. I was getting really worried and upset that I wasn't improving but I'm in a much better mood now that I'm starting a new protocol and targeting a different infection. I'm hoping that something positive will happen with this combo.

Tuesday, June 19, 2012

Can't get any Blood?

The other day I went to get my typical weekly lab work. My doctor was going to check electrolytes, magnesium and liver function. The nurse needed 3 vials of blood.

I had a really good nurse. She is actually my favorite as she has a good sense of humor and she is usually able to easily get a vein and draw the blood with no issues. Today was not great though. She found the vein but said she was in scar tissue and she may need to use the other arm from now on. This was on my "good" arm. The one that I never get IV's in that has a vein that's easy to find.

When she got the vein, the blood was taking forever to fill the tube. It literally took 15 minutes or so and she couldn't even get enough to fill the third vial. I'm not sure what's going on, but I'm slightly concerned. Has anyone ever heard of such a thing?

I know the most common reason for this is dehydration, but I have been drinking a tremendous amount lately! Are there any other likely causes? 

My electrolytes ended up being fine and my magnesium level was normal which is both good and bad. I know blood-level magnesium tests are not very accurate, but the RBC magnesium is supposed to have some value. This means that it's possible that the twitching I'm having is not due to a magnesium deficiency, but rather a neurological symptom of one of the infections. That would explain why I get some improvement but not full improvement when taking high doses of magnesium supplementation.

Saturday, June 16, 2012

IV Vitamins and More Anxiety

Whenever I get an IV of vitamins, I can literally smell the B vitamins from across the room. The smell of it is extremely strong. Within seconds of the concoction hitting my vein, I can taste it in my mouth. The taste usually goes away in a few minutes. Since my last IV, I have still been able to taste the B vitamins in my mouth and smell it on my hands which is kind of weird. I am not sure what that is.

After the IV, I tried to go running again. I didn't make it very far. I started to get extremely dizzy and motion sick with a fast heartbeat. I rushed back home because I had an overwhelming ill feeling and a need to lie down. I took a freezing cold shower and then immediately threw up about 3 times (I hadn't eaten much luckily). I don't know if that was a symptom or from a new generic zithromax that I started yesterday. 

Usually my IV kicks in about 1.5 hours after I get it. The other day it was delayed. I had a lot of energy late at night. I could have used to go for a run but it was pitch black outside. Being pent up led to anxiety. Mainly about money.

I'm about to graduate. It should be a happy time, but all I can think about is my massive student loan debt that will go into repayment and how I'm going to find a job to pay it back along with affording Lyme treatment and regular bills. I am barely scraping by now, and my car is on it's last leg which is going to be disastrous. I'm not married, and I don't have any financial assistance from my family. Many of them are in more serious financial trouble than I am. I don't know what I'm going to do, but I need to figure out something really quickly.

Friday, June 15, 2012

Worried about Weakness and Losing Hope

Today I had another appointment with one of my doctors. I told him that I'm very worried about the weakness that's been getting worse for the last month. When Mepron got pulled this week, I thought that at least I'd have some relief. I thought maybe some of the weakness and symptoms I've been having were from side effects of Mepron. However, nothing improved when I went off Mepron like I thought it might.

The doctor offered some suggestions about a possible electrolyte imbalance with blood calcium, sodium or potassium levels. I think my levels are fine, but I get another blood test next week. I will try the suggestions, I hope they will work, but I don't feel confident that electrolytes are causing my weakness.

Something is not right. I feel it. I cannot even hold up lightweight things for short periods of time. My entire body is exhausted and it doesn't improve with sleep. Extreme fatigue is common for me, but this is different. It's the kind of exhaustion that I am having extreme difficulty pushing through.

Lately I am having a ton of trances, even off Mepron. I'm not concentrating on what I'm doing. I have to sit down all the time from dizziness and exhaustion. I am normally a highly active person. I don't think this is a herx. It's lasting too long and it's getting worse each day. I also started having a lot of muscle pain, aching and cramping this week. It's in my feet, legs, arms, everywhere. It's not from over doing it, and I have already been taking magnesium in high doses. It's not helping. This is along with all my other symptoms and pain that have been daily occurrences for the past 10 months.

If any readers have any suggestions for what I should do, I look forward to hearing them. I already do high dose glutathione IV's with vitamins and they are not working as well as they normally do anymore.

I went to a presentation from another LLMD (not mine) the other day. One of the questions I asked was what a patient should do if they have a positive Lyme test with no other health conditions and have already taken many months of herbs and different combination antibiotic regimens with no improvement. He went on to discuss diet changes...........I've done that too. I guess nobody knows the answer.

I was totally against using IV antibiotics, but I'm starting to think that maybe I should try them. I don't know how much longer I can sit around knowing that I'm getting worse and never seeing any improvement.

I'm really getting scared. I don't think that people understand how weak I feel lately. Acquaintances and family members all think I'm exaggerating or they just zone out and ignore everything I say. Nobody takes me seriously. They seem to forget that I'm someone who avoids doctors. I don't even go for broken bones! I don't want to be sick. I don't want to go to doctors several times a week. I am completely losing hope. If I'm not going to see any improvement, what's the point of trying to treat it at all?

Wednesday, June 13, 2012

Mepron Frustration

Well, this week I don't have great news. One of my liver enzymes (bilirubin) is elevated so I have to stop Mepron again. This time I made it 7 weeks. My LLMD says that I will probably only need to stop for about a week. I have to get the bilirubin level down by 25% which will be kind of difficult since this enzyme has always been flagged as high for me even while off all treatment before I even knew I had Lyme or co-infections.

Upon hearing this news, I'm getting kind of frustrated and I feel like why go back on Mepron at all? I'm probably not going to make it long enough to wipe out the infection anyway.

In this week that I'm off from Mepron, all of the new red blood cells that are forming have the potential to become infected at the beginning of their life cycle. Therefore, the protozoa will live on inside the new red blood cells until the end of their life cycle which is typically 120 days.

My theory is that I need to have continuous babesia treatment whether it is Mepron, Malarone or an herb for at least 120 days so that all of the infected red blood cells will have lived their life cycles and any new ones will be protected from infection.

My goal is to use Mepron for the least amount of time possible. I feel that it is a toxic medication and I don't want to keep using it. If I'm going off, I want to be off for good. The starting and stopping is just prolonging the toxicity of using the medication in my opinion.

I am not feeling well. I have been very weak and ill feeling for a long time. I got a glutathione IV this week and I didn't feel much better (that's unusual for me). Last night I had a really strange pounding heartbeat. My joints have also been very painful and my rib cage hurts like broken bones. The exhaustion has not let up yet. My muscles are very painful and sore. Even though I'm tired, I wake up early in the morning. I can't sleep most of the time, and I'm completely exhausted. I was hoping that going off Mepron would give me some temporary relief at least. We'll see.............

My frustration is leading to more OCD. I am so sick of not being able to go for my daily hikes, play music, and concentrate enough to complete tasks for school and work. So even though I feel terrible today, I am going to go running. It will probably take me 10x longer than usual, but it's one thing I'm not giving up.

Sunday, June 10, 2012

Air Hunger

Well the past few days I think I'm starting to experience air hunger. I don't know why it would start now..........I'm on about week 7 of Mepron, for the 2nd time. It's a very strange and scary feeling for me. It feels like the air is really thick. Like I can't breathe it in.

I have always gotten a similar feeling when sitting in a heated car. I can't breathe. I have to take huge breaths and they aren't satisfying. I don't know what to do. I am very anxious about this. It's annoying and it's making it very hard to fall asleep.

Saturday, June 9, 2012

Jaundice and Hemolytic Anemia

A few days ago I was told by a doctor that I was jaundiced. I didn't notice it, but apparently my eyes were yellow. Now I'm not sure what to do. I think that my doctor is going to pull the meds again. He is very concerned about my liver whenever any of my enzymes go up, but I have a different opinion of what's raising my liver enzymes. I don't think it's the meds, I think it's the infections.

I have never been told that I had any liver issues for my entire life. I eat extremely healthily, I NEVER drink and I don't use tylenol products. I have never taken any meds prior to Lyme except short courses of amoxicillin for childhood ear infections. Then last September after I got my 105 fever (shortly after a tick bite) I went to a family doctor. My blood work for numerous conditions all came back normal. All except for an increased bilirubin level. Bilirubin is the enzyme responsible for jaundice. The family doctor said it's a harmless genetic condition (Gilbert's) and not to do anything about it. I had my suspicions.........neither of my parents have Gilbert's syndrome.

My bilirubin levels have fluctuated over the past several months. They go between rare instances where I get a  normal level of 0.8 to the extremely common 1.5-3.1 range (abnormal).

A few months ago, my ALT and AST were high so I had to go off all meds for almost a month. Despite staying off everything (including supplements and herbs) my ALT and AST did not drastically drop. At one point, they even raised back up on their own. Then I started meds again slowly beginning with doxycycline and my ALT and AST went down to normal very quickly. This leads me to believe that my ALT/AST elevations were due to an infection that responds well to doxycycline. Most likely erlichia or Lyme. I believe that the bilirubin elevation is also related to an infection.

We decided to stay on a little longer. My LLMD wanted me to go off, but I really wanted to try for a little longer to see if something would improve. He agreed to let me stay on, but if things don't improve, I know he is going to stop the meds immediately.

This week my main symptom is profound exhaustion and weakness. Several days I have had to lie down in the middle of the day. I have absolutely no energy and I am on the verge of collapse. I have never felt this level of weakness before and even though I'm against stopping meds, I seriously considered stopping them myself.

I also noticed a very strong craving. I'm suddenly craving tomatoes with tons of salt which I know is linked to anemia. Upon looking into this further, I discovered that babesia (an infection that my doctor believes I have) along with babesia meds can cause hemolytic anemia. Haemolytic anemia can cause jaundice. This is what I believe is happening.

So I'm not sure what I want to do now. Do I want to go off meds again and put myself at risk of having more unconscious seizures like the last time I went off along with exhaustion and severe headaches? Going off meds might help the jaundice, but then again it might not. Then I will be allowing the babesia to repopulate itself once again. I will have wasted all this time that I spent treating and in a massive herx, and I won't have even eliminated babesia.

 I have never made it past 8 weeks of babesia treatment. From what I've read, treatment should continue consistently for at least 120 days (the life cycle of a red blood cell). On the other hand, I am concerned about the weakness. It's very severe. I feel like something is very wrong right now and I don't know if I'm being too risky with my health by pushing to stay on meds.

I get worried because I don't have a lot of experience with meds and medical issues. Lyme is the only medical condition I have ever had. Therefore, I don't have tons of experience with doctors either. I can't tell if my doctor is being overly cautious or if I am not concerned enough. Is it likely for someone in their 20's to have a permanent liver consequence as a result of babesia or medications? If I'm not at risk for permanent damage, I don't think it's a good idea to stop treatment continuously.

Monday, June 4, 2012

Melatonin Doesn't Work for Me!

I have an LLMD appointment coming up and I am afraid to mention the fact that I am having trance-like states VERY often every day except immediately after my glutathione IV's. Yesterday night I tried to use melatonin to get some sleep. The twitching has been keeping me up along with stabbing joint and muscle pain.

Maybe it's just wishful thinking that I was expecting to get some sleep and wake up trance-free the next day. I feel like I had to try something. I hope the trances are just exhaustion or a med side effect and not an actual seizure. If it's seizures, they are very often and getting out of control.

Last night I was so exhausted that at about 6:00 p.m. I decided to take one capsule (which I semi-dissolved under my tongue first) and lie in a dark room. Several hours later, I had a feeling it wasn't working like it should. The bottle said 20 minutes.

Eventually I fell asleep. Likely around 9:00 p.m. I woke up disoriented (which is not unusual for me) at midnight. I felt like it was 5:00 a.m. At this point I couldn't go back to sleep. I was up for hours and then fell asleep for about 30 minutes at 5:30 a.m. Unfortunately this was right before I had to wake up and go to work.

I am planning on trying two capsules tonight to see if it works any better. I really want to determine if the trances can be helped by sleep. I have had these trances before (back in the winter when I was on half the dose of Mepron). However, later on in the early spring when I was off mepron, I had two unconscious seizures. So I don't know what's causing it, but it appears that it starts with mepron use and worsens when I'm off all meds.

We'll see what tonight brings, but if it doesn't get better with sleep, I guess I will have to discuss it more with my LLMD. Something I'm dreading..........and have been trying to hide because I don't want to be on IV's or anti-seizure meds.

Sunday, June 3, 2012

Dr. Burrascano's May 2012 Presentation

Here is a link to the video of Dr. Burrascano's presentation on diagnosing and treating Lyme disease. This presentation took place in Ridgefield, CT on May 22nd, 2012.

I personally have a lot of respect for Dr. Burrascano. If I was able to choose from any of the "big name" Lyme doctors, he would be my first choice (if he was still practicing).