Everything Hurts: Parts II & III

Sunday, September 27th was day one of the "Everything Hurts" pain. Literally, as you can see by the post below, everything did hurt. Well, Monday and Tuesday were rounds two and three of that same pain. 

On Monday, the pain was identical to that of Sunday. I guess I expected it to hang around for a day, maybe. But no, it decided to stay longer. Monday was full of all of the same bizarre patches of sensitivity all over my body that hurt to touch even lightly. I described below a few of the startling limitations this pain caused. Well, after I wrote and posted that, I got dressed and went out to a movie with my family. I chose a pair of dark jeans that have a bit of stretch to them, thinking they would be more comfortable than other more confining choices. I was wrong. My lower abdomen, that space just below the belly button, hurt so much that the button on my jeans created extremely painful pressure. 20 minutes into the movie, I had to unbutton my jeans to get some relief. I also took an instant release morphine, 2 Aleve, cyclobenzaprine and Lyrica to try to manage the pain while I was out. Even still, I had to get up and rub Biofreeze over my SI and hip joints so I could make it through the movie. I literally did everything I could do to manage the pain that day. Well, Monday was exactly the same except I didn't go anywhere or do anything. I stayed in bed all day, taking a very long nap in the afternoon and just resting with my eyes closed for the rest of the evening. I was vaguely aware of a few calls and messages I received that evening, but kept drifting in and out of what felt like a light coma. 

By yesterday, Tuesday, September 29, the inflammation and pain seemed to have gone down a bit. My skin still hurt to touch all over, especially in those areas like my lower abdomen, left side, SI joints, rib cage, chest, thighs, etc. By then I had also noticed how very badly my shoulders hurt, so much so that I could not wear my purse on my shoulder because the pressure was simply too much. So, I carried it in my hand instead. But yesterday, while the sensitivity of my skin had decreased a bit-as evidenced by the fact that I could fold my arms and let them rest against my body again-this deep muscle pain in my neck, shoulders, and upper back became incredibly intense. It felt like I slept in a strange position so that moving my head from side to side hurt pretty badly. And when I went to lie to down to nap at 2pm and then again at 6pm, getting into a comfortable position was nearly impossible. Add to the fact that my entire body felt badly bruised, my muscles ached as I attempted to settle into any position in bed. It was awful. Every time I lifted myself out of bed or lowered myself down into it, I actually cringed and said ouch out loud. It was bad.

Again, I spent the entire day napping and resting in bed. The only differences between yesterday and Monday was that yesterday I had to leave the house for an appointment with my psychologist and I had to take a pain pill to get enough relief to go to sleep. Actually, the latter set yesterday apart from most days. I very rarely need an instant release pain pill to manage pain at home or in bed. Usually just resting or using ice packs is enough. But last night I just couldn't stand it anymore. The pain in my neck, shoulders and back was so intense that I knew I wouldn't be able to sleep. It almost felt like my bones were settling or rubbing against each other when I got into bed. Just like the pain that made my whole body hurt to touch, I was confused by the source and intensity of this deep muscle pain. 

Everything Hurts

I went out last night for the first time in a very long time. I also wore very high heels for the first time in 2009. It was all for my friend's bachelorette party and it was all worth the pain I'm in today. I fully expected to be paying for wearing heels all night. By the end of the night, I was in excruciating pain. I couldn't bear to take one more step in those shoes, beautiful as they were. My SI joints and lower back muscles were aching but the worst of the pain was in my feet. Again, this was all expected. 

A quick side note here. I just want to say how wonderful it felt to get all dressed up and go out. It's been a long time since I've been willing or able to do that. I put on these beautiful purple satin, 1940s style heels and my Marilyn Monroe red lipstick. I felt like myself again. I used to get dressed up almost every day. But a lot of that had to go when I started getting more and more sick. Anyway, it was nice to know I can still feel like that.

When I woke up this morning (and by morning, I mean 1:15 pm), I was about 10 minutes away from my pills. I needed to eat a quick breakfast before I could take my morphine and Lyrica. I knew those first few steps after I got out of bed were going to be rough. I was right, they were. However, that was not the worst of the pain. I was very surprised to find that my whole entire body hurts to touch. There are parts that are more sensitive than others like my thighs, rib cage, left side of my lower back and the skin over my SI joints. The pain is so intense that I cannot touch any part of my body even lightly. I cannot put my hands on my hips or gesture with my hands and let them fall to my lap. I cannot tie the belt on my robe because the slightest pressure is too painful. I cannot fold my arms and let them rest again my body. I have to carefully get into bed because the pressure of the pillows against my skin is too much. I have had days like this before, but not quite to this degree. I didn't do anything to provoke it that I know of. I didn't drink last night or eat anything unusual. I did push myself physically but not in a way that would cause this. I am assuming this is a Herx reaction from my new antibiotic Cedax. I just started it less than a week ago but have not had a typical Herx reaction. I have actually felt ok, with the exception of increased joint pain and a relentless headache. I can only assume that this is the result of inflammation from a Herx reaction. It is quite intense. The inflammation and sensitivity to touch started a day or so ago. I noticed last night at dinner that I couldn't gesture with my hands and let them fall to my lap without pain. During the worst months of this illness and leading up to my gallbladder surgery, I remember this kind of inflammation. It always affects my legs this way. My thighs are sensitive to touch, not the back of my legs but my lap. It's weird. Today, however, the pain is everywhere and far more intense. I'm going to take some Aleve and see if it helps. But, wow, this is bad!

IV Rocephin Therapy

This week I started IV therapy with Rocephin. I have gone through this treatment before, on and off for a few months, about a year ago. I have not tried it since my gallbladder surgery in August of 2008. I was told from the beginning that Rocephin can cause or exacerbate gallbladder problems and that many people eventually have to have their gallbladders removed as a result. I was one of those people. I do think that Rocephin was a big part in speeding up that process but I had had problems with my gallbladder for years before I took it. Another fact that complicates matters is that I also took the birth control pill Yaz for a few years before the surgery. There is evidence now that Yaz can cause heart attacks, strokes, deep vein thrombosis, pulmonary embolism, gallbladder disease or even death. Click on the following link for more information.

http://www.usrecallnews.com/2009/09/fda-sends-warning-letter-to-makers-of-yaz-yasmin.html

If you took Yaz and experienced any health problems, please file a report with the FDA by following the link below. There are many law firms around the country that are preparing and filing lawsuits on behalf of the people who may have been harmed by taking Yaz and a few other newer hormonal contraceptives. I do not yet feel comfortable participating in any lawsuits. But I do think it is important to file a report with the FDA. At the very least, I am a part of the process of discovering the extent to which this drug may have caused harm.

https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm

Back to Rocephin. There are many, many different Lyme protocols out there. One of the most trusted and widely used is the Burrascano protocol (http://www.ilads.org/files/burrascano_0905.pdf). Each protocol dictates different maximum dosages of each Lyme drug. Here is an excerpt from the Burrascano protocol for the use of Rocephin (Ceftriaxone):

"Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams 

slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only 

more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential 

complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis. Hence a 

more effective, safer regimen that by virtue of the treatment breaks, is less costly and affords the patient a 

more acceptable lifestyle. IV access with a heparin lock becomes possible (and preferred)."

As much as I would love to participate in treatment following these guidelines, I simply do not have the means to at this time. This is a rather aggressive protocol by most standards and not one that my current doctor is willing to order. I will be seeing a few more specialists soon, starting with Dr. David Reifsnyder in Lakeland, Florida, and hopefully one of them will be able to carry out aggressive treatment with IV antibiotics. 

Last week I did restart treatment with IV Rocephin (ceftriaxone). Last time I took this drug, I had very strong Herx reactions. I was usually ok the day the IV was administered but by the next day I would experience an exacerbation of tachycardia, joint pain, muscle pain, fatigue, lightheadedness (from lowered blood pressure), fever and headache. Even though I was started at a considerably lower dose than is called for in the excerpt above, only 1 gram a day for 2 days a week, I had strong Herx reactions. My doctor considers this the maximum dose and will not go any higher. In fact, in order to reduce the severity of the Herx reactions I was having, he reduced the dose to 1/2 a gram at a time 2 times per week. While the reactions were not as strong at that dose, they were still hard to tolerate. At the time I was working and trying to participate in a full social and personal life. Now, however, I am not working or going to school or socializing as much so it is not as important to keep me functioning. I believe that now is the time for a much more aggressive approach because I am willing and able to tolerate stronger Herx reactions. However, my current doctor still uses caution when prescribing IV Rocephin. At my follow up appointment 2 weeks ago, he ordered IV Rocephin as follows:

• 1/2 g once per week for 2 weeks
  
• 1/2 g twice per week for 2 weeks
  
• 1 g twice per week for 2-4 weeks
  

As you can see, he is taking a gentle and gradual approach. He is also combing some naturopathic elements with the medications. He started me on Saventaro, an herbal supplement widely used to treat Lyme for its non-pharmaceutical antibiotic qualities and anti-inflammatory properties. Saventaro is a brand name for the supplement Cat's Claw and is discussed in the book The Top 10 Lyme Disease Treatments (You can read information about and purchase the book at http://www.lymebook.com/top10book). I am also taking the supplement Nattokinase, a supplement considered a breakthrough in Lyme treatment because it is an enzyme that dissolves the biofilms that protect the bacteria in the cyst form. The research for Nattokinase is still pretty new and information can be hard to find. I like this article I found on another Lyme blog that discusses the topic:

http://www.lymediseaseresource.com/wordpress/new-hope-for-most-chronic-cases-of-lyme-disease-part-one/

Until I can see the new specialist and figure out my next move, I am happy to following the protocol I discussed in the above paragraph. Although my current doctor, Kirti Kalidas, believes in a gentle and integrative approach, he agrees that it is time to participate in a more aggressive protocol. My latest labs and some new and amplified neurological symptoms seem to be leaving us no choice in the matter. That is really fine by me. The whole point of taking 6 months off work was to rest and be aggressive. In order to do that, Dr. Kalidas is encouraging me to get a second (or third, remember Dr. Robbins?!) opinion and find a doctor who will administer higher doses of antibiotics. In the meantime, I am following the protocol below:

1.) 1g IV Rocephin twice per week-I chose to start at this dose rather than the more gradual approach he intended for me. I just didn't see the point in going slow anymore.

2.) 1 Saventaro in the morning

3.) Nattokinase 1 in the morning and 1 at bedtime-Take on an empty stomach and increase to 2 in the morning and 2 at night after 1 week.

The first dose of Rocephin-1 gram on Wednesday, September 16th-hit me pretty hard by the next day. I spent all of Thursday in bed too exhausted, weak, and lightheaded to get up. I remarked that even with all that, the Herx reaction seemed far less severe than last time I took Rocephin. When I say I could not get up, I mean that I literally could not get or stay out of bed. The lightheadedness was so intense that it made it nearly impossible. I wish I had a way to check my blood pressure at home because I think a reading on Thursday would have shown that it was very, very low. The day before, in the IV suite just before I got Rocephin, my blood pressure was 99/60. That is low but not dangerously so. I have been taking Beta-Blockers for a few years now to control tachycardia and they lowered my already low blood pressure significantly. I also recently started Paxil, an SSRI antidepressant and I wonder if it is responsible for my latest, all time low reading, of 96/56! Now, that is low even for me! I replaced Wellbutrin with Paxil and have been feeling significantly less anxious and depressed. So I spent all day Thursday in bed unable to get up. Later that night I had a fever that started at 99.3 and went all the way up to 100.1. Now, fevers are very common in Lyme disease and are very often a part of initiating or increasing treatment. I always get a fever during a Herx reaction, but not usually quite that high. I did notice that 2 big things were missing from this Herx reaction, the pain and tachycardia! In fact, tachycardia is usually one of the biggest components of a Herx reaction for me. I usually have to check my heart rate several times a day and wonder if it will get so high that I will have to go to urgent care again. This time, however, my heart rate stayed in the 70s and 80s. That came as quite a shock. By Friday morning, I had some of my energy back and drove myself across town for another gram of Rocephin. This time, the Herx reaction started later the same day with exhaustion, fever, weakness and a bad headache. The pain I did not report on Thursday, I discovered, was a reflection on the fact that I stayed in bed al day. I did not get up even to shower, only for the occasional glass of water. If I had, I would have found out that after only a few minutes on my feet, the pain in my SI joints and the surrounding tissues was so intense that I needed my ice packs immediately. Because I knew how rough Thursday was and Friday was not going too well either, I was sure I would need to prepare for Saturday to be rough. So far, however, it's not been bad at all! I was ready for such lightheadedness that I would be unable to get up and for overwhelming fatigue and pain. Actually, all that is really happening is I have a slight fever and headache. Since last night, my fever has hung around at 99.3 but hasn't spiked. In fact, I feel well enough to sit here and type for over an hour. I even got up and played guitar and sang for a while. That is something that I can only do on days when I've got the energy and inspiration to play. It is always a good sign when I play guitar and sing. All in all, today has not been half as bad as I expected. I slept alright and got up at 9:15 in the actual morning! As someone who has been fighting the urge to stay up all night and sleep all day for years and years, going to sleep with half as much xanax by 10:30pm and waking up in the 9 o'clock hour is a big deal. I was expecting to have to pack a lunch box to keep near my bed in case I couldn't get up. But that won't be necessary. I even feel well enough to get up and take a nice long shower. Fevers always make me feel a little icky so I'm looking forward to that shower. I really am surprised that today is an ok day. I was bracing myself for a rather strong Herx reaction. 

But no matter how strong a Herx reaction may be for me these days, it is still amazing that I can rest whenever I need to. I have access to everything I need, food, water, ice packs, my bed, all the time. Blood sugar, fatigue, and pain are all manageable from home. And, I don't have to wonder whether or not the brain fog, difficulty concentrating and reading, or the haze caused by pain pills is going to interfere with work projects or dealing with customers. None of that matters. I just get to be. It is pretty amazing and I feel very, very grateful for it.

On Hope

I have a particular perspective on hope that may not go over well with everyone. I use it sparingly to avoid disappointment. I simply cannot get my hopes up and have them dashed. Time after time, I've set my sights on some kind of progress and have had the rug pulled out from under me. It's not realistic anymore. That's why I say I have expectations, not hope. I try to be logical about it because it hurts too much to be let down. But, I've been at this for a while and have seen my share of disappointment. I didn't start out this way. At first, I was very hopeful and just excited to finally have a diagnosis. Now I feel like I have to be realistic. It took time to get here. It's not for everyone, I know. But, now I can be completely compliant with very, very complicated treatment protocols without being hopeful. That isn't something everyone can do. Compliance with treatment is key and some people simply cannot do it without hope. I respect other people's perspectives and needs when it comes to illness. Some people do very well with hope. I do not.