Wednesday, April 25, 2012

Hate my New Protocol

The other day I went to my LLMD and I am starting Mepron again along with Doxy and also adding Nystatin.

I was feeling TERRIBLE on doxy alone and it was only in a low dose. I have taken Mepron before. I was very weak on it. I even got several trance-like states which were scary. I felt bad week 1 and then weeks 3-8. At the time, I went about two months before having a liver function test. My ALT, bilirubin and AST were elevated and my doctor immediately stopped Mepron and all other meds for nearly a month until they dropped to normal levels.

When I went in the other day, my liver enzymes were already elevated almost to the point they were while on Mepron. Except this time I was only on doxy! They had been going up for weeks, and now we're adding Mepron again? I don't understand the logic here. I know my liver enzymes are going to rise and then he will stop the meds again.

I feel absolutely TERRIBLE. I can barely move in the morning. It's taking tons of coffee to keep me functioning at all. My joints are killing me. My heart is beating really fast multiple times per day for no reason. My ribs hurt a lot and the exhaustion is extreme along with dizziness. I can't do this much longer.

I asked my doctor about something that I can do to help me feel functional between IV's. This week's IV of glutathione didn't even help me at all. My doctor offered no suggestions. His suggestion was to not work or do anything that I need to do. Well, that's impossible! Plus, if he wants to get paid, and I want to receive treatment, I need to work. It's not an option.

I'm pretty frustrated. How will I know when I've had enough babesia treatment? I don't have night sweats. I have weekly headaches and some other symptoms like the high fever at onset, but couldn't that have happened from something other than babesia? I don't know what to do anymore. I'm so sick and it's taking so long. I'm already 8 months in, and because of my liver and allergies, I can never get any more than a few weeks of treatment at a time.

Friday, April 20, 2012

Thinking about my Babesia Diagnosis

Lately I feel like I've been having a lot of symptoms of bartonella that have been surfacing. My LLMD has not really brought up bartonella much. He's been trying to focus on babesia first.

In the absence of severe night sweats, I've often wondered if I even have babesia so I decided to revisit the "Checklist book" by Schaller to see if I do have a reasonable number of symptoms from the Babesia Checklist.

This E-book with great checklists is available free online for download. I refer to it extremely often. Especially when I'm worried and want to see where a new symptom fits in. Click here to visit the website where you can download it for free.

Here are the symptoms that I have from the Babesia checklist: 
  • A yellow hue on hands, eyes or skin
  • Family, friends or others report you look tired or foggy
  • Slowed thinking
  • Enlarged lymph nodes
  • Trouble with concentration
  • Memory troubles (I used to have an uncanny memory)
  • An enlarged liver
  • A poor appetite
  • Shortness of breath
  • Headaches with no clear cause
  • Headaches which are hard to control and/or severe
  • Weight loss with reasonable eating and average exercise
  • Any decrease in appetite (this one alternates with extreme hunger for me)
  • Fatigue in excess of that experienced by most people in the same age range
  • Fatigue with ongoing insomnia (consider the possibility of both bartonella and babesia)
  • Night sweats (for me it's very rare and light)
  • Hot flashes in normal temperature room
  • Chills
  • Any fever in excess of 3 days
  • Spike of a fever over 100.5 after a possible tick bite (mine was 105 at onset for over a week)
  • Listlessness
  • Swelling in limbs and other parts of body
  • Lumps or other types of tissue collection with no clear cause
  • Random stabbing pains
  • A sense of imbalance
  • Bilirubin abnormality
  • An abnormally high ALT 
  • Lymphocytopenia-low lymphocytes which are a type of infection-fighting white blood cells

Wow. After writing it out, I guess my LLMD is correct in assuming that babesia is in the mix. These infections are so difficult to interpret. I feel sometimes like they are all attacking me at once.

Sometimes when I take even a low dose of antibiotic that goes after one, symptoms from the other infections quickly increase and become severe. Will I ever get any of them under control?

Wednesday, April 18, 2012

Freezing and Burning Hands

I had a new symptom emerge today. I noticed that several times during the day, the skin on the back of my hands felt like it was burning. It literally felt like when you stick your hands in an oven to baste a piece of chicken.

Being on doxy, I decided to keep reapplying sunscreen thinking I might be getting a sunburn. That does not appear to be the case. Later in the day, the skin on my hands felt like they were freezing cold.

I don't know what's going on. I just had some relief of numbness and paralysis in my hands this week and now this? I'm not sure what's causing it. Could it be a medication? A co-infection? Permanent nerve damage? As always, I'm conflicted about what I should do. Should I tell my LLMD and risk being taken off this med too? Should I just try to deal with it?

For today, the anxiety/exercise OCD has appeared to have calmed down a little. I had NO desire to go for a walk. I don't like all these new symptoms. Especially the neurological/psychological ones. I don't want everyone to think I'm crazy. I have trust issues even with my LLMD. I'm always worried if I bring something up, he's going to give up on the Lyme diagnosis and send me out to doctors who just think I'm nuts.

Spirochetes had their first meal in months today

Well, things are catching up with me today. I felt terrible from the time I got up. All day I was extremely weak and shaky. I had to get a coffee this morning just to make it through the day. It's the second coffee I've ever had in my life.

I decided to go do my liver enzyme test today. I have a feeling something might be up. I'm not feeling well and I think I'd better make sure everything is okay before the weekend comes. The doctor's office will call if something is any more abnormal than usual.

On my way to get blood drawn in the afternoon, I was so tired. I could barely drive there. My hands also started burning today. The skin felt like I was holding them inside an oven all day. I have no signs of sunburn which is what I initially thought it might be (since I'm on doxy).

On the way home from the lab, I had to pull over. I was so shaky, dizzy and exhausted. I stopped at a gas station and got an orange juice so that I could make it home safely. It's the first juice I've had in many months. The spirochetes will be feasting tonight with the 45 grams of sugar I fed them.

Tuesday, April 17, 2012

OCD and Manic Exercise

Last week I had a few days where I had extreme anxiety. I felt like I HAD to exercise excessively or something bad would happen. I literally went running for 5 miles, came home for 30 minutes and went back out to run another 3-4.

I did this for about 3 days and then had a break over the weekend where I was able to calm myself down. Today, it's back. I went running twice today. Once 5 miles, the second time 3.5. Normally, I'd be happy about this, but I'm not. Something is not right. My body feels terrible but my mind wants me to exert myself to a dangerous point.

I have had OCD-like tendencies before. Pretty much my whole life I've been obsessive about various things. I always have to have everything perfect, everything in control. The uncertainty of Lyme is really getting to me because of the lack of control.

I used to be obsessive about germs. Especially germs getting into my bed. I's really weird. I would obsessively wash my feet if they touched the floor because I didn't want the germs getting into my bed. I would also make sure that any pajamas I wore came right out of the washing machine and hadn't touched anything in between the dryer and wearing them. I obsessively showered every night to rid myself of germs.

I started to calm down some of those "rituals" over the past few months, but today they started coming back. Except this time, instead of germs, I'm obsessed with exercise. I ran twice today and I just got back. I am having extreme anxiety right now and I feel like I have to go running again!

I'm not sure what's causing this. Is it the doxycycline? A co-infection like bartonella surfacing? My liver enzymes making me crazy?

I'm so embarrassed by this whole thing. I have never brought up the OCD with my LLMD. I don't like to talk about these weird psychological type things. I don't want people to think I'm crazy. My LLMD knows about the hyperactive thing last week. I kind of downplayed it though. Maybe I should bring it up again and make sure he knows that it's not a normal type of energy. It's not improvement, it's something harmful in my opinion.

Scared about my Liver

I'm scared today. Yesterday I really overdid it with the amount of exercise (8 miles pushing a double stroller up hills in hot weather). I'm having a lot of pain on the right side of my ribs today. I'm worried about my liver and wondering if the enzymes are dangerously high.

I am supposed to get another liver function test before going back to my LLMD next week. I'm debating whether to do it tomorrow, or the next day. If I go tomorrow, the result will come back before the weekend so if it's really dangerously high the office will call and I won't be going all weekend with it like that. If I wait, I might have a better chance of the enzymes dropping lower, but if my enzymes are still high, nobody will see the result until next week.

My LLMD doesn't like me on antibiotics when my liver enzymes are elevated. I really had to do some convincing to stay on doxy or antibiotics at all. Nothing works to lower my enzymes (NAC, ALA, glutathione IV's, lemon detox, liver detox teas, milk thistle, etc.).

I've been very careful this week. I had a really bad headache the other day and I didn't take anything for it. I slept with an ice pack on my head and got a huge coffee the next morning which made it go away pretty quickly. I was worried about taking ANYTHING that could possibly raise the enzymes. The only thing I've taken this week has been 100 mg of doxy twice per day.

Monday, April 16, 2012

Severely Overdid it Today

Today I was working with some young children. A 3-year-old and a 1-year-old. Their parent had worked a night shift and needed to sleep during the day, so it was necessary for me to take the kids out of the house as much as possible.

It was a beautiful sunny day today. The temperature was about 75 degrees at it's hottest. I decided to use the huge double jogging stroller and take the kids on a walk. About a 1/2 mile in, I had the bright idea to try to walk and jog a little to the school playground which I thought was about a mile away. The kids were thrilled.

About 30 minutes later, we still hadn't reached the street to turn to the school. I was really tired, but I didn't want to disappoint the kids, so we kept going. I ended up walking and jogging over 4 miles just to get to the playground. The kids played strenuously for quite a while while I followed the 1-year-old from apparatus to apparatus to make sure he didn't fall off anything. I definitely had a hard time with several of these saucer-like things that you have to balance on to get up to the slide.

Since we were close to town, I decided maybe we should walk a different way home. I thought maybe it would be easier or shorter. Well, that was another BIG mistake. I had forgotten that this particular way of going back to the house involved climbing over extremely mountainous terrain on dirt roads.

By this time, it was the afternoon and the kids had fallen asleep in the stroller. I was wearing a black shirt and jeans because I'm on doxycycline and I can't expose my skin to the sun. Thank god I had layered on sunscreen with titanium and zinc. I am lucky that I didn't get a serious sunburn. I was absolutely DYING of heat and exhaustion. Between the two kids and the stroller, I was pushing over 100 lbs uphill 90% of the time.

Today was one of the most exhausting days I have ever experienced. My heart felt like it was going to explode. I could barely breathe. I was very frustrated with the level of pain between the heat, my joints, my chest and my muscles. I was so dizzy at times that I couldn't even see straight.

We got back to their house and I was absolutely wiped out. I wish I could have just collapsed on the couch, but instead I needed to make sure they had fresh juice, lunch, and a show to watch while I cleaned up the house and did the dishes before heading home.

I am paying for this stupidity now. My knee feels like it's going to burst. I have blisters all over my feet. I need to accept the fact that I can't do things like I used to right now. Last year, walking 10 miles a day would have been no big deal. Today I walked about 8 and it felt like it nearly killed me.

Dr. H audio on chronic Lyme

I just found a good link of Dr. H discussing chronic Lyme disease on a radio show. Click here to access it.

Saturday, April 14, 2012

Lyme for Life?

Today I got a message from another Lyme patient. This woman is frustrated beyond belief and doesn't feel like she can deal with Lyme or life in general anymore.

I can relate to this sense of despair all too well. Many times I have felt the same way. Suicide is not something that I would EVER consider. I know it's not the answer, and it only causes more pain to family and friends. However, I can easily understand how the endless days of pain and fatigue, the financial stress, and the constant anxiety and worry can get to a person.

Every day I read articles about some of the serious consequences of chronic Lyme. For instance, I recently read that many women with chronic Lyme have a very hard time conceiving children and some have children born with congenital Lyme. These children often end up with serious complications.

The other day I read an article about Lyme contributing to the development of lymphoma. Additionally, I have read countless articles which describe how Lyme has never been proven to be eradicated from the human body. In other words, even if I am able to suppress this disease, it will always be in my body waiting for an opportunity to repopulate and strike again.

I, like many Lyme patients, am trying to wrap my mind around the fact that I may never fully recover from this. I have to start realizing that Lyme might be something that I have to learn to live with, not something that I can treat and get over like an ear infection. This disease is likely something that I will have to keep in check for the rest of my life.

I was just getting started with my adult life when this disease hit me. I'm about to complete my grad school degree. After years of studying and spending all of my time trying to attain the highest possible grades, I was looking forward to relaxing, starting a new career, becoming more social, and finding someone to spend the rest of my life with. Are all of my plans down the drain now? Who wants to get involved with someone who has a chronic illness? Even worse, how many people my age will even take Lyme seriously? How long should I wait before telling a new acquaintance/boyfriend about Lyme? Should I be upfront or wait a certain amount of time?

I don't know why some people are affected so severely by Lyme and others only have minor symptoms that are easily treated. For now, I have to make the best of it. I am grateful that Lyme is something that doesn't rapidly spread and kill people quickly. At least for now, it's able to be suppressed either by antibiotics, herbs or other alternative methods.

For me, I think it's best if I use my Lyme diagnosis for some type of purpose. I feel like if I don't rationalize it as happening for a reason, then I will see it as a punishment for something I've done. So I'm going to do my best to advocate for Lyme in my area. I'm going to start to attend local support groups, hold informational meetings and Under our Skin screenings, and volunteer for local Lyme events. I'm hoping that the more I speak out about this, the more awareness will be raised in my area. Lyme is a serious issue. I NEVER would have expected this to happen to me. Now that it has, I want to make sure that other people know how bad it can get so that they don't allow themselves to progress to this stage.

More important is physician education and awareness. Even with a cut and dry case, I couldn't get adequate treatment. I progressed to a severe stage partly because doctors would not listen to me and refused to test me for Lyme. Perhaps if enough patients assert themselves and discuss their stories, physicians will be forced to change the way they diagnose and treat Lyme.

Friday, April 13, 2012

Dr. Phil on Chronic Lyme


Dr. Phil McGraw had a show on today titled "Deadly Consequences." This show featured the stories of three women suffering from chronic Lyme disease.

The first guest was Stephanie Vostry,  a 25-year-old model who was living in extreme pain from chronic Lyme. She was having seizures, one of which was caught on camera. She had resorted to using whippets (nitrous oxide) to numb her pain. She mentioned she had already spent over $40,000 on treatment and nothing had worked. She, like many Lyme patients had been accused of making things up. At one point she asked Dr. Phil, "Why would I make this up?" to which he replied that there are a lot of reasons that hypochondriacs make things up such as for attention, to escape the expectations of life or for sympathy. At this point I started to get worried. Whose side was Dr. Phil on?

Soon after this part of the conversation, Dr. Phil deferred to one of his producers who was filming Stephanie during the seizure. She verified that Stephanie could not have acted out that type of pain.

The next guest was Brook Landau, the weather forecaster who documented her decade long struggle with Lyme disease. She talked about how she went to sleep one day perfectly fine and woke up paralyzed. Her spinal taps were coming up positive, but her western blots were always negative so most doctors refused to treat her for Lyme until she found a LLMD.

Then Dr. Phil had on one of his own producers who is struggling with chronic Lyme and is on IV meds. At this point, he mentioned his feelings that he knew this woman, he knew she was not making things up, and although he did not specifically state his position, it was clear that he agreed that chronic Lyme is not a fabricated condition.

Dr. Phil had on two doctors who stated their opinions very briefly. One was representing the IDSA side of things. He mentioned that there is no evidence that long-term antibiotics are helpful for Lyme disease. Brook was given a chance to counter his statement which she did very well by stating that long-term antibiotics gave her her sight back, her hearing back, her body back etc.

The LLMD on the show also had a chance to speak. She brought up a study about monkeys and how the Lyme bacteria had persisted after antibiotics. She made it clear that she is not a "voodoo" doctor. That patients come to her having been treated under a certain guideline (the IDSA's), the guideline was not effective, and now it's her job to help the patients. She offered to treat Stephanie free of charge.

Overall, I thought the show was well-done. I think it will really be an eye opener for the general public. I know that on a daily basis, I am often met with people who dispute the fact that Lyme is a serious condition. Many people will say to me "I had Lyme, I just took 2 weeks of antibiotics."

Others conversations will go like this. "My son had Lyme really badly."
"Oh wow, how long did he have it for?"
"He had a high fever for a week before the antibiotic lowered it. Then he took it for a few more days and was fine."

This is the common misconception associated with Lyme in my area. Nobody even knows about co-infections here. The opinion of Lyme is that it's no more serious than a common cold. To locals it's something you get, take an antibiotic for, and move on from with no serious symptoms other than a rash or a fever.

It will be a great thing for the Lyme community to have a reference to a major show like Dr. Phil. As far as I know, it's one of the only national shows that has given direct coverage to chronic Lyme.

Thursday, April 12, 2012

Bad Results, but a Good Appointment

So today I had my appointment to go over my liver function and hepatitis tests. I thought that I was going to have to switch to herbs today, so I was kind of in a bad mood. Before I went to my appointment, I figured that I'd better burn off some steam so that I wouldn't be over the top frustrated at my appointment. I did a very strenuous hike up a mountain until my heart was practically jumping out of my chest. Stupid..........I know. I was just so anxious that I had to do something strenuous. Even my dog thought I was crazy.

After a 70 minute hike, I headed down to my appointment and my liver enzymes had risen a few more points. Surprisingly, my doctor decided that as long as I didn't have hepatitis, it would be okay to restart antibiotics. Except this time we were going to go much slower. I needed to stop taking everything (supplements, supportive herbs etc.) and just take a low dose of one antibiotic for the first two weeks. Then we would do another liver test and think about adding in a second one or upping the dose. No more high doses for me. No more 4 drug regimens either.

So I was much more comfortable after today's appointment. My LLMD talked to me a little about how he's very concerned about making sure that my liver stays healthy because he's seen people get very sick from liver enzyme issues. I understand that. I don't mind being cautious. I just don't want to go off everything and keep getting worse. I want to TRY as long as I'm not in life threatening danger.

A Feeling of Dread

For those of you who have to go to doctor's appointments regularly, you are probably familiar with the sickening feeling of dread that I go through the few days prior to a new test result coming back or an unexpected appointment that is likely being called to discuss bad news. It starts out with extreme anxiety. I worry about my treatment being stopped. I worry that my doctor will drop me because I'm too complicated to deal with. I worry my liver is failing. I worry that whatever treatment is suggested will be unaffordable for me. I worry, worry, worry all the time about everything. I get physically sick and nauseous every time I have to go back to any doctor.

I have been very fortunate health-wise for most of my life. I have never had any health issues prior to Lyme. I'm also fortunate, that so far, I don't have any signs of the more common deadly diseases. One of my biggest fears has always been cancer and I have a lot of admiration for the many thousands of people who are able to go through cancer treatments and still keep a positive attitude. I know I would not be able to have a positive outlook in that situation. I would like to, but I am not a naturally optimistic person and I'm sure that impedes my progress sometimes.

So today I sit worrying and counting the minutes until I have to leave for my 1.5 hour drive to my LLMD to get more bad news. I have so much anxiety that I think I may need to go exhaust myself again even though I know my heart is not doing well lately. At this point, I don't even care. Running is my only stress relief and I am very close to having an emotional breakdown from all of this stress and pressure that's been coming from trying to lower liver enzymes in a ridiculously short amount of time to meet an ultimatum.

I absolutely HATE not having control of things. I can see how people think I have a personality that might lead to an eating disorder. I feel like a failure every time something goes wrong. This definitely leads to me obsessing about things that I can control. I have already done this with food by restricting dairy, gluten and sugar. I'm not doing it to lose weight. Simply to try to do something for myself to impede the reproduction of borrelia since I'm not getting much help lately elsewhere. Since that's not working, I'm going to have to look into something else that I can control for myself. Research is one thing. I do that all the time. However, what good is doing the research when you don't have anyone to implement it or take it seriously?

Well, I'd better go running before I bring everyone else down today. Hopefully any readers of this post are not feeling like I do right now. Hopefully you all are making some progress and are headed back toward a normal and healthy life. :)

Monday, April 9, 2012

A Frustrating LLMD Appointment

A few days ago I had an appointment with my LLMD. I have been treating Babesia and Lyme for about 7 months. In the beginning, prior to meeting with my LLMD, I started taking herbs. I was highly against antibiotics. At this time, I was much less severe than I am now. I was still hiking daily with just some pain and dizziness.  Over a period of several months, I continued to decline on herbs. At my first appointment with my LLMD, he told me that my case was too severe and herbs would not be strong enough so I began antibiotics.

Every time I start antibiotics, my liver enzymes go up and I have to stop. Last month, I was off antibiotics for 3.5 out of 4 weeks. I just restarted a new protocol 3 weeks ago. I developed an allergy and needed to stop 2 out of 3 of the meds I was on.

I have been trying everything I can to get my liver enzymes down. I drink 4-6 cups of liver detox teas per day. I take N-acetyl cystene, alpha lipoic acid, glutathione IV's, milk thistle and many other liver support methods. Nothing has been able to keep my liver enzymes down reliably. 

This week, I had a liver function test, and my ALT and AST were up again. They weren't incredibly high. Still in the 60-80 range. Nevertheless, I got some shocking news from my LLMD: "I can't treat you with antibiotics."

WHAT? How does he know that the antibiotics are causing the elevations? Erlichia and other tick borne infections are also known to cause liver enzymes to raise as well as bacterial die off that is filtered through the liver.

Last month while I was off everything, my liver dropped the first week than rose back up the second week before dropping down to normal in the third week. If antibiotics were to blame than why did they raise up while I was off everything?

I was beyond frustrated with the entire situation. My LLMD wants me to go back to the lab for another liver function test as well as tests for hepatitis. Hepatitis is going to be a near impossibility for me. I have absolutely NO risk factors for hepatitis. In fact, I have no risk factors for liver issues at all. I have never even had one sip of alcohol, I don't eat an unhealthy diet and I don't use any drugs, even Tylenol!

I am EXTREMELY worried and upset by this situation. When I was last off antibiotics, my symptoms started getting really severe. I had seizures, started losing feeling in my hands, and started having severe muscle twitching. The numbness and twitching have continued. The seizures luckily have not recurred so far.

Another thing that worries me is the cost involved with herbs. I can't afford them. It's as simple as that. There is no insurance coverage for herbs. They cost a fortune. I am particularly worried about having to start cryptolepsis or artemisinin. These two are hard to find. Some of the tinctures are $40 for a few days supply.

In a few days I go back to the LLMD for the results of my tests and to discuss a new plan. I am very angry at the situation. I feel sometimes like my LLMD is being too cautious by pulling my meds every time I have minor elevations in liver enzymes. I'm worried about ever making any progress, and I'm annoyed that I can't control how my liver reacts to the diseases and medications. Once I lose ground (like I have been for many months) I never seem to regain it.