Monday, February 25, 2013

I'm on the edge today

I am extremely angry and frustrated today for pretty much no reason. I'm on the edge of a breakdown. I absolutely hate what Lyme has done to my life. I feel like I don't even have a life anymore. My day consists of mustering up the energy to get out of bed and then sludging through the day counting the minutes until I can lie down again only to start another horrible day all over again the next morning. I've lost the ability to go running, play music, walk my dog, go for walks, go shopping, go skiing, cook, work effectively, use my hands, etc. Basically I've lost every part of myself and everything I've ever found any happiness in. The one last thing I've been holding onto was motivation. I have always persisted in treatment and continued to figure out something new to try. Now I'm losing my motivation as well.

I'm so angry! I have been on so many combinations of medications and herbs over the past 1.5 years and I continue to get weaker and go crazy psychologically. The past several weeks I've started getting to the point where I don't have any desire to do anything anymore. Everything is getting too difficult and too stressful for me.

It used to be that I'd ignore my symptoms and focus my energy on researching something new to try. Now I have no desire to research things any further. I've realized that it doesn't matter how much I research. Researching something that could work doesn't mean it will work for me. So far nothing has. I can't stand the constant disappointment. Over and over I try something new, have hope that it will work and then lose all hope when it doesn't. Sometimes this disease is so cruel. For example, when I first started Flagyl in December,  I was expecting a horrible herx. Instead, I had one of the best weeks I've ever had since I first got acutely ill in September of 2011. That good week repeated itself the following month. I thought I was on the right track! Apparently not. After the 2nd good week things went downhill fast and I haven't recovered.

I've talked to many of the top LLMD's and tried a lot of their protocols. I'm running out of supplements, herbs and abx combos to try. I don't have money to keep trying things that could work and I honestly don't feel like any one LLMD has the answers. If they did, there wouldn't be so many people sick with this.

I've never felt like this before. I'm so enraged and full of anxiety and depression. I feel like things are never going to get any better so why continue to take supplement after supplement? Why go and get IV's of glutathione? Sure they make me feel better but only for a few hours to a day at most. I like the break, but it's never permanent. Why stab myself with a B12 shot every day? To cover up depression? I don't want to live like this anymore! At this point if symptomatic help was effective for my symptoms that's what I'd be doing. Even if I knew it wasn't addressing the underlying problem.

For now I'd better go look up some natural mood enhancers to pick up at a local store today. I'm never going to make it through the week if my attitude remains like this. This is what I was worried about with B12. The shots work fantastic, but I get horrible relapses of depression and desperation when I try to skip it (like today). I don't like the feeling of being dependent on things. I want to feel okay without help.

Saturday, February 9, 2013

Dr. H's Protocol: Notes from ILADS 2012

I wasn't able to go to the ILADS conference in person this year. It took place in Boston which isn't too far from me, but I wasn't feeling up to it, and I couldn't financially afford to attend. So instead, I watched from my bedroom and took meticulous notes particularly on New York's Dr. H. protocol.

I organized my notes into a booklet similar to that of Dr. B. Please do not take this booklet as 100% accurate. It was transcribed from his 2012 ILADS presentation. I'm a Lyme patient with a M.Ed. and a research background, but I could have made some errors in the packet. I don't have medical training and I'm not suggesting people self-treat with this information. Please do not attempt any of the protocols without consulting with your LLMD and please do not copy or distribute this information. It is meant solely to help individual patients plan different treatments. 

That being said, I think that many of you may find the info in this packet of enormous benefit to use in conjunction with your LLMD when determining potential regimens.

If you would like the packet of info please contact me and I'd be happy to send you the link to the PDF file!

Monday, February 4, 2013

I was wrong about artemisinin

In my last post I wrote about how I was starting a pulse of artemisinin (400mg 3x per day) in the middle of an existing herx. At the time I was about 5 doses in and didn't notice any type of change. Well, things definitely changed by the end of the 2nd day. Herbs usually don't affect me..........until I started this one.

I didn't think things could get worse but they did. I had severe chills, flu-like aching, head pressure, exhaustion, dizziness etc. It's still sticking around and I've been off for about 24 hours now. During the time that I was taking artemisinin, I stopped taking antioxidants. In my case that consisted of CoQ10, green tea, vitamin C, NAC, ALA and B12 shots. I've read that antioxidants interfere with artemisinin's mechanism of action. That makes sense to me because other anti-malarials (like Mepron) have warnings against using CoQ10 with them. I also tried to start the pulse several days away from my glutathione IV which is another potent antioxidant.

Having not reacted strongly to herbs in the past, the herx was pretty shocking to me. I didn't expect much to happen especially since the first several doses were uneventful. I'm off ART until the 14th and I'm not looking forward to having this level of herxing again. I've had to load up on every supplement I have along with advil just to get out of bed. The past 2 weeks have been pretty severe. I haven't had this strong of a reaction to many medications.

I was hoping that I had gotten rid of babesia with Mepron last year even though I wasn't able to take it longer than 6 weeks. However, the reaction I had from artemisinin seems to suggest otherwise.....I can't take Coartem, Mepron or Malarone. Cryptolepis and sida acuta are too expensive for me right now. I'm hopeful that artemisinin will be strong enough in combination with plaquenil and bactrim ds.