Lyme Lasagna

Lyme Lasagna. Sounds appetizing doesn't it? My Lyme story gets longer and longer with twists and turns and many layers...like a lasagna. One layer of the story doesn't work without the other.

I've finished week 2 of antibiotics and had my check up with the Specialist. I cannot convey the feeling of general crappiness that I feel. The Nurse Practitioner that I see was quite pleased with my Herx symptoms-herxing means the antibiotics are working. I'm glad someone is enjoying them because in all honesty this is a horrifying process and if I didn't have a really strong support system I don't know how I would get through it.

I'm back in my angry phase. I'm wondering how 9 doctors could have decided to NOT treat me. Nine doctors-not one or two but nine. I'm wondering how after 28 different medication trials for Fibromyalgia that they didn't stop to think that Lyme could still be the culprit. They made that decision to not treat despite what was in front of them. Does anyone else find that shameful? What ever happened to "first do no harm". Their medical training teaches them to worry about the implications of long term antibiotics as harmful and to only rely on medical science for diagnosis I guess.  What ever happened to listening to the patient? And in my case I had 3 positive co-infections documented and the Bartonella is pretty definitive based on symptoms and the classic rash I recently went through. I suppose I'm faking the brain lesions too.

I don't know what kind of function I'll get back after treatment.The NP already told me I was in a for a long haul. It's hard to be positive in the middle of treatment when you see little or no improvement. I know it's only week 2 so all the other lymies out there are telling me to be patient.

Treatment sucks. I'm tied to my house. You either spend your days hooking up your lines, infusing, playing with syringes, IV flushes, alcohol swabs, dragging an IV pole through  your house, figuring out how to shower, managing spells of rage and crying, waiting for medical equipment deliveries, managing the symptoms from the die off, unhooking, more line flushing, waiting for IV nurses and dressing changes, submitting forms to insurance companies, fighting payments (or lack there-of), getting blood drawn, sleeping (or trying to sleep), or just trying to breathe. Put that on top of taking care of kids, home, cooking, everyday life-yeah you get the picture. Treatment is a full time job.

This week I'm dealing with bad headaches and neck pain, and awful chest pain and air hunger. I can't really call it shortness of breath. It's more like when you were a kid and you swam all day and then at the end of the day you tried to take a deep breath but couldn't because your lungs had had enough. It's that feeling that you can't take a deep enough breath. It's Lamaze breathing 24 hours a day. Walking to the end of the hall exhausts me.

My vision is awful with floaters, black veils, photophobia and blurriness. So now I have to see an Ophthalmologist in Boston that specializes in Lyme vision. The NP isn't hopeful that I will get my full vision back considering how long this has been brewing in my central nervous system with no treatment. Thanks so much sucky non-believing doctors. Spend a day in my shoes and see how long you survive or if you think your decision and former beliefs about Lyme were right. Oh and when you change your mind about what Lyme really is, then we'll make you wait 3 years for treatment. How does that sound?

After my initial 30 days of treatment are done, my IV dose of medication will be increased. Double dosing. O' Joy. Yep-herxing through the holidays. The NP let me know that I have to stay on antibiotics until I no longer have active symptoms and then she does pulsed therapy for how ever longer that takes. In the midst of treatment we do some repeat MRI's to see where we are. A very long haul.

I am trying to focus on that fact that I now have a NP that listens to me, that is treating me aggressively with antibiotics and who is hopeful for my future instead of the lyme naysayers. What I say to my former doctors-I'm not really sure and haven't decided. I'm not sure saying anything would help change their mind. Probably not butat the very least-they will have heard me.

Lots On My Mind

We spent a week in New Hampshire on a lovely family vacation. I knew before I left that something was wrong health wise again. I'd been feeling awful and had increased generalized pain.



My knee swelled up. Sexy isn't it.

I came home to 4 phone calls on my answering machine. Two from my primary MD and two from my Rheumatologist. My Lyme test was positive again. I immediately burst into tears. I knew it was but you get to a point with chronic lyme that you dismiss symptoms and don't believe what your body is telling you. Please God let it be anything but that.

In August of 2008 I was bit by a tick. In knew I was bit but didn't know how sick it would have made me. Within 3 days I was gravely ill and told I had Erlichiosis but that a 21 day course of Doxycycline would have me fixed up in no time. Well I improved some but by December I was deteriorating further. I had trouble walking and concentrating and couldn't type. I had word finding difficulty and a worsening headache that wouldn't go away and if I worked a night shift as an RN in the ICU, it would take me 3 days to recover. But the headache. Dear God the headache. Symptoms still vary day to day. My arms go numb making driving difficult. My muscles twitch and groan at the slighest exertion. My left eye droops. Sometimes it takes what seems forever to get through one paragraph in a book.

More bloodwork revealed that I also had Babesiosis and I would need IV antibiotics. But I had an anaphylactic reaction to the antibiotics after 5 days and then spent 10 days in the hospital being pumped full of steroids, IV fluids, narcotics. I had MRI's, lumbar punctures and had my gallbladder out.

Since that time it's been an ongoing battle. I've educated myself and despite my doctors believing I have Fibromyalgia, insisted on the Lyme test again. I see a Lyme specialist in a few weeks. Not sure if I am happy about that or just terrified. I have had 5 positive Lyme tests and 3 different tick borne illnesses. There is pain every single day and I walk with a cane. I have word finding difficulty. I'm on permanent disability and have a handicap parking permit. When my disability was approved the relief was great financially but I sat there and stared at the approval and thought, "Congratulations, you're disabled."

People look at me and see how much I do accomplish on a daily basis. I volunteer at my church, in my homeschool group and do a ridiculous amount of things for my family. Yet every single day putting my feet on the floor in the morning is an accomplishment. Shaving my legs is an act of God.

I push myself every single day to accomplish the most basic tasks. I have to. I worry how much damage this freaking vector has done to my body. I wonder if my strength will ever come back or if I will have a day without pain or without some weird symptom wreaking havoc with me.

Yet the CDC insists all my symptoms are in my head. They have set medical protocols that are damaging patients. There is an old Audubon saying, "When the bird and the book disagree, believe the bird." Or maybe it's the "if it quacks like a duck" saying that needs to be recognized.

I take care of myself the best I can. I rest, eat right take the homepathic treatments as well as the antibiotics. Yet somedays even this is futile. I move on because I have to. Because if I give in to this disease, it will swallow me whole. Because each time I give in or let others make a decision for me, I lose a little piece of who I am.

Imagine trying to do just your daily chores. Things like showering, washing dishes, reading the paper, folding laundry, stirring a pot of sauce. No big deal, right? Now try it wearing 50 pounds and with your dominant arm tied behind your back. Not so easy. Oh you may get it done but how tired are you? How much pain are you in? Do you feel good about the job you did? Who had to help you? How did you get that pot of sauce off the stove with one arm? How does the laundry look after folding? Oh but wait, you must also care for 3 kids, pets, clean your home, grocery shop, go to the bank, tend the garden, prepare dinner and follow a recipe. See where I'm going with this?

There is a spoon theory that I like to tell people about. While the woman who wrote it has Lupus and not Lyme disease-it's a great analogy.

I am hoping the Lyme specialist can help. I'm desperately out of spoons.

Bleeping Lyme Disease Part 2

DuraSoft 3 Litetint

I finally went in to see my doctor yesterday. As expected she repeated all my lab work, lyme testing, erlichiosis, western blot and elisa testing. I had a low grade temp yesterday that I was not aware of and have it again today.She gave me something for the muscle spasms that really doesn't help but did give me about 4 hours sleep. I also have to be seen at the Lyme clinic for further evaluation. I just put a call into her office to get the lab results which probably won't be in today but I want to restart the doxycycline since this is how it started last time. Low grade temp, aches and pains, difficulty concentrating, mental fogginess, irritable, headaches etc.
I've been doing a lot of research on Lymes lately. Please remember that the following is not medical advice but after reading countless medical studies I am convinced of a few things. These are the things that made sense to me...it may or may not be true depending on your current thinking.
The last update I see on Lyme Disease treatment from the CDC (center for disease control) is in 1994. They recommend that a Western Blot test/Elisa test only be done after a positive lyme serology should symptoms reoccur. Sadly, patients can still be lyme positive and have a negative serology test. And the western blot also misses more that 50% of positive cases. Since serology only measures the antibody response, not the antibody itself many patients with late stage seronegative lyme may still have the disease and go undetected for years.
It was also found that the Borelliosis bug that causes lyme can lodge intracellulary, morph and change and alter a persons own DNA. Kind of like a cloaking device on a submarine. Borelliosis, as it enters and exits the B lymphocytes, it draws the outer surface membrane of the lymphocyte with it. Bb can then modify its shape and forms an antibiotically protected cyst. These cysts can lay dormant for many months or years until activated by a virus or illness or whatever.
Late stage seronegative Lymes has been implicated in many autoimmune disorders such as ALS, MS, Fibromylagia, Chronic Fatigue syndrome, Alzheimers as well as heart and psychiatric disorders.
A recent Canadian Lyme Disease conference presented the case studies of CSF(cerebral spinal fluid) confirmed LD patients with CNS(central nervous system) symptoms and found that 50% had abnormal CT scans of their brains, most commonly seen were ischemic lesions caused by vasculitis.
Also of significant findings was that the recommended dosing of a three week course of antibiotics is not long enough to eradicate the borelliosis spirochete. Many patients are ending up on months of antibiotic therapy. Again, clinical studies vary in this area and there is no hard core evidence to support this theory.
Doctors need to treat their patients based on symptoms and not rely soley on serology findings.
Then the questions becomes, Is there a post lyme phase or is it all active lyme disease that needs to be treated? Based on symptoms, patients should be treated aggressively at the first sign of infection. That's the science lesson for today.