Wednesday, November 30, 2011

To Thine Own Self Be True

I saw the Ophthalmologist in Boston on Monday. I was grateful to find him as he specializes in Lyme Vision problems. Might I add that 6 people in the waiting room also had Lyme. I had to sit through the rantings of the crazy lady next to me who insisted that Lyme doctors and all the patients with Lyme were "a cult." I wanted to whip out my MRI and show her my lesions. Actually I wanted to shove the MRI down her throat but instead I sat there and shook my head and bit my lip. It wouldn't have done any good to talk to this loon bin. Of course then she went on to say that she once had Lyme and took the IV antibiotics but they made her nauseous so she stopped. Nausea? Really? I would take a round of nausea any day over this. Then she went on to say that she was then diagnosed with Fibromyalgia and not lyme. Uh-huh. Good luck uninformed person-good luck to you.

 For quite a while I've had bad eye pain, blurred vision and horrible floaters. I haven't been able to drive in several weeks. The Lyme specialist suggested I go to Boston so another day off of work for my husband and a field trip.

I wasn't happy with the outcome. I feel like every time I go to the Doctors it's more bad news. After two hours of painful drops, dilated pupils, bright lights and flashes socked into my eyes, pressure measurements and photos of the back of my eyeballs...

His diagnosis was that I have retinal hemorrhages and small vessel disease. All of this is caused by still active brain lesions despite 5 weeks of IV antibiotics. He gave me the pretty pictures with hand written notes to bring back to my doctors. He also warned me that I would need months of antibiotics considering I had 4 tick illnesses. But I knew that.

I wonder how much less suffering I would have to go through had my doctors, maybe even one doctor just treated me appropriately with antibiotics or believed me when I didn't improved. I wonder if I would have brain lesions or would have lost my vision or the hundred other physical complaints I have. I wonder if I'll ever be able to run with my kids again or just take a walk with the dog or not be profoundly exhausted when I fold laundry.

To Thine Own Self Be True. I should have listened to that voice deep inside me who knew something was very wrong. I shouldn't have let doctors talk me into a diagnosis that I knew wasn't correct.  Lesson learned. To Thy Own Self Be True.

Saturday, November 12, 2011

Lyme Lasagna

Lyme Lasagna. Sounds appetizing doesn't it? My Lyme story gets longer and longer with twists and turns and many 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.

Saturday, November 5, 2011

One Week Down

I've had my IV antibiotics for a week now. All I can say is wow. My MD warned me it would get worse before it got better. She wasn't kidding. Initially the antibiotics caused awful chest pain (not new to me just worse with the meds) and very bad shortness of breath. I had some weird virbrating muscle thingy going on (think your cell phone on vibrate all the time).

I'm on day 8 of antibiotics and feeling chained to my house for a couple of reasons. The antibiotics take an hour to come to room temperature and then take an hour (or so) to infuse and I get them twice a day. Depending on my symptoms, I may have to slow it down. So if I can't breathe, it takes longer for the meds to infuse. Not to mention the bouts of chest pain that send me into a total panic which makes it hard to breathe...and well you get the picture.  Last night, oh the headache and neck pain! I can't even call it a headache. It knocked me straight into bed at 7:30 pm and left me in tears and the narcotics didn't even help.

Today was lots of fun (not really) with very bad blurred vision. My computer screen is enlarged to 200%. I'm hoping my vision will clear up as time goes on cause if not I'm screwed. I can't drive right now (be thankful America) and the exhaustion is terrible. The profound exhaustion is beyond words. I nap like an old woman.

Along with this comes the immense guilt and feeling of being a burden to my family. My husband is doing everything and he has never once complained. He's carting the kids to soccer and friends houses, grocery shopping, running errands, working full time and he hooks up my IV each morning and night. The kids have learned to disconnect me, yes even the 7 year old. And I'm completely irritable and cranky. Don't I sound like a joy?

 Don't tell me (or any sick person) to not feel guilty or burdensome. It comes with the territory especially from someone like me who's always done a million different things at once. Yes, I know-slow down, take care of yourself. Please don't tell me that either because I really don't have a choice to do anything but that right now. I need to be responsible for my own decision making and will do what I feel I can handle.

I'm also asking that you not send me your alternative therapies, articles, potions, homeopathic remedies, magnetic bracelets, or suggest high doses of Vitamin C, ginger, tumeric or garlic- because it worked for you. I know you all mean well but it's all I can do to hold myself together at this point and processing one more piece of information isn't what I need to be doing.

The last thing a sick person needs to feel is that they are inadequate in their own decision making. I've had enough decision making taken away from me lately and in the past 3 years. Trust me, I've researched Lyme inside, outside and upside down. My Lyme Specialist is on top of it. I'll get through this.

I am drinking gallons of water with lemon every day. It's helping to detox. I'm eating high protein foods and staying away from yeasts and sugars that feed Lyme. I'm resting and doing all the things I'm supposed to.

Thanks for asking.