Progress

I see it's been a while since my last post. I guess it means I'm feeling better, doing more away from the computer. Summer is always a busy time. My children are home and there are lots of distractions. I'm happy to say that I feel the good days are starting to outweigh the bad, as I continue along with the same protocol with my current LLMD. I am still taking large doses of antibiotics on a daily basis, and at my last appointment, an antimalarial was added in (again). The theory in Lyme treatment suggests that remaining symptoms after long term treatment, are probably due to Babesia still hovering around. Babesia is a malaria like disease treated with different meds, which overlap with the antibiotics.

Fatique is abundant later in the day, sometimes insomnia, some new joint pain has arisen, and every few weeks a herxheimer reaction kicks in causing the cranial nerve to go full throttle, body aches, head and neck pressure which lands me in bed for a day, but seems to pass after a couple of days.

I have been doing Yoga a few times a week in addition to walking and doing some weight work. I really am a Yoga believer now. I think it's good for the human body in a myriad of ways.

I had an IV Glutathione infusion yesterday at the doctor's office. I met an older couple in the waiting room. Their 36 year old daughter was in with the doctor. It was her first appt. I've met older parents like this before in this journey. The daughter was married and her husband is leaving her because she "isn't able to do anything anymore". Her parents told me she has been sick for at least 4 years, was a teacher, now on disability, lives in the south with her dog, while they (her parents) live here, in NY. She had flown up for this appt. They asked about my situation as we waited. I explained my story, which is much like the other stories of patients they had been talking to in the waiting area. Lyme patients, who go misdiagnosed pretty much all have the same plight. Isolation, financial strain, and above all the slap in the face Chronic Lyme Disease is not recognized by the mainstream medical community, and has hence allowed them to walk around getting sicker and sicker by the day.

This family was in a state of shock, heartbroken and worried about their daughter, anxious to hear that there might be hope for her. When she came out of the inner office I saw a reflection of myself 3 years ago. She was grey, and thin. I could see she was having trouble with light sensivity, and cognitive problems as she attempted to check out, and pay. I saw her credit card slide across the counter to the receptioninst, and thought to myself...."well she is on board the train now..get ready to see that credit card balance go up in a serious way." She was shakey and worn out, and I knew what it felt like to be on the other side of that face. It's a feeling I don't think I'll ever forget.

I spoke with her for a little while, and tried to assure her that this doctor is probably the best at treating this disease, and she is in good hands. She was thankful and relieved to feel some comfort, as were her parents, desperate to help their daughter get better.

Today I am grateful, that I have come as far as I have in the treatment process. I was that young lady not long ago, hoping that there was a doctor out there who could help me. Trying to remain positive as my life was falling apart around me. In many ways, wishing my life would be over, so the rest of my family could move on.

I do feel there is hope for me now. I'm sure that I'll be treating this the rest of my life....as I have just had it too long. But that's ok. As long as I can function and have some sort of pleasure in life, I consider myself one of the lucky ones.

The other patient in the waiting room had been in treatment for 8 years, and lost all ablity to use his left arm. 30 years old and Lyme Disease has damaged so much nerve in his arm he may never be able to use it again.

The insanity of this disease just boggles the mind.

The Beach

Just before I got sick, my husband and I purchased a place at the Delaware shore. We had vacationed here for years. Our children were really young when we started coming here. We were hooked on the beautifully clean uncrowded beaches, the wholesome family environment and the warm water of the Atlantic Ocean. I have been riding the waves here for a long time. Owning a place at the beach was a dream come true for us. We saw ourselves retiring here.

Now I don't know. We may not be able to keep our place at the beach. Without my salary we may lose it. But I try not to think about that too much right now.

My trusty dog Daphne and I arrived here a week ago. The beach has always been a place of solace for me. I love to watch the waves ebb and flow. I feel like I am part of nature here. The way the ocean cleans itself, takes care of itself. The dolphins go by looking for fish, and birds dive bomb from the sky, straight down into the water to claim their dinner. The gulls walk close to me when I am sitting on the sand. Of course, they too look for a snack or their dinner, but it amazes me that they will come within 1 foot of me and not be afraid. I love the feeling of the sand under my feet and the warmth of the sun on my face. I love to watch the surfers and the children creating sand castles. I love the salt water and riding the waves in the ocean. I feel a sense of renewal here. I am still sick, but I feel more a part of life here. Perhaps I should have always lived here; maybe this is where I have always belonged. Maybe I wouldn't have gotten sick had I lived here.

I've told my family that if anything should happen to me, I want my ashes to be sprinkled at one of my favorite places on the beach here. This is where I want to be. Near the ocean, near the dolphins and birds....close to nature and not afraid.

For now, I am sticking to my same treatment protocol. I drive to a hospital once a week to have my IV Glutathione infusion. I keep taking all the drugs hoping with each passing day, I get one day closer to the last day. I still have good days and bad days.....some mornings are better than afternoons....some evenings better than the daytime. There is no rhyme, reason or predictability to my days.

Right now the one constant, is that the ocean is there everyday. I am still taking it one day at a time, never knowing what tomorrow will bring.

So They Say It's Your Birthday

So this nightmare started when I was 52. Today I am 55, and as my sister reminded me, just 5 years away from that coveted senior citizen discount. Many days I feel 65.

Am I better? Yes, I guess I am...much more higher functioning than the past three birthdays. My doctor ordered IV Glutathione which is used for Parkinson's patients to clear toxins. They say the people with Parkinson's feel an almost immediate decrease in symptoms....less brain fog, better muscle and nerve function. For me it really seems to have helped clear the neurotoxins from my system, including my constant Nemesis, my left cranial nerve. I was hesitant to start doing Glutathione, as it's one more thing I am putting in my body.

I am a Chronic Lyme Disease Patient. Here is what I currently take everyday in order to be able to function, including typing this blog.

Doryx (Time Released Doxycycline) 300mg/day
Clarimycin (Biaxin) 1000mg/day
IV Glutathione 2 grams/push 1x a week
Nystatin - 6 pills a day
Estradiol
Prometrim
Magnesium 500mg/day
VSL#3 Probiotic 2x/day
Theralac Probiotic 2x/day
S. Boulardi Probiotic 2x/day
CoQ10 2x/day
B12 Shots 2x week
B6 1x/day
Lunesta as needed for sleep
Advil and Tylenol for pain
Vicoprofen as needed for pain
Daily Multivitamin packet (5 pills)

It's a heavy load and alot to remember to take; much of it has to be spaced out around the antibiotics. This is a pretty typical regimen for someone like me. Before getting sick I took a vitamin and maybe an Advil from time to time. This has taken some getting used to.

So today is a beautiful day. I share my birthday with Earth Day and have to wonder about the huge contradiction in all of that. But I am grateful I can go outside for a walk, and enjoy the sunshine and fresh air and go to dinner with my family. Last year, I spent my birthday in bed.

Easter

The Biaxin and Doryx combo must be working. I have had 3 really good days, and today seems as if I might be good as well. If you read this blog, you know I tend to keep track of how many calendar holidays I have felt so sick, I couldn't and didn't even want to think about it.

Holidays have become just another day to get through, trying to push through the symptoms so my family can have their holidays. Most times I just can't wait until it's time to go to bed so I can shut my eyes, and just forget about it until the next morning when I wake up to the symptoms all over again.

This has been a life changing experience for me. I hope I am getting better, and can stay better. I have relapsed before, and know the incidence of another relapse is very high once antibiotics are removed from the equation.

But today is another beautiful sunny day here in the northeast. I will, as I have always done in these last 3 years, take each day as it comes, have no expectations, accept disappointment and try to do what I can do today.

Happy Easter. Happy Spring.

The Herx, Hopelessness and Ben Stiller

I feel horrible today. It started 2 days ago....the herx from the change in meds. I feel like I have the flu......times 10. Everything aches, pressure in my head, dizzy; all I want to do is lie down. It's after 3PM and I am just really getting up for the day. My back feels like I went 10 rounds in a boxing ring.

I look at myself in the mirror and I see the age and the illness today. On days like this I can't go out, and I would never let anyone come over. Would anyone let people come over when they felt like they had the flu?

These are they days when I feel like it's hopeless and I feel like God has abandoned people who are sick like me with this disease; cast us off like lepers, left to figure it out on our own.

I saw Ben Stiller on Letterman the other night. He has Lyme Disease, and actually he doesn't look so good. Older. Sadly, in the Lyme World when a celebrity or famous person is diagnosed with Lyme, it's almost a celebration. Maybe THIS time the medical establishment will listen.

Sell It On Ebay

Times are getting tougher here. I definitely thought I would be back to work by now, but sadly it isn't so. If we thought things were rough last year financially, this year gives "rough" a whole new meaning.

I started to sell my photography equipment on Ebay. I have no choice. It's been sitting unused, which isn't good for the electronics. I am now completely positive that my energy level will never be high enough to allow me to use a full studio of equipment again. So it's for sale on Ebay.

Last week we sold a lighting system and a backdrop and stands. This week we sold a reflector system and I have another backdrop and stand set for sale. My husband has packaged everything up as the payments come through on Paypal. Systematically, every few days I have dropped off box after box filled with my past life at the UPS shipping center and watched it slide across the metal table and be put on the stack of other outgoing boxes. Boxes with pieces of my life to be shipped off to some stranger far away, who will never know what these items meant to me and my life.....and how the loss of them represents the bigger loss Lyme Disease has brought to my life.

I guess it's time to say goodbye. It saddens me, however. What I used to be able to do in a day, now takes a week sometimes. I have reached a level of acceptance although I have fought it tooth and nail. I think half the battle with any disease is accepting the hand you have been dealt without ever giving up. I am trying.

But now the important thing is putting some money from these ebay sales in our bank account and paying bills. At least I feel I am doing my share that way, by cashing in on my equipment.

After selling the rest of my equipment I am not sure what I could sell. My jewelry, furniture? Certainly no one would want my blood.

The New Protocol

Last Tuesday's LLMD visit proved interesting. I knew it was coming. I suffer with this Cranial Nerve Pain and Migraine headache situation continually. The PA told me it can no longer be danced around and has to be addressed head on. Head on to me speaks clearly of excruiating pain as the bacteria is killed off and the neurotoxins flare. She is talking 5 months of double intracellular antibiotic treatment. In the almost 3 years of this nightmare, I have come to know that 5 months really means more like 8.

My new Protocol includes:

Factive 5 days on/off
Minocycline 50 mg every other day
Valium as needed
Vicobrofen (a pain killer) as neeeded
Xanax as needed
Nystain
Diflucan
My usual slew of vitamins, supplements and probiotics I take each day.

So this reads to me like a long time in the hole. I am adjusting my mindset, knowing that it won't be pleasant but probably necessary to dig out whatever form of Lyme bacteria has colonized in my left cranial nerve. My worst fear is that if left untreated it will take my sight.

I pray that after 3 years of blasting my body and organs with antibiotics it will be able to go this round. I hope this is the last round but sadly based on what I know, this is going to be a life long battle for me. I still see my final days confined to a wheel chair, racked with pain.

And so it goes. The nightmare of Lyme Disease. Spring is coming and so are the ticks. It saddens me to know that we still don't know anymore about this disease than we did 3 years ago, and that more and more people will be bitten this spring, summer and fall. More children will be forced out of school, more people will be unable to work, more people will lose all they worked for to a disease that our nation refuses to understand. It's under these circumstances, for the third year, I gather my bravery, my hope faith, and desire to be well and face this new, challenging treatment.

Wish me luck.

Cranial Nerve Pain, The Icepick And The Headache

It usually starts as a flutter in my left temple. Then I can feel the endings of my left Cranial Nerve start to expand, and along with that comes the steady feeling of increased pain. Then there is the icepick. Like a deliberate walloping blow to my left temple, but the icepick isn't removed. It's as though it's stuck. Pain starts to move around to the front of my forehead like someone has my head in a vice. I feel nerve pain and nerve sensations start to move down my neck and across the left side of my face. There is dizziness and light sensitivity.

I am completely debilitated until this disease decides to remove the icepick. It can take one day, or it can take 5. I can't think about anything else, I am rendered useless.

I generally start to load my self up with 3 Advil and 1 Tylenol as soon as I feel the flutter. This is a headache that won't, and in 2 and a half years has never gone away on its' own. I have to lay down. If after 2 rounds of the Advil/Tylenol combo, it hasn't started to subside, I take a Maxalt. Maxalt is a Migraine remedy that works effectively but it is a benzo and will take me off the map for at least a day. Sometimes I have to take 2 rounds of Maxalt, 4 hours apart. If that happens I am totally flattened.

When I was first diagnosed with Lyme and co infections my overall symptom list included about 35 different symptoms. Fortunately, over time ever so slowly it has dwindled down to about 8, but the one which currently plagues me the most is the Cranial Nerve pain and headaches which I describe.

This is excruciating pain, that can sometimes go on for days. It is exhausting and unrelenting once it starts.

What causes it? My LLMD says its the flare of the neurotoxin from the Lyme bacteria (in this case mainly Bartonella) as they fight back when antibiotics attack them. I believe it to be true, because these episodes are certainly worse, when an antibiotic rotation is first started.

This pain recedes as an ocean wave recedes. Pulling back over the course of another 18 hours or so. It generally happens by me sleeping them off. There is residual tenderness in my left temple and forehead that will take another 2 days to go away. I feel that the worst is over, but then there is always a chance I will feel the flutter in my temple again, at any time and the cycle will start all over again.

Unconditional Love

Daphne is my Yellow Labrador Retriever. If you know me, you know her. She is one of a kind, and I am dedicating this post to her.

Daphne has been my tireless companion, nurse and full time source of strength throughout this illness. She has not missed one day of being by my side, on both good days and bad. She is patient and kind and never asks for a thing in exchange for her loyalty and loving spirit. She has a sweet, warm bubbly personality. Even on my worst days when I thought I was surely dieing, her playful smile brought a smile to my face. I have never been alone in this fight, even when the house is empty, she is always, inevitably waiting for me each morning and ready to see me off to bed at night.

Unless you have struggled with Chronic Lyme Disease you can't know the anguish, the pain and emotional toll it takes. Daphne was diagnosed with Lyme at around age 6. She has had a few rounds of Doxycycline in her life. She knows the pain, the suffering and anguish I feel. She is one the few around me who really know.

I don't think I could have made through some of my darkest days without her. The sound of her paws on the floor, the clink of her collar, her yawns and her snoring were the familiar sounds that assured me I was never really been alone. Funny how animals instinctively know when people are sick. On the really bad days, Daphne was glued to my side, laying as close to the bed or couch as she could, her head popping up from time to time to check on me. She has been my friend when I've had no friends, my family when my family has been too busy, or scared to talk about my illness. She has been my wingman when I was alone and afraid to start a new medication, not knowing how it might effect me. I was always comforted knowing if a certain day were my last, she would stay with me until my husband came home to find me.

I love Daphne. When I started this battle she was almost 10 years old. In lab years, that's adolescence. Now she is 12 and a half. She no longer plays ball or runs for the stick. She doesn't run after squirrels or deer in our yard. She is content to watch from afar and observe as many older folks do. Her face is white with age, and she has arthritis in her legs.

I know that at her age, every day is a gift. So on this Valentine's Day, even though I have other Valentines, I feel in my heart I must celebrate Daphne in this blog.

To love an animal is a love like no other. One of the gifts of my life, was the day we chose the smallest female lab puppy of the litter. I knew she needed me, but I never realized how much I would need her.

Waiting For My Brain To Make The Switch

My fifth grade teacher had been in horribly tragic accident the year before I was in his class. He and his teenage sons were fishing off of a railroad trestle when a train came through (they were called bee-liners at the time - very fast) and killed two of his sons and took his right arm off right above the elbow. My mother was a teacher in this district so I remember hearing the play by play of the accident, seeing the pictures on the cover of the newspaper, and feeling quite scared when I found out he was to be my teacher.

By today's standards a teacher under the same circumstances would probably not be allowed back in the classroom, until much more time had passed which included years of grieving and therapy. He was man filled with frustration and anger, and rightly shouldn't have been standing at the head of a classroom of 10-11 year olds.

He struggled making the transition from right handedness to left handedness. It was hard to watch. Sometimes he wore his prosthesis, which I always called "the hook". It frightened me when he wore it and it frightened more when he didn't wear it and the stump of his arm, dangled below his sleeve. He wasn't a kind man. He was there to do a job to support what was left of his family and that was it. I almost never asked questions, but I used to watch him closely has he struggled to tie his shoes, write on the chalkboard, write with a pen or use a stapler. If I learned anything that year, it was how we take for granted the innate way our bodies function when everything is working together and nothing is damaged.

One day this teacher was having a pretty good day I guess. It was in the spring so it had been a while since his accident and the year was coming to a close. One of my braver classmates asked Mr. Lynch, what his arm felt like. I remember shuddering, wondering how Mr. Lynch would take that question. I remember him saying..."It's there, but it's not there. My brain is trying to switch." That scene stuck with me.

Recently I had a SPECT Scan of my brain. The scan showed that I have left frontal damage from Lyme Disease. The frontal lobe houses creative ability among other functions. As some of you know, prior to getting sick I owned a thriving photography business. I loved that business and nurtured it from its inception 20 years ago. It was like my third child. But it's gone now. It became imminently clear a year into Lyme Treatment that I could not longer work at it and give it the attention it rightfully deserved. I turned it over to my long colleague who had worked for me for years.

Many people ask me if I miss my business. Of course, I miss the money...for a Lyme patient that goes unsaid. But interestingly I don't miss the creative side. I don't see the visual images in my head anymore, which would lead me to pick up the camera. It's as if there is a piece of my thought process which is missing. The experts say the the brain can repair itself. My personal feeling is that the brain learns to rely on other areas for certain functions, if an area is damaged. It compensates.

So in some ways I understand what Mr. Lynch meant when he said, "It's there but it isn't there. My brain is trying to switch." I wonder what happens in the brain, and if my brain will let me see the images again. I am waiting for my brain to make the switch.

The New Year

I've gotten a couple of emails wondering why my posts have slowed down. The holidays and New Year brought lots to do. Not alot of time to think, just lots to do

I saw my LLMD a week ago Monday. She started antibiotics again, after having me off them for two weeks. I felt better off the meds, but still had lingering symptoms, so it's on again we go. The rule of thumb is that you must be 2 months symptom free before they will stop treatment. With a myriad of diseases and symptoms, getting to a symptom free zone is alot tougher than you would imagine. I think it's possibly time for me to switch to some herbals for a while. I'm going to call today and see if I can switch to something else. It's been 2 and a half years of these toxic meds running through my bloodstream. I need a longer break.

I am eternally hopeful that there truly is a way out of this disease. Sometimes I wonder. I lay in bed and my mind wanders, wondering if this is really an incurable disease, and if it is, maybe I'll just get to a certain level of wellness and that will be it. Unable to go any further. I guess that would be alright with me. On and off low doses of antibiotics for the rest of my days. Lyme Patients do live that way.

Sometimes I feel that since I was diagnosed, a timer has been set on my life. A timer of wellness. Something like, "you have 10 years of possible semi-decent health before your body succumbs and you can't be treated, so do as much as you can." I wonder if it's all that simple. There are so many things I would like to do. If the moon and the stars aligned themselves, and we had the money and I felt well enough....I would certainly do them. How does it work with people who have worked hard, whose children have flown the nest and they travel and do everything they always wanted? Is that a fairy tale? Is it possible for people to really do all they have looked forward to?

I think about people I've known who reach this point in their lives and either one of the spouses dies, or their marriage ends in divorce. Gone are the plans. I once worked with a lady who was married for 40 years. She and her husband retired and on the first day of her husband's retirement, he had a heart attack and died. She was completely devastated. They had all kinds of plans and as the days ticked down to retirement, she had all kinds of brochures on her desk of places they were going to visit. Israel, France, and I believe a cruise somewhere. She never suspected her grand plan to be altered. She was a devout Catholic. I remember she was completely shaken after her husband's death and couldn't understand why God did this to her. God, my friends is an entirely other post.

I guess it unreasonable to think life is that easy. Seems that all families have something, and we never know what is in store.

The third New Year being sick, has again, given me a chance for pause. The Christmas decorations are put away, the house is clean and uncluttered again. The distractions are gone, the kids are gone, and it's me alone again trying to figure out this disease. My husband continues to work hard as we try to stay ahead of our bills. We are losing ground, there is no question. I worry about the stress he is under. This was never part of our grand plan. Never.