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.