no more antibiotics

been off antibiotics for aweek now. i feel like i did like 9 months after i think i got sick. doc thinks i still feel bad because antibiotics are like poisons. if you didnt know my illness began a steady incline about 2 years ago and i started treatment in february.

i felt crappy tonight but i'mpretty functional besides the post traumatic stress from the whole thing and occasional crappiness (every other day to every day). and i just started jogging around my small block. my goal is by tuesday to be able to run around comfortably once. and next week move to twice around.

any advice? i'm telling my doc tomorrow that i still feelcrappy. i def wouldnt be able to work. but if what he is tellingme is right then i'm defintely on my way.

depersonalization and derealization

anyone get this? it seems like i've been in it for a couple of weeks now. and i'm slowly out of it. i dunno really. i cant remember.

anyways, its like the world is flat, i have this thick cloud around my head and i can only see in a tunnel vision. i used to love watching things like the sunset but it seems i cant see it. when i lose stuff i feel like i cant see things to find them. like my peripheral vision is shot.

also i feel like my senses have decreased drastically. touch for example. its all slowly coming back so i'm feeling more optimistic. there is a light at the end of the tunnel!

Climate Change Ticks Ever Closer

On the Leslie St. spit, signs of global warming are being picked right from the feathers of migratory birds. And the ticks now spreading north carry with them the spectre of Lyme disease
Sep 01, 2007 04:30 AM
Hannah Hoag
Special to the Star

At the foot of Leslie St., a spit of land fans out into Lake Ontario. Over the years, the man-made peninsula, built with rubble from Toronto construction sites, has grown into an urban wilderness, home to butterflies, birds, rabbits and the occasional coyote.

The cottonwoods, birches, grasslands and bugs make the park popular with migratory birds that stop in to refuel on their flights – many coming from as far away as South America.

But lurking among the feathers of these international travellers are blood-sucking stowaway ticks that can carry Lyme disease.

Every morning before dawn during the spring and fall bird migration, Dan Derbyshire, co-ordinator of the Bird Research Station in Tommy Thompson Park, organizes a small group of volunteers who track the birds winging through the region.

The station is part of the Canadian Migration Monitoring Network, a string of sites across southern Canada and the northern United States that monitor the population trends of northern breeding birds.

From March to June, in 2005 and 2006, Derbyshire and his team of volunteer birders plucked ticks from the heads of the migrating birds. Then they mailed the ticks to scientists who are trying to gain a better understanding of how birds and climate change might increase the spread of Lyme disease through Canada.

"The number of cases of Lyme disease have been fairly low in Canada, until recently," says Nicholas Ogden, an expert in tick-borne diseases at the Université de Montréal in Quebec and a researcher at the Public Health Agency of Canada.

Since the 1970s, parts of the United States have suffered an epidemic of Lyme disease, mostly within the northeastern, mid-Atlantic, and north-central states.

In the United States, approximately 20,000 new cases are reported each year. The disease – which causes fever, headaches and can spread to the heart and nervous system if untreated – is rarely reported in Canada, but ranks among the top bug-borne diseases in the United States.

Ten years ago, eastern Canada had only two known populations of Ixodes scapularis, commonly known as the eastern blacklegged tick. Today, there are 13 or 14, says Ogden.

"It's not that those two have spread out, but that there are new ones bobbling up," he says.

They tend to settle in migratory bird landfalls, resource-rich chunks of land near large bodies of water.

Point Pelee National Park is one of the better-known migratory bird landfalls in southern Ontario. Each year millions of migratory birds funnel through this small spit of land that juts into Lake Erie.

But the Leslie St. Spit, the Toronto Islands and the Toronto lakeshore are also popular resting spots for migrants.

Like Point Pelee, the region lies within the crossroads of two major migration flyways. It provides weary-winged travellers a chance to rest during their migration over the Great Lakes and stock up on energy for the next leg of their travels.

"Toronto has always been on the migration highways," says Derbyshire. "There are lots of green spaces where the birds can drop in and rest, and the creation of the spit has really added to that."

Ogden says the migratory birds may be bringing ticks into Canada after passing through the northeastern and north-central states, where they're abundant. The birds may also be carrying ticks from established Canadian populations farther north.

Other researchers have previously found blacklegged ticks on migratory birds. "We just wanted to know if it was rare or a common thing," says Ogden.

Although Ogden won't reveal details of the study until they have been published in a scientific journal, he says all the stations from western Ontario to Nova Scotia captured migratory birds with ticks on them.

"We think migratory birds are quite efficient at spreading the tick around," he says.

But once the ticks are here, will they survive?

Canada's cooler climate once offered protection from the diseases of warmer regions. But as climate change brings milder winters, scientists worry that the ticks – formerly limited by the cold – may move farther north.

"Insects are cold-blooded – air temperature determines body temperature," says Jonathan Patz, Director of the Center for Sustainability and the Global Environment at the University of Wisconsin in Madison. The warmer air temperature can make it easier for the insect to survive the Canadian winter. It can also speed up the rate at which it develops.

According to the Ministry of Natural Resources, should greenhouse gas emissions remain high, average summer temperatures in southern Ontario are expected to be 4 to 5 degrees Celsius warmer and average winter temperatures about 6 degrees Celsius warmer before the end of the century.

"All the biological processes that are going on require a certain amount of heat," says Ogden. "If it is very cold, those processes are very slow or will stop altogether."

"When people say why should we worry about a half-degree of warming, it means everything to a mosquito carrying dengue or West Nile virus. It means do you have infectious mosquitoes after 10 days or three weeks?" says Patz.

are people SERIOUSLY afraid of the West Nile and Bird Flu???

The Press of Manorville & The Moriches Sept 7, 2007

Trying to take a bite out of Lyme disease---Romaine calls for tick management

http://72.32.16.161/daily/Skins/southamptonm/navigator.asp?skin=southamptonm&BP=OK


By Bryan Finlayson

Rita Mischke, a resident of Baldwin in Nassau County Long Island, was a part-time Central Park ranger and legal secretary until she became a disabled adult.
The 58-year-old unexpectedly contracted Lyme disease from a tick that latched onto her back during the summer of 1998. Several months later, in October, she started noticing a weakness in her left side. She was dancing at her 50th birthday party when she noticed she was having trouble moving.

Doctors told her that she had multiple sclerosis, a disease that gradually destroys the nervous system. However, she says she was misdiagnosed. After going through eight doctors, she was eventually diagnosed with chronic Lyme disease, which, if left untreated, can be fatal.

Ms. Mischke was diagnosed with the disease in 2003, the same year she had to stop working and go on disability. She maintains that the disease has ruined her body.

“It has taken my life away. Because of it, I lost my job and, as you can see, I can hardly walk now,” Ms. Mischke said as her helper dog, Slate, stood beside her. “I certainly hope that I will recover enough to walk on my own. If I get there, then that will be the day I do cartwheels.”

Her story was one of many shared last Thursday afternoon, August 30, during this year’s Lyme Disease Forum, an annual event held at the Suffolk County Center in Riverhead. The event, hosted by Suffolk County Legislator Edward P. Romaine, is meant to spread awareness about the disease. About hundreds from across Long Island attended.

The disease is not obscure and affects the lives of thousands on Long Island each year, Mr. Romaine said. More than 1500 cases of Lyme disease are reported to the state Department of Health every year from our Couties alone. Long Island is seen as a hot spot for ticks carrying the disease, he said.

Meanwhile, there is little the government is doing in the way of prevention. Mr. Romaine said the county spends millions on mosquito control to prevent the West Nile virus, which affects only a handful of people per year, while no money is spent on tick control.
“I can tell you that this is a serious problem,” Mr. Romaine said.

Dr. George Ruggiero, a practicing Lyme physician based in Wading River who spoke at the event, said there is a lack of training in the medical community to detect the disease in patients. He said the disease is problematic to detect because its effects vary greatly from individual to individual. Some people show extreme fatigue, while others exhibit joint pain or trouble focusing.

“Many patients are falling trough the cracks in the medical system,” Dr. Ruggiero said, stating that undiagnosed cases may be 10 times the reported number of cases. “There are so many different symptoms. That is one of the many issues you’re dealing with out in the medical field.”

Though there are doctors who specialize in Lyme disease, a majority of doctors have little training in identifying the disease. Many doctors rely on a series of blood tests to tell if a patient contracted Lyme.

Dr. Joseph J. Burrascano, an East Hampton Lyme physician who retired from practice in 2006, said there are two tests, ELISA and the Western Blot, that doctors use to identify Lyme. Neither test is very sensitive, he said. The ELISA test “if negative, doesn’t rule out Lyme,” and the same goes for the Western Blot test, Dr. Burrascano said.

He said many Lyme patients need antibiotics to combat the illness at its early stages, within several weeks after a tick bite.

Nonetheless, many patients who need antibiotics never get them because the antibody level in blood—what both tests measure to detect Lyme—might fall just short of a pre-established benchmark.

Unfortunately, many patients don’t make it that far because they don’t meet the threshold to make that test positive,” Dr. Burrascano said. “A fair [number] can have a completely normal Western Blot and still have Lyme disease.”
There are two conflicting schools of thought in the medical community that are currently battling over procedures to recognize, and treat, Lyme disease. The Infectious Disease Society of America, currently the standard in the medical community, advocates a three-week treatment period for patients diagnosed with Lyme. That is not enough time to fully treat the disease, Dr. Ruggiero said.
“This shortsightedness for the threeweek period for treatment needs to be eliminated from the thought process,” Dr. Ruggiero said, emphasizing that antibiotic treatment can take months to years. “If it is not treated completely, it will wax and wane for years and years.”

Daniel G. Hassan, 22, of Brookhaven Hamlet, Long Island, said he contracted Lyme when he was 12 years old and was only partially treated. Now his symptoms—including mild seizures and fatigue—are reoccurring, he said. He said he takes 30 pills every day, antibiotics and seizure medications

The disease forced him to reevaluate his life, he said. “It kinda made me, I don’t know, more cautious. It [made] me cherish my brain more, to use my thinking ability as much as I possibly can,” Mr. Hassan said.

i hate writing these posts as much as i hate taking my medicine

i hate writing these posts as much as i hate taking my medicine. but both are necessary. ive been feeling better the last few days and i'm thinking it has to do with the following or just one of the following:
1) ive been on my new antibiotic for more than a week
2) my cousin and her toddler daughter stayed at our home for 4 days
3) i had my period and now its over
4) i'm happy with school and its filling my mental needs (i dont really know how to put that)

things that have been better:
1) i've been sleeping through the night going to bed earlier and waking up earlier
2) i've been handling this very hot weather rather well
3) i've been eating a little better
4) i was able to walk across the street and back today to get food

things that have been bothering me thought:
1) horrible head pain today (probably from the heat)
2) i was really weak during my period and before
3) anxiety at night
4) i get bouts of narcolepsy randomly

I want to be 21

I am very dissatisfied with my life. And rightfully so. Some would chalk it up to depression and at times I would as well. I want to live life fully. And yet I try to live life fully given my limitations. Do you ever feel like life went by and you did extraordinary things during that time but never fully lived it? Of course not. Not many people do. Or should I say they do because nearly half of all Americans have to suffer through invisible illnesses. I'm only 21 but this illness has caused me to age significantly to about 80 and back. I've lost friends for different reasons. Because I can no longer keep up any kind of social life and because I am no longer willing to be around people who judges me for my illness and the decisions I make around it. So when I want to be around people my age and actually experience what a college student should and when I'm ready for it it's not available to me. Other times, nearly 80 percent of the time I do not want to be around people my age. Few have had to deal with something like this. They cant understand why I am the way I am, even though I so desperately want to have that full of life feeling where I can go anywhere on my two feet. I've lost the last year of my life. I've lost it, even though others haven't. I can't find it and it wont return. That whole year of my life no matter how wonderful things may have been, its gone. I cannot take it back and use it to my maximum agile energetic ability full of passion and promise. Things that are "fun" in my life now, Being ABLE to notice the sunset, oh something i used to dream for every day and now all i can see is the pain in my eyes and all over my body, in my stomach and weakness, sleepy always, feel like my mind has went from IQ of 120 to 50 in just one short year. embarrassment from lack of mind. GONE its all gone. And I can't even look back on the year to remember it and remember the things that happened. Its like my life stopped for a year I was in a coma that was full of crushing pain while everyones lives continued on.

rifampin

my doc added rifampin to the mix today! i'm learning to trust him more.

i got a rash?

it started out as an itch and i rubbed it. a while later my friend noticed it and i looked at it more closely. i noticed it resembled the lyme rash but smaller and fainter. its next to this "scar". the story behind the scar is that i just noticed the scar like 3-4 years ago and never ever remember hurting myself there. i wonder if the rash is related to the scar in any way. anyways i put some pictures of it here to see what you think. its kinda hard to make it out so i put pictures to show where it looks like a bullseye...

Hands and Feet hurt

anyone else get this? and they get red almost as if my blood is pooling to them.

the last two weeks

i went to the doc and he told me to take double my meds. as a result i've had an overall increase in symptoms. i had some marital problems that did get resolved but i hurt my neck in the process. so i started going to the chiropractor at my school which is really cheap. hes done this combo therapy on my neck and slowly getting my neck and back to a place that he can start doing other stuff. its been helpful. but the last few days have been pretty bad. mentally i couldnt take the double meds i was getting confused and couldnt think straight and i still cant but it was so bad. and felt weak and ill and i still do. my hands and feet hurt alot. and this other thing i'm not sure is related whatsoever but my nipples hurt. i decided to drop any dance class and just take the 3 communication disorder classes. i wont be able to handle it at all. maybe i need to move on. its sad. the reason is i was enrolled in a 3 unit intermediate ballet class that i had last semester which i really like the teacher and she would most likely be lenient on me and stuff but i'm afraid i wont be able to catch up at all and it would be too much too fast. if only she had an easier class. but the other dance teacher seems kinda tough. any absence or late or non dress counts. and they are each 1 unit so i would have to take 3 and thats too much. with papers and stuff not worth it.

i really want a maid to come like once a month. i think it would help me a great deal. my husband and i are going to get a car for me. maybe a 98-99 jaguar xj6 or something similar. if we take good care of it in about 20 years it would be a classic. which is always good. we just have to be committed to the repairs. but yeah i need a car to go to school even if its a block away. i'm just too sick. also the doc approved me for a temporary handicapped parking thing, now if i can only find the paperwork he sent me...aye aye aye lyme brain!!!!

Brain Fog

Heth wrote: Every have those days were nothing makes sence or you forget things around you like who is that person or what am i saying?
Feel free to share your funny brain moments. We all understand here. :D


yesterday i was at the mall with my friend and we couldn't find my car. i was for sure my car was in this one area. we ended up going back in the mall to figure it out again. (since there is parking all around the mall). then my friend insisted that my car was to the left but i INSISTED that it was to the right thinking i remembered what the mall layout was. we walked my way and i ended up being TOTALLY wrong! its a good thing i was with a close friend instead of a judgmental one. lol.

actually when i have these moments i get REALLY embarrassed. like i go to a bible study and i hate the prayer time cuz i might have to pray or pray with someone. when i go to pray i forget EVERYTHING i was going to say and stumble over my words and say something like"thank you god......thank you...god....um...you know my heart...sorry i cant remember anything right now....amen."

oh and i'm in love with auto spell check on my computer. otherwise noone would understand me. lol

also. my mind feels like every 6 seconds theres like a hiccup or something where okay i'll give an example. i'm sad so i start to cry and then when the 6 second cycle is ending and the next one is starting i have to remember what was going on so i never baul or cry fully about how i'm feeling cuz i have to keep remembering what is going on. this happened last night.

or i just feel dumb for some reason or like handicapped. i upped my meds and this happened last time i upped them too. so my doc gave me the permission to lower it again if i cant handle it. so i did. and i'm feeling sane again but it still sucks.

i guess its not so funny. but sometimes i laugh at the things that i do. what else can you do right? i'd rather be happy than live in misery.

nauseous today

i feel nauseous today like i wanna gag and i dont wanna eat much. i wondered why but at least its not every other symptom i had! also yesterday i was tired all day and out of it because i woke up several times in the night due to my husband waking up several times. and i got a headache from looking on the computer too long yesterday.

doing the laundry is painful

doing the laundry is so painful! i usually dont do the laundry but i did it today and damn it hurts when i pull that cart of clothes!!!!! then i feel sick. not to mention the heat that makes it much worse! then i wonder if i can really go back to school like this. i'm so limited!

tired but i can take the heat

despite waking up at the usual time today 1200pm i'm pretty tired now at 8pm. weird. i havent been awake that long. and its great news to say that my thermostat is not at 78 degrees! thats amazing because i'm used to having it at least like 72 degrees all the time. my body couldnt take ANY heat. maybe my internal thermostat is regulating finally! lol.

pressure pain is back

the pressure pain is back where i need heat instead of ice and i need massages and desperately want to chop off whats left of my hair so i can apply the HeadOn stuff directly to my scalp. oh joy

update from last blog

so ive done alot of thinking lately. everything i knew i loved i dont enjoy right? well for one thing its only temporary because of my fatigue. and another thing every other day i change my mind about what i'm going to do with my life right now. my mind is wracking over these decisions. do i go to csun and start this new major head on? or go slowly. do i quit csun and go to a community college and take things like creative writing and maybe work? do i pursue more early education degrees? Do i take the things i like such as art and music at csun and possibly create a major? one of the main reasons i'm considering these things is because of control. i want so badly to make money so i can be in control and i need to release the control. i know if i do communication disorders i could be making a decent wage afterwards. or do i pursue just being a wife? learning how to create dishes and do scrapbooking and other things like that just staying home? which honestly is what ive been enjoying much more lately. i feel like maybe this disease has caused me to experience something that i actually love which i never thought i would. maybe my true hearts desire is to be a mother and a wife and not work. thats whats been going on lately at least. having a baby and the desire to be a mom has been popping up alot lately. taking care of my home and such. and my enjoyment comes more out of my imagination than anything else. for instance i just got back from my friends home. shes a mother and a wife and they live in a quaint house owned by her inlaws. she cant really do much with it cuz their renting and her inlaws use alot of the yard for storing equipment and cars (they are contractors) i like their house because well my friend she likes to do some gardening planting herbs and rose bushes, scrapbooking, etc all the things ive been desiring to do. and the thing i like most about their house is that if i lived there i would enjoy it merely because you can imagine so much. if you have a perfect house all brand new and decorated and you can see it with your eyes whats left to imagine or create? youll have to find something else. but there you can do things like plant a rose bush here or place a bench there etc. i dont know if any of this makes sense but it does to me. this diesease has really been a blessing in disguise. i have no hair and can do nothing more than imagine and stare at the stars or go on a short walk or feel the breeze on a warm day or lay in the grass or iron some clothes. its kinda therapeutic. and i dont want to leave it behind to return to the hussle bussle of the busy life that i used to have and everyone else has where they dont have time or care to walk in the park and think of nothing more than how beautiful the leaves in the trees look as they sway against the blue sky.

so back to school. i shared with mike that i just want to be a wife. nothing more. and that i'm torn about what to do. its not really practical yet thats what i desire. he said i could do that just be a wife. and then he suggested a few things where in the end i decided that i will continue my education of communication disorders so that one day when i'm 40 and the kids are in high school or what not i can do something or maybe there will be a day where mike will be out of work or he gets sick and i can care for him by working. so now i'm not going to school so i can finish so i can work so i can make money. and that makes me happy and content.

another thing that bothers me is i have defined myself by the things i enjoy. i never wanted to define myself as a wife and thats all or a mom and thats all. i would cringe at the thought because i want my life to have purpose. i wanted to be a server and help the poor and care for the needy etc. i liked to dance and wanted to be good at it. its hard not to think of those things. and why do i have to go take a class to become a writer or a dancer or an artist? and why do i need degrees in them? i know that came from nowhere but i think about those things only because i think well i enjoy them so i should take classes and then get a degree in them and that is the only way i can do them. i dont make any sense but it ties back to the imagination that ive been developing lately the creativity. it comes from within and i can create in my head and i can write and i can learn all those things without college and on my own even as a wife or a mom. i guess i feel i'm dependent on schooling to learn anything.

im not depressed i just need to redefine who i am and i guess i shouldnt even do that. define myself. just be. and enjoy. thats all there is to life. its weird but thats what this disease has taught me.

Steroids

just a question but has anyone ever felt better when on any steroid? i know its not good for you but last year when my symptoms were starting to debilitate my life one of my docs gave me prednisone for a week and i felt great! too bad it wont do much for me lol.

everything i knew i loved i dont enjoy

i find it so sad that i find more enjoyment in cuddling in my blanket, spending hours ironing clothes and nothing else, laying in the grass staring at a tree while listening to music and staring at the stars than anything i love. i love kids, i love dancing, i love art, etc. but when i do those things i dont have enjoyment anymore. its so sad. i dont know why this is happening to me! everything i knew i was i cant find anymore.

also i get distracted really easily now to the point where its overwhelming for me. like i have ADD or something but i was never like that.

i've been fatigued. i dont know really what to call it. my body is awake but my mind is asleep. in a dream state.

today i walked in the heat with my dog for about 1/4 mile and started feeling a little ill. i think that i'm still sick but i've managed it very well with my different supplements and strategies to fight inflamation and such. i used to push myself through it.

fuck it all!

i'm not awake

last night i had a migriane and went home early. i was kinda out of it because of the head pain migraine like thing. ugh! and i woke up with my head and sinuses hurting. i havent really woken up all day though. i ironed clothes and imported cd's to itunes. when i was sleeping i had alot of vivid dreams. sucky! and now i'm all sleepy and its torture! at least im not in alot of pain so thats good just i cant sleep but i'm defenitely not awake.

MRI

i'm not much better than last year honestly. my anxiety and stress levels are still high despite there being a bittersweet thing to it.

i called my insurance company today to see about the MRI i was supposed to get and found out that there is no preapproval needed. stupid bitch who swore to me that it was needed and it would take MONTHS to get! anyways i'm going to demand stuff now from that office.

i'm bruising alot now. i have about 8 bruises alone on my thighs and now a lump in my left arm that looks like a bruise. i'm having those hypoglycemic feelings again. i'm tired my face feels wiped out like usual and pouring water over it helps for about 30 minutes.

a few times last night my arms would fall asleep but not all the way. quite annoying!