Please take some time to research Lyme Disease Watch personal stories online and on youtube and SEE that this is REAL

As I continue to feel so much like my old self I can't help but think about so many of those whose lives are changed forever because of Lyme Disease. I am actually quite lucky!

Like in the film "Under Our Skin" I have watched many home video's of people who have documented their children and other loved one's battle this horrid disease. Some get better, some still struggle daily to survive and others lose their lives. There are still people yet to be diagnosed and those of whom can not afford the high cost of treatment and are forced to slowly waste away until the end comes. This breaks my heart.

The toughest part is knowing that Lyme does exist along with coinfections and yet Dr's in most states are not allowed to treat it aggressively, the fight for legilation for proper treatment (including testing) and new guidelines (especially here in Massachusetts) for correct treatment are taking too long. Most insurance companies don't cover treatment and for many that means death.

We were lucky enough (if you can say that) to have some money set aside to get treatment from a Lyme Literate Dr out of state and be aggressively treated. That money is now gone and we have to use credit cards to get treatment. My husband should have had a direct PICC line of antibiotics because of his severe case but insurance would not pay. We could not afford $10,000 or more monthly for this treatment. Thankfully with an aggressive treatment plan(9 months so far)of daily medications and supplements his symptoms of not being able to speak and walk are gone. If he was never diagnosed he most likely would have ended up a vegetable in a wheelchair with a diagnoses of MS or Lou Gehrigs (which his primary care Dr did think it was).
He was tested many times here in MA for Lyme and none of them showed up positive. Only when he got the Western Blot test from IGENEX in CA did it show up. This is why correct testing is so important. Why Dr's here in MA don't offer you the Western Blot test is beyond me.

So this fight continues. A fight to get legilation passed, a fight to have insurance companies help pay for treatments and a fight to get this disease recognized as serious because it is more prevalent than AIDS here in the United States.

LYME IS REAL AND IT KILLS, please take time and watch personal stories online. Learn how we can come together to defeat this.

LLMD appointment

My husband and I went to CT to see the LLMD. It was another follow up appt for my husband. He may finally be able to get the picc line IV medication that he desperately needs to attack the bacteria quicker. Hopefully our new insurance will approve. Sad when you have to be rich to get the treatment you really need. He is on differnt medication anyway, now he is eating dairy products and says he is feeling much better on these meds.

Lyme is one hell of a disease. YES IT IS A DISEASE that is hardly recognized and some say it is not real, that it does not exist. That shocks me. Ticks can carry so many bacteria that can slowly kill you or quickly kill you.
YES, IT CAN KILL YOU.

I wish that our recovery is much quicker than it has been. It is a long, painful recovery. Painful because of the Herxheimer reaction. Killing the spirochites produces a toxin in the body which usually makes the treatment feel like it not working, sometimes creating a more painful cycle that is much worse than you ever experienced. I must say that even though the pain is great, knowing those little bastard spirochites are dying off makes me happy.
Some day there will be a happy ending to all who have Lyme disease.

In the Middle of a Stupid Streak

Oh Boy, I am seriously in the middle of a stupid streak. Its hard to remember things, hard to find the words that I need to use, hard to spell simple words. What is even harder is at work they know I have Lyme but they don't understand the symptoms that come and go. I made quite a few mistakes Sat at work and was really embarrased about it. I jokingly said to my boss, its the Lyme disease, and she said yeah, sure, in a nice way of course. She is very sweet but so many people don't see you as sick cuz on the outside you look fine (most of the time) well, anyway I do. If I was falling down of slurring words they would understand better.
I am hoping I am not going to eventually lose my job.
I feel bad for my husband as his journey in recovery has been so much harder. He faces the same reactions in the people he meets and he is working his ass off for our family regardless. Hey I try to buy a winning lottery ticket but that just never happens. Oh Well, we all must go on, doing the best we can and dealing with life.

Are You Not Feeling Well?

Not feeling well?
Dr's can't find what is wrong?

If you seem to have health problems that no one can pinpoint to a certain cause you should check out the list of symptoms for Lyme Disease. It is amazing how many symptoms there are and what Dr's many times actually diagnose instead of Lyme. Please check this list at:http://www.canlyme.com/patsymptoms.html

It doesn't hurt to get the Western Blot test for Lyme but definately have the Dr send it to the best lab in the country in California. Usually it is an out of pocket cost for this but it is very worth it!

Surfing Anyone?

WE HAD GONE AWAY ON A SHORT VACATION, PLAYED IN THE SWELLS FROM HURRICANE BILL UP IN MAINE (ON THE BOOGIE BOARDS) NOT QUITE UP TO SURFING YET.
Jeff had a tough time after about 30 min. hard for him to walk, sometimes he tries too hard to do the things he used to do so easily. He will get there, it just takes time. We still continue to laugh about things.
I continue to improve. Soon I will have a conversation with our specialist about the next session of medications. I am curious as to what he will say. So many of the symptoms have come and gone. At this moment, what I am experiencing are, creepy crawly sensations in my right shoulder, achy and stiff neck/shoulders, some stiffness when I get up from a chair but for now this is good.
I actually stood for 3 hours during the Bruce Springsteen concert in Mansfield.
Although my ankles and knees were really sore it was worth it.
We both continue to try to help others. For now the news about Lyme disease continues NOT to be a story on the front page of Massachusetts newspapers but hopefully, very soon, the laws will be changing so Dr's will be able to aggressively treat Lyme, educate themselves (because most of them haven't due to the recent laws) and truly be able to prescribe the most effective treatment without getting in trouble. Amazing how this disease is so widespread, yet, so ignored as a problem. That is until someone of importance comes down with it!!
Till next time!
P.S. I have started to paint again, feels great, nice to have inspirations and feel good enough to use them. This time I chose a 12" x 12" canvas. Usually I have only felt good enough to paint ACEO'S.

Feeling Better Again Round 2

Thats what it feels like, rounds in a boxing match. One minute your up, the next your down, not in such a short time of course but you can get what I mean.

I am feeling so much better, More energy, no depression, minimal pain. I actually went kayaking for about 2 hours yesterday, up river and then down. Was awesome, haven't done that in quite sometime. Now if I could only feel up to rock climbing I would be there. Maybe next spring!!

So things are looking up again. I am able to type better, think better and even spell better today. Its just good to feel like you can tackle anything.

Struggling with Setbacks (typical Lyme)

Sometimes you just feel like giving up. I know I can not, but some days when the symptoms come back you just feel like it.

Though not as severe most symptoms have returned and I continue with my daily swallowing of pills. Memory issues, saying what I want, misspelling words, minor pain, depression and tiredness have returned.
The depression I have stuggled with before but always have gotten through it.
I am normally a happy go lucky person, focusing on my artwork and creativity to get me through tough times. I am not quite sure the depression is related to Lyme but I will, as well as my husband, keep an eye on it.

When the symptoms do come back, which is expected because the treatment is killing them off, you feel like you will never feel good, pain free again. My husband as well as his sister are going through the same feelings, Jeff knows he can't give up, he coaches his sister, myself and others to keep going.

There is always something worse that can go wrong. I should be glad I am not dealing with cancer as so many of my loved ones are or have been.

At least I know that somewhere down the line that tiny shimmer of light will become more visable and within reach.
For those of you who feel the same, keep on going, talk it out, write it down, do whatever you can to keep the faith and smile alot.

The Return of Pain

It has been 4 weeks since I've been on my med's and the pain has come back. Although not as bad in the lower back, ankles and wrists, but in my knees, thighs, hips and buttock. I have hiked and swam even though the pain is there (like I always did when I didn't know I had Lyme). I know that it will subside again but it freaks me out a bit to think that these things are dying off inside my body. How gross!! I have been very tired again and yes you begin to think that the pain will return and never go away. I have to keep taking the med's even though I absolutely hate swallowing pills.
I cringe everytime I have to. I am waiting right now to take my morning ones.


I am so happy to see many people have read my husbands blog. He is truly helping others and that is very important to him. He has been having some of the pain return also but I made him come to the beach the other night thinking he would like to try a swim again. (He had been very nervous about getting back in the water and swimming) He loves to swim and the thought of not being able to or having pain and going under was terrifying. He did extremely well as I watched him go back and forth along the bouys.
Then he played catch with Trevor in the water.

I know that this is a journey that has many hills and valleys but I am happy to know that we continue to travel along it regardless of the deep valleys and the steep hills.

UPDATE

IT HAS BEEN ALMOST 10 DAYS SINCE I STARTED THE MEDICATION. I TRULY CAN'T BELIEVE THE DIFFERENCE. THE CHRONIC BACK PAIN THAT I EXPERIENCED FOR 4 YEARS IS GONE. TO BE PAIN FREE IS AMAZING. NO MORE ACHES IN MY OTHER JOINTS THAT LAST ALL DAY OR ALMOST EVERY DAY. I FEEL LIKE A NEW PERSON.

MY TMJ HAS DISAPPEARED.

THERE ARE DAYS WERE I FEEL TIRED BUT NOT THE KIND OF TIRED I USED TO GET.

SO THINGS ARE LOOKING GREAT!

MY SYMPTOMS

Since a few years back I had steadily become more achy in the knees, wrists, ankles and lower back. I truly thought that it was age related. Maybe some of it is. My thighs would also ache. Until this past year I noticed other symptoms but as I said before that they were mild and sporadic. These are some of the most recent:

increased motion sickness

short term memory problems

stabbing pains that last only seconds in various places such as, ankles, thigh, side, head, wrist, hand

my eyes went blurry one day while talking to a customer at work, both were blurry and then the right eye vision started to shake

extreme fatigue on occasion, tired most of the time

hard to concentrate

heart skipping beats, or beating funny for a few seconds

a slight buzzing in one ear

weakness in the knees and wrists

droopy eyelid

nausea

and I have notice over the last year and a half that spelling easy words was very hard

The most recent symptom was ear pain when I was chewing, now it has moved to the jaw, TMJ

I have started on the medications and supplements (one night and two days now) and noticed a change the next day. I wasn't achy at all, felt wide awake a ready to go. Even my eyes felt wide open. I ended up with nausea and diarrhia for the first couple of days but it is settling down. The Dr. said usually the symptoms get worse before they get better so we shall see. I know that my husband felt good the next day when starting his meds and then got worse for a few weeks.

Today I don't have as much energy and it is difficult to type and spell correctly.

I have worked in my garden planting flowers and weeding today, took my son out and now I am home writing this but plan on relaxing on the couch for a bit.

Feeling like a new person yesterday was amazing and I can't wait to feel that way forever.

HOW I FOUND OUT I HAD LYME DISEASE

My husband has been recently diagnosed with chronic Lyme disease after many years of suffering, Dr visits, thinking he was crazy and having mutiple tests done. Lyme and others came up negative, not once but a few times. SEE HIS STORY AT http://www.jeffslymejournal.blogspot.com.

We found a specialist, a "LYME" specialtist and drove 2 1/2 hours to see him.

After my husbands hour and a half visit, tests etc.... he suggested that I get the Western Blot test also to see if I have Lyme because we were here at the specialist and WHY NOT? So I got the test also. Weeks later we received the news.

My husband tested positive for Lyme and I so did I!

Wow! We were happy,(as you could be for that matter), that finally the tests showed up positive and treatment was prescibed for my husband but I was shocked that I tested positive for active Lyme!

I had very mild symptoms and never in a million years thought that I had LYME! I just thought that I was getting older, achy joints were normal and just ignored the other mild symptoms because they were so few and far between.

NEITHER ONE OF US SHOWED THE CLASSIC BULLSEYE RASH THAT MANY PEOPLE GET!

So now treatment begins for me. My husband has been on the med's for a month now with very much improved results!!! I just started and it feels strange because I was never on many medications all at once. But I am glad that we caught it early. Lyme is a terrifying disease. So many people have so many different things happen to their bodies. "UNDER OUR SKIN" is a documentary on Lyme disease and it is very eye-opening and shocking to see but a must, I believe, for everyone!!