It just occurred to me that from Oct 2012 to Oct 2013, I did a lot. I ran a dishgarden business and opened up a flower shop . Worked hard 6 to 7 days a week. It is now 2016, I sold my flower shop back in April and started to do what I really wanted to. I learned Tuning Fork Therapy. Amazing stuff. I now have a company called The Harmonious Soul and do the tuning fork treatments along with sound therapy using singing bowls, drums and such. Life is better. I am also opening up a Wellness Center in the next few months.

The Lyme Dr? We haven't' seen him in quite some time. Both of us are so much better. Still have minimal issues. My husband...the ringing in the ears never quits but only quiets. He works so unbelievably hard. Never gives up on anything. Loves life but wishes the work did not control life.

Me......I still get tired sometimes and do not have the energy I did all those years ago. Minimal depression but that always seems to be about the money thing. We work so hard and it all just goes
to bills and we can't seem to put anything away.

Our Lyme is at bay if not gone. There is always a worry that it will come back. This winter was extremely mild and the ticks have been out all year. We check ourselves but you never know. At least we have been there and back. We have experienced what Lyme does, how long it takes if you end up with Chronic Lyme. We have the best LL doctor ever.

We work, live our lives, struggle but still survive, so far, so good.

Who know what life will bring. Don't wait for the bad news, live day to day. Conquer if you can, climb that mountain and keep walking in the vallys. We are all human. Be kind, considerate, help others fight the fight but give yourself credit. Take a little vacation. I want to live, not just exist.

HANG IN THERE. YOU'VE GOT THIS!

October of 2013

Not posting too much here these days. I think that I don't like to remind myself that I have a blog, a lyme story, an ongoing story. I want to feel normal, young, energetic and more. Lyme disease has taken a lot of my health and life but I still fight the fight. I still work Tues-Sat at my floral shop, do what I can at home. I still have to pick and choose what I want to do on my off time, of late? well, its not much of anything. I find myself really tired, I can hear my lyme Dr saying that I should take these supplements to get more energy back. I am so tired of swallowing pills I don't want to unless I am so sick I have to attitude. My husband is so very good at swallowing pills, he can swallow a handful at a time twice a day, not me. I dread it, always have, always will. Anyway, I feel so drained I hate to do anything. My comment was to him this a.m.
I wish we would win the lottery so we could do whatever we wanted to......meaning I was too tired to go to work, do the every day stuff and that I could relax, do my photography, go at my pace instead of the worlds pace. Well, at least my two feet are walking. It could always be worse.

Yes I still have some symptoms but I must say that the both of us are doing extremely well.
Even though I feel exhausted and he is too, we both work a lot, we do a lot, we try a lot, we are not ready yet to give up. 





 

Here It Is A Year Later....

Last year at this time was my last post. After finishing up the medications last time I decided to take a break from everything. I was feeling great. No symptoms, working hard, and totally ignoring the fact that I have Lyme disease. I did not get the test to check if there was active lyme in my system. At that time we were trying to get our lives back together with working and trying to put away some money that we spent for our treatment actually saving for the treatment again and again. That is a hard thing to do in this economy especially when your so sick you can not work and your saving go quickly. So I ignored everything. Symptoms started to come back in August. First it was horrible air hunger. Then it was constant neck and shoulder pain. Come to think of it, I had those neck and shoulder pains 3 times in the past year. So bad at times I called my regular Dr and told him of the pain, went in and had xrays done on my neck and upper back, he did blood work etc... and followed up with me. He prescribed anti-inflammatory and pain meds. Eventually the pain would go away only to come back a month or two later. I didn't think it was related to the lyme back then. But now when the severe air hunger started I still had some medicines left over that were still good and decided to do a treatment that the lyme dr gave me before.  I took 3 weeks of them. They seemed to do little if nothing and the pains got really worse after I took myself off. So we both have an appointment on Dec. 3. I am worried about paying for the tests that we both need and the visit to the Lyme Dr. It has to be done regardless but we are stretched to the limits here. There never is extra money for anything let alone trying to get ourselves back into a healthy state again. I know HUH? honestly I tell myself to call 1-800- WAAH :)

Let me go over these symptoms that flared up again. Air hunger, neck and shoulder pain, stabbing pains anywhere in the body at anytime, memory issues, spelling issues, nausea, pain in my lower back, hips, thighs, knees, elbows, arms, hands. Tendinitis, Dizziness out of nowhere along with pressure in my head, I would think I was going to pass out. I also had the feeling over the summer that I couldn't drive safely. Hard to explain but almost felt like that section of the brain wasn't working and I was afraid I would get into an accident. Sounds funny doesn't it, "missing brain sections". Honestly it really felt void somewhere in there.
Now when I work hard in my greenhouse making my dishgarden orders I am racked with pain, severe pain like I was hit by a truck. This is so hard to deal with at times especially when you look alright from the outside.

I don't know what the future will bring. I only know that it will be filled up with new treatments until we are symptom free and take a blood test to see where we are at.
I have to admit I know people with lyme who are much worse off than myself or my husband is. Symptoms they will never get rid of and literally are scared they won't make it much longer. Some are strong regardless of what they go through, others are just bedridden, waiting, for something to happen to get better or to just wish it would end.

Lyme is so serious it boggles my mind how trivial most Dr's and people think it is. "Oh you have lymes?" Yeah my dog has that too!" Thats what I hear all the time. Until they experience it for themselves they will never know the damage it can cause, sadly even death. It is still sad that chronic lyme "does not" exist in most Dr's eyes (world). WE ARE PROOF. STOP THE MADDNESS, STOP THE LIES, STOP THE POLITICAL FIGHTS. Those of you who deny it? Well, it saddens me to wish upon you what people who fight this nasty disease feel everyday and then to be told your crazy and it is not lyme. Walk in these shoes for one year then come back and tell us its not real. Tell me those tiny spirochetes are not real swimming in our bodies and delivering us into hell!!!!! We live in the hell, there is plenty of proof, it does do damage beyond repair and it does kill.

For the people who read this and think they may have it, NEVER GIVE UP, NEVER TAKE NO FOR AN ANSWER FROM YOUR DR. YOU MUST FIND A LYME LITERATE DR TO TREAT YOU OR AT LEAST A DR WHO BELIEVES ITS REAL, WANTS TO KNOW MORE AND TREAT YOU WITH THE HELP OF A LYME LITERATE DR. FIGHT THE FIGHT IF NOT FOR YOURSELF THAN FOR YOUR CHILDRENS AND FAMILIES SAKE! THIS IS NOT A FICTIONAL THING.

Still Fighting the Fight

Still fighting the fight, :(
Sad but true, when you think its over, its not. But I am still fighting the fight.
Back on medications 2 weeks on and then 2 weeks off. I delayed getting back on them
due to a "turned 50" procedure that was recommended. So after that was done I got back on. 2 weeks I'm thinking great I don't feel any difference. Just when the 2 weeks were almost over I started with hip, knee and ankle pain along with one foot aching. Two days later (I had to unload 52 plant boxes from an 18 wheeler and by the time I was finished with 3 loads hauling from one place to the other I had to lay down. Hurting from head to toe I didn't move a muscle for about an hour on the couch, then I had to get up and unload each box and put thousands of plants away. I was totally exhausted and hurting for 3 days after that. I ended the meds on the 3rd day after that to begin my 2 weeks off. I did notice the pain diminish. So I am thinking that was all Herxing. We'll see when I begin my 2 weeks on again.
NOT LOOKING FORWARD TO THAT.
One thing I did do in October was another art/craft show for 3 days. When I do those I pass out free information on Lyme disease and most people want to talk. Its nice to just get educational material out there especially in MA.
I still travel (along with my husband) to Bridgeport, CT. to see our lyme specialist. He is amazing!!! We have helped so many others and we met one of the families on our last trip there. We (especially my husband Jeff) got hugs and kisses and praise from the mother and from the young man. He is on his way to better days. I love that part of it. HELPING OTHERS!! My husband does more of that for people he meets. Just to see happiness and relief that they have found some actual help.
Well onward and upward is all I can say now.
Fight the fight and never give up!
PEACE

Bad Girl

Well, since Lyme has drained most of our money and most Dr's in Massachusetts don't know much about it, we have missed appt's with our Lyme Specialist. Its hard when insurance does not pay for out of the "system" Dr's. At 250 dollars each, my husband and I, thats a lot of money to dish out. After being off the meds for two months, things have come back.
At times incredible joint pain in my hands, elbows, back and knees. Stabbing pains in legs and arms. I should be glad thats all thats back but we need to go back and get another round of meds. So we will be calling the Dr. soon.
I wish we could find a Dr in the "system that is as educated as our Lyme Literate Dr. But since MA recently passed a law for Dr's to treat it longer than they were allowed maybe someone is out there that the insurance will pay for. Thing is, how do you find them and how long can you wait. Switching Dr's is not fun either.

Its been awhile!

Yeah, so what.....its been awhile. I know. I am trying to ignore the Lyme thing. Its bee too long, met too many other people who have it or think they do or are seriously ill from it. So sad. Still frustrating!

I went for another Dr visit this summer. He thought I was almost done with it. He is a bit late getting back with test results though. Anywho, the tests show I still have Barbesia and 4 Lyme bands. I didn't call him yet to see whats next. One part of me says forget about it and the other part knows better.

Lyme sucks, no if's and's or but's about that.

I was on the 2 weeks on meds and then 2 weeks off but now I think that will change. Can't wait for this to be over, but then again I am afraid to get bit. Actually had a tick on me yesterday, in my ear.
Never felt it but I think I got it before it attached.

I hate them. I think we can live in the world without ticks......

till next time

so far so good

I am feeling much better, lots of energy, head really clear, easy to remember things at work, body aches very little. I still have sutle symptoms, off the doxy, wishing I could take it thou, had lots of Herx with it but that means it was doing a good job killing them off.
Tick season is beginning and I find myself scared to have them on me again. I want to find some all natural product ( maybe make my own) to put on, maybe some essential oils in suntan lotion, I will have to experiment to see what helps. Pets need to be treated also.
So far so good. We will see next month how its going.

sad

Well, since I started on the new medications I have had some problems.
What seems like a bladder infection has come up negative, my body tries to get used to the new drugs, diarrhea, nausea, muscle pain and other things have come about. Not fun. I can't tell if its the Lyme dying off or if the new drugs are causing it. I am waiting to speak with my specialist again.
Its hard when your body is adjusting to new medications but it certainly isn't fun at all. Makes me just want to quit everything and walk away. I know I can not. I know there are people out there whose suffering does not compare but sometimes I can't help but be bottled up in my world.
When will this all end? I want my life back, I want to do the things I used to do without the pain and fatigue and the limitations.
I feel like I haven't been a good parent or wife. I feel very alone sometimes even though people surround me. I know tomorrow will be better, it always is. I just feel a bit sad today.

Visit with my Lyme Specialist

Wed. Feb 24th, we drove to see our Lyme Specialist in CT.
I was feeling much better and had in my mind that maybe, just maybe I would be getting of the meds. Not the case.
Dr. Sabovic went over everything, what symptoms do I still have? The whole list.....even though I feel 80% better than when I was first diagnosed we have a while to go yet. A new round of antibiotics, oh no, Doxy, so I have to be extremely carefull in the sunshine!
The symptoms that I still experience were lower back pain, hip pain, thigh aches and knee pain, upper back shoulder stiffness, pain, creepy crawly in my left shoulder, and a vibration in my right thigh. Although these symtoms are drastically reduced from when I first started treatment it still means Lyme is still there. I will be on some new supplements to help fight Lyme that may be encased in biofilm. If you read up on lyme you will understand. Antibiotics alone will not penetrate the biofilm so the supplements weaken the biofilm and allow the antibiotic to get inside.

So looks like another 2 months on so on this medicine (as my job allows) since I work in the sun a lot at the Greenhouse. Then maybe 2 weeks on and 2 weeks off. We will test in 2 months for Lyme again and follow that up when all said and done for 2 years to make sure it is all gone.

Though i am depressed that I still have awhile to go, I do feel much better.
Its hard to complain when I see people who are so disabled by Lyme and struggle daily to fight this horrific disease.
God bless you all. You are in my prayers.

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.

feeling better

Things are feeling mostly back to normal. I had a few days were I felt air hungry, some days with heart palapatations, forgetting things less but still here and there. I think that is one of the scariest things for me. When I truly forget something I did. Can't wait to be finished with all the meds. I still have some depression (working on it) but probably due to money stress. Things are getting much tighter with cash. Its nice to go to the specialist but I feel very strapped with my funds, not to mention I have a root canal going on and that is just more $$$.
Jeff is feeling better also, he is also stressed but is trying very hard to focus on his new job. He is doing fantastic at it. Somedays are harder than others, he still gets ringing in the ears, especially when he drives a lot.
We are both exercising a few times a week, trying to get back in shape for the summer. Can't wait to hit the beach, maybe surf, and Jeff can finally get some sun (he is off that medication)
Till next time.

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.

Shame on Me

Last night I slept so good, hardly any pain, which was making me toss and turn the for quite a few nights, and I really felt rested and ready to go. I went off on my errand to Pompret, CT about 60 minute ride. On the way home I was getting more and more tired. I had planned on doing some more errands but by the time I arrived home I was exhausted and just looking forward to a nap.
This is the disappointing part of LYME.
You feel good one moment and then completely different hours later.
I really shouldn't complain since my husband is sicker and he just keeps going regardless.
shame on me

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.

Just Joined a great support Group Online

This morning while I was surfing online I found this great site http://www.mdjunction.com/ A wonderful place to connect with others when you need support for an illness.

After my husband was FINALLY diagnosed with CHRONIC LYME Disease in June 09, he and I just want to help others with it.
I feel that his blog can help so many who are experiencing the same thing.

My blog was first created for me to keep a bit of a journal and if it helps others thats fantastic.

For anyone that wants to talk, not a problem! We are both here for you, to help in anyway we can.
Take care everyone, there is a light at the end of the tunnel. A good light!

Physical with my Primary.

Saw my primary today. Had a physical. This is the first time she heard I had Lyme Disease. I didn't send her any info from my Lyme specialist mostly because it seems Dr's around here just dont' get it, still!
She was surprised and asked me about the meds I am on. While punching all this info into the computer, she asked me questions about symptoms. All and all not seeming too interested in what I had to say. You know, I was there for a physical and she only had 5 minutes to see me.
Boy, I am so spoiled from my Lyme specialist. After all he acutally sits and listens to what I have to say, really listens. I think its time to find a new primary. Am I alone in this? Will I find a primary that will take the time needed to talk to me?
Just venting a bit.

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!

ANOTHER DAY, DEJA VUE

Sometimes it feels as if I'm saying the same things over and over again, sounding like a broken record.

I have emerged from a month long cycle that was very difficult.
Dealing with waves of extreme fatigue, lower back pain making sleeping difficult, TMJ, and other aches and pains.
Within the last week I have felt much better again, with renewed energy, less back pain and no TMJ.
What I do notice is the pain that comes after doing some very normal chores.
For instance,I got up Sunday morning a bit tired since I was a vendor at a craft fair on Saturday. The task of loading up my car, unloading and setting up, standing all day, breaking down the displays and repacking the car was quite a lot.
After breakfast at about 9:30 I decided to unload the car from the previous day. After my husband and I unloaded the car, we cleaned out the barn which desperately needed it and filled up the dumpster. Then we decided to clean the gutters. Jeff placed the ladder with little help from me and I climbed up and down cleaning them out. The front of the house being two stories and the back 3 stories. Then I cleaned the house before company arrived, unloaded groceries from the car when Jeff returned, helped clean up while Jeff was cooking and then relaxed with our guests.
I had the energy to do all those things and wasn't complaining about anything but after sitting for awhile and then standing my body hurt. Not just my back which would normally be where I would have pain but my entire body. My feet hurt and I couldn't believe it. My hands, neck, and my lower back, it felt like I had been hit by a truck. AAAAHHHHH! HOW I HATE THAT.

I know I have talked about this before but living with constant lower back pain for so long then having the majority of it go away when I started treatment was a true gift of life. ENJOYMENT!!! I was able to NOT think about the pain (which was every minute of every day previously).
So feeling the constant pain again with my back is very disheartening.
I hate for that to come back, I don't want to feel 80 years old, I don't want all my muscles to ache. I HATE THE FEELING THAT EVERYTIME I DO SOMETHING STRENUOUS MY BODY REACTS IN SO MUCH PAIN AFTERWARDS!!!

I had to work today and I made several floral designs to go out and worked the entire day without many problems. Now my knees are the part of my body that hurts.

THIS IS LYME DISEASE. IT DOES WHAT IT WANTS EVEN WHEN WE ARE FIGHTING IT!
The best part is we can fight it, when the cycle ends and you feel better, you forget how sick you are. Knowing that someday soon this will all go away (as long as I am good about not getting bit again)

2 month update with Dr. Sabovic

I had my 2 month talk with the specialist, Dr. Sabovic, the other day.
We went over how I was feeling, what had improved, how much of an improvement it was and the symptoms that are still with me.

We also talked about the medication and how it was working for me. Sometime I still get stomach upset but nothing serious.

I discussed what had improved since I started the meds and that it was about a
60-70% improvement from what I felt like before. I still get that creepy crawly feeling in my shoulder, neck and upper back stiffness, weakness in my wrists and knees and tired but not exhausted. My memory has improved as well as my concentration and my spelling is improving (although I still have a day here and there that spelling can be difficult)

If these symptoms do not improve we will change the medication.

He also said that I tested positive for Babesia, which is another bacteria that the tick carries. It usually goes hand in hand with Lyme. The normal number is 14/15 and I tested 16. So it was just over the norm. He asked me if I had any night sweats or felt a chill right to my bones. I have had some night sweats but so infrequent that it is not a concern.

He also asked if I had air hunger. I had to repeat that one back to him, AIR HUNGER?
did you just say air hunger?
Yes he did, it is when you feel like you just can't get enough air and breath in deeply. Not like an asthma attack but just a need to get extra air.
I have had that on occassion also but not to the point where I thought it was an issue.

The medication I am on should be good for the Babesia and I will monitor my progress closely over the next few weeks. If there is no improvement in my energy (which is my biggest concern now) I will contact him.

I am also going to get lab work to make sure the med's are not harming my liver.

So things are getting better all the time and I have been very busy with my artwork for this Saturdays Fine Arts and Craft show in Lexington. Onward and upward we go, one day at a time.

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.