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.

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.

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.

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.

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!

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.