So last Thursday night I was complaining that my arm hurt. The pain was directly under the piccline- it felt like I had a big sore bruise. I ended up ignoring it and I went to sleep (well the best that I could).
Friday morning my friend, Tammy, offered to drive me to my infusion, which of course I was excited and thankful about. As I was getting my infusion I told Tammy that my arm was hurting me. The nurse heard me and said that I needed to tell him these things and he went and told the Practitioners Assistant that was in the office. She gave me a script and told me just to be safe to go and get an ultrasound.
I wasn’t really that worried but just wanted to go to be safe to rule things out. Tammy called and got me an appt. at a radiology place right after my infusion. When I went back for the ultrasound I was telling the technician where my arm hurt. She then began the ultrasound. So I am watching her face as she is taking the ultrasound and I could tell that she saw something. She wanted to take off my dressing to see more of the arm but I told her couldn’t unless she had another dressing to put on. She then told me to wait here and she wanted to talk to the radiologist.
Now I was scared! How you ever been to a place to get an xray or ultrasound and the tech leaves to talk to the radiologist? I know I haven’t before this! As they tell me to wait I am about to cry. I run out to the waiting room to get my friend who was very calm because I sure was not!
They were trying to get a hold of my doctor which they could not so the radiologist had me in his office to explain what was going on… he said I had a blood clot and I needed to go to the Emergency Room!
Now, I knew it wasn’t “that” serious because my friend could just drive me there and I didn’t need an ambulance but….. I was scared. The radiologist called over to the ER for me and off we went. Tammy stayed with me until my parents and husband came. (I’m guessing Tammy didn’t think that by offering to drive me to infusion she would be in for a suspenseful day! Thank you SO much for all of your help and support Tammy! You’re the best!)
The ER doctor looked at the film and called my doctor. They decided that the Piccline needed to be pulled. So I only had the line in about 2 weeks! Of course I was upset because I knew that I still needed to receive IV antibiotics and that I would have to go through getting another Piccline. This is not the most fun thing to get done… but I know things could be worse.
The ER Doctor pulled the Picc and I went to have a second ultrasound done. They found the clot was bigger and it was in the vein that the Piccline was in- Thank goodness I felt the pain, they found the clot and pulled the line! I am lucky that the clot was not that deep or I would have been in trouble.
My directions are to heat the arm a few times a day as well as take aspirin once a day to help thin the blood.
Today, I went to have my THIRD piccline put in and unfortunately it had to be put into my right arm since the left arm had the blood clot. When I first had a piccline in September it was in my right arm but my right arm wasn’t very mobile at the time and I was just starting OT/PT. I have been working hard in OT/PT and now that the piccline is in my right arm I can’t do the strengthening that I was doing- I am pretty upset about that.
So my new piccline was put in today.. it is what it is. I just hope this one is and lasts me until June…. So fingers crossed!
So last Thursday in physical therapy was- AWESOME!
Mike, my PT, thought of trying to put tens electrodes on the bottom on my foot. He placed then on the bottom of my heel and under my arch.
The Tens sends “vibrations” to my brain telling my brain where my foot is and that it needs to walk! The pads stick to the bottom of my bare foot. I then am able to stick my foot into the shoe (without my brace) wires then go up my leg to a controller then I chose which frequency I need my foot to feel in order to walk.
I found this picture online to what the Tens electrodes look like:
This is a video of my walking. You can see when I start the controller on my pants. I am SOOO Happy! This is giving me so much to look forward too! Flip Flops here I come ( hopefully- sooner than later )
So last Wednesday I had my appt. with the integrative medicine doctor. He went over how many of my co-infections are still testing positive (mycoplasma, bartonella, babesiosa). He also talked about how my nerves were still numb and tingling (especially since my Bells Palsy came back about 3 weeks ago).
I did do the autosanguis therapy as well as acupuncture. I have to say that I am not noticing if the acupuncture is working and I think it is mostly because I have trouble relaxing. He did place the needles in my face where the Bells was so we will see. (My Bells Palsy does look a lot better than it did but it still feels tight on my face)
He then discussed injecting me with Bee Venom. I seriously thought that he was going to stick me in a room with 100 bees stinging me. He said that this is a therapy used for many people with chronic illnesses such as MS. And no.. he does not sting me with a real bee but the venom is in a needle that get injected into me.
He tested the back of my neck and arm to see if I was allergic-which I wasn’t. So this Wednesday I am going to go and have the Bee Venom injected into my head (closer to my brain since the Lyme is in my brain) I will keep you posted to see if the bee venom works. Let me know if you have ever had bee venom injected or have heard of this- I would love to hear some feed back
I came across this poem on another Lyme fighters facebook page. This poem says it all and I wanted to share :)
While from the outside I may seem normal,
It’s the part that you can’t see,
The constant pain and struggles within,
Are ever so apparent to me.
~
Although I may wear a smile,
Often times it's covering the tears,
Yet not tears because of sadness,
As it often may appear.
~
Don’t be too quick to judge though,
Because there is so much more than is known,
What may seem to look like one thing,
Just might turn to prove so wrong.
~
I may sometimes seem unfriendly,
Or too centered around self,
Because sometimes standing takes all I’ve got,
And there is just no energy left.
~
Sometimes my words may sound awkward,
My communication may not always convey,
My true inner thoughts and feelings,
Aren’t always expressed by what I say.
~
You may think that I’m not really listening,
Sometimes my face or speech may not show,
But I do hear every word you say,
I really want you to know.
~
The information doesn’t always process,
As quickly and as clear,
And sometimes it takes me longer,
To interpret what I hear.
~
I possibly miss many opportunities,
To offer needed love or support,
Because sometimes it just takes to long,
For my thoughts and words to sort.
~
So if my actions seem inappropriate,
In the things I say or do,
I hope that you can understand,
That it is not because of you.
~
There are times I get discouraged,
When forced to accept my inability--
It’s hard to admit my limitations,
And it leaves me feeling so guilty.
~
Yet every moment is a reminder
As I look all around,
The effort it takes just to get through the day,
Just picking my feet up off the ground.
~
I am not looking to find pity,
I am just attempting to explain,
That the person that you may often see,
And the real me aren’t exactly the same.
~
You may not see the peace and joy,
When you look upon my face,
But I know that each day I live,
Is because of God’s amazing grace.
~
It is hard to always be cheerful,
When the pain is so very real,
And not everyone can comprehend,
The extend of how I feel.
~
I don’t see it as all bad though,
Although I’d much rather it not be so,
But I know that if I must endure,
God will strengthen me as I go.
~
It may seem as if I take no pride
In the way that I look or dress,
However, there might be much more going on,
Inside of the big mess.
~
My home may not be nice and neat,
My bed not always made,
The laundry may not all be done,
And often it makes me ashamed.
~
But I must only do what I am able,
Each day I have to choose,
What is most important right then,
And the tasks I am able to lose.
~
All the plans and dreams I once held,
Now don’t seem quite so clear,
Yet I feel a peace within,
As my Lord keeps drawing me near.
~
To have a chronic illness,
Or a disability that one must bear,
Somehow puts life into perspective,
And helps to make us more aware.
~
I realize now that each day I live,
Is a gift from God above,
It is hard not to lean on Him,
Or to look to His great love.
~
I now can fully understand,
On my own, there is nothing I can do,
It is only be faith and prayer,
That I can make it through.
~
It may seem an exaggeration,
No one can always feel so bad,
But only those who have walked in these shoes,
Can appreciate the battles that I have had.
~
I see so many people less fortunate than me,
Don’t have to look very far,
There are so many suffering all around,
It doesn’t matter who you are.
~
Circumstances and illnesses can hit unexpectedly,
And you can never really be prepared,
It may be difficult to understand,
Leaving you vulnerable and feeling scared.
~
I must constantly guard my thoughts and mind,
As Satan always tries to bring me down,
He wants me to feel hopeless and unworthy,
And turn my smile into a frown.
~
It is hard not to get depressed,
When I see the burden my family must bare,
The fact I cannot always meet their needs,
No one could be more aware.
~
There are times I feel like giving up,
When I look too far ahead,
But I know if my loved ones were given the choice,
They would just choose to have me here instead.
~
There are so many ups and downs,
New challenges each day,
I must strive to keep my eyes on God,
So that I be not led astray.
~
It would be so difficult to cope,
Without God, my hope would all be gone,
Because through submitting to Him in prayer,
Is when my weaknesses are made strong.
~
So when you see the way I look,
When my insecurities are in view,
Base who I am on what’s inside,
Not by the things that I can do.
~
The greatest lesson that I have ever learned,
Is the reason that I am here on earth,
Is not to live for self and gain,
For in these things are not my worth.
~
God has a purpose for my life,
Although the details I may not see,
He still has it under control,
And is continually watching over me.
~
Maybe one day I will be well,
And my health He will restore,
But if that is not in God’s will,
I will still praise Him ever more.
~
If this suffering can bring honor to Him,
I will gladly accept the call,
Because of His great love for me,
He suffered and gave His all.
~
I have to believe that what I am going through now,
Will somehow work together for good,
And one day it will be revealed,
And all things will be understood.
~
While I still worry about what you think,
More the example that I may show,
I am learning so much more each day,
And this has really helped me to grow.
~
By: Mary Hastings, Written May 2003
Today was the 5th day of my infusion only 55 more weekdays to go….and boy have I been sick.
The average that my infusion is taking is between 4-6 hours ( daily) and I have to drive ( well be a passenger) an hour there and back.. It is just taking a toll on me but I can’t wait to feel better! I am so appreciative of all the people that have taken me this week and stay there to support me while getting the infusion.. much love and thanks to my mom, my stepmother, my husband & stepfather.
I am doing pretty well when taking the Rocephin (I was on this before for 28 days intravenously but the doctors pulled the Picc and that is why I am not better). So you wonder why they pulled the Piccline before? Well because the IDSA guidelines state that Lyme Disease patients should all be treated the same. Doctors need to realize that they can’t just treat everyone by the guidelines and that they need to treat the Lyme by the patient. Everyone has different symptoms and need different antibiotics. It is important that you find a doctor a (LLMD) to treat you for your symptoms and how the Lyme has infected you.
I am also taking Vancomycin. This antibiotic is the one that has been making me pretty sick. High blood pressure, heart beating fast, nausea, dizziness. They had to slow the drip- just this one antibiotic alone has been dripping for about 3-5 hours a day. The doctor explained that this helps push the Rocephin into my brain faster and harder.. so we will see!
When I met with the Doctor she wrote me a script to get a Brain Spec Scan- she said that the Lyme is definitely in my brain and this will show how it is affecting my brain. I am anxious to see the results in the beginning of this treatment and compare it to the end of treatment.
The doctor also discussed my blood work and how all my tests are all positive and reactive. It is important to know that I consider myself “ one of the lucky ones”. I know that I have had a few Drs. misdiagnose me but most of the others getting infusion tested negative for some of their blood work. It is important to know the symptoms that Lyme can cause and continue to retest or try to start treatment.
The way the test to find Lyme is not to test really for the bacteria itself but to test for the antibodies that the body will produce to try and fight the disease. My body was just fighting too many other things such as the mold, metals, and co-infections that my Lyme was winning..
So here I am beginning my treatment yet again about 7 months after I was diagnosed. I am hoping for the best and am staying as positive as I can.. sick and all Thanks for all of your support and please continue to RASIE AWARENESS.. and also to treat your lawn for ticks and to get frontline for your pets to help prevent Lyme.
My piccline was put in yesterday.
I did go to a hospital to have it put in and then went to the doctors to have my first infusion. The intravenous medications I am on are Rocephrin and Vancomycin. The Rocephrin takes about an hour and the Vancomycin takes about 2 hours.
Yesterday, the infusion lasted about an hour and a ½ before they only gave me half a bag of the Vancomycin. Today my infusion lasted 4 hours. The reason it was so long is I was getting sick so they have to slow down my drip.
Though I am not feeling that well right now.. I am really hoping that this Lyme is dying! Between my integrative medicine doctor and my LLMD I am only looking towards the positive!
My symptoms that I have been having lately are fatigue, neuropathy (numbness and tingly on right side), headaches, joint pain, and confusion/short term memory loss. I am hoping that once I am on these intravenous meds for a while that I will start feeling better. But I know I will feel worse before I feel better.
I had to cut down on my Physical Therapy because the medicine is taking a toll on me and with the Piccline being in my arm I can’t do as much with my upper extremities. I was lucky enough that they agreed to put the Picc in my left arm so that I am still able to work on strengthening my right arm.
While I am on the Picc and having these intravenous medications I have to have my infusion done at my LLMD’s office. Which means that I need to find a ride there everyday (off on weekends- on the weekends I am on Ceftin which is in pill form so I can take that antibiotic orally) I am also taking Azithromycin Mondays, Wednesdays and Fridays. I am also on Butyrate, which helps my gallbladder, while I am on all of these medications.
While on all of these antibiotics I will have blood work taken every week to check my liver, kidney, and other organ functions. I will be on these intravenous medications at least for 60 days.
Last Tuesday was not such a great day for me..
Around 7:30am I woke up with a numb tingling feeling on the left side of my face around my mouth. This feeling I knew was one I had before… I woke up with bell’s palsy AGAIN! I will say that the bells this time was not as bad as it was before but also my old bells I guess never really went away from what the neurologists say. When I looked in the mirror it was confirmed- my smile was not the same on both sides. I then knew that today was not going to be my day.
I then went to my integrative medicine doctors office to do my therapy treatments: the ozone sauna and the AutoSanguis Therapy. When the nurse went to take my blood for the autosanguis therapy I felt her pretty much digging into my arm.. all of a sudden I felt a pull or a snap in my arm and my left arm went numb. Great, the one arm that works well is now numb. My arm swelled up and I asked her to stop trying to get my blood.
After I was done crying I then proceeded into the sauna where it got up to 106 degrees.. and boy was I sweating. As mentioned in my previous post here is a picture of me in the sauna. Please note these picture are of me in a serious and sad part of my life, I look terrible, feel terrible and its all just terrible.. this is to help raise awareness of what Chronic Lyme can do.
After 30 minutes in the sauna I found 2 nurses to help try and take my blood for the autosanguis therapy- and with the two of them we found success.
I then had my drive to my LLMD to hear about my blood results. This was going to be a big appointment because I was going to find out if I needed another Piccline. Of course, I was hoping that all the natural medicine and therapies that I was doing would work and that my blood tests would show that I was getting better… but I was wrong.
My husband and I got the news that my blood tests showed that my Lyme was indeed still active and my numbers went up. So pretty much since August I am thinking, well I know, that this Lyme never died- or I guess even came close.
I am going to the hospital tomorrow morning-Monday, March 12, 2012. I will need this piccline for at least 60days. I am getting 60days of intervenous meds but am off on the weekend. I think I will be done around June 1, 2012. I will post what medication I will be on starting tomorrow once I see my script.
My doctor is an hour away and that is where I need to have my infusion- I have TRIED everything to have my infusion closer to home but sadly it can’t be done. I can not drive so I am trying to find rides between my family and friends. When people are fighting against Chronic Lyme they have to find LLMD doctors and there are not a lot that are close. This disease needs to get heard and we need to raise awareness.
I’m not gonna lie- I am really nervous and scared. I had no problems before with my piccline but I know there are great risks. I guess I am just feeling that my luck hasn’t been that great and having another piccline is just scaring me a little. But, I am looking to the positive- just think.. I could be great by June 1.. nice and healthy and ready for summer! So all I ask is to send some prayers my way that my fight against Lyme will be over in June (which will be almost a year in which I diagnosed)
Since I am not going to be feeling that well with all the new medicine and I will mostly likely be “herxing” which is where you get worse before you get better, my PT moved my therapy to only 2x a week and that is if I can handle that. I am just hoping that I don’t lose all the progress that I have made with my fine and gross motor skills. I am planning to do therapy on my own at home daily.
I will post how my day goes tomorrow as soon as I can. Thanks for reading and Let’s Raise Awareness!
On Wednesday, February 29, 2012, I went to see the Integrative Medical Doctor. Before he started the testing I told him that I have been on so many antibiotics that something had to be gone in my body. I am not feeling that well and I know that not everything will be cured right away but I am trying to stay positive!
The Doctor began my testing… Good News- he said that the parasites were gone!!! Yay!! He said that 2 of my co-infections cleared up and my mold infection was better!
He said that I am still testing postive for active Lyme and 2 co-infections. I also am still fighting off the metals in my body. He gave me more of the gross garlic pills as well as a new dropper medicine called Lambda- yes I have been getting a little sick so hopefully that means its is working!! So…. This is what he had be do at my appointment.
First he had me do accupunture. This is a picture of me getting the accupunture at the Drs. There is a heat lamp on me to help the blood circulate.
Next, he said that my immune system is very sluggish and he wanted to try another type of therapy called, Auto Sanguis Therapy. I looked up exactly what is was and I found a definition from the website listed below.
***AutoSanguis Therapy (also known as Auto-hemotherapy) takes blood from the patient‘s vein, mixes it with adequate homeopathic remedies and reapplies it via intramuscular injection. Applying only a small amount of the own blood activates the patient’s immune system. AutoSanguis Therapy is an old, proven treatment that has been successfully used in Europe for a long time.
http://european-foot-reflexology.com/14.html
Yes, It was weird that they took my own blood out of me and then reinjected. The Doctor said it was to pretty much to wake up my immune system. The Dr. wants me to come to his office (which is about 45 min. away once a week to get this therapy done). I only had it on Wednesday and I did not see a change yet… so we will see.
Also, the Doctor and I discussed Detoxing. He said he wants me to come to his office once a week to go into his ozone sauna. So I am now also getting ozone sauna therapy. You go into a little tiny box and your head sticks out of the top. They program the ozone temperture and your body sweats out all the toxins. I found a picture of the machine online but I will try to get a picture of me in it this week. I feel that I probably look pretty funny in this thing!
I am suppuse to be in the machine for 30minutes but I only lasted 6 minutes. I felt like the back of my knees were steam burning. I am going to try to put a towel around my legs this week. I do go into this ozone sauna completely naked.
I am going to my LLMD on Tuesday and I will find out if I do indeed need the piccline for 60 days. I am hoping that my intergrative medicine doctor’s medicine and therapies are working and I many not need the antibiotics.. but its not looking too good right now. I will probably need to do all therapies along with the piccline.
