Bad day? Call it a "Throwin' in the towel kind of day."

            I would say these days happen more often than not....

I'm NOT going to say it gets better, because honestly I don't know yet. 

I havent gotten to whatever that "point" is yet. 

                             What I DO know is.... Im learning...

...You have take those days, and those feeling you are feeling, whether angry, sad, fearful, frustrating, debilitating, etc,  and of course all these feelings are a spiral of each feeling tightened real close to each other, at least that's what I picture in my head!

...Take those days... and take a step back, accept that those ARE the feelings you quite possibly might just feel for the rest of you day! 

...You have to ACCEPT THIS and maybe wallow in it if you need to (that is ok and VERY therapeutic, I've done it MORE than I can count by memory!)

OR maybe just pretty much say ...
                                    
           "You know what, Im throwin in the towel for this day!"

...Accept it and take that time for YOU to Just be.  Do something to turn it around Just for you...

                          ... Remind yourself that you still have the Mighty Power of Control.

(For me I get into my least uncomfortable spot on the couch and, of course struggle a bit before finding the "just right" movie....  Which then aids me to be taken away in an entertainment band-aid for a the rest of the day.)

                           
                          ..."Not every day has to be a good day, some days can just be..."

Getting Rid of the Little Buggers Through IV Anti-Biotic Treatment

 Before I start this, I just want to reiterate that I am not a doctor and have no medical background.  This is just meant to provide insight into my personal battle and spread awareness of Chronic Lyme Disease. I'm in no way suggesting any type of treatment or protocol. You should always consult your doctor for all medical matters and if you have Lyme you should consult a LLMD before beginning any treatment. 

Also a warning, pictures to some might be slightly graphic but again, meant to show the TRUTH of this disease and help spread awareness!!!

  I will never forget the night that I tested positive for Lyme, it was around 9pm and I was waiting on a call from an old friend when my LLMD called me right prior.  Earlier that month my Dr had sent me to Connecticut to get a culture done to test for Lyme infection.  This culture is not legal in NY, where I live, but I did not hesitate to travel and get the test done.  After 10 years of testing negative, my Dr gave me hope that this was pretty much the only test out there at the moment that can ACCURATELY diagnose you (I will touch on this subject another time).  Normally the culture takes about 6-8 weeks to grow, mine grew in a week and a half!  Pretty evident that I have it and it's been in my system for a very long time!

  

So, I have my diagnosis, what’s next?  Besides for the overwhelming feeling of shock, numbness, happiness, and being scared all rolled into one, that was my first immediate question.  My Dr said Anti-Biotic's...  We started off with Oral Anti-Biotics, slowly, each week upping the Mg's, with the addition of herbal microbial defenses to help kill the buggers and build my immune system all at once.  

This is just 1 of 2 bottles prescribed to be monthly, I was on approximately 6000mg's a day.

 

Every day I started to feel worse and worse, which is exactly what my dr warned me about.  The Herxheimer Reaction he said (which I will touch on in another post as well).  After almost 2 months of the oral abx plus herbals and no improvement, my dr. then said I would need to start IV treatment.  My case, which is in some degree mainly Chronic Neurological Lyme, prolonged IV anti-biotic treatment is considered beneficial.  (I am also on 3 different herbal anti-bio tics and a multitude of supplements.)

So here comes the point of this POST....

I just wanted to give you a bit of insight into this world of IV treatment.  

At first I was scared, scared of everything... the procedure for putting my mid-line in, the thought of having something foreign in me for months and taking care of it carefully as to not cause another infection on top of everything, not to mention the act of having an IV treatment daily, yada yada yada...

 I just want to let everyone or anyone who is reading this and is about to enter this IV world or is thinking about it that it is NOT as scary as it seems.

With that said here are some visuals that might be graphic, but hey, this is real and this is the point of this right?!

What it looked like the day I got my Mid-Line placed and I ran my first treatment..

What it looked like the next morning, of course I immediately became anxious about the blood I saw thinking, was it a blood clot, do I need to call and have them remove and replace it, etc.  This is completely normal and no concern for alarm!  Just an FYI to those who need it....

 What it looked like when the nurse took of the gauze hiding where the tube was inserted later that day, AGAIN COMPLETELY NORMAL!!

 Running my very first IV on my own without my amazing nurse with me!!! A success!

After getting the area wet from not covering it well enough, waiting while the emergency nurse had to come and clean and re-bandage, the evening of Fourth of July no less.

Side Note:  Holidays and Celebrations become arbitrary during this process.  This treatment and healing TRUMPS everything, the sooner you realize and accept this, the easier it will be throughout this process

This is NOW how I cover the area before I take my showers and detox baths and sauna's... with another waterproof covering over the taped area for extra covering under this cover!!  Better safe than sorry!  You can get this PICC line cover on Amazon.  PICC Line Waterproof Cover.  You can imagine how thrilled I am every time I have to take a bath or shower, emphasis on "have to" because if I had the choice I wouldn't at this point!

And lastly, along with your nurse coming to you constantly for help and cleaning and changing the area, you have a weekly blood draw.  This is very important for your Dr to monitor EVERYTHING and make sure supplements are given in case of any low levels of important nutrients.  For example, my Potassium was tested low my first week, but then dropped even lower by week three.  Low is around 3.6, I was at a 2.3!  So now I take prescribed high dosed Potassium to bring my levels up! :-)

 I have now been on IV for almost a month now and I have about 2 more months to go, but we wont know till I go for another culture in my 3rd month.  I feel sick most days and I'm in pain still, but I'm starting to have some "better hours" or "better minutes" which is a vast improvement!!!  :-)

IV therapy or antibiotics in general is not for everyone, but it's working for me and I am so very grateful!!

Feel free to like my page on facebook, A Taste Of Lyme

 Contact me for ANY questions through there or this blog, no question is a silly or stupid one! We are all going through this together and I am here for any type of support needed as many Lyme Warriors such as ourselves have been here for me.

How Do You Know You Have Lyme?

... when you have to force yourself to stay awake for the late-night slot delivery of your meds and IV/PICC needs for the week ..




A Taste Of Lyme

Lyme-Induced "Dark Side" Days

Sometimes the darkness is all-consuming...I do not want to take my supplements (I dare not skip my medicine), I do not want to detox, and I do not want to do anything to take care of myself. There are certain days that are so bad that the "I do not want to" turns into I simply cannot. I cannot take care of myself properly, much less watch television (books at this point are out of the question) or find any other type of distraction. Time seems to hold still at times and then move rapidly at others. I just stare at the ceiling and my body instinctively goes semi-comatose so that I am not fully aware of what is going on--I am just floating, unattached from the world, waiting for the herx or flare up to loosen its grip around my neck. 

  This is a perfect example of how my body feels pretty much all the time, but the "dark side" days are when it intensifies. 

 This is another visual of what my head feels like on these days, and the clamp gets tighter and tighter throughout the day.

 A few times it has gotten so bad that my body has become paralyzed and I feel this extraordinary pull to let go. I fight to hang on to consciousness due to fear, but I wonder what would happen if I were to let go. The feeling pulling me is so warm and calming, as if I were floating on water and holding on to a boat with one hand, but with every fiber of my being begging me to release.

 Those really bad days, when a herx has completely taken over my body and I do not know when I will be released--hours, days, weeks--the only thing I have found to do when things are this dire is to escape within myself. I am not sure if it is a good thing or a bad thing, but at that point I am forced to just listen to my body. I feel so incredibly fragile, so meek, that I physically and mentally escape within my self for protection and thus I become a temporary shell of my former self. During these times I do not want to talk to anyone or see anyone--I just need to be alone until it is safe to come out again. 

 The darkness far trumps any type of physical pain I have ever felt. For some reason it is a necessary Evil that comes with long-term treatment for Chronic Lyme Disease. 

 

All of this is hard for me to admit. I want to tell you that I am always strong; always optimistic. Continuously fighting and eternally positive in my outlook. But this disease attacks your brain and at times it feels like im drowning....

 

So to leave this on a positive note, I will reenforce Dory's theory on when Life gets you down....

 

 

Just keep swimming, eventually I (and you) will reach the surface!

 

“Let food be thy medicine and medicine be thy food” - Hippocrates

Supplements, More Supplements, Meds.... Oh My!

 When life hands you Lyme, you have to start taking medicine...and a lot of it. I stopped counting the number of pills I take a day because it was messing with my head and making it harder to take them. I have several of those plastic 'weekly' pill containers that are divided into 4 different times of the day.

 For each Lyme patient they are given a protocol by their dr or they have chosen to go their own way with their own herbal protocol.  What works for some, might not always work for most.  Lyme is tricky and our bodies are even trickier.  How we react to herbal supplements and meds can make or break a treatment so treatment takes time as we test and figure out what is right for us.

This is just some visuals of a typical morning regimen of all the supplements and medications I take... just in the morning!

 Besides prescription drugs, I take a lot of vitamins and herbal supplements to keep my body as healthy as possible and to help fight the Lyme (these were prescribed by my LLMD).

 The three herbal supplements here were also prescribed by my Dr.  I have to take 30 drops of each supplements with a full glass of water 3X a day.  Each supplement is geared to help build and support my immune system, which is shot from the Lyme bacteria attacking it.  They also are geared to

1.  Kill the various forms of Borrelia (the Lyme germ)
2.  Decrease and eliminate biofilms
3.  Treat dormant Lyme germs that are unresponsive to precriptive antibiotics
4.  Prevent Lyme disease relapse.

 Coconut Vinegar
is an excellent source for added important nutrients such as Potassium, the broad spectrum of B Vitamins, Vitamin C, etc.  It also is GREAT for digestive health which is the key to curing any chronic illness.  Therefor it is an added bonus for its fabulous ability to cleanse internally, providing a good portion to your detox regimen.

B-12 injections are a must for me since I was tested as one of the rare cases of lowest b-12 deficient reported in a while. I have to give myself an injection every morning, (which quickly got me over my phobia of needles!) B-12, or the injection form called Methylcobalamin, has been proven in studies to cure Bell's Palsy, regenerate nerves that are damaged, contribute to better sleep and much more. It can protect the myelin sheath that insulates nerve fibers and detox heavy metals. Methylcobalamin is used primarily in your liver, brain and nervous system, which is exactly where Lyme attacks you first.

Anyway,  I hope that this provides you with a little insight into the daily life of someone fighting Lyme. It truly is a full-time job!


 Please Note:

As you can see in some of my pictures, I have all the vitamins, supplements, and RXs turned to the side. I have chosen to disclose certain supplements and herbs, such as B-12 and Coconut vinegar because they are harmless and just a good source for anybody. The injections are prescribed, but daily pill form for the healthy are encouraged.  I want to remind everyone who reads this that I am not a doctor and have no medical background. I cannot safely disclose what ALL I take--it may be misconstrued as me giving medical advice. SO PLEASE be sure to talk to your doctor before you begin taking and vitamins or supplements, even if you don't have Lyme. 
This blog is purely anecdotal, meant to provide insight into my personal battle and spread awareness of Chronic Lyme Disease. In no way am I suggesting any type of treatment or protocol. You should always consult your doctor for all medical matters and if you have Lyme you should consult a LLMD before beginning any treatment.

My Morning Reflection

When I was a very young girl I spend much of my time with my great uncle Harold.  My father found it very important that I be aware of the world that he lead and the important music that not only surrounded our family but the whole world.  Harold to me was just my lovable, hilarious, and creative uncle who I looked forward to see as much as I could.  To the world he was the original folk manager.  Starting and managing artists such as pete Seeger/The weavers, Pete, Paul and Mary, Woody Guthrie and his family, Judy Collins, Ravi Shankar, Joan Baez, Just to name a few.
I remember hanging out in Pete Seeger's dressing room just before he was to go on stage and watch him prepare and he would always be humming this tune, it doesn't matter that I didn't understand the importance of the song back them or even how lucky I was to experience being there and watching one of the greats use it as a source of strength because I have the memory now and I use it when Im

in need, like today….

Understanding Lyme Disease

 "The treatment for Lyme Disease can take years to complete and that's after spending years to find a positive diagnosis for your troubles. The Lyme bacteria is not an ordinary invader that can be killed off with some antibiotics in 3 weeks unless it's caught early enough. The Lyme Bacteria is highly evolved in such a way that it can actually hide itself from your immune system. It's basically, as I refer to it, a wolf in sheep's clothing. It does this, from what I understand, by generating a biofilm around itself so the antibodies of your immune system can't detect it. This is the exact reason for inaccurate testing. So if your own immune system can't find these Spirochetes, how are some antibiotics going to? Not to mention the fact that the Lyme bacteria is called a Spirochete due to its spiral shape, which it takes full advantage of when it decides to drill itself into your tissue. The master of hide and seek. " ~


Understanding Lyme Disease

This is a recent interview that gives us valid truth and awareness.

Here is the article by Tula Karras..

Ticked OFF: Suffering from Lyme

While reading her story I could not help but constantly think, "This is MY story TOO!"

... maybe, some of you out there can relate and hopefully realize that there might be answers to your "unknown" symptoms as well.

Here is another article by Tula Karras which gives us 3 lessons she has learned in life as a Lymie...

Lessons from a Lyme Survivor

Now is Not Forever

From my experience, I have come to realize directly that these wise words from A. A. Milne are not only true, but they must be repeated on a daily basis.  Having a chronic illness, especially one like Lyme which literally effects your brain function, will try and break you down everyday.  Whether the pain has knocked you out for the day, your feeling alone and unsupported, your frustrated with the treatment or lack there of, or any other numerous reasons to get you down, take a breathe, a moment of breathing positivity and repeat these words.

The sad but true fact is that there is no "cure" for Lyme, BUT there is a "way".  A "way" to get back to being a healthy version of you, it just takes time and a lot of patience.  I have had more bad days in my life than I can even count for, so I must be strong because I'm still here, smiling and laughing on occasion. 

During this time of your fight, no matter what stage you are at, always remember that you ARE BRAVER, STRONGER, AND SMARTER than your mind is tricking you to believe.

With that said, its also important to know that:

Not everyday has to be a strong day, Some days it's okay to just be....

Finally Being Told It's Not All In Your Head (After 10 years...)

I have grown up spending my summers in Fire Island, NY, one of the most beautiful places but the deer over populate the people.  I started having my first symptom in 2004, age 21.  Almost 10 years of dozens of specialists, every year would be another symptom another "diagnosis."  and another prescription med that I would have to take which of course never helped.  This past year I went to the ER twice when finally I decided to see a  good friend of mine who works for a cardiologist.  She ran every test she possibly could.  She was alarmed that my ELISA test came back positive, but western blot came back negative.  Most Lyme illiterate doctors unfortunately rule Lyme as a diagnosis out if the western blot comes back negative, so that has been my case for over 10 years.  I was not going to the "right" doctors.  My friend then prompted me to go to a LLMD (Lyme Literate Doctor).  While waiting for my appointment I went to my Primary, who at this point in our appointments had stopped looking me in the eye when I came to her with symptoms and would just hand me referrals to psychiatrists.  I told her that I think I have Lyme and Id like to be tested, she immediately said that I probably don't have it and that the treatment is so severe I don't want to bother.  Unbelievable right?!?! Not even going to waste the time expressing the frustration I felt after that appointment, but needless to say I haven't gone back to her.  Eventually when I saw my LLMD, I went to three different labs to gets get blood drawn AND had a culture done in a different state (not legal in NY), the culture grew in a week and a half, pretty evident I have it!!! I have been on both oral and IV, now I am just on IV and herbal supplements.  So this is my story so far…

oh and I did call my primary up, I told her my lyme test came back positive and she said she wanted me to come in immediately.   To that I said, "Oh no, you don't understand, I will NEVER be coming back."

Breaking News of New Tick-Borne Illness

Seem fitting to start this blog with breaking news on a new tick borne Illness to help spread awareness

... as if Lyme and all the co-infections (that we know of) isn't enough!!!

Click below:

New Tick-Borne Illness