HERE IS SOME OF MY STORY...
HERE IN THIS PICTURE...I'M HAVING A GOOD DAY BUT, THEY ARE FEW AND FAR BETWEEN. :/ THIS IS WHO I REALLY AM..A SMILING, HAPPY PERSON THAT DIDN'T EVER LET ANYTHING SLOW HER DOWN OR BOTHER HER. ME...A MOTHER, WIFE AND DAUGHTER, THAT DOESN'T SEEM TO HAVE MUCH OF A LIFE ANYMORE BEING STUCK MOSTLY IN BED. LYME HAS TAKEN JUST ABOUT ALL OF MY LIFE AWAY FROM ME AND MY NECK & BACK PROBLEMS, HAVE ONLY BEEN INTENSIFIED. :/
I'M AN ARTIST, VOCALIST AND MUSICIAN, BUT THOSE THINGS SEEMS TO BE PART OF THE PAST NOW. I CAN'T DO THEM ANYMORE, NOT STRONG ENOUGH RIGHT NOW. I JUST LAY IN BED MOST DAYS, PRAYING THAT I WILL FINE AN ANSWER...TO HOW, I WILL GET MY LIFE BACK!! THAT I WILL FIND A WAY, TO GET THIS LATE STAGE..NEUROLOGICAL LYME OUT OF ME AND MY SPINAL PROBLEMS CORRECTED TO ENJOY LIFE ONCE MORE!!!
I WAS ALWAYS DOING SOMETHING AND LOVED TO WORK, LIKE SINGING IN MUSICALS, PERFORMING WITH FAMILY AND FRIENDS TOGETHER AND LOOKING FORWARD TO SO MUCH MORE OUT OF LIFE, BUT WHEN I CONTRACTED LYME, ALL OF THAT WAS TAKEN AWAY.
I DISAPPEARED FROM THE WORLD AND SEEMED LIKE I HAD BECOME A HERMIT, BUT WAS FAR FROM WANTING TO BE AWAY FROM MY FAMILY AND FRIENDS.
AFTER PULLING A TICK OFF OF ME IN '08, MY LIFE COMPLETELY CHANGED. UNDERNEATH THAT EXTERIOR OF SMILES...IS A VERY PAINFUL PERSON, WHO IS JUST STRIVING TO GET WELL AND LIVE LIFE AGAIN!!
To explain to a few of you who don't understand, that those of us with Lyme have TERRIBLE MEMORY problems. Short-term MEMORY that is and I definitely have memory problems that's really severe at times. IF anything interrupts my train of thought, WHILE I'M TRYING TO MAKE A POINT, IT IS JUST LOST AND I STAND THERE TRYING TO FIGURE OUT, WHAT IN THE WORLD WE WERE DISCUSSING. I will forget everything that I wanted to say too. Talk about frustrating. Whatever, I was thinking is gone. Seriously, I have a three second rule. If I don't get what needs to be said...out, I've lost it completely and can't retrieve it. IT'S like I have ADHD..or something, BUT IT IS MUCH WORSE. Really it is more like ALZHEIMER'S OR DEMENTIA and I'm too young for that.
Just wanted to let you know this about the memory, before you read my story. That's just in case I repeat anything more than once. I will try to read over it and correct any repetitions. :o
"WE ALL PUT ON A BRAVE FACE IN FRONT OF OTHERS and that is a hard thing to do, BUT WHEN WE ARE ALONE..then, we can let the pain out. REALITY SETS IN."
IT TOOK YEARS FOR IT TO GROW & BE FOUND...LYME!!! ONLY FOUND BY A LYME LITERATE DOC. BECAUSE ALL OF THE NEUROLOGIST, ONLY RUN 2 TEST OUT OF 6 AND THERE IS OVER 300 DIFFERENT STRAINS OF LYME. THEY WILL NEVER GET MANY POSITIVE BLOOD RESULTS, BY DOING IT THAT WAY AND IT IS SO WRONG TO THE PATIENTS! I SUFFERED 4 MORE YEARS BECAUSE OF IT. :o
MY BLOOD WORK HAD TO BE SENT TO IGENEX, BEFORE WE GOT ANSWERS TO MY LYME QUESTIONS!! SINCE, IT TOOK YEARS TO BE DIAGNOSED CORRECTLY AND IT WAS LEFT TO GROW OUT OF CONTROL. IT IS GOING TO TAKE TIME, FOR ME TO BE ME AGAIN. BEING DX'D WITH LYME DISEASE, BARTONELLA. & BABESIA, WHAT AM I TO DO?! THE BEST I CAN, BUT THE GOOD LORD WILL SEE ME THROUGH!!
THIS IS WHAT I FOUND THAT BROUGHT MY LYME TO LIGHT OR LIFE:
People who exhibit healthy immune function generally do not suffer from the worse aspects of Lyme. My immune function must not have been too good, for when I needed some teeth work done, it made my LYME come to life...or WAY worse.
I got sick because I had teeth extracted and had some other work. Root canals, as well as improper extractions, weaken your immune competency. Tooth extractions or Root Canals, improperly done, cause problems where the Lyme infiltrate the system. LYME infiltrates YOUR TEETH and MOUTH!! Leaving you with NEVER being able to completely eradicate it from your system!! IT EMBEDS ITSELF IN YOUR TEETH!!! :o
Another words, if my teeth had been properly addressed in the first place, my immune function would have been sufficient to withstand the Lyme onslaught, but having teeth extracted or dong any root canal improperly had caused the Lyme to reek havoc in my system!! Now, I'm left with teeth problems and still dealing with the Lyme too!! >:o
We must find a way to keep the Lyme, from becoming a problem!! To do that, we must KEEP our teeth receiving proper care with a Holistic Dentist, who knows @ the complexities of Lyme. We must also, keep our immune system at par!! But, I'd rather have a Birdie!! :/
Link to the Holistic Doc, who knows his stuff @ teeth & dealing with Lyme:
LATE STAGE NEUROLOGICAL LYME DISEASE AND WHAT IT'S CO-INFECTIONS, DO TO YOU...
No one realizes what Late stage neurological LYME really is...and what it does to you, unless they have it. IT takes all of you and all the while, you are helplessly watching your life come to a screeching halt. IF I WROTE DOWN ALL OF THE SYMPTOMS, YOU COULD HARDLY BELIEVE THAT SOMEONE COULD DEAL WITH IT ALL. :/
Your not the same person, as you once were before and all that you knew your life to be...seems, will never be again. I've had to completely put my dreams on the back burner and be completely stuck in my house. I just pray that one day, I'll get to pursue them once again. :/
You can't move on with you life, until you get THAT LYME UNDER CONTROL. I WANT IT OUT and THAT SEEMS UTTERLY IMPOSSIBLE!!! But, with a positive attitude it helps to move on and at least, hope for a better future.
IT'S definitely a humbling experience and does make you appreciate every GOOD moment that you get of life. Every time that I can smile or not feel pain, I'm grateful. :)
First...I want to address those who have people in their life, who are suffering from Lyme or are possibly showing signs of having the disease. Please be considerate and find a LLMD, to get a diagnosis. Or..if, already dx'd with Lyme, GET to working on some kind of treatment. It is very helpful to just TRY to understand, what they are dealing with on the inside. You may not be able to see THAT PAIN, but IT is SOOOO REAL and indescribably painful!! IT IS JUST HARD TO EXPERIENCE ON IT'S OWN, BESIDES NO ONE LISTENING TO OR BELIEVING IN THEM!! AND...You could SAVE their LIFE!!
IT just hurts me so much, when someone doesn't listen or understand!!
Sometimes it gets me so angry inside, from those suffering and NOT being heard or believed by loved ones or others!! IT is a battle..a daily battle, that seems to be intensifying each day and if, not treated early...could be left to grow out of control and even KILL a person.
At times, I don't know what to do, but to put my feelings down and to keep on fighting. It does seem therapeutic to write about it and hopefully, this will help others in some way. I pray that it does. :)
I can't help that I'm not active like I used to be...or that I can't move around or help much. I LOVE to work and my whole life, I've been a worker. That is...until I got LYME. THE LYME IS IN MY BACK AND CNS-Central Nervous System, which makes it ever more difficult for me...to just get out of bed. IT is also in my Brain, which is called neurotoxity. It can possibly get into the HEART, but I'm praying about that and hopefully, IT isn't there yet! I hope by then, to be able to be completely treated for it!! That's when it becomes deadly, when it gets into the heart. People have actually died with Lyme. Yes..IT has KILLED many, but if you catch it early...YOU could be alright!!
I must say something about the one thing, that has helped me tremendously, I've been so blessed to have a wonderful husband and family, who does listen, care and stand beside me. I thank GOD for them everyday!!
Also, I've found essential oils, that God gave to us and THEY are WONDERFUL!! I put them in EACH of my baths. The oils...I mix with Epsom Salts, so that they can diffuse with the salts and work better. IT really has made a difference in my life!!! SOOO GRATEFUL!!! I know that without them, I would have been MUCH worse!! :o
Tired and all from me today, for the computer screen looks like it is moving and need to stop, but got a lot said. Maybe, tomorrow I'll be able to add the symptoms. That's a maybe...
LETTER I WROTE TO A NEUROSURGEON, IN HOPES OF AT LEAST, GETTING MY BACK STRAIGHTENED OUT. My name is Karen and been having Migraines & neck/back pain for the past 10 years. Dx'd with a T3-T4 compressed fracture, a C2 scerlotic lesion and T8-T8 protrusion. Also, herniations of T8-T11 and was told by a Hospital visit that I had Cauda Equina, but nothing done about it. I take a lot of pain and just a stronger person than, people give me credit for.
I had an ACD & F spinal diskectomy of C5-C6 done, back in '06. I have an AVM(left cerebral hemisphere), Chiari Malformation(over deficits-with being 6.5mm). I've had sinus/allergy issues, since I was a teenager, but received allergy shots for 14 years. Oh, also was in a Car accident back in '95, where I was hit hard on the top of my head and always have a sore spot right where I was hit. The headache seems to stem from there too. I'm a mess.
Also, I've been dx'd with Lyme disease from my blood work being sent to Igenex in California and do have Adrenal Insufficiency that's being treated, by Endocrinologist in Memphis.(since '12) First, he thought I had Addison's disease and was treated for that for 2 years, but later it turned out to be because I received so many Corticosteroid shots for my neck/back pain, that caused it. And, I'm sure a bunch of stress helped it along.
How, I retrieved your information was by my husband, who is a student of one of your patients Paulette Parker. She is also a long-time friend of mine. I've heard only good things about you and that you are a very nice guy and great doc. I've seen some docs from Memphis, but not for the Migraines and they won't do anything for my back. My NL says that all 5 layers area affected and don't want to have to take these strong medications forever or live my life in bed. I'm just missing so much of my kids life. I can't stand over 5-10 or my legs will give way and I have balance issues.
I've been having terrible Migraines or some kind of tension headaches, for the past 4 yrs., but here lately have been intensifying. They don't want to seem to go away, but strangely enough having a BM does give it some kind of relief and don't understand why that is. They spike and are very painful and can completely go away for a short while, then come on strong again. They also, seem to have some kind of connection with my neck and the pain in my neck is like the headache is stemming from there. My head has all of these sore spots. The pain is also over my forehead, temples and bridge of my nose and behind my eyes.
I've had 3 ultrasounds of my neck, to check my thyroid and am hyperthyroid too. When, they run the ultrasound, all they would find is my that my muscles are tightening up.
I don't believe it is sinus, but can't tell. Here lately, it seems like it is circulatory because after I take an Aspirin, it can go away for a while. I've had them so bad in the past that I would get nauseated, dizzy and light-headed and couldn't stand any kind of light. I will have to stay in a dark room when they come on, but the ones that I've had the past two weeks straight, have not had those symptoms. They seem different. The pain is constant behind my eyes.
I do have allergies, but take medicine for that each day. Given Zyrtec & the Flucticasone nasal spray for it and take it everyday. I don't miss a dose, for I'm afraid of getting one.
I do believe that the back & neck issues could be the culprit, but not sure and only want so badly to find a solution. I deal with horrible leg pain too, especially under the knee and calf, but it can cover all of both of my legs down to the bottom of my feet. The pain is a sharp joint-muscle pain, that never goes away and can be strong in intensity. I was struck by a nerve block back in '06 and ever since had problems. Thinking that the cauda equina could have something to do with it. My legs pulsate, jerk and vibrate all the time and I have to run my electric bed, just to trick my mind into not feeling or thinking of it..
Have to take such strong medication and so tired of it. I want to be pill-free and get rid of this Fentanyl patch, one of these days if possible and live a normal productive life. Praying that someone could fix me.
I'll find a way, to come see you. I've got to get my life back on track. I'm a driven and love to work, but can't do much of anything anymore.
Thank you for listening. God Bless, Karen-suffering in Arkansas