How do you begin a journal to describe 30 years of Lyme horror? I originally thought I would just list my symptoms, experiences, and meds of the day.
That would not be enough, you need background. Many of you will be familiar with much I have been through, because you or someone you love has been through it too.
I believe much of it will be comforting - in that no matter how much you've suffered, you will know you are not alone.
I will list over time my test results - these take up volumes - almost tomes.
I have 30 years of physicians guessing and poking and prodding and in the meantime not only allowing me to get worse but many of their treatments making me much worse.
I've literally faced death three times. I'll tell you about it when they come up chronologically.
In the beginning, I will be listing many of the treatments I've tried, some that have helped, some that haven't. I will list physicians and naturopaths that have I've seen. NOT by actual name but those of you in the lyme community will recognize who they are.
I will take you along on my Emotional Roller Coaster as I gain hope, and lose hope, and gain hope and lose hope. I know you understand. I really wish you didn't.
I plan on being brutally honest in my feelings and descriptions. If you are very sensitive you may not wish to keep coming back as I continue to share my life with you. Those of you who have been going through this for years-and expecially those who have gotten to Parasitetreatment-will have a better idea of the Monsters ruining our bodies and lives.
People Outside the Lyme community - the Non Lymies-cannot understand the monsters and the nightmares they cause.
Since I currently have Lyme Meningitis much of what I'm writing may seem to be a Flight of Ideas - It will come together- I assure you.
So, this is the plan. In every new post, I will share my history in chronological order. I will share tests results. Lastly, I will share what is happening to me on that day. I am also going to try to add the cost of so many years of missed diagnosis and treatment.
Sept 8, 2015 Mornings are bad for me. I wake up early to help my teenage son with school. He has Lyme also. He is doing fairly well but still needs help. I have to wake up an hour before I need to get out of bed to be able to slowly start stretching my legs and joints out so I don't fall upon standing. They are abnormally twitchy today. I can look at them and it looks like there is something crawling under my skin the way the muscles are contracting and releasing. Of course, there is something under my skin-Lyme disease. My legs are frightening me they way they keep giving out but the real scary part is the mystery sore spot on my brain.
I am going to Dr. S an LLMD in PA at the end of this month to see if he can tell me what is causing that spot. Many peole do not like him as a person, or his outdated treatment protocol, but I can say from experience he is very knowledgeable and probably my best bet for an answer.
Dr. K had said a year ago I had a tapeworm in my brain and three MRIs and a specialist at NIH later, I am finally convinced it is not that. I'm back to thinking it is the Lyme chewing on me. Be careful what you believe and who you put you faith into AND your money. We had put alot of hope in the Big Dr. K. AND I believe he really failed us. Plus the trip, supplements, and visits cost a fortune. Also, protocols are so complex it is almost impossible to follow time wise, logistically, and financially. I'm going to find one and post it to give you an idea. On the last visit, I was talking to many people in the office and they all had been going there for 3 to 5 years and were still BIG messes. That freaked me out. I know I am much worse now then when I started there. UGH!!!
Sept. 7, 2015 Today -Went to Allegheny Hospital ER in Pittsgurgh last night. Sat in lobby for 2 hours, then in back for 4 more. That would have been fine if they would have been helpfull at all. They were horrible. Lyme patients are used to being abused and ridiculed. I got that. Yet, i was very specific as to why I was there. I have an incredible sore spot on my brain, it feels like it is being cut and burns-please do whatever necessary to tell me what it is. I already had an MRI. The neurologist saw in the record, I had Lyme disease, and that I have had it for sometime, and very snarky said "And you still have it" as if of course that is not possible. Also, the bathroom for patients was disgusting. There was urine everywhere that urine shouldn't be. Since many of us have immune systems that do not work well, you know this causes us to panic. The room had a small dirty sheet tossed over the bed. The nurse pre-drew blood in case the Dr. needed it and pulled it through my Picc so hard that my heart hurt all night after that. Also she caused the insert site to bleed from pulling which upset the nurse who gives me my IVS NO HELP, FILTHY, RUDE and recommended i see three Drs. from their hospital. Just gave me numbers no actual referrals. I WILL be fighting the bill. I will add we went there because Allegheny used to be a good hospital. I think it is on its last leg from what I see from the ER. I would definitely add this is not a good place for Lyme patients. My opinion.
I came home more discouraged, more broke, and feeling so weak.
I woke up this morning depressed as hell. My eldest son called me and we talked for awhile. He decided he is going to try to help figure this out for me. I'm cool with that. I need help. I've gotten so much worse. He ended up making dinner for me and we went with my youngest son for a beautiful walk in a deer sanctuary. Yes, i see the irony. Why would someone with Lyme take a walk to look at deer. I guess its nice to keep an eye on one's enemies ; )
P.S. I hate to get my hopes up but I think Rocephin may be starting to work.. I can turn my head side to side without crying. The movement is much more natural.
Today I would like to post some interssting labs like I promised I would do from time to time. So please see below.
Sept. 6, 2015
Today -Went to hospital for IV today. Running a fever. Nurse asked me again about seeing a different Dr. My friend is trying to get ahold of an infectious disease Dr. to see me today. So far no luck. If she doesn't call back my sister is driving me to Allegheny hospital in Pittsburgh to go through the ER for help. Legs getting weaker and are on fire with burning pain. Brain still feeling like its being burnt and bitten. I'm living a nightmare. This is all I can write today. I want to keep getting the word out there what hell we live in. Having a hard time talking. I am doing Rocephin, 2 gms, four days a week. It is not working. The twice a day seemed to help. Why do Drs. Change things when they are working?
Sept. 5, 2015 Today -I almost didn't write today. It has been one of those days. I had to go to the hospital this morning to get Iv antibiotics and it was all I could do to muster my strength to get there. The nurse asked me what was wrong and I told her I couldn't feel half my face and how weak my legs were. She and the other nurse told me basically I needed bettter care and a better Dr. How come we have to be care beggars??? We aren't care beggars when we get the bills.
I said that would be great, find me someone. - That was sarcasm. Well, I think they may have. The one nurse called an infectious disease Dr. while I was there and talked to her. My primary has to call her on Tuesday to consult but I pray it amounts to something. I hate to get my hopes up since I've made that mistake before. The nurses spoke highly of this woman so maybe. She is not a listed or known LLMD. My brain is killing me and feels like its being cut. It is frightening. Walking around with menningitis is a crazy way to live. It is twilight zone stuff. You think we'd be sequestered in a hospital with every effort being made to make you comfortable and you certainly are not. They did more for TB patients in sanitoriums than they do for us. Medical care in the U.S. has truly taken a step backward. My mother was recently in the hospital, as you know from reading, and she said they did not help her wash one time. She told me in the 50's, 60's and 70's they would come in and help you wash and change your sheets everyday. Also, the rooms were kept clean. We wallow in hospital filth and wonder why MRSA and other diseases spread. Isn't it irony,that everyone knows that hospitals are dangerous places now, where you catch diseases and have to have an advocate to get decent care and not come out more injured? Greed and Apathy should really be names of hospitals. P.S. My primary said he was going to do some more research over the weekend. I guess I'm not getting the antibiotics according to Burrascano's guidelines like I thought. I was really hoping for some relief.
No history today-too sick
Sept 4, 2015
Going to Ohio State University in Columbus was a huge undertaking for me. For me, it was the equivalent of Oxford in England. It was so overwhelming. Being in a car was over - stimulating for me, so I just wanted to fall asleep. Finding my way to my classes and around campus was a herculian task. I remember being downtown one day looking at a building I needed to be at in the distance and being so confused I could not find it. Again, like so much of my life was going to be, I was just trying to survive when other people were out having fun. I cannot say college was fun for me but I felt blessed to be there. I was an excellent student and took my studies seriously. I was tired and anxious a great deal with few friends. I avoided people I knew because - as many of you will understand - talking can be exhausting. What should have been one of the greatest times of my life - wasn't. OUR LIVES are robbed from us. Yes, we are still breathing, but the very things that give life meaning are choked from us daily as we make this great effort just to physically stay alive. It is a cruel disease.
I was able to get a job as an Asst. to a professor in the psych dept. and for me it was as great an honor as being elected to a high office. I was thrilled. I wanted to learn everything I could so that no one else would have to suffer like I was suffering. Remember, I did not find out till years later I had Lyme disease. I just thought I had mental issues brought on from an MMR Vaccination.
This is when I learned how BADLY people with mental issues are treated. Not that this is anything new in our society. History speaks loudly on this topic. I had several enlightening moments while trying to seek treatment. I went to the local mental health center and to the Ohio State Campus student care center.
Testing during this period - I do not have the official records but here is what was done. I had an MMPI psych evaluation done by a woman student interning at the Mental Health Center. Serious waste of time and abuse of other peoples time. I was ill and they gave me a student who never even attempted to help. The Dr. at the student clinic ran a blood sugar test which was normal and more enlightening - a test for EBV. I had a mouth full of what looked like cottage cheese - which I now know was severe thrush. I was positive for Mono but no treatment was offered. I was told to let it run its course. I walked around shaking with weakness and low fever for many weeks.
Today -Woke up this morning with the horrendousinternal tension, where you just want to tear at your own skin. My muscles are way to tight. They have been doing this since I started my decline at the beginning of the summer. I took extra magnesium hoping it helps some. This disease is incredible. When you think things can't get any worse, they do. When you think it has to be something else and it can't possibly be Lyme disease causing this many symptoms, it usually is. My legs are really weak this morning. This scares me because this just started this summer and I haven't had this in 30 years of hell. We are doing pulsed 4 days a week of IV rocephin and it is not enough. When I was in the hospital, I was getting it every 12 hours. It is now just once for four days. My Drs. office returned my call last night. They are going to try to figure out how to switch to 2x a day - 4 days a week. I thought we were going with what Dr. B recommended in his guidelines and then somehow things switched when I left the hospital. Hopefully they will switch back today.
It is all so complicated.
People with other diseases do not have to educate their Drs. on treatment guideline, and figure out how to order picc line patches they aren't allergic to themselves, or how to order iv tubing, saline flushes, heparin flushes, etc.
BYOD- Be your own Doctor and BYOHI - Be your own home infusion company.
We are the sickest of the sick - with many times the worst brain fog - and yet we have to jump through hoops to find Drs. to treat us, and get the treatment we need all while being to ill to work.
Today my dear husband will drive me to the hospital to get an IV and I will be able to walk better. While there, we will pick up my mother who is most likely being discharged today.
I got the orders yesterday for the CD 57 test. I plan on using this as a beacon of hope in treatment. I need to find a Labcorp draw station and get that done hopefully this weekend. I plan on testing again in four months.
Sept 3, 2015
I made it through the 1986-87 year with lots of struggles and little joy. I was confused alot and driving a car was difficult for me. I got lost easily even though I knew my way and would have to follow the same paths to and from work and school. I managed to do fairly well my freshman year, and I immersed myself in my studies to distract from my mental agony. It is important to note here, that early on in my Lyme struggle most of my symptoms were mental, although I was exhausted all the time and carried viruses. Things I know now are linked to Lyme but then didn't have a clue. I continued to have panic attacks and depression, and my counselor wanted to put me on anti-depressants but my mother was against it. IGNORANCE causes a great deal of pain. So does poverty. I think the refusal to get me medicine was a combination of ignorance and not being able to pay for it. I know many of you can fervently agree with this statement. I was given nothing for the depression or the anxiety and it was crippling. I am blowing my own horn here-and you are all welcome to join me- because it was only through the indomitible human spirit that I survived that point in my life. Death would have been welcome.
I had a wonderful young man in my life-I really to this day do not know why he stuck around but God bless him for that-and he helped me through a period when otherwise I think I really would not have made it. We were both accepted to Ohio State for the next year and that's when the useless testing would begin. It would not be to decades later that I would get a real answer. But there is much to tell before that happens.
No testing during this period - Don't be impatient I have many interesting tests to share
Today - My mother went into the hospital last night. She has been trying to help me since I got out of the hospital and now she's in. This is when you truly feel worthless. My Dad dropped off food she had laid out to cook. He wants me to make dinner. Wish me luck because I barely feel as if I can stand. I spoke to my mother when she was on her way there and she said "Take care of yourself and I said take care of yourself" This has much more meaning than you may know. Whenever my mother has been truly ill in the past or went to the Dr or the hospital; I was there to oversee treatment and take care of her. When I was ill, she would not come to the hospital but she would come to my house and take care of my family and me. Saying that last night was almost admitting that we have reached a point where we can no longer take care of each other. Its a dark day.
My mother has Lyme disease also. It is why I'm fairly certain I was born with it. She did not find out until I took her to the Dr. and got her tested. She has lived with agonizing fibromyalgia- that was really Lyme disease for decades. She has been treated badly and made fun of over the years by family members because of it. They have said the usual. She's not really sick, she's a drug addict, etc. etc. She is really sick and she's certainly not a drug addict. I have one sister who went as far as to go through her cabinets searching for drugs and wanted to do a drug intervention. She really hurt my mother as ignorance always does. People make this illness much worse. I know it sounds extreme-but you almost wish you had cancer or some other disease people know how devasting it can be- then that wouldn't act like such *&$#%^^. You know what I mean!
I'm lying here today on the bed writing to you and it is raining and I want to cut my legs off because of the pain. It's awful when you love and hate a body part at the same time. Enough for today -we'll talk tomorrow
So back to 1986 when I first became ill. The immunization, the MMR, had ruined my immune system and I was suffering from serious fungal overgrowth, crushing fatigue, panic attacks, and depression. No one in our area thought of Lyme Disease at that time, everyone was afraid of Rocky Mountain fever from ticks, not Lyme disease. Also, if the mind was involved that was the beginning and the end. Much like today, you were just crazy. So I prior energetic girl, that belonged to many things and was a good student, dropped out of everything and almost didn't graduate becuas she missed so much school. Luckily, there was no graduation test back then and the school was afraid of being sued so they just let me graduate. What I once looked forward to, going to school, was now dreaded. Friends abandoned me, I couldn't concentrate, I was having very strange thoughts and was sooo anxious all the time. I couldn't get my drivers license and I became a social pariah.
There was no searching for further answers, we were poor and if I were going to get help I would be doing it on my own. I struggled through life. The only bright spot was that I had one great friend, that made life bearable and that was always there for me. I truly think I would have died without this person. I know my life would have been much,much worse. One person can make all the difference in the world. I graduated from high school, got a job at a local shoe store, and started taking classes at a local college. I cried alot and life had no real joy or meaning but I just kept going.
I sought help at a local mental health center. I received counseling which was of course no help whatsoever. My problem wasn't psychological it was physical. I didn't know that yet.
No Labs to report during this time.
Today - Well, I thought I had found a really good drug. When I was in the hospital a little over a week ago I was started on Neurotonin. I have searing pain on the front of my thighs, all down my spine, and on the top of my brain. It feels alot like someone dumped acid on me. This is relatively new. I never had this kind of pain before in all my 30 years.
It has only been the last couple of months. I blame Dr. K for this. You go to see him for Lyme treatment but truth be known Lyme treatment is not his true focus now. It is not time for that story yet, but I will get to it in my history. So I thought Neurotonin was a wonder drug until yesterday. I woke up with that horrible, incredible internal tension we get where we just want to scream and we feel like we are losing our minds. Sound familiar??? My vision was blurred - more than my usual and then came the dreaded panic attack. I had not had one in years. If you are familiar with the painting Scream with the weird looking guy holding his face -THAT'S how I woke up. THEN, my blood pressure went to 180/100. My blood pressure is normally 90/60 OR lower.
So much for neurotonin.
Now I'm worried about the pain. It was working for the pain. The other pain meds, not so much. My dear husband called and left a message at my Drs. office to try to get something different. Noone called back and they are out of the office today. Pretty sure my Dr. is burnt out on me. Nice man, but only human. Lying here praying the pain stays at bay today.
So, fairly sure hormones are playing a big role in my decline, the big ones that keep you sick -Thyroid and Adrenals and Pituitary. I made the appt. with new Dr. that reads well on paper. The soonest appt. is November 24,2015. That was the soonest. When they give me crazy dates like that I always think of the recording -If this was a true emergency - you would be notified As I lie here, fairly sure I am dying - not just my opinion, did a stint in hospital recently with some bad numbers, I laugh at the thought of trying to make it to Nov.24th, then having tests run, then waiting for follow up appt. I'll probably know something in January. Seriously, I should call and make my follow up appt today. I think I'm on to something - feel free to use it !!!
Goal for today - Not to die and try to put on a good show for my family.
Sept 1, 2015
My history started in 1986. I was in high school and enjoying life. I could never have imagined that all joy would soon be sucked out of it. I could never have imagined that all my energy would be sapped. I could never imagine my once sharp mind would soon be tortured with confusion, fog, and fear.
I was a cheerleader. I was in the band. I was in clubs. I had friends. That was all about to come to a screeching halt. The school sent home a note that all students had to show that they had an MMR booster. I had not. They said you would not be allowed to continue your senior year without one. They lied but that is a different story. I had had bad reactions to vaccinations as a child so I was not gung ho to have one but they threatened me and since I rarely got ill what the heck.
I got the shot. I felt abnormally tired that day but expected that. The fatigue continued to only get worse as did the yeast flare. It hit my brain quickly with a panic attack. My first ever. It was soul blackening. I literally saw everything with a hint of red and this went on for long time. My parents took me to a neurologist who diagnosed me with what else but DEPRESSION. It was in the 80's and still is today the catch all for lazy incompetent Drs.
He did also add-ALMOST as a side not- that I was suffering from encephalitis on my occipital lobe. My parents are ignorant people when it comes to medcine so the powerful meaning of that went right over their heads.
I think back now knowing what I know and the blaring/glaring incompetence is mind blowing. Unfortuantely again, I know many of my readers will understand. I was then taken to the family physician who confirmed the depression. I promised to share my actual records- so I have copies of them for you from way back 1986. Not easy to get-my parents didn;t save anything
I want this to be real and blatantly in your face honest so it can help both those of us who have been sick for decades and those who are new.
I want to add what else started back in 1986. The blaming of the victim. Many of you will be familiar with this. What did you do to cause your own illness? How are you to blame? What didn't you do to prevent it????
Immediately after I became ill the blame started - She must have done drugs-she must have took speed. This was from family members!!! As you know when you are taken to a hospital they test you for drug use-and I assure you I was no drug user but that didn't stop the blame. Somehow people can't handle or accept people become ill and its not their own fault. People like to blame the ill. I've lost many family members to this but I'll expand on this later.
Before I list the records, I will post my Today. Today -I was supposed to see an endocrinologist today. My sister found him and made the appt. I have been very ill lately and she feels its from thyroid/adrenal problems. I agree, I feel like my adrenals are failing Long story short, I concelled the appt. The Dr. didn't specialize in anything like adrenal fatigue or hashimot's or anything that may be helpful. So I will be making a new appt. with a better Dr. My sister is now dedicated to learning about Lyme and its associated diseases, but she's a newbie and does not understand first, how badly we can be treated by Drs. and second how ignorant and unmotivated many Drs. are. You know new Drs. appts are a crap shoot so I found one that sounds ok and I will roll the dice and make the appt.
My heart is all over the place today and my brain is truly fogged as I write this. I am commited to writing this every day so if it isn't always coherent- well I'm sure you will understand.
1986 Physician Notes -as best as I can read very poorlyy written
17 year old senior school year 121 lbs been complaining of peculiar hot feeling in head Feels weak Can't concentrate and read
CT No insurance will get later if needed
Treat as Depression
THAT'S IT THAT WAS ALL THEY WROTE I WAS DEPRESSED AND THEY WOULD DRUG ME- Years of missed life are to follow
August 31, 2015 Today - My heart is bothering me. It feels weak. I was in the hospital last week and the cardiologist suggested I have a pace maker installed. I'm not so sure its worth it to me. I have to really think about it.
I have a picc line in my left arm and will be going to the hospital later today to get an IV infusion of Rocephin. Its my 5th picc line. I told myself I would never have another picc line installed. I lied to myself.
I have Lyme Meningitis so my brain feels like it is being cut on top and in the back and I keep getting confused. I can't even drive myself to the hospital - pathetic and scary.
I started my day with Thyroid med, Neurotonin, and prescription Magnesium.
I've been up several hours so its time for me to rest before I go to the hospital.