I'm new to this forum and thank God I can finally type to someone(s) that will understand what I'm saying.
As in the title, it doesn't even matter if anyone reads this, I just have to get it out so thank you for being here.
I was bitten 4 years ago clearing brush on our just purchased retirement property. What should have been the start of much happiness has instead been the beginning of gradually increasing misery. Pretty much I asked for it, going into the brush wearing sandals and shorts. Dumb, dumber and dumbest. Never even entered my mind what I was risking. The only good thing is my youngest daughter was helping me and she seems to not have gotten Lyme, so thanks be to God for that one.
So, got bit with no clue of being bit. Then came neck pain, muscle aches, chills and hot flashes (blamed on working too hard and menopause.) I remember driving to the local Wal-Mart to pick up some things and my then teenage daughter reading my shopping list " heating pad, ibuprofen, epsom salts..." and said "Mom, this is a list for a sick person". We shared a good laugh. Ha ha.
Woke up to go to work a few days later (used to be a night shift RN in a prison hospital) and had a 104 fever. Spent a week or so not sleeping, sitting in a chair crying and aching with horrible fatigue and having NO CLUE what was the matter with me. The old brain was not thinking 'tick borne illness' whatsoever. Then I broke out in a rash of round red hives that were about
silver dollar sized but no bulls-eye. I had many of them covering my torso and chest and legs. Thought I had maybe developed an allergy to ibuprofen since I had been eating them non stop for the aches and pains.
Now the neck stiffness set in so horribly I couldn't hardly stand it. Back and forth to my chiropractor day after day. Laying on the table crying while he tried to help my stiff neck to no avail.
Went to the ER to show them my rash and remembered that I thought I had been bitten by a spider on my right hip. ER MD sent me home with a diagnosis of 'red spots' but he wrote it in latin as 'erythema migrans' so it sounded a lot better. He entirely disregarded my story of maybe a spider bite and said to use ibuprofen. Thanks dude, I came in here telling you I had red spots and had been eating motrin non-stop and you send me away telling me I have red spots (in latin) and to eat motrin. So awesome.
Anyway, the visits to the chiro continued. One day I (crying) showed him my red (and now starting to bulls-eye) welts, saying "look at this rash". This is how stupid I am: 30+ year Registered Nurse and I am connecting no dots whatsoever about
my objective symptoms. He, takes one look and says "you better get tested for Lyme disease right away". I was dumbfounded and could only reply "you think?" Then it clicked and I thought "oh God, please not that" but it was like I already knew the truth. I had it.
To the clinic and the very nice nurse practitioner and the blood was drawn and an Rx for doxy x 30 days given.
Did some fast internet reading and decided 30 days wasn't at all enough as the stories about
chronic lyme were horrifying and THAT WAS NOT GOING TO BE ME. The NP called me back to tell me the initial test was positive and I should come in. When I got there she said she'd been reading about
Lyme and it sounded really bad and said "whatever you want to do, we'll do".
Second test came back positive with bands that I can't remember right now.
Back then: I felt all in charge and empowered (and arrogant) and confident that 60 days of doxy would MORE than kill it. I would DODGE THE BULLET! No mainstream 10 days of doxy for me! Haha! Stupid mainstream medicine. I cast a withering glance in your direction and snort at your ignorance.
Now: I snort at MY ignorance and arrogance in totally underestimating this disease. Oh, how I wince at the memories of telling people "I had Lyme disease, you know. And it took almost 2 months of antibiotics to cure it. That is really a dangerous disease and there was NO WAY I was going to become a chronic lyme person so I insisted".... blahdeblahdeblah. (Shut up lady. You don't know what you're talking about
Okay, but things got better for awhile and I knew I was okay and back to my regular scheduled programming for the next 4 years.
What's that shooting electric sensation down my right forearm that causes me to howl in pain and surprise? Must be resting on my elbow too much when I'm on the computer.
Why are my thumbs getting so sore and crampy? Has to be the repetitive mouse usage. Gee hope I don't have to get carpal tunnel surgery!
What is going on with my perfect 20/20 vision and why are things so blurry? Oh, the joys of getting older!
Why is this unnerving crawling sensation happening on the back of my neck? Over and over I reach back to find the itchy shirt tag or bug and there never is one. Weird.
Word search. Brain farts. I used to be a spelling bee champ, why am I having so much difficulty spelling lately? Boy am I ever getting old!
Hot flashes resume during a camping trip. Flu? Menopause?
Sleep starts to deteriorate and more hot flashes. Darn this menopause.
Is that arthritis in my left hip and why does it take me longer and longer to be able to walk properly without shuffling after I first stand up? Darn this getting older business!
Somewhere deep in my brain was this little dim sign blinking: * lyme disease*lyme disease*chronic lyme disease*. (But no, thank you, I got rid of that)
Incurred a dog bite on the finger requiring antibiotics and lo! Hot flashes are gone and sleep returns to normal. **Lyme Disease**Lyme Disease**Chronic Lyme disease**. (Ignore it and it'll get the hint because I DON'T HAVE THAT I GOT RID OF IT. Please God I did get rid of it?)
Increasingly I seemed to be losing the ability to deal with my job of 17 years. Things that were a fact of life or the usual irritations and challenges began to vex and worry me causing internal responses that can only be blamed on JOB BURNOUT. Saying that I was increasingly apathetic much of the time wouldn't be a lie. I distinctly remember the evening nurse giving me shift report and I could not really understand what she was saying nor did I care one bit about
it. Not a good state to be in when you are the only RN in the building with 200 inmates prone to self abuse or worse. Gradual but continual decompensation ultimately led me to find myself talking myself into quitting via email "effective today", 18 MONTHS BEFORE I COULD HAVE LEGALLY RETIRED. (Inconsiderate? Check. Unprofessional? Check. Reputation damaged? Check. Bridges burned? Check. No more checks? Check.)
I knew that I was so BURNT OUT (Actually crazy sick with neurolyme? Check.) that I was no longer safe to work there and could. literally. not. force. myself. through. the. door. one. more. time.
So quitting should make things much better! Ha. Ha.
Had I been thinking straight or had I had a husband that was at all inclined to pay attention to what was happening to his wife right in front of his eyes and speak up about
it, or heaven forbid take the role of a concerned and loving protector and helper for one who clearly was not behaving normally, I could have gone out on disability insurance and would still be getting paid instead of what we have which is a dwindling bank account until my retirement checks start in 5 months. (DH has been out on early retirement after spinal fusion 8 years ago and his check is not enough but thank goodness we do have some health insurance still.) But anyway, I wasn't thinking straight and all he said was "quit then if you can't stand the place, it'll be fine".
So, January of 2015 arrived and with it came chills and that old crushing fatigue and the growing unhappy awareness that I just may not have been cured of lyme after all and I just might have a real problem with my physical health. So lots of internet reading later I started on the Buhner protocol and made an appt. with an LLMD which I couldn't get in til May of this year.
Spent most of 2015 winter and spring sitting either on the couch, in a chair, in the tub and in my pajama's. Some days bad, some horrible, a few tolerable, fewer yet almost like old times and then some lost to the ether as if they never happened at all. Occasional days of energy spent doing too much like a crazy person and then paying for it later.
You know the drill.
Little by little I've been getting schooled in what the boat we're all in looks like. Not too good looking of a boat, is it? Occasionally, feeling better leads me to believe that I'm getting out of the boat only to be reminded soon enough that no, that is not the case. You can keep your seat, lady. This ain't no '3 hour cruise' we're on here and it ain't over.
God knows that I'm not nearly as sick as a lot of people are with this. I can count myself as lucky much of the time. No seizures, no hallucinations, no pain that makes me do more than moan quietly other than that one time with the back spasm attack. That was really bad but it was once. I'm lucky to have an LLMD in the area that understands what this is and is
open minded enough to include diet and herbals in his approach. I remember the day of my first appointment: after looking at all my labs and list of symptoms and talking to me for an hour he said "Yes, you are significantly ill". I remember the tears coming because it was the first time in months that I didn't feel crazy for no good reason. Someone understood.
As you all are aware, you have to have it to understand what having it is like. And anyway, since you don't look sick people don't think you are.
My husband is unhelpful and seems quite uninterested and frankly, irritated by the whole thing. I've been accused of 'wallowing' in lyme disease and was recently told that I enjoy 'shouting it from the hilltops' when I don't "really know" that I have it at all, even though he was at the first LLMD appt. with me when the doctor went through everything.
He extends approximately zero effort in helping share any of the household load and frankly it's hard to understand how anyone could be so uncaring towards another person forgetting that the other person has taken very good care of him when he needed it. It's not nice to say but he is one that expects to be taken care OF and catered TO and will wax eloquent about
his own very interesting aches and pains on and on and on and has for years. Hence, caring about
and for someone else is not on his list of 'things to be concerned with', since there is exactly one thing of his list of 'things to be concerned with' and that one thing is him. Being this ill has brought me face to face with reality in this matter: I have married someone that will not take care of me when I need it.
He likes to say things like; (insert surprised tone) "what's the matter? Are you okay? Are you sick today? Did you eat something bad? Is it your stomach? Your back? Do you have a fever?" When I tell him (my tone becomes more exasperated everytime I have to say this) "it's the same thing it always is but today my muscles are especially sore, etc, etc" he'll then say some version of "welcome to my world" or "I know what that feels like" or "tell me about
it" or "when you figure out a cure for that let me know" and then resumes his advanced degree study of Craigslist postings and Weather Channel updates or says nothing in response or says something completely out of context like "I hope the new parts for the snowblower show up today". (Bitter wife? Check and double check and I don't like it)
This brings me to the one very bright lining for me in this illness which I must share: The Father, Son and Holy Spirit have never left me through this last 2 years since I finally turned to Him. Being sick has afforded me the luxury of lots of reading and listening to His Word (even though retaining it at times has been a challenge) which is such a comforting thing. (Emmanuel, God With Us? Check.) Try a detox bath with instrumental Hymns playing if you want some healing and relief. If anyone is offended by 'religion' I'm not talking about
man-made religion and I'm also not preaching. Just sharing my whole experience which includes this most wonderful blessing of being able to turn to the Creator with all my flaws and pains and fears and feeling Him right there with me. And yes, I do pray all the time about
my snarky attitude towards my husband. Some days are better than others.
Treatment wise since May I've been on 2 different oral AB's (plus an antifungal for a couple months for a raging case of systemic candida which Christmas may or may not have woken back up and fed) in addition to a bunch of supplements and also some Byron White herbal things and now cryptoleptis for my brain. The last AB was levaquin but recently in reading about
it I've decided that the risks of that one outweigh the possible benefits. Not sure how the doc will react to that but I'm not taking any fluoroquinolones anymore. I've been off everything since mid-November as he had me on a whole detox/diet thing and he also feels there is value in 'pulsing' AB's a little. I went back on everything the week before Christmas and I was feeling so good! I signed up to volunteer with a local organization and also was pondering if a part-time job would be a good idea then whammo, the resumed-treatment-full-moon die off began and it was so awful that I actually stopped taking everything again just so I could make it through Christmas. So I resumed it all today and I'm now waiting for that old familiar ache to start up again. Happy, happy, Joy, joy.
Yup. So today after trolling this forum I decided that the only people that I can interact with about
this are fellow lyme people. I don't have anything profound to offer at all but I'm sure tired of being alone in this illness. So if anyone managed to read through this whole thing, I thank you. Say hi and let me know you are out there. Maybe someone has a similar situation and we can boost each other up! All Blessings to everyone on here and thanks again!
Post Edited (Tillybear) : 12/27/2015 3:39:30 PM (GMT-7)