Newbie just wants to tell her story to someone that understands. You don't even have to read it.

Hello all,

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.

But:

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)

Tillybear you write really well! I think you may have found your new part time job. I so relate to your words even though I have one of those saint husbands (lucky girl born on Friday the 13th no less).

You are not alone and it is a horrific battle we face.

I was at a Women's Bible study luncheon when I got bit. Out on a cement patio. I collected up the long flowing table cloths off the tables and carried them into the laundry room. I got home and had a bite mark. I did not see a tick and I just thought it was a spider or some other mountain residing marmot. I knew nothing about lyme disease or what it was.

I sure found out.

Welcome new friend. Hang around. Lots of super good people here. Tons of information.

And remember I care.

~Annette

hi Tillybear, thank you thank you thank you for sharing!!! I loved reading your story. I did actually read the entire thing. you're an excellent writer. I haven't been on this forum for a while for a few reasons but am glad that I logged in today because I especially needed to hear the part about The father, Son, and the Holy Spirit.

I personally have a strong faith in The God of The Holy Bible and the thing that's kept me going is believing that I'm led by the Holy spirit, by HIS Holy Spirit. BUT, this illness has gotten to my head. It"s messed up my hormones, my thyroid, my serotonin, hypothalamus, etc etc to the point where my emotions are so far out of whack. I know that there's a physical cause to my mental issues; but its still causing me to doubt everything I've ever believed. I haven't even gotten any compassion and/or support from peeps at my home church! its as if all they care about is the cancer victims; buy Lymies? Forget it, they cannot possibly learn about another debilitating disease.

After 1 & half years treatment and diagnosis, but was sick for 10 years with strange periodic episodes just as you described, I'm doing better physically but not mentally. one thanksgiving I managed to highly irritate the one person in my life whom Id wrongly thought was my 'go-to' person, and shes since disowned me as a sister. She basically told my family that "do you think her illness is real, is she hypochondriac"? Well, I've been totally nuts ever since finding out she said that to my daughter and husband who now 'wonder', even though they swore and promised to stay by my side in love and support. My sister has betrayed me, she plotted my mother against me, I didn't see them over Christmas and was asking God, why is this happening to me? Why has HE given me this chronic illness that's taken almost everything from me? My counselor said I'm asking the wrong question, it should be, "God what do you want to teach me in all of this"?

I couldn't attend any Christmas eve services OR even attend church today as I've been sick with a cold for over two months that wont go away.

I'm currently only addressing babs with a cryptolepsis tincture, and antivirals. The virals are by far THE WORST-for me that it is!!!

anyway, thanks for sharing. I'm thankful to have this forum where we can relate to one-another in a Lyme world where there's basically very little or few who can relate.

Carrie of Pac NW

Thanks everyone for the nice responses, what a relief!

Littlebear: I, too have trouble comprehending what I read and written words seem like a big old word jumble puzzle at times so I know what you mean. I tried to use paragraphs and white space as that seems to help. As far as the pent up comment. Yes. But there is no point in letting it out because no one gets or cares what I'm saying and it just makes me look either nutty or like an attention/sympathy hound. I spend a lot of my time in my head or talking to the Lord. He's a really good listener.

As far as detoxing, I just got out of an epsom salt and essential oil bath and I do dry brush beforehand. It really seems to help most times. I have used the Alka Seltzer Gold but I don't know if it does anything. Back a few months when I was really miserable with a huge candida die off I even tried coffee enemas. I've given a bunch of them as a nurse but I just don't seem to be able to do a very good job myself. I think they helped even as bad a job as I did.

I'm glad that I found this forum, too. Thank you!

Carrie of Pac NW: I'm so sorry that your sister failed you. Don't we all fail someone, though? It's hard sometimes to feel forgiveness, I know that. Somewhere I read this: "holding a grudge is like swallowing poison and waiting for the other person to die". Some days I can do forgiveness very well and others not so much. I have one sister that I count as a go to person and she at least understands that I am ill if not what it's like. I thank God for her. She's 5 hours away but only a phone call away, too. I'll pray that your husband and daughter remain faithful to you. What is helpful for the neuro lyme anyway? Just time and the body healing? What about deep breathing? At least that seems to calm my mind when I focus on my breathing. Maybe it would help you, too? God Bless you and I don't believe He gave this to anyone.

Janet: Thank you for reading my post and for the welcome. Darn Lyme disease.

Annette: You said "I knew nothing about lyme disease or what it was.

I sure found out."

Ain't that the truth? Sometimes it feels like I'm not done finding out, either. The gravity and seriousness of it is still settling on my mind I think. But anyway, thank you for the welcome.

LL: and thank you too for the welcome and I will read the new to lyme area. It seems that I did a few months back but of course you know that I can't be sure about that. haha.

sweatpea-You logged in for a reason today. Remember we are always here for you.

Your story brought me to tears. I can soooo relate to all you said. I
am new to this Lyme thing too. I am still trying to maintain my pre Lyme abilities...because people believe I am over it or should be over it. None of us will ever be over it...we just cope ,with some better days than others. I am looking at a 12 hour ride home and work tomorrow so must stop for now. Lyme has attacked my pancreas and now taking meds for type 2 diabetes . God is good, all the time God is good.
Crispie

Good God, I know where your coming from. In my case the company offered early retirement for those who qualified. I was the second person in line, but because of my licenses they couldn't find a replacement for me. Had to stay another 3 months past the date of retirement.

I got concerned about the brain fog. Several million dollars worth of equipment, very dangerous equipment, and I am almost a walking zombie.

Since you are a RN you will be familiar with the Billi light. Used in the neo-natal unit.

Check out my posts.

God Bless and Good Luck

Thanks girlie, thank you tillie b....
I too pray constantly. .. i have found two others that were rn s and have recovered considerably..i feel like job...you know if spirochettes are in saliva there is a chance that your hubby may have it also. One got it from a tear ..maybe see if he will do igenix test .?..i wouldnt wish this on anyone but my gf is happy to ignore her growing symptoms chalking it up to this and that the way we all have justified...there is that point where we cant ignore it..one fast talking nd said everyone has lyme its just if immune system can keep it in check...mine didnt check...i want that quality of life back. I miss oreos and running and making music...will i ever again? I have to dream i will .if we suffer for his glory than let him be glorified. I read once in a meditation book from a ww2 prisoner be careful when you pray our lords prayer . One actually invites heaven to earth. Wrath and all. . . If mosquitos are transmitting it will take center stage soon. This daily hell is better than some worse than others . I stopped comparing and only hope to be inspired to continue fighting. Keep up the good fight for we wrestle not with flesh and blood but against powers and principalities.

This Christmas has seen too many treats and I can feel it. We eat mostly organic or better and have cleaned up the diet so much since June. MY LLMD told me initially that I was crawling with candida and put me on fluconazole (he uses the Zyto Scan) and then I had a food allergy blood test that confirmed it so my husband and I both did a one month anti-inflammation diet... Dr. Amy Myer's. Boy did that ever help me initially but then my other symptoms came back with the full moon. Husband was a bit salty at first as he didn't feel much better but after a couple weeks he was feeling A LOT better and even a long standing auto immune problem really started to clear up.

He was diagnosed with lyme in the 80's, then they changed it to Legionnaires disease and put him in the hospital for a week on IV AB then sent him home and told him he was better and they weren't sure what was wrong with him. He says that he does remember having a bulls eye rash.

Brain fog and mood are pretty serious today. Even my typing is more affected than it has been lately.

I actually haven't gotten dressed since Christmas. Maybe tomorrow will look a little better.

bluelyme: I don't know what to say to you other than I agree and also if He allows it, then it has to be okay with me. He has His hand on all things.

Tillybear...concerning pancreas....connected the dots...no family history...was normal prior. I want to encourage you and myself...Lyme can be beaten...many of these good people have been cured by the grace of God. I was just having a moment .