i haven't written since i first signed up, but i've been reading everyday...your stories have made me feel less crazy, less alone. I have a wonderful support team at home, but none of them reall y knows what it feels like, so THANK YOU for posting your updates...
I'm coming out of what for me has been ROCK BOTTOM. I'll try to be terse, and in no way shape or form am I trying to be melodramatic...but I swear I was shades away from selling my soul to the highest bidder.
I wasn't sleeping, I was so nauseous, I couldn't eat well...so EXHAUSTED all the time.
The Docs treating me are not actually in sync with each other. Go figure. I was bit July of 09, diagnosed with lyme by August. My 4 year old son (who was 2 and a half at the time) saw the bulls eye rash, and told me I had an ouch.
context: [We had just moved into a new house, and the move had WIPED me out. I didn't know I had lyme enciphilitis. I was overheating, dizzy, and I kept saying I wanted to change my brain water. I could barely stand, my husband was at work, and a panic attack was hitting big time. I've had panic attacks before, but this was a doozy.
I threw myself in the shower with my son. Couldn't leave him unattended in a new house...and he pointed at what I thought were my boobs, so of course, trying to stay "on" as a mom, I gave him an anatomy lesson (sorry TMI), no honey these are mommy's boobs..
It was only after the shower I saw the bruise. Under my right breast. It wasn't in a bullseye pattern. It wasn't raised. It was a perfect circle. I thought I was stressing about an impending trip to CA from NY, (with my toddler...just thinking about driving to an airport felt like mission impossible)
...I looked up shingles and hives, again, thinking it was stress, maybe I spaced out walking into a wall. The perfect circle was weird. Because I have brown skin, it didn't look like a bullseye until 6 weeks after the removal of the tick.
The only picture that looked remotely the same was one for lyme. I called my step-mother in CA, who is a Dr (psych) and my (Dr of Chiropractic) husband who was out at a business dinner. They said I was cold tripping. It's stress.
But I read more in that hour, and actually remembered the tick bite... (from our fourth of july camping trip to the Poconos (apparently a highly infected area)). My husband was the one to pull it off me then, (I think it must have been there 3-4 days;( and we both thought nothing of it at the time!)
By the time we got out of urgent care, I had nine bullseye rashes all over my body. The doctor was standing in front of me. I walked in with 2, my husband went in (after realizing thru that 1st night that oh sh*t, it is lymes...)and explained to the Dr in medical-ese that he thought I had stage 2 early disseminating lymes.
In showing her my by then 2 soft-ball size bruises, we discovered they were all over me. NINE!] Can you believe we didn't take pictures? Ugh.
All I was given was oral doxy. In retrospect I should been under IV immediately. I DIDN'T KNOW! I grew up with dogs, have pulled off ticks, I camp(well I used to), I HAVE NEVER ONCE THOUGHT of Lyme...
I'm allergic to mosquitoes and spider bites. I thought the cure was a shot of benedryl or something...I had to get a heart halter monitor, i had irregular heartbeats and I was terrified to think it was in my brain and my heart...
The doxy managed the heart issue and I confess I slipped into big DENIAL about lyme. I kept doing what I had to do,I had a toddler, and now medical bills were coming in...I complained a lot about my symptoms still, but I individualized them, oh my legs are asleep, oh the tingles are in my back, up my spine, my head hurts, my back, my neck...etc.It was endless.
But I'm a hypnotherapist. I'm a reiki master, I believe in mind over matter. I stayed stubborn to the core about everything. Did I change my diet, no, gluten sensitive sure, but did I stop having wheat, no. Did I drink beer, have wine. yes. All of which is a contraindication on meds...
I was angry at the idea of compromising what i wanted to do.I think my brain was totally addled, but I thought if I could just stay zen, I could keep my stress managed I could balance out my physiology, if only I could summon the energy. You know, healer...heal thyself.
Then I had a miscarriage. We weren't trying, but I ADORE my son. I felt so guilty, so ashamed. God help me, but it was HORRIBLE because I was relieved...I've had a miscarriage before, but not before the birth of my son, not before Lyme...and I was undone.
I had no reserve energy, nothing to give a newborn, and that haunted me, but the thought of pregnancy terrified me. I didn't even have enough energy for my son now, I had a constant headache bordering migraine status, and I stopped working. I just wanted to sleep.
That was 7 months ago. I shut out my friends, most of my family. The tingling in my limbs was so bad I couldn't feel the pin prick test. It got virtually to the point where my whole body was numb.I was sensitive to temperature though, weird to everybody. In going to have bloodwork done I had to write my medical history and it hit me like a ton of bricks. Wow, was my denial was strong.
In looking into chronic lyme, I was shocked to see I could be the poster girl for all the symptoms I was having. I was terrified. I was having brain fog, I was in constant pain, like my body was stuck in a charlie horse, fight-or-flight locked position. I had 62 of 70 listed symptoms.
I couldn't get insured with a pre-existing condition. My husband made too much to qualify for SSI, (please recognize, we got hit with the medicare audit for chiropractors, i stopped working, plus we had school loans.It's been a whirlwind of hand-to-mouth living, trying to stay organic etc. I mean we were generally into a wellness lifestyle)
...So I self pay to get lyme checked and it comes back positive. (Rather it never went away). No more zen living, I snow ball into hysteria. My inner control freak wanted to flip the EFF out. (sorry. i just can't convey this enough)
3 months ago. I've been prescribed morphine, vicodin, and neurotin, all of which made me feel worse. I think this is when I found Lymenet. Or I should say my parents found it for me when they came out for a visit, and moral support of my husband, and they saw in what shape I was. they had no idea.
At this point I was sensitive to light and sound, I felt like I had the pre-flu, and my head was killing me. The doctor sent me to Infectious Disease, who in turn sent me to a neurologist. Who said I don't have lyme I have a chronic migraine set off by the miscarriage probably exacerbated by my compromised immune system from the lyme.
they all ran the same tests.I have 3 bands where there should be 5, and 1 where there should be 3 to be active lyme. so why the syptoms? God knows, I couldn't afford the Drs but I needed to know what was wrong with me.
I am given amitrptyline (30 mg a night to add to my pain meds). I get sick on the morphine and get off as quick as I can. The neurotin made me paranoid and wish for death, totally toxic to my system. I was always crying. I even thought my mother in law was out to get me=/paranoia...
(I think this is the 1st and last time I had written on lymenet, scared to go back and look at my thread...I apologize if any of this is redundant)
I could say more but if you've seen the movie the Exorcist...that was me. I mean I met my Dark Side and I was desperate to get off the meds that were making me so sick...This was my rock bottom.
This is when: YOU ALL GOT ME THRU THIS. I could not have made it without reading about you all. It felt like through darkness and despair, I could see little flickers of light that other people were holding for loved ones, and that i wasn't alone in this...
(Ok.Obviously, I wouldn't be here without my husband.He's researched and researched, and he's so determined not to give up on me...had to say it, feel very humbled by his determination to see me through this)
A month ago I detox. Coloidal silver, and vitamin flushes. I was sleeping in a room with blankets pinned to the windows to block out all light.
I had a spinaltap, and an MRI within a week of each other, starting 3/23. Spinal tap came back clear, I was totally convinced it would be in my spine. Took me moment to feel relieved about that. (Results of the mri on the 26th). I had an allergic reaction to the stain on that. Eye swollen, lines etched in my face...such an opportunity to work on my vanity;)I was a straight out mess. dbl ugh.
I prayed, I meditated. I cried. A lot. I'm not a lightweight when it comes to pain. I gave birth w/o the epidural, I have ink that goes down my entire back and wraps around my waist. I have existential anxt while watching people suffer on the news, the whole Japan quake brought back memories of being in the big quake in the Bay Area in 89... I've SAT through pain before...but I wouldn't wish what I was feeling on my worst enemy.
...I tried to make peace with my self, with ticks, with life. Again and again, I am so grateful for my support team that let me sleep because from this horrible place, I went into severe herx. how could there be more pain?
I tell my husband to blend the vitamins, because I can't swallow all of them without choking. I did not feel like myself! I was fully preparing to meet my maker and while i was at it, i had a few words on lyme and the nature of suffering i wanted to discuss with Him/Her.
Between the vitamins and the prescription pills, and those bills, the fear of not being able to have more children, the straight out death urge, the straight out bruise like pain, the guilt and shame for wanting to give up.
I would hide in the bathroom to cry...so that my son wouldn't see my face and ask me if I was better. So that my husband wouldn't see me suffer. I felt slightly hysterical and defensive when people told me not to stress, to just take it easy...
...ANYWAYS, my husband found some shake drink with super food nutrients in it. After a week, I've had zero headache. Within a half an hour of taking an accompanying neuro drink, I was off the couch playing with my son. It was a shock. I actually went to Chuck E Cheeses with my son to celebrate, Chuck E Cheeses! (I would have laughed 3 days before, and told whomever suggested it to hit the lights on their way out!)
In the last week, I went to a hospice benefit where I listened to live music, i went to the grocery store, 3x! I went to my son's school and watched him swim for the first time...I CANNOT believe I have energy! My symptoms aren't gone, but my theory is that my immune system just got a serious jolt of everything I'm sure I was completely deficient in. And at least now I have a fighting chance.
At first I was skeptical, RELIEVED to not have the shooting pain in my head, taking it hour by hour. Now it's been days, and dare I say I feel hopeful?
The difference between a pain free life and chronic pain is ASTOUNDING and a worthy goal. Just to be able to function again, to feel like my SELF again, to play with my son and not be begging him to keep it quieter...
I don't ever want to take my health for granted again. I'm not a 100%, but I'm up, I'm not going to let this define me, i refuse. For a moment I so was ready to let go...You are all so amazing for recording your process...
I keep telling myself better me, than my husband, where would I be if he was the one bit? Or my son, I wouldn't have understood.
If I'm in remission, or it's in it's cyclic phase, or it's not lyme, maybe I'm dreaming...I don't know, (admittedly a little nervous about mri results next week). But I actually feel better than I have since I was bitten...
I don't know if this comes off manic, but I feel calm...steady, I try not judge myself and the world for my process, I give myself time instead of pushing; i'm trying to practice forgiveness...it's taken me ALL day to write this, but I actually HAD the energy to write and I NEEDED to get this off my chest...
I just want to express my ABSOLUTE GRATITUDE for those of you championing your loved ones on here, doing the research, and those of you suffering, DON'T GIVE UP.
I want to be a torch for you, as you guys gave me so much hope. If I can face my tomorrow so can you...there is so much ignorance about lyme, you are all warriors in this fight...it HAS to change.
and so it will. it must.
much much love and health to you and yours m.
Posts: 8 | From syracuse,new york | Registered: Mar 2011
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A spinal tap will not usually find Lyme.. about a 20% chance. (you already had a positive test for Lyme ..so ..) The spirochetes do not hang out in body fluids.
An MRI will show nothing unless maybe you have lesions from the Lyme. Please let us know how that one turns out.
I hate to say this, but I think you're still in denial.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Dear lyme_ish,
Your story is very powerful. Certainly many folks have been bitten by ticks and yet, I believe we (and you) are the worst of the worst.
I'm sorry you've had to live this. From experience though, I'd say it's all for a reason. There is purpose in it. Maybe to help a loved one on another day, maybe to lend a helping hand to the one walking after you.
Bravo for looking at it in the face and for finding your strength again. Hurray for hope!
I wonder, have you seen an LLMD? Have you treated Bartonella? Please forgive me if you wrote it above and I missed it. I did read your writing...
If you have not addressed Bartonella, I urge you to consider it.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I can relate to a lot of this. Both your symptoms, and fluctuating on whether or not you think it is Lyme. I've been at this awhile, even way before I found Lymenet, and it has been quite a journey.
I understand why the denial happens. I have had a lot of it lately. Lyme is what best fits what I am going through, but sometimes I still find this whole F'ed up situation hard to believe. But then I keep coming back to, it's what best fits. Someone doesn't just go from completely healthy and happy (and outside all the time), in the summer no less, to sick as a dog, literally overnight. Sigh. But I just feel like, if it's really Lyme, why am I not better yet? I have done EVERYTHING. So then I doubt, and think it's something else.
Anyways, would you please let us know what this shake is that you were taking? The brand, and where you got it, etc.
Is there anything in the ingreidents that is acting like a stimulant? I have noticed that sometimes, caffeine makes me feel a LOT better, so much so that it's almost a miracle. It really wakes up my brain, gives me energy, etc. I think it's because it's a vasoconstrictor. But there are other vasoconstrictors out there that may be doing the same thing (herbal ones?). There are things like Guarana, etc that act like caffeine.
Either way, if it is helping you, I say, TAKE IT! Just don't let it get you to the point that you feel burnt out (if there is any kind of stimulating effect). But yeah, I would be really interested to hear what this shake is.
Good luck to you. Please let us know if something else helps. Just so you know, treatment has taken away quite a few of my symptoms, like light/sound sensitivity, headaches all the time, brain fog. I am only left with feeling exhausted all the time and a little "unreal," but that seems to be from the tiredness.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
...the only treatment i had was in the beginning. i thought six weeks of oral doxy and that would be that. everything else has been pain mgt.
...thought of coinfections is always there. i was hoping that the last 3 blood draws would show something. it all comes back inconclusive.
irregardless. i just needed the energy to fight. i was past giving up. it's like my immune system was on shut down. i'm so hesitant to give the name of the shake, only because my husband has since bought into the company...(i mean crap, we've been spending SOOO much $ on vitamins, so we switched over...actually saving $ now). i was in a morphine cloud a month ago...it still doesn't seem real to me because of all these other perks to it.
i totally get that it might still sound like I'm in denial. I'm not saying i'm cured. but from the brink of...I don't even want to THINK where I was at...but it was bad. I'm NOT in a dehabilitating state. I can go back to work soon, I've been out of commission since Xmas. (thank God!)
...Let me be the guinea pig. If you need to know what it is...PM me, (I will give you my other contact info, like my FB page etc...I will totally pm anyone who wants the shake info, who doesn't want to wait...i just so DON'T want to be accused of "selling" it...
(YET!I'm sure i will, though. WHATEVER! My husband got into this BECAUSE of the change in me. He was trying everything.I was just taking what he put in front of me, grunting, with a let me go back to bed attitude...I'm 36, really I was bringing sexy back. NOT!!! My 91 year old grandmother had better energy than I did!)
I will have no problem being a poster girl for something like this in the future...if I can ride this wave to positivity and health. If there's some kind of twilight zone kind of success, I will straight out fund lyme awareness every where I can.
People live with diseases everyday, like herpes, like hepatitis...aids. One of my best friends has HIV, and has managed pretty well in the last 10 years. I just wanted above all else to be able to manage my own life. AND I feel it! I am baaaa-cck! I can feel the tone in my voice is different, my perception is different.
That was all I needed to be able to get my gumption up for my old life!
Of course I want to survive this, and be lyme clear. But where I was praying for the freak lightning bolt to take me out...I am now equally, saying: Bring it! I am so going to vibrate at a higher rate than what the spirochete damage has done.
Nothing like this has happened to me in the last 16 months. I'm taking pictures and documenting everything now. Too chicken **** to post yet, but I have every intention of being a future success story.
I totally acknowledge everyone has their own journey. I just wanted to SHARE...you are NOT ALONE, is all. This was the 1st day I haven't been out all day...I had time to catch up on all of you...
Blessings for the night...catching up on my to do list, which is a flipping MILE long;)
thank you for reading my LONG A$$ tome of writing. SORRY. please forgive me.XOXOXO.i'll be better about it from here;)
[ 04-13-2011, 09:32 PM: Message edited by: Lymetoo ]
Posts: 8 | From syracuse,new york | Registered: Mar 2011
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posted
I TOTALLY agree! I honestly thought the Dr would simply put me back on antibiotics. I am not denying that...I was a month ago, so upset that they wouldn't TREAT me, before ruling out MS and the slew of other nightmare possibilities...My plan is to start over. Go back to the Neurologist in a week and half, thank him very much for reviewing my medical file, and ask what the wean off the A.tryptoline looks like...the stamina I have now is night and day from where I was. As SOON as I am able to, I am getting the full battery of tests. I want to be Lyme CLEAR before diving back into my life again...As soon as I get my results I will post them, will see if I can get them faxed today...
Posts: 8 | From syracuse,new york | Registered: Mar 2011
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