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When was your rock bottom?

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Posted 7/9/2014 8:04 PM (GMT 0)
At what point in your battle with Lyme do you feel things were at their absolute worst? Was it before you were diagnosed, at the beginning of treatment or some time later? I would love to know when I can expect to have the worst of this behind me. What are your own personal experiences?
Posted 7/9/2014 8:09 PM (GMT 0)
I've had a bunch of rock bottoms. I'm amazed that I'm still alive. I think the absolute worst regarding Lyme Disease (for me) was when I was bumping into walls, couldn't tell one end of the hallway from the other, had badly slurred speech (and tics), and could barely talk--was almost losing speech.

Btw, I wasn't able to read, but strangely, since I'm a writer, I never stopped being able to write, even when I could barely speak.

Oh, and I could speak much better with my eyes closed.

Margaret
Posted 7/9/2014 8:18 PM (GMT 0)
My worse time was weeks 4 thru 9 on my first round of Mepron to challenge Babs. I think at that time I was on Zith, Mepron, and Omnicef. This just after switching to a new LLMD to get more aggressive treatment for co's. My first year of treatment was pretty uneventful, except for some improvements with GI issues.

Be careful what you wish for.
Posted 7/9/2014 8:24 PM (GMT 0)
My rock bottom was the 3 months during which I was unable to stand let alone walk.

I came down my 2 flights of stairs on my bottom and crawled my way back up,sometimes this took up to an hour,I was in absolute agony.

They were very bleak times and I still don't know how I came through them.........I guess it was plain old pig headedness and the hope that things would eventually improve.

Feeling pretty good these days,but I can still remember the hopelessness of those desperate times sad

Tickled
Posted 7/10/2014 1:18 AM (GMT 0)
Rock bottom was from June 23 2012 to Nov 2012. Literally thought I was going to die every day.
Posted 7/10/2014 3:42 AM (GMT 0)
For me it was October 2013 to Jan. 2014 (approx) - when I didn't know what was wrong with me and my muscles were twitching day and night, all over, had tremors, muscle weakness, vibrations in my body, muscle and joint pain, nerve pain in my left shoulder blade, arm, and hand, anxiety, cold chills/hot flashes,not sleeping well. (those were some of the symptoms I felt daily) I thought I had something terminal and was an emotional mess daily. I felt like I was losing my mind...couldn't handle the multitude of symptoms.

I'm hoping that was my rock bottom, and I won't be seeing a worse time in the future!!!
Posted 7/10/2014 8:58 AM (GMT 0)
worst times:

When my herxing was so bad and constant that my dr thought I was going to go in shock (had to pauze treatment for a while).

when I could no longer tolerate the constant pain (in every little inch of my body), and no single painmed would help - that has gotten better now thanks to LDN

when I was admitted to hospital for cellulitis and a severe inflammatory immune response, getting IV abx and having the worst emotional herx ever

I'm having a serious flare in my neurosymptoms now + my heart is giving me a hard time, my food allergies are getting much worse again = very hard to handle (and accept, I have to admit) after 23 months of treatment.
Posted 7/10/2014 10:25 AM (GMT 0)
My rock bottom was before being diagnosed ~ joint pains all over and I couldn't walk (I used crutches) and even after I was diagnosed I had problems when taking antibiotics (Doxy).

It was when I learned about detoxing and alternative medicine that I started to heal.

Denise
Posted 7/10/2014 11:34 AM (GMT 0)
My worst was right before I started treatment. I was in so much pain, I was losing weight, I couldn't eat, had muscle twitches all over, had muscle weakness, and I literally thought I was going to wake up one morning and not be able to walk. My legs felt like they were getting numb from the inside out. I was waking up at night with panic attacks from worry since I wasn't sure what was wrong with me and had severe insomnia. It was the winter from hell for me, but this particular week was my rockbottom.
Posted 7/10/2014 3:20 PM (GMT 0)
I read these and I get choked up. It's such an awful time we go through...and it doesn't have to be this bad. It's criminal that we suffer for months, often years...and then the road to recovery is a long one.

Someone said once, that we should be having 24 hour nursing care to take care of us when we have lyme...but we don't...for the most part we tough it out. No one except us can truly understand what we go through. Words don't effectively describe how awful it is.

That's why this forum is so important.
Posted 7/10/2014 3:33 PM (GMT 0)
For me, it was before diagnosis. Knowing there was something wrong with me, but having no idea what. I herxed a lot when I started treatment, which was tough, but at least then I understood what was happening and why. Not knowing what was wrong felt helpless, but starting treatment, even with herxing, felt empowering.
Posted 7/10/2014 4:17 PM (GMT 0)
For me, it was January 2013 before I had gone into an LLMD or another doctor. Just doctors that dismissed me saying it must be the flu or some other crap.

Once I started treatment the downward spiral in my health stopped and steadily improved. I had many rough days but I knew that I was on the right path which is a MUCH better place to be then a downward spiral, even if it includes bumps and detours on the way!

~beth
Posted 7/10/2014 9:13 PM (GMT 0)
Thank you so much for the replies - they seem to confirm what I believed to be true - no matter how bad the herxing when treatment starts, nothing is as bad as the not knowing.
Posted 7/10/2014 10:28 PM (GMT 0)
On average I hit a new one of these lows every two months. I’m about due for a new issue any day now. :-o

My worst times:

The first time every inch of my body was in severe pain. Thought I was dying.

Shortly after being diagnosed with Fibromyalgia I was put on several antidepressants (not all at once). This is the standard treatment for Fibro. My brain is apparently not fond of antidepressants. I was literally insane for about 3 months.

Developing Optic Neuritis which I still have.

When the Neurologist told me I had MS. Whether or not I do is still up for debate.

Developing Erythromelalgia which I still have. It’s awful No other way to say it.

First time I had a tremor. Thought I was dying.
Posted 7/10/2014 11:21 PM (GMT 0)
February 2014, before I started treatment.
In February it all hit me so hard - muscle twitching (including my tongue), weakness, muscle pain, depression, anxiety, and more - I just knew there was something horribly wrong. I couldn't look at my little boy (15 months at the time) without sobbing, I just knew I wouldn't see him grow up.
I went to a neuro told him my symptoms... When I told him about the tongue twithing he looked at me like I'd just shot someone. Having the EMG done, and waiting for those results was a pretty rough time too (this was early March).

I'm pretty grateful for where I'm at now.
Posted 7/11/2014 12:22 AM (GMT 0)
Wow, I read some of these and I consider myself lucky so far! My rock bottom was this past winter before diagnosis.... I had vertigo four 4 months. Then muscle weakness, muscle twitches, pain, pins and needles, and slight numbness for 3 months.. I was scared out of my mind, I had no idea what was happening to me. I went and saw a therapist because doctors thought i was crazy. I was convinced I had MS.

Started feeling better after only 2 weeks on doxy but had to stop because it destroyed my stomach. Starting treatment next week under a great llmds care:) i will be broke but he is worth it. I hope...Still have weird feeling in head, leg pain and annoying muscle twitches. Other than that I feel good!
Posted 7/11/2014 1:18 AM (GMT 0)
Rock bottom for me emotionally was before I was diagnosed. I remember literally writhing in pain worse than I'd ever experienced before. I had intense headaches almost daily but there were times when they got so bad - probably a 20 out of 10. But the worst part was the emotional toll of not knowing what was happening and wondering if I would have to spend the rest of my life like that. Rock bottom for me physically has been during treatment when I'm having a bad herx and am in so much pain, am twitching/convulsing, running into things, vomiting, having intense anxiety, having shaky hands that drop most things I try to pick up, and feeling dizzy and just plain weird.
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