Emotional wreck again

I thought I was on the road to recovery...had a couple good days, and a couple good sleeps...but now i'm not doing so good.

Emotionally, it's wearing on me. I just can't see the end of it. Then I start thinking...the docs don't seem to know what's wrong with me...surely they would have mentioned Lyme it they thought I had it...maybe I've just lost my mind...and somehow my mind is causing all this. Can that happen? Would my brain really be able to cause all these symptoms?

My husband is very supportive...but even he doesn't really understand how awful I feel. The pain, the vibrations, the sleep issues, the cognitive issues, the mood issues, the numbness, tingling, cold chills, hot flashes, muscle jerks, weakness.....to name a few.
It's such a lonely illness.

girlie,

I hear you on the struggle. The average recovery time is probably around 2 years to get to 90-100%. I think that you are just a few weeks in? I would expect lots of good and bad days in between. I'm the same. I felt totally normal for 1 day and then it all comes crashing down. Keep it up, its a long process.

Sounds a lot like my symptoms. Even though I only had symptoms for a two months, Im guessing ive had lyme for a while and total recovery will take a while.

Thanks Louise...yes I'm three weeks in on buhner's protocol...but I'm not using the brand he recommends...so now I'm doubting that...but the website said there was a backorder...plus the extra time shipping to Canada...I thought I'd try some good brands from my health food store...but it's hard to figure out dosages. I'm sure I'll get more guidance from the LLND when i see her next week...keeping my fingers crossed that she listens to me.

Are you able to work?

How long have you been treating? And how much better are you feeling at this point? (I'm sorry, you've probably posted a lot about it...but I can't remember who did what.)

Even if I can get 20-30% better...and be able to work a couple days a week...we are going into debt...and i realize my health is more important...but we have to make ends meet somehow.

I think I'll feel better once I see the LLND. I've gone far too long without medical support.

Girlie,
My story is so bizarre...
Nov2013 - totally healthy super mom, super busy
Dec2013 - after stressful weekend (2 deaths) woke up to sudden onset of nausea, no appetite, full head feeling and ears blocked, air hunger, leg vibrations, sore throat, trouble swallowing
Jan2014- full blown neuro symptoms after taking 1 Ativan pill. Massive insomnia, full blown anxiety, OCD, trouble concentrating and tremors. Shaking in throat
Feb2014-more intense neuro symptoms after spinal tap. full body shaking. shaking body parts like tongue, neck, feet..etc. People can see the shaking!! Full body vibrations like 24/7. feels like im pulsating. Legs going numb, cant use hands.
Feb2014-at deaths door after taking 1 klonopin. Tried klonopin for tremors and nearly died. Now clumps of hair falling out, cant get off bathroom floor, no appetite, can no longer function, started massive dry heaving every day. Cant drive. Cant shop. Really with all this??

March - Found LLND I took one month on doxy and almost all symptoms disappeared except a few. But I started to function. Then I added in zithro but coudnt tolerate it so now im only on herbs. Some symptoms returned when I switched to herbs but they are mild/moderate.

I left work on March 1st and haven't returned. I can drive and semi function now. But nowhere near normal. Still cant gain the weight back. I have mild headaches, ear issues, throat burn, occasional nausea, brain fog. Limited energy, occasional vibrations, minor shaking.

Louise - interesting to read your story...and the "triggers".

I supposedly pinched a nerve in my neck April 2013. Two months of excruciating shoulder blade pain, numbness/tingling left arm/hand/index finger.
Hot flashes started, and lump in my throat...but ignored them.
By August had improved to that the shoulder blade pain was down to about a 2/10...and arm was pretty good - just weak from lack of use.
Finger still numb.
Around that time, started to have some anxiety, depressed mood now and then.
Started back to work part time. Doctor thought my mood was related to menopause and put me on Estrogen/progesterone...I looked at it in my cupboard for three weeks...not wanting to take any..as I was 51 years old, fit, no issues, never been on any meds. I gave in during a low mood moment...
Three weeks litter the p--p hit the fan. I started to get vibrations and my injury started to get worse again. Doc says - take more estrogen...which I did, but I was still only at 1/2 rec. dose. Vibrations got worse....upped it to full dose...well then I was vibrating 24/7....not sleeping...and very anxious. Thought - it's the estrogen...so stopped it...vibrations lessened so that they weren't there at night.
Woke up one day in October - to joint pain all over my body. That lasted a month. then the muscle aches/pains came.
I'll stop there - as it just continues to get worse...and I haven't got the patience to keep typing today...not the best day ..
But the point I wanted to make - is the 'triggers' - I blamed the estrogen on the vibrations...but maybe the estrogen screwed up my hormones - and that triggered the lyme to come out full force.
The question is: was it ever a pinched nerve...or just lyme...as I have been reading that Lyme can cause radiculitis....so...interesting.

Summersun - You're right - I'll feel better when I get a Docs support...I'm sure hoping she is good and isn't just a "poser"...

I'm sorry you're having a down day again. Hopefully tomorrow will be another better day.

Thanks everyone for your input. It does help to read the posts.

I hope for us all to be well - hopefully sooner, not later!

Today is a sunny day here - so I sat on the our deck with my husband. I can't believe how skinny I am in my shorts. My husband has always liked my toned legs...I asked him if I looked scrawny...and he said I was still sexy...and I'll get my muscle back soon. He's so in love with me, still....sometimes I wonder if I deserve him. I'm such a slouch, whiney baby these days.

lol Girli, I was talking with my husband too. You lost weight, but I gained a lot of weight because of very high inflammation.

With this weather, I'm so ashamed to get my shorts out, or wear skirts. I Always had nice toned legs, and now they started to blow up. I hate it when I look in the mirror, but husband says they still look good. Then I convince myself to go to the grocery story around the corner in my shorts, and I imagine everyone looking at my legs thinking 'she shouldn't wear them'.

Of course you deserve him!!! In sickness and in health, remember? this is just a phase in your life, it will pass. Besides, I think we have the right to whine... LOL

girlie,

when you sit out on the deck with your hubby, soak your feet at the same time!! it will detox you and relax you as well. I haven't been much of a mom to my kids lately but I started doing this with my daughter. I tell her we can pretend its the spa. I make a little detox foot bath for each of us and we do it together. Its fun and i'm helping myself at the same time!!

Girlie,
Yes, I am having relapses. It all started 1995 (Eastern LI) Headaches, fatigue, severe hip and neck pain, knee pain, sore throats, feeling like I was getting the flu. Going to many doctors- GP, GYN,ID and no one came up with anything except to send me to a therapist/psych. Lyme western blot was negative. I never did much about it. Then got active Mono-EBV-life was stressful at the time. I remember one spring getting really anxious and depressed, and ended up going on antidepressants, and things got better.Got off those. about a year later I experienced symptoms again and then my western blot came up positive. I took four weeks of Doxycycline.

In 2005, I was diagnosed with Hashimotos Thyroiditis, started thyroid drugs, Bioidentical hormones, felt better.

2011 started with fatigue, swollen gland (throat) heart palp, leg pains, anxiety- tested pos with bioresonace Lyme Practitioner in Ct- started samento, banderol, many others- after six weeks of that took a dive. No sleep, no memory, word retrieval issues, eye issues, uncoordinated, anxiety, depression, chills, sweats.
Tested with pos with Lyme IgG, Anaplasma, Mycoplasma, EBV, Cytomeglavirus.

about a month ago started again with leg pains,heart palp, headache, swollen throat, fatigue, eye focus issues. Now with LL doc and may start antibiotics. Think I have PTSD from the last Nutrimetrix experience!… and dreading going through that again. I also went on Cymbalta last week to support my anxiety and depression.

So when my mind goes it's difficult to see the bigger perspective.