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Experiences with Chronic Lyme - Worst Symptoms

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Posted 7/6/2017 8:03 PM (GMT 0)
Good afternoon all,

I'm wanting to get some insight on chronic lyme and would to hear about people's experience. Mainly what recurring issues/symptoms you've had.

To give this inquiring some structure, if you would, list your top 3 symptoms starting with the worst and give a little detail about each. Worst can be defined by severity or frequency.

Thanks!
Posted 7/6/2017 8:17 PM (GMT 0)
My joints are the worst and I get bad throbbing in knees.

Although improving, my brain tho was horrific, was constant not too long ago

Fatigue was awful too, but that's improving to the point where I have had a few good weeks and I'm so thankful
Posted 7/6/2017 8:27 PM (GMT 0)
1. foot/ankle pain: migrating, terrible pain that greatly limits mobility.

2. ringing in ears: loud (volume varies), distracting, almost constant.

3. eye/vision issues: clarity of vision fluctuates, eye discomfort.
Posted 7/6/2017 8:53 PM (GMT 0)
Top 3 this time:
Nerve issues - burning, stabbing, buzzing, jolts(full body).
Fatigue - from serious adrenal issues, EBV and Lyme and company.
GI issues - leaky gut, dysbiosis, pseudoblockages.

Top 3 last time I was infected:
Severe brain impairment - late stage dementia symptoms.
Seizures - including random passing out.
GI issues - same as above.

But to be honest, that doesn't even begin to show what all was going on - that's how it will be for many of us. It's literally the tip of the ice burg.
Posted 7/6/2017 9:00 PM (GMT 0)
Thanks for the input. Mine tend to revolve around joints and fatigue. I've had a recent onset of knee pain and left shoulder pain. Shoulder is gone but knees are still there. And of course fatigue but that's pretty much a given on this board lol
Posted 7/6/2017 9:12 PM (GMT 0)
1. Nerve pain - left shoulder blade area, left arm/hand

2. Head stuff (Pressure in my head [behind the eyes] and POTS) - actually two symptoms - I cheated.

3. Shivering throughout body that ramps up when I'm emotional.


Nope - fatigue isn't a given - not all of us do have that as a symptom - that hasn't been on my symptom list.

Only occasionally now since I started Babesia treatment with Mepron i will get tired and need a nap.
Posted 7/6/2017 9:27 PM (GMT 0)
Girlie, that's exactly what my left shoulder was doing. Started in my left shoulder blade, then moved to top of shoulder and had nerve like twitches/pain down left arm. Is that a constant or frequent symptom for you?
Posted 7/6/2017 9:58 PM (GMT 0)

Atlas123 said...
Girlie, that's exactly what my left shoulder was doing. Started in my left shoulder blade, then moved to top of shoulder and had nerve like twitches/pain down left arm. Is that a constant or frequent symptom for you?

It was my very first symptom in april, 2013. It was an acute incident - woke me up in the middle of the night - excruciating pain left side of my neck...across left shoulder blade, left arm and hand. My arm was limp and numb.
I went to the ER

Then after a couple months it slowly got somewhat better...but then I got flooded with other symptoms...every couple weeks a new symptom...

I ended up with frozen shoulder on the left side...much muscle atrophy...and loss of range of motion. I am in rehab now and it's getting better - strength and mobility...but still have nerve pain...
I have the nerve pain just about daily...
Posted 7/6/2017 10:11 PM (GMT 0)
My worst 3 symptoms:

1. Extreme brain fog to the point where I'm walking thru a store and i feel like I'm in another world and wanna pass out,

2. Shaking all over my body especially my face and hands, this is constant,

3. Eye floaters. These black dots with strings attached to them everywhere. It's so annoying!!!

Just for the heck of it I'll add a 4th..ringing in the ears!! If it's dead silent, all i hear is ringing and weird pitched sounds.

I just started omnicef 2 weeks ago and feel the same, no herx or anything. Just saw on my labs i tested positive for babasia so we will see what meds my Dr is gonna put me on July 18
Posted 7/7/2017 2:16 AM (GMT 0)
Girlie, shivering tops my list, too. Did you ever have Babesia?

I used to get chills, but now that I've treated Babesia, I seem to get "shivers." That is, I'm not cold, but these "waves" run through my body. Sometimes it's like an adrenaline rush.

Couple that with intense tingling, headaches and anxiety, and I'm having a real party.
Posted 7/7/2017 2:24 AM (GMT 0)

KB69 said...
Girlie, shivering tops my list, too. Did you ever have Babesia?

I used to get chills, but now that I've treated Babesia, I seem to get "shivers." That is, I'm not cold, but these "waves" run through my body. Sometimes it's like an adrenaline rush.

Couple that with intense tingling, headaches and anxiety, and I'm having a real party.

Yes.!!!
..it's more like a nervous system response to something....they're internal...I don't have goose bumps.

But, I have to say they seem to be worse in the colder months.

I am finally treating Babesia... I wish I had sooner...spent over 2 years on lyme and bart.
While I was treating bart - on my own I did some rounds of Artemisinin (babesia treatment) and I woke up one night shivering with anxiety.
Then I decided I should treat babesia...that may be what's holding me back from full healing.
Posted 7/7/2017 2:47 AM (GMT 0)
Top three:

1- I am always hot. I keep the A/C set low and sleep with two fans blowing on me at night, and sometimes it is still not enough to cool me off

2- I get tremors in my arms and head and I walk like I am drunk.. If I am in the car they can turn into full body contortions. I also get this sensation in my legs where nothing can be touching them.

3- Extreme fatigue and/or weakness that comes without warning.
Posted 7/7/2017 6:06 AM (GMT 0)
1 )muscle wasting/nerve damage
2 )24/7 vertigo
3 ) mind shattering bone aches
and i could and will list later manymany more

1.5 years treatment with bvt ,iv abx herbs rife and other modalities have me much much better .will post successes soon
Posted 7/7/2017 1:47 PM (GMT 0)
Didn't even list my Top 3. These will be ones I've had pretty consistently, off and on, (does that even make sense!?) since my onset.

1) Joint Pain/Stiff Joints (most frequent/painful) - Primarily in my knees, randomly in my shoulder and neck.

2) Fatigue (frequent/annoying) - I always have an underlying tiredness but its manageable for the most part. But on random days, I will be totally blindsided and ran over by a train carrying 20 tons of sleeping aids. (this is how I describe it to family/friends)

3) Heat/Sweating (frequent/annoying) - I sweat like no other. I always did sweat a little more than the normal person but now its just over the top. Gotta keep extra shirts around. Doesn't help I live in humid-ass-Louisiana

I'll throw in a #4 Bonus List too
*4) GI Issues, swollen Lymph nodes, hearing issues
Posted 7/7/2017 2:53 PM (GMT 0)
Burning / neuropathy in legs
Weakness. Shake when doing push ups
Twitching. 95% in legs
Posted 7/7/2017 3:10 PM (GMT 0)
My #1 is carpal tunnel like symptoms - burning, numbness, electrocuting feeling in my lower arms and hands. This also causes a measurable decrease in grip strength.

My muscles often feel week, but I started weight training and can measure that I'm not actually weaker, it just feels like they're fatiguing at simple tasks - like walking into work with a bag.

Leaky Gut is my #3.
Posted 7/7/2017 6:48 PM (GMT 0)
brain fog and everything that comes with it, it's be far my worst symptom

fatigue

joint pain
Posted 7/7/2017 6:56 PM (GMT 0)
Hard to choose just 3 so here are 3 of the worst:

1. Cardiac - heart pounding & then slowing way down
2. Limb weakness/heaviness
3. Head - vertigo, dizziness, balance - brain fog/head pressure

The other really bad one is feelings of panic.
Posted 7/10/2017 4:42 PM (GMT 0)
1) Brain fog / Dizziness
2) fatigue
3) tinnitus
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