What Does Lymes Disease Feel Like To You?

Seriously? In one paragraph? I don't think I can sum up what LD & co-infections feel like in only one paragraph!!! LOL! How about 20 paragraphs? LOL!

It felt like my world was coming apart at the seams! As if my body had decided all of a sudden that it didn't want to play any more! Many times through out my infections, I really felt as if I would die in just a short amount of time, but first I was going to have to really suffer.

Please remember that the blood tests that are available for most of us are far from being very reliable to exclude LD or co-infections as a source of our problems. Theses test look for the body's response to the infections. If, like me, you acquired your infection(s) a while ago (decades for me) - then the body has already been taken over by these infections and the body's responses to these infections squashed - by the infections!

Some will test positive after a couple of weeks of high dose abx, for me it took my being on abx (Minocin) for a full year before I had positives on some of my infections. Even then, only 40 - 60% of those infected will test positive! You need to be seen by someone who is capable of diagnosing clinically (by symptoms) as well. That's how I got my first dx (diagnosis), as well as quite a few others that have been here on HW.

Something that you can do is to read through the thread at the top of the forum titled "New to Lyme?", as it has some great lists of symptoms, and other things that you can read to help you evaluate yourself. Also read Dr. Burrascano's "Advanced Topics in Lyme Disease", although the main focus is on Ld itself, beginning on page 26, he lists the symptoms of the most common infections, including Lyme, Bartonella, Babesia, and Ehrlichia. This
may help you in understanding what you may be having issues with.

I hope this helps!

All I can add is what I said to my sister over a year ago:  

How can a perfectly healthy, athletic, vibrant person have so many weird little things wrong with them---all within six months--and for no reason?  

 

Then one morning I walked into a wall......and suddenly the 'things' weren't so little anymore.

All except for the ticks.  

Pain, pain. Exhaustion, and more pain. For me, it started as a "flu" not long after pulling an engorged tick off my body. After that, some big funky bug bites (not a bullseye, so I didn't think anything of it) and a weird rash on the backs of my hands (I call it "old lady hand" - wrinkly, transparent, blotchy skin where it had been completely normal young person skin days before). Then the fatigue and pain really set it.

I thought I was working myself too hard in the garden, but the aches didn't go away - they got worse. One morning I woke up with excruciating pain in both ankles. I hobbled around for a few days hoping it would go away, but it got worse. Then I woke up with excruciating pain in my left knee. I couldn't bend it and I had to ask my boyfriend to help me get my pants on so I could go to the ER where they tried to convince me that it was "probably fibromyalgia or rheumatoid arthritis". For the next 8 weeks, the pain would get worse - often to the point of not being able to put my feet on the floor, they were that sore. Migrating aches and joint pains, stabbing pains in the chest, arms, legs. Sore neck that crackles like rice krispies when you move it.

I also have increased floaters in my eyes, blurry vision, extreme dizziness, debilitating fatigue, extreme weakness in my arms and legs, feeling like my legs weighed a thousand pounds each, trouble walking, confusion, trouble finding the right word, getting lost, short term memory problems, ringing in both ears, numbness and tingling in hands and feet, restless legs, drenching night sweats, jaw pain, tooth pain, headaches, hair loss, unexplained overnight weight loss, anxiety, chest pains, trouble breathing (air hunger), paranoia, delusions, sensitivity to light and sound, heat intolerance, irritability, sleep disturbances. I often woke up feeling as if I had run a marathon in my sleep and the simplest of household chores would leave me worn out for days afterward. I literally had to drag my youngest child around in his infant car seat/carrier because I couldn't lift him (he weighs 20 lbs, I can normally lift 100 lbs).

I'm sure there are some symptoms I am forgetting, but the clencher for me was the "arthritis" in my ankles and the joint pain in my knee (when there was no injury). I have tested negative twice by ELISA, and I haven't had the western blot test (yet). Despite the two negative tests, I was treated twice by two different emergency departments for Lyme disease after they failed to find anything else wrong with me that could cause my "arthritis" - once for an inadequate 2 week period despite presenting with late disseminated lyme disease and then for three weeks with a combination of antibiotics that seems to have done the trick (at least mostly, for now. I can walk again, and I am happy with that).

My Lyme symptoms in chronological order... (pre-treatment)

Flu Like Symptoms
Panic Attack
Air Hunger
Fatigue
Anxiety
Insomnia
Brain Zaps
Unable to Concentrate
Swollen/Tender Lymph Nodes in Neck
Weird Pain in Feet
Memory Loss
Jumbling Words
Alcohol Intolerance
Social Withdrawal
More Fatigue
Weight Gain
Asthma
Body Rashes All Over
Light Sensitivity
Depersonalization
OCD
Fragile Joints
Social Anxiety
Blurred Vision
Extreme Fatigue

Had Lyme disease, spent 2 weeks in the hospital, diagnosed correctly and completely recovered in four months. I am one of the lucky ones to be diagnosed early still it was the worst four months of my life.

One year later diagnosed with breast cancer. Had surgery and 36 days of radiation.

I will always say I would rather have cancer than Lyme disease. I know I very well might die from it, but at least I am not sick as I was with Lyme.

With Lyme I had a fever 104, bp 60/40 tried to get out of bed to use the bathroom and slid to the floor, could not get up, this is what landed me in the hospital via ambulance. Diagnosed and came home to recover had unbelievable fatigue, tremors, couldn't even write, cold all the time, brain fog. When I found HW I realized actually I had a mild case of Lyme and was one of the lucky ones. I had no idea of the many symptoms there are untill I came here and then knew I was spared from almost all of them.

Please, if you even THINK you have it see a doctor ASAP catching it early is everything.  Knowing what most members at HW are going through is heartwrenching and so undeserved I know we all want you to be cured from this terrible disease.

There are so many experts here, I am not one of them, so read what others have to say and learn all you can.

Jane

 

Achy joints, daily headaches, sudden severe pain anywhere in body, numbess and tingling anywhere in body, chills shoot throughout body, blurry vision, trouble sleeping, severe anxiety, depression, ringing ears, and just never ever feeling "normal."

I was "lucky" to have confirmed case as well: started with "flu" absolute worst ever, fever, rash, Severe headache and stiff neck. improperly treated, then for next two yrs: episodes of tachycardia with decreased bp, low pulse ox levels, unexplained decrease in pulmonary function, severe pressure headache and dizziness, stiff neck and back ache, random joint pain, "air hunger"- needing to take a deep breath, brain fog, exhaustion. Keep digging until you get answers! If you think it's possible to have it, START with a lyme literate Dr! Good luck.

 

You nailed it, Lymester!

 

Lymester,

Yep, that's Lyme disease alright.